Last reviewed 30 June 2016

Jef Smith discusses some recent reports examining end-of-life care and how it can be improved for service users of residential care.

It would be a step too far to say that death has become fashionable, but to talk about dying has certainly become much more acceptable than it was a generation ago. Health and social care have been ahead of the curve in this respect, because of course people who are elderly and sick — or, as frequently happens, elderly and sick — are at a relatively high risk of dying. Even here, however, there is some reluctance to face up to the issues service which users encounter, so we would be wise as a first step to examine our attitudes to having to face the end-of-life at some stage.

Given their age profile, many domiciliary care workers will have memories, life stories, fears, faith or lack of it, and personal relationships which map or mask their feelings about death, and to be at least aware of these are a prerequisite to helping others to cope. Drawing on one’s own beliefs and experiences may be helpful, but it can equally be an obstruction to providing sympathetic and unbiased care.

Recent reports

A recent publication from Public Health England illustrates some of the pitfalls. Intended as A Resource for Professionals, Providers and Commissioners Working in Communities, producing its 28 pages involved no less than 14 listed authors, but its profiles of six major religions are so simplistic as to be likely to be a source of more offence than insight. Religious beliefs and practice are so personal, varied and difficult for outsiders to understand that the best advice for care practitioners is that service users’ care plans should record both the person’s religious affiliation, if they have one, and the organisation to turn to if help is required when death approaches. Amateur interventions, however well meant, are highly likely to get it wrong. It should hardly need saying that for care staff to attempt to use their own beliefs to comfort or influence clients should be a disciplinary offence.

More helpfully, a consortium of governmental, professional and voluntary organisations — including significantly the Care Quality Commission — published in 2015, its Ambitions for Palliative and End of Life Care, billed as a “national framework for local action”. The document focuses on six central objectives, which it calls “ambitions” for better practice. For each ambition, it lists existing knowledge, followed by the building blocks required for further progress to be made. The six ambitions are for individualisation of care, fair access, maximised comfort and wellbeing, co-ordination of services, sound staff preparation, and community involvement.

The first conclusion to be drawn from this list is that each of the Ambitions could apply equally to the quality of care generally. The section on what is already known about seeing people as individuals, for example, includes the statements that “Having our personal needs and wishes ignored or overridden is a deeply rooted fear”, that “people want to be involved in their care, and should be given all the information, advice and support they need to make decisions about it”, and that leaders and care professionals should be “innovative in how to enable choices to be met, particularly within resource constraints”.

The document urges the importance of checking with the dying person plans for their comfort and the management of their symptoms. It recognises that distress takes many forms and that physical suffering can be exacerbated or even caused by emotional, psychological, social or spiritual factors. Domiciliary care agencies have only limited powers in such situations, as their workers are effectively visitors in an environment still controlled by the service user or their family. Nevertheless, they can play an important part in helping to give carers confidence in their ability and stepping in when that confidence or the necessary skill are not there.

The aspiration that everyone approaching the end-of-life should have access to “Specialist Palliative Care” is admirable but very far from being realised at present. Those professionally involved in providing medical care for dying people insist that methods of pain control are now sufficiently advanced for pain not be an issue. This claim, however, does not altogether accord with actual experience, even of people dying in hospital where expertly supervised medication is much more readily available than it is for people living in their own homes.

The document then introduces a concept new to me, rehabilitative palliative care, by which is meant maximising a person’s desired independence and social participation while acknowledging death’s inevitability. This certainly throws a fresh light on the idea of rehabilitation, but again such ideal practice feels very remote from what is often happening on the ground. Domiciliary care workers may be in a position to help their clients achieve their personal goals in the last period of their lives, but this can be costly, which to be honest often more or less rules it out. Imagine, for example, that a service user living a hundred miles from the coast longs for a last glimpse of the sea …

Help for community-based care

It is a sign of end-of-life care’s growing acceptance that reports have positively proliferated over the last year. Another consortium, this time of seven not-for-profit bodies, published a document in February 2015 called an Independent Review of Choice at the End of Life. Exactly a year later, the group returned to the theme with a further report called On the Brink: The Future of End of Life Care. Both reports, sadly, are strong on examples of poor to non-existent care for people in their own homes, and the more recent one highlights the fact that some people at the end-of-life are unable to get access to help with everyday tasks such as getting up, washing and getting dressed. This is hardly news to anyone working in domiciliary care. Nor indeed is the fact that many families get little or no professional advice on how to care for a dying relative.

The authors point out, also not very originally, that lack of community-based services can result in people being admitted to hospital as emergency cases. It is rather more of a revelation that people who die in hospital spend an average of 13 days there, a distinctly unlucky fate, given that most of us would prefer not to be in hospital at all when we die. Shifting such care out of hospital would be both popular and cost effective, but the report’s warning that “the right support needs to be in place at home … to enable this to happen” is no more than a statement of the obvious.

Still many questions

After reading many thousands of words printed about end-of-life care over the last year, I am left with three questions relating to social care for those expert authors. First, is the influence of the hospice movement, which was strongly represented among the authors of each of the reports, altogether positive? There is no doubt that hospices provide superlative care, but it is for a small and highly privileged minority. If care for the dying is so important, why do we contract out this elite service to the non-statutory sector, leaving the poor old NHS to cope with the rest? Most hospices are Christian foundations; is this helpful for those of us who have another faith or no faith at all?

Hospices also provoke my second questions, which is again not original: why does cancer get so much attention in the research, care and treatment relating to dying? Other serious but less fashionable conditions, including of course dementia, continue to suffer from this long-standing discrimination. Why is this unfair and long recognised disparity allowed to continue?

Last, why is so little attention in the literature of dying paid to the front line workers in residential and domiciliary care who carry so much of the burden of coping with death? I am still waiting for a report on end-of-life which highlights the fact that care staff, to whose heavy responsibilities everyone pays lip service, are underpaid, in many cases are more or less untrained, and are often poorly supervised? The hundreds of thousands of people who will die while being cared for by such dedicated workers over the coming years demand answers.