Should minimally conscious patients be allowed to end their lives?

Two recent articles by neurobiologist and science writer Mo Costandi raise ethical quesions about the treatment of brain-damaged patients in the light of new research. Doctors distinguish between patients in a vegetative state, who are completely unresponsive and assumed to lack conscious awareness, and patients in a minimally conscious state, who some degree of responsiveness and are assumed to have some awareness – although it is unclear what their experiences are like and what mental abilities they have. A third category of patients are those in a “locked-in” state. These people are fully aware and awake, but paralysed and unable to communicate except through eye movements. Patients in a persistent vegetative state are highly unlikely to recover from it, and in most countries the law allows, under certain conditions, passive euthanasia for this group, for example by disconnecting a feeding tube that provides life support. But is this policy ethically defensible, and should we also allow euthanasia for patients with the other diagnoses?

Three further questions are obviously relevant here. First, should we ever be permitted to end the lives of patients who lack the ability to make their own autonomous decisions – and if so, when, and under what conditions? Second, should people with the ability to make autonomous decisions be permitted to decide to end, or to request assistance with ending, their own lives? And third, which of the above groups of patients are in fact able to make autonomous decisions?

The answers to the first two questions are controversial, and current law in most countries takes a very conservative attitude: medical professionals are not may not be allowed to withdraw life support from a patient who is conscious to any degree, even if the patient expresses a desire to have it withdrawn, and even if the patient has remote prospects of improvement, unless the patient has made a formal advance directive or refuses and is deemed presently competent to refuse medical treatment. Moreover, active euthanasia or physician assisted suicide is generally prohibited, even for patients competent to request it. It is not clear what the rationale is supposed to be for this position. Why is even minimal consciousness considered sufficient for granting individuals inviolable moral status, and even if it is sufficient, why shouldn’t anyone capable of making autonomous decisions be permitted full control over an important feature of their lives: the time and manner of their own deaths?

I won’t attempt to argue about these claims here (in fact, I think the arguments are more difficult than it may first appear), but I will instead focus on just the third of the questions above. Locked-in patients undeniably are capable of making autonomous decisions, and correctly-diagnosed vegetative patients undeniably are not capable, but what about minimally conscious patients? Researchers Adrian Owen and Steven Lawreys have used techniques such as EEG and fMRI brain scanning to examine patients diagnosed as vegetative and as minimally conscious, and they report that many patients diagnosed as being in a vegetative state are in fact minimally conscious. Moreover, Owen and Lawreys say that they have been able to establish rudimentary communication with some of these patients, receiving answers to simple questions from them. This prompts Costandi to raise the question: if patients in a minimally conscious state are found to be able to communicate an answer to the question whether they wish to be allowed to die, should we listen to their wishes? In other words, could they be capable of making an autonomous choice?

Owen and Lawreys recognize that these patients would need higher order reasoning abilities to properly answer a question of this kind, and they suggest that an inventory of mental abilities for such patients is needed to determine whether they have the capacity to make decisions about their own future. But should we be optimistic about whether such patients could make autonomous choices about their lives? I want to suggest that we should not. What distinguishes minimally conscious patients from locked-in patients is that they have a reduced degree of mental functioning. But human autonomy demands very high-order mental functioning. Making an autonomous choice requires the ability to express not just what one happens to desire or have some impulse to pursue, but what one values: it requires taking a reflective, normative standpoint. This is what makes human beings able to respond to reasons, in contrast to animals which are just pushed around by their desires.

In fact, we all know what it’s like to be pulled around by our desires or impulses. Consider how, in the heat of strong passion, or in the grip of addiction, or when drunk, or when half-asleep, we find ourselves doing things that we would never do under normal conditions. In situations like these, our reasoning becomes incoherent, we tend to lose sight of our values, and we tend to lose rational control over our decisions. These less than fully rational states are not appropriate conditions under which to make big decisions about our lives, and we would not want others to hold us to decisions we make while in these states. Like these other conditions, brain damage that leaves someone in a minimally conscious state must reduce their higher-order functioning at least to some degree. And correspondingly, we should be doubtful that anyone in such a state could be capable of making morally significant, autonomous choices – especially potentially irreversible choices like end-of-life decisions.

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6 Responses to Should minimally conscious patients be allowed to end their lives?

  • Crunk Bodangle says:

    Of course they should be able to end their lives. Suicide should not be a de facto right only of the able….

  • Anthony Drinkwater says:

    Hello Simon,
    On the precise question that you raise, your answer is certainly correct. The “minimal consciousness” described by Owen and Lawreys is very minimal indeed and it seems unlikely that it coulld ever meet the test of autonomous decision-making.
    A related interesting ethical question is : what should distinguish the treatment of these patients from that given to those in a “vegetative state”?
    This is perhaps an important practical question, as I do not doubt that if they continue to look hard enough, researchers will find that increasing numbers of patients previously categorised as “vegetative state” actually have some form of “minimal consciousness” (as it is defined by Owen and Lawreys). Which raises interesting questions about what does, or should, count as consciousness.

    • Simon Rippon says:

      Thanks for your comments Anthony. I agree about the importance of your ethical question. The courts seem to think that such patients have a special interest in continued living, though it’s not clear why. See, for example, the case of M that I referred to below, in my reply to Jez.


  • Jez says:

    “[in answer to the first two questions] medical professionals are not allowed to withdraw life support from a patient who is conscious to any degree, even if the patient expresses a desire to have it withdrawn, and even if they have remote prospects of improvement.”

    Could you explain this in slightly greater detail? I’m not entirely sure what kind of patient you are referring to; one without autonomous expression or one with minimal consciousness, or both; or neither! I was under the impression that conscious and autonomous patients have the right to refuse treatment?

    Many thanks


    • Jez says:

      In relation to UK law if that is possible.

    • Simon Rippon says:

      Hello Jez,
      Thanks very much for your excellent questions, and apologies for the delayed reply. You are quite right that competent patients as well as those who have made valid advance directives have a legal right to refuse medical treatment in the UK, the US and most other countries, where this includes artificial nutrition and hydration (feeding tubes) as well as other means of life support. I made an egregious error in the post about this and have edited it accordingly.

      Though I overstated it in the original post, the law is still conservative in these matters in at least two ways. First, it does not permit active euthanasia or assisted suicide even for competent patients: a patient with locked-in syndrome, for example, may refuse to have a feeding tube inserted (and thereby starve to death) but has no legal right (in the UK at least) to be assisted in achieving a painless death. Second, the UK courts are likely to rule that it is in the best interests of a non-competent minimally conscious patient for life support to be continued indefinitely, whatever the wishes of the family and whatever the family thinks the patient would have wanted, unless the patient has made a formal advance directive to the contrary. See e.g. the 2011 case of M: