This realist evaluation identified programme theories that explained the contexts and mechanisms leading to optimal outcomes for patients and their carers. Qualitative, quantitative and health economics data were cross-referenced through the analysis to enrich understanding.
This chapter will discuss the salient actions HAH services undertook that appeared to lead to optimal outcomes. The discussion will be structured around three key areas. First, there is the impact that HAH services had on the patient and their carer, with HAH services creating a valued partnership that cared for both the patient and the carer. Impact was enhanced because HAH staff had the time to care, and their expertise and professionalism was a consistent feature of carer feedback. This was particularly notable when the patient–carer dyad was a couple, because care was moulded around both parties, as a unit, to support and meet their needs. Second, we discuss how the model of HAH care influenced this impact and shaped service provision, ‘filling gaps’ in statutory services. There appeared to be a continuum of models, from a predominantly medical model to a largely social model of care, reflected in, for example, staff mix. Third, issues of sustainability reflected the importance of reputation and maintaining influence in the commissioning landscape, branding, finances and fundraising, which had to be balanced against the needs of staff and recruitment/retention issues.
Hospice at home service impact on the patient–family carer dyad
Hospice at home services enabled most patients to achieve their PPOD (73%, 162/222 patients who had a PPOD and known place of death), which is similar to the results of other studies of home-based palliative care programmes.11,120,121 Ali et al.122 reviewed the deaths of all patients (n = 2176) known to a specialist palliative care service over a 5-year period (2009–13); 73% of patients who expressed a choice about their PPOD, and 69% who wanted to die at home, were able to achieve their preferences. However, during their illness, 9.5% of patients changed their preference whereas 30% of patients either refused to discuss it or no preference was elicited for place of death.122 We were unable to ascertain if patients changed their PPOD, but 21.8% (74/339) did not express a PPOD when entering the study, possibly reflecting the large variation in length of time from recruitment to death. Ali et al.122 found that patients whose PPOD was unknown were more likely to be admitted to hospital for EOLC, but we did not find this association.
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
How the model of hospice at home shaped care
Our typology categorised HAH services by size and availability of 24-hour care, but there were significant service variations within each model. Firth et al.28 acknowledged the diversity of staff configurations, processes and interventions in specialist palliative care and used a mixed-methods approach to derive 20 criteria. An early finding was that stakeholders struggled to define their model, owing to the complexity of providing care across multiple settings and there being multiple services within each setting, often overlapping. Our case studies demonstrated similar organisational complexities, with multiple services not necessarily integrated even within an organisation. For example, one service provider commented on silo working between the day service (social model), inpatient unit (medical model) and HAH service (mixed). However, the different emphasis on social versus medical orientation resonated throughout case study sites, with HAH services often bridging the medical–social continuum of EOLC.
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. (Figure not reproduced here; see the original article.)
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).
Sustainability
Sustainability has been defined as being able to survive, so that the organisation can serve its purpose and fulfil its commitments to its clients and the community in which it operates.157 Our findings suggested that sustainability related to a hospice’s orientation to strategic and front-line integration, which reflects a classic organisational problem in the private sector between integration (internal facing) and differentiation (external facing),158 or a trade-off between pleasing commissioners and looking after staff.
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).
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.
Summary
This chapter explored three key areas: (1) the impact of the HAH model of care on the patient–carer dyad, (2) how the model of HAH shaped care provision and (3) sustainability. HAH enabled most patients to achieve their PPOD with sufficient practical and emotional care to support the patient–carer dyad.
Our study suggested tensions faced by commissioners and organisations when providing HAH services. Larger, 24/7 services were associated with lower costs, but with worse QODD scores, than the smaller HAH services. This appeared to be linked to the higher proportion of HAH visits closer to dying, but also highlighted an inequity between the small proportion who received HAH and the majority of EOLC in the community, constrained by time and lack of expertise.
Our typology categorised HAH services by size and availability of 24-hour care, but also important was how HAH services aligned themselves along the medical–social care continuum, differentiated by staffing configurations and interventions. However, it was unclear if the orientation on the medical–social continuum was by choice or necessity, driven by a competitive marketplace where each HAH service had to demonstrate its unique contribution to be sustainable.
Sustainability was a major tension for all HAH services and appeared to relate to a HAH service’s orientation to strategic and front-line integration, reflecting a classic organisational problem in the private sector between integration (internal facing) and differentiation (external facing).
Only one service incorporated volunteers directly in HAH, with others citing concerns around how appropriate or useful volunteers would be in the last phase of life. However, this appeared to be a missed opportunity that could help bolster sustainability, provide support for patient and carer, and enable continuity of care post bereavement.
Arguably, commitment to marketing and branding the HAH, maintaining a good reputation and ensuring sustainability took priority above almost all else, but there were examples in which this led to inflexibility and conflict with other objectives, for example integration and co-ordination.