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Taking Control of Death

Science isn’t the only game in town. Literature can teach us things about the world that science can’t. It can give us vicarious experience and insight into other minds. Two recently published novels illuminate why perfectly rational people might reject the help of scientific medicine and prefer to die a little sooner but to die on their own terms.

In Finding Frances, by Janice M. Van Dyck, an elderly woman with COPD and heart disease has had a gradual decrease in her quality of life and has been ready to die for some time. She believes in God and an afterlife and is not afraid of dying. When she needs emergency surgery to remove a section of infarcted bowel, she wants to refuse it, but accepts mainly because she is told that otherwise she will be sent home where insurance won’t cover her care and her husband’s savings will be depleted (which isn’t really true). The first surgery leads to complications and she is offered a second operation with a 25% chance of success. She refuses despite the strong urgings of her health care providers and her entire family. She is given hospice care, stops eating, and eventually dies. The book chronicles the course of the death process in hospice, giving a feel for what the experience is like and how it impacts family members.

In The Leisure Seeker, by Michael Zadoorian, Ella and John, a couple in their 80s, set out on one last road trip in their RV, to follow the entire length of old Route 66 and revisit Disneyland. Their doctors and their children try desperately to dissuade them. He has Alzheimer’s and she has cancer and other health problems: between them they have one functional brain and one functional body. She has refused surgery and chemotherapy, uses a walker, and is dependent on pain pills. He has made her promise that she will never put him in a nursing home. After many mishaps, misunderstandings and misadventures, they manage to reach Disneyland. Then she finds a way to end both their lives at the same time so neither will be left alone. She is a feisty, colorful character and the book is hilarious despite its sad subject. Ella tells us what it feels like to become old and decrepit, to be handicapped and live in pain, and to live with a demented loved one who must constantly be watched and doesn’t always remember who you are. And how one can find joy in the small pleasures of life despite all those problems.

I don’t think I would make the same choices in their situation, but I can understand their choices and empathize with them. They didn’t give up hope or turn to false hopes, but they created their own realistic hope — the hope of a “good death.” They rejected dependence on medical care, took control of their lives, and met death on their own terms. I have to respect their autonomy and admire their courage.

As Ella says at the end of The Leisure Seeker after she plans her own and her husband’s death by carbon monoxide poisoning:

This is not always what love means, but this is what it means for us today. It is not your place to say.

Posted in: Book & movie reviews, Cancer, Medical Ethics

Leave a Comment (61) ↓

61 thoughts on “Taking Control of Death

  1. Alaskan says:

    Beautiful.

  2. DLC says:

    Sorry, but. there just is no “Good” death.
    There is only “less horrible”
    “More merciful” or even “cleaner”.
    But sometimes those deaths are what you can get, and better than the alternatives.

  3. DLC “# DLCon 06 Apr 2010 at 6:32 am

    Sorry, but. there just is no “Good” death.
    There is only “less horrible”

    Oh well, one could say the same of life too.

  4. DevoutCatalyst says:

    So many different scenarios, so many different ways to “check out”. My parents both rejected hospice and chose nursing home.

  5. Dawn says:

    Similar to Praise the Human Season, where the characters go off on a trip (the wife, Anne, is dying of breast cancer) and after she dies, her husband arranges for their pet cat to be cared for, for her body to be buried, then writes a note giving his name, burial information, and home. He then goes running on a track (he has a heart condition) until he dies also.

    My parents, my husband and I all have discussed how we wish to die. No extraordinary measures. No artificial care. Death is not the enemy.

  6. I like the title of this article. The thing that I learned from my father’s death was that it is important to come up with a realistic plan for your older years and death. When my father was 75 (a number of years after my mother passed) he decided to move to a rural area that was a minimum of 14 hours drive or a very expensive flight away from any of his children. He did this to be nearer to a married woman (Pat) he was seeing. The closest hospital was more than an hour from his house. There was a lack of doctor’s or medical care nearby. The house was very run down. He had no close neighbors and wouldn’t make friends with the distant ones. Pat lived an hour away, had many family obligations and was nursing her sick husband.

    A number of years later, when my father was diagnosed with late stage cancer, his plan was to stay in his house and have Pat care for him (her husband had passed about a year before) It was clear that she was neither physically or emotionally able to do this. It hadn’t been that kind of relationship.

    Due to work and parenting obligations. None of us were able to move to another state to take care of my father, so we had to move him to stay with my sister. This was away from Pat and away from his property, which made him miserable on top of the pain from his cancer. Pat was welcome to visit and did once, but she couldn’t get away that much. There was just no good answer.

    The only lesson I could take from this is, when possible, manage your life realistically. Maybe, that may make your last months a little better.

  7. Basiorana says:

    For the elderly, when the body– or worse, the mind– goes, it’s so important to have control over the details of death. My grandfather carefully planned his entire funeral and post-funerary details when he was 85, ten years before he died and soon after my grandmother’s passing. He took great comfort in knowing that everything was taken care of, and whenever he died, he would leave nothing unfinished and all would be exactly as he wanted it. He died sharp as a tack, in the hospital, surrounded by his children.

    I absolutely believe there are good deaths and bad deaths. A good death happens after a long and happy life, leaves nothing unfinished, and is not painful or traumatic; the person in question is ready for it and not afraid of it. My grandfather’s death was like that. A good death leaves people missing the deceased, sad for themselves that they don’t have that person any more, but not actually sad for the deceased themselves.

    My partner and I have already made plans for how we intend to end our lives if need be, if we want a quick and painless death instead of a long and traumatic one. We’re young, but you never know when you’ll have to make that decision. Of course, we also have arranged for no extraordinary measures and no artificial life support, particularly after brain damage. Death is a part of life, to be afraid of it only causes pain.

