Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds

Article history

The research reported in this issue of the journal was funded by the HSDR programme or one of its preceding programmes as project number 17/05/30. The contractual start date was in November 2018. The final report began editorial review in December 2021. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HSDR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Copyright statement

Copyright © 2023 Islam et al. This work was produced by Islam et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

2023 Islam et al.

End-of-life care planning and policy

Every year, approximately 40 million people are in need of palliative care services worldwide, and only 14% of these people gain access to these services. 26 In England and Wales in 2008, the Department of Health and Social Care published an EOLC strategy to ‘bring about a step change in access to high quality care for all people approaching the end of life . . . irrespective of age, gender, ethnicity, religious belief, disability, sexual orientation, diagnosis or socioeconomic status’3 in all care settings. EOLCP is a major feature of this strategy. The first step of the care pathway set out in the End of Life Care Strategy is ‘discussions as the end of life approaches’ involving ‘open, honest communication’ and ‘identifying triggers for discussion’. 3

End-of-life care planning is in line with the provisions of the Mental Capacity Act 2005,2 which provides a legal framework to promote and safeguard decision-making by an individual. It empowers and enables people to plan ahead and communicate their wishes for a time when they might lose capacity and protects their place in the decision-making process. EOLCP may benefit patients by increasing their autonomy in deciding about their future care and choice of place of death. EOLCP is intended to align care to patient preferences before their health and decision-making ability deteriorate as a result of progression of illness and to reduce uncertainty about care decisions; thus, EOLCP may help ease the grieving process for families and result in more effective use of health-care resources. 27–29 A patient may refuse treatments, but cannot insist on treatments that are not clinically appropriate.

End-of-life care planning should be an ongoing process whereby patients, their families and health-care providers discuss the patient’s goals and values and how these should inform their current and future medical care. 30 These discussions help promote a shared understanding of what might happen, help make decisions about life-sustaining treatments and provide an opportunity to discuss potential preferences for care with patients and their families. 31,32

End-of-life care planning conversations aim to inform and empower patients to have a say about their current and future treatment in consultation with HCPs, family members and other important people in their lives. 3,33 From the patient’s perspective, there is evidence that the purpose of EOLCP is not only preparing for potential incapacity, but also preparing for dying. 34 For patients, the focus of EOLCP appears to be less on completing written advance directive forms or advance statements of wishes and more on the social processes that are enabled by discussions about dying. As a result, EOLCP is not based solely on autonomy and the exercise of control, but also on personal relationships and consideration of the impact of advanced disease and relieving burdens placed on others. With this perspective, EOLCP does not occur solely within the context of the physician/HCP–patient relationship, but also within relationships with close loved ones. 35

We have very little insight on a population-wide basis in how current EOLCP policy and practice ‘fits’ with the cultural values and beliefs of ethnically diverse patients and their end-of-life experiences. National satisfaction surveys such as the Views of Informal Carers – Evaluation of Services (VOICES)36 post bereavement and Quality Health37 have a low representation of patients from ethnically diverse communities (2.9% and 5%, respectively). However, ethnically diverse patients appear to use specialist palliative care services later and less often than white British patients. 3,38,39 There is a limited evidence base for the possible reasons for this, as discussed in the following sections: Resuscitation decisions, Communication and knowing the patient and family, Health literacy and inequalities, Cultural mores and religious beliefs and Embracing diversity in end-of life care planning.

Study justification

The evidence discussed previously, along with that presented in the work of Calanzani et al.,23 points to considerable gaps in knowledge, specifically in the existence of microcultures and in the experiences of, preferences for and goals of care of ethnically diverse patients with advanced illness, and those of their families. 23,71 We also know that ethnically diverse patients are disadvantaged in terms of access to palliative care services, especially those who cannot speak English confidently. 106

Despite UK policy prioritisation of EOLCP, 2015 work by Pollock and Wilson72 (funded by the Health and Social Care Delivery Research programme) found that EOLCP remains generally uncommon and problematic. Although this work added much to the body of knowledge about the real-world practice of EOLCP, it did not include patients or carers from ethnically diverse backgrounds. Nonetheless, Pollock and Wilson’s72 work alluded to the additional complexity perceived by HCPs in EOLCP with ethnically diverse patients and their families.

This evidence, along with emergent findings from our previous work, indicated considerable challenges in this area of practice and the desire from HCPs for evidence-based training. 41 The paucity of evidence about how culture affects the experience and anticipation of death and dying highlights the urgent need for this study. This study contributes to the currently limited knowledge regarding how patients from ethnically diverse backgrounds and their families live with an advanced illness and consider the prospect of deterioration and dying. Using qualitative methodology, this study also makes a substantial contribution to understanding the barriers to and facilitators of EOLCP with ethnically diverse patients. The design employed three approaches to exploring people’s experiences:

1. workstream (WS) 1: longitudinal cases studies with patients, FCGs and HCPs

2. WS2: individual interviews with bereaved family caregivers (BFCGs) who have experienced the loss of someone due to an advanced illness

3. WS3: findings from WSs 1 and 2 discussed with members of the public and professionals via virtual workshops and workbooks.

Aims and research question

The study aims to improve the quality and experience of EOLC for ethnically diverse patients and their families by addressing the research question: what are the barriers to and enablers of ethnically diverse patients, FCGs and HCPs engaging in EOLCP?

Objectives

1. To explore how terminally ill patients from ethnically diverse backgrounds, their FCGs and the HCPs who support them think ahead about deterioration and dying, to explore whether or not and how they engage in EOLCP, and to identify barriers to and enablers of this engagement.

2. To explore the experiences and reflections of BFCGs on EOLC, and the role and value of thinking ahead and of engagement with HCPs in EOLCP.

3. To identify information and training needs to support best practices in EOLCP and to produce an e-learning module with guidance notes available free to NHS staff and hospice providers.

Structure of the report

This chapter has provided a background to the study and considers the policy context in which it is set, alongside evidence available from previous studies. The next chapter outlines the design and methods of the study before subsequent chapters present a summary of PPI, followed by participant demographics. Findings are then presented and discussed for WSs 1 and 2. The response to these findings as introduced in WS3 are then deliberated. The conclusion provides a summary of the findings and their significance, and considers their implications for the development of policy and practice. This also includes implications of, and recommendations arising from, the study. The final chapter discusses outputs from the project, early dissemination and impact.

Study design

This was an exploratory study, which was carried out within a constructivist qualitative tradition of research. Qualitative research is concerned with eliciting how participants understand and experience the world through the cultural filters internalised through developmental processes of socialisation and through interaction with others in real-world situations and contexts. 107 Constructivism seeks to ‘see what happens’ in real-world settings and to illuminate the relevance of social context and processes for resilience, self-reliance, and the opportunities and constraints that govern access to resources for individuals and connected groups. This research approach aims to elicit and understand how research participants construct, negotiate and share meanings around the phenomenon of interest. In this study the phenomenon is deterioration, dying and medical treatments at the end of life.

The study was designed to undertake an in-depth exploration of the diversity and complexity of experience within a limited number of cases. There were three WSs:

1. WS1: longitudinal patient-centred case studies comprising an ethnically diverse patient with advanced illness, one or two of their FCGs and a HCP nominated by the patient

2. WS2: single interviews with bereaved FCGs who have experienced the loss of an ethnically diverse family member due to advanced illness

3. WS3: public and professional stakeholder virtual workshops to discuss fictionalised, EOLCP scenarios, derived from real-life experiences reported by participants.

Qualitative methods of data collection and analysis are particularly suitable for use when little is known about the issue and in the study of sensitive and complex topics. Semistructured interviews enable the exploration of key topics, while concurrently allowing the flexibility to follow up on new issues of interest and importance. 107–109 Recruiting severely ill patients to take part in research projects presents challenges, which required flexibility and sensitivity in engaging FCGs and patients in a way and at a level that they could comfortably accommodate. We adopted the case study approach because the issues are socially and culturally complex. Case studies aim to explore complexity through an intensive, holistic focus on the components of each case, rather than obtain limited data from a larger number of single types of unconnected respondents. 110–112 Case studies are suited to the investigation of complex real-world situations in which a diversity of perspectives are at play. 113,114 Engaging different participants within each case across longitudinal follow-up enables the comparison of different perspectives and the exploration of processes and experiences emerging over time, rather than the cross-sectional snapshot provided by one-off interviews. Interview data were supplemented when possible by additional data from a focused review of medical records. Each case was followed up, when possible, for a period of approximately 6 months.

Setting/context

The geographical setting for the study was the East Midlands across Leicester, Leicestershire, Nottingham and Nottinghamshire. Throughout the report, we shall refer to the settings as ‘Leicester’ and ‘Nottingham’. Patient participants were under the care of services in these areas and health professionals for WS1 and WS2 worked in these areas. FCGs for WS1 and WS2 did not have to be resident in these areas. Participants for WS3 were largely from these areas, but some key stakeholders worked elsewhere in the midlands or UK.

All research activity took place in this geographical area, and Leicestershire and Rutland Organisation for the Relief of Suffering (LOROS) Hospice was the single recruiting research site. For WS1 and WS2, interviews with FCGs who were not resident in these areas took place in a venue within a reasonable distance of LOROS Hospice or, after a protocol amendment in relation to COVID-19, virtually, as highlighted in the following section.

Ethics and governance approval

NHS Research Ethics Committee approval was obtained in December 2018 (reference number 18/WM/0310), and then two substantial amendments followed. Substantial amendment 1 (1 May 2019): we did not give copies of audio-recorded consent to the participants. This related to potential difficulties with participants having access to appropriate technology to listen to it. When interpreters were used, we informed participants that consent would be audio-recorded. The recording was then retained as source data. Paper copies of the consent forms were filed and a copy given to the participant. For practical and resource reasons, copies of audio-recordings were not distributed to participants. To enable greater flexibility for patient participation, we increased the time of maximum involvement from 4 months to 6 months, to enable our engagement with them to be at a slower pace should patients need this.

In the light of government and NIHR guidance on COVID-19, substantial amendment 2 (9 March 2020) was made to the study protocol to ensure the safe delivery of the remainder of the study. The first priority was the safety of participants, many of whom were very vulnerable to the virus. The second consideration was to minimise the burden on health services and professionals. In WS1, we completed the remaining interviews for existing participants by telephone, and also amended the timeline for these in the protocol from 6 months to 6–9 months. We recognised that, in these challenging times, it was not possible for us to review all medical records as originally planned, so we amended the relevant text in the protocol to capture this. In WS2, we obtained consent by telephone for the remaining participants and completed the single interview for these participants by telephone. In WS3, we amended the protocol to allow the workshops to be conducted face to face, via webinar or by individually completing a workbook via e-mail.

Although COVID-19 did not unduly affect the scientific quality of the project, it affected the progress of analysis and development of WS3. The chief investigator (CI) was redeployed clinically for 5 months from April to the end of August 2020. This had a knock-on effect on the timeline for study outputs. Hence, a case was put forward, and subsequently granted, for a 5-month costed extension.

As a research team, we believe that not offering vulnerable people the choice to take part in research because of assumptions made about their experiences and preferences is inequitable and exclusionary. 111–114 We also recognise that any research engaging with severely ill patients and bereaved FCGs presents challenges and needs to be broached with sensitivity and flexibility throughout the research process.

Prior to the decision to take part, participants were asked to contemplate how they would feel about deliberating their experience of illness and dying. They were assured that participation was voluntary and that they could withdraw from the study at any time. To further mitigate the potential risks for participants and researchers, an information sheet with contacts for further information or support was provided, and a follow-up telephone call with the study CI, if desired, was also offered. We developed a ‘pyramid of support needs’ to manage distress within the study, which comprised assessment by the interviewer, resulting in (1) no support required, (2) signposting to a general practitioner (GP), (3) written information provided about local third-sector organisations or (4) formal referral initiated for counselling (via study CI). Patients’ GPs were also informed that the patients were participants in this study to enable the GP to document this in their medical records as evidence of participation.

Eligibility

Sample size and structure

There are no hard and fast criteria for establishing the sample size required in qualitative research. 115 Rather, this is determined by the circumstances and context of each study. Morse116 and Malterud et al. 110 propose that the number of participants required depends on the range and depth of information collected about each participant or case (information power): the greater this is, the fewer participants required. A qualitative sample size of between 20 and 40 participants is likely to include the majority of views and experiences to be found within the target population and is in line with previous longitudinal studies in EOLC adopting a similar design and method. 72,106,115,117

Purposive sampling, which involves participant selection being guided by strategic choices regarding the individuals who or groups that can yield the most valuable and relevant information for the study, is a strategy that can optimise the depth and breadth of data in a sample and reduce the sample size required to achieve thematic saturation (i.e. when no additional themes about the research topic are emerging from the participant interviews). Stake113 cautions against increasing the number of cases much beyond 15 because the number of qualitative data generated by a larger number of cases will become unmanageable. However, a guiding principle of qualitative research is that the nature and adequacy of the final sample must be kept continuously under review, and adjustments made if necessary, to enable the study to achieve its aims. 110 Above all, it is the relevance of the participants and the quality of the data that are important, rather than the number of participants per se.

In WS1 and WS2, we purposively sampled participants across three elements of diversity:

1. religious/faith group

2. ethnic backgrounds (ethnically diverse groups)

3. disease/illness group.

Findings from our previous work suggested that cultural–religious customs and mores are one of the key factors that increases the complexity of navigating EOLC and achieving patient preferences. 41,97 It was our intention that we achieve the greatest heterogeneity of religion/faith and ethnicity in the samples of WS1 and WS2.

This concern with cultural–religious diversity was complemented by selection criteria for recruitment across illness contexts and we also purposively sampled to achieve heterogeneity across a number of disease groups (including cancer, frailty in old age, and heart and renal disease).

In addition, demographic data were recorded, including gender, age and migration generation, and we aimed to include a diversity of these characteristics in the sample.

A sampling frame was utilised to target recruitment to achieve these purposive sampling aims and to construct a matrix that may be important for attribution of themes/subthemes and in our search for examples of variance within the data. The nationally agreed guidelines to characterise self-reported ethnicity into a set of 16 codes were used. 118

Recruitment

Taking on board best practice in recruitment for research involving ethnically diverse participants, an extensive programme of awareness-raising about the project took place within community groups and organisations. 119,120 This work was informed by the networks and experiences of our PPI lead (IM) and PPI consultees [named public, carers and bereaved relatives (PCBR) research consultees] and of the co-applicants and advisors to the project. The work involved communicating the project objectives and the opportunity to be involved in research through social and traditional media; the placement of flyers in organisations and services including, but not limited to, general practices, hospice services, patient and carer support groups, community and faith groups, and libraries; and attendance at meetings and events of patient and carer support groups and community and faith groups by members of the project team.

Workstream 1: longitudinal patient case studies

The Clinical Research Network East Midlands (in which co-applicant Simon Royal and the CI have clinical leadership roles); Clinical Commissioning Group research networks and the well-established clinical and research links of the CI and co-applicants Simon Royal, Simon Conroy and Alison Pilsworth; and collaborators including specialist nurses and research nurses within participant identification centre site services were engaged to promote awareness among HCPs of the study, to promote understanding of the criteria of case eligibility and to seek identification of patients within the participant identification centre sites, which were as follows:

1. five general practices with a substantial population of ethnically diverse patients and the linked community nursing services

2. community and primary health-care services that support a population with particularly harder-to-reach ethnically diverse communities (e.g. Somali)

3. palliative care services in community, hospice and hospital sectors

4. community and secondary care services for heart failure, elderly and psychogeriatric care, renal medicine and oncology.

In total we engaged with 110 community groups in Leicester and 67 community groups in Nottingham and attended 15 community events. Our engagement with a variety of community groups provided a platform to discuss the study and how it aimed to explore experiences and improve EOLC, thus achieving a high level of community engagement in the study. In small part this was about widening recruitment; in large part it was about underpinning dissemination of findings in the future and maximising the potential for impact on patient and family care, and outcomes.

We liaised and worked with research and EOLC leads, practice managers, nurses and other workers and primary care patient participation groups to promote understanding of the study. Presentations were delivered by the CI, the principal investigator (PI), a research fellow and a research associate at a number of meetings, including those of cardiology and renal teams, general practices and local hospices within the area, and at a number of community events in which the recruitment process was discussed (see Figure 1).

FIGURE 1.

Workstream 1: patient recruitment flow chart.

Health-care professionals were asked to identify eligible patients through a variety of means, depending on their role and the systems in place within their service. HCPs were provided with the Supportive and Palliative Care Indicators Tool (SPICT™, University of Edinburgh, Edinburgh, UK)121 as a means of identifying patients at risk of deteriorating and dying with one or more advanced, progressive and life-threatening conditions and the Gold Standards Framework ‘surprise’ question: ‘would you be surprised if this patient were to die in the next 12 months?’. 80,122

A HCP known to the patient was the first to approach a patient and provide them with the participant information leaflets for patients and FCGs. Patients, or someone acting on their behalf, then contacted the research team directly about their interest in the study by telephone, e-mail or returning a reply slip in a freepost envelope given to them by the HCP. Alternatively, if they preferred, they could give permission to the HCP who first approached them to pass their contact details to the research team, requesting that the team contact them.

If a patient did not speak English, the HCP would direct the patient (or FCG, if they were interpreting on their behalf) to the appropriate information video on the LOROS project website and/or ask if a researcher with shared language skills may contact them.

If potential patient participants lacked the capacity to give any or full consent owing to the nature of their illness (e.g. dementia), the study was introduced to them and to their FCG by a known HCP. If the FCG considered that the patient would want to consider involvement, then information about the study was shared with both parties in the ways described previously. For such patients, their involvement could be limited to permission to review their medical records and to approach a FCG and a HCP to seek their involvement. However, patients were not excluded from contributing to the study through interviews if the consultee considered that this would be appropriate and acceptable.

The research team contacted patients, or their consultees, who indicated that they were interested in the study and provided them with full participant information, including in audio/video format in their first language if needed. This was available in Gujarati and Hindi translations via the LOROS website link to the study. Audio-/video-recorded methods of facilitating informed consent are regarded as acceptable alternatives to written consent for study populations in which literacy skills are variable. 123

Workstreams 1 and 2: consent

The process for obtaining participant-informed consent at the outset was undertaken with Research Ethics Committee guidance, and in accordance with good clinical practice and General Data Protection Regulation (2018)124 regulatory requirements.

The participants in WS1 and WS2 were given a copy of the original signed and dated consent form. The original signed and dated consent form was retained in the trial master file.

For patients who lacked capacity, a consultee was asked to complete the consultee declaration form in accordance with the process of the Mental Capacity Act 20052 and the Health Research Authority guidance.

The decision regarding participation in the study was entirely voluntary. The researcher emphasised to all participants that consent regarding study participation could be withdrawn at any time without penalty, without affecting the quality or quantity of their future medical care, and without loss of benefits to which the participant was otherwise entitled.

1. Written consent was taken.

2. If the participant’s first language was a language other than English, consent was taken verbally via a digital recorder, as well as the participant completing a written consent form in English. The interpreter was also asked to sign the written consent form under ‘witness signature’.

3. Informed consent took place at least 24 hours after the participant had been given the full participant information, or as long as they required to decide.

Consent from patients and FCGs (WS1) and BFCGS (WS2) was undertaken face to face, and via a professional interpreter accompanying the researcher when needed. Patients were seen in the LOROS Hospice, in their own home or at a suitable location of their choice. For those individuals thought not to have capacity to give fully informed consent, we used the provisions of the Mental Capacity Act 20052 and the consultee provided information regarding the patient’s wishes about participation in research.

For HCPs, consent was taken immediately before the interview. For telephone interviews, consent was taken verbally via a digital recorder and consent forms were sent to the HCP and they signed and sent the original back to the researcher by post, fax or e-mail. Further details of the consent process are detailed in Ethics and governance approval.

Data collection

Case studies: workstream 1

Longitudinal case studies comprised sequential interviews over a period of up to 9 months with a patient, FCGs and a HCP nominated by the patient. Participants took part in a semistructured, audio-recorded interview arranged at their convenience. Interviews with the patient and FCG participants were mostly face to face, but, post COVID-19, some were via telephone. If a patient died during the follow-up period, a bereavement interview was requested with each FCG at a minimum of 8 weeks after the death. When possible a review of each patient’s medical records was also undertaken.

We intended to be as inclusive as possible and each case study was explored on its own terms. It is not necessary for case studies to conform to a ‘standard’ composition and patients were given flexibility and options in how they wanted to be part of the study. Consequently, the data set includes the following:

1. patients who lacked FCGs or who were unwilling/unable to nominate specific FCGs or a HCP

2. patients who nominated more than one FCG to take part in their case study.

In some case studies, the greater part of the interview data were drawn from interviews with FCGs and HCPs. This occurred in the following situations:

1. Patients did not wish to participate in some or all interviews, but were willing for their nominated FCG(s) and HCP to do so and to have their notes reviewed.

2. Patients lacked capacity to give full consent from the start (e.g. patients with dementia or a brain tumour).

The number of interviews conducted with each participant was determined by the circumstances of each case study. A minimum of two interviews was needed for each case study. A maximum of two follow-up interviews over 6–9 months were undertaken with each patient and FCG. Interviews were with patients and FCGs separately, jointly or a combination, according to participant preferences and convenience.

A nominated HCP was invited to take part in at least one interview, and, at most, two interviews, to discuss their involvement in the case (see Figure 2).

FIGURE 2.

Patient case study composition.

Experienced researchers conducted all interviews. The same researcher conducted all the interviews with each participant in the patient’s case study.

The content discussed in each interview developed over time, but, in general, interviews with patients and FCGs included exploration of the following themes:

1. experience of living with serious illness

2. understanding of the illness and the prognosis

3. goals and values with regard to their future care

4. anticipation of and thinking about the future, about decision-making and treatment preferences, and the significant factors influencing these

5. preferences in how such decisions are made

6. expectations and experiences of professional support and communication about deterioration, EOLC and EOLCP.

We were mindful that the experience of taking part in the interviews may have had an influence on the individuals. 125 Participation in research has the potential to change the nature of the patient and their family’s way of living and coping with their illness and their future, and this was to be incorporated as a topic in the interviews. The potential impact would be beneficial in that the patient/carer may communicate more effectively with care providers. The listening skills of the researcher and the facilitation of reflection and discussion may potentially change things for the participant.

In subsequent interviews, we asked the following questions:

1. How are things?

2. What’s changed in the illness?

3. Have they been thinking about the future?

4. Have they had any conversations with family/HCPs about their illness/wishes and future death (if the patient brings this into the conversation)?

