The Right to Decide

 

medical_heartMuch of the focus of the seminar I teach on the Bio-Ethics of Aging relates to the distribution of health care in a world of finite resources.  An equally important issue, based on the responses of the participants during the three sessions, is the nature and scope of one’s right to decide how to die.

In this context, I would note that the initial impetus for my interest in bio-ethics was the prolonged and painful process of dying suffered by both of my parents.  My father, a devout Catholic, was bedridden and in pain at age 54 with the gruesome complications of diabetes. While his faith made it impossible for him to “hasten” his death, he repeatedly expressed the desire to be allowed to die. The last and most tragic chapter of his illness was that four of the five times his heart failed, his doctor took extraordinary measures to get it pumping again.  When resuscitation failed the fifth time, I mourned loss of his life, but celebrated his death. Legally, he had the right to decide to die a year earlier, but he did not have the stamina to overcome his doctor’s refusal to let nature take its course.

The situation was quite different with my mother who hung in there until a week before her 90th birthday. A talented, capable, vibrant woman who romped through eight decades with élan, she made her end-of-life wishes known when she was 70 and still outrageously sound of mind.  She handed my brother and me each a packet containing detailed instructions from the Hemlock Society, a guidebook for “hastening” her death if she was terminally ill and could not manage for herself.

Her wishes were excruciatingly clear. But in 1985, who knew about Alzheimers?  Her advance directive did not include brain plaques as a “terminal” disease that would trigger her living will.  And even if it had, the laws of the U.S. made it impossible for us to honor her wishes and preserve her dignity during her last decade. No longer of sound mind and increasingly unable to take care of herself—the essence of what she wanted to avoid—she did not meet the requirements of those few states that provide for physician-assisted suicide. The tragedy of her illness was that her occasional flashes of coherence—when she begged to have us end it for her—were far too fleeting to meet the legal requirements in even the most compassionate of states.

And so, a decade after my mother’s death, I’m doing my small bit to prevent others from having to endure the painful and prolonged process of dying that my parents went through. In theory, each one of us has the legal right to decide whether to accept or reject health care. Unfortunately, many do not realize that this legally enshrined principle of “patient autonomy” gets short shrift in far too many cases.

One of the prime offenders of patient autonomy, as I saw with my father, is the medical profession. As Atul Gawande observed in his recently released and not-to-be-missed book, Being Mortal, “the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.”  But death is an inevitable part of life.  Medical advances can make our lives longer, but they cannot “fix” the fact of our mortality. What is to be hoped is that more and more members of the medical profession will learn to help us live a good life and then die a good death.

State laws also conflict with the concept of patient autonomy and the ostensibly legal standing of an advance directive. The five states that allow “physician-assisted” suicide do so only for patients who have the mental capacity to articulate their desire to die in the presence of two separate physicians, as well as the physical capacity to self-administer the medicine of choice. The mental capacity without the physical ability is not sufficient. An advance directive that explicitly documents the desire for death in the case of mental incapacity is not sufficient.

As I contemplate my next novel, I know that end-of-life issues will be a key plot thread, and the source of a broad range of conflicts between my characters.  Over the next year, I anticipate doing a series of blogs on health care issues, blogs that raise critical questions for which there are, at present, not very many answers.

I hope you will find the questions helpful in finding your own answers, in exercising your own right to decide.

 

Comments

  1. What a worthwhile topic to explore, Mary! Your pain and your parents’ will now propel you to help others. I’ll be very interested in your forthcoming writings on this topic. My stepdaughter was able to call a halt to more hospitalization & treatment for her brain cancer four years ago and hospice workers took care of her from then on. As devastating a this was for her and our family, she did not suffer extensively at the end, but passed away quite suddenly, for which we were very grateful. But I know others who have not been that fortunate… I would like to learn more about this topic to prepare myself and my loved ones.

    • Mary Gottschalk says

      Kas …You and your stepdaughter were lucky … in researching for my class, I’ve come across an unbelievable number of stories of people who spent their last months in great suffering. Too often these days, the approach of doctors and families is “if we can do, we will do it,” without honest consideration of the likely of benefit or the cost to the patient and family. I’m going to put together a reading list of places to get info, and give out on of my next few blogs. But for the moment, get a copy of Being Mortal. It is very informative and very thought-provoking.

