New URL for the National Audit Office (NAO) Report on end of life care
If you’re looking for the NAO report its new URL is http://www.nao.org.uk/publications/0708/end_of_life_care.asp
Archive for January, 2009
More home care in Poland?
(Written 16th January, added later because I am away)
To Olesno (http://www.olesno.pl/), a country town some way from Opole, to give a talk on the principles of hospice work to the university of the third age group which is just starting up, part of a national project that I discover the Dean is playing a leading role in, and that Opole University is responsible for in this area. It’s supported by a cheery and generous mayor and the meeting takes place in a rather impressive council chamber in the town hall. There’s a bit too much talk about keeping the mind active, and I emphasise what I understand to be the other side of university of the third age, which is about teaching each other and using the accumulated life skills and learning for the benefit of the community. It’s too easy to see older people as the objects of help, whereas all the people present seemed very active and intellectually critical. Critical social work with older people needs to emphasise what they have and can contribute, rather than their deficits (if any, I couldn’t see a lot). I wonder about a talk on palliative care for an older age group for the same reason, but they were interested, and I think it’s ‘professor from afar’ (one is accustomed to being unnoticed at home) and a topic of general interest rather than feeling that they’re going to need it yet. The mayor and another member of the audience talk afterwards over kawę and herbatę (coffee and tea; I’m getting into basic Polish) about how desirable some sort of service like this would be, if the resources were there; I emphasise how much can be offered in a home care service.
I also talk to some young people at the local college about social work; this is marketing for the university another professor from afar thing, and we go via the tourism sight of the area, a huge ancient church built of wood (the area is heavily afforested). Claimed to be the largest wood church in the world; it’s certainly the largest I have seen, even though I’ve visited many wood churches in the Nordic countries.
Home care, in-patients, assisted dying
(written 15th January, added later because I am away)
In Poland, at Opole University, in the south, my visiting professorship again. It is exam time, so there is the air of anxiety and tension characteristic of any university when the pressure is on and the nights are noticeably less rowdy. I sign lots of record books of students, some of whom I recognise, who claim to have come to my talks in the autumn.
To the PhD students, I do a talk on assisted dying; this sparks a spirited debate. One candidate (as PhD students are known) works in a hospital that cares for children with learning and other major disabilities, and feels strongly that as medicine moves on many things become possible. My aim here is to get a differentiated view about what many people see as euthanasia; for example the medical decision to give pain relief that is adequate even though, being strong enough, it might shorten life. There is appreciation of one of the cases of a young man with extreme disability who nevertheless expressed great pleasure in the things he is able to do, living until the moment he dies. Another candidate talks about not being able to say goodbye to her grandfather as a child, because he was in too much distressing pain, and there is discussion about the importance of good pain relief. The area has home palliative care services and has a hospice half-built, which has run out of money. I emphasise how much can be done with home care.
It’s always possible to wonder whether St Christopher’s would have been an in-patient unit when it was built in the 1960s if home care had been more accepted at the time. I think it would; it’s easier to demonstrate a new idea in a place rather than in a diffuse service, and home care followed on immediately afterwards. I think also that some beds a vital as a fallback, particularly where St Christopher’s is, with all the single person households and small apartments, where it’s very hard to provide adequately for people with major disabilities or at risk of, for example, heavy bleeding.
I follow up with the PhD students with a discussion of bringing older and younger people together using the DVD about the St Christopher’s school and youth project (see post 12/12/08), emphasising how careful the planning has to be to get community projects like this to produce useful outcomes.
Pics of the St Christopher’s building works, in solidarity with colleagues who are working in difficult conditions, so that things can be better in the future. Final tarmacing, showing the beginnings of change to the entrance.
Poverty and exclusion, especially among older people
The annual Joseph Rowntree publication on poverty and social exclusion has come out, with as usual interesting statistics on health inequalities, measured as usual by premature deaths.
One interesting feature of the information about older people shows that fewer older people are helped to live at home in rural areas than urban areas. Associated with this, perhaps, older people are disadvantaged in using transport; particularly if they are single tey don’t get to make so many journeys if they don’t have a car.
Palmer,G, MacInnes, T. and Kenway P. (2008) Monitoring poverty and social exclusion 2008 York: Joseph Rowntree Foundation.