  8. SkepticalLawyer says:

    Why do most people find it inhumane to prolong a pet’s suffering but unethical to allow a person to end his or her own?

  9. Isn’t there quite a bit of science-based medicine in hospice care? The intent may not be to cure, but a considerable amount of expertise and (pharmaceutical) technology is used.

  10. Diane Jacobs says:

    My fantasy is that by the time my time comes there will be little kits available by prescription; I pick one up, go home, (or have it delivered) am able to take the pill or drink the stuff (whatever) myself or have it administered by an understanding home-care person; I will have prearranged to have my remains scooped up shortly thereafter and donated to the nearest anatomy lab.

  11. Fifi says:

    Interesting that you’d choose to go to literature on an SBM blog to bring up the right to end one’s own life rather than actually refer to the much less fictional (and reality-based) discussion going on in medical ethics about these subjects. Fiction can sometimes give us insight into subjectivity and help us to perceive reality from another subjective perspective but it’s no substitute for having a reality-based discussion or looking at the real world ethical issues that are relevant to medicine when it comes to euthenasia or the right to end one’s life with dignity. (And, of course, this is a living writers subjective imagining of what goes through the minds of people who choose to end their lives in this way – just because it’s convincing doesn’t mean it’s actually realistic or accurate, the whole point of fiction is to create believable fantasies or make-believe.) Fiction is actually often a means to replace real world complexity and uncertainty with the sort of narrative and symbolic completeness that us humans love (our brains being meaning machines) – and subjectivity – but that is often absent from objective reality.

    And, of course, one can’t actually control death. Just like one can’t actually control whether they get cancer or not by exercising and eating healthily. One can only possibly sort of control the circumstances around one’s dying (and then it seems like this character wasn’t even controlling her death since her decisions were contingent upon what the insurance company would cover!). And, of course, one can kill or attempt to kill themselves (how successful one is, and how painful one’s death or near death is, depends upon having enough knowledge and good enough planning…or the guidance or help of a medical professional).

  12. edgar says:

    Sorry, but. there just is no “Good” death.
    There is only “less horrible”

    I profoundly disagree with this statement. I myself have seen great beauty in death.

  13. Hmm – my fantasy is that my family and friends could have a really nice fireworks show in lieu of a funeral for me. But I’m concerned about fire marshall codes (really, a few sparkler’s won’t do) and expense. Better start saving now or arrange to die on July 2nd.

  14. Lawrence C. says:

    This is a thought-provoking post with an unfortunate headline. One cannot control death as it is inevitable, guaranteed and absolutely out of one’s control. One can, though, in many instances control the manner of one’s dying. The distinction between these two words and what they mean is important.

    For many people, they do not consider the fact that they will surely die until they find themselves dying. This can be a great problem. People that do, however, realize their mortality can make some plans for the manner of their dying and not only bring themselves peace but also those around them. They can control the way in which they face their death.

    I have been involved with many people who are dying, have witnessed many deaths and concur with Edgar that there can and often is great beauty in death. There can also be great pain and suffering. In both cases I think Dr. Hall has got it exactly right when she says that she “can understand their choices and empathize with them” and concludes “I have to respect their autonomy and admire their courage.” To be able to respect the final wishes of another person and help them to achieve these wishes is a thing of indescribable generosity and kindness. It makes a great difference to the person dying and brings a particular sense of having done the right thing to those around them.

    Lastly, I truly appreciate the first sentence of this article, about science not being the “only game in town.” If science has opened my mind to anything it is to the vast variety and diversity of experiences of the human being. There are so very many ways to experience the vast richness of life and while science provides one of the most interesting it is by no means the only method. Science may change its understanding of things but once a great work of literature is made it remains fixed to change new generations who encounter it. I prefer a world rich with science and literature to any where one neglects the other.

  15. Regarding the title. I guess it is semantics or just how I read it, but I am fine with the concept of taking control of death. One could say that “you are taking control of your finances” or “taking control of your life” and the reader can still understand that one never really HAS control over their finances or their life. So to me it is a question of degrees. While you may not have complete control, you may be able to have more control than you are currently attempting. But, I am quibbling.

  16. Diane Jacobs says:

    It could be that having even just the illusion of “control” over anything, anything at all, is the biggest placebo response elicitation humans could ever hope to enjoy.

  17. Mark P says:

    Why do most people find it inhumane to prolong a pet’s suffering but unethical to allow a person to end his or her own?

    Answer: “most people” do not. Most people from a Western religious orientation do — thanks to some shared values of the “sanctity of life” over-riding all other issues. It’s not in the Bible, as such, but has built up over the years. Roman and Greek attitudes to suicide, for example, were quite different.

    Many cultures find Westerners desire to prolong life — at whatever cost in pain and suffering — to be quite peculiar.

    Similarly they find the whole abortion controversy in the US quite mystifying, because it is again based on specific Christian attitudes to life and when it starts.

  18. tcw says:

    Some of my two favorites: Aldous Huxley’s Brave New World–removing death from public view and from a society that places pleasure at the pinacle. Orwell’s 1984 that places pleasure at the bottom and makes death and the State inseparable. Two dystopias with vastly different visions of society and the problems with death. I appreciate this post for a reference to literature (while wishing for more or different examples), whereas in our blog blasted brains, we have grown accustomed to writing about our own experience as what matters. Most mainstream Christians do not want to prolong life at whatever cost to pain and suffering, in fact they find such an attitude wrong, vitalism, if you will. The “sancity of life” has built up over the years, perhaps, because it is a response to the opposite that has built up over the years. Christians would walk through piles of infant bodies in Rome looking for survivors. Romans found it mystifying. Ancient Rome and Greece, as you have heard, are no longer extant civilizations.

