Sep 28

Quality of Life

In Brief—What is the meaning of “quality of life?” Is it determined by the focus of the medical profession’s attempt to keep an elderly person alive as long as there is hope or is it up to the individual, regardless of age, to determine when his/her life is no longer worth living? Those uncomfortable questions are explored here. Be sure to read the Addendum for still another element in the end of life question.

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A Question of Life or Death—

A pulsating pale green signal crawls across the monitor telling the white-clad staff of the heartbeat of the patient in the bed below. The patient is a shrunken grey shell of what used to be a vibrant woman. Unaware, she sprouts tubes and catheters like an obscene mechanical octopus. Did she ever think her life would be like this? Failing heart, fluid-filled lungs, punctured, probed, waiting out her remaining time in the company of her professional attendants.

Half a world away, my computer tells me that my father’s widow is the subject of a desperate attempt to give her a few more days of life. Does she want those few days or is she ready to drift into whatever realm she believes awaits her? What is the quality of the life she has been living these last few months and years? Indeed, what is the quality of the life she has lived for many years, even the narrow ones she lived while Dad waited in the outer office, an old magazine is his lap?

Dad drank hard and lived hard, but he could hold his liquor when his companions were unconscious on the floor. He loved the mountains and lakes of Colorado nearly as much as he loved women. And they loved him, even my mother who cared deeply before the alcohol and other women intruded. Although he and Mother divorced, she once admitted that Dad never had a mean bone in his body. He and I had our problems when I was young, but we overcame them when I grew up and realized he and I were not so different. The reward in that realization was that we became close in the last years of his life.

Dad married the woman now in the hospital shortly after he and I reconciled. It was said that she straightened him out, but I’ve always wondered. Admittedly, he no longer drank or dallied with the women, but the spark dimmed. Despite that, his warmth and consideration survived intact. His wife was wedded to her work and, after a while, the trips to his beloved Colorado grew more infrequent before stopping altogether. The waiting room with its stale magazines became Dad’s cage. I have often blamed his wife, but he could have rebelled. He didn’t. The spark guttered out. His quality of life was diminished.

The week before a much-anticipated visit to see Dad and his wife, I had to cancel because of my daughter’s illness. I called to tell Dad that although this visit was off, we would come as soon as my daughter was well. At the end of the call, that gruff, warm old man blurted out, “I love you and I always will.” I reciprocated. He died suddenly a week later. The visit was too late. The quality of my life dimmed, but when the grief faded away, I told myself that I was fine. The grief was a temporary thing, but the good memories lived on. Years later, after my brain operation, I discovered the true meaning of quality of life.

What of his widow? She grieved, of course, but her solace was to invest even more of herself in her work. So it continued until her employer of many years gently told her it was time to go. The woman withdrew into herself. Her apartment decayed for lack of attention. When it became obvious that she was in decline, her niece moved her to a place nearby. Months passed. Then came the message that she was in the hospital.

And what does this story have to do with quality of life? While her quality of life was in decline, and Dad’s preceded hers, what does this have to do with me? Months ago, I wrote of my belief in death with dignity. The woman in the hospital, and many like her, are nearing their ends from natural causes, punctured and probed, attended by professionals who, despite their mission of preserving life, nevertheless violate the dying person’s personal integrity and dignity. Disease, illness and old age are not the only insults humans face. What of the quality of a person’s life? What might the individual want?

Whose Decision Is It?—

Theoretical physicist Stephen Hawking is confined to a wheelchair and without a voice, but his intellect remains intact and his contribution to our understanding of the universe is better for his being here. At the same time, comedian Robin Williams has chosen death rather than face the indignity of a life with Parkinson’s disease. Which one is right? It’s a quality of life issue. The actor Michael J. Fox has Parkinson’s, but he carries on despite having expressed sympathy for Williams’ choice. Which of them was right?

My point is that a natural death is not the only path an individual must follow. The quality of one’s life must be weighed as well. For each individual, it’s a personal decision. If we believe that each person is entitled to live life according to her/his values, as long as nobody else is physically hurt, how can we say that Williams was wrong for choosing to end his life while he still had his dignity and his intellect?

