QUESTIONS AND ANSWERS:

ASSISTED DYING

 

From Stephen Jamison, Final Acts of Love: Families, Friends, and Assisted Dying (Tarcher/Putnam 1996)

 

Is Assisted Dying the Same as Suicide?

Is Assisting in a Suicide the Same as Killing?

Is Assisted Suicide Rational?

Doesn’t Effective Pain Control Eliminate the Need for Physician-Assisted Dying?

Is Assisted Suicide a Sin?

Would Legalized Assisted Dying Be Better Than the Current Practice?

Would Legalized Physician-Assisted Suicide Damage the Physician-Patient Relationship?

Would Legalized Aid in Dying Undermine Public Trust in Physicians?

Wouldn’t Legalized Aid in Dying Lead to Abuse?

What is the Difference Between Assisted Dying and Euthanasia?

How Should Legal Assisted Dying for the Terminally Ill be Implemented?

How Might the Rights of Patients to an Assisted Death Be Ensured?

How Would Disadvantaged and Medically Underserved Be Protected?

What About Surrogate Decision Making?

What’s the Background on the Slippery Slope Argument?

Will Legalization Result in a Duty By Physicians to Assist in a Death?

Then Won’t This Lead to Suicide Centers?

How Is Assisted Death Compatible With Principles of Biomedical Ethics?

 

Is Assisted Dying the Same as Suicide?

Suicide ends a life that could have continued, and implies irrationality that is rooted in an identifiable mental condition which may be treatable with proper therapy and medications. By contrast, an assisted death ends the life of patient whose hope for continued living and cure is gone and is faced with suffering until death.

Is Assisting in a Suicide the Same as Killing?

Killing takes a human life against the will and without the consent of a person who wants to continue living, and has the primary intention of doing harm. Assisted dying, by contrast, should always be a compassionate act voluntarily requested by the patient who is destined to die and wants to die to relieve his or her suffering; it should be carried out only after open dialogue with one’s physician and significant others, assessment of all possible options, opportunities for counseling, and serious reflection.

Is an Assisted Death Rational?

Some have argued that all self-intended death, regardless of circumstances, is irrational, and this includes requests for assisted dying in the case of a terminal illness. Opponents have argued that studies of suicides, even those among the terminally ill, find that nearly all were suffering at the time from a definable psychiatric disorder. To begin with, it is easy to retrospectively interpret a now deceased patient’s prior statements of "hopelessness" as an indicator of depression, forgetting that terminal illness indeed is "hopeless" by definition. In addition, there are other serious problems with this rationality argument, not the least of which are methodological. Nearly all assisted deaths are never documented as suicides, but as natural deaths. Therefore, discovered suicides and assisted deaths are two very distinct populations. Simply, suicidologists never see rational suicide because those who are rational never see them. Moreover, acts of suicide and assisted dying are not comparable, because in the latter case death shortens the suffering of a life that could not continue for much longer under any circumstances.

Part of the problem here is our cultural attitude toward death that sees that life as the only rational choice. This suggests an approach to death that lacks both a spiritual and natural orientation, is rooted in fear, and fails to see that death can sometimes be welcomed as an inevitability. Although it is likely that man y requests for assisted deaths -- and some assisted deaths that are completed -- may be partially motivated by treatable depression or other causes. Unfotunately, these will continue undiagnosed without options until a system of guidelines are in place that enable the decision-making process to be opened up to scrutiny, consulting opinions, and opportunities for therapeutic counseling.

Does Effective Pain Control Eliminate the Need for Physician-Assisted Dying?

Physical pain is only one of many conditions that lead patients to make the decision to die. Physical suffering and quality of life involve several factors beyond pain that can rationally influence this decision. Moreover, while most terminal metastatic cancer pain can be controlled, there is still a substantial amount of pain that cannot be controlled without pharmacologically-induced sleep that approximates death.

Is Assisted Suicide a Sin?

This is a theological question that is answered in varying ways by different religions and religious denominations. Some equate requesting and receiving aid-in-dying, regardless of the presence of intolerable suffering and terminal illness, as an act of suicide; they also equate providing assistance with killing. Others define requesting and providing assistance as justifiable and merciful.

