Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘care’ Category

We need to think how rural end of life care would look like for people in isolated communities

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This naive American article would be impossible to write in the same way in a European country where countrywide standards of service are the norm. But it raises an important professional issue that we do have to think carefully about what end – of – life care should look like for people in more isolated rural areas, and plan it appropriately.

Written by Malcolm Payne

20 January 2015 at 12:35 pm

Posted in care, End-of-life care

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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.

Medically-assisted hydration and nutrition: authoritative research reviews

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Lots of people in palliative care face questions from patients and relatives about whether the common practice in palliative care to withdraw artificial (tube) feeding and hydration is right. Common sense tells many people that this removes the opportunity for patients to improve or recover and in effect starves them or leaves them thirsty. There are authoritative ‘Cochrane’ reviews of research in this area, which it may be useful to refer to.

Broadly they show that there is no good evidence that artificial feeding and hydration provides benefits or withdrawal of it reduces survival and there are some problems if people are artificially hydrated because they may retain too much water in their bodies. The reason is that not enough studies have been done to make a clear recommendation.

The sensible course is probably not to make too much of research either way, and to encourage people to have open discussions with patients and families in which they can express their concerns fully. It’s one of those examples where research has not been done on something that really concerns people. But at least there’s no evidence that withdrawing artificial nutrition and hydration actually does leave them without sustenance.

Link to Cochrane study on artificial nutrition.

Link to Cochrane study on artificial hydration.

Written by Malcolm Payne

3 September 2014 at 1:22 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

Think through and spell out your social work reasoning for ‘draconian’ decisions

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20140128 Adoption caseSome points in an adoption case made by the President of the Family Division of the Court of Appeal, Sir James Munby, can inform social workers about what it means to make holistic decisions, even if he’s talking about the law. He’s talking about child care services and adoption, but in the quotations that follow, I have taken out most of the references to that, so that you can see that his points have general application to all sorts of decisions by social workers (and other professionals).

Link to a legal commentary, which contains a link to the judgement

I’ve picked up this point from the legal commentary, and then expanded on it here.

He’s saying that once you have dismissed all but one option for good reason, you still have to look at that option to see if there are good reasons for rejecting that option too. If so, it may mean that you have to reinstate a less than desirable option you rejected earlier, because it’s not so undesirable as what you are thinking you should impose on a client. And, in particular, you must not accept the rejection of an option because it’s inconvenient or expensive for the service, or difficult for the social worker; otherwise people can take judicial review and judges will (or, Sir James is saying, should) be asking you some cogent questions about your reasoning.

If it’s too difficult for the social worker, get yourself a new social worker. Good practice ethics requires us (including our supervisors and managers) to think ‘am I good enough to do this or should I get someone who’s better than me?’ All social workers are not interchangeable.

We can all think of situations in which this happens: it’s not practical to make sure that someone is OK at home, so we end up by thinking she should be kept in hospital or care home, because she won’t be safe all the time on her own. But we forget, in making that choice, that the option we’ve ended up with may be safe, but it may not offer her the freedom or flexibility in her life that anyone would prefer. But because we ruled out all the other options, we don’t look at the downside of loss of freedom against the downsides of the other options.

Here’s how Sir James puts it:

2   …the appeal not merely requires us to determine an important question of law…; it also raises some very significant matters of more wide-reaching importance.

28   …the court’s assessment …must take into account the assistance and support which the authorities would offer. So “before making an…order … the court must be satisfied that there is no practical way of the authorities (or others) providing the requisite assistance and support.” …The local authorities must deliver the services that are needed and must secure that other agencies, including the health service, also play their part, and the parents must co-operate fully.” That was said in the context of supervision orders but the point is of wider application.

29.   It is the obligation of the local authority to make the order which the court has determined is proportionate work. The local authority cannot press for a more drastic form of order, …because it is unable or unwilling to support a less interventionist form of order. Judges must be alert to the point and must be rigorous in exploring and probing local authority thinking in cases where there is any reason to suspect that resource issues may be affecting the local authority’s thinking.

