Optimum models of hospice at home services for end-of-life care in England: a realist-informed mixed-methods evaluation

Hospice and palliative care services in England

The UK is world-leading in hospice and palliative care (H&PC) services, which care for people with life-limiting health conditions and those approaching the end of their lives. 1 These services are small or extremely small players operating in a complex system of health and social care that people approaching the end of life must use and navigate. Hospice services in the UK historically began in the charitable sector, and most of the funding for H&PC services continues to be derived from charitable sources. H&PC organisations are also in receipt of NHS funding (on average, the NHS contributes 32% of total funding to hospices in England2) and are subject to NHS commissioning processes. These factors, together with their small size, provide a range of challenges for H&PC organisations in terms of funding and sustainability.

Individual H&PC services have developed in localities as a result of voluntary activity led by key local people. There is a strong sense of ownership in communities of their ‘local hospice’, which continues to be vital for fundraising activities and generates a large supply of willing volunteers. The reputation of the hospice, both as a worthy, local charity and for excellence in care, is held very dear for all of these reasons . The public’s sense of identification with its local hospice tends to focus on the bricks and mortar building, and there is often less awareness or understanding of palliative care community services, including hospice at home (HAH) services.

National strategic direction

National strategy in England sets further context in terms of the drive towards encouraging choice about where people receive care and increasing the opportunities to be cared for and to die at home (moving away from the acute hospital sector). 3 This would seem to be in step with public preferences; evidence suggests that the majority of people would wish to die at home,4 and also indicates that the number of people expressing this wish is increasing. 5,6 Identifying how care can be delivered and maintained at home was a top research priority in a public consultation by the James Lind Alliance in 2015. 7 However, in 2019, only 24.4% of all deaths in England occurred at home (not including care home deaths)8 and it seems that, overall, health and social care services are not well equipped to meet this demand. 9

Another direction of national strategy that provides context for this study is that towards the integration of health and social care. H&PC services lend themselves naturally to this integration because holistic care, recognising the physical, psychological, social and spiritual aspects of people’s needs, has long been a basic precept of good palliative care. H&PC services routinely employ social care professionals, counsellors and spiritual care staff in addition to health-care professionals (HCPs).

Broader cultural and societal issues

Although H&PC services are prized and respected, as described previously, the reality of talking about and accepting death and dying in contemporary health care is more of a challenge. The public increasingly demands more and better acute, interventional health care into older and older age, staving off the inevitability of the ending of life. In this context, HCPs may lack the skills or confidence to open discussions about curtailing interventional medical care when it can no longer offer benefit and about planning for death and dying. H&PC services, which are so explicitly geared to death and dying, may therefore struggle to be accepted and to attract referrals of people who could benefit from their care. This issue may have even more impact in some cultural or faith communities or among those with diseases other than cancer, which are not as clearly identified with dying.

In addition to these influences, caring for and enabling people to die at home is affected by significant societal changes that have been under way over many decades. It can no longer be assumed that families will live nearby or have the resources to provide unpaid care. Home-based care of any description is heavily dependent on family/informal care, and those without such support have a more limited range of options.

Phase 1: national telephone survey

Hospice at home services serving adult palliative care patients in England were surveyed.

The survey aims were to (1) develop an understanding of the range of services and operations and (2) identify categories (types) of services from the survey information to use as a sampling framework for recruiting case study services in phase 2 of the study.

A total of 128 HAH services in England and the appropriate contact (e.g. service lead) were identified from the NAHH and Hospice UK directories of services and approached to take part in a telephone survey. Each service contact was posted an information letter, a survey and opt-out slip. An interview to collect the data over the telephone was proposed. Contacts were followed up 2 weeks later to arrange the interview if they had not already responded or opted out.

Telephone survey calls were conducted by a nurse with palliative care experience to facilitate understanding of the services. The survey was semistructured, comprising a selection of closed and open questions. Respondents were asked to provide details of the population characteristics in the catchment area; other relevant local services and access to palliative care beds; and HAH activity levels, staffing, facilities, equipment, processes, budget, and barriers to and facilitators of operating (see Report Supplementary Material 1 for the full questionnaire). HAH services were asked to provide supporting documents and to indicate willingness (or not) to consider becoming a case study site in phase 2.

Phase 2: case studies

Case study methods are a well-established approach to conducting research in ‘real-life’ health-care settings. 82 The approach employs mixed methods to gain an in-depth understanding of the impact of service models, resource implications and the experiences of all stakeholders, including service users, providers and commissioners. Yin83 describes case study design as orientated towards a realist perspective The design allows methodological flexibility to generate theoretical insights from the findings,84 which is a key requirement for realist evaluative design. 17 We adopted Yin’s83 approach to defining a case as an individual organisation. Although each case needed to be bounded, there was also some need to maintain flexibility, and each case was defined as what the site described as their HAH service.

Phase 3: stakeholder consensus

Two national consensus workshops, with up to 60 participants each, were held. To maximise potential attendance from stakeholders, one workshop was held in London and one in Leeds. Each event took place over 1 whole day at a conference venue, facilitated by the project research team, including PPI members. HAH services that had participated in the phase 1 survey were offered a £50 bursary to support attendance at a workshop. Additional invitees were identified through the NAHH, study co-applicants’ networks and the Project Steering Group. Other organisations also advertised the events: Clinical Research Networks, Applied Research Collaborations, Clinical Commissioning Groups (CCGs), Healthwatch and other national charities and groups (e.g. Marie Curie). Stakeholders included service providers, commissioners, researchers, members of the public and service users. The purposes of the workshops were to fine-tune the CMO configurations developed in phase 2 of the study and to provide a more nuanced understanding of the features of HAH models that work, for whom and under what circumstances.

Emerging findings and relationships between contexts, mechanisms and outcomes were presented to stakeholders using a mix of formats and approaches, including lecture-style, small-group work and poster presentations (see Report Supplementary Material 7). Consensus workshop methods were used99 to facilitate discussion. Consensus event delegates also contributed to planning the methods of communicating the study findings, in particular advising on the presentation of information relevant and accessible to the public, service providers and commissioners of HAH services. After the events, participants were sent a workshop report.

Phase 1

A descriptive analysis of survey responses was undertaken using Statistical Product and Service Solutions (SPSS) software, version 15 (SPSS Inc., Chicago, IL, USA), to gain an understanding of the range of HAH services. The analysis also sought to enable the identification of types of HAH service models for phase 2. Findings were presented in tables. Categorical variables [e.g. urban/rural setting, presence of hospice building(s), yes/no] were cross-tabulated with each other to identify underlying associations. Associations were explored between all variables. These results were used to identify any natural groupings of service features that could be defined as service models or types. Based on prior survey work from the NAHH21/Hospice UK (Heather Richardson and Andrew Thomson, personal communication), it was projected that approximately four high-level types of the model would be distinguished.

Qualitative field notes collected during the survey data collection were typed up and analysed inductively to identify relevant factors for the development of the typology. These were combined with the output from quantitative analysis and discussed at a meeting of the full team, resulting in agreement on a typology that could provide a framework for the recruitment of services as case studies for phase 2 (Figure 3).

FIGURE 3.

Service model typology. a, A 24-hour service provision is defined as two or all of the following: 24-hour hands-on care, 24-hour symptom assessment and management or fast response time (< 4 hours); b, provider size is based on having either more or fewer than 365 referrals per annum (one per day).

Based on survey responses, hospices that had indicated willingness to consider becoming a case study site were then approached to represent the identified service types as case study sites. We purposively sought diversity in geographical spread, socioeconomic profile, staffing mix and funding sources. Services were approached initially by e-mail; further queries and negotiation were managed by e-mail and telephone follow-up.

Phase 2

Facilitation of patient and public involvement in the project

All members of the research team worked with the public co-applicants, but a hospice research facilitator (CBr) had a dedicated role on the team to co-ordinate their involvement and provide support. The support was tailored to the individual needs of the public co-applicants, and included the following: partnership approaches to developing roles and expectations within the project; an introduction to understanding the research and governance approaches; and preparation and support for research meetings, for qualitative analysis in the case study phase and for facilitation in the consensus phase.

Charlotte Brigden also provided administration support relating to public co-applicant travel, accommodation, expenses and payments. The public co-applicants were paid for their time on the project and out-of-pocket expenses, in line with guidance from INVOLVE. 112 Honorary researcher contracts with the University of Kent were issued to them. For the ‘one-off’ PPI consultation via the Pilgrims Hospices with service users, carers and volunteers, a £10 voucher was provided as a token of thanks for their time and input, and travel expenses were offered.

Training for the public co-applicants was provided by the Centre for Health Services Studies, University of Kent, which had an existing PPI support programme. This included tailored training to support them with the analysis and interpretation of the qualitative interviews, including coding of these interviews. Additional training was provided on realist evaluation methodology and the concept of CMO configurations by experts on the research team at the beginning of the project and again during the analysis phase. A realist evaluation lay guide was produced for the public co-applicants as an additional support tool (see Appendix 6, including Table 28).

Phase 1: survey of hospice at home services

The public co-applicants were part of the research team, interpreting and discussing the findings from the survey at a consensus meeting. This enabled co-production by a process of joint decision-making, which included the following:

• The development of the model typologies.

• The selection of the shortlist of potential case study sites for phase 2 of the study. The public co-applicants encouraged and supported the inclusion of mixed populations in diverse areas (e.g. including services from the north and south of the country, rural and urban areas, and deprived and affluent areas).

Phase 2: in-depth case studies

Patient and public involvement activities included advising on public-facing study documents so that they were ready to submit for Health Research Authority governance and ethics approval, such as participant information sheets and data collection forms. They also provided insight into appropriate processes and procedures for approaching patients and carers.

As patients with capacity were invited to participate, feedback on a patient version of the participant information sheet was also sought from current hospice patients through day-care services, and local HAH service staff were also consulted. This input resulted in the following:

• Improvement of the language and content of the documents to make them more accessible and understandable to potential participants.

• Advice about when and how to follow up potential participants.

• The suggestion that a flyer should be designed to give out to potential participants in advance. The concept was to introduce the research to patients and carers prior to them accessing HAH services. Then, if they became eligible for inclusion, when it may be a more difficult and sensitive time to ask, they would already be aware of the research and more likely to be able to consider participating. The public co-applicants provided further feedback on the detailed content of the flyer when it was produced (see Report Supplementary Material 2).

A co-production approach evolved as the project progressed through each phase. Co-production takes PPI one step further to an approach in which researchers, practitioners and the public work together, sharing power and responsibility, including the generation of new knowledge. 113

One public co-applicant described this process:

At the outset, our role was far less hands-on, but as the project progressed, we wanted, and felt more confident, to be more actively involved. To facilitate this, specific training was arranged to make this possible. The team too had to be very accommodating to our frequent presence at meetings.

Examples of co-production in phase 2 between the researchers and public co-applicants included working on the following:

• The processes and procedures for data collection from carers using the questionnaire tools (i.e. the QODD and the AHCR).

• The recruitment procedures for the study, how and when to approach potential participants to complete the questionnaire tools.

• How to approach the follow-up of carer participants when researchers were having difficulties contacting them (e.g. three attempts was enough).

• Input on the decision-making on the timing of data collection after a loved one had died (e.g. 4 months seemed too long, 6 weeks about right, or sooner if it was the carer’s wish).

• Interpretation and discussion of the quantitative data from carers (i.e. the QODD and the AHCR).

• Development of the qualitative interview topic guide.

• Feedback on the qualitative interview coding framework.

• Iteratively analysing and discussing the interview data from service provider, commissioner and carer interviews (public co-applicants helped code carer interviews). This work was used to modify and develop the CMO configurations.

