Social work and end-of-life care

Social work is important in end-of-life care

Archive for July 2012

People don’t want impersonal care and extended sickness leading to death: policy debate

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An interesting American article on how end-of-life care has developed in response to our experiences of death. Here are some aspects of that experience that the article talks about.

[In the 1960s,]…[c]omplaints arose about a lack of choice on the part of patients, doctors indifferent to the pain and suffering of those in their care, and cold, impersonal deaths lacking all dignity in a cocoon of tubes and wires.

[But still]…doctors, patients, and families drag their feet in acknowledging that death is on the way, and that is an important reason why so many of us personally know of, or have heard about, some miserable deaths where the dying went needlessly on.

[A] better coordination of care is needed: the elimination of fee-for-service medicine, which rewards physicians for their use of medical technologies but not for talking with patients; efforts to help patients die at home rather than in hospitals (and the development of more low-cost technologies to make that possible)…

The idea of unlimited medical progress that admits of no upper boundaries is not turning out as hoped. We have not found, nor are we anywhere near finding, cures for the major killer diseases. What “progress” has given us is an enhanced ability to keep sick people alive at a high cost financially and a no less high cost in terms of pain and suffering at the end of life.

And the conclusion:

We have traded off earlier, quicker deaths for later, drawn-out deaths. That bargain needs to be reconsidered.

This is an interesting critique of the impersonality of some heroic medicine, and the need for low-tech, human caring. It comes round again to some of the concerns that have led to campaigns for assisted dying. The main point is that people do not want extended sickness leading up to their death. It is not that they want help to commit suicide: it is more that people want thoughtful healthcare decisions that recognise when death is approaching and allows it to happen naturally.

Link to the article: Ethics and Healthcare

Citation: Callahan, D. and Lawler, PO. A. (2012) Ethics and Health Care: Rethinking End-of-Life Care. Discussion Paper 4, Center for Policy Innovation. Washington DC: Heritage Foundation of America.

(This is an American conservative think tank).

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Written by Malcolm Payne

31 July 2012 at 3:43 pm

Easel memorial: the embroidery of your memories

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Another in my series of pics from a cemetary in Bratislava, Slovakia. Here is a metal memorial, in the form, perhaps, of an artist’s easel: a picture of the embroidery your memories, in view of its ornate frame.

Written by Malcolm Payne

31 July 2012 at 10:12 am

Posted in memorials, pictures

SWSCMedia debate on palliative and end-of-life care next Tuesday; pictures of memorials

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I am taking part in an Internet Debate organised by SWSCMedia on social work and end-of-life care next Tuesday evening. I did not know what to expect, but it seems you can read a starting-off article on the topic on their website, called ‘Social work and end-of-life care: issues for debate’. At the time, you get loads of Tweets on the topic, and can contribute. I hope you join us.

Here is the link to the initial article: SWSCMedia article on Social Work and End-of-Life Care by Malcolm Payne

I’m planning to include pics from time to time in this blog, when I can find stuff about end-0f-life. I’m starting off with pics of memorials from different places. Over this week: pics from a cemetary in central Bratislava, Slovakia. Number 1 today: View through a porthole in the outer wall: looking in on people we want to remember.

Written by Malcolm Payne

30 July 2012 at 10:52 am

Should prisoners get better end-of-life care than non-offenders? But many people get poor care.

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Report of an ethical committwe debate

Should prisoners get better care at the end of life than non-offenders, who cannot afford to have the care they want?

That is one of the ethical issues that palliative care professionals working in prisons face. Among the answers is the classic statement that that people are sentenced to prison as punishment not for punishment. In other words the loss of freedom is the punishment, not unreasonable conditions of life. The ethical argument is they should not get worse care than it is possible to give, because that makes the punishment harsher than intended.

If that is true, the logical ethical argument is that social and healthcare should be the best possible for everyone. Is there anyone arguing for that? Or are we only getting the quality of care at the end-of-life that we can afford to pay for, or if we are lucky in the public services in our area?

Link to the Christian ethical website that raises this issue.

