This post is an evaluation of YouTube vieos on palliative care and palliative care social work. It briefly tells you how to find YouTube, assuming that there will be some of my readers who have never done that. There is then some comment on the top videos the week I did these searches, and this is followed by some overall comment, which you could sum up as ‘could do better’.

Finally there a sort of appendix which tells you how to use the YouTube video viewer, again assuming I might have some readers who have never used one of these things.

People who don’t use YouTube probably just know it as that controversial site that teenagers are supposed to look at to find unsuitable videos of unknown rock bands, which then shoot to popularity, or films uploaded by oppressed groups in countries who don’t have much access to the internet.

In fact there is a very wide range of material uploaded, including stuff on medicine and social work, and a lot of members of the public might well look there for information about palliative care, and might be more used to visual presentations than reading documents or leaflets. Some alive organisations have obviously realised that, because there are a lot of ‘what is palliative care?’ type presentations. Obviously there aren’t any alive organisations in palliative care social work, because I didn’t find much about that.

By the way, St Christopher’s does not allow staff or me to view YouTube at work – this is to stop us wasting our time and Hospice resources watching rock videos at work. So I had to do this at home. You might find your workplace does the same.

Using YouTube

If you’ve never used YouTube, it’s a simple process. Search on your browser for the site. As with a lot of internet sites, it’s about being up to the minute, so it shows you a list of recently uploaded stuff. If you use the YouTube search engine to search the site, you simply put in “palliative care” or any topic you fancy, and it comes up with the most recently uploaded stuff with that computer tag. When I did this for “palliative care” this week I’ve noted the first ten things I got; there were only three for “palliative care” and “social work”. It would change over time, although my experience is that it hasn’t changed all that much over several weeks; palliative care obviously isn’t the hot topic among the tuberati.

Palliative care search comes first, then “palliative care” “social work”.

The Palliative Care search

First up came a German film that looked very hospital, but I couldn’t understand it, so I’ve left that one out.

Student Volunteers in Palliative Care in Kerala

http://www.youtube.com/watch?v=gfdUKcH-ZPg

This is an Indian man talking briefly about how wonderful it is to volunteer in palliative care in Kerala, India. It’s not clear what they do, how they got involved or anything practically useful, so it’s a bit of a pointless puff for volunteering in principle.

Cancer and Palliative Care Video.mp4

http://www.youtube.com/watch?v=KSVljzqeKBA

A UK video showing GPs how to find things about palliative care on the internet; it shows you how to click on various sites. Boring presentation but useful, I learned some things from it.

Palliative Care: What is it and who is it for?

http://www.youtube.com/watch?v=ttW8pxF__g4

This is an American film, presenting palliative care as something that hospitals do, a medical treatment for pain and other symptom relief done in hospitals alongside curative treatment; it does mention social workers, but all the speakers are doctors, even the patient experience. There’s a mixture of people talking to camera and pretty pictures.

Pain and Palliative Care: What the Future Holds

http://www.youtube.com/watch?v=Ai-MbsANxHY

A film of an American lecture from a university somewhere (they tell you the initials of the University at the beginning, obviously the rest of the world will know what it is) by Katherine Foley, an eminent American palliative care physician. It was obviously such an important lecture that she had a hair styling for the occasion: it doesn’t move. Neither does she, much, she was obviously told to stay in view of the camera. She reviews the progress of palliative care and has an international focus. You see the PowerPoints filmed as she talks, which are not easy to see in this format and some of them you can’t read. The presentation is very comprehensive, but very professional i.e. boring. It goes on for nearly an hour, so I haven’t watched the whole thing, and therefore I don’t know if it mentions social work. She does talk about palliative care as a human right.

Canadian Virtual Hospice Palliative Care Video

http://www.youtube.com/watch?v=ZWLoQkJD0WA

A 7 minute film about a Canadian information website, introduced by Chochinov, a well-known beardy in supportive care; it describes the site – you can submit questions for an expert to answer, and it has discussion bulletin boards and the usual information. There is an affecting account by the adult daughter of a cancer patient. Nice film, lots of variety.

Right to Relief: Palliative Care in India

http://www.youtube.com/watch?v=0_FK-5aMkEo

A 4-minute Human Rights Watch video complaining about how the Indian government and most of Indian medicine does not make pain relief through cheap morphine available. Good photos and video and presents a range of settings, including home care, so it gives a picture of what is probably quite a good Indian palliative care service. Presents the international human rights issue of availability of morphine succinctly and caringly.

What Is Palliative Care? – Dr. John Mulder

http://www.youtube.com/watch?v=QIF99iKnVcU

This American (?) doctor for a private sector health service describes palliative care as a consultative service for the longterm quality of life consequences of being treated for a life-limiting illness. He’s interviewed by an extremely thin, blonde, glossy woman in red, and in the 2-and-a-half minutes it does mention bringing in social workers. Talking heads stuff, presumably to advertise their services.

What is Palliative Care?

http://www.youtube.com/watch?v=Uy5PDoPfmWQ

Brief film, Diane E. Meier, Director of the American Center to Advance Palliative Care, talking about the kind of patients who might be helped by palliative care. Talking head stuff again. Going down the list further, there are several short films from the Center of the same sort and format, all about the American system as though the rest of the world does not exist, so it makes it peculiarly irrelevant.