The public co-applicants in particular contributed to the interpretation of:

• the relationships between carers and HAH service and other care professionals

• the changing relationship between carer and patient as the illness progressed and needs were greater

• how the care was negotiated, how much the carer accepted taking on/carrying on versus wanting or seeking outside support

• models of service support available to the carer and patient, including volunteers

• the importance of, and threats to, continuity of the care offered

• the importance of what HAH services offered that was different (e.g. ‘time to care’, not ‘task orientated’, not just the length of time but the ‘pace’, ‘presence in the moment’), while still doing what was needed and filling the gaps in care.

In addition, in phase 2, the public co-applicants recommended that a newsletter be provided for all the participating project sites, ensuring that those services were kept informed of project progress.

Phase 3: consensus meetings

The final phase of work involved stakeholder consensus and feedback on the emerging results. Targeted advertising flyers for the events were designed for professional and public audiences and the public co-applicants advised on content, language and design/layout.

Each of the consensus event workshops focused on an emergent CMO, two of which were ‘support directed at the carer’ and ‘volunteers’. In preparation for these workshops, discussion groups were undertaken with a local group of volunteers and carers identified through Pilgrims Hospices. One public co-applicant (GS) helped to design and facilitate the groups, which took place on 25 November 2019. The groups covered topics on access to services and co-ordination of care, bereavement support and involvement of volunteers. When direct experience was lacking, Graham Silsbury was able to tease out some responses ‘in theory’ on what attendees thought would be good care in relation to the emergent themes of the CMO configurations. Knowing who to call and being responsive when needed, particularly OOH, were the main areas of concern for the carers.

The volunteers’ group generally saw that there could be a role for volunteers in HAH services, but more for befriending-type services, rather than personal care or even bereavement, which they felt should be the domain of the professionals. They felt that having structure and support as a volunteer, with reporting/communication mechanisms in the organisation, was preferable to being more autonomous in their volunteering roles.

Co-production continued in the consensus phase of the project. Examples of co-production in this phase of the project included the following:

• the most relevant discussion groups for the consensus events were planned and facilitated collaboratively between Charlotte Brigden, Graham Silsbury and Mary Goodwin

• the planning and organisation of the consensus events were agreed collaboratively between the researchers and the public co-applicants

• co-facilitation of some of the workshops/sessions at the consensus events (e.g. the ‘supporting carers’ workshop, the speed-dating poster session and the ‘so now you know’ session on ideas for project outputs and dissemination).

The feedback from the consensus events was synthesised by the research team, including the public co-applicants, which validated and provided further support for the CMO configurations.

Project outputs and dissemination

The public co-applicants were consulted during the writing of the lay summary for this report. For broader dissemination, the public co-applicants have helped with ideas to summarise and present the findings of the project in a way that is more easily accessible to service users and members of the public. Further advice on outputs for different audiences was gathered at the consensus events, with significant contributions from the public attendees.

Poster and oral presentations of the co-production work and the roles that the public co-applicants had on the project have been disseminated at regional and national conferences. The public co-applicants helped with the content and design of a poster114 and one public co-applicant co-presented with the research facilitator at a regional London/South East co-production conference, showcasing OPEL as an example of co-production in action in health research. 115 The public co-applicants have also been given opportunities to comment on other outputs from the project, for example a journal article, for which they have been included in the authorship. 22

Assessing impact

To provide feedback to our public co-applicants and assess the impact of PPI in the OPEL study, we used guidance produced in the East of England, led by the University of Hertfordshire. 116,117 An impact form was completed after every activity involving PPI. The information in the feedback forms was collated into flow charts, which were shared with the public co-applicants at the end of each project year (see Appendix 7).

The summary flow charts also acted as prompts for the public co-applicants to provide their own feedback at a dedicated session at the end of each project year. These sessions worked well when run at a time separate to the more formal project meetings at the university; for example, at the end of year 1 of the project, Charlotte Brigden and Claire Butler arranged to meet the public co-applicants in a local pub. This provided a more informal environment that enabled open discussion about how they had found the activities so far and how they would like to be involved in the future. At this meeting, we realised that they would like to be more aware of what was happening with the study day to day, not just those things specifically related to their PPI activities. As a result, they subsequently attended monthly project management meetings. It was also a good time to explain and discuss the case study phase of the research (phase 2) and establish what activities they would be happy to be involved in.

Feedback sessions were also organised so that the wider research team was included, for example a post-meeting afternoon tea at the end of year 2. At this meeting, it emerged that one public co-applicant was finding the coding of the interviews challenging, and we suggested alternative ways to contribute and provide interpretation of the interviews through summarised feedback. They also found that the coding felt quite isolating, as they wanted to be able to cross-check with others. Furthermore, they highlighted the contextual importance of listening to the interview alongside reading the transcript. A session was then arranged for the two public co-applicants to listen to some interviews.

Characteristics of hospice at home services

Responding HAH services reported varied numbers of referrals per annum [mean 452 (SD 393.7) referrals, minimum 62, maximum 2222]. Some services covered very large areas (across counties). They served total populations ranging from 5000 to 1.2 million (mean 323,488). On average, 2.5 referrals were received per 1000 of the total population (SD 2.5 referrals) annually.

Key characteristics of responding HAH services are shown in Table 2. Two-thirds of services relied on charitable funds or donations as their main sources of income, one-quarter of services were funded mainly by the NHS and three were fully funded by the NHS or their local authority. Many HAH services (n = 44, 62.9%) received NHS funding as a secondary source, but nine services (12.9%) received no NHS funding at all. When asked if having inadequate funding made it difficult to provide HAH services, 59 (84.3%) indicated that it made service provision somewhat or substantially difficult, whereas nine (12.9%) felt that inadequate funding did not affect service provision.

Services operated predominantly in mixed urban and rural settings and across areas with mixed deprivation levels; few services were operating in predominantly deprived areas. When asked whether or not the geography of the area made it difficult to provide services, most responders (97%) thought that this factor made service provision challenging. Most, but not all, services operated alongside 24-hour district nursing NHS services; just over one-quarter were operating alongside other HAH services in the same area.

Services had highly variable referral criteria with respect to the life expectancy of patients accepted for HAH care. Very few services provided care solely for the actively dying, defined as having hours or days to live; more than half of services accepted patients with a prognosis of up to or > 1 year. When asked if the referrals made to the service were manageable and appropriate, 97% of service managers responded that the referrals received were somewhat or substantially manageable and appropriate for their service.

Most HAH services reported providing personal, hands-on care for patients (such as washing and personal care), symptom assessment and management, psychosocial support and respite care for carers. Approximately half of HAH services were able to provide care 24/7. Fewer services provided practical support (household tasks, e.g. shopping) directly for family members or carers. Most HAH services were able to provide rapid response times (including at weekends) within 4 hours.

On average, services cared for patients for between 1 week and 2 months once referred. Service managers reported that intensity of care data were not routinely collected and were difficult to provide. Nearly half (n = 32), however, stated that they provided intensive care to patients (> 3 hours per day). Almost all services had local access to inpatient palliative care beds, if required, in a hospice, a hospital or a care home setting.

When asked about factors that made it difficult to provide HAH services, two main factors emerged. Delay in being able to administer anticipatory medicines by injection in a timely fashion was cited by 43 (61.4%) HAH services as somewhat or substantially difficult, and an inability to access necessary equipment and anticipatory medicines was problematic for 39 (55.7%). Almost all service managers felt that HAH services received substantial non-monetary support from local commissioners, the hospices themselves, community nurses and GPs (98.1%, 98.6%, 100.0% and 100.0%, respectively).

Staffing

On average, HAH services employed 19 members of staff, but the range was large (see Table 2). More than half (n = 37, 52.6%) of the services had at least three or more different disciplines among their staff. Nearly all services employed RNs and/or HCAs to provide day-to-day care (n = 66, 98.6%). Most services used more HCAs than RNs. Four HAH services were staffed with RNs only, and four with HCAs only. Many services (n = 45, 66.2%) did not employ additional staff solely dedicated to HAH services, instead drawing on clinicians and HCPs working across hospices and/or NHS services. Just over half of the HAH services reported no difficulty recruiting and retaining staff. Detailed staffing data proved difficult to collect and analyse, as many HAH services could not provide accurate data at the time of the survey. Therefore, findings on type of staff employed by HAH services and full-time equivalents should be interpreted with caution.

Views on enablers of hospice at home services

Parts of this section have been reproduced from Butler et al. 15 © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

The survey asked service managers about elements that supported provision or made it difficult to provide HAH services in their areas (Figure 4). Field notes recorded during survey interviews provided further insight into key contributing features for successful services. First, planning and integration of services locally was a major factor contributing to the provision of HAH services. Having a detailed business plan for commissioning and integration with other local end-of-life services enabled HAH service provision and funding. Furthermore, direct access to NHS trust services or other suppliers of medication and equipment, as well as suitably trained and prepared people to undertake medication administration, were key factors to patient care remaining within the home. The presence of an integrated patient record also allowed better integration and facilitated arrangement of anticipatory prescribing and advance care planning across providers.

FIGURE 4.

Enablers of and barriers to HAH services.

Workforce, staff skills and wider support also emerged as key to supporting HAH services that allowed patients to die at home. Service managers expressed the need to have a service able to respond to changes in demand, as patients could deteriorate at any time in the last hours/days/weeks of life, and their resulting service needs fluctuated accordingly. Using a skilled workforce mix of permanent and flexible staff (under zero-hour contracts) enabled services to adapt to demand. Many service managers also reported that identifying patients requiring rapid response or intensive support using trained triage staff and being able to communicate the support available to patients and families were key features of success. HAH services also benefited from a well-trained and extensive network of third-sector support, volunteers and a responsive family support system. 15

Recruitment of hospice at home services

Eight HAH services were originally included in phase 2 of the project. All eight were inducted into the study between November 2017 and February 2018. One service dropped out as a research site owing to workforce changes, having recruited three patient–carer dyads. As recruitment for the study fell behind the projected target, a further five HAH services were recruited to the study between October 2018 and February 2019. Two HAH sites were closed to the study in January 2019, having met recruitment targets, and the remaining nine continued to recruit until close of study recruitment on 30 June 2019. Although no patient–carer dyads were recruited to the study after 30 June 2019, data collection continued until 30 October 2019. In all, data were analysed for 12 HAH services, four in quadrant 1 (Q1) (larger, 24/7 services), four in Q2 (smaller, 24/7 services), one in Q3 (larger, not 24/7 services), three in Q4 (smaller, not 24/7 services).

The characteristics of the HAH services according to eligibility criteria for service models are shown in Appendix 8. The 24/7 availability of NHS district nursing services is also shown.

Among the five HAH services not meeting the criteria for providing 24/7 care (i.e. models in Q3 and Q4), one HAH service reported 24/7 symptom assessment and management and another reported ability to respond within 4 hours; two reported that DNs were available in the area 24/7.

Primary outcome: the Quality of Dying and Death questionnaire

A QODD was returned by the carers of 132 of the 284 patients (46.5%) who died during the study. Four respondents answered fewer than six of the 30 questions from which the total score is derived; they were excluded from the analysis. Response rates by service model and by individual HAH service are shown in Appendix 11. The proportion of carers who returned a QODD was significantly higher in model 1 than in the other service models. The frequency with which each of the 30 QODD questions were answered is shown in Appendix 12. The baseline sociodemographic and health status variables of the 152 carers who did not provide a QODD differed from those of the 132 who did only with respect to the education levels of the carer and the patient, which were higher among those responding than among those not responding (data not shown).

