Letter: Effects of 'living wills' on doctors, carers and the law
Sir: I was interested to see your report about the 'living will' designed for people with HIV and Aids, and in particular that the document allows the patient to appoint a health-care proxy to take part in decisions about medical treatment.
As part of a larger research study undertaken at this institute, we interviewed 32 informal, unpaid carers (mostly partners or friends) of a sample of gay men who had recently died of Aids, and asked them whether they thought their friend had died at the best time.
Eight did not reply to this question or said they did not know. Of the 24 who did, 15 thought their partner or friend had died at the best time, and one wished his friend had died later. However, eight of the 24 (33 per cent) said they wished their friend or partner had died earlier.
Invited to make further comments, they all mentioned the pain that was being suffered, which was not alleviated in the final weeks. Comments included: 'What life did he have in the last few weeks?'; 'I kept him going too long'; 'It could have saved him a lot of anguish' (if he had died earlier).
These carers were probably in closer and more continuous contact with their patients than any professionals. Their experience suggests that some of them might welcome such a document not only to 'help preserve dignity' but also to avoid any unnecessary
'anguish'.
Yours faithfully,
MADELEINE SIMMS
Senior Research Officer
Institute for Social Studies in Medical Care
London, NW3
8 September
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