The social work and palliative care search

Then I searched for “palliative care” and “social work”. This is what I got:

Social Work and Health Palliative Care – Care Accolades 2009 finalist

This is a one and a half minute film about Angus social work department (they’re not called social services or social care in Scotland, but that doesn’t mean that everyone involved are social workers). They obviously nearly won the prize for this competition for good services. The scheme is about generalist palliative care: it refers to a two-day training the trainers project to give training to it-wasn’t-clear-who, and they gave training to 122 (count them) front-line carers, who then said they were much more confident with advance care planning and talking about death and dying, presumably either with people in care homes or receiving community care services, it’s not clear. Professional film, but not really much information, and as it’s a prize competition, it’s not really a critical discussion of the issues.

Hospice San Miguel

http://www.youtube.com/watch?v=JFWNL9z8_wk

A five and a half minute ‘promo trailer’ for this hospice – it turns out it’s in Mexico, but you wait a long time to find that out, and it rather feels as though it’s an American city with a lot of Latino/a people. They would clearly like to influence American palliative care with their experience. Don’t be put off by the start, which is in Spanish, because most of it’s in English and there are subtitles when people speak Spanish.

It seems to be an American neo-colonialist project run by Americans for Mexican people (although the volunteer coordinator of the bereavement service may be British) and the comparisons made are with the American medicare system for funding hospice care; they claim they are going to show America how to be more flexible. It seems this is just about not having government interference. It’s not clear whether there is an in-patient unit or whether it’s a community service only, since they don’t actually say what they do, just tell you how wonderful it is. There is some patient and carer ‘testimonial’. There is a strong focus on bereavement groups and family work, which is achieved by getting social workers and volunteers in early (more or less the same thing as far as the speaker is concerned – it’s not clear who most of the speakers are, but they present as very do-gooding). The message of the film is mainly: ‘don’t be frightened of hospices, come early for care’. We can all appreciate the need for this, and it is well-filmed and produced.

End of Life Care Panel (10/30/09)

http://www.youtube.com/watch?v=t7g1WO68KYE

This is a panel of four people, one of whom is a social worker, answering questions; she talks well from experience about working with people with a different ethnic background. It looks as though it’s a public event by the Commonwealth Club of California explaining palliative care to the masses (well, poorly informed professionals really, I would guess; I suppose they are the masses). It’s led off by an extremely boring (male) medical professor with a grating voice and a very long job title saying how other medical specialities need palliative care. But it (and he) get better; there’s a very warm and practical nurse, a glossy, severe lawyer and a frizzy social worker. Most of the discussion is about assisted dying and advance care planning. It’s very long, more than an hour, and a very boring straight filming, with the occasional mid-shot of a panel sitting crammed unmoving behind a small table. I haven’t watched it all.

The Evaluation

There is some material on palliative care on YouTube, but not a lot and it’s mainly talking heads or educational. It’s mainly American, so there’s an opportunity for British organisations or individuals or people in other countries to make a good impact. In fact British viewers are likely to be seriously misinformed by the American stuff. And the American stuff is very American; there’s no attempt at international coverage in the American material, except in the lecture by Katherine Foley.

However, her lecture and the panel discussion from California illustrate the other problem with academic material on YouTube, they’re very long, very static and very boring. I cannot imagine anyone being prepared to sit through the whole thing. However, there is useful material in this stuff, but it should be carefully edited. At least cut out the doctor moderator with the two-minute job title (I’m exaggerating but not by much). Academic presentation like this also needs to be interspersed with appropriate illustration. The lecture had very interesting material, but it needed to be animated and shown properly. This requires work, guys. Not just slapping it on the internet.

You can put up with talking heads for a minute or two but not much more than that. Come on, we’ve seen the BBC or CNN, we know what it should be like.

Another weakness of some of the material is that it is promotional and it really does not make clear what it is promoting, so you don’t get to know what the volunteers do, just that (for a couple of minutes – it was so repetitive I almost switched off but I couldn’t believe he could say so little again and again) it’s wonderful that it’s there. It’s even easier to switch onto the next thing on the internet than it is with a television set or radio, so your material really has to be focused.

On the other hand, some of the short films which wanted to make just one point with interesting film or photos and lots of variety are really informative. Going for that makes a good impact. Less is more.

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.

David Cameron the Conservative opposition party leader, made a speech last week on the ‘Big society’, which put forward his thinking on poverty and social intervention generally. As always, they’re against the state doing it, and many people can accept that there is a considerable degree of state failure in social provision. The problem for the Conservatives is that there’s a high degree of market failure in social provision as well. Often everyone accepts that the market is not the place for social interventions, or they have to set up some convoluted quasi-market system that is not really a market, and institutionalises complex state controls over voluntary action.

Voluntary organisations may be wonderful, but to rely on voluntary organisations to deliver wide-scale state services is inappropriate; it twists voluntary action by making it involuntary.

