Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘death and living’ Category

Death of Robert Adams, writer and social work academic

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IRobert Adams’m sad to hear of the death on New Year’s Eve of Robert Adams, my long-time co-editor and co-author, with Lena Dominelli. I have known him for forty years, since he was running a Barnardo’s youth project in Pontefract and I was an area social services officer, responsible social services in for a mining community nearby and involved in intermediate treatment for young people as it was called then.

The photo is from a joint project we were involved in between Teesside University and Uzbek universities in 2010. He worked hard with colleagues there to develop social work education, and was also involved in palliative care there, but was most strongly associated with Humberside Polytechnic/University which later became the University of Lincoln. He was also involved in generating the open learning courses and publications of the Open Polytechnic project, and his edited Foundations in Health and Social Care text many years later reflected a similar concern for well-thought-through learning materials for beginning students that were also intellectually challenging. He was a visiting professor ion a variety of places including Lund University and the University of the West of Scotland, where, in 2008, he delivered the Morag Faulds memorial lecture.
Link to information about Robert from Teesside University
Link to Teesside blog, with posts from Robert
Link to Robert’s Wikipedia entry:

Most of all Robert saw himself as a writer, and he was also an active publisher and a leading member of the Writers’ Guild. Many social workers will not know of his crime novels and stories, and there were also children’s books, poetry and other writings.
Link to the Writers’ Guild obituary

Among his successful professional writing were two important research books on protests in prisons, drawing on his early career in the Prison Service, and on protests in schools. The prison riots book received high praise from his Honour Judge Stephen Tumin, the former Inspector of Prisons: ‘This is among the handful of prison books – they include George Jackson’s Soledad Brother and Michael Ignatieff’s A Just Measure of Pain – which moves and informs. The sociology of prison riots, the causes of outbreak and the nature of the reactions, are subjects which have been largely ignored and need to be understood by those who either study criminal justice or work in the system.’
Link to Protests by Pupils: Empowerment, Schooling and the State (Falmer, 1991)
Link to Prison Riots in Britain and the USA (Palgrave Macmillan, 1994)

Among his best-known social work texts were the long-running book on empowerment, used over the generations by students, and the three large, frequently-updated books (known by those involved as ‘Big Macs’ because they were published by Palgrave Macmillan) edited by Adams, Lena Dominelli and myself. These aimed to provide a politically and socially critical perspective on learning materials for people entering social work. We were working on a further revision and his last email, sent on from his computer after his death, demonstrated a continuing lively and creative interest in social work and its future.
You can search for these and many of his other social work books on the Palgrave Macmillan website.

Our editorial meetings across the years were argumentative, funny, acerbic and creative. We all benefited from his quiet strength, his thoughtful radical perspective on the world, and his creativity, imagination and sense of fun. I am sad that Lena and I will never experience another.

Written by Malcolm Payne

9 January 2015 at 12:44 pm

Posted in death and living

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Memorial reminds us of the distress of childhood death

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Another of my pictures of memorials – I found this one in Cartmel Priory in the Lake District this summer, in the part of the Priory that used to be a local church – an immense memorial to an obviously much-loved child, who died at the age of nine. A reminder that death in childhood was common at one time, but the distress it caused was nevertheless always real. And so much of the world still experiences that distress far too often.Cartmel Priory memorial to a child who died at 9

 

Written by Malcolm Payne

30 September 2014 at 12:17 pm

Assisted dying: summary of the existing legal position

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Summary of the legal position

I’m continuing with my posts on material drawn from this summer’s Supreme Court judgment on assisted dying. A useful contribution is made by Lord Sumption when at Para 255, gives useful practical guidance and summarises the current legal position, with citations to the cases. Lord Neuberger associates himself with this summary (at Para 137), so it has great credibility and might help us present the argumeents to patients and their families.

This is useful for practitioners who often need to confirm to themselves, and also be able to explain to others, what the position is. It also explains where an advance decision, as part of advance care planning, fits into this.

