Withholding or withdrawing a life-sustaining treatment tends to be very challenging for health care providers, patients, and their family members alike. When a patient’s life seems to be nearing its end, it is generally felt that the morally best approach is to try a new intervention, continue all treatments, attempt an experimental course of action, in short, do something. In contrast to this common practice, the authors argue that in most instances, the morally safer route is actually to forgo life-sustaining treatments, particularly when their likelihood to effectuate a truly beneficial outcome has become small relative to the odds of harming the patient. The ethical analysis proceeds in three stages. First, the difference between neglectful omission and passive acquiescence is explained. Next, the two necessary conditions for any medical treatment, i.e., that it is medically indicated and that consent is obtained, are applied to life-sustaining interventions. Finally, the difference between withholding and withdrawing a life-sustaining treatment is discussed. In the second part of the paper the authors show how these theoretical-ethical considerations can guide clinical-ethical decision making. A case vignette is presented about a patient who cannot be weaned off the ventilator post-surgery. The ethical analysis of this case proceeds through three stages. First, it is shown that and why withdrawal of the ventilator in this case does not equate assistance in suicide or euthanasia. Next, the question is raised whether continued ventilation can be justified medically, or has become futile. Finally, the need for the health care team to obtain consent for the continuation of the ventilation is discussed.
Keywords: Clinical ethics, Ethical theory, Euthanasia, Forgoing treatment, Life-sustaining treatment, Physician assistance in suicide, Ventilation, Withdrawing treatment, Withholding treatment
Theoretical considerations - Part l
One of the ethically most vexing decisions for clinical care providers is to withdraw a life-sustaining treatment. Many of the hallmark cases in American bioethics involve exactly that type of decision. In the case of Ms. Karen Quinlan , which is now half a century old, the treatment forgone was ventilation. Mr. Cinque refused continued dialysis . Mr. Dax Cowart refused further treatment of his life-threatening burns . The husband of Ms. Terry Schiavo wanted the artificial nutrition and hydration stopped after his wife had been in a persistent vegetative state (PVS) for more than two years . All of these cases ended up in court. And when, more recently, a nurse at a California nursing home refused to provide cardio-pulmonary resuscitation (CPR) in accordance with the facility’s Do-Not-Resuscitate (DNR) policy , many a commentator was appalled.
Why the upheaval about the events in the nursing home? After all, the success rates of CPR, particularly for a frail 87 year old nursing home resident, are abominable [6,7] and the side-effects frequent and significant . Even when it became clear from testimony of the family that the patient had been aware of the facility’s DNR policy and did not want CPR, some commentators continued to insist that the facility’s staff should have attempted CPR anyway, as was done by the Emergency Medical Services personnel upon their arrival at the scene – to no avail.
This insistence on CPR reflects a widespread and deep seated angst about withholding or withdrawing any type of life-sustaining intervention. Although most professional care givers are aware of the potential harm that can come to their patients when certain life-sustaining treatments are attempted or continued, many assume that the morally safer route is to always provide the treatment rather than withhold or withdraw it . But is it?
In this article we will argue that the aforementioned assumption is mistaken. We will show that in most instances, the morally safer route is to forgo life-sustaining treatments, particularly when their likelihood to effectuate a truly beneficial outcome has become small relative to the odds of actually harming the patient. We will argue that the burden of proof and justification does not rest on the health professional who wants to withhold or withdraw a life-sustaining treatment, but rather on the one who wants to initiate or continue such treatment. From an ethical perspective, the default is “do not treat.”
To act or not to act
Medicine’s preoccupation with non-treatment decisions seems unusual when compared with most other scenarios in life in which we face some kind of moral quandary. The designated driver does not run a moral risk if he decides not to accept the drink offered to him by a dear friend, but only when he does accept. If he caves in and accepts the drink, this moral risk materializes when he next gets into his car and drives himself and the members in his party back home. It is by doing certain things, by bringing about some kind of change in the natural course of events, that we become morally responsible.
This is why a thoracic surgeon about to embark on a lung transplant must carefully assess whether that modification of the patient’s body is beneficial to the patient before starting the intervention; this is why she must first obtain the patient’s consent to the surgery. In contrast, if the surgeon were to decide that a transplant is too dangerous for this frail patient, and hence rules out that treatment option, she does not need the patient’s consent not to transplant.
Now there are situations in which we incur moral responsibility even if we did not do anything. Precisely because we have the freedom to act or not to act, to intervene or stand by, to assist or ignore, we can at times be held responsible for the things we did not do. Or to use the jargon of ethicists: We are always responsible for our commissions, but occasionally we are also responsible for our omissions. Other terms frequently used to label such morally reprehensible omissions are “failure” or “neglect.”
The teacher who fails to help a struggling pupil incurs a moral risk. The mechanic who neglects to tighten the bolts incurs a moral risk. And likewise, the nurse practitioner who fails to properly sterilize the injection site, or the respiratory technologist who neglects to inform the patient of common side-effects. What sets all these examples apart from other cases of passivity is that the protagonists did not do what they were morally obligated to do. A respiratory therapist is not obligated to disclose every possible side-effect; but she is obligated to inform the patient about serious or common side-effects. A nurse practitioner is not morally obligated to verify that the manufacturer properly sterilizes each needle prior to packaging; but he is obligated to properly sterilize the injection site itself.
We can conclude, then, that every single time health care professionals decide to do something (i.e., commit an act), they are morally responsible for that decision and its consequences. But such moral responsibility does not always arise if a care giver decides not to act but remains passive instead. Such an omission is ethically blameworthy only if the care giver was morally obligated to act but failed to do so.
How does this translate to the domain of life-sustaining medical interventions? Any time pulmonologist Dr. P. hooks up a patient to a ventilator, she thereby incurs moral responsibility for that decision and its consequences. It does not matter whether the ventilation is a standard, even routine intervention that every pulmonologist would have initiated under the circumstances. If, for example, the patient is severely harmed as a result of the ventilation, Dr. P. should feel bad about that outcome. If, for example, it becomes clear that the patient had refused the ventilation but Dr. P. had forced the treatment onto the patient, she could be liable to charges of battery. However, the situation is more complex if Dr. P decides not to ventilate the patient. Now the question arises whether Dr. P. was morally obligated to initiate the ventilation.
The two necessary conditions for medical treatment
Two necessary conditions must be met before a health care professional is morally permitted to provide a treatment. Firstly, the treatment must be medically indicated. That is, the provider must conclude that given this patient’s diagnosis and prognosis, treatment X has a reasonable chance of benefitting the patient and is unlikely to cause disproportionate harm.
Secondly, the patient (or the patient’s proxy decision maker in case the patient herself is incompetent) must be informed about her diagnosis, prognosis, and the nature of treatment X, and must then consent to it. In rare circumstances, such as when an incompetent patient with a life-threatening condition is brought to the Emergency Room, the patient’s consent may be presumed. But even then it is this “presumed consent” that fulfills the second necessary condition for initiating a medical intervention.
If either of these two necessary conditions is not met, a health care provider may not provide treatment. Thus, if Dr. P. decides that ventilation of patient A will not likely relieve the patient’s symptoms or surely cause more harm than good, forgoing ventilation is not a form of neglect. Indeed, knowingly providing a treatment that is likely to be futile violates the bioethical principle of non-maleficence and may legally constitute battery if the foreseen harm actually occurs.
Suppose Dr. P. concludes instead that ventilation is medically indicated for patient A. She next informs her competent patient about his condition and his options, but the patient refuses the option of ventilation. Once again, a necessary condition for treatment has not been fulfilled. So the physician ethically may forgo the ventilation. Moreover, if she forces the ventilation onto the patient anyway, she may be liable to legal charges of battery.
As straightforward as the foregoing analysis may seem, in real life it turns out to be very difficult to withhold or withdraw a life-sustaining treatment. Many health care providers believe that any omission of a life-sustaining treatment is tantamount to euthanasia or at least assistance in the patient’s suicide. And health professionals are not the only ones to reason in this fashion. In one of the trials involving the American physician Jack Kevorkian (who assisted many patients in their suicides), the judge contended that “The distinction between assisted suicide and the withdrawal of life-support is a distinction without merit.” .
The late American bioethicist James Rachels likewise tried to defend the morality of euthanasia by equating it to the withdrawal of life-sustaining treatment. To do so, he used a thought experiment about an uncle who is supposed to keep an eye on his little nephew while the latter is taking a bath. If the uncle pushes the kid under water and drowns him, surely he is guilty of murder, Rachels contends. Now suppose the kid falls while in the tub, hits his head, and unconsciously slips under water. If the uncle passively stands by without grabbing the kid, letting him drown instead, the uncle is equally responsible for the child’s death even though he did not actually do anything. Apparently, so Rachels concludes, the difference between being active and remaining passive has no ethical significance .
But the US Supreme rejected that conclusion, insisting instead that “the distinction between assisting suicide and withdrawing life-sustaining treatment.... is both important and logical; it is certainly rational” . To understand why the distinction is valid indeed, we need to remember our conclusion reached earlier: Not all instances of a physician’s remaining passive amount to neglect. The physician must have failed to do what he was morally obligated to do. So was he morally obligated to provide the life-sustaining treatment?
If the health care team after a careful assessment of the patient’s condition and the patient’s own goals and interests is convinced that a particular life-sustaining treatment will do more harm than good, it should not attempt such treatment, even if the patient will surely die without. The team, then, is not like the second uncle in Rachels’s thought experiment who stood by idly when he could have simply grabbed the kid out of the water. This health care team cannot grab the patient out of death’s clutches. It is more akin to the sea captain who sees one of his sailors being swept overboard by a raging storm; jumping after him will be pointless.
Similarly, if the patient refusing the life-sustaining treatment is competent, one of the two necessary conditions for treatment discussed above is not fulfilled and hence the patient’s health care providers are not ethically permitted to start the treatment. It may be the case that the patient is refusing the treatment in an attempt to end his life. But even if the refusal is suicidal, that does not mean the health care team is assisting the patient in his suicide. The team simply has no ethical mandate to start the life-sustaining treatment when a competent patient refuses the treatment. For sure, the team members should inform the patient, counsel him, negotiate, and use any other respectful means to get the patient to at least try a life-sustaining treatment that is likely to be effective and unlikely to cause severe side-effects. But if a competent patient persists in his refusal, the health care team has no longer a choice in the matter, must abstain from the refused treatment, and hence cannot be responsible either for the patient’s subsequent death.
So we can conclude that in order for health care providers to be liable to charges of passive euthanasia, they must be neglectful; they must have failed to provide a treatment that is both medically indicated and consented to by the patient.
But there is more. For the team’s abstention of treatment to qualify as passive euthanasia, it must first qualify as “euthanasia.” That is to say, the decision to abstain from further treatment must be aimed at securing the patient’s death. Consider the case of Karen Quinlan again. After she had been in a PVS for more than a year and after much legal wrestling, it was finally decreed that the ventilator should be removed. But upon weaning Ms. Quinlan from the ventilator, she continued to breathe on her own (and actually lived for nine more years until dying from a pneumonia). Now if the health care providers, surprised by her survival, had exclaimed “That was not supposed to happen! We had planned for her to die,” this might have cast doubt on their intentions. But in the absence of evidence to the contrary, it is much more reasonable to assume that health care professionals who conclude that a treatment is doing more harm than good and hence needs to be forgone, do so out of the humble acknowledgment of and acquiescence in their own limits and in the limits of modern medicine more in general.
