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.

The Cochrane Collaboration published two new papers last month that might be of interest. Or they might not of course because the CochCollab publishes reviews of evidence-based practice in healthcare, and they have such a limited view of evidence that most of what they publish has very little point. Hence these two: one is on whether end-of-life care pathways (like the Liverpool Care Pathway, which the Department of Health recommends) have generated any evidence to say it’s of any use. Similarly music therapy in palliative care. The answer in both cases is ‘no’.

What are we doing all this for then? you ask. Generalised organisational practices such as integratied care pathways involve so many factors that it’s hard to imagine any random controlled trials telling you anything useful about them. And music therapy or music activities are such a disparate range of activities that it’s hard to imagine…similarly. And again, since they are mainly concerned with whether these things have any effect on symptoms, physical or psychological, or vague concepts such as quality of life or potential harms they’re hardly likely to come up with any results.

Lets be clear; there are some aspects of healthcare, such a physical treatments, that have measurable effects on human beings that you can calibrate and you neeed to do it for safety and effectiveness. There are other aspects of healthcare that are about how you organise a fairly complicated service or some aspects of the care environment that might make people more comfortable and happy. These cannot and should not be measured in the same sort of way; their objectives are different. Whisper it gently, they are often about achieving such social objectives as a speedy, thoughtful and congenial response to people’s feelings about what’s happening to them.

This sort of pointless activity brings the whole research enterprise into disrepute. Healthcare research is just not asking the right questions about the appropriate care environments that give people dignity and a caring experience.

But if you must read these things:

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD008006/frame.html  (end-of-life care pathways).

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD007169/frame.html (music therapy).

Some pics of the new consultation rooms at St Christopher’s – part of my continuing series about the building updating. Our plan is to encourage more patients and carers to use the Anniversary Project open space as a base for coming into the hospice for a range of activties, including consultations with doctors, nurses, welfare officers, social workers and many other professionals. This reduces travel time in crowded London and means that more people can be helped with the same number of staff.

Therefore the environment of the consultation rooms is important. They have three elements: an office element, an examination room element and an interview element, as you can see from these pics of one room:

Although I’ve mentioned the proposed NHS constitution before (this is the proposal to turn targets into patients’ rights). Cynics say this was invented by Labour to force the Conservatives to be against patients’ rights by making it expensive and embarrassing to back away from the sorts of standards on waiting times that we have become used to over the past ten years or so.

One of the proposed rights is a ‘right to die at home’. This is not going to happen because it is set for 2013, by which time Labour will probably be out of office. The proposal is sensibly backed up by the development of advance care planning (see my resource document on this). The crucial bugbear, of course, is that when you give someone a ‘right to die at home’, you give family members and other carers the responsibility to stress themselves out coping with situations they should not have to cope with. The reality is that many people need to go into hospital for their own and their relatives’ security and peace of mind. The important thing to think about for most patients and their families is what is called ‘preferred place of care’. Where you die may be less important for most people than where you are cared for. But if you give people the right to be cared for where they want, you open our health and soical care budgets to a huge possible expenditure. Much easier for the politicians to get sentimental about where we die.

However, the document is right to say that if you are going to do more than just say the words that people should be able to die in their preferred place of care, then you have to have a whole range of good community services available in people’s homes. And as I never tire of saying, because people in palliative care think they own death, most people will not be getting the high standards of palliative home care, but a worried and hard-pressed district nurse and GP without perhaps the confidence or the time to do a good job.

Another issue is the reality that patients and the people surrounding them might well not have recognised or been prepared to admit that the patient was dying, so they didn’t ask for the care that they really needed. Unlike palliative care, end-of-life care involves caring for people who have not had a clear diagnosis of a final disease like cancer, or the privilege of a careful assessment by someone who really knows and has taken the trouble to look at the patient in some detail, that they are reaching the ‘end-stage’ of something that may well be a lot vaguer. We run the risk of dying at home getting a bad name simply because people are not used to, don’t talk about and don’t always recognise dying when it’s happening at the end of a long phase of increasing frailty.

You can see the consultation on the NHS Constitution, which includes (fairly brief) discussion of the right to die at home at:

http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_108035.pdf

The fact that it’s brief probably means that it’s fairly ill-thought out too. There’s not a lot of sign that detailed thinking has gone into what they are really aiming at, compared with the fairly extensive material on waiting lists. What its inclusion points up, though, is the reality that end of life care is galumphing up the agenda as a political issue. For years politicians and community representatives have worried about waiting lists; perhaps now they are going to worry more about place of death. That’s probably good.