The total mean QODD score [range 0 (terrible) to 100 (almost perfect)] was 66.25 (SD 21.98, median 70.74, range 0–100, IQR 54.1–82.0) (n = 128). The distribution of the total QODD score (Figure 6) is not bell-shaped, with a slightly extended left-hand tail and a right-censored right-hand tail, the latter being caused by 100 being the maximum possible score. The distribution does not preclude the use of parametric techniques to analyse the total QODD score, but renders the median a slightly more appropriate summary statistic to describe the distribution alone. A score of 70 is associated with ‘a good death’. 100

FIGURE 6.

Histogram of total QODD score (with superimposed normal distribution).

Secondary outcomes

Service satisfaction and carer burden in the last 28 days of life

Completion of each AHCR included a question on satisfaction with services (scaled as follows: 1, exceeded expectations; 2, just met expectations; and 3, fell short of expectations) and a question on carer burden score (range 0 = best to 24 = worst). The last responses prior to the death of the patient (provided it was recorded within 28 days of death) were analysed (i.e. 143 service satisfaction ratings and 149 carer burden scores). The mean satisfaction and carer burden scores were 1.52 (SD 0.66) and 7.78 (SD 6.12), respectively. Histograms are shown in Figures 7 and 8.

FIGURE 7.

Histograms of service satisfaction (with superimposed normal curve). a, Responses for last 28 days of life, for which 1 = exceeded expectations, 2 = just met expectations and 3 = fell short of expectations.

FIGURE 8.

Histograms of carer burden (with superimposed normal curve). a, Responses for last 28 days of life; mean of six questions for which 0 = best and 24 = worst.

Comparison of outcomes by service model

Outcomes are summarised by service model in Table 10. Outcomes by individual HAH service are shown in Appendix 13. There was a statistically significant difference in the QODD scores between the four service models. Comparison of both mean scores and using the dichotomised scoring [≤ 70 (terrible, poor, intermediate) vs. > 70 (good, almost perfect)] reveals that carers in model 3 reported a significantly worse death than those in models 2 and 4 (Tables 11 and 12). Responses to each item of the QODD by individual HAH service are shown in Appendices 13 and 14 (including Tables 52–81). Significant differences were found between service models on service satisfaction (worst in model 1) and carer burden in last 28 days (least in model 1); model 2 scored marginally better than the other models on VOICES 1 and 2. There was no statistically significant difference between models in achievement of PPOD, although the proportion was higher in model 2.

Factors associated with the Quality of Dying and Death questionnaire score (primary outcome)

Bivariate tests were used to explore the association between the QODD scores (available for 128 dyads) and a range of potential influencing factors (listed in Appendix 15): patient and carer characteristics; place of death and achieving PPOD; length of time the patient was involved with the hospice; three items from the QODD reflecting the condition of the patient, communication with the carer during the last 7 days and how prepared the patient was for death; and the number of days between death and completion of the QODD (which could affect carer adjustment to life after the loss of a loved one).

Results revealed that higher total QODD scores (i.e. a better quality of dying and death) were associated with:

• the carer being educated to university level (n = 40; QODD mean score 74.42, SD 16.95), versus not (n = 74; QODD mean score 64.85, SD 20.72; unpaired t-test: p = 0.014; using highest level of education, Spearman’s rank-order correlation: r = 0.282; p = 0.002)

• the carer seeing the patient for more days during the last week of life (Spearman’s rank-order correlation: r = 0.194; p = 0.029)

• death taking place at home (n = 87; QODD mean score 68.74, SD 19.03), in a hospice (n = 27; QODD mean score 67.12, SD 26.02), in hospital (n = 11; QODD mean score 56.27, SD 20.12) or in a care/nursing home (n = 3; QODD mean score 22.93, SD 24.92); ANOVA: p = 0.001.

A lower total QODD score was associated with the patient being in the study for a longer time (days) (Pearson’s correlation r = –0.217; p = 0.014). No other statistically significant associations with the total QODD score were found.

Exploratory regression analysis to investigate the effect of service model on outcomes

Seven outcome variables were modelled using the variables listed in Appendix 16. Four of these outcomes were gathered from the post-bereavement interview [total QODD score, achieved a good death (i.e. QODD score of > 70), VOICES 1 and 2]; two were gathered from the last AHCR completed prior to death, provided it was within 28 days of death (service satisfaction in the last 28 days, carer burden in the last 28 days); and achieving PPOD was gathered from the baseline assessment at recruitment and HAH service records of death.

Associations between the total QODD score (primary outcome) and secondary outcomes indicated positive correlations with VOICES 1 and 2 and service satisfaction in the last 28 days, but not with carer burden in the last 28 days (Table 13). The total QODD scores were available for 77 (47.5%) of the 162 patients who achieved their PPOD and for 25 (41.7%) of the 60 who did not achieve their PPOD. There was no difference in the mean QODD scores between these groups: 70.1 (SD 18.5) in the PPOD achieved group versus 61.2 (SD 20.0) in the PPOD not achieved group; unpaired t-test: p = 0.162. Reducing the QODD score to its dichotomous form, a good/almost perfect death (score of > 70) was reported for 46 out of 77 (59.7%) who achieved their PPOD, compared with 11 out of 25 (44.4%) who did not (chi-squared test: p = 0.168).

Linear or logistic regression modelling was performed, with service model entered initially (model 3 was withheld as baseline) and additional predictors then determined by forward stepwise selection. Results in the form of fitted parameters for service model and for all other statistically significant predictors are summarised in Table 14, with interpretations provided in Box 1. Results of the logistic regressions are presented as adjusted odds ratios.

Modelling of the two QODD outcomes produced the most robust findings and the highest levels of explanatory power. Both revealed that improved quality of death was associated with small providers (models 2 and 4), dying at home or in a hospice and when the patient was aware for a longer time that they were dying. The QODD total score model also showed that carers who were female and carers who were educated to university level were more likely to report a good death.

Achieving PPOD was less likely when there was a longer time between recruitment to the study and death. This may be because the PPOD was recorded at recruitment and patients can change their minds. This would be consistent with the finding that patients in model 2 were both (on average) in the study for less time and more likely to achieve their PPOD.

Regarding views on help and support received, carers of service model 2 reported more help and support in the post-bereavement interview and that it was of better quality (VOICES 1 and 2). Service model 1 was associated with less satisfaction in the last 28 days. Lower quality of help and support (VOICES 2) and levels of satisfaction in the last 28 days were reported by carers whose patients died in hospital. The carers of female patients reported lower levels of support (VOICES 1) and university-educated carers provided better ratings (VOICES 2).

Carer burden was less in the last 28 days when the patient died at home, and in service model 1 [in which patients (on average) had longer associations with the hospice].

Differences between service models

The main summary measures of service use [in-home nursing/carer visits, total formal care contacts (including nurses, excluding inpatient care), informal caring hours] by model are shown in box plots in Figures 9–11. Box plots for individual HAH services are shown in Appendix 21, Figures 24–26.

FIGURE 9.

Service use by model: total community health and social care visits per day. This includes DNs/community nurses, and HAH staff and personal carers, and includes night sits. Boxes show IQR with median bar inside. Whiskers are minimum to maximum, after excluding all outliers. Outliers (small circles) are 1.5–3 IQRs from the end of the box; extreme outliers (asterisks) are > 3 IQRs from the end of the box. Q, quadrant. Patient identifiers are attached to outliers to enable identification of repeat outliers over time.

FIGURE 10.

Service use by model: total visits excluding inpatient stays and informal care. Boxes show IQR with median bar inside. Whiskers are minimum to maximum, after excluding all outliers. Outliers (small circles) are 1.5–3 IQRs from the end of the box; extreme outliers (asterisks) are > 3 IQRs from the end of the box. Q, quadrant. Patient identifiers are attached to outliers to enable identification of repeat outliers over time.

FIGURE 11.

Service use by model: informal caring. Boxes show IQR with median bar inside. Whiskers are minimum to maximum, after excluding all outliers. Outliers (small circles) are 1.5–3 IQRs from the end of the box; extreme outliers (asterisks) are > 3 IQRs from the end of the box. Q, quadrant. Patient identifiers are attached to outliers to enable identification of repeat outliers over time.

Inspection of the data showed differences in service use between model 1 (larger, 24/7 services) and the other models. In the last month of life (0–14, 15–28 days), larger proportions of dyads in model 1 reported no visits into the home at all; use of out-of-home care was, however, greater than in the other three models. A total of 12% of dyads in model 1 reported no in-home care, no out-of-home care and no telephone calls between 0 and 14 days (7% between 15–28 days). Furthermore, relatively high proportions in model 1 reported no informal care (32% between 0 and 14 days, 18% between 15 and 28 days). Between 29 and 92 days, there continued to be smaller proportions of dyads in model 1 reporting in-home service use and greater proportions reporting out-of-home care than in the other three models, but all dyads reported use of at least one in-home, out-of-home or telephone contact, and all respondents reported informal care. Greater proportions of dyads in model 1 reported overnight stays (hospital, hospice or care home) during days 0–14, but not in the other time periods (see Appendix 20). As comparisons across models were standardised for time from death, a plausible reason for these differences between model 1 and the other models could not be identified.

Provision of nursing and care by hospice at home services

The overall numbers of home visits per day of community nurses/DNs and HCAs, nurses and HCAs from a HAH service and personal carers from social services were highest in model 2 (smaller, 24/7 services) and lowest in model 1 (larger, 24/7 services). There was no difference between the models with respect to the proportion of all nursing and personal caring visits that were made by community nurses/DNs in any of the three time periods (between 30% and 35% of all visits), but differences did exist between models in the proportions of HAH nurses or HCAs and social service personal carer visits. Pairwise comparisons of models showed that greater proportions of visits were from HAH staff in models 2 (smaller, 24/7 services) and 4 (smaller, not 24/7 services) than from HAH staff in models 1 (larger, 24/7 services) and 3 (larger, not 24/7 services); the proportion of visits from social service carers was greater in model 3 (larger, not 24/7 services) than in the other three models (Tables 16 and 17) (see also Appendix 22, Figures 27–29).

Characteristics of participants

Differences existed between service models in the characteristics of patients recruited, with implications for the extent of data collection and interpretation of outcomes. Patients in model 1 (larger, 24/7 services) were in the study for longer (recruited further from death) than those in the other three models and had significantly better Australian modified Karnofsky Performance Status (functional status) scores at recruitment. There were similar differences in Phase of Illness scores at recruitment. The carers in models 1 and 4 were older than those in models 2 and 3.

There were also differences in patient characteristics between HAH services within service models that further impeded the interpretation of findings. In addition, some HAH services recruited small numbers, such that model outcomes reflected the outcomes from one larger service.

Primary outcome

The post-bereavement QODD was completed by 128 carers (response rate of 46.5%). Greater proportions of bereaved carers provided QODD responses in model 1; a higher education level was also associated with completion of the QODD. Across all models, the median QODD score (achieved by 52.3% of respondents) was 70.7, equivalent to a ‘good death’ [QODD scores range from 0 (worst) to 100, with > 70 being deemed ‘a good death’]. Higher QODD scores were elicited from female carers, from university-educated carers, when patients had known for a longer time that they were dying and when patients had died at home or in a hospice. When all items were adjusted for, models 2 and 4 (smaller providers, 24/7 and not 24/7 services, respectively) delivered significantly higher (around 12) QODD scores.

Preferred place of death

Of 222 patients who had expressed a PPOD (at recruitment) and for whom the actual place of death was known, 162 (73.0%) died in their preferred location [168 (75.7%) if care/nursing home deaths are counted as ‘home’]. There was no statistically significant difference between the four service models in achieving PPOD. Overall, 152 (68.5%) participants died at home [160 (71.5%) if deaths in care/nursing homes are included as home deaths]. Being in the study for a longer period of time was associated with a lower likelihood of achieving PPOD, possibly reflecting that preferences were gathered at recruitment and may change closer to death.

