Professor Sheila Payne, Director of the International Observatory on End of Life Care, Lancaster University, UK, and President of the European Association for Palliative Care
Current government policy for England and Wales sets out the aim to enable more people to have the choice of dying at home (Department of Health End of Life Care Strategy, 2008).1 While this is a laudable aim, it is based on a number of assumptions about the nature of dying; the availability of care givers; and what constitutes ‘home’, which may be different for people dying in late old age, compared to those dying in younger adulthood.
The purpose of this article is to open up a debate that starts to address what might be considered good quality dying for very old people; by that I mean people who are over 85 years of age.
An ideal death
In previous research, I have asked people what they think a good quality death might be like. People who are facing their own deaths often talked about being pain free, dying with dignity, and dying in their sleep without awareness of their imminent end.
In comparison, doctors and nurses who work in hospices, while they agreed with the importance of good symptom control so that patients are not in pain or distressed, tend to emphasise the importance of preparing for death such as saying goodbye to family and friends, or finishing one’s ‘business’ in the world. This calls for a recognition and realisation that patients are dying. Arguably this is a new social status, which has emerged as more people live longer with advanced disease that will or may ultimately cause their death.
Rather than being completely healthy and then suddenly dead such as after acute illness or accident, most people, especially those in late old age, learn to live with, or are dying from, a number of chronic conditions such as diabetes, dementia, heart failure, chronic respiratory disease and cancer, any of which may cause their death. The pattern of dying therefore is more likely to be prolonged, with bouts of illness, such as acute chest infections, which may mean the spectre of death becomes closer. This makes it very difficult to predict exactly when an older person is dying until very near the end.
It also means that offering to care for an older person at home may well extend over many years, not just days or months.
End of life care
There is lots of evidence that having a person who is able and willing to provide care (usually a family member but sometimes a friend) is essential if a person wishes to die at home. However, in late old age, differential mortality rates for men and women mean that often older women are living alone as their partners have died. Even if the spouse is alive, often they too are living with the challenges of late old age.
Sadly, there is overwhelming evidence that it is harder for older people to access the health and social care services that they need, and this is also true for palliative care and hospice services.
What needs to be done?
Finally, I think policymakers tend to have romantic and very middle class notions of what homes are like, and do not recognise the challenges of living in different types of housing stock, from a bedsit (a single room in a shared house) to a large old house. Older people tend to experience more poverty than others and ‘fuel poverty’ is just one aspect of this.
We know little about how difficult it is to adequately heat a house, to do the laundry when incontinence comes, or provide sufficient food for specific diets, when a family member is dying. We do know that adaptations to the home and special equipment often arrive too late to be of benefit or are resisted because they transform the very essence of the private, non-clinical space that is home.
Home is both a place for social interaction and a repository of memories. We are currently doing a study called ‘Unpacking the home’ funded by Marie Curie Cancer Care, in which we are talking with bereaved older people who have provided care to a person dying in their home, to find out more about their experiences of care and how they feel about their home during the provision of care and afterwards in bereavement.
By listening carefully to their stories, we aim to develop more compassionate and appropriate support for dying older people and their families.
Although this post is written from a UK perspective, I feel sure that the concerns expressed are common to many other countries in Europe. What do you think about good quality dying for very old people? Please comment below or consider submitting a post. (Click here to find information about contributing a post to the EAPC blog).
1. Department of Health. End of Life Care Strategy – promoting high quality care for all adults at the end of life. London: Department of Health, 2008. (The Fourth Annual Report of the End of Life Care Strategy, published in October 2012, is available to download).
This post was first published on the website of Age UK and is reproduced with kind permission.
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