Most of the people I talk to about hastening their own death have supportive family and friends, but many do not. This latter group includes maybe 10% of those I talk with at right-to-die presentations, at community meetings, and through my work with the Final Exit Network. I invite readers to think through Jane’s situation provided in the composite case study I present below, and offer comments and suggestions for resolving her dilemma.
Those without supportive family and friends include people with metastatic cancer, irreversible neurological conditions, and multiple medical problems that have taken away any enjoyment and quality of life as determined by them. They no longer want to continue living because they know that their condition will only worsen, and for them it is already beyond bad. There is no realistic hope that their lives will improve. Most of the time, family members and friends are able to see the suffering in their loved one’s life and understand a desire to end the suffering. But this is not always the case. The following case study is based on several people with whom I have had discussions about hastening death. Names, places, circumstances, and health conditions have been altered to protect privacy, but illustrate a very real problem faced by many older Americans who are experiencing irreversible declining health.
Jane lives in California and receives health care services from a large Catholic-owned medical system, which I will refer to as Redemption Health Services (hereafter “Redemption™”). Some of the physicians at Redemption™, with whom she has talked, have refused to discuss her options under California’s End of Life Option Act, a voluntary assisted death (VAD) law similar to Oregon’s Death With Dignity Act. They have, also, refused to take her concerns seriously, as have her adult children. Mental health staff at Redemption™ have actively coaxed from her statements that she wanted to end her life, which were used to detain her for mental health observation under the criterion that she is a danger to herself, as provided in California law.
California has a reputation for having modern, evidence-based, enlightened, and creative laws, especially in health and welfare areas. Yet, its flawed involuntary commitment statute is typical of many now in place throughout the US.
Section 5150 of the California Welfare and Institutions Code permits the involuntary detention of an adult who is experiencing a mental health crisis for a 72- hour psychiatric hospitalization if the person is believed to be a danger to others, or to herself or himself. The Code provides that
… an application in writing stating the circumstances under which the person’s condition was called to the attention of the officer, member of the attending staff, or professional person, and stating that the officer, member of the attending staff, or professional person has probable cause to believe that the person is, as a result of mental disorder, a danger to others, or to himself or herself, or gravely disabled.
Jane had a counseling session with a psychologist at Redemption™, during which she explained her reasons for wanting to hasten her death. She has suffered from osteoarthritis for over twenty years, without significant relief from drugs, surgeries, and therapy; she has chronic back pain even after four surgeries to repair ruptured vertebrae, fuse vertebrae, and enlarge her spinal canal; she has chronic and unrelenting constipation that makes her feel miserable to the extent she does not enjoy eating (or doing anything); a heart arrhythmia; diabetes; macular degeneration; and declining cognitive capacity consistent with the onset of Alzheimer’s. She uses a cane for balance problems. At age 87, Jane feels that she is no longer able to have a quality of life that makes continuing to live worthwhile.
After expressing her thinking about her life and her desire to have it over with, the psychologist determined that she was a danger to herself. He completed Form MH 302, Application for 72 Hour Detention for Evaluation and Treatment, in order to have Jane held in the psychiatric ward at Redemption™ for observation and further evaluation. The psychologist was a person authorized by the California Welfare and Institutions Code to approve such detentions.
At first, Jane was shocked by the involuntary detention. After discussions with more mental health professionals at the Redemption™ Hospital, during which Jane was shamed for seriously contemplating suicide, Jane understood that she needed to stop saying that she wanted to die. She assured staff that she would not hasten her own death if she was released. After 48 hours, Jane was allowed to return to the retirement center where she has an apartment.
Eight days later, Jane again decided she had had enough of her many medical problems. She was determined not to live to become 88. She had had a good life until the last few years, with three adult children, all of whom were near the end of their respective successful careers in engineering, real estate, and raising a family. Jane’s husband, who died fifteen years earlier, had left her without any financial problems. She had everything any person could want or expect, except health.
