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Start the most difficult conversation American isn’t having- the conversation about our end of life preferences

Suicide And Terminal Disease: A Personal Choice And Rational Approach

The views expressed in this column are those solely of the author

My spouse and I have an ongoing conversation- really more of an argument- about one end of life scenario. I have stated on several occasions that if I were struck by a disease with less than 50 percent chance of survival and a prolonged and painful course of treatment, then I would choose not to receive treatment. Instead, if I were able, I would do a lot of traveling, visiting with friends, and then die comfortably.

I say this as a healthy, able-bodied person. He is quick to point out that I cannot know how I would feel if I were ever in such a situation. I grant him that. However, I have seen enough people undergoing such treatment, talked to enough families about dying, have a strong sense of the distribution of societal resources and have no dependents. I also have good insurance, good social support, and an above average understanding of the culture and language of medicine.

I do not bring this up because of the recent suicide of Robin Williams, one that may have been spurred by a diagnosis of Parkinson’s. Recently, I read the story of Gillian Bennett, a retired clinical psychotherapist and wife of a philosopher. At age 85, she took her own life rather than suffer the increasing indignities of dementia. On a sunny day before noon in British Columbia, Bennett and her husband brought a foam mattress to a hillside with a beautiful view. Laying next to her husband, Bennett ingested whiskey and Nembutal and drifted off to permanent sleep. Bennett made her case for her suicide on a website she created, deadatnoon.com.

On this website, Bennett discusses her experience of living with dementia for three years, the options for future care, the cost to her family and society, the effect of the disease on her family, and the societal burdens of an increasingly aged population. She urges everyone above the age of 50 to complete a “living will.” Bennett says that making such a document should be compulsory. She also says she believes the “medical profession, the Law, and the Church will challenge and fight any transformative change.”

Bennett ends her four-page note with loving thoughts about her life and family. She details how she plans to die and states her husband had no part in her death (an important point guarding the illegality of assisting suicide in her province). Although she would have loved to have had her children with her when she dies, she has ordered them far away- so no legal suspicion should fall upon them. Her family created a video after her death, telling this story and discussing their mother’s good death.

There are many who say Bennett was a coward, selfish, depressed and made a decision that should be made only by a deity. Criticisms will also be directed toward her husband and family. I think she was brave. This was not a spur-of-the-moment choice. She thought through her quality of life, her future life, its effects on those around her, and made the choice that was right for her. This does not mean that people should be encouraged to make a choice of rational suicide when faced with terminal illness. This does not mean that as a society, we should put people in a position in which they feel suicide is the best (or only) option due to a lack of available, affordable care. This does not mean that everyone in the same position should make this decision. This does mean it was the right decision for Bennett.

Courtesy WikiMedia Commons
Courtesy WikiMedia Commons

End of life decisions are intimate and personal. They should be made in long conversations with loved ones and should be consistent with beliefs and life choices. They should not be coerced. Many of us will have the unfortunate reality of having to face similar decisions. The thought processes of my current able-bodied, able-minded self may change. Perhaps these suicides are a call to change the way we view coping with tragic disease, or a call to change how we treat those faced with horrible choices. I believe rational suicide can be an acceptable alternative for those like Bennett who are not clinically depressed, who had carefully considered choices for a long period of time, and who had the backing of family. A good death was one on her terms, on her timeline, by her hand, and while holding the hand of the love of her life.

2 Thoughts on “Suicide And Terminal Disease: A Personal Choice And Rational Approach”

  1. Thank you for this thoughtful and thought-provoking reflection. Like you, I recently read news of Gillian Bennett’s decision to take her own life and I’ve read her statement on deadatnoon.com, the web site she created and asked be made public after her death. Her story, her family’s video about it, and her own statement are moving and compelling. I suspect they will be find their way to the Legislative Office Building in my home state of Connecticut this fall, when legislators are expected to introduce, for the third year in a row, a bill that seeks to legalize physician-assisted suicide.

    I presented testimony during each of the previous legislative debates. I did not argue either for or against assisted suicide, however; instead I used the debate as an opportunity to advocate for much greater awareness of the compassionate end-of-life care option that exists already: hospice care. (http://bit.ly/15auWSz)

    It may not be the best option for everybody, but I fervently believe – based on my own experience of it – that hospice is a wonderful option for far too many people who are not taking advantage of it. They are not opting for hospice care either because they don’t know what it is or think it is something it isn’t, or because their physicians are loath to make a referral to hospice; and the referrals aren’t happening because too many physicians are either ill-trained to have that difficult conversation with a patient and her family or because they believe that acknowledging the inevitability or imminence of death represents defeat.

    No matter the reason, too many terminally ill patients and their loved ones find themselves believing suicide, whether assisted or not, is the only compassionate option for peaceful dying on their own terms. It is not. (http://bit.ly/1qaY1HI)

    And too many terminally ill patients probably become overly preoccupied with the prospect of dying rather than focusing on the joyful living that is still possible. A terminal diagnosis does not terminate living. My 74-year-old mother was an inspiring example of that. And hospice caregivers (a whole team of them) helped her live fully and joyfully before they helped her die – at home, at peace, without pain, and with gratitude for the love and life she had experienced during her last year. She, and we, had injected living into her dying.

    I am encouraged that blogs like yours, stories like Gillian Bennett’s, initiatives such as The Conversation Project, and organizations like the Center to Advance Palliative Care are causing more Americans to find the courage to talk about death and the wisdom to prepare for it. I hope hospice will find its way into more of these discussions.

    Embracing hospice does not mean abandoning hope.

  2. Linda, thank you for that very thoughtful response and for your advocacy for making a compassionate and beautiful end-of-life. I agree with you that hospice is truly amazing and helps make the final days/months/(sometimes) years of life to be meaningful, pain-free, and comforting. I also agree that it is a national tragedy that physicians do not refer patients to hospice sooner. And I suspect you are correct that many people consider suicide to deal with physical pain that may be able to alleviated through proper medication (another national tragedy–the fear of breaking the law, government oversight, and the war on drugs that has led to a reluctance and difficulty in prescribing drug medication for those in intractable pain.

    I think the Bennett case is different. Yes, she would have died from her disease, someday. She would not have qualified for hospice care because her disease is not immediately terminal. Bennett also knew of her options, and even though hospice could provide wonderful care for her body, she feared the loss of her mind most of all and that, is something that hospice or any form of care could do anything about.

    The idea that suicide is a poor choice, or should only be looked at secondarily to other options, comes from a long cultural history that stigmatizes suicide. It is very difficult on the survivors in many cases, when it is unexpected. That is not what happened in the Bennett case–the entire family was part of the process. For them, it was the right choice: They owned it and made it beautiful. I think that suicide (solo or assisted) is another option in the toolbox.

    Again, I applaud your support for “the good death” and appreciate having thoughful and compassionate voices like yours in the conversation.

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