5. Do they think that they have done anything differently as a result of having these conversations/being part of the study?

Such actions were explored as an outcome of the research; importantly, such observations may provide information about potential facilitators of EOLCP, as discussed in the findings and discussion in Chapter 5.

The interview with HCPs also included the following themes:

1. their experience of providing care and support for the patient and family

2. barriers to and enablers of their care of the patient and family in:

   1. understanding the illness and prognosis

   2. thinking about the future

   3. decision-making

   4. EOLCP.

Health-care professionals were also asked for their assessment of whether or not they felt that being part of this study (either they themselves or the patient or FCG) had an impact on their relationship with the patient/carer or any other research-related outcomes. This will be further discussed in Chapter 5.

Medical record review

Patients were asked to give permission for access to relevant parts of their medical records and related documents recording future care preferences.

At the end of patient involvement in the study (after 6–9 months or at death), when possible, the medical records, including nursing and allied health professional records, were sourced. These included palliative care services, primary care, community services and hospital services. The records were scrutinised for data concerning the following:

1. discussions and information-sharing about prognosis, deterioration, dying, EOLC and EOLCP

2. records relevant to recording patient views and wishes, and EOLCP, including advance care plan and DNACPR documentation

3. preferences regarding place of death.

Data from electronic and paper case notes were extracted verbatim and entered into the electronic case report form for subsequent analysis. The date, place of discussion and role of the HCP were noted for each data extracted. The researcher also added an explanation of the circumstances of the discussion to provide context for the narrative.

Completed case report forms were incorporated within the project database and form part of the data set relating to each case. This is discussed further in Chapter 5.

Workstream 2: data collection

Interviews with recently bereaved FCGs of ethnically diverse patients who died following a period of advanced disease and deterioration were conducted, either face to face or by telephone, by experienced researchers in a participant’s primary language (using translation strategies described in WS1). The interviews explored participants’ perspectives of the following:

1. living with serious illness and EOLC

2. thinking ahead about deterioration and dying

3. information-sharing, communication and decision-making in illness deterioration with the patient, family members and HCPs involved in providing care

4. the role and value of EOLCP

5. the role of the HCP in helping patients and families prepare for deterioration and dying.

Interpreters and transcription of interviews

Our research team have considerable language skills to conduct interviews in the language preferred by a participant, and one of the BFCG interviews was conducted by the bilingual PI (ZI) in Punjabi. Zoebia Islam translated the audio-recorded interview into an English-recorded version before a professional transcriber transcribed the interview. This method has previously been employed by Zoebia Islam. 126 Professional interpreters were used for patient participants in four of the case studies.

There is limited guidance available for how to appropriately brief and debrief interpreters before/after each interview. Therefore, the research team developed its own to ensure that the interpreters felt suitably prepared for the types of questions that would be posed and the sensitive nature of these. Zoebia Islam also checked that each interpreter was able to pose the questions and obtain responses in debrief meetings, especially when there may not have been any literal translations for certain words. The debrief meeting also added further explanation and understanding to the data collected. This was particularly pertinent in one case for which the interpreter was able to explain the reasoning behind certain cultural beliefs as they held the same beliefs as the participant.

All interviews were audio-recorded. Interviews in English were transcribed verbatim. Interviews in other languages recorded Zoebia Islam asking the question in English and the interpreter then repeating this in the participant’s first language. After the participant responded in their first language, the interpreter would then repeat the response in English. The English parts of the audio-recording were transcribed verbatim. Again, this method has previously been employed by Zoebia Islam. 126

All transcripts were checked for accuracy against the audio file and anonymised. Turns of phrase, idioms and metaphors were sometimes complex to translate and a note was made on the transcript of literal translation, as well as the meaning constructed by the translation during the interviews conducted by Zoebia Islam. These notes were an important aspect of quality assurance and data accuracy.

Workstream 3: public and professional virtual workshops

Workstream 3 involved conducting virtual stakeholder workshops, with participants joining a virtual workshop or participants completing a workbook. Based on the findings from WS1 and WS2, we developed topic guides for workshops and workbooks. These had commonalities, but also included materials that were specific to each of the different participant groups; they iteratively evolved during the course of the workshops. Stakeholders were categorised as members of the public from diverse ethnic backgrounds (lay), community and faith leaders, academics, educators or HCPs.

Workstream 3: sampling and recruitment

For WS3, we purposively recruited and sampled across the range of stakeholders. The recruitment of stakeholder participants was via a process of snowballing. The study team and all collaborators, including members of the PCBR group, identified potential participants via local small-world networks. Study flyers and e-mails were circulated. Through this process, > 140 potential participants were contacted. Potential participants were contacted by e-mail, were sent a participant information leaflet and reply slip, and were offered the opportunity to attend a workshop or compete a workbook in their own time.

Workstream 3: data collection

Based on the findings from WS1 and WS2, eight fictionalised stories were developed for use in the workshops. Each of the stories highlighted key themes identified in WS1 and WS2. A topic guide for workshops and workbooks for those unable to attend workshops was drafted for each of the different stakeholder groups. These draft stories, topic guides and accompanying workbooks were piloted with the PPI lead (IM) and members of the PCBR group, and were refined based on their comments and after further discussion within the core research team. The HCP topic guide and accompanying stories were also piloted with professionals, with subsequent refinement.

The workbooks and topic guides had some commonalities; for instance, all participants were asked to identify challenges within each story and best practice for HCPs in supporting patients in EOLC discussions and planning, and to comment on the implication of these best practices for training and for service delivery. Key questions were as follows: what are the ‘generic’ issues? Are there any specific ethnically diverse issues? How do ethnically diverse backgrounds overlay/increase complexity of the generic issues? How do professionals make ‘best-interests’ decisions in the cross-cultural context?

Each stakeholder workshop also included material that was tailored to each of the different groups and that iteratively evolved during the course of the workshops. The stories and the key themes highlighted in each will be further discussed in Chapter 6 and are presented in Appendix 1.

Each virtual workshop had a maximum of five participants. Data resulting from the workbook tasks, contemporaneous field notes, audio-recordings of workshop interactions and semistructured questionnaires captured the participants’ views and are discussed in Chapter 6. Demographic information was also gathered, together with feedback on the workshop or workbook materials to inform the iterative development of WS3 and the educational outputs from the study.

Workstream 3: process and consent

On the day of the workshop, the chairperson of the session, the CI (CF), welcomed everyone joining the workshop; led the introduction of the team; and went through each item on the consent form, asking participants to initial and sign accordingly and return by post or e-mail. On receipt of a signed participant consent form, the study research associate (MH) also signed and dated the form and allocated each participant an identity number before returning a copy to the participant. Participants completing workbooks were also required to read the information leaflet before completing their consent form and the workbooks. On receipt of a completed and signed participant consent form and completed workbooks, for both participants who attended virtual workshops and participants who completed individual workbooks, Matilda Hanjari sent each participant thank-you vouchers.

Analysis of workstreams 1, 2 and 3: multiple datasets

There were several data sets for analysis.

1. WS1: 18 patient-based case studies comprising 93 interviews across three stakeholder groups (i.e. patients, FCGs and HCPs). Review of medical records for 13 cases.

2. WS2: 19 interviews with BFCGs.

3. WS3: workshop reflection notes, recordings and workbook responses.

In WS1, each data set was subjected to both separate and integrated thematic analysis through constant comparison. 108,127 The qualitative software program NVivo (QSR International, Warrington, UK) facilitated the management and coding of data sets and allowed for cross-stakeholder and cross-WS coding and queries. Analysis proceeded through a process of open coding of initial manuscripts by at least two researchers independently, and then development of the coding framework through discussion of the themes between core research team members (AP, MH, ZI, CF and KP). Coding has involved ‘coding’ segments of interview transcripts to one or more broad ‘nodes’ (or themes) within NVivo to capture all text relating to an idea or topic. The coding framework was developed through an iterative process of reading, coding and discussing data elements within the research team to identify, compare and link ‘themes’ occurring within and across the interviews. A more refined and selective process of coding from individual nodes was undertaken largely by Anne Patterson and by Kristian Pollock (co-applicant) to explore, differentiate, reorganise and relate the themes identified as of greatest relevance to the study objectives.

In WS1, patient-centred narrative case studies were developed for each of the 18 cases individually by the researcher undertaking the interviews in each case and one other core researcher, and then further refined after discussion between core researchers. These triangulate different stakeholder perspectives and data sources, including a review of medical records. Each case study involved a holistic in-depth analysis of each case to enable an understanding of how ‘thinking ahead’ and EOLCP evolve over time, and also a systematic cross-case comparison to discover patterns in the characteristics of the cases and to identify and examine any relationship between themes within a co-ordinated explanatory model of study findings. 113,127 Serial follow-up interview data go beyond cross-sectional and static accounts of specific participants and groups of stakeholders and enable an understanding of how EOLCP is managed and experienced over time within a complex network of care. The additional comparative dimension afforded by thematic analysis of the interviews of each participant group completed the triangulation of the different data sets. 114

Analysis of interview data for WS2 was similar to that for WS1: this was coded in terms of overall themes and subthemes occurring in the data through filtering in NVivo. Further exploration, by comparing themes between WS1 and WS2 and triangulating findings, was undertaken to enable an understanding of the key issues relating to EOLCP when bereaved relatives reflect on their experiences, and the degree of difference, overlap and mutual understanding that exists between them and FCGs involved in current, active care of a patient with advanced illness; patients; and HCPs.

In NVivo, data were initially coded for each of the stakeholder groups using a coding framework developed by (at least) double-coding of a range of interviews from each data set. Common threads were then drawn together from across the stakeholder groups. Relevant ‘nodes’ in NVivo were then drawn together around these common threads (e.g. communication, professional support). These were then interrogated further, for example enablers of and barriers to good communication; enablers of and barriers to effectively ‘knowing’ a patient and family. These were further coded to arrive at enablers and barriers for several aspects. For other sets of data, it was more appropriate to interrogate and code these further, using categories of ‘what worked’ and ‘what did not work’ (e.g. when scrutinising positive experiences and negative experiences of receiving health-care support). In this way, the coding framework looked both within and across stakeholder groups, which facilitated all stakeholders’ perspectives on particular emerging themes/issues.

Workstream 3: analysis

Analysis of WS3 involved a separate pragmatic thematic analysis of each workshop’s field notes (by ZI and MH). Field notes from each of the workshops were coded to themes and subthemes through a process of constant comparison, similar to that employed in WS1 and WS2. 108,127 In this, researchers focused on identifying themes and subthemes relating to the specific questions addressed in each workshop. Emerging themes were compared and grouped in relation to each category of stakeholder workshop and workbook (by ZI and MH), and then further refined after discussion with the rest of the core research team. The qualitative software program NVivo facilitated the management of this pragmatic thematic approach.

One of the co-applicants (LW) undertook separate analyses of the HCP workshop field notes. Analyses used two implementation science approaches. The first used a psychological approach to identify behaviour change techniques (BCTs) in the discussion of behaviour change by practitioners and family members. A BCT is an observable, replicable and irreducible component of an intervention designed to alter or redirect causal processes that regulate behaviour, that is a technique is proposed to be an ‘active ingredient’. 128 The 91-item taxonomy was applied to the transcripts of the workshops. The second is an organisation-level approach based in sociology: normalisation process theory (NPT). 129 It is a mid-range theory of the implementation, embedding and integration of organisational innovations, as result of individual and collective agency. This agency is developed through four processes: sense-making (coherence) work, engagement work (cognitive participation), enacting a practice (collective action) and how the intervention has an impact and on whom (reflexive action). Each of these four processes has four further components, making a 16-item framework applicable to any complex intervention or innovative practice involving the adoption of new practices. This approach was used to ascertain how the HCPs discussed the practices around ‘thinking ahead’ and EOLCP as applied to the stories and discussions in the workshops. These analyses informed the content of the learning resource.

Introduction

Patient and public involvement was a central characteristic of this project in ensuring that it was grounded in the concerns and experience of patients and FCGs and that it was conducted in an appropriate and sensitive manner. The project team included a PPI co-applicant, Irfhan Mururajani. We are greatly appreciative of the invaluable contribution and considerable work of members of the PCBR group and of Irfhan Mururajani to this work and thank them greatly for this.

Pre-award engagement

Prior to proposal submission, we obtained a public involvement funding award from Research Design Service East Midlands to develop a PCBR research consultation group. This group identified key areas of concern and discussed the proposed research topic and its significance to them and their loved ones. This group prioritised the research related to interdependence of professionals, patients and families in successfully navigating the end of life. They also highlighted the importance of professionals acting as guides and supports in this. Some of these group members were part of the Broadening Horizons project, which commenced in 2011; our PPI engagement builds on and is informed by this extensive earlier involvement with PPI. 61 In Broadening Horizons, we held 10 informal discussion groups (n = 135 participants) with users of 10 local voluntary and community organisations, to gain understanding of why the local ethnic minority communities were not using hospice services, the perceived barriers to using these, and the information they would welcome about EOLC and services. The project then recruited and trained volunteers from the communities to engage locally, raise awareness of services, and provide a mechanism to hear of unmet needs and dissatisfaction with care. The work of the Broadening Horizons project and the ongoing work of the Broadening Horizons volunteers with their communities was fundamental to generating the research questions for the Thinking Ahead project.

The public, carers and bereaved relatives group

The public involvement funding award enabled us to develop the PCBR group of 10 people from diverse ethnic and faith backgrounds, including:

1. Broadening Horizons volunteers

2. family of those in receipt of a palliative care service within Leicestershire and Rutland

3. members of ethnically diverse communities from the local interfaith group130

4. members of local user and carer groups listed in the Research Design Service East Midlands directory of local groups

5. volunteers at LOROS.

Two meetings were held with our PCBR group prior to submission of the full proposal for Thinking Ahead:

1. Meeting one: the PCBR group members were presented with lay summary and research questions. The lay summary, research questions and design were revised as a result of this initial meeting by the research team.

2. Meeting two: pior to the second meeting, participants were given the option of reading and advising on the lay summary. Thoughts were discussed and further revisions were made in the light of this second meeting.

Patient and public involvement was evaluated by a feedback questionnaire at the end of each meeting. This was a simple tick-box questionnaire with the option of expanding on certain responses if respondents wanted to do so. Their thoughts were collated with repsect to communication and organisation of the meeting before the meeting, how they felt the meeting went and how this could be improved. Participants were also asked to comment on any other concerns they may have had with regard to the research or other areas of importance to them in relation to EOLC.

The PCBR group supported the delivery of the research throughout the project, as detailed below. In pre-COVID-19 times, this was done via four face-to-face meetings; during the COVID-19 pandemic, a fifth meeting took place virtually using video. Some members also wished to contribute via one-to-one video meetings, and for those less technically oriented, we spoke via telephone calls. There has also been ongoing consultation with members of the whole group via e-mail. This mix of communication methods has enabled members to stay safe, but remain closely involved, throughout the whole project, even during periods of lockdown.

Irfhan Mururajani convened and facilitated the PCBR group meetings, with support from the research team, and acted as PPI representative at project management and steering group meetings. Irfhan Mururajani provided informal mentoring and support for each of the PCBR group members. In line with INVOLVE guidance, each of the group members was gifted £50 as a ‘thank you’ for attending each group meeting. Members were also invited to attend a research methods course run by the project PI. 131

Preparation of project materials

Members of the PCBR group were involved in discussing the protocol, methodology and materials for recruitment and data collection, ensuring that they were developed and implemented in an acceptable and feasible way.

The group also offered their diverse language skills in aiding the piloting of interviews in both English and in other languages (i.e. Gujarati and Hindi). They advised on the language use in the topic guides in WS1 and WS2 to ensure sensitivity, cultural appropriateness and clarity for a lay audience. They have supported the translation of information sheets to ensure that the written and spoken versions of the participant information leaflets in WS1 and project flyers in both WS1 and WS2 were translated to a standard that was understandable to lay participants who speak Gujarati.

Enhancing interpretations of findings

The PCBR group supported us with analysis through commenting on and discussing an excerpt provided from WS1 data (see Box 1). Their thoughts and interpretation were in line with those of the researchers, which was important in our quality assurance process. This discussion also promoted sharing examples of how their own beliefs/cultural beliefs influence behaviour during the life course and at key life events including birth, dying and death, which allowed for deeper discussion around the data collected and the interpretation of these data.

Discussion with the PCBR group on the above activity was very fruitful in identifying a number of themes that contributed to answering our research questions regarding enablers of and barriers to thinking ahead about treatments towards end of life. In particular, they spoke of ‘taboos’ in talking of death in their own communities and the terminology around death and dying that was either helpful or problematic. Discussion also included how people bring to bear their own ‘superstitions’ and beliefs that influence their degree of willingness to engage in talk about illness, treatment and possible health deterioration, and indeed to engage in medical treatments at certain times and in certain ways. This directly informed the ideas that we went on to unpack further in our analysis and in our eventual write-up of findings.

Workstream 3: development of narratives and workbooks

The PCBR group provided considerable input into the production of materials for WS3. The group commented on both the narratives we had developed for discussion in the workshops and the questions that were to be asked of workshop participants, again bringing diverse personal insights to the discussion and the use of the study’s findings.

Providing additional cultural contextualisation for all aspects of the study

The members of the PCBR group were very forthcoming in adding their own experiences and understandings that were rooted in their varying faiths, for example talking about particular observances in their faith that would directly affect whether or not and how they would wish to receive treatment. They displayed frankness and candour in talking about being, for example, a Hindu accessing the hospital system, about the food they would need to have and whether or not they would actually avoid certain days/dates for treatment in accordance with their faith; or for example, being a Muslim and considering the sensitive issue of maintaining modesty while receiving personal care. These insights added to our appreciation of the diverse lens through which we needed to scrutinise the data and the sensitivity with which we report it.

Community engagement, recruitment, dissemination and outputs

The PCBR group enabled appropriate and sensitive recruitment throughout local ethnically diverse communities and via small world networks. This laid excellent groundwork for the subsequent dissemination of findings and project impact.

Irfhan Mururajani connected us to potential participants through his community and personal networks. A lay representative on the Study Steering Committee also supported us in the same way. Irfhan Mururajani helped to organise a community presentation and open evening at City Retreat in Leicester on 29 September 2019. This enabled a group of community members and faith and community leaders from a variety of faiths to discuss EOLC in a familiar space, and enabled the team to present the project and make requests for support for the project (particularly with WS3 in mind). Irfhan Mururajani also presented a Ramadan Special show on EAVA FM 102.5 FM, a local Leicester community radio station in June 2019. Both the CI and PI were invited to come and discuss the study. This allowed the team to raise awareness of the study and palliative care services. Irfhan Mururajani also arranged and took part in radio shows alongside a PCBR group member and the research team from 5–10 July 2021 on EAVA FM. The shows were entitled ‘LOROS Takeover Week. Let’s Talk! Opening the Conversation about End of Life’. The detail and content of these is further discussed in Chapter 8.

One of the PCBR group members (Gurpreet Grewal-Santini) was also employed on the study as a Community Network Liaison Worker (CNLW) between 6 July and 15 September 2021. Gurpreet Grewal-Santini was able to use her community links and language skills to undertake a number of events with ethnically diverse groups to discuss study findings and gain an understanding of how we can make services and EOLCP more accessible, appropriate and acceptable for all. This is discussed further in Chapter 8.

Irfhan Mururajani and PCBR group members also agreed to be the readers for stories in the audio-recordings that are to be used as part of the educational resource (see Chapter 8).

Final report and future research

The PCBR group has commented on aspects of clarity in this report and provided reassurance about the depth of detail included in reporting the study findings. In many discussions, the group members have identified priority areas for further research.

The PPI lead and PCBR group members also supported development of a follow-on study proposal (they advised on title and abstract), which was submitted for Health Foundation funding in September 2020, but was unsuccessful. This proposal aims to understand and improve the quality and experience of EOLC for ethnically diverse patients and their families in the crisis situation of COVID-19 by addressing the following research questions:

1. What are the barriers to and enablers of engaging in EOLC discussions with ethnically diverse patients and their family in the context of COVID-19?

2. How has EOLC been addressed with people from ethnically diverse backgrounds who have experienced COVID-19 and with their families?

Workstream 1: patient-centred case studies

Eighteen case studies were completed over 14 months between the end of February 2019 and the end of April 2020. Figure 3 describes the cumulative recruitment, showing when each case study was initiated by recruitment of a patient and when case studies reached completion. As discussed in Chapter 2, the length of time taken to complete each case study was up to 6 months. Before the start of the COVID-19 pandemic, we had recruited 18 of the maximum plan of 20 cases; further recruitment stopped at this time point. Although some interviews did take place after the national lockdown in March 2020, with the generosity of participants already recruited, the decision was made not to undertake any more interviews with HCPs.

FIGURE 3.

Cumulative case study commencement and completion.

Each of the patients in the cases was given a pseudonym beginning with ‘C’. The details of the composition of each of the 18 case studies, including the number of interviews completed with each participant, are described in Table 1.

Sixteen cases involved patient participants and seven of these 16 cases comprised interviews with patients, their FCGs and their HCPs. Three of these 16 cases comprised interviews just with patients and their HCP and six out of the 16 cases were composed of interviews with patients and their FCGs. Two case studies did not include interviews with the patient, but comprised interviews with two FCGs and a HCP. In these two cases, the research team discussed with the FCGs the provisions of the Mental Capacity Act 20052 with regard to research and identified with the FCGs whether their relative had appointed an attorney for health and welfare or had a court-appointed deputy. In these two cases, a FCG agreed to be the consultee for the study.

Four patients died during the study. We were able to carry out post-bereavement interviews with two FCGs from the same case.

We interviewed HCPs nominated by 11 patients, all of whom were nurses. We were able to review the medical notes of 13 patient participants. A total of 93 interviews were conducted.

The 18 patients were recruited via a diversity of care providers: three hospices (10/18), acute trusts (2/18), primary care (1/18), one community trust (3/18) and self-referral through a community organisation (2/18). A detailed breakdown of the patient participant demographic characteristics is given in Table 2. In summary, the age of the participants ranged between 40 and 96 years. The majority (n = 11) had cancer. Eleven of the participants were female and seven were male. Ten participants described their ethnicity as Indian, three as Caribbean, two as African. The remaining three participants described themselves as Pakistani, former Yugoslavian and Chinese. Just over one-third of the participants described their faith as Christian (n = 7), with a further one-third describing themselves as Hindu (n = 6). Other participants were Muslim (n = 3), Jain (n = 1) and Buddhist (n = 1). Their living and social circumstances were quite diverse. The majority (n = 8) lived with a spouse, three lived alone as a sole adult and four had dependent children. Two lived with their adult children. Four of the case studies required at least one participant to be interviewed with the assistance of an interpreter.

