Thinking about “death with dignity”

Another morning with no overnight telephone call from the hospice house in the back of Palolo Valley where my mother has been for the past week. It means she’s still alive. Barely.

On Friday, I was sure she would not survive the night. On Saturday, I was sure she would certainly not survive another night. Yesterday, as I prepared to leave, again for the last time, I just looked at my sister, Bonnie, and said with a shrug, “she may surprise us again.” And she has.

I want to think that my mother is aware, at some deep level, when I’m there at her bedside. I have short, one-sided conversations with her, trying to convey a sense of calm, letting her know that any past issues have been resolved and that she can go any time she chooses. It’s all okay now, is my message.

Perhaps, after nearly 99 years, there is just a lot of life to process before being ready to move on. Perhaps your life doesn’t just flash before your eyes, but is recounted at a slower pace as you prepare to walk that final path. Maybe you can choose to watch the life story to the end, or walk through the door at intermission. I don’t know. It’s all part of the mystery.

What is clear is that dying is hard work, and she’s been working at it for more than a week. I’m exhausted, emotionally and physically, just from watching. She must be as well.

In a recent comment, one person asked: ” Without sounding insensitive, am wondering if your experience has affected your views on end of life choices, including assisted suicide.”

Short answer, not really. It has strengthened my general support for Death with Dignity legislation. But it also raises the question of when and how a person’s wish to die with dignity would be fulfilled.

In my mother’s case, even after her personal physician and a hospice doctor said she was not expected to live more than six months, she assured us that she was not dying, despite the hospice diagnosis. And as long as she wasn’t dying, she would not have taken advantage of a system of physician-assisted death, although I think she would have wanted to have that option. Then her health quickly deteriorated in the past couple of weeks. She now realized she is dying and even said at least once she had already died, but she was now in a mental fog and would not have been capable of exercising her right to die with dignity. Would the responsibility of fulfilling her wish fall on us? If she had gotten an end-of-life prescription, would it have been our job to administer it?

This is only the second time I’ve gone through this death experience with someone very close. My dad died just a couple of years ago, and now my mom is near her end. But we’ve gone through it with a number of cats who we also loved. Cats have a way of telling you when they are ready. They stop eating, and stop caring for themselves. If allowed, they would probably find a place to hide in the hard and just wait to die. But we intervene at that point and seek the help of our veterinarian to make the passing quick and painless. It’s always very hard on us, the survivors. But much easier on the one who is dying.

Given my mother’s condition for the past ten days, quick and painless would have been a blessing, and could have avoided the lang, drawn-out, difficult work of dying.

7 responses to “Thinking about “death with dignity”

  1. Ian, I’ve been following your blog for a few years now and in the past week your information about you Mom has sent me searching for more information on death and dying.

    My Mom is 10 years younger than your Mom and lives not far from you. Her health isn’t good and my sister is taking care of her.

    In a recent search, somehow prompted by something I read on your blog I found a wonderful site with great information about the dying process.

    We, as a country, seem to be one of the few that don’t treat dying as part of the life cycle and seem to be unwilling to talk about it.

    There are answers for questions I didn’t know I’d have as well as insights into the way the body and mind handles the immense task of dying. Hope it is helpful to someone.

    God bless all of you and thanks for being willing to share.

  2. I received this comment via email.

    Couple thoughts.

    First, the comfort of knowing that prescribed mediation is available if the dying person wants it can not be underestimated. Oregon reports that a significant number of people for whom death-hastening prescriptions have been written, somewhere in the 30%-40% range, never use the prescription. That’s at least in part because they are not able to do so (see below) but also because many people want the option to use it if they need/choose to do so but ultimately do not develop the need or make the choice. That small amount of control in one’s waning days is reported to be a great source of relief for those going through a process the end of which they have no control over.

    Second, as I understand it, in death with dignity states, a third party can not administer the death-hastening prescription, even with power of attorney, living will, etc. When prescribed in pill form, it is of no use to those who may want to use it only after they have lost their ability to self-administer and swallow solid objects. We administered liquid morphine to control my mother’s pain as she died. She did so without pain and, although the doses and frequency of administration were in line with the directions given, I wouldn’t be surprised if the medication hastened her death while relieving the pain. Any legislation here should address these very practical considerations.

  3. When my father was in the last stages of life a few years ago, he kept insisting that he was 100 years old. My sister and I kept reminding him that he was only 97. However, even though we would review the math with him he REALLY wanted to be 100 years old. He didn’t make it.

    It may be that your mother is reaching for that 99th birthday or maybe something else. Or as you suggested, she just needs more time to process her life.

    I agree with you that there needs to be some death with dignity legislation. When I tell people that both my parents died at age 97 they always say, lucky you to have such good genes. But after observing the quality of my parents lives radically decline during their last five years or so, I am not so sure I want to live that long. Thousands of years ago, if you felt it was your time and you couldn’t go on anymore, you just sat down beside the trail while everyone else walked on. Perhaps there needs to be a modern day equivalent of that.

  4. I concur that Hawaii needs a sensible right-to-die statute. I like the notion of Oregon’s law that seems to preclude bad relatives from acting prematurely since two physicians are involved in the sign off.

    I don’t wish to hang on with thoughts of some imaginary spiritual miracle. We have a will with durable powers but I am told that often is ignored at the hospitals.

    It is time to act.

    Age is immaterial — fatal cancer occurs in 30s and 40s, auto accidents and falls at any age.

  5. I strongly support human euthanasia. I had seven relatives – by marriage and by blood – who wamted to die and were not allowed to do so in a kind & peaceful way. None of them was over the age of 50 and none had a physical illness. However, they got their wish(es) in ways that cannot ever be identified as humane and loving.

    Why is it we can release our pets but not ourselves?

