Social work and end-of-life care

Social work is important in end-of-life care

Archive for November 2012

Ikiru by Kurosawa: living (with a cancer diagnosis) until you die means using yourself

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A relative who thinks I’m more intellectual than I am gave me a box set of Kurosawa dvds from the British Film Institute. You know how it is with presents, you have to do the business, so I’ve started watching them.

And got no further than the first, Ikiru, made in 1952. Ikiru means ‘Living’ or perhaps ‘To live’. The dvd comes with a lecture from a BFI film critic with a very colourful shirt. The story, briefly, is about a long-widowed bureaucrat, who has spent his life paper-shuffling and not really responding to the needs of his community. The doctors do not tell him, but he finds he has a terminal diagnosis of stomach cancer. No I’m not going into a diatribe about how doctors should tell the truth; I think that depends on the circumstances, although at this time in Japan Kurosawa obviously judged that there was a policy of not telling people.

The bureaucrat goes on the lam: he tries drinking more luxurious liquor than he usually does, and goes out on the town trying out prostitutes, and forms a fatherly relationship with a young girl, through whom he learns that he wants to change what’s left of his life. Returning to work the next day, he says that to get a children’s playground for local community campaigners requires a proactive approach, and he sweeps out of the office, scattering a trail of astonished bureaucrats in his slipstream.

The next scene is his funeral wake. He has died in the snow on a swing in the playground. Almost half the film is the people at the wake arguing about his achievement, and whether it came about because he knew he was dying. In a series of flashbacks they tell the story of his persistence in using his understanding of the bureaucratic system to get the playground built.

I think the multi-coloured-shirted one rather misses the point of the message about living until you die. If you are really going to live, there is no point in trying to have all sorts of what other people tell you are wonderful experiences. The message of the film is that really living until the moment you die is about using yourself, your skills and what you have made of your life to achieve something.

And better, too, I say as a social worker with a strong belief in the value of supporting community endeavour, to do it in such a way that it helps others achieve things through mutual assistance.

Link to a film blog about Kurosawa, from which I nicked the picture of the bureaucrat’s death.


Written by Malcolm Payne

29 November 2012 at 12:31 pm

Liverpool Care Pathway has become a tickbox exercise, not a thoughtful shared process

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As I said in a recent post, there have been increasing concerns about the Liverpool Care Pathway, and this has finally led the government to set up some inquiries to get the heat out of the situation.

Link to BBC News report about the inquiries.

The BBC’s Health correspondent, Nick Triggle has written a clear and balanced account of the issues.

Link to Nick Triggle’s article.








The newspapers (the Telegraph) who have been drumming up criticism have reported the Department of Health statements. Attached to these articles are some good comments.

Link to the Telegraph article and comments.









Link to an alarmist Mail Online article

My comment

It’s important to understand what the LCP is. It is a protocol, basically a list of things to do, once you have identified that a patient is nearing the end of their lives. The purpose of the LCP was originally to transfer experience of hospice care to general hospitals. An important aspect of the LCP is discussion with patients and relatives about what you are doing.

But the situation is different. Hospitals are busy places focused on treatment, whereas hospices are calmer environments focused on care. Hospitals cover a range of illnesses at lots of different stages of treatment, whereas hospices deal mainly with cancer (still) and other illnesses where there is a clear prognosis that the patient is nearing the end of their lives. The different situations mean that identifying when someone is approaching the end of life and then having a thoughtful discussion with patients and their relatives is more difficult to do in hospitals. It requires judgment and planning, but the hurried ‘acute treatment’ environment in many general hospitals does not make that very easy.

Another problem is that the government has pushed for the rolling out of LCP to improve the care of patients in hospitals; there is talk of financial incentives as ‘bribes’ to clear beds of people who are dying. But the real problem is the assumption that a list of things to do can be ‘rolled out’. What happens is that it becomes a tickbox exercise instead of a thoughtful shared process. And this unfortunate campaign against it is the result.

Written by Malcolm Payne

28 November 2012 at 3:04 pm

All-Party Parliamentary Groups relevant to palliative and end-of-life care

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I’ve recently been looking at the work of All-Party Parliamentary Groups on palliative and end-of-life care and have compiled a listing of links to groups.

Link to listing of links to All-Party Parliamentary Groups relevant to palliative and end-of-life care.

Written by Malcolm Payne

26 November 2012 at 11:56 am

NHS property changes: less good working environment and less money than they think

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One of the interesting features of change in the NHS that most social workers probably don’t think about is the way in which property is being reorganised. But we need to. One reason is that it is one of the ways in which the government hopes to extract money from the NHS – and we ought to know and worry about that.