Is it selfish for Robin Williams but not selfish for a person’s loved ones to want their loved one to end life “naturally” being subject to the undignified ministrations of well-meaning medical personnel? Shouldn’t the quality of a person’s life and wishes be taken into consideration? Who is most concerned with that question? The individual whose life is diminished or that person’s loved ones? Who is the selfish one here?

I maintain that it’s up to the individual to make that decision. What’s your view?

Addendum:

There is an article in the September 26 New York Times with a horror story that goes well beyond the issues I have raised here. Here, the villain is the state, not the loved ones who, indeed, struggle to respond to the wishes of a loved one. I urge you to read it. Please.

18 comments

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    • Brenda Frye on September 29, 2014 at 01:32

    What profound thoughts. What accurate statements and well worded. It surely makes one think.

      • Don Bay on September 29, 2014 at 15:55
        Author

      As you have lived closer to Dad and his wife, you know how the quality of Dad’s life, her life, have suffered as a result of her obsessive focus on her job. Now, her chickens have come home to roost and her life and its quality hang by a thread. My heart goes out to her as she waits for whatever she believes awaits her.

      My purpose in writing this piece is to get people to think about the issue. Everybody will shuffle off this mortal coil sooner or later, so the issue bears thinking about and discussing with one’s nearest and dearest. If your state allows a person to make out a “living will,” then by all means prepare one and make your wishes known while you still can. Life’s short, and you never know what’s around the next corner.

    • Donna on September 29, 2014 at 05:37

    I think it is a personal decision to discontinue artificial treatments (ventilator, IV feedings, etc.). Persons in the US are often now asked if they have an “advanced directory” or “living will” so that the family and medical personnel can understand what their wishes were if they are not able to speak for themselves.
    I think that refusing treatment just to prolong life for a few more days/weeks/months makes sense, especially when the person is no longer aware of his surroundings. However, I feel that deliberately ending a life because the patient or family has determined that the life has no meaning.is wrong. Situations change; perspectives change, but taking a life cannot be changed. Oregon allows euthanasia, but has strict guide lines for its use – one of which is that the patient must be terminally ill, and within months of death.
    I think that the hospice approach is good. With hold future medical treatment if the patient is terminally ill, control the pain, and give care and comfort to the patient and family while waiting for the death.
    I read the “horror story” in the NYT – it shows what happens when medical care becomes “a business” and ignores the wishes of the patient and family.

      • Don Bay on September 29, 2014 at 16:45
        Author

      While I agree with you to some extent, I firmly believe that the individual must determine for himself/herself whether life is worth living under the conditions that the individual alone feels. Put more clearly, I don’t agree that terminal illness or extreme pain should be the determining factors. I think that the individual alone—assuming sanity—must be the one who decides if life is worth living, not the state, not doctors and not the loved ones. None of the foregoing are in the individual’s body.

      It may be that conditions can change, that a “cure” can come along and that the individual may “get better,” but conditions may not change, a cure may not be discovered and the individual may not get better. Presumably the individual knows all this and can make an informed decision.

      Age is one factor, cost (in America certainly) another, and the decision is harder the younger an individual is. But what of the 35-year-old who is confined to a wheelchair with a serious degenerative condition that will ultimately render her/him helpless and needing 24-hour care? Dignitas has agreed that this individual’s quality of life justifies granting a quick and painless death. I agree that this individual has the right to determine his/her own end.

      As an atheist who believes that on death there is no heaven or Hell awaiting me, just nothingness. My body will decay or be reduced to ashes, my brain—the source of all thought and belief—along with it. Nothingness awaits. My atoms will still be a part of the universe. That’s good enough for me. The believer thinks there is an afterlife. I think not, and as a lawyer my motto is, “Show me the evidence.” At bottom, tell yourself whatever makes you feel good. Your beliefs, however right for you, are not mine. To this degree we we disagree.

      Remember to prepare a living will…just in case.

