A correspondent through my Google profile (http://www.google.com/profiles/malcolmpayne.payne734#about) which gets you to other things about me on the www, points me at a relevant publication.

The Friend, the Quakers’ magazine, has a recent (19^th March) edition on dying, including stuff on assisted dying, and a lot of material is available free on the internet. There are two features about the arts, including an interesting schools project illustrated by two quilts, and a choreography project, Soul Play, based on personal experience, which has gained a lot of attention and played at some important theatres.

Choreography project at: http://www.kateflatt.com/

Interestingly for a Christian website (usually against assisted dying), the assisted dying feature in this edition is from Dignity in Dying (the organisation on favour of changing the law) and does not seem to have an answer from people with alternative views. It rehashes their views; one of the issues here is that their assumption is that because the majority is in favour of assisted dying our legislators are being dinosaurs in obstructing its natural progress. The Quakers deserved a more thoughtful and balanced coverage in their magazine because the majority is only partly in favour with many limitations. Also if all the practical difficulties saw the light of day in the passage of legislation, there might be a change of mind.

The assisted dying feature:

http://thefriend.org/article/the-greatest-campaign-of-the-twenty-first-century/

The Friend magazine on the internet at : http://thefriend.org/magazine

Temple in Tokyo

We are accustomed to seeing Eastern countries as places where spirituality has an important role, unlike our ungodly country. Part of this is exoticism, of course, the peace and beauty of this Tokyo temple has many resonances with the peace and beauty of many Christian churches and Islamic mosques. However, the conference we attended in Japan was markedly professional and health and social care oriented.

I wish we could learn more about different cultural arenas of thought and debate. But then, perhaps we do not really know enough about how Christianity and Western cultures see death and dying in the 21st century. How far is spiritual care from social and psychological care? They are clearly all related, but if we say (the simplification we often use) that spirituality is about meaning, what about social meaning and psychological meaning – equally important concepts in those areas of study.

Mount Fuji at sunrise – we’re still in Japan.

The conference in Japan was – their choice of subject – on holism; I was never very sure why this was an issue for them; however, it is a current interest of mine.

I think the view of palliative care holism that it is about total pain and bringing together physical, psychosocial and spiritual issues is an outdated concept. I ask myself: what does it mean to be whole, in health and social care services? It is not just holistic medicine either, that is just looking beyond the immediate symptoms you are dealing with.

What it is about is the conjunction between health and social care; the Department of Health ‘healthandsocial’ which we have all been taught to say as a slogan of togetherness, but nobody really does anything about, especially in healthcare because they think that only healthcare matters, and that everything else ought to contribute to it, particularly social care..

Anyone who’s actually worked in social care knows, though, that it is part of a whole gamut of public services: housing, social security, justice, transport, leisure, education etc etc. Many things we do as part of social care for a frail older person involves many of these: adequate housing, adequate and correct social security, feeling safe, being able to get around in spite of frailty, being able to live some aspects of life that you enjoy, being able to develop yourself. Healthcare is just the instrument of being able to live all these social aspects of life. When you have an illness, you want to be cured so that you can get on with your life.

So the question you have to ask when thinking about holism is: what does it mean to be a human being, a whole person. And that certainly means being healthy, but it also means all those other aspects of social well-being, without which being healthy doesn’t matter much. That is one of the reasons why people are saying they would rather be helped to die than kept alive but with no quality of life. What does being healthy mean as part of being a whole human being? Being maintained alive but without human opportunity is being questioned, so we need to think about and try to achieve being wholly human up to the end of life. While that means more than healthcare, we haven’t yet done enough to say what our services need to do to achieve being wholly human. Slogans like ‘dignity’ and ‘respect’ do not achieve this, because again they are simply about being treated as human within health and social care, not being human in our whole lives.

It was assisted dying day on tv last night and in the press in the last week. To sum up:

The controversialist, novelist Martin Amis, advertising a book, complained about a tsunami of older people with dementia.

