A consensus has gradually emerged in the United States concerning the moral and legal rightness of forgoing certain medical treatments.
Over the past 30 years or so, a consensus has gradually emerged in the United States concerning the moral and legal rightness of forgoing certain medical treatments under some circumstances. This consensus, which is currently under attack by those who would legalize euthanasia and/or physician-assisted suicide, has been based on three pillars of support. The first of these is the recognition that not all treatments that prolong biological life are beneficial to the patient. The second is the agreement that there is a moral difference between killing (active euthanasia) and allowing to die. In the US legal system, these two ethical bases have been combined with a third, legal basis: the legal concept of the right to autonomy, privacy, and liberty. Together, these three pillars are the foundation on which the present consensus concerning the moral and legal rightness of forgoing treatment has been built.
The first of these pillars is a detailed and argued system of medical ethics that was well established within the Roman Catholic tradition prior to the arrival of the so-called American bioethics in the 1960s and 1970s. The only other tradition–religious or secular–to have developed such a system was Judaism, but the Jewish medical ethics system has, for various reasons, had a lesser impact on US secular medical ethics and US law than has the Roman Catholic tradition. Indeed, it is probable that the growing US consensus would have been impossible had these concepts not already been developed in Roman Catholic moral theology.
Ordinary and Extraordinary Treatment
The ethical distinction between mandatory and optional treatment has been provided by the Roman Catholic tradition in its centuries-old distinction between ordinary and extraordinary means of preserving life. This is a moral distinction, not a medical one, and it relies on theological and philosophical understandings of the meaning of human life for which the practical implications, if not the theological bases, have largely been accepted in the US consensus. It is mostly a question of human benefit versus human burden. Not every medical treatment that prolongs life is morally required.
The distinction proposes a kind of reasonable middle ground between two extreme positions that are sometimes advocated. The first of these positions permits no cessation of efforts to prolong life. This position claims that life itself is the greatest possible value, to be sustained at all costs. The other position permits cessation of treatment, and even active killing, based totally on the subjective choice of an individual.
The Roman Catholic tradition has rejected both of these extremes. It has recognized both the sanctity of life and the ethical import of at least some aspects of the quality-of-life position: life need not be prolonged under all circumstances, that is, at some point, a lack of the ability to carry out humanly meaningful purposes–which some would term a lack of quality of life–means that life can be let go.
The distinction between ordinary and extraordinary means of treatment goes back several centuries. According to this tradition, a person is not obliged to preserve his or her life by using medical measures that are morally extraordinary. The distinction between ordinary and extraordinary is a useful one, and I am hesitant to abandon it even in the face of some criticism. Critics do have a point, however, when they argue that the words used, ordinary and extra-ordinary, are open to misinterpretation if the distinction is understood as a medical one. It is, rather, a moral distinction, and there are no simple technical or statistical criteria for determining the difference. Means that are usually thought of as medically ordinary may be morally extraordinary. Thus, what would be an ordinary or reasonable means, when used in caring for a person whose chance of renewed health is great, would become extraordinary in the care of a patient who has no chance (or, perhaps, little chance) for recovery. There is no moral obligation to preserve life at all costs. Many factors must be weighed in this decision: the intervention’s chance of success; the degree of invasiveness, pain, and patient fear that it entails; its financial cost; its social cost (this analysis is fraught with risk, of course, and calls for extreme caution); the needs of others; and the patient’s readiness for death.
The distinction between ordinary and extraordinary means, as developed and applied within the Roman Catholic tradition, is thus very wide and very flexible. Ordinary means, which are morally obligatory, are those through which the patient can reasonably be expected to receive a significant benefit without having to accept a disproportionate burden. Extraordinary means, which are optional, are those that promise little significant benefit or those that impose burdens disproportionate to the likely benefit.
This, then, is the first pillar on which the current US consensus is based: people do not have a moral obligation to preserve their lives if the means needed to do so offer little benefit or impose a significant burden. The moral obligation of which this principle speaks is, of course, that of the patient, but this concept clearly has implications for hospital practice. If a patient is not obliged to use every possible means of preserving life, then hospitals and health care practitioners may not impose them on patients. The fact that such a distinction had been developed within Roman Catholic medical ethics was, I believe, important in support of the consensus now emerging.
