What Are the Odds?
Monday June 08th 2009, 2:17 pm
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Dan's PostsIn a change from my usual essayist style, I’ve pasted in, below, an excellent article from the New York Times on the strange bedfellows of probability and randomness.
As many of you know, I’ve long taught (as was pointed out to me by my friend and colleague Dr. David K. Reynolds, author of Constructive Living), that we can control our efforts, not the outcomes. By making a good effort, however, we increase the odds of getting (closer to) our desired outcomes.
Nassim Taleb, provacateur, iconoclast and original thinking (and author of Fooled by Randomness and The Black Swan) who lives and writes in the worlds of both mathematics and economics (the stock market), is quick to point out the random rather than predictable nature of the stock market and of life in general. Themes echoed in the following article:
MAY 22, 2009, 10:00 PM
What Are The Odds?
By THE EDITORS AND LEONARD MLODINOW
As a physicist at California Institute of Technology and the author of many books and articles, a number of them on the science of probability, Leonard Mlodinow spends a lot of time considering the question, What are the odds?
For instance, what are the odds that a single person might write — as Dr. Mlodinow has — a paper titled “Pseudo-spin Structure and Large N Expansions for a Class of Generalized Helium Hamiltonians,” a best-selling book with Stephen Hawking and at least one episode of “McGyver.” (Answer: Pretty low.)
Dr. Mlodinow has a particular, and personal, interest how the most painful events can sometimes yield unexpected results. In the first chapter of his best-seller, “The Drunkard’s Walk: How Randomness Rules Our Lives,” he writes of a conversation with his father, who tells him of how he came to survive his time in the concentration camp in Buchenwald:
It struck me then that I have Hitler to thank for my existence, for the Germans had killed my father’s wife and two young children, erasing his prior life. And so were it not for the war, my father would never have emigrated to New York, never have met my mother, also a refugee, and never have produced me and my two brothers … The outline of our lives, like the candle’s flame, is continuously coaxed in new directions by a variety of random events that, along with our responses to them, determine our fate.
He answered the following questions via e-mail:
An earlier post by the psychologist Daniel Gilbert makes the argument that uncertainty — not knowing what misfortune will come — makes people more unhappy than misfortune itself. Do you find that to be true?
It does seem to be true of my own psychology. Also, I find that what’s most important, whatever happens, is how you deal with it. And once something bad actually happens, you can start that process, and bad can eventually even turn into good.
Many people are understandably anxious and depressed about their present and future situations. Based on what you know about predictions and human behavior, should they be?
I find that predicting the course of our lives is like predicting the weather. You might be able to predict your future in the short term, but the longer you look ahead, the less likely you are to be correct. In my own life, many things that seemed to be very bad at first actually had good consequences. For example, just as I had begun making a living writing in Hollywood many years ago, the Writer’s Guild called a strike. I thought it was awful for my fledgling career, not to mention financially ruinous. But as it turned out, the strike gave busy producers a chance to catch up on their reading, and the day the strike ended I got a call from the show runner at “Star Trek: the Next Generation,” who said he read a “McGyver” script of mine he had found lying around, loved it, and wanted to hire me on the show’s writing staff. It was a plum job and a boost to my career, and it would have never happened if not for the strike.
So I try to relax, and work on making the best of whatever develops, rather than worrying about how awful it is.
In times of crisis, such as this one, are most people able to accurately predict the outcomes of situations? Or do they tend toward too much optimism or too much pessimism?
“As someone who has taken risks in life I find it a comfort to know that even a coin weighted toward failure will sometimes land on success.”
I don’t think complex situations like this one can be predicted. There are too many uncontrollable or unmeasurable factors. Afterwards, of course, it will appear that some people had gotten it just right: since there are many people making many predictions, no doubt some of them will get it right, if only by chance. But that doesn’t mean that, if not for some unforeseen random turn, things wouldn’t have gone the other way.
The social historian (and socialist) Richard Henry Tawney, wrote, “Historians give an appearance of inevitability… by dragging into prominence the forces which have triumphed and thrusting into the background those which they have swallowed up.” And the (neo)conservative historian Albert Wohlstetter said it this way: “After the event, of course, a signal is always crystal clear. We can now see what event the disaster was signaling … but before the event it is obscure and pregnant with conflicting meanings.”
In some sense this idea is encapsulated in the cliché that “hindsight is always 20/20,” but people often behave as if the adage weren’t true. In government, for example, a “should-have-known-it” blame game is played after every tragedy. In the case of Pearl Harbor, for example, seven committees of the United States Congress delved into discovering why the American military had missed all the “signs” of a coming attack. One of the pieces of evidence cited as a harbinger recklessly ignored by the U.S. Navy was a request, intercepted and sent to the Office of Naval Intelligence in Washington, that a Japanese agent in Honolulu divide Pearl Harbor into five areas and make future reports on ships in harbor with reference to those areas. Of special interest were battleships, destroyers and carriers, as well as information regarding the anchoring of more than one ship at a single dock. In hindsight , that sounds ominous, but at other times similar requests had gone to Japanese agents in Panama, Vancouver, Portland and San Francisco. [The analysis is most famously laid out in the 1963 book, “Pearl Harbor: Warning and Decision,” by Roberta Wohlstetter, who was married to Albert, noted above.]
