(Editors’ note: The following is by Lamar Hankins, founding editor of The Good Death Society Blog. — KTB)
To be clear, I support Medical Aid in Dying (MAID) laws and hope they will become available in all states and territories. But I see them as merely another tool or option in the list of available tools and options if a person becomes seriously ill or does not want to endure what will be, for them, an unacceptable road to an undesirable death. We have advance directives, removal of life-saving medical devices, discontinuance of dialysis, cessation of insulin, voluntarily stopping eating and drinking (VSED), hastening death with inert gas, and other choices, including MAID, available to many of us. All these options can make possible a humane death, though most should be used in conjunction with appropriate palliative care.
But after three years of writing and editing The Good Death Society Blog, serving as a Coordinator for Final Exit Network (FEN), and making presentations about end-of-life issues for over 25 years, talking with hundreds of people seeking a humane death in the face of intractable illness, I realized that my own views about MAID laws have changed.
We went from no MAID law, to one law in one state, to similar laws in ten jurisdictions. While there are some differences in such laws in a few of the more recently-adopting states and one minor change in Oregon’s MAID law, most jurisdictions followed Oregon’s law, largely because it had been successful in protecting patients from possible abuses. In 2009, Montana’s Supreme Court interpreted its state constitution to allow physician-prescribed drugs that a patient could take to hasten death, but without the prescribed safeguards of MAID laws.
Discussions of abuses in implementing MAID laws usually revolve around coercion, mistakes in diagnoses and prognoses, depression, and inadequate or unavailable medical care. Except for the availability of adequate medical care, MAID laws generally have done a good job of preventing abuses.
While MAID is a hot topic, one of the most disappointing aspects of death and dying discussions, symposiums, workshops, debates, and presentations is the virtual absence of consideration of using inert gas to have a humane death, by which I mean a death that is peaceful; without pain; at a time and place, and in a manner of, one’s choosing. Using inert gas to hasten death for a dying person is one of the many choices available, but it has been ignored by most commentators. I can only guess why that is the case.
One forum where inert gas has not been ignored was the recent NuTech Conference about advances in our knowledge about achieving humane deaths; the use of inert gas was an important part of the discussion.
Of particular interest to me, however, was a presentation by Dr. Lonny Shavelson, who founded Bay Area End of Life Options in 2017 to address the needs of patients who qualify for California’s MAID law, which was passed in 2016. Following an appropriate methodology, Shavelson searched for the best drug or drugs for providing a humane death under California’s End of Life Options Act (EOLOA).
He found that the use of certain drugs was leading to prolonged deaths in many people under the EOLOA. Some people were taking many hours to die after ingesting the drugs, some more than a day. This seems less than humane. Shavelson’s goal was to find a cocktail of drugs that would assure death in most cases within two hours. He has finally arrived at a cocktail that begins with taking an antiemetic to reduce the chance of regurgitation, followed about thirty minutes later with a drug that affects the heart. That drug is followed another thirty minutes later with three other prescribed drugs. That combination, in that sequence and timing, achieved death within two hours for 90% of the EOLOA participants who followed the regimen. All died in less than 4.5 hours, with the average at 1.1 hours.
While I am impressed with Shavelson’s work and his dedication to helping his patients find a humane death, I was also surprised by the difficulties involved with using California’s MAID law, a circumstance that likely applies to all such laws.
As my thinking about this situation continued, I began to realize that not only did I find the MAID process troubling as a practical matter, but part of my discomfort with it concerned the involvement of a state law overseen by state government. At one level, I am glad that state health departments keep track of these cases, but the side of my character that recognizes the limits and intrusiveness of government objects to government intrusion into what is perhaps the most personal decision of a lifetime. The state should not be in a position to deny me the right to choose a humane death over an undesirable one, or to decide what kind of death I should have. Yet, unless I am terminal, that is what MAID laws do.
As I considered the relative merits of using inert gas to have a humane death, I found that I considered inert gas superior to MAID in almost every way. The inert gas process does not require a medical prescription, uses a primary substance that is readily available in the marketplace, requires simple materials that can be obtained at local stores throughout the country, is easily learned if explained by a good teacher, is self-administered, works quickly (generally in ten to thirty minutes), and to my knowledge has never failed to produce a humane death when used according to FEN protocols.
With any death, it is often comforting to have the presence of a friend, family member, or other concerned person. That helps make the death more humane in my estimation. Providing a trusted person or persons to provide a comforting presence at a humane death where inert gas is used is a service FEN usually can provide.
FEN has its own comprehensive policies and protocols, which are followed carefully to assure that we do not enable a person who is suicidal to hasten their death for irrational reasons. The purpose of our process, at least from my viewpoint, is because I believe we have a moral obligation to protect irrationally clinically depressed or mentally ill people to the extent possible.
Even with all of FEN’s procedures, we can help people quickly if that is necessary, much more quickly than MAID laws usually can. And we offer counseling, advice, education, and training for people in just as much need for a humane death as those with terminal illnesses, but who are not expected to die within six months, though they have devastating illnesses.
I support MAID laws, even though they are limited in who they can help. But I don’t want to spend what time I have left fighting the battles needed to pass such laws and then expend more time to keep those that have passed in force. I would find my limited time more useful helping people find the humane deaths they seek, rather than arguing with legislators and those opposed to hastening one’s death under any conditions.
We all should have a right to a dignified, humane death. No law in the United States prohibits it. To be denied a humane death seems the greatest indignity of all.
Very interesting, Lamar, however, you fail to mention the right of even the mentally ill to exit life. All suffering whether physical, mental, financial, social, imprisonment or any other problem should have a right to die at any time.
I agree. FEN also takes the stance of deciding who will and who will not be helped, and is in the same bucket as the rest of it….all rests on the decision of the medical committee (or whatever it is called) of FEN, and those whose ongoing misery is due to problems other than physical illness are automatically excluded, an extreme form of discrimination. And I continue to see, as a side comment, that people continue to think death is a bad thing instead of the wonderful graduation experience that it truly is. (E.g., if something is “worse than death,” that’s as bad as it gets; instead of “WAHOO! Welcome home!”)
I totally agree with you on MAiD laws being a good and useful thing for the relatively few people who qualify for them and can make them work for themselves. I also choose to put my time and energy into working with FEN rather than fighting legislative issues.
One of the key messages of Final Exit Networks outreach via the Speakers Bureau, blog , magazine and web page is that the MAID laws are necessary, but insufficient, and that ALL options for a peaceful death should be known by people facing intractable suffering at the end of their lives.
Derek Humphrey’s book Final Exit is the best source for preparing for the dying process and learning all you need to know about the inert gas method.
thanks
MAID laws can be helpful to terminally ill people residing in those states which have approved them, but doctors sometimes disagree about who is within six months of death if the illness progresses in its expected pattern. In addition, there are so many illnesses and medical conditions that are not covered under MAID laws, and many of those who seek an end to their suffering through MAID, cannot find physicians willing and able to support them. While people who apply to FEN submit medical records and a personal statement, as well as a phone interview, the great majority of them will find support with FEN and then they purchase their own equipment and work with a guide on the details. We need both medical aid in dying and also a method that can be managed without medical and governmental involvement, for those individuals who want to take control of their end of life. Most people do not seek this control. For those who do, Lamar Hankins takes us through the decision making process in a discerning way.