Satisfaction with care

Views on satisfaction with care were gathered from carers post bereavement, at the same time as completion of the QODD. Responses to VOICES 1 showed that most (76.4%) respondents thought that they had got as much help and support as they needed in the period before the patient died. The carers of female patients reported lower levels of support than the carers of male patients; carers in model 2 (smaller, 24/7 services) were eight times more likely to report getting all the help and support they needed than carers in the other three models. Most carers (75.8%) rated the help and support they received as excellent or outstanding (VOICES 2). Better ratings were associated with university-educated carers; the patient dying in hospital was associated with worse ratings. There was a trend for carers in model 2 to report better quality of support.

Service use

Rates of formal and informal care tended to increase closer to death, but there was considerable individual-level variation. During the last 2 weeks of life, carers reported medians per day of > 20 hours of informal caring, 1.76 in-home nursing and personal care visits and 2.36 total contacts (health, social and voluntary sectors, including nursing but excluding inpatient stays). Use of inpatient beds (hospital, hospice and care/nursing home) was low.

Role of hospice at home

Local NHS community services, HAH services and social services worked together to provide in-home nursing and care, and this was the most frequently reported item of formal service used. The highest daily average number of visits was reported in model 2 (smaller, 24/7 services) and the lowest in model 1 (larger, 24/7 services). There was no difference between the four models in the proportion of in-home nursing and care provided by local NHS community services (between 30% and 35% of all visits), but HAH and social services support appeared substitutable, with HAH input being greater in models 2 and 4 (smaller services).

Costs

Daily formal and informal care costs increased closer to death. Median daily total formal care costs were £104.57 in the last 2 weeks of life and £56.07 prior to the last month, of which in-home nursing and personal care daily costs were £40.43 and £12.22 in the last 2 weeks and prior to the last month, respectively. In line with reported service use, costs per day were consistently lower in model 1 (for formal and informal care) than in the other three models. Daily in-home nursing and care costs were higher in model 2 (smaller, 24/7 services) than in model 4 (smaller, not 24/7 services); the daily costs of all formal care were higher in model 3 (larger, not 24/7 services) than in model 4 (smaller, not 24/7 services). Informal care costs (which were valued by replacement cost methods) were higher than formal care costs in all models: the median daily costs (using replacement value) were £580.00 in the last 2 weeks of life and £348.00 beyond the last month.

Sustainability

Hospice at home services exist in an environment in which there are constantly changing funding arrangements and commissioners, and an increasing requirement for data to provide evidence to support commissioning. There are also local and national shortages of health and social care staff, alongside a national drive towards care at home. For sustainable, longer-term funding within this context, a HAH service needs to proactively seek control over available statutory funding; engage with the wider health and social care environment; and, if a charitable organisation, undertake fundraising and income generation from a range of sources. To recruit and retain staff to deliver the care that patients need, a HAH service requires a reputation for excellence and for investing in staff development, and will need to alter skill-mix profiles in response to local workforce shortages.

Volunteers

Workforce shortages and the willingness of many people in the local community to volunteer makes the volunteer workforce attractive to H&PC organisations. Changing societal norms around family and community structures have affected the social networks of many patients and carers, with demand on carers compounded by HAH services’ limitations in providing longer periods of input. Although a volunteer workforce could result in extending this period of care, HAH services need to effectively recruit, train and manage volunteers, including providing clear responsibilities, support and lines of reporting. However, to reduce the bureaucratic burden, the HAH service may take a different approach to some aspects of volunteering, along the lines of the Compassionate Communities model120 in which volunteers act as good neighbours.

Integration and co-ordination

Services across the whole system commonly act in silos, resulting in both duplication and gaps in services received by patients. This is compounded by a limit to services, funding and workforce. In addition, issues of professional ownership of EOLC are at play, and organisations seek their own branding and distinctiveness for sustainability purposes. Patients in the last phase of life often have unpredictable needs, at times that are difficult to anticipate. Some patients and carers will not know when to ask for help or who to contact. The HAH service needs to work in a co-ordinated and effective way with other service providers. This may be through a blended service without hard boundaries around roles or services, a secondment to a different setting that facilitates integration, or an agreed division of labour between services. If patients and carers are provided and updated with information, including who and how to contact professionals, then the chances of them receiving a seamless service and continuity of care with consistent information increase.

Marketing and referral

There is a complex system of health and social care providing EOLC for patients in the community. Furthermore, hospice services are often thought of as a building, and there is less understanding of HAH services. HAH functions in a society in which there is a fear and stigma around death and dying (particularly in some communities), with potential referrers reluctant to have conversations with the patient regarding prognosis. To increase referrals in general, and in particular of those who are poorly represented in hospice services, HAH needs to actively market its service to professionals and the public through clinical and public engagement. Referral systems need to be as simple as possible and not require complex transfers of information.

Knowledge, skills and ethos of care providers

Although all health and social care workers should have basic knowledge and skills in EOLC, sometimes these are lacking, including a lack of confidence in communicating at the end of life. For some patients, basic skills may not be adequate to meet their difficult or complex needs. Palliative care and EOLC have developed into specialty area of knowledge, skills and ethos, and this distinctiveness is prized by HAH organisations. However, much of this expertise still resides in cancer care, meaning that patients with other illnesses, such as dementia, may present challenges to staff and organisations. Some services (HAH and non-HAH) may also lack the time to offer personalised and patient-led care, and commissioners may prioritise equity of access across the population, rather than time and expertise. To add value to the whole system of care, HAH services need to provide expert knowledge and skills in EOLC with a suitable ethos to support this care. This is enabled by experienced staff who have spent a significant proportion of their time in EOLC so that patients and families trust them. Staff at all levels, including volunteers, are suitably trained, including appropriate communication skills, so that they can create an environment in which patients and carers have confidence and feel that they are in expert hands. HAH services value the time to offer personalised patient-led care, leading to better patient and carer experiences and sense of agency.

Support directed at the carer or patient–carer dyad at home

Unpaid care provided by family and friends is critical to enable patients to remain at home. How the patient and their informal carer, as a unit in the home, feel about dying at home and respond to the challenge of this situation will be key to achieving death at home. The carer may require confidence and new skills to enable them to provide care up to and including the point of death at home. In bereavement, there may be short- or long-term consequences of caring on the carer’s mental and physical health. However, there is a concern about medicalising bereavement, which is a normal process.

A full assessment of care needs including the whole family/care unit is required. The HAH service fully informs the carer about what might happen in terms of the trajectory of illness and the increasing burden of caring over time. Carers will then know what to expect and can rapidly recognise a change in caring situation from control to crisis. If carer and patient choices are affirmed and supported whenever possible, the carer and patient have an increased sense of control. The HAH service should negotiate a partnership with the carer, including clarity about what can and cannot be provided, and recognition of what the patient–carer dyad wants. Pre-and post-bereavement support is based on relationship and understanding of the situation, and a shared story of caring for the patient. In addition, those not experiencing normal bereavement need to be recognised and additional help made available. This should not rely on self-referral and the timing may be many months post bereavement.

The relationship between these six programme theories is illustrated in Figure 15.

FIGURE 15.

Relationship between programme theories.

An analysis of the data supporting each CMO configuration will now be presented. Data will be presented from interviews, and feedback from the consensus workshops.

Sustainability

The CMO for this configuration is shown in Box 2.

Volunteers

The CMO for this configuration is shown in Box 3.

Although many carers had friends and family to support them, we found evidence of increased carer burden when little social network support was available. Some carers would have greatly valued more support from someone to provide longer breaks:

. . . the length of time that they said they [HAH paid staff] could do it for was not helpful at all . . . there’s not a lot you can do in 2 hours . . . if I’d had to catch the bus, I would have literally have had enough time to run into the chemist, get the prescription and come home.

WC48

However, because HAH services were predominantly focused on the patient rather than the carer, the rapidly escalating health-care needs of the patient and the requirement for skilled hands-on care to meet these needs, many HAH services did not see a potential role for volunteers to support the patient in their own home. One volunteer organiser was aghast at a potential volunteer role in providing physical care:

. . . I was a bit, um, instantly gut reaction adverse to that idea that they would have health-care assistant roles as well . . . it would be ‘oh somebody might need to be fed or got up in the morning’ and that’s not what the volunteers want to do . . .

XSP02 (volunteer manager)

For volunteers, the length of time to develop a relationship with a patient and family was important, which was unlikely to be available in some of the HAH services when contact was only in the last few weeks of life:

. . . the longer that relationship goes on, then the more that person relies on you . . . it would seem that the patient gets a great deal of benefit out of my visiting.

WSP06 (volunteer)

Nevertheless, although some carer interviews suggested that it was more befriending or ‘errand-running’ that would have helped, one of the case study sites did have volunteers providing hands-on physical care. This site ran an adult care certificate programme for volunteers. Training included personal care and symptoms to look out for, and initial experience was gained in the inpatient unit. A volunteer interviewee described how they were asked to consider providing respite care in a patient’s own home. With no previous experience in health or social care, the volunteer describes how they:

. . . have been trained on how to, if they’ve had a bowel accident or something, I know what I need to do. I’ve also been trained on suction because a couple of patients can’t swallow, can’t do anything, so they’re at risk of choking, so I’ve been trained on how to clear the throat.

ESP05 (volunteer)

The volunteer provided 2 hours of respite care every other week. They described their role as taking a referral with minimal information; preparing for the visit, which included trying to glean knowledge about the patient’s interests; and doing basic care, if necessary. The volunteer was also able to double up with a HCA for HAH visits. The volunteer described their remit as being a friend to the patient and carer, giving the carer a break and freeing up skilled staff.

When interviewing the commissioner for this case study site, they felt that the volunteers were an essential part of the service as it made ‘the money stretch’. However, as the service was contracted by the CCG, they needed to be sure that volunteers were adequately trained and appraised, which led to a cost for the service. Added to this were concerns from the site on the challenges of managing a workforce that was not in an official contract with the organisation:

. . . you are beholden to volunteers that have, you know, they’re not contracted to us, they can go on holiday whenever they please and they can go away for 6 months if they want to . . .

ESP06 (head of well-being)

However, this hands-on volunteering role was often a very positive experience for volunteers and had led some to a career change, as described by a HCA who, from an unrelated work background, had started volunteering in the hospice after experiencing hospice care for a relative, completed the care certificate and eventually became a full-time HCA.

Volunteers who had previously been health or social care professionals were particularly valued. Examples of this role included advance care planning with patients, and being used in bereavement support services:

Fifty-odd volunteers offering bereavement support . . . we have quite a few that have been nurses in the past and things like that . . . you are obviously retired from that role but then come back as volunteers.

VSP03 (chief executive)

Although volunteers were used extensively in bereavement services, we found little evidence that carers found this particularly helpful. What they desired most was to keep some contact with HAH care staff with whom they had developed a close relationship during difficult times (discussed further later in this chapter).

One case study site was notable for the range of community-based volunteer roles provided; these included:

• hospice neighbours – social support provided early on during the palliative phase

• carer companion – provided later on during EOLC, with the relationship extending up to 3 months post bereavement

• bereavement support volunteers – 10-day training provided; volunteers –

  • delivered one-to-one bereavement support for up to 6 weeks; each volunteer has a maximum caseload of three bereaved carers

  • facilitated monthly support groups

  • participated in ‘walk and talk’

  • attended early bereavement cafes.