In spite of her statements to the mental health staff at Redemption™, one evening she took a large quantity of an assortment of drugs left over from previous treatments for pain and other conditions. When someone at the retirement center checked on her the next morning, she was groggy and remorseful that her attempt to end her life had been unsuccessful.
Her children were called, and two of them arrived at her apartment within an hour. They disagreed with Jane’s decision to hasten her death because they thought it was wrong, based on their religious views. When Jane was able to walk on her own, they took her back to Redemption™ for a checkup. During that process, mental health staff were consulted and Jane was again held for 72 hours of observation. On the third day of her detention, Jane promised the psychologist that she would not do anything as foolish as take pills again to try to end her life. After repeating this promise several times and expressing remorse for what she had done, she was released when the 72-hour hold expired.
Jane is exhausted from living with her medical problems for so many years. She has had a good life, but has begun seeing its eventual end. It is not an end she wants to endure. She doesn’t want to be confined to a nursing home until she draws her last breath. She doesn’t want to live on pain killers. She doesn’t want further surgery for bad knees, which has been suggested to her. Playing bridge, compiling her family’s history using her computer, cooking once a week with friends at the retirement facility, and watching her grandchildren grow up are not enough to offset the suffering of her medical problems and the slow advance of a progressively debilitating death that she sees in her future. In sum, she has an unacceptable quality of life with no remedies for her many medical conditions.
Please contribute your ideas and thoughts about Jane’s plight:
Is Jane’s wish to hasten her death irrational?
Is hastening her death warranted?
What are her options?
How can she deal with her family?
How can she handle the Catholic health care system in which she participates?
Is it possible for Jane to have the good death she wants, rather than the one she dreads?
What would you say to Jane?
Clearly she needs to find a new healthcare system. If she cannot have a rational discussion with her healthcare provider without punishment, she needs to find a new one. This article highlights the need to have your end-of-life plans determined far before you are very ill. If your children do not agree with your decisions after serious discussion you need to explicitly exclude them from decision-making on your behalf – in writing, but,as you point out, who then? People with resources can hire patient advocates.
It looks to me that Jane can hire an outside attorney. If she has the money, she should do so in secret, if that is possible. The attorney should convince her that he understands the issues and that he, from his own convictions, agrees that wanting to end you life is an individual’s right.
No, Jane’s wish to end her life is not irrational.
Yes, hastening her death is warranted
Options: Perhaps contacting Final Exit? Get secular medical care?
Dealing with family: Perhaps some are more open minded? Escape somehow? Not much.
Leave the Catholic imprisonment and torture system.
I would assure Jane that she is not alone, and that there are people who believe in her right to decide the manner of her death.
As Margaret Atwood said in her interview with Bill Moyer on PBS, America is a theocracy, it is difficult to escape. Jane should find a friend in an attorney that is able and wiling to navigate the escape plan.
Wow. You have described exactly the scenario I am determined to avoid.
Of course she is rational. Why does a person have to be “rational?” What business is it of anyone whether a person’s desire to exit meets some external criterion of “rationality?” The definition of “rational” is cultural. Her life, her body, her decision.
Self-deliverance at any time in one’s life, no matter the reason, is a personal decision. I get really, really tired of the fear of death in our culture. It isn’t an end; it’s a Graduation out of the Earth Life School back to the Wonder whence we came. Dropping the body is something to be gladly anticipated, not feared. There is no punishment, no Hell, no Heaven, just ourselves returning Home, spiritual beings ending a physical sojourn. Read Robert A. Monroe’s books.
I have no idea how to deal with her family. Religious people of that ilk have closed minds, and their fear of death is extremely unlikely to change in time to help Jane. They have somehow convinced themselves that Jane will be punished for “suicide” while believing at the same time that they will not be punished for forcing her to undergo medical torture. Fascinating but extremely common.
If at all possible she needs to get out of the Catholic place and to one that has a non-religious structure. That may be impossible because of her family. Perhaps the right lawyer could help with that. If she is “sane” she should be able to choose where to live. Do her adult children have power of attorney? If not then she should be able to move at will.