Workstream 2: bereaved family caregivers

Nineteen individual interviews were completed with BFCGs between February 2019 and May 2020. Figure 4 illustrates the recruitment of participants over the course of the study.

FIGURE 4.

Workstream 2: recruitment of BFCGs.

The 19 participants were recruited from two hospices (10/19), a community trust (1/19), two community groups (5/19) and an acute trust (1/19), and by self-referral (2/19). The demographic details of the BFCG participants are described in Table 3. Each of the BFCGs is identified by the pseudonym of the deceased patient, who have all been given pseudonyms that begin with ‘B’. In summary, the majority of the BFCGs described their ethnicity as Indian (n = 11), four as African Caribbean, two as Pakistani, and one each as British Indian and British Asian. Thirteen were female and six were male. Seven were spouses and eight were children, with others being siblings (n = 2), a grandchild (n = 1) and a daughter-in-law (n = 1). One participant was interviewed in Punjabi by a bilingual member of the research team.

The deceased relatives’ demographic characteristics, as described by the BFCGs, are detailed in Table 4. In summary, the majority of the deceased had cancer [n = 11 (58%)]. Eleven were female and eight were male. Their ethnicity was described as Indian or Indian and African (n = 12), African Caribbean (n = 4) and Pakistani (n = 1), and their faith was described as Hindu (n = 8), Muslim (n = 6), Christian (n = 4) and Sikh (n = 1).

Workstream 3: stakeholder workshops

Between October 2020 and the end of April 2021, through a process of snowballing, > 140 potential participants were contacted (see details in Chapter 2). This resulted in a total of 11 virtual discussion workshops being held with 37 stakeholders between December 2020 and the end of April 2021. Another 13 participants completed workbooks. This resulted in a total of 50 participants in WS3, which comprised 18 laypeople or community and faith leaders, 19 HCPs, seven academics and six educators.

Most of the 18 laypeople and community or faith leaders described their ethnicity as Indian (n = 5); other ethnicities given were white (n = 3), Bangladeshi (n = 2), Pakistani (n = 1), Indian and Pakistani (n = 1), British Sikh (n = 1), Asian (n = 1), England (n = 1), white and Asian (n = 1), English (n = 1) and African (n = 1). Eleven were female. The key characteristics of the laypeople and community or faith leaders are detailed in Table 5.

The majority of the 19 HCP participants were nurses (n = 9); the others were doctors (including GPs) (n = 8), a care home manger (n = 1) and a public health programme manager (n = 1). Most described their ethnicity as white (this includes white British) (n = 13), with the rest describing themselves as African (n = 3), Indian (n = 2) and Pakistani (n = 1). Thirteen were female. Their detailed characteristics are described in Table 6.

The majority of the seven academics described themselves as having an interest in end-of-life issues (n = 4). They described their ethnicity as white (n = 5), white and Asian (n = 1) and Sri Lankan British (n = 1). Six were female. Their detailed characteristics as they provided are described in Table 7.

Two of the six educators described themselves as higher education lecturers; there was also a clinical educator, a GP, an educator, and a health and social care worker (n = 1). They described their ethnicity as white British (n = 5) and Indian (n = 1). Four were female. Their detailed characteristics as they provided them are described in Table 8.

Conclusion

This chapter has presented background information on the 115 individual participants who took part in the study and the different sources and extent of data collected. It includes a brief summary of the process of recruitment and detailed characteristics of participants in WSs 1, 2 and 3. The next chapter gives a detailed account of the findings of WS1 and WS2.

Introduction

This chapter presents the findings from the Thinking Ahead study’s first two WSs, during which researchers sought insights from patients, FCGs, HCPs and BFCGs regarding whether or not and how terminally ill patients from ethnic minority groups and their FCGs think ahead about deterioration and dying. Data were derived from qualitative interviews with bereaved FCGs, and from longitudinal patient-centred case studies based on serial interviews with patients, family members and HCPs (see Chapter 2 for further details). In particular, we sought insights into approaches to discussing the future and perceptions of patients’ and families’ receptiveness to considering future health deterioration and the treatment decisions arising from this. In the following extracts, pseudonyms beginning with ‘B’ denote BFCGs and those beginning with ‘C’ refer to patient cases.

Patient and family caregivers’ perspectives of end-of-life care planning

When talking about dying, the accounts of patient and FCG participants in the case studies tended to orient to matters to do with funerals and wills (i.e. things that happen after death), rather than what might be anticipated during the process of dying. These broader considerations were more likely to occur in the interviews with BFCGs, who could reflect back on the entire process of the patient’s illness and experience of dying, whereas the accounts of participants’ who were living with the experiences of advancing illness tended to focus on the present rather than an uncertain future, preferring to confront issues as and when they arose:

I don’t think I need to talk to anybody right now; when I need to, at that time I will.

Mr Chahine, third interview

There are so many ifs, if, if, but for now I am not thinking of those ifs. I am thinking what has been done by the doctors now.

Mr Chifamba’s mother, second interview

In addition to the perceived pointlessness of trying to predict the future, participants also wished to preserve hope, particularly for the patient, which was felt to be incompatible with too much information or scrutiny of the likely course of the illness and deterioration. Maintaining a stance to protect hope, particularly for the patient, was felt to be a priority:

I told the doctor as well, ‘OK don’t discuss anything to any family member or to . . . my wife that’s going to happen sooner or later’, and they agreed as well. So, she [wife] was giving me the option to not to talk anything about that. She was keeping positive to the last minute: ‘No matter if you give me treatment or not, I might get better’.

Mrs Bhajwar’s husband

Health-care professionals also observed that there was a clear orientation by patients to live and focus on the present and deal with the future when it happened:

The patient has not wanted to have end-of-life discussions because he wants to concentrate on the now. He said he will deal with that when it comes to it.

Mr Chaganti’s HCP

Some patients and families maintained such a stance of therapeutic optimism, either because they did not know or accept how ill the patient was, or because this was a preferred coping strategy. The tendency towards optimism, to assuming that the illness was not too advanced, that treatment might contain its progression, that there was a lot of time left, made thinking ahead irrelevant for many. Indeed, for some, death (from their illness) was not necessarily considered inevitable:

And the reason we have not had that conversation is because I believe we can have that conversation if the time comes when that’s the case. But we have not really had that conversation, we don’t see, in a sense we don’t see cancer as a threat, we don’t see cancer as it’s a threat and it’s a ‘oh gosh, it’s inevitable that she is going to die from cancer’ in that sense.

Mrs Caprice’s husband, third interview

Health-care professionals gave accounts to support the idea that patients and families orient to the now rather than the future:

Sometimes . . . I am talking about haematology as a whole here . . . sometimes, yes the patients perhaps say, ‘Well, I am still having treatment’, and it’s still there in the back of their minds, they are still having treatment. And in some ways that potentially, I suppose, can allow a degree of, it’s a strong word isn’t it, a denial of what the outcome is going to be. Because as long as they keep coming to haematology for their blood products and their outpatient appointments, the finality perhaps is pushed away.

Mrs Campbell’s HCP

Several respondents from both WSs could justify their therapeutic optimism in the light of past experience of the patient having pulled through acute crises apparently against all odds, particularly when this outcome had confounded negative professional prognostication that death was imminent:

. . . given that we only had a couple of weeks to 2 months from her diagnosis and prognosis . . . we have had her . . . it’s 5 months in now.

Mrs Chandyo’s daughter, second interview

In other cases, participants pointed to the effectiveness of treatment and the apparent stability of the patient’s condition. This gave grounds for optimism and discouraged anticipation of a negative and threatening future, which was regarded as detrimental to the patient’s well-being:

I am not quite sure when would be the best time for that. Because if her condition is stable and I don’t think she needs to concentrate any more on the afterlife than she is now.

Mrs Cheng’s husband, first interview

Religious belief and culture played important roles in the lives and values of most families in the study, and participants from different faiths held strong convictions regarding divine determination of the moment and manner of their death. From this perspective, it was pointless, as well as presumptuous, to anticipate, plan for, or attempt to determine how and when one’s life will end:

I said, ‘Who I am to ask my god?’ That would be presumptuous. So, I said I don’t ask God questions. He is my god, why should I question him? He is the one who made me, I shouldn’t question him.

Mrs Campbell, first interview

Researcher: So you are not thinking about the care you might get as time . . .?

Mrs Challa, first interview: No, whatever happens, it’s in God’s hands.

Religious belief in divine intervention was one reason for families to express a preference for active treatment to maintain the patient’s life at all costs, although this stance was not limited to those with a strong religious affiliation.

Researcher: I guess what I want to know is, has anybody talked to you about end-of-life care planning?

Mrs Challa’s husband, first interview (via interpreter): So, they believe, they have got faith in god so whatever comes, comes and has to be accepted and faced. No one has talked to them about this end-of-life care plan and the question about I don’t want this to happen. So that question relating it to the chemotherapy he says ‘no they would like right to the very end for her to be having this treatment’.

I think it’s hard to let go, that’s what it is, it’s hard to let go. I just don’t think, especially my sister, she was very close to my dad really, really close to him so it’s very difficult for her to let go. She was very adamant no, let him keep going, let him keep going, keep him alive as long as possible sort of thing.

Mr Beshara’s son

Although a tendency for therapeutic optimism was common, if the family had lacked awareness of how gravely ill the patient was, the occurrence of unexpected deterioration and death could be a devastating experience, following which participants could feel regret that they had been denied the chance to prepare and to make the best use of the time they had remaining:

Obviously, we used those last moments in the best way that you can. It wasn’t always accurate though because, you know, she tended to go over the time limit that they gave. But at least it was mentally preparing everybody, it’s important for the family to be able to kind of reach the stage where they have acceptance and they are able to let go. . . . Because if they are not told then they will just carry on with life as usual and then maybe in the last moments the people around them are not there and they need to be there.

Mrs Chandyo’s daughter, post-bereavement interview

I feel they didn’t make it clear to me, they just needed to say clearly, ‘Your mum is at end of life and there is nothing we can do for her medically. We can make her comfortable and ease her pain, but we can’t make her better’. If they had said that to me in those words, I would know exactly where I would have been with Mum. As a family we would have known what do to. . . .

Mrs Bakshi’s daughter

The pace of illness, slow, fast, variable, cyclical, uneven, shaped family expectations for the future. Participants were sometimes taken by surprise at the speed with which the final decline and death occurred. Even when people were ‘aware’ that death was, or could be, imminent, they were still shocked when it came.

It also appeared that quite a lot of vague language was used in communication between patients, FCGs and HCPs. In some cases, HCPs described talking about treatment not being curative, but apparently left open the question of when, and if, it might eventually fail:

So, we kind of had a lot of talks around, you know, this isn’t something that we are going to be able to, sort of, cure and he knows he has got to live with it until such time as it isn’t going to be manageable.

Mr Chitnis’ HCP, first interview

Although vague and indeterminate language may have been the preferred mode of discourse for many families, it made it difficult for individuals who did want guidance about what to anticipate in future to obtain this. Several patients and/or FCGs were critical of what they considered to be professional evasion or unwillingness to provide a definite prognosis or information about their future treatment options:

I saw him [hospital doctor] last week and my cancer is growing, I have got . . . aggressive cancer and it’s growing very rapidly now, it seems to be moving along. And I said to him, ‘Where is it then?’. No answer. And now they are saying . . . there is a specialist scan and I said, ‘Is that going to show up where the cancer [is]?’, and he said, ‘Well, I don’t know much about . . .’. He has to find out. And, you know, I said, ‘Why wasn’t this done before we went through the radiotherapy so that we know exactly where it is so that we know when I have the radiotherapy it’s going to work?’. No answer.

Mr Cobbina, second interview

Patient and FCG accounts of professional vagueness and prevarication were corroborated in some HCP accounts:

Mr Cobbina’s HCP: . . . the conversations . . . with this patient have more been about planning for the future as opposed to thinking about when his future, when it’s going to end . . . we have talked about what if the cancer kills him. . . . But as far as I am aware, at the moment we don’t see that happening in the future, certainly not the near future . . . he is quite pessimistic and so for me to go in and start talking about end-of-life care with a patient who isn’t end of life yet would, for him in particular, would be awful, I feel, because, you know, he needs to try and be more positive. . . .

Researcher: But you did say you have had some sort of planning discussions . . .?

Mr Cobbina’s HCP: Yes, only because he has talked about it, he has said to me, you know, ‘But what will happen in the future?’, and I said, ‘Well, we don’t know that yet, we don’t know what is going to happen in the future. But when that time comes or if that time comes then that’s when we will need to talk about what needs to happen and where you want to be and that sort of thing’. But, I haven’t had, I can’t, because he is not at that stage. I wouldn’t talk to, I didn’t discuss end of life with him because I am not aware that he is dying from his prostate cancer.

Thus, accounts from both patients and HCPs indicated that patients’ efforts to raise the topic of future deterioration could be evaded or rebuffed. Professional accounts often aligned with those of patients and FCGs who considered that it would be inappropriate, and possibly damaging, to engage in discussion of EOLC progression and options substantially in advance of their occurrence.

Health-care professional perspectives

Most of the HCPs nominated by the patient participants to take part in the case studies were nurses from a range of acute specialist or community roles. They varied in the extent to which they knew the patient or details of the patient’s personal and family circumstances. Some HCPs were surprised to have been nominated by patients to participate in the study because of what they considered to be a brief or low-level involvement with the patient. Many did not see EOLCP discussions as falling within their remit. Specialist nurses, for example, engaged with patients, potentially for a long time, in providing active treatment, which was the focus of their interaction. When treatment options ran out, the patient was discharged and referred to palliative or community care services, which were considered responsible for having such conversations. Thus, even those HCPs who had a long-term relationship with patients did not necessarily consider that it was appropriate for them to raise the topic of future deterioration and care. This could depend on the configuration of services around specific illnesses. HCPs caring for patients receiving long-term treatment did not consider that it was relevant or appropriate to raise EOLC topics when the patient was still receiving active treatment and was not close to death. They felt that this would cause needless alarm and undermine the patient’s hope. They were also concerned that such a change of tack would damage their relationship with the patient and the patient’s family.

In these contexts, thinking ahead became relevant only when the end of life was close. In the preceding extracts, such discussions were not perceived to be staff responsibility. However, it appeared that the nature of the illness [e.g. motor neurone disease (MND) and myeloma] and how different services were organised to provide treatment could shape the duration and quality of relationships between patients and staff, and whether or not HCPs considered discussion of EOLC to fall within their remit. One specialist MND nurse described how patients remained within the care of the service from diagnosis right through to the end of life. In this context, she and her colleagues considered initiation of future planning discussions to be part of their role:

I act like a key worker for them so I can refer people to other health-care professionals that they may need to see. . . . We can refer them to any of the aspects of care that [hospice name] offer right from diagnosis . . . then they are followed up . . . supporting them in any way we can . . . whether its emotionally, physically, psychologically, practically. For both the person with the MND and their family. And we will see them right to the end of their journey, until they die. . . . If I felt it was important to talk to him [case patient] about it [end of life] I would. And . . . if something cropped up in conversation, you know, and I had that moment . . . to open up discussions I would. . . .

Mr Chakraborty’s HCP

In cases in which the patient suffered complex morbidities and/or treatment and had been referred to many different services, it was difficult for individual HCPs to know if and when future planning had been discussed:

So, I think, particularly in the acute setting, if you come in with . . . an immediate illness . . . you deal with that because that’s the emergency part. And then, you know, it might be that the teams swap over or they go to a different ward and when the patient is . . . medically fit . . . they go home. But then if they come back into hospital they are not going to be under the same team. So, it’s almost seen as another acute episode rather than a progression of the previous problem.

Mrs Chadha’s HCP

There was a congruence between professional and lay perspectives about discussion of thinking ahead, and in many cases professional (non-)responses may have been well tuned to patient preferences. However, for those individuals, a minority in our study, who did want to know a clear prognosis and to discuss their future options, the lack of professional awareness and responsiveness could be deeply frustrating and damaging:

. . . you know I found it very strange when he [doctor] is saying, oh he doesn’t know what to do and oh they have found something on the scan but he doesn’t know what it is. And I found it very strange because he is supposed to be a consultant; he is supposed to be the top man and they should know these things because they come across it day in and day out. I started doing my research online and I said could it be this or could it be that then he snapped at me to say, ‘Oh, we are the experts, you should listen to us, there is no need for you to do research’.

Mr Cobbina, third interview

And the doctors are not being, they are not giving me a, how can I put it, a prognosis. It’s a wait-and-see approach so they are not sure, it’s just monitoring. . . . And the doctors are unwilling to say you have got X amount of, I don’t know, a year or 5 years to live or, so I don’t know.

Mr Chifamba, second interview

Professionals may convey mixed messages about prognosis, which may be intrinsically uncertain, and also inadvertently mislead by not being explicit, in which case the family may persist with unrealistic aspirations, for example that the patient may even recover (which is not entirely unreasonable when the patient has made heroic recoveries from illness episodes in the past).

Initiation of end-of-life care planning discussions

Regardless of role and experience, HCPs felt that it was important that end-of-life discussions should not be initiated before the patient was ‘ready’. They tended to wait for patient cues that this was the case, and capitalised on opportunities as they arose, rather than initiate discussion pre-emptively. If the topic was raised, HCPs were prepared to withdraw quickly if they encountered resistance. It was important to respect the patient’s agenda, rather than risk causing distress and damaging relationships with patients and families that may have taken considerable time to establish:

Some patients are very open about wanting to talk about the future and, you know, give you many cues and you can sort of, you know, have conversations very easily. Certainly, when I first met him [Mr Chitnis], he was definitely not that patient, he did not want to discuss, he was very fearful . . . getting better that was his absolute priority.

Mr Chitnis’ HCP

Even when community and palliative care staff acknowledged discussion of EOLCP as part of their role, they too were cautious about introducing the topic before the patient was ‘ready’. Around two-thirds of HCPs nominated by patients in the case studies had not (yet) explicitly raised the topic of death and dying with the patients or their families. HCPs considered that it was important to elicit and address patient concerns and fears at any point, but this did not necessarily end up in a discussion of death and dying. Alongside this was an indication that some patients did express fears and concerns for the future, something they found hard to articulate, and that HCPs may not have recognised. Patient concerns and preferences can shift and be volatile. Several HCPs observed that, although they generally try to avoid a direct approach if patients are not inviting discussion, sometimes situations arise (e.g. rapid deterioration) whereby the subject of EOLC has to be broached, regardless of patient readiness or ‘good’ relationships being in place:

. . . you get people who don’t want to talk about it at all, people who want to talk about it every time you see them and then there are people in the middle.

Mr Chakraborty’s HCP

. . . quite often I will sort of say if people are absolutely, they do not want to talk about it, then I will say, ‘That’s absolutely fine, you know, just bear in mind that you know I am here to have those conversations should you change your mind. And I may come back to you again in a few months’ time and bring it up again. But you know if you don’t want to talk about it that’s fine’.

Mr Chitnis’ HCP

Setting for end-of-life care discussions

The location or setting in which EOLC discussions occurred was an important factor determining family experience and response. One of the key ‘sites’ for such discussions was in the acute setting following the patient’s admission for a health crisis when staff routinely raised the issue of resuscitation. Exchanges were often described as fraught in these settings. Relatives described being suddenly confronted by the gravity of the patient’s illness and being put under pressure to make momentous decisions about resuscitation and other treatments by staff working under pressure who lacked empathy and time to communicate with care and consideration:

. . . he was quite dismissive in his manner; he was quite harsh. And my sister at one time had to say to him ‘I am not discussing this anymore because you are upsetting me’. He was quite brutal. He wasn’t saying what was involved, he was, ‘Well what is your decision going to be? what is your decision going to be?’. Repeating the same thing . . . in the hospital he seemed to think we had got the medical knowledge and we knew exactly what was involved . . . just having been told that your mother has now got a mass of cancer . . . and you are expected within seconds to be able to attempt to instruct them on what then needs to happen, I just think was completely unrealistic.

Mrs Curkovic’s daughter-consultee, first interview

Much more positive experiences were described when EOLCP was discussed in the patient’s home or in a community health-care setting. Several patients and HCPs described having been invited by their GP to make an appointment to complete an advance care plan, and there were some accounts of specialist community and hospice nurses raising EOLC issues in the patient’s home for families to consider and discuss over time, before reaching their decision:

. . . it was very painful, but yes, we had her [patient’s] daughters and my daughter and everybody round and then she explained, but it was really, really helpful. Without that I think we would still be guessing what would happen next, what medication would she have or what would she do . . . they have a lot of time to support . . . and yeah to reassure. . . .

Mrs Bansal’s daughter-in-law

It was reportedly common for family members to be present when professionals raised the topic of EOLC with patients. Indeed, in some cases the patient never spoke to a HCP alone, especially if translators were required. Professionals sometimes spoke to family members first, before discussing issues with the patient:

When the GP wanted to do . . . an end-of-life care plan he called me in first and he is like, ‘Right, you need to talk to your dad about this’, and I was like, ‘How am I supposed to tell my dad about this?’.

Mr Chandhary’s daughter, second interview

Discussion between family members and professionals could happen because the patient was acutely ill or unconscious (e.g. during an acute admission), or because they lacked cognitive capacity, but was also described in situations in which the family had become the established interlocutor in the case, rather than the patient. Some patients seemed to be content for their relatives to lead in discussion and decision-making with HCPs, and in liaising with services. However, especially when there was a need for professional or family translators, there was a significant risk that the patient’s voice was over-ridden or not heard.

End-of-life care topics

One issue that arose in interviews with all participants (professionals, patients and FCGs) was the indeterminacy of what constituted discussion of ‘EOLCP’. A few participants described being prompted to make an appointment with a GP or nurse to discuss and document the patient’s care plan. However, in most cases, professionals did not articulate a specific agenda to ‘have an EOLCP discussion’ and patients and FCGs were not familiar with this term or what it involved. Indeed, the criteria for determining what should be included, whether an EOLCP discussion had taken place or what needed to be considered to establish that it had taken place were unclear. Consequently, some patients and FCGs reported not having engaged in EOLCP, but later described episodes in which aspects of this (e.g. decisions about DNACPR or preferred place of death) had been considered. Regardless of whether patients and families identified specific topics as relating to thinking ahead, a number of key topics recurred in their accounts.