255. The current position may fairly be summarised as follows:
(1) In law, the state is not entitled to intervene to prevent a person of full capacity who has arrived at a settled decision to take his own life from doing so. However, such a person does not have a right to call on a third party to help him to end his life.
(2) A person who is legally and mentally competent is entitled to refuse food and water, and to reject any invasive manipulation of his body or other form of treatment, including artificial feeding, even though without it he will die. If he refuses, medical practitioners must comply with his wishes: Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] A.C. 871, 904-905; In re F (Mental Patient: Sterilisation) [1990] 2 A.C. 1; Airedale NHS Trust v Bland [1993] AC 789. A patient (or prospective patient) may express his wishes on these points by an advance decision (or “living will”).
(3) A doctor may not advise a patient how to kill himself. But a doctor may give objective advice about the clinical options (such as sedation and other palliative care) which would be available if a patient were to reach a settled decision to kill himself. The doctor is in no danger of incurring criminal liability merely because he agrees in advance to palliate the pain and discomfort involved should the need for it arise. This kind of advice is no more or less than his duty. The law does not countenance assisted suicide, but it does not require medical practitioners to keep a patient in ignorance of the truth lest the truth should encourage him to kill himself. The right to give and receive information is guaranteed by article 10 of the Convention. If the law were not as I have summarised it, I have difficulty in seeing how it could comply.
(4) Medical treatment intended to palliate pain and discomfort is not unlawful only because it has the incidental consequence, however foreseeable, of shortening the patient’s life: Airedale NHS Trust v Bland [1993] AC 789, 867D (Lord Goff), 892 (Lord Mustill), R (Pretty) v Director of Public Prosecutions [2002] 1 AC 800, 831H-832A (Lord Steyn).

In his final point, Lord Sumption also deals with the argument, which we often hear, that this is an increasingly difficult problem, that is becoming hard to handle:

(5)Whatever may be said about the clarity or lack of it in the Director’s published policy, the fact is that prosecutions for encouraging or assisting suicide are rare. Between 1998 and 2011, a total of 215 British citizens appear to have committed suicide with medical assistance at the Dignitas clinic in Switzerland. Not one case has given rise to prosecution. Although cases of assisted suicide or euthanasia are periodically reported to the police (85, we were told, between 1 April 2009 and 1 October 2013) there has been only one recent prosecution for assisting suicide, and that was a particularly serious case.

Written by Malcolm Payne

29 September 2014 at 11:01 am

Professional assistance with suicide is different from help by relatives: Supreme Court commentary

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Is someone who assists a suicide different from the person who chooses to commit suicide? This question is answered comprehensively by Lord Sumption, in the summer Supreme Court judgment on assisted dying, that I am reviewing in this linked series of posts. I looked last time at why assisted suicide is considered a crime.

This is of particular interest to social workers, because it looks at situations where someone may be vulnerable or at risk of abuse, possibly pressurising them into agreeing to suicide because, among other things, they feel themselves to be a burden to their family. Any experienced palliative care social worker ‘s can tell you of examples where the family feels it cannot cope with a dying or sick person’s care and either explicitly want their relative to die, or make them feel that that’s what they think. Indeed, Lond Sumption quotes the British Association of Social Workers (he gets the title wrong), alongside the British Geriatrics Society and Action on Elder Abuse (also getting the title wrong),  as a ‘reputable body of experienced opinion’. I’ve edited this very lengthy section of the judgment, but you can see the main points made:

215. …There are at least three reasons why the moral position of the suicide…is different from that of a third party who helps him to kill himself. In the first place, the moral quality of their decisions is different. A desire to die can only result from an overpowering negative impulse arising from perceived incapacity, failure or pain. This is an extreme state which is unlikely to be shared by the third party who assists. Even if the assister is moved by pure compassion, he inevitably has a greater degree of detachment. This must in particular be true of professionals such as doctors, from whom a high degree of professional objectivity is expected, even in situations of great emotional difficulty. Secondly, whatever right a person may have to put an end to his own life depends on the principle of autonomy, which leaves the disposal of his life to him. The right of a third party to assist cannot depend on that principle. It is essentially based on the mitigating effect of his compassionate motive. Yet not everyone seeking to end his life is equally deserving of compassion. The choice made by a person to kill himself is morally the same whether he does it because he is old or terminally ill, or because he is young and healthy but fed up with life. In both cases his desire to commit suicide may be equally justified by his autonomy. But the choice made by a third party who intervenes to help him is very different. The element of compassion is much stronger in the former category than in the latter. Third, the involvement of a third party raises the problem of the effect on other vulnerable people, which the unaided suicide does not. If it is lawful for a third party to encourage or assist the suicide of a person who has chosen death with a clear head, free of external pressures, the potential arises for him to encourage or assist others who are in a less good position to decide. Again, this is a more significant factor in the case of professionals, such as doctors or carers, who encounter these dilemmas regularly, than it is in the case of, say, family members confronting them for what will probably be the only time in their lives.
225. It is inconclusive factually, for reasons which emerge very clearly from the report of the Commission on Assisted Dying. The only jurisdictions with experience of legalised assisted suicide are certain states of the United States, of which the most important is Oregon, and the Netherlands, Belgium and Switzerland. The data from these sources is contested and acknowledged to be of variable robustness. It is also sensitive to underlying conditions such as standards of education, the existence of long-term relationships between GPs and patients and other social and cultural factors, which are not necessarily replicated in the United Kingdom. Indeed, there may well be significant regional and sociological variations within the United Kingdom. It is plain from the expert evidence reviewed by the Commission that there is a diversity of opinion about the degree of risk involved in relaxing or qualifying the ban on assisted suicide, but not about its existence. The risk exists and no one appears to regard it as insignificant…
226. The concept of “abuse” embraces at least two distinct problems. One is that the boundary between assisted suicide and euthanasia is so porous that in practice it may be crossed too often, sometimes even in cases where there was no true consent. The other is the risk that that if assisted suicide were lawful, some people would be too ready to bring an end to their lives under real or perceived pressure from others.