The difference between withholding and withdrawing
So far, we have not distinguished between withholding and withdrawing a treatment. But as a matter of fact, it appears to be much more difficult for health professionals and family members to agree to the withdrawal of a life-sustaining intervention. Once a patient has been hooked up to life-sustaining technologies, those tend to acquire the status of a patient’s own organs which it would be wrong to cut out. Consider artificial nutrition and hydration. We seem to forget that it was us who surgically made an artificial opening in the patient’s abdominal wall and inserted a plastic tube through which factory-produced nutrients are being pushed by a man-made machine running on electricity supplied by the nearby power plant. There is nothing natural about this manner of consuming a meal. And yet the artificial feeding tube has somehow acquired the status of an umbilical cord that may not be cut.
From an ethical perspective the same two necessary conditions outlined earlier for medical treatments apply equally to the initiation of treatments and the continuation thereof. A health care provider needs to have both a medical indication and a consent to start treatment; and she likewise can only continue the provision of treatment when and as long as that treatment is still medically indicated and the patient is continuing to consent to its provision.
If, for example, the expected benefits of a treatment do not materialize and the harmful side-effects are more serious than expected, that treatment must be discontinued. It would be immoral to tell the patient “we are sorry that the treatment turned out to be harmful, but since we started it, it now must be continued.” Likewise, if a competent patient withdraws his earlier consent for treatment, it would be immoral to tell the patient: “Sorry, but you should not have consented to us starting the treatment; your earlier consent now allows us to continue forcing it upon you.”
In fact, the withholding of treatment is morally more risky that the withdrawing thereof. At least if a treatment was tried for a while and then shown not to benefit the patient, there is clear evidence that it is not medically indicated anymore. But decisions to withhold treatments prior to a trial period are always based on predictions only.
Finally, if a treatment of uncertain benefit is tried for a while, but the hoped-for benefits don’t materialize, its withdrawal is not a new decision that must be ethically justified. Rather, it is the termination of a clinical experiment that failed.
Clinical decision making - Part II
The case of Mr. French
Mr. Peter French is a 62 year old man who had cardiac surgery two weeks before but is still in the Intensive Care Unit because the medical team has been unable to wean him off mechanical ventilation. The patient has a past history of both fibrotic and obstructive lung disease related to working in the stone cutting industry, as well as a 45 year heavy smoking history. Prior to surgery, the patient had significant dyspnea with exertion and was unable to walk up more than one flight of stairs without having to stop and rest. His exercise was also limited by chest pain, secondary to coronary artery disease. The preoperative medications included both inhaled bronchodilators and cardiac vasodilators. But preoperative pulmonary function studies showed a severe combined restricted and obstructive pulmonary dysfunction with minimal improvement after bronchodilators.
Extubation has been attempted twice with rapid deterioration in arterial blood gases, necessitating reintubation of the patient within six hours. The medical team is not in agreement on how to proceed. On the one hand, the team has not been able so far to identify any potentially reversible causes of the patient’s ventilator dependency. On the other hand, the patient appears stable as long as he is ventilated. To add to the complexity, Mr. French himself, though unable to speak, has made it known that he wants the ventilator removed. His daughter, in contrast, wants everything possible done and argues that her father is depressed and suicidal, and the removal of the ventilator would be tantamount to assisting in that suicide. His son, finally, maintains that a willingness to remove the ventilator should imply willingness on the part of the health care team to end the patient’s life rather than await a slow death from hypoxia.
As we pointed out earlier, in everyday life people are more likely to be held responsible for what they did, than for what they did not do. If what they did was good, we praise them; if it was bad, we blame them. But we don’t typically praise them for not doing bad things, nor blame them for the many good things they could have done but did not. After all, the number of good things that a person can do in theory, far exceeds the average person’s capacity for doing good. So it is only in specific situations when a person has an established moral obligation to do some good thing that we will blame him for his omission to act accordingly. Hence, in everyday life doing something is morally more risky than remaining passive.
In contrast, in the world of health care, it is the forgoing of treatment that tends to generate more moral trepidation on the part of the care givers, desperation for the patient, dissension among family members, and severe anxiety for the institution’s risk manager. There seems to be moral safety in at least doing something. And at times, even legislatures and courts support this type of medical activism.
But from a strictly ethical perspective it is the (continued) provision of a treatment that must be justified, not withholding or withdrawing a medical intervention. For example, only if a respiratory therapist wishes to initiate an intervention should he be ready to justify that action, proving that the intervention is medically indicated and that consent for the treatment has been obtained from the patient. A therapist does not need to justify why he is not offering to a patient a treatment option that is deemed futile (though he may have to explain to the patient what renders this particular intervention futile). From an ethical perspective, the default position is “do not treat.”
As straightforward as these theoretical considerations are, they do not necessarily relieve the angst at the bedside. The clinical decision making process is often rendered more complicated still when and because it is not clear which medical treatments can benefit the patient and which have become futile. To make matters worse, in many such instances the patient is no longer competent to make decisions, has not left a clear advance directive, and family members disagree about which treatments to consent to and which to refuse on behalf of the patient. These different factors then become all mixed-up, yielding an emotionally volatile situation that defies a calm and mutually agreeable resolution.
The scenario sketched above exemplifies such a volatile situation. Although the case description is too sparse to enable a comprehensive ethical analysis, it does lend itself to illustrate how a systematic application of ethical considerations can promote a morally sound resolution.
Clarifying the intent
The case of Mr. French is particularly charged because of the references made (by the daughter) to physician assistance in suicide (PAS) and even (by the son) to euthanasia. These two practices differ in the degree to which the patient himself or the health care provider is responsible for the final outcome, that is, the patient’s death . But they are similar in that both practices are aimed at that outcome. The patient’s death is not simply an accident, nor even an undesired but tolerated side-effect. Both in PAS and euthanasia, the patient’s death is intended and the interventions are specifically chosen to bring about that outcome.
However, Mr. French’s son is mistaken in his contention that every decision to withhold a life-sustaining treatment equates or should equate willingness to end the patient’s life. As explained in the first part of this article, a willingness on the part of care givers to let go does not logically equate a willingness to bring about the patient’s death. The former reflects an acceptance of one’s limited powers as a healer in the face of human frailty and mortality; the latter reflects a desire to exert power over the situation and a belief that an enacted death is morally preferable to a natural death.
There certainly are instances in which withholding or withdrawing a life-sustaining treatment constitutes neglect and may be tantamount to assisting in suicide or even euthanasia. But the daughter is mistaken in concluding that withdrawal of the ventilator of Mr. French necessarily qualifies as such. Or at least the facts as presented do not allow for such a conclusion. The more likely interpretation is that a third and final attempt at withdrawing the ventilator would be motivated by the health care team’s respect of the patient’s autonomous decision to forgo further ventilation, and not be aimed at bringing about the patient’s death.
In order to increase the odds of achieving consensus among all involved about the overall goals of treatment and care, it would be prudent for the medical team to meet with the patient and his children to explicitly discuss these goals. Except in those few countries where euthanasia is legal, it should be easy to reach consensus that the principal goal of the care is not to end the patient’s life but shall only be to make the patient’s remaining time of life the best possible time of life. Exactly how much time of life can be gained through medical interventions and at what price has yet to be ascertained. But the patient’s death shall not be anybody’s goal.
Having now agreed on the broad goal of the care to be rendered, the medical team can begin to determine which medical interventions are indicated for Mr. French, and which would be futile. Any treatment that is indicated should be presented to Mr. French for his consent. But any intervention that is deemed futile should be withheld or withdrawn.
We stipulated earlier that a treatment is medically indicated, as opposed to futile, if it is likely to benefit the patient. This definition contains two terms that health care professionals use routinely but that are actually very difficult to define and ascertain. “Likelihood” may seem a simple statistical concept, representing the odds that a particular outcome will come about. But what is the ethical relevance of such odds? Should a physician abstain from any treatment that has only a 49% chance of benefitting the patient because the treatment is more likely to cause harm than good? Would a patient be a poor steward of his God given life if he refuses a treatment that has a 10% chance of extending his life? What if the odds are 25%? Or 5%?.
Equally difficult is it to define the concept of “benefit.” To benefit a patient literally means to do good for the patient. But this presumes that we know what is good for the patient. Clearly, an assessment of what is for the good of the patient is not a scientific, value neutral judgment. But neither are derivative assessments, such as what is normal or abnormal, what is healthy or unhealthy, physiological or pathological. None of these terms is value neutral.
In most clinical scenarios, we can use these terms without actually defining them because the goals of treatment are clear and mutually agreeable to both the patients and their caregivers. But when health can no longer be achieved, when life’s end is nearing, when suffering is severe and the means to relieve it have themselves nasty side-effects, it is suddenly no longer self-evident what is in the patient’s best interests, neither to the health care professionals, nor to the patients’ family members or even the patients.
Thus, it would behoove the team to very carefully assess the specific goals of continued treatment of Mr. French. Is the patient tired of living with his disabilities and no longer able to muster the mental energy to adjust his life yet again to still more restrictions on his physical functioning? Does he dread being held hostage for the remainder of his life to a breathing machine? Is he angry and upset about the disappointing outcome of the surgery but deep down longing for a few more years on this earth?
Upon achieving more insight into the specific goals, the medical team can determine the available means to achieve those goals, how likely the goals can be achieved with those means, and what are the unintended but likely and harmful side-effects of the various treatment options. Armed with a carefully considered set of treatment options, the team might be able to provide Mr. French with a third alternative between more of the same, or death. And if nothing else, an honest and humble admission of the team’s own moral discomfort with either of the two aforementioned options may lead to some sort of negotiated deal between patient and team that buys the team more time to develop alternative options, and assures the patient that the medical team is ready to let him go when the extension of the treatment trial has run its course without yielding the improvement that everybody had been hoping for.
Competence and consent
Almost as difficult, or at least as contentious, as defining and determining futility is the definition and determination of patient decision making incompetence. As long as patients agree to proposed treatments, medical providers tend to assume that patients are competent – as if the mere fact that a patient agrees with his physician proves that the patient is competent. Conversely, if the patient does not consent or withdraws an earlier consent, almost immediately questions will be raised about his competence. This equation of a patient refusal with patient decision making incompetence makes a mockery of patient autonomy and signals a return to old-fashioned paternalism.
But even if we grant that this is not how patient decision making incompetence should be ascertained, that does not tell us how it should be done. As recent research has made clear, there is no consensus among either ethical, legal, or psychological experts about the definition and determination of this key concept in medical ethics . There is even less agreement about the determination of reliable alternate sources of consent for treatment after patients have been determined incompetent.
In the case of Mr. French, it is possible that the unexpected and very disappointing outcome of the cardiac surgery has caused a depression. It would be important for the health care team to assess whether such a depressive mood is clouding the patient’s free decision making abilities to such an extent that he is incompetent to provide consent. But unless and until Mr. French has been proven incompetent, he should be considered competent.