  2. Difficult topic, but especially sad for your poor father. Alzheimer’s is more complex. My mother had a DNR order – do not resuscitate – along with her living will, and I had power of attorney for health care to enforce her decisions. She died of Alzheimers, but hospice nurses sat me down when my mom had to go to the hospital and let me know that I would just be prolonging the end if I let the doctors rehydrate her and try to get rid of an infection. So we let her go, controlling any pain and otherwise not interfering. I think family is very important for enforcing DNR and living will. With assisted suicide, if legal, ethically a patient really needs to do that him or herself and with understanding. An Alzheimer’s patient would have to fulfill that decision before getting too bad off that they have no understanding. People can change their minds in the face of fear – my mom did when she got cancer and insisted on being treated despite being in the grip of Alzheimer’s and saying she didn’t want to live. Also, need to guard against family members hastening a death for their own selfish reasons.

    • Mary Gottschalk says

      Linda … you are so right … you’ve identified a number of critical issues, which I plan to deal with in another blog. But in a way, I see the question as whether the risk of a “slippery slope” justifies the obstacles we put in the way of fulfilling clearly expressed wishes. As a policy matter, I don’t think it does, but when you come to individual cases, the choices are often far more difficult.

      If you wanted to contribute a guest blog to this discussion, I love to have you do it.

  3. Mary, what a bold and courageous undertaking, and I applaud you for it. Recently great media light was shone on Oregon as Brittany Maynard chose to move here to end her life, a young and recent bride with a diagnosed terminal brain tumor. I felt she was courageous in wanting to avoid the ugly and painful death that awaited her, as we had watched a friend die with the same type of cancer. Others, however, do not see it that way. I want grace and dignity at my dying. I do not want heroics performed by the medical community or others on my behalf. Thanks for what you are about to launch and I wish you great success with the posts and your next book.

    • Mary Gottschalk says

      Sherrey … thanks.

      I am with you one hundred percent about dying with grace and dignity … but part of the reason I’ve launched myself on this road is watching how many people do not get to do that even though they have made that desire explicit. Some of it is the legal system. Some of it is the medical profession, which often seem loathe to tell the truth about the odds. Some of it is families, who just don’t want to let go.

      I bet you’re counting the days until Nov. 21 … hope you’ll be spritely by Thanksgiving!

  4. Thanks Mary, for continuing this important discussion.

  5. Phyllis Goodman says

    As I talk to increasing circle of friends who discuss this topic, I observe it is women who are mostly planning such health care procedures. Not to say men don’t consider this. I just haven’t noticed them.
    I wonder if this is because women, traditionally, have been able to assist men in this end of life passage?
    As women live more independently, we need to protect our futures and the futures of our loved ones from the insanity of required medical care beyond what a person wants. I and my partner keep copies of our wishes with us as we travel. Unfortunately, I’ve heard many stories of medical facilities not honoring such wishes. They fear legal retribution, or have a general policy against not doing all they can to prolong life.
    I feel like tattooing a large font instruction on my stomach (at my age, no ones looking except docs) that says what I want. Kudos, Mary, for enabling the conversation to grow.

    • Mary Gottschalk says

      Phyllis … I think your idea of having a copy of your advance directive with you when you travel is brilliant .. .wish I’d thought of it. Kent and I will adopt your idea, starting today with our trip to Minneapolis! But you’re right … advance directives are all too often honored in the breach!

  6. This is probably the most important article I have read recently. You have given poignant examples of the right to end life using both of your parents’ cases. I can only imagine what they and you went through before they were laid to rest. As you say, life is an inevitable part of life and prolonging it unnecessarily can be pointless or, as all too often happens, amount to endless torture when a patient is in pain. I can’t imagine a worse end for anyone. Fortunately, both my parents died of natural causes but I know of too many other cases where the person was kept alive long after death would have been a welcome solution. I fear the medical system in this country so much that I’m planning to retire to Mexico where a patient’s wishes are more likely to be honored. Glad to hear you will keep this conversation going because it’s an important one.