See it at: http://www.jrf.org.uk/bookshop/eBooks/2315-society-poverty-exclusion.pdf
Religion, spiritual care, palliative care
The Department of Health guidance for healthcare organisations on religious belief includes sections on palliative and end of life care, an example of the clear differentiation of the two in the mind of whoever writes things for the DH. Interestingly, this comes from the equalities bit of DH, and is a sign of concern that both staffing and services should respect equalities in religion and belief. Nice to see the belief there, too, it’s not just about religion, but those that don’t indulge. This would not tell anyone involved with palliative care anything new, but useful to know it is there putting forward the importance of end-of-life care again.
The Liverpool Care Pathway gets wheeled out as a good practice example again. This causes me to wonder if anything new and imaginative happening in spiritual care.
Department of Health/ERHG (2009) Religion or belief: A practical guide for the NHS. London DH
Groupwork in palliative care
Two articles about St Christophers projects which have come out in journals that palliative care afficionados may not see. One is the account and evaluation of ‘Planning for Change’ seminars. These are education groups for patients and carers on financial problems they are likely to hit around death and bereavement. They thought they were great.
The other is a study we did on the groupwork in the day centre, which looks at how unstructured and structured groups contributed to the social objectives of the day centre.
All this is part of our ongoing attempt to say you should look at social aims as well as healthcare aims in a palliative care service.
Bechelet, L., Heal, R., Leam, C. and Payne, M. (2008) Empowering carers to reconstruct their finances. Practice 20(4): 223-34.
Payne, M., Hartley, N. and Heal, R. (2008) Social objectives of palliative day care groups. Groupwork. 18(1): 59-75.
Pics of the St Christopher’s building works, in solidarity with colleagues who are working in difficult conditions, so that things can be better in the future.
Tarmacing still.
Levels of social work
A correspondent mentions an article by people from Marie Curie producing a model of social work for use in palliative care settings. This mimics for social work the NICE analysis of levels of psychological care, which has led to so much resentment from social workers (because it assumes that social workers are low-grade psychological workers, when in reality their psychological work is integrated into a much broader conception of their role).
I tend to think that if someone has family problems, the social work approach of getting into the family and negotiating among them all is much better than the psychological approach of getting a focal client to deal with their emotions or cognitions so that they can problem-solve. The research on social work tends to show that being prepared to get involved is highly valued in a family rather than being an external therapist. It is also more highly valued in my experience by colleagues.
Marie Curie has a similar levels analysis for spiritual care which was were also taken up by NICE.
The new article produces a model of four levels of social work, although its second ‘level’ is more a different type of social care practice than a different level. I think the advanced level should explicitly mention child and adult safeguarding, which are crucial social work roles, as I and a commentator on this blog have mentioned, is a really important area of social work rather neglected in many hospices.
They are right to say that healthcare organisations tend to look at the psychological of psychosocial and have very little idea about the social; mainly I find healthcare people cannot conceive what the social might be, aside from families, which is perhaps why so many social workers have allowed themselves to be called family support workers. Also, I found when I did an analysis of recent research on staff stress on palliative care (for Mari Lloyd Williams’s book on psychosocial issues in palliative care), that this is mainly about nurses (inevitably, as the majority staff group) one of whose big stressors is family conflicts. Therefore, there is certainly a demand from colleagues to focus on families when there are problems.
However, I do have a problem about levels of social work (or any other professional group). For one thing, it tends to lead to an assumption that there are lower and higher workers, and I think that many different kinds of interpersonal relationship are achieved with patients and their families by different kinds of people. For example, I think day-to-day carers often get closer to older people, particularly if they are more of the same age and social background as the older person than a professional with all sorts of therapeutic skills. Then I think levels tends to lead to an assumption that work will be referred up the levels, but complex work is often mixed with simpler issues and many people are unhappy about being referred up once they have got to know someone who is caring for them day-to-day. So I think enhancing or supporting through consultation the capacity of the nurse or whoever is actually daily in contact with a patient or carer is often better than referral upwards. And I don’t like the elitist implications of levels. Looking at the American assumption that ‘clinical’ social workers need masters qualifications while the bachelors can do something less demeans the real importance to many clients and complexity of service provision, and supportive and practical work.
Hearn, F., Jackman, E., Lake,T., Popplestone-Helm, A, and Young, A. (2008) Re-emphasising the social side: anew model of care. European Journal of Palliative Care. 15(6): 276-8.