• discharge buddies – supporting patients discharged from the inpatient hospice

• CCG/hospice hub volunteer – particular remit to draw up advance care plans with patients not in the EOLC phase

• compassionate neighbours – facilitating a more natural friendship than the more purposeful hospice neighbours:

. . . compassionate neighbours . . . the expectation is that you visit someone for about an hour a week, that you would spend time with them that way. But the idea of a compassionate neighbour . . . it’s like generating genuine friendships and connections . . .

PSP05 (volunteer manager)

At this site, volunteering was perceived as innovative, was embedded within policies and was facilitated by a volunteer manager. However, there were challenges. In addition to the resource implications of managing and training the volunteer workforce, one of the biggest issues was ensuring that volunteers kept within boundaries:

. . . I think sometimes people feel for themselves as a volunteer that it’s different to a member of staff, which of course it is, but it doesn’t mean that boundaries are different. But I think people think ‘well it’s OK for me to because I’m a volunteer’, well it’s not actually . . . you’re a representative of an organisation.

PSP05 (volunteer manager)

The potential benefits and challenges of volunteers were also expressed by sites considering developing their volunteer workforce. One respondent from a site felt that:

. . . there’s an untapped resource we could use there and so many of our volunteers have the skills that could be developed into the clinical development . . . clinical volunteer role . . . so it is something we would like to develop.

VSP03 (chief executive)

In contrast, another respondent from the same site expressed:

. . . there’s a risk to our reputation that if we put volunteers in doing respite in someone’s house and that patient became soiled, that actually that volunteer can’t deal with that, and then that we’re kind of leaving a patient suffering . . . the boundaries would need to be very, very clear before we introduced volunteers.

VSP04 (director of operations)

This tension between recognising a potential volunteer role in the last days of life and seeing any benefit of this role outweighed by potential risks was amplified in the consensus workshops. Although there was acknowledgement that the volunteer workforce has ‘huge potential’, the risks to the reputation of the employing organisation were frequently mentioned. Concerns centred on governance and health and safety, and maintaining the fine balance in ensuring that boundaries are clear and adhered to, versus allowing natural responses of compassion and empathy that underpin much of the motivation to volunteer. These issues were prevalent in the case studies, illustrated by this caveat on using volunteers to assist physiotherapists:

We’ve already assessed the person at home and they say ‘I would like a Zimmer frame’ [Zimmer Biomet Holdings, Inc., Warsaw, IN, USA], so then the volunteer would go out and give them a Zimmer frame and just check that they’re all right with the height, etc. . . . we’re looking into that, but obviously we’ve got to look at the insurance side of it.

GSP02 (physiotherapist)

Commissioners appeared aware of the potential benefit of volunteers, but cognisant of less formalised approaches to quality monitoring:

. . . we would expect to see certain training needs met, appraisals being done, that sort of thing and that’s not always the case with volunteers, so I think our safety and quality team are working with them to try and come up, like, with a meet-halfway-type scenario. . .

EComm01

This ambiguity and tension within the volunteer role will be explored further in Chapter 8, but realising the potential of a volunteer workforce could, quite clearly, contribute to the sustainability of the HAH services. As shown in Figure 15, it also straddles the next group of CMO configurations, ‘doing the work’, and has the potential to positively affect carer burden.

Integration and co-ordination

The CMO for this configuration is shown in Box 4.

Marketing and referral

The CMO for this configuration is shown in Box 5.

Knowledge, skills and ethos

The CMO for this configuration is shown in Box 6.

Support directed at carers or the patient–carer dyad at home

The CMO for this configuration is shown in Box 7.

The impact of all the HAH services (with their various approaches to sustainability; volunteering; integration and co-ordination; marketing and referral; and knowledge, skills and ethos) was ultimately felt in the patient’s home, and this CMO configuration draws together many of the themes from all of the CMO configurations.

Time and expertise

Most striking across all sites was the emphasis on ‘having time to care’, which permeated all aspects of ‘doing the work’, and was strongly embedded in the HAH ethos and was inextricably linked with expertise.

An important example of the interplay between mixed-methods data strengthened the evidence for this theme. The quantitative data found that smaller HAH providers were associated with higher scores for the QODD. Qualitative interview data, revisited when this finding emerged, found that an advantage of smaller providers (models 2 and 4) was that they were particularly agile, providing a rapid response and hands-on care 7 days per week, which appeared to facilitate a trusting relationship with the patient and carer. Furthermore, the service use data showed that patients in model 2 (smaller, 24/7 services) received, on average, more in-home nursing and personal caring visits than those in the other models; in-home visits were fewest in model 1 (larger, 24/7 services). However, some carers commented that it would have been helpful to have received support sooner, with smaller providers tending to provide support only in the last few (or even just 2) weeks of life. Informal carers from a service in model 1 were more likely to report no in-home visits in the last month of life than carers in other models. The reasons for this were unclear, although the qualitative data hint that carers had to proactively approach services in model 1 (which provided less frequent and more hands-off contact over a longer period of time), and this may have acted as a deterrent to accessing services.

We may tentatively assume that the greater intensity of HAH staff visits in the smaller providers might be linked with the more positive QODD scores. The qualitative data suggested that QODD scores were linked to the temporal concept of time, which also incorporated the perception of having time and working at a pace suited to individual need, providing a compassionate experience that helped ease the burden of care (and indirectly boosted the HAH service’s reputation). Carers shared this perception and appreciated that staff also knew when to leave, so that their presence was not overly intrusive, especially in the very end stages, reflecting a need to have time alone with the patient and ‘manage boundaries of home and private space as the dying person’s needs escalated’. 123 This flexibility attracted staff to the service (compared with what was regarded as more task-orientated community nursing), appeared to contribute to retention and was highly valued by families (compared with time-limited and less skilled agency carers). Other literature has explored the provision of EOLC by non-specialist RNs and found a significant gap between patients’ needs and nurses’ capacity, particularly insufficient time to provide comfort to patients/carers and to reflect on the care process. 124 This was largely due to workload and increasing care complexity,125 alongside a lack of knowledge, experience and organisation support. 124

Wye et al. 37 noted the importance of ‘highly skilled’ palliative professionals with ‘dedicated and sufficient time’. We also found that it was the HAH team’s skills and professionalism that differentiated them from other services; this included all staff, not just those professionally trained. This finding held for model 2 services which were HCA-led, albeit by highly skilled HCAs and not agency staff, but other studies have not differentiated. Expertise was strongly associated with trust, in that carers expected any input under the umbrella of the HAH service (or their specific brand) to be of high quality, and when that expectation was not met, satisfaction plummeted. Carvajal et al. ’s124 literature review identified the importance of developing a relationship based on trust, presence and availability, but also on involving reciprocity and shared ‘values, beliefs and expectations’ between nurses, patients and families. In our context, this suggests that if carers trusted HAH staff, who responded rapidly when required, carers were more likely to expect that the service could meet their needs. This was largely true, but there were examples when a HAH service could not provide the perceived or actual intensity of care required, and this may account for carers feeling let down when the anticipated rapid response was lacking, with unmet expectations expressed by a small number of carers who stated that the HAH service could not meet patient needs at home and a hospice bed was unavailable, resulting in a hospital death and significant distress.

Resonating with our findings, Jack et al. 126 explored patient/carer experiences of HAH provided by ‘hospice nurses’ who comprised RNs and HCAs, but the findings did not differentiate. However, hospice nurses were perceived as having a level of training and expertise that resulted in ‘the provision of a fundamentally different service to that provided by other health professionals and staff from care agencies’. Patients and carers trusted nurses because they took time to develop a close relationship and were skilled communicators, enabling sensitive discussions around the end of life. Their expertise meant that carers felt reassured and able to take time out from caring,126 in contrast to generic HCAs who were unable to carry out routine tasks, which then became the carer’s responsibility, thereby increasing carer burden. 127

Some of our service providers were focused on sharing their expertise with colleagues, such as district (or community) nurses, which seems appropriate, given that they are ‘generalists’ with limited time so would benefit from the support of palliative specialists. 37 However, this highlights a tension between community nursing, with limited capacity and expertise but providing the majority of EOLC in the community, and time-rich, highly skilled HAH services that only treated a fraction of those requiring input, an inequity our commissioners noted.

The patient–carer dyad

Hospice at home services were skilled at building a valued partnership that acknowledged the needs of, and cared for, both the patient and the carer. Many carers noted that HAH staff were adept at moulding their input to what was needed, spanning personal care, listening, support and even ‘becoming part of the family’. Nearly all HAH services considered carers’ needs, and our evidence suggests that this should be integral to service provision. In services positively evaluated by carers, HAH was moulded around the dyad, supporting both the patient and the carer, and meeting different needs at different times with ‘dedicated and sufficient time to engage in difficult conversations’. 37 Regarding patient and carer as a unit stems from the concept that dyadic coping is a reciprocal process whereby each partner supports the other to manage problems jointly. 128 The importance of treating interdependent couples as a dyad has been identified in other condition-specific literature, including dementia,129 long-term conditions130 and traumatic brain injury,131 with common themes relating to loss of valued roles and autonomy for the patient, and carer burden, affecting quality of life for both.

Holdsworth et al. ’s12 study of bereaved carers who had received HAH found that care providers, especially nurses and HCAs who visited frequently, became part of the patient–carer social network. Holdsworth et al. 12 did not differentiate nurses from HCAs, but commented that ‘some degree of informality’ was appreciated, as carers became familiar with the same faces, as opposed to doctor’s less frequent and more task-orientated visits. However, building informal relationships is not acknowledged in frameworks for professional practice, presumably because professionals have a duty to ‘stay objective and have clear professional boundaries at all times’. 132 Our carer interviews indicated that HAH staff successfully negotiated the balance between moulding into the family’s world versus remaining ‘professional’, but that this tension was less well managed with the sudden cut-off post bereavement.

In qualitative data, our carers identified night-time cover as highly important, as found elsewhere. 54,127 Even if carers did not use it, they needed to know it was available and had concerns around service limitations, especially on weekends and bank holidays, which could be detrimental to the continuity of care. 54 From the quantitative data, there appeared to be a weak association (p = 0.042) between having one or more night visits in the last 7 days (from HAH or district/community nurses) and a better QODD score; however, this must be interpreted with caution and does not specify that night care needs to be provided by a HAH service.

