Social work and end-of-life care

Social work is important in end-of-life care

‘Right to die’ case: was the situation worsened by inadequate resources?

leave a comment »

Normally we see cases reported where very ill people want to have assistance to commit suicide, and this is prevented by the courts; these get a lot of publicity because the assisted dying lobby wants to push the political envelope to get the law change to permit assisted dying in the UK. However, there are many other cases which are just as heart-rending  and one of these has been reported recently.

This is the citation: Re E (Medical treatment: Anorexia) (Rev 1) [2012] EWHC 1639 (COP) (15 June 2012)

And you can read the judgement here. The judge gives a good summary of the Mental Capacity Act 2005 and the Human Rights Act 1998 considerations that apply.

The situation was different from previous cases where the withdrawal or withholding of life-sustaining treatment has recently been carried out, and the judge referred to a recent comprehensive survey by another judge in:  W v M & Ors [2011] EWHC 2443 (Fam) (28 September 2011)  Link to that judgement.

Why E’s case is unusual in ‘right to die’ situations

The judge explains why this is:

In balancing these factors, I do not gain direct assistance from the facts of reported welfare decisions. In contrast to the case of W v M (above), where the patient was in a stable, minimally conscious state, E is in an inexorably deteriorating, highly conscious state. In contrast to the cases of Re W (A Minor)(Medical Treatment: Court’s Jurisdiction) CA [1993] Fam 64 and Re C (Detention: Medical Treatment) [1997] 2 FLR 180, E is not a teenager but an adult with an entrenched history of acute difficulties. In further contrast to many medical treatment cases, the psychological impact of the proposed treatment upon E is of a different order to many other cases. The treatment would not consist of a single operation or procedure, but a wholesale overwhelming of her autonomy for a long period whose exact length could only be measured in hindsight once it was known whether treatment had succeeded or failed. Further, because of the complexity of her condition, the success of treatment is particularly uncertain. Perhaps finally, in distinction to more recognised situations, there is the fact that E and her family and her medical team had already firmly embarked on the course of palliative care and had psychologically adjusted to the prospect of imminent death.

The judge, reviewing the finely balanced circumstances decide to allow her to be force-fed. He says, after weighing the factors in favour of allowing her to continue on the palliative path:

I place E’s life in the other scale. We only live once – we are born once and we die once – and the difference between life and death is the biggest difference we know. E is a special person, whose life is of value. She does not see it that way now, but she may in future.

The situation in E’s case

E is ‘an intelligent and articulate woman’ according to the evidence who suffers from anorexia nervosa, alcoholism, drug dependence and possibly a personality disorder. The authorities and the doctors involved in her case wanted guidance from the court of protection about whether to act in her best interests, or allow her to die with palliative treatment; she had made an advance decision to do this, but it was not cclear that she had the mental capacxity to do so, hence the court case. The general view, which the judge agreed with, was that this was the most finely balanced ethical decision that you could imagine. She could have been treated, which would involve force-feeding, over a period of months, which would mean operating to insert some kind of feeding tube and sedating her for those months to stop her from resisting the treatment (for example, by pulling the tube out). This had been done before, and when it had, she has got to the point of passing A-levels and being admitted to medical school. Sometimes, she has been positive about her life. On other occasions, her condition had improved to the point where she might have been prepared not to refuse to eat. But ‘re-feeding syndrome’ means that it is physically dangerous to try to feed someone as ill as she was. She said she had hoped to have a successful life, with good relationships, but had failed. She had received endless physical and psychiatric treatment. Part of the problem with intervening to feed her was that she had been abused as a young child and she experienced the physical intervention as a renewal of the abuse.

The judge’s summary of recent circumstances is as follows:

…[I]n early 2006 she was again admitted for inpatient treatment and thus began a continuous series of emergencies and admissions that have now lasted for six years.

During this time, E has had placements in four specialist eating disorder units and one alcohol treatment unit. These lasted respectively for three months, three months, five months, eighteen months and two months. Between 2006, when she was aged 26, and the middle of 2010, when she was aged 30, E spent more than half of her time in one or other of these placements. In the past two years, she has mostly been treated in her own flat in the community as a result of the failure of the residential placements and the unavailability of further funding. This has led to a ‘revolving door’ series of emergency admissions for medical and psychiatric care, often after she was found in a collapsed state after drinking as much as a bottle of spirits a day. Indeed, alcohol has for some time represented her only source of calories. She has been placed under compulsory Mental Health Act section on about 10 occasions, including for one period lasting for almost 4 months.

In the meantime, her relationship with her boyfriend, who had effectively become her carer, came to an end in 2008. He formed a new relationship and has since married. A further blow for E was the loss of a friend in a road accident in 2010.

Following E’s return to the community, the familiar pattern reasserted itself. In early 2012, she was again drinking very heavily, with crises requiring hospital admissions. On 20 March, she was again detained under Section 3 of the MHA. She was initially fed by tube, but opposed this and tube feeding was stopped. As a result, she has not been taking any calories at all since the end of March. On 3 April, a meeting between all the professionals and E and her parents reached the unanimous view that all treatment options have been exhausted. On 20 April, she was admitted to the community hospital for palliative care and placed on an ‘end of life’ care pathway with high doses of opiate medication, to which she is physically addicted.

My comments: the familiar scenario: the services made the situation worse because they failed to put in enough resources

If you are interested, read the whole account. I am going to comment on just a few further excerpts, which are about the provision of services. In these, the judge recognises a situation that will be very familiar to many people to work in social care.