The original interview was in the Times:

He is painfully aware that his time as a writer is running out. “Writers die twice: once when the body dies, and once when the talent dies,” he wrote recently in a review of Nabokov’s The Original of Laura. “Medical science has again over-vaulted itself,” he says now, “so most of us have to live through the death of our talent. Novelists tend to go off at about 70. And I’m in a funk about it. I’ve got myself into a real paranoid funk about it, how talent dies before the body.”

I can’t help feeling he’s being a leedle dramatic here, but his hatred at not feeling “100%” is genuine. He is disgusted at the problem of the ageing population: “How is society going to support this silver tsunami? There’ll be a population of demented very old people, like an invasion of terrible immigrants, stinking out the restaurants and cafes and shops. I can imagine a sort of civil war between the old and the young in 10 or 15 years’ time.”

Amis’s solution is typically extreme: mass euthanasia. “There should be a booth on every corner where you could get a Martini and a medal,” he says. In fact, he was thinking about it only last year, when his stepfather died “very horribly”, he says. “He thought he was going to get better. But he didn’t. I think the denial of death is a great curse. We all wanted to assist him… It was clearly a lost battle.”

http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/books/article6996980.ece

The  Guardian has a video of him talking about this afterwards; he says he is a fan of euthanasia:

http://www.guardian.co.uk/commentisfree/belief/video/2010/feb/01/martin-amis-euthanasia-assisted-suicide

What is particularly striking about this comment is that it is more about ageing and dementia rather than assisted dying. This is a very negative view about ageing and its impact on society, and a very excluding view about older people and people with dementia. However, he has had some sympathy for this point of view, as opposed to the reaction to his euthanasia comment. It’s alright to feel that all the older people are a blot on the landscape then? I think there might actuially be a majority for this. Our media do not seem to have realised what, sixewise,  an important population group we are; they are still into the importance of catering fro youth because they are the future. Well just remember that older people of 60, like Martin Amis are the future, probably fro the next thirty years.

Then there was quite an interesting debate reported in the Observer:

http://www.guardian.co.uk/society/2010/jan/31/assisted-dying-debate-euthanasia

This included Ilora Finlay doing her defence of care and palliative care; a sample:

IF: The whole of palliative care is about trying to help people to make choices that are right for them, to enhance the quality of their life when they have it. That is hard work. The minute you start saying you can take shortcuts in care or you can leave people or give them the impression that things can’t be done for them, then you drive them further into despair. What you’re presenting them with is not about real choices in care, you’re giving them a choice of either staying in despair or being dead. I don’t think that is a choice.

I think this is a really good point: it is important not to polarise the issue between despair and death; there are other alternatives.

Listening to her on Today, on BBC Radio 4 on Monday morning, as they were promoting both the Panorama and Terry Pratchett programmes on BBC1 that night, I found it interesting that she was arguing to take the issue out of healthcare; make it a legal process, so that trust in doctors is not affected by providing assisted deaths. Is she recognising that the public and media pressure for some sort of provision for assisted dying makes a change in the law inevitable, and she’;s beginning to set out the stall for the way it should be organised. Of course. she was also connecting with Pratchett, because he is arguing for a tribunal to make the decisions, including medical and legal involvement, as you can see in my excerpts from his speech below.

The Panorama programme then had an extended interview with Kay Gilderdale, found not guilty of attempted murder of her daughter last week (she has previously been found guilty and sentenced for assisting suicide). The 31 year old daughter was very disabled by serious and chronic ME and had injected herself with large doses of morphine, explicitly trying to kill herself. When she seemed distressed her mother crushed up more tablets and did other things, including getting advice about how to follow through. Because she did this at her own decision, rather than just accepting the course of her daughter’s actions, this put her outside the Director of Public Prosecutions’s guidelines for deciding not to prosecute. See my post on Saturday, October 10th, 200 for information.She is not the only person recently, since Frances Inglis was given a life sentence for a ‘mercy’ killing of her brain-damaged son.