  19. Ztarr says:

    I would rather exist than not exist, even if that means existing in agony and suffering.

  20. Chris says:

    Our family is still reeling from a death due to suicide.

    I am sorry Ztarr, that I must disagree with you. The very loved family member who decided to end her life did it with great thought and deliberation. She even attempted to finish a stitchery project for one of her cousins.

    She lived with constant pain, suffering for the last thirty years. She started to have chronic migraine headaches during her freshman year of college. At the beginning she was able to manage the headaches and function in society.

    But it became impossible to hold down a job about a decade age. So she became unemployed.

    Then just before Christmas 2009 she developed a symptom associated with chronic migraines: acute hearing. She could hear her mother put a tea cup in the microwave oven on the main floor while she was in the basement!

    She was a very talented musician, but the acute hearing caused actual pain if she tried to practice the piano or guitar. She could not even listen to music since it created pain. She could not even watch the telly, because when she turned the volume down to a tolerable level it was drowned out by the noise created by the TV electronics itself!

    The final straw was when the chronic migraine symptom manifested itself very cruelly into a form that took away a method of comfort: music and movies.

  21. Chris says:

    I should mention the only phrase that has comforted us in the last two weeks:

    “At least she no longer is in pain”

    Think about that.

  22. Mark P says:

    Most mainstream Christians do not want to prolong life at whatever cost to pain and suffering,

    You sure on that? Then all that fuss about Terry Schiavo was the atheists objecting then?

    No mainstream Catholic will go near euthanasia, so that pretty much rules out 1 in 3 Christians.

    I’ve not seen much pro-euthanasia coming from the Anglican/Episcopalian churches.

    Most Baptists go mental at the thought.

    Perhaps the Russian and Greek Orthodox churches are what I am missing. /sarcasm

  23. “Most mainstream Christians do not want to prolong life at whatever cost to pain and suffering,

    Mark P “You sure on that? Then all that fuss about Terry Schiavo was the atheists objecting then?

    No mainstream Catholic will go near euthanasia, so that pretty much rules out 1 in 3 Christians.

    I’ve not seen much pro-euthanasia coming from the Anglican/Episcopalian churches.

    Most Baptists go mental at the thought.

    Perhaps the Russian and Greek Orthodox churches are what I am missing. /sarcasm”

    Well, that statistics that I have looked at say Catholics 23%, Protestants 53%, Mormons 2%, and there’s quite a few non-baptist Protestants…Lutherans (perhaps you missed some of European history) Presbyterians, etc.

    I don’t seem to remember the Terry Schiavo case how you did. It seemed to me that there were Christian on both sides of the issue, Not all Christains vs the Athesists. Although I’m sure the most right wing extreme of “Christainity” would like you to believe that everyone else is an ethist.

    I think it’s good to remember that the U.S. has a lot of Christians of many different denominations and they don’t ALL actually believe or follow every bit of their church doctrine. So, when I want to know what a particular Christian (or Jewish, Islamic, Buddist, Secular, etc person) thinks on an issue, I ask them, rather than just making a guess based on one aspect of their belief system.

    Regarding euthanasia. Firstly, I distinguish euthanasia from physician assisted suicide, which is legal in a few European countries and two states of in the U.S. and allowing the natural progress of a disease (or accident) to cause death without medical intervention, but with pain and other comfort measure, such as hospice care.

    I think of euthanasia as causing death through a medical intervention such as a drug overdose, when the individual is unable to communicate their wishes. I’m not aware of any nation, of any religious or non-religious affiliations, that allows that. Is anyone?

  24. Fifi says:

    Diane – “It could be that having even just the illusion of “control” over anything, anything at all, is the biggest placebo response elicitation humans could ever hope to enjoy.”

    Great observation! And perhaps the bigger the fear associated with having no control, the bigger the relief of feeling as if one does actually have some control – whether we’re talking about feeling we have some control over death by organizing and trying to control the circumstances of our dying (and what happens after our death) or by eating healthily and exercising because we feel it gives us more chance of controlling the circumstances of our dying. I’d venture to add that people who are fearful of death use both magic/CAM/religion AND science to feel as if they have some sort of control over the natural world and their own demise.

  25. Things I have learned from my handicapped friends:

    When you are so disabled that life is all you have left, life itself can become very precious. Don’t presume that you can predict today what you will want in the future.

    A dependent person is very vulnerable to projection. If someone describes you as enduring unbearable suffering, does that mean that you can’t bear it? Or that they can’t bear to watch you suffer? Or that they are exhausted from caring for you and not seeing any relief?

    That said, I don’t want to end my days demented, fearful and neglected. Since I don’t have children to oversee my care, neglect is almost certainly in my future if I don’t cash in my chips early. Not a terrific choice, and worse, one I expect to have to make while I am still able — that is, before I’m actually in trouble.

    I have not made my beloved any promises beyond that of doing my best. I have not promised that any decisions will be quick or easy or obviously correct. I will take into account what I know about both of us and ask forgiveness for getting it wrong — because I will get it wrong. There is no truly right answer when someone cannot speak for themselves.

  26. “I’d venture to add that people who are fearful of death use both magic/CAM/religion AND science to feel as if they have some sort of control over the natural world and their own demise.”

    Well, pragmatically, regardless of whether we are fearful or not of death, or what (if anything) we believe comes after …It’s amazing, if you are forty years old and in good health, how far NOT jumping off a very tall building will take you (or the opposite, of course.)