Also, if Mr. French were to be found incompetent, this does not suddenly justify continuing the ventilation. The team would still need to get the consent for continued treatment from somewhere. It is not at all clear how or from whom the consent for continued ventilation can be obtained in this case. And it is certainly possible that a surrogate decision maker would likewise refuse continued ventilation, arguing that Mr. French, had he been competent, would himself have refused.
For a consent to treatment to be valid, it must be issued by a competent patient or surrogate, and it must be an informed consent. Although it is not the case that a patient’s refusal of treatment is valid only if it is an informed refusal, the care team should always strive to properly inform the patient about his condition, prognosis, and options. The facts of the case scenario do not tell us whether Mr. French, while competent, has been properly informed and carefully considered the information provided. For example, does he know what options are available to him besides a life in the ICU? Has he met other patients who have learned to live with similar disabilities? Also, is he being protected against too much information, specifically distracting and confounding information provided by his two quarreling children?
When death comes knocking on the door, patients, family members, and health care providers alike shift into rescue mode . We want to do something, try another diagnostic tool, attempt another medication, enroll in a clinical trial, anything. Add to this drive to act the widespread belief that medicine can literally achieve miracles, and it is easy to understand why it is so difficult for all involved to withhold a life-sustaining treatment and even more difficult to withdraw one that has already been started.
In these situations it behooves care givers to remember that, ethically, the default position is not to treat. It is the initiation or continuation of medical interventions that must be ethically justified. Such interventions, including life-sustaining medical treatments, are ethically justified only if both of the following necessary conditions have been met: (1) the treatment must be medically indicated; and (2) there must be a consent for the indicated treatment.
As in the case of Mr. French, it is often difficult to ascertain which medical interventions are indicated and which have become futile. Moreover, a risky intervention with a very small chance of success may be beneficial to one patient but futile for another. But once it has been determined that a particular intervention is not indicated, it should not even be offered to the patient (though it may necessary to explain to the patient why the intervention is futile). And if an intervention was initiated in the belief that it was going to benefit the patient, but has since been found to do more harm than good, it should be withdrawn. Such forgoing of a futile medical intervention is not tantamount to passive euthanasia but acquiescence in the mortality of human beings and the limits of medical power.
Because the patient’s good is not a value-neutral, statistical concept, care givers have to involve their patients in order to determine what treatments will benefit them and what treatments, hence, are indicated. But since the patient is the one undergoing the medical intervention, the patient always gets the final say. Treatments, even those that are clearly indicated, cannot be started or continued unless and only as long as the patient consents.
Mr. French’s refusal of continued ventilation does not prove his incompetence. Unless Mr. French is diagnosed as suffering from a clinical depression that clouds his decision making capacity, we have to assume he is competent. Hence, the members of the medical team are ethically required to abide by his refusal of further ventilation. That does not bar the team members from expressing their own moral discomfort or recommending a longer trial period, as long as such “pressure” is exerted in a manner that fully respects the patient’s autonomy. But if Mr. French persists in his refusal, the care team has no choice but to discontinue the ventilation, and then seek to provide the best palliative support possible for Mr. French.
Finally: even if Mr. French were to reveal that by refusing continued ventilation, he is actually seeking to end his own life, this does not mean that the physicians likewise seek to bring about the patient’s death if they remove the ventilator. They need the patient’s consent to treat or continue treatment, and they no longer have it. Stepping back, then, does not amount to assisting in the patient’s suicide, but is a token of respect for the patient’s autonomy.
The authors declare that they have no competing interests.
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From Moral Issues that Divide Us
Three Definitions of Death
What People Think
Obligations to God in End-Of-Life Situations
Obligations to Oneself in End-Of-Life Situations
Obligations to Society in End-Of-Life Situations
The Active-Passive Distinction
Active Euthanasia and the Doctrine of Double Effect
Passive Euthanasia and Ordinary vs. Extraordinary Care
Public Policy Issues
The Legal Status of Euthanasia
The Hospice and Palliative Care Alternative
Common Arguments Pro and Contra
The Conservative Position
The Liberal Position
A Middle Ground
Reading 1: Physician Assisted Death in Oregon(Kathryn Tucker)
A man named Bob had stomach cancer and, while he initially managed his illness successfully, after about 3 years it got the best of him, and treatments were ineffective. During his final months he was vomiting blood, lost about half his body weight, was incapable of walking, and experienced a degree of pain that he never had before. Although he was hospitalized some of the time, he preferred to live out his remaining days at home, and his wife took on the responsibilities of caring for his basic needs as he lay in bed. A meticulous planner, Bob foresaw the possibility of a horrible end to his life and consequently stockpiled a lethal dose of medication; as a backup precaution, he had a loaded gun by his bed. Even with pain killers, his suffering eventually became overwhelming. He resolved to end his life, but by then was too weak to take the drug himself or even pick up his gun. He asked his wife to assist him, but she could not bring herself to do it. He turned to family members, friends, or anyone who might be there visiting. While sympathetic to his struggle, they all refused, many out of fear of being prosecuted for murder. He finally died at home in his bed.
Most of us hope to live long and stay healthy throughout our allotted time on this planet, and would say that we would like to die painlessly at 100 years of age while in good health. The realities of death, though, are much less rosy, and far too many people die in miserable conditions with illnesses that linger on and on, such as what happened with Bob. All societies, as far back as human history gives us records, have struggled with how best to deal with people experiencing these sorts of deaths. Invariably the question arises: are we morally justified in killing people in this situation as a means of putting them out of their misery? In recent times this has been associated with the notions of “the right to die” and “death with dignity.” In this chapter we will look at some of the options surrounding this issue and their possible moral justifications.
Moral controversies about death in situations like Bob’s usually involve three conditions: the person seeking death (1) is terminally ill, (2) is in intense pain, and (3) voluntarily chooses to end his life to escape prolonged suffering. For brevity, in the discussion below we will use the expression “end-of-life situations” to refer to cases in which these three conditions apply.
There are different ways of bringing on the death of someone who is in an end-of-life situation. First is suicide, which is defined as self-killing. People kill themselves for a variety of reasons, and in many cases do so because of mental health problems. But the type of suicide situation that is relevant for us here is one which involves the three end-of-life conditions listed above. If Bob had successfully taken a lethal dose of drugs or shot himself, that would have counted as a suicide of this sort. There several obstacles to this approach. One, as we have seen with Bob, is that some people may not have enough control over their bodies to successfully perform a death-causing act. Many people do not know how to even successfully carry out a suicide or have access to the right drugs to do so. There is also the issue of courage: overriding one’s survival instinct is perhaps one of the most difficult tasks a human can perform, and the degree of mental resolve necessary for end-of-life suicides may be impossible for some people to muster. Some people who have attempted end-of-life suicide have failed, and in the aftermath they report that, while they wished they would have succeeded, they doubt whether they could regain the courage to try again.
A second method is assisted death, sometimes called assisted suicide. This is where a third party provides a person with the resources to carry out his or her death. For example, it would have been an assisted death if Bob’s wife handed him the pills or his loaded gun, and Bob himself used these to kill himself. What’s critical with assisted death is that the third party only provides the death causing agent, and the person seeking death himself actually carries out the death-causing act. Spouses and family members, though, are not necessarily the best third-parties to assist in death. Sometimes there may be conflicts of interest, such as if Bob’s wife was getting tired of playing nurse to him and wanted the situation resolved quickly. The ideal assisted death would be one that was done under the supervision of a physician, who would be impartial, know details of the patient’s condition, and know what the most effective death-causing medication would be.
A third method is euthanasia, which literally means good death, and is defined as “mercy killing.” Here it is the third party that actually performs the death-causing act, and not the person himself who is seeking to die. If Bob’s wife took his gun and shot him, or injected him with a lethal dose of drugs, that would count as euthanasia. There are different types of situations in which euthanasia might be carried out, and this leads to additional distinctions. First, there is the distinction between active and passive euthanasia. Active euthanasia is where a third-party performs a consciously overt action that brings about the death of the person, such as if Bob’s wife had shot him herself. In a clinical setting, a doctor might actively perform euthanasia by administering a lethal dose of drugs to the patient, through pills or an injection. By contrast, passive euthanasia is when the third party allows the patient to die by either (1) not intervening with a treatment at all, or (2) discontinuing a treatment when the situation is futile. As an example of the first type, suppose that Bob is dehydrating from his stomach cancer, physicians do not give him fluids intravenously, and he consequently dies. As an example of the second, suppose again that Bob is dehydrating from his cancer, the physicians give him fluids intravenously, but then remove it later when treatment attempts proves futile, and he consequently dies. The first of these is a straightforward case of death by complete non-intervention. The second is a case of retroactive non-intervention, where the physicians attempt to return him to his condition prior to their intervention. Passive euthanasia situations can become further complicated when physicians can allow a patient to die by not treating a secondary illness that the patient has. Suppose, for example, that Bob got an infection that was easily curable with an antibiotic drug. If Bob took the antibiotic, then he would still live out his remaining weeks in pain from the cancer. But, if he did not take the antibiotic, then, in his already weak condition, the infection would cause him to die in a matter of days. Accordingly, Bob’s doctor might decide to hasten his death by either not treating him with the antibiotic to begin with or discontinuing an antibiotic treatment.
Another distinction is between voluntary and non-voluntary euthanasia. Voluntary euthanasia is when a competent adult requests or gives informed consent to a particular death-causing action. This is the scenario that we have so far been presuming with Bob’s case: he is conscious, rational, and in a proper mental state by which he can make a willful request. Often, though, people do not have the mental competence to make these decisions, such as when they are unconscious, delirious, or demented. In these situations an act of euthanasia would be nonvoluntary when the decision is made by a third party, and not the person himself who is to die. For example, if Bob fell into a coma, Bob’s wife might have made the decision to terminate his life. It is important to note, though, that the term “nonvoluntary” does not mean the same thing as “involuntary.” An involuntary act is one which is imposed on a person against his will, such as if Bob did not want to die and his physician gave him a lethal injection anyway. This would be a case of murder, and not mercy killing. Rather, with nonvoluntary euthanasia, a patient is incompetent to make a decision, and a third-party steps in as a surrogate to make the call on behalf of the patient’s best interests.
Three Definitions of Death
Another crucial issue in end-of-life situations is the definition of death. In many nonvoluntary euthanasia situations patients are not just mentally incompetent, but so brain damaged that questions arise about whether the person is already dead. The bodies of comatose people can be kept alive for decades through artificial life-sustaining treatment, and doing so makes no sense if they have crossed the line between life and death. But what exactly is that line? There are three theories about when death occurs. The first and most accepted one today is the neurological theory which maintains that brain death constitutes the real death of the person. On this view, death occurs for a person when he or she fails to engage in the surrounding world, and brain death is a sign that this has occurred. Persons that we designate as “living” must be receptive to stimuli from their surrounding environment, and be able to act to obtain what they need from that environment. When the brain can no longer sustain these abilities we presume that the person is dead.
