Texans are unlikely to see a medical assistance in dying law any time soon, but other options are available for those facing an unacceptable, protracted death that lacks the dignity most people seek.
[Lamar Hankins will be Thorne Dreyer’s guest on Rag Radio from 2-3 p.m., Friday, October 13, 2023, on KOOP-FM 90.1 in Austin or at KOOP.org.]
Few people want to discuss dying, including most Texans. Nevertheless, more and more people are demonstrating a willingness to plan for what every person will eventually face. The use of advance directives; the proliferation of Death Cafes, where death and dying issues are discussed in an informal setting; organized discussions in many social, nonsectarian, and religious groups; and the passage of Medical Assistance in Dying (MAID) laws in several states over the past few years attest to an increasing interest in thinking about and discussing death and dying.
The need for assistance in dying
Many people don’t see the need for assistance in dying. I will point to four examples by way of explanation. An inoperable brain tumor can lead to painful headaches and seizures that leave a person in misery, with no hope of recovery. As the symptoms get closer and closer together, they may have no opportunity for a peaceful life. Often, the medications prescribed to control the symptoms leave the person unable to function in any normal way. Death is certain, but how soon it will come is unknown. Brittany Maynard, who had an inoperable brain tumor at the age of 29, explained her decision to use the MAID law in Oregon to end her own life:
Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain. Now, I’m able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love, and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net. I hope for the sake of my fellow American citizens that I’ll never meet that this option is available to you. If you ever find yourself walking a mile in my shoes, I hope that you would at least be given the same choice and that no one tries to take it from you.
Maynard ended her life using Oregon’s MAID law (named the Death with Dignity Act) nine years ago.
Over the last 10 years, I have spoken with several people who have ALS or Huntington’s. These two diseases share some troubling symptoms — loss of muscle control that affects walking and eating. A common development with the inherited disease Huntington’s is dementia, something experienced by both Woody Guthrie and his mother before him. As ALS progresses, choking on excess saliva or a drink of water may increase, along with cramping in one’s legs, back, and neck. Difficulty with speech, swallowing, and coordination are symptoms common in both diseases. With ALS, assistance with breathing usually becomes necessary. Dying from ALS usually means suffocation as breathing muscles become paralyzed. Most of us can understand why some people would choose to end their lives to avoid such misery and have a peaceful death on their terms.
A diagnosis of Parkinson’s Disease, with which I am also familiar, may involve a whole host of troubling changes in functioning, including tremor — a rhythmic shaking in hands or repetitive movements in fingers. Movements slow down, making once simple tasks difficult and time-consuming. Steps may become shorter when walking, and shuffling or dragging feet is common. Muscle stiffness may occur in any part of the body, which can be painful and limit range of motion. Posture may become stooped, and falling or balance problems increase. There often is loss of automatic movements, with a decreased ability to perform unconscious movements, such as blinking, smiling, or swinging one’s arms when walking. Speech may change, including speaking softly or quickly, slurring, or hesitating before talking. Speech may become more of a monotone. Some people with Parkinson’s lead joyful lives, until they no longer can. One friend with Parkinson’s made a mental checklist of the changes she might expect. As the disease progressed, she noticed each change and checked them off her mental list until she decided it was time to end her life, which she did.
Neurological diseases like ALS, Huntington’s, and Parkinson’s rarely qualify for MAID because by the time there is a six-month prognosis, the individual no longer has the muscle control to ingest the lethal medication.
Growth of MAID laws
I have advocated for a right to die for over 30 years. In 1993, I joined with a handful of other like-minded people in Austin, Texas, to organize a chapter of the Hemlock Society as a resource for people facing an unacceptable, protracted death that lacks the dignity they want. My commitment to this project was born from experiences with the deaths of three friends during an 18-month period in 1989 and 1990. At the time, there were no satisfactory solutions to a peaceful and good death. Physician assistance to achieve that end was not available anywhere in the U.S. The first MAID law went into effect in Oregon in 1997, though it had been approved by referendum three years earlier, which led to lawsuits that delayed its implementation.
The Supreme Court of the United States addressed the issue of a right to a physician’s assistance in dying, the same year Oregon’s law took effect, in Vacco v. Quill, 521 U.S. 793 (1997). It decided there is no constitutional right to die on one’s own terms with assistance from a physician. The Court’s decision, however, allows states to decide whether they will permit physician-assisted death within their state. A physician’s assistance under MAID laws is generally to determine that a person has six months or less to live and is competent, and then to write a prescription for lethal medication; patients must administer the drugs to themselves.