Killing and Allowing to Die
The second pillar on which this consensus is based is the distinction between killing and allowing to die, which, in the medical ethics context, has been provided by the Roman Catholic tradition through the principle of double effect. According to this distinction, the direct killing of an innocent person is never morally right, but allowing a person to die is sometimes morally right. Although some would now argue that direct killing (active euthanasia or assisted suicide) may be morally right in some cases, the acceptance of this basic distinction has helped form both US medical practice and US law.
The word euthanasia generally means doing something that brings about the beneficial death of a person who is hopelessly ill and/or who is suffering the pain or other burdens of an illness. There are five different kinds of actions to be considered. First, one may decide not to use certain medical means that would prolong life. For example, one may decide not to use a ventilator for a terminally ill patient or not to resuscitate a patient who suffers from some severe illness. This withholding of treatment is not the killing of a person; it is allowing a person to die. It is not always morally right, but it is sometimes (indeed, it is often) morally right. If the method in question is morally extraordinary, the decision not to use it is generally accepted as moral.
Second, one may decide to stop using a means for which use has already begun (for example, withdraw a treatment or turn off a ventilator). Roman Catholic moral tradition has generally seen this action to be the equivalent of the first. Morally, it is the nonuse of extraordinary means, and it is normal procedure in many hospitals. In the recent past, this second kind of action was sometimes considered to be legally more dangerous (more open to legal repercussions or, at least, to malpractice litigation) because it is the actual doing of something, rather than the simple failure to do it. Recent court decisions, however–especially the US Supreme Court decisions in Cruzan v Director (June 1990)1 and on physician-assisted suicide (June 1997)2,3–have made it clear that withdrawing is the legal equivalent of withholding. Thus, it can now be stated that if it is morally right and legal to withhold a treatment under certain circumstances, then it is morally right and legal to withdraw that treatment under the same circumstances. These circumstances may change, of course, as they do when a patient or a surrogate states that he or she would have withheld a treatment, but is unwilling to withdraw it. There is no ethical or legal difference, however.
This is important for a number of reasons. The most obvious is that one would otherwise be forced to continue useless and unwanted treatment (and use scarce resources in order to do so). There is also a danger of insufficient treatment. If patients and their families were to fear that certain interventions, such as mechanical ventilation, could never be stopped, they might be overly hesitant to authorize them in the first place. People might insist, in their advance directives, that they never want to be intubated, regardless of the possible outcome. Emergency department physicians might hesitate to begin care, fearing that later diagnostic tests would show treatment to be unwarranted. The moral and legal equivalence of withholding and withdrawing is thus essential to good ethics, good law, and good medicine.
Although moralists of earlier times often spoke of negative euthanasia or (more technically within Roman Catholic moral theology) indirect euthanasia to refer to either withholding or withdrawal, it seems better not to use the word euthanasia for either. It is less confusing if this word is reserved for the actual killing of patients. Withholding or withdrawing medical treatments is not always morally right, of course. For example, to withhold an emergency appendectomy because a patient cannot pay for it would be morally appalling. Even though it would be allowing the patient to die of appendicitis, it would be wrong.
Third, one may take positive means aimed at relieving the patient’s suffering, but not directly intended to cause death. This distinction is sometimes difficult to make, of course, as increasing doses of a sedative may shorten life. It is certainly a moral act to relieve pain, however, and this sort of medication cannot be considered ethically wrong as long as consideration is given to the patient’s wishes, ability to stand pain, desire for consciousness, and readiness for death. The Roman Catholic tradition would tend to call this third kind of action, like the first two, indirect killing. The act itself is not a killing, but a giving of medication that relieves pain even though death may indirectly result. This act, like the first two, may well be morally right, according to the Roman Catholic moral tradition. In the US legal and ethical consensus, the same judgment is made. It is always medically possible, and, assuming the proper decision-maker agrees, it is always morally right (and always legal) to eliminate physical pain in the imminently dying patient. Reasons sometimes given for failure to do so include the fear of addiction, the fear of hastening death, and the recognition that, in some cases, the agent given to relieve pain will also induce coma. None of these are reasons to reject pain relief in the dying patient, however, if the patient or surrogate asks for it.
It is here that some further specification is needed in the case of terminal weaning with concurrent sedation. The physician knows the outcome of turning off the ventilator. With the agreement of the patient’s surrogate, since further ventilation cannot lead to meaningful recovery, the decision is made to turn down the machine. The physician knows that the patient will die when ventilation is discontinued; at least, he or she suspects that this will almost certainly be the case. In order to keep the patient from suffering and, sometimes, in order to calm the fears of the family, the physician will order sedation. The sedation will contribute to the suppression of the patient’s attempts to breathe. How can this be distinguished from active euthanasia?