Suicide is not prohibited by either the Old or the New Testament, and religious views on it are not static but have changed over time. Current Catholic Church theology, for example, argues that suicide is not a sin, but an irrational act for which the victim is not accountable. This is a modern change, however, that reverses a position held for more than fourteen hundred years. The first Christian declaration against it was made by Augustine in his City of God in the early 5th century, and suicide was officially declared a sin at the Council of Arles in 452 A.D., which reaffirmed Roman slave clauses prohibiting suicide by servants. Some writers suggest that this change was prompted by the sheer volume of deliberate acts of martyrdom in the early church, which amounted to about one hundred thousand deaths. Also common were deaths resulting from ascetic self-penance. Martyrdom was seen as erasing all sin and ensuring a quick passage to heaven, and suicide following baptism was seen as a logical way to avoid sin. There are numerous reports, moreover, of mobs of early Christians demanding death sentences at the hands of the Romans, and this practice of "assisted suicide" was so extensive that Clement, bishop of Alexandria, condemned deliberate martyrdom, not because he saw suicide as a sin, but because the martyr tempted the pagan to commit the act of murder.

Would Legalized Assisted Dying Be Better Than the Current Practice?

The drawbacks of the current practice in most areas of the world are obvious. Patients who are suffering are at the mercy of individual physicians who may not be willing to take risks, and these physicians either refuse to help or respond in professionally "safe" ways by providing commonly prescribed -- but less-than-adequate -- means to die. In either case, the often unintended result is unwanted involvement by significant others who, without access to proper drugs are forced to go to great extremes to ensure a loved one’s last request to die. This is usually done without counseling, and without full assessment and discussion of alternatives, and can seriously magnify the loss while increasing the legal risks. Assisted dying in its current form doesn’t provide the safeguards that legislation could require. To legally protect themselves, physicians often avoid talking in-depth with patients and their significant others about the decision to die, and may fail to seek consulting medical opinions or request evaluations by mental health professionals. The current system, therefore, does nothing to ensure that all other options are explored, that those requesting this action have the opportunity to receive counseling, that those who are assisted qualify for it, and those most in need have the option of receiving it.

Would Legalized Aid in Dying Damage the Physician-Patient Relationship?

Evidence suggests that such relationships are not always positive anyway. Opponents of legal assisted dying point to the potential damage to the physician-patient relationship to explain away public demand for legal change, and argue that the answer to the problem is more compassionate care, not assisted death. They further argue that some physicians may find it easier to help patients die than to respond to their patients' therapeutic needs, pointing to research that shows that physicians are "seldom comfortable, intimate, and competent in the management of terminal suffering," and that they frequently fail to respond to the needs of dying patients. Instead, they suggest that physicians can feel an antipathy toward the dying, and that this may arise from their own anxieties about death, ideas on quality of life, and feelings of failure about their inability to cure these patients. As a result, physicians may emotionally withdraw from the dying and both minimize and under-treat their patients' pain.

If this is true, then this relationship cannot get much worse with legal assisted dying unless it were quickly and less-than-thoughtfully provided and merely seen as another technological option available for use in an already faulty physician-patient relationship. This relationship, however, can only improve if assisted death is seen as an extraordinary act that requires extraordinary dialogue, and is legalized with guidelines, safeguards, and a model of clinical practice that opens up this currently private relationship to professional input and scrutiny. It must increase -- rather than decrease -- the accountability of physicians for: (1) meeting the needs of dying patients; (2) communicating with patients and their significant others about their end-of-life concerns; and (3) addressing issues of relentless pain, suffering, and possible depression. In this way assisted dying doesn’t have to conflict with compassionate care, but can help ensure it by shifting current emphasis to a model that recognizes both the inevitability of death and the necessity to provide comfort for their dying patients -- a model of compassionate medicine that already exists within the hospice concept. With this model in place, a patient’s request for assisted death could require physicians to responsibly face the suffering of patients, and by so doing help to humanize the dying process, teaching physicians that death -- regardless of how it comes -- is not failure if it arrives at the end of an intensified process of assessment, discussion, and decision-making; it can become part of a new model of care that redefines the concept of healing to place greater emphasis on the emotional, relational, and spiritual aspects of being, than on the physical.

Would Legalized Aid in Dying Undermine Public Trust in Physicians?