In addition to the intelligence reports that in hindsight seem to point toward a specific attack, there is also a huge background of useless intelligence, each week bringing new reams of sometimes alarming or mysterious messages and transcripts that would later prove misleading or insignificant. In advance of the event, you can’t tell one sort from the other.
It is hard to say whether people are too optimistic or too pessimistic. That depends on the person. But we should keep in mind that it is easy to concoct stories explaining the past, or to become confident about dubious scenarios of the future. We should view both explanations and prophecies with skepticism.
Should emotions — despair, anger, happiness — play a part in the decisions people make in their lives? In other words, should our feelings matter?
Of course our feelings matter. But emotional decisions are usually not the best ones. On the other hand, your emotions can affect your decisions whether you like it or not because the effects can occur on the unconscious level. One study even showed that subjects holding a hot cup of coffee judged people differently than subjects holding a cold cup. In my case, that effect wouldn’t have been unconscious, though. I know that cold coffee makes me grumpy.
A recent news story about treating cancer told the story of one woman — a non-smoking vegetarian who exercised and had little incidence of cancer in her family — who was shocked by her cancer diagnosis. Was her reaction — and others like it — reasonable? Does “living right” work against the odds that illness or misfortune will strike us?
Assuming one is correct about the proper way to “live right” — and I’m not convinced that a straight vegetarian diet is the healthiest — it is possible to decrease the odds of bad outcomes, but that doesn’t mean they won’t occur. Anything that is possible eventually will occur, which means that some healthy-living people will get cancer, and some chain smokers won’t. I once read a story about a church group that was supposed to meet at a certain time. Ten minutes after the appointed time, due to a gas leak, the church blew up. If they had not showed up late, all 10 would have been killed. Some see that as evidence that God was watching over them. Others might conclude that you should always show up to church late. All I learn from that is that it is a big country, and if you ask around enough, you’ll hear some pretty improbable stories.
Another example, which I analyze in “The Drunkard’s Walk,” is the time Roger Maris, a very good but not great player, broke Babe Ruth’s beloved record, hitting 61 home runs in 1961. Maris had never came close to that output before, nor did he after. What happened?
We all know that players will hit a few more home runs than usual in some years, and a few less in others. But the mathematics of chance also predicts that some years they’ll hit a lot more, and some years a lot less. Those large fluctuations are rare, and wouldn’t be record-breaking for most players, in any case. But the historical statistics of baseball show that there were enough players with excellent, but sub-Ruthian, ability that over the years that it was probable that, by chance alone, one of them would have a single standout year in which they tie or break Ruth’s record. In fact, every stand-out record in any sport that has ever been analyzed has always been found to be consistent with the patterns produced by random fluctuations. Performance over time comes mainly from talent and practice. But achievements that stand out from an athlete’s usual performance — hot streaks or record years — happen with patterns that match the patterns of chance. Just wait long enough, and strange things will happen.
Can a full understanding of the probability of certain outcomes help reduce anxiety? For instance: would knowing the statistical frequency (or infrequency) of plane crashes help someone overcome a fear of flying? Would a smoker knowing the actual odds that he will get cancer make him less fearful of that outcome? In short, do we worry too much, or too little?
My mother worries too much. Some say I worry too little. I guess that shows a) that one cannot say “we” worry too much or too little, and b) that whether an individual worries too much or too little is not 100 percent inherited from your mother.
I was once on a plane that experienced so much turbulence that when I looked out the window, the wings seemed to flap up and down like a bird’s. I noticed, also, that the woman in the window seat next to me looked pale and terrified. Personally, I took comfort in knowing how many miles planes fly through heavy turbulence without any problems at all. So I explained to the woman how planes were designed to withstand such conditions, and told her the slim odds of anything bad happening. When I finished, she turned away and reached for the barf bag.
Some people take solace in an understanding of their environment, others don’t. For me, an understanding of the role played by chance has taught me that one important factor in success is under our control: the number of at-bats, the number of chances taken, the number of opportunities seized. As someone who has taken risks in life I find it a comfort to know that even a coin weighted toward failure will sometimes land on success. Or, as I.B.M. pioneer Thomas Watson said, “If you want to succeed, double your failure rate.”
Leonard Mlodinow teaches randomness to future experimenters at Caltech. His books include “The Drunkard’s Walk: How Randomness Rules Our Lives” and “Euclid’s Window: The Story of Geometry from Parallel Lines to Hyperspace.” More of his writing and information about his work can be found at his Web site.
Watch Leonard Mlodinow’s 2008 Authors@Google talk.
Copyright 2009 The New York Times Company
NYTimes.com 620 Eighth Avenue New York, NY 10018
My thanks to the New York Times and Leonard Mlodinow for this significant and eminently readable article about an issue central to our lives, beliefs and philosophies.
