Back from an interesting conference last Friday run by the University of East Anglia and the journal Ethics and Social Welfare on Confidentiality and Collaboration. Some very thoughtful contributions from experienced people mainly from safeguarding. Of course, the worry in that field of practice is that people’s professional rules about confidentiality prevents them sharing concerns about children and vulnerable adults at risk of abuse and neglect. But the law and all professional codes of ethics and practice require disclosure of concerns to colleagues to prevent offences and risk to others. This is really not difficult. Is someone at risk? Then disclose your concerns; at least at the outset we are only talking about conversations with professional colleagues who have the same objectives of public safety and concern for the people we are trying to help.

However, my view of this emphasises the importance of ‘informed consent’ as the answer to many confidentiality problems. One contributor was right in saying that I think informed consent should be threaded through our practice; I thought this was a nice concept. After all, it is contained in most social work codes of ethics, but I don’t think it is emphasised enough in practice. See my Humanistic Social Work: Core Principles in Practice, (Palgrave Macmillan, UK; Lyceum, USA). Chapter 2 promotes informed consent as an important way of offering accountability to service users and professional colleagues as well as to agencies.

For Humanistic Social Work in the UK and Europe: http://www.palgrave.com/products/title.aspx?pid=497063

For Humanistic Social Work in the US: http://lyceumbooks.com/HumanisticSocialWork.htm

(You get some free chapter downloads from the US site).

A local newspaper reports on compensation for people with learning disabilities cared for by a Cornwall healthcare trust: £6.5m for the institutional abuse they suffered, added to £1.47m they were awarded a while ago because the Trust (strange word for it in the circumstances) misspent their personal money on its own activities. Things are better in those services after five years, say the Trust, and the deal means that it won’t go to a big trial which would cause further delays. However, you still have to ask why it has taken so long to come up with compensation and why it was not obvious immediately that the people concerned were being mistreated and cheated and therefore that such costs accumulated.

What is the moral compass of people who are working in care services? Why does it so often seem to require scandals, inquiries and compensation to lead to improvements and change? A generation or two ago, there were many scandals about ill-treatment in long-stay hospitals, leading to a development in community care. A while later, there were scandals about people not being properly cared for in the community. It seems that wherever vulnerable people are being cared for, abuse arises.

Does vulnerability in people always lead to their exploitation? Perhaps not inevitably, because my experience in social work is that many people care amazingly well and selflessly for their family and friends. But it seems that some abuse will always arise, because there is a long-term history of abuse by parents and carers. Does having care services always mean a proportion of people will be abused? If it seems so, what can we say about human beings? Can we assume that caring is integral to humanity? The example of the development of hospices and more recently trying to improve end-of-life care perhaps suggests that it is. But it seems to be a constant struggle to preserve caring for people when they are vulnerable, so is exploitation of vulnerability also a commonplace characteristic of humanity? More so than caring?

I suppose many religions have always said that achieving good is always a struggle for human beings individually and collectively. Why is that? And if it is true, how should we structure caring services to deal with that?

The newspaper story: http://www.thisiscornwall.co.uk/NHS-abuse-victims-win-pound-6-5million-pay/story-13342698-detail/story.html

The final judgment has not been published in the Condliff case: this is the man whose PCT refused to let him have a gastric bypass, because he did not meet their standard criteria. He argued the human rights case of respect for his family and private life. The Court of Appeal agreed that it was clear that Mr Condliff’s family life was being adversely affected. The PCT’s IFR policy set the rules for making decisions in exceptional circumstances, but it did not allow non-clinical or social factors to be used. Social factors included ‘age, gender, ethnicity, employment status, parental status, marital status, religious/cultural factors’.

What the PCT was doing here was trying to be non-discriminatory in making its decisions. Therefore the court decided that Article 8 rights do not confer a right to have social factors wider than the directly relevant medical factors taken into account in service provision decisions.

Of course, it might be different in social services cases, where the whole raison d’être of funding decisions is social concerns. But it does suggest that social workers should focus on using their advocacy arguments with sympathetic professional colleagues, rather than trying to go to law.