Second is the two deathstheory, which holds that the death of a person’s conscious processes is distinct from the death of the person’s body. In essence, the death of your brain could occur while your body remains fully alive. The problem with this approach is that it is to unconventional: we do not think about people as going through two deaths, and, throughout human history we have understood death to be a single event. To be sure, there are difficulties finding the boundary between life and death, but those difficulties do not justify creating a new dual notion of death. Third is the bodily integration theory, which is that the overall integrity of the body rather than the condition of the brain that determines whether the person is dead. Many biological mechanisms in brain dead people remain active, such as the ability to maintain bodily temperature, heal wounds, and fight infection. Brain dead people grow with age and reach sexual maturity. With all of these functions remaining active, it is best to err on the side of caution when considering whether a comatose person is actually dead. Thus, on this theory, the sign of life is whether a person’s body functions in an integrated way. A criticism of this theory is that mere ongoing biological activity in various cells or tissues is not in itself sufficient to mark the presence of a living person. As the neurological theory maintains, some interactive engagement with the outside world is needed to designate human life.
What People Think
As a whole, the U.S. population is sympathetic to both passive euthanasia and assisted death, as reflected in three national surveys (from www.pollingreport.com):
"Which comes closest to your view? In all circumstances, doctors and nurses should do everything possible to save the life of a patient. Sometimes there are circumstances where a patient should be allowed to die." (5/22-24/07)
Always Try To Save Life: 30
Sometimes Allow to Die: 68
"When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?" (5/10-13/07)
Not Unsure: 6%
"Do you think a person has a moral right to end his or her own life under any of the following circumstances?" (11/9-27/05)
"When this person has a disease that is incurable"
"When this person is suffering great pain and has no hope of improvement"
"When this person is an extremely heavy burden on his or her family"
"When this person is ready to die because living has become a burden"
Since ancient times philosophers have discussed voluntary death, but usually did so with the focus on suicide, rather than euthanasia as we do today. A good example is Stoic philosophy, which defended suicide as a “reasonable departure” from this life. They argued that there are five good reasons for voluntarily ending life, which parallel five good reasons for leaving a party. Party guests may depart because of the following:
(1) a sudden need such as the arrival of a friend (that is, a call to sacrifice himself for his country),
(2) party crashers breaking in and shouting obscenities (that is, tyrants doing him violence),
(3) the food turning bad (that is, disease obstructing the use of his body),
(4) the food being eaten up (that is, poverty)
(5) the company being drunk (that is, insanity, which is drunkenness of the soul).
[Arnim, Stoicorum, 3.768]
Of these five justifications, it is the third that pertains specifically to the end-of-life situations that concern us in this chapter, namely, disease obstructing the use of someone’s body. The founder of Stoicism explicitly stated that it is reasonable to end one’s life if we “suffer intolerable pain, mutilation, or incurable disease” (Diogenes, Lives, 7.1).” While Stoic philosophers typically thought of a chronically ill person ending his life entirely by his own hand, this third justification easily extends to assisted death and even euthanasia. We begin this section by considering the arguments of several classic moral philosophers on this topic. Like the Stoics, they discuss a range of reasons for suicide, but we will confine their positions to end-of-life situations where assisted death and euthanasia might be options.
Obligations to God in End-Of-Life Situations
Philosophers of the past often analyzed end-of-life situations by considering whether suicide or euthanasia would violate one of three fundamental moral obligations: those to God, those to oneself, or those to other people. We begin with moral obligations to God. The standard position on this was expressed 2,500 years ago by Pythagoras, the Greek philosopher and mathematician, who stated: “we are forbidden to abandon our station or post of life without the orders of our commander, that is of God” (Cicero, On Old Age). That is, like soldiers, we are duty-bound to the life that God has assigned to us, and are not permitted to depart by taking our own lives. Plato echoes this view using the metaphor of a prisoner:
There is a doctrine of the mystics that we are in a kind of prison and must not free ourselves from it and escape. This is a great mystery which I do not quite understand. Yet I too believe that the gods are our guardians, and that we are a possession of theirs. . . . [Plato, Phaedo, 62b]
Like prisoners, we are confined by the life that the gods assign us, and are not free to depart from it through voluntary death. With yet another metaphor concerning property ownership, Plato asks us to imagine that one of our possessions, such as an ox or donkey, took the liberty of ending its life without our permission. Surely, he argues, we would be angry at the animal and would want to punish it if we could. We find one more metaphor in Thomas Aquinas (1225-1274): “whoever takes his own life sins against God, just as he who kills another’s slave sins against that slave’s master. . . for it belongs to God alone to pronounce the sentence of death and life” (ST 22.214.171.124). Of these various metaphors, it is the one of the duty-bound soldier that has resonated through the millennia, and is used in debates even today. But whether we view God as our commanding officer, prison warden, owner, or master, the point is the same: my life does not belong to me but rather to God, and what I can do with my life is subject to his special authority. God assigns particular tasks and obligations to me that I must carry out, where some are pleasant and others unpleasant. But at no point am I authorized to end my own life, regardless of how unpleasant things get, since that decision rests with God alone.
Against this argument, David Hume suggested an alternative view of what the divine being expects of us. God is not our commanding officer, but instead takes a completely hands off approach to governing the world, and does not micromanage anything that happens in our lives. God established general laws of nature to regulate the physical events of the world, and left it to us to navigate our way through the life with the use of our human minds. Our normal human activity involves imposing our own purposes on the physical world, such as when we alter the flow of a river. Now, according to Hume, suicide is just another situation in which we alter the physical world for our own purpose, specifically our physical bodies. He writes,
“It would be no crime in me to divert the Nile or Danube from its course, were I able to effect such purposes. Where then is the crime of turning a few ounces of blood from their natural channel?” [“Of Suicide”]
We might think that taking our own lives is different than changing the flow of a river, and God has reserved the former right especially for himself. But, Hume argues, if determining the time of death is entirely up to God, then it would also be wrong to lengthen our lives, such as through medicine: “it would be equally criminal to act for the preservation of life as for its destruction.” Further, the causes of human death are seemingly arbitrary and insignificant: the most trivial thing can end our lives, such as a hair or fly that carries a disease. It is absurd to say that through our own human choice we cannot rightfully “dispose of what depends on such insignificant causes”. Thus, for Hume, we do not violate any obligation to God by ending our own lives.
So, who is right, Pythagoras or Hume? That is, does God have ownership of our lives and command what we do, or did God hand over authority of our lives and actions to us? This question cannot be answered impartially, but depends on one’s faith tradition. Hume himself was not a religious believer, and his conception of a hands-off God does not match up with any traditional religious system. For traditional believers, it is Pythagoras’s view of divine authority that makes sense, which means that suicide, assisted death and active euthanasia are wrong.
But what about passive euthanasia, which is less controversial than active euthanasia: might that practice be permissible under the traditional Pythagorean view? American legal scholar Simeon E. Baldwin argued that it is. Baldwin accepts that each person is placed on earth just as a soldier is at a post of duty until relieved by his commanding officer. Accordingly, suicide is impermissible, regardless of how empty and burdensome life may have become. If a recovery is possible, he argues, all means to that end should be exhausted. However, if it is not possible, then to keep the suffering person alive through medical means “is simply to prolong a useless struggle at the cost of misery to the patient, and to the profit of no one but the doctor and the nurse.” The dying person is not “bound by any rule of religion or law of conduct” to take such action, and the will of God is expressed through the direction that nature has taken: “The call has come. The sentry is to be relieved”. Baldwin makes it clear that he is referring only to people in hopeless conditions:
I am thinking of the victim of a cancer which has pursued its way to the verge of some vital organ; of the sufferer from consumption, worn to a shadow of his former self; of him whom, as we say, the doctors have "given up," and who is simply lingering on the brink of a kindly grave . . . . [H]e has, it seems to me, the right to reject such aids to the continuance a little longer of a life that has no remaining value. [“The Natural Right to a Natural Death,” Journal of Social Science, 1899, 37]
He argues further that this same rationale applies to newborns with severe defects who, without medical intervention would live only a few days or weeks, and, with intervention, would be condemned to a life of misery. If the child himself could “be consulted, he would surely say, ‘Leave me to my God’.”
Thus, for Baldwin, passive euthanasia with both adults and infants is consistent with our obligation to God. Whether Baldwin is correct is again a question for one’s faith tradition. But, unlike Hume, Baldwin holds to a conception of God that is actively involved in human affairs and authorizes when each of our lives should end. This will appeal more to traditional believers than Hume’s view.
Obligations to Oneself in End-Of-Life Situations
We next consider whether voluntarily ending one’s life violates our obligation to ourselves. Aquinas argues that it is indeed wrong since it is contrary to self-preservation and the natural life asserting purpose embedded in human nature. Morality, for Aquinas, is grounded in “that which we naturally seek after”, and we look to our natural human inclinations to see exactly what that is. We have, for example, natural inclinations to shun ignorance and educate our offspring, and, consequently, these become our moral obligations. At the top of the list of our fundamental natural inclinations is self-preservation:
every substance seeks the preservation of its own being, according to its nature. Because of this inclination, whatever is a means of preserving human life, and of warding off its obstacles, belongs to the natural law [Summa Theologica, 126.96.36.199]
He describes this drive for self-preservation as a type of self-love by which we resist deterioration and annihilation as much as possible. Suicide, then, is contrary to the natural inclination that “every man should love himself” (Summa Theologica, 188.8.131.52).
Immanuel Kant (1724-1824) offers another self-preservation argument against suicide. While Aquinas links self-preservation with natural law, Kant sees it as a necessary consequence of our inherent value as rational beings. Unlike animals which are driven by mere instinct, I as a human have the capacity to make rational free choices, and by doing so I can fashion the world around me and in creative and beneficial ways. In Kant’s words, I am an “end in itself”, and not a mere means to an and like some object or animal. In this manner, my human life is a “holy trust” that I cannot violate. If I kill myself, I am abandoning my humanity and turn myself into a mere object to be used and abused. “The rule of morality,” Kant says, “does not allow suicide under any condition because it degrades human nature below the level of animal nature and so destroys it” (Lectures on Ethics). As such, self-preservation is our highest obligation, and that must govern the way we treat our bodies. If my injured foot threatens my life, I can have it amputated and preserve my life by doing so. In that situation, I have the right of disposal over my body. But if I end my life, I am robbing myself of my person, not preserving it. Even in end-of-life situations where I am in great misery, I still cannot abandon my humanity and the holy trust of my life. He writes,
If someone destroys himself in order to escape from painful circumstances, he uses a person merely as a mean to maintain a tolerable condition up to the end of life. But a man is not a thing, that is to say, something which can be used merely as means, but must in all his actions be always considered as an end in himself. [Groundwork, 2]
Hume once again objects to these types of arguments against suicide. Many suicides, he maintains, are done for good personal reasons that are consistent with moral obligations to oneself: “age, sickness, or misfortune may render life a burden, and make it worse even than annihilation”. Yes, the instinct to survive is incredibly strong, and, following Kant, so too is our sense of the inherent value of human life. But, as Hume argues, this only shows that in some situations the motivation to die is so powerful that it overcomes the natural fear of death. People just do not throw away their lives while they are worth keeping, especially in end-of-life situations. Our natural horror of death is so great that “small motives will never be able to reconcile us to it.” In end-of-life situations, my desire to die may very well overpower my natural instinct to survive and sense of inherent value, and my obligation to myself may rest with ending my misery. Thus, for Hume, in at least some situations suicide does not violate a moral obligation to oneself.