    But then I have never been one of those ‘where am I going to be in 10 years?” sort of people. But within the short term, I’m certain I have some sort of (but not complete) control over death.

  27. Mark P says:

    I think it’s good to remember that the U.S. has a lot of Christians of many different denominations

    I don’t live in the US.

    and they don’t ALL actually believe or follow every bit of their church doctrine.

    If they don’t follow the ones concerning life and death, then they are pretty much not “mainstream”. Is there any Christian church which officially supports euthenasia?

    Regarding euthanasia. Firstly, I distinguish euthanasia from physician assisted suicide, which is legal in a few European countries and two states of in the U.S.

    You do not get to make such distinctions and you confuse the discussion when you do. Euthenasia includes the taking of a life early through the decision of the patient.

    Most Christians regard it as suicide and oppose it. Increasingly nations allow it.

    New Zealand recently allowed a woman to starve herself to death. Effectively it was suicide, but attitudes to euthanasia and suicide has softened greatly here. Turning off life support is relatively easy providing the will of the patient is known. Those opposing the changes do so almost exclusively for religious reasons.

  28. “If they don’t follow the ones concerning life and death, then they are pretty much not “mainstream”. Is there any Christian church which officially supports euthenasia?”

    Gallop has been polling Americans on their opinions on “Right to Die” laws in the case of terminally ill patients since 1947 and Physician assisted suicide since 1996.

    Here’s their report in 2006.
    http://www.gallup.com/poll/23356/Public-Continues-Support-RighttoDie-Terminally-Ill-Patients.aspx

    This report is in regard to a terminally ill patient if the patient and his family request it.

    Excerpt:

    Support doctor ending patient’s life by painless means.
    Protestants 61%
    Catholics 71%
    No Preference 84%

    Support doctor assisting patient to commit /suicide
    Protestants 50%
    Catholics 62%
    No Preference 81%

    So if you guessed an American Catholic or Protestant would say no on these two questions, you would be wrong more than 50% of the time.

    Of course I can not speak for New Zealand, but since you used an American example, it’s fair to look at American attitudes.

    Perhaps that means you would place the majority of Americans outside “mainstream western religion”. Which would be an amusing interpretation of mainstream, but I’m guessing the Vatican might agree with you, right now.

  29. lin says:

    I agree with Alison about the dangers of projection in this setting and I think her points about who decides when suffering is unbearable are very important. The literary examples above are about people ending their own lives, but all too often the cases that play out in the media are where people have ended the lives of others – parents killing their disabled children, children killing elderly parents, murder/suicides with elderly couples – and this is, in my opinion, a very different issue.

    Like Mark P I’m from New Zealand, but I do distinguish euthanasia from physician-assisted suicide and despite being an atheist I’m opposed to the former and dubious about the latter. The recent case he refers to, in which a woman requiring hospice care for a previous stroke refused all food and drink, is from my point of view a case of a mentally capable (she underwent three psychiatric assessments) person refusing treatment, rather than either euthanasia or PAS – I see it in much the same ethical light as Jehovah’s Witnesses refusing blood transfusions.

    In contrast, the main campaigner for a right to death in New Zealand is a woman who gave her terminally ill mother a fatal overdose of morphine, having refused offers of help and hospice care. The extended family, who were not consulted about this decision, have by and large been very unhappy about her actions and subsequent campaign career (she was convicted and imprisoned for a short term). I think there is a problem when someone who is supposedly campaigning for a right to die is really looking for justification of their decision to kill.

  30. StatlerWaldorf says:

    Chris, I’m very sorry for your loss. A friend committed suicide last month, and a dear family friend did a year and a half ago. In their cases they suffered deeply from sever depression (and manic depression in one case) and they felt that ending their own lives was the only way out of the mental and physical pain afflicting them for a long time.

    Many terminally ill and elderly people suffer profoundly too, and I can only imagine how it must feel to be so desperate to consider suicide as the best way to end the suffering.

    While it would be terrible to see any legal use of assisted suicide abused, I can sympathize with why many people do fight for the legal right for assisted suicide to exist in the first place.

  31. Fifi says:

    One can’t talk about the right to die without talking about assisted suicide simply because some people who choose to die don’t actually have the physical ability to kill themselves. Those of us who are able bodied and CAN exert some control in the form of killing ourselves can easily kill ourselves, we’re not who right to die laws would be for – they’d be to protect the people who help those unable to kill themselves carry out their wishes.

    On an entirely anecdotal level – which is pretty much what we’ve got for obvious reasons – hastened deaths actually seem to be quite common (in the cases I know about, after consultation with the person’s children). Physician assisted suicides aren’t entirely uncommon either.

    http://www.ncbi.nlm.nih.gov/pubmed/9554861

    While I’ve been for right to die most of my life, and basically still am, a friend of mine who teaches medical ethics brought up some aspects that I hadn’t considered. The main one being very ill, incapacitated or old people who feel like a burden to their family and pressured to die early for the sake of other people (not just because they want to for their own sake). All in all, it’s a complex issue that is very much about reality…no matter how many reassuring, romantic fictions we create around suicide and death. And a reality-based perspective requires looking at some aspects of reality that many of us prefer to avoid and not simply copping out by choosing a reassuring fiction (just because it’s based on the author’s parents doesn’t mean he’s not romanticizing the issue, it actually means he’s likely to be even more prone to doing so because he’s emotionally invested in a particular narrative). Fiction and art can give us insight into subjective realities, and even bring aspects of reality to our attention or a certain perspective, but it’s not SBM or even a discussion of basic medical ethics that take science into consideration. In some ways, using a story with a happy ending (and a fictional one at that) which supports our own views is really just a means to present anecdotes in place of evidence and the comforting closure of fiction in place of actually facing complex reality.

