Private: The Right to Death with Dignity

by Jess Pezley, Staff Attorney, American Association for Justice. This post reflects the views of Ms. Pezley and not those of the AAJ. For more information on California’s End of Life Option Act, please visit endoflifeoption.org.

Earlier this year, on June 9, California’s End of Life Option Act went into effect. Closely modeled after Oregon’s Death with Dignity Act, the statute allows mentally competent adult residents, diagnosed with a terminal illness with a six-month or less prognosis, to voluntarily obtain and ingest a prescription to hasten their dying process.   

For decades, advocacy organizations such as Compassion & Choices, have been fighting for increased end-of-life options, including medical aid-in-dying. In 1994, by voter initiative, Oregon became the first state to allow medical aid-in-dying. The law did not take effect until 1997, after a protracted legal battle to block it ended when voters rejected a legislature-sponsored initiative to repeal the law. Following the victory in Oregon, Washington passed a voter initiative in 2008, the Montana Supreme Court authorized medical aid in dying in 2009 (the only state to do so by judicial decree), and Vermont became the first legislature to authorize an end-of-life options bill in 2013.

At the United States Supreme Court, progress towards medical aid-in-dying was seen in Cruzan v. Director, Missouri Department of Health (acknowledging a constitutional right for individuals to refuse unwanted medical treatment) and Washington v. Glucksberg (acknowledging a constitutional right to palliative care, despite denying to recognize a constitutional right to medical aid-in-dying). Yet after years of advocacy, only a small handful of states had authorized medical aid-in-dying as an end-of-life option.

Then, in 2014, a 29-year-old woman with terminal brain cancer recorded a video that started a nationwide conversation. Viewed today over 11 million times, Brittany Maynard’s video advocates for the option to access medical aid-in-dying, not only in her home state of California, but across the nation. Her story—how she reluctantly uprooted her life and moved from her home in the San Francisco Bay Area to Oregon to access the state’s Death with Dignity Act—shaped the medical aid-in-dying movement for millions of Americans.

Brittany Maynard dedicated the final months of her life to increasing awareness of medical aid-in-dying; her message did not go unheard. In 2015, 25 state legislatures and the D.C. city council introduced medical aid-in-dying bills, and on October 5, 2015, Governor Brown signed into law the End of Life Option Act in Brittany’s home state of California.  

Yet despite this progress, the fact remains that medical aid-in-dying is only an option in five out of 50 states. Each attempt to pass medical aid-in-dying legislation is met with harsh opposition. Often motivated by religion, opponents argue that medical aid-in-dying is tantamount to euthanasia or suicide, that it preys on vulnerable individuals, or that it strips doctors of their rights. While these arguments are specifically tailored against medical aid-in-dying, the opposition mirrors the paternalism seen before against other progressive causes, such as the fight to protect a woman’s right to choose or to establish equal rights for the LGBT community. In each instance, the opposition attempts to limit an individual’s rights under the misguided perception that such limitation benefits the individual.

But preventing medical aid-in-dying will not save a terminal patient. Rather, it is a denial of personal autonomy, a limitation of the control one has over his or her life in its final moments. And it is a nonsensical one at that. Constitutionally secured is the right to refuse medical treatment, the right to stop nutrition and hydration, and the right to receive palliative sedation to the point of unconsciousness. The exercise of any of these rights has the potential to hasten one’s death, the last of which requires an affirmative act by a doctor. Yet, these rights are constitutionally guaranteed. So why draw the line at medical aid-in-dying?

Opponents often point to society’s deeply-rooted objections to euthanasia and suicide. However, medical aid-in-dying is neither. Euthanasia requires a doctor or other healthcare professional to administer the drug or perform the procedure necessary to end an individual’s life; medical aid-in-dying requires self-administration. Why does this distinction matter? When a terminally ill individual self-administers a drug prescribed to end her life (specifically, after undergoing the legally mandated process) there is little doubt that the decision to do so is her own. In circumstances of euthanasia, especially when an individual is too incapacitated to express her desires or self-administer, it is much harder to determine whether or not the choice was voluntary. Each of the five states that currently allow medical aid-in-dying requires self-administration of the prescription drug.

