This is less a blog post, more a brain splat. I apologise. I haven't got the time or mental energy to devote to a proper unpicking of the relationship between 'Do Not Attempt Cardiopulmonary Resuscitation' orders (or DNAR's for short) and the Mental Capacity Act 2005 (MCA). So I'm just going to pose some questions that trouble me about a couple of recent DNAR cases, and leave them hanging in the air like a bad smell and then scarper.
Let's get the preliminaries out of the way shall we? DNAR's usually apply only to cardio-pulmonary resuscitation (hence DNACPR) although they can refer to other kinds of resuscitation (hence why I'm sticking with DNAR for the sake of generality). Just because there's a DNAR order, doesn't mean you'll be refused other life-sustaining treatments, like antibiotics or whatever. Resuscitation is obviously a form of medical treatment, and as doctors incessantly remind us it's nowhere near as effective as it's portrayed on TV. If it's not effective, you've lost your chance to peacefully slip away, as the odds are you'll die on a gurney with a doctor breaking your ribs. Furthermore, if a person is starved of oxygen for a significant duration there are significant odds of brain damage, sometimes extremely severe brain damage.
But, on the other hand, for people who are determined to live, those are odds worth taking.
Three recent DNAR cases
In recent months several cases concerning DNARs have hit the courts and the headlines. The first, so far as I am aware, is yet to hit the courts, and concerns a DNAR order that was put on a 51 year old man called AWA. AWA had dementia and Down Syndrome (very, very common in people with Down syndrome from their 40's onwards), and was also bed bound and fed through a PEG. According to the press release by his lawyers, Leigh Day and Co, the DNAR stated:
(a) It is “indefinite” in duration (b) The rationale for withholding resuscitation is that AWA had “Downs Syndrome, unable to swallow (PEG fed), bed bound, learning difficulties.” (c) No discussion with next of kin because they were “unavailable” (d) Is blank regarding the information leaflet.It is said that this neither AWA nor his family were made aware of the DNAR, and it only came to light after it was found amongst his belongings when he returned to residential care. His legal team said 'to use Down's Syndrome and learning difficulties as a reason to withhold life-saving treatment is nothing short of blatant prejudice. '
The next case was that of An NHS Trust v DJ & Ors  and took the form of an NHS Trust applying to the Court of Protection for declarations that DJ lacked capacity to consent or refuse treatment and that:
... it is lawful, being in DJ's best interests, for the following treatment to be withheld in the event of a clinical deterioration:The key issues to bear in mind for this case are that the question of withholding treatment was much broader than (chest breaking, often-ineffective) cardiopulmonary resuscitation, but also extended into other treatments which had previously been used for DJ and which had been successful. DJ himself, it was unanimously agreed, lacked capacity to make decisions about these treatments. This observation, recorded by his doctor, tells you something of his abilities and quality of life:
- cardiopulmonary resuscitation
- invasive support for circulatory problems
- renal replacement therapy in the event of a deterioration in renal function
- intravenous antibiotics for further infectious complications
MJ and PJ arrived by the bedside; DJ showed clear signs of recognition, smiled at their approach and mouthed what appeared to be words. He seemed to know appropriately when asked if he was feeling alright by his wife. She combed DJ's hair, during which DJ smiled. DJ was given a paper to read by his son. DJ turned the pages with his left arm. It is not clear to me whether he was reading any of the articles or looking at the pictures in the paper, however he smiled while looking at the paper. During this time he put on and took off his glasses. A nurse put an iPad on a flexible mount attached to a table which DJ could reach. PJ encouraged his father to play a simulated keyboard on the iPad. DJ was clearly interested in the iPad and its mount. He could not play any recognisable tunes on the simulated keyboard, even after his son demonstrated several simple melodies. PJ then opened a communication program with pictographic representations of moods (for example: happy face/sad face/angry face) with a written description under each picture. PJ asked his father to show him what emotion he was feeling. I did not see a consistent response from DJ. DJ appeared to enjoy watching videos on his son's phone. I asked whether DJ was having a good day or a bad day. I was informed that this was a fairly good day, but that he was easily fatigued.His daughter gave evidence that 'He is interested in family events, news, music and the radio. He is interacting more with the iPad.' Here are the views of one of his doctors as to why they feel the treatment might not be in his best interests:
56. In his first report of 28 October, Dr Danbury said this:
The current treating clinical team have said that further treatment is futile and the family disagree. However, futility is a nebulous concept, which has different meanings depending on the individual and the situation. My preferred definitions are as follows:
a. Physiological. If a treatment is given to a patient and that treatment does not have the expected physiological effect, then that treatment can be considered futile. … This is not the current situation, but in my view is the definition of futility used by MJ and JJ.The third case concerned whether or not a Cambrideshire NHS Trust had breached the Article 2, 3 and 8 rights of Mrs Tracey when it had placed a DNAR notice on her (allegedly) without consulting her or her family. Mrs Tracey had cancer and had also suffered a car accident. The case was brought by her husband and took the form of a judicial review under s7 Human Rights Act 1998 (HRA). The administrative court issued a finding of fact today, which is extremely lengthy so I'll cut to the chase - the court found that the first DNAR had been placed on Mrs Tracey without consulting her, but when the second one was placed on her they had consulted her. Mrs Tracey appears to have opposed the DNAR throughout. The court awaits further submissions from all the parties before deciding whether to proceed to a further substantive hearing.