Some opponents believe that physician aid-in-dying would undermine public trust in medicine’s dedication to preserving the life and health of patients, and that physicians may be more reluctant to invest their energy and time serving patients whom they believe would benefit more from a quick and easy death. In rebuttal, I would argue that one of the reasons behind the public demand for legal change in assisted dying is patients’ desire for more control and the existing lack of trust in the ability to physicians to relieve their suffering. If assisted dying were legally available as an extraordinary option under strict rules, and patients knew that in the case of suffering their issues of pain and dignity would be addressed, then public fear of the dying process might lessen and trust in physicians might consequently increase.

Wouldn’t Legalized Assisted Dying Lead to Abuse?

Legal change with strict controls could reduce the current problems of inappropriate aid-in-dying by physicians and significant others, and ensure quality of care for the dying, by opening up the decision process, requiring documentation and supporting evidence in the case of each death, and including strong clinical guidelines and criminal penalties for any violation.

What is the Difference Between Assisted Dying and Euthanasia?

Assisted death is a model that includes both what has been called physician-assisted "suicide" and voluntary active euthanasia. It suggests a difference in the degree of involvement and behavior. Physician-assisted suicide entails making lethal means available to the patient to be used at a time of the patient’s own choosing. By contrast, voluntary active euthanasia entails the physician taking an active role in carrying out the patient’s request, and usually involves intravenous delivery of a lethal substance. Physician-assisted suicide is seen to be far easier emotionally for the physician than euthanasia as he or she does not have to directly cause a death; he or she merely supplies the means for the patient’s personal use. My own study of non-physician-assisted death bears out this claim; those less directly involved have fewer difficulties overall accepting their actions. Supporters of physician-assisted suicide say that it carries the added benefit of allowing the patient to determine the time of death and provides the opportunity for the patient to change his or her mind up to the last moment. I would argue that this possibility equally exists in cases of voluntary active euthanasia, and may even enable a physician to discuss topics of motives and options with the patient one last time. The use of self-administered oral lethal drugs, while it provides a certain freedom of timing, does carry the risk of error, however, and needs to be completed while the patient is still well enough to swallow, hold down substances, and metabolically absorb these drugs. Fear of this risk is widespread among patients and, because of this, some may act earlier than necessary to avoid it. Euthanasia contains a much smaller chance for mistakes and may be necessary in cases where a patient is too sick for self-administration, or no longer capable of swallowing, holding down food, or absorbing oral medication. If a patient knows that a physician can always intervene, the act of assisted death may be permanently postponed.

How Should Legal Assisted Dying for the Terminally Ill be Implemented?

I envision several changes. First, I would propose that strict guidelines be implemented that parallel those I’ve specified in Chapter Seven. Briefly, these would establish criteria for determining which patients should qualify to receive assistance along with safeguards and guidelines for clinical practice to protect both patients and health care providers.

Second, I would recommend changes be made in existing homicide statutes to include provisions with criminal penalties for both assisted death and mercy killing. Laws covering assisted death would be enforceable if the statutory guidelines and safeguards were bypassed. Similarly, mercy killing statutes could cover cases of non-voluntary active euthanasia, where issues of patient competence were involved or where someone acts on his or her own without a final request in carrying out a patient’s earlier expressed desire to die. In cases where motivation is proven to be altruistic and disinterested, penalties might well be nominal or nonexistent, but these would need to be determined by a court of law and the burden of proof must reside in the defense.

Third, I would call for creation of bioethics committees through regional hospitals and local medical societies that would be charged with overseeing cases of assisted death by advising physicians on difficult cases (in terms of clinical procedures, guidelines, standards for care, and patient qualification), receiving in-depth reports from physicians on each case, assessing these reports, and passing on their findings to state medical licensing boards or other governing bodies for data collection purposes. This regional bioethics committee might do well to include a "law enforcement" representative from the local medical examiner’s office to ensure compliance with the law, and others, such as representatives from area hospices, to ensure a balanced perspective. Each case, however, would be handled confidentially to protect patients, significant others, and physicians from the kind of violence and emotional abuse that has dominated recent abortion battles. These regional committees could even oversee continuing medical education efforts locally on issues involving pain control and end-of-life care.