  1. We have been over this very subject on this very BLOG, as I recall.
    This is an age old question with no good answer I fear. . Add a pinch of modern day political correctness and/or religion, and it gets even tougher. The question of an individual’s right to end their own suffering weighed against how that might effect those left behind is always a dicey subject.
    Being wired and plumbed into medical equipment to squeak out another couple of days is more about the living than the soon to be departed, as you have inferred in your piece, Don.
    Choosing to end one’s life…..Well, that’s, “the cowards way out”…..Is it REALLY? How many of you would have the guts? Going on with life in spite of serious disability, pain, or conditions that rob the joy out of everyday living takes courage, no doubt. But to decide that it’s time to depart on ones own terms takes HUGE courage.
    The human brain is wired for survival. In our effort to cling to life, humans can endure great hardships, pain, and suffering. We can conjure up superhuman strength when challenged to fight for life. But, I do believe that every individual has the right, no matter how complicated others might imply that it is, or how little they may understand of it, to control their own destiny.

    Now…. I’ll back track a bit. HOPE…. There’s the kicker!
    When is it time to give up and move on, so to speak? HOPE is another thing that humans have an amazing ability to conjure up and to use as a support during even the most dire circumstances. So, when do you give up hope? When does one decide that absolutely nothing more can be done to improve whatever situation has burdened one to the point of wanting out?
    I don’t know. People have awakened from decades long comas. Missing children have been reunited with their families after years and even decades have passed. Justice has been rendered after years of uncertainty. Why not healing? Why not, at least, improvement?

    If the question is, should elderly loved ones be on life support at the end?……Well, again, I suggest that the situation there is more often about the families inability to let go, than the terminally elderly’s willingness to let go.
    But if the question is, should I have the right to terminate my life in the interest of my own comfort? Then I suggest that I do have that right……BUT, as long as even the most remote hope exists, I choose to fight for my life.

      • Don Bay on September 29, 2014 at 18:01
        Author

      Yes, we have gone over this in past blog pieces. In the interim, I have given considerable thought to the question, not least because of exchanges I have had with my family and a psychologist friend. After all this thought, I have reduced the issue to…Who is the most selfish? This has been discussed in this piece, so there’s no need to go over it again. Summed up, it seems to me that those who would determine my fate—however well-intentioned and sincere they may be—are not in my body. Put another way, each individual (assuming sanity) has the right to determine his/her own end. That aside, I must add that as things now stand, I have no intention of ending my own life. This was written to stimulate thought.

      To me, it’s not a matter of comfort in making the decision, but one of simple squeamishness and pain. I don’t want blood all over the place and I don’t want to die in agony. That’s where the cowardice lies. I want a quiet and painless death like that given by a sedative overdose such as that given under the proper conditions by the Dignitas organization.

      “Hope” is for those who want to believe that there’s a possibility of survival. There are an untold number of situations where the hope is in the heads of the loved ones or the doctors. The individual wanting to end life may have no hope or may simply be making the logical and entirely rational determination that death is more desirable than a reduced quality of life. In my view, that individual should be the sole determinant.

      I suggest that you read what I wrote to Donna, particularly about the “Maybes” such as a cure, getting better or changed circumstances. Sure, people have awakened from comas after years and there have been reunions after all hope has evaporated, but betting on such eventualities is speculative at best. They are “Maybes” that most often give way to reality. And assuming you have read all my blog pieces, you know what I think of American “justice.”

      To end all this “Should he…” or “Shouldn’t he…,” you know where I stand on the issue. The important thing for everybody is, Where do you stand? Regardless, I recommend you have this discussion with your loved ones so they understand clearly where you stand..and write a “living will” that everybody can have. Protect yourself!

  2. I have long believed each person has the right to end her/his life. My wife knows that under no circumstances should I be kept on wires and tubes just to keep the body alive after my brain function is gone. I trust her to honor that. And this seems self-evident. I have the right to specify this, and that right is absolute.

    But let me pose a hypothetical situation to illustrate another aspect. Two people have been cast onto an island. There is no hope of rescue. They have lived there for years, finding food and shelter. They are companions and depend on each other for that. Now one of them has a situation, accident, etc. that makes life seem not worth living. But if s/he now decides to die, the other person is left alone for perhaps years. Ending one life makes the other life much less worth living, maybe not worth living. The well person asks the other person to stay alive. Is the right to die absolute in this circumstance?

    Segue to two very old people in any city, who are essentially alone except for each other.

    Segue to a single parent with children still dependent.