Hume does not explicitly state that we have a moral “right to die” in end-of-life situations, but contemporary American philosopher Joel Feinberg makes just that point, maintaining that the right to die is in fact embedded in our fundamental right to life. He writes,
Just as we have rights to come or go as we choose, to read or not read, to speak or not speak, to worship or not worship, to buy, sell, or sit tight, as we please, so we have a right, within the boundaries of our own autonomy, to live or die, as we choose. The right to die is simply the other side of the coin of the right to live. [“Euthanasia and the Inalienable Right to Life”, Philosophy and Public Affairs, 1978, 7]
According to Feinberg, then, the right to life includes my liberty to both choose to live, and choose to die if I deem that best for me. In end-of-life situations, I am morally permitted to end my life if I so choose. If my illness incapacitates me so that I cannot perform the death causing act myself, I can still waive my right to life which would in essence be “releasing at least one other person from his obligation not to kill me.” In this way, the right to life entails my right to die through either suicide or voluntary euthanasia. A potential problem with Feinberg’s defense of the right to die is that, if life truly is a liberty right to exercise one way or the other as we see fit, then we would be morally justified in ending our lives for temporary reasons. If I have a few exceptionally bad weeks of physical or emotional suffering and decide that life is not worth it, not only would my suicide be morally justifiable, but I could voluntarily release someone from their obligation to not kill me, and she would not be morally accountable for my death. The scope of this right to die is thus too sweeping.
But there may be a way to salvage the right to die, and limit it to a more acceptable level by carefully examining the concept of “moral obligations to oneself” and precisely who that “self” is. Philosophers often speak about the problem of personal identity over time, and how, as the years go by, my life changes so radically that I cannot find any permanent characteristics that make me the same person at different stages. My body, my memories, my personality all change. Rather than just being one person, it seems that I am many persons over time, with one progressively morphing into the next. While we cannot solve this philosophical problem here, let’s assume that, morally speaking, I am not just one person, but instead a collection of several moral persons spread over time. Thus, in the same way that I have a moral obligation to you and other people that I come in contact with, I similarly have a moral obligation to my future selves. For example, I have an obligation to become educated, work hard at my job, and stay out of jail, not just because of how these benefit me now, but also how they will benefit my future selves. For similar reasons, I should not kill myself even if life is currently bad for me, since I would also be depriving my future selves of their lives without their consent. I cannot assume that the desperation that I feel now will also be felt by them, and I would be robbing them of their right to life. The situation is different, though, in end-of-life situations: if I am terminally ill, then there are no more future selves and I speak only for myself. In this situation, I can exercise my right to die without violating another self’s right to life, and, similarly, waive someone of his obligation not to kill me. Consequently, the right to life might reasonably include the right to die, but only in end-of-life situations.
Obligations to Society in End-Of-Life Situations
We lastly consider whether suicide and euthanasia violate our obligation to society. Once again, Aquinas argues that they do. Every person is a member of the community, and not just an isolated individual existing on one’s own. We each have our own jobs and social roles that we fill, the combination of which makes up our society. In a sense, each person belongs to the community and, thus, “by killing himself a person injures the community” (Summa Theologica, 184.108.40.206). Later philosophers, particularly utilitarian ones, similarly focused on the specific harms to society caused by ending one’s life. This is especially clear with British philosopher William Godwin who directly links utilitarian reasoning with a prohibition against suicide:
In common with every branch of morality, it is a topic of calculation, as to the balance of good and evil to result from its employment in any individual instance. . . . We should consider that, though the pain to be suffered by ourselves is by no means to be overlooked, we are but one, and the persons nearly or remotely interested in our possible usefulness innumerable. Each man is but the part of a great system, and all that he has is so much wealth to be put to the account of the general stock. [Enquiry, 2.2]
According to Godwin, since the morality of an action is determined by weighing its good and bad consequences, even if I am suffering, it is wrong to end my life since my life has a larger social benefit on others. William Paley argues further on utilitarian grounds that, even if my particular situation appears to justify ending my life, we need to consider the negative impact that suicide as a general rule has on society (Principles, 4.3). Further, as a rule, the misery that I experience through my continued existence is outweighed by the sorrow that others would experience by my premature death. Adam Sidgwick argues further that, as a rule, permitting suicide in end-of-life situation has negative consequences on society by encouraging suicidal impulse in others and making secret murder easier (Methods, 3.11.7)
But Hume, who is also a utilitiarian, has a response to this reasoning. Yes, we do have obligations to society, but they all have limits. For example, my community cannot demand that I do volunteer work every waking hour of the day, regardless of the social good that it might do. In Hume’s words, “I am not obliged to do a small good to society at the expense of a great harm to myself.” That being so, he asks “why then should I prolong a miserable existence, because of some frivolous advantage which the public may perhaps receive from me?” If I am in an end-of-life situation, the good that I can do to society is very minimal. In fact, to tend to the endless complications of my terminal illness, I must resign all of my social activities. “Why may I not cut short these miseries at once by an action which is no more prejudicial to society?” Thus, in end-of-life situations, the interest I have in ending my misery outweighs the few remaining obligations that I have to society. Suppose further that my end-of-life situation is so horrible that I become a burden to others by draining financial resources and requiring around the clock attention. In such situations, my decision to end my life is not only morally permissible, but it may be morally praiseworthy. In Hume’s words, “my resignation of life must not only be innocent but laudable.” Hume is not suggesting that I would be morally required to kill myself in this circumstance, but, rather, that it would be an act of kindness towards others that I should place in the balance when making my decision.
What can we conclude about whether suicide violates obligations to God, oneself or others? In each case the question involves the range of freedom that we rightfully have. With obligations to God, the issue is whether God has reserved for himself the decision to end my life, or, instead, has granted me the freedom to make that choice. This, we have seen, is a matter of one’s faith tradition, but, following Baldwin, passive euthanasia may still be permissible. With obligations to oneself, the issue is whether I have the freedom to determine for myself the value of my own life, or whether I am constrained by some special feature of human nature, such as a natural instinct to survive or the inherent value of human life. Following Feinberg, we have seen that the right to life may entail a right to die in end-of-life situations. Lastly, with obligations to others, the key question is whether my obligation to society is more compelling than my freedom to choose my own destiny. Hume appears to have the stronger argument here, namely, that, by remaining alive in end-of-life situations, society’s gain is trivial and my loss is potentially great.
The Active-Passive Distinction
We turn next to questions about the moral permissibility of active euthanasia, which is the most controversial of all the options in end-of-life situations. Active euthanasia is doubly controversial, since, first, it is debatable whether the patient even has the right to end his own life, and, second, because a different person is now stepping in to perform the death-causing action. The distinction between active and passive euthanasia is accepted by most health care practitioners and has become the cornerstone of many debates on the morality of euthanasia. The general assumption is that actively killing someone is morally worse than passively letting someone die, and this is reflected in the amount of guilt that we might feel in each case: we would feel worse by actively killing someone rather than just allowing someone to die. But, in an influential article titled "Active and Passive Euthanasia" (1975), author James Rachels challenges this reasoning. From a strictly moral standpoint, he argues, there is no difference between the two, and since we accept passive euthanasia, we should also accept active euthanasia because it is more merciful. For Rachels, the outcome of both active and passive euthanasia is ultimately the same: the death of the patient on humanitarian grounds. The difference between the two is often played up because we frequently hear of terrible cases of active killings, but not of passive killings.
A common argument in favor of the active-passive distinction is that, with passive euthanasia, the doctor does not have to do anything: he just lets nature take its course. However, Rachels responds, letting the patient die is an action that the doctor performs by not performing other actions. It is parallel to insulting someone by not shaking their hand. Suppose, for example, that a doctor let an otherwise healthy patient die who was suffering from a routinely curable illness; this would count as an intentional killing, even though it was done passively. He writes,
If a doctor lets a patient die, for humane reasons, he is in the same moral position as if he had given the patient a lethal injection for humane reasons. If his decision was wrong -- if, for example, the patient’s illness was in fact curable -- the decision would be equally regrettable no matter which method was used to carry it out. And if the doctor’s decision was the right one, the method used is not in itself important.
According to Rachels, not only is there no real moral distinction between active and passive euthanasia, but, by improperly creating such a distinction, we do more harm than good. Techniques of passive euthanasia prolong the suffering of the patient, since it takes longer to passively allow the patient to die than it would if active measures were taken. In the meantime, the patient is in unbearable pain. Since in either case the decision has been made to bring on an early death, it is cruel to adopt the longer procedure.
Finally, he argues, the active-passive euthanasia distinction encourages physicians to make life and death decisions on irrelevant grounds. For example, Down's Syndrome infants sometimes have correctable secondary problems, such as having an intestinal obstruction. But decisions are made to forego corrective surgery (and thus let the infant die) simply because the parents do not want the burden of having a Down's Syndrome child. Rachels writes,
But notice that this situation is absurd, no matter what view one takes of the lives and potentials of such babies. If the life of such an infant is worth preserving, what does it matter if it needs a simple operation? Or, if one thinks it better that such a baby should not live on, what difference does it make that it happens to have an unobstructed intestinal tract? In either case, the matter of life and death is being decided on irrelevant grounds. It is the Down’s syndrome, and not the intestines, that is the issue. The matter should be decided, if at all, on that basis, and not be allowed to depend on the essentially irrelevant question of whether the intestinal tract is blocked.
The active-passive euthanasia distinction merely encourages these groundless decisions. Again, Rachels’s central point is that society should accept active euthanasia since we already accept so called passive approaches, and there is no legitimate moral difference between the two.
Is Rachels correct about the lack of a moral distinction between the two types of euthanasia? Maybe not, for we can think of other scenarios in which there is a noticeable moral difference between passive and active approaches to conduct. Suppose that I passively watch someone accidentally step into a mud puddle, and do nothing about it. That would be insensitive, but not malicious. Suppose instead that I actively push him into the puddle; that would be malicious, and the person would be morally entitled to sue me or have me arrested. We can think of parallel situations: A security guard passively watches someone shoplift from a store vs. actively helps him do it. A police officer passively watches an addict buy illegal drugs without arresting him vs. actively gives the addict the drugs. A teacher passively watches a student to cheat on an exam vs. actively helps him cheat. These are situations in which both the passive and active conducts are morally wrong, but the active is worse. We can also think of scenarios in which the passive and active conducts are morally right, but the active conduct is in fact morally superior. For example, it is good for me to passively allow someone to borrow my tools to fix his car, but it is even better if I actively help him with the repair.