  32. Harriet Hall says:

    Fifi said, “Interesting that you’d choose to go to literature on an SBM blog to bring up the right to end one’s own life rather than actually refer to the much less fictional (and reality-based) discussion going on in medical ethics about these subjects.”

    I wasn’t going to say anything, but now she talks about “copping out by choosing a reassuring fiction” and adds that fiction is “not SBM or even a discussion of basic medical ethics that take science into consideration” etc.

    Interesting that Fifi is the only commenter to object to my writing about fiction; others even praised that approach. Also interesting that she interpreted my post as a discussion of medical ethics, which it clearly was not.

    If I had wanted to write about medical ethics, I would have done so. Instead, I chose to write about how literature can enhance our empathy and our insight into other minds (in a way that science can’t), and why some rational people might choose not to accept what science-based medicine has to offer. I even said I probably would not make the choices the characters did, so it is difficult to see why she thinks I’m talking about medical ethics (other than saying that I support the patient’s right to autonomy).

    Instead of “a means to present anecdotes in place of evidence and the comforting closure of fiction in place of actually facing complex reality,” I think fiction contributes to a better understanding of how complex that reality really is.

    It seems to me that Fifi is deliberately picking on me as she has done in other threads both with me and with Dr. Tuteur. She seems to make her own idiosyncratic interpretations of what I write and criticizes me for things I didn’t actually say. Maybe I’m being paranoid, but I suspect that if Dr. Novella’s name had been on this post instead of mine, she would have responded differently. It is disappointing, because she obviously has a lot to contribute.

  33. Fifi says:

    No, I’m not out to get you Dr Hall even if I often disagree with you and I would have raised the same issues about a similar post by any other blogger at SBM for the same reasons. To post about choosing to kill oneself in the context of an SBM blog – whether one addresses right to die issues or not – is clearly going to bring up medicine and right to die in a medical context (and that of medical ethics). Nothing wrong with a soft intro to a tough subject if one’s willing to actually address the subject – it can actually be a good writing strategy – but a fictional anecdote is still an anecdote. Where’s the SBM?

    The difference between science and art is that science concerns itself with objectivity while art is concerned with subjectivity. This doesn’t mean that the two can’t inform each other – particularly when it comes to personal choice – as you point out. However, one should be careful about making personal choices based upon anecdotes – particularly fictional ones.

  34. edgar says:

    Although I really enjoyed this post, and am a firm believer that art can and does ‘give us insight’, Fifi has a reasonable criticism. I am not so hung up on the “All SBM, All The Time” perspective that Fifi seems to have. As a matter of fact, I welcomed it, SBM, much as I love the subject, can be a bit, uh, dry. But I fail to see how Fifi is ‘picking on you.’

  35. Dr Hall,

    If you are doing an opinion poll on what fiction can bring to the understanding of others’ perspectives, I tend to share Fifi’s concerns. I’m literal-minded, am uncomfortable with fiction in general, and am suspicious of projection. (That’s a description of me, not a prescription for you or anyone else.)

    I don’t read many novels any more, but the movies I’ve seen about people facing death with generosity and maturity serve as models of a good death, the death we would like to have for ourselves — and the easy, unfussy death it would be so convenient for our loved ones to have. In movies, people who take control of their own deaths are always so clean. Did you see Nick Cage in Leaving Las Vegas? A very dainty death for someone dying of alcoholism. And the portrayal of Alzheimer’s disease in Away From Her? Have some saccharine with your sugar.

    It’s quite popular to talk about death with dignity. We can all buy into the idea. We may even have a good feeling that we are being brave and breaking a little taboo, when in fact the desire for a physically and emotionally tidy death is very mainstream. When my father-in-law was in the hospital with emphysema for the last time, he expressed the desire to end it all. A psychiatrist was fetched to prescribe an antidepressant; his daughter asked if he would like to see a priest (he would); when the priest left, the morphine drip was started and he was dead by morning. Very matter-of-fact and routine. Not a bad thing, but hardly a radical new idea.

    So when Fifi says, “While I’ve been for right to die most of my life, and basically still am, a friend of mine who teaches medical ethics brought up some aspects that I hadn’t considered. The main one being very ill, incapacitated or old people who feel like a burden to their family and pressured to die early for the sake of other people (not just because they want to for their own sake). All in all, it’s a complex issue that is very much about reality…no matter how many reassuring, romantic fictions we create around suicide and death. And a reality-based perspective requires looking at some aspects of reality that many of us prefer to avoid and not simply copping out by choosing a reassuring fiction” she speaks for me.

    I’d personally feel more comfortable with a science-based discussion of medical ethics (which your post was not, and did not attempt to be). In discussing end-of-life I’d rather not feel at risk of being tricked by a reassuring fiction.

    Do demented people ever fear death? Did Tracy Latimer want to live? By turning our gaze to reassuring fictions of people exerting control over their own deaths, do we risk looking away from the vulnerable?

    Dr Hall, I didn’t volunteer my suspicious attitude toward fiction because many people do find value in fiction. (That’s not me, but in general it’s a very good thing that most people aren’t like me.) But since you asked… no, not everybody loved your post.

  36. Since we’re doing a survey, I enjoyed to post. I read it more as a fictional book review for people who might be interested in the topic of aging…perhaps something to round out the reading of someone who reads a lot of research or non-fiction. I enjoyed that it was a personal perspective on the books and did not advocate that a particular viewpoint was correct or more “science based”. I think the resulting comments were interesting and thought provoking. That is why I enjoy SBM.