I’ve been enjoying the latest edition of Eurohealth, the journal of the European Observatory on Health Systems etc based at the LSE. It has a whole load of papers on health inequalities. One paper makes the point that we should be looking at non-death health outcomes, instaead of simply worrying about how obesity or smoking leads to early death. This would open the door to trying to look at some social measures, not to mention ideas like happiness.

One of the papers looks at how welfare policies might contribute to reducing health inequalities. An interesting series of tables shows how countries vary on the generosity of family policies (the Nordics come out top of course, with the UK fairly low down). But the UK has very low child injuries although it is somewhat above the line child poverty and infant mortality. Perhaps I’m wrong the moan about rabid press coverage of child abuse scandals, because this might suggest that the UK level of anxiety about child deaths and injuries may make a difference to our children. Perhaps the Daily Mail needs to pay attention to the US and New Zealand, which are well above the line. Or perhaps it needs to focus on ill-treatemtn of older people, and it might have the desired effect.

See it on the web: http://www.euro.who.int/Document/Obs/Eurohealth15_3.pdf

The ‘Health Herald’, a nursing blog, tells us its favourite hospice/older person blogs, putting this blog bizarrely into its pain management category – if there’s one thing I don’t rant on about it’s pain management.

I now feel a duty to comply (you didn’t know that about me did you?) So: Except to say that good pain and symptom management is an essential part of pallaitiev care, but mainly so that people can continue to lead interesting lives that allow them to complete the social tasks they need to achieve in the life that remains to them.

The listing at: http://nursesassistant.org/2010/top-50-hospice-care-blogs/

The Land Registry sent me a pile of leaflets pointing out that older people who live away from their property (for example in a care home) run the risk of fraudsters taking over the title of their home without their knowledge and selling it on. You have to make sure the register is up-to-date and they know how to contact you if you live somewhere else. Otherwise, presumably, someone claiming to have taken over your house can simply pick up mail from the Land Registry and you would never know.

Contact them on: http://www.landregistry.gov.uk/ to get leaflets yourself; currently this issue is on their front page, but there’s loads of other property info there.

An article in Guardian Public says ‘transformation’ directors (or ‘strategic managers’) are being appointed ion the public sector, and the NHS, in order to make sure that programmes to save costs are implemented to target.

Silly me. I thought transformation meant introducing innovations effectively. However, the statements from public sector great and good take it for granted that it’s about saving money.

See the article at: http://www.guardianpublic.co.uk/

The question mark says it all. Phil No-hope (the minster for all things social care) said on 19^th January that the government, in response to the consultation on the review of the No Secrets guidance on adult safeguarding, would legislate. But it is only legislation to formalise a bureaucracy that is mostly there anyway: they want safeguarding adults panels, like safeguarding children panels, in every area. Most places have these, so it’s a bit pointless. He also said they would issue new and improved guidance. It’s 10 years now since the last major piece of guidance, so this is not surprising.

I imagine nothing will happen before the election and that the other lot, if they get in, will not be bothering. This is mainly because the media frenzy and the political wibble-wobbles don’t happen when older people are biffed, neglected or stolen from by their relatives or carers; only when it’s children.

See the announcement and connect with the documents on: http://www.dh.gov.uk/en/News/Recentstories/DH_111276

A further twist in the saga of NHS charities; the government is delaying a new accounting standard that means that the assets of NHS charities where an NHS body is the sole trustee have to be included in the assets of the NHS body. People fear this will mean that the assets of NHS bodies will be reduced because of their charitable assets, when the charities should not be supporting the public purse. This mainly affects the big old teaching hospitals that had charities which carried on after the NHS was founded (some of them are very rich), but there are other charities set up for various purposes. Phil No-hope, the care minister, claims this is all about transparency. The Charities Commission says, apparently ,that they would like to see such bodies appoint more independent trustees, but not just so that they can get round these new accounting rules.

I worry about these bodies. I can see that leftovers of the pre-NHS hospital charities needed to continue with a charitable existence, and, amazingly to me, some people apparently leave legacies to NHS hospitals. You have to ask why – these are public bodies. The problem is that these large extra funds support the aims of some already privileged NHS bodies to gain even more privilege, and ignore participative planning and consultation with the people using their services and their local communities. In particular, it encourages expenditure in already rich parts of the country, mainly on hospitals or in the interest of maintaining their NHS hegemony. Charitable monies should be redirected towards community services and not to the interests or already big rich hospitals.

You can see the news report on: http://www.thirdsector.co.uk/News/DailyBulletin/978963/Delay-sought-new-rules-NHS-accounts/60B8C11D571BD969193A7C2FF064BE1D/?DCMP=EMC-DailyBulletin