None of these examples perfectly parallel the cases of passive and active euthanasia, but they show that our moral judgments often differ based on the degree of direct involvement that we exercise in a situation. Like these examples, active euthanasia involves more direct involvement than passive euthanasia. Sometimes active involvement may make a euthanasia situation morally worse. Suppose, for example, that a newborn has a defect that if untreated would result in its death, but if treated would result in a relatively normal life. It may be wrong to passively allow it to die, but it would be worse to actively kill it. But other times active involvement may make a euthanasia situation morally better, such as by actively killing a terminally ill person whose pain cannot be adequately suppressed with drugs. This would be more merciful than having him linger in agony with a more passive approach. In a perfect world, it would be best to assess each end-of-life situation on its own merits and determine whether active euthanasia is morally preferable to passive. But in an imperfect world where we need quick rules to guide us through complex decisions, it may be best to err on the side of caution in matters of life and death, and give a default moral preference to passive euthanasia.
Active Euthanasia and the Doctrine of Double Effect
Critics of active euthanasia sometimes defend what they believe is a more blame-free way of bringing on a patient’s death, and one particularly popular approach is based on the doctrine of double effect. According to this doctrine, an act of killing is justified if the death is only a side effect (or an unintended consequence that one could foresee), but is not the primary intended consequence of one’s act. For example, I am justified in killing someone in self-defense since my primary aim is to protect my life, while the foreseen side effect is the death of the attacker. Thomas Aquinas, the originator of this notion, describes it here:
Nothing hinders one act from having two effects, only one of which is intended, while the other is distinct from the intention. . . . Accordingly, the act of self-defense may have two effects, one is the saving of one's life, the other is the slaying of the aggressor. Therefore this act, since one's intention is to save one's own life, is not unlawful, seeing that it is natural to everything to keep itself in "being," as far as possible. [Summa Theologica, 2-2, Q. 64, A. 7]
Applied to the euthanasia situation, a physician is justified in administering an overdose of some pain medication to a patient if the primary aim is to relieve some ailment, while the secondary side effect is the death of the patient. The point is that, even though the physician knows with 100% certainty that the patient will die from the pain medication overdose, the act is morally justifiable since the doctor is intending only to alleviate the patient’s pain, and not to kill the patient. The doctrine of double effect involves three specific conditions:
1. The act itself must be good, or at least morally neutral, independent of its consequences.
2. The agent must intend only the good effect. The bad effect can be foreseen, tolerated, and permitted, but it must not be intended.
3. The good effect outweighs the bad effect in circumstances sufficiently grave to justify causing the bad effect.
Physician Walter R. Hunter graphically describes how he applied the doctrine of double effect with the mercy killing of an AIDS patient. The patient was having difficulty breathing, and, to slow down his respiratory rate, Hunter gave him a small injection of morphine. When this had no effect, he gave him another injection, then another until his breathing reached a normal rate. However, the patient’s breathing continued to drop until after several minutes he stopped breathing altogether and died. Hunter writes,
I knew that there was a slight risk of lethal side effects to the medications. But I knew that I might have to risk them, tolerate them in part or in totality if I were to attempt to ease his breathing. I did not intend for him to die, but I did intend to make his breathing easier. Had I intended the side effect of cessation of breathing, I would not have given incremental doses of medicine over time and observed his clinical response with each dose. I would have given a very large dose all at once to stop the breathing. [ “Pain Relief Promotion Act,” U.S. Senate Judiciary Committee Hearing, 2000]
Accordingly, Hunter does not view this as an act of active euthanasia, but rather considers it a therapeutic treatment with the unintended (but foreseen) side effect of causing death.
A criticism of the doctrine of double effect is that a doctor cannot meaningfully separate in his mind what he “intends” from what he merely “foresees”. Attempting to do so as Hunter does appears to be just verbal trickery for the purpose of making himself feel better about his action. Let’s grant that Hunter intended to regulate his patient’s breathing through the morphine injection. Let’s also grant that he did not hope for his patient to die. Nevertheless, by foreseeing the likelihood of his death through cumulative injections, his mental state might better be described as having a regretful intention of killing the patient. That is, once he foresaw the outcome and acted on it anyway, that act of “foreseeing” transformed into an intention, albeit a regretful one. Recall the common saying that if it walks like a duck and quacks like a duck then it is a duck. Hunter’s mental state and conduct bears all the indicators of active euthanasia, and an implausible distinction between “intending” and “foreseeing” does not change that fact.
Passive Euthanasia and Ordinary vs. Extraordinary Care
Let’s set aside the issue of active euthanasia for the moment and focus just on passive euthanasia. We have seen that there are a variety of end-of-life situations that might involve withholding treatment. The question now is whether it is OK to withhold any type of treatment, or whether some should never be withheld in any circumstance whatever. For example, if a person is in the final stages of cancer, is it morally permissible to withhold beverages from him and let him dehydrate to death? A common way of answering this involves distinguishing between ordinary care and extraordinary care. Generally speaking, ordinary care involves medical procedures that offer a reasonable hope of benefit to the patient but do not involve excessive pain, expense, or other inconveniences. The conservative position on this is that ordinary care should never be denied a dying patient. This is typically associated with food and water, which any patient would expect when staying in a hospital. By implication, a food tube should never be removed from a dying patient, even if the patient is in an irreversible coma.
By contrast, extraordinary care consists of procedures that are unusual, extremely difficult, dangerous, inordinately expensive, or have no reasonable hope of benefit to the patient. Because of these negative features, it may be morally permissible for physicians to forego or withdraw such procedures from dying patients. An artificial heart is a good an example of this since it is accompanied with all of these negative features. Thus, the distinction between ordinary and extraordinary care might serve as a practical guide to determine when passive euthanasia might be permitted.
The ordinary-extraordinary care distinction is a helpful one, but a problem with it is that it may not be easy to determine whether a given medical procedure falls into one category or the other. Artificial hearts may be an obvious example of extraordinary care, but what about respirators, dialysis machines, blood transfusions, or experimental drugs? None of these come with labels marking them as “ordinary” or “extraordinary,” and with medical technology always advancing the problem of deciding is ongoing. Further, the removal of a food tube with dying patients is becoming a more common practice, and this compromises the value of the ordinary-extraordinary care distinction as a practical guide with even the most basic medical procedures. Physicians may seek guidance on these procedures from their hospital, but those decisions would not be morally binding on all physicians.
PUBLIC POLICY ISSUES
Many times our laws line up perfectly well with our moral values. Stealing is immoral, and it is also illegal. Playing tennis is morally permissible, and it is also legal. End-of-life situations, though, often involve a tension between our moral convictions and what we might want enacted into law. Many people feel that, generally speaking, active euthanasia and assisted death are morally permissible. However, because of the challenges with crafting safe public policies, these same people feel that active euthanasia and assisted death should not be legalized, at least not yet. Thus, the political debate about end-of-life situations often focus on the practical problems with implementing death-causing procedures.
The Legal Status of Euthanasia
In the U.S., individual states enact their own laws regarding murder and homicide, and, accordingly, it is for each state to decide for itself how to handle end-of-life situations. Passive euthanasia is legal in all states, where the medical profession itself establishes some guidelines for what types of treatment can be withheld from dying patients. As of now, though, no state permits active euthanasia, and only four states permit assisted death, namely, Oregon, Montana, Washington and Vermont. Oregon was the first, and because of its uniqueness, other states look to it as a test case for what the effects of such a policy might be elsewhere. Enacted in 1994, the specific guidelines of Oregon’s “Death With Dignity Act” are strict, and include the following conditions: (1) the person must be suffering from a terminal disease (with less than six months to live) and voluntarily express orally in writing his or her wish to die; (2) the person’s decision must be an informed one regarding his or her prognosis and the alternatives to assisted death; (3) after the patient’s initial request he or she must wait 15 days before receiving a prescription for the death-causing medication, and at that time the physician will offer the patient an opportunity to rescind the request. Oregon keeps detailed records of the patients who avail themselves of the “Death with Dignity Act”, and an annual report notes the following:
As of January 22, 2014, prescriptions for lethal medications were written for 122 people during 2013 under the provisions of the DWDA, compared to 116 during 2012. . . Since the law was passed in 1997, a total of 1,173 people have had DWDA prescriptions written and 752 patients have died from ingesting medications prescribed under the DWDA. [“Oregon’s Death with Dignity Act,” 2013]
Most patients were well-educated, insured, and enrolled in a hospice program. Among their end-of-life concerns, most indicated loss of autonomy, loss of ability to engage in enjoyable activities, and loss of dignity. About half also indicated concerns about losing control of bodily functions, and burden on family, and about a quarter noted inadequacy of pain control.
The U.S. Supreme Court addressed the issue of assisted death in two important cases. First, in Vacco v. Quill (1997), a group of physicians in New York argued that assisted death should be legally permitted throughout the country. It is essentially the same as withholding life-saving treatment, they maintained, which is already legal in all states. The central issue was whether assisted death was different enough from withholding life-sustaining treatment (i.e., passive euthanasia) to justify different laws. The physicians maintained that they were sufficiently similar, and, thus, current bans on assisted death were arbitrarily discriminatory. The Supreme Court disagreed and argued that the two procedures are distinct in two important ways. First, the causes of death are distinct from each other: “when a patient refuses life sustaining medical treatment, he dies from an underlying fatal disease or pathology; but if a patient ingests lethal medication prescribed by a physician, he is killed by that medication.” Second, the physician’s intentions differ in the two procedures: when withholding life sustaining treatment, the intention is “to cease doing useless and futile or degrading things to the patient,” but with assisted death, the intention is to end the patient’s life. Thus, there are no grounds for legalizing assisted death nationwide based on any supposed similarities with passive euthanasia.
In the second case, Washington v. Glucksberg (1997), a different group of physicians argued that the ban on assisted death in the state of Washington violated a patient’s Constitutionally protected liberty rights. The Supreme Court concluded that the Constitution’s conception of liberty does not include the right to assisted death. First, they argued, there is a long history of prohibiting assisted death: “The history of the law's treatment of assisted suicide in this country has been and continues to be one of the rejection of nearly all efforts to permit it.” Further, they argued, individual states have legitimate interests in preserving human life and “protecting the integrity and ethics of the medical profession,” which assisted death threatens. Finally, states have an interest in “protecting vulnerable groups—including the poor, the elderly, and disabled persons—from abuse, neglect, and mistakes.” The upshot of both of these cases is that individual states can legalize assisted death within their own borders if they so choose, just as Oregon did. However, the Constitution does not require that states do this.
Just as Oregon has become a test case for assisted death, the country of the Netherlands is being closely scrutinized for its practice of legalized active euthanasia. Famous for its liberal social policies, such as legalized prostitution and drug use, the Dutch have turned a blind eye towards euthanasia since 1973, and finally legalized it in 2002. Like Oregon’s “Death with Dignity Act,” Dutch laws also have a checklist of requirements that must be fulfilled before physicians can directly administer a lethal dose of a drug to their patients. The Dutch government has issued reports on the practice of euthanasia in their country, which indicate that some abuses have taken place. Most notably, some patients were euthanized or assisted in death when their suffering was only emotional, but not physical. Critics of active euthanasia in the U.S. have seen this as a warning for what might occur with us if we follow Dutch policies. While the Dutch are unique by allowing active euthanasia, a handful of European countries permit assisted death. Belgium is one such country, and their active euthanasia laws are more lenient than those of the Netherlands. In one case, two twin brothers of 45 years old, who were born deaf, were progressively becoming blind, and they opted to be euthanized to avoid living in a condition of being both deaf and blind. In this case, while their decision was voluntary, they were not terminally ill, and their pain was emotional, not physical. Of the European countries that have legalized active euthanasia, Switzerland is the only one that allows outsiders to participate in the program, and this has led to a phenomenon in that country called “suicide tourism”. That is, people in end-of-life situations travel to that country specifically to have a physician there assist them in suicide.