Written by Malcolm Payne

26 July 2012 at 12:23 pm

Raise awareness of end-of-life planning among minority ethnic groups

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News item about Deborah Carr’s research from Rutgers University

An account of another piece of American research which shows that people from minority ethnic groups do less planning for care at the end of their lives than most. Part of the reason for this is that they have bad experiences of the medical profession, so they are cautious about getting involved. However, the author, Deborah Carr. makes an important point that is relevant to people from all minority ethnic groups that social workers deal with:

“Lawyers will say, ‘why don’t we do a living will and durable power of attorney? [lasting power of attorney in the UK]’’’ says Carr. “But people who draft wills are normally people who own homes and have assets to protect.’’ That’s less likely to be the case for poorer people and minorities, she said.

Carr believes it’s critical to raise awareness about end of life planning [especially among minority ethnic groups].

I wonder if we’re even thinking about that in the everyday practice or community work that social work practitioners are doing in the UK.

Report of a study of American minority ethnic groups

Written by Malcolm Payne

25 July 2012 at 12:06 pm

Quick practical guidance for social workers on talking about dying needed

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The ‘New Route to Success’ guidance on social work in end-of-life care

The National End-of-Life Care Programme has published its guidance on social work in end-of-life care, featuring some very glossy-looking social workers; perhaps the co-sponsor, the College of Social Work, is trying to improve the image that way too.

It’s very comprehensive and a good text for students and for any of the post-qualifying courses that happen to include something on end-of-life care. As all of them should, but few of them will, because many adult social care departments will think that this is all too difficult and time-consuming for their form-fillers.

I fancy that for people who are working for such departments, it will be too detailed a guide to picked up and used in a work setting, more’s the pity because I think everyone in adult social care should be developing and using skills in end of life care. One of the problems is that it follows the National EOL Care Programme’s ‘six steps’, which takes you through the whole process of working with someone at the end of life, whereas some quick practical guidance on how to talk over issues about dying and ways of dealing with the obvious questions that people ask might be more helpful.

Link to the Guidance – you can download it from the Internet.

There is lots of other guidance from the Route to Success scheme, including sheltered housing, prisons, homeless people and many others; get them and other National End-of-Life Care Programme documents by clicking here.

Written by Malcolm Payne

24 July 2012 at 4:42 pm

Posted in End-of-life care

Help people plan for their time of dying and support community and family care

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Michael Wolff wrote about the illness and death of his mother in The Observer yesterday; the article has already appeared in a longer form in New York Magazine.

The article covers a lot of ground, but it provides some useful pointers for others in the same position. However, it is based on American law and practice and does not fully apply to the situation in the UK. In particular,the assumptions about hospices passingly mentioned in the article do not reflect the position in the UK, where hospices are less long-term care institutions for people at the end-of-life, but shorter-term specialist provision.

The points made are:

  • Once an older person starts to have serious episodes of ill-health, it’s important to think about what the future will hold and plan for a continuing deterioration in their condition.
  • Once someone has severe dementia and has lost their ‘mental capacity’, doctors and other healthcare professionals will be obliged by their ethics to continue treating people when they fall ill. They will thus be keeping them alive even though the older person’s quality of life is not good. Unless you have what in the UK are called ‘lasting powers of attorney’ for making decisions on health and welfare matters, it will be hard for relatives to challenge the professionals’ decisions.
  • Constant admissions to hospital are damaging but because healthcare professionals in the community do not want to have to cope with the responsibility of caring for people with very changeable conditions. or do not have the resources to do so, it is often what happens. Try to avoid it by employing, as this family did, a live-in carer around which family members can contribute what support and involvement they are able to offer.

The lessons for service development are that we to help people plan as soon as possible in someone care career. We also need to train and support community and care home staff to avoid hospital admissions and we need to get much better at supporting people in their homes or in a suitable local setting, without  imposing too much of a burden on their families.

Link to the Observer article.

Written by Malcolm Payne

23 July 2012 at 3:11 pm

Posted in End-of-life care