    Perhaps you should start a SBM book club. :)

    I probably would also enjoy an article that discusses end of life issues from a medical ethics, science based perspective as well. I’m not so much either/or. I appreciate a lot of different approaches to the same topic.

    Dr. H. my perspective on FiFi is that I wouldn’t take her quite so seriously. She does the same thing to quite a few commentors (including me) as well. You just can’t please all the people, all the time.

  37. Harriet Hall says:

    “Where’s the SBM?”

    The SBM is there in my statement that science isn’t the only game in town and that some rational people reject SBM treatments. I think SBM should recognize this and try to understand.

    We have been accused of worshiping science to the exclusion of all else; I offered this post as a corrective. You can’t please everyone. :-)

    I firmly believe literature has value and enhances the human experience. I have a degree in language and literature, so perhaps I’m biased. C.P. Snow, who was both a scientist and a novelist, said that the breakdown of communication between the “two cultures” of modern society — the sciences and the humanities — was a major hindrance to solving the world’s problems. I don’t know about “major hindrance” but I do think there’s some truth to his viewpoint.

    And OK, I will readily admit to being paranoid and over-reacting. I have a chip on my shoulder because of past experiences. It’s good to know Fifi isn’t out to get me.

    She says “one should be careful about making personal choices based upon anecdotes – particularly fictional ones.” I fully agree and I never suggested otherwise – I hope she doesn’t think I did. I even said I would probably have made different choices than the characters I described. It was not about making personal choices based on anecdotes: it was about trying to understand the personal choices of others that might disagree with your own choices.

  38. FiFi – “This doesn’t mean that the two can’t inform each other – particularly when it comes to personal choice – as you point out. However, one should be careful about making personal choices based upon anecdotes – particularly fictional ones.”

    Ack, but science is so very bad at describing subjective experiences. If I’m interested in the experience of having cancer, I’d much rather read a personal anecdotal account or talk to someone with cancer than read a study of the symptoms of cancer patients. (Well, I’d rather do both.) The thing I like about fiction is that a good writer can bring to life things that you haven’t thought of. The discovery is how you respond to those things. It is more an exploration of self than of the outside world.

  39. Regarding fictional characters refusing SBM: I’m not sure I understand.

    In Finding Frances, the central character chooses hospice care over surgery.
    1) Is hospice care not science-based medicine?
    2) If she understands that surgery might prolong her life and that hospice care will not, is her choice not science-based?

    In The Leisure Seeker, Ella has “refused surgery and chemotherapy, uses a walker, and is dependent on pain pills.”
    1) Is pain medication not science based?
    2) As above, if Ella understands that she has refused surgery and chemotherapy that might prolong her life, and that she is dying, is her choice not science-based?

    It doesn’t appear to me that either character is refusing science-based medicine at all. They are refusing particular treatments based on an informed risk/benefit analysis. Quite different from someone who wants to live rejecting chemotherapy in favor of German New Medicine.

    Isn’t medicine about treating patients, not diseases? The use of science doesn’t change the goals of medicine, and from your description these particular fictional patients seem to have been adequately treated.

  40. micheleinmichigan,

    “If I’m interested in the experience of having cancer, I’d much rather read a personal anecdotal account or talk to someone with cancer than read a study of the symptoms of cancer patients. (Well, I’d rather do both.) The thing I like about fiction is that a good writer can bring to life things that you haven’t thought of.”

    And I’d rather read a scientifically-selected collection of personal anecdotal accounts! A good scientific writer can discover things they wouldn’t have thought of and bring them to life for you.

  41. weing says:

    As, I think, Kissinger once said. “Sometimes even paranoids have real enemies.”

  42. “And I’d rather read a scientifically-selected collection of personal anecdotal accounts! A good scientific writer can discover things they wouldn’t have thought of and bring them to life for you.”

    Yes, that would also be good. My only complain would be that really good scientific writers seem rarer than really good fictional writers. But perhaps that is my bias.

  43. fiction writers…fictional writers would be something else.

  44. micheleinmichigan on preferring fiction writers:

    “But perhaps that is my bias”

    As Fifi would say, we’re all biased and it’s nothing to be ashamed of!

  45. Fifi says:

    michele – “The thing I like about fiction is that a good writer can bring to life things that you haven’t thought of.”

    Certainly, and I value art and other people’s subjective experiences as subjective experiences – it’s why I’ve spent most of my professional career working in the arts in various ways. The problem is that a good writer can also bring to life things that aren’t real or, because fiction has certain conventions that exist to satisfy the human desire for meaning and a tidy narrative, reduce real world complexity to satisfy our desire for tidy narratives. It’s one of our cognitive weaknesses as humans, we like stories and tidy narratives. It’s why so many people can cling to CAM and stuff that makes no sense scientifically and easily dismiss critiques simply because science can’t present a tidy narrative that neatly explains life, the universe and everything (and provide personal, subjective meaning for life, the universe and everything).

    A book that combines science and art very beautifully is A General Theory of Love (or at least it tickles both the science and the art geek in me while giving insight into the science behind the romantic fictions).
    http://www.amazon.com/General-Theory-Love-Thomas-Lewis/dp/0375709223

  46. Actually, another non-fiction book that might be relevant is “Stumbling on Happiness” by Daniel Gilbert. It is about how we predict or more often fail to predict our future happiness.

    http://www.amazon.com/Stumbling-Happiness-Daniel-Gilbert/dp/1400077427/ref=sr_1_4?ie=UTF8&s=books&qid=1270843676&sr=1-4

    There is a section discussing how people generally imagine other’s with disabilities to be much less happy than those people actually report being. Not really about end of life issues, but the concepts can be somewhat relevant to those issues.

