A long way from home: the challenge of end of life care

Professor Sheila Payne’s recent Knowledge Hub article lays out some of the challenges of achieving a good death for older people (The lure of dying at home: an impossible dream for the oldest old?). In particular, Professor Payne highlights how the aspiration of helping more people die at home is not a straight-forward one.

What the aspiration itself tells us about how people want to die is perhaps more interesting than the specifics of location.

In the first instance, a failure to die at home can indicate poor planning and a lack of appropriate services when people most need them. It is a frequent story to hear of someone’s condition change in the middle of the night and for family or carers to have no support or preparation to deal with a moment of crisis.

The outcome is often an ambulance ride to hospital only to die on a ward.

Older people will often have to deal with pain and have multiple support needs in the last weeks and months of life. These could well be dealt with at home yet the resources and appropriate professionals are not put in place or the GP is not always confident to provide the right support.

Again, the aim is simply to be comfortable and assisted when needed yet people are not able to expect this outside of a formal care setting.

It is for these reasons that many people see dying at home as a proxy for indicating better quality end of life care. Partly on this basis, the previous Government had aimed to set a target for increasing the number of home deaths.

In opposition, the current Secretary of State for Health, Andrew Lansley MP, rejected this notion, in part simply a rejection of targets. The approach the Coalition Government have taken is to propose a tariff for end of life care that would enable people to exercise more choice over how they are cared for at the end of life.

Following a review, the Department of Health has this week opened applications for piloting a new approach to palliative care funding. What the review had grappled with is how to fully support people at the end of life when a large proportion of care comes from social care and, where available, the voluntary sector in the form of hospices and home care support.

Professor Payne highlights this challenge when she dispels the notion that everyone has a comfortable house and loving family to look after them. Simply providing more health care will never be enough to help people have a good death.

However, exploring preferences with individuals and making a realistic assessment of need that takes in all aspects of a person’s life will help to improve their experience of care, regardless of their circumstances. Central to this also means substantially improving the care available to people in care homes.

Truly person-centred care must be the guiding principle not assumptions about what people want or what social resources they have available to them.

This is something the new Health and Wellbeing Boards (HWB) the Clinical Commissioning Groups (CCG), proposed in the Health and Social Care Bill, will need to grapple with. So far, the priority, for the former in particular, has been on improving public health, naturally a vital area of focus.

However, they must not forget their obligations to people at the end of life nor the distance that needs to be travelled to improve outcomes for older people more generally.

Joint health and wellbeing strategies, which the HWBs and CCGs will need to co-produce must include provisions for end of life care. Importantly, they must cover the breadth of services and potential interventions including, for example, housing and benefits support as well as health and social care.

Help the Aged, one of Age UK’s legacy organisations, commissioned research to explore what older people want at the end of life. One participant neatly sums up many of these issues:

“In the end, I asked to take him home. But I had to battle and involve the social worker. Many people want to come home [at the end of their lives].They do better. But I had to battle. Why is it so hard?”

Read Professor Sheila Payne’s guest article

Find out information related to older people in our Knowledge Hub

Author: Tom Gentry

Policy adviser - health services @tomogentry

3 thoughts on “A long way from home: the challenge of end of life care”

  1. really interesting article. i agree that one of the key issues is to make sure that ‘person-centred care’ is a priority at care homes. at our homes, we make sure that daily assessments of each client are made, focussing on anything from mood changes to alterations in food tastes or activity enjoyment. That said, as ‘heimische’ (homely) as we make the jewish care homes, you have to appreciate the wish for some people to end their life in their homes.

  2. Person-centred care is empty rhetoric while we are not allowed the means of ending life as we would like – elegantly, with dignity and still in our right minds. How many really look forward to prolonging life as a burden to oneself and to others? I do not want a medic or a social worker to determine how and when my life ends – that decision should be mine and mine alone and made, not when I am a drooling idiot, but when I am happy, fit and well, but think that life is no longer worth living. I want to be the one to summon the undertaker and I want a reliable, quick and painless mode of exit that I can administer for myself when I and I alone, want to.

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