This article explores how the principles of prudent healthcare reflect the priorities for care for people approaching the end of their lives. It will consider future challenges to providing high-quality, end-of-life care and look at evidence from within Wales and beyond to find areas where adopting a prudent healthcare approach offers better results for both patients and the NHS.
What does prudent end-of-life care mean?
Prudent healthcare means taking a wise and considered approach to planning and delivering healthcare so it will be sustainable into the future. It is underpinned by a set of principles, which place a focus on genuine co-production; making the most efficient use of skills and resources; reducing harm and ineffective interventions, and taking a properly evidence-based approach to practice.
Taking a prudent healthcare approach as a way to ensure people who are approaching the end of their lives receive the best care and support possible will mean some significant changes:
- Changing professional and public perceptions of what the health service can provide and what treatments, such as palliative care, can achieve;
- Changing relationships so more people are supported to discuss how they wish to live their lives and decide on appropriate treatments as genuine partners in their care;
- Changing responsibilities, which will mean empowering communities to work together to improve their response to people who are dying and those who have been bereaved.
Progress in Wales
The past decade has seen considerable progress in terms of strategy and practice in palliative and end-of-life care in Wales. In 2008, the Palliative Care Planning Group Wales published a report, which made the case for substantial investment in palliative care to secure equity of provision across Wales[i]. This led to increased investment in palliative care clinical nurse specialists and the introduction of 24/7 access to specialist consultant services[ii].
The Welsh Government published its delivery plan for end-of-life care for NHS Wales and its partners in 2013. It has also since sponsored the Byw Nawr (Live Now) initiative, which will encourage communities to engage in conversations and activities which are aimed at promoting a healthy and realistic attitude towards death and dying. Wales now appears – albeit slowly – to be reversing the trend for increasing numbers of deaths in hospitals and fewer at home[iii], however, more than half of all deaths still occur in hospital.
Demographic changes present a huge challenge to the future delivery of end-of-life care. People who are in their last year of life currently account for nearly a quarter of all hospital bed days – more than a million – in Wales[iv]. Research suggests almost three in every 10 hospital inpatients are in their last year of life[v]. This raises serious questions about whether the current model of care is effective, desirable or sustainable.
By 2037, the number of deaths each year is predicted to increase by about 10% to 35,000[vi]. While the Welsh population overall is due to increase by less than 0.1%, the number of people aged 65 and over is predicted to increase by 40% to more than 878,000[vii].
As people live longer, they tend to develop multiple, complex health conditions. One example of this is the projected rise in the number of people living with dementia. By 2021, the number of people with dementia across Wales is projected to increase by 31% and by as much as 44% in some rural areas[viii]. Already, dementia and Alzheimer’s disease are the leading cause of death in women in England and Wales[ix]. But people who are dying with dementia often face significant barriers to getting the care they need towards the end of their lives[x].
Best for the system, best for the patient
Applying the principles of prudent healthcare to end-of-life care provides a valuable opportunity to rethink the very culture around care so it works better for terminally ill people and can accommodate the predicted rise in need in the future. The following examples show how the prudent healthcare approach is often in tune with the journey through care that many people say they want, although complexities do exist. These examples also focus attention on practices which could help to meet the objectives of prudent healthcare.
Conversations, interventions and quality of life
We cannot change the fact that each of us will one day die but for many of us it should be possible to make valuable choices about how to live in our final days, weeks and months. What would matter to us most? Where would we like to be? Who would we like to make choices on our behalf if we were unable to?
The importance of asking these sorts of questions – and the potentially devastating consequences of not asking them – has recently been brought to widespread attention by Dr Atul Gawande in his bestselling book Being Mortal: Medicine and What Matters in the End.
One of Gawande’s most striking assertions is that when people are properly supported to have these conversations, they often make what can be described as prudent choices and have a better quality of life. Perhaps where this is most striking is in relation to the principle of “do only what is needed and do no harm”. A study in Massachusetts found that people with stage four lung cancer who were visited by a palliative care specialist to discuss their goals and priorities for when their condition worsened stopped chemotherapy sooner, experienced less suffering towards the end of their lives and they ultimately lived longer than those who only received the usual oncology care[xi].
Simply having a conversation can therefore prevent unnecessary interventions and improve quality of life. It can also help to alleviate some of the emotional strain on families after bereavement[xii].