    And so on. We live in community, and caring for the others in the community is part of our responsibility. Maybe staying alive does in fact make life worth living in these situations, but maybe not. Is the right to choose death still absolute?

    And the right to choose death has another nasty side. It has been said that suicide is meant to kill two people, the one who dies and the one who is left with the guilt, shame, etc. Is the right to choose death ever totally free of this side? “My life is now not worth living and I choose to die and you will be sorry that . . . ” I don’t have the answer, but I do have the concern.

    It’s not simple.

      • Don Bay on October 1, 2014 at 18:41
        Author

      As you know, my philosophy of many years is one of personal autonomy. I have dealt with the issue in this blog before and, indeed, in this piece which is both current and germane. Essentially, after much thought, I believe that every person alone has the right to determine his/her own fate (recognizing that circumstances like 9/11 might intrude on that intention).

      Now, as to your first hypothetical, it is unrealistic in several respects and that element alone makes it unanswerable. That aside, I can see no way that the hypothetical would change my view. Presumably, the castaways know each other’s philosophy and would honor that. Besides, the survivor would have to expect that death would come to one of them eventually leaving her/him alone until death came along and claimed the survivor. As I said, the lack of realism makes this hypothetical unanswerable.

      In hypothetical #2, the old couple, this happens every day somewhere in the world. Neither has a guarantee as to which will die first. Assuming that one or both have a philosophy like mine, the expectation is that, barring simultaneous deaths, the survivor will be alone for some period. Adaptation is likely or, if not, an arranged death will take place.

      Hypothetical #3 is generally unrealistic in the sense that a sane mother of dependent children is unlikely to take her own life. Mothers almost universally have very strong emotional ties to their children, so arrangements will have been made for the children. The children wouldn’t just be abandoned. As you point out, at the very least the community would step in to care for the children.

      I have little doubt that some suicides are intended to punish the survivor(s), but in most cases the suicide relates to a physical or mental problem. Guilt and shame are possible in many suicide cases, but those emotions are always inappropriate and wasteful, bordering on the pathological. In normal circumstances, grief is to be expected for some period. Anger, too, may be part of the process, but even that will usually diminish with time. Life goes on.

      After giving considerable thought to the issue as well as to your hypotheticals, I have come out believing that each person has responsibility for her/his life. That may sound cold, but as an individual whose life is dedicated to rational thought (as well as to reality), how can it be any other way? To let others determine how I should live my life is to make me a mere puppet. We are not puppets, we are humans who must take responsibility for how we live life.

      By the way,”suicide” has such a negative connotation. The ending of a life can take many forms, but the ending of a life by other than natural means (excluding, for example, war and accidents) does not necessarily amount to suicide. Think about that as you weigh the end of life. And life goes on.

    • Marilyn on October 1, 2014 at 18:47

    I believe I have the answer!
    If you want to die at home…don’t go to a hospital or a nursing home.
    Hire a nursing student from a nearby college to live at your home, rent-free. She can sign the proper document that she will agree to your directive to NOT allow you to be taken from your home. If death is imminent, have the sedative overdose on your nightstand. An individual has choices and should feel confident about the choice to die when they are ready.
    As long as I go where my friends are (heaven or hell) I really don’t care about the unknown after I die! Seriously, as long as I’m invited to my nursing student’s parties in my basement, I’ll be content 😉
    A living will, sedative pills on the bed stand, and a firm resolve are key components to this serious decision.

      • Don Bay on October 2, 2014 at 15:37
        Author

      The party in the basement and the live-in nurse sound good, but the lawyer in me worries that the nurse may be prosecuted for her part in the plan. Are you sure that you won’t get bored if you have eternity together with your friends? On the other hand, maybe you’ll meet some new and interesting friends at a party in some celestial basement.

  3. Personal autonomy. I assume in this case it means I have the right to decide the time and circumstances of my death. I agree. But does anyone else in the universe have a bearing on how I exercise that right?

    Go back to the old saw, I have a right to swing my arm as long as it doesn’t come into contact with anyone else. I have a right to take my own life but it is my responsibility to understand that others may be affected by that decision. Choosing to die by jumping in front of a car is exercising my right, but it is irresponsible because it will affect the driver of that car, who may also be killed by losing control of the car.

