Illustrative image for Medical Aid in Dying

From Bioethics Briefings

Medical Aid-in-Dying

Highlights
  • Medical aid-in-dying (MAiD) refers to the practice of a physician providing a potentially lethal medication to a terminally ill, suffering patient at his or her request that the patient can take (or not) at a time of his or her own choosing to end his or her life. It has also been called physician-assisted suicide and physician aid-in-dying and patient administered hastened death. (In this briefing, we will use the term medical aid-in-dying.)
  • State-of-the-art palliative care should be the standard of care for treatment of suffering at the end of life. Medical-aid-in-dying should only be considered (if ever) as a last resort when such treatment has failed.
  • Most states prohibit MAiD, though there has been a recent flurry of legal activity. The practice was first legalized in Oregon in 1997, followed by Washington, Montana, Vermont, California, Colorado, Washington, D.C. , Hawaii, New Jersey, Maine, and New Mexico.
  • Two 1997 Supreme Court cases challenged the constitutionality of the prohibitions against MAiD: Washington v. Glucksberg and Quill v. Vacco. The Supreme Court found no constitutional right to MAiD, preferring that these issues be worked out in the “laboratory of the states.”
  • Empirical studies in the United States show an underground practice of MAiD that is not actively prosecuted as long as it is not openly discussed.
  • The American public and the medical profession both remain deeply divided on the question of whether to legalize MAiD.
  • Last resort alternatives to MAiD, including allowing patients to voluntarily stop eating and drinking and sedating patients to unconsciousness, have gained increasing acceptance to ease otherwise intractable end-of-life suffering.
  • Both MAiD and voluntary active euthanasia were openly permitted for over 30 years in the Netherlands and were legalized in 2002.

Framing the Issue

The question of whether severely ill suffering patients are entitled to a physician’s help to end their suffering by ending their lives has been debated since antiquity. The Hippocratic Oath suggested that this was outside of the physician’s professional responsibilities, but even in that time there was considerable disagreement. In the modern era, there is consistent evidence of a secret practice of medical aid-in-dying (MAiD) in western countries where it is prohibited. The medical profession and the law tend to look the other way as long as it does not become public (“Don’t ask, don’t tell.”). This secret practice was flaunted in the 1990s when Jack Kevorkian assisted in the deaths of approximately 150 patients. Although he lost his professional license in the process (he was a pathologist, not a clinician), he was not successfully prosecuted until he provided active euthanasia at a patient’s request and was subsequently jailed for over eight years.

In the United States, most jurisdictions have prohibited MAiD either with specific statutory provisions or judicial application of more general statutes. There have been attempts to change the law using several methods:

  • Federal legal challenges to the constitutionality of the prohibitions, including two Supreme Court cases heard together (Washington v. Glucksberg and Quill v. Vacco). Although the U.S. Supreme Court found no constitutionally-based right to MAiD, it suggested that this matter should be decided in the “laboratory of the states.”
  • State referenda: while several challenges to prohibitions on MAiD failed, Death with Dignity acts were enacted in Oregon in 1997 and in the state of Washington in 2008. Both laws have survived a variety of legal challenges.
    • Legislative action: Vermont (2013), California (2015), Colorado (2016), the District of Columbia (2017), Hawaii (2018), New Jersey (2019), Maine (2019), and New Mexico (2021) passed laws legalizing MAiD through standard legislative initiatives.
    • State constitutional challenges are working their way through several state court systems, but none has been successful in achieving legalization.

Some controversy remains about what to call the practice. Common understanding of the word suicide equates it with mental illness and irrational behavior, and the medical obligation would therefore be to prevent these acts if at all possible. Dying patients who see their lives being destroyed by illness sometimes come to view death as the only way to escape their suffering, and therefore view it as a means of self-preservation – the opposite of suicide. The states where it has become legalized now call it medical-aid-in dying.

The public remains deeply divided on the question of whether to legally permit MAiD. In most surveys, approximately two-thirds of the U.S. population approve of it as an option for terminally ill patients with intractable suffering. But when the question of legalization comes to a vote, the results are usually closer to 50/50. This split reflects the inherent tensions in the debate. On the one hand, many people know of cases of severe suffering, even with excellent palliative care, where the need for some predictable escape is most compelling. On the other hand, there are fears that MAiD could be used as a detour that avoids effective palliative care or as a way to eliminate the suffering of vulnerable patients by eliminating the sufferer. Similarly, a majority of physicians favor legal access to MAiD, but only about 30% would be willing to directly provide such assistance even if legally permitted.

