Conclusions

This chapter will present the following:

• summary of the findings for each research objective
• synthesis of these findings into a summary of what worked best
• articulation of the limitations of the study
• suggested implications for providers and commissioners
• recommendations for future research.

Summary of the findings for each research objective

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.

Synthesis of the findings: a summary of what worked best

The staffing and operations of a HAH service were optimum when it was integrated and embedded in its particular locality setting with other relevant services and had a seat at the table with commissioners and other providers. HAH providers benefited from taking a proactive approach to securing the available statutory funding and were trusted to do this on the basis of their reputation. On the ground, HAH and other staff often worked well together regardless of organisational arrangements, with a focus on a patient’s needs, and HAH organisations that allowed their staff flexibility and autonomy enabled this.

Other key features of HAH services that promoted good outcomes for patients and their families were as follows:

• Having sufficient time and taking the time to provide seemingly unhurried, person-centred care.
• Developing a supportive relationship with the patient, carer and family (even being perceived as becoming part of the family), which would ideally continue on into bereavement (see below).
• HAH staff who demonstrated knowledge, skills and experience in dealing with death and dying and thereby gave reassurance and confidence in the home.
• Internal investment in the training and support of HAH staff.
• Agility to respond rapidly to changing patient needs, including access to 24/7 advice and support by telephone, and confidence that help would be forthcoming in crises.
• Support from the service directed at assessing and meeting the informal carers’ needs, as well as those of the patient. Expectations, planning, information and points of contact were particularly important to carers.
• Smaller services performed better. Their small size necessitated closer working with other local services and smaller HAH services provided a higher proportion of the total care received.
• However, although the above points had an impact on the last weeks of life, earlier contact (and this was primarily found in the larger services) also positively affected outcomes.

The study also highlighted areas where most HAH services could look to improve their impact:

• Overall, carers were not being offered the bereavement support they would have preferred. Shortly after bereavement, the clear preference was for support from the HAH staff who had been part of the story of caring, and not for referral to other elements of service.
• Hospital at home services could capitalise more on the volunteer workforce by considering a wider range of roles for volunteers and/or by relaxing the bureaucracy around some volunteer roles.

Implications for health-care providers and commissioners

For service commissioners, this study demonstrated that HAH care for people who want to die at home, and have a family/informal carer who can support them, mostly supported patients to experience a ‘good death’ at home and left their carers well satisfied with services. People in receipt of HAH services were very likely to die at home and unlikely to die in hospital; indeed, having been accepted into HAH, patients were, on the whole, unlikely to use inpatient services. Commissioners could therefore utilise some of their budget effectively by funding HAH and achieving objectives enabling choice about place of care and reducing acute hospital pressures. Furthermore, as significant funding for HAH across the country comes from charitable sources, commissioners who spend NHS funds on HAH are likely to get good added value. Commissioners should also consider the sustainability of HAH services when determining the amount of funding and the duration of contracts (which were often too short to provide adequate stability).

Commissioners have important responsibilities for the equity of service availability. With the pressure to provide equitable services, however, some of the key features of HAH that drive better outcomes cannot be compromised, in particular the elements of time, expertise and relationship described above. Commissioners may also want to consider how to work with HAH providers to extend their services to more people, and particularly to address the inequities of provision for those with diagnoses other than cancer.

For HAH service providers, this study identified a number areas for consideration about where their organisation sits on a spectrum and how it might reposition itself to optimise its services:

• Integration–independence. Integration as described above is important, but did provide some challenges, particularly to HAH organisations protective of their ‘branding’, reputation and ‘specialism’. These factors may limit opportunities to participate fully in, for example, collaborative commissioning.
• Medical/clinical–social care. An element of ‘fit’ into the local service landscape that providers should consider is where to place their HAH service on a spectrum from a ‘medical/clinical’ focus at one end to a more social care model (not omitting the relevant expertise) at the other. The timing and accessibility of different elements of input is key.
• Outward investment–inward investment. A third area for service providers to consider hinges around investment in the outward-facing feature of successful services, as partners in wider service planning and provision. There is a balance to be struck with internal investment in the training and support of HAH staff.
• Value for money–quality and intensity. Finally, there is a balance to be struck between providing value for money and providing sufficient expertise and intensity of care to improve patient and carer outcomes.

Study limitations

• The data collection for the study relied heavily on informal/family carers; therefore, we were unable to recruit patients who did not have such a carer involved on a daily basis.
• Key outcomes (QODD and VOICES 1 and 2) relied on self-report.
• We were not able to provide translation services, and therefore could not recruit patients whose informal/family carer was unable to complete questionnaires in English.
• We omitted to gather data on the ethnicity of patients and carers, which was a significant oversight and one that was highlighted at the consensus meetings.
• A significant number of patients admitted to HAH services lived for longer than we had anticipated when the study was designed. As a result, not as many patients as we estimated died during the study and thus post-bereavement data were missing.
• The QODD proved difficult and arduous for carers to complete. This also had an impact on recruitment for post-bereavement interviews, which was lower than expected. The QODD and VOICES response rates were < 50%, and there were many missing items in the QODDs that were returned.
• Recruitment of dyads to the study was slow, so additional HAH services were included, creating the possibility of heterogeneity within models and difficulties for interpreting the outcomes. The number of patients recruited by some HAH services was small, and individual HAH services dominated the data in some models.
• The precision of estimates of service model effects was impeded by missing data, notably a failure to obtain the key factor, education level, for 41 carers (> 10%).
• Collection of the service use data (with the AHCR) every 2 weeks proved burdensome when patients were in the study for a lengthy period of time, so the intervals between collection were extended, creating difficulties for assembling a continuous series. The number of AHCRs per patient was low. Closer to death, the dates of AHCR data collection did not coincide with the time periods from death that were used in the analysis; therefore, an allocation algorithm was devised and applied.
• Carers may have had difficulty distinguishing whether in-home nurses and carers came from NHS district nursing services, HAH or social care services. Hence the main analysis was conducted by combining these groups and the examination of the distribution of care between the three services may not be fully accurate.
• Some carers (where more than one informal carer was involved) reported well over 24 hours per day of caring. This, together with use of replacement methods for valuing informal caring costs, may have inflated total informal caring costs.

Recommendations for research

In order of priority:

1. exploration of the scope, training, acceptability and support of volunteers in this specific care setting
2. the timing and personnel involved in bereavement support
3. implications for patients, carers and services of varying the time before death at which HAH care is introduced and the intensity of support that is provided
4. further adaptation and validation of the QODD for UK use, for example 30 QODD questions (sometimes with many non-responses) might be improved via sensitivity analysis.

Summary

This has been the first study, to our knowledge, to attempt to synthesise learning from a range of different HAH services around England, and to report on what features of HAH services, in the local health and social care settings in which they were embedded, gave rise to the best outcomes for patients and their informal carers. This chapter summarises the study’s conclusions and draws out implications for commissioners and health-care service providers. The limitations of the study are articulated, as are recommendations for future research.