The sad and difficult case of Charlie Gard, which featured in the media last week, is the latest in a series of High Court and Family court cases when parents and doctors have disagreed about medical treatment for a child. Doctors regard the treatment as “futile” or “potentially inappropriate”. Parents, in contrast, want treatment to continue, perhaps in the hope that the child’s condition will improve. In the Charlie Gard case, the judge, Justice Francis, rejected Charlie’s parents’ request for him to travel to the US for an experimental medical treatment. He ruled that life-sustaining treatment could be withdrawn, and Charlie allowed to die.
As Julian Savulescu argues,there are two different ethical reasons for health professionals to refuse to provide requested medical treatment for a child. The first of these is based on concern for the best interests of the patient. Treatment should not be provided if it would harm the child. The second reason is on the basis of distributive justice. In a public health system with limited resources, providing expensive or scarce treatment would potentially harm other patients since it would mean that those other patients would be denied access to treatment.
The importance of resources
When doctors and the courts consider cases of ostensibly “futile” treatment, they often focus exclusively on best interests. That is understandable, since the prevailing ethical and legal frameworks largely ignore the question of limited resources. The courts have no mechanism, statute or precedent, to allow them to assess whether or not a treatment would be too expensive or of too little benefit to provide it. Professional guidelines tell doctors that they should base decisions on the interests of the child.
In many cases, however, it is uncertain whether or not treatment would be in the interests of the patient. There may be much stronger and clearer arguments to limit treatment on the basis of finite and scarce medical resources.
Take, for example, infants with a severe congenital condition causing paralysis, spinal muscular atrophy. Infants with the most severe forms of condition are unable to breathe without the help of an artificial ventilator. They will be dependent on machines to breathe for the rest of their lives. They are unable to move, to speak. They may not even be able to open their eyes. In such cases, courts in the UK have decided that continued medical treatment would not be in the best interests of the child (see for example, this decision last year). Yet, in other countries long term artificial ventilation is provided for children with spinal muscular atrophy. Such children, though profoundly disabled, appear to value their lives, and judge it a life worth living. Life-sustaining treatment appears at least potentially in the best interests of a child with spinal muscular atrophy.
However, life-long artificial ventilation is extremely expensive. It is estimated to cost around £240,000 per year to provide home ventilation. This figure is almost ten times higher than the usual maximum cost of affordable treatment in the National Health Service.
To take an even clearer hypothetical example: a child with a relapsed form of cancer develops organ failure. Without a liver transplant he will die within a matter of weeks. With a transplant, he will potentially recover in the short term; however, given his cancer, he will nevertheless die within the next six months. Would it be in the child’s best interests to receive the liver transplant? Potentially. However, if the liver would match another patient, it would be unreasonable to give him the organ, it could harm someone else who misses out. There is a severe shortage of livers for transplantation. About 10% of patients on liver transplant waiting lists die before a liver is found. Ninety per cent of children who receive a liver transplant (in the absence of cancer) survive for at least 5 years.
Overlapping and diverging reasons
The different ethical reasons that might justify a decision not to provide treatment might come together, or they might come apart. The figure below shows the relationship between the two.
If treatment would be both affordable and in the child’s interests (region A in the figure), it should unquestionably be provided. If treatment would be neither affordable, nor in the child’s interests (region D), treatment should not be started or should be stopped. But sometimes the picture is more mixed. Perhaps long-term ventilation in spinal muscular atrophy is in region B, possibly in the interests of the patient, but unaffordable? In the Charlie Gard case, parents had crowdsourced funding to enable him to be taken to the US for treatment. That would potentially mean that the resource issue is not relevant. Perhaps then treatment would be in region C, affordable, but contrary to interests?
Best interests and life-sustaining treatment
Julian Savulescu argues that “taking best interests alone, the slim chance of life is almost always more in the patient’s interests than a definite death.” On that view, if resources aren’t an issue, there is virtually no situation when treatment would be contrary to the best interests of the patient. Is that right?