Now, MAID is legal in 10 state — California, Colorado, Hawaii, Maine, Montana (through a court decision, not legislation), New Jersey, New Mexico, Oregon, Vermont, Washington — and the District of Columbia. Vermont does not require those seeking MAID to be a resident of the state; establishing residency in other states with MAID laws usually is not difficult, but it may be expensive and time-consuming, major impediments for seriously ill people with six months or less to live, as required by MAID laws. In May of this year, the state of Oregon settled a lawsuit about its MAID residency requirement by agreeing not to enforce it in all but one county in the state; the District Attorney in that county refused to join in the settlement.
This year, in nine additional states, bills have been filed that would legalize MAID — Rhode Island (RI H5210), New York (NY S02445), Massachusetts (MA H2246), Minnesota (MN HF1930), Connecticut (Substitute for Raised S.B. No. 1076), Florida (FL H12310, Nevada (NV SB239), Pennsylvania (PA HB54), and Delaware (DE HB140). While MAID may pass in some of these states, it is unlikely to expand to most of them in the near future.
According to the Completed Life Initiative, passage of MAID laws has been attempted in all but seven states — Alabama, Idaho, Illinois, South Carolina, South Dakota, Texas, and West Virginia. The seven include Texas, although former state Senator Gonzalo Barrientos introduced a MAID bill in the 1990s to stimulate discussion of the subject, but the bill never received a hearing.
The Hemlock Society and Final Exit Network
While a right to die is not recognized by the Supreme Court, and is opposed by some religious groups and disability advocates, it is legal in all states of the U.S. to end one’s life without the assistance of a physician, other medical professional, or any other person. In a handful of states, some assistance from others is allowed. The repeal of laws against suicide, which started over 60 years ago and concluded in the 1990s, is what makes ending one’s own life legal; having witnesses to the death is also legal.
This decriminalization of suicide, and the search for a “good death,” a dignified death, led Derek Humphry and others in 1980 to form Hemlock Society USA (Hemlock). This group provided information to its members about how their deaths could be accomplished by peaceful and effective means, usually by the use of lethal drugs that could be obtained by stockpiling prescriptions or by purchasing them from Mexican pharmacies and elsewhere, solutions now less readily available. Humphry discusses this information in his best-selling book Final Exit (1991).
In 1998, Hemlock, through its Caring Friends program, initiated by then Executive Director Faye Girsh, began making information available to its members about using helium to accomplish a peaceful and dignified death. By 2004, when Hemlock’s board was taken over by people who preferred working for the passage of MAID laws in the states, helium had proven to be a relatively simple method to end one’s suffering and irreversible decline from many illnesses. Later in 2004, several leaders of Hemlock formed Final Exit Network (FEN) to continue the work of Caring Friends through what is called the Exit Guide Program.
FEN’s purpose is and has been to “Educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence, and defend their right to choose.”
FEN and its members are guided by the following philosophy:
We hold that mentally competent adults who suffer irremediably from illness, intractable physical pain, or a constellation of chronic or progressive physical disabilities, or who face an impending loss of autonomy and selfhood through dementia, have a basic human right to choose to end their lives when they judge their quality of life to be unacceptable.
Most people die in circumstances where seeking an early death is not wanted or needed. But for those who seek to avoid an undesirable dying process, knowing that there are options can provide comfort. The information in this article is for those people.
Using inert gas for self-deliverance
For nearly 15 years after the Caring Friends program began, the simplest way to get helium for self-deliverance (a term used during the Hemlock years) was by purchasing inexpensive helium balloon kits at stores like Walmart and Target. But around 2012 or so, manufacturers of the kits began replacing about 20% of the helium in the tanks with oxygen, which rendered the kits unreliable for ending one’s life.
By then, researchers had found that several other inert gases would work the same way as pure helium. FEN began teaching about the use of nitrogen, how to obtain it, and how to use it effectively with a self-made hood.