A person-centred approach
It is important to point out that a prudent healthcare approach to end-of-life care does not mean saying no to patients and their families if the choices they make are not deemed cost or resource effective. If a person can make an informed choice between pursuing treatments, which could lead to a potentially extended but lower quality of life or stopping treatments and a better quality of life, they must know their wishes will be respected for this conversation to be meaningful. Ultimately, decisions about treatment must be patient-led and person-centred.
Professionals working in palliative and end-of-life care routinely help people facing these complex decisions. For example, a person whose life expectancy is a few weeks may decide to pursue a treatment that may only offer them an extra week because their main priority is to live to meet a grandchild who is due to be born in a month. Another with a similar condition may decide against the treatment because their main objective is to control their pain and symptoms and have the best quality of life at home until they die. Both of these people should be able to pursue the treatment plans they have chosen.
Considering these two cases draws attention to the complexities involved in navigating a prudent healthcare approach while ensuring end-of-life care is person-centred and co-produced.
The right words at the right time
Early intervention is a crucial element of prudent healthcare. As much as possible, conversations about goals, priorities and a clear explanation of options for care and support should happen as soon as it becomes clear that a person’s illness is terminal. These conversations should not be left until the person is in a critical condition.
Advance care planning – an empowering process of discussion, which allows someone to clarify their wishes and preferences – should happen for everyone for whom it is appropriate. It is particularly important to start these conversations early on for people with conditions that lead to a decline in cognitive capacity, such as dementia.
In the spirit of the only-do-what-only-you-can-do prudent healthcare principle, it is worth considering who could be supported to facilitate advanced care planning. GPs, community nurses and care home staff tend to build good relationships with individuals, which lend themselves well to this process.
In Wales, there are a number of positive examples around advanced care planning across health boards, which support staff in care homes to engage in the process with their residents[xiii]. When this is initiated and done well, residents have fewer hospital admissions relating to palliative and end-of-life care. However, pilots show that more training is needed to support staff in starting these conversations.
More radically, evidence shows that encouraging people to routinely make advanced plans can achieve community-wide results. In La Crosse, in Wisconsin, everyone admitted to a hospital or nursing home is guided through a brief multiple-choice form, which asks about their current wishes regarding resuscitation and other medical interventions – it is of course recognised that plans may change, which is no less true of advanced care planning for terminally-ill people[xiv]. This has resulted in a substantial increase in the number of plans in place when people die and fewer days spent in hospital in the final six months of life. It has also made the community much more receptive to having these conversations and led to a much more effective and efficient use of resources.
Changing perceptions about palliative care
A palliative approach to care for terminally-ill people can be a prudent healthcare approach to care.
Palliative care is often recommended for people who have a complex condition that cannot be cured. It is a holistic approach, which aims to treat or manage pain and other physical symptoms and will also help with any psychological, social or spiritual needs of the patient and their family. This approach improves quality of life, minimises harm and reduces the number of aggressive interventions[xv]. When introduced early, it has also been associated with longer life expectancy for people with some conditions[xvi]. It is estimated that between 69% and 82% of people who die will need some form of palliative care[xvii].
There have been significant improvements in the provision of palliative care in recent years in Wales. Yet figures suggest that not everyone who could benefit is accessing palliative care, particularly those with non-malignant conditions and older people[xviii],[xix].
Making sure appropriate palliative care is available to all who need it is a means to deliver prudent healthcare objectives as it can reduce incidences of harmful and ineffective clinical interventions. Educating and training nurses and doctors to have a better understanding of when palliative care is applicable, for example, not just at the very end of life, would be beneficial in producing better outcomes[xx]. Similarly, more needs to be done to improve public understanding of what palliative and hospice care are and who they are for.
The right care in the right place
Having the right community services in place to care for terminally-ill people is another crucial part in pursuing a prudent healthcare approach to end-of-life care. Evidence shows that home-based care can reduce hospital use at the end of life and help more people to die at home in line with their wishes[xxi].
Further research suggests that delivering this community-based care represents a cost saving when compared to hospital-based care, even when GP contacts, community nursing, local authority-funded social care, hospice and hospital care are taken into account[xxii].
People in the last year of life represent a quarter of all bed days in Wales each year. Someone who dies from dementia is likely to have spent more than 50 days of their last year of life as a hospital inpatient[xxiii]. Investing in community care and support could help to alleviate pressures on secondary care services and provide people with care more appropriate to their needs and wishes. Bringing care for people who are approaching the end of their life out of hospital and into the community is possible, and it is possible to optimise quality of care and reduce costs at the same time.
This will involve thinking creatively about community care and the meaning of holistic, person-centred support and developing new partnerships to facilitate this. For example, including housing associations in the planning and delivery of support for people in the final years of life has shown to improve feelings of wellbeing while reducing A&E admissions and GP consultations[xxiv].