Lond Sumption goes on to say whether the guidance on whether an assister who is a professional should be prosecuted issued by the Director of Public Prosecutions can be clarified further, which one of the people appealing wanted:

247. [One issue is]… the significance of compassion, which everyone agrees is critical in most of these cases. In the case of a close family member, for example a parent, child or spouse, the compassionate character of his or her motivation will usually be obvious, even if the assister stood to benefit financially by the patient’s death. …What constitutes a purely compassionate motive in the case of an outsider is likely to be much less obvious. At one extreme, the professional who assists the patient to kill himself may be a long-term living in-carer who has formed an emotional bond with the patient not unlike that of his closest relatives. At the opposite end of the range, the professional may have little or no personal acquaintance with the patient, but out of compassion for human suffering in general holds himself out as being ready to assist patients who have freely chosen suicide. Between these extremes there is an infinitely complex range of possibilities. The position of the professional is likely to be affected by his closeness to the patient, the length of his acquaintance with him, the extent of his previous responsibility for the patient’s care, his relations with the patient’s family, his opinions about the legal prohibition of assisted suicide, any relevant rules or guidance of his professional body, any involvement on his part in assisting other patients to commit suicide, whether he is paid for his assistance and if so how much, and many other matters. …It is neither possible nor proper [for the Director of Public Prosecutions] to attempt a precise statement in advance of the facts about when a professional will or will not be prosecuted. Either such a statement will have to be so general and qualified as to be of limited value for predictive purposes, or else it is liable to tie the Director’s hands in a way that would in practice amount to a dispensation from the law.

All of which makes it clear that a professional such as a social worker cannot really seek the same kind of protection from the law as a family member who assists someone to die.

Written by Malcolm Payne

26 September 2014 at 11:32 am

Why is assisted suicide an offence in the UK? And it also is in Europe and the USA

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Why is assisted suicide an office?

In this post, linked to the previous one, I’m continuing to look at some of the things said in the Supreme Court judgement on assisted dying published over the summer.

It is useful to remind ourselves how assisted suicide comes to be an offence. This is explained in the judgement at Paras 15-54. In summary, the Homicide Act 1957 defined the common law offence of murder as the perpetrator killing a person when intending either to kill or to inflict grievous bodily harm. In the judgment, Lord Neuberger says:

16…The offence of voluntary (as opposed to involuntary) manslaughter is, in effect, murder in circumstances where the perpetrator is able to raise certain specified grounds of mitigation, including diminished responsibility and loss of control (all of which are subject to certain requirements). Manslaughter carries a maximum sentence of life imprisonment, and there is no minimum sentence.

17. Mercy killing is a term which means killing another person for motives which appear, at least to the perpetrator, to be well-intentioned, namely for the benefit of that person, very often at that person’s request. Nonetheless, mercy killing involves the perpetrator intentionally killing another person, and therefore, even where that person wished to die, or the killing was purely out of compassion and love, the current state of the law is that the killing will amount to murder or (if one or more of the mitigating circumstances are present) manslaughter – see per Lord Judge CJ in R v Inglis [2011] 1 WLR 1110, para 37. As Lord Browne-Wilkinson said in Airedale NHS Trust v Bland [1993] AC 789, 885, “the doing of a positive act with the intention of ending life is and remains murder”.

In  this judgment, Lord Sumption explains why suicide was once a criminal offence and why it was decriminalised:

211. … Suicide was a common law offence in England until 1961. It was treated as a form of murder. A particular feature of the law of murder, which makes it unusual among offences against the person, is that the consent of the victim is not a defence to a charge of deliberate killing. Suicide, or “self-murder”, was therefore an offence notwithstanding its voluntary character. It followed that an unsuccessful attempt at suicide was criminal, and so was the act of an accessory. The Suicide Act 1961 abolished the rule of law which made suicide an offence, but preserved the criminal liability of accessories. As amended by the Coroners and Justice Act 2009, section 2(1) created a statutory offence committed by any person who does an act which is (a) “capable of encouraging or assisting the suicide or attempted suicide of another person”, and (b) “intended to encourage or assist suicide or an attempt at suicide.”