There are excerpts from Kay’s interview on the Panorama website:

http://news.bbc.co.uk/panorama/hi/

This is a news account, including an interview with a neighbour who speaks of Frances’s feelings, of the Frances Inglis case: http://news.bbc.co.uk/1/hi/uk/8466140.stm

Panorama also commissioned a public opinion poll which showed that for a terminally ill patient, 75% of people thought that family and friends (or medical professionals) should not suffer prosecution; opinion was evenly balanced where there was chronic pain. This suggests that for many people, the issue of whether patinet is terminally ill is an important factor. This reflects an unreal perception, since as Ilora Finlay said in the Observer debate cited above that deciding when someone is terminally ill is quite hard.

Article about the poll: http://news.bbc.co.uk/panorama/hi/front_page/newsid_8487000/8487768.stm

Poll details here: http://news.bbc.co.uk/1/shared/bsp/hi/pdfs/01_02_10_Poll_results.pdf

The main event last night was Terry Pratchett’s Richard Dimbleby lecture (mostly actually read by the actor Tony Robinson, since Pratchett was not well enough to be able to get through such a long )text. It was a beautifully turned speech, and there is a shortened version in the Guardian today:

http://www.guardian.co.uk/society/2010/feb/02/terry-pratchett-assisted-suicide-tribunal

The new thing about this, to me, is the suggestion of an assisted dying tribunal:

That is why I and others have ­suggested some kind of strictly non-­aggressive tribunal that would establish the facts of the case well before the ­assisted death takes place. This might make some people, including me, a little uneasy as it suggests the govern­ment has the power to tell you whether you can live or die. But, that said, the government cannot sidestep the ­responsibility to ensure the protection of the vulnerable and we must respect that…

The members of the tribunal would be acting for the good of society as well as that of the applicant – horrible word – to ensure they are of sound and informed mind, firm in their purpose, suffering from a life-threatening and incurable disease and not under the ­influence of a third party. It would need wiser heads than mine, though heaven knows they should be easy enough to find [no, I think actually is will be tough to come up with a procedure that is not horrifically bureaucxratic], to determine how such tribunals are constituted. But I would suggest there should be a lawyer, one with ­expertise in dynastic family affairs who has become good at recognising what somebody really means and indeed, if there is outside pressure. And a ­medical practitioner experienced in dealing with the complexities of serious long-term illnesses.

I would also suggest that all those on the tribunal are over 45[bit ageist that; many young people are sensitive to these issues too], by which time they may have acquired the rare gift of wisdom, because wisdom and compassion should, in this tribunal, stand side-by-side with the law. The tribunal would also have to be a check on those seeking death for reasons that reasonable people may consider trivial or transient distress. I dare say that quite a few people have contemplated death for reasons that much later seemed to them to be quite minor. If we are to live in a world where a ­socially acceptable “early death” can be allowed, it must be allowed as a ­result of careful consideration.

Let us consider me as a test case. As I have said, I would like to die peacefully with Thomas Tallis on my iPod before the disease takes me over and I hope that will not be for quite some time to come, because if I knew that I could die at any time I wanted, then suddenly every day would be as ­precious as a million pounds. If I knew that I could die, I would live. My life, my death, my choice.

This proposal speaks to one of my concerns about possible changes in the law, because I think that once these things become official in some way they also have to become bureaucratised, so that they are no longer personal decisions by those involved, but will mean officials, no matter how qualified and experienced, having to go through complex and time-consuming procedures to implement intricate guidelines. Ilora Finlay’s point in the Observer debate is also relevant, that a legal change will also lead to a change in social attitudes, which will make killing more acceptable in a variety of ways.

Amis’s point and another Finlay insight is that really this is all about care. people do not much want to be cared for for a substanital lump of their life, the care we can provide is not good enough; resources are limited and will increasingly be rationed. So are we proposing to assist in people’s deaths because we are not willing to provide the best care? At least in these cases a person providing outstanding care and clearly, as with Frances Inglis, ‘with love in their heart’ they are reacting to a personl predicament. But will official assisted dying become an acceptable practice in a policy context where we are not prepared to provide enough care services and good enough care serviecs.

And a social work view? Social workers are going to be involved, because whatever the decision-making process, social information and social records will be used as part of it. Either they will be sent out to make a report, like adoption, guardian ad litem, and social histories, or their past records will be sued to see what family attitudes are, because they will be the profession that has kept records of families.