Do not attempt cardiopulmonary resuscitation

In a majority of case studies and half of the bereaved FCG interviews, DNACPR was the most frequently and extensively referenced issue. It was often described as a very difficult and sometimes protracted decision for the patient and, commonly, their family. Patients and families tended to be more willing to continue active treatment, at all costs, than HCPs thought was appropriate. For some families, agreeing to a DNACPR instruction was described as tantamount to ‘signing a death warrant’ and ‘saying, “Right, Mum, your life is finished now”.’ (Mrs Curkovic’s daughter, first interview).

Some participants had been misinformed or misunderstood the nature of resuscitation and what DNACPR meant. One concern was that once an order was in place, the patient would not receive any further active treatment:

We have agreed to the form where it says do not resuscitate, when [HCP] came out to see us again she explained again clearly that it’s not a case of if Mum got a chest infection they would say, ‘Oh, we are not doing anything’. Or, heaven forbid, she was choking at home on a piece of food that they will turn round and say ‘no, do not resuscitate’ – it wasn’t that.

Mrs Curkovic’s daughter–consultee, second interview

In such cases, the role of the HCP in taking time to understand and discuss the family’s concerns and provide accurate information about DNACPR was critical in supporting patients and, especially, relatives to eventually accept, however painful, the decision that resuscitation would not work if the person had died or would not be appropriate as the patient would be damaged by the treatment and would, at best, not recover to a meaningful quality of life. This was not always the case, however, and some families held out, even in the face of professional opinion. When families had experienced the patient recovering after a severe health crisis in the past, this became a strong reason for rejecting such an instruction:

I would say no straight away [to DNACPR] because, like I said . . . when she went into a coma and they literally wrote her off with the sepsis, she pulled through.

Mrs Chawla’s daughter, first interview

Several FCGs described having sought advice from a faith leader regarding the acceptability of refusing resuscitation. In each case it was confirmed that there was no religious objection. Discussion within families was sometimes protracted, and the locus of decision-making was quite varied. In some cases, the patient was described as the sole or main decision-maker. In others, although the matter might be discussed collectively, one or two family members were recognised to have responsibility for the decision. An additional pattern involved core family members seeking to reach consensus:

I am the eldest, but I don’t like to make any decisions on my own. I don’t want the other brothers thinking I am taking over and doing what I think is right for me and keeping them out of the situation. I wouldn’t do anything without having a discussion between us. So we all agree on something and we are all happy with what is to be done. . . . So, we would, all of us would be aware of everything that is going to go on.

Mr Chahine’s son, second interview

In several case studies, participants described the patient’s initial agreement to accept DNACPR being overturned following a period of reflection and, particularly, discussion with family members. This seemed more likely in the case of older patients who required a translator to communicate with HCPs. The extent to which the patient’s change of mind had resulted from genuine reflection and discussion within the family or had been determined by family preferences was unclear. These cases also illustrate the significant role that HCPs played, albeit inadvertently, to seek to secure an agreement to DNACPR. Participants’ accounts of such discussions highlight the importance of insightful professional recognition of ‘readiness’ to broach the topic, and a good knowledge of family dynamics. It also raises concerns about the risk of the patient’s voice being unduly influenced by HCP and FCG influences, especially if an interpreter is required to mediate communication.

Preferred place of care or death

Of those who reported a conversation about preferences for place of care or death, around one-third of patients in the case studies expressed a wish to receive care and die at home. Over half of BFCGs reported having preferences for home as a preferred place of care/death. In two cases, patients acknowledged that, although their currently desired place of care and death would be home, their illness might dictate a hospital admission and they would reconsider or accept that. Individuals were often pragmatic in their appraisal, being prepared to accept an alternative such as hospice or hospital if this should become necessary, particularly if their FCGs became unable to cope with looking after them at home. Some patients were also content to delegate this decision to family members:

Yes, they did ask me. . . . I said maybe in hospital if I am not very well. But I don’t know how long, you ask me maybe I change my mind, maybe I want to be at home. . . . When I am not feeling well, if I am not feeling well normally, I will go to hospital, probably end up going to hospital, I don’t know. Or go to hospice home, but I don’t know what the hospice home is like, so I don’t know.

Mrs Cheng, second interview

She did ask us about that, and I said ‘No’, I said, ‘I want to keep him at home for as long as possible as long as I could look after him’. If I couldn’t do it any more, [if] I was completely ill, then he would have to go to hospital.

Mr Bal’s wife

So, I was just trying to care for her at home but it was quite, it is difficult. You don’t realise how difficult it is because you don’t have all the necessary tools to be able to do that yourself.

Mrs Bhagat’s daughter

Ceiling of care

Some patients and their families had set limits to future care, including cessation or rejection of treatment, such as dialysis or pain relief. Others were clear that they wished to receive all available treatment for as long as possible, and for professionals to make every effort to prolong life. Participants’ responses were strongly influenced by past experience and observation of others. Mrs Chadha expressed her resistance to being given morphine following the distressing death of her sister. She felt that morphine had caused some serious and undesired side effects and suspected that it might also have hastened her sister’s death. Some patients were selective in the treatments they were prepared to accept or reject. Mrs Cachalia had declined dialysis, having witnessed the great pain a relative had endured, which was attributed to this intervention. She was prepared to accept oral medication. Mrs Cheng had rejected any further intravenous chemotherapy, but was willing to take antihormone treatment for cancer. In a few cases, a patient had declared that they wanted no further, or at least any additional, treatment or efforts made to prolong their life:

He says, ‘I don’t want to extend my life span’. In that sense, he goes, ‘I want to be able to do things. I want to be able to just live my life. I don’t want to try . . .’. Because one of the things they said was that there could be a possibility that they could do a small surgery and he said, ‘No, if it’s a case of a surgery, I don’t want a single incision in my body’. He goes, ‘I just want it left the way, I don’t want any more surgery’.

Mr Chandhary’s daughter, first interview

Several older patients felt that they had lived a full and complete life and accepted that this was coming to an end:

Yes, we did ask our mum as well whether, we did ask her, ‘This [is] what the doctors are saying, and they are saying you are on the last stage whether you want treatment it will not be effective’. Mum says, ‘No, I don’t want to suffer more’, So we just left it at that point.

Mrs Banerjee’s son

In other cases, regardless of age and poor state of health, patients and FCGs persisted in the desire to maintain life at all costs:

Personal choice of my Mum, ‘I want you to do all that you can’.

Mrs Chawla’s daughter, second interview

Several participants expressed a concern that certain treatments would be either administered or withheld in a deliberate attempt to shorten life:

I believe that when you go in a hospice or certain places, they tend to feed you, give you more medication, to the point where you are drowsy, you don’t know what’s happening. And the medication slowly, slowly I think makes you worse and ends your life.

Mrs Chawla, first interview

The desire for active treatment was attributed in some cases to religious beliefs about divine intervention, but was also expressed by patients who had no religious convictions. It seemed that one reason for continuing active treatment was that the patient and family lacked awareness of how ill the patient was. Another was the hope that it might be possible to extend the patient’s life long enough for new and more effective treatments to become available:

[Translated by professional interpreter] . . . the world is constantly evolving, science is constantly finding out new stuff and new things, so why does it have to stop here? Why can’t they discover something more effective to treat this?

Mrs Challa’s husband, second interview

Indeed, a strong faith in divine determination was not necessarily incompatible with acceptance of prolonged and active treatment. Patients accepted all efforts to prolong their lives alongside a calm acceptance that the duration was entirely a matter of divine will. Given that life was a gift from god, it was incumbent on the individual to live this to the full:

You know treatment, I am so happy with the treatment, they are really, really good to me. But whatever happens to me in the future, I left it to the God’s hands . . . No I don’t think about what may happen.

Mrs Challa’s husband

I just leave it to God and see what happens. But I say to myself, ‘Oh, God will sort it out’, you know. . . . You just say, ‘Oh, I will leave it to God. He will decide what to do for us’. But really and truly . . . you have got to do it as well.

Mr Chakraboty’s wife

Documented care plans

Only a handful of patients and families clearly reported having documented care plans, with a copy kept in the patient’s house to be shown to attending HCPs and paramedics. A similar number made some mention of a plan being made, but not taken up, and the rest did not refer to a plan having been discussed, at least with HCPs. Discussions of plans with the patient and family members, including for care of the patient prior to and after death, were described by a few participants. For some families, it was the religious and cultural preparation for death that was of significance, rather than professional agendas regarding EOLC. Indeed, several patients and FCGs commented that planning for end of life was not something to be discussed with professionals. This was a family matter, not the business of strangers:

Researcher: Right now, when you look at your mum and her condition, do you think what is going to happen to her in the next however long?

Mrs Chandyo’s daughter: Yeah, it’s a thought that crosses our mind that we need to be prepared to be able to look after her in her final moments and making sure that the ending is good, that she has a good funeral. That we are able to cater for things to come after.

Researcher: When you say the ending is good, what does that look like?

Mrs Chandyo’s daughter: Like, for example, she is spiritually connected to her creator is the most important one for us. That she is comfortable in herself, that she is not suffering. And she is happy with the people that are supporting her and helping her and the ones that are around her.

Researcher: And in terms of operationalising that towards her last moments what would that involve?

Mrs Chandyo’s daughter: Yeah so if she was in her last stages, I think it would be a requirement that she has the, we have similar to the bible, but it’s a scripture that she can listen to. So, it’s very calming its . . . so we would have that playing in the background. She would have to be ritually cleaned and everything, the sheets have to be clean, be in a clean state, and just have people reminding her of her goal of where she is heading. Just reminding her, because she passes away it’s a requirement for us that she says then we call it the testification of faith, which is to say that she believes in one god and the Prophet Muhammad is the last messenger. And now that is fundamental to end-of-life care, so having people around that can encourage her to be reminded of that and to be able to say it or reflect and ponder if it’s really important.

Even so, and despite a strong desire for the family to provide her mother’s EOLC, and an aversion to this being handed over to ‘strangers’, Mrs Chandyo’s daughter–consultee accepted that, if it became no longer possible to achieve her comfort at home, then the family would consider her admission to hospice.

In other cases, participants indicated that they had concerns that had not been discussed with HCPs because they fell outside the limited agenda of professional EOLCP. Mrs Challa’s husband described how someone had come from the general practice surgery to speak to the family about the patient’s future wishes. It was not clear if this had been documented, but they had made it clear that, in addition to dying at home, the family wished Mrs Challa to be resuscitated in the event that her heart stopped and to have all possible treatment to prolong her life, the determination of which they believed to be in god’s hands. However, a critical issue for Mrs Challa’s husband was how to arrange for his wife’s funeral to be held in India, rather than the UK. He had not so far felt able to talk to the GP about this, but following a discussion in the interview, he resolved to do so in the near future.

Several bereaved carers recalled situations in which speedy deterioration had made plans redundant. They described being in a rather responsive mode of planning, although, in retrospect, they appreciated the value of such planning had they had the chance to do so:

I mean, I think had the situation been different, I think, yes she could have been a lot more involved in that decision-making process itself. But also . . . what’s potentially ahead of them if someone does broach the subject to say, ‘Well, OK you know, we are at a stage where, at some point in the future, we are going to be end of life, and we need to try and think about how that would work best for you as a family and for her as a patient’. And if, you know, if those discussions happen earlier on, I think it helps the family prepare in a better way.

Mrs Bhagat’s daughter

One BFCG described how useful having a care plan in place had been in ‘standing their ground’ when their relative deteriorated and the initial professional reaction was to admit them to hospital. The availability of the plan enabled her to question whether or not this was indeed the right option. In the event, the patient was admitted to hospital where he subsequently died. However, the BFCG felt that the documented plan had enabled her voice to be heard and contributed to a soundly decided outcome. She perceived great benefit in having thought ahead and felt empowered by having a documented plan:

Yes, I would say to people that . . . plan ahead, if you know there is progressive illness in the family, plan ahead. Go to your GP, make a plan as to what you want to do, how you want it done. Rather than the professionals pushing to say ‘you have to do this, you have to do that’. It’s your and your person’s decisions as to how they want to die and where they want to die. . . . And to be looked after by family at the end, which we did. Which is what [patient] would have liked. . . . So I was very fortunate that, you know, all this thing was in place.

Mr Bagri’s wife

Documented plans, or even informal discussion, of future care decisions were described as occurring in the community, during a scheduled visit to the GP or a domiciliary visit from a nurse. Hospital was a difficult setting in which to engage in extended talk. Participants described hospital admissions as being the site of stressful and upsetting encounters, often centring on single issues such as decisions about DNACPR or ceilings of care. These also seem to have been occasions when patients and family members were given information about a limited prognosis in rather brusque and insensitive terms. The distressing nature of this information was compounded when it was also the family’s confrontation with the severity of the patient’s illness and how close they were to the end of life:

Researcher: There has been no communication about . . . so they had the end-of-life care plan, they had that discussion with you when your mum had sepsis in the hospital?

Mrs Chawla’s daughter: Yes they had the do not resuscitate and everything like that, they had that discussion with us and they had the prepare for the worst and you need to get a funeral plan. But there was no real end-of-life care discussion, no.

Aspects of advance planning were quite common in relation to preparation for future events that were inevitable, but distant, for example making wills, completing lasting power of attorney, arranging and paying for funerals and collecting items for ritual ceremonies such as funeral shrouds. Discussion of such matters was easier to have far in advance of need. Mrs Chandyo’s daughter described having talked with her mother about the formalities to be observed before and after her death, including the shroud that the family had bought for her while she was still relatively well. However, in her mother’s present stage of fragile health, it would be inappropriate to raise such matters and, indeed, might be actively harmful, in prompting loss of hope, which would cause her body to ‘shut down’.

The difficulty of prognostication

For families that had engaged in discussion of EOLCP, prognosis was often described as a difficult issue. Accounts of professional estimation of the patient’s life expectancy were common, as was the experience of their inaccuracy:

I think a lot of people feel, maybe they are trying to cover their backs, I don’t know why they say that. Maybe they just want you to have realistic expectations, a minimum of how long your parent is alive. But we didn’t actually take it, it is upsetting, but as a family we have had an experience like this with my dad where they said he only had 24 hours to live, and he lived another 12 years.

Mrs Chandyo’s daughter

Where there was a discrepancy, most patients were reported to have outlived the prognosis, sometimes by a considerable period. This provided a robust justification for relatives to ignore professional invitations to engage in subsequent discussion of EOLCP. In some cases, however, participants expressed regret. Just as not realising how close the patient was to the end of life could deny family members the chance to savour the last days or weeks remaining, so the false anticipation of imminent death could prompt decisions that relatives later came to question or regret. Mrs Chandyo’s daughter–consultee described how the family had accepted a professional decision to cease active treatment and aim simply to make her mother comfortable, because she was judged to be close to death. Consequently, the family refused the offer of a blood transfusion, which, it was suggested, might make her mother feel better, apparently on the suggestion of a nurse.

Mrs Chandyo’s daughter–consultee: It is a different pathway, because they are not treating her any more. We are just trying to make her comfortable.

Researcher: What does that mean to you, they are not treating her any more, they are trying to keep her comfortable?

Mrs Chandyo’s daughter–consultee: It means they have, in terms of, for example, we didn’t expect her to live so long, we were expecting her maybe a couple of months and I think that was the expectation from the health-care professionals as well. At the time she was . . . they said if the family agreed, Mum could have another transfusion because that would perk her up, it would help her a lot. But because of the timescale we were looking at end of life, looking at her it might benefit her. And now I think that, and I think I had made that decision to go ahead with it, because that was 4 months ago.

Researcher: You think that would have helped her?

Mrs Chandyo’s daughter–consultee: I think it would have helped her yeah, not in terms of making her life better, just making her more comfortable. Because now she is, she goes blue, if it could help her even a little that would have been a help but that’s not there any more.

Researcher: Is that a decision you needed to make?

Mrs Chandyo’s daughter–consultee: It was, but we were swayed to saying well no because she might not have that long and it’s not going to benefit her. But she has actually been here about, I think, 4 months.

Several relatives described being told that there was no further treatment available for their relative, who was scheduled for comfort care only. This was a cause of some uncertainty, misunderstanding and distress, especially when participants felt that professionals were withholding treatment that might have been of benefit. Mrs Chadha’s daughter described how her mother had been told several times that the aim was simply to keep her comfortable because there was no more effective treatment available. She had also been told during an admission to accident and emergency (A&E) that she did not need to call an ambulance in future if she became unwell at home. Mrs Chadha’s daughter felt that this attitude was extremely unhelpful as her mother had several times experienced infections that were easily treatable with antibiotics. Consequently, she had endured a serious lung infection for an extended period of time, rather than ask for medical assessment and treatment. When Mrs Chadha had finally been admitted again to A&E in a state of serious ill health, Mrs Chadha’s daughter had told the consultant there that the reason her mother had not rung for an ambulance was because A&E staff had told her not to call one:

Mrs Chadha’s daughter: The only thing they keep on saying is that, you know, ‘There is no further treatment available for you. You know that you are on maximum medication, there isn’t anything else that we can do for you. And we just need to talk about making yourself comfortable rather than treating you any more because there is no treatments’.

Researcher: How does your mum take all that kind of discussion?

Mrs Chadha’s daughter: I think . . . I think she knows that she is unwell, very unwell . . . but things like, you know, things like chest infection, water infection that is minor, I would say that can be treatable with antibiotics. And Mum was really suffering months and months with it because somebody told in A&E to Mum that she doesn’t need to call an ambulance because there is no further treatment available for her. And when I said the same thing to the consultant there, when she was treated in the hospital with the chest infection and I said to them that, ‘This is the reason she didn’t ring for an ambulance, because she was told not to by one of your staff in A&E that why are you calling, you are on advanced you know’.

Researcher: So if you are in advanced whatever you don’t deserve to get any treatment?

Mrs Chadha’s daughter: Well that’s what the nurse would have thought and told Mum. Because when I spoke to the consultant and when I said to them, ‘That’s why Mum didn’t ring you’, he said, ‘But these are minor illnesses, like chest infection, we will be able to treat that. So I don’t know why they said that to your mum’.

Researcher: Hmm and you say that’s one of the nurses?

Mrs Chadha’s daughter: That’s one of the nurses in A&E yes. Who was checking Mum in.

At the same time as her mother was being told that there was no further active treatment available, and repeatedly raised the prospect of her being close to the end of life, Mrs Chadha’s daughter also reported that, when she had raised the issue of EOLC with her mother’s hospice consultant, she had been advised that it was not time to consider this yet, as her mother was not sufficiently ill:

Mrs Chadha’s daughter: I spoke to the consultant at the hospice when we went to see her.

Researcher: Was that after we spoke last?

Mrs Chadha’s daughter: Yes, I mentioned end-of [-life] care and she said, ‘Not yet’, she said, ‘It’s not, Mum’s not there yet’.

Researcher: So you initiated it with a consultant at the hospice?

Mrs Chadha’s daughter: Yes because they all keep mentioning advance care, so I said does that mean end of life. . . . So, I don’t know when does that kick in. Because at the moment it is still advance care plan.

Researcher: OK so the consultant said not yet.

Mrs Chadha’s daughter: Not yet. And that’s all.

A similar experience was described by Mrs Curkovic’s daughter. An advance care plan had been completed during a consultation with her mother’s GP, following a distressing emergency hospital admission. Staff had ‘gone on and on’ about a resuscitation decision and told the family that there was nothing more to be done for Mrs Curkovic, that a care plan had to be put in place and that she had only a few more weeks to live. However, this prognosis was subsequently over-ridden by a consultant who estimated that her mother had a life expectancy of 10–12 months:

And we said, we told her [hospital consultant] everything that had happened on the ward and [Mrs Curkovic’s daughter] then interrupted and said, ‘Can you please tell us, we know that nobody can tell us for definite how long Mum has got left, but some idea from weeks to not months, that’s what we were told, weeks not months’. And she said, ‘Well, they are not the specialist’, something to those effects, ‘They are not the specialist. Mum has got approximately between 10 to 12 months but I can’t guarantee that’. And I said, ‘But why, if they are not specialists in that field, did they even mention her life expectancy?’. If they had just left it and said an appointment will be made for you and you will be able to discuss this in further depth and hopefully the consultant might be able to tell you some sort of guidance as to how long Mum has got. But it tell us she has got weeks, not months; that was on the same day they told us they had found the cancer. I will be honest with you, I started looking at undertakers and things like that and oh my goodness all I could think of was funeral, funeral and it was horrible, it was just horrible.

Mrs Curkovic’s daughter

Mrs Curkovic’s consultant had continued to prescribe some treatment to stabilise her condition. Despite some kind of documented care plan having been drawn up while Mrs Curkovic was in hospital, apparently regarding the situations and conditions for which treatment would be given, Mrs Curkovic’s daughter said that the family had still not made a decision about DNACPR, even though they had been asked about this on a number of occasions:

I know that at some point, because they said they can take that decision out of our hands and I don’t want that decision to be taken out of our hands. I feel that I want to make that decision and I know that at some point we will sign the paperwork. But at this moment in time and I see that Mum is still strong and still well, I don’t want to sign it. You might think this is the wrong thing for me to say or a silly thing to say . . . but I just can’t do that at the moment. But as soon as I see Mum that she is getting . . . weaker and weaker and weaker, then I will say to (name), ‘I feel this is the time: are you agreeing with me?’.

Mrs Curkovic’s daughter

Their experience of the inaccuracy of professional prognostication was one reason for relatives to discount the forecasts they were given. This was also an area in which family members seemed confident in making their own assessments of their relative’s state of health and how near they were to death, based on their appearance and behaviour. This was one reason for reluctance to sign DNACPR forms before irreversible deterioration was beyond doubt; advance decisions about resuscitation were not considered to be appropriate or beneficial. Participants described feeling under pressure from hospital staff to make critical decisions about their relative’s future care, and also to accept professional judgements about the futility of resuscitation and continuing active care. These were distressing experiences, causing considerable doubt and uncertainty, especially when, as described previously, the patient subsequently outlived their prognosis. Although some participants resisted these professional judgements, others, including older patients, accepted them on the grounds that clinical expertise must be accurate and trustworthy.

Communication and language

Although acknowledging the uncertainty that characterises serious and prolonged illness, some patients expressed frustration that their concerns were not being addressed and that they were therefore ill-informed to consider what the future might hold. Poor communication and vague language, including what was perceived to be professional evasiveness and equivocation, contributed to uncertainty about diagnosis, illness progression, treatment options and prognosis:

. . . when he went in for his cancer appointment, if we asked him [doctor] ‘what is the stage, where are we, what are we looking at now?’. ‘Oh no, no, he is not at that stage now; you will know when he is at that stage . . .’. But how do you know when he is at that stage?