Fourth, I would argue that patients requesting help be interviewed about their decision by someone other than their primary care physician to discuss motives, ensure that coercion has not occurred, and ascertain that such a decision did not originate with any suggestions from their physicians -- an act that should be considered a criminal offense. In the case of patients who are hospitalized, this investigative function could be carried out by the hospital social worker, a patients’ rights advocate, or hospital ombudsman. Patients in the community might be interviewed by a hospice social worker, patient rights advocate, or a psychiatric social worker or someone similarly charged with performing mental health assessments.

Finally, I would like to see a team approach be implemented in proposed cases of assisted death. As in the hospice model, physicians would not forced to act alone, but would have other professionals such as nurses, counselors, and social workers available for input. In this way, assisted death would be transformed from being the private act that it is currently to one that where the full circumstances of a patient’s situation is brought into the equation. In fact, I would argue that hospice itself, with its physical-psycho-social emphasis and the opportunities that it provides for emotional counseling and respite care, make it a natural entity to provide assisted death as an extraordinary option for those under its care.

How Might the Rights of Patients to an Assisted Death Be Ensured?

Since both the request and provision of aid-in-dying must be voluntary, a list of physicians could be maintained by local patients’ rights groups, the patients’ rights advocate in the area, or even by hospital or hospice social workers. Beyond this, I foresee this role being taken over by non-profit organizations like Compassion in Dying, in Seattle, or local Hemlock Society chapters or similar organizations that could provide both counseling and referrals to physicians willing to work with patients who potentially qualify to receive aid. These groups would not provide aid-in-dying, but would ensure that patients could begin the qualifying process.

How Would Disadvantaged and Medically Underserved Be Protected?

I would argue that assisted death be considered as an extraordinary act, and that the involvement of hospital social workers, counselors, and even hospice could do much to eliminate this supposed threat. Provision should also be made to legally restrain physicians or anyone else from proposing it as an option to patients. While opponents claim that legalizing assisted death should not even be considered until we have universal health care, this denies the fact that: (1) many patients are currently suffering; (2) plans for universal coverage have been proposed without solution since the early 1970s; (3) both "passive" and active euthanasia in the form of termination of care and "double effect" are widespread without similar concern; and (4) assisted death is widely practiced without any present controls or guidelines. I would argue that this fear could be reduced if any legislation allowing for assisted death also require private and public insurers to guarantee payment for other possible options as well as for end-of-life counseling for the patient and significant others. In the absence of this possibility, other approaches might include tying legislation to public funding for community-based hospice programs or even the drastic act of prohibiting private or public insurers from paying any associated costs of assisted death except for counseling services.

Stepping back for a moment, however, the assumption here is that these populations, for economic reasons, would feel the psychological pressure to choose death over the high cost of end-of-life medical care. This economic argument hasn’t been borne out in studies of other behaviors, such as the relationship between income and either family size or abortion, and it most certainly hasn’t yet been shown to exist in end-of-life decision-making. It’s not as if people would be faced with only the choice of relentless suffering or assisted death. And it’s not as if economics is the only factor individuals and families take into consideration in making decisions. Nevertheless, rationing of health care, futility of care, and health care costs are issues that are only now being addressed, and the debate will continue for several years; and I envision that assisted death and termination of care will unavoidably be at the center of these issues.

What About Surrogate Decision Making?

At the present time I have serious problems with surrogate authority to make any termination of care or assisted death decisions for those no longer competent. In the absence of knowledge of prior intention, current laws in most states allow the withdrawal or withholding of treatment from such patients at the request of legal surrogates. This occurs even when patients fail to specify their desires in advance about such treatments. This implies a current willingness to "allow" patients to die in ways that are not voluntary. This can especially be seen in futility cases that involve infants with severe life-threatening abnormalities, which place hospitals -- even Catholic hospitals -- and physicians in conflict with surrogates desiring continued care for family members. I am troubled by the entire panorama of this practice, and believe that standards need to be established and that consistency in surrogacy decisions is necessary whether we’re talking about "only allowing"-- or actively helping -- a patient to die. To place assisted death in a special category in terms of surrogacy ignores the fact that both actions lead to the same result. I do not believe that surrogacy involving assisted death is the only issue or that it can be resolved without also taking a closer look at issues involved with "allowing to die," and until there also are guidelines for futility of care decisions.

