Social work and end-of-life care

Social work is important in end-of-life care

Consultation on assisted dying bill: info, comment, social workers’ roles

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As I said in the previous post, the All-Party Parliamentary  Group on Choice at the End of Life is consulting on a draft Bill on assisted dying.

Social workers are likely to be involved

Here in some info and comment on the draft Bill, including some pointers to where social work might be affected. Although we usually think of doctors being the main group affected by assisted dying, because they will be the main decision-makers and they and nurses will probably be the ones who set up the actual means of dying, social workers are likely to be involved because they are part fo the teams caring for the patient and helping with the decisions, and their records and knowledge and skills in working with families are likely to be used in decision-making.

Info about the consultation

You have to reply by the end of this week (20th November) and there will be a report on February on what people said.

Link to the Draft Bill and Consultation form.

Info about the proposed Bill and its priorities

The proposed Bill is very limited: it is for people who are diagnosed with a terminal illness and who have mental capacity to make the decision to kill themselves. People would not be allowed to make advance decisions if they lost capacity. Therefore, the proposals would not affect a large group of people who might want help to kill themselves because they are growing older and more frail, or who had considerable disabilities that were not terminal, or those who have dementia when the issue arises. It would be the dying person’s own decision, and act of suicide and their view would have to be informed, settled and voluntary.

A crucial point about the Group’s priorities is spelled out in the title of the proposed Bill: ‘safeguarding choice’. It’s about patient choice and making that choice safely, not any of the other things that you might be concerned with in thinking about assisted dying.

The APPG’s arguments for the Bill

They make arguments in three main areas:

  • patient safety
  • preventing suffering
  • patient choice

The main points are that people are being assisted to die and people helping them are unlikely to be prosecuted, but what happens is hidden and unregulated. There is no way of managing the quality of the assisted dying process or ensuring equality of access to it. Many people have gone to the Dignitas organisation in Switzerland, but this is only available to people who can afford it and who are able to travel. People who help them, including social workers who give advice, make contacts or organise travel, may be prosecuted for helping. There is evidence that in some situations doctors help people to end their lives or take action that leads to death, but this is not consistently available to people who may wish to call on such help. People also try to end their own lives and this can be distressing and is less likely to work than if doctors do it. If it doesn’t work, people may be left in distress with greater health problems as a result. There are no checks to make sure that a person is not being coerced or if they have the mental capacity to decide or full information to base a decision.

The main argument, therefore, is that people are being helped to die, but through a non-transparent process without safeguard. The Director of Prosecution has issued guidelines which mean that we all know that someone who is close to the dying person will not be prosecuted for assisting in their death, provided they clearly do it out of compassion. This means that professionals are more likely to be prosecuted for taking part in assisted dying than family members. We mainly talk about doctors in this regard, because they are likely to have the skills and access to prescribe and administer appropriate drugs effectively. All sorts of other professionals, including social workers, might become involved, however, and also have little protection. For example, social workers might be asked about whether the patient’s view of settled, based on their previous contacts with the family, or whether coercion is taking place in the family. The fact that people know there is a risk of prosecution discourages open discussion by patients of their options, because they don’t want to put people in a difficult position.

Link to the Director of Public Prosecutions guidelines on assisted suicide.

The draft Bill’s proposals

The proposed bill provides, along the lines of the legislation for mental health compulsory action, for two doctors, usually a patient’s own GP or specialist and an independent doctor, to assess patients’ capacity to make the decision, their motivation and the decision-making process, so that patients are clearly are not being coerced. My view is that they are unlikely to be truly independent, a GP or specialist would probably help to identify the so-called independent doctor and it will be known who is likely to be helpful in making a positive decision. So the GP and patient or the patient’s helpers will look for someone likely to support their views, and doctors likely to decide against assisted suicide will be winnowed out from the process. Access to the medication would come from official sources if the decision is favourable, so you wouldn’t have dangerous drugs being built up in people’s homes, as it sometimes is now.

The process would become available when an adult (not a child, and not the parents of a child on the child’s behalf) is given one year or less to live and decides of their own volition to ask for assisted death: nobody could ask on their behalf. There are two problems with this in my view. First, it does not make assisted suicide equally available, because often the healthcare system doesn’t realise that someone is dying until they are close to it, and it is well-known that doctors cannot reliably give a prognosis of how long someone is going to live, except in the very last hours. So the provision for a year of thoughtful contemplation and arriving at a settled view is likely to be unused in many cases. Second, people might ask for assisted dying not because they really wanted it but because they did not want to be a burden or thought other people felt they were a burden or because they felt they ought, or they couldn’t stand the conflict in the family about their illness and so on. There are lots of pressures on people who are dying to get on with it. the fact that they might actively ask is no protection against the risk of subtle coercions or pressures on dying people, when we ought to be concentrating on the quality of their (limiteD) life.

People would also have to have a ‘clear and settled intention’.  All the evidence is that most people don’t have such an intention. Even if they are the kind of person who makes plans, it would be the doctors’ job to make sure they were fully informed. I have my doubts about whether lots of doctors would be good at this kind of teasing out the issues for people – this is not the usual medical way of operating. Most medical communication is, quite appropriately, about making clear diagnoses and decisions about treatment, which requires a completely different set of communication skills. Some doctors do it well, either naturally or with training, but quite a lot will not do a good job. So it might fall to discussion by others, including social workers, who will have the responsibility of giving information delegated to them by doctors in a hurry.

Patients would have a period of some days (depending on the circumstances) to change their minds – a bit like the reconsideration clauses when you sign up for insurance. They would also have to be told or experience how wonderful palliative care could be made available to them; how this is done is likely to be very variable, and no real protection at all.

Doctors (or often probably nurses on their behalf) may set up a delivery system for the medication that will kill the patient, but the patient will have to be able to administer it themselves.

There would be a code of practice and an inspectorate – I can’t see the government being prepared to pay for this, and it would probably get added to the job of the already overstressed Care Quality Commission or some other similar existing body.

Citation: All-Party Parliamentary Group on Choice at the End of Life (2012) Safeguarding Choice: a draft Assisted Dying Bill for consultation. London: Choice at the End of Life All Party Parliamentary Group.

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Written by Malcolm Payne

13 November 2012 at 2:45 pm

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