Breathing pure inert gas forces out the oxygen in the hood and results in a peaceful hypoxia, a condition in which the blood no longer carries oxygen to the brain. Nitrogen (and also helium) has no odor or taste. Unconsciousness usually occurs in less than a minute after an individual introduces nitrogen into the hood, which they place over their entire head. Most people die within fifteen minutes, without any feeling of oxygen deprivation or distress. But FEN does not supply all the details of the process to just anyone. Individuals must apply to receive such information through the Exit Guide Program, which relies almost entirely on volunteers.
The program’s application process may take several weeks, depending on each individual’s circumstances. Applicants must explain in writing why they want to end their own lives and provide background information directly and through a structured interview process; the applicant provides medical records to FEN through a Coordinator working with the applicant by phone consultation; three members of a Medical Evaluation Committee (MEC) made up of physicians, medically trained volunteers, and those trained in mental health, review the medical records and other documents to determine if the applicant meets FEN’s guidelines; if so, usually two Exit Guides are assigned to educate the applicant about the inert gas method of self-deliverance. A Senior Exit Guide may find that there are reasons that the education process should not proceed, and the application approval may be withdrawn at that point. An example of a reason approval could be withdrawn would be that the information previously provided by the applicant is significantly inaccurate.
Applying to FEN for training and education
Applications for FEN’s Exit Guide Program begin with calling FEN’s answering service or by submitting a brief form from FEN’s website, after which a FEN Coordinator contacts the applicant by phone to begin the application process.
FEN uses several criteria for screening applicants. First, applicants must be mentally competent adults. In addition, FEN volunteers are sensitive to mental health concerns, which are evaluated at each step in the process. If someone is suspected of being actively suicidal, for example, seriously depressed, or expressing suicidal thoughts not associated with their health condition, they are referred to resources that will provide support.
Applicants must also provide evidence of serious physical suffering, an impending loss of selfhood through dementia, or a diagnosis of a hereditary or acquired neurological condition that is irremediable and will lead inexorably to what to them is an unacceptable or intolerable quality of life before their death. Examples include Parkinson’s, Huntington’s, ALS, MS, Alzheimer’s, and other forms of dementia. There is no requirement that applicants be terminally ill or within six months of death, criteria in all MAID laws.
An additional category for acceptance in the Exit Guide Program is that an applicant may suffer from an array of medical problems that result from intractable chronic conditions. The applicant may have concluded that their life is complete and that they have made a rational decision that their advanced age and medical condition(s) warrant self-deliverance.
While the Exit Guide Program does make sure that applicants are aware of treatment options, it does not require them to pursue treatment that is unacceptable to them. Generally, applicants must be willing to inform close family members and associates of their plans to exit before their deaths might inevitably occur.
By the time an applicant’s initial application has been approved, a FEN Coordinator, a trained interviewer, and three members of the Medical Evaluation Committee have closely examined the application. A Senior Exit Guide may then have the first in-person visit with the accepted applicant to further assess their circumstances. If all previous information is confirmed, the education and training process can go forward. If the accepted applicant asks for Exit Guides to be present at their death, usually two guides will honor their request to provide a caring presence and provide emotional support, sometimes joining close family or friends to be with the person when they die.
To be clear: Exit Guides do not provide physical assistance in achieving a person’s death, but provide only advice, education, and training to the person. To be accepted, an applicant must be able to do all of the physical tasks involved with using inert gas for self-deliverance. This includes making their own hood, attaching tubing between a gas regulator and the hood, acquiring the inert gas and other materials needed, attaching the regulator to a gas canister, turning the valve on the canister, and lifting and moving the canister.
The education and training role of guides is protected by the First Amendment to the U.S. Constitution, as well as most state constitutions. Nevertheless, a few states have sought to override the First Amendment. Those states’ laws have been and are being challenged.
FEN does its work in all states, including those with MAID laws, filling in many of the gaps that are built into those laws. FEN’s application process differs significantly from MAID processes, but it is arguably more thorough, involving many different trained people, sometimes as many as three doctors, often a clinical psychologist, and requiring detailed background information and medical records that permit independent analysis of medical claims. Sometimes, the MEC requests additional specific records to help it evaluate the application. For several years, at least two psychiatrists served on the MEC. While the makeup of the MEC changes over time, its foundation is built on medical doctors and those with specialized training in mental health.