Finances and bereavement
A really nice and very comprehensive study of the financial consequences of a death in the family has come out from the Social Policy research Unit at the University of York. They did a survey and qualitative studies of the experiences of people coping with finances after a death in the family. It shows that a lot of commercial companies are not good at dealing with bereaved people, and financial issues are a real struggle for many people.
I wonder how many bereavement services would be able to respond to the following: …areas for useful exploration with some people might include constructs of the ‘economic personhood’ of the deceased person, and feelings about loss of breadwinner, home manager, gambler, debtor, profligate spender, careful budgeter, regular saver, or generous giver. Exploring feelings attached to stressors such as having to take on changed economic roles, might also be useful. Such discussions might identify financial issues where specialist advice from others might be appropriate, such as debt counselling and money advice, or reduction of fuel costs. Counsellors will want to be aware of any financial issues when people present symptoms or increased risk of complicated grief (page 168).
My sense of the focus of much bereavement counselling is not of concern for such issues; there is either a prctical response to financial difficulties, or a focus on the bereaved person’s emotions rather than the family socila realtionships and perceptions around finance. A useful thought, but there are many more in the report.
Corden, A, Hirst, M. and Nice, K. (2008). Financial Implications of Death of a Partner. Working Paper No ESRC 2288 12.08. York: Social Policy Research Unit, University of York.
Download it from: http://php.york.ac.uk/inst/spru/pubs/1148/
End of life care is not about palliative care
You’ll have gathered I’m clearing my December in-tray, because I’ve now got to the NCPC (National Council for Palliative Care) document published last November on the end of life strategy (for my own social-care oriented comment see 30th September 2008). This is a summary of the report, with some commentary about what the NCPC is going to do.
Looking behind the unexceptional material here, however, there is a very real problem. The whole point about end-of-life care, to me, is that we are at last going to work on helping people who are approaching the end of life in the most usual way, that is, they grow increasingly frail and increasingly unable to look after themselves. Palliative care, in contrast, is wholly concerned with people who have clear diagnosed and advanced illnesses.
An example is the five expert groups, which the NCPC document (£5 for six pages including three pointless pictures, one of them blown up to excess – they can only charge this because most people get it free), puffs as the centre of its ‘well-established policy group…that will enable this to happen’ (‘this’ is getting the policy implemented). These groups are illness-based, and so might be relevant to palliative care but cannot provide leadership in end-of-life care.
A-ha, but the answer to this is the older people group which is, as the policy wonks would say, ‘cross-cutting’ (this means it has an interest in all the other things as well; they almost say this but the elegant author was unable quite to bring him/herself to do it and so is self-defining as a not-policy-wonk). But here they are still stuck in the medical because its ‘current agenda is focused on…people with dementia and with multiple conditions’.
The whole point about end-of-life care is that we’re not concerned with any conditions but with the realities of social life for isolated and frail older people; their conditions are irrelevant. Until I see the NCPC setting up a group to concern itself with the social needs of frail people approaching the end of life, and putting some GPs, social workers and district nurses on it, I don’t think they’re going to be leading on this because they haven’t got the point of the end-of-life care strategy.
It’s the same in a lot of specialist palliative care. People seem to think that the warm words about how everyone in health and social care must be able to help people at the end of life better is the ship coming in for palliative care services. No, what the report is saying is that palliative care has made itself an over-medicalised irrelevance to most people approaching the end of life, and some of its skills need to be transferred pronto to all the ordinary health and social care professionals who are doing the job in community health, adult social care and care homes. That’s why care home, dementia, Gold Standards Framework and suchlike projects are flavour of the month.
NCPC (2008) Supporting the end of life care strategy. London NCPC (Briefing 16).
Pricing palliative care
And hot on the heels of cost-cutting palliative care from the US we have – pricing.
Another new Department of Health publication, covering stuff that may be a bit distant to many palliative care buffs. This is about currency and pricing options for local community services. But try reading it, because it’s going to come to you; there’s quite a lot of material in it on end-of-life care, which is treated as one of the major local services (although little to do with palliative care methinks – see my recent post on this topic).
What this is about is commissioners (I’m having a commissioning policy day today) deciding what price they’re willing to pay for a service that they’re buying. It would be well-worthwhile for any hospice to understand and get involved with how they’re going to do that.
Department of Health (2009) Transforming Community Services: Currency and Pricing Options for Community Services. London: DH.