You can see this in the hospice movement. Hospices in the UK are mainly in the voluntary sector because St Christopher’s was originally a demonstration of what was possible in care for the dying and their families at a time when not a lot was done. Now Conservatives routinely say how wonderful voluntary hospices are as an example of how lots of other services should be run. But proper care for dying people and their families is a responsibility of society where government should take a lead and make sure that a high standard of care is widely available. They should not be pleased that they can offload that responsibility because enough sentimental and well-off people will make donations to support it,

Cameron’s speech on the web: http://www.conservatives.com/News/Speeches/2009/10/David_Cameron_The_Big_Society.aspx

The Touchstone blog by Richard Exell has a useful discussion of the speech, with references to many of the past Conservative documents on the topic that many people will not be aware of and rehearses the arguments against it; however, be aware that Touchstone is a TUC (ie trade union) blog:

http://www.touchstoneblog.org.uk/2009/11/david-cameron%E2%80%99s-big-society-speech/

It seems that the Department of Health and the Charities Commission are having a row about NHS charities. A new international accounting standard for public bodies requires the accounts to be consolidated with the NHS accounts, whereas the Charities Commission thinks a charity’s accounts should never be part of a public body’s accounts.

Web information on the issue:

http://www.thirdsector.co.uk/News/DailyBulletin/948049/Charity-Commission-takes-stand-NHS-charities-accounts/63AA077707931EC526211C5DD9F168F7/?DCMP=EMC-DailyBulletin

Trust them to have an argument about the pointless end of the issue. This is a sign that NHS (and therefore public) bodies are controlling charities. You have to ask why? I realise that the history of this is that many of these are leftovers from when the healthcare system was turned from a largely charitable system to a public system (only 60 years ago, so of course we haven’t dealt with the problem yet). People gave charitable monies to (mainly) hospitals, so hospitals hung onto it; it gives them a bit of freedom of manoeuvre. What this means is that the historic NHS trusts, now mainly foundation trusts, have extra cash to do what they like with, instead of participating properly in local planning. This also gives an advantage to the richly endowed hospitals, in stead of spreading money around the country in accordance with needs.

What has this to do with social care and palliative care. It means that some hospitals can promote their internal palliative care without any concern for the planning of other local services, and advantage people where there is a rich inheritance when others might need it more. It’s time this source of inequality was ended and these charities floated off to be truly independent.

Another pic of the new St Christopher’s. You may think this is just like a commercial gym, and that’s the point of it. Patients visitng the new Anniversary Centre can book into this or take part in a regular physiotherapy programme; the fitter you are, the more you can combat your illness and its effects on you.

The EU has published a strategy for global health policy, with  focus on maternal and child care, responding to climate change and talking about support for issues such as malaria prevention. Obviously major problems of ill-health and health inequalities remain. Buit this is very much a policy about achieving the Millennium Development Goals, and ignores that element of health and social care which is about care, not just about widespread changes will prevent or treat diease, which tend to focsu on the young. Inequalities affecting older peopleand dying people because they are not our future are ageist and in the end uncaring.

On the web: http://ec.europa.eu/development/icenter/files/europa_only/EU_role_global_health_issue_paper_en.pdf

The NHS Evidence Update on cancer rates has been published, and gives you an idea of the accumulated evidsence on what kinds of cancer differentially affect particular minority ethnic groups. It says:

Overall cancer incidence was found to be lower in South Asian, Chinese and mixed race groups than whites.  However, some important specific differences were also identified:

• Black males of all ages were more likely to have a diagnosis of prostate cancer than white males. (Age standardised Relative Risk (RR) between 1.26 and 2.48, based on different assumptions regarding patients with unknown ethnicity)

• Black males and black females had higher rates of cancers o f the stomach. (RR 1.14 – 1.74)
• Black males and black females had a higher rate of liver cancer than white males and females. (RR 1.47 – 2.67)
• Black males and black females had a higher rate of myeloma than white males and females. (RR 1.79 – 2.80)
• Black females aged 65 and over were at a higher risk of cervical cancer than white females of the same age. (RR 1.13 – 2.50)
• South Asian men and women had a higher rate of liver cancer than white males and females. (RR 1.47 – 2.43)
• South Asian females 65 and over had an increased risk of cancer of the mouth (RR 1.18 – 1.97), whereas South Asian men may have a lower risk of getting cancer of the mouth than white men.
• South Asian females aged 65 and over had a higher risk of cervical cancer than white females. (RR 1.15 – 2.29)

Worth a look at the whole thing and links to the evidence:

http://www.library.nhs.uk/ETHNICITY/ViewResource.aspx?resID=326764&tabID=290

Who rescues the rescuers, I ask? Sitting at home today, having decided it’s impossible to get to work in snow which is apparently the worst in London for 19 years, I see an RAC van stuck in the road outside my window, accompanied by another RAC van that has come to rescue it, only also to get stuck. I’ve often been caused to wonder who deals with the social workers who beat their children or neglect their elders. Yesterday, a nursing colleague who is in hospital has been plied with requests by her consultant to have a private room, on the grounds that she should have the privileges of a senior NHS staff member. Equality of access to health care?