And these matters are social and policy matters: how much care are we prepared to provide to increasing numbers of people whom the media, like Amis, find smelly and not very interesting? And who is going to provide it? There will not be enough carers and care serviecs to go round; there are not enough now. So is no services the reason we want to go for assisted dying?

I think most social workers instinctively agree that people should have the choices. but how far does poor care mean that the reality of their choices is ‘no choice’. And most of the people arguing for assisted dying currently are strong-minded middle-class people who can think through and support their own opinions. Pratchett talked about granny going and banging he stick on the tribunal’s desk. Not of lot of dying people have that capability. He talks about early decisions, but that’s only relevant to a few well-prepared, long-term disabilities; what about most of the people that I meet that are not thinking in the long-term about what is going to happen to them? Will the tribunal clog up with bureaucracies and not be able to deal with urgent cases. Or will we all say what grade of assisted dying we want in our lasting powers of attorney when we register them with the Public Guardian, as he is urging us all to do?  What about not-very-articulate people who do not have the confidence to apply to one of Pratchett’s tribunals, or need someone to prepare their case? The Government is cutting back on legal advice and aid in many socially important legal situations: is this going to be another where you either make it on your own or not at all? Will there be class inequality in making your case for assisted dying?

Even if you support assisted dying. there’s still a lot to be thought about.

Involve, the healthcare organisation that worries about user involvement in health and social care (patient involvement to healthcare people who have not imbibed the somewhat- unpleasant-and-incomprehensible-to-most-people but politically correct terminology for the people you work with) has published a review of research on involving users and patients (user of course are different from patients, because the patient’s family and carers also use your service).

It summarises a lot of useful (I originally mistyped userful and that would be appropriate too) practical information and is also a good example of how to do a literature review. Users can be involved in almost all stages of research  Increasingly, they have to be if you are going to get cooperation in being researched, as the co-badging of this report with the insignia of the NHS National Institute for Health Research shows. A lot of health researchers have not got this point yet, as a recent application to research some of our patients shows.

Only one citation from palliative care: Cotterell, P., Clarke, P., Cawdrey, D., Kapp, J., Paine,
M. & Wynn, R. (2007) Becoming involved in research: A service user research advisory group. In Creative engagement in palliative care: New perspectives on user involvement. L. Jarrett, ed.,Radcliffe Publishing, Oxford, pp. 101-115.

Staley, K. (2009)Exploring Impact: Public involvement in NHS, public health and social care research. Eastleigh: Involve.

On the web:http://www.invo.org.uk/pdfs/Involve_Exploring_Impactfinal28.10.09.pdf

The British Humanist Association newsletter (it comes by email nowadays, so it thumps into the mailbox more regularly than when they printed it) is trying to get people to sign up to the petition on the No 10 website to get a commission on assisted dying. The BHA says:

Despite continued public support for a change in the law, Parliamentarians are reluctant to take a stand on assisted dying for fear of losing the support of a vocal minority of anti-choice campaigners.

It may be humanist to support allowing people to choose when and how they die, I’m not sure about that, but if this is code for ‘that religious lot’, there are a lot of people who are for and against assisted dying for all sorts of practical and principled reasons. Those who support choice because it sounds good have often not thought through all the implications, but they know what they think about the care they are likely to get in old age. For that reason a commission might be a good idea, because it might lead to a more informed debate, in which prejudice for or against ‘that religious lot’ is not the main issue.

Certainly, I can’t help thinking that if they want to get wider support, the campaigners against assisted dying are going to need more than supporters who have a committed religious view, because the social trends that are leading people to say ‘I don’t want to go there’ when they think about years of frailty in old age are still on the upswing. There was another couple in the papers today who were not terminally ill; they told their family they had had a good life and wanted to finish it off while it was still good. A lot of people think like that.

How far is this the product of not very good care services for older people? The legislative proposals are mainly about terminal illness, so they have engaged the interest of the palliative care lobbies, but I think many people might accept they will probably get good care if they have a major advanced illness, but they certainly don’t expect to get it if they are just frail for year after year. That is really what is fueling the demand for assisted dying.

