Lamar Hankins: Our final freedom — The right to decide how, when, where we die
By Lamar Hankins
FFRF’s new secular poll results reported in the October Freethought Today included one result that got my attention — 98 percent of nonbelievers support the right to die with dignity. That figure corresponds with my impressions working in the right-to-die movement for almost 30 years.
In the early 1990s, I joined about a half dozen others in the Austin, Texas, area to form a local chapter of the Hemlock Society, created in 1980 by Derek Humphry. Our purpose was to learn how to take charge of the end of our lives to avoid suffering, should we be unfortunate enough to be stricken with a debilitating illness from which we would not recover.
We were not a morbid group in the least. In fact, we were jovial, yet thoughtful and determined to make the best of whatever time we had left. The group — the Austin Hemlock Society — met regularly until 2004, when the national Hemlock Society changed its name to End-of-Life Choices, and then was merged into Compassion in Dying, finally changing its name to Compassion & Choices.
Humphry’s 1991 book Final Exit, in a later edition, explains how to use inert gas to have a peaceful, effective and reliable hastened death. The most readily available inert gas at the time was helium, but nitrogen is now most often used. In 1999, at the urging of psychologist Faye Girsh, then the president of Hemlock, the group started a program called “Caring Friends,” which provided trained volunteers to meet with an applicant and teach the person how to hasten their death using inert gas so that they could avoid suffering from a terminal illness or avoid a deteriorating quality of life. The volunteer also was available to be at the person’s side when they died to provide emotional support — a caring friend.
After the mergers, the new organization discontinued the Caring Friends program to focus on promoting legislative solutions to aid in dying for terminal patients (defined as six months or less to live). When that happened, several longtime Hemlock leaders formed Final Exit Network (FEN) to continue the work of Caring Friends under the name Exit Guide Program. Volunteer medical doctors, psychologists, social workers and others from all walks of life joined together to establish the program, develop procedures, start a volunteer-training regimen and build a new organization dedicated to instructing and educating those who wanted to hasten their death because their quality of life had become, or soon would become, unacceptable to them as a result of deteriorating health.
My death, my choice
For the last 40 years, the idea of a right to die has been widely debated in the United States. Most people claim this right by refusing ultimately futile medical treatment or procedures, sometimes through advance directives. Often, they are aided by hospice, which focuses on palliative care of a terminally ill or dying patient’s symptoms, whether physical, emotional or social. For some people, however, palliative care is ineffective or does not meet their other needs, and they seek to end their lives rather than continue suffering. Many people are surprised to learn that ending one’s own life is not against the law. What is prohibited in most, but not all states, is actively assisting someone to end their own life.
Perhaps the most important aspect of ending one’s life is that it is the individual’s decision to proceed in such a fashion. And that focus on each individual’s decision is made clear by Final Exit Network’s early billboard campaign “My Life, My Death, My Choice,” which was intended to promote autonomy in such decisions and encourage thoughtful discussion about the end of life.
The “Guiding Principle” of the nonprofit, volunteer-directed Final Exit Network explains its philosophy:
“Mentally competent adults have a basic human right to end their lives when they suffer from a fatal or irreversible illness or intractable pain, when their quality of life is personally unacceptable, and the future holds only hopelessness and misery. Such a right shall be an individual choice, including the timing and companion, free of any restrictions by the law, clergy, medical profession, even friends and relatives no matter how well-intentioned. We do not encourage anyone to end their life, do not provide the means to do so, and do not actively assist in a person’s death. We do, however, support any [individual] who requests it when medical circumstances warrant their decision.”
Volunteers help implement the FEN Exit Guide Program in several ways:
• Producing its newsletter.
• Serving as senior and associate Exit Guides.
• Conducting interviews with program applicants.
• Serving as coordinators to answer questions from applicants and those seeking information about the program.
• Participating on FEN’s Medical Evaluation Committee (MEC), which consists of volunteer doctors who determine whether the applicant satisfies FEN’s requirements for exit guide educational and training services.
• Providing training to those interested in becoming guides.
• Serving on FEN’s board and providing other organizational services.
In 2017, FEN began an edited blog about end-of-life and right-to-die issues. The Good Death Society Blog is searchable and discusses a wide range of issues relevant to FEN’s mission.
Although FEN does not require a client to have a terminal illness to be eligible for its educational services, it does require mental competency at the time of application and at the time the person chooses to exit, as well as the physical ability to do so. In addition to the mental competency criterion, FEN requires that applicants
• Have “existing or reasonably anticipated unbearable suffering or an unacceptable or intolerable quality of life with no reasonable hope of improvement.”
• Demonstrate that they have informed or expressed “a willingness to inform close family members and intimate associates of the applicant’s intent.”
• Submit a personal statement describing how their “medical condition meaningfully reduces or will reduce the applicant’s quality of life, including examples of current physical or mental decline, the applicant’s values as they pertain to end-of-life choices, and a statement of what the applicant wants from Final Exit Network.”
In addition to meeting all the general criteria, an applicant must have serious physical disease; chronic, severe, somatic pain as demonstrated in medical records; dementia (prior to mental incompetency); or a constellation of irreversible medical conditions.
FEN educates about one other method of hastening death — voluntarily stopping eating and drinking (VSED). It is another way to have a good death that is often assisted by hospice. VSED frequently occurs naturally near the end of a disease, or it can be intentionally pursued to avoid lingering, sometimes for years. With VSED, dehydration causes the body to shut down. Death usually occurs within seven to 10 days or so after VSED begins.
FEN has developed a special supplemental directive using VSED and designed for those who have dementia, but who want to live only as long as the disease leaves them with some enjoyment in living or recognition of who they are. More information about VSED can be found at finalexitnetwork.org.
Obviously, not everyone will need or want to end their own life before it comes to a natural end. We won’t all need medical assistance in dying or inert gas to have a good death. But many of us who have had a family member or friend with dementia or Parkinson’s or ALS or cancer or some other condition which makes a good death difficult or impossible, often remark that we don’t want our own lives to end that way. Most of us will die quickly of a heart attack, or in our sleep, or by misadventure. Still others will find the help of hospice essential to having a good death. But many of us may want to take matters into our own hands, with the help of a clinician or the advice and counsel of FEN.
Unlike medical assistance in dying (MAID), which is available in 10 U.S. jurisdictions (Montana by judicial decree, and by law in California, Colorado, District of Columbia, Hawaii, Maine, New Jersey, Oregon, Vermont and Washington), FEN operates throughout the country, responding to the suffering of people who have a debilitating illness from which they will eventually die. FEN’s application process is comprehensive, and yet available to far more people than MAID, and is requested often even in those jurisdictions that have MAID laws.
The work that FEN does demonstrates that, with appropriate safeguards, it is possible to take control of one’s life to avoid additional suffering when facing a debilitating or irreversible illness. Helping people in distress at the end of their lives is often challenging for both FEN’s volunteers and their clients, but it has been among the most rewarding work I have ever done, and the people who are helped are invariably grateful. Their gratitude seems tied to their desire to exercise that final freedom — the freedom to control the quality of their lives, avoid suffering, and determine the manner and timing of their deaths.
FFRF member Lamar Hankins lives in Texas with his wife, June.