But is this reasonable? Surely all decisions made by official bodies should properly take into account social factors, otherwise we cannot respond to inequalities.

Some more details at: http://www.lexology.com/library/detail.aspx?g=c73f5fe6-6952-45af-a4a9-baf5cbde2040&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-08-12&utm_term=

I reprint the following post from one of my other blogs (http://intsw.blogspot.com) which comments on social work sisues as they come up round the world. This has relevance to palliative care, not least because many palliative care practitioners do their work because of some religious commitment. There are also some palliative care providers who are based in particular religions. All hospices are enjoined by quality regulators to accept and implement equalities policies: so would a Catholic hospice say they can’t continue to provide services because they are required to provide them equally to gay and lesbian people as to people in heterosexual relationships? I don’t hear that they are doing so. Most hospices are open to all faiths and beliefs as a matter of principle.

Does all practice in a religious social work agency have to reflect that religion?

An American Catholic archbishop has made a speech that raises issues that should be considered by Catholic social work agencies, agencies and social work practitioners with other religious or denominational commitments and anyone who is thinking about: ‘what is the nature of social work’?

The main point he is making is that if you are going to call yourself a Catholic social agency or Catholic social worker your practice has to reflect and espouse your Catholic beliefs. Otherwise stop calling yourself a Catholic.

I think there are some problems with this point of view. To start with, I know some Catholic agencies that say: ‘we are Catholics providing services for everyone’. I remember Catholic Social Services in Liverpool, when I was involved with them as saying this: I don’t know what their policy is now. I also remember some children that I was responsible on behalf of local authority who were ‘in care’ (being ‘looked after’ in current jargon) in a children’s home run by nuns from a Catholic children’s agency; again, Catholics helping children in general rather than just Catholic children.

There are many care and aid agencies that operate with wider communities in this way. If they are going to do social work, they will have to accept different denominational and cultural beliefs and values and behave in a neutral way about these; thus not including their Catholic emphasis in everything that they do. The aim of a social agency is not to be ‘useful to the Gospel’ as the Archbishop puts it, in this way. They are useful to the Gospel by demonstrating that Christians care about everyone, whoever they are.

Archbishop Chaput’s point, though, is a bit different. He is commenting on a situation that we have also experienced in the UK, and will probably be a worldwide issue. That is, if equalities legislation says you cannot discriminate against gay and lesbian people in an adoption and fostering service, you shouldn’t run an adoption  and fostering service.

There is a practical problem here: how far does a Catholic go? Do Catholic social workers or agencies have nothing to do with a child care system that accepts decision-making on these grounds that are so anti-Catholic. In that case, Catholic people rule themselves out of engagement with increasingly wide swathes of social provision. Or do they accept that some of it goes on, but avoid direct involvement with it. You can almost see the Catholic working in a school, jumping back faced with a child of gay adoptive parents saying: ‘Ugh, no! We cannot teach that person, they are contaminated’. Well no, most Catholics I know and most Christians, maintain a concern for others and do their job with others, even though they may not like the social trends reflected in some of the things that happen. So a Catholic agency or a Catholic social worker should not be saying: ‘we don’t go there’.

The Archbishop is quoted as saying: ‘Catholic ministries “have the duty to faithfully embody Catholic beliefs on marriage, the family, social justice, sexuality, abortion and other important issues. And if the state refuses to allow those Catholic ministries to be faithful in their services through legal or financial bullying,” he added, “then as a matter of integrity, they should end their services.”

There’s a broader ethical point: if you agree to provide services to the public, you have to accept that the society in which that public lives may not agree with you about many of the things you believe, and a public service means an equal service for all the public, not the ones you happen to agree with. If they don’t agree, and the law, which enacts the general settlement in a society about an issue, supports them, a Christian should not just take their bat and ball home. To me, then, this stance is not Christian, and so therefore cannot be very Catholic.