Research with FEN applicants shows that the older people, whom FEN primarily serves, “are quite prepared spiritually, intellectually, and emotionally to step in and take charge of end-of-life decision-making when the medical system can do nothing to improve their autonomy and quality of life.” [Robert R. Blake (2023): Moral locus of control in hastened death when faced with irremediable health conditions, Mortality, DOI: 10.1080/13576275.2023.2203804, at page 9.]
MAID and self-deliverance are different from suicide
Those who study in the field of suicide prevention or seek to help people thinking about suicide find many distinctions between suicide and the use of MAID to end one’s life. The American Association of Suicidology (AAS) recognizes that the practice of MAID is distinct from the behavior that has been traditionally and commonly described as suicide, in at least 15 ways. Almost all of the same distinctions apply to the rational decision to end one’s life through FEN’s Exit Guide Program. People with irreversible or intractable medical conditions that will lead to an unacceptable death, and who seek to die to avoid the worst complications of their condition, are not suicidal. Absent their condition, they would not want to end their life. Such people are not choosing between living and dying; they are choosing when they will die and under what circumstances. By making this choice, they are trying to avoid a death process that is unacceptable to them, may result in unwanted suffering, or may place them in circumstances they wish to avoid.
I have spent 10 years doing volunteer work for FEN, first as a proofreader for the newsletter, then as an interviewer, Coordinator, Associate Exit Guide, speaker and resource person for groups, and three years as editor of FEN’s blog. The views expressed in this article are my own, based on personal experience and observation, and have not been reviewed or approved by FEN or any other right-to-die group discussed.
Swiss groups supporting voluntary assisted dying (VAD)
Switzerland has allowed voluntary assisted dying (VAD) since the 1940s. Under Swiss law, assisted dying is lawful if the person who wants assistance to die possesses decision-making capacity, has control over their death, and the motives of those assisting are not selfish or self-serving. Usually, the person drinks sodium pentobarbital mixed in some other liquid or by activating a device that introduces the drug into the body. Several organizations there provide help to those wishing to voluntarily end their own lives. The two most prominent groups that accept non-Swiss citizens are Dignitas and Pegasos.
The primary difference between these two groups is that Pegasos will accept an applicant who is not terminally ill, but who wishes to die because of problems associated with old age and a failing quality of life. Dignitas requires that applicants have a terminal illness (but a six-month prognosis is not required), are living with extreme pain or unbearable symptoms, or have an unendurable disability.
The cost of the services of both organizations is around $11,500, depending on exchange rates. The high cost includes the paid services of doctors, psychiatrists, lawyers, and other professionals, as well as the cost of maintaining the group’s facilities. The application can take from one to more than four months, depending on the circumstances of the applicant, difficulty with obtaining required medical records, and necessary approvals from Swiss authorities. In addition, applicants must pay for their own travel, lodging, and food expenses.
In contrast to FEN, which provides its educational and practical advice at no charge in a person’s U.S. residence, dying by one’s own hand in Switzerland is an expensive proposition and will not work for someone who cannot travel to Switzerland. The cost of dying using inert gas is around $400, which includes the cost of nitrogen, regulator, hood, and tubing, all of which are paid for and obtained by the applicant.
Resources
A digital edition of Derek Humphry’s book — Final Exit 2020 — is available at https://www.finalexit.org/index.html. Another more technical and detailed book, The Peaceful Pill Handbook (now The Peaceful Pill eHandbook–The Essentials, along with other versions) is a resource book in self-deliverance published by Exit International, originally organized in Australia by former medical doctor Phillip Nitschke. The book is updated regularly and clearly worth the price (around $90) for those who want to have the most current technical information and research about self-deliverance methods.
FEN’s website is https://finalexitnetwork.org/, where more information can be found. Applicants can click on the “Contact Us” link at the top of the opening page. Information is also provided about voluntarily stopping eating and drinking (VSED), another way death can be hastened.
Contrary to statements frequently found in the media, a VSED death is not caused by starvation, but by dehydration, usually within seven to 10 days. More detailed information about VSED can be found also on FEN’s blog and website, at the Compassion & Choices website <>, and in the book Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, published in 2021.
FEN also offers a supplemental directive for those concerned about dementia, through which they can direct that VSED be available to them at an established point in their dementia.
FEN also refers anyone experiencing a mental health crisis or severe depression to the 988 Suicide & Crisis Lifeline, a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress, 24 hours a day, seven days a week. To access this help, anyone can call, text, or chat by dialing 988.