On Suicide
Wednesday May 13th 2009, 12:29 pm
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Dan's PostsSome years ago, poet-writer Sylvia Plath, who suffered from Bi-Polar discorder, took her own life — a loss to her loved ones and to the literary community. Anyone who has gone through the tragedy of losing a parent or brother or sister or friend in this way is reminded of the precious and ephemeral nature of our lives here, and the gift of each day even when those days are difficult.
When someone takes their own life due to despondency, depression, disappointment, anger or passion, or any other emotional impulse — especially when it is a young person — it seems to me a tragic waste, a permanent and irreversible "solution" to what is usually a temporary problem. (See article on the founder of suicide hot-lines that have prevented many needless and premature deaths.)
But in the case of people suffering from a terminal and debilitating illness, there may well be instances where choosing the time and place of a "final exit" may be a reasonable option to consider with care and respect.
Dalai Lama, a monk dedicated to non-violence, was once asked whether he might kill another human being. "Perhaps," he said, "if it would save a hundred lives." I cannot say for certain whether this quotation is accurate, but it nonetheless points to a truth that nothing is always good or bad — even actions that most people consider wrong may be appropriate or necessary in particular circumstances.
Many, if not most religions consider suicide a sin. Suicide is illegal in many places, including the United States. Such laws have always seemed paradoxical (if not ridiculous) to me, since the idea of "breaking the law" is not likely to dissuade a severely depressed person, and the dead are not likely to be prosecuted. Yet the absolutists among us continue to make statements such as "killing is always wrong" and apply the same ethic to suicide. Libertarians, in contrast, might suggest that taking one’s own life "hurts no one else" (at least physically) and therefore, each of us has this right.
Whether we have the right to take or life can be debated by theologians and philosophers. Whether we have the ability to do so is not open to debate.
Whatever our beliefs or views, most thoughtful, compassionate people can cite instances where taking one’s own life may be fully justified and understandable.
Now let me bring these general observations down to earth with a specific case-in-point — about my own mother — and then with other true-life (and true-death) stories and comments.
My 84-year-old mother, suffering from the effects of a 50-year smoking habit, severe osteoporosis and arthritis, and complications from taking prednisone (a steroid) to help her breathing, took her life — or tried to — followed by a protracted dying. Mom had always possessed a great sense of humor, and loved to laugh. She had a quick and bright mind, and she took pride in her musical and mathematical abilities. She loved, and was loved by, my father — they had been married more than 60 years.
My father’s health at 90 was excellent — except for growing dementia and Parkinson’s symptoms. Mom used to say, "With my mind and your dad’s body, we’re doing great!"
Then she began to experience growing symptoms of emphysema — the coughing, wheezing, gasping for breath — then she fell and broke her hip (or her weakened hip broke and so she fell — such cases in the elderly are not uncommon). Mom sunk into a weak and debilitated state, understandably depressed.
Life became a day-after-day misery. She could no longer take care of my dad or herself and things were getting worse. Hope was long gone. All she had to look forward to was increasing infirmity. My parents had moved from an apartment and into an assisted living facility. Then there was talk of having to move her to a nursing home, and to be separated from her husband of nearly 60 years.
My parents lived far from us but closer to my sister, who called me one evening to tell me that mom had taken sleeping pills and was unconscious. Left alone, she would have quietly passed on. But even though she had a DNR (do-not-resuscitate) order in her Living Will, the facility was required to call the paramedics, who revived and intubated her and took her to a hospital. I flew to Los Angeles to join my sister who was standing vigil at the hospital. My mom’s first words to me were: "I love you." Her second words were, "I want to die." Under the circumstances, we understood and respected her wishes. She had lived a good life until the past few years. Now she wanted to go. She might have died quietly without the benign interference of those doing their duty to "help."
We asked the doctor to remove the IV (intravenous) line that was hydrating her and helping to keep her alive. Since my mom had been begging him to do the same, it was done. She ceased taking any food or water. Gradually, slowly, her kidneys and other systems began to shut down. It took two weeks, with some medication to ease her passing, before she died.
Some say that suicide is a selfish act, even a cowardly one. But I don’t feel that way about my mom’s dying. It was her right and her choice. In some cases, the suicide of a parent, a child, a sister, a brother, a friend, can inflict bring great sorrow and psychological suffering to family or friends who grieve that loss. Our actions, even though they may seem to affect only us, touch others.
Some people may take their life to escape acute emotional pain, or because they see no meaning in life (not realizing that life can turn on a dime and get better, much better, in a week, a month, or a year’s time). So in many, if not most, cases, it is far better to to stay alive, tough it out, face the music, accept the consequences, live and learn and live some more. Yet, there are other times . . .
The debate about whether, or at what point, suicide becomes a reasonable, compassionate, even admirable choice, continues. Some say it is always our right. Some say never. Some suggest procedures and processes to determine whether or when it might be legal or acceptable.