While medical aid-in-dying is not euthanasia, it is also not suicide. Physician-assisted suicide—a term used too often to describe medical aid-in-dying—is an inaccurate label. Under the current medical aid-in-dying statutes in this country, terminally ill patients  cannot elect to obtain and/or ingest a lethal prescription unless they are first determined, among other things, to be: (1) terminally ill and (2) mentally capable of making such decisions. If a doctor determines an individual is suicidal, then that individual will not meet the second requirement and the prescription will be denied. Those who do obtain the prescription are dying and seek only the option to shorten that dying process. Those who ingest the prescription do not die of suicide; their cause of death is the underlying terminal illness.

This distinction is an important one: The individuals who seek and receive prescriptions under medical aid-in-dying statutes do not want to die. Their death is inevitable. They want a choice. Alternative options for some terminally ill individuals, such as palliative sedation, may not be viable or desired options for others. The reasons terminally ill patients turn to medical aid-in-dying are personal to them. Whether the decision is made because of unique medical circumstances (such as morphine-intolerance), concerns about the loss of quality of life, or a desire to maintain autonomy over the circumstances surrounding their deaths, the choice is their own. Medical aid-in-dying is not an act of suicide; it is one of personal autonomy.

“I would not tell anyone else that he or she should choose death with dignity. My question is: who has the right to tell me that I don’t deserve the choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?” – Brittany Maynard

Another argument against medical aid-in-dying is that vulnerable populations—such as the elderly, disabled, undereducated, poor and minorities—may be targeted and coerced under the statutes. The facts do not support these fears. Since granting access to medical aid-in-dying in their respective states, both Oregon and Washington have collected data on all individuals who have obtained prescriptions under their statutes. These individuals are overwhelmingly white, college-educated and privately insured. While neither Oregon nor Washington are representative of nationwide demographics, both states’ experiences with medical aid-in-dying refute the notion that vulnerable populations are at increased risk of targeting or coercion.

To ensure a patient’s decision is both fully informed and voluntarily made, doctors and patients must adhere to a strict, mandated procedure before a lethal prescription can ever be written. In California, a patient must orally request the prescription twice, waiting 15 days between each request. A patient must then make a written request, in the presence of two witnesses, at least one of whom is not an heir. After these requests are made, a doctor must discuss all treatment options with the patient. Then the doctor must determine patient eligibility—namely that the individual has a terminal illness with only six months or less to live and is competent. After a patient is found eligible, another doctor must confirm the initial finding. A psychological evaluation is required if either doctor suspects the patient has mental health issues affecting his or her decision. After a patient is approved for the medication, she must undergo another waiting period between receiving and filling the prescription. These procedures are specifically designed to protect patients and honor their end-of-life wishes.

But what is being done to protect the rights of doctors and pharmacists? Physicians who object to medical aid-in-dying have no obligation to discuss it as an end-of-life option or write such prescriptions. Likewise, pharmacists who object to the prescriptions can refuse to fill them. Under California’s law, physicians are not even required to refer patients to another colleague who is willing to discuss the option. Simply put, these statutes do not compel a doctor or pharmacist to act. In fact, the doctors whose rights are actually being limited are those who want to discuss medical aid-in-dying with their patients, but cannot for fear of criminal prosecution—a reality for many doctors practicing in states that do not distinguish medical aid-in-dying from assisted suicide.

The arguments seeking to limit end-of-life options do not hold up. Despite the opposition’s characterization of the laws, medical aid-in-dying strives only to extend the right to self-determination in both sickness and in health. The decisions people make define them throughout their lives; this authority should not be denied as they near death. A right as fundamental as personal autonomy should not be left up to geography—all terminally ill individuals should have the same options as those living in Oregon, Washington, Vermont, Montana, (and now) California.