One way out of this dilemma is to err on the side of caution, with assisted death legislation excluding the possibility for surrogate decisions -- without prior documented indication of desire -- until all end-of-life decisions involving surrogacy can be consistently resolved by a special commission. In all instances I believe that any of these surrogate decisions, regardless of prior documented indication of desire, need to be subject to automatic review by bioethics committees. All of this may seem a step backward given current practices in terms of "allowing to die" but, as I’ve said, perhaps these current practices need to be revisited. In this regard, although the Dutch have been criticized for their leniency about euthanasia some scholars argue that the Dutch are more upset by the practice of "allowing" patients to die and feel that it is we, not they, who are on the slippery slope. In fact, much of the opposition in the Netherlands to euthanasia is opposition to the practice of terminating care. Without lines being clearly drawn in all these matters, I believe indeed we are walking a dangerous road that ignores that the "right-to-die" is, after all, an idea rooted in the concept of individual choice, not in the choice of others.

What’s the Background on the Slippery Slope Argument?

Much of the opposition to assisted death is based on the fear that voluntary requests for aid-in-dying would soon move to these surrogate decisions and then to involuntary euthanasia of incompetent patients whom physicians or others felt no longer had any quality of life. As I described above, the surrogacy argument seems to bear some weight as court decisions from Quinlan to Cruzan have upheld the request of surrogates to withhold or withdraw life-sustaining treatments when these patients made their philosophical intentions known prior to loss of competence. This indeed is the basis of living will provisions that presently exist. In essence, the courts might eventually see no difference between "allowing to die" and easing suffering by providing death more quickly. In terms of moving to non-voluntary euthanasia, opponents of assisted death point to both the Netherlands and Nazi Germany as examples to be avoided. These arguments, however, ignore the facts. In the Netherlands qualified patients can request and receive either lethal prescriptions or direct euthanasia (lethal injections). Government studies have found that some 1,000 patients a year meet death in such an involuntary manner. What is lost in this argument is that the Dutch make no distinction between passive and active euthanasia, and that many of these "life terminating acts without explicit request" (LAWER) result from withholding or withdrawal life-sustaining treatment -- a practice that is widespread in America, and that many other deaths involved prior discussions between patients and physicians. These LAWER cases have come to public attention only because the Dutch have created a system that allows qualified patients to request and receive assistance, and requires physicians to report them. Also ignored is the fact that non-voluntary euthanasia is quite common in American hospitals but go unreported as they are often sheltered under the wider umbrella of "double effect," even though it’s often obvious to all involved that the intention of massive pain relief has indeed been to end life, not just pain. Furthermore, in my own research I uncovered instances of physicians also providing significant others with lethal medications to be used for one who was dying, but who was no longer competent due to AIDS dementia or end-of-life sedation in cancer cases. Although these are all anecdotal reports, they suggest that the slippery slope already exists. Legal controls can do much to make this slope explicit, and bring existing abuses to light.

In terms of Nazi Germany, what opponents seem to forget is that official programs for euthanasia were designed from above with the intention from the very beginning of gradually creating a system of genocide rooted in the concept of racial purity. This was never voluntary or based on freedom of choice. The true slippery slope in Nazi Germany was the loss of civil liberty and freedoms. The current call for assisted death legislation is! Restricting freedom of choice and enforcement of a public health model which protects individuals from harming themselves is far more dangerous than an approach which provides guarantees of broad freedoms to the individual.

Will Legalization Result in a Duty By Physicians to Assist in a Death?

Some ethicists have argued that what will begin as a right of patients to request aid-in-dying from their physicians under specified conditions will soon become a duty. I would counter this by saying that autonomy works for both patients and physicians, and that physicians should never be required to provide such assistance, just as they are not now required to perform other surgical procedures they are morally opposed to, such as abortions. The right to receive, and therefore to perform, abortions has not resulted in such a medical "duty." Very few physicians currently perform abortions, and special clinics and family planning centers have had to be established to fill this need without, I should add, the strict controls and counseling requirements that I’d recommend in cases of assisted death.

Then Won’t This Lead to Suicide Centers?