Mr Bashir’s daughter

Mr Cobbina had formed a much more negative assessment of his illness than was actually the case:

And then the consultant said to me, ‘Oh, yes that’s it, that will be it now, that will be all gone’, and it hasn’t. So, you know, you just don’t know what is in store for you and nobody knows how much time that we have. And, you know, it would be a good idea for consultants really to say, you know, to say it as it is. That, ‘Look, all the treatments have failed, I have got an aggressive cancer, we don’t know how long you are going to have’ or whatever. Then at least you know, and you can start preparing and be ready. But if they give you false sense of hope and say, ‘Oh yes, have this done and that should be it’. And because you rely on the consultants and the surgeons and what have you, thinking that’s their job, they do that day in day out, they know what they are talking about. So, we are relying on them and when it doesn’t work and then they tell you something different, you just don’t know where you are.

Mr Cobbina, third interview

However, the specialist nurse who had been involved in his care for a considerable time, and who described knowing the patient well, had no awareness of the nature and extent of his concerns:

We have always managed to discuss everything quite openly. And there has never been any barriers to communication I have not felt, between us. And he is a very, yeah a very intelligent gentleman that understands, you know, what everything is about.

Mr Cobbina’s HCP

Indeterminacy and professional equivocation, however motivated (e.g. whether due to genuine clinical uncertainty or from a concern not to undermine the patient’s hope and optimism), can thus serve to undermine patients’ confidence in clinicians and their relationships with them.

Some patients and FCGs felt that there were times when their ethnicity may have resulted in differential treatment and/or communication, although this was not a strong theme throughout the data:

I mean they are not overtly racist, but it’s their behaviour because they are not treating my mum the same as the English women that, the two English women next to her and opposite her.

Mrs Chandyo’s daughter, second interview

. . . probably because I am a single black male. . . . I look around when I am in the waiting room, how they are talking to other patients and what have you. It is totally different to what I am being treated.

Mr Cobbina, second interview

Some of the differential treatment noted by participants related to more practical aspects of care that held great import in whether they felt a sense of discrimination or acknowledgement of their particular needs:

. . . for BME [black and minority ethnic] people in particular, if there is no information, for example if you speak another language, there is no choice; you can’t make informed choices if you are not given the information.

Mrs Caprice, first interview

One FCG observed that professionals filter their dealings with patients and families through their own personal perspectives (‘cognitive screens’), and therefore may not fully appreciate their unique concerns, emotions and the like. The lack of close connection with the patient and their situation manifests in (mis)communication:

. . . the common factor is this, you are dealing with people whose cognitive screen is not in alignment with yours. And you may be saying the same thing, but somehow it’s not registering because there is something . . . it doesn’t match a particular profile of a person that screen is actually showing up. That’s my observation anyway.

Mrs Caprice’s husband, first interview

Most HCPs did not describe extensive experience of caring for ethnically diverse patients or the need to use interpreters. However, one participant observed that the professional team she worked in was itself ethnically diverse:

Really our team is quite diverse anyway, so we have got an Asian head of the team and so I think the patients that are Asian that come from a similar background kind of gravitate towards her, perhaps because . . . there is a less of a language barrier.

Mrs Campbell’s HCP

Several patients and FCG participants described effective communication with HCPs who could converse directly with the patient in their first language. Whereas patients may have long-standing relations with their GPs, in the secondary sector there was little chance of encountering the same individual during subsequent visits.

Translation issues

Most patients were routinely accompanied to medical appointments by at least one family member. Those who spoke little English were likely never to attend such consultations on their own. FCGs in the study indicated that offers to make professional translators available were either rejected or were not feasible within the time constraints, particularly in acute settings. Consequently, almost all translation reported to take place in health-care settings was completed by FCGs, and this was a strong preference. In a few cases, patients had access to a HCP, usually a GP, who spoke their first language and was able to explain and discuss options directly. This was felt to be particularly reassuring and made for better understanding of EOLC choices, in particular decisions about DNACPR. In addition to language challenges, two patients required assistance as a result of dementia, and two others needed help because of hearing and speaking challenges, as well as language challenges, compounding the efforts required from FCGs in providing translation in health-care discussions.

The discussion of EOLCP is intrinsically difficult, and may be more so through translators (whoever these may be). There is a risk of increasing what may already be a poor understanding of the meaning and significance of such critical issues. There is also the potential, when relying on family members to translate, for families to shape patient understanding and responses. It is clear that both HCPs and family can exert a strong influence on patient ‘choices’ if matters are filtered during, or become lost in, translation:

Mr Chahine’s HCP (second interview): So, we left the home that day having thought we’d had the conversation that [patient] agreed that he should have a DNACPR in situ. None of his care would change in any other way but [son] quite rightly wanted to discuss it with his other siblings. So obviously I wasn’t privy to the conversation he had with them, but he rang me and said actually they didn’t want the DNAR [do not attempt resuscitation] to be put in place. His father had misunderstood and he thought we were talking about him being on intensive care unit on a ventilator, on an invasive ventilator, that’s what he thought we were talking about and that’s what he wouldn’t want.

Researcher: So a complete misunderstanding?

Mr Chahine’s HCP: Well, I don’t know. I don’t know whether it’s the brothers, because I wasn’t there. I wasn’t privy to that conversation. It’s hard, isn’t it? I don’t know whether he – I don’t know.

Especially when translation is needed, it may be hard to establish the patient’s preference as they may be exposed to persuasion from both professionals and family. Accounts of both FCGs and HCPs indicated a strong professional orientation to family rather than the patient, particularly when translation was required. Mrs Curkovic had cancer and was also living with dementia, the result of which was the loss of English-language skills acquired over many years of living in the UK. Her daughters acted as translators and advocates and were purposely very selective about what they disclosed about her diagnosis to protect her from extra distress. In this case, in which FCGs were the sole source of translation, it was felt by HCPs that the FCGs were gatekeeping and that the patient’s autonomy was not fully facilitated.

Mrs Curkovic’s HCP described taking extra time and effort to try to prepare the family for the patient’s death. She was pragmatic and acknowledged the concerns of the family as legitimate areas for support while trying to empower the patient, in what appeared a delicate balancing act. The FCGs, however, felt much pressure and upset, when (acting as translators) they were asked to disclose details of her diagnosis to the patient, in front of HCPs, as this was counter to what they had decided was appropriate for their parent. Most patients, especially those who were older and communicated through translators, never saw HCPs in private and were always accompanied by at least one other relative. Although this could be seen as supportive and reassuring for the patient, it also potentially influenced what was discussed and decided on, and ultimately has the potential to sideline patient preferences for EOLC.

Some family members described feeling aggrieved that HCPs had handed them the task of undertaking translation and communication of bad news, including the responsibility for discussing DNACPR and other difficult issues with their relative. They questioned the appropriateness of this, given their own emotional involvement and personal responses to the sensitive matters being discussed:

So he [HCP] said, ‘Look, you guys need to take a decision as a family, you want to decide, we need to put a care plan in place for your dad, put a DNR [do not resuscitate] in place and things like that’. That was the hardest pill for me to swallow because I was like, I am going to have to talk to my dad about putting an end-of-life plan in place. I am going to have to talk to my dad about whether he wants to, if his heart stops, whether he wants to be resuscitated or not. And that was really, really difficult and I was driving home and I just rang my brother and I just broke down.

Mr Chandhary’s daughter, first interview

Family support

To engage with, and provide appropriate EOLC to, patients and families, HCPs need to understand the family support that is operating around the patient (see Table 2). Families displayed great diversity in composition, and availability and engagement of support. At one extreme, Mr Chitnis lived alone, estranged from his wife and family, with little contact or support from family members. At the other, Mrs Chawla lived with her eldest son in her daughter’s home, with many other family members visiting and providing support. Most cases occupied a middle ground between these extremes. Eight patients lived with spouses and sometimes other family members. Several cases included regular input from family living locally and some networks extended to virtual advice and involvement from members living at some distance, including those who lived abroad. Several patients mentioned receiving support from close friends in their community and from members of faith communities to which they belonged. Families varied also in their awareness and use of health and social services. One-third of the case study families reported accepting some sort of formal help. At least two others had turned this down. Older couples tended to be resistant to accepting outside help, even when the patient’s care needs were extensive and anticipated to increase, and despite their children’s encouragement to do so:

But, unfortunately, my mum is very reluctant to get any help and call anybody in. . . . We know that the offer is there . . . [but] as long as she can manage she wants to continue caring for my dad. And when the time comes, because she is in her 80s herself, and if the time comes she no longer is able to manage and care for him, then obviously we will have to get somebody to come in and help her along with the caring.

Mr Chahine’s son, first interview (providing care for both parents at home)

In terms of having professional carers in or having her go into a care home, it’s an alien concept to my mother. My mother’s culture is, and her background is, the family look after you. Is a bit different if she had been a lady with no offspring, with no children or no close family to look after her, that’s completely different. But when you have your own children or you have, say, close nieces or nephews, it’s expected and anticipated you look after your family.

Mrs Curkovic’s daughter–consultee, first interview (providing care for widowed parent at home)

Some families were open to the idea that they may need extra (outside) help in the future, although most wished to manage with family support until such time. Strong emotional bonds resulted in carers’ desire to provide all the patient’s support by themselves. Wives, especially, but also adult children, expressed concerns about being subject to censure for failing to show sufficient commitment to care for family members, especially parents and spouses, which would be demonstrated by acceptance of outside help. Several participants, usually wives or daughters, were fiercely possessive about ministering to patient’s needs because this discharge of family obligation was believed to be a way of acquiring religious merit:

Part of our faith is that we should be . . . be caring for the parents because that’s our door to paradise, our parents are our door to paradise. . . . If I want to get to paradise, I have got to, my way is through them. So you see the gravity and responsibility here, we wouldn’t feel comfortable handing that to somebody else.

Mrs Chandyo’s daughter–consultee

Some families had also experienced or anticipated that outside support might compromise patient dignity during personal care. Expressed concerns included the gender of carers or that timing of carer visits might not accommodate very specific religious and/or cultural requirements (e.g. for prayer or ritual preparation):

I just think she [mother] feels that somebody coming in and doing personal care with my dad, she maybe doesn’t feel quite comfortable about that . . . although she won’t come out and admit it, but I think that’s most probably at the back of her mind and that’s why she feels it’s better she does it herself.

Mr Chahine’s son, second interview (supporting parents in their own home)

. . . because we are vegetarian, strict vegetarians, and me personally, I wouldn’t like someone who is going to call and deal with someone doing meat stuff. I know they wear gloves and that, but I wouldn’t like that to touch my food and my fridge . . . I wouldn’t like it all mixed . . . I would prefer a like for like. Someone else like an Indian carer who understands and appreciates vegetarian people. . . . So, like very strict on the vegetarian; we don’t have any eggs or fish or anything like that. So, we would be worried about that, that would be a big issue for us.

Mr Chaganti’s wife, first interview (supporting husband in their own home)

This commitment to containing care within the family could foster a ‘self-sufficiency’ that potentially precluded looking outside the close family for support. It also intensified concerns about care that the patient received during hospital admission. Some families tried to replicate a home care model when in hospital, especially if translation might be needed or specific cultural requirements regarding food may exist.

Carer burden was often evident regardless of how care was organised: a range of experiences on this was shared. People were more or less willing, able, motivated or under pressure to provide care, which varied in their capacity and resources to provide. Patients often expressed a desire not to burden others, especially adult children who they felt had their own lives to lead, with many of their own family commitments. The input from some adult children was considerable, including cases in which the patient, and possibly their spouse, was co-resident with them. In other cases, there was much less support and some patients and/or their spouses clearly struggled.

Like case participants, BFCG responses regarding family care varied. Responses did, however, include accounts of the intensifying difficulties of providing EOLC as the patient’s illness progressed. These represent quite distinctive, reflective perspectives having ‘worked through’ the caring situation to its conclusion. Many bereaved carers, as with carers among the case participants, expressed a preference for family-centric care. However, there was, for some bereaved families, a realisation that their established and preferred model of caring was not necessarily the best fit for the situation they found themselves in prior to the patient’s death. This illustrated the evolving nature of caring models and also the eclectic model of caring that might result:

When my mother was diagnosed with dementia, I remember the consultant I spoke to at the beginning. . . . She said to me, ‘There will be a time when you have to consider putting her into a home’. And I said, ‘I don’t know about that’. And she said, ‘Well, it will affect your own family and your personal life’. I said, ‘We will just cross the bridge when we get to that’. And it did affect our life completely. My routine was when I come back from work at 6 a.m. I would freshen up a bit and drop my wife off to work, wait for the carers to come in . . . at the beginning we didn’t have the carers. . . . I had to find them to help Mum . . . then we had to get ready and drop my daughters off to school . . . and come back and get her ready for the day centre. That was a big relief for us . . . from 9 until about 4 she was at the day centre.

Mrs Bajpai’s son

This example encapsulates the commitment to maintain family-centric care, an acknowledgement that family life became very busy as a result (this actually included a change in work patterns to work night shifts so as to be available for the patient in the day), an eventual need for and acceptance of additional help from outside carers alongside accessing day care outside the home. These changes occurred over a prolonged period in this example, highlighting the evolving nature of each caring situation.

There are many factors that govern the way families organise support and that, ultimately, may affect support at end of life. Indeed, there appear to be complex, mixed motivations affecting choices made, as well as factors that are outside individual family control. The study findings also suggest that some families may have desired, or even been desperate for, much more help in supporting their relatives. However, they were hampered by lack of knowledge of the system and how it works, and by cultural constraints about the inappropriateness of accepting outside help:

We would try and persevere as much as possible . . . that’s generally what we would do unless, if it’s affecting our health. Recently my brother, he had sciatica . . . so we had to all pull in together, rather than saying actually we can’t, approaching some authority and saying we can’t cope and we need extra help. Instead we had to pull together and give him [rest] so he had his time to recover. So, it’s more that you have to persevere, there is no end.

Mrs Chandyo’s daughter–consultee, first interview

I can’t just leave her with any XYZ to look after her. Because I don’t think any XYZ will look after her the way I will. If that means that I will give up my job, I will have to; if that means I have to take unpaid leave I will do. But I can’t leave my mum with any XYZ person and rely on them. Because I have always had more to deal with when I have left my family member, whether it’s in hospital, whether it’s in the nursing home. I have always had more pressure, I have always had more stress. Because I can’t rely on that person doing the right thing.

Mrs Chadha’s daughter, second interview

As Mrs Chadha’s daughter illustrates, another constraint on accepting care and support outside the family was lack of confidence and trust in staff and services to provide appropriately skilled, tailored and culturally appropriate care. The result was that, far from providing relief and respite, accepting such help could cause family carers additional stress and anxiety.

Decision-making

Patient and FCG participants had diverse perspectives on the locus of decision-making and the extent to which patients and family members wanted to engage in decisions. This was shaped by the nature and severity of the patient’s illness, whether or not the patient had retained capacity, and by the availability and configuration of family support. Some patients, including those who were older and those with strong religious or cultural traditions, were described as being in charge of their own decisions. These were respected by their family members, who might also have been involved in shared decision-making and discussion:

Dad makes the decisions. We have not taken a single decision for him because the thing is, although he was, for some time he was physically impaired, he wasn’t mentally impaired. . . . He is that traditional Indian man where he is the head of the family, he is the person who supports everyone, not the one who gets supported. And he has been like that all our life, for us he has been that pillar of strength . . . I think that’s overall his family and his religion like his faith make the certain choices that he does.

Mr Chandhary’s daughter, first interview

At the other extreme, some patients, although respected for their age and position in their family, devolved decisions to particular members of their family in the knowledge that they could trust them to make decisions in their best interests:

Yes, they [sons] were doing the communications. But with my mother-in-law, because I think, because she was older and . . . they respected the sons so much as well and they never really wanted to, she never even spoke to her sons about . . . her illness . . . or what she should do . . . she just left it to them to make the decisions and everything and she just relied on them, you know. And she knew that they would make the right decision and that’s why she just left it to them and never spoke about it. And they all respected her . . . that’s how it was, you know.

Mrs Bansal’s daughter-in-law

Another type of arrangement involved wider family discussion and involvement, even if one or two individuals took on the major role in liaising with services and HCPs. It was notable too that, within some families, even if one or two FCGs took the lead in making decisions and liaising with HCPs, there was a wider forum of family involvement, and a very deliberate discussion and sharing of information about the patient’s illness and the decisions that were made about treatment:

Mrs Chawla’s daughter (first interview): At that stage Mum is unconscious, so it’s a family decision; whenever we have been asked, she has been out of it.

Researcher: So, if the doctor were to broach those discussions [DNACPR] with you . . .

Mrs Chawla’s daughter: I would say no, the whole family would say no.

Researcher: So, what I am trying to get at is it would very much be the whole family would be involved in that decision-making process?

Mrs Chawla’s daughter: The last time they approached about it to my eldest brother, he was on the phone straight away to me to say, ‘They are talking about DNACPR’, and I am like, ‘No, it’s not happening’. And they were all happy with that decision that it’s not happening.

Most patients had at least one supportive family member who provided care and who often became the spokesperson for that patient, although, in a few cases, little FCG support was available. Spouses tended to be heavily involved, except if they had severe health problems of their own. The local availability and involvement of supportive informal caregivers shaped the way they typically communicated and allocated responsibility for decisions:

Mr Chahine’s son (second interview): I am the eldest but I don’t like to make any decisions on my own, I don’t want the other brothers thinking I am taking over and doing what I think is right for me and keeping them out of the situation. I wouldn’t do anything without having a discussion between us. So we all agree on something and we are all happy with what is to be done. . . . So, we would, all of us would be aware of everything that is going to go on.

Researcher: So it is very much a joint decision?

Mr Chahine’s son: It is a joint decision.

Researcher: And then you would speak to your parents as well?

Mr Chahine’s son: Yes.

I prefer everything to share with my family; they are very, very helpful. I have not hidden anything from my son and because . . . I can’t use my hands . . . can’t do something, banking . . . then my son does it for me and I trust them there. And anything, it’s all written on the papers that they are authorised to take the decision; if I am in the hospital, my wife or my children individually can take decisions themselves without asking me because I know they will do the right things for me.

Mr Chahine, second interview

Preferences varied regarding disclosure and discussion between patient, family and HCPs. This resulted in some patients and/or families feeling that HCPs had little or no place in any decision-making for EOLC:

You don’t tell a stranger, like a doctor, he is a stranger. I wouldn’t tell him my business. No, I wouldn’t . . . I would say, ‘I am sorry, but that’s my family and my business so I can’t tell you’.

Mrs Campbell, third interview

As mentioned previously, there were instances when either patient or family members wished to restrict information about certain aspects of prognosis and any decisions arising from these. This was largely to protect others from the impact and the distress this would cause (e.g. as in Mrs Curkovic’s case). However, a consequence of selective disclosure was that when older patients relied on family members to translate and mediate communication with HCPs, the extent to which the patient’s voice in key decisions was heard and accurately represented was often unclear.

Religious beliefs and influence on end-of-life care planning

Several patient and FCG participants considered that advance discussion or decisions about treatment or EOLC were irrelevant and even inappropriate because they believed that the timing and manner of their death would be determined by their god:

. . . when they said end-of-life palliative care, a lot of people think, ‘Oh, they are giving my mum such and such a time’. But then the only thing that went in my head is they are not God; that’s the only thing that went in my head, they are not God, they don’t know when anyone is going to die.

Mrs Campbell’s daughter, first interview

Most HCP accounts indicated that they did not employ greatly different approaches to communication and care of patients on the basis of their religious or cultural beliefs. Several professionals noted that there could be a discrepancy between the stated commitment to accept or reject treatment on the grounds of religious belief and the subsequent decisions made by the patient and family:

And you can talk to them about how their breathing will just fade and fade until they can’t breathe any more and then they will die. And there is nothing . . . resuscitation isn’t a treatment that will work. So, it will be really nice for him or her to stay at home surrounded by his family. And sometimes they understand that. Sometimes they surprise you and say even though they have been saying, ‘leave it to Allah’, they will then have interventions.

Mr Chahine’s HCP

There were concerns about death in hospital in relation to the need to manage dying in accordance with religious observances. FCGs reported that attendance of a large numbers of visitors was extremely important in some faiths in ensuring a ‘good passage’ when someone was close to death. Positioning of the bed towards Mecca was cited as a further example of practical steps that may be needed to support religious affiliation. Diet, as mentioned previously, was also a source of some concern. These were all concerns raised by some patients/FCGs, but little or no mention of these came from HCPs.

One area of concern for Muslim families was the need for a death certificate to be issued very quickly to enable burial to take place within 24 hours:

As soon as we understood that this was my dad’s last time we had, we basically got everything in place before he passed away. Because with Muslim funerals they are so fast, but we did our own research; we found out that if our GP wasn’t around to sign off his death certificate that a Macmillan nurse could do that or somebody from Macmillan could do that. But that wasn’t made clear to us, we had to find out, we had to say to the doctors, ‘Right what happens?’.

Mr Bashir’s daughter

Participants described the need to remain vigilant, especially during their relative’s hospital admissions, to ensure that care did not transgress cultural and religious practices, and the need to be proactive in ensuring that these practices could be observed as far as possible.

Interaction with professionals and services

Participants’ accounts revealed a very wide range of experiences of contact with health professionals and services. This was shaped by the nature and duration of a patient’s illness and by the organisation of services. It was also determined by wider experience of illness and care received by family members in the past. Patients and families varied greatly in their understanding and the ease with which they navigated a complex system of health care and succeeded in establishing good and enduring relationships with HCPs. Older patients often relied on adult children as translators and systems navigators, some of whom were clearly very skilled advocates for their parents. When this was not the case, it could be hard to ascertain whether or not patients had a clear understanding and awareness of the content of medical consultations.

Most patients and family members expressed overall satisfaction with treatment, and some were extremely positive, notwithstanding specific instances of dissatisfaction and bad experiences. A few were deeply critical. Some families adopted a general attitude of trust in professional expertise, whereas others were more critical and questioning. Inadequate or confusing information was a common source of complaint, especially when participants felt that they had not been adequately informed or had received conflicting information from different staff or services. Frustration about what was perceived to be professional evasion or inability to give clear and definite information about a patient’s illness progression has been described previously. However, some participants described distressing experiences when precise prognoses had been given, but subsequently proved to be inaccurate and misleading.