A major legal issue related to end-of-life situations concerns who should decide the fate of patients once they become incompetent to express their preferences. Suppose, for example, that Bob fell into a coma and was put on life support and feeding tubes. There would be no realistic hope that he would recover from the coma, and it would be just a matter of a few months before he died from his stomach cancer anyway. In this situation passive euthanasia might be a reasonable option, but Bob himself would not be in a position to voice his preference about discontinuing his treatment, in essence, “pulling the plug” on the life-sustaining machines. Who should speak on Bob’s behalf?
First, his family members would have a say since they have the most at stake. Nevertheless, they should probably not be the sole determiners since they are too close to the situation. Their judgment to discontinue treatment might be clouded by mounting medical costs and other demands on the family. On the other hand, their judgment to continue treatment might be clouded by an unrealistic hope that Bob will miraculously recover. Bob’s physician and hospital would also have input, but here too their judgments might be clouded by their own concerns, such as the desire to accelerate Bob’s death to free up hospital beds, or, alternatively, the desire to provide Bob with every possible treatment as a means of avoiding a malpractice law suit. When family members and hospitals cannot agree, sometimes a judge must intervene on behalf of the family or hospital and order a particular course of action, such as removing life support. The case of Terri Schiavo is a dramatic example of this. After being in a persistent vegetative state for eight years, her husband obtained a court order to remove her feeding tube. Terri’s parents insisted that she was conscious, and, with the help of sympathetic advocacy groups and politicians, intervened to block the court order. After seven years of legal wrangling, the order was finally carried out and Terri died in 2007.
The issue of “who decides” is especially pertinent in cases of infants with deformities so serious that they have no reasonable hope of having a normal pain-free life. Anencephalic infants, for example, are missing a major portion of their brain, and are often born blind, deaf and unconscious. Decisions about withholding treatment, and thus allowing them to die, typically rest on the quality of life that the infant can be expected to experience. The more dismal the quality of life, the greater the case for withholding treatment. With some defects, though, it is difficult to presume in advance what the overall quality of life would be for the infant. Children with Downs syndrome, for example, vary greatly in their cognitive abilities, from being in a nearly vegetative state to being close to normal.
One way of remedying the situation of “who decides” is with a living will, also called an advance directive. This is a document that I might fill out while I am still mentally competent and indicates my preferences regarding the withholding of medical treatment to hasten my death. The following example was created by a hospice organization called Caring Connections, which prepares easy to read living wills for each of the U.S. 50 States, based on their own unique state laws.
I, John Doe, hereby give these advance instructions on how I want to be treated by my doctors and other health care providers when I can no longer make those treatment decisions myself.
Agent: I want the following person to make health care decisions for me: [space provided for name, relation, and contact information].
Alternate Agent: If the person named above is unable or unwilling to make health care decisions for me, I appoint as alternate: [space provided for name, relation, and contact information]
Quality of Life: I want my doctors to help me maintain an acceptable quality of life including adequate pain management. A quality of life that is unacceptable to me means when I have any of the following conditions (you can check as many of these items as you want):
Permanent Unconscious Condition: I become totally unaware of people or surroundings with little chance of ever waking up from the coma.
Permanent Confusion: I become unable to remember, understand or make decisions. I do not recognize loved ones or cannot have a clear conversation with them.
Dependent in all Activities of Daily Living: I am no longer able to talk clearly or move by myself. I depend on others for feeding, bathing, dressing and walking. Rehabilitation or any other restorative treatment will not help.
End-Stage Illnesses: I have an illness that has reached its final stages in spite of full treatment. Examples: Widespread cancer that does not respond anymore to treatment; chronic and/or damaged heart and lungs, where oxygen needed most of the time and activities are limited due to the feeling of suffocation.
Treatment: If my quality of life becomes unacceptable to me and my condition is irreversible (that is, it will not improve), I direct that medically appropriate treatment be provided as follows. Checking “yes” means I WANT the treatment. Checking “no” means I DO NOT want the treatment.
Yes/No. CPR (Cardiopulmonary Resuscitation): To make the heart beat again and restore breathing after it has stopped. Usually this involves electric shock, chest compressions, and breathing assistance.
Yes/No. Life Support / Other Artificial Support: Continuous use of breathing machine, IV fluids, medications, and other equipment that helps the lungs, heart, kidneys and other organs to continue to work.
Yes/No. Treatment of New Conditions: Use of surgery, blood transfusions, or antibiotics that will deal with a new condition but will not help the main illness.
Yes/No. Tube feeding/IV fluids: Use of tubes to deliver food and water to patient’s stomach or use of IV fluids into a vein which would include artificially delivered nutrition and hydration.
Other instructions, such as burial arrangements, hospice care, etc.:
[space provided for instructions]
Organ donation (optional): Upon my death, I wish to make the following anatomical gift (please mark one):
Any organ/tissue My entire body Only the following organs/tissues: [space provided for instructions]
[signatures and notarization]
The above living will is an exceptionally detailed one, which in many states is a necessity rather than a luxury. A Supreme Court ruling Cruzan v. Director, Missouri Department of Health (1990), established that individual states are within their rights to require that patients have clearly articulated living wills before life-sustaining treatment can be withheld. A patient’s mere verbal statement to a family member would not be sufficient. The justification for such strict standards is that we unfortunately cannot assume that family members will always act to protect the patient, and, thus, “A State is entitled to guard against potential abuses in such situations.”
The Hospice and Palliative Care Alternative
Hospice programs are the least morally problematic way of dealing with end-of-life situations, more so than physician assisted death and euthanasia. The aim of hospice programs is to provide a caring environment that meets the physical and emotional needs of terminally ill people as they live out their final days. Hospice programs are associated with a type of medical treatment known as palliative care, which seeks to reduce the severity of a disease’s symptoms, rather than curing the disease itself. This includes reducing the suffering of dying patients, typically through pain medication, once medical treatments such as chemotherapy are deemed ineffective. Hospice programs do not provide assisted death or active euthanasia, but instead focus on improving dying patients’ quality of life during their final days, often within the patient’s own home.
Ira R. Byock, a physician and advocate of hospice programs, argues that health care facilities today are not equipped to compassionately deal with the ever-growing number of terminally ill people. Pain medication is inadequate, patients’ preferences are not honored, and families often lose life savings to cover medical costs. Hospice programs, he argues, are an important answer to the problem, but they are plagued by intrusive government oversight which has the effect of discouraging people from using them. Despite decades of earnest efforts to improve end-of-life care, he argues, the crisis still persists, and "the legalizing of assisted suicide represents acquiescence to failed social policies, clinical practices and woeful deficiencies in personal care and social support." The expression “Death with Dignity” as used in assisted death advocacy, conveys the idea that for elderly or ill people to remain dignified, "they need to die before becoming senile or physically dependent." Byock believes better hospice and palliative care programs will reassert “basic human values and the right of each person we serve to feel wanted, worthy and dignified through the very end of life.” ("We Must and Can do Better," Health Progress, 2014).
COMMON ARGUMENTS PRO AND CONTRA
The Conservative Position
The conservative stance regarding end-of-life situations is that all active measures to cause death are wrong and should not be legalized, including suicide, assisted death and active euthanasia. Some more moderate or passive measures are permissible, though, when it is a matter of letting nature take its course. The main argument against active measures in end-of-life situations are as follows; for simplicity they will focus specifically on active euthanasia, but apply as well to suicide and assisted death.
1. The wrongness of intentional killing: active Euthanasia is wrong because it is deliberate killing, and societies throughout history have condemned killing others intentionally. A criticism of this argument is that there are many exceptions to the prohibition against killing, particularly in cases of self-defense, war and capital punishment. There are good reasons to recognize active euthanasia as another exception.
2. Slippery slope: euthanasia will lead to abuses, and ultimately result in actively euthanizing people against their wills. While in some situations it may be tempting to put someone out of his or her misery through active euthanasia, society will get accustomed to the idea of killing people to solve problems. Eventually euthanasia will be permitted in non-end-of-life situations, that is, where a person is not terminally ill, or in intense pain, or voluntarily requests it. Those most susceptible to euthanasia abuses will be the most helpless and vulnerable members of society. A criticism of this argument is that, as with any public policy, abuses with euthanasia can be reduced by enacting strict guidelines. At minimum, such guidelines would require that the above three end-of-life conditions be met.
3. Possible recovery: Euthanasia is wrong because we cannot tell for certain if a person's condition is really hopeless. There is always the possibility of some recovery, such as through a spontaneous remission or a new cure, or even a mistaken diagnosis. While this may be infrequent, it is not worth risking the lives of those who might be lucky enough to recover. A criticism of this argument is that it wouldn’t rule out situations in which the patient’s prognosis has been checked and rechecked and all available options have been reconsidered. Again, a strict enough set of guidelines could virtually eliminate cases of possible recovery.
4. No assurance of voluntariness: even if patients appear to authorize euthanasia, we cannot be sure that their consent is truly voluntary. They might not be in the proper state of mind to fully understand the options. Worse yet, they might be influenced by the preferences of family members who want to be free from the expense and burden of continued treatment. A criticism of this argument is that in many cases we can be sure of voluntary consent, particularly when patients make advance arrangements and repeated requests. Again, strict guidelines can reduce this possibility.
The Liberal Position
The liberal view regarding end-of-life situations is that individuals should be morally and legally permitted to decide whether to terminate their lives by either active or passive means. Here are the principle arguments for active euthanasia, which, again, also apply to suicide and assisted death.
1. Exercising Autonomy: people have a right to control their lives and choose their own means of dying. The idea of autonomy, which literally means self-rule, is a foundational component of a free society. So long as my actions don’t harm others, I should be free to direct my life as I so choose, and this freedom extends to end-of-life situations. A criticism of this argument is that, while autonomy is an important moral ideal, no one has full autonomy. Our actions are always restricted by competing interests of society. Suppose, for example, that our society lacks the ability to construct a safe active euthanasia policy that protects the interests of those who are most vulnerable to abuse. In such a case, society’s interests in protecting vulnerable people might outweigh the autonomy of those who desire active euthanasia.
2. Dying with Dignity: people have a right to conduct their lives with dignity and, when possible, to choose a dignifying way of dying. Like autonomy, the idea of human dignity is a foundational value of society. We should not be forced to endure degrading and humiliating situations in any component of our lives, and this includes the manner in which we die. End-of-life situations can be especially degrading when patients lose control of their bodily functions and their ability to cope with excruciating pain. A criticism of this argument is that, while dignity is an important ideal, there are limits to what we can expect when claiming a right to dignity. Our jobs, for example, will always involve some indignity, as anyone who works on an assembly line or in customer service knows well. The best we can hope for is to reduce indignities as much as our circumstances allow. In end-of-life situations, efforts should be made to reduce indignities for patients, but this by itself does not mean that patients can demand death through active euthanasia.