Most of us agree in the rightness of living fully until we die. And everyone dies of something: accidents, illness, old age and just wearing out, like an old car whose fuel or electrical system goes on the blink. Is it for us to choose our own time and place? That is a question only we can make for ourselves.
There are stories of people with hugely debilitating conditions — having no arms or legs, massive paralysis — who continue to live, be productive, and inspire others about the precious nature of life. Each day is another day to learn, to grow. Perhaps it’s all about the soul’s evolution.
Let me reiterate and make clear: Suicide to escape troubling thoughts or emotions (including depression) is a tragic waste of life. Like dropping out of school too early. But there are times, for purely physical reasons, as in the case of terminal, debilitating illness or other condition — that if someone has decided, after an extended course of deliberation (rather than on impulse) decided to end their life at a time of their choosing, others should honor (or at least accept) that choice.
What follows below — for those who may want to read more — are some well-written material on this topic, followed by comments by readers of the article below. Please feel free to offer comments of your own to this blog post.
Dan
A Mother’s Death - Exit by Choice
Reated links:
http://well.blogs.nytimes.com/2009/01/28/choosing-your-own-exit/
http://open.salon.com/content.php?cid=78371
The New Old Age | Caring and Coping
December 15, 2008, 10:30 am
What an End-of-Life Adviser Could Have Told Me
by Jane Gross
If only I’d had the 800 number for Compassion & Choices in the last difficult months of my mother’s life. She was paralyzed, incontinent and unable to speak. I watched the light leave her eyes and her body crumple like a rag doll’s, and I knew that one day soon she would say, “Enough.”
During this period, my mother and I talked and talked and talked about her end-of-life choices, as we had for many years. A decade earlier the conversation had seemed totally academic, even a bit weird. But now we were both grateful that this was familiar territory. At regular family meetings at the nursing home where she lived, the social workers, nurses and doctors joined what had been our private dialog. Our willingness to look my mother’s certain death squarely in the eye, they said, was both unusual in families and beneficial to her quality of life.
Despite my mother’s helplessness and misery those last months, she wasn’t dying of anything. She had a garden-variety set of ailments for an 87-year-old woman: high blood pressure, diabetes, arthritis, an inner-ear disturbance. A series of imperceptible strokes, known as T.I.A.’s, had left her body useless. But they didn’t necessarily portend a deadly event. She’d dodged the bullets of cancer, serious heart or pulmonary disease, and dementia. It is not uncommon, having lived past 85, to keep on living for a very long time — “healthy” in the narrow sense of the word, but increasingly incapacitated. That, alas, was my mother’s fate.
She often longed for the oblivion of Alzheimer’s disease. But her sharp mind — she never skipped a beat — entitled her to organize her own death, within legal limits, which she did by deciding to stop food and hydration. We had discussed and researched this option, and we had read enough to be reasonably confident this manner of dying was not a frightful ordeal but rather a gentle death. We trusted that an enlightened nursing home like the one she was in wouldn’t force her to eat and drink. They had readily accepted earlier decisions to forgo diagnostic tests or hospitalizations, and later antibiotics for pneumonia.
Our study of what is known as V.S.E.D., or “voluntarily stopping eating and drinking,” was impressive for amateurs, if I do say so myself. My mother had a pretty good death, on her own terms, and we had the nursing home’s full support. I’m proud and grateful to have been able to advocate for her and to have been by her side. That said, there were several rough patches. And after recently meeting Judy Schwarz, the patient support coordinator for Compassion & Choices in New York, I now can see we’d have had an easier time of it had she been along for the ride.
What follows are a few of the bumps in the road that I bet would have been smoothed with her expert guidance.
* Medical professionals can only guess how long it takes to die of dehydration. (Merely refusing food is a bad idea, as many people who have gone on long hunger strikes can surely attest.) My mother’s nurses and doctors said she’d likely last four, five, six days — a week at most. With that in mind, I settled into a recliner in her room with books, music, snacks and a few changes of clothes, and I intended to stay by her side, as promised, for the duration.
In fact, she lived for 13 days, alert and communicative for about a week and manifesting none of the signs of impending death until the last 36 to 48 hours. Why the discrepancy? People in my mother’s robust condition rarely make this choice. It is typically how people die in the end stages of cancer or Alzheimer’s disease, following a progressive loss of interest or ability to eat and drink — not an abrupt dinner-yesterday-but-no-breakfast-today-thank-you-very-much announcement. I don’t know if my mother experienced time as I did, but to me it felt interminable. To my shame, I did a lot of clock-watching. Eventually I went home at night, leaving behind a private-duty aide.
I doubt I’d have twitched with impatience, just wanting for it to be over, had I known that the average dying time is two to three weeks, as the scientific literature says. Judy Schwarz would have told me that. I think the days would have been more peaceful and contemplative had I not been surprised by how long it took.
* Several of my mother’s caregivers, both nurses and aides, had moral or religious reservations about her decision. To their credit, they didn’t just switch to the other side of the floor. They came to me, in tears, to say this was something their consciences would not permit. They visited her several times a day, but delegated the hands-on responsibilities to others. At the time, I admired their honesty and felt their hurt and love, but I wondered if this behavior was appropriate. Shouldn’t they be able to leave their personal convictions at home?
