Social work and end-of-life care

Social work is important in end-of-life care

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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

Hospice volunteers’ experience adds bite to training role plays with doctors

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Role play 140111In an interesting article, a German researcher looks at volunteers from hospices who act as patients in role plays with trainee doctors. The volunteers rely on their experiences in working with patients to inform their acting; it gives added reality to the role plays. Hospice volunteers also have their own experiences to draw on, since many people volunteer in hospices because of a positive experience as carers of their own relatives. It sounds like a useful way of adding a little bite to what can bean undemanding way of learning.

Link to the article

Written by Malcolm Payne

13 January 2014 at 12:47 pm

Posted in carers, hospices, professionals

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Accepting the risks of people living in their own homes – a Court of Protection case

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Any social worker with older people will have experienced the situation where the extent of care someone needs makes them unhappy: nobody likes to be dependent, and often people have to put up with it. But this is also sometimes about the end of life. It’s not possible to work in end-of-life care for long without coming across someone who wants to go home, but is putting themselves at risk by doing so, because their care cannot adequately be provided at home. The professionals often react to this by refusing to accept the risks. A Court of Protection case looked at a deprivation of liberty case that raises some of these issues.

The case was unusual in that M, a woman of 67 years, was only considered not to have mental capacity in relation to her diabetes care; she was fine in other aspects of her life. There was a record of her going home, not managing her diabetes properly and having to be expensively re-admitted to hospital. The CCG (clinical commissioning group) paying for her care would not fund 24 hour care at home,which would probably be too intrusive for M anyway, and regular nurse and carer visits were not enough to make sure she kept to her regime, so they were paying for her to be in a care home, where her condition and diabetes management had improved. But M found this particularly unpleasant, being a private person who disliked a communal lifestyle. Many of the other residents were much older and had dementia – not attractive company for a youngish woman. She also had a partner who supported her, but was not living full-time with her and could not provide for all her care needs. It seemed she was being deprived of her liberty simply to keep her alive for as long as possible. One of the witnesses said: ‘…at the care home there is almost complete certainty of physical safety at the cost of the happiness of M’ (para 32).

The decision was about the balance of risks: should she put up with a unwanted lifestyle simply in order to have her life preserved? The judge’s conclusion is:

In M’s case there is little to be said for a solution that attempts, without any guarantee of success, to preserve for her a daily life without meaning or happiness and which she, with some justification, regards as insupportable (para 38).

So he allowed some time for arrangements to be made and then withdrew authority for the deprivation of liberty order.

The judge makes the point (at para 41) that he accepts that the court should take responsibility for such decisions rather than the professionals, whose duty of care means that they should not have to make this judgement. I’m afraid I’m a bit more critical of the professionals. What is a care professional for, but to help service users balance their various needs? One of the lacks in this case seems to me to be a social work perspective which sees people holistically, not as patients having services delivered, but as human beings living a social life with relationships that are important in themselves, and whose preferences for the kind of life they want to lead having an important place in the decision-making. Also, I can’t help imagining that the CCG was not wanting a return home because it would have to pay the expenses for re-stabilising her care in hospital again if the return home failed – the care home was the cheap option. Perhaps improving the quality of care and the relationships between its staff and M and her partner was too much like expensive hard work.

The judge also commented how good it was that the judge at first instance – this was an appeal – had visited M at the care home and listened to her views. He said:

The visit has therefore had the dual purpose of informing the court of M’s views and of making M feel connected to the proceedings without putting her into the stressful position of having to come to court in person. I commend this as an approach that may be of value in other cases of this kind (para 42).

So let’s have no nonsense about courts not stirring from their imposing buildings and going out into the real world.

Link to a legal commentary. This lists the law firm’s newsletters; scroll down and click on: Mental Capacity Law Newsletter – December 2013 mc_law_newsletter_december_20132.pdf

Link to the report of the court case.

Written by Malcolm Payne

8 January 2014 at 1:20 pm

Social workers asked to assist a suicide: Court of Appeal decision

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20130910 NicklinsonThis post is about right to die and assisted suicide cases, which were reviewed recently by the Court of Appeal (Civil Division), including the well-known Nicklinson case:

Link to the judgement (there is a good and authoritative summary of the present law at paras 16-36)

I’ve been looking at the judgement (about the Nicklinson and related cases) and find that it actually talks about the position of social workers (and carers) if they help someone to die out of compassion. Here is the paragraph (141):

The Lord Chief Justice does not accept that the guidance creates the uncertainty which we have identified. He believes that it is tolerably plain that if a social worker acts out of compassion, he or she will not be prosecuted even if paid for providing the service since the purpose of paragraph 43(13) is to deal with “profiteering”. However, the helper could not be the social worker or carer who has had the responsibility for caring for the victim since he or she is in a position of trust. This might be the proper construction of the guidelines, but we cannot, with respect, feel confident that it is. Clearly Martin’s lawyers and social workers are not confident that it is; and nor were the members of the Falconer Commission. If the DPP intends to convey the message as the Lord Chief Justice understands it, we see no reason why it should not be spelt out unambiguously.

