To Hull to the advisory group for the spirituality in funerals project, where the most interesting experience was the way the humanist officiant (the person who conducts a funeral) distinguished herself very strongly from sceualr funerals because humanists have beliefs and values. I’m not sure this is an accurate distinction; presumably secularists have values, but not such a consistent set as humanists. This interests me because I am trying to write at the moment about what social work would be like if it were clearly humanist. Some writers tend to say this, meaning humanitarian, while others think that humanist means like humanistic psychology, with a focus on the whole human being. Humanism as I understand it includes this, but I think some writers do not see humanism as being, as secular humanists would say, opposed to religion. Although there are Christian and Jewish humanists, too.

This interesting funerals project, which has been going for a few months now, has reached the stage of the researchers attending funerals. The process is that the funeral director inviyes the researcher to the meeting with the bereaved people, then attends the family’s meeting with minister of religion or secular officiant , attends the funeral and then interviews the family afterwards. The idea is to identify spiritual ideas that emerge in the planning and conduct of funerals. One foreign researcher surprise at the sombre clothing British people wear to funerals; not so in his country. I had taken this for granted; it’s always the unexpected things that stop you in your tracks about other cultures.

Website for the project: http://www.hull.ac.uk/socsci/research/projects/spirituality/index.html

A paper in Ethics and Social Welfare, which perhaps most palliative care colleagues will not see, containing a case study of the ethics of discharge from a hospice, and also commenting on clinical ethics committees in hospices.

The case was of an older woman who said (probably rightly) that she would die more quickly if discharged from a hospice to a care home. See my post about a research article on the same subject on 4th September 2008. The paper tells you about a framework for looking consistently at ethical issues, ETHICS: in summary:
– enquire about the facts
– think through the options
– hear views from those involved
– identify principles
– clarify meaning and implications of values
– select a course of action and present the arguments for and against.

You might have to do this last move several times for different courses of action.

Gallagher, A. and Sykes, N. (2008) A little bit of heaven for the few: a case analysis. Ethics and Social Welfare. 2(3): 299-307.

This week is becoming assisted dying week in the media. On Monday, Margo MacDonald, a member of the Scottish Parliament with Parkinson’s Disease, pursued a personal investigation about assisted dying; she has been saying for some time that she might want to commit suicide as her condition worsens. The programme was a series of interviews, which reflected a range of for and against positions. For me, it gave a sense of people talking past each other. I had the feeling that people opposed were speaking of principles, such as God-given life, which were just not relevant to the concerns of people wanting to stay in control of how their illness or physical changes were affecting their lives. These concerns were just rejected by those with principles. The relevant BBC website is: http://www.bbc.co.uk/iplayer/episode/b00fzc1x/Panorama_Ill_Die_When_I_Choose/

Then, we have had the Director of Public Prosecutions explaining why there was no prosecution of a family accompanying and helping a young man disabled in a sports accident to Switzerland to die in the Dignitas clinic. Most of the points were about the specific circumstances of the case, although some of the press were hailing this statement as making it clear that there would be no future prosecutions.

Then, Sky had a programme last night in which a man with motor neurone disease was shown actually dying in the Dignitas clinic. The BBC News reporting of this had Ilora (Baroness) Finlay, a renowned palliative care physician, commenting among other things that control of the time of death was not necessary to dignity in dying; it was perfectly possible for everyone to die with dignity.

Again, I think this is an example of people talking past each other. It seems to me that most people accept that doctors and the health service do as good a job as they can in helping people die with dignity, and we could do better if fewer went into emergency units to die. But with an increase in disabling conditions as people survive infections and other illnesses, due to the success of medicine, many people also do not see the need to prolong life when it becomes burdensome.

I’ve seen two points well-made, one by Gordon Brown in Parliament and the other by the philosopher Mary Warnock in The Guardian.

As a social worker my experience tells me to worry about the point that Gordon made at Prime Minister’s questions, emphasising that these are complex personal and family decisions. He said: ‘It is necessary to ensure that there is never a case in which a sick or elderly person feels under pressure to agree to an assisted death or that it is the expected thing to do. That is why I have always opposed legislation on assisted death’. See the full answer at: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm081210/debtext/81210-0003.htm

As a concerned citizen, I think many people would accept Mary Warnock’s point that it is a ‘frivolous distinction’ to accept that in reality people who want assisted suicide can trail off to Switzerland but that we cannot accept assisted dying in te UK. That is, I would mention the practical point, if they can find someone to help them go to Dignitas, but not if they can’t, which is another inequality, because it’s saying if you have the money and the motivation you have this freedom, otherwise you put up with British law. There is a wide range of comment on the Guardian website.

Warnock, M. The legality of euthanasia need urgent clarification The Guardian 11th December 2008: 43. http://www.guardian.co.uk/society/assisted-suicide

A nice paper in BMC Public Health points out that research ethics committees bureaucratise ethical review into a tickbox process, with a 68-page form designed mainly for clinical and pharmacological research obstructing population-level and non-clinical research.

Edwin R. van Teijlingen, Flora Douglas and Nicola Torrance (2008) Clinical governance and research ethics as barriers to UK low-risk population-based health research? BMC Public Health, 8:396 doi:10.1186/1471-2458-8-396

Find it at: http://www.biomedcentral.com/1471-2458/8/396/abstract

The House of Lords had a debate yesterday on end-of-life care; this allowed Lord Warner to ask for support for the Dignity in Dying charter for dignity at the end of life. This allowed their Lordships to canter round the same topics as the Westminer Hall MPs a week or so ago. As a member of the British Humanist Association, Warner, of course, seeks to argue for people’s rational control of decisions, and therefore, supports Dignity in Dying’s aim to promote assisted dying.

Warner, experienced both in social care (as a former Director of Social Services) and health care (as a minister) also mentions the importance of advance care planning and open communication between health and social care staff; these factors also promote rational decision-making and got wider support in the debate.

The point is that social care staff have long-standing relationships, sometimes years of caring services, with people at the end of life and ought to be well-placed to respond to their concerns about planning for their death.

However, end-of-life care is so medicalised that they do not understand it as their role to make sure that these concerns are picked up and dealt with. The end of life care strategy rightly picks up the need for better training in social care, firstly of social workers who have the complex assessment and review role, and then of everyday carers, who can pick up and respond appropriately to end-of-life worries.

Read the debate at: http://www.publications.parliament.uk/pa/ld200708/ldhansrd/text/81118-gc0001.htm#08111883000002

Hung on the recent case of a 13-year-old girl whose doctors thought about forcing her to have a heart transplant when she refused, there was a Westminster Hall canter round the issues about assisted dying (Westminster Hall is the sub-Parliament, where MPs have interesting but not politically important debates). The issues about the young woman were around her entitlement to express a view as a child, but the debate went much wider and covered the usual ground, mentioning also the recent case where a patient tried to get the high court to say that the Crown Prosecution Service should publish its guidance.

I understand that people feel that they need some certainty in these situations; but there’s no certainty in death. As a social worker, accepting the court’s view that it’s a matter for Parliament, I worry that human situations are generally too complicated to be susceptible to a simple legal answer, and people have to accept that those involved will inevitably have to use their discretion.

The Westminster Hall debate is at:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081111/halltext/81111h0005.htm#08111147000004