St Christophers
Malcolm Payne

Social care and social work are important in end-of-life care.

Malcolm Payne's blog focuses on developments in social care and social work that affect palliative and end-of-life care. It is part of the information work of St Christopher's Hospice, London.

Misys Charitable Foundation

Archive for the ‘spiritual care’ Category

Assisted dying prominent this week

Thursday, December 11th, 2008


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

Over biomedicalised research ethics

Wednesday, December 3rd, 2008


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

Dignity in dying debate in the Lords (and social care)

Wednesday, November 19th, 2008


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

Discretion on assisted dying

Wednesday, November 12th, 2008


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

Blog live on the internet – progress

Tuesday, November 4th, 2008


On this day, when Social Care/Palliative Care is live for the first time on the internet, I thought I would provide signs of progress. No I don’t mean the world is about to get better, but the rebuilding works at St Christopher’s have begun to produce results: there are new bits of the building.

A few weeks back, we saw in a post the closing of the old chapel. Then we saw the as yet unopened new Pilgrim Room. Now it is open and being well-used by patients and families: here is a pic of its newly commissioned window:Pilgrim glass 2

Primary Care Conference

Thursday, May 22nd, 2008


To the Primary Care Conference in Birmingham, where a day-long series of seminars on palliative care were very well-attended, by community healthcare nurses, GPs and a range of other people. I gave a talk on some structured approaches to assessment and intervention on spiritual care for dying people, with references to some useful tools.

Child protection ethics

Thursday, May 22nd, 2008


Picked up at the Primary Care Conference the interesting journal Clinical Ethics. Vol 2(4) has a good article on the ethics of child protection work from a medical point of view, particularly looking at recent GMC cases, but also wider duties on healthcare staff. While all healthcare staff have a clear duty of care to children, the ambiguity of many of the indicators of child abuse raises questions about how proactive they should be on pushing a child into the system, particularly if you have doubts about how effective the system is in helping children.
Larcher, V. (2007) Ethical issues in child protection. Clinical Ethics 2(4): 208-12.

Autonomy

Thursday, May 22nd, 2008


Also a good summary of issues around autonomy, making the point that capacity is about competence to decide on a particular point, whereas autonomy is a more general ability to make choices. It interestingly distinguishes between autonomy as exercising a choice, as a form of moral decision-making, as connected with integrity and identity and as defined by procedural requirements.

Slowther, A-M (2007) The concept of autonomy and its interpretation in health care. Clinical Ethics. 2(4): 173-5.

St Christopher's entrance last year

St Christopher's entrance last year

The assisted dying movement and psychiatric illness

Monday, May 12th, 2008


The Guardian has an extended feature today about a Reverend Exoo who is helping people to commit suicide by staying with them while they do it (‘I make it look like they died in their sleep’ Jon Ronson, Guardian 2: 4-6). It seems there is going to be a tele prog on his activities next week. The article raises some of the questions about assisted dying, particularly helping people to get through depression and psychiatric illness, rather than accepting at face value an expressed wish to die. Exoo seems, by the manner of his involvement, not to accept and respond to the ambivalence of many of the people who talk about committing suicide but do not want to fulfil their talk.

Pic of the entrance to St Christopher's Hospice

Pic of the entrance to St Christopher's Hospice

Why Caldicott?

Tuesday, April 29th, 2008


Somebody asked: ‘why is the person who’s supposed to guard patient confidentiality in a health and social care organisation called a Caldicott Guardian?’ Dame Fiona Caldicott’s name has been forever linked with a tribe of information bureaucrats, or at least linked until the next report or reorganisation. She chaired a committee that reported in 1997:

Department of Health (1997) Report on the Review of Patient-Identifiable Information. London: DH. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4068403