Co-producing care in compassionate communities
Achieving prudent healthcare requires patients and the public being empowered as real partners in co-producing care. Thinking creatively about community-based care at the end of life therefore must mean more than developing professional partnerships. Communities themselves can be a powerful untapped resource for supporting people to live as well as possible towards the end of their life.
In his vision of Compassionate Cities, Professor Allan Kellehear sets out a series of policies to implement a compassionate public health approach to dying and loss[xxv]. In England, Kellehear’s ideas have informed the Public Health Approaches to End-of-Life Care Toolkit and the Dying Well Community Charter, which is now being implemented by Pathfinder communities across the country. Pathfinders will be supported by the National Council for Palliative Care and Public Health England to help their local community work together to improve their response to people who are dying and those who have been bereaved. Recognising and developing the public health dimension of care in Wales could provide a great opportunity for communities to co-produce care.
In Australia, there are good examples of linking community development with end-of-life care. The Bringing Our Dying Home project[xxvi] looked at the caring networks of friends and family, which built up around dying people and their primary carers who were supported by a hospice-at-home service. Its results highlight the potentially positive impact on communities of caring for people who are approaching the end of their lives – social capital increased as a result of caring; the community’s capacity for care improved and their “death literacy” increased. Supporting and facilitating these networks has an important part to play in making care sustainable and fostering healthier public attitudes towards dying.
Examples of existing models of community building initiatives in Wales include Marie Curie’s Caring for Carers scheme and its Carers’ Café as well as the Marie Curie ‘Helper’ service, which pairs trained volunteers with someone living with a terminal illness to provide practical support and companionship.
Prudent healthcare means taking an evidence-based approach to care. The Marie Curie Palliative Care Research Centre, in Cardiff, is an important resource to assess whether current practices are effective and consistent. Researchers are already working on a number of projects, which will give us evidence of the effectiveness or not of some aspects of a prudent healthcare approach to finding the most effective pathways of care that are agreed in partnership between professionals and patients:
- Developing an intervention to support lung cancer patients and their clinicians when considering systemic anti-cancer therapy (PACT study)
This study looks at the information people may need when considering treatment options for lung cancer and any support they may require when reaching their decisions. There is evidence that some people with lung cancer continue to receive aggressive treatments when approaching the end of their lives when palliative care might be a more beneficial and realistic option for them.
To meet the principle of co-production, people must be offered the opportunity to take part in discussions about their treatment. Whatever treatment options are taken, people should be fully informed about any potential risks and benefits. Ultimately, the aim of this study is to design an intervention that patients and clinicians can use in their consultations to support them when having these conversations.
- CaNoPy study: A study of the care needs of patients with idiopathic pulmonary fibrosis and their carers
Idiopathic pulmonary fibrosis is a chronic lung disease with no proven treatment and median three-year survival. Symptom burden is high and quality of life poor. Guidelines promote patient-centred approaches, emphasising supportive and palliative care interventions. However, little is known of patient and carer experiences in order to guide care pathways. CaNoPy aims to identify changes in individuals’ and carers’ perceived palliative and supportive care needs over the course of the disease to inform future service interventions and delivery, focusing on facilitating early intervention.
If a prudent healthcare approach is to become a reality, models of care and treatment must be research-led. Research must include the patient’s experience and it must be enabled to feed through into policy and practice. Clear strategy in deciding on research priorities is also vital to ensure that limited resources (funding for cancer-related palliative and end of life care research is less than 1% of the total spent on cancer research in the UK[xxvii]) are directed towards the most beneficial outcomes. Initiatives such as the James Lind Alliance’s Palliative and Care Priority Setting Partnership, which has identified patients’, carers’ and professionals’ top unanswered questions relating to palliative and end-of-life care should be heeded so funds and efforts can be targeted most effectively[xxviii].
Improving care and the quality of life of people who are approaching the end of their lives is possible within the framework of prudent healthcare. There are many examples of end-of-life care in Wales, which embrace the principles of prudent healthcare but there is still much to be done. In many cases the examples in this article involve doing something extra – extra training for more professionals; extra support for communities; extra funding for targeted research. Clearly, a prudent approach is not about rationing.
By embracing prudent healthcare principles now, we will be in a much better position to meet the very real challenges of providing high-quality, person-centred and equitable care at the end of life.
What will make prudent healthcare a reality for people approaching the end of their lives?
