Palliative care and patient preference

 
6 October 2017                     
 
Dr Ayman Shenouda

 
A focus on palliative care
 
There was some great discussion generated from my recent blog on frailty and ICU outcomes. The importance of patient empowerment and preference towards care in the community resonated with many. Palliative care is an important extension to that discussion. This is an area, which we know is expanding with demand which is set to rise alongside disease rates and an ageing population. Despite a stronger national focus on palliative care, the patient’s preference for community care is not translating into policy.
 
Palliative care should improve the quality of life of patients with an active, progressive disease that has little or no prospect of a cure.[1] More and more we’re seeing patients’ preference for palliative care in the home. We know that 70 percent of Australians would rather die at home than in hospital.[2] Whatever the choice, the model of care must enable access to all patients facing a life-limiting illness. We know that those who would get the most benefit from palliative care often accessed it too late.[3] There is still so much in this area that we need to fix. I think a good place to start is ensuring our patients’ preferences around dying at home.
 
Access and choice
 
In finding a way through the system to facilitate choice for more community-level care we are still a long way from enabling equitable access. Early access to palliative care services is an internationally recognised policy goal.[4] However, it is clear that our shared policy goal is not being met in Australia when it comes to access and choice.
 
This highlights our first policy failure, which is around equity in access which of course stretches beyond just palliative care and can be persistent throughout life for some most in need.
 
Where you live and your socioeconomic status has some bearing on choice in terms of preference of setting in palliative care. AIHW 2014-15 data released early in the year showed that there is a higher proportion of palliative care-related hospitalisations (22.4%) in the lowest socioeconomic status areas. The rate of palliative care-related public hospitalisations was also highest for those living in these areas (30.9 per 10,000 population). Conversely, the rate of public palliative care-related hospitalisations was lowest for those living in the highest socioeconomic status areas (14.5 per 10,000).[5]
 
Funding and policy context
 
Funding and policy context really matters here. This is because funding models clearly influence service provision and the development of palliative care services. Funding for palliative care involves a mixed system of public, private and charitable players. A mismatch between policy goals and palliative care funding mechanisms can compromise our shared aim in addressing need. [6] 
 
This leads to the next policy failure which is around service planning and problematic due to care being split across levels of government.
 
Service planning relies on quality data and this is a key gap in palliative care. The sole Physician MBS item numbers map only a very small sample of service provision which really limits service planning, particularly in enabling patient choice to die at home.[7]
 
This palliative medicine focus, while important, is limiting. It means that what is actually occurring at the community level in terms of GP-led palliative care is less likely to inform policy decisions. The undefined role of the general practitioner in palliative care across a range of settings is a contributing factor. While we are seeing more and more GPs with special clinical interests in palliative care meeting these needs in primary rather than secondary care, the system just doesn’t see them.
 
In the absence of item numbers, how can GP-led palliative care ever be fully measured?  GPs play a critical role here. Chronic disease management and home visit item numbers are not sufficient in terms of planning for future demand or in capturing the complexity and non-clinical time involved in providing this care. The only available BEACH data shows that about 1 in 1,000 GP encounters in 2014-15 were palliative care-related, which equates to around 5 encounters per 1,000 population. This is most certainly an underestimate of the actual numbers given services delivered by GPs cannot be established from Medicare data. 
 
Service integration
 
Another key issue is that palliative care services have many individual providers both public and private. It is clear we need to get better at ensuring a more seamless service transition for the patient and family. Service integration prioritising multidisciplinary care at the local level relies on flexibility to facilitate the integration of funding streams. In rural areas, this can be particularly challenging even when there is a strong commitment by local service providers.
 
Service integration at the primary care level remains a key policy failing and much more effort is required to provide the necessary supports to enable a more integrated system.
 
General practice is the gateway for patients to the broader health system. We need new expanded funding measures specifically designed to enable service integration for palliative care in the community. Efficiencies can be found in community-based care, yet there is a reluctance to put the system supports in place to make it happen.
 
The recent $8.3 million announced in the Federal Budget will help boost the role that the PHNs have in coordinating end-of-life care. It is understood that the funding will support the provision of a facilitator which may help take the pressure off GP practices who are fulfilling much of this role already for their patients.[8] But much more needs to be done in the area of facilitating greater access to GP-led palliative care services. Building local capacity to address increasing and future demand will require a significantly larger investment than we’ve seen to date.
 
Capturing broader perspectives
 
We know that demand for palliative care in Australia will grow. This, in turn, requires an expansion of home and community care in meeting patient preference. An important policy perspective needs to be captured from those receiving care and their caregivers. This will help us work through further how we can improve services to support dying at home.
 
A final additional focus therefore needs to be on the patient and caregiver if we are going to get this policy right.
 
A qualitative study of patient and family caregiver experiences of Hospice at Home care provides insights. It states that we need to focus on additional supports for older people and those living alone, recognised as high risk of being unable to receive this type of support. More targeted supports for older caregivers who are at a higher risk of caregiver burden are also required. The policy goal here has to be around promoting their quality of life with an emphasis on training for the full care team in the ethos of palliative care to ensure holistic care.[9]
 
Where to now?
 
We know that GP-led community palliative care needs to be prioritised in policy. Yet there remains plenty of barriers limiting service expansion to facilitate this care from within the community and across settings.
Ensuring our system is more responsive to patient choice is of course what needs to drive all policy decisions. We know in this case that it is often a preference for care outside of the hospital setting. But when our system automatically preferences to tertiary care, it makes it harder to facilitate that care. This is unless of course you have well established and integrated service links and a significant local community commitment to make it work.
 
There’s a pattern emerging here and it’s about prioritising patient-centred healthcare in primary care. Access enabling choice, service planning and data capture, integration prioritising GP-led care and encompassing the patient and caregiver perspectives would bring us closer to a more responsive palliative care service system.
 
[1] AIHW. Web Report. Palliative care services in Australia. Last updated 24 May 2017. Available at: https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia/contents/palliative-care-in-general-practice
[2] Palliative Care Australia. National health statistics highlight inequitable access to palliative care. 24 May 2017. Available at: http://palliativecare.org.au/palliative-matters/national-health-statistics/
[3] Parliament of Victoria. Legislative Council Legal and Social Issues Committee. Inquiry into end of life choices Final Report. June 2016 PP No 174, Session 2014-16 (Document 1 of 2) ISBN 978 1 925458 38 1 (print version) 978 1 925458 39 8 (PDF version). Available at:  https://www.parliament.vic.gov.au/lsic/article/2611
[4] Connor SR and Bermedo MCS. Global atlas of palliative care at the end of life (Worldwide palliative care alliance, World Health Organization), 2014, http://www.who.int/ nmh/Global_Atlas_of_Palliative_Care.pdf
[5] AIHW, op.cit. Profile of palliative care related hospitalisations.
[6] Groeneveld EI, Cassel JB, Bausewein C, et al. Funding models in palliative care: Lessons from international experience. McCaffrey N, Cassel JB, Coast J, eds. Palliative Medicine. 2017;31(4):296-305. doi:10.1177/0269216316689015.
[7] Australian Institute of Health and Welfare 2014. Palliative care services in Australia 2014. Cat. no. HWI 128. Canberra: AIHW.
[8] Palliative Care Australia. Budget offers new support to coordinate end-of-life care. 10 May 2017. Available at: http://palliativecare.org.au/palliative-matters/budget-phns/
[9] Jack B.A., Mitchell T.K., Cope L.C. & O'Brien M.R. (2016) Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care. Journal of Advanced Nursing 72(9), 2162–2172. doi: 10.1111/jan.12983

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