The Oxford Mail (UK) reports on a recent complicated case at the Douglas House, the world's first hospice designed specifically for young adults. A 22 year old resident suffering from Duchenne's Muscular Dystrophy wanted to have sex before he died. His solution was to find a prostitute since his prospects at developing a loving relationship in such a short amount of time to have a meaningful sexual encounter was unlikely given his condition. He brought his request to the staff and they debated in their ethics committee whether or not they should honor his request. The debate centered on providing for the patients safety and helping fulfill his wishes. They had concluded that he would have to use his own money, it could not be in the hospice house, and that they would have someone present in his home (in a separate room) in case he needed assistance. Sister Frances Dominica made a lot of great comments about the debate on the Douglas House website. Apparently this conundrum is also featured on the BBC2 in a series about the Helen (children) and Douglas (young adult) House. Nick Willis, the patient in discussion even wrote a very mature and important column in the Guardian. He states very wisely here:Strangely, talking to people - especially parents and carers - about death and dying may be easier than talking to them about sex.
It is a very fascinating read regardless of what you may think about his actions. I must say that this situation has never come up in my career in hospice thus far, but at least now thanks to Pallimed I have at least one case study to refer back to. A final quote from his column:
My experience taught me a lot and gave me a sense of normality to a degree. It also helped me to realise that I could make things happen if I really wanted them enough. But it did not give me what I most want. I continue to hope that I may be able to establish a relationship with the right person. The same as any other "dude", as my older brother Tom would say, I want to be able to hold hands with someone, to love and be loved.
2) A new blog to interest those in the nursing home and hospice world is: Hospice and Nursing Homes. The first two posts look promising. We'll keep an eye on it and post it on the links on the right if the quality continues.
3)I enjoy reading first person accounts of hospice experiences. I like to think it may be a family member of someone under my care and I am getting a glimpse into how they are thinking/feeling. A blogger 'named' Solitary posted a well-written account of her Grandfather's death. I will occasionally post one of these every few weeks if there is something outstanding about the story or writing.
2 comments:
Christian thanks for posting this story. It sounds like the plot of a bad movie but Nick's column is quite remarkable, and moving. Disabled sex is quite a taboo still, let alone with prostitutes. I can't imagine a young man in America speaking so openly about something like this...but perhaps I'm being too pessimistic.
What a fascinating post Christian and thank you. My own feeling was that the Hospice took entirely the right decision is supporting Nick in this difficult decision. Drew is right that disabled sex is still such a taboo and I think Nick and the Hospice were brave to allow this to be filmed.
I agree with Drew's comment that Nick's column is both remarkable and moving. This clever, capable, thoughtful young man has lost so much already, in terms of the use of his hands (he was a talented artist before), his mobility (and he loves the outdoors so that too must have been a massive loss) and his ability to form social relationships at university. Why should he lose his dignity too and why should he not be allowed to fully and freely use and enjoy what he has left (including both his brain and his sexual functions)?
As Nick's care worker put it 'sex is a basic human right'. I can see the ethical and legal implications for the Hospice, and also the risk perhaps of losing support (Helen and Douglas House rely largely on donations and there are plenty of bigots out there still) yet I feel their decision was entirely right.
Thank you again for a fascinating read and an interesting debate,
Livvy xxx
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