Burke and Wills, Bowen and Gard: The English Courts, Best Interests and Justice

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

Donald’s wife, Melanie, is shattered. But she goes on the internet to see if anything can be done. She knows this is what Donald would want. She finds a world expert at a world class centre in Boston who has trialled a new treatment, X, on ten patients and has obtained significant results in one of them. She calls the expert and he tells her there is some chance of some improvement in her husband but it is low.

Donald’s London specialists don’t believe this. “In America, they will treat anything.” They say Donald is suffering in intensive care and it kinder for him to die. They go to court to ask for permission to disconnect Donald.

Melanie objects. She wants to take Donald to Boston for the experimental treatment X. She does not want him to be treated in London. She will use their money and all she wants is to be allowed to take him to a world leading centre to be treated. She says 10% is a chance worth taking. Indeed, Donald has told her that any chance would be worth taking for him.

His doctors disagree. There is no chance and he will only suffer. It is in his best interests to die.

Because Donald is now incompetent, the court must decide what is in his best interests, because there is a dispute between the doctors and Donald’s wife.

The judge hears evidence from the US specialist but claims that the chances of the treatment are near zero and good enough as zero. He describes the treatment as futile. Because it would harm Donald to continue treatment, he orders the ventilator to be turned off. Melanie is not allowed to take Donald to the US because that would harm him, according to the judge.

“It is in his best interests to die,” the judge declares.

Donald’s ventilator is turned off and he dies.

Lessons from the Case of Donald Wills and Charlie Gard: Could You Be Told You Are Better Off Dead

This is a fictional case. It would be outrageous that Donald’s wife could not use his funds to provide an intervention that he has the funds for, wanted and his surrogate requests.

But could such a thing happen under English law? One might worry so, if we conjoin two English cases: Charlie Gard and Leslie Burke.

Everyone is now familiar with the decision, now being re-examined of Charlie Gard in which a trial of experimental treatment was denied on grounds it was not in his interests.

Mr Burke was a 45 year old man with a progressive brain disorder which required artificial feeding and fluids (artificial nutrition and hydration – ANH). He wanted ANH to continue when he became unable to communicate. He feared dying of thirst.

The Court of Appeal was sympathetic but argued his concerns were misplaced. While he was competent, he could request feeding and fluids and they would be provided. If he later ‘los[t] competence in the final stages of his disease, first losing the ability to communicate while remaining sentient, and shortly thereafter lapsing into a coma, [then] ANH will cease to be capable of prolonging his life’. (See Thiagarajan M, Savulescu J, Skene L. Deciding about life-support: a perspective on the ethical and legal framework in the United Kingdom and Australia. J Law Med. 2007 May;14(4):583-96)

If one is sentient, one can experience pain and discomfort. Mr Burke’s worry was precisely that he would experience discomfort, and be unable to communicate it. We can’t tell what dying people are experiencing, or how long their suffering lasts, because they never return to tell us. And perhaps they couldn’t even if they were to miraculously return. I guess Mr Burke wanted to err on the side of avoiding pain and suffering.

If ANH was not capable of prolonging his life, as the judge so confidently concluded, what is the downside? ANH would be possibly symptomatic treatment, which his doctors and judge denied on their certainty it couldn’t help him. But that requires 100% certainty that they are right, just as we have to be 100% certain (or at very least highly certain) Charlie Gard would not benefit from the experimental treatment.  But notice, there is no real downside to giving the ANH if it is not capable of prolonging his life. Even if there is only a very slim chance the doctors are wrong and Mr Burke might suffer, better to err on the side of addressing his fears.

The same applies (roughly) to the case of Charlie Gard. There is some discussion as to whether he can experience pain at all because of brain damage. A recent statement released by GOSH states:

“so far as can be discerned after many months of encephalopathy, [he lives] without any awareness. At the moment, he is on a low dose of oral morphine. Before that was started quite recently, all of those caring for him at GOSH hoped very much that Charlie did not experience pain. They did so in the knowledge  that if he did not, it was because he had no experience at all because he was beyond experience.”

But note if he doesn’t experience pain because he is “beyond experience”, there is NO downside to a 3 months trial of experimental treatment, because his brain damage is so bad he can’t experience anything.  (Except, perhaps, for someone’s concept of “death with dignity” that has never satisfactorily been defined.)

But if his brain damage is not so bad, and he does experience pain, then perhaps it is not so bad as to be incapable of any improvement. Moreover, if he is capable of experiencing pain, why assume he only has a little pain, and treat with low doses of morphine, only started recently? Why not err on the side of caution and assume he has pain and commence full sedation and analgesia? It makes sense to give no analgesia, or full analgesia, but low dose analgesia seems difficult to justify just as it is difficult to justify treating Charlie for the last 5 months without experimental therapy. There is no upside and only downsides. There is no down side to high dose morphine (as far as I know) – Charlie can’t stop breathing because he is on a ventilator.