    All my cases are the same case, and though you say that two are unanswerable you do in fact answer them.

    On the island are two 23 year olds. When one decides to die s/he condemns the other to perhaps 60 years of being alone, or puts the other to the necessity to also decide to die. Can the one stay alive for another hour, or day, or month, or year because s/he cares about the other? Does dying mean that the other can no longer get food or warmth? And please don’t say the island case is unanswerable because it is the case that there are many situations in cities and towns where the same situation will prevail. I just isolate the island situation to make the case simple.

    Yes, the old people know that one will probably die before the other. My wife is younger than I and she knew from the beginning that I will almost certainly die first. But does that mean she isn’t impacted if I decide to die now instead of the expected extra decade? And does that matter to me?

    You say “That may sound cold, but as an individual whose life is dedicated to rational thought (as well as to reality), how can it be any other way?” The problem is that this sentence leaves out love and caring and responsibility. Once again, we live in community, and community matters.

    And this doesn’t mean for a second that I give up my right, which I may well decide to exercise.
    It just means that the decision is filled with complexity.

      • Don Bay on October 2, 2014 at 16:38
        Author

      Hypotheticals are so unrealistic that I should have left it at “unanswerable.” It’s better that I speak for myself free from the limits of a hypothetical.

      This issue is one to which I’ve given tons of thought over many years, but the operation in 2011 added a whole new dimension: physical impairment and not just mental impairment. See my earlier pieces on that point. As you point out, the issue is complex and definitely personal to the individual involved. I can speak only for myself, not for others.

      This and an earlier piece dealt with the matter of selfishness. Who is being selfish in this matter, the person who suffers the impairment or someone else who has a view in conflict with that of the sufferer? I mention the puppet analogy that I believe is appropriate to this situation. Certainly, I didn’t just pull this out of my left ear recently as my loved ones can attest if they bothered to read my short autobiography sent several years ago. The only recent development is the addition of the physical impairment that is attributable to my not having considered how a serious and permanent physical impairment can make life less desirable, particularly for a person of advanced age.

      I have explained my philosophy repeatedly to my loved ones as well as mental health professionals until I’m blue in the face. As to the loved ones, the conflict is irreconcilable: they are totally opposed and want me to await a natural end.
      I would be lying if I said I’m not really bone tired of this impairment after three years of fruitless looking for improvement. I’m not depressed or mentally deranged. I’m just tired of, “You’re getting better” when I’m not.

      I said it sounds cold, but in keeping with my personality and philosophy, it’s not cold at all. Were I to shuffle off this mortal coil in accordance with my own wishes, it is reasonable that there would be some anger along with the expected grief, but in normal human beings (which all are) both emotions will grow less with the passage of time. That’s reality. May seem cold, but it’s not since I deeply love all of them and have given considerable thought to how my situation is a burden to them. Rational, it is; cold it isn’t.

      Hypotheticals are great at fostering thought, but this is reality. Not easy to swallow, but each of us is different. Life would be so boring if we were all alike. Stay well as long as you can.

  4. And in fact your situation is not at all similar to my hypotheticals, in both aspects. You have a very real physical impairment that I honor and I pray that I never experience anything like that. And your loved ones are not old and terribly needy. They would survive while missing you greatly. I was making the case for the extreme situation in order to make the point.

    I acknowledge your situation. And I confess that I would miss you greatly. And it’s still your decision.

      • Don Bay on October 3, 2014 at 09:59
        Author

      Hypotheticals make us think, and that’s always good, so thank you for your hypotheticals. As I said, I have given this considerable thought over the years and particularly since 2011, but your hypotheticals led me to vent…maybe more than I should have.

      As tired as I get over this—and “tired” is the appropriate word—circumstances are such that it looks like I’ll be hanging around (and possibly even writing this blog) until the Grim Reaper comes looking for me. Nevertheless, thanks for your kind words…and those hypotheticals. You have given me hope that there are at least a few people who relate to what I have written. Maybe we have gotten some readers to think about an uncomfortable subject…and that ain’t all bad.

    • Lionel Burt on October 3, 2014 at 22:22

    I wholeheartedly agree with your point of view excerpt for the fact that I think Robin Williams could have been more considerate in offing himself if he did it in a way that someone else does not have to “clean up his mess”. Leaving one’s dead, bloody and blue-faved body hanging from a rafter is the ultimate act of LITTERING. Robin had the resources to do a more considerate job of ending his life.