212. The reason for decriminalising suicide was not that suicide had become morally acceptable. It was that imposing criminal sanctions was inhumane and ineffective. It was inhumane because the old law could be enforced only against those who had tried to kill themselves but failed. The idea of taking these desperate and unhappy individuals from their hospital beds and punishing them for the attempt was as morally repugnant as the act of suicide itself. It was ineffective because assuming that they truly intended to die, criminal sanctions were incapable by definition of deterring them…

Do other countries have similar bans?

Lord Sumption also explains in 212 that research shows that most countries have a prohibition against assisted suicide:

…However, the continuing legal objection to suicide was reflected in the fact that very many countries in which suicide was lawful nevertheless imposed criminal liability on those who advised or assisted it. Research summarised in the judgment of the European Court of Human Rights in Koch v Germany (2013) 56 EHRR 6 at para 26 suggests that of the 42 members states of the Council of Europe for which information was available, 36 imposed criminal liability on any form of assistance to suicide and another two, while not imposing criminal liability on direct assistance in suicide, prohibited the prescribing of drugs in order to facilitate it. In Haas v Switzerland (2011) 53 EHRR 33, at para 55 the Court concluded that “the vast majority of member states seem to attach more weight to the protection of the individual’s life than to his or her right to terminate it.”

Lord Mance, in his judgment, makes a similar point about the US. Most US states do impose a blanket ban, but the evidence that some states dissent suggests that this issue is being reconsidered thoughtfully over time.

Written by Malcolm Payne

25 September 2014 at 12:07 pm

Supreme Court judgment: rights arguments do not justify helping people to die

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Introduction to the Supreme Court judgement

The Supreme Court judgement on assisted dying (heard last December) was published on 25 June 2014, just in time for everyone to go on holiday and forget.

Link to the judgment

It was given by a galaxy of the most important Law Lords, and the main judgement is by the President of the Court himself, it contains many interesting points. However, although there is one overall judgement, expressed at length by the president of the Court, Lord Neuberger, that the Court should not intervene, and the matter be left to Parliament, it contains extensive and complex discussion. I am not competent to cover it all, and to discuss it at length would not be appropriate to a blog, so I have selected several points that I cover in a series of posts over the next few days.

The cases considered

It covers the cases of Paul Lamb and Tony Nicklinson, both of whom have had a lot of press publicity, and an applicant called Martin. It represents the final legal position from UK law on assisted dying until they go to the European Court of Human Rights, or Parliament changes the position.
My Nicklinson was completely paralysed after a stroke in his fifties, and felt his life to be dull and pointless; he wanted to die, but was physically unable to do so without help. Eventually, he starved himself to death. Mr Lamb was virtually in the same position after a car crash in 1990. Martin, in a similar position, wanted to be helped in finding out about Dignitas, the clinic in Switzerland used by many British people to achieve assisted dying, and in travelling to it is he decided to use it. His argument was that the 2010 policy on assisted dying was ‘insufficiently clear’ about the position of health and social care professionals. I have commented on this before, and there are further useful points made in this judgement, so, in my next post I have, I have looked at these points about ‘professional assisters’, which would include social workers.

Link to my previous post on the position of social workers.

Much of the comment on the case has been about people’s ‘right’ to commit suicide based on their autonomy in making decisions about their own bodies. Many people object to the ‘blanket ban’ on assisted suicide, not recognising situations in which many people would regard it as reasonable. In a very comprehensive analysis of the human rights arguments, on this issue, Penney Lewis, in her 2007 book Assisted Dying and Legal Change (Oxford University Press) argues that there are many legal and moral points on both sides, and the disagreement between them is never going to be resolved satisfactorily.

These cases are an example of this academic finding: much of the argument put forward is found logically and practically wanting in these very detailed judgements.

In the next post, I look at the information about the statutory basis for prohibiting helping other people to die.

Written by Malcolm Payne

24 September 2014 at 11:00 am

Different kinds of meaning help us understand what’s going on

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20140915 EJPC A quick post to give you a link to info on an article I wrote in the new edition of European Journal of Palliative Care. It’s on ‘meaning’ and argues that not everybody searches for meaning in their lives as they approach the end of life, and not every issue of meaning is a spiritual care one. This link is to a brief summary on the European Association of PC website, which links to the article in the journal (the brief is free but you have to have a subscription to the journal to read the full thing or go to a library). It says you can get a 10-minute subscription to download something you want, but it doesn’t say how much that costs; probably an unreasonable amount; but many people reading this will probably have access to a library that takes it.

Link to my article on meaning.