For patients with cancer, there was a statistically significant positive association (Spearman’s rank-order correlation test: n = 95; p = 0.020) between the length of time the patient had known they were dying and the total QODD score, with significantly better QODD scores (Spearman’s rank-order correlation test: n = 21; p = 0.493) for those who were aware for a longer period before death that they were dying. This suggests that having time to prepare enabled couples to adjust, plan and achieve the experience that they wanted, although we were unable to ascertain why this association was not significant for non-cancer patients (p = 0.493). Murray et al. 133 suggested that the illness trajectory for patients with cancer is more predictable than that for patients with long-term conditions. Consequently, palliative services are better matched to the needs of those with cancer, who may regard planning for the end of life as a way of feeling more in control of their situation. This compares with long-term conditions in which the illness trajectory is longer and more unpredictable; Murray et al. 133 suggest that these patients/carers may be reluctant to acknowledge or plan for the end of life, and that clinicians may collude. Holtslander et al. ’s134 meta-summary of the experiences of bereaved carers identified six studies in which ‘saying goodbye’ was identified as a positive factor pre bereavement, but this does not necessarily equate with the length of time pre death nor the extent to which it is influenced by uncertainty, changes in role and relationships. 135

Carer needs were routinely addressed at the micro level, but less consistently at the meso level, for example formal (re)assessment of need. However, larger, 24/7 services (model 1) tended to run a more extensive programme of peer groups and training courses specifically to support carers, which the qualitative data suggest were valued by carers. Although more expensive support partially related to differences in the length of involvement across sites, carer (re)assessment is enshrined in policy136 and tools exist to assess carer burden. For example, the Carer Support Needs Assessment Tool aims to facilitate carer-led assessment and support, specifically identifying potential areas of unmet need and co-producing an action plan. 137

Carers also required consideration at the strategic (macro) level to address needs across the whole system of care, given how reliant it is on the input of informal carers. Carer lobby groups have long argued for formal recognition, including payment, but this was not something our carers suggested, simply that they needed the right support at the right time to successfully assume the ‘mantle of care’, with all that is involved. 123 Wye et al. ,37 commenting on the policy drive for dying at home, noted that the burden of care falls on family members who may have little or no relevant previous experience, and ‘lack of knowledge, skills and support among informal carers’ can be a key barrier to dying at home. 127

Most HAH services signposted patients/carers to relevant services, and detailed informal knowledge of local services can be very helpful. 37 Many of our HAH service providers also fulfilled the role of service co-ordination, but some carers had to bring services together themselves. However, with growing fragmentation of services across health and social care (despite the rhetoric of integrated care), families will ‘have ever greater need of experienced, committed, proactive staff’ who can provide an overview across all sectors to help carers navigate the system. 37

Post-bereavement support

Our qualitative data suggested that carers were least satisfied with bereavement support, commenting on the shock of the HAH team rapidly retreating from being part of the family. Carers understood that the HAH service had to redirect its efforts to others, but this lack of continuity was a common refrain and carers reported significant gaps. Carers wanted to connect with someone, even just briefly, who had been part of the caring process, knew the patient and understood the context. Some HAH services offered universal and generic follow-up to all carers, in the format of, for example, a postal leaflet. Others tried to selectively contact those perceived as likely to need help, based on clinical experience or an assessment, but carer interviews indicated that both approaches had shortcomings.

Post-bereavement activities included formal group or individual counselling and informal activities such as carers’ cuppa, men’s cooking classes and walking groups. For those carers who had investigated available support post bereavement, the format (particularly for those with children/teenagers) and timing of follow-up was not ideal, with only one site meeting carer expectations, although many carers found it difficult to articulate what would have been helpful. However, carers were clear that it related to talking to someone who they regarded as familiar and who knew the patient, and with whom they had a combined background or narrative. This suggests that it was the joint link to the patient that was important, just as its loss was felt strongly when HAH staff withdrew.

As stated, most sites provided counselling and group activities, but evaluation of implementation and outcomes in this setting is limited. 26 In addition, the current (COVID-19) funding crisis is likely to lead to a reduction in the availability of bereavement services. 138 The lack of suitable, or any, follow-up is a common finding in the literature, alongside the importance of providing support that meets individual need, given that everyone’s experience is unique. 134 Although primary care is recognised as a suitable avenue for providing (standard) bereavement support, we found few examples of this. Most GPs have had little training in this area and are not sufficiently familiar with families to make contact in bereavement. 139

The need for standard bereavement follow-up and complex grief follow-up is recognised26,28 but what this should comprise is not well defined. Hudson et al. 140 commented on the ‘dearth of contemporary practice standards that explicitly articulate what resources palliative care services should allocate, when they should allocate them, how, and by whom’. Most literature differentiates between normal grief, whereby intensity subsides over time, and a prolonged grief disorder141 or complicated grief. 142 Some of our case study sites tried to identify those at risk of complex grief reactions, but rarely systematically or supported at the meso level, instead depending on individual clinical decision-making.

The ambitions for palliative and EOLC framework143 endorses bereavement care tailored to individual context, but lacks guidance on how to achieve this. Luckett et al. ’s26 review of models for palliative care found that only Ireland specifically recommended that bereavement support ‘should begin early in the disease process, long before the death of the patient’. 144 The report suggested that palliative services should be able to anticipate severe grief reactions and prepare the family for impending bereavement. 144

Axelsson et al. 145 also acknowledged that pre-and post-death grief are part of the same process, again questioning our sites’ separation of pre- and post-death support when the experiences of caring, grieving and ‘facing life without that person are connected chapters’. 134 This suggests that screening and assessing for emotional distress and risk of complicated grief should be ‘a continuous process’ from referral to many months post bereavement. 146

Follow-up varied among our case study sites, but mostly involved a telephone call at a set interval, for example 6 weeks post bereavement. Aoun et al. ’s147 survey of carers found mixed patterns of follow-up, and although over two-thirds of carers reported that they had received enough support, the dominant view was that support for themselves, as carers, pre and post bereavement was either lacking or too generic. 147 It was recommended that services consider when to contact carers post death, who should do so and how to make the contact focused on the specific needs of the carer. 147

The medical–social continuum of end-of-life care

Figure 16 demonstrates how HAH services were rarely at the extremes of either paradigm, but aligned themselves more closely to one or the other, differentiated by staffing configurations and interventions. Each HAH service has been placed along the continuum, based on phase 2 data. More medically aligned services had a higher proportion of qualified nurses, including CNSs (either alongside or as part of a single point of access to community palliative care), carrying out medical tasks, for example managing syringe drivers. Conversely, social model services provided significantly more hands-on care than ‘medical’ ones and had a higher proportion of (or only) HCAs, but were reliant on district nursing for medical/pain management. However, even services predominantly providing hands-on care did so with a level of expertise that carers consistently rated as higher than that of social services agency staff, linking it also with having time to care and a flexible service.

FIGURE 16.

Hospice at home services bridging the medical–social continuum of palliative care.

Our typology of HAH services shares components of Firth et al. ’s28 criteria for palliative care, including type of care (e.g. hands on vs. advisory); size (number of referrals annually); OOH care (five criteria); number of disciplines delivering care; and mode of delivery, bereavement follow-up, funding and discharge criteria. However, 20 components do not constitute a model and their different constellations across services reflect the wide variety in hospice (and HAH) provision.

Bainbridge et al. ’s24 review of systematic reviews focused on positive outcomes and identified multiple components of HAH care that were divided into five categories: type of services offered, availability, characteristics of care model, linkages to other resources and process interventions. Most programmes had components from multiple categories and the most common components were associated with positive effects on multiple outcomes. First, linkages across services and settings (formal and informal, as we also found) helped decrease the barriers that silo working creates, increased interagency accountability and information transfer, and facilitated seamless transitions across settings. Bainbridge et al. 24 did not mention a single point of access, but we found that this, combined with an effective triaging system, helped direct patients/carers to the right service(s) with the right information, but did not entirely avoid silo working. Second, care that was multidisciplinary and holistic was more capable of meeting the diverse needs of patients and carers, where holistic was defined as ‘whole-person care that considered physical, emotional, and spiritual needs’. 24 Third, that providers had sufficient end-of-life expertise to know what to expect as an individual deteriorated, how to prevent or manage symptom exacerbations and how to broach sensitive discussions with patients and carers. Neither Bainbridge et al. 24 nor Firth et al. 28 mentioned balancing supply with demand and, although our case study sites had very different lengths of involvement, nearly all had an ethos of not discharging patients. This contrasted with commissioners’ preferences for equity of access across the population above length (and frequency) of involvement. From Firth et al. ’s28 data, programmes found to significantly reduce costs most frequently reported components of on-call, around-the-clock home visits available (not necessarily provided by the HAH service), a customised care plan driven by individual needs and linkage with hospital. However, the lower costs found in our larger, 24/7 services (model 1) were associated with fewer home visits, particularly by HAH staff, with no increased informal caring time.

Front-line co-ordination and communication

Luckett at al. ’s26 rapid review focused on essential attributes of palliative care as a more meaningful unit of analysis than models, and identified case management as a recurring key component to meeting patient/carer needs across the medical–social spectrum. However, case management exists as part of a complex intervention, so it was difficult to claim that ‘positive outcomes have resulted from case management per se’. 26 In addition, other attributes appeared to overlap with case management, including integrated care (e.g. palliative services supporting GPs/nurses in rural areas), managed clinical networks (formal linking of health-care professions across settings and organisational boundaries) and shared care (lead clinician co-ordinating with health professionals across disciplines). We did not find explicit reference to case management, but integration and co-ordination was a key programme theory, with experiences ranging from highly positive, when HAH service providers acted as the go-between with other providers when carers had struggled to ‘make things happen’, to carers stating that they had to take on the role of co-ordination themselves. Taking on the role of co-ordinating care can add to the structural burden for carers, having to navigate service fragmentation, complex bureaucracy, lack of transparency and gatekeeping, albeit this is more marked with generic services for older people. 148 However, our qualitative data indicated that it was front-line staff who worked hard to co-ordinate services, often when meeting each other in the patient’s house (micro level), regardless of their organisations’ formal policies or arrangements (meso level). These front-line co-ordinations and communications were opportunistic and therefore not without limits, but suggest that when staff are allowed to use their initiative, without excess organisational constraints, and even facilitated by structural supports such as shared records, this facilitates a co-ordinated service, possibly reducing carer burden. However, there needs to be a balance between structure/policy (meso level) providing necessary parameters and trusting staff (micro) to use their initiative. Ganann et al. ’s125 review of factors influencing the optimisation of home care nurses in Canada also identified interprofessional and interorganisational collaboration as something that develops at the micro level when staff have ‘opportunities to interact and communicate’, but it must be consolidated by ‘leadership that supports joint collaborations and joint capacity building’. This links with sustainability (next section), in which we found a tension between hospices needing to brand their unique contribution while also seeking to co-ordinate care with other services.

The importance of co-ordination relates to care navigation, discussed earlier, in which the goals are to link patients and families to primary care services, specialist care and community services; provide more holistic patient-centred care; and identify and resolve patient barriers to care. 149 These goals appear to be common sense, but were not always the case, and HAH services appeared to be filling service gaps that shaped the whole system. Our carers consistently expressed the need for continuity in service provision, whoever provided it, indicating the need for a whole-system approach to EOLC, from diagnosis to bereavement. However, HAH input was significantly shaped by historical commissioning decisions and the need to fill service gaps (particularly community nursing) alongside supplementing existing services. It was unclear if the orientation on the medical–social continuum was by choice or necessity, driven by a competitive marketplace where each hospice had to demonstrate its unique contribution to raise funds from commissioners and the public.

A whole-system approach

A whole-system approach is not a new concept, as the first government end-of-life strategy was published in 2008 and ‘strongly recommended’ a whole system with ‘a care pathway approach both for commissioning services and for delivery of integrated care’,3 from the initial identification of those at end of life to post-bereavement support for carers (Contains public sector information licensed under the Open Government Licence v3.0). The intention was that, through enhancing choice, quality, equality and value for money, people would be supported to have a ‘good death’. Subsequent National Institute for Health and Care Excellence quality statements, appertaining to the last 12 months of life,150 and the ambitions for a palliative and EOLC framework,143 also endorse a co-ordinated approach across the care pathway. Care should be ‘coordinated effectively across all relevant settings and services at any time of day or night, and delivered by practitioners who are aware of the person’s current medical condition, care plan and preferences’. 150 However, it is less clear how what amounts to (but is not called) a whole-system approach should be organised and sustained, and the inequity remains between the small proportion of people who receive high-quality EOLC, often those from high socioeconomic status (and more likely to have a cancer diagnosis in our study), and the majority who receive generic care. 151

More recent literature on patient (or carer) navigation programmes suggests that navigators can help address service fragmentation, for example communicating across organisations and facilitating access to care. 152 The original concept was intended as a strategy to improve outcomes in ‘vulnerable populations by eliminating barriers to timely diagnosis and treatment’153 and the literature largely appertains to early diagnosis and treatment. 154 However, there are many models reflecting different orientations (medical, social or combined) and patient groups, but the development of these programmes indicates ‘unmet needs for coordination and facilitation of care, particularly in relation to populations for whom social determinants of health create additional barriers to accessing social and health care services’. 152 This was reflected in our findings, in which university-educated carers rated service quality significantly higher (VOICES 2) than those without a university education. This inequality may reflect demand outstripping supply, as reflected in an evaluation of a HAH service (data collected 2012–13) that found that the most deprived and rural area of the county was poorly served by HAH services. 44 Care inequality between cancer/non-cancer has been found in other literature155,156 and is not a new finding. However, we also found variation by sex: when a patient was female, the carer was 0.409 times less likely to report that they received sufficient care (VOICES 1, predominantly male carers), and female carers were 2.938 times more likely than a male carer to report a good/almost perfect death experience (total QODD score > 70).