  6. I’m reading a book on memory now, entitled “Seven Sins of Memory” and just finished reading a book on dementia by someone who was dying of it (!) and it seems that we construct our life stories. Reams and reams of most of our life footage is forgotten and those memories that are deemed important and “played back” over the years make it into our final narrative.

    I think her being in the Chinese Care home is preferable to her having been left on the side of road as others passed.

    Brian also sends his best.

  7. compare and decide

    Long ago, I saw a PBS program on euthanasia. I did not draw any conclusions from the show. The issue is too complicated and too profound. I cannot find that program, but here is a recent Frontline episode entitled “Suicide Tourist”, about an American who was afflicted with Lou Gehrig’s disease (ALS) six months earlier and went to Switzerland where assisted suicide is legal.

    In your recent Civil Beat commentary, you come out to support legalized euthanasia because of your recent experience with your mother’s death. You note that elderly patients often linger for days without eating until they finally succumb, and that physician-assisted euthanasia would be of help to both the patient and the family.

    It should be noted that in these cases, there are already legal options for patients already on their death beds. The withholding of medical care, even nutrition, often referred to as ‘passive euthanasia’, is completely legal in the United States. In fact, this is the idea behind the hospice movement. Indeed, the hospice movement’s greatest champion is the Roman Catholic Church; so-called passive euthanasia is very much mainstream orthodoxy. (In the case of the Catholic Church, it is related to their traditionalistic and ultimately Aristotelian notions of what is ‘natural’, which is related to their stance on abortion.)

    Moreover, passive euthanasia can be legally taken one step further where the dying patient, if they express discomfort, is heavily sedated so that they are painlessly asleep for days up to their death. The trick here is shopping around to find a physician or institution that is sensitive to this need.

    So in this sense, legal euthanasia already exists for patients on their death beds. (It’s a bit like the counter-argument to the idea of Congressional term limits: We already have term limits, they’re called elections.)

    The problem is patients who are terminally ill, in severe pain and bed-ridden, yet month or even years away from death. There is no quality of life anymore, and the costs are huge on their families. These are the people around whom the debate revolves.

    But there are strong arguments against euthanasia based on history. From the wiki:

    Euthanasia opponent Ian Dowbiggin argues that the early membership of the Euthanasia Society of America (ESA) reflected how many perceived euthanasia at the time, often seeing it as a eugenics matter rather than an issue concerning individual rights. Dowbiggin argues that not every eugenist joined the ESA “solely for eugenic reasons”, but he postulates that there were clear ideological connections between the eugenics and euthanasia movements.

    A 24 July 1939 killing of a severely disabled infant in Nazi Germany was described in a BBC “Genocide Under the Nazis Timeline” as the first “state-sponsored euthanasia”. Parties that consented to the killing included Hitler’s office, the parents, and the Reich Committee for the Scientific Registration of Serious and Congenitally Based Illnesses. The Telegraph noted that the killing of the disabled infant—whose name was Gerhard Kretschmar, born blind, with missing limbs, subject to convulsions, and reportedly “an idiot”— provided “the rationale for a secret Nazi decree that led to ‘mercy killings’ of almost 300,000 mentally and physically handicapped people”. While Kretchmar’s killing received parental consent, afterwards, most of the 5,000 to 8,000 killed children were forcibly taken from their parents.

    The “euthanasia campaign” of mass murder gathered momentum on 14 January 1940 when the “handicapped” were killed with gas vans and killing centres, eventually leading to the deaths of 70,000 adult Germans. Professor Robert Jay Lifton, author of The Nazi Doctors and a leading authority on the T4 program, contrasts this program with what he considers to be a genuine euthanasia. He explains that the Nazi version of “euthanasia” was based on the work of Adolf Jost, who published The Right to Death (Das Recht auf den Tod) in 1895. Lifton writes: “Jost argued that control over the death of the individual must ultimately belong to the social organism, the state. This concept is in direct opposition to the Anglo-American concept of euthanasia, which emphasizes the individual’s ‘right to die’ or ‘right to death’ or ‘right to his or her own death,’ as the ultimate human claim. In contrast, Jost was pointing to the state’s right to kill. […] Ultimately the argument was biological: ‘The rights to death [are] the key to the fitness of life.’ The state must own death—must kill—in order to keep the social organism alive and healthy.”

    In modern terms, the use of “euthanasia” in the context of Action T4 is seen to be a euphemism to disguise a program of genocide, in which people were killed on the grounds “disabilities, religious beliefs, and discordant individual values”. Compared to the discussions of euthanasia that emerged post-war, the Nazi program may have been worded in terms that appear similar to the modern use of the euthanasia, but there was no “mercy” and the patients were not necessarily terminally ill. Despite these differences, historian and euthanasia opponent Ian Dowbiggin writes that “the origins of Nazi euthanasia, like those of the American euthanasia movement, predate the Third Reich and were intertwined with the history of eugenics and social Darwinism, and with efforts to discredit traditional morality and ethics.”

    What we have here are important distinctions being made between 1) voluntary euthanasia as a potential individual right in the context of the English-speaking world’s legal and ideological orientation toward personal freedom, as opposed to 2) involuntary, state-supported euthanasia.

    But we also encounter the argument, incorrect or not, that historically there has always been a slippery slope between the two.

    In sum, your CB article advocating death-bed euthanasia might be problematic when in general there are already options (i.e., heavy sedation) to end-of-life pain and suffering. Legalizing ‘active euthanasia’ for those already on the brink might be unnecessary. Because there already are options, it might also contribute to a slippery slope much more than euthanasia for terminally ill patients who have months to live would in that it might make euthanasia a more casual choice for everyone. At least, that would be an obvious argument. This is something to think about.

Leave a Reply

Your email address will not be published.