Here is how the two majority justices set the issues out:

These appeals concern individuals who suffer from permanent and catastrophic physical disabilities. They are of sound mind and acutely conscious of their predicament. They do not want to suffer a painful and undignified process of dying. They wish to die at a time of their choosing. However, they are not physically capable of ending their own lives unaided…Each has a settled and considered wish that his death should be hastened by the requisite assistance. Each contends that as a matter of both common law and European Convention of Human Rights law (“the Convention”), those who provide him with assistance to bring about his death ought not to be subject to any criminal consequences. The current understanding of the law is that those providing such assistance will be committing the offence of assisted suicide contrary to section 2(1) of the Suicide Act 1961 (“the 1961 Act”) if they merely assist a person to take his own life, and murder if they actually terminate life themselves.

Social work is dealt with (in passing) because the justices decided they needed to consider the adequacy of the Director of Public Prosecutions’ (DPP) statement (for the Crown Prosecution Service – CPS) of the factors that he takes into consideration when considering whether to prosecute someone for assisting another person’s suicide. Basically, the more you can demonstrate a close relationship to the person and lack of self-interest, the less likely you are to be prosecuted. So a relative who clearly acts out of compassion is unlikely to be prosecuted. The reason why this came up was that one of the people who wanted help to die argued that the law (including subsidiary bits of law such as statements like the DPP’s) should be clear and accessible, but in this case it was argued that it wasn’t.

Link to the Crown Prosecution Service policy on assisted suicide  This is also set out in paras 127-8 of the case report.

Obviously, someone’s social worker does not come into the close relationship category, although they may be disinterested. Anyone who has worked in palliative care knows that social workers are often asked about the possibility of helping someone commit suicide, or facilitating the trip to Dignitas, the best-known option in a foreign jurisdiction for Europeans to get assistance with suicide.

Link to Dignitas  (I provide this link for information, not expressing any view about its policies and practice)

The point about this is that English law gives the courts and the DPP considerable flexibility in looking a a particular case to see if a prosecution is reasonable. Because the law has that flexibility, the European Court of Human Rights has determined that the English law (which contains a blanket ban on assisted suicide) is not an interference with people’s rights under Article 8 of the European Convention on Human Rights, the right to a private and family life. The implication of this Article is that states should not interfere with actions that people do as part of their personal and family life.

Link to the European Convention on Human Rights

So, the administrative flexibility is an important part of the law, but this sometimes makes it unclear what your position is when faced with one of these situations. the way hospices often deal with this is simply to say that as organisations that have a responsibility to comply with the law, their staff must comply with the blanket ban on assisted suicide. This is also a practical position to take, because, as most people who have worked in end-of-life care know, many more people are worried about medical help leading to an early death (hence the anxiety about the Liverpool Care Pathway) than are wanting to pursue suicide.

So social workers are usually in the position that they can help people discuss what they believe and want to do, but not actively help them with anything. This puts them in the category of ‘class 2’ helpers, and this may also include other carers who are not close relatives of the person who wants to die. The position of close relatives is clear, but not others, and therefore not social workers. The problem partly is that the DPP cannot produce guidelines that refer to the situation of the person who wants to die, because this would in reality introduce a situation in which homicide might be accepted legally as justified in such circumstances.

And although helping out of compassion is one of the factors that may mean that a professional is not prosecuted, this is only one factor and nobody can know how the DPP will exercise the discretion balancing that against the other factors in the list. Let’s look back at Para 141 of this judgment, which I reprinted at the beginning of this article, which refers to the views of the Lord Chief Justice (LCJ) in dissenting from the majority judgement in this case. The LCJ argued that the main aim of this provision was to prevent profiteering, and that social workers, even if they were paid, could assist out of compassion. But the majority in the Court of Appeal does not agree, and accepts that general view that a professional (or non-related carer) must still be quite uncertain. Hence the argument that this should be made clearer. We shall see.

Written by Malcolm Payne

11 September 2013 at 11:05 am

Compensation when complex care goes wrong: we need public service not medical negligence

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130701 No fault claimsAn interesting comment from a lawyer about whether a ‘no fault’ basis for claims against the NHS would be better than the present system where people who are dissatisfied with their care on the NHS and seek compensation have to go to court. She’s writing on a blog about clinical negligence. Her view is that because you have to have expert evidence, it discourages people trying it on, and leads to a fair outcome. Many people also argue that the court system has a formula for compensation which is more realistic than the amount that would normally be arrived at by a bureaucratic system, in which the government would inevitably have a hand.

The main argument for a no fault system is that if you need compensation for something that has gone wrong, you have needs that should be met, and meeting those needs should not depend on whether you can prove someone was at fault. Often things go wrong and nobody is at fault, but your care needs still have to be met. And it means you have to go into battle, in public, and the medical profession has it well-sorted to defend themselves at all costs. Also, it often means that people who can prove a fault and get compensation get more choice and better, more luxurious care than someone with just the same needs you cannot prove a fault. Why should the wronged get better care than the unlucky?