In addition to this, patients and FCGs were critical of the bureaucratic appropriation of their time, especially when they knew this was precious and short. Relatives were involved in the extensive work of supporting the patient. They accompanied their relatives to appointments, often a long and arduous process, involving complex journeys and reliance on others to provide transport, perhaps with young children in tow. This might be followed by a long wait to see a clinician or undergo tests, learning the results of which might necessitate another visit. This was especially frustrating when such visits seemed to serve no obvious or productive purpose and the family felt that they learned nothing valuable as a result. Meanwhile, participants had to juggle medical appointments with many other work and family commitments:

So I have to take her [patient], or my husband if he is off on his 4 days off. . . . I am a little bit struggling when you talk about appointments, because if the NHS has decided that there is no further treatment for Mum, yet they still keep giving her appointments and drag her out of the home without any reason, because they are not treating her, they just want to know how she is getting on. But I haven’t got time to waste like that; neither has Mum because she just feels very strongly, ‘Why don’t they want to treat me?’.

Mrs Chadha’s daughter, second interview

A strong theme running through the data was participants’ frustration over not ‘being known’ within the system, of interacting with a large number of different individuals and services, and constantly having to tell and retell their story to individuals who displayed no knowledge of the case and were likely never to be seen again:

I think they need to get their act together, look at the notes and see where best to move forward. And have that information before I come to the appointment . . . Not saying, ‘Oh, I don’t know, I don’t know, I don’t know’. You know, what I find is they are looking at the notes when I arrive there and they haven’t really got much information . . . they really need to look at the notes, find the information have a meeting how we can progress forward. You know, have a small group of people that know about me and know about your circumstances, know about what treatment we can give you and what the outcome could be, with all the side effects so that we can make a decision.

Mr Cobbina, second interview

The biggest stress for me is having to repeat myself over and over again with Mum’s medical condition. But whether she is 999 going to A&E, whether she is going to the doctors, whether she is going to the consultant they should have Mum’s record. NHS should keep a record on the system: why am I repeating myself everywhere? . . . I am saying those words over and over again to so many NHS staff and it hurts as a family to repeat that because it’s just reminding me that she is going. It’s not nice. . . . I struggle to do that more than looking after Mum to be honest . . . that’s really annoying for me.

Mrs Chadha’s daughter, second interview

Another source of dissatisfaction was the experience of poorly integrated care. Some participants expressed a sense of falling through the cracks between services that were not joined up or well co-ordinated. This was a particular problem for cancer patients following discharge from active treatment. They felt a sense of being left in limbo after contact with HCPs came to an end, unless they had needs, such as control of pain, that occasioned referral to palliative care. However, several HCPs reported that, even after referral, patients were not always accepted by the service:

So, we were trying to contact the specialist nurse who, when you see them the first time at the cancer unit, they say to you, ‘This is your nurse’s number. Ring her any time and she will get back to you’. Well, no they don’t get back to you . . . and you are trying to find answers; you are trying to say, ‘Is this end of life . . . should we call family? We don’t know what is happening’. To get an answer from anybody was absolutely mind-numbingly not possible.

Mr Bashir’s daughter

The challenges from when a patient gets treated in hospital to when they die, there seems to be a gap in between where there is no cancer treatment available. I think they sometimes feel like they don’t know where to go to. There is nobody that sees them in between. . . . When we try to refer to palliative nursing in the community, they won’t just go and see them. Even though they could be 2 weeks away from passing away. . . . I find that difficult because they don’t have pain or they don’t have the typical palliative care needs . . . and I feel like they are missing out on the really good palliative care end.

Mr Chaganti’s HCP

Participants described a lack of information about services that were available to them. Their ability to navigate the system was often dependent on chance encounters, outside as well as within the system, and also the learning acquired through prior experience:

Yes, no one ever mentioned that to me. I found that out by a complete chance that there is such a thing for paraplegic people, there is such a thing called NHS Complete Care.

Mr Chaganti, second interview

Yes, because we didn’t really think about grants and whatever, we didn’t even really know anything, all we knew was that Dad was unwell. So, Mum has actually got quite a lot of the privileges, well not the privileges, she is like . . . Dad was first run at it so we were totally clueless on what sort of grants, what benefits, anything like that you could provide. We just thought ‘Dad is unwell; we will look after him, do what we can’. And it turns out we lost out on a lot of things because they just don’t tell you.

Mrs Chawla’s daughter, second interview

Alongside the struggle to get to grips with the intricacies of the system and find out about services and benefits that were available, participants described their need to exercise vigilance over a patient’s care. This was especially necessary in relation to religious and cultural requirements relating to ritual, diet and personal care. Concern about such matters was one reason why participants perceived hospital admission to be undesirable and even risky:

And then this blood sugar thing that was difficult to get the, to the point where even the cook was not made aware that he had diabetes, she was giving him puddings. It was only when my daughter went and said, ‘You do realise my father has got diabetes?’ . . . It’s like there wasn’t that awareness from the whole thing. I mean, we had, as a family, to make them aware at the hospital.

Mr Bharti’s wife

Generally she [patient] shies away from men and would prefer females to be responsible for her care. I think when we went onto the ward it was quite a traumatic experience for her there because we weren’t allowed to choose . . . [who] was able to change her. We didn’t know what our rights were and she felt her modesty was encroached and we weren’t able to do anything about it.

Mrs Chandyo’s daughter, first interview

The value of a key worker to help families navigate the system and think forward to future developments and decisions was considerable, but the availability of these was very variable and seemed largely determined by the nature of the illness. As indicated previously, continuity of care and specialist nurse support were well established for MND and haemophilia and some other areas, but notably not for cancer, for which patients were usually seen by a variety of different services and personnel that lacked effective interagency co-ordination or communication:

We help them find their way round the system sometimes because sometimes it’s easier for carers to ring in to us rather than think who they need to see. Because there can be at least 10 health-care professionals involved with somebody with MND, so it’s a very complicated system if you don’t know it, if you can’t navigate round. So, we help them a lot with that.

Mr Chakraborty’s HCP

Health-care professionals varied in their awareness of the difficulties patients and FCGs experienced in navigating health care and finding out about available support. However, they rarely, if ever, spontaneously commented on ethnic or cultural diversity as a relevant factor influencing their practice or the patient’s experience of care. Even when this was raised as a topic for discussion in the interview, few professional participants acknowledged this as a significant factor in the delivery or experience of care, in comparison to patients from a white British background:

I don’t really make any distinction between patients of different communities. I am sorry, I can’t really tell you from one community over another. . . . Yes, I can’t give you any specifics about BAME [black, Asian and minority ethnic].

Mrs Campbell’s HCP

Generally, I have found it harder to talk about advance care planning . . . I have found over the years that people of an Asian background or minority background are less inclined to want it in place.

Mr Chahine’s HCP

Several patients and FCGs did express concerns, or at least suspicion, that ethnicity had been a negative factor affecting the treatment they received. However, complaints more often concerned dissatisfaction with what was perceived to be poor treatment, poor communication or medical incompetence, which were not explicitly linked to the patient’s ethnicity:

And it was a minefield to find out who’s responsible for what. . . . Luckily, I was able to pin down the doctor and say, ‘Now, if he is a, if it’s a pre-existing condition like the blood pressure, low blood pressure, or the diabetes or whatever it is, who is responsible?’. Then they told me this bit is the hospital’s responsibility, this bit is the . . . responsibility of the doctors. I had to almost make a case to fight to make sure they knew that; they were not always communicating with one another, that was very difficult. Because the hospitals were not communicating with the doctors on the ongoing things. . . .

Mr Bharti’s wife

So, the next morning I got there and the sight of him really disgusted me. He was in a pool of urine sleeping on the bed and he hadn’t eaten anything. . . . He was so angry . . . he was very, very upset and to see him like that, because I have never ever known, because I used to give him shower every morning and he used to wear fresh clothes every day. And I said, ‘This is not on’. I said, ‘I am going to take him right away’. So, I said, ‘No, I am not waiting for anybody. I am just going to take him’. The nurses came running. I said, ‘No. I am not taking, I am not going to accept this’. I said, ‘This is, I am going to make a complaint and I am not going to let this go.’ I said, ‘He hasn’t even had his breakfast. He is diabetic and he has not had his breakfast. It’s 10.30 now’.

Mr Bagri’s wife

These extracts illustrate the very proactive role of some relatives in acting as advocates for the patient. However, patients who lacked access to the social and cultural capital required to exercise such vigilance experienced greater difficulties in successfully navigating a complex system of care that they experienced as bureaucratic and confusing.

Reflexivity

During case study interviews, most participants were asked if the experience of taking part in the research had influenced them in any way. In three cases, participants explicitly said that they had been prompted to reflect and to think a little more about what the future might entail (this included the idea of thinking ahead about end of life). In five cases, people described some therapeutic benefits of taking part in the research, including having a chance to air their feelings about their experiences to date. These included feelings of being quite isolated as a patient or carer or about the burden of caring generally. Others felt that they had benefited from a chance to vent frustrations at their situation and sometimes with services. In a couple of cases, participants’ reflections had led them to considering further practical help they might go on to seek. At least two HCPs expressed possible changes in their practice, in particular related to knowing more about their patients and their potentially diverse needs. One HCP indicated that they had further reflected on opportunities that might arise to introduce the idea of thinking ahead to patients, with reference to interactions with a former patient. Another reflected further on an instance when an opportunity had arisen and was taken up by the HCP: a plan loosely agreed, but then this was subsequently over-ridden by family members.

Conclusion

This chapter has reported the key findings from this qualitative, exploratory study of the lived experiences of patients and their families. The patients and FCGs who took part in the research represent a wide range of ethnically diverse groups and the inclusion of nominated HCPs in the case studies has enabled a triangulation of different stakeholder perspectives. The cultural and illness diversity of participants was paralleled by a very wide range of reported views and experiences of EOLC. Most participants were broadly satisfied with the care they had received, notwithstanding some negative experiences. A few were extremely critical. Reported shortcomings most often focused on poor communication, lack of information and unco-ordinated care, which have been widely reported elsewhere. 23,72 A few participants felt that they had experienced discrimination or experienced poorer quality care because of their ethnicity, but this was not a strong theme throughout the data. The findings will be further discussed in Chapter 7 and integrated with those of the following chapter related to WS3.

Barriers to engaging in end-of-life care planning

Enablers to engaging in end-of-life care planning

Conclusions

The 50 participants in this WS came from a very broad diversity of backgrounds and the discussions have shed further light and depth from a breadth of stakeholder perspectives on the issues and themes that emerged from our interviews with patients, family members and some health professionals supporting them.

The perspectives of public participants have affirmed the themes in the experiences of participants in WS1 and WS2. The perspectives of academics have placed our findings in the literature and current ways of thinking about ethnic health and addressing inequalities and inequities.

Participants have discussed what these themes mean for the practice required of HCPs, what the key issues might be in achieving good practice and what training would be useful to develop this. The discussions of HCPs have provided insights into the behaviours that need to be integrated into practice and how these might be developed through training and learning resources and inform the e-learning output of this project. As an example, an interactive forum was not part of the specification of final learning resources as it is resource intensive, but could be used with groups of leaners using the same resource and sharing their learning experience, such as through a closed Facebook (Meta Platforms, Inc., Menlo Park, CA, USA) group.

The use of narratives and the story format was universally welcomed as a powerful tool to engage people and, through this emotional response to a patient’s story, promote the motivation to learn and to embed changes in practice. E-learning is usually an independent, solitary activity and a strong message from the findings is that HCP and other stakeholders regard collective working and coherence as key processes in achieving normalisation of greater competence in supporting patients and their families from diverse ethnic backgrounds.

Introduction

Our learning over 35 months from patients and families from a diversity of ethnic, faith and sociocultural backgrounds who were living with advanced disease and with the likelihood of deterioration and dying over the coming months has been described in the previous chapters. These accounts paint a rich and diverse picture of how people live with the prospect of their death and whether or not and how they consider their future.

We acknowledge the difficulties in summarising participant experiences and perspectives because these relate to many clinical encounters in many different settings and are characterised by great diversity. 132 However, despite specific areas of dissatisfaction, most participants were broadly positive about their experience of care for the patient. A few had serious complaints and some were extremely satisfied. Dissatisfaction tended to relate to general shortcomings in care and communication, which have been widely reported previously. 24,72 A few complaints were specific to a patient’s ethnicity and culture, but, overall, this was not a strong theme in the data.

Our findings highlight the unique nature of every patient and family, and the differences between individuals within the same family and ethnic group, as well as between them. The findings also reveal many similarities in the experiences of EOLC and communication between patients and FCGs from ethnically diverse groups and from the wider UK population, as well as patient and FCG responses to EOLC and communication. 69,88 Previous work by co-applicant Kristian Pollock with white British participants concerning ACP discussions has found that prognostic uncertainties made such discussions challenging and that many HCPs found it difficult to raise the topic and recognise when patients were ready to talk about the future. Most patients preferred to leave such discussions until they had become severely unwell, and the findings challenged the policy assumptions about ACP that all patients wish for, or would benefit from, an open discussion about death. 72

Furthermore, a systematic review of the ACP experiences of patients with life-limiting illnesses identified diversity of experiences and individual preferences in engaging in discussions that aligned to three themes, which can be seen as a continuum along which patient receptiveness and desire for ACP rest, but which may also fluctuate, bidirectionally, during their illness: ambivalence to the balance of benefits and burdens of thinking ahead about future deterioration, ‘readiness’ as a prerequisite for the benefits, and a degree of openness or comfort in discussing preferences for the future. 133 These themes interlink as ‘two sides of the coin’ with respect to barriers to and enablers of both discussions about future deterioration and the development of personalised advance care plans that seek to enable self-determined preferences in that future.

Our findings affirm that these underpinning themes present barriers and facilitators for people from a diversity of ethnic and religious backgrounds. In addition, they indicate that there are distinctive and highly nuanced aspects of the experience and circumstances of patients and FCGs from ethnically diverse communities that compound the complexities alluded to in other studies of ethnically diverse and palliative care the UK. 23,134,135 The specific issues on which we focus here relate to the findings concerning understanding and engaging with EOLCP; prognosis; awareness of dying and thinking ahead; language, communication and decision-making; models of care; and navigating a complex system of health care.

Understanding and engaging with end-of-life care planning

Our findings indicate that there is some confusion, especially among patients and FCGs, about what constitutes EOLC and when discussions concerning this should be triggered. This serves to confound the current policy that it is valuable for people to have such discussions if they are to be enabled to express preferences and plan future care and obtain appropriate services at the end of life. 136 What constituted discussion about ‘thinking ahead’ and whether EOLCP had occurred was often ambiguous and hard to recognise.

In their accounts of thinking ahead, participants tended to focus their attention on death and what happened afterwards, such as funerals and wills, rather than the preceding and uncertain process of dying. 136,137 Some patient participants described their efforts to make arrangements in advance to help relatives cope with loss and administrative burden, to leave a legacy of care and support after their death. Several participants had completed lasting power of attorney documents, for financial affairs, and a few expressed a wish for their ashes to be repatriated to their native countries. Concern with funerals and disposal of the body reflects what was of most immediate importance to people and was how they tended to interpret questions about EOLCP.

Decision-making around EOLC was not so pertinent to participants, perhaps because they concerned experiences that were unknown, unwelcome and could not be easily imagined. 136–138 Consequently, reference in the accounts of participants to anticipatory questions about, or discussion of, what was likely to happen during the process of dying was unusual. 137 There was little detailed consideration in the data of the content and formal documentation of EOLC plans, although they were valued by the few families who reported having completed them. However, participants did often recognise specific topics that were mentioned by researchers during the interview (e.g. resuscitation, preferred place of care and death, limits to care and treatment) and described their experiences of talking about these. Although ACP should involve a holistic discussion of ‘what matters to me’ at the end of life, our participants’ experiences highlight the extent to which this consisted largely of a simplified, disaggregated, task-based focus on specific, documentable items such as decisions about DNACPR, and place of death. 3,10,33,72,139

Offering opportunity for conversations with people in the last year of life about future deterioration is supposed to fall within the remit of all HCPs, regardless of role. 140,141 However, in the Thinking Ahead study, many HCPs did not consider discussion of EOLCP to be their responsibility, suggesting this was the remit of palliative care services. They did not consider that it was relevant or appropriate to raise EOLC topics when the patient was still receiving active treatment and was not perceived to be close to death. They reported rarely initiating discussion of the topic, and not before the patient was clearly gravely ill. 142,143 Some positive accounts were given of consultations being scheduled to discuss EOLCP within the context of an established relationship with the patient’s GP. As widely reported in other studies, HCPs were concerned that talk about end of life, especially if mistimed, risked damaging their relationship with patients, and the trust they had established, as well as destroying hope. 72,143–145 Thus, there was often an alignment of motivation between patients, FCGs and HCPs to maintain a positive recovery orientation and avoid the topic of end of life. 72,146 Not knowing too much about the prognosis could be a prerequisite for maintaining hope, optimism and engagement.

Professionals emphasised the importance of identifying ‘readiness’ in patients and family members and the need to be alert to cues that they were receptive to discussion of future planning. 72,144,147 Policy drivers towards open and transparent communication between patients and professionals, and the encouragement of partnership and shared decision-making in medical consultations, have been promoted for decades. 148,149 In the face of this, the persistent entrenchment of patterns of communication in which ambiguity, and even denial, may be preferred over clarity points to the functional and adaptive capacity of the positive recovery orientation for many patients. 69,148 Although a positive recovery orientation may suit many patients and FCGs, there are some, a minority in our study, who have a strong desire to be fully informed about their illness, prognosis and future care to be aware of their ending and prepare for it. 150,151 In these cases, the positive recovery orientation might work to their disadvantage, much as previous studies have reported over a period of more than half a century. 148,152–154

Individuals who sought to know the details of their illness and prognosis became extremely frustrated by what they perceived to be professional reluctance to address these issues, and by their evasion and indeterminacy, whether this stemmed from deliberate evasion or lack of expertise. Some participants appreciated that professionals themselves were subject to the intrinsic uncertainty of prognosis. Their experience evokes the distinction originally made between ‘clinical’ and ‘functional’ uncertainty. 155 ‘Clinical’ uncertainty refers to the real unpredictability of illness progression and outcome, whereas ‘functional’ uncertainty is a strategy professionals adopt to manage their engagement with patients and families and avoid being drawn into difficult and protracted conversations. Some family members in the study adopted a similar strategy in withholding information from relatives, especially patients, to avoid distress and maintain hope. 69 This effort to protect patients from awareness of their poor prognosis has been widely reported among ethnically diverse populations. 99,136,156–158

In contrast to the circumspection with which professionals often approached EOLC discussion during scheduled or routine encounters, FCGs described a much blunter approach prompted by patients’ urgent hospital admissions following a crisis or rapid deterioration in their condition. The families described distressing experiences when professionals sought rapid answers to questions, notably about resuscitation, for which they were not prepared. These often occurred during times of great distress, when the patient was acutely ill, and relatives were struggling to come to terms with the gravity of the situation and the uncertainty of recovery. Consequently, the setting and context within which discussion of advance decisions occurred was an important determinant of patient and FCG experience and willingness to engage with the topic. 148

It might be proposed that it is precisely the purpose of advance discussion and documentation of wishes to pre-empt the occurrence of such situations. However, as Mol138 and others136,159–162 have argued, decisions by patients and FCGs are always hampered by the intrinsic uncertainty and incomplete nature of the information they have at their disposal about what is going to happen in the future and what is the best way to respond. Patients and FCGs (from any culture) tend to adopt a cautious, provisional and pragmatic approach to preferences for, and anticipation of, their future end of life, anticipating that these may change, as their illness progresses and their circumstances decline. 162 The current focus on ACP in the UK and other Western nations is underpinned by an ideological commitment to freedom of choice as a condition of individual autonomy. 154 However, the relevance of individual autonomy to the way most people live their lives, and in particular in isolation of their relationships with other people, is being called into question: the consumerist notion of autonomous ‘choice’ has limited relevance, particularly in relation to patients from ethnically diverse groups for whom individual autonomy may not be the predominant underpinning to decisions. 72,136,138,156,158,163,164

The limited and ethnocentric stance of current policy is underlined by consideration of the alternative approaches that have been identified in research from ethnically and culturally diverse groups. Respect for persons is manifest in the desire to protect the patient from an unwelcome truth, in the desire for the family or elders to assume responsibility for making decisions about treatment and in the commitment to care by family members, particularly of adult children for their parents. 99,106,136,156–158,165 A natural orientation to such approaches was apparent among many of the study cases. Alongside this was a strong preference by many patients to protect their family members from the burden of care and for their choices for treatment and care to be considered carefully in relation to their anticipated consequences for others. 72,138

Patient desire to reduce the burden their illness and death imposed on their significant others was a recurring theme, and was one reason for the very specific focus on making preparatory arrangements for after their death, especially the funeral. Thus, some patients expressed a preference to move from home to hospice once the demands of home care had become excessive, and to withhold information about their illness to protect individuals from distress. Just as HCPs search for a window of opportunity and assess the ‘readiness’ of patients to discuss EOLCP, patients and FCGs also exercise judgement and caution about what information about their future they wish to share and discuss with others, including HCPs. This prioritising of the interests of others can be viewed as a manifestation of agency and is also a reciprocation of the love, care and support bestowed by others on the patient.

Who to talk to about illness and when was influenced by perceptions of an individual’s situation. Information might be deliberately not shared with people who were themselves ill, who had experienced bereavement or who were thought to be in some way vulnerable. Patient awareness of the family suffering as a result of their illness was itself a source of suffering for the patient. The selection and management of information could be a means of patients asserting personal agency through protecting others from the distress and anxiety caused by terminal illness. Within informal networks it could be considered a form of reciprocal gift exchange, cementing ties of affection, obligation and responsibility. It could also be a source of conflict and tension, whereby individuals disagreed in their views about what information should be shared, especially with and by the patient.

In some families, EOLCP may not be something that members wish to discuss with HCPs. The family, or specific individuals within the family, may be considered the natural locus of discussion and decision-making in such matters. Thus, it is important for HCPs to be aware, and take account of, the nexus of relationships within which the patient is embedded, and to involve family members, as well as the patient, in planning and undertaking EOLC discussions. 166 In tension with this preference for fostering of optimism present in the majority of our case studies is the testimony of some bereaved FCG participants who, in retrospect, expressed regret that they had missed the significance of the final days or weeks of the patient’s life and perhaps even the chance to say goodbye. Regardless of what they had been told or understood, participants often seemed to have been taken by surprise by the speed with which the patient’s final decline and death occurred.