The answer, I now know, is that they followed the canons of their profession perfectly: no health professional is required to participate if that violates a personal belief system. What they are required to do is ensure a smooth hand-off to someone equally qualified.
* During and after my mother’s death, I was often stung by the implied or expressed judgments of friends, colleagues and even strangers after I wrote about the experience. “You let your mother do that?,” I was frequently asked, with the word “let” heavy with opprobrium. My answer, generally, was that it wasn’t up to me. She was mentally competent and entitled to do as she pleased. My job as her daughter was to be supportive. Left unsaid, once I’d experienced the first episodes of shock and disapproval, was that I totally agreed with her. Expecting the reaction of others would have helped.
* Once my mother began her fast, the nursing home offered two ways to ensure her comfort. The regular staff could stay in place, keeping her mouth from getting too dry and administering sedatives as needed under the supervision of a palliative care physician. Or a team of hospice professionals, part of what was then a new collaboration with the nursing home, could take their places at the bedside. I opted for the familiar. My mother didn’t warm easily to strangers, and I thought she would need the comfort of people she knew well.
A counselor like Ms. Schwarz would have told me that the regulars might ask to be taken off the case, which might have changed my mind. She also would have told me that a hospice team likely would medicate my mother more aggressively, given their training in cutting-edge comfort care. Even if I’d stuck to my plan and later wished I’d chosen hospice, Ms. Schwarz would have suggested a change of course. It never occurred to me that was possible. I was too tired to think straight.
* I have always assumed that what my mother chose to do herself, I could have insisted upon for her, as her health care proxy. In other words, if she were no longer “decisionally capable,” though not on the brink of death, I could have told the staff to stop spooning food into her mouth or bringing the straw to her lips, and they would have listened to me as her surrogate. Ms. Schwarz would have told me this isn’t so. Other end-of-life experts are less certain but know of no test cases. From that I conclude that V.S.E.D. should be considered a viable option only for cognitively intact men and women. Maybe that’s why it’s called “voluntarily stopping eating and drinking.”
To arrange for an end-of-life consultation with Compassion & Choices, with chapters nationwide, call 800-247-7421.
Comments:
This is just too difficult for me to read through and bare. My heart is racing and I am sweating profusely. I lost my mother in July in much the same way and I did not realize how I have not come fully to terms with her death until I read this. I think of my own mortality and how I will pass on and it frightens me. Did I give my mother enough? who will be there with me?
— Jeff
After being diagnosed with an inoperable brain tumor, my mother also chose V.S.E.D. as her preferred way of dying. While I am sure that many others made similar choices back then, it was quite taboo to talk about it openly in 1984. I recall vividly the consternation and condemnation from otherwise well-meaning family, friends and health care workers. Would that I had access to the compassionate wisdom of Judy Schwartz.
— David
Thank you, Jane Gross, for your public service in writing about end-of-life decisions for elders. You and your mom were served well for the most part; however I am disturbed by the way you were approached by nursing home staff once you were on course for end-of-life. I direct an ombudsman program in western Massachusetts. It is federally funded as a neutral advocacy program for long-term care facility residents.
Two years ago, I was contacted by a psychiatric social worker at our local hospital. She was disturbed that a 90-something year old woman had been discharged to a nursing home where she openly declared she would stop eating and drinking to die. I contacted the facility administrator, and she explained to me that this woman was mentally intact and that her body was beginning to fail in the general ways described by Jane for her mom. She had survived her husband and had a productive life for years after his death.
This resident’s son is an academic who has researched and written about the right to die. Ironically, he had a more difficult time with this than his mom. One never knows how one will feel in this circumstance until we are faced with it. The son respected the mom’s wishes despite his pain.
Hospice care was set up at the nursing home. The administrator supported the resident’s wishes.
When I contacted the hospital to discuss the ethical and legal right of this person for self-determination, I was told that I was not qualified to understand this person must have depression that could be treated and that she could not choose hospice without a terminal illness diagnosis. Several staff members there took offense to my suggestion that one may choose to die without any form of untreated mental illness or hopelessness.
At the nursing home, the staff was split. The staff who felt the resident was being “killed” under their watch called me several times to ask for intervention. The administrator, hospice staff, and two doctors continued to support the woman’s wishes. I went in to meet with the resident, and she squeezed my hand affirmatively when I asked if she was being cared for in the way she sought.
Many people enter nursing homes with similar intentions. The difference here is that this woman wanted to be open about it with integrity and education in mind.
The administrator no longer works there. I suspect the conflict in this situation cost her a job and reputation.
My advocacy role was not easy, and there are both hospital and nursing home staff who do not respect me as a result of my support for this resident. I would not do anything differently if called upon again–except that I would take the advocacy one step further and insist that hysterical, judgemental staff members not come anywhere near the room. Their energy was not useful to anyone.
