Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘ethics’ Category

Values is more than a collection of words

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140502 global values mapNoel Timms, the eminent social work professor researching values of the previous social work generation used to refer to ‘values talk’ (meaning saying how important your values are as a professional without actually working hard connecting this with the extensive [philosophical analysis). I came across an example of this.

Below is a link to a ‘Global Values Project’, which is quite a naive bit of collecting up random views about human values, based on a vaguely spiritual conception that we all have basic values as part of our human makeup. This is a dubious conception: I think that most people acquire their values from their personal and professional culture; claims that some values are natural, or basic to human life mistakes the importance of history, culture and indeed blind prejudice in creating our values. It is designed to sell you consultancy with an ‘accredited values professional ‘, whatever one of those is and whoever accredits them, to work on your values using some fairly basic pencil and paper exercises.140502 20 selected values

However, the graphic is quite a nice presentation of a lot of words concerned with values, and there is a version (right) that shows selected twenty values words, chosen as the most important by people involved in the project. These might allow you to apply your mind (or your team’s mind) to thinking about your values. Remembering that thoughtful use of values in working, perhaps especially on spiritual issues, means a lot more than just using words.

Link to the Global Values Project.


Written by Malcolm Payne

5 May 2014 at 1:55 pm

A gilded cage is still a cage – Supreme Court deprivation of liberties decision

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A Supreme Court decision on some of the most discussed of Deprivation of Liberties cases is now reported. A legal commentary indicates that these represent major changes in the DOLS law; the legal commentary suggests:

There are likely to be thousands of people who were not considered to be deprived of their liberty yesterday who will be today in light of this judgment.

It recommends that all local authorities and NHS organisations should review their caseloads; they will probably have to issue DOLS documentation in numerous cases where it was not thought necessary.

The judgement by the respected Lady Hale reviews the history of DOLS law in the UK and European Court of Human Rights decisions, some of which took place after previous lower courts in the UK had decided the cases in question here. It’s a very good primer on the existing law, and of course, as always with Lady Hale, very clearly written and calling on the original sources. No unnecessary legal jargon here.

Here are some useful quotations:

(at 34) People who lack the capacity to make (or implement) their own decisions about where to live may justifiably be deprived of their liberty in their own best interests. They may well be a good deal happier and better looked after if they are. But that does not mean that they have not been deprived of their liberty. We should not confuse the question of the quality of the arrangements which have been made with the question of whether these arrangements constitute a deprivation of liberty.

(at 35) …it is quite clear that a person may be deprived of his liberty without knowing it. An unconscious or sleeping person may not know that he has been locked in a cell, but he has still been deprived of his liberty. A mentally disordered person who has been kept in a cupboard under the stairs (a not uncommon occurrence in days gone by) may not appreciate that there is any alternative way to live, but he has still been deprived of his liberty. We do not have any difficulty in recognising these situations as a deprivation of liberty. We should not let the comparative benevolence of the living arrangements with which we are concerned blind us to their essential character if indeed that constitutes a deprivation of liberty.

(at 36) The whole point about human rights is their universal character. The rights set out in the European Convention are to be guaranteed to “everyone” (article 1). They are premised on the inherent dignity of all human beings whatever their frailty or flaws. The same philosophy underpins the United Nations Convention on the Rights of Persons with Disabilities (CRPD)…

(at 37) …what is the essential character of a deprivation of liberty? It is common ground that three components can be derived from Storck, paras 74 and 89, confirmed in Stanev, paras 117 and 120, as follows: (a) the objective component of confinement in a particular restricted place for a not negligible length of time; (b) the subjective component of lack of valid consent; and (c) the attribution of responsibility to the state…

45. In my view, it is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else. This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings, and is confirmed in the United Nations Convention on the Rights of Persons with Disabilities. Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities.

46. Those rights include the right to physical liberty, which is guaranteed by article 5 of the European Convention. This is not a right to do or to go where one pleases. It is a more focussed right, not to be deprived of that physical liberty. But, as it seems to me, what it means to be deprived of liberty must be the same for everyone, whether or not they have physical or mental disabilities. If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.

And even a good quality, but over-controlling, social care provision aimed at providing for a disabled person’s well-being still deprives them of their liberty, so you have to apply the safeguards.

For social workers and providers of social care, this makes it clear that even if what you are doing is for someone’s protection, and even if disability may lead to concern for someone’s safety and well-being, close supervision and restriction in the freedom to decide where you can go is still a deprivation of liberty, and requires the use of the safeguards.

Link to legal commentary: Supreme Court hands down decision on the joint appeals of Cheshire West and P&Q (MIG & MEG) – the Court ruled that all three were deprived of their liberty – Lexology.