    • Mary Gottschalk says

      Thanks Pennie. I can understand your decision about retiring to Mexico … but as Phyllis noted above, if something happens while you’re traveling, you’re still at risk.

  7. Mary, I appreciate this brave and relevant discussion about the right to decide , as much as one can, the circumstances of one’s death. I have experienced it from the perspective of a health care provider and a family member/friend and know from both sides how important it is to respect an individual’s wishes. I am saddened to hear of your father’s wishes being ignored during his final days. We tend to be a death-defying society when in fact, we’re all going to die and need to ease that transition in a way that respects individual wishes. I have been at the bedside of many as a nurse , as a family member and as a friend and have experienced death as a peaceful transition. My own father’s peaceful death in 2010 has been an ongoing source of consolation to me. Thank you for spearheading this important discussion. I look forward to your ongoing discussion as well as to your next book. I’d like to recommend Dr Lani Leary book “No One Has To Die Alone: Preparing for a Meaningful Death ” as an excellent resource for dealing with the death of a loved one.

    • Mary Gottschalk says

      Kathy … I imagine you’ve seen it from all sides over the years, and I too know quite a few people whose family members have been able to die with “grace and dignity.” A key factor here is the knowledge of what questions to ask, and what conversations to have with family long before the end of life is in sight.

      I will get Lear’s book. Thanks for the recommendation.

  8. My friends are all faced with these decisions for loved ones. I’ve told my husband and friends that if I get to the point where I can’t change my own diapers to remind me that it’s time to go. I look forward to more of your commentary on these important end of life issues. Btw, the movie “The Theory of Everything” about Stephen Hawking presents some interesting insights on how to live.

    • Mary Gottschalk says

      Sandra … I was just reading a review of the movie on Hawking this morning … sounds like a must see. I agree with you about the end of life “style,” but want in it writing as well as a reminder from my partner and friends … if only because they may be so doddery, they won’t be able to help either.

  9. Well and bravely put Mary. My mother was in a Life Care Center for the 42 months of her life and unable to communicate by more than pokes and groans for the last couple of years. She had a crystal clear advanced directive, so nothing was done to prolong her life — she just couldn’t (or wouldn’t — who knows?) let go. That facility changed directors on a regular basis. Each one seemed to feel an obligation to check with family members to make sure the directive was still in force. The third time my father received such a call he went nuts. “That directive was filed so I wouldn’t have to constantly rethink this, but you keep calling me. If you ever call me about it again, I will sue you for harassment!” They never called again.

    There may be good news on this front. I read something a couple of months ago about a growing awareness in the medical community that physical and financial stress and costs need to be taken into account and doctors are being encouraged to counsel patients along these lines. They need to discourage treatments like draconian chemo that are unlikely to add more than days or weeks of pain-free life, etc. They need to come to grips themselves with the facts of death. Some blame this on Obamacare and scream about healthcare rationing. Others recognize it as respect for quality of death for patient and families, and also a way of reigning in the unsustainable rise in healthcare costs we all shoulder one way or another.

    Your next book should be a blockbuster if you continue along these lines! Write on.

    • Mary Gottschalk says

      Sharon … thanks so much for the encouragement. As Gawande’s book suggests, I do think that the medical community is becoming more realistic in their counseling to terminally ill patients. However, an article in Today’s NY Times (How Medical Care is being Corrupted) suggests that treatment options are controlled by the insurance companies through “negative” incentives to consumers (higher co-pays) and “positive” incentives to physicians to use the “approved” drug regimens. Their point is not that the preferred treatment regimens are wrong, but that decisions are being made behind closed doors and through inappropriate financial incentives.

  10. I’m adding another voice of appreciation for the topic. Death is indeed a part of the ongoing cycle of life but too often it’s relegated to the hinterlands of politics, religion, money, and sex: not suitable for polite society. Thanks for shedding light on a subject too long hidden in darkness.

    • Mary Gottschalk says

      Hi Janet … thanks for stopping by. A related aspect of pushing death into the “hinterlands” is the efforts of the medical community (including the drug companies) to make aging and death something to be managed and kept at bay … rather than recognizing, as you say, that it is part of the ongoing cycle of life.

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