      • Don Bay on October 4, 2014 at 17:26
        Author

      Robin Williams’ suicide was reportedly driven by his depression arising out of his view that his condition would subject him to, among other factors, the indignity of having to be cared for by others (not least his wife) as well as the diminution in his quality of life. Your exaggeration of the appearance of his body leads me to believe that your comment was written with tongue-in-cheek. Shocking, no doubt, but “littering” is about as far from the truth of his death as it could be. His manic levity will surely be missed by many of us. You, too, unless I mistake your marvelous sense of humor.

    • Linda on October 8, 2014 at 01:03

    I don’t know how I missed this blog, but I did and I will preface my blurb with the fact that my mother’s life is not complicated by the more severe health issues like you experience, Don, or perhaps some of your readers. My thoughts are mostly related to her and I’m not sure how they relate to anyone with complicated health issues. In any case, quality of life enters into my mind almost daily because I live with and care for my 96 year old mother. I know that if she were in a facility, she would not get the kind of individual attention or immediate care that she receives living at home. She walks daily with my help or the help of her caregiver. She has social interaction because she is taken to a senior center where she participates in an exercise class and a singing class. She gets together with her younger siblings every so many months for lunch. Our friends are accustomed to us bringing my mother with us when we meet them for dinner. We take her shopping. We take her on our errands. She “steals” her 3 year old great-grandson’s snacks away from him and when she is caught, holds on strong to her cane as he tries to take it away from her as she did his snacks — their tug of war. Reading this, you might say her life is good and full and it is.

    Still, I confront the issue of quality of life every day when she says simple things like “I want to go to bed.” Do I make life easier for her and help her stand, lead her to her room, undress her, and get her washed up or do I take the more tedious route of finding ways for her to continue to function on her own, exercising and stimulating her body and mind? She is, after all, 96.

    It is a painstaking routine I do over and over encouraging her to stand on her own and to help her figure out where she changes her clothes and where she sleeps. It would be much easier for both of us if I just did everything for her. I have discussions with myself about whether her discomfort for the moment – whether feeling my frustration– is still better for her than doing everything for her. Is it better to take life easy, eliminating the challenges which may cause stress, knowing that lack of physical and mental exercise will help atrophy her body and mind quicker? Does that really matter? She is, after all, 96.

    When I was in college, my mother told me she would rather live in a facility than be a burden to her children. Some of my siblings would want to remember her saying this as if this is what she prefers today. When we moved in with her she was ecstatic and clearly wanted this to be a permanent situation. If you asked her today or even if you had asked her six years ago when she was present, I can guarantee that her answer would be no, she wants to live in the house she has lived in since 1950 until she dies. Quality of life is a consideration of how we live even if it is at the end stages of life. Balancing the fine line between doing too much and not enough is not always clear.

    I think some might say they would never want to live to be in their 90’s if they were not present, but my mother is not always present and yet I don’t see that she does not want to continue to live. It is hard to get up but she still likes to see herself dressed and wearing lipstick. She has changed and is not the same person I grew up with; she isn’t even the same person from six months ago. What I think I am trying to say is that what we might assume would be our choice today, may not be the same in the future. What we think we might emphatically want tomorrow, today, may not be the case as unbelievable as it may seem….today.

      • Don Bay on October 8, 2014 at 17:43
        Author

      You deserve a big hug and lots of love for what you’re doing for your mother, as stressful as it must be for you. Part of the reason your Mom is still getting about at 96 (aside from the genetic component) is that you are keeping her life interesting and encouraging her to be self-sufficient. By engaging in stimulating activities and remaining in her home, her will to live continues regardless of earlier pronouncements.

      Quality of life varies from individual to individual. By doing what you are doing, sometimes in the face of grumbling from your siblings, your Mom is benefitting from your compassion while many elderly people are left to fade away in some impersonal environment. Her quality of life is enhanced and, at some deep level, odds are that she appreciates your being there for her. I hope your sibs will recognize that and quietly commend you for it. As the Aussies say, “Good on ya, Linda.”

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