At first glance this would appear inevitable if most physicians refused to provide assistance to dying patients, and with the largest percentage of private hospitals being associated with the Catholic Church. Recent studies, however, show that up to 25 percent of physicians in some areas already admit having provided assistance, and the number may be much higher among practitioners treating cancer or AIDS. Further, these same studies have found as many as half of all physicians say they would be willing to provide aid-in-dying in certain cases if laws were changed. Given these numbers, I doubt there would be a shortage of physicians who’d be willing to help their patients die. Unless confidentiality was guaranteed, however, strict reporting requirements might substantially reduce this number, as not all physicians might be willing to practice under close legal and public scrutiny.

This should not be a problem, however, if at-home hospice programs, critical care units in hospitals, and skilled nursing facilities agreed to provide aid-in-dying as an extraordinary option when their own efforts at pain control and palliative care failed to relieve suffering. Unlike outpatient abortion clinics I can’t envision outpatient "death clinics" that would meet requirements for involvement by primary care physicians and bioethics committees. Instead, I’d suspect that the dying would prefer the current model of privacy in regard to the practice of assisted death: if possible, dying at home while surrounded by loving partners, family members, or friends.

Nevertheless, for those without significant others or opportunities for round-the-clock care, I would encourage expansion of residential hospices as well as creation of centers for life and death that together might serve as feasible alternatives to current convalescent nursing facilities. Linking all such facilities to hospice services could ensure a range of options, starting with compassionate care, palliative efforts, pain control, emotional support for family members, and including the possibility of assisted death. If opponents of assisted point are correct in suggesting that public interest in legalized assisted death is rooted in fear of nursing homes, then such centers, instead of ghettoizing the aged and the dying, could have the additional benefit of serving as a viable alternative to the current model of convalescent care. They could even bring together volunteers from the larger community and multiple age groups in a fellowship of learning and sharing for both the dying and the living.

Doesn’t Assisted Dying Violate Medical Tradition

The medical ethos is not a linear tradition that has been simply handed down from generation to generation. Medical practitioners have reinterpreted this ethos for themselves, and it also has been molded by each generation of physicians. Hippocrates, in his essay, The Arts, wrote that the physician was to "refuse to treat" those who are overwhelmed by their diseases, realizing that in such cases medicine is powerless. In ancient medicine and until the time of Bacon and Newton, the care of the dying and the hopelessly ill was not considered to be part of a physician’s obligation. Indeed, to do so was felt to be immoral. Similarly, physicians who believed a case was hopeless routinely suggested suicide, and often supplied the lethal drugs with which to accomplish it. The ethos of medicine has changed rapidly in the recent years as a result of court cases which have expanded patients’ rights to refuse or withhold treatment even though death may well be an inevitable result. No one would now argue for the forced treatment of patients against their will, except in cases where mental competence can be questioned or where parents oppose life-preserving interventions for children. The function of medicine is not only to sustain biological life but to relieve suffering. The question to be asked is whether a physician is causing more harm by favoring a slow agonizing death for a patient over one that is rapid and gentle. Allowing a patient to suffer when such suffering can only be alleviated by death, when the patient wants suffering to end whatever the cost, arguably is "doing harm."

How Is Assisted Death Compatible With Principles of Biomedical Ethics? The four principles of biomedical ethics include beneficence, nonmaleficence, autonomy, and justice. Beneficence can be understood as the opportunity for a patient to be released from suffering. Nonmaleficence, to do no harm, can be interpreted as doing less harm by not prolonging unnecessary suffering. Autonomy can be seen by respecting the rights, desires, individuality, and personhood of the patient, with final authority for all decisions resting with this person. And justice can reside in equality of care for all terminally ill with availability for both hospice care and aid-in-dying.

 

 

Why Have Medical Groups Opposed Previous Legislation?

The most recent citizens’ initiative in Oregon was not opposed by the state’s medical association, perhaps because it called for assisted death via prescriptions only and not euthanasia actively performed by physicians. By contrast, the American Medical Association, to which only about half of all American physicians belong, has fought over the years against any efforts that could place controls over medical practice or jeopardize the income or status of its members (Universal Health Insurance, the establishment of a public health service and syphilis clinics, mandatory innoculation against polio, etc.) or the myth of physicians as healers. This position will change when the right laws are authored that can preserve the image of physicians and protect them from any possibility of malpractice suits, or when these professional groups are forced to create their own model guidelines in response to court decisions or further successful initiatives by voters. This is inevitable given the public demand for change and the fact that more than half of physicians surveyed now want some form of legalized aid-in-dying for the terminally ill.