I don’t see any way for Jane to exit as she wishes, unless she can get out of the religious facility she is in and find a situation where a doctor is willing to help, or if she can go on a “vacation” and manage to be alone in a hotel long enough for Final Exit to help her. However, with the family unwilling, FEN would be unlikely to take that on with the family backlash that would occur. The nitrogen tank is heavy enough that she would be unable to move it without help.
I agree with finding an appropriate attorney but that can be a dangerous job if she contacts the wrong one and ends up once again imprisoned as a danger to herself.
I assume that if she tries the refusal of food and water method, she will be force fed. But it might wake up her adult children to a certain extent. Would they want to see their beloved mother force fed? Could a lawyer prevent that action? Once again, do her adult children have power of attorney?
This is poignant for me because my mother’s name was Jane and she was in a similar situation, not in a religious facility but unable to take action; macular degeneration and bad osteoarthritis. She is the one who asked me to read the Final Exit book to her because she was too blind at that point to read it herself. She was lucky in that she had a sudden natural death before she was forced to go into assisted living, but she had badly wanted to exit for many years before that.
Jane is ready to die NOW. Getting a sympathetic attorney or doctor will not help her under the current law in the USA. If I were Jane, I would book myself a one-way flight to Switzerland. The three organizations there will help citizens from any country to a rational death even if they are not six-months terminal. I don’t understand how anyone reading this scenario could possibly think that the hypothetical Jane has any other remaining option! Final Exit Network could send out an email to members requesting a companion for the trip with no repercussions to the organization itself.
First off…Religious affiliations have no say in someone’s Right to how they die. And to say It’s not’s God will is not true…If One were suffering and also if One were to be already in the dying process..God would not want the suffering to continue and understands and Loves us. Just as in Medicine, we do everything to make one comfortable in Life, it is the same in Death, for Death is a part of Life. Life continues on afterwards~~
Not much more to say that hasn’t been said. Lawyer! Change Medical Facility. Maybe even her own Apt. with 24/7 care-giving. But all this will not free Jane from her condition. It does not sound as if she has the physical ability to implement a non-violent suicide plan, like building an inert gas machine. Because Jane lacks a 6-month prognosis no MD can legally prescribe lethal medication and she apparently can no longer travel abroad to obtain it from veterinarians. It’s likely that, if she eventually gets a 6-month prognosis, her dementia will have progressed too far for an MD to prescribe. Perhaps Jane has enough time and money to arrange a peaceful exit in Switzerland, but I’ve read that’s not always easy either. She might try moving to Belgium, Netherlands or Switzerland and seek help dying there, but given her age and condition, that’s a long-shot. She certainly can’t manage that own her own and there’s no hint in the case scenario that anyone who loves her would help to that degree.
Jane may be plain stuck with her suffering, demonstrating that those of us who are intent on a peaceful exit under our own control may need to make that exit while we still have independent ability to do so. Which, sadly, may be well before we are really ready.
Jane should call the Bay Area End of Life Options Clinic, see if she qualifies for aid in dying under the CA EOLA, and if so pursue a peaceful death via aid in dying with the assistance of the outstanding clinicians who provide such care in that clinic.
One of Jane’s challenges is the lack of support of her family. Final Exit Network presentations stress the importance of meeting with them and sending them written declarations to be sure they accept your end-of-life choices. They don’t have to agree. But they must accept and honor your choices. If one or more of them are unwilling or unable to support you, they must be prevented from blocking you. Dealing with this issue directly and clearly in your Advanced Directive and Medical Power of Attourney documents is helpful. You don’t want anyone in a position to oppose your wishes when you are unable to defend them yourself.
