A question I get from readers: “Gerda, how will you die when your quality of life becomes unacceptable?”
Featured art: Alessandro Sicioldr Bianchi. L’attesa o il Risveglio (Awaiting the Awakening), 2018
Every few months I receive letters from blog readers asking the question in the title: they want to know the specifics of how I, Gerda, intend to exit my life when it no longer meets the criteria of what is, for me, a worthwhile existence. Since I can no longer manage to write personally to each individual person who asks, I have decided to publicly respond to the reader who has most recently and most extensively disclosed her distress about impending Alzheimer’s dementia, Kimberley Carlson. Kimberley has given me permission to use her name, as well as to quote form her honest and eloquent letter to show the fear and dread that inevitably accompany questions about final-stage dementia. As I address Kimberley, I will think of her as a representative—or avatar!—of all of you, my readers, whether you have dementia in your family or not. Death, after all, awaits us all, as described in Ecclesiastes 9:2, New International Reader’s Version:
Everyone will die someday. Death comes to godly and sinful people alike. It comes to good and bad people alike. It comes to “clean” and “unclean” people alike. Those who offer sacrifices and those who don’t offer them also die.
A good person dies,
and so does a sinner.
Those who make promises die.
So do those who are afraid to make them.
Since it is slow and hard for me to write new material, I write this by cutting and pasting from my answers to previous reader requests, previous posts, conference addresses, my and Peter’s end-of-life documentation, and so on. In addition, Peter has helped me research and organize new information about our currently preferred planned-suicide method, which I will describe below. He also edited the piece and helped me better cobble together my disjointed first efforts. For me, working out the details of how I plan to die has largely removed fear and dread from my life. I have by now lived with joy for 10 years after my diagnosis, at peace with my end-of-life plans—thanks above all to the American Saunders’ as well as my adopted American family’s understanding, support, and love—and know that you, my readers, are part of my support village. If you don’t even want to know about self-death specifics, this would be a good place to stop reading. Take to heart Kimberley’s remark, “I often wish I had never researched all that I did. Sadly, it was an awful way to learn that ignorance is bliss.” But she nevertheless was honest enough, distressed enough, and brave enough to go on and start this conversation…
Disclaimer: This blog post speaks only about my and my family’s experience in researching self-death possibilities. Let’s get some vocabulary straight: This blog is about my planned, well-considered suicide (also “planned self-death” or “planned suicide”), not one impulsively performed by someone who might possibly be only temporarily depressed or overwhelmed by the complexities of his/her life—if this is your state of mind, please call the national suicide hotline at 800-273-8255, a therapist, or a friend. (And know that I deeply empathize with you if you feel that immediate suicide is you only option. But please get help.) Because I speak here about my and my family’s thoughts and plans about how to end MY life at a time to be determined by criteria I list below, this is not meant as a “how to” manual for people who want to end their lives because of dementia or another terminal illness. DON’T PLAN YOUR OWN DEATH BASED ON THIS POST—FOR THE SAKE OF KEEPING THIS SHORT, I LEAVE OUT SMALL DETAILS (GIVEN IN THE SOURCES I NAME BELOW) THAT I WILL DOUBLE-CHECK SHORTLY BEFORE CARRYING OUT MY PLAN. I have done much research on top of what I present here: I studied books, articles, and material provided by end-of-life support organizations such as, for example, Death with Dignity, Compassion and Choices, Final Exit Network, and Dignitas of Switzerland. THIS POST MERELY DOCUMENTS THE PROCESS THAT MY FAMILY AND I FOLLOWED AND THE MAIN POINTS OF THE INFORMATION THAT WE DISCOVERED. Whatever your wishes are for your death, whether it includes a well-considered suicide or assisted death OR a natural death, make sure you make your end-of-life plans now. IF YOU HAVE DEMENTIA, IN PARTICULAR, MAKE YOUR PLANS RIGHT NOW!
After losing a friend, Taiwanese-American artist Cindy Chang expressed her grief in a simple yet transformative way, writing “Before I die I want to _____.” on the wall of an abandoned New Orleans building. Within 24 hours, the wall was filled with personal aspirations, hopes and goals, everything from “be myself completely” to “see equality for all.”