b. Probability. The likelihood of a given treatment curing the patient is low. In the case of DJ, I estimate that the chance of him surviving to hospital discharge is substantially less than 1%. This is the definition of futility most commonly used by clinicians. However, as a population-based statistic, it is less helpful when applied to individuals.
c. Economic. The definition is often used as a macro-health care level to make decisions about the cost-effectiveness of different treatments. This is the definition of futility used by the National Institute of Health and Clinical Excellence.
In my view, the highly probable event is that DJ will die on intensive care. However, while he continues to respond to the advanced therapies available to the intensive care team, this may be some considerable time in the future -- possibly months, but is unlikely to be years.
I believe the natural history of his current disease process is irreversible.
Taken individually, each septic episode will be amenable to treatment, but it is my view that he will suffer further, progressive brain injury due to hypoxic, ischaemic damage
Consequently, his level of consciousness will fall with time, but this will be a gradual, and drawn-out, progressive process.
The end result of this process will be DJ's death. If the septic episode stopped immediately, then I feel he might live in his current state for years, but completely dependent on others for his activities of daily living. However, I see no compelling reason why the septic episode should stop occurring.
57. In answer to the question: Do you consider that it is appropriate for the current treatment being provided to DJ to continue?
a. No, I do not:
i. For the reasons mentioned above
ii. In the highly unlikely event that DJ survives his current illness, he will not be able to function as the musician he was previously due to the neurological deficits (hemiparesis) that he has developed. I have collected significant evidence that leaves me with the view that DJ would prefer to be dead rather than be unable to make music.
What's the Mental Capacity Act 2005 got to do with it?
An NHS Trust v DJ was brought under s15 MCA in the Court of Protection. In Tracey v Cambridgeshire NHS Trust the case was brought under s7 HRA in the administrative court, but the MCA does get a mention for the purposes of confirming that a DNAR constitutes 'serious medical treatment.' The case of AWA looks like a judicial review, and the MCA is not mentioned. So not all the cases explicitly involve the MCA, but some do and wherever I hear people talking about DNARs they typically end up talking about the MCA (for example, I recently attended a talk by a solicitor on making 'best interests' decisions under the MCA about DNARs). Now, presumably this is because at the point of being resuscitated, you don't have capacity as you can't communicate. You could also use the MCA to make an advance decision refusing resuscitation (as many people do). If you've refused CPR in advance, and it's given to you anyway, those delivering it may be committing battery. Some people will be regarded as lacking the capacity to make such an advance refusal.
So far so good. But these cases aren't about when a person has refused CPR and it's delivered anyway. These are cases where a) treatment is hypothetical, not actual; and b) the challenge is not about refusing treatment but about wanting it. Here's where I am confused. The mechanism which gives the MCA traction in care and treatment decisions is by providing practitioners with a defence for acts of care or treatment which are in a person's best interests, but which the person "lacked capacity" to consent to. The MCA does not provide a defence, unless I'm missing something huge, for omissions to act. In effect, you can use the MCA as a shield to beat off those who would inflict treatment on you, but you can't use it to demand that they do treat you. You could, potentially, use your Convention rights or you could argue that treatment refusal which was based on a person's disabilities was discriminatory. But I can't see how the MCA helps you at all.