The petition website (see if your friends have signed among the 3,000-odd): http://petitions.number10.gov.uk/Assisted-dying/

The GSCC has published a ‘research’ report on how social workers might stick to their professional boundaries better. Prepared by a user advocacy organisation called Witness, which seems from its website to be in administration (ie broke), it contains some good sense.

However, as a piece of research it is lacking: there is no clue about how or why it was commissioned, nothing about who these people are who are telling us what to do, unchecked and unquestioned user views presented as gospel and the height of perceptive analysis. It seems to have been mainly about people with the rather specialised experience of social workers in community mental health teams, but this is generalised to apply to everyone in social care. This is in the tradition, therefore, of a lot of so-called research from organisations with a vested interest in slagging off professionals without carrying out coherent research to support what they are doing. It’s also not clear who these people are, because the website gives you no clue about who the trustees or staff were.

I agree there is a problem with getting at the views of users who have lost their trust in professionals, and going to relevant user organisations is an important way of gaining access to them. But because their job is to represent the interests and views of the users who’ve been wronged, it’s hard to feel that well-constructed, unbiased and effective research is going to emanate from them. After all, their role in life is to be on the side of the wronged user, not to consider fairly the issues. Apparently the GSCC also commissioned a university also to do a project drawing on professional sources, some of which this report uses to slag off the university research. You can’t help feeling that the GSCC would have done better to spend some real money on a proper research project, using Witness’s expertise (if it has any, it’s not clear), because they’re right to say this is an under-researched area.

So where does the good sense come from? By getting some genuine experience from users, of course; as they say, a few genuine quotations can tell you a lot (actually they say ‘quotes’, but I’m into improving people’s English). You can always learn something even from individual experiences, because an individual experience makes clear how it felt and what might be done better, there are always things you can generalise to improve practice. Also, some parts of the research seem to have been reasonably well-constructed (the methods are not entirely clear, particularly the selection of respondents – a constant bane of consumer research by interested organisations). It got people to discuss scenarios about what is acceptable and unacceptable boundary-crossing, even if some of the personal interviews seem mainly to have been about eliciting well-rehearsed complaints.

A big problem is that that social workers and their agencies don’t make clear who they are and what their job is. This is not exactly a surprise, in part because social workers are presented as evil busybodies by most of the press, so they’re often a bit cautious in spelling out who they are and also in part because what they do is complicated and hard to explain. In mental health, there is an element of checking up on things (risk management as some people might like to call it), and it can be hard to explain this without putting yourself in a negative light. Some well-considered information leaflets and a good introductory session are important resources that many services that include social workers do not seem to have got right yet.

Then, people worried about blabbing around the so-called multiprofessional team. Even if you say, as we do at St Christopher’s, that information is shared with the team, there is a matter of ‘need to know’; all the doctors and nurses do not need to know the full details of someone’s private life. And leaving your calling card openly in a multi-occupied block of flats, or shouting out who you are through the letter box will not endear you to people trying to survive the stigma of mental ill-health, a particular issue for these respondents.

It’s also important to make clear what control service users have in particular situations.

I did have a lot of sympathy with some of the responses to one of the scenarios: you were distressed in a meeting/in private, so your social worker gave you a hug. In public is perhaps ok, according to some of the views of people who had not been ill-used by social workers (but not by those who had). My birth family did not do social hugs and kisses, and I certainly find it disconcerting that a lot of women social workers seem to think a natural form of greeting and leavetaking is to give total strangers a hug and kiss. It isn’t in many people’s lives, and especially it isn’t if you’re a man. One of the very earliest things I was taught in residential child care is to be absolutely clear that you’re not touching clients; and if you are, make sure there are reliable witnesses about what you had to do and why. I’ve always been grateful for the feeling of safety provided by that guidance, and judging by many of the comments here, so have the people I’ve worked with over the years. You can be empathetic without being touchy-feely.

The report: Parker P. J. (2009) Professional Boundaries in Social Work: A Qualitative Study. London: Witness.