The Court of Appeal in Burke made a judgement that continued feeding, like experimental treatment in Gard and Wills, was not in Burke’s interests. In the case of Gard, it is the alleged painfulness of intensive care that makes it positively against his interests. By extension, if artificial nutrition and feeding were painful or caused suffering it would be wrong and forbidden to provide them because they would be against his interests.

Artificial nutrition is a burdensome procedure if provided by a nasogastric tube.

So, if Burke had been fed by a nasogastric tube, and it was decided this was against his interests when he became incompetent, it might judged be illegal to remove him to the United States for artificial feeding, because that would be a harm to him, according to this logic. Burke, like Wills, would not be able to pay for the care he wanted (assuming he could afford it) because a court might decide it was bad for him, even if there was a reasonable doctor at an excellent centre willing to provide it, as in the Gard case.

What we might conclude from the Burke and other cases (see below) is that courts might decide what is in person’s best interests and their previous requests and wishes (or those that speak for them) will not necessarily determine what is in their interests. What the Gard case tells us is that Courts will weigh up the potential benefits and harms, and their probabilities and come to a decision based on a “balance sheet” approach about what is best for a person when he or she becomes incompetent, like Donald Wills.

Justice Hedley, in another case of Charlotte Wyatt cited in Gard, said that ‘Best interests must be given a generous interpretation’[1] but although he referred to the broader concept of best interests as including non-medical interests,[2] he did not go further, saying simply that, ‘The infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in a definition of best interests’.[3]

In a nutshell, Courts will intuit whether it is in the best interests of a person to live or die. You might worry that if you have said that you don’t want to die in that situation, that desire will not be determinative. And what the Gard case shows us is that even if you have the funds to provide for your own treatment, the Court might decide that it is harm to you, and that death is in your interests, even if you thought differently!

Is this scare mongering, playing into the hands of extreme right wing libertarians? Well, perhaps I have become too emotionally involved in this case now but it seems to me possible genuine concern in another way. In another case after Burke in 2011, the opposite thing happened. M contracted viral encephalitis back in 2003, leaving her in minimally conscious state. Her petitioned a court to remove her ANH on the basis of her previously expressed wishes. However the judge, using the “balance sheet” approach used in Gard and other cases, came up with the view

“M does experience pain and discomfort, and her disability severely restricts what she can do.  Having considered all the evidence, however, I find that she does have some positive experiences and importantly that there is a reasonable prospect that those experiences can be extended by a planned programme of increased stimulation”.  (W v M and others [2011] EWHC 2443 (Fam))

M has profound cognitive impairment. She is nearly unconscious. Despite her family’s evidence that she would not want to live in such a state, the judge decided that it was in her best interests to live with such profound disability. So evidently, the bar is not very high that Charlie Gard would have to jump to reach a life worth living in the view of some judges.

A more recent judgement has gone the other way. Courts did withdraw ANH from Mr Briggs in 2015 because his family (and a police officer friend) presented evidence he would not want to be kept alive in this state (Briggs v Briggs [2016] EWCOP 53). Nonetheless, it is disturbing that such judgements appear inconsistent, and that whether one has one’s life sustaining treatment withdrawn, or gets experimental treatment, may depend on the judge sitting at the time and his or her interpretation of best interests.

It is plausible that there is reasonable disagreement about best interests. There are some conditions, like brain death and permanent unconsciousness, in which there is a reasonable consensus that they are not worth living. But for conditions like minimally conscious state or other severe cognitive impairment, there can be reasonable disagreement. I don’t know if it is worth living in a minimally conscious state. I have never read or heard reliable reports from people who have lived in that state. I have written it might be kind of living hell*  but it might not be. We don’t know.

When there is reasonable disagreement about whether some state is worth living in, or a chance is worth taking, we should defer to other factors, like the person’s own past wishes or values, or those of the parents whose child it is. Just as we should have deferred to the wishes of Burke and M, as the court did in Briggs, we should defer to the wishes of Connie Yates and Chris Gard, not because they must be right but just because there is reasonable disagreement.

Justice

I have long argued that doctors and Courts making judgements that it is in a person’s best interests to die rather than receive continued medical treatment is highly problematic. What we are seeing in the Charlie Gard case is that house of cards collapsing.

It would have been far better to argue in the Gard case that it was not an appropriate use of limited resources to provide £150 000 or more in intensive care for a treatment which at very best has a 10% chance of providing some improvement but is unlikely to every bring about a cure.

Likewise, in many patients with advanced neurological disease and dementia, they will require artificial feeding, often for months or years. Rather than saying they are better off dead, it is more justifiable to say that the high cost of artificial feeding and nursing home is not worth providing when a person is barely conscious.

If justice is the grounds for treatment limitation, then it opens the door to people to pay for their own “near-futile” treatment. But that is as it should be.

