Another day another clinical review. This one, led by the social work team, was mainly about issues in working with African people in a UK setting. As part of the discussion, though, an interesting exchange about the impact on families of people who don’t want to talk about their death.

Much of the discussion was about children, and the need to get a mother to acknowledge their impending death, so that they can work things out with their children and plan for the future. Although this is often an issue with African peoples, it also affects every ethnic group, and particularly younger patients. Nurses and social workers felt that this was an important issue to overcome for the sake of the children.

One colleague asked whether it was just as important for adults in the family. The view among nurses (no doctors present) was that their main priority was the patient, and whether adults, spouses and siblings for example, could talk with their patient about their position was that adult’s responsibility.

But social workers have, ethically, just as strong a responsibility for enabling family communication for everyone, including adults, and in general for the functioning of the family. As an advice worker pointed out, knowing that someone was dying is often crucial for securing the spouse or partner’s immigration status, and that, in turn, may well have an impact on children.

The point is a wider one, though. Should the assumption be, for a social worker and for other professionals, that another human being, just because they are an adult, is a lower priority for help than a child? You might think so when you compare the anxiety about deaths of children with the shrug of the shulders when it’s another old person who dies alone. What do you think?

I have been redoing the Hospice’s policy on confidentiality, and this means I have looked at loads of codes of ethics and practice that might be relevant to palliative care and social work. So here is a listing of British ones; often these websites have extensive additional documentation as well as the codes. Any palliative care and social work agency ought to keep up to date on the codes that are relevant to their work; most of these have been updated within the last five years. You could also compare them, to see how they differ on points of interest.

Professional regulators
Care Councils
There are different councils, covering at the moment social workers, but eventually all social care employees, for each UK nation, but they have an agreed Code of Practice (which is currently being revised); the Code also covers social care employers, who have specific duties (which hospices should ensure that they comply with if they employ social workers)

http://www.gscc.org.uk/codes

General Medical Council
Guidance on Good Medical Practice; there are other more detailed documents on this website

http://www.gmc-uk.org/guidance/good_medical_practice/index.asp

Health Professions Council
This will be taking in psychologists and counsellors, but currently covers arts therapists, biomedical scientists, chiropodists/podiatrists, clinical scientists, dietitians, occupational therapists, operating department practitioners, orthoptists, paramedics, physiotherapists, prosthetists & orthotists, radiographers, speech & language therapists.
Standards of Conduct, Performance and Ethics May 2008

http://www.hpc-uk.org/aboutregistration/standards/standardsofconductperformanceandethics/

Nursing and Midwifery Council
The Code: Standards of Conduct, Performace and Ethics for Nurses and Midwives; adopted 1st May 2008

http://www.nmc-uk.org/aArticle.aspx?ArticleID=3056

Professional organisations
British Association of Social Workers
Code of Ethics; last revised in 2002

http://www.basw.co.uk/Default.aspx?tabid=64

British Association for Counselling and Psychotherapy

Ethical Framework for Good Practice in Counselling and Psychotherapy; the most recent revision is dated January 2009.

http://www.bacp.co.uk/admin/structure/files/pdf/566_ethical%20framework%20revised%202009.pdf

British Medical Association
Medical Ethics Today: The BMA’s Handbook of Ethics and Law is a substantial book, the second edition of which was published in 2004, and there are updates dated 2007.

http://www.bma.org.uk/ethics/MET2004.jsp

British Psychological Society
Code of Conduct and Ethical Guidelines; last republished in 2006

http://www.bps.org.uk/the-society/code-of-conduct/code-of-conduct_home.cfm

International Federation of Social Workers
Ethics in Social Work: Statement of Principles, is designed to be a framework within which national members of the Federation can devise their own guidelines. Their website also has links to national codes of ethics throughout the world

http://www.ifsw.org/en/f38000032.html

(18th February 2009; inserted later because I am away)

A colleague not in the palliative care world has recently been admitted to hospital with cancer and died after only a short admission; it seems that she did not want visits from work colleagues, and people are shocked that she did not seek treatment earlier. As I read the paper on the journey home, this connects in my mind with the commentary on Jade Goody, the reality tv star who has announced she is now suffering from terminal cervical cancer, and plans to get a lot of well-paid publicity from her impending marriage and death ‘in public’, as the paper puts it, to fund her children’s future.

That’s a legitimately personal choice. How people die, who they want alongside them as they do so and how they get themselves through the process ought not to be subject to others’ demands. I was always taught that you could invite who you like to your wedding and nobody was entitled to be aggrieved; is that the same as your death? You can be generous about who is allowed in, but why should you be?

Jack Straw’s been making a speech about human rights again. The main point is to say that any charter of British Human Rights should include responsibilities as well as rights. I have problems with the communitarian view of the world. Basic human rightsdon;t come with responsibilities. A right to education for the whole of yur life (even up to the moment of death), say, or to life itself, or to healthcare treatment or (I know this isn’t in any charter) to palliative care, or indeed to having a social work service (and a decent one) which also isn’t in any charter are all things that go along with being a human being in a civilised society. They should not depend on whether we have done our duty to society, particularly some duty imagined in its own interest by some political party..

The speech at: http://www.justice.gov.uk/news/sp280109a.htm

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