Should nutrition and hydration be provided to permanently unconscious and other mentally disabled persons?

• Author: Grisez, Germain

The title of this article can be understood either as a legal or as an ethical question. It is treated only insofar as it is an ethical question--that is, a moral issue.(1) But it is the author's hope that this discussion will contribute to the current debate about what law ought to require in this matter, for, of course, questions about what law should require are, at least in large part, moral questions.

In its reflection on moral questions, ethics has a task very different from that of legal studies, which focus on the making and application of social rules. Ethics tries to discover what is good and right for persons and groups of persons, considered insofar as they are agents. In other words, ethics tries to learn the truth about what ways of acting will make persons and communities truly flourish. Thus, the aim of this article is not to try to use ideas and words to channel anyone's behavior, but to articulate the author's own effort to arrive at a sound view on the question, in the hope that doing so will help others who want to know what they ought to do about it.

"Permanently comatose" is understood to refer to all who are in fact permanently unconscious, no matter what their specific condition is or its underlying cause.(2) The author presupposes that even comatose human individuals are persons.(3) For brevity's sake, the single word comatose shall be used to refer to the permanently unconscious, and the single word food to refer to nutrition and hydration.

For the purpose of this article, two types of cases are excluded from the discussion: First, sometimes a choice is made to kill someone, and that choice is carried out by withholding food. It seems that this is exactly what has been done in some of the widely publicized cases. Now, if food is withheld precisely in order to kill someone, that calculated omission is homicide and cannot be morally justified. The author has argued this view elsewhere and shall not repeat those arguments here.(4)

Second, sometimes a comatose or other mentally disabled person is dying, and providing food will not prolong life or give the person comfort, but perhaps even will increase discomfort. The author agrees with the general consensus that in such cases food should not be provided. Just as is true of any other sort of care or treatment, the reason for providing food is to benefit the person being cared for; therefore, when doing so is no benefit, and perhaps is a burden, it is not reasonable to continue trying to provide food.

Also set aside is the method of feeding called "total parenteral feeding" or "hyperalimentation."(5) It differs significantly in its burdens from other methods of feeding and is used in few if any cases to sustain comatose persons. So, it is not considered relevant to the general question to be treated here.

Thus, this article concerns only cases of the following sort: no choice is made to kill the comatose or otherwise mentally disabled person, the person is not dying, but the burdens of care and its limited benefits make some or all of those concerned wonder whether it is right to continue providing food.

A Change of Mind

In 1986, the author published a lecture which dealt with the issue of feeding persons who are comatose. That lecture stated:

If a patient is not in imminent danger of death but is in an

irreversible coma, as the late Miss Karen Quinlan was, life-support

care more sophisticated than ordinary nursing care is

very costly. It seems to me that such costly care exceeds a

permanently comatose person's fair share of available facilities and

services. Thus, I believe that when Miss Quinlan was removed from

intensive care, she ought not to have been placed in a special care

facility, but should instead have been sent home or cared for in

the hospital with only the sorts of equipment and services

available in an ordinary household. These do not include feeding by

tube, and Miss Quinlan could not be fed otherwise. Thus, if I am

right, she should not have been fed. Not feeding patients in

irreversible coma would cause their early death, and it would be

wrong to omit feeding them to hasten their death. But a proxy

could decide against care in a special nursing facility out of

fairness to others, and accept the patient's death as a side effect.

Does it follow that no one is entitled to a lifetime of care,

including feeding by tube, at the level Miss Quinlan received?

No, because the same principle of fairness by which the cost of

that level of care is excessive for people in irreversible coma will

require as much or more care for many other patients. This can be

seen by applying the Golden Rule, which expresses what fairness

demands, to various cases. We all know that each of us might

sometime be in irreversible coma, might sometime need public

funding of long-term treatment for some other condition, and

must always pay taxes. I think we can honestly say that we are

willing to limit treatment of ourselves and those we love, if ever in

irreversible coma, to ordinary nursing care, without feeding by

tube. By setting this limit, we will keep publicly funded special

care facilities free for other patients, and avoid increasing taxes to

provide additional facilities of this sort. But if we or someone we

loved were conscious and able to do some good things and have

some good experiences, we would want a lifetime of care at or

even above the level Miss Quinlan received, including feeding by

tube, if necessary, and we would want public funds to be

available for what was needed. Hence, we cannot fairly limit others'

care if they are in this condition. Nor can we reject the taxation

required to provide facilities for such people.(6) The author continued to hold this view until quite recently, and thought that it was not reasonable to provide food to persons who are comatose. However, the author's present position is that in our society food should be provided as a rule even to such persons. Six considerations led the author to change his mind on this matter.

First, it was assumed that the class of comatose persons is well defined and that members of the class usually can be picked out easily and with certainty. But there is conflicting testimony by various experts in some of the widely publicized cases. The author has discussed the problem with specialists in neurology, and as a consequence, it now seems that comatose refers not to a clear-cut type of case but to a spectrum of cases, in which damage to the nervous system has resulted from various causes and varies considerably in degree. Thus, serious difficulties arise in the attempt to make a diagnosis.

Second, it was assumed that feeding a comatose person by tube is in itself complicated and difficult, so that such a person could be cared for only in a special care facility. But in personal conversations, nurses experienced in home health care have stated that this is not so. Some families care for comatose family members at home.

Third, it was also assumed that feeding a comatose person by tube is in itself expensive. But there is a distinction between the cost of feeding such a person and the total cost of caring for that person. Most of the cost is for other elements of care: providing a room with suitable furnishings and equipment, keeping it warm, having someone present to do everything that must be done (not only to provide food), and so forth. The food itself costs very little, and those who care for persons who are comatose spend only a small part of their time in feeding them.

Fourth, it was believed that once a person is comatose, the only human good at stake is his or her life. But, in talking with people about family experiences in caring for persons with mental disabilities, the author realized that a family has personal reason to care for its members and not abandon them. People find it hard to articulate this personal reason, but it amounts to something like this: Caring for people--especially providing food and other elemental forms of care--affirms their dignity as persons, expresses benevolence toward them, and maintains the bond of human communion with them. Therefore, if even a comatose individual is a person, feeding that person also serves this personal good, which shall be referred to as the good of human solidarity.

Fifth, it was assumed that tube feeding is used only to sustain persons who cannot ingest food in the normal way. But physicians and nurses who are directly...