Internal/external orientation: a trade-off

One approach taken by hospice services to ensure that they had the widest possible coverage was an external-facing orientation whereby managers made every effort to sit at the table with policy-makers and commissioners so that the hospice had a stake in decision-making. It was not only about being on strategic boards, but also related to branding and marketing the hospice to ‘communicate, differentiate, and enhance’159 its unique contribution to EOLC. All sites had active marketing teams, demonstrating the tension between the ethos of altruism and compartmentalised commercialisation. 158 In our consensus workshops, we used the phrase ‘Hospice charities may give the impression to the public that they are fully dependent on charitable funding . . . to make their fundraising activities more effective’, which was clearly contentious, but reflected a tension between public accountability, the constant need to generate funding and the ethos of being a charity. Branding is a necessary tool to compete, but as the pool of resources becomes more limited, competition increases, and highlights a tension between adhering to market forces while trying to stay true to the ethos of an organisation. Branding is particularly challenging for organisations such as HAH services where different stakeholder groups hold strong and personal values, but it is a necessary tool to communicate an organisation’s role. 159 However, some service leads commented that commissioners had varied levels of understanding and experience of EOLC and some appeared to lack the required skills and knowledge, as found elsewhere. 160 Several toolkits are available, including, for example, Commissioning Person Centred End of Life Care,161 which acknowledges the complexity of commissioning, ‘involving a dynamic and continuous process of review and improvement to ensure alignment with changes to national policy, commissioning models, local demand, workforce changes and procurement options’. At the time of interview, commissioners were transitioning from working predominantly at the level of the CCG to commissioning a range of services at larger scale through Sustainability and Transformation Partnerships (STPs). Managing this requires significant competencies, yet these may not be well defined during recruitment; consequently, commissioners may be appointed without the full range of skills,160 although some of our managers suggested that inexperienced commissioners allowed the HAH more leverage. The only formally allocated budget relating to EOLC in the NHS is specialist palliative care and the NHS CHC budget, ‘yet controlling the size of this pot is often something that is said to feel out of the control of CCG commissioners’. 160

Commissioning behaviours may also be influenced by a reported power imbalance between commissioners and service providers, exacerbated by the fast turnover of commissioning staff; the move away from smaller commissioning models (CCG level) towards the larger STP level could help transfer more power and resources back into the hands of commissioners. 160 However, this could be to the detriment of HAH services, and even when sites had an excellent relationship with their commissioner, we did not find evidence that this resulted in securing increased funding. In fact, some commissioners appeared complacent, assuming that if the HAH service was pushed, it would raise further funds (Box 8).

BOX 8 - Influences on sustainability and responses to uncertainty

Internal facing: more responsive to micro-level factors

• Staff focus:

  • manageable caseloads and workloads

  • investing in training and education – all levels, all staff

  • support and mentorship embedded

  • autonomy is valued alongside time to care.

• Outcome: high staff morale; better retention than external-facing organisation; reputation for high-quality care at the micro level, but at the cost of having a low local/national profile and little leverage with other providers/commissioners.

External facing: more responsive to macro-/meso-level factors

• Macro:

  • establishing national representation and reputation.

• Meso:

  • building reputation and community awareness

  • influencing local commissioners

  • educating/upskilling other providers.

• Outcome: high profile at meso/macro level, but potentially at the cost of staff morale, with relatively high rates of staff attrition.

In contrast to externally focused HAH services, other sites appeared internally focused, with an emphasis on staff well-being, support, and education and training, and internal service development. Chamanga et al. ’s162 review of factors influencing recruitment and retention of RNs in community nursing identified work pressure (caseload and workload) as an important factor influencing the decision to remain or leave employment. Increased pressure correlated with reduced commitment and ‘subsequent negative job satisfaction, impacting on patient safety and quality of service’,162 alongside emotional exhaustion and depersonalisation. This mirrors our data, in which carers consistently commented that HAH staff had the time and emotional space that non-HAH staff lacked. Chamanga et al. 162 also identified lack of autonomy, lack of educational opportunities, lack of appreciation by managers and salaries as factors hindering retention. Except for salaries (which we did not explore), these factors had all been identified as tools to maximise retention by HAH providers/managers.

Market forces, skills mix and managing demand

Haslam et al. 163 developed a business model for hospices to account for sustainability, based on interviews with key hospice stakeholders. At the centre were hospice staff and volunteers, working for patients/families, and commissioned by the NHS and commissioning bodies within the wider context of government policy, legislative arrangements and regulations. Haslam et al. 163 argued that, as funding sources have widened to include a portfolio of health-care contracts, lottery income, trading profits from shops and earnings from financial investments, these newer funding streams are prone to uncertainty and volatility, particularly in the current financial climate, and hospices must work continually to adjust their approach. 163 These changes have ‘encouraged a shift towards a more administrative and managerial led medicalization of palliative/end of life care’ as hospices have ‘migrated from their initial charitable financing model to one that has become embedded within a wider system of healthcare funding . . . challenging their traditional independence’. 163 The reliance on the NHS for 20–35% of their income has added new risk alongside demands for value for money, specialist care, expecting more year on year and increased bureaucracy. 163 Our data also evidenced commissioner expectations that hospices would provide specialist care and increased capacity while remuneration stayed static. However, we found that not all HAH services accorded with increased medicalisation, such as the socially orientated HAH services (see Figure 16).

Haslam et al. 163 identify three interconnected issues that threaten sustainability. First, having to secure more income in an increasingly fragmented and volatile market, as already discussed. Second, recruitment, retention and skills issues with the expectation that staff will be highly skilled palliative specialists, but also generalists able to manage increasing numbers of chronically ill patients with non-cancer diagnoses, alongside trying to match salaries to NHS and private pay scales. Third, the increasing complexity of chronic illnesses bringing people into the system with longer life expectancies than previously. All of these make it increasingly difficult to maintain a financial buffer to allow for changes in income or expenditure and to plan for service redevelopment or update buildings/facilities. 163 Our sites discussed the need to maintain a financial buffer and were aware of the arguments around accepting more patients with long-term conditions and longer prognoses. Referral criteria varied, but all services were selective and limited intake in ways that were dictated by capacity but meant that services dealt with only a subset of people. How this affected (or influenced) staff mix and skill set was hard to ascertain, but length of involvement, from referral to death, varied widely. Services that were involved for significantly longer (> 3 months) mostly provided initial expertise from qualified staff and telephone monitoring/advice, but limited hands-on care, whereas HCA-led services focused on providing personal care for a much shorter duration. This reflected the more medical paradigm of the former compared with the latter, but there was no obvious association with internal-/external-facing orientation.

Ganann et al. ’s125 review of home care nurses in Canada explored how manageable workloads, funding models and appropriate staff allocation influenced staff mix and staffing levels. The issues are equally applicable in the UK, where home care staff also have to manage heavy workloads and increasingly complex patient needs and the funding model promotes competition, driving down skill levels and ‘the ability to align staffing mixes with client needs’. 125 Our HAH sites guarded against this through maintaining their palliative focus, as a way of managing caseloads, staff mix and skill set.

When comparing internal- and external-facing sites, it was apparent that the latter had a strong focus on educating others, for example GPs and paramedics. Firth et al. 28 regarded the ‘extent of education/training provided to external professionals’ as a defining feature of palliative care models, but this was less apparent with internal-facing sites. The difference between external- and internal-facing organisations was also reflected in service innovation, for example one site had a markedly external focus (at the meso level), but there was a sense in which their own staff did not feel supported or included in decision-making. This contrasted with one site with strong internal integration whereby all staff felt listened to and the service focused on what it could provide that the community needed. Not all sites were one or the other, but those that fell in between appeared to find it difficult to provide both a cohesive service with contented staff and to have a meaningful seat at the table with commissioners. One exception was a site with an internal focus, but not strongly so, because the hospice had the security of taking only patients with NHS CHC funding, so there was less imperative to innovate externally.

Arguably, commitment to marketing and branding the hospice, demonstrating its uniqueness and maintaining a good reputation took priority above almost all else, particularly for externally focused sites, stemming from the need to generate increased funding as NHS monies stayed the same year on year while caseloads increased. Our qualitative data also suggested that the larger, 24/7 services in model 1 had a strong discourse around demonstrating their value for money. However, for all services, this need to define and sustain themselves could lead to inflexibility and conflict with other objectives. For example, integration and co-ordination clashed with being unique and maintaining the brand; at our consensus event, commissioners commented that hospices were not ready for joined-up commissioning. A similar tension centred around OOH services: hospices wanted the contract but did not want to take on any generic community nursing roles. Given the policy drive for integration this suggests that hospices wedded to marketing their uniqueness may not do well, although the qualitative data did suggest that smaller providers were more open to integration.

Volunteers: an underutilised resource

For the majority of HAH services, the hospice building was a visible symbol of the organisation’s function that helped raise awareness, engage volunteers and promote community fundraising. However, this did not necessarily ensure sustainability; for example, one of our sites was situated in a building that was highly valued by all stakeholders, but was ultimately too costly to maintain. Given that hospices depend on their communities for both income and volunteers, linking with the local community is a key factor in hospice sustainability. 164 Volunteers can bridge the gap from hospice to community, ‘both in a philosophical sense and a practical way of giving information and promoting fundraising’,165 and can help to reduce the fear and taboos around hospice care. 164

Our data found that volunteers were integral to sustainability, for example providing transport and volunteering in day and inpatient services, as found elsewhere. 164 However, our quantitative data suggested that patients and carers had very little contact with volunteers; only one site integrated ‘semi-professional’ volunteers into the HAH team, and clinicians had reservations about using them, based around overstepping boundaries at such a sensitive time. Most of the case study sites regarded volunteers as part of a triad (hospice, volunteer and patient/carer), with the hospice monitoring the relationship between patients/carers and volunteers. Volunteer co-ordinators acknowledged potential pitfalls and the need for clear boundaries, but were less risk averse than clinicians, although acknowledging potential risks to reputation. Only one HAH service was part of an organisation with a wider Compassionate Neighbours scheme, based on a community befriending model, in which the relationship was negotiated between volunteer and patient/carer, with minimal hospice oversight.

Aoun et al. 166 argued that professional care can only supplement, not replace, existing social networks, so it is important to support all assets in the community, given that it is the community that supports most people. Our carers wanted continuity post bereavement; with appropriate training and mentoring, volunteers could fill this gap. The public health approach to EOLC has argued for two decades that promoting palliative care has the potential to address inequity of provision, drawing on the wider community to address the continuity between long-term conditions, EOLC and bereavement. 167,168 The compassionate community model of EOLC draws on the patient and carer’s existing social network, including a small, inner network of close family and friends who perform personal tasks; an outer network of family, friends and neighbours who can assist with routine tasks such as shopping, cooking, cleaning, walking the dog and gardening; community members who can assist with routine or other peripheral activities; and health and social care professionals. The focus is on building a resilient network to support both patient and carer, emotionally as well as practically, and encouraging carers to accept support when the default position is often to decline. 169 However, Aoun et al. 166 acknowledge that this support is less effective post bereavement.