I start with Kimberley’s direct experience of dementia while helping care for and watching her mother die of Alzheimer’s a year before she wrote to me. During the time of her mother’s decline, she was teaching, her husband was a school principal, overworked as most educators are; they still had two daughters with their own school- and job responsibilities living at home. Finding time to visit her mother was very difficult and she had to make the trips on her own. “It was horrible watching the disease progress for my mother,” she writes. Alzheimer’s typically progresses from early-stage symptoms such as memory loss that disrupts the person’s daily life and ends in the last-stage losses of communication, walking, sitting, awareness of people and surroundings, smiling, and, eventually, swallowing. When her mother eventually died in January 2019, “we were fortunate to [have a family] memorial service prior to the COVID-19 shutdown.” Unfortunately, the family gathering was the source of further bad news: “I learned of not two, as I had originally thought, but five [of my mother’s] family members having had Alzheimer’s.” Some types of dementia, for example, Alzheimer’s and Frontotemporal dementia, is known to run in families.
Scottish painter Norman Gilbert uses art to inspire compassion for dementia patients. His wife, Pat, who had been his muse for 70 years, died of the disease. This is his sketch of her on her deathbed.
Question 1, implicit: Before I go on to Kimberley’s direct question—the one in the title—I would first like to address an implicit question that pervades her letter, one that resides in the emotional/mental turmoil that those of us (diagnosed early enough to understand the implications of the disease) experience when first staring into a future with dementia: “It is so hard to admit,” she writes, “that the fear of getting Alzheimer’s has gotten me extremely down in the past sixteen months.” She cannot sleep. “When you don’t sleep, you end up having more time to stew and fret about things….I wrestle with hopelessness on almost a daily basis….And my husband has had a hard time watching me become someone consumed with fear and anxiety.” She further writes, “I have considered death with dignity, as offered by Switzerland’s Dignitas. Yet, I know others would judge me for such thoughts. I grew up in a Christian home and am struggling to come to terms with my own beliefs about God, a higher power, life, suffering, and death. I am in a physical desert in terms of where I reside and a spiritual desert due to what I fear may be in store for me in the future.” At the root of Kimberley’s distress, it seems, is the question, Is there an ethical position compatible with euthanasia or planned suicide?
Answer 1: Far be it from me to be your or anyone else’s ethical advisor, Kimberley. I can only give you the view that I find ethical, one compatible with my view of a worthwhile life. Surgeon, writer, and public health leader Atul Gawande‘s definition of the concept resonates with me: “A worthwhile life should include joy, acceptance, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Death is as much a reality as birth, growth, maturity and old age.” This view, shared by my family, led to my conclusion that, for me, self-death is the right thing. I do not want my family to keep me alive in a state that I deem to be inherently purposeless and futile. But, you may ask, isn’t it worse to ask your family to help you die? Watch the video below and think again about your answer. Fortunately for me, Peter and the rest of my family love me in such a way that they are willing to give me the great gift of supporting me in my wish to die. The video below shows late-stage dementia patients and the toll that “life at all costs” takes on themselves and their caregivers. There are countless more videos like this one on the internet and I have watched many.
Living with Advanced Dementia—What is it really like for patients and their loved ones? is a 2017 update of a video first published in 2014. The new video focuses on the physical and emotional suffering and burdens experienced by patients and their loved ones. It illustrates why many consider advanced dementia the most cruel, most burdensome, and most prolonged of any terminal illness.
Given my family’s great gift of their support, I wish to die by a planned suicide for which I alone am responsible (no legal jeopardy to them) at a time when my dementia prohibits that which is most important to me: interacting in mutual joy with the people I love. How will I know when the time has come? I have made a list of flags that will indicate that my quality of life is falling below what I regard as worthwhile. Here are a few of them: Do I spend more hours per day consuming care than just living on my own? Have I lost control of my bowels and bladder or can I myself still take care of my toileting? (See blog post “While Hazarding the Hospital for a non-COVID Emergency, Dona Quixote Revisits Her End-of-Life Decisions.) Are my caretakers’ children or jobs or marriages or health or quality of life suffering? Do I still make a positive mark on the world, no matter how modest? For example, do I still receive pleasure by cuddling with a friend or child or grandchild? Is it a pleasure for them or am I inappropriate and scary?