One way of thinking about what would be in someone’s best interests is to imagine a set of scales. On right side of the scales are the reasons in favour of a course of action – the benefits. On the left side of the scales are the reasons against. Which side is heavier? Which way will the scales tip?
Julian’s view that a slim chance of life is always better than no chance, would be correct if there were no down side to providing treatment. If it were a question of weighing a small chance of a positive outcome, against an empty scale on the other side, the balance would be tipped in favour of treatment, even if the chance (or magnitude) of benefit were tiny.
But there are often significant negatives in the balance. Those negatives can arise from the child’s illness, or from the medical treatment.
Being kept alive in intensive care is not pleasant. Although we do our best to provide pain relief, sedation, care and comfort to gravely ill children and babies, that ability is finite and imperfect. Children on long-term ventilation often appear uncomfortable at least part of the time. They have frequent needles and invasive procedures. They may be distressed and unable to communicate the source of their distress.
As Julian points out, we could remove all possibility of suffering from procedures or from a child’s illness by providing continuous deep sedation – perhaps akin to general anaesthesia. However, in taking such steps to remove the weight from the left side of the scale, we would also, in many cases, remove the positive reasons in favour of treatment, (the right side of the scale). If we are providing experimental treatment to a brain injured child, how would we know if it is working if the child is kept permanently unconscious? If, on the other hand, the reason to continue treatment is because it is judged that the limited conscious experiences available to a severely impaired child are judged to still give them a life worth living, anaesthesia would remove even these benefits.
Experimental treatment, best interests and children
The reason why these decisions come to the court at all is because we do not think as a society that parents’ have an absolute right to make medical decisions for their children. We do allow parents to make many decisions. Parents are given broad discretion about how to raise their children, how to feed them, how to educate them, whether or not to immunise them. Parents will not always make the best choices, but for the most part the state will not interfere or intervene. However, where parents’ decisions run a significant risk of causing substantial harm, their decisions must be challenged, if necessary in a court. For example, that is the reason why Jehovah’s Witness parents are not permitted to refuse a blood transfusion for their child.
When it comes to experimental treatment, there may be different views among health professionals about how to weigh up the chance of benefit against the burdens of the treatment. Some think that the chance is worth taking. Others may feel that standard treatment or no treatment is the better bet. In the face of such disagreement, the decision properly belongs to the parents. Assuming the treatment is affordable, (and the parents want it), it should be provided.
However, where no professionals think that the experimental treatment is worth pursuing and where parents’ request for treatment is unreasonable, they should be overruled.
Experimental treatment, best interests and adults
In treatment decisions for young children, the court focuses on best interests, because the wishes of the child are unknown. They can’t tell us their views, and we feel that it is important to protect the child from harm. The situation is different for adults, since they may be able to tell us their own views.
We might imagine, for examine, an adult equivalent of the Charlie Gard case, where a young adult had a progressive brain disorder and was now unconscious and dependent on life support in intensive care. In such a case, we would likely focus primarily on what we know about his views on treatment. An adult’s wishes might conflict with what would be in his best interests. He might have had idiosyncratic or unreasonable views. He might have made an unwise choice. But, as long as he had the capacity to make decisions, (and as long as the treatment option was affordable), we should try to respect those wishes. So, in this imagined version, if there is good evidence that the adult Charlie had wanted to be kept alive on a ventilator, if he would have wanted to pursue experimental treatment in the US, despite the apparently slim chance of benefit – treatment should be provided or continued.
These decisions about life-sustaining treatment for critically ill children are fraught and difficult for all involved. Parents are, rightly, at the heart of the decisions that are made daily in intensive care units up and down the country. Their views about treatment are important, and their wishes are usually followed.
However, there are limits.
Sadly, reluctantly, doctors and judges do sometimes conclude and are justified in concluding that slim chances of life are not always better than dying. Providing comfort, avoiding painful and unhelpful medical treatments, supporting the child and family for their remaining time. Sometimes that is the best that we can do, and the only ethical course.