And another reason is that it may have a serious impact on the place where we do our work. A recent National Audit Office report on using the government’s property more efficiently reported that the cost of running the government’s estate was reduced by about £100m in the years 2004-10, and by £212m in 2010-12.

Now look at these figures:

13.2 m2 – current average amount of space per person across the government’s office estate

10.0 m2 – Operational Efficiency Programme’s recommended average amount of space per person for government office buildings

8.0 m2 – Government’s aim for the amount of space per person for new and refurbished office buildings.

£830m – potential further reduction in annual costs if a space standard of 10 m2 per person is achieved.

Link to the NAO Report.

Citation: Cabinet Office (2012) Improving the efficiency of central government office property. London: National Audit Office.

Nobody can complain about the government wanting to use space more efficiently, but there is an effect. The government intends to save lotsadosh by cutting back on the amount of space occupied by staff as well as cutting back on the number of staff. If your job survives, not only will you be running round like a blue-arsed fly, you won’t have so far to run. And note that the sum for the money saved is only the recommended amount: the government aims to go much further than that.

We saw the results in a recent pleased announcement by the Cabinet Office and the Department for International Development. DFID is moving in with the Cabinet Office from its present property next to Buckingham Palace, making a very prestigious property available for the government’s friends in property development to turn into multi-million pound apartments or a luxury hotel. It will also give lotsadosh to Westminster Council, another favoured friend of the Conservatives in government.

Announcement of savings from DFID move.

Actually, people in the property business are only too well aware of what anyone employed by government knows, that their working environment is mainly old-fashioned, run-down and inefficient. A recent press report suggests that government estimates of potential gains from property sales are over-optimistic because the property is so poor.

Press report suggesting that government hopes for gains are over-optimistic.

So it’s actually more difficult than the government tells us to make lotsadosh from fiddling around with property.

Now apply this to the NHS.

The first thing you have to know is that, in 2011, the NHS set up a property company – known as NHS Property Services Limited (PropCo) – to manage centrally the property of the NHS. In the past, when there has been a reorganisation, NHS property has been passed on locally to whichever organisation is running the continuing service. Not so this time, plans have been announced to transfer a lot of property to Propco, which will manage it more ‘efficiently’. This is about making savings on the government’s balance sheet: the financial benefits will go back to the Treasury, not to local services. All property is being evaluated and if it’s not needed for local services, it will go to Propco. This will wipe out one more way of getting local services out of a financial hole and finding the money to improve them if there is a chance. It will not affect property currently in use for clinical services, but it will remove property flexibility for local services.

A legal commentary says:

NHS Propco is expected to be the recipient of the majority of the existing NHS estate. Looking at existing numbers of employees working in estates and facilities departments of the current SHAs and PCTs, NHS Propco will inherit 2,000-2,500 people – somewhat of a behemoth in property company terms. Commentators also note it can expect to receive assets valued upwards of £4 billion from the PCTs and SHAs placing it on a par with property owning companies such as Land Securities and British Land.

Link to an article on the new property arrangements.

You have to doubt that all this will be as wonderful as the government says, partly because a lot of this property is likely to be irredeemably naff. But to understand a bit more, you have to know about Propcos and Opcos, because the NHS is not the only organisation to have Propcos. For this I turn to a recent article in the Real Estate Gazette (don’t I get around in the service of better information for social workers and others involved with end-of-life care?).

Link to article on Propcos and Opcos

You’re probably vaguely aware of the concept of sale and leaseback, even if you’re not sure how it works. Sale and leaseback involves an organisation that owns the property in which it provides its services (an Opco, short for operating company) selling that property to a company that specialises in managing property (a Propco) and then paying that company rent. Many of your local chainstores are run in this way. The division of responsibility means that managers of the shop can get on with what they know about, which is selling you stuff, rather than worrying about repairing the drains, which the Propco people understand.

But the great glory of this is that there is also a financial manipulation. The Opco gets a cash sum to feed into its business (or increase the managers’ bonuses) and the Propco gets a property. Because property is a nice solid valuable item, they can use it as collateral for a loan, which allows them to spend money buying other properties and developing their empire. The interest on the loan is paid for by the rent the Opco pays for the shop. Even if the Propco and the Opco are divisions of the same company, the arrangement still helps both, because they are financed for their separate activities, and not as one with mixed responsibilities.

But what happens when there is a financial and/or property crash? We know the answer to this, because we’ve been having both over the past few years. You get a Southern Cross situation; that is the residential care homes organisation that ran into difficulties because it could no longer pay the rents on its properties, because local authorities and the NHS squeezed the price they would pay for patients in nursing and care homes and would pay for fewer patients. Patients who paid for themselves also had financing problems and were less amenable to paying high prices. The Opco (Southern Cross) can’t pay the rent, but the Propco can’t reduce the rent because it was assuming that the rent would pay the interest on the loans they had to get financing to buy the properties in the first place. Also, the value of the property reduces and the Propco can only sell it at a lower price.