Why is there such fear around choosing death? Perhaps because our western culture represses discussion about it. We will all die. It is a blessing that some of us get the opportunity to be brave and clear. Such peaceful passing should be celebrated, not judged. Thank you, Jane Gross.
From Jane: Yours is one of many “thank you’s” for this post, a reaction I did not expect and find hugely gratifying, not because I think this is the right choice for everyone, or even for more than a few, but because you, and so many other readers, understood my mother’s decision and mine to support her. But I’d like to clarify a few things.
First, with time to reflect and gather information I didn’t have at the time, I thought the staff’s reaction not only appropriate, but professional, loving, respectful and handled with perfect grace. There was nothing in the least bit hysterical or judgmental in their words and deeds. They explained their convictions calmly, were truly grieved that my mother’s life would be shortened as a result and were brave and loyal to come to me and explain themselves and not merely disappear. It was my initial reaction that was unfair and unkind, not theirs — and that was mostly because I, selfishly, needed them at my side. As they were, delegating only certain hands-on-tasks like administering morphine. They were true to their values , which are just as valid as ours. Indeed, several were at my mother’s funeral and remain my friends more than five years later.
Second, you mention that hospice is available only to those with a terminal condition. Once someone has chosen to stop hydration, he or she is, by definition, terminal. I could have had hospice care for my mother had I chosen it. And, for the last few days of her life a hospice doctor managed her medication and helped in all ways possible.
— J.M., Ombudsman
Wow–I have to say this is amazing– After watching in horror my grandparents die one at a time– I can only hope that when I die I am can have this kind of love and dignity.
— Kim A.
Thank you, Jane Gross, for telling this important and personal story. So many of us have been through somewhat similar experiences with our parents and now must make our own end-of-life decisions.
Our mother and father both ended life unable to swallow after years of debilitating illnesses. With Mother, it was advanced dementia, and not a voluntary decision. Yet there was one nursing home aide who seemed shocked that we were not going to intervene to save her life. This reaction comes from a desire to help people, and it should be expected. Fortunately, my brother and I didn’t have to argue with anyone. He had medical power of attorney and the nursing home physician agreed with us.
Father had Parkinson’s disease. Many times, to us and to doctors and nurses, he vehemently stated that he wanted to be left alone to let nature take its course. My brother stopped trying to “help” him and found a hospice where he was well cared for.
From Jane: It isn’t clear to me if you were left with the impression that we did have to argue to get what my mother wanted. Nothing could be farther from the truth. We encountered not a single argument or obstacle, which I’ll forever appreciate.
— Nancy
This is an excellent article. My father also choose to stop eating and drinking after struggling for two years with cancer. He withered away over a three-week period. Thanks to hospice care, I think his death was relatively painless. I have also witnessed the deaths of several pets who were euthanized because of terminal illnesses. In comparing the experiences, I would much prefer the option of ending my life quickly with drugs, rather than having to subject myself and my family to a drawn-out death.
From Jane: Your preference for a quick exit with drugs is widely shared. That said, despite my clock-watching, I found those last 13 days of my mother’s life both rewarding and healing. We both knew, without ambiguity, what was about to happen and that this was our “goodbye” time. Had I thought she was suffering this would have been an indulgence, but she was comfortable most of the time, and her slow passing was not unlike a “natural” death in the way she faded away, rather than being alive one minute and dead the next.
Also, up to a certain point in the process, she could have changed her mind at any time. Water was always within her reach, and meal trays were brought to her door, at my request. I would have supported her in a quicker death, had that been possible, but I suspect I’d have always wondered if she was “sure,” or if she might have changed her mind the next morning if there had been a next morning. This way, with ample time to reflect even after she had made her decision, I had no doubt she knew what she was doing and was determined to stay the course.
— Jesse
The key to this situation is the open communication! As clergy, I deal with death frequently, and the differences in how people handle it are astounding. I prayed my own mother would get to some point of acceptance before she died, a heart-breaking descension into cancer. She would not speak of it and when the reality of it hit her, she cried and took to her bed until the end. I do not say this to criticize but to expound how important being able to discuss your wishes are. As has been stated, we will all die. It is a gift to those we love to let them know our true feelings about it. As survivors we go on, but what comfort to know you honored a person’s truest wish, as best you could.
From Jane: This is based solely on anecdote and not any survey, scientific or otherwise. But in my experience — as a reporter, blogger, daughter, nursing home habituee and friend or colleague to many people with elderly parents, I believe that the reluctance to communicate is more often the adult child’s than the parent’s.
I’ve been told many times by the old and infirm that they wish their children didn’t resist their inevitable death, often with extreme medical interventions, or by dodging any attempt to talk about it. Some have even taped a one-sided conversation or written a letter to a son or daughter in order to be heard. Conversely, I’ve been told by my contemporaries that they were unable or unwilling to broach this subject and ask their parents what they wanted. Since a parent will naturally try to protect their children, regardless how old, in my view it is the adult son or daughter who ought to be giving their parents “permission” to have this conversation by asking questions and demonstrating they aren’t afraid to hear the answers.
