Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.

His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.

“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.

Ethics of Limitation of Life Prolonging Medical Treatment

In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:

1. the patient autonomously refuses it. (autonomy)
2. continued life is no longer in the patient’s interests (best interests)
3. the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)

Sometimes treatment is withheld or withdrawn because it is “futile.” Dominic Wilkinson and I have argued that although futility is often said to refer to “best interests”, it is more appropriately interpreted as a justice justification for limitation, that is, criterion 3. The reason we have argued this is that the best interests justification (2), requires that doctors establish that life is no longer worth living. That is, that the person would be better off dead. This is a very difficult standard to establish, even if the concept of a life not worth living is coherent. Justice does not require that we establish where the line of of a life worth living is. It only requires a comparative judgement – that compared to other uses of a limited medical resource, this use is not justified. The NHS has thresholds for cost-effectiveness that it routinely employs. A justice justification for limiting life prolonging medical treatment only requires an extension of this every day approach. For example, a treatment which has a 1/10,000 of prolonging a person’s life is a lower priority than a treatment which has a 50% chance of extending life. We need not say that the first treatment is “futile” or confers no benefit to the patient. We need only say that it is very poor value for money.

Decisions about Children and Other Incompetent Patients

In cases involving children, babies (such as Charlie Gard), or others without capacity, the first justification is not available – that is, the patient lacks capacity to autonomously refuse further treatment. In such cases, the court is asked to make a decision about what is in the best interests of the patient. This is a different decision than a substituted judgement for what the patient would want if they had capacity, although of course when adult patients lose capacity, their prior known wishes are an important factor. Explaining the basis on which he could override the parents, the judge said:

“although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

Best interests apply across a number of decisions around children, for example in family law cases, when two parents might reasonably disagree about decisions affecting a child the court is asked to choose which option is in the child’s best interests: which on the balance of probabilities will lead to the best outcomes. However, in a case involving limitation of life prolonging treatment, one option ends the life of the child.

The judge relied on best interests as laid out in a previous judgement (Wyatt v Portsmouth NHS Trust):

“In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child’s best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the child. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term “best interests” encompasses medical, emotional, and all other welfare issues.”

The critical issue is in this case is how to define “best interests.” For example, here is a UN definition of best interests:

According to the UN Convention on the Rights of the Child, assessing the best interests of a child means to evaluate and balance “all the elements necessary to make a decision in a specific situation for a specific individual child or group of children”.^[1] Due to the diversity of factors to consider, usually more than one profession or institution is involved in the assessment process, bringing together various perspectives and areas of expertise from the country of origin and destination and, in particular, the perspective of the child. The following aspects are relevant for the best interests of the child:
The child’s views and aspirations;
The identity of the child, including age and gender, personal history and background;
The care, protection and safety of the child;
The child’s well-being;
The family environment, family relations and contact;
Social contacts of the child with peers and adults;
Situations of vulnerability, i.e. the risks that the child is facing and the sources of protection, resiliency and empowerment;
The child’s skills and evolving capacities;
The rights and needs with regard to health and education;
The development of the child and her or his gradual transition into adulthood and an independent life;
Any other specific needs of the child.^[2]

None of these criteria clearly direct us to answering the question of when a child would be better off dead.

When Is Death in a Patient’s Best Interests?

In Charlie Gard’s case the possibility of experiencing pain from ventilation, suctioning, and other medical reasons was cited as a negative aspect of his well-being. But there are highly effective forms of analgesia, sedation and anaesthesia for these routine medical procedures. No one suggests that the discomfort associated with such procedures is a reason not to offer them.

Perhaps there is some other negative aspect to Charlie’s life such that it makes it the case he would be better off dead. Epileptic fits, perhaps. But again, these can be controlled with deep sedation.

Perhaps the argument is that in other cases of severe illness, the positive aspects of medical treatment outweigh these negative aspects, but in Charlie’s case there would be no positive aspects because of his profound cognitive impairment.

There are some conditions which I would regard as a life not worth living. One such condition is severe dystrophic Epidermolysis Bullosa. This is one of the candidate conditions for neonatal euthanasia in the Netherlands. In this congenital condition, the skin relentlessly peels off, causing extreme pain and infection. In the most severe forms, the child often dies of infection in the first year of life, even with maximal medical therapy. It seems wrong to live a very brief life of severe suffering (even if it can be almost entirely relieved) for no benefit.

Yet Charlie Gard’s case is different. He would not necessarily die in the first year and we don’t know for certain what level of cognitive function he might finally gain. It is true doctors are confident but it is important to remember that at one stage, according to the summary of the judgement,  “Great Ormond Street Hospital, where Charlie was being treated, got as far as deciding to apply for ethical permission to attempt nucleoside therapy, a treatment that has never been used on patients with this form of MDDS. But by the time that decision had been made, Charlie’s condition had greatly worsened and the view of all there was that his epileptic encephalopathy was such that his brain damage was severe and irreversible, that treatment was potentially painful but incapable of achieving anything positive for him.” This delay, if caused by the ethics process, would be another example of “lethal ethics”.