Despite the undoubted positives of the volunteer workforce, our volunteer co-ordinators highlighted problems around reliability and lack of flexibility. Scott et al. 164 also issued a note of caution that volunteers may not always be available or willing to meet the increasing demand that is anticipated.

Identify the range and variation of hospice at home models operating across England and categorise the models by type, key features and setting

Services calling themselves HAH in England varied in multiple dimensions (i.e. size and setting, patient referral criteria, services provided, staffing, funding). It was not possible to deduce a ‘definition’ of a HAH service, or even to easily allocate them into broad types or categories. In common, they all offered care designed to support patients approaching the end of their lives at home, provided and supported by staff with experience and expertise in palliative care and EOLC. Almost all HAH services provided personal care, psychosocial support and symptom management, but not all provided this 24/7. The majority of services were providing care for, on average, 1 week–2 months from referral, and most had staffing with a greater proportion of HCAs than of RNs. Two-thirds of services reported charitable sources as the main source of funds.

Assess the impact of each model on patient and carer outcomes and explore the experiences of patients, family carers, providers and commissioners of the different hospice at home models

For people approaching the end of their lives who wanted to die at home, HAH services overall provided care that was likely to deliver ‘a good death’ [median QODD score 70.7 (range 0–100, with 70 a ‘good’ death)], was highly valued by its recipients and was recognised by them as special(ist) in comparison with other services. The majority of HAH services overall were being delivered to patients dying of cancer (77%). HAH services also assisted people to achieve their PPOD; 73% of patients achieved their PPOD, with no statistically significant differences between the four service models, although the proportion was higher in model 2 (smaller, 24/7 services) than in the other models.

Higher (i.e. better) QODD scores were associated with patients having died at home or in a hospice; female carers; university-educated carers; and patients having known they were dying for a long longer time. When all items were adjusted for, smaller services (models 2 and 4) attained a significantly higher QODD score. The qualitative analysis suggested that this might be explained by their ability to be more agile, to integrate better with other services and to provide more specialised care.

Carer satisfaction with the help and support received from health and social care services and the quality of those services was high. In terms of the help and support received, female patients reported a lower level of support. Carers in model 2 (smaller, 24/7 services) were eight times more likely than carers in other models to report that they had received all of the support they needed. In terms of the quality of services, university-educated carers were associated with better ratings, and patients dying in hospital were associated with worse ratings. There was a trend for carers in model 2 to report better quality of support. Qualitative data described the difference in care provided by HAH versus other services and focused on the time, person-centredness, expertise and the quality of relationships offered.

Investigate the resource implications and costs of patient care in each model

There tended to be more formal and informal caring closer to death, but there was a lot of individual variation. ‘In-home’ nursing and personal care was the largest item of service use and was delivered collaboratively in all models by local NHS nursing/HCA services (accounting for about one-third of visits), HAH professionals and social services carers. The highest daily average number of in-home visits was in model 2 (smaller, 24/7 services) and the lowest was in model 1 (larger, 24/7 services).

Service use in relation to outcomes

Carers in model 2 reported higher QODD scores and higher levels of satisfaction, which may be associated with the higher number of nursing or caring visits that they received in the pre-death period. Although costs in model 1 in any period were lower than in the other models, and patients received less intensive support, they were in the study longer, and they may therefore have received an overall larger amount of resources. This model of care may be less cost-effective because outcomes in model 1 were generally worse than in model 2, in which support was more intensive.

Identify the enablers of and barriers to embedding hospice at home models as part of service delivery

Hospice at home services reported that the main barriers to providing their services were geography, getting other services to provide care in a timely fashion and inadequate funding. Difficulties accessing equipment and medications (both drugs and administration) in the home were also challenges.

Search 4

Database searched: PubMed only.

Date searched: 5 June 2017.

(((“hospices”[MeSH Terms] OR “hospices”[All Fields] OR “hospice”[All Fields] OR “hospice care”[MeSH Terms] OR (“hospice”[All Fields] AND “care”[All Fields]) OR “hospice care”[All Fields]) AND home[All Fields]) AND (“UK”[All Fields] OR “England “[All Fields] OR “Wales”[All Fields] OR “Scotland”[All Fields] OR “Northern Ireland”[All Fields]) AND (palliative[All Fields] OR “end of life”[All Fields])) AND (“2014/09/12”[PDAT] : “2017/06/05”[PDAT]).

Number of articles found: 97.

Search 5

Database searched: PubMed only.

Date searched: 8 June 2017.

((“palliative care”[All Fields] OR “Hospice Care”[All Fields] OR “end of life”[All Fields] OR terminal$[All Fields]) AND (“rapid response”[All Fields] OR “crisis intervention”[All Fields] OR “hospice at home”[All Fields])) AND (“2015/07/31”[PDAT] : “2017/06/08”[PDAT]).

Number of articles found: 45.

Nine additional articles were found to be relevant and were added to the total number of articles screened for the systematic literature synthesis (including one article we were made aware of currently in press).

Search 6

Database searched: PubMed only.

Date searched: 25 June 2019.

(((“hospices”[MeSH Terms] OR “hospices”[All Fields] OR “hospice”[All Fields] OR “hospice care”[MeSH Terms] OR (“hospice”[All Fields] AND “care”[All Fields]) OR “hospice care”[All Fields]) AND home[All Fields]) AND (“UK”[All Fields] OR “England “[All Fields] OR “Wales”[All Fields] OR “Scotland”[All Fields] OR “Northern Ireland”[All Fields]) AND (palliative[All Fields] OR “end of life”[All Fields])) AND (“2017/06/05”[PDAT] : “2019/06/25”[PDAT]).

Number of articles found: 75.

Search 7

Database searched: PubMed only.

Date searched: 25 June 2019.

((“palliative care”[All Fields] OR “Hospice Care”[All Fields] OR “end of life”[All Fields] OR terminal$[All Fields]) AND (“rapid response”[All Fields] OR “crisis intervention”[All Fields] OR “hospice at home”[All Fields])) AND (“2017/06/08”[PDAT] : “2019/06/25”[PDAT]).

Number of articles found: 44.

Three additional articles found to be relevant in these two searches. These included the article identified in 2017 that was in print and the OPEL study protocol paper.

Search 8

Database searched: PubMed only.

Date searched: 25 June 2020.

(((“hospices”[MeSH Terms] OR “hospices”[All Fields] OR “hospice”[All Fields] OR “hospice care”[MeSH Terms] OR (“hospice”[All Fields] AND “care”[All Fields]) OR “hospice care”[All Fields]) AND home[All Fields]) AND (“UK”[All Fields] OR “England “[All Fields] OR “Wales”[All Fields] OR “Scotland”[All Fields] OR “Northern Ireland”[All Fields]) AND (palliative[All Fields] OR “end of life”[All Fields])) AND (“2019/06/25”[PDAT] : “2020/06/25”[PDAT]).

Number of articles found: 278.

Search 9

Database searched: PubMed only.

Date searched: 25 June 2020.

(((((“palliative care” OR “hospice care” OR “end of life” OR terminal$)) AND (“rapid response” OR “crisis intervention” OR “hospice at home”)) AND “last 1 years”[PDat])) AND (UK OR England OR Wales OR Scotland OR “Northern Ireland”).

Number of articles found: 169.

Search 10

Database searched: Google Scholar.

Date searched: 25 June 2020.

“Hospice at home” in the last year.

Number of articles found: 11.

Results

Eleven of the articles in searches 8–10 were relevant. Two related to the OPEL study.

Quantitative summary

• Mechanism (M).01: proposing a business plan and ‘selling it’ to commissioners.

• M.02: providers take the lead and provide services without a great deal of scrutiny, trust.

• M.03: board of trustees or executive leader develop a reputation for excellence, meaning they are trusted to use funding well.

• M.04: taking on a lead provider role and subcontracting with other providers in the area.

• M.05: provider partnerships may enable small organisations to maintain their responsiveness and alacrity.

• M.06: accepting a block contract from commissioners to enable predictability to the funding available.

• M.07: securing NHS CHC funding to provide or part-fund services.

• M.08: accept NHS funding that will support the HAH service and requires it to deliver other (‘non-palliative care’) roles, such as OOH catheter replacement, general rapid response.

• M.09: accept funding for elements of service from personal health budgets.

• M.10: develop a ‘profit-making’ element of the service that charges and subsidises other elements of service provision.

• M.11: hospice charities may give the impression to the public that they are fully dependent on charitable funding (i.e. they do not overtly advertise their access to statutory funding), to make their fundraising activities more effective.

FIGURE 18.

Mechanism importance versus application for service providers only. M.01: one service provider said this was done at their HAH service, but they did not see it as important; M.02: one service provider said this was done at their HAH service, but they did not see it as important; M.03: one service provider said this was done at their HAH, but they did not see it as important; M.05: one service provider said this was done at their HAH, but they did not see it as important; M.08: one service provider said this was done at their HAH, but they did not see it as important.

FIGURE 19.

Ranking of mechanism importance (Leeds only, sheet for professionals only). Response rates: M.01 – 95%; M.02 – 100%; M.03 – 100%; M.04 – 95%; M.05 – 95%; M.06 – 85%; M.07 – 90%; M.08 – 90%; M.09 – 95%; M.10 – 95%; M.11 – 80%.

Member of the public responses

Mechanisms presented to members of the public

• M.01: proposing a business plan and ‘selling it’ to commissioners.

• M.02: board of trustees or executive leader develop a reputation for excellence, meaning they are trusted to use funding well, and provide services without a great deal of scrutiny.

• M.03: taking on a lead provider role and subcontracting with other providers in the area.

• M.04: provider partnerships may enable small organisations to maintain timely responsiveness.

• M.05: accepting a block contract from commissioners to enable predictability to the funding available.

• M.06: securing NHS CHC funding to provide or part-fund services.

• M.07: accept NHS funding that will support the HAH service and requires it to deliver other (‘non-palliative care’) roles, such as OOH catheter replacement, general rapid response.

• M.08: accept funding for elements of service from personal health budgets.

• M.09: develop a ‘profit-making’ element of the service that charges and subsidises other elements of service provision.

• M.10: hospice charities may give the impression to the public that they are fully dependent on charitable funding (i.e. they do not overtly advertise their access to statutory funding), to make their fundraising activities more effective.

FIGURE 20.

Member of public ratings of mechanism importance.

Quantitative summary: integration mechanisms

• M.01: a blended service is provided whereby different services can provide what is needed by the patient without hard boundaries around particular roles; honorary contracts with NHS may facilitate this.

• M.02: budgets and workforce and organisational structures are managed in an integrated way across provider organisations.

• M.03: a secondment into a different setting (e.g. a health-care worker into social care) may facilitate integration by the ‘learning of another language’.

• M.04: other providers trust the HAH service to make assessments and will act on its recommendations.

• M.05: an element of flexible workforce is employed (by the HAH service or others) or staff are flexibly deployed from other areas (e.g. inpatient unit).

• M.06: clinical records are shared with other organisations.

• M.07: DNs provide and administer all anticipatory medications (agreed division of labour).

• M.08: advance plans are made and the need for medications and equipment are anticipated and provided on time.

• M.09: the HAH service may have medical or non-medical prescribers available within its service.

• M.10: the HAH service has direct access to shared equipment stores or has its own stores.

FIGURE 21.

Approaches used in the respondent’s local HAH service (represented by respondent’s professional group).

Quantitative summary: integration with hospice at home

FIGURE 22.

Number of respondents (out of 46) reporting integration between HAH service and these organisations in their area. IPU, inpatient unit; OT, occupational therapy; SPDN, specialist practitioner district nurse.

Qualitative feedback summary: member of the public sheet