Prognosis, awareness of dying and reluctance to think ahead

Staff from disease specialist services such as oncology and cardiology largely expected colleagues from district nursing and palliative care services to initiate discussion of EOLCP with patients once they had exhausted all active treatment options and been referred to community services for ongoing care. However, prognostication, especially in relation to patients affected by conditions other than cancer, is notoriously difficult and prone to error. 167–170 The positive recovery orientation encouraged patients and families to maintain hope in the possibility of an extended future and to distance themselves from the imminence of death. 154,159,171–173 Having pulled through against the odds, on past occasions, FCGs proposed that the patient was likely to do so again, or at least they should be treated as if this was likely to be the case. There could be a lot of ambivalence about prognosis and how much people wanted to know about this and their future options. Moreover, preferences were not necessarily linear or stable. 138,162 Many participants preferred to maintain an overtly positive stance and to focus on making the most of the present, rather than an uncertain and probably unpleasant future. 72,164 Patients, FCGs and HCPs in many of the case studies converged in their view that there was no benefit, and could be a risk, in thinking too far ahead until the patient had become so gravely ill that death was clearly imminent.

Health-care professionals rarely expressed any awareness, or curiosity, about patients’ religious or other beliefs, their significance for EOLCP, how they should be factored into the discussion or how they might influence decisions about treatment and future goals of care. Patients and FCGs who held strong religious convictions about divine intervention regarded EOLCP as irrelevant and inappropriate. Indeed, when all matters of life and death were believed to be determined by a god, future planning could be considered presumptuous and indicative of insufficient faith. However, there was considerable variation and individuality in attitudes towards EOLCP and how participants positioned themselves in relation to religious or cultural affiliation. Preferences for resuscitation and continuation of active treatment, for example, could not be reliably predicted from knowledge of an individual’s religion or ethnic identity. Some families rejected DNACPR as being incompatible with religious faith, specifically the belief that life and death are subject to divine determination. Others had a purely secular desire to continue living for as long as possible, because of a hopefulness about the future and what this might deliver in terms of natural recovery or advances in treatment.

Language, communication and decision-making

Previously, we suggested that the optimistic recovery orientation often involved a degree of collusion between patients, FCGs and HCPs. This was an important mechanism for protecting others from damaging revelations and confrontation with unpleasant alternative truths, but it could also result in misunderstanding and false optimism among patients and family members, who failed to realise how seriously ill the patient was and how close to the end of life. Although this approach suited many participants, at least for a time, this vagueness and indeterminacy was regarded as highly unsatisfactory and intensified anxiety among patients and families who wished for clear and specific information about their illness and prognosis. Faced with very uncertain patient futures, HCPs were unable, and possibly reluctant, to pin down exactly when treatment might fail or deterioration might occur. However, HCPs had considerable power to frame information to influence patient awareness of the illness and the ‘choices’ with which they were confronted. 72,160,174 This was a much more general phenomenon than the blunt imperative for decisions to be made during acute hospital admissions, as described previously.

Regardless of the setting, HCPs raising the topic of resuscitation was a powerful signifier of the gravity of a patient’s illness and anticipated mortality: after discussion of DNACPR, the future abruptly felt shorter. It was clear that participants often did not have a clear or accurate idea of what resuscitation involved or the circumstances under which it would be attempted, or that it did not mean that treatment would be withheld for treatable or reversible conditions. However, several FCGs described situations when they felt that hospital staff had indicated that no further treatment of any kind would be given to their relative.

In discussions of resuscitation, professional input can be critical, in giving information, time, space, and repeated opportunities for patients and family members to reflect and discuss. Accounts of participants in this study identified their confusion and inconsistency in professional judgement and advice that had been distressing and, they felt, had resulted in poor care. It was evident, also, that some families disputed professional judgements about a patient’s quality of life being necessarily unacceptable following a resuscitation attempt, and disputed their capacity to predict prognosis. Others found the decision about resuscitation to be extremely difficult and one they were reluctant to accept.

Several participants described feeling under pressure from HCPs to agree to DNACPR orders and both lay and professional participants gave accounts of patients and FCGs changing their minds. It was not clear if this was following the chance for reflection and to obtain greater information and understanding, or if patients may have come under professional, family or other pressures to accept or make specific decisions. Especially when translators were required, it was not clear how much patients understood about future planning and decisions. Accounts of patient involvement in decision-making varied widely, from being actively in charge, through shared discussion, to family members taking full responsibility.

Some patients, especially those who lacked fluency in English, were reported never to see a HCP on their own, but always accompanied by at least one relative. Patients valued being able to communicate with HCPs directly in the patient’s first language. There were a few accounts of consultations in secondary care involving a HCP who could converse in the patient’s first language. These were off-chance encounters, following which it was unlikely that the same HCP would be seen again. If they cannot communicate directly with the patient, there is the potential that professionals may wrongly assume the locus of decision-making to be the family, especially in the case of older patients who rely on family members as translators and advocates.

Translators may act as gatekeepers, whether these are family members or professionals, framing and shaping patient understanding and choice. 56–58 Thus, patients who require translation may struggle to have their voice heard and HCPs may feel uneasy about a decision being in keeping with the patient’s wishes and best interests. Disclosing bad news requires skilled, empathetic communication, which is particularly difficult to achieve through third-party translation. Some relatives felt that HCPs had put on them the responsibility of translating on behalf of their parents, and recoiled from the decision-making responsibility, particularly about difficult decisions such as resuscitation, which they felt amounted to ‘signing a death warrant’ for their loved one. Thus, for some FCGs, being asked to act as an interpreter added to their emotional distress and burden of care.

Previous studies have reported that HCPs are dissatisfied with family members acting as translators because they suspect that they may be selective in filtering information given to the patient, and also will also find it difficult to explain technical details of illness and treatment options about which they lack knowledge and understanding. However, relatives are often reluctant to use translation services, from a desire to control information being conveyed to the patient, and also a concern about disclosing confidential information to strangers. It is evident that the need for translation continues to constitute a barrier to skilled and sensitive EOLC, particularly in a context of complex, challenging and difficult experiences relating to end of life in which, effectively, communication is care. 175 Wilkinson et al. 175 reported that understanding and effective communication were enabled by the availability of staff who could converse in a patient’s first language. The use of bilingual HCPs should be sought whenever possible. 56–58

However, even when consultations are conducted in English, it may be that patients and FCGs lack the fluency or cultural acclimatisation required to understand technical terms or pick up on the nuances of professional communication. In consultations involving participants from ethnically diverse communities, it is particularly important that professionals exhibit curiosity about patient and FCG understanding of the situation and interpretation of what they have been told, and elicit their concerns and expectations of illness progression and options for future care. This information must be placed within the context of the wider ecology of professional and informal care within which the patient is embedded and within which care is enacted. 166,176

Uncertainty is intrinsic to the experience and treatment of serious illness, and is a fundamental existential issue for patients and their family members. 138,150,162,177 Communication and decision-making occur against a backdrop of uncertainty through evolving prognosis linked to trial of treatments and progression of illness over time. 138 The centrality of uncertainty needs to be factored into all contacts and communication in health service consultations. The management of uncertainty has a powerful impact on patient and FCG experiences of illness and orientation to planning future care. For some patients, uncertainty can provide a justification for optimism and they can embrace the positive recovery orientation. For others, however, uncertainty can be profoundly unsettling. 150 The complex relationship between hope and uncertainty is dynamic. 128,162,178

A key message of the study findings is for staff to be aware of and responsive to patient and family experiences of uncertainty and to use this awareness as the basis for engaging in discussion of patient goals and values, rather than to evade the issue or seek to impose a formulaic agenda relating to ACP that derives from a narrow stratum of Western values centring on personal autonomy and decision-making. The findings also point to the importance of professional understanding of a patient’s informal network of support and awareness of the relational nature of decision-making.

Effective communication is pivotal to good care, and its centrality is reflected in the summary of our findings, ‘being known’ (termed with the Zulu word ‘sawubona’ in our key study outputs), presented in Figure 5. There is much evidence about what constitutes effective communication with patients about future illness progress and end of life and, specifically, in engaging people in an ‘end-of-life talk’. 179,180 However, there is scant literature on the additional attributes of such conversations with people when English is not their first language, when translation is required and when there may be disparities in conceptual understanding of health, illness and care provision. This study has highlighted the importance of professional awareness of these elements as an area for further research.

FIGURE 5.

Enablers of ‘knowing’ ethnically diverse patients and families to optimise EOLC.

Models of care

UK health policy is based on the idea of the patient as an autonomous decision-maker. The realisation of individual choice in EOLC, especially regarding place of death and preferences for or against treatment, is regarded as a marker of quality care. 10,158,161,181 However, recent research and associated critiques have cast doubt on the extent to which these policy assumptions represent the lived experience and concerns of many patients in the general population. 182–184 Instead, patients are understood to operate within a field of relational autonomy, where the decisions and choices are made with reference to, and mindful of the effects on, significant others within a social network. 137,138,159,185–187 This collectivist model of decision-making is recognised to be particularly relevant to patients from culturally and ethnically diverse backgrounds. 60,132,136,156–158,163 In these contexts, the locus of decision-making is often a joint responsibility, vested in the family group, and sometimes requiring concurrence from elders or respected non-family community or faith leaders, rather than the individual.

Degrees of individual family commitment to patient care very much affect their attitude and receptivity to accepting support from sources outside the family. In the Thinking Ahead study, varying levels of commitment appeared to be driven by profound personal attachment and close family ties, as well as by a sense of family, cultural and religious duty, and responsibility. This may include, for some individuals, a desire to accrue religious merit in line with their faith beliefs and a desire to avoid censure from the wider family or community. In some cases, adult children expressed concern about being criticised by their wider family or community if they were seen to fall short of expected commitment to care for their parents. This consequential stigma appears to be an important determinant of the family’s willingness to seek out and accept external help, especially regarding personal care and social support or care in a hospice or care home.

There was considerable variation between individuals and families in relation to closed or open awareness of a patient’s illness and prognosis and the extent of discussion and sharing of information between the patient, FCG and other relatives. 148,154,188 Preferences varied widely regarding what individuals wanted to know about illness and prognosis, even within the same family, generation and cultural or religious group. 189 The extent and composition of individual family networks also shaped how and with whom information was shared. There was also uncertainty about what different family members and the patient knew about the illness prognosis, who had talked to different professionals about this, and whether or not and how information had been relayed to others, within professional and informal networks. Some decisions were prolonged and distributed, seeming to require consensus among patient and family members, but the locus of decision-making could be configured differently across cases. This was largely determined by individual circumstances, of family composition; location; personality; religion; and cultural norms about family responsibility, engagement and authority. It was not the case that all patients had access to extended family support, and even when they did, some families struggled to provide this. Small, dense networks tended to be self-contained and seemed less likely to have established extensive contacts with health and social services.

This accords with Granovetter’s190 thesis that ‘weak’ ties connecting individuals within a network to external persons and agencies are more likely to provide access to information and resources than a strongly embedded tie. 191 Thus, although our data can be suggestive only, it may be that families that are insular, including those who have access to a GP who speaks their first language, and typically with elderly parents who do not want to accept outside help, are more likely to be disadvantaged in terms of the information and support they could effectively access. Conversely, within families that include a strong advocate, typically an adult child, who takes an active stance in relation to contacts with health and social services, and is willing and able to challenge these and follow through requests for support and information (e.g. through direct contact with different HCPs and services, who/which themselves are linked to wider points of contact and referral within the professional network), that advocate is an agent for extending the network of care around the patient.

Navigating a complex system of health care

Patients and families confronting the end of life enter an alien world, full of uncertainty and the need to engage with, usually, many different professionals and services. 138,150,177 May et al. 192 and Mair and May193 have drawn attention to the ‘burden of care’ imposed on patients and their families in the course of receiving treatment and services from a complex system of care. Several FCGs were exasperated by the demands imposed by an ongoing series of referrals and appointments for which they could identify no purpose or helpful outcome. Other participants described confusion, misunderstanding and lack of information during their experience of care. The difficulties posed by system complexity have been widely reported in the literature. 194 Stacey et al. 148 highlight the significance of institutional and organisational factors in shaping how resources such as time, expertise and resources are able to flow through complex systems of care. They identify the increased specialisation of professional roles and the consequent fragmentation of patient care as important factors contributing to the lack of effective communication and awareness of patient prognosis and future illness trajectories.

In the Thinking Ahead study, some patients and, more usually, their family members were skilled and effective mediators and advocates, with the ability and resources to find the information they needed. These skills developed with experience, sometimes in relation to the illness and death of more than one relative. In addition, some participants were, or had been, employed within the NHS in some capacity. However, the situation was very different for patients and FCGs who were unfamiliar with the system and lacked the confidence or fluency in English to communicate effectively with staff or achieve an understanding of their entitlements, especially if they lacked family support and translation.

A few patients described long-term relationships with specialist nurses, but the nurses, by their own admission, rarely engaged in discussion of planning of EOLC and did not, from the accounts available in the study, have a deep knowledge or understanding of the patients’ wider circumstances and concerns. Several HCP participants expressed surprise that they had been nominated to take part in the study because they had only brief or superficial contact with the patient. Few participants described a relationship with a HCP who could be described as occupying the role of ‘key worker’, a ‘go-to’ person who helped them navigate the complexities of care and whose sense of being available enabled the patient and FCGs to feel ‘safe’ within the system. 194 The experience of uncertainty, unfamiliarity and lack of information prompted a stance of vigilance on the part of relatives. A particular issue was the concern to ensure that cultural and religious practices relating to diet, hygiene, ritual purity and dignity should be observed during interactions with health and social care staff. For some families this was a motivation for refusing or limiting outside help. Hospitalisation was a particularly challenging experience, especially for older patients and those who were not fluent in speaking English. This is a known issue within the research and policy literature and should be on the agenda of things to address of all services.

Participants’ experiences of EOLC was shaped by the organisation of services relating to a patient’s illness and treatment needs and how these related to each other. This created subtle forms of disadvantage. Many different services and HCPs could be involved in each case and as the patient’s needs changed over time. However, some services, notably those for patients with MND, enabled a degree of continuity of care that was not available to most patients with cancer and other illnesses. In relation to other conditions, particularly cancer, patients tended to move through a process of referrals and to be seen by many different services and HCPs. 148 Participants described complex processes of referral to different types of test and treatment, and discontinuity of care and poor communication between staff from different services. It was not clear to individual patients, FCGs or HCPs what different individuals knew or had been told and had discussed with others. In addition, the boundaries of responsibility for discussing EOLCP were not clearly demarcated.

These are likely to be contributory factors underlying the reported vagueness of professional communication. In addition, patients and FCGs described their frustration at constantly having to tell and retell their story to the different HCPs they encountered during consultations and their sense of not ‘being known’ within the system, or the system ‘not knowing’ where patients were at any point in their process of care and referral. A great deal could hinge on chance encounters with individual HCPs, at any point in the treatment process, who proved to be particularly forthcoming and effective communicators. However, patients had no means of maintaining contact with such helpful individuals, who were likely to be replaced by other colleagues during subsequent appointments and consultations.

The centrality of effective care co-ordination in easing the experience of families negotiating their way through a complex system of health care was evident in the specialist MND nurse’s account of her role as a key worker accompanying patients from the moment of referral after diagnosis to the end of life. The study findings also highlighted the variability and ambiguity of the FCG’s role as advocate and decision-maker for the patient, especially when they also take on, or are co-opted into, the role of translators in medical consultations.

Being known: summary of the findings of workstreams 1 and 2

Family caregivers and HCPs often oriented to a positive recovery orientation unless and until the patient’s condition deteriorated to an extent that the imminence of death was clearly apparent. For some patients, not knowing their poor prognosis was a prerequisite for maintaining hope, optimism and engagement. Even in specialist community and hospice settings, professionals described not raising discussion of future goals of care or EOLCP until the illness was at an advanced stage. However, it could be hard for the minority of patients who did want to be fully informed about their illness to establish a clear prognosis. Moreover, there is a risk that, in leaving discussion of EOLC until patients are ‘ready’, or at least very close to death, professionals may never initiate a conversation that would have been of value, as some BFCGs subsequently reflected to be the case. Thus, there is a tension between the need to respect patient preferences, the negative consequences of revealing information about the future for which the patient and FCGs may not be ready, and the adverse consequences of families being confronted by crisis situations for which they are not prepared.

The clinical setting had a significant impact on the experience and content of thinking-ahead discussions. Families found being put under pressure to make decisions about whether or not their acutely ill relatives should undergo resuscitation following the stress of unscheduled hospital admission very difficult, and described professionals being brusque and lacking empathy. In contrast, when professionals in community settings, GPs or nurses took on board the need for the patient and family to engage in EOLCP and made time specifically for this purpose, participants reported a more positive experience.

A key issue is the very varying experiences of care reported within a complex system, including the type of illness, the services referred to, the relationship with individual professionals, experience of continuity or fragmentation of care, and the nature and availability of family support. In the absence of any clear demarcation of responsibility for staff to raise the topic of EOLCP, including in community and palliative care services and hospice, staff may be wary of raising the issue. This is possibly for good reason, since their judgement seems to be in accord with the preferences of many patients. However, some individuals were frustrated or felt disadvantaged by not being able to find a professional who would tell them what they wanted to know. The outcome may be (a possibly needless) anxiety or being misled into a false sense of security.

Many participants oriented to a collectivist or shared model of decision-making and responsibility regarding EOLC. This gave rise to tensions within some families and highlights the different agendas and values with which patients and family members may be operating. It contrasts with the foregrounding of individual autonomy and best interests embedded in consent and decision-making processes in health care, including EOLCP. Patients’ primary motivation in thinking ahead was often to protect their significant others by lessening the burden of care and responsibility resulting from their illness. These responses apply to all sections of the population, but have been highlighted in this study of patients and FCGs from ethnically diverse populations.

In contrast to ‘the logic of choice’, Mol138 has proposed that health care be informed by ‘the logic of care’. This underlines the limitations and precarity of forward planning based on formulaic tasks and oversimplified decisions. Instead, professionals need to engage with uncertainty, their own as well as that of patients’, and to exercise curiosity about patient agendas and their perspectives and goals regarding knowledge of their prognosis and future care. 138 Decisions may be pragmatic, provisional, tentative and changing, as patients learn how they respond to situations that may have been beyond their imagination previously. The professional’s role is to accompany the family in the moment and support their readiness to deal with challenges and the decisions that need to be made as these arise. 72,195

However, the current configuration of services makes it difficult for patients to experience sufficient continuity and consistency of care and for professionals to develop sufficient knowledge of the person to generate the trust required for patients to feel confident in their support. ‘Being known’ and ‘being seen’ are key desires of patients and are enablers of good care, including personalisation of discussions about deterioration and planning care for the end of life. Our model of the determinants of ‘being known’, and the enablers of this, is derived from the study data (see Figure 5).

We have suggested that an allocated key worker could be a valuable resource in providing continuity and helping patients, especially those experiencing additional vulnerabilities and inequities; navigating the complexities of health care; and translating between language and culture. It turns out, unsurprisingly, that, at a macro level, good care looks largely the same, regardless of ethnicity: personalised, compassionate, holistic and safe. Understanding participants’ experiences and aspirations for care in the Thinking Ahead study provides a powerful lens through which to view and calibrate these components and the nuances of care for all patients confronting the end of life.

Stakeholders’ views on the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning

Strengths and limitations of the study

The diversity of participants in the study is both a strength (in terms of including a wide range of experiences and perspectives) and a limitation. We have tried to include a broad ethnic diversity in the sample, but acknowledge that we could not include all groups; for example, Jewish, Gypsy, Roma and Irish Traveller communities were not included. Alongside ethnicity and faith, our sample included diversity in family and social circumstances, and in illness type, including two case studies of patients who lacked capacity; five participants were enabled to contribute through a professional interpreter and one by a bilingual researcher. The intention of the sampling frame was to explore the broadest diversity of experiences in the constraints of the project. However, this inevitably compromises, to some extent, the depth of understanding of specific experiences and issues related to discrete groupings of faith, ethnicity or culture. The study was pragmatically limited in its geographical recruitment to include two areas of the East Midlands. Each has somewhat differing ethnic demographics.

Most participants were recruited via three hospice services, which means their accounts may reflect experiences of a distinctive type of specialist care, available to a minority of terminally ill patients. 150 The majority of cases were identified and first approached by HCPs with whom the researchers had discussed the study eligibility criteria. However, several patients did not seem to consider themselves, nor were they considered by their nominated HCP, as being close to the end of life. Although these data may be outside the study’s original remit, they serve to highlight the variable and uncertain nature of prognosis in relation to terminal illness and the real-world challenges in integrating discussions about potential future deterioration alongside care of patients in stable and active treatment contexts.

Serial interviews by the same researcher in WS1 built rapport with patients and FCGs, allowing increasing depth of disclosure about participants’ experiences and feelings, and allowing a view, over a period of time, of the unfolding nature of their lived experience. We were also able to triangulate different perspectives from patients, FCGs and HCPs relating to experience and involvement in the same case. The richness of the data and the range of themes that emerged are strengths. The ‘messiness’ of life and the considerable labour in living with advanced illness is reflected in the accounts and in the logistical arrangements of undertaking the interviews. These are not sanitised accounts and give confidence in the veracity of the data, providing insight into the participants’ reality.

Many patients and families found it quite difficult to identify a HCP to nominate who they felt was to be closely involved in their care. All 11 of the nominated HCPs in WS1 were nurses. Consequently, the data do not encompass the perspectives of the wider clinical care team for an individual patient, including those of professionals, especially doctors, who may have a different approach to offering conversations about preparing for future deterioration and end of life. The need to stop data collection involving HCPs from March 2020 because of the COVID-19 pandemic meant that seven out of 18 cases did not contain HCP perspectives. Similarly, clinical notes were available for only 13 out of 18 patients. However, there were only three cases for which there was little or no additional information or representation of health-care perspectives outside the family.

The setting in which participant accounts were elicited is an important factor influencing their content, for example whether the interview was held in private or with one or more individuals, including an interpreter. Patient and FCG interviews were mostly held in the participant’s home. The use of translators enabled recruitment of patients who are normally excluded from research, which is a strength of the study. Issues with translation (in four case studies and one BFCG interview) and how these were handled are discussed in Chapter 2, Workstream 1: longitudinal patient case studies. However, as discussed previously in relation to clinical consultations, some degree of detail and nuanced meaning is inevitably lost in translation.