But can we be certain it is too late for anything positive to come about from treatment. To be sure, the odds are vanishingly small. But if they are not zero, why not have a trial of treatment for several months, or a year, under strict pain control (which we are told is so effective in palliative care)? The parents seemed to accept that Charlie’s current state was not one which was worth prolonging and if no progress was made, one could stipulate that treatment must be withdrawn. (There are clearly problems with jurisdiction in the US but the resources anyway would be finite as Charlie presumably does not have US health insurance.)

Is a month or year of experimental treatment that offers a slim chance of improvement clearly against his interests? This seems a different kind of case to the case of severe Epidemolysis Bullosa, where death and suffering are inevitable.

It is important to remember that this is no longer a choice between two futures. After death, there is no future that the decision can enhance. There is no patient and they no longer have any interests. There is only one pathway that the patient can be placed on.

If the treatment might be successful but will lead to a very severely impaired future, perhaps with multiple disabilities, it would still be in the patient’s best interests to proceed. There is no other future available to the patient. In order for treatment to be withdrawn on this ground, it would have to be shown that the individual is not merely severely disabled but living a life which is worse than death. This is both conceptually and empirically very difficult to prove.

The judgement thus seems to assume that a life with severe cognitive impairment is a life which is not worth living. This is highly controversial and difficult to defend in any precise way. I have spent over 20 years studying these issues and although I believe there are some lives which are not worth living, such as epidermolysis bullosa, I can’t say how cases like this can be said to be not worth living.

The basis on which many adult patients are allowed to choose to die is different. Adult patients may choose to have treatment withdrawn, even if that means their death, and it is not unusual for patients to make this choice. I have argued that voluntary euthanasia should be legalised in addition, so that patients whose suffering is unbearable for them, but whose disease is not immediately fatal without treatment may choose to die. The argument for both of these is based on the autonomous choice of the patient. Whilst euthanasia- where patients could make an autonomous choice to die –  is still controversial, it is a basic tenet of medical ethics that patients should have the ability to autonomously consent to – or refuse- treatment, and more broadly dictate how their life goes, and ends.

If we reject best interests as a basis for withdrawal of treatment, it would not mean that the decision to withdraw treatment could never be justified. If treatment is “futile”,-that is there is a vanishingly slim chance of meaningful improvement-, then treatment might be withdrawn on reasons of justice, so that the resources can be used for others with a better chance of survival, or a longer life, or a much better quality of life. That is, it is not worth spending hundreds of thousands of pounds trying to achieve a tiny improvement.

But now we arrive at the problematic aspect of the case of Charlie Gard. The most appropriate justification for limiting his life prolonging medical treatment would be on grounds of distributive justice. However, if an individual, or his parents, are willing to fund that treatment themselves, then arguments for limitation of medical treatment on distributive justice grounds would not apply. This was precisely what Charlie Gard’s parents were proposing. It would have been a very plausible argument that there much better uses of severely constrained NHS resources than providing continued artificial ventilation and expensive intensive care, together with experimental treatment to Charlie Gard. But that was not the argument of Great Ormond St, the doctors or the judge. Instead, they relied on the concept of death being in Charlie’s interests. While I believe that is a possibly sound argument, I have to admit I am not convinced it applies in the case of Charlie Gard.

Here is a thought experiment to put pressure on that argument. If life is really not worth living, it is cruel to allow an individual to continue to live. It is better for that individual to die. Now imagine euthanasia was legal in the UK, as it is the Netherlands. And imagine Charlie does not need medical treatment to keep him alive, though his cognitive impairment is the same. His parents are willing to feed him and keep him alive. If his life were really not worth living, the Court ought to order  euthanasia in his interests. But that would be wrong.

Of course, one might respond in this fictional version, there are no burdens of medical treatment to cause Charlie to suffer. But are the burdens of medical treatment, with modern pain relief, sedation really that great? I find it hard to believe, especially when we see people who spend their lives on artificial ventilators saying their lives are worth living.

Here is another thought experiment. Imagine that we discovered a baby like Charlie Gard in the US with an identical condition. However, he was already being treated with experimental treatment. Would we think it cruel and unusual, a kind of torture, such that treatment should immediately be stopped so that he could “die with dignity”? I doubt it. Such experimental treatment, under sedation and analgesia, would continue for a period of weeks or months until it was clear whether it was providing a benefit.

Taking best interests alone, the slim chance of life is almost always more in the patient’s interests than a definite death. Where an experimental treatment exists, steps ought to be taken to minimise the suffering and side effects of the treatment. However, when the alternative is death, the most appropriate justification for denying treatment is justice, not that it is in the best interests of the person to die. And when an individual, or others on their behalf, is willing to fund the full costs of the treatment, the argument from justice does not apply.

Of course, in the case of Charlie Gard, it is possible that the treatment might have some effect or that he could continue to live for a long time in a severely brain damaged state with the support of mechanical ventilation. If long term mechanical ventilation does not provide sufficient benefit to warrant its high cost, that would be a reason to deny life prolonging medical treatment. But it is not a reason to prevent his parents taking him to the US to take the one chance of a better life, even if that chance is very small.