Link to the Supreme Court Judgment Look for 19th March 2014 and click on ‘judgment’ in the right hand column in the cases of P and P and Q to get a pdf; the pdf is the same in both cases, since the judgment covers both cases. P and Q is what has been known as MIG and MEG in earlier proceedings.

Written by Malcolm Payne

21 March 2014 at 12:40 pm

Seeing beauty in people gives them dignity – a good principle for good practice

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140222 Nursing and public healthBecause I’m involved in international social work, I often receive publications from foreign lands, although equally often they are in foreign languages which I don’t understand, or in the English as written by people who don’t quite get it right. One editorial board I contribute to is for a journal published from Wrocław in Poland called Nursing and Public Health Quarterly (well actually Pielęgniartswo I Zdrowie Publiczne but I thought it would be unhelpful to provide a non-translated title). I originally got involved, because the School of Public Health in Wrocław is very involved in palliative care.

This quarter’s papers include a really interesting brief paper, with an English abstract, which argues that beauty is a mystery, but that seeing it in people accords them the greatest possible human dignity. The writer has a set of questions for his nursing/medical students: they have three minutes to answer each, so he gets an unconsidered response. They are:

  • What is good?
  • What is beauty?
  • What is freedom?
  • What is love?
  • What is dignity?

I think these are a good set of questions to ask beginning practitioners in health and social care, to get them to think about the objectives and values inherent in their work. In fact, we could all ask ourselves these questions regularly.

You can read the abstract here.

If you can read Polish you can go the the journal through this link; its articles are online – there are also occasional English articles.

Written by Malcolm Payne

24 February 2014 at 11:03 am

Canada on assisted suicide: documents and reports

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130618 Canada assisted suicideThe Quebec Parliament is considering assisted suicide at the moment, and I have created for my own use a listing of documents, and thought you might like access. It’s on Flipboard, and if you click on the link, you will see a series of panels. Click on the one you want to read and when it comes up on your screen in a dialogue box, click to go to the reading.

There’s a CBC news item from 13th June, explaining, as you would expect, that there is considerable political debate.

A good starting point is the Parliament of Canada report on assisted suicide from 1995, ‘Of life and death’.

There’s an update on this from June 2000, ‘Quality end-of-life Care’, which majors on the role of palliative care.

‘End-of-life decision-making in Canada’ is the report of a Royal Society of Canada expert panel; one of the assets of this is a good list of definitions.

There’s also a chapter from an online textbook ‘The Canadian Bioethics Companion’, which looks at a wider range of end-of-life issues.

Link to the Flipboard listing

Written by Malcolm Payne

18 June 2013 at 3:10 pm

Artificial hydration & nutrition: a Catholic view misunderstands doctrine and healthcare reality

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A Catholic website (American) states absolutely that it is Catholic teaching that artificial nutrition and hydration must be continued until death, except in what are claimed to be rare cases where this will make people uncomfortable because they cannot assimilate it, accompanied by the view that this is starvation. But many healthcare professionals would say this is not rare at all right at the end of life; people’s bodies naturally reduce their nutrition and hydration requirements. The website cites a Vatican statement that stopping artificial nutrition and hydration is against Catholic teaching. But if you go there…

…this is not what it says at all. The Vatican statement is solely concerned with people in a ‘permanent vegetative state’, following a controversial American case of a situation that many healthcare professionals would disagree about. The official statement is mainly about not withdrawing artificial nutrition and hydration to speed the death of people in this position. It really does not refer to people who are in the last few hours of dying, where withdrawing artificial nutrition and hydration is routine, as in the Liverpool Care Pathway, a well-regarded protocol for caring for dying people.

The website represents what is claimed to be an ethical view based on over-the-top interpretation of Catholic doctrine, when the official Catholic view is much more reasonable.

The Catholic website rather charmingly presents its statements of doctrine as though they were on parchment. And the guy who signs them is called a ‘Prefect’. Rather confirms one’s impression of Catholic hierarchy: do the prefects have fags?

(For my fairly large number of American readers, ‘fags’ at high-prestige English private schools, including Eton College, which educated the heir to the throne, are junior boys who, I understand, do domestic tasks for the senior boys, which is called ‘fagging’. Prefects were senior boys who historically were entitled to ‘beat’, that is cane, the juniors. I just thought you ought to know about some of the stranger traditions of the British upper classes.)

Q&A from Catholic website, Our Sunday Visitor: Church’s teaching on end-of-life care.

Vatican statement: Statement by the Congregation of the Doctrine of the Faith, 2007.

Information about the Liverpool Care Pathway: Marie Curie Palliative Care Institute, Liverpool.

Written by Malcolm Payne

6 August 2012 at 12:38 pm

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).

Written by Malcolm Payne

31 July 2012 at 3:43 pm

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