- Advance care planning: All relevant health and social care professionals, including care home workers, should be trained and supported to help people think about their care and develop advanced care plans. This process will empower people to make important decisions about their care and how they want to live as they approach the end of their lives.
- Education and training about palliative care: More information should be available to help health and social care professionals and the public understand what palliative care is; when it can help and what the benefits are. This should include identifying where palliative care is appropriate alongside other forms of care.
- Supporting families and communities: Investing in community care and in communities so they can better support people who are approaching the end of their lives will enable more sustainable models of care to develop.
- Improving access to palliative care: Older people and people with certain conditions are less likely to receive palliative care, yet this care can improve quality of life and reduce unplanned, emergency hospital admissions. General care providers must know how to access support and advice from specialist palliative care teams. This, coupled with education and training, should ensure much better access regardless of personal circumstances.
- Targeting research and data: Effective and efficient planning and delivery of care in the future will depend on having robust evidence. This must include both national-level data, which identifies levels of need for palliative and end-of-life care, and research which looks at people’s experiences of the care they receive.
[i] Palliative Care Planning Group Wales. Report to the Minister for Health and Social Services. 2008.
[ii] Palliative Care Cymru Implementation Board. Dying Well Matters – One Wales: 3 years on (2008-2011). 2011.
[iii] Welsh Government. Together for Health – End of Life Care Delivery Plan: Annual Report 2014. 2014.
[iv] Marie Curie. Death and dying in Wales. 2014.
[v] Clark D, Armstrong M, Allan A, Graham F, Carnon A, Isles C. Imminence of death among hospital inpatients: Prevalence cohort study. Palliative Medicine 2014: 28 (6) pp. 474-479.
[vi] ONS. 2012-based national population projections. 2013. http://www.ons.gov.uk/ons/rel/npp/national-population-projections/2012-based-projections/rft-table-a1-5-principal-projection—wales-summary.xls [accessed 25 Feb 2015]
[vii] Stats Wales. 2012-based national population projections for Wales, 2012-2037. https://statswales.wales.gov.uk/Catalogue/Population-and-Migration/Population/Projections/National/2012-Based/PopulationProjections-by-Year-Gender [accessed 25 Feb 2015]
[viii] Welsh Government. National Dementia Vision for Wales. 2011.
[ix] ONS. Statistical bulletin: Deaths Registered in England and Wales (Series DR), 2013. 2014.
[x] Marie Curie and Alzheimer’s Society. Living and dying with dementia in Wales: Barriers to Care. 2014.
[xi] Gawande A. Being Mortal: Medicine and What Matters in the End. India: Penguin Hamish Hamilton. 2014: 177.
[xii] Ketering K, Hancock A, Reade M, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised control trial. British Medical Journal 2010; 340: c1345.
[xiii] Welsh Government. Together for Health – End of Life Care Delivery Plan: Annual Report 2014. 2014.
[xiv] Gawande A. Being Mortal: Medicine and What Matters in the End. India: Penguin Hamish Hamilton. 2014: 178-180.
[xv] Temel J, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. New Eng J Med 2010;363:733-42.
[xvii] Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaolki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliative Medicine2014: 28 (1) pp. 49-58.
[xviii] Welsh Government. Together for Health – End of Life Care Delivery Plan: Annual Report 2014. 2014, p. 11.
[xix] Marie Curie. Death and dying in Wales. 2014.
[xx] Watts T. Final year nursing undergraduates’ understandings of palliative care: A qualitative study in Wales, UK. International Journal of Palliative Nursing 2014, DOI: http://dx.doi.org/10.12968/ijpn.2014.20.6.285.
[xxi] Chitnis X, Georghiou T, Steventon A, Bardsley M. The impact of the Marie Curie Nursing Service on place of death and hospital use at the end of life. Nuffield Trust, 2012.
[xxii] Georghiou T, Bardsley M. Exploring the cost of care at the end of life. Nuffield Trust, 2014.
[xxiii] Marie Curie. Death and dying in Wales. 2014.
[xxiv] See Marie Curie and Community Housing Cymru. Dying at home: The role of social housing providers in supporting terminally ill people in Wales. 2014.
[xxv] Kellehear A. Compassionate Cities: Public health and end-of-life care. Oxford: Routledge. 2005.
[xxvi] D. Horsfall, R. Leonard, K. Noonan and Cancer Council NSW. Bringing Our Dying Home: Creating community at end of life. 2012.
[xxvii] James Lind Alliance. Palliative and end of life care Priority Setting Partnership (PeolcPSP). 2015.