During case study interviews, most participants were asked if the experience of taking part in the research had influenced them in any way. In three cases, participants explicitly said that they had been prompted to reflect and to think a little more about what the future might entail (this included the idea of thinking ahead about end of life). In a couple of cases, participants’ reflections had led them to consideration of further practical help they might seek. At least two HCPs expressed possible changes in their practice, in particular related to knowing more about their patients and their potentially diverse needs. Some participants described interviews as being emotionally burdensome, causing anxiety, whereas others reported them as positive or even cathartic. Distress management of participants required careful consideration, particularly when using interpreters. Researchers also found interviews to be emotionally challenging. A pyramid of support needs for participants was in place, and preparatory and reflective resilience work, alongside regular support meetings, were provided for researchers.

Implications for health professional practice and training

Health professionals in the case studies and stakeholder workshops described approaches to the complexities and uncertainties involved in initiating EOLC discussions with patients and FCGs from ethnically diverse groups. HCPs have the advantage, but also the responsibility, of anticipation, from past experience and the literature, as to what may lie ahead for patients and the imperative as the expert guide to balance the present well-being of the patient and family with the potential regret in future. There was considerable reflection on the need to recognise and wait for when a patient may be ready for ‘end-of-life talk’ as their illness worsened. There was scant detail, however, on what the skills and attributes of this required and looked like in practice.

End-of-life care planning documentation is seen in policy as the predominant vehicle for enabling good EOLC, but this may be in tension with the preferences and values of patients. In particular, collectivist models or responsibility for care and decision-making is directly at odds with the commitment to patient autonomy and choice that underpins professional policy and practice. How HCPs assess and navigate the potential for harm in this policy context needs to be widely discussed and clarified. There is currently a risk that emphasising difference results in marginalising and stereotyping patients and overlooking both the heterogeneity of individuals within diverse groups and what is common to the experience of good EOLC for all patients, regardless of ethnicity. Good practice currently orients to encouraging patients to conform to UK policy and practice, so that diversity is seen to constitute a barrier, rather than a manifestation of alternative values and preferences. In addition, the predominant stance of patients was one of hopefulness, and for some it was against their religion to engage in planning for the end of their lives. Current policy aims for patients and FCGs to change their perspective, and reluctance to plan ahead is constituted as a problem. Within cultures oriented to a collectivist and relational approach to decision-making, or religious beliefs about the absolute nature of divine intervention, it is the assertion of autonomy that may be considered unsatisfactory.

The findings from the Thinking Ahead study are supported by those of previous research in reporting that many HCPs do not perceive engaging in EOLCP to be within the remit of their role. Among those who do, there is often a reluctance to raise the issue. Professionals wait for an indication of patient ‘readiness’ and tend to postpone discussion until the patient’s health has deteriorated to the point that death is clearly imminent. Our findings suggest that this approach is broadly aligned to the preferences of many patients. The desirability of otherwise routinely initiating such discussions pre-emptively, at a much earlier stage of a patient’s illness, may be debated. However, a significant minority of patients want to be informed and aware of their prognosis and are disadvantaged by the deferment of discussion about their options for future care and how this will affect the plans they make for the life they have remaining. A key task of HCPs involved in supporting patients through serious and terminal illness is to elicit patient preferences for future planning and respond appropriately.

Thus, professionals require high-level skills to navigate complex, sensitive communication and interpersonal relationships that foster appropriate discussions and planning for anticipated deterioration, when patients and FCGs wish to discuss this. In relation to ethnically diverse patients, this could be fostered by an integrated team approach that includes members with skills in language and cultural bridging or advocacy. Enabling patients to communicate confidently in their preferred language is an important means of reducing disadvantage. However, systemic support needs to be more effectively attuned to the values and sociocultural contexts of patients and families regardless of ethnicity, and to provide relational and service continuity to deliver sensitive and personalised care.

It is important to provide HCPs with the training they need to support skilled and appropriate discussion of EOLCP, including through translators. However, it is also important to acknowledge the systemic barriers to such discussions. These include the ways that health care is organised and staffed, particularly the fragmented nature of services, which block the transfer of information and co-ordination of care across a complex network. In addition, the intractable nature and pervasive influence of prognostic uncertainty and the influence of spiritual values on hope and value of life should be acknowledged as major barriers to the discussion of EOLC and as existential issues with which patients and professionals have to engage.

Implications for research

Our findings suggest prioritising the following research questions to benefit patients. Such research must include participants from ethnically diverse communities, including those who would want to contribute in a language other than English.

1. How can health professionals identify if/when a patient is ‘ready’ for anticipatory discussions of deterioration and dying?

2. How can discussions about uncertain recovery and the need for decisions about ceilings of care, especially resuscitation, be most effectively conducted in a crisis?

3. How can professionals recognise and respond both to the diversity of faith and cultural practices among different ethnic groups and to the heterogeneity of beliefs and preferences relating to EOLC between individuals from different ethnic groups?

4. What are the implications of an understanding of collectivist, relational and faith-led models of care and decision-making for current UK health policy and practice and their focus on individual choice, autonomy and anticipatory planning?

5. How can conversations be most effectively conducted when translation is required to enhance patient understanding?

Conclusion

The findings highlight the unique nature and experiences of every patient and family and the differences between individuals within the same family and ethnic group, as well as between ethnic and faith groupings. The overwhelming impression of these accounts is their diversity and real-world complexities, the ‘messiness’ and challenges of life when someone is progressively approaching death. For each individual patient and family, the specific details of how, when and if they want to engage in thinking about the future and develop anticipatory plans are singular and emergent. They are rooted in uncertainty and coloured by past experiences of the deaths of family and friends; by the intersectionality of ethnicity, educational attainment, socioeconomic status, available health care and other factors; by values and beliefs; by information and understanding; by trust in organisations and individual professionals; and by experiences of an often unco-ordinated and complex health-care system.

The data reveal many similarities in the experiences of EOLC and communication between patients and FCGs from ethnically diverse groups and those from the wider UK population, and in their responses to EOLC and communication. People from ethnically diverse backgrounds want compassionate care that is personal to them. This is no different from people from white British backgrounds, as is well described in the literature, and supports the use of physical, social, spiritual and psychological care frameworks used in palliative care to address the individual needs of patients and families. However, HCPs need additional skills to navigate complex, sensitive communication and enquire about spiritual values and aspects of people’s lives that may be unfamiliar. The data show that there are clearly distinctive aspects of the experiences and circumstances of patients and FCGs from ethnically diverse communities that compound their difficulties in achieving good care. Deficits in communication, especially involving translation, misunderstanding and lack of information result in patients falling through the cracks in services and suboptimal experiences of EOLC.

Personalising care requires HCPs to get to ‘know’ the person, and the development of confidence and skills in discussing EOLC with persons from ethnically diverse backgrounds is vital for enabling tailored responsive discussions that are of real value to patients and their families. Training resources, using stories based on our interviews, were seen as an effective way to support this.

Finally, the data reveal the rather marginal position of professional input in people’s lives. Most of our participants orientated their lives to getting on with the challenges of living in the present, rather than dwelling on the future: being positive, holding to the essence of faith and all things being in god’s hands, and fear and avoidance of future talk. A minority did seek to think and plan ahead and sought information and discussion to support them in this. Participants had difficulty in nominating a HCP who they considered had a significant role or any sense of accompaniment in their illness. HCPs came into their lives at times, but there was little sense of continuity of care or of professional support to accompany and think with them as their health deteriorated towards the end of life. Patient and FCG participants described an experience of care that was often fragmented and unco-ordinated. Workshop stakeholders proposed more effective sharing of information between multidisciplinary professional teams as a prerequisite to enabling more tailored and effective care. Effective communication and trusted individuals sharing information in an easier way was seen by stakeholders as important in providing better care.

Working with diverse ethnic and faith communities

Throughout the project, working collaboratively with the PCBR group and the PPI co-applicant (described in Chapter 3) and working with the LOROS Hospice community outreach team, we have continuously built engagement with the diverse ethnic communities of Leicester and Nottingham. Building trusting, collaborative relationships takes a great deal of time, especially with communities that are more recently established and have less developed engagement with systems and organisations. Successful community engagement requires collaboration with people of the community, taking an assets-based approach and that activities take place within the community: to go to where people are, alongside those they trust and respect. 119,120

In the first 2 years of the project, we sought to build awareness about the work and to enable the broadest diversity of recruitment (described in Chapter 2, Recruitment). As discussed in Chapter 2, we contacted 177 community groups and community and faith leaders, and the research team was invited to 15 events. This engagement formed a good platform for our dissemination work in the last year of the project, when we sought to share the key messages and to increase collaborative working so that the project may lead to real change for people in their experiences in the last months of their life, when they are dying, and for their families and communities in bereavement.

One impactful aspect of our engagement and dissemination work has been through community radio based in Leicester, Ramadan FM (a pop-up radio station)197,198 and EAVA FM. Both have a social media presence promoting access beyond the live broadcast.

EAVA FM ‘take over’, July 2021

EAVA FM is a multilingual radio station broadcasting programmes to meet the needs of all, including new migrant communities. Its objective is to socially develop, inform and entertain, which comprises a combination of local news, enterprise, music, information, and cultural, faith and educational programmes, all supported by community members and local stakeholders.

Collaboration between the PPI co-investigator (IM) and the station manager led to a daily broadcast for 6 days in July 2021, discussing the research, and end-of-life experiences and services. The programme host focused on Somali, African Caribbean, Polish, Hindi-speaking, Gujarati-speaking and other Asian communities. The interviews can be viewed online. 199

Community radio engagement enables layers of impact. First, there is the broadcast itself, which is listened to live or on-demand on the radio or via social media channels. Engagement with the live show through viewer comments online and through ‘call-ins’ were very few (two or three per show), but indicated a very meaningful impact on listeners in some of their comments. For example, people connected the need for more awareness of PEOLC issues with barriers and stigma within their communities that needed to change. Metrics, beyond ‘views’ and ‘likes’ on YouTube (YouTube, LLC, San Bruno, CA, USA), uploads and tweets, of the reach and impact are difficult to obtain, especially in such a sensitive topic considered as taboo by many. We know from the radio hosts that many conversations were stimulated and that people, although hesitant, wanted to explore the topic further, but we cannot measure these in number or impact.

Second, the hosts of the radio shows are trusted and respected members of their communities with a high profile, some with national awards for services to their communities. They are highly motivated to reduce hardship and inequalities in their communities. Their feedback to us after the week of EAVA FM broadcasts showed that, despite, for some, their own discomfort with the topic, they held a deep commitment to achieving change and a desire to engage and collaborate further on initiatives. One such collaboration on a proposal for community-based bereavement support has already been submitted for consideration.

Third, through the trusted radio show hosts, new networks can be built. Such new networks have been used as part of our dissemination and impact strategy by the CNLWs, whose activities and impact are detailed below. This endeavour goes beyond what was anticipated in the project plan and illustrates how impactful dissemination must be flexible enough to be pertinent to the target audiences.

The work with community radio is ongoing, with open invitations to return to share more activities and messages for the communities that the station serves, and we continue to build on these relationships.

Community Network Liaison Workers

In June 2021, when the possibility of more face-to-face activities opened up, we recruited three part-time CNLWs. We were fortunate to find three bilingual/multilingual people with the availability, experience and drive to reach out to the communities in Leicester and Nottingham, to go where they are, to discuss the findings of the study and to build collaborative relationships to take forward future work to achieve real change. We needed to develop their skills in this research role, their understanding of the findings, their confidence in discussing end of life and dying, and their knowledge about services that can be accessed, including myth-busting about hospice and palliative care services.

Between 23 July and 13 September 2021, the CNLWs facilitated discussions at 16 events with 106 people. The events were diverse and included selective and open groupings: groups at places of worship, women’s groups, a diabetes self-help group, a Bangladeshi community bus trip, picnics, a cultural festival and a young person’s group. The majority of people were from Asian communities, but there has also been contact with Jewish communities. Other communities were not able to be reached in this very short time frame.

The CNLWs used a number of resources to promote discussion and share information, including some of the evidence-based narratives described below.

The CNLWs focused discussions on:

1. understanding of what a hospice is and the services they provide

2. understanding of end of life and services that might be useful

3. EOLCP and the use of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT)200

4. discussing planning ahead about their own/their family member’s end of life.

When possible, Likert scales were completed at the beginning and end of each event assessing people’s views on these four areas.

Key findings so far

The events had a considerable impact on what people indicated about their understanding and likelihood of thinking ahead and planning about their own end of life, as shown in Figure 6.

FIGURE 6.

Mean score of participants at the beginning and end of a community event.

It was evident that most people had little knowledge of this area. The majority knew very little about what a hospice is or EOLCP, unless they had direct experience of a relative being terminally ill. Views about hospices were shared and misunderstandings and ‘myths’ (such as thinking hospices were a place where you will be left to die without any food or water) were discussed and corrected. Discussions about trust in health services and HCPs were especially layered in the context of COVID-19 and vaccines. It was also evident that there was an appetite for knowledge and sharing and that such discussions were welcome: ‘Yes, you need to go to communities to engage them on this topic so that it becomes less taboo’, ‘It has been quite therapeutic; we don’t talk about these things and today we have all shared our personal feelings’.

The key messages so far are that people:

1. want to know more and also want an opportunity to visit a hospice

2. wanted to know more about the ReSPECT.

Their suggestions as to what would be useful are as follows:

1. more discussion groups in the communities in different languages

2. most welcomed more discussion face to face

3. to put leaflets in the doctors’ surgery, library

4. talks on the radio and places of worship

5. it should be taught in schools

6. the information should be made available online and on social media for young people

7. they wondered if there could be information accessible via an app.

Training for professionals

Open-access e-learning

A key objective of this project is to produce resources to be used in training and self-directed learning by health and social care professionals. With NHS e-Learning for Healthcare, we have developed an e-learning module within the End-of-Life Care for All e-learning programme. The content of this module integrated findings from WSs 1 and 2 with the thematic analysis of the data from professional participants in WS3, informed by NPT and the use of BCTs. The module has also been shaped at various stages of development by feedback from professionals.

The module is available free to health and social care staff online (www.e-lfh.org.uk/programmes/end-of-life-care/).

National Palliative and End-of-life care Education Think Tank

All staff are prepared to care

Wherever I am, health and care staff bring empathy, skills and expertise and give me competent, confident and compassionate care.

Our impact plan for the project included the development of a new initiative to bring together high-level professionals across a diversity of stakeholder organisations that plan, commission, deliver and monitor training for HCPs and their competence in delivering patient care. We worked with the NHS England and Professor Bee Wee (NHS Improvement National Clinical Director for End-of-life Care), and Anita Hayes (the Hospice UK Head of Learning and Workforce), to host two events. The first event was face to face and was before the COVID-19 restrictions; the second, in November 2021, was virtual to meet COVID-19 restrictions. The organisations represented are shown in Box 2.

BOX 2 - Organisations represented at the PEOLC Education Think Tank

NHS England

General Medical Council

Foundation Programme

Nursing and Midwifery Council

Macmillan Cancer Support

Hospice UK

Sue Ryder

South East Coast Ambulance Service NHS Foundation Trust

National Association of Clinical Tutors

British Islamic Medical Association

Cicely Saunders Institute

Medical Schools Council

Care Quality Commission

NHS e-Learning for Healthcare

Association for Palliative Medicine of Great Britain and Ireland

NHS England and NHS Improvement

Health Education England

NICE

Walsall Healthcare NHS Trust

LOROS Hospice

Derbyshire Community Health Services NHS Foundation Trust

University Hospitals of Leicester NHS Trust

Together for Short Lives

College of Paramedics, Royal College of Physicians, Royal College of Nursing, Royal College of General Practitioners

University of Hertfordshire

University of Leicester

University of Nottingham

University of York

The first event discussed what each organisation was doing to ensuring workforce competence to achieve the pertinent stated ambitions endorsed by NHS England (see Figures 7 and 8) and competence in personalised PEOLC as described in the NHS Long Term Plan,205 which focuses especially on increasing the percentage of people who have been offered personalised care and support planning at the end of life. 141

FIGURE 7.

The six ambitions for PEOLC, National Palliative and End of Life Care Partnership.

FIGURE 8.

The building blocks for ambitions: all staff are prepared to care.

The following themes were discussed:

1. barriers to and enablers of preparing staff to care

2. the NHS culture for staff learning about EOLC and using their skills effectively

3. developing competence in honest conversations

4. using technologies in learning and assessment

5. implementation of standards and guidance in practice.

The group agreed that the meeting had been very useful, that there was a real need to improve education and training, and that there is value in doing this in a collaborative way.

A common focus was desired, and this was agreed as enhancing the workforce delivery of skilled honest and open conversations, including about deterioration and dying, to prepare staff to achieve ambition 1, each person is seen as an individual: everybody should have the opportunity for honest and well-informed conversations about dying, death and bereavement, and the NHS plans for personalised EOLC.

The importance of the competence of the health-care workforce in having open and honest conversations with patients and their families about deterioration and dying, and offering opportunities for personalised care planning, was dramatically foregrounded by the COVID-19 pandemic. The number of patients who were at risk of deterioration, the forced remote consultations and the diversity of staff who were caring for dying or very vulnerable patients meant that gaining skills and confidence in such conversations became a priority and greatly accelerated the development of resources and training.

The second event, delayed because of the impacts of the COVID-19 pandemic, was held in November 2021 and focused on supporting people from diverse ethnic and faith backgrounds.

Governance and approvals

The University Hospitals of Leicester NHS Trust was the study sponsor (reference number: IRAS 251664 Edge111248). NHS Research Ethics Committee approval was obtained in December 2018 (reference number: 18/WM/0310), with two subsequent substantial amendments (May 2019 and March 2020). Health Research Authority approval was obtained on 4 December 2018.

Contributions of authors

Zoebia Islam (https://orcid.org/0000-0001-9274-694X) (Senior Research Fellow) was responsible for study conception, project management, design, data collection, analysis and writing of the final report.

Kristian Pollock (https://orcid.org/0000-0002-6836-8595) (Professor of Medical Sociology) was responsible for study conception, design and delivery, data analysis and writing of the final report.

Anne Patterson (https://orcid.org/0000-0002-9105-9248) (Research Fellow) was responsible for data collection, analysis and writing of the final report.

Matilda Hanjari (https://orcid.org/0000-0003-0001-0797) (Research Associate) was responsible for community engagement, data collection, analysis and writing of the final report.

Louise Wallace (https://orcid.org/0000-0003-3770-0580) (Professor of Psychology and Health) was responsible for project oversight and advisory support, data analysis and writing of the final report.

Irfhan Mururajani (https://orcid.org/0000-0002-2624-9301) (PPI representative) was responsible for project oversight and advisory support, data analysis and dissemination, and writing of the final report.

Simon Conroy (https://orcid.org/0000-0002-4306-6064) (Professor of Primary Health Care, Faculty of Medicine and Health Sciences, University of Nottingham; Professor of Geriatric Medicine, University of Leicester) was responsible for project oversight, clinical expertise and advisory support, facilitation of recruitment and liaison with health professionals and services, and reviews of the findings and of the final report.

Christina Faull (https://orcid.org/0000-0002-0064-8056) (Consultant in Palliative Medicine, LOROS Hospice, and University Hospitals, Leicester): Study conception, design, data collection, data analysis, clinical expertise and writing of final report.

Ethics statement

NHS Research Ethics Committee approval was obtained in December 2018 (reference number: 18/WM/0310) from West Midlands – Coventry and Warwickshire Research Ethics Committee.

Data-sharing statement

This is a qualitative study; therefore the data generated are not suitable for sharing beyond those contained in the report. Further information can be obtained from the corresponding author.

Patient data

This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data are used. #datasaveslives You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation.

Disclaimers

This report presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.

Mr Chahine

Mr Chifamba

Mrs Curkovic

Hafsa

Hafsa is an elderly Indian Muslim woman who has had a stroke. Her daughter has moved into her house to provide her care.

Key themes: autonomy and decision-making complexities of family culture. Knowing the patient. Communication.

The photograph has arrived of my cousin’s baby daughter, in a pretty pink frame too, ready to be put on the wall with the others. It’s what Doctor Lakhani talked to me about on her first visit, before anything else. Who all these people were, my very large family, from near and far. I could see my son was becoming annoyed, even then, wondering why she was spending time concerning herself with these photographs when there were far more important things to discuss.

She’ll be here later today, and it’s always nice to see her, even though I can’t talk to her anymore since the stroke. I miss it. All those conversations over several months. It was always so interesting, not what you’d expect from a doctor. She reminds me of myself a little when I was that age, although she’s far cleverer and kinder than I could ever have hoped to be. And she’s the last new friend I will make; although I’m not stupid, I know that I’m just one of her many patients. But I enjoy her company and she’s in my house so if I want to call her a friend then I can.

I’m not afraid of what’s coming. I know that I’m very ill. The last 2 years have been spent with the doctors and surgeons prodding and poking, but I’ve had a good life and now my son and daughter look after me, which is all that a mother could want. When I came back from the hospital, the room was newly painted with a vase of roses on the bedside table. It was strange at first, sleeping in the bed which had been moved so that now I look towards Mecca, though it’s not so easy to see the neighbour’s cherry tree, which will soon come into blossom.

My daughter stays here and cares for me and my son comes every day to help me perform my ablutions and recite Ya Seen Surah to me, now that I cannot speak the words of Shahadah, nor even mumble La ilaha illal-lah.

My son is such a devout young man. When Doctor Lakhani said that we might want to consider some help with home care if things became difficult, I could see he wasn’t pleased, although he is very polite and would never say what he thought until she left. That Allah will turn his face from those who do not care for their dying parents, that carers could not fit their schedule around prayers. That there are so many little things that he and his sister do every day that need to be learnt. How to cut up my food so that I can swallow it easily. How to move me gently into my wheelchair for my favourite walk around the park. The jewellery I like to wear on certain days.

I told them that the doctor is a good woman who is thinking of what is best for all of us and that, in this case, perhaps having a carer come to visit might be acceptable. Especially with my daughter looking so tired. But none have come, and I have to accept that it’s up to my children now to decide how things should be. And not being able to talk means it’s easier if I just accept everything that they do.

I think they might be seeking guidance though because during the last visit, Doctor Lakhani suggested bringing medicines to the house in case things became very difficult. And later the imam came round, and my son closed the door so that I couldn’t hear what they were talking about.

Sometimes I would like to be alone with the doctor even if I can’t tell her the things that I want to. I can sense her trying to hear the words that are in my mind but not inside my mouth. Looking right into my eyes, which is where we do most of our talking now. But my son is always here, standing by the window, watching carefully. She talks to him too of course, when there are things that she says we all need to discuss as a family. And then he always just nods quietly.

I wish my children knew that I feel blessed by having such a woman help me through these final days. I think I’d like a photograph of her on the wall too. I could just about fit her in. Or at least know that one day my son will thank her for all that she’s done. What she did.