As a postscript, to the best of my knowledge my mother never spoke of this in advance to my brother, nor did he broach the subject, and he sometimes beat a hasty retreat when it came up in his presence. She knew it was too painful for him, perhaps because they were so close — far closer than she and I — so she made her plans with me. He was grateful she got her wish and equally grateful not to have been her co-conspirator.
— Marci
I wish I had known this when my father died. It would have been so much easier for him, and my stepmother who despite being a double amputee cared for him at home on two knees nubs. He tried a few more dramatic things, but just couldn’t. I think he could have done this. In spite of the fact her temperature was 103, she could not leave him to go to the doctor. So his doctor prescribed antibiotics for her. It takes a hearty person to care for a cancer patient.
— swp
Thank you for your valuable information. We have a wonderful hospice program in Ithaca NY and they enabled my mother to die in peace at home , at the appropriate time.
The support, both technical and psychological is invaluable.
Linda
During my Dad’s slow death from COPD, he often commented that pneumonia is an old person’s friend. Sometimes living half-a-life is no life at all.
— jma
Some information I found during the difficult period after my alzheimer’s stricken mother had forgotten how to eat helped me honor her written wishes in her health care power-of-attorney document. She had specifically said she never wanted to be tube fed if her other faculties were gone. My research indicated that when a person has lost all other functions, the digestive process has also changed and that physical distress can be caused by putting food in a stomach than cannot digest it properly. In her last week of life I saw a calmness and peace come to her that she had not had for years, and I can’t help but believe that perhaps she was finally comfortable because no one was shovelling unchewed food down her throat.
— Lizette
Perhaps improving how we treat patients at the end of their lives, and emphasing the benefits of the hospice care/palliative care approach may prevent alot of the futility of health care that families feel they have to pursue.
— ash
What was said in this article needs to be communicated often - i.e. that one has a right to make one’s own end-of-life decisions unfettered by the religious and/or philosophical beliefs of others. The fact is - like it or not - everyone will die. What needs to be considered is that how the end should occur is viewed differently among us. While some exhaust every medical treatment to prolong life, others seek just as hard to find a way to end the struggle of fighting off a terminal condition. Who can accurately assess the suffering another endures? And whose needs are ultimately being met when a patient is denied the chance to decide when enough is enough? When faced with the reality of impending death, wouldn’t everyone want to be able to say when and how that death should happen?
As painful as it is for the loved ones of the dying to reconcile with thier impending loss, there emotions must not stand in the way of the needs and the dignity of the one choosing to make the end-of-life decisions. Perhaps counseling should be automatically offered for the living who will have to come to terms with life without the deceased.
Susan
Like the first commenter, Jeff, I too, lost my mother this past July (to heart and kidney failure). My mother, along with her doctor, made the decision to stop treatment, as there would be no cure. As her child, this absolutely broke my heart, but my mother was very much at peace with her decision and ready to go. The doctor said it would only be a day or two. She lived for a full week, cognizant till the last day, of her situation, even saying at one point “this is taking longer than I thought.” Like the writer, we too, watched the clock. My mother’s heart was literally broken, yet somehow, it kept going for a full week. When the dietician came in the day she made the decision, all my mother wanted for her meals was ice cream! The dietician insisted she at least have soup.
My sister and I spoke with her doctor, and he told us that there was a process in place, when we felt the time was right, where they would give my mother a series of three injections, spaced out, that would, for lack of better words, bring things to an end. My mother repeatedly through the years had admonished me to pull the plug should anything catastropic happen to her. So knowing full well how she felt about hanging around if there was no hope, that last day, I gave them the go-ahead. It took about three hours for her to die.
I try not to dwell on the fact that our decision hastened her demise, but I take comfort in knowing that was not only what she wanted, but entrusted me to take care of. I honored her wishes, and that allows me to sleep at night.
— Rhonda
Frankly, I found this article to be reprehensible. To allow a woman in “robust condition” to essentially kill herself while the person’s daughter is in a nearby chair enjoying books, music, snacks, etc., is sickening to say the least - and should be criminal.
It seems like people today are more interested in avoiding “suffering” at any cost. But, who do they want to stop suffering? The patient or the caregiver?
From Jane: I’ve resisted, since this blog began, defending myself to those critical of my views or behavior, lest I be disrespectful of other’s opinions or unduly prickly when criticized. But this time I can’t resist.
I did not “allow” a woman in “robust condition” to kill herself while “enjoying” myself with bonbons and novels. My mother, of sound mind, acute intelligence and the knowledge that came from a career in nursing, made her own choice. To have stood in her way, in my view, would have been disrespectful, patronizing and unloving. Also, while she might have lived for several more years, I surely wouldn’t view her as “robust” when it took two strong men and a hoyer lift to get her out of bed, when she could neither dress, feed or toilet herself and could no longer speak.