  47. AC “As Fifi would say, we’re all biased and it’s nothing to be ashamed of!”

    Sure, but the more I think of personal bias, the more it makes my head hurt. It is a riddle, wrapped in a mystery, inside an enigma, etc with a cherry on top. :)

  48. Fifi says:

    “As Fifi would say, we’re all biased and it’s nothing to be ashamed of!”

    Yes I would say that :-) There’s actually a fair amount of interaction between art and science (in fact there’s a whole genre of literature – science fiction – that is based in it).

    All in all, it was pretty necessary for medicine to step back from the art and focus on science otherwise we wouldn’t have SBM! Dr Hall, how do you think SBM could incorporate or learn from fiction and art in a way that isn’t just introducing subjectivity back in a way that conflicts with the objective aims of SBM?

  49. Harriet Hall says:

    Alison,

    I guess I should have been more explicit about what I meant. The characters weren’t rejecting SBM as a whole, but they were rejecting specific science based treatments that could have prolonged their lives. Many science-based doctors have a great deal of difficulty understanding why a patient might refuse a particular treatment that is known to prolong life. When a patient refuses lifesaving surgery, they tend to think the patient is crazy or incompetent and they call in a psychiatrist.

  50. “Many science-based doctors have a great deal of difficulty understanding why a patient might refuse a particular treatment that is known to prolong life.”

    I have a nurse friend who worked in a trauma unit who left the unit for this reason. One particular doctor had a tendency to order a variety of tests for patients who were experiencing a great deal of pain and had no statistical chance of recovery. The tests required the patients to be moved which increasd pain. Other doctors would normally make the patients as comfortable as possible at this point, but this doctor chose to order tests and procedures in the attempt to extend life. My friend found following these orders to painful, and ultimately left that line of nursing for another.

    Both of my parents received chemotherapy after their cancer was diagnosed as terminal. The chemotherapy* was done with the hope of alleviating some of the symptoms of cancer. To be honest, in both cases the chemo was pretty devastating and makes me wonder about that approach. But, of course, I don’t know what it would have been like without the chemo.

    *my grandma called it creamotherapy, which sounds more apt.

  51. Harriet Hall on science-based doctors:

    “When a patient refuses lifesaving surgery, they tend to think the patient is crazy or incompetent and they call in a psychiatrist.”

    Interesting. I’ve never heard of that for an elderly person. (My grandmother refused life-saving surgery for my grandfather, and while the doctor was apparently a little shocked, recovered quickly and brought in the IV morphine.) Old people have had a long time to get used to the idea of death and often spend their last years shedding things — disposing of objects, accepting a more limited range of activities and abilities, saying good-bye to the people who shared their memories — and the final shedding is often not that big a deal. In my very limited personal experience, when an old person says they are ready to go they generally know what they are talking about (that goes double if they insist that they aren’t ready yet) and their doctors respect that.

    My sister is a dedicated science-based doctor (and professor at a teaching hospital) and among her most important sources of job satisfaction is helping families identify realistic hopes — which in her particular line of work often means a peaceful death surrounded by family.

    I’m referring to old people here because the books you discussed were about old people. For younger people it seems appropriate to make very sure that refusing life-saving surgery is really what the patient wants and to ask the question from different perspectives. A little like many doctors who refuse to sterilize young people, especially if they have not yet had children. It’s not that it couldn’t be the right decision, but it’s a big and irreversible step and not obviously developmentally appropriate. So double-checking in this situation wouldn’t surprise me.

    Thanks for explaining. I didn’t know.

  52. Fifi says:

    Dr Hall – Thanks for the explanation, I wasn’t aware that SB doctors may have more difficulty understanding quality of life choices or have difficulty in understanding why someone would refuse a treatment that prolongs life when someone is terminally ill (but decreases quality of life). Why do you think this is? And what do you base this on? (You may very well be correct in your assertion. I’m asking because my experience and perception are different and, because my perception is based upon my subjective experience, I may have incorrectly assumed that SB doctors are actually quite open to rational discussions and decisions regarding end of life issues…or at least they’re no more closed to the idea that quality of life can be more important than quantity and a patients right to choose to die.)

    Isn’t it important to make sure the patient isn’t crazy or incompetent and is making a rational choice? I tend to see that as quite a rational measure to ensure that the patient is making an informed choice (and not only for legal purposes!).

  53. Harriet Hall says:

    Fif asked, “how do you think SBM could incorporate or learn from fiction and art in a way that isn’t just introducing subjectivity back in a way that conflicts with the objective aims of SBM?”

    I think scientific doctors can benefit from art, movies, and reading books like the ones I discussed. Science-based doctors can incorporate a compassion and appreciation of different viewpoints into their bedside manner without in any way compromising or interfering with the objective aims of SBM. SBM aspires to treatments based on the best evidence, but it doesn’t require that we abandon our humanity in the process. The most essential element in the care of a patient will always be caring about the patient.

  54. Harriet Hall says:

    It’s not fair to make an overall generalization about how doctors in general or science-based doctors in particular react in these situations. As human beings, they run the whole gamut of human possibilities. Many humans are uncomfortable with the idea of death, and some doctors think their job is always to keep people alive, so they perceive a death as a guilt-inducing personal failure.

    That said, Michele’s story is typical of my experience. When a specialist can think of something to do, he often wants to forge ahead and do it, without stopping to consider the patient’s perspective or to realize that it might not really be in this particular patient’s best interest. I’ve seen many tests and procedures ordered more for the benefit of the doctor than the patient. That’s one of the reasons I chose family practice as my specialty.

