Do not resuscitate orders: a Down’s Syndrome patient sues the NHS

Image Source/Rex Features
By Charles Foster

Do not attempt resuscitation (DNAR) orders are back in the news. It is reported that the family of a 51- year-old, tube fed man with Down Syndrome and dementia is seeking various remedies from the East Kent Hospitals University NHS Foundation Trust. The family apparently alleges that, during a three week stay in the Queen Mother Hospital in Margate, an order was placed on the patient’s notes instructing them not to attempt resuscitation in the event of cardiac or respiratory arrest. No provision was made for review, it is said, and there was no consultation with the patient’s family.

The facts aren’t clear, a hearing is in the offing, and it would be inappropriate to offer detailed comments on the case itself. These cases are always highly fact-sensitive. But a few observations.

I have outlined the legal nature of DNAR orders on Halsbury’s Law Exchange here and in more detail in a paper with Tony Hope in the Journal of the Royal Society of Medicine here.

Here’s how it works. All decisions made on behalf of incapacitous patients will be lawful only if, and to the extent that, they are in the patient’s best interests. In relation to adult patients, the Mental Capacity Act 2005 applies. That has (at s 4) a checklist of criteria which must be used in determining best interests. Almost by definition a person will be incapacitous at the time that they need to be resuscitated. If the patient in this case was incapacitous before that, then s 4(7) of the Act applies:

“He [the clinician] must take into account, if it is practicable and appropriate to consult them, the views of:

(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind;

(b) anyone engaged in caring for the person or interested in his welfare;

(c) any donee of a lasting power of attorney granted by the person; and

(d) any deputy appointed for the person by the court,

as to what would be in the person’s best interests and, in particular, as to the matters mentioned in subsection (6).”

Section 4(6) refers to past and present wishes and feelings, beliefs and values, and other factors.

In this case, there is presumably no LPA or deputy, but there are family members and carers.

A decision about where the patient’s best interests lie must be made at the time of the relevant decision: just look at the emphatic present tense in s 4(1) of the 2005 Act: “In determining for the purposes of this Act what is in a person’s best interests…’ That, for these purposes, is the time of the cardiac or respiratory arrest.

It is clearly sensible, though, for the clinicians to sit down in advance of the arrest and think where the person’s best interests are likely to lie. But it would be legally wrong for that consideration to crystallize into an unreviewable determination.

So: normally a DNAR order will be a pre-emptive assessment (and, if it is made lawfully, a preliminary, tentative assessment) of best interests. Best interests, of course, are not merely medical interests. The old common law made that clear: the 2005 Act does so now. Sections 4(6) and 4(7) insist that, if it is “practicable and appropriate to consult them”, the family/carers/others interested in the patient’s welfare, should, in cases of an adult with pre-existing incapacity, be consulted. It seems that the family in this case will be saying that this obligation was breached. Practicability and appropriateness – both very amorphous words – may be at the centre of the debate.

But the case has hit the press mainly because the patient has Down Syndrome. If it were the case that the DNAR order would not have been made in relation to a patient without Down Syndrome but with an otherwise identical medical (including cognitive) presentation and social and other background, that might well be cause for concern. If the mere label “Down Syndrome” made all the difference – as opposed to the disability conferred by that particular patient’s Down Syndrome – that’s worrying. But perhaps that sort of thought-experiment is rather unhelpful. Again, it’s back to the facts. Down Syndrome covers a multitude of mental and physical disabilities. Some of those disabilities undoubtedly do affect a patient’s ability to live a fulfilled life, and are factors legitimately considered in an orthodox best interests determination.


  1. Mike says

    you’ve omitted the nebulous concepts of treatment that is considered’too burdensome’,or ‘futile care’ – and the fact that medical records get back clerked whenever a request for them arrives at a hospital…and the fact that even if elderly /disabled die, they are ‘low quantum deaths’ anyway , so few if any solicitors are remotely interested in pursuing the cases beyond the £50K insurance cover limits (assuming their parents have any)…

  2. mark driver says

    Regarding dnr my wifes family never got consulted about there son and brother having a dnr where do we stand regarding the laws of this ?

  3. Charles Foster says

    Mark Driver: thank you. The question of consulting with relatives is discussed in a paper by Tony Hope and myself: ‘What sort of DNAR order is that?’ J R Soc Med July 2012 105:279—282

  4. Charles Foster says

    Mike: thank you.
    (a) I omitted specific mention of those concepts because they are subsumed within the notion of ‘best interests’.
    (b) The quantum of negligence claims arising out of deaths (litigation that would be pursued in the County Court or the High Court, Queen’s Bench Division) is irrelevant to the issue of litigation about whether life-sustaining treatment is witheld or withdrawn (which is pursued in the Court of Protection or the Family Division of the High Court). The issues are wholly different, the funding provisions for the litigation are often wholly different, and often different firms of solicitors will be instructed.

  5. lawrence says

    My late Father had a DNACPR order placed , and without his consent , or ant consultation , and he passed -away in a hospital , alone , and with a total of four hospital acquired infections , as well as pneumonia , and they did not give him a chance ,even though he wanted to live , and fought several pneumonia , before , and survived ,His Human rights were abused , and I have complained about this , but to no AVAIL .-as the system ,always covers -up its mistakes , so I will maybe never get the truth , but will not give up , though , as my late FATHER WAS MY LIFE .Thank you ..,

  6. Lawrence says

    I want to take the nhs to court for an illegal dnr order ,but I cannot get a solicitor to take my case , due to time limits on human right law -but my case is winnable -and I have good evidence -it is similar to the Liverpool care pathway , and I must attempt to get justice for my late Father -who was the victim of this .

Leave a Reply

Your email address will not be published. Required fields are marked *