More important, it is not and can never be social work. The whole point about social work is that it is concerned with achieving more solidarity and resilience in social relationships among all peoples. An agency or a practitioner that says: ‘We don’t do these kinds of social relationships’ cannot be a social work agency or practitioner because their social preferences detract from general social engagement.

Of course, any agency can decide on an admissions policy that limits the range of people and issues that that they deal with. I know several Jewish agencies that focus on providing services for Jewish people in their area only and several Muslim and Hindu agencies whose style, presentation and policy means that they are only likely to attract clients from their particular community. but they don’t say: ‘We’re not going to have anything to do with the way in which most of society wants to play ball’. You’re cutting yourself off from that society, and with a good deal of arrogance too.

A bit of Christan humility means taking part in society, and not rejecting fundamental principles about how that society is run, such as equality with people who you don’t like and don’t agree with. I don’t want to see Christians of any kind (or any other religion) cutting themselves off in this kind of way. What does a Catholic social worker who is committed to equality and who wants to work in adoption and fostering, a vital and valued service, do? Catholic agencies are closed to them, does it mean all practice in this area is closed to them, too? I suppose the Archbishop would say that in their professional practice they are not pursuing a ‘Christian ministry’. Yes, but can’t a valuable social agency do the same thing?

The account of the speech by Archbishop Chaput: : http://www.catholicnewsagency.com/news/archbishop-chaput-warns-about-catholic-institutions-losing-religious-identity/

Of course, you can’t make rules against people behaving stupidly, but it seems surprising that most health and social care professionals would fail to be aware that this was a no-no, but apparently not, and the Information Commissioner has started getting strict about people breaching confidentiality. A legal report tells us about a fine for an employee of a private injury claims service who got his nurse girlfriend to give him names of patients who were recently injured – he followed them up to try to get personal injury claims. The nurse’s PCT found out about it when patients complained about being contacted. The report ends:

in a statement released by the ICO last week, the Information Commissioner Christopher Graham said that “the ICO will always pursue prosecutions where individuals breach both their duty of confidentiality and the Data Protection Act. Those whose responsibilities include the custodianship of sensitive personal data should take note.”

http://www.macroberts.com/content/content_1484.html#page=1

American palliative care and other websites are all of a flutter about a study that shows widespread disparities in end-of-life care across the US. Information about the study is on the Dartmouth Atlas website, and the picture is not unlike the map from the DH health atlas project I posted about last week: http://www.dartmouthatlas.org

There are various takes on this: for example the Wall Street Journal majors on variations in ‘aggressive’ medical treatment and efforts to get doctors to feel OK about not trying one more time. I know that many colleagues in UK palliative care will feel the same about some specialist cancer treatment centres; it’s also an issue in renal care.

One interesting American project is trying to help healthcare staff think about ‘closure’: http://www.closure.org

It has interesting ideas on ‘community conversations’. I think this is the right sort of approach. It is hard to make a ‘no-more-treatment’ decision when patients very much want to carry on, and it is not uncommon for relatives and patients to have conflicting views; even more difficult. Also problematic is the situation where acute care doctors fear they will be accused of assisted suicide if they do not treat aggressively.

But a lot of people do feel that they do not want, or cannot bear, yet another heavy treatment, and we should be careful to listen to this, although not give up if there genuinely is a real chance.

It all goes back to advance care planning. The community conversations approach means thinking early and widely among the networks supporting patients about what people really want, and helping families and communities to get behind patients’ views. These things really should not be thought about at the last minute.

Here are some of the American website comments:

Wall Street Journal (there are some very thoughtful reader comments to this report, including the fear of ‘death panels’, which seem to have infected the American psyche): http://blogs.wsj.com/health/2010/11/16/surprising-variations-in-end-of-life-care

A very good palliative care blog: http://palliativemedicine.blogspot.com/2010/12/staggering-gaps-in-late-life-care-makes.html

and my own blog on current policy, in which I make the point that social workers have a good record of working with patients and families to support them in making these sorts of decisions: http://malcolmpayne.amplify.com

And while I’m at it, the ‘essence of care’ document has very extensive use of the word ‘appropriate’, and so do many of the other practice guidelines I see. I’m not sure this is always appropriate.