Transfer this account to arrangements for getting money out of NHS property. All the government’s clever schemes to get healthcrae staff into small local community practices are likely to leave a surplus of hospital property. It is not very saleable. After all, who wants to by an out-of-date hospital or clinic? Because when the market is on the upswing, you could get loans could convert it to nice saleable housing, it had some value. Now we’re in a recession so nobody would want to buy it and convert it and anyway they can’t get the loans to do so.

All of which tells you that the government may be being optimistic about getting much out of the value of surplus NHS property and they’re going to reduce the financial and service flexibility at the local level by running a big expensive property company at a time when making money out of property is quite difficult.

So NHS staff are going to get a poorer work environment and less flexibility in their immediate employer, and the government is probably not going to get as much of a saving as they think, even though they’re going to do their best to sell the family silver (sorry property) to pay off their debts, leaving the NHS with less property flexibility in the future. You can only sell it once.

Written by Malcolm Payne

15 November 2012 at 11:35 am

Consultation on assisted dying bill: info, comment, social workers’ roles

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As I said in the previous post, the All-Party Parliamentary  Group on Choice at the End of Life is consulting on a draft Bill on assisted dying.

Social workers are likely to be involved

Here in some info and comment on the draft Bill, including some pointers to where social work might be affected. Although we usually think of doctors being the main group affected by assisted dying, because they will be the main decision-makers and they and nurses will probably be the ones who set up the actual means of dying, social workers are likely to be involved because they are part fo the teams caring for the patient and helping with the decisions, and their records and knowledge and skills in working with families are likely to be used in decision-making.

Info about the consultation

You have to reply by the end of this week (20th November) and there will be a report on February on what people said.

Link to the Draft Bill and Consultation form.

Info about the proposed Bill and its priorities

The proposed Bill is very limited: it is for people who are diagnosed with a terminal illness and who have mental capacity to make the decision to kill themselves. People would not be allowed to make advance decisions if they lost capacity. Therefore, the proposals would not affect a large group of people who might want help to kill themselves because they are growing older and more frail, or who had considerable disabilities that were not terminal, or those who have dementia when the issue arises. It would be the dying person’s own decision, and act of suicide and their view would have to be informed, settled and voluntary.

A crucial point about the Group’s priorities is spelled out in the title of the proposed Bill: ‘safeguarding choice’. It’s about patient choice and making that choice safely, not any of the other things that you might be concerned with in thinking about assisted dying.

The APPG’s arguments for the Bill

They make arguments in three main areas:

  • patient safety
  • preventing suffering
  • patient choice

The main points are that people are being assisted to die and people helping them are unlikely to be prosecuted, but what happens is hidden and unregulated. There is no way of managing the quality of the assisted dying process or ensuring equality of access to it. Many people have gone to the Dignitas organisation in Switzerland, but this is only available to people who can afford it and who are able to travel. People who help them, including social workers who give advice, make contacts or organise travel, may be prosecuted for helping. There is evidence that in some situations doctors help people to end their lives or take action that leads to death, but this is not consistently available to people who may wish to call on such help. People also try to end their own lives and this can be distressing and is less likely to work than if doctors do it. If it doesn’t work, people may be left in distress with greater health problems as a result. There are no checks to make sure that a person is not being coerced or if they have the mental capacity to decide or full information to base a decision.

The main argument, therefore, is that people are being helped to die, but through a non-transparent process without safeguard. The Director of Prosecution has issued guidelines which mean that we all know that someone who is close to the dying person will not be prosecuted for assisting in their death, provided they clearly do it out of compassion. This means that professionals are more likely to be prosecuted for taking part in assisted dying than family members. We mainly talk about doctors in this regard, because they are likely to have the skills and access to prescribe and administer appropriate drugs effectively. All sorts of other professionals, including social workers, might become involved, however, and also have little protection. For example, social workers might be asked about whether the patient’s view of settled, based on their previous contacts with the family, or whether coercion is taking place in the family. The fact that people know there is a risk of prosecution discourages open discussion by patients of their options, because they don’t want to put people in a difficult position.

Link to the Director of Public Prosecutions guidelines on assisted suicide.

The draft Bill’s proposals

The proposed bill provides, along the lines of the legislation for mental health compulsory action, for two doctors, usually a patient’s own GP or specialist and an independent doctor, to assess patients’ capacity to make the decision, their motivation and the decision-making process, so that patients are clearly are not being coerced. My view is that they are unlikely to be truly independent, a GP or specialist would probably help to identify the so-called independent doctor and it will be known who is likely to be helpful in making a positive decision. So the GP and patient or the patient’s helpers will look for someone likely to support their views, and doctors likely to decide against assisted suicide will be winnowed out from the process. Access to the medication would come from official sources if the decision is favourable, so you wouldn’t have dangerous drugs being built up in people’s homes, as it sometimes is now.

