Older Mind Matters

Guest Blog by Dave Jolley: At the end of the day, what is all this about dying and preferred place of death?


We are used to Benjamin Franklin’s truism that one certainty of life is that it will end in death. For most of us death will be delayed until we have lived for 80 years or more. We are, quite rightly, mostly taken up with what we do with our lives, but we are concerned for how and where we and other people will die. The end of life strategy encourages a positive approach to life before death and to making choices for arrangements in anticipation of death. People are asked to think about where they want to die and perhaps to commit the thoughts to writing.

How worthwhile and realistic is all this? There is an assumption that almost everyone wants to die at home. This is not so strongly the case amongst older people - those actually quite near to death. Many at that stage say they might prefer to die in a hospice (see reference) or even in hospital. At least a quarter of all deaths in the UK occur to people with dementia: in the UK 6% of people who die aged 65-69 have dementia, and nearly 60% of those who die at 95 or older (though this is not always recorded on their death certificates, see reference).

Sixty percent of people with dementia are living in a care home or nursing home at the end of their life. This may not have been what they wished for through their first eight decades, but needs must, and Homes offer a practical solution to a need for help 24 hours a day. If recent findings of the Cambridge City Cohort are representative, their chances of dying in a Home rather than experiencing death in hospital is much higher than for people with dementia who cling on to life in their own homes (72% remain in care homes to die, 20% stay at home - see reference). In Holland 90% of people with dementia spend their final weeks and days in a care home (see reference).

Does this mean that the effort and emotion raising expectations that people can realistically expect to die, as they fantasise, in the comfort of their own homes is wasteful at least, and wickedly misleading at worst? Behind the veil of supporting choice, the real agenda is to protect hospital beds from ‘misuse’. The myth is that people with dementia are sent away from care homes to die in hospital. The reality is that people with dementia in care homes will usually see out their lives there.

Only people with very sound support, often including a live-in carer, continue to live at home with dementia into the last weeks of life. The decision to move, or be moved, is taken for all others, and their choice to die at home is given up in advance of the event. For most this is, on balance, a good choice. It takes away many worries and uncertainties for the individual and their family, and is easier for professionals to cope with. Those final months in care can be a positive experience, blessed with feelings of relief.

Those people who stay at home with dementia are a special species, favoured in many ways by personal strengths, reliable care, and the absence of complications. The transfer of such people from home to hospital when they are ill, encounter complications and are about to die, may be a relatively small price to pay for sustaining people at home in keeping with their wishes. General hospitals could adapt to see this as a useful component of their work, and hospices may also find a role here (see report on future needs for hospice care). For some death at home can be achieved (see reference) and should be more widely available through the creation and support of suitably equipped teams combining social, medical, mental health and palliative care skills.

3 comments (Add your own)

1. Jacquetta Holder wrote:
Deaths in care homes are sometimes talked about as indicators of poor care (http://blogs.lse.ac.uk/healthandsocialcare/2013/07/16/measuring-deaths-in-care-homes-five-reasons-why-it-might-not-help-identify-poor-quality-care-homes/). Yet dying in a care home may mean that an older person has avoided a stressful emergency admission to hospital and been cared for where they live, in a care home, which has become their home. For some, care homes may be a preferred place of death. Large numbers of older people live and die in care homes, and most of those living and dying in care homes have dementia. In 2012 the Alzheimer’s Society identified dignified end of life care as an opportunity for research and a major challenge identified by primary carers of people with dementia. Interest and research in the area is growing and the NIHR School for Social Care has published a useful resource for researchers reviewing issues when undertaking end of life care research – but more needs to be done to support the provision of high quality palliative care for older people at the end of life, irrespective of their place of death. An Alzheimer's Society Research network volunteer said they would like to see a Hospice type movement for Alzheimer's and other dementia's - and wouldn't it be wonderful if hospice care could be provided to older people and their families in care home settings.

Thu, March 13, 2014 @ 11:37 AM

2. David Jolley wrote:
At the end of the day:

Jacquetta has moved things on with her thoughtful observations and introduction to the points made by Juliette Malley and Lisa Trigg:
People move to care homes at the end of their lives, using death rates to measure quality will miss and important part of the picture, statistics from small homes are likely to fluctuate wildly, the concept of ‘too many deaths’ is complex and can so easily be misleading, focusing on death rates as evidence of ‘quality’ may lead to perverse incentives to reject or send away people who are most near to death. They point to the alternatives of social care measures of quality developed by the PSSRU and clinical measures used in the USA and other countries. Jacquetta and I found the latter so helpful in our review of the relocation literature.

She moves us to a more mature consideration of the roles and potentials of care homes in the real dynamics of life now that so many of us survive to enjoy years beyond three score and ten, but eventually run out of strength and personal resource to cope independently, often because of dementia. Reviewing the facts, learning from other countries, applying and evaluating better informed regimes; these should displace simplistic calls upon gut feelings which derive from a romanticised view of the world which probably never was and certainly is not now.
We are near enough to this to begin to formulate realistic proposals for service developments linked to funded research.

Ref: Holder J.M and Jolley D (2012) Forced relocation between nursing homes: residents’ health outcomes and potential moderators. Reviews in Clinical Gerontology 22: 301-319

Mon, March 17, 2014 @ 2:26 PM

3. wrote:
Thank you - your blog is timely Dave; and thanks to Jacquetta for her thoughts.

I was recently asked to do some teaching at a Hospice in the Midlands on dementia and end of life, and this followed closely on related events in my own family. So I have been reflecting on this area recently: it raised a number of issues for me.
1. the paradox in living with dementia versus dying with dementia. People given a diagnosis of dementia need to find ways to adjust to living with that knowledge and facing the future. Part of the future will inevitably involve dying, but are they living with dementia or dying with dementia (or both) and what difference does the distinction make?
2. One of the advantages of early diagnosis of dementia is that it gives the person concerned chance to plan for the future. Some people might choose not to plan for the future. Perhaps they are content to rely on relatives to make the right decisions for them. Perhaps they choose to cope with the moment and let the future take care of itself. Who is to say that their approach is wrong?
3. The teaching I gave covered two main areas: end of life care for people with dementia and dealing with bereavement affecting people with dementia. The latter led to a discussion on honesty versus ‘white lies’. I must admit here to a strong bias in favour of honesty, but others talked about feeling that sometimes it is kinder not to be honest. I showed a video of a colleague who herself is living with dementia who tackles just this issue. Her first response on tape is that anyone who lies deliberately to people with dementia is in the wrong job, but as she thinks about it she softens and accepts that sometimes ‘white lies’ might be motivated by compassion. Eventually she confesses that the more she thinks about the issue the more difficult and complex she finds it (I paraphrase of course).

With regard to your central question - home or away, I had recent experience of a close relative dying in hospital, things repeatedly went wrong, and it felt like a battle. I only recently visited the Hospice I referred to earlier and it is an amazing place, would that hospice care were available for people with dementia! But, if home can be a viable option without placing unreasonable expectations on family, it gets my vote every time.

Tue, March 18, 2014 @ 9:23 AM

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