One view of the interests of public policy, which this comment alludes to, is that having an adversarial system encourages the NHS (which after all is a public service) to conceal problems rather than seek to get it right for you and, by improving their services, for later patients too. Also, of course, it sets people against their doctors and service providers, when they will continue to need care later in their lives, but might often be seen as troublemakers. And where it is a public service, like social care services still are, a complaints mechanism and political responsibility should still play a part. The problem with just accepting a complaints mechanism and no fault compensation is that it seems to be impossible to get public services to look at their what they’ve done and acknowledge it when they’ve got it wrong. That’s probably human nature.

Added to the natural human tendency to be defensive if you are in the wrong, the market system of care, with bits of the service increasingly privatised, make it increasingly hard to tell what you should hold a public service responsible for. In the Guardian today, film-makers are complaining about the BBC ‘commissioners’ interfering in their creative processes to pursue the channel ‘demographic’, by which I mean some marketing policy that they’ve drawn up to differentiate their channel from some other piecemeal provision. Are NHS or social care commissioners likely to be any better at valuing creative but expensive care, or ideas that don’t fit the standard mold of policy that is in fashion at the moment? NHS and social care managers are also inclined to interfere with openness with patients to protect the market view of their bit of the health service; I suspect this is the main source of the problems over the Care Quality Commission, also in the papers over the last few weeks. It’s not that the people at the top were inherently evil-doers, it’s that in the environment that our politicians have created in which everything, including our health and social care, is bought and sold, the selling bit of the job means that managers have to abandon honest human relationships in favour of brand management. And they’ve learned as part of the influence of private sector management on the public sector this over the past twenty years, so they’ve lost the public ethos of service and concern for patients.

But the real problem with compensation claims for medical negligence is that it deals with a particular kind of medicine, but not the broad care services of which medicine is a part which we have seen in the news lately. What is the point of suing a doctor for compensation if the problem is with the coordination and integration of a whole care service? Nurses and other professionals, including social workers, are involved and all kinds of provision, which are not the subject of a prescription or an operation. One bad thing about this is that it encourages people to see doctors as the people ‘in charge’ who order everyone else around, and the doctors to feel that they are entitled to do that because they are legally responsible if the care goes wrong. This creates the wrong attitudes among some doctors and encourages a handmaiden approach among other professionals rather than multiprofessional teamwork.

What is the role of medical negligence in end-of-life care, for example. Yes, it is possible that the doctor gets their dose of morphine wrong, or a nurse fails to respond to a frustrating patient on the buzzer for the nth time, but the quality of the service mainly depends on a seamless integration of a wide range of helpers mainly in people’s own homes. This may include social work, whose role is particularly undefined and poorly understood by everyone involved, and so therefore not readily liable to some kind of compensation culture. We do need a sensible way of judging whether someone got a good deal for services like these when they are dissatisfied or need compensation. And since hospices are small providers in an increasingly commercialised world, you do wonder whether the new NHS is going to mean that marketing is going to be to the fore and admitting mistakes and improving service quality will fall by the wayside.

And what about the medical care which fails to acknowledge end-of-life care at all? Most people who have worked in hospices have experienced the well-off patient (and occasionally not so well-off) transferred at the last minute from the private hospital whose cancer doctor has been telling them for weeks that the latest (expensively charged-for) procedure is certainly going to cure them, and who then need to get them off the premises quickly before they actually die. I’ve noted before that the caring ads of the private insurers that you see selling their cancer care wares, while increasingly recognising the psychological elements of care that they need to be concerned with, still fail to mention that actually quite a lot of people still die from cancer.

Try making a self-care plan for yourself or service users and carers

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Social-Work-Tech-Self-Care-PlanSocial Work Tech’s Ignacio Pacheco produces a nice format for making a self-care plan – for thinking about how you can look after yourself against the stresses of life. You can do it yourself or give it to service users and their carers. It’s usefully simple and clear, and you can use it on paper or on a flipchart of chalkboard. The website (Social Work Tech) has a short video explaining it and other information. You can download the document in various formats.

Link to Social Work Tech website.

Written by Malcolm Payne

25 June 2013 at 10:34 am

Empathy: The Human Connection to Patient Care – YouTube

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Empathy: The Human Connection to Patient Care – YouTube.

This is quite a nice short film, which doesn’t tell you much about empathy, but does emphasise how everyone (including staff) for at home, in hospital or hospice or out and about has wider life concerns as well as their reason fr being involved in caring – and the concerns are not necessarily immediate or directly connected to their role – the young doctor who is seven years free from cancer, for example. Watch the young woman and her mother (?) hugging as they’ve just signed a do not resuscitate decision.

130617 Empathy

Written by Malcolm Payne

17 June 2013 at 1:41 pm