The Roman Catholic tradition has made this distinction through the famous principle of double effect. Two simple, practical criteria present themselves, and these have been accepted in the general US ethical consensus and in US law. First, the physician’s intention must be to sedate and not to kill. There is a fine line here, but I am convinced that it can be maintained. Physicians should avoid saying things like, “I want to be sure to give him enough so he never suffers again,” or “enough so he is sure not to breathe at all.” Statements like this indicate that the physician’s intention may be to kill. Although it is most unlikely ever to come to a court case, such statements could be offered as evidence that the physician killed the patient. It is quite different to be aware that the sedation may contribute to the suppression of respiration and thus hasten the precise moment of the patient’s death. The physician would like to be able to help the patient recover. The disease makes this impossible; mechanical ventilation is preventing the patient’s death. The physician will allow the patient to die, and intends to make sure that the process is pain free. The physician and the family may see this outcome as a blessing, given the circumstances, but neither wants the death for its own sake. The physician does not want to kill the patient in order to stop the suffering, but, rather, wants to stop the suffering as the patient is allowed to die.
The physician must make sure that the amount and administration of the sedative are such that the standard of medical care is not abrogated. The physician may, and should, use enough medication to eliminate pain, but not more. No one is going to quibble over minor variations in dosage, but a huge bolus of morphine–clearly, more than is necessary for the patient’s comfort–would indicate that the physician wanted to kill the patient. Similarly, the use of curariform agents in order to reduce anxiety for family members is a special problem, as the agents are clearly used for the purpose of stopping breathing. Family members should be informed of what to expect, and told that enough morphine will be used to eliminate any possibility that the dying person will be conscious of anxiety in a struggle to breathe. The patient will not experience suffocation, but there may be some physical signs of attempts to breathe. Indeed, it is possible that the patient will be able to breathe on his or her own. The removal of the ventilator is not designed to kill the patient, but to remove what appears to be an impediment to a natural death. Morphine will make the transition from the machine peaceful, but no drugs may be administered for the purpose of killing the patient or to prevent breathing. Sedating a dying patient is not euthanasia, and is not illegal (even if it should happen to hasten the precise moment of a patient’s death).
Fourth, one may act in conjunction with the patient by assisting in active euthanasia. The patient wishes to kill himself or herself, and makes this known to the health care practitioner, asking the practitioner to provide the necessary means. The patient actually consumes the drug or initiates the suicide. This is assisted suicide in the strict sense. It is a direct self-killing. In the Roman Catholic tradition, and until recently in the US moral consensus, it has been judged as always morally wrong. In addition, assisting in suicide is illegal in most, but not all, US jurisdictions. The most obvious exception is Oregon.
Fifth, the health care practitioner may take action directly intended to bring about death. This, like the fourth action, is referred to as positive euthanasia, active euthanasia, or (within the Roman Catholic tradition) direct euthanasia. It is a direct killing, according to the principle of double effect, as that principle was developed by moralists up to the middle of this century, and it is illegal in all US jurisdictions.
In my judgment, and in the judgment of many (probably most) ethicists, there is an important moral difference between the fourth and fifth kinds of action and the first three. There is some question, however, as to whether or not this distinction is sufficient, by itself, to make all acts of positive or active euthanasia morally wrong. Many ethicists think that the distinction can carry this weight. According to this position, the first three kinds of actions (withholding treatment, withdrawing treatment, and relieving pain) are considered morally right in those cases where it is reasonable to do so. Actual killing, however, whether through patient suicide or through the killing action of the physician or other practitioner, is judged to be always morally wrong. The Roman Catholic tradition has made this difference definitive and has argued consistently against such direct killing. A fair number of today’s Roman Catholic moralists would argue, though, that this difference between direct and indirect, as specified precisely by the principle of double effect, is not important enough to warrant the conclusion that all such direct actions are intrinsically immoral. Some now argue that once the dying process has irreversibly begun, the difference loses some of its moral weight, so that distinctions between the first three actions and the last two are no longer, of themselves, morally definitive. Even this rejection of the absoluteness of the distinction, however, need not lead to a desire for the legalization of active euthanasia.