Of course, the case of Charlie Gard is different to the case of Donald Wills because Wills did express a desire to be treated in the circumstance, as did Leslie Burke (and that was overridden). Perhaps Burke’s previous wishes ought to be given greater weight. But why not then give greater weight to Charlie Gard’s parents’ wishes? This is especially so given that other reasonable people have supported their wishes.

What we might all fear is that doctors and Courts might withdraw our life support too, as they are doing with Charlie and Burke, even when we explicitly say we would want to be kept alive in that circumstance. I find it fair for society to say, “You have had your go and now we can’t afford to keep you going any more.” Fair enough. We can’t expect society to provide a low chance of life of very low quality, perhaps for a relatively short time.

I would find it deeply problematic if a Court or a doctor were to tell me my life is not worth living, especially when they have no coherent, developed or operationalisable concept and I have spent more than 20 years studying what makes life worth living! The “balance sheet” approach can go either way, depending on how one weights the items. I don’t believe it is enough to say, when it is a life and death matter, as Judge Hedley did say,

‘The infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in a definition of best interests’

And here is the clincher – if I were in Charlie Gard’s situation I say it is in my interests to give me the experimental treatment. Now, doctors and Courts, what will you do if I am?

Interim Conclusion: Justice, Not Interests

Burke and Wills were also two actual English explorers who died in 1861 trying to traverse the Australian continent from south to north. Perhaps we should abandon the expedition of trying to traverse the continent of a life worth living. Better to make comparative judgements rather than absolute judgements about the value of life. Better to stick to distributive justice, not best interests, as a way of limiting medical treatment. But egalitarian concerns should not prevent people using their own funds to secure treatments which are plausibly in their interests, even if many doctors disagree.

Final Conclusion: Jaymee Bowen and Charlie Gard

In 1995 Cambridge Health Authority was taken to court.  The Authority had refused to make NHS money available for a second bone marrow transplant, following an unsuccessful bone marrow transplant for a 10-year-old girl (“Child B” or Jaymee Bowen), suffering from leukaemia.  The estimated cost of the treatment was £75,000.  In the view of the Health Authority, the treatment had little chance of success.  This view was based on her own doctor’s opinion backed up by specialists from the Royal Marsden Hospital in London. The initial justification was that treatment was not in the child’s best interests.  Her doctor said, “it would not be right to subject her to all this trauma.”  The Health Authority wrote to B’s parents that the decision was taken with “B’s best interests in mind” and not “on financial grounds.”

However, a specialist from the Hammersmith Hospital in London believed that a further course of treatment was worth attempting. The chances of inducing a remission were put at 5%, and the chance of cure less.  Her father objected to the Trust’s decision.  He believed that a 5 % chance was worth taking.  Cambridge Health Authourity refused to fund the extracontractual referral.

When the case came to court, the Health Authority changed its tune.  It said that treatment would not be “an effective use of resources”, that its funds were “not limitless” and that it had to consider the interests “of other patients.”  On the basis of guidance from the Department of Health in relation to funding unproven treatment, the Authority decided: “the substantial expenditure on treatment with such small prospect of success would not be an effective use of resources”.

When the case was heard in the High Court, the judge (Laws) said that Child B’s fundamental right to life required that the Health Authority show compelling objective reasons for giving other patients priority over her.  He said that it was not sufficient to state merely that resources were limited.  He said, “the responsible authority … must do more than toll the bell of tight resources.”

However, this viewpoint was not upheld in the Court of Appeal.

Sir Thomas Bingham, Master of the Rolls, said, “Difficult and agonizing judgments have to be made as to how a limited budget is best allocated to the maximum advantage of the maximum number of patients.  That is not a judgment the court can make.”

(R v. Cambridge Health Authority, ex p. B [1995] 2 All ER 129, 133 (CA))

Jaymee Bowen was denied a second transplant by the court. However, she did end up receiving one after support from a private donor. The transplant was not prevented in her best interests. The same principles should have been applied to Charlie Gard.

 

 

*Savulescu, J. and Kahane, G. (2009). ‘Brain-Damage and the Moral Significance of Consciousness’. Journal of Medicine and Philosophy. 34(1): pp 6-26. doi:10.1093/jmp/jhn038

Wilkinson, D. and Savulescu J. (2012). Commentary: Is it Better to be Minimally Conscious than Vegetative? Journal of Medical Ethics J Med Ethics medethics-2012-100954 Published Online First: 1 September 2012doi:10.1136/medethics-2012),

[1]  Portsmouth Hospital NHS Trust, n 1 above.

[2] That is, the notion that ‘….best interests encompasses medical, emotional and all other welfare issues’: Re A (Male Sterilisation) [2000]1 FLR 549.

[3] Portsmouth Hospital NHS Trust, n 1 above, at para 23.