My grandmother suffered an intracranial hemorrhage that left her severely brain damaged and unable to communicate. With no living will or documentation regarding her medical treatment, we were left with the difficult task of deciding the course of her medical treatment. Breathing tubes, feeding tubes, and several other long-term medical decisions needed to be made without my grandmother being able to explain her wishes. It is a situation that roughly 30% of patients with life-threatening conditions find themselves in.
For months, my grandmother lived on a number of medical machines that kept her alive, lungs breathing and heart pumping. She made no improvement cognitively and remained fully dependent on mechanical ventilation. With a heavy heart, my grandfather and his children reached the difficult conclusion that she would not wish to be maintained on machines indefinitely. She was removed from life support and passed away shortly thereafter. While I agree with the decision they made, not everyone sees it the same way. Is ending a life willingly ever right? Or is maintaining a human being indefinitely on life support just as unethical?
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The key element in end-of-life decisions is respecting the patient’s autonomy. I summarize here some principles that may be helpful. They include the principle of joint autonomy, the principle of interference, the principle of implied consent, and the principle of informed consent.
Let’s first dispose of the idea that withdrawing life support is not the same as causing someone’s death. Suppose your job is to deliver meals to prisoners, and one day you decide to stop delivering the meals. If they starve as a result, then you killed them. Withdrawing life support causes death, which is normally a violation of autonomy. However, it may not be a violation of autonomy when the patient is terminally ill, unconscious and unable to communicate.
The principle of informed consent is often applied to such cases, as witnessed by the push for living wills that occurred some years ago. The living will is supposed to provide informed consent to withdrawing life support. However, the steam has gone out of the living will movement, mainly because we now realize that people can’t give consent without knowing the specific circumstances, and these circumstances are impossible to predict — especially as medical technology advances.
Patients sometimes foresee how their particular disease is going to progress and give instructions on that basis. This might viewed as informed consent, but even here we have problems. Informed consent is valid only if it is a deliberate, freely chosen action. An action is freely chosen only if it is part of a coherent action plan and has a coherent rationale. This is how we distinguish free action from mere behavior that has only physical and biological causes.
An action plan that includes one’s own destruction is arguably incoherent. One can’t rationally will one’s own death, because this destroys agency, which is irrational by definition because it is inconsistent with any conceivable action plan.
One might escape this problem by supposing that at some point, the patient has “given up” and literally has no action plans (the same point applies to the ethics of suicide). Of course, one need not be conscious to have intentions or plans. We can correctly say of someone who is asleep or unconscious that he or she plans to retire early, etc. However, it may be reasonable to suppose that an unconscious person with no prospect of recovering consciousness has no intentions of any kind, and so ending life does not destroy agency.
On this analysis, the key factor is not whether the hospital has implied or informed consent to ending life, but whether one can reasonably say that the patient has no intentions or plans. One might say this when there is no hope of recovering consciousness.
In many terminal cases we don’t know with absolute certainty that a patient won’t recover consciousness. The question for ethics is whether there is hope of recovering consciousness. If we have lost hope, then life is over.
Cases in which a terminally ill patient is conscious and undergoing unbearable suffering are more difficult. To justify ending life support, the patient must convincingly indicate that this is not only a deliberate choice with a coherent rationale, but that he/she has given up on life and has no intentions whatever for the future.