There are many valid reasons to support the claim that euthanasia and physician-assisted suicide should remain illegal. Any increase in the number of exceptions to the general principle against killing makes other exceptions easier. Human life is of great value. When a society decides that certain kinds of killing are moral, there is an ever-increasing chance that the society will extend such permission even further. The United States has decided that killing is legally permitted in properly declared wars, in court-ordered capital punishment, in abortion, in self-defense, and (under some circumstances) in defense of private property attacked criminally. Active euthanasia is not the same kind of killing as these, but to permit it legally would add one further exception to the law forbidding killing. In this context, it seems unlikely, and probably impossible, to restrict such legalization to physician-assisted suicide. If an autonomous patient who can hold drugs and swallow them is permitted a lethal prescription, why should help be withheld from an autonomous patient who cannot swallow?
It must be emphasized that the distinction between killing and allowing to die has been one of the pillars on which the present US consensus that legally permits the forgoing of certain treatments is based. The absolute legal prohibition against active euthanasia thus serves as a protective barrier against going too far and serves as a valid argument against those who think that forgoing treatment is, itself, euthanasia. If that barrier is removed, there may be a backlash against the present consensus that forgoing treatment is, in many cases, legally and morally right. The legalization of active euthanasia concerns the integrity of the medical profession. Physicians are not now allowed to kill their patients. Permission to do so might lead to mistrust on the part of some patients.
It was on the basis of such concerns that the US Supreme Court decisions2,3 in June of 1997 supported the constitutionality of state laws forbidding assisting at suicide and, thus, of the laws in all states forbidding active euthanasia.
Privacy, Autonomy, and Liberty
The third pillar supporting the US consensus is that of the legal concept of privacy, autonomy, and liberty. This has been interpreted to mean that patients who are capable of making decisions of this type may refuse treatment, even against the advice of their physicians. The patient has the right of autonomy (to choose) and of privacy (to be left alone). The Cruzan decision1 of the US Supreme Court, relying on common-law liberties, established this right of competent patients to refuse treatment as the law of the land. Similarly, courts have, in most cases, decided that patients not capable of making decisions may also refuse through surrogate decision-makers. The precise relationship between this third pillar and the other two is not yet theoretically clear, although, in most jurisdictions, the practical judgments rendered have led to consistent outcomes.
The legal implications that follow from the distinction between reasonable and unreasonable (or ordinary and extraordinary) treatment are unclear. The issues are complex, but remember that the moral obligation to use reasonable means to preserve life falls primarily on the patient. What if a patient deemed capable of making such decisions chooses to forgo a means of treatment that, in any reasonable judgment, is ordinary, beneficial, inexpensive, and of little burden? If a patient came to a hospital with a pain that was diagnosed as appendicitis, but the patient refused permission for surgery, what moral obligation does this impose on the health care institution and practitioner? Should this have any bearing on the court’s decisions or on the legality of forgoing treatment?
In practical terms, courts have tended to resolve such questions by upholding the right of patients to refuse for themselves, with little or no insistence on the distinction between reasonable and unreasonable treatment. Of course, the very fact that a person refuses a treatment that seems reasonable might be an indication that the person lacks capacity to decide. It might not be, though, in the case of a person who refuses treatment for religious reasons. The treatment is reasonable or ordinary to most, but most unreasonable, or even repugnant, to the patient. The right of autonomy and privacy has prevailed in those cases in which the patient is capable of deciding. There might be an exception for a pregnant woman, but this is very controversial, and courts often will allow the woman and fetus to die if the woman refuses treatment. Courts did, for a while, sometimes require reasonable treatment to save the lives of parents whose children would otherwise be left orphans, but courts have recently tended to stop doing this. The distinction between kinds of treatment has generally not been a major factor.
In those cases in which the patient is unable to choose, and the decision is made by a surrogate, the courts have required that the decision be in the best interests of the patient, that is, that reasonable treatment be given. If the patient has left an explicit order, that order will ordinarily be seen as the patient’s wishes, and the surrogate should follow it. If the order asks that eminently reasonable treatment be forgone, however, hospitals are properly reluctant to comply until the legality of the directive is established. In cases in which the patient has made his or her wishes known, the standard to be followed is known as the substituted judgment standard. The surrogate makes the judgment that the patient would have made, since the patient’s wishes are known. If the patient’s wishes are not known, the surrogate should follow the best interests standard.
David F. Kelly is professor of theology and health care ethics at Duquesne University, director of the Duquesne University Health Care Ethics Center, and hospital ethicist at the Saint Francis Medical Center in Pittsburgh.
1. Cruzan v Director. Vol 110, SCt 2841 (1990).
2. Washington v Glucksberg. Vol 17, SCt 2258 (1997).
3. Vacco v Quill. Vol 117, SCt 2293 (1997).