    I do have a sense that this attitude is changing (what with advance directives and hospices and all that) and that doctors are becoming more comfortable with death and are more willing to consider not treating as an option today than they were 20 or 30 years ago.

    It’s crucial to figure out whether a patient is making a rational informed decision or whether he is under some misconception or is depressed or suicidal, or is making a decision to save money or make it easier on the family. Or because he’s in constant pain that changes in the medical regimen might be able to alleviate. Sometimes if a patient feels hopeless we can restore a realistic measure of hope.

  55. Fifi says:

    Dr Hall – “The most essential element in the care of a patient will always be caring about the patient.”

    Of course and I appreciate you emphasizing this aspect of medicine. But do you really think that SBM or scientific doctors lack in compassion? That seems to be more about the individual who is the doctor to me.

    I agree, literature and art can certainly provide us with experiences and give us a window into other people’s minds and how they experience the world. And I can understand wanting to share books you’ve read that you enjoyed and that moved you :-)

    But medical science is also a great tool for better understanding people (cognitive science, psychiatry, psychology – which is perhaps the most literary of the medical practices ;-). I guess I’m a bit surprised since I don’t see SBM or scientific doctors – or scientists – as being less compassionate than religion or CAM. If anything, science allows us to better understand ourselves, our subjective experiences and the world from a (more) objective viewpoint. (Which naturally informs our subjective perspective of the world ;-)

  56. Fifi says:

    Dr Hall, sorry I posted before i saw your second post. My mother, who’s a GP (and psychologist), has recounted similar stories. From a patient perspective, I think most of us rely upon our GPs to interpret and give us second opinions regarding results from specialists. (And some of us rely upon our moms too.)

  57. Lawrence C. says:

    If anyone wants to directly experience the things described in the books cited by Dr. Hall, I highly recommend volunteering at a local hospice. The experience of being at the end of a life can bring undiscovered depth to your own life and provide some insight into the things people are wondering about here.

    Once they’ve participated in a hospice environment for any length of time, most people come to a good understanding of the kind of choices different people make when it comes to their death.

    Regarding doctors and their view of death, it’s interesting to note the change in attitudes over the past half century. Strangely enough, until recent times and the hospice movement, many physicians didn’t deal directly with dying patients. They simply didn’t have much experience with attending the dying and in a very understandable way wanted to avoid it. I’ve known several doctors who have undergone a radical change in their attitudes, and all for the better. As Dr. Hall says, “The most essential element in the care of a patient will always be caring about the patient.” And caring for the final days, even minutes, of a person’s life is a great thing to be able to do, especially when cognizant of the nearly inconceivable range of beliefs and desires a dying person may have. One hardly need abandon SBM to do so.

  58. Fifi says:

    Lawrence – Volunteering at a hospice is a good suggestion for people curious about dying, there really is no substitute for reality.

  59. edgar says:

    It is a difficult predicament for docs to be in. Medicine is used to stave off death, but then docs end up failing 100% of the time.
    I can easily see where a more ‘scientific minded’ person would struggle with this.
    I went to Public health school at Tulane, and I once saw a flier at the med school for a get together, sponsored by the “Society to Prevent Right Brain Atrophy.”

  60. Futher to Harriet Hall’s point that not all doctors accept that death may be the right thing under the circumstances, here’s a discussion by an ER doctor of DNR orders and doctors’ attitudes.

    http://allbleedingstops.blogspot.com/2010/04/arrogance-of-hope.html

  61. chaoticidealism says:

    I am disabled and have been considered by many people to have less “quality of life” than other people. I have disabled friends who have these assumptions made even more often about them.

    What worries me about this is that I feel my life has just the same value as anyone else’s does; but most people who aren’t disabled don’t seem to agree with me. From what I can tell, my friends feel the same way–Quality of life doesn’t seem to depend very much on whether you can walk, or whether or not you have migraines, or whether or not you take two hours to get ready in the mornings.

    But people make that assumption all the time. There are official “quality of life” measures that include not the things my friends and I feel are important–happiness, making your own decisions, and being loved by others, for example–but things like being able to feed yourself, or being able to hold a job.

    When people are first disabled, they often think their quality of life is going to be horrible. It’s a big change and it’s frightening and they’ve got to restructure their lives to such a big extent. Many times people are just outright scared out of their wits of being disabled. (I guess I’m lucky in that respect, to have been born with my disability; I never had to make this change.) But later on, when they adjust, when they learn to do things in new ways, they come up to the same quality of life as they did before. Most people don’t understand that. They think disabled people must be heroic just for living.

    What troubles me, then, is that people may easily decide that they themselves, or worse, someone else, has no hope of a good life–especially likely if the disability in question is progressive, and requires as a result constant readjustment. There are too many stereotypes about living with severe disability, or living with cancer, or dementia, or any number of problems, that say, “This is a worthless life. It is nothing but suffering. Death is better.”

    People who have just acquired these problems often don’t know that a good life is possible; their relatives and friends often don’t know it, either. They become bitter and depressed. This is not the way it ought to be. People fear disability to such an extent that they consider it self-evident that people who have lost various skills during the course of an illness must necessarily be unhappy. But here are a lot of people living with various disabilities and illnesses–some of them progressive–who are saying, “No. This is not so. We have as good a chance at a happy life as any human being does. Disability is neutral. It is not a horrible monster. It just is.”

    Until that attitude gets fixed in the public mind, I will be very, very leery of anyone promoting the idea that “This sort of life is horrible. Death is better.” You cannot make that judgment for anyone else; and if you yourself are in that situation, how do you know that you are not simply parroting the things you have been taught all your life about how much of a burden it is to be disabled?

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