The lure of dying at home: an impossible dream for the oldest old?

 

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

Professor Sheila Payne

Professor Sheila Payne

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.

Reality
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).

Reference
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).

Acknowledgement
This post was first published on the website of Age UK and is reproduced with kind permission.

To find out more…

  • This post is part of a programme of work about the ‘oldest old’ that is delivered by the UK charity, Age UK, Visit Age UK’s website for more information and resources.
  • Click here to read about other EAPC initiatives related to older people and good quality dying.
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12 Responses to The lure of dying at home: an impossible dream for the oldest old?

  1. Esther Schmidlin, nurse, Switzerland says:

    Interesting post, good questions asked!
    In Switzerland, despite the national palliative care strategy, which aims to develop palliative care in all settings of care, dying at home is also too often not possible. This is especially true for the very old people living at home, but also for younger adults. Living alone, the lack of nursing care services at night, the lack of informal carers and volunteers, the lack of legislation and financing which allow a person to take paid leave of absence to look after their dying family member, the extra expenses for the care at home; these are just some of the barriers. As a nurse in a mobile palliative care team, I also observe a lot of anxiety from informal and formal carers – they often declare their limits of how far they can go with “taking on the responsibility for a dying patient”. Despite the 24/24 hours availability of our mobile palliative care team, family or general health care professionals often opt for a “save” institutional environment when the person becomes frail or approaches death. I understand the exhaustion and the anxiety of the informal carers, and I understand the limits of the home care services which are under budget restrictions. But it pains me that for many carers dying at home is just not imaginable anymore – there is a feeling best care is given in a inpatient facility – in reality this is not necessarily true. My main concerns are, however, that funds are so unequally distributed – there is expensive, unlimited “state of the art medicine” to prolong life on one side, and there is not enough funding and support to enable care at home, with all the education and support that informal and formal carers would need. I look forward to read more about this research and possible ways to support quality care at home until the final hours!

  2. Thank you Professor Sheila Payne and Esther for a clear view of the issues.
    I am a retired nurse and since the death of my son (following an accident) I have now trained as a Soul Midwife. We have forgotten so much about the dignity of dying and so often as a theatre nurse I witnessed the denial of impending death of a patient and death appeared to be a medical failure in an acute hospital setting.
    I agree wholeheartedly with Ester about the issue ‘ there is expensive, unlimited “state of the art medicine” to prolong life on one side, and there is not enough funding and support to enable care at home, with all the education and support that informal and formal carers would need.’
    I see my role developing as an educator and supporter of health care workers and to do my part of bringing dignity and grace to the dying.
    Jennifer Worth wrote so well about death in the hospital setting in her book ‘In the Midst of Life’

    • Hi Helen, I agree so much and I think that `In the Midst of Life` should be a book that every nurse/healthcare professional should read. It was heartening to read and reaffirmed everything we strive for in caring for someone at the end of their life.

  3. Irene Murphy says:

    This is an interesting discussion. In the palliative care service I work in, in Ireland, new referrals are often for people who have been struggling with health problems for many years. This is particularly true for elderly people with non-malignant disease. Carers (family and/or friends) have often been caring for many years and the referral to palliative care often coincides with, or is triggered by, a realisation by carers that they have come to ‘the end of the read’ in terms of what they can provide at home.
    Philosophical debates about place of death or about what constitutes a ‘good death’ can be useful but a bit disconnected from the ‘on the ground’ reality of reduced resources and care giver burden. But equally, death in a hospice can also be romanticized – death is often a lot less serene than one might think. Death can be like life – a bit messy and ackward – some people die as they lived – ‘at odds with the world’. There is no ‘one size fits all’ either in terms of care at home, a nursing home or hospice.

    • I am so please that I found this discussion! I agree with everything that you have said, Irene. I believe that we need more education about the death process. It seems to me that death has become a taboo subject in my experience in starting conversations about death. People seem to find it relatively easy to talk about bereavement counselling, but naturally there can denial around death.
      My son died in intensive care after an accident and donated his organs. 6 people have so far benefited from his death and for this I give thanks. His death in ITU was dignified and graceful and beautiful if I may use these words. As you say there is no one size fits all and death as life can be messy as with my friend when her brother took 8 painful days to pass in a hospice.

      • Hello Helen, yes, death is the biggest elephant ever, even in my line of work in palliative care. I often find that patients or their loved ones have not had “the conversation” with Consultant, g.p. etc. and we have little time to bring them a lot further along on their journey. So sorry to hear about your son, what a testimony to help six other people which must be a great comfort to you. Thank you for sharing with us.

  4. Brian McAteer says:

    I have just looked after my wife until the end at home I can not express how much it helped my wife through the last few day knowing that she was at home, also I feel it has helped me through the last few months knowing I was able to look after until the end. My wife was 55 at the end.

    • Thank you for sharing and I am sorry for the loss of your wife.

    • Hello Brian, my condolences for your loss but so lovely to read that she passed away at home where she wanted to be. I always feel that it is a beautiful gift to give someone when you agree to care for them at home and a testimony to you as the reality can be somewhat different to how you think it might be, on all levels. Thank you Brian for posting.

  5. Jennifer says:

    My grandmother recently passed away and one of the most difficult parts of the entire experience was watching how uncomfortable she was in the hospice. Of course, the medical professionals were only trying to make her more comfortable but being away from home accelerated her sickness and really upset my grandfather. I think there should be progress made in regards to caring for the elderly in their own homes. Hospitals are horribly noisy and filled with anxiety, there needs to be more peaceful alternatives.

    • Helen Grace says:

      Hello Jenifer, thanks for sharing. I believe that the more we share stories and the more we understand death and reduce it’s fear the more grace will come with death. To this end I have now trained as a Soul Midwife with Felicity Warner in UK who is promoting the gentle art of dying. Helen

  6. Pretty! This has been an extremely wonderful post.
    Many thanks for supplying this information.

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