Medical Aid-in-Dying in Practice

Palliative care–including excellent pain and symptom management, psychosocial support for patients and families, and assistance with difficult decision-making–should be part of the standard of care for all seriously ill patients. Many studies have demonstrated a significant gap between the potential of palliative treatments to relieve suffering and actual practice. If someone considers MAiD, the first step should be for doctors to ensure that the patient is receiving optimal palliative treatment. But even with the best possible palliative care and support there will likely be a small percentage of cases where symptoms become intractable despite skillful efforts to help. Furthermore, patient suffering cannot be restricted to the physical realm and must include psychological, social, existential, and spiritual dimensions. The medical profession acknowledges that such unacceptable suffering sometimes exists when physicians talk with patients about stopping life supports, but when there is no life support to stop, the medical profession may assume that both the patient and the physician have not tried hard enough with standard palliative measures. The more that nonphysical suffering predominates, the less consensus there is about a patient’s right to die by any means.  In circumstances of intractable patient suffering, there is evidence that some physicians in the U.S. sometimes assist in patients’ deaths.  This is not easily studied because to acknowledge participation a physician must admit to a crime in most jurisdictions. Nonetheless, several imperfect studies of the practice in the U.S. suggest that in states where MAiD is illegal it may account for as many as 1-2% of deaths.

The legal practice of MAiD in the U.S. is best studied in Oregon, where it has been legal since 1997 for terminally ill patients with decision-making capacity who experience unacceptable suffering. Data collected by the Oregon Health Department show that the practice has increased over that time from approximately 1 in 1,000 deaths to approximately 1 in 300 deaths. About two-thirds of patients who receive a potentially lethal prescription die after taking it, while about one-third do not take their lethal prescription and die from other causes.  Although MAiD accounts for a relatively small percentage of deaths in Oregon, approximately 1 in 50 patients talk with their doctors about the option and 1 in 6 talk with their families about the possibility. We also know that pain management and hospice utilization have improved in Oregon since the passage of the Death with Dignity Act, and there is a statewide program to record patients’ wishes about cardiopulmonary resuscitation and other medical interventions (Patients Orders for Life Sustaining Therapy, or POLST).

In the Netherlands, MAiD and voluntary active euthanasia had been openly permitted for over 30 years before they were legalized in 2002. The practices have been the subject of several major studies, which have shown relatively stable rates of MAiD (0.2-0.3%) and of voluntary active euthanasia (1.8-2.5%), as well as increasing public reporting over time (now over 50%). The most controversial findings have been a small but persistent number of “life-terminating acts without explicit requests” (0.7-0.8%).  There has been much discussion about these cases. Advocates maintain that the patients were terminally ill, that they were experiencing intractable suffering, that they had lost capacity for decision-making, and that their physicians had responded appropriately to end their suffering. Critics suggest that these cases are clear evidence of the slippery slope of a practice out of control.  Critics have also seen dangers of a slippery slope in the acceptance of vague psychosocial diagnoses (such as “tired of living”) as justification for voluntary active euthanasia and MAiD.  In the Netherlands, there is a cultural bias that the responsibility to respond to an individual patient’s suffering outweighs the obligation to obey the law in these difficult cases (“force majeure”).

Legalizing Medical Aid-in-Dying

Proponents and critics of MAiD have different ethical reasons to support their positions. The principal arguments in favor of legalization are:

Patient autonomy. A patient should have the right to control the circumstances of his or her own death, and to determine how much suffering is too much.

Mercy. If a patient’s pain and suffering cannot be sufficiently relieved with state-of-the-art palliative care, then the physician has an obligation to do everything within his or her power to relieve that suffering, even to the point of hastening death if there are no realistic alternatives acceptable to the patient

Nonabandonment. The physician’s obligation to his or her patient and family to see the dying process through and to be as responsive as possible outweigh other obligations and restrictions in these troubling circumstances.

The principle arguments against allowing legal access to MAiD are:

Wrongness of killing. Purposefully helping a patient die is categorically wrong under any circumstances; excellent palliative care does not include MAiD.

Physician integrity. Physicians take a sacred oath never to knowingly harm a patient, and MAiD would violate professional standards and undermine trust between physician and patient.