The process would become available when an adult (not a child, and not the parents of a child on the child’s behalf) is given one year or less to live and decides of their own volition to ask for assisted death: nobody could ask on their behalf. There are two problems with this in my view. First, it does not make assisted suicide equally available, because often the healthcare system doesn’t realise that someone is dying until they are close to it, and it is well-known that doctors cannot reliably give a prognosis of how long someone is going to live, except in the very last hours. So the provision for a year of thoughtful contemplation and arriving at a settled view is likely to be unused in many cases. Second, people might ask for assisted dying not because they really wanted it but because they did not want to be a burden or thought other people felt they were a burden or because they felt they ought, or they couldn’t stand the conflict in the family about their illness and so on. There are lots of pressures on people who are dying to get on with it. the fact that they might actively ask is no protection against the risk of subtle coercions or pressures on dying people, when we ought to be concentrating on the quality of their (limiteD) life.

People would also have to have a ‘clear and settled intention’.  All the evidence is that most people don’t have such an intention. Even if they are the kind of person who makes plans, it would be the doctors’ job to make sure they were fully informed. I have my doubts about whether lots of doctors would be good at this kind of teasing out the issues for people – this is not the usual medical way of operating. Most medical communication is, quite appropriately, about making clear diagnoses and decisions about treatment, which requires a completely different set of communication skills. Some doctors do it well, either naturally or with training, but quite a lot will not do a good job. So it might fall to discussion by others, including social workers, who will have the responsibility of giving information delegated to them by doctors in a hurry.

Patients would have a period of some days (depending on the circumstances) to change their minds – a bit like the reconsideration clauses when you sign up for insurance. They would also have to be told or experience how wonderful palliative care could be made available to them; how this is done is likely to be very variable, and no real protection at all.

Doctors (or often probably nurses on their behalf) may set up a delivery system for the medication that will kill the patient, but the patient will have to be able to administer it themselves.

There would be a code of practice and an inspectorate – I can’t see the government being prepared to pay for this, and it would probably get added to the job of the already overstressed Care Quality Commission or some other similar existing body.

Citation: All-Party Parliamentary Group on Choice at the End of Life (2012) Safeguarding Choice: a draft Assisted Dying Bill for consultation. London: Choice at the End of Life All Party Parliamentary Group.

Written by Malcolm Payne

13 November 2012 at 2:45 pm

Info about the All Party Parliamentary Group on Choice at the End of Life

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All Party Parliamentary Groups (APPG) are not official or government bodies, they are committees of Parliamentarians with an interest in a particular topic. They include members of both Houses of Parliament: the Commons and the Lords, and are open to, but do not necessarily include, people from all political parties. They have to have at least 20 members from the parties of government, and at least 10 from other parties, at least six of whom must be from the main opposition party.

Many of those concerned with health and social care issues are set up and/or supported by lobbying organisations. For example, the one on dementia is provided with a secretariat by the Alzheimer’s Society and the one on ageing and older persons by Age UK.

Link to further information about APPGs.

Link to official information on the APPG on choice at end of life.

The APPG on ‘choice at end of life’ is supported by ‘Dignity in Dying’ the pressure group trying to get a change in the law on the right to die for people at the end of their lives.

Link to the website of the APPG on choice at the end of life.

In the recent publication of a Draft Assisted Dying Bill, the APPG presented itself like this:

The APPG on Choice at the End of Life and Dignity in Dying are concerned with the quality of people’s deaths. As a Group we advocate the right of dying people to make decisions about how and when they die. We do not advocate a right to die for people who are not terminally ill. We believe that dying people should not be made to suffer needlessly and should be able to have what they believe to be a good death.

Link to the consultation and draft bill.

Its secretariat and statement of aims makes clear that it is not a neutral or balanced organisation: it has a specific objective which is pro-assisted dying.

Written by Malcolm Payne

13 November 2012 at 12:48 pm

Remembering our loved ones: All Saints in Slovakia

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Irritated again by Halloween (a nearby house had a plastic skeleton hanging outside, and they were drinking wine by a lit brazier in the front garden at 5 o’clock in the afternoon). I was reminded of being in Slovakia last year on All Saints day (the day after Halloween) and huge crowds visiting the graves of their family members to picnic, lay flowers and lights at the cemetery. A much better ceremony for remembering and thinking about our loved ones. Why don’t we do this in Britain?

Written by Malcolm Payne

5 November 2012 at 2:36 pm

Posted in memorials

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