Some of the nurses at St Christopher’s say that social workers use ‘appropriate’ as the adjective of choice, but what it means is they don’t have to make a choice of making a full and appropriate assessment.

Of course, in one way, asking whether something is appropriate for the life and circumstances of people we are working with is a nice flexible way of rolling up a whole range of factors that a professional should be taking into account in a particular situation. It indicates appropriate responsiveness to that individual person.

But what it also does is avoid expressing clearly and specifically what is best for this person in this situation. It also avoids saying what you think. The person you’re talking to can decide the extent to which something is appropriate; you don’t have to. In a professional context, where we’re supposed to be making decisions about what is appropriate, it allows us to duck below the parapet and allows us to avoid saying what we think is required; instead, we just say: do what you think is appropriate.

And incidentally, a thought from the beeravement conference, you’d almost think that psychological and social workerish people really love people to have a bad time emotionally. Why do we so need to use deficit psychospeak about people who are going through a perfectly normal social process like bereavement? Our loved one dies, we re-organise our relationships and feelings and adapt to a new way of life. Why do we have to be looking for distress, or in a recent document, ‘overwhelmed’, ‘vulnerable’ or ‘controlled’ behaviour in their psychological reaction. Why can’t we measure something positive like their adaptation to a new life?

Get rid of the deficit psychospeak.

To Dundee for the National Conference on Bereavement in a Healthcare Setting, where I was taking part in a panel discussion on assessing people for their bereavement needs. Of course there are lots of proformas for doing this, and some people think my views are a bit controversial.

Historically, in hospices, some sort of assessment has been done, often based on Colin Murray Parkes’s bereavement risk index. I have an aversion to saying that someone is at risk of anything like bereavement that is a perfectly natural social process, so bereavement risk is not my idea of an appropriate way of looking at it.

Other people agree, so recently, people have been talking about bereavement need, which I think is just as bad. When my granddaughter says: ‘Grandpa, I need an ice cream’, I wonder in what sense of ‘need’ this is. It’s different a doctor or social workers using their experience and the evidence in comparing you with other people and saying you need some specified kind of help. But deciding to assess a whole category of people for their needs smacks of unnecessary labelling, when we know that most people don’t need or want bereavement help other than support from their family and friends.

Also, I know and understand that caring nurses and doctors see someone very distressed when their loved one is dying and want to make sure they’re all right, but they are seeing them at a very difficult time and how they are behaving is probably untypical of how they are reacting to their bereavement. They might be well controlled, so you wrongly think they’re OK, or all in pieces so you wrongly think they’re not OK. Looking at them at the time of death is a red herring, so getting nurses to assess them or provide information at the time of death is very likely to be misleading. It only makes the nurses and doctors feel better; it doesn’t help a bereavement service to decide whom to help, except in a very few cases, and you can ask for permission to refer them then.

Thinking about it, what right have we to intervene anyway? The patient is the one who died, so who gave informed consent for a psycho-social referral of a carer or family member to the bereavement service? And how can you be sure that you’ve picked up the distant members of the family who might be distressed but the hospital never met. And if we’re collecting up information about potentially in need carers from the patient’s case record, we’re processing information from this record to create a new record about someone else, without their permission, without them even being a patient, and, in most hospital situations, we’re also passing it on to an outside service like Cruse bereavement counselling or some other local organisation. This is processing personal data in a way that is probably contrary to the Data Protection Act.

So I say wait until someone comes forward to ask for help and assess them then, within a therapeutic relationship with the bereavement service worker. But what about potentially suicidal or very distressed people? If you really think they’re at risk, ask their permission to refer them.

And I think we should work on making a lot of people – the GP, the minister of religion, the lady in the post office, the milkman – bereavement-literate, so that they know what to say if someone is distressed by their bereavement, and can refer them to a trusted service  in their locality. And of course that means we have to make sure there is a universal provision of a trusted bereavement service: we’re a long way away from that too.

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