Risk of abuse (slippery slope). Allowing MAiD poses too high a risk to vulnerable patients. Their lives could eventually be ended against their will or when alternative approaches to relieve suffering might be expensive or the suffering difficult to treat.

Whereas most experienced clinicians acknowledge that there are relatively rare cases that might justify MAiD, there are two main empirical questions about the effect of legalization. Would an open, legally regulated approach make the practice of MAiD safer, more predictable, and relatively rare (as appears to be the case so far in Oregon)? Or would it erode the gains made in hospice and palliative care, making the environment riskier and more frightening for our most vulnerable patients (as the cases of involuntary euthanasia and voluntary euthanasia for vague psychosocial distress in the Netherlands appear to suggest)?

Medical Aid-in-Dying Glossary

Medical aid-in-dying: the practice of a physician providing the means for a person with decision-making capacity to take his or own life, usually with a prescription for barbiturates that patient takes himself or herself; sometimes also called physician-assisted suicide, physician aid-in-dying, and patient administered hastened death)

Euthanasia – painlessly killing or permitting the death of individuals who are ill or injured beyond hope of recovery.

Voluntary active euthanasia – hastening one’s own death by use of drugs or other means, with a doctor’s direct assistance.

Passive euthanasia – hastening death by withdrawing life-sustaining treatment and letting nature take its course

Involuntary euthanasia – causing or hastening the death of someone who has not asked for assistance with dying, such as a patient who has lost consciousness and is unlikely to regain it or who lacks decision-making capacity for other reasons.

Last Resort Options

State-of-the-art palliative care remains the standard of care for any end-of-life suffering, and last resort options should only be considered when such treatments are ineffective.  Good palliative care services are not available in all locations; efforts to increase education and proliferation of these services are being made by medical and other professional groups, state initiatives, progressive health care systems, and patient advocates.

When considering cases of intractable suffering in the face of excellent palliative care, whether MAiD is legal or not, clinicians should be fully aware of alternative “last resort” options which may be preferable and about which there is greater moral consensus.  Prescribing medication for aggressive management of pain and other symptoms, even in doses that might unintentionally hasten death, has wide ethical, legal, and professional acceptance. This practice can be justified on ethical grounds by the doctrine of double effect, which holds that even though it is wrong to take someone’s life intentionally, it can be permissible to risk foreseeably hastening someone’s death as long as the intention is to relieve suffering.

Another last resort option with wide acceptance is for patients to stop (or not start) any potentially life sustaining therapy if it does not meet their goal, even if their purpose in refusing treatment is to escape suffering through an earlier death. The decision by patients to voluntarily stop eating and drinking to escape intolerable suffering is accepted by many hospices and has considerable ethical and legal support. The ethical justification for these options is that they preserve patients’ right to bodily integrity and self-determination—to say what happens to their own bodies.

A last resort response to some of the more complex and difficult cases is for physicians to sedate a patient potentially to the point of unconsciousness to enable the person to escape otherwise intractable physical suffering at the end of life. Legal support for this practice includes the 1997 Supreme Court decisions in Washington v. Glucksberg and Quill v. Vacco, which recognized the right to good pain management, even if it requires doses that could hasten death. Justification of this practice invokes a combination of the rule of double effect and the right of bodily integrity. In July 2008 the American Medical Association stated that “it is the ethical obligation of a physician to offer palliative sedation to unconsciousness as an option for the relief of intractable symptoms” at the end of life when “symptoms cannot be diminished through all other means of palliation.”

Giving doctors and patients more open access to, and awareness of, last resort options could have several beneficial effects. One potential effect is increased opportunity for patients to get second opinions from skilled palliative care clinicians to be sure that other less extreme avenues to address seemingly intractable suffering have been considered. Another benefit is reassurance to severely ill patients who fear end of life suffering that there are some avenues of escape that can be pursued openly and predictably. These other last resort options may lessen the desire and need for MAiD. Some patients in Oregon and in the Netherlands are choosing these other last resort alternatives even though they have access to MAiD because, in some circumstances, these approaches are better able to address their particular needs and may be more congruent with their personal values. Finally, the added alternatives increase both clinicians’ and society’s awareness of their obligation to address intolerable suffering when it is encountered.

Timothy E. Quill, MD, is the founding director of the Palliative Care Program at the University of Rochester Medical Center.

Bernard Sussman, MD, is a member of the Palliative Care Program and the Division of Medical Humanities and Bioethics at the University of Rochester Medical Center.

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