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Down's sufferer takes action over DNR


A man with Down’s Syndrome is taking legal action against a trust after a do not resuscitate (DNR) order was put on his file without the knowledge of his next of kin.

The 51-year-old man, referred to as AWA, was admitted to the Queen Elizabeth the Queen Mother Hospital in Margate, Kent, on September 7, last year.

AWA, who has dementia and is fed by a tube through his stomach, stayed at the hospital until September 26.

But despite daily visits by his family and carer and meetings between his parents and the clinicians, it was only when AWA returned to his residential home that the DNR order was discovered.

It instructed staff not to perform resuscitation in the event of a cardio or respiratory arrest with no provision of review.

It also gave his disability as the sole reason for its imposition.

Merry Varney, from the human rights team at Leigh Day & Co solicitors which are representing AWA, said: “This is definitely one of the most extreme cases we have seen of a DNR order being not only imposed on a patient without consent or consultation, but to use Down’s Syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant prejudice.

“If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly.

“The absurdity of this is highlighted by the contrast with cases where people wish to end their own lives.

“Any doctor assisting patients with capacity such as Tony Nicklinson or our own client ‘Martin’, who wish to end their own life would face prosecution for a serious criminal offence.”

Mr X, a family member who is acting as the litigation friend for AWA, said: “We were all shocked to find out about what had been put into AWA’s notes without our knowledge.

“One member of the family at least was in the hospital practically every day and could have been consulted about the decision.

“We are bringing this action to highlight the issue and to make sure that something like this cannot happen to another loved son and brother.”

Ms Varney said she was also leading another case aimed at creating a nationwide policy for DNR orders rather than leaving them to individual NHS trusts.

Dr Neil Martin, medical director for East Kent Hospitals University Foundation Trust, said: “The Trust cannot comment on this individual case because it is subject to ongoing legal proceedings.

“East Kent Hospitals has put a great deal in place in recent years to meet the needs of vulnerable patients, including practical steps to improve communication with people with learning disabilities and their carers.

“It has a clear and robust policy in place on ‘do not attempt cardio-pulmonary resuscitation’ which complies fully with national guidance from the professional bodies.”



Readers' comments (20)

  • michael stone

    This was reported in today's Times (p 19 - there is also an interesting unrelated piece on page 28) with almost exactly the same wording as the above, but te Times included what appears to be the wording from the DNACPR Form:

    the reason was that AWA 'had Down's syndrome, unable to swallow (PEG fed), bed bound, learning difficulties'.

    This is my area of interest - and 'learning difficulties' has no place in any justification of DNACPR based on 'CPR would fail for a clinical reason', and doctors should not be making section 4 MCA 'best interests' DNACPR decisions alone, in this type of situation. So, Dr Martin either does not understand 'the national guidance' (fascinating term !) or that guidance is not a correct interpretation of the law and ethics (quite possibly both, having extensively discussed this and discovered that many people one would expect to understand this stuff, very clearly don't).

    I'm stopping, before falling prey to my tendency to rattle off treatise-sized elaborations of the problems in this area of 'the rules for dying/CPR' !

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  • DH- I agree! This is shocking.

    How the Trust can have guidance which does not require the involvement of the patient/family/carers in these incredibly sensitive decision beggars belief. Has Dr Martin never heard of the phrase "nothing about us without us"?

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  • jane jenkins

    Anonymous | 14-Sep-2012 12:36 pm

    many hospitals, have got guidance that says patients don't need to be told about DNACPR decisions made on the basis of 'CPR couldn't work'.

    This one involves a mentally-incapable patient, and it then gets very tricky - but many clinicians don't like discussing CPR with either patients or relatives, and the law is quite involved and not awfully well-understood. The DH guidance, tells doctors to properly discuss these situations with relatives, but hospitals often don't follow that bit of advice.

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  • Tinkerbell

    it is very sad that the family were not informed, even if only as a matter of courtesy.

    I don't know all the clinical reasons for this decision so can't comment, but thoroughly feel for the familys position in this matter.

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  • Not all is being said about this case methinks, but DNAR decisions are NOT the perogative of patients OR relatives, but those involved should have been informed at the time.

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  • Firstly the man has Downs Syndrome not a Down Syndrome sufferer.
    Has the mother of a son who has an extra 21 chromosone, the only 'suffering' we experience is from other 'professionals' and people with out dated and bias opinions about the value of our children and thus not treating them with the same respect and right to accessing the same rights as the 'perfect ' person in the same medical situation sat next to them.
    Eugenics is slowly accepted by the world and supported by the medical profession and government, this is when humanity starts going out of the window.
    I feel sad for mankinds future !

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  • redpaddys12 | 15-Sep-2012 3:52 am

    DNAR decisions ARE made by relatives who have been appointed as welfare attorneys, and if resuscitation might be successful the law is very clear about that point.

    If resuscitation would be clinically impossible, then clinicians are not required to attempt it: but if you know CPR would definitely fail, there isn't any genuine decision, is there.

    The law is more complicated that most clinicians accept, if CPR could be clinically successful and the patient is mentally incapable, and there isn't a welfare attorney - but it doesn't say that clinicians can impose decisions in that situation.

    Anonymous | 15-Sep-2012 10:21 am

    I tend to agree with you, but I don't think that eugenics is being accepted.

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  • Tinkerbell

    Anonymous | 15-Sep-2012 10:21 am

    Absolutely. No if, buts or ands. Justice should be blind, unfortunately that is why we need Human Rights because there are some who see lesser abled as 'inferior'. It's happened once and it can happen again God forbid.

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  • Anon 10.21 & 10.52
    No, its not eugenics. People with Trisomy 21 are born with congenital heart defects. It is rare for people with this condition to live to very great ages, most pass away in their 40's and 50's due to this ( although this is improving).
    The chances of rescuscitating a person who doesn't have these conditions outside of a specialised monitored area are slim to say the least. Hence rescuscitation would be futile, hence it would not be performed.
    I have had the extreme pleasure over the years to work, rest and play with a number of people with Downs Syndrome, and I can echo the sentiment that they are wonderfull, full of brio and love and humour, and no nurse or medic would want them to go through unnecessary suffering, and it seems like this is the case here.
    In the wider picture, there does seem to be an erosion of services offered to people with disability in this country. Couple this with advances in technology we may well see people with inherited diseases disappear from the population in the coming decades. Great for those who would be born with cleft palates and sickle-cell anaemia, far more emotive and philosophical in the case of Downs.

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  • The results of surviving resuscitation if brain damage is sustained as a result is devastating. If in addition there are congenital heart defects this surely speaks for itself.

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