E, although obviously in many respects an able woman, was also extremely difficult to cope with, and the local services failed to do enough, before eventually giving up. You could almost say that she had to decide to die in order to get them to come up with the resources that were needed to help her. After her adolescence, they had not attempted specialist treatment. It is clear that massive resources were needed to help her, and it was made clear to the parents that these would not be made available. Instead, they relied on her boyfriend until he had to give up, and the parents, and no doubt hard-pressed community services. All this was because she was so difficult, but she was so difficult because of her life experience. When we come up against someone who is so difficult, my experience is that so often the difficulty means that managers lose the will to vigorously search for a positive option. Faced with this court hearng, a possible (but very expensive) option was created; it is clear that the specialists felt that specialist treatment had not been sought when it should have been. Was that because everyone thought it would be too expensive?

The services did not go to the Court of Protection early enough, and so compounded the problems about deciding what to do. In fact, it seems that by doing too little in many respects, they allowed the situation to worsen, until they reacted very late, after years of pain and distress for E, and stress and difficulty for the people trying to do their best in local services, gave themselves very difficult decisions to make, leading to more pain and distress, and then have saddled themselves with a huge bill for future years, with fairly limited prospects of success. It is clear that the parents and many of the people involved were dubious about whether they would really come through with the resources, and the fact that they said they would has led to the judge deciding as he did to give her another chance of life. Why could they not have done that years ago when presented with dealing with a very difficult person. Because they didn’t want to spend the money, or because the local people knew or thought they knew that the money would not be forthcoming?

Cheap cheap means avoiding the issue, and it’s clear that this is what the people managing the services did and it has led to the difficult situation the court was forced to deal with. Only under surveillance from the court, did they come up with the necessary resources, which were obviously there if you went looking.

The final statement by the judge is a clear indictment of the health and social care services. It is clear he thought they had done a lot, but not enough and he, like other people involved, were doubtful that a genuine effort would be made by the services.

On 25 May and 28 May, the hearing took place, a weekend intervening. At the end of the first day, the Official Solicitor and the local authority invited me to make an order that E be moved to an intensive care unit, so that she could be fed to ensure that she did not die over the weekend. The parents did not support this. I declined to make an interim declaration as I did not consider it right to embark down the road of forcible feeding without knowing what long-term resources were available and how any programme was to be carried out; nor was I prepared to take that step ahead of a decision as to whether such a course would be in E’s best interests overall.

E’s parents are highly sceptical about fresh professional promises and have grave misgivings about the likely outcome of further treatment. They do not want E to die, but after years of supporting her through a series of unsuccessful treatments they believe that unless further medical intervention has a real prospect of making a difference, her wishes should be respected. For E’s sake, they dread another failed effort, followed by a return to the community without adequate support. They emphasise the long-term nature of the problem and the very poor quality of life that E has had in recent years. They ask: if E survives, having been forced to eat, will she thank us in five years’ time?

The other point that I would make is that in a case with legal, moral and ethical dimensions, it is important for the court to ensure that it is informed of the actual practical possibilities and not to be drawn into theorising. On the first day of the hearing, I was invited to reach a conclusion on the general principle of whether feeding E would be in her interests. I was not willing to engage in an exercise which was of no value without solid information about what treatment options were actually available. As a result, further inquiries were made and a meeting took place involving Dr Glover, Dr C, Dr D, Dr M and others. They drew up a detailed proposal for E’s treatment if forcible feeding was found to be in her best interests.

E’s parents have lived through her difficulties at every stage. In their statement in these proceedings, they emphasise that E is not just a simple case of anorexia but falls between two stools of mental and physical health which has caused numerous difficulties in providing a cohesive treatment plan.

E’s parents added in their statement that they could only support further intervention if appropriate treatment for both her anorexia and alcoholism is available. This would have to be a different, long-term approach to her complex needs, underpinned by long-term funding for residential treatment and followed by provision of sheltered and supervised accommodation to reintegrate her slowly back into the community. In the past, they have repeatedly been told this funding is not available.

Dr Glover identified that a bed is available under Dr M at the specialist hospital, and E’s health authority is willing to pay the costs, which might be in the order of £200,000 – £300,000 annually, if this course is regarded as being best for her.

Dr M of the specialist hospital gave brief evidence. She is a consultant psychiatrist and specialist in eating disorders. Her hospital has a 20 bed inpatient unit occupied by patients with very severe eating disorders, and in some cases comorbidity of the kind E experiences. The staff has the full range of expertise and is highly experienced in refeeding patients with very low weights. She considered that they could offer a programme with a degree of persistence and unity of purpose that E has not so far experienced.

Dr M described E’s prognosis for recovery as quite poor, in the order of 10-20%. She noted, however, that she had not had much specialist treatment since adolescence. It was unlikely that E would resist refeeding once the process started. She would probably need to remain at the hospital for 1-2 years and might be eligible for a specialised community placement after that.

I would not overrule her wishes if further treatment was futile, but it is not. Although extremely burdensome to E, there is a possibility that it will succeed. Services and funding will now be provided that were not available before, and it would not be right to turn down the final chance of helping this very vulnerable young woman. I accept that the nature of the treatment is different to anything E has previously been offered, and I am reassured, rather than discouraged, by the realistic outlook of Dr M.

I record that the state, having instigated this plan of action for E in the way that it has, is now honour-bound to see it through by the provision of resources in the short, medium and long term. Had the authorities not made that commitment, I would not have reached the conclusion that I have.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s