Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Thursday, 29 September 2011

Bits and bobs

Today I was preparing a 2 hour workshop for carers on community care law.  To accompany the workshop I produced a short booklet for people to take away.  I've tried to word it in plain English - well, as plain as you can get with community care law...  I've put it up here (pdf) in case anyone might find it useful.  Please feel free to point out any errors or omissions, or make any suggestions!

Also, as you may have seen, the Court of Protection delivered its judgment about the case W v M yesterday. The case concerned a request by the family of a severely brain-damaged woman in a minimally conscious state to withdraw her feeding tube and allow her to die. Yesterday the court decided that the principle of preservation of life was decisive in this case. I wrote about the ruling for The Guardian here, and I've previously written a bit about the background to the case here.  Counsel for M's family acted pro bono, and Mr Justice Baker expressed his appreciation of their efforts to support the family, saying 'the family could not have had better representation'.  He commented that:

'given the fundamental issues involved in cases involving the withdrawal of ANH, it is alarming to the court that public funding has not been available to members of the family to assist them in prosecuting their application... In this case, the "playing-field" was level because of the exceptional generosity of the Applicant's lawyers. In other cases, members of a family who wished to ask the court to authorise the withdrawal of ANH but did not qualify for means tested public funding may have to appear in person, given the very high costs of litigation. Such a situation would seem to infringe the family's rights under Article 6 of ECHR. There are many demands on the restricted legal aid budget, but consideration should be given to extending the right to non-means tested public funding to family members seeking to bring this type of application. At present, such non-means tested funding is available to parents whose children are the subject of care proceedings under the Children Act 1989. That provision is justified by the fundamental and life-changing consequences which flow from the making of a care order. The same argument applies to applications for the withdrawal of artificial nutrition and hydration.'
It is of concern to me that many important issues that should come before the Court of Protection - including, but not limited to, the withdrawal of life-sustaining treatment - will not, due to a lack of public funding.  It seems self-evidently vital, if the Mental Capacity Act is to have any teeth all in upholding 'P's rights, that P and those acting on P's behalf should be able to bring cases with the appropriate support.

Counsel for M's family were from 39 Essex Street.  In the September issue of the newsletter they comment:

It is unsurprising that a court will be extremely reluctant to sanction steps which result in the death of an incapacitated person, and is likely to err on the side of choosing life over death, given the gravity and irreversibility of the decision to withdraw ANH.
However, it is interesting to note that in any other case, the previously expressed views of a now-incapacitated person, and their likely view of their present circumstances, would be paid considerably more attention.
Perhaps the most important lesson to draw from the judgment is that given the inherent cautiousness about refusing medical treatment on the part of an incapacitated person, there should be much greater use of advance decisions about medical treatment, for those people who are uneasy about the prospect of a court making decisions on their behalf if they should lose capacity.

The case has left me feeling terribly sad, and minded to sort out my own LPA and advance directive.  Although, for the latter, I really have no idea what I would say.

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