The patient vanishes

by Dominic Wilkinson

If a patient’s family refuse to allow withdrawal of breathing machines should doctors provide long-term support in an intensive care unit for a patient who is clinically brain dead? Should doctors provide heart-lung bypass (ECMO) for a child with anencephaly? Should doctors perform a tracheostomy and provide a long-term breathing machine for a patient in a documented persistent vegetative state?Despite difficulties in pinning down what constitutes ‘futile’ treatment, I would confidently predict that the above three cases would be regarded as beyond the pale by most people. Requests for such treatment would be resisted or opposed by the majority of doctors, at least in countries such as Canada, Australia and the UK.

One of questions that surfaces whenever disputes about medical futility arise, is whether resource constraints are affecting doctors’ judgement about whether or not treatment is worth continuing. As Julian Savulescu and I have argued elsewhere, there are only two ultimate reasons for refusing to provide treatment that a competent patient or their surrogate requests – either that it would be harmful to the patient, or that it would harm other patients by preventing them from accessing a scarce medical resource (see also here and here for earlier blog posts). One way of working out how big a factor resources are playing in decision-making is a simple thought experiment: imagine that we had limitless health care resources, would we or should we still oppose the provision of the desired treatment?

In fact, this thought experiment is not just theoretical. In the last week, a paediatric futility case in North America entered this realm. Baby Joseph Maraachli is a 14-month old infant who has been diagnosed by doctors as having a persistent vegetative state. He has been in a Canadian intensive care unit for about 5 months. His parents had wanted his breathing machines to be continued, however, baby Joseph’s doctors have wanted to withdraw the breathing machine and allow Joseph to die. The doctors’ decision was supported by a Canadian Consent and Capacity board, and by the Ontario superior court of justice. However, on the 14th of March Joseph was flown to a private hospital in the United States. The transfer and hospital care are being funded by pro-life groups in the US.

Is it a bad thing for patient like Joseph Maraachli to have a tracheostomy and receive long-term mechanical ventilation? Without wanting to go into the specific details of this case, if he is truly in a persistent vegetative state (PVS) it is hard to see how he would be harmed by a surgical procedure to insert a breathing tube in his neck. Patients in PVS do not appear to be able to perceive pain. Even if Joseph were able to experience pain, it would and should be possible to provide anaesthesia and analgesia perioperatively to minimise this chance. Are there other harms for Joseph of performing this procedure? We might worry about less tangible harms, for example, whether it is treating Joseph with dignity to perform this operation, and keep him connected to a machine. However, there are some similarly intangible benefits that his parents might see in treatment being continued, including the value of life on its own. Although doctors like me might feel a deep sense of unease about the type of life, and the type of death that we are providing for baby Joseph, it is not clear how much weight we should give to that queasiness if we are confident that Joseph himself is not going to suffer.

In fact, it is a feature of all of the cases that I mentioned at the start, that the patient-centred reasons to resist futile treatment seem to vanish. In all of those cases we have good reason to think that the patient is and will always be completely unaware of their treatment (and of the controversies raging at their bedside). Continued treatment can neither harm nor benefit them. The only strong ethical reason to oppose providing an intensive care bed, or the ECMO machine, or a tracheostomy and breathing machine is that these are precious and limited resources, and should not be used where the potential benefit to the patient is negligible. Since Baby Joseph has now been spirited away from the Canadian public health system and into privately funded care in the US, the strongest reasons to oppose continued treatment have also vanished. In a sense, the ethical dilemma has disappeared.

But, while the patient centred reasons to avoid treatment are absent in this case, as in the other ones listed above, the patient-centred reasons to provide treatment are also absent. In futility disputes of this sort (and perhaps in others), there is a disquieting sense that the dispute is not about the needs of the patient, but about the needs of family members. In this case, and in others, (for example Terri Schiavo’s) there also appear to be wider political and religious disputes that are being played out at the bedside. And that cannot be a good thing.

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4 Responses to The patient vanishes

  • Emily says:

    It seems to me that this particular patient 'vanished' quite some time ago. Joseph Maraachli is blind and deaf, he cannot breathe or swallow on his own, and he does not have faculty of his 5 brain stem functions. While he may not be able to experience pain, he is most likely not able to experience anything else, either. Numerous doctors in Canada, the US and Europe have stated that this child has absolutely no chance of recovery. He has been kept 'alive' for the past five or so months by a ventilator and feeding tube; and while a breathing tube inserted via tracheotomy may keep him alive for another six months, he will eventually succumb to pneumonia and bedsores. I cannot imagine how keeping this child's body in limbo is justifiable.

  • Aroop says:

    There are many points raised by Wilson and the related stories and comments.

    A. There has been a lot of discussion about who should do what for patients who have no chance of recovery. I will not go into that for now. I have a related question about groups that want life support continued for someone with no chance of improving. These groups (Wilson used the term "pro-life groups in the U.S.") must have some reason to prolong the agony of the child, the parents and the health care providers. What do they think is gained by such actions and such a stance. Is death so bad? If they are religious, why are they afraid for the child to meet his maker? These questions have puzzled me. Please help.

