Death and dying: improving end of life care

Categories: Care.

The ‘Death and dying: understanding the data’ report from Marie Curie Cancer Care argues that we need to rebalance end of life care and shift resources away from hospitals to other health and social care settings. Social care providers have an important part to play in making this vision a reality.

About half a million people in the UK die each year, and the quality of care they receive also affects a much larger number of relatives, carers and friends. Yet, until now, we have not had an informed picture of the experiences of people at the end of their lives. ‘Death and dying’ uses data (largely published elsewhere) to give us an informed and nuanced picture of end of life care in England. It explores differences between people’s experiences, spending on end of life care, recognition of palliative care and patterns of care across different parts of England, and across different services. Much of the data used in the report is available via the Marie Curie End of Life Care Atlas. The atlas has been developed to help commissioners, parliamentarians and others to see how their local areas and services compare.

The report shows that many of the people who die in hospital have no medical need to be there, do not want to be there and ultimately experience poorer care if they end up there.

The reality is that often people are not able to exercise real choice when deciding where they wish to die. The VOICES Survey of Bereaved People revealed that only a minority of people who are terminally ill are given the opportunity to express their preferences for care at the end of life (only 44% of respondents said their loved one had expressed a preference for where they wanted to die). The first, simple step towards improving choice is to ask people what they want. This then gives us the first piece in the jigsaw that is care planning. The onus here will be on GPs and other professionals to initiate such conversations and to ensure proper Advance Care Planning.

The VOICES Survey shows that hospitals score lowest across almost all measures. Whether it is in terms of perceptions of quality of care or dignity and respect afforded to their loved ones, bereaved people ranked hospitals lower than hospices, care homes and the care provided in people’s own homes. Moreover, recent findings from a ComRes survey, conducted on behalf of Marie Curie, show that more than half of people in the UK said that they doubted the NHS would provide high quality care to someone who is terminally ill. The simple conclusion is that hospitals are not the best places for the majority of people to die. 

‘Death and dying’ argues that we need to shift the focus away from hospitals and ensure that resources reach other community-based services. This does not mean wholesale hospital ward closures, but rather a well-planned shift of resources. However, in order to undertake such a shift we need to improve aspects of care in all settings. This will require us to focus on a number of key areas.

Pain management in the home

First, we must improve pain management at home. As the VOICES Survey shows, pain management at home is poorest of any setting. We need to work with GPs and other professionals to improve training and at-home prescribing, which means that those who want to die at home can do so in the knowledge that they will be comfortable and pain-free.

Free social care

Second, we need to break with the current false distinction between health and social care with a current divide between free NHS care and the means tested social care, which creates a disincentive to get people out of hospitals.

This is especially apparent at end of life where terminally ill people who wish to be cared for at home struggle to get access to the social care services that would enable them to do so.

We are campaigning with Help the Hospices, Macmillan Cancer Support, MNDA, NCPC, and Sue Ryder for social care to be free for people who are terminally ill.

The process people currently have to go through to get the social care they need is overly burdensome and is carried out separately from the health service. Yet at no point is seamless care more important than at the end of life. Removal of the social care means-test for those on an end of life care register would be a significant step towards realising the vision of a more integrated health and social care system.

Analysis by Marie Curie Cancer Care shows that if free social care for those currently on an end of life care locality register were to be introduced, the initial cost to the state would be £32.2 million. This is balanced by potential savings in hospital-related costs. If community services, including social care, were developed to enable just 30,000 patients to reduce their stay in hospital by only four days, the NHS could save up to £34 million. Moving terminally ill people from acute services to social care settings, therefore, is not only supporting the wish of the majority of terminally ill people to die in the setting of their choice, but also makes strong financial sense.

Care homes

Third, the one aspect of the report that may surprise some, particularly those who are avid media consumers, is that residential care homes score significantly better results than hospitals for measures such as quality of care, dignity and respect and pain management. This is particularly important because it is clear that if we are to ensure that fewer people die in hospital, then care homes will have a major role to play in making this ambition a reality. We need to ensure that we transfer good practice from the best care homes to all others, to ensure that people have the best quality care.

Coordination of care

Finally, we need to ensure that we coordinate care so that people have the right care packages which means they do not unnecessarily end up in hospital, or find themselves stranded in a hospital bed because of the failure of the wider system to put together appropriate care packages. Nuffield Trust’s report on health and social care at the end of life found that those people who had appropriate care packages used accident and emergency services and in-hospital services less. Through our Delivering Choice Programme we know that integrated care in end of life services works. Not only does it improve the quality of care the patient receives but it increases the productivity of the healthcare system.

We now have the evidence base required to make major changes to the way in which we deliver end of life care services. The task is one for all those who deliver services to people in the last weeks and months of life. The bottom line is that we need to improve aspects of care in all health and social care settings.

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