Policy Project: A Place for Everyone (2019 - 2021)
Marie Curie believes that everyone deserves the best possible experience at the end of their lives. Place – where someone is cared for at the end of their life, where they die and whether this matches their preferences - is an important part of this experience.
Over the next two years we are going to be looking in detail at the role place plays in people’s experiences. We will also look at the challenges we face in delivering the best care whilst at the same time meeting people’s preferences for where they receive that care and ultimately where they die.
Population ageing presents a huge challenge for future end of life carei. Deaths are projected to increase across the UK; by 2040 it is estimated that there will be 160,000 more people dying in England and Wales, 9,029 more people dying in Scotland and 3,830 more people dying in Northern Ireland. Coupled with the trends in life expectancy the increasingly complex care needs of people with multiple health conditions towards the end of life mean that the number of people dying with a need for palliative care is projected to increase by up to 42%.
It is inevitable that services will have to change, to cope with complexity and numbers if there is going to be any chance of meaningful choice at the end of life. The service environment will need to be different in many ways; where, what, when and how.
Some of the biggest service challenges we face will be focussed around informing and supporting people’s choices on their place of care at the end of their lives and their place of death.
For many years end of life care policy across the UK has focused on enabling people to die at home. Repeated surveys have told us that home is the preferred place of death. Yet numbers of people dying in hospital remain around 50% of all deaths across the UK. The increasing numbers of people dying and the increase in complex needs over the next 20 years will mean that the ability to support people dying in their own homes is going to become increasingly challenging.
The prioritisation of home and it being considered a proxy for ‘the achievement of a good death’ without more detailed thinking about how the complex clinical needs and social circumstances of many older people approaching end of life can be met will inevitably lead to less choice and poorer experienceii.
Focussing on place in the context of future quantity and complexity of need has enormous implications for how end of life care services, coupled with social care, are designed, funded, and delivered. This includes the roles of hospital services, care homes, primary and community care providers. It will also have an impact on volunteers and family members as carers.
Such a focus brings into play many other things outside the scope of health and social care such as private and social housing, employment policies and financial security.
This is a here and now issue and we must take steps to address the challenges that we face now and more and more into the future if people are to have choice and quality of experience at the end of their lives now and in the future.
"Dying at home is often used as a simple proxy to indicate someone has had a good end of life experience. This masks a more complex reality. For some, being cared for and dying at home is either not an option or not their choice. And the changes we are facing as a nation mean that we need a more sophisticated understanding about what makes a good end of life experience. Only by doing this and matching care and support in all its forms to this understanding will we be able to meet diverse need and choice.
"Our work looking at place – what it means to people and what it means for priorities, policies, resources, planning and delivery across health, social care and more – will help to shape future thinking and delivery which, in turn will mean a better experience at the end of life for many more people."
- Matthew Reed, Chief Executive, Marie Curie
Marie Curie will explore what impact place has on end of life care experience through a series of reports including looking at personal preferences for place of death and what influences and informs these.
We will explore what ‘home’ means to people from a diversity of backgrounds, including individuals for whom home might not be an appropriate place for death to occur or even an option. It is essential that we recognise the impact that individual circumstances have on experience at the end of life in the context of place.
We will review government policies that have been designed and developed in attempts to deliver choice in place of death and assess the trends in where people are dying and projections for the future, so that we may make recommendations for how policy and service delivery must adapt to meet the current and future challenges.
We have commissioned research led by Professor Kristian Pollock at Nottingham University. The Exploring Death and Dying in the UK study will carry out in-depth discussions with patients, bereaved family care givers and the general public around their experiences and expectations of death and dying in different settings in the UK. The research findings will inform recommendations for future end of life care policy and delivery. For more information, or to be involved in the Nottingham University research please visit their website .
“The UK population is becoming older. Most people die in great old age, often after a period when they are affected by one or more chronic conditions, such as diabetes, cancer or heart failure. Current care for patients approaching the end of life has not caught up with this changing population profile. Services and resource prioritisation continue to be driven by an assumption that home is the best and preferred place to die for the majority of the population.
In reality, however, we know very little about what members of the public think about death and dying, their experience of giving and receiving care within their family, or how or where they themselves would wish to be cared for in future.
Through discussions with patients, family caregivers and members of the public, the research will explore what people think about death and dying. We want to find out if people regard these as ‘taboo’ subjects or whether it helps to talk and plan for future care, what concerns people most about the prospect of dying, and what people think about balancing quality of life and length of life.
Importantly, we will also explore where people would like to be cared for at the end of their lives, where they would prefer to die,and the reasons for these preferences. The importance attached to place of death compared to other priorities and plans will also be established.
We hope that the knowledge gained from the study will help policy makers and healthcare professionals to develop end of life services which are better tailored to the needs of patients from all sectors of society.”
- Professor Pollock, Nottingham University
Here and now pressures on health and social care are very real and inevitably drive thinking, planning and resourcing of services. It is a fact, however, that failure to think, plan and resource for what we know is going to happen will consign tens of thousands of people to a poor experience at the end of their lives.
This project will be an important part of ensuring the thinking, planning and resourcing that is needed happens.
i Bone et al, What is the impact of population ageing on the future provision of end of life care? Population based projections of place of death. Palliative Medicine2018 – Feb; 32(2): 329-336.
ii Gott, M., J. Seymour, G. Bellamy, D. Clark and S. H. Ahmedzai (2004). "Older people's views about home as a place of care at the end of life." Palliative Medicine 18: 460-467.