    B. I agree the Terri Schiavo case had wider political and religious overtones to it. The "religious right" (what exactly it means, I will never know) tried politics to override the husband's authority as her surrogate to speak on her behalf. The politics and "wider political and religious disputes" were brought in by people with thinking similar to the "pro-life" group mentioned by Wilson.

    C. A third point relates to the comment by Rebecca Dressler that the U.S. courts generally side with families in such cases that want to continue treatment for loved ones even in seemingly hopeless medical cases….I would be interested in knowing about such cases because it is a question often asked of me.

  • veterinaryperspective says:

    Just to give an alternative perspective, as vets we face this kind of decision all the time – and whilst I would not seek to equate the value of a human life with that of a dog or cat there are some similarities in our experience of this decision.

    I would add to the potential harms of indefinite "futile" treatment – the effect on healthcare professionals caring for the patient. In the veterinary environment, where euthanasia is a rather common outcome where there is serious disease or injury, we occasionally manage patients belonging to owners who (because of their personal belief system) will not consider euthanasia. We also occasionally offer more intensive or invasive treatment than "usual" where owners are very demanding and/or we consider that there is a good possibility that this will lead to recovery. Both these situations can result in significant disquiet and distress amongst our nursing and animal care staff which has to be handled by good communication and explanation of what is happening and why. I fear that nursing staff and doctors who are not ultimately making the decision whether to provide this treatment or not but are required to provide the actual care to the patient may find this similarly distressing over a long period.

    There also appears to be an all-or-nothing assumption in the piece about the disappearence of the "patient-centred reasons" to resist futile treatment. It strikes me as somewhat simplistic to consider that the patient not being able to perceive pain means that there is nothing about their life that could be considered "suffering". If there is suffering then there is clearly still a "patient-centred reason" to end suffering.

  • Dominic Wilkinson says:

    Aroop, you ask why some religious groups want to "prolong the agony of the child, the parents and the health care providers". I don't think that these individuals want to prolong anyone's suffering. (In any case, as I have suggested above, in these special cases the suffering of the child is not at stake). They believe that we have a duty to prolong life whenever we technically can. I am reminded of something very apt written by the Jesuit ethicist John Paris about the Schiavo case (
    "Richard McCormick, who was the great Catholic moral theologian of the last 25 years, wrote a brilliant article in the Journal of the American Medical Association in 1974 called “To Save or Let Die.” He said there are two great heresies in our age (and heresy is a strong word in theology—these are false doctrines). One is that life is an absolute good and the other is that death is an absolute evil. We believe that life was created and is a good, but a limited good. Therefore the obligation to sustain it is a limited one."
    I agree

    Veterinaryperspective – thanks for your comment
    I have argued in another post that the 'professional reasons' not to provide futile treatment don't have independent weight. ( I agree that as health professionals we find it distressing and disturbing to provide treatment that we believe is not of overall benefit, or is harmful. But the important ethical issue is about the harm either to the patient, or to the others, of providing that treatment.
    Let us imagine a 'wealthy owner case' – to provide a suitably veterinary example. In this case, an animal is in a coma from an isolated severe head injury (following trauma). The owner is a billionaire, happy to pay for prolonged mechanical ventilation in the vain hope of recovery. Would there be a good ethical reason not to provide it? If we are worried about the animal suffering we could provide high dose opioid infusions while he remains ventilated.
    I am not defending the wealthy owner's actions. I think they are extremely foolish, and that he/she should be strongly counselled against using his money in this way. But if the owner did choose to pay for treatment, should we refuse to provide it/continue it?
    One point, raised by Peter Singer, is whether there is an ethical reason to object to wealthy individuals spending large sums of money on what appears to be futile treatment. ( Singer would argue that the wealthy owner's actions are ethically problematic – not because of the treatment itself, but because of the large number lives that could be saved or materially improved if the money were used instead to improve the lives of the world's poorest (humans). Singer's point then does generate a separate ethical objection to privately funded futile treatment. However, this objection is no different to an objection made over the purchase of an expensive care, or an expensive house.
    As for your comment that I am too quick to dismiss patient-centred reasons. I agree that this is not all or nothing. There is a spectrum, with some patients having greater capacity to suffer as a result of treatment, others (because they are less conscious/less aware) have a lesser capacity. But there is good reason to believe that sometimes there is 'nothing'. Patients who are in a persistent vegetative state, or who are anencephalic, or who are brain dead, have no capacity to suffer. (There might be other concerns about non-conscious interests, for example, in having one's previous wishes respected, or in being treated in a dignified way. The idea that you are getting at is that it may be possible to harm someone without them being conscious of that harm. I accept that such harms are possible. However, they are rarely relevant in these sort of cases either because it is claimed/believed that the patient would have wanted this treatment, or because the patient has never been in a position to express their own wishes and values).