The Pressing Need for Medical Aid-in-Dying Legislation
In my personal and professional journey advocating for legalizing medical aid-in-dying with compassion and choices, my thoughts always take me back to a young woman named Brittany Maynard. Brittany’s story was so compelling, that I decided to become an advocate with C&C for this very cause. She was 29, diagnosed with terminal brain cancer and decided that she would end her own life “when the time seemed right.” Maynard was an advocate for the legalization of assisted death. There wasn’t a California law at that time for MAiD, so she had to move to Oregon. Although the right to die movement has been around for decades, what really made a significant impact on this movement is when Brittany Maynard shared her story five years ago. At that time, she and her husband partnered with our organization to help get her message out. Her story was so profound that it resonated with millions around the world. It garnered so much interest and made such an impact, that her interview with People Magazine was the most viewed video in the magazine’s history.
What was important to Maynard was her choice to die.
I also think about some of my loved ones who unfortunately suffered or died due to illness and all of the terminally ill patients in our nation that support MAiD who are still living today. I think about the terminally ill who could not die with dignity and had similar illnesses like Maynard’s but unfortunately had to suffer through their final days. Why didn’t their state support those terminally ill and their choice for dignity? After all, if you recall, our first “right to die” case in America ever heard by the Court, was Cruzan v. Director. Cruzan was argued on December 6, 1989 and decided on June 25, 1990. Nancy Cruzan, was a Missouri woman left in a persistent vegetative state following a tragic car accident. She was kept alive only by a feeding tube and medical care. Her family went through a legal battle to have her feeding tube removed. The case made its way to the U.S. Supreme Court, which had ruled at that time that the Cruzan family did not provide enough “clear and convincing evidence” that Nancy Cruzan did not wish to have her life preserved artificially. Evidence was later presented to the Missouri courts, which then ruled in favor of the family in 1990. The family had stopped feeding Nancy Cruzan that same year, and she died later in June.
As an advocate, I talk to individuals from all walks of life, engage with terminally ill patients, communicate with legislators, follow the current news on medical aid-in-dying and follow legislation which occurs nationwide. Inevitably, I find it raises the issues of the “right to die with dignity” and “preventing abuses.” But I believe death with dignity is a human right. The challenges brought up with abuses simply cannot measure up to the medical humanity that death with dignity should be an individual’s fundamental right.
Medical aid-in-dying is an authentic, progressive movement today. Dr. David Grube is our medical director here at Compassion and Choices. Grube practiced family medicine in Oregon prior to his retirement in 2012 and at one point actually opposed medical aid-in-dying. However, he now believes that as more states have legalized it and no evidence has emerged that patients are being pressured into the process, more people are becoming comfortable with the idea. “It’s like same-sex marriage,” Grube said to The Washington Post. “Forty or 50 years ago, I didn’t even know what a homosexual was. Now I see people in loving relationships, and that’s great.” Kim Callinan is CEO of Compassion and Choices. Callinan recently made a statement that our organization frequently talks about, expanding end-of-life care options as a consumer movement ie that consumers are the ones driving the change. And indeed, she feels we are.
“The change is happening because we are expressing our wishes and values to the medical establishment and public policymakers and they are adapting,” Callinan says. “That is also true that with this change has come trusted partnerships with some very honorable and heroic doctors. These doctors recognized that a key element to patient-directed care is respecting and honoring their patients’ values and priorities, even if they differed from their own.”
Perspectives bring us to asking a simple question: What is medical aid-in-dying? Medical aid-in-dying allows terminally ill adults to request and receive a prescription for medication that they may choose to take to bring about a peaceful death. To qualify, one must be mentally capable, able to self-administer the medication and have a prognosis of six months or less to live. It is quite apparent by statistics that not necessarily everyone takes the prescription. However, it is palliative in itself for the patient to know that they have such an option. There are in fact, many other aspects to consider about this option. Not only does having the prescription deliver comfort whether or not one chooses to use it, this option can also be used in the comfort of home. From the mental health standpoint, if medical aid-in-dying is being considered abuse, then safeguards must indeed be in place. In reference to mental health critical criteria for medical aid-in-dying, a patient’s “right to die” or “the right to death with dignity” is a main proponent of medical aid-in-dying statutes. Yet, why is it that our U.S. Supreme Court has failed to fully recognize the “right to die” as constitutionally based?
The respect for the autonomy of individuals, including patients autonomy at the end of life, is a significant principle of medical aid-in-dying. Isn’t it fascinating that when it comes to respect for autonomy as an ethical principle, we easily take this for granted in our everyday lives? However, terminally ill patients should be able to apply this principle of liberty and self-determination as well. Their rights are disregarded in the United States. There are many terminally ill in America who can attest to its importance. Interestingly, the United States Supreme Court’s rulings in reference to Washington v. Glucksberg and Vacco v. Quill, have stood deeply within legal precedent and common law tradition which reflect the foundation of Anglo-American religious and philosophical values. These values include legitimate interest in safeguarding human life and preserving the integrity of the medical profession. By definition, “autonomy” means, “living by one’s own laws.” In terms of medical ethics, as the Four Principles, originally devised by Beauchamp and Childress explain, personal autonomy is, at a minimum, self-rule that is free from both controlling interference by others and from limitations, such as inadequate understanding, that prevent meaningful choice. In a democratic and liberal society, the autonomous individual can act freely in accordance with a self-chosen plan.
The law is a very powerful teacher. To date, six states currently authorize medical aid-in-dying: California, Colorado, Hawaii, Oregon, Vermont, and Washington. Across these states, there is a combined 40 years of experience safely using this end-of-life care option. Medical aid-in-dying is an option for those who are terminally ill. Though the option need not be exercised, we must evolve as a compassionate state to make MAiD accessible to our terminally ill. Public support largely favors laws that legalize the MAiD procedure. A May 2018 Gallup poll found that 72 percent of respondents believe doctors should be able to help terminally ill patients die. The group with the highest support identified as liberal, 89%. The only group below the majority was weekly churchgoers, at 37%. “We are on both the right side of history and the right side of morality,” Callinan said, arguing that as Baby Boomers age, the option to receive medical aid-in-dying will gain support. “I have no doubt that in time this is going to be an option that’s available in all 50 states.”
There are at least 25 states considering aid-in-dying bills this year, according to Compassion and Choices, and as an advocate, I believe the momentum is on our side.
Our reality today is that physicians do engage in physician assisted death. Isn’t it better to legally regulate it? Withdrawing compassion for unnecessary suffering which is unbearable to a terminally ill patient is cruel. Compassion is an ethical principle which we should uphold for our fellow citizens. I personally feel that if I were terminally ill, medical aid-in-dying would be a compassionate option for me to end my life. This decision or statement does not mean I am depressed, rather, the decision I would make would be a rational choice. Although contemporary palliative medicine is very well capable of alleviating most end of life suffering, it cannot prevent everything. If I were suffering unbearable pain and had exhausted all of my medical or palliative options and knowing that it was just a matter of time before I would die, as a fully competent adult, I should have the right to choose the right to death with dignity as my conscious choice to end my sufferings.
I believe the law is quite clear and that legislation should be recognized.