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.