My planned suicide has no fixed timeline, other than that I will perform it while I am still physically and mentally able. Instead of depressing me, this fact makes me feel like a minor potentate who imagines she has more powers that she probably has. Each day when my life is still wonderful feels like a gift and a triumph. Like G. K Chesterton demonstrates in this excerpt of “A Ballad of Suicide,” I am still the boss of when my life will end!
The gallows in my garden, people say,
Is new and neat and adequately tall;
I tie the noose on in a knowing way
As one that knots his necktie for a ball;
But just as all the neighbours—on the wall—
Are drawing a long breath to shout “Hurray!”
The strangest whim has seized me. . . . After all
I think I will not hang myself to-day.
To-morrow is the time I get my pay—
- Here is a tool of the kind our family created for ourselves to think about a range of end-of life choices—the choices include the possibility of a form of planned suicide or the possibility of dying a “natural” death. This kind of document became widely available (also online) from several different end-of-life-planning advocacy organizations after we had made our first plans. Whether you are thinking of planned suicide or not, you will find it helpful to discuss end-of-life issues with your family, other people you love, your doctor, your children, your therapist, or whomever else you look to for emotional support. From Compassion and Choices, “My End-of-Life Decisions: An Advance Planning Guide and Toolkit.”
- Here is an article that brings up ethical issues both for and against pre-planned suicide/assisted death in dementia cases. “Alzheimer disease and pre-emptive suicide, (Dena S Davis, Journal of Medical Ethics).
- I want to say a word about the term “dignity” as used by Dignitas and in other situations involving suicide or assisted death. I dislike this use of the word, because it implies that a dignified death for someone with dementia can only be obtained in assisted suicide. An counterexample from my experience is how my mother was lovingly cared for by my sisters Lana and Tertia all through her years in the nursing home; they were there, together with other other family members, when she died a natural death. What is more dignified than dying surrounded with such love and care? Here is a short video arguing that natural dying can be and is often infused with dignity. Beyond Assisted Dying: Dignity, Autonomy and the Human Condition.
Thinking of my own end would be gloomy indeed if my family and I could not resort to black humor.
Question 2: Kimberley writes, “I just now read ‘While Hazarding the Hospital for a non-COVID Emergency, Dona Quixote Revisits Her End-of-Life Decisions’ and rewatched the video about the plans you have made with the help and support of a lawyer and your family. I wonder how you have ‘figured out a way…to obtain a legal assisted death when my quality of life drops down below a level that I find acceptable.’ Are you saying you now have figured out a way in which you can access legal assisted death in the United States?”
Answer 2: The answer to your question is that for those of us who have dementia and live in the United States, there is currently no form of legal assisted death. In a subsequent answer, I will discuss my solution to this problem. At the present the only possible option for someone with dementia is to go to another country and, as your research showed, Kimberley the only feasible one (if you have a lot of money and family support) is Switzerland’s Dignitas. Here are some details about them:
First, you need to become a member of Dignitas; anyone can join if they pay an annual fee of 80 Swiss francs (£47). When you are ready to die, you need to send in copies of your medical records, a letter explaining why things have become intolerable and £1,860. These files are dispatched to one of Dignitas‘s affiliated doctors, who considers on the basis of the medical history whether or not he would be ready to write a prescription for the fatal dose. If he agrees in principle, then a “green light” is given to the member, and they can contact staff at the Dignitas headquarters, who will schedule a date and offer advice on hotels. Once they arrive in Zurich, the individual must pay £620 for two appointments with the doctor (to check their records and prescribe the drugs) and a further £1,860 to pay for two Dignitas staff members to organise and witness the death. Those who cannot afford the fees may pay less (The Guardian, 2009).