Disability activists’ opposition to the right to die
Some disability activists claim that the services offered by MAID laws, FEN, Dignitas, and Pegasos discriminate against the disabled. They present two primary reasons: First, such services may reduce the available medical care to the disabled to save money for health insurance companies; second, the mere availability of such services puts pressure on the disabled to end their lives prematurely.
There is no doubt that insurance companies use every means available to increase profits. With respect to MAID laws, however, there is a simple remedy — prohibit insurance companies from denying medical services to a disabled person. Further, most disabled people do not fit into the six-months-to-live prognosis and would not qualify for MAID anyway, making this a bogus claim.
The second reason, the fear that the disabled will be pressured to end their lives, overlooks that anyone who avails themself of the end-of-life services discussed must be competent and use the services voluntarily. What disability groups such as Not Dead Yet and ADAPT (along with several others) suggest when they make this allegation is that disabled people lack sufficient agency to decide when it is time for them to exit this life.
While some disabled people, perhaps many, may be vulnerable to pressure from those who don’t want them around anymore, the problem seems no less severe than that faced by the elderly and infirm (who also may be disabled). The solution to this problem is not to deny everyone this right. It is to make available to all disabled people the same protection that is widely available to protect the elderly from exploitation and abuse. Otherwise, the disabled advocates opposed to MAID laws and the services of right-to-die organizations infantilize the disabled and ignore the voluntary nature of ending one’s life on each individual’s chosen terms. To deny the disabled access to the right to die on their terms is flagrant discrimination without rational justification. There is irony in the opposition of disabled activists to the right to die. In any other realm of life, those advocates would be incensed if the disabled were not afforded the same rights and access as all other people.
My friend and correspondent Maia Calloway, who suffers from Progressive Multiple Sclerosis, explained her position on the right to die:
This is a disease that takes your life piece by piece, but never actually kills you. It is like being buried alive. Progressive MS is gruesome. It is slow and it often feels like everything that I was was being erased. And in the most advanced stage, I had seen friends confined to beds and chairs who could not move or communicate and were forced to live an existence that I would wish no human being to ever endure, sometimes for years. I knew that I would not let this happen to me. It could not happen to me. It went against everything that I was in life before this illness, which was always about freedom and self-determination.
Is it any wonder that Maia is planning to seek relief from her unremitting, irreversible suffering? But none of the MAID laws in any state in the US can help her. This is a form of discrimination that should be remedied. Maia traveled to Zurich, Switzerland, in 2016 to learn first-hand what she would need to do to qualify for assistance in ending her life. She has not reached the point where she is ready to hasten her own death, but she knows that time will come, and when it does, she will not receive the equal protection of the law, nor will she find the due process also guaranteed by our Constitution. The MAID laws we now have in the U.S. have created important rights for some hopelessly ill patients, but many others are left to suffer deaths that no one would describe as good.
Recently, Maia, who is now in her mid-forties, shared this update on her condition:
My illness is life ending and rapidly degenerative. I have been struggling with MS since my late teens. Today, I suffer from major spinal cord and brain stem degeneration with spinal lesions from C2 to T11 which cause regular seizures, convulsions, paralysis, respiratory and pulmonary weakness, intermittent blindness, slurring of speech, body locks, tremors, electric shock-like pains all over my body. I live in intractable pain and cannot move very well.
Maia’s current dilemma is deciding when it is time to exit this life. It is difficult because when faced with a condition like Maia’s, one wants to have as much good life as possible before concluding that there is no or not much good life left, and the time has come.
Epilogue
Anyone facing an intolerable, perhaps protracted, death, or facing an unacceptable and irreversible decline of mental and/or physical functions, or a significantly diminished quality of life, can do their own research using the resources provided above. The result may be that they will find a way to have a good and dignified death — one that doesn’t depend on the whims of legislators, or the personal decisions of their doctors, but puts them in charge of their own life and death.
[Rag Blog columnist Lamar W. Hankins, a former San Marcos, Texas City Attorney, has a Doctor of Jurisprudence degree from the University of Houston. Hankins is retired and volunteers with the Final Exit Network as an Associate Exit Guide and contributor to the Good Death Society Blog.
Read more articles by Lamar W. Hankins on The Rag Blog and listen to Thorne Dreyer’s Rag Radio interviews with Lamar.
