The family of a man with Down syndrome are suing a Kent hospital where a doctor placed a ‘Do Not Resuscitate’ order (DNR) on the man without following the proper procedures. The DNR form stated the reason for the order was his disability rather than any medical need. I hadn’t heard about this until this morning when Fat Sister mentioned it. She’s a hospital doctor and has strong views on the issue. We had a long conversation and here, in her own words, is what she told me:

‘A DNR should never be a quality of life decision. It’s a medical decision about whether someone stands a reasonable chance of making a meaningful recovery (i.e. having their heart started and kept going long enough to leave hospital). It’s not appropriate for doctors to make quality of life decisions about people they don’t know. You can’t judge from the outside what someone’s quality of life is like. I’ve met plenty of non-disabled people who have a rubbish quality of life, but I wouldn’t suggest putting a DNR on them just because of that.

What the doctor wrote about the man with Down syndrome was discriminatory and it would suggest their assessment of him was too. There might have been a sound medical reason why this man needed a DNR, but that’s irrelevant because that’s not what got written on his form.

What’s shocking in this case is that rather than giving a medical reason for the DNR, the doctor wrote, ‘Down syndrome, learning difficulties, bed bound, tube fed.’ None of these things would affect his chances of surviving resuscitation. It turned out that some of this information wasn’t accurate anyway – he wasn’t ‘bed bound’ when he wasn’t in hospital and had his wheelchair.

Resuscitating someone is a violent act – the feeling of someone’s ribs breaking as you try to help them is awful. I’m not a violent person but I’ve broken more ribs in my professional life than I care to think about and it’s a very visceral thing. But it’s worth it when we stand a chance of saving someone’s life. But I don’t want to be doing that to people who are medically frail and won’t survive the intervention.

If someone DNR’d you and wrote ‘Tourettes, coprolalia, wheelchair-user and needs 24 hour care,’ I’d flip out, but if there was a medical reason why you wouldn’t survive a resuscitation I wouldn’t want you to endure it.’

I’m sure there are many doctors who feel similarly shocked by this incident. However, there’s a large body of evidence that suggests ‘instructional disablism’ is a problem within the NHS and that people with learning disabilities are particularly at risk. Mencap’s 2007 report Death by Indifference makes shocking reading, and five years on it seems that some medical professionals still harbour dangerous and discriminatory attitudes towards disabled people.

No one would suggest that making life and death decisions isn’t difficult and emotive, but this is precisely why it’s so important that systemic prejudices are tackled. In a healthy society, all healthcare decisions must be made based on an individual’s medical needs and not on the arbitrary value-judgments of a doctor.

One response to DNR

  1. idhreneth says:

    Well written darling. I am a nurse in the US and find that ethical issues about everywhere in healthcare, pertaining to doctors, nurses, etc. What a shame that a physician would choose to casually end a life that means something to someone! It is our first duty, as both nurses and doctors take an oath to ‘do no harm.’ A cognitive disability should not disavow one to value who they are and what their potential may be if they are strong enough to possibly achieve it.

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