3. Showing Mercy: people in end-of-life situations are typically in great pain, and our obligation to be merciful and relieve suffering requires us to end their suffering through death if necessary. We routinely put animals out of their misery as an act of mercy and, in end-of-life situations, our obligation to relieve suffering demands that we do the same for humans. A criticism of this argument is that our obligation to relieve suffering is only one of many competing moral values that we have. For example, our moral tradition also acknowledges the virtue of fortitude, that is, the ability to endure difficult situations, the virtue to courageously face fear, and the obligation of self-preservation; these values may be contrary to active euthanasia. The obligation to relieve suffering should undoubtedly be shown towards dying patients, as is done in hospice programs, but showing mercy does not necessarily mean that we should actively put someone to death.
4. The Golden Rule: active euthanasia is supported by the Golden Rule. That is, I should do to others as I would want done to me. If I was in an end-of-life situation, I would want someone to kill me. Thus, treating others the same way, I should permit active euthanasia for others who are in end-of-life situations. A criticism of this argument is that the Golden Rule does not apply to all of our desires, particularly desperate ones. I may desperately want you to give me a million dollars, or a heroin fix, or an army of slaves to do my bidding. However, this does not mean that I should reciprocate by giving you these things when you desperately desire them. The Golden Rule does suggest that I must give desperate people help and show them kindness, since that is what I would want, but it does not hold me hostage to their specific requests.
A Middle Ground
On both sides of the euthanasia debate, there is sympathy for people in end-of-life situations, and a shared conviction that artificially prolonging the lives of such people is not good. Hospice programs are widely available, and passive euthanasia policies are becoming more generous. Thus, there is already much middle ground on this issue, perhaps more so than with other controversial moral issues. The critical question, though, is how we should deal with the more aggressive measures of assisted death and active euthanasia. How far should the U.S. go? As a whole, the U.S. is more conservative than the Netherlands, and it is unlikely that Dutch policies regarding active euthanasia will be duplicated in the U.S. any time soon. Further, worries about potential abuses of legalized active euthanasia are at least somewhat justifiable. If the U.S. is to move in a more liberal direction, particularly with assisted death, which seems inevitable, it makes sense to first learn from the mistakes of places like the Netherlands.
READING 1: PHYSICIAN ASSISTED DEATH IN OREGON (Kathryn Tucker, from The Consequences of Legalized Assisted Suicide and Euthanasia, Senate Committee on Judiciary subcommittee hearing, 2006)
. . . More than eight years of experience in the state of Oregon has demonstrated that risks to patients are not realized when a carefully drafted law is in place. In light of the Oregon experience, even previously staunch opponents have recognized that continued opposition to such a law can only be based on personal moral or religious grounds. The State of Vermont recently concluded, after thorough review of the Oregon experience, that: “it is [quite] apparent from credible sources in and out of Oregon that the Death with Dignity Act has not had an adverse impact on end-of-life care and in all probability has enhanced the other options.”
Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania School of Medicine, after reviewing the Oregon data stated: “I was worried about people being pressured to do this. But this data confirms, for the seventh year, that the policy in Oregon is working. There is no evidence of abuse or coercion or misuse of the policy.”
The American Public Health Association, in an amicus brief filed in the Supreme Court of the United States recently, advised the Court:
Researchers have consistently found that experience in Oregon does not bear out concerns that physician-assistance 'would be disproportionately chosen by or forced on terminally ill patients who were poor, uneducated, uninsured, or fearful of the financial consequences of their illness.’
2. Overview of Oregon Law and Experience with Implementation
A. Passage and Challenges
The Oregon Death with Dignity Act (“Dignity Act”) was passed in 1994 through the initiative process. Opponents of the Dignity Act have worked since then to overturn this law. First they sought relief from the Federal Government, urging the Drug Enforcement Administration (“DEA”) to take action against Oregon physicians who acted in compliance with the law on the basis that such activity violates the Controlled Substances Act (“CSA”).
The DEA initially opined that its agents could revoke the registrations of physicians who assisted in hastening deaths under the Dignity Act. U.S. Attorney General Janet Reno, however, overruled this position, concluding that the CSA did not reach such conduct. Opponents then sought, in two successive sessions of Congress, to amend the CSA to expand its scope to reach the Dignity Act. Both efforts failed in the face of strong opposition from the medical community founded on the concern that the proposed measures would exacerbate physicians’ fears regarding the use of controlled substances in pain management.
A change in federal administration and philosophy led to a change in legal interpretation. The Bush Administration’s first Attorney General, John Ashcroft, issued a Directive on November 6, 2001 (the “Ashcroft Directive”), advising that the Department of Justice had concluded that prescribing controlled substances under the Dignity Act violated the CSA” .
The Ashcroft Directive was challenged in federal court by the state of Oregon, an Oregon physician and pharmacist, and a group of terminally ill Oregonians, who asserted that it violated the CSA, the Administrative Procedure Act and the U.S. Constitution. The federal district court, the Ninth Circuit Court of Appeals, and the United States Supreme Court all concluded that the Directive exceeded the authority granted under the CSA, and a permanent injunction was entered. The Supreme Court held that the Attorney General did not have the authority to effect a “radical shift” in the balance of state-federal power as it pertains to the regulation of the practice of medicine. The Court reaffirmed the traditional state-federal balance of power in regulating the practice of medicine, specifically upholding Oregon’s physician-assisted dying law as a legitimate regulation of medicine. By noting that General Ashcroft’s view of physician-assisted dying was but “one reasonable understanding of medical practice,” the Court made clear that Oregon’s view also is reasonable.
B. Implementation of the Oregon Law
The Dignity Act establishes tightly controlled procedures under which competent, terminally ill adults who are under the care of an attending physician may obtain a prescription for medication to allow them to control the time, place, and manner of their own impending death. The attending physician must determine, among other things, that the patient is mentally competent, an Oregon resident, and confirm their diagnosis and prognosis. To qualify as “terminally ill” a person must have “an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months.”
The attending physician must also inform persons requesting such medication of their diagnosis and prognosis, the risks and probable results of taking the medication, and alternatives to taking their own lives, including, but not limited to, hospice care and pain relief. A consulting physician must confirm the attending physician’s medical opinion.
Once a request from a qualifying patient has been properly documented and witnessed, and all waiting periods have expired, the attending physician may prescribe, but not administer, medication to enable the patient to end his or her life in a humane and dignified manner. The Dignity Act immunizes physicians and pharmacists who act in compliance with its comprehensive procedures from civil or criminal sanctions, and any professional disciplinary actions based on that conduct.
The Dignity Act also requires healthcare providers to file reports with the State documenting their actions; thus, Oregon’s experience with legal physician-assisted dying has been extensively documented and studied. To date, the Oregon Health Division and/or the Oregon Department of Human Service Office of Disease Prevention and Epidemiology have issued eight annual reports that present and evaluate the state’s experience with the Dignity Act. Related reports and articles have also been published in leading medical journals. These reports constitute the only actual source of reliable data regarding the experience of legal, regulated physician-assisted dying in America.
These reports have shown the dire predictions of those initially opposed to the Dignity Act to be baseless. The data clearly demonstrate that the option of physician-assisted dying has not been unwillingly forced upon those who are poor, uneducated, uninsured or otherwise disadvantaged. The Reports show the following:
• use of physician-assisted dying is strongly associated with a higher level of education; those with a baccalaureate degree or higher were 7.6 times more likely than those without a high school diploma to choose physician-assisted dying.
• ninety-nine percent of patients opting for physician-assisted dying during the Dignity Act’s first six years had some form of health insurance and eighty-six percent were enrolled in hospice care.
• use of physician-assisted dying is limited. During the first six years in which physician-assisted dying was a legal option, a total of only 171 Oregonians chose it. The number of terminally ill adults choosing this option in 2003 represented only one-seventh of one percent—i.e., 0.0014 percent—of Oregonians who died that year.
Indeed, rather than posing a risk to patients or the medical profession, the Dignity Act has galvanized significant improvements in the care of the dying in Oregon. These include:
• greatly increased enrollment by Oregon physicians in Continuing Education courses to improve their knowledge of the use of pain medications for the terminally ill, improving their ability to recognize depression and other psychiatric disorders, and more frequently referring their patients to hospice programs.
In sum, the available data demonstrate that making the option of assisted dying available, far from posing any hazard to patients or the practice of medicine, has galvanized improvements in end of life care, benefiting all terminally ill Oregonians.
The experience in Oregon reveals much about why dying patients choose to hasten impending death. In nearly all cases, multiple concerns contributed to the request. The patient’s most frequently cited concerns include a decreasing ability to participate in activities that made life enjoyable, the loss of autonomy, and the loss of dignity.
A core argument made in opposition to legalizing the option of assisted dying contends that what terminally ill patients really need is good pain management and palliative care, not hastened death. These opponents contend that motivation to improve pain management will be undermined if assisted dying is an available option. Yet, as noted above, the Oregon experience has shown that legalization of assisted dying has galvanized efforts to improve pain management, and hospice enrollment in Oregon is stunningly high among patients who choose to make use of the Dignity Act. Terminally ill Oregonians do not choose assisted dying because they have untreated pain, quite the contrary; Oregonians have access to good pain and symptom management. Only the relatively few patients who find that the cumulative burden of their terminal illness is intolerable, and who persist in a desire to hasten impending death, go on to utilize the Dignity Act.
3. Overview of Support for the Option of Physician Aid in Dying
Though Oregon is the only state to have yet legalized the option of physician aid in dying, support for the option is widespread nationwide.
• Harris poll, January 2002, found that sixty-five percent of respondents support legalization of the right to physician-assisted dying and sixty-one percent favored implementation of a version of the Dignity Act in their own state.
• Another group of studies found that between sixty-three and ninety percent of people with a terminal illness support a right to physician-assisted dying and would like to have the option available to them.
• In California, surveys in March 2006 and March 2005 found that 70% of California residents support the idea that “incurably ill patients have the right to ask for and get life-ending medication.” An assisted dying measure introduced in the California State Legislature in 2005 has garnered strong support.
• Support is found among persons of diverse religious faiths.
Support is also strong among physicians:
• A national survey conducted in March 2005 found that 57% of physicians believe it is ethical for a physician to assist a competent, dying patient hasten death.
• A 2001 survey published by the Journal of the American Medical Association found that fifty-one percent of responding physicians in Oregon supported the Dignity Act and legalization of physician-assisted dying.
• A nationwide survey published in 2001 in the Journal of General Internal Medicine found that forty-five percent of responding physicians believed that physician-assisted suicide should be legal, whereas only thirty-four percent expressed views to the contrary.
• Mental health professionals recognize that dying patients can choose aid in dying and be fully mentally competent.
• A significant number of medical associations have decided to embrace a position of “studied neutrality” on the question of legalizing physician-assisted dying, recognizing the division within the medical community on the question.
4. The Back Alley, Covert Practice