As for enjoying what was essentially a 13 day death watch, I can only suggest you sit in a recliner at your mother’s bedside under those circumstances and tell me afterward how much you enjoyed your snacks, music and books. Finally, my suffering, while real and constant, was not the issue; hers was.
— Jim
This is an interesting, thought-provoking article. I do feel obligated to correct the following statement, which is quite simply wrong on every level…
“A series of imperceptible strokes, known as T.I.A.’s, had left her body useless.”
TIAs are not “strokes,” they are usually not “imperceptible,” and they certainly don’t “leave the body useless” or even damaged.
A TIA, or “transient ischemic attack”, is exactly what it’s name implies: part of the brain is transiently deprived of sufficiant blood flow to work properly during the time of deprivation; during that period, depending on where in the brain the TIA is occurring, the patient will experience funny symptoms (part of their body may go numb or weak or clumsy , they may be unable to speak or understand, their vision may be affected, etc etc etc.) Blood flow returns, the symptoms disappear, and MRI of the brain parenchyma shows no lesion in the area responsible for the patient’s symptoms.
TIAs are important warning signs of impending stroke. They deserve an aggressive work-up, including brain MRI/A, cardiac telemetry and echocardiagram, at the very least. The goal is to identify the source of the TIA and institute therapy to prevent a stroke.
I’m guessing that the author’s Mom had a series of tiny lacunar strokes, which - over time - can accumulate to a point where they do cause great overall disability.
From Jane: I can’t quarrel with your diagnosis that my mother had a series of tiny lacunar strokes rather than a series of T.I.A.’s because, at her choosing, after a certain point in her decline there were no more MRI scans. She found them torture. Not because of the banging but because of the long waits in labs, the need to undress and dress again when she could do neither without help, the lab techs who were always impatient when she couldn’t just hop on the table as quickly as they expected, and on and on.
By then she knew that she would decline treatment and thus saw no need for a definitive diagnosis, just as she would have declined a mammogram. Why get a map to a place you’re not going? So, while many of the health care professionals spoke of these events as T.I.A.s, I don’t know that with certainty. I do know that when she could still use her hands, I can literally pinpoint when something happened by the sudden change in her handwriting in her checkbook, the loss of mobility in a part of her body that had previously worked, the change in her speech from gravelly to incomprehensible to simply gone and a similar progression in her ability to swallow. Your description of accumulating disability is on the mark. But I don’t think naming it properly would have changed anything.
— Gayle, MD
I’m not near death or willing to die myself, but after the time I have spent in a nursing home, I can only bless you for the respect you have shown your mother in allowing her to make this choice.
— rizz
Why in the world do we write about these things? Because some of us have guilt, or we fear not knowing what to do when the time comes? Do not make the mistake I made, where I allowed my mother to call the shots and leave my dad in his bed, in full-blown psychosis, failure to thrive, with malnutrition, calling for her over and over 24/7. I could have done much better- the right thing for him in hospice– without her, my mother. I’m bitter about his suffering and his painful death, but I still care for my mother. She’s 89, in great shape, and I take her to the Gulf Coast in the winter. She hasn’t had a brain in her head since birth, but she is my mother. I failed in not getting her out of the way so I could take proper care of Dad. I did all I could but didn’t want to go to jail for yelling at her so much. It’s difficult to love her, but somehow I do, as much as life itself.
— b y
When will this society support assisted suicide? What do they think V.S.E.D is? Letting people die with dignity… when will this country wake up to the fact that we as individuals own the dignity of our lives. No one else owns our life. We should be able to decide when a terminal illness or old age has wasted us enough. Now I see that we are relegated to starving ourselves and dehydrating our bodies as a way to ‘die with dignity’ when in reality it is just a cover up for what is truly assisted suicide. Perhaps if we named it Assisted End Of Life, or A.E.O.L, maybe that would be more palatable then Assisted SUICIDE. Its all about a name and a misconception and the ignorance of Americans. If we would just accept that death is part of life, then compassionate physicans could make death for those that are in desparate need of it, to be a moment of healing and spirituality with our friends and family. Instead under V.S.E.D. this poor woman’s daughter is left anxiosly waiting for her mother to succumb. Dear God, Please Forgive us for our ignorance.
— R.G., MIII
From Jane: Please see my answer to comment # 7. There is much to be said for the time this process takes. Was I anxious? Of course. But I also think I was more comfortable with my mother’s slow passing than i would have been with a a lethal injection.
— Ryan
As I write this, my mom is in a hospital in Philadelphia in very bad shape. She was admitted with pneumonia 6 weeks ago, but suffered several complications and troublesome strains that left her immune system compromised. She was transferred to a university hospital in Philly last week with the hope that we might see an improvement in her health. Due to sedation, she has not spoken in weeks and recently has become severely less responsive. This weekend, we made the difficult DNR decision and were advised that we should wait another week or so and potentially consider removing her care. At this point, it’s not clear if they are suggesting removal of the ventilator tube (which is only used to hydrate the air through the tracheostoma), or asking for our (her sons, on her behalf) instruction of VSED. Either way, it’s a difficult decision, despