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Ethical questions raised by the persistent vegetative patient.

Ethical Questions Raised by the Persistent Vegetative Patient

Ms. T is a twenty-eight-year-old patient diagnosed in a persistent vegetative state who has been in a hospital and/or its affiliated nursing home for the last two and one-half years. When she was twenty-five, she was in a motorcycle accident in which she suffered extensive head injuries. While she is able to breathe on her own and has some brainstem reflexes, she has been unresponsive since the time of her accident and has shown no other evidence of higher brain functioning, although she is certainly not brain dead. Most of the time she receives only nursing care: she regularly needs to have her airway suctioned to prevent secretions from blocking it, and she is regularly turned in bed to avoid bed sores. She is fed and she excretes through tubes. Her major medical needs arise from serious infections that require a careful workup and extensive antibiotic treatment. When necessary, she is transferred from the affiliated nursing home to the hospital, as was recently the case.

Ms. T's parents have been devastated since their daughter's accident. Ms. T is their only child, and they had taken great pride in all of her achievements. They cannot bring themselves to accept the fact tht she will never recover. They feel certain that with full and comprehensive treatment, she can survive for years. Hoping for an eventual miracle or for some medical advance, they want this level of treatment to continue. As things stand now, the family's life centers around their regular extended daily visit, where they sit at their daughter's bedside. Often they talk to her, begging her to respond to them. The futility of the situation has been repeatedly conveyed to Ms. T's parents, but they have insisted in the past, and continue to insist in this hospitalization, that their daughter's infection be managed aggressively. They report no conversations with their daughter about these matters prior to her accident.

Those who have to care for Ms. T are frustrated by the situation; they see her care as a waste of their time and a misuse of their abilities. They also feel her parents would benefit from Ms. T's death, as they then could attend to their own lives. Finally, they are worried about the cost to society of continuing to provide care to Ms. T. Since her insurance coverage expired long ago, the entire cost of Ms. T's care now falls upon a public hospital with a limited budget. The staff believes that the provision of care to many other patients is impeded because of the allocation of time and resources to Ms. T.

This story is actually a composite of several real cases that I have been following for some years. The account brings together most of the special features of each case that give rise to major ethical issues. Among the most prominent issues raised by Ms. T's case are the following:

(1) Regardless of how the current statutes define brain death, is this patient really dead? What are the implications of such a determination? Would that at least mean that all further care could be withdrawn? What if the parents continue to object?

(2) Suppose the parents agreed with the staff that their daughter should be allowed to die. What forms of care could be withdrawn? Antibiotics? Food and fluids?

(3) If the parents do not change their minds, and Ms. T does not satisfy criteria for determination of death, could care be withdrawn against the parental wishes? Could the parents be requested to find other caregivers to provide the desired level of care?

Pluralistic Casuistry

In thinking about serious ethical issues raised by real medical cases, it is important to ground the process of reasoning in some basic theoretical structure. The approach that seems most useful is the model of conflicting values. According to this model, there are a number of very distinct but equally legitimate and nonreducible moral appeals that need to be employed in the evaluation of a particular case. These include an appeal to the consequences (for the patient, for their family, for the providers, and for society as a whole), an appeal to rights (substantive negative rights, such as the right not to be killed, substantive positive rights, including the right to be aided in life-threatening situations, and procedural rights such as the right of a competent patient, or of his or her surrogate when the patient is incompetent, to refuse health care), an appeal to respect for persons, an appeal to various virtues (integrity, compassion, honesty, courage), and an appeal to both justice and cost-effectiveness. For each case, one must assess the significance of each appeal, and the model finally requires a judgment (for which there is no algorithm) about which course of action has the greatest support and should be undertaken. This model calls, in short, for a pluralistic casuistry. [1]

Determination of Death

Let us first examine those questions that concern whether Ms. T is dead and what this assessment would imply. It is important to remember that this patient fails to meet commonly accepted criteria for brain death. (2) While she has no cortical functioning, her brainstem is still functional. Moreover, Ms. T meets none of the classical criteria of death, since she breathes on her own and her heart functions without any support. It might be maintained, nevertheless, that this patient is dead, and that the current criteria of brain death and the classical criteria of death are incorrect. [3] According to this position, human beings die when they lose their higher cognitive functioning, which is associated with their cortex. On such an assumption, one might suggest that all further support of physiological functioning can be withdrawn, whether or not Ms. T's parents approve.

I am dubious about these suggestions. To begin with, are we prepared to bury or to cremate this body while it still breathes on its own, while its heart still beats on its own, and while is brainstem continues to function? If not, how can we say that she is dead? Secondly, wouldn't it be more appropriate to say that even though her body is still alive, this patient is no longer a person, having lost, when her cortex stopped functioning, the physiological base of what is crucial to personhood? Subsequent to the loss of this essential characteristic of personhood, all that remains is a living body that used to be the body of the preson Ms. T. This interpretation of the loss of personhood might have very substantial moral implications, even if it is conceded that the body is still alive.

Finally, it is not at all obvious that a determination of death implies the moral permissibility of withdrawing all support of physiological functioning against the parents' objections. Several arguments can be offered against this suggestion. There is an appeal to the horrendous consequences experienced by the parents, who would have to live with the belief, correct or incorrect, that their child had been killed by her physicians. The virtue of compassion for the parents could support such an appeal. In addition, if families have a right to determine what is done to the body of a deceased patient, then the parents may have a right to demand further support for the functioning of this body. [4]

While there may be stronger arguments for withdrawing support of physiological functioning if and when this patient is dead, my claim is that seeing this patient as dead would not necessarily resolve the moral issues posed by this case. Given that it will not, given that there is a better way of describing the situation (the entity is a live member of our species but is no longer a person), and given that there are implausible implications to the suggestion that this is simply a dead body, it is necessary to examine other approaches to resolving the moral dilemmas posed by this case.

Consequences of Parental Agreement

We turn then to the second set of questions, which concern what would be morally permissible if the parents agreed to allow their daughter to die. The parents could refuse further care on her behalf, and that refusal should be respected because: (1) The parents have a right to refuse care for her; (2) There no longer exists a "person" whose continued existence is valuable and whose life we are required to help maintain; (3) Allowing her to die would mean a long-term gain to the family, who could resume their own lives again.

Some see a right to refuse care in general as a moral warrant for withdrawal of all forms of basic support, including food and fluids. [5] The withdrawal of food and fluids could be considered the ethically preferable way to end this patient's life, since it will produce a relatively quick death. Others, who are hesitant about the withdrawal of food and fluids, have asserted that the provision of such support is symbolically significant. [6] They presume that it would be better to withdraw other forms of support (including medications to treat recurrent infections), even if this means a longer dying process.

I believe that the withdrawal of food and fluids would be morally illicit in such a case. Let me begin my argument by asking whether or not we are prepared to secure an even quicker death for Ms. T by injecting potassium chloride (KCl) into her veins. I think that most would object to this proposal. The rationale for this resistance would probably invoke the claims that injecting KCl involves "killing" this living member of our species, and that is unacceptable. All members of our species (and perhaps members of other species as well), have a right not to be killed. What does this response imply, however, for the question of what forms of care may be withdrawn if the parents consent to allowing this patient to die? In particular, would withdrawing food and fluids be killig this living member of our species? This crucial issue has been inadequately addressed in the current debate over provision of food and fluids for vegetative patients.

What is the difference between merely letting a patient die and killing that patient? Does it depend upon activity or passivity? Does it depend upon an agent's intentions? I think that neither of these factors is relevant. What is relevant is the cause of the death. A patient is killed when an action or inaction is the cause of the death. When the cause of the death is the underlying disease process, the patient is simply allowed to die. This view, if correct, has two important implications: First, contrary to what many have believed, causality is an operative concept, assisting the process of making decisions, and not a conclusionary concept, one used in stating conclusions made upon other grounds. [7] Second, given that there is little current consensus on a theory of causality, judgments about what counts as killing a patient and what is simply allowing the patient to die, at least for now, will be at best tentative, intuitively-based judgments.

In child abuse cases involving very young normal children, parents who fail to feed or provide fluids to children who cannot get them on their own are guilty of killing those children by starvation and/or dehydration. By analogy, shouldn't it be considered wrong for the treating team to withhold food or fluids from this living patient because it also is killing? These considerations lead me to the conclusion that food and fluids must be provided to this patient, while forms of medical care (such as antibiotics) designed to treat her rercurrent illnesses can be withheld with parental consent, thereby allowing the relevant disease processes to cause her death.

One further issue should be addressed. In general, rights are waivable, and this claim should apply to the right not to be killed as well. I have always been perplexed by the resistance to recognizing this right in law. [8] If Ms. T had, while still conscious, clearly indicated she wanted to be killed rather than to live even for a short while as a vegetative patient, then our conclusion about food and fluids would need modification. But she never waived the right not to be killed. Still, if the parents were to change their minds and agree to allow her to die, couldn't they also waive her right not to be killed? Wouldn't it then be morally justified to not provide this patient with food or fluids? While this issue is difficult, it is at least worth considering whether surrogates can waive the right not to be killed for those for whom they are making decisions. If they can, would such surrogate waivers be acceptable in cases like this, where it would represent no gain (even if no loss) to those for whom they are making decisions? Absent conclusive argument on this point, I would continue to insist that food and fluids be provided to this patient.

Implications of Parental Insistence on Full Care

The previous discussion assumed that the parents could be persuaded to change their minds. There is a good chance, however, that this may not be possible. After all, they have insisted on full care for two and one-half years, and have built up a whole set of defenses against suggestions by the medical staff that they change their decision. What then is legitimate to do in response to their demands? Are caregivers required to accede to their request? If so, does that mean they are required to admit this patient to an intensive care unit if her condition worsens? To resuscitate her if she arrests? Or may forms of care be withdrawn or withheld regardless of their preferences?

These questions have not been comprehensively addressed in the literature. Writers in bioethics have for the most part focuses on exemplary cases, like Quinlan, Bouvia, and Brophy, where the patient or the surrogate refuses further care in conflict with the desires of the physicians. They have overlooked a far larger set of cases, like ours, where the medical staff is quite prepared to stop care while the family insists on full aggressive care. [9]

What are the possible arguments for continued treatment of this patient's infections? FirsT, there would be favorable consequences for the parents. Because the parents want the infections treated, continued medication would give them the satisfaction of knowing their wishes were heeded and that they still had some control over the situation. In addition, if the infections are not treated and Ms. T died, they would lived with the anguish of believing that their daughter's death could have been avoided if only they had convinced the physicians to provide the antibiotics. A second argument might be built on the virtue of compassion. The parents have suffered a great deal. Not treating the infections would add to their grief. A compassionate person would not want to add to that already terrible burden.

Several additional arguments could be advanced in support of treating Ms. T with antibiotics. One would appeal to the parental right of decisionmaking. Another would refer to the value of preserving a human life for many more years. This is not, after all, a patient who has an imminently terminal illness. A third argument could appeal to the benefit to the patient of preserving her life. I think, nevertheless, that none of these arguments are valid.

Patients have a right to refuse care. This is an important right, although it does not always take precedence over all other moral considerations. When the patient is not competent to exercise that right, the surrogate decisionmaker can exercise it for him or her. That right may, like the right not to be killed, even survice the loss of personhood. So if the parents refused further care, that refusal would provide compelling grounds for cessation of treatment. However, this does not imply that patients, or parents who speak for them, have a correlative right to receive the care they demand. To extend to them that right the rights of health care providers and imposes upon them a servitude to their parents. At most, the parents have a right to transfer the care of their daughter to another set of providers, if any can be found, who are willing to provide the care they demand.

Preserving a human life seems something of great value. There are, however, different ways of understanding this claim. One position, which assumes a belief in the sanctity of human life, affirms that preventing the life of any member of our species is always of great value. [10] Another understanding, premised on the belief in respect for persons, maintains that preserving the lives of persons is of great value, but this value depends upon the extent to which they are capable of behaving in the ways that are special to persons, the forms of behavior (choosing on the basis of reasons, having feelings about others and expressing them, appreciating beauty and truth, etc.) that give the lives of persons considerable intrinsic value. This second view will assign no value to preserving the life of this patient because none of these forms of behavior can be performed by this patient. This more satisfactory account of the value of preserving human life does not provide the basis of an argument for continuing to maintain the life of this patient.

What about the consequences for the patient? Can we argue that this patient benefits by being kept alive? It will all depend on our theory of the assessment of consequences. On one theory, which judges consequences by the good mental states they produce (for example, hedonism), continued life will not be a benefit since this patient cannot experience any of these good mental states. According to a more plausible theory, which evaluates consequences by whether they satisfy the previously expressed desires of the persons effected, whether or not the persons are aware of it, continued life could be a benefit for this patient if Ms. T's earlier wishes had been that her body be kept alive even in a vegetative state. There is, however, no evidence of such a request. In short, while there is no reason to see continued care as a loss for the patient, there is also no reason to see it as a benefit for her.