On the web at: http://www.gscc.org.uk/NR/rdonlyres/A6E02A21-9B89-4841-B243-F87AF3DFC6A7/0/Professional_Boundaries_in_Social_Work.pdf

Witness website: http://www.popan.org.uk/index.htm

The British Humanist Association (BHA) newsletter is suggesting its members go to meetings to reclaim dying from the hands of the religious. This is what they say:

The BHA is a member of the ‘Dying Matters Coalition’ – set up by the National Council for Palliative Care. The Dying Matters Coalition is responsible for promoting public debate about death and dying and for assisting the implementation of the Department of Health’s End of Life Care strategy…[local and national meetings are being organised]

The BHA urges all BHA members, if invited or approached about these meetings, to attend them if they can to express humanist perspectives on death, dying and life and to reclaim death and dying from the monopoly of the religious.

As I’ve said before in this blog, humanists seem to think that they have some special philosophy to promote. although most people just find them anti-religious, sometimes rabidly so. I think having a personal and shared philosophy by which to live your life (and therefore also to live your dying) is a good thing for most people.

I’m not clear what a humanist view of dying might be; apparently any member of the BHA can enlighten us. But since humanism generally emphasises the human capacity to manage the world with the rational use of human knowledge and skills, we need to be clear what we can control and what we can’t. Since we all die, we can’t control that. What we can control is how we die, by thinking about and planning for the kind of care and support we might need from our sister and brother human beings in our dying process. Dying is a social thing that we do in relationships, and when we’re dying it’s often too late to build the relationships that will support us.

So building human relationships is a good way of preparing to live our dying., and we don;t build relationships by rejecting other humans’ beliefs quite so aggressively as some secularists seem to believe is appropriate.

The Standards Board for England has published guidance on what is confidential for local councillors and the like, which is clear and succinct; other people may find it useful. It says:

Information is confidential:

* if it is about something serious and not trivial
* if the nature of the information is sensitive or personal, for example it is a business secret
* if it is information that you would expect people would want to be private
* if it was divulged in a way which implied it should be kept confidential
* if disclosing the information would be detrimental to the person who wishes to keep it confidential.

The good thing about this formulation is the emphasis on thinking what the person (a normal reasonable person) would want, and thinking about what they implied rather than specifically stated. Not news, but it sets it out well.

The full guidance on the web: http://www.standardsforengland.gov.uk/Guidance/TheCodeofConduct/Guidance/Quickguides/DisclosingConfidentialInformation/

The Standards Board sets standards for how local councillors and other elected/quango people should behave and investigates complaints: on the web: http://www.standardsforengland.gov.uk/

Their links site gives links to the Boards for the other countries: http://www.standardsforengland.gov.uk/aboutus/Usefullinks/

A House of Lords question yesterday on hydration, which shows the continuing drip, drip of Parliamentarians keeping on about rights to be kept alive – many people, particularly Catholics and Muslims, feel quite strongly that keeping on giving liquids is an important signal that a healthcare provider is committed to maintaining life rather than prepared to assist with death. As the answer makes clear, the medical view is that this is not the issue; that hydration is a ‘treatment’ that doctors cannot ethically give if it is medically inappropriate. This is something that needs a lot of careful explanation, and social workers need to be able to answer people’s questions about it, as well as other people who are helping people in healthcare.
Health: Hydration Question
Asked by Lord Patten

To ask Her Majesty’s Government whether patients entering NHS hospitals can request that their hydration is not stopped by doctors, nurses or other healthcare professions; and, if so, how. [HL5496]

Baroness Thornton: Yes. They may make their request in any manner they wish. However, clinicians cannot be compelled to provide the particular treatment requested. In deciding upon such a request from a patient, healthcare professionals may need to make a distinction between requests for fluids to keep the patient comfortable and hydration for a purpose that they consider to be “clinically unnecessary, futile, or inappropriate”.1

Note:

1 Paragraph 9.5 of the Mental Capacity Act 2005: Code of Practice

See it on the internet: http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/91020w0001.htm#column_WA60