The information above is from 2009, but it gives one the flavor of the money required. The 2021 updated amount for assisted suicide via Dignitas—as a lump sum—is between €4,000 ($5,079.62) and €7,000 ($9,029). Plus, of course, plane tickets to Switzerland for you and a family member, since you will most likely not be able to make the trip alone when your dementia is advanced, even though you might still be rational. And here is the big caveat: “Members of Dignitas who wish for an assisted suicide have to be of sound judgement, themselves able to do the last act which brings about death, and submit a formal request including a letter explaining their wish to die and medical reports showing diagnosis and treatments tried.” In other words, yes, you must act before you lose the mental ability to make a reasoned decision to die and before you lose the physical ability to ingest or otherwise take the lethal medication. Sadly, this means you must act before you might wish to—there is often only a brief period of time once you’re diagnosed to fully meet both these criteria (I acknowledge Janis Landis of the Final Exit Network for helping me sort through this information. More about Final Exit later). My answer, therefore, Kimberley, is that there is no legal options in the United States for an assisted death and that “suicide tourism” is only available for those among us with family support and enough money to make the trip and who are still of sound mind. While Peter and I, years ago, made this option a part of our end-of-life plans and put away some money towards it, it now seems unlikely that we will follow this path (even should the pandemic be under control) because of how much more things cost at the moment and also because travel and being in unkown surroundings substantially increase my confusion and downgrade my ability to act rationally.
Image source: Medical Daily, “Suicide Tourism: Traveling for the Right to Die, and the Ethical and Legal Dilemmas that Come With It.”
Question 3: If an assisted death is not available to people with dementia in the US, how then can such a person die in the US at her chosen time? You ask, “I was wondering if you would be able to share further in regards to [this dilemma].”
Answer 3: To have a legal assisted suicide in those US states that allow it, you must be declared by one or more doctors to have six months or less to live. The only neurodegenerative condition for which this determination can apparently be made is ALS, or Lou Gehrig’s disease. See this interesting article that Peter found in Bloomberg Businessweek about a woman who helped her father with ALS die legally with the help of physician-assisted suicide in Maine. The article also gives a summary of US states that currently offer legal assisted death (“Death with Dignity: How I helped my Dad Die.“) I have long advocated and still do—this post is part of my advocacy—that the right to an assisted death should be extended to people with dementia in the US, but our laws are very far from it, even though the only difference between dementia and other terminal diseases is that—in cancer, for example—a death date can be determined within a six-month period, whereas with dementia someone can linger in the last stage (Stage 7) for up to 17 years, without the ability to understand, speak, control their bladder and anal sphincter, or recognize people who love them. That, to me, seems like cruel discrimination between so-called “physical” and “mental” diseases. Dementia IS physical. Look at the shape of a dementia brain in the images below, and tell me how that the damage is less physical than an MRI of a cancer tumor.
Left, “Neuroimaging markers of cerebral small vessel disease” (what I have); Right, “Alzheimer’s Disease Fact Sheet“
Key to left image: (A) Recent small subcortical infarct on diffusion weighted imaging (arrow). (B) Lacune on fluid-attenuated inversion recovery imaging (FLAIR) (arrow). (C) White matter hyperintensity on FLAIR imaging (arrows). (D) Perivascular spaces on T1-weighted imaging (arrows). (E) Deep microbleeds on gradient recalled echo (GRE) T2 weighted imaging (arrows). (F) Lobar cerebral microbleeds on GRE imaging (arrows).
Question 4: Given the fact that there is currently no form of legal assisted death in our country, what, then, are you going to do, Gerda?
Answer 4: I am making alternative plans. In other words, I will perform a planned suicide rather than undergo an assisted death. To make my planned suicide safe for my family—that is, to cause them no legal jeopardy—I have to do it before my brain has deteriorated to the point where I can no longer grasp and perform the actions that my chosen method requires. I must also still have the physical ability to ingest medication or otherwise perform the actions of my method. Given that I have dementia, as compared to illnesses regarded as “worthy” of assisted death in the US, I will most likely have to die far earlier than six months from the day I might die naturally. Possibly years earlier. It is hard to catch the right moment. One day you can act, next day you can’t.
In all the alternative plans I am considering, I am determined to safeguard my family from legal jeopardy. We have agreed that I ALONE WILL PERFORM ALL OF THE ACTIONS OF OUR CHOSEN SUICIDE METHOD and MAKE SURE THAT MY WISHES ARE CLEARLY DOCUMENTED AND STATED IN LANGUAGE DEEMED ACCEPTABLE UNDER THE LAW. Should I have planned to perform my suicide alone and in secret, I of course would not need not worry about jeopardizing my family—but I know that would severely traumatize them. Even a note explaining my choice would be extremely hurtful to them compared to me having the openness and confidence in their love and trust as I approach death. Instead, Peter, my family, and I have spent many hours over almost 10 years to get our plans in place and to update them when new information becomes available. I know I am very, very lucky to have family support in this difficult decision.