Which in some ways is a shame. As, for all it's faults, the MCA best interests procedure does at least have some pretty good points when it comes to consultation - which is clearly an issue in the cases of AWA and Tracey. Furthermore, best interests case law in the Court of Protection, as Jackson J's judgment in NHS Trust v DJ showed so clearly, is pretty receptive to social, emotional and personal factors and not just deferent to "medical" considerations when considering quality of life. That whole "it's a medical decision and nobody can second guess a doctor's determination of medical best interests" huffing puffing irritates the hell out of me. It's an interesting question whether medical best interests (in terms of a doctor's professional duty to treat or not) is the same thing as MCA 'best interests', and what happens if these come apart. I like Jackson J's reasoning on best interests in An NHS Trust v DJ. Restoring person to a quality of life which is worthwhile to them, even if they never make a full recovery in medical terms or even leave the hospital, is fine by me. And I find Dr Danbury's reasoning (quoted above) about why treating DJ was futile creepy and pompous to say the least.
But I just can't work out how you can rely on the MCA to challenge a doctor's refusal to treat, or failure to consult with you and your family. I also can't work out what judgments like An NHS Trust v DJ (or even Re E (Medical treatment: Anorexia) (Rev 1))* are actually doing in legal terms. I can see why if you're about to make some controversial decision to refuse them life saving treatment then it feels good to know a judge agrees with you that it's in their best interests. I can see that going to court is in itself quite a desirable thing to do (theoretically at least) as it gives everybody to a chance to have their say in an impartial forum (unless, of course, the person concerned isn't actually able to participate in the court proceedings, or is only able to do so through somebody arguing for the opposite of what they actually want, but that's another debate for another day). In Glass v UK doctors were castigated for not going to court when a humdinger of a row broke out between Carol Glass (the applicant's mother) and the hospital over whether or not her son should be given morphine. But I still can't see what darned good a s15 MCA declaration buys you if you're a doctor refusing to treat a person. The Court of Protection cannot order treatment. It is not obvious (to me at least) that s5 or s6 provides a defence against omissions to act. So what are we using the MCA for, in these cases?
<scarpers, leaving a bad smell>
*Because the legal cover obtained by a best interests declaration, whatever that is, could have been obtained through use of the Mental Health Act 1983; meanwhile the court couldn't order the treatment even if it did think it was in E's best interests.
[Update 12 February 2013: Since writing this, the Tracey case was refused permission to go to full judicial review, and the case of DJ v NHS Trust was overturned by the Court of Appeal. Frustratingly, at the time of writing the courts have not published the judgments explaining their reasoning for either of these decisions. Readers who are interested in the question of whether treatment refusal/withdrawal is correctly a 'mental capacity'/'best interests' issue might enjoy this recent paper by Tak Kwong Chan and George Lim Tipoe:
Adults without the capacity to make their own medical decisions have their rights protected under the Mental Capacity Act (2005) in the UK. The underlying principle of the court's decisions is the best interests test, and the evaluation of best interests is a welfare appraisal. Although the House of Lords in the well-known case of Bland held that the decision to withhold treatment for patients in a persistent vegetative state should not be based on their best interests, judges in recent cases have still held that the best interests of persistently vegetative patients demand that the right to die with dignity prevails over society's interest to preserve life. The basis of suggesting that it is in the best interests for one who is alive (although vegetative) in peace to die in peace is weak. Even if it may not be in their best interests to live on, it may not be so to die either. The phrase ‘the right to dignity/to die with dignity’ has been misused as a trump card to justify the speculation that a vegetative patient would necessarily refuse to live on machines. Without disrespect to the court's decision, we argue that the use of the best interests test to authorise withdrawing/withholding treatment from persistently vegetative patients without an advance directive is problematic. We propose that the court could have reached the same decision by considering only the futility of treatment without working through the controversial best interests of the patient.My parting thoughts on this issue are that it all seems rather unfair really. When medical authorities want to protect themselves against potential future litigation for omissions to act, they have used the Court of Protection and the Mental Capacity Act to obtain a declaration that it would not be in a person's best interests to administer treatment. In effect, a declaration to the effect that administering treatment without either consent or the best interests defence would be unlawful. But the best families and patients can hope to get from this litigation is a declaration that it would not be unlawful to give the treatment, not a declaration that doctors must give the treatment. That is a public law question. So by taking the case to the Court of Protection, rather than the family seeking judicial review on public law grounds, any potential resources to litigate will get sapped by fighting the attempts of medical authorities to protect themselves against litigation, without any prospect of securing what families and patients want in these cases: treatment.]