32. It is time to draw the threads together and to spell out what good practice, the 2002 Act and the [Human Rights] Convention all demand.

33.   Two things are essential – we use that word deliberately and advisedly – both when the court is being asked to approve a care plan …and when it is being asked to make a non-consensual placement order…

34.   First, there must be proper evidence… The evidence must address all the options which are realistically possible and must contain an analysis of the arguments for and against each option.

41.   The second thing that is essential, and again we emphasise that word, is an adequately reasoned judgment by the judge.

43.   In relation to the nature of the judicial task we draw attention to what McFarlane LJ said in Re G (A Child) [2013] EWCA Civ 965, paras 49-50:

“In most child care cases a choice will fall to be made between two or more options. The judicial exercise should not be a linear process whereby each option, other than the most draconian, is looked at in isolation and then rejected because of internal deficits that may be identified, with the result that, at the end of the line, the only option left standing is the most draconian and that is therefore chosen without any particular consideration of whether there are internal deficits within that option.

“The linear approach … is not apt where the judicial task is to undertake a global, holistic evaluation of each of the options available for the child’s future upbringing before deciding which of those options best meets the duty to afford paramount consideration to the child’s welfare.”

…44.   We emphasise the words “global, holistic evaluation”. This point is crucial. The judicial task is to evaluate all the options, undertaking a global, holistic and (see Re G para 51) multi-faceted evaluation of the child’s welfare which takes into account all the negatives and the positives, all the pros and cons, of each option. To quote McFarlane LJ again (para 54):

“What is required is a balancing exercise in which each option is evaluated to the degree of detail necessary to analyse and weigh its own internal positives and negatives and each option is then compared, side by side, against the competing option or options.”

45. McFarlane LJ added this important observation (para 53) which we respectfully endorse:

“a process which acknowledges that long-term public care, and in particular adoption contrary to the will of a parent, is ‘the most draconian option’, yet does not engage with the very detail of that option which renders it ‘draconian’ cannot be a full or effective process of evaluation.

So, in making decisions and writing reports and records of the decision, it’s important to think through and spell out all the arguments for and against options, particularly if they involve imposing solutions on an unwilling client or family. Because what the judges are saying in relation to child care can equally well be said about adult care cases as well.

Written by Malcolm Payne

28 January 2014 at 3:08 pm

Social work is needed when people with long-term illness are helped to live their lives rather than treated aggressively

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Renal medicine often presents problems for palliative care because people with serious or end-stage renal problems are often on a treadmill of regular and frequent dialysis and sometimes waiting for a transplant. Because of this it can be very hard for their medical teams to identify when they have reached the point when they should be seen as dying, and their service should take on a more palliative tinge. They often are – and feel – very ill a lot of the time, but may not experience the fear or ‘death sentence’ that people associate with cancer. At least, people used to associate the death sentence with cancer. Increasingly, though, people with cancer are treated successfully, go into remission and survive for many years and so the same issue sometimes applies: when do I decide that enough is enough (and how do I get my doctors to accept this)?

An interesting article compares survival of people with end stage renal failure who go on receiving dialysis, and those who are treated conservatively, with symptoms being managed and advice about managing their lives. At age 70, those on dialysis live longer, but may spend more time in hospital. At 80, they do not survive longer. And in both cases, those not using the hi-tech dialysis often lead very satisfactory lives.

This study speaks to a lot of things. First, they included a social worker in the team to support the conservatively treated patients. this is sensible: if healthcare services are going to focus on living a good life successfully, then people’s social relationships and arrangements for their lives are going to become more important.

Second, it raises some questions about assisted dying. Perhaps we should be looking at assisted living for people at the end stage of major illnesses, rather than arguing that they might be helped to die, or treating them aggressively and then despairing when this does not provide a very god lifestyle. Conservative treatments for major illnesses are not assisted dying, but they are providing the kind of assisted living that people feel is valuable.

Third, there is often far more choice about how you are treated if you have a major illness than the stark choice of suffering aggressive treatment or dying.

Link to the article.

Written by Malcolm Payne

16 January 2014 at 12:12 pm