All of our family’s alternative plans/back-up plans—and many more—can be found in the book Final Exit by Derek Humphrey, available from his website and elsewhere. We also incorporated info from other organizations that support assisted suicide and/or self-death, which I list under “Back-up Plan C” below.)
The back-up plans our family has discussed over the years
Back-up Plan A: My daughter-in-law, Cheryl, sent me an article about VSED, or Voluntarily Stopping Eating and Drinking. This link explains the term. There are several cases of people with dementia who managed to die in this way, with the help of their family who reminded them of their goal when they forgot and asked for food. See an hour-long discussion of VSED, which includes the video of a woman undergoing the process. Good information—even though I have researched VSED for years, during the writing of this post this I found the exact language to show in my documentation that VSED was a choice I made while still rational. (I found the correct language by, first, consulting New York City’s ADVANCE DIRECTIVE FOR RECEIVING ORAL FOODS AND FLUIDS IN THE EVENT OF DEMENTIA and choosing the wording of column 1 on p.4 and, second, adding to that the wording that I found 32 minutes into the above- mentioned VSED video.) VSED is legal in all states, but is sometimes resisted in religious- or other care environments that morally object to it so, if I should have to use a care center or hospice, I would check about their position before using the facility or hospice service. With a well-written advance directive, my family will—in a care center or hospice—be able to intervene on my behalf even if I have become unable to say for myself that I don’t want to be fed. While Peter and my family support me in this choice, it was something I found hard to ask: like many families, we think of family togetherness as involving food. It seems cruel to ask the people you love to withhold food and drink from you, even if you have asked them to do so. Nevertheless, if VSED seems to be the best option at the time I want to die, I will ask this difficult gift from my family. See an example of a VSED advance directive from End of Life Choices New York, on p.5 of the document in the link.
Back-up Plan B: I hoard prescription drugs left over from surgeries etc. and plan to take an overdose. I compared my stash to Derek Humphry’s Final Exit and another informed sources for the best drugs to use and the dose, and my supply does not yet satisfactorily comply with those recommendations. Humphry recommends that once you get drowsy after taking the drugs, you additionally place a plastic bag over your head to make sure that you will die even if all the drugs do is to make you unconscious. You have to prepare all your materials and practice your plastic bag moves ahead of time. To ensure that my family does not get into legal trouble, I plan to set up a video camera ahead of time to show that I am doing all the actions by myself.
Back-up Plan C
I will have a planned suicide by oxygen deprivation through breathing in an inert gas such as Helium; or use Nitrogen, which is not an inert gas but nevertheless exhibits properties like a completely inert gas. I will breathe in the gas while wearing a plastic bag or hood—sealed off from room air—over my head. I will do everything needed for this method, including buying or ordering the gas online or in my own name. I have learned that one should not buy the gas long ahead of time—in order not to gradually lose gas pressure, one should by it no more than 10 days before you plan to use it. We consulted Derek Humphry’s Final Exit and other informed sources for more information (listed under “Check out more information” below). I will practice my actions ahead of time. To ensure that my family is free of legal jeopardy, I plan to take a video of me doing all actions myself. This method is currently the one that Peter and I think is most feasible for ourselves.
Helpful sources that we used:
- Final Exit news flash, “The Nitrogen Alternative“
- Article in Journal of Medical Ethics, March 2010, “Assisted suicide by oxygen deprivation with helium at a Swiss right-to-die organisation” (nitrogen is currently used instead of helium but the effects are similar). THE CASE STUDIES DERIVED FROM VIDEOS OF ACTUAL DEATHS WERE HELPUL in showing the visible effects of the gas after inhalation, for example that—when the hood is fitted leak-free—consciousness usually occurs in under a minute and death as soon as 10 minutes from the start. They also reveal that is common for one’s body to have muscle spasms for a few minutes after one loses consciousness.
- Article in American Journal of Forensic Medical Pathology 2010;XX: 000–000, “Suicide by Asphyxiation Due to Helium Inhalation
- 2020 edition of Humphrey’s Final Exit, which includes new information about using nitrogen.