Only a modest set of arguments for continuing to provide antibiotics for this patient exists. There are, by contrast, powerful arguments against doing so. They include the following -- The beneficial consequences for the providers and for society: Allowing this patient to die will end the tremendous sense of frustration experienced by all the providers as they allocate so much time (especially nursing time) to the care of this patient. It will, moreover, save tremendous social expenditures on her care, expenditures that do not seem cost-effective in light of her condition. Justice: Other patients, who can benefit in substantial ways from access to health care, can be provided the time and resources freed if this patient dies. Even without a comprehensive theory of justice in the allocation of health care resources, it seems plausible to say that other patients have a greater entitlement to those resources. An appeal to the virtue of integrity: Those who are currently providing care for this patient have as one of their fundamental professional values the use of their skills to cure diseases and/or to alleviate suffering from those diseases. Caring for this patient calls upon them to use their skills without accomplishing either of these goals. They are being asked to act contrary to the values that define their profession. An appeal to the consequences for the family: As things stand now, the family is unable to pursue any other goals or projects. Their lives are devoted to keeping the patient alive until a miracle occurs or a cure is found. Neither will happen. If this patient lives for many years, none of the family's goals will be achieved. If the patient dies now, the family eventually will resume their normal life, and begin to achieve other goals. Although they don't realize it, withholding care from this patient may be best in the long run for the family, even if we judge those consequences by reference to their values. This is just the sort of case in which the view that each person knows what will lead to the best results for him or herself must be rejected, even if we continue to believe, as we should, that we must assess results in accordance with the values of those affected, and not in accordance with our values. The clear implication of these several arguments is that the treating team should refuse to continue to treat this patient's infection.

Continuing Questions

This analysis has arrived at the following conclusions: This patient is alive but not a person. If the parents agree, it would be permissible not to treat her infections, even with the intention that her death should result, but it would be wrong to withhold fluids or food from her. And even if the parents do not agree, the providers are not obliged to treat the infections. The parents would then be entitled to seek other providers, but it is to be hoped that they would also refuse to provide further care.

There remain many questions. How long are the parents entitled to seek other providers while treatment is continued? What forms of care should be provided in the meantime? Is society required to pay for further care if others agree to provide it? These questions need much further discussion. We need protocols for the conditions under which, and the processes by which, providers can discontinue care that they judge to be inappropriate even if the patient and/or the surrogate insists upon further care. The case of Ms. T reminds us how important it is to develop such protocols.


[1] Baruch A. Brody, Life and Death Decision Making (New York: Oxford University Press, 1988).

[2] For example, the Uniform Determination of Death Act 12 U.L.A. 271 (Supp. 1985) says that "An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions or (2) irreversible cessation of all functions of the entire brain, including the brainstem, is dead." Ms. T satisfies neither (1) nor (2).

[3] See, for example, Robert M. Veatch, "The Definition of Death: Ethical, Philosophical, and Policy Confusion," Annals of the New York Academy of Science 315 (1978), 307; Stuart J. Youngner and Edward T. Bartlett, "Human Death and High Technology: The Failure of Whole-Brain Formulations," Annals of Internal Medicine 99 (1983), 252-58; and most recently David Smith, "Legal Recognition of Neocortial Death," Cornell Law Review 71 (1986), 850-88.

[4] There may also be a family right to refuse to accept a brain-death conception of death if that goes against their religious, philosophical, or moral beliefs.

[5] See, for example, the statement from March 15, 1986 of the American Medical Association's Council on Ethical and Judicial Affairs, which says in part: "Even if death is not imminent but a patient's coma is beyond doubt is irreversible and there are adequate safeguards to confirm the accuracy of the diagnosis, and with the concurrence of those who have responsiblity for the care of the patient, it is not unethical to discontinue all means of life prolonging medical treatment. Life prolonging treatment includes medication and artificially supplied respiration, nutrition, or hydration."

[6] See, for example, Daniel Callahan, "On Feeding the Dying," Hastings Center Report 13:5 (October 1983), 22.

[17] This was, for example, the view of many of the legal realists and the judges who were influenced by them, as in Justice Andrews's dissenting opinion in Palsgraf v. Long Island Railroad Company 162 N.E. 99 (1928).

[8] H. Tristram Engelhardt and Michelle Malloy, "Suicide and Assisting Suicide: A Critique of Legal Sanctions," Southwestern Law Journal 36 (1982), 1003-37.

[9] That this is the larger set of cases is suggested by data presented in Andrew Evans and Baruch A. Brody, "The DNR Order in Teaching Hospitals," Journal of the American Medical Associations 253:15 (April 19, 1985), 2236-39. A preliminary analysis from another study my colleagues and I are conducting on decisions about levels of care for severely demented patients suggests further support for that view.

[10] See, for example, the view expressed in Federation of Jewish Philanthropies of New York, The Compendium on Medical Ethics, 6th ed. (New York: Federation of Jewish Philanthropies of New York, 1984).

Baruch A. Brody is director of the Center for Ethics, Medicine and Public Issues at Baylor College of Medicine, Houston, TX.
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Author:Brody, Baruch A.
Publication:The Hastings Center Report
Date:Feb 1, 1988
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