Jane wishes to end her life because it is no longer worth living and holds only the probability of becoming worse. This is perfectly rational thinking; quit while you’re ahead instead of surely losing everything. The irrational part of Jane’s thinking is her wanting to change her family’s minds and garner their support – ain’t gonna happen! – and her continuing dependence on a religion-based system that is antithetical to her rights. Is hastening her death warranted? No-one has the right to ask, or answer that question but Jane, herself. Hers is the only opinion that counts or should be considered. Because Jane is very fortunate in having financial means, her options are many and include choosing to NOT deal with her family or the Catholic health system on their terms. She could independently rent a private apartment, contract with an agency to equip it to her specifications, hire a car service to take her there, and end her life without interference. She could also travel to Switzerland or Belgium. All it takes is money and not talking to anyone else about her plan. A good death is possible with the inert gas method or by sodium pentobarbital and the fact is that those with the financial wherewithal can make those arrangements for themselves if and when they want. If I could tell Jane anything it would be to stop wanting the impossible from family, church and those in her current custodial situation and start acting on her own behalf before it’s too late.
I suggest this because it would probably work but mainly to provoke further discussion. Why doesn’t Jane order the chemical salt currently being studied by NuTech, measure the required amount, make a solution and drink it when she wants to depart? The stuff is readily available though Amazon and they deliver right to the door.
Jerry
Kathryn, the scenario indicates that Jane does not have the requisite 6 months or less prognosis. Yet, you are suggesting one of your attorneys might be able to help her. I’m puzzled. Are there nuances we should be aware of?
I would like to know more this salt solution Dr. MEtz mentioned. I am 87, in good health, as is my husband, but who knows what may happen and I want to know all my options.
Jane’s obstacles are many and varied and seemed to justify my suggestion of an unusual solution, one she could obtain without going shopping or depending on others. The chemical I suggested has a proven track record when used in animals but until recently there was no record of use by a human deliberately seeking death.
A courageous terminally-ill woman volunteered to use it and invited one of our doctors to witness her departure. The doctor was very impressed,
but the fact remains we have only one case upon which to draw conclusions and it is risky to assume the same result would occur every time.
That is one reason I will not identify the substance. Furthermore I do not want to feel responsible if a lovesick teenager somewhere swallows the stuff, seeking a
permanent solution to a temporary problem. My third reason for not promoting this substance in a public forum is that the person asking for information is healthy.
I do sympathize, Ginger, with your wish to have an “escape hatch” available and I have shared the necessary information on occasion in an atmosphere of reliable confidentiality but never in public for reasons already mentioned. If further study shows consistent results the secret will be too good to keep, the cat will be out
of the bag, and everybody will know … but we’re not there yet.
Thank you for your answer. I, too, would be worried if anyone with a temporary problem considered suicide the only option. I am glad FEN is available for us.
What would I say to Jane?
1) It was wrong anyone to shame you for trying to commit suicide. It is nothing to be embarrassed or ashamed about. You should talk with someone who can help you take stock of your life and explore how you can how you can help others in your remaining years. You have so much to offer others. Your grandchildren need you to be a part of their lives as they begin their careers, marry, and start families of their own. (Wouldn’t tell Jane this, but a competent mental health professional could also evaluate and treat her for depression, if indicated.)
2) Suggest she seek health care from a new organization. In addition to the benefit of being one that may have doctors that would work with her about using the California law should she become terminally ill, it would be a fresh start for her medically. Just a review of her medications might find that their side effects contribute to her constipation, for example. Or there might be a new med that could help her pain.
3) Make sure she has her desires for medical treatment/non-treatment clearly documented in a living will and health care power of attorney. Furthermore, she must appoint a health care power of attorney who will carry out her stated requests.
4) Encourage her to get whatever exercise she can, per her doctor’s recommendations. Swimming and aqua aerobics are easy on the joints. Anything that gets her up and moving cannot hurt and might help – both her body and her mind.
Is Jane’s wish to end her life irrational? From her standpoint, no. From a more objective standpoint, yes. She sounds like she *could* be too self-absorbed and dwells on her own problems so much that she misses the fact to see that she still is a valuable person to her family and potentially to others. Yes, she has serious chronic health problems, but she has no financial difficulties, she is ambulatory, and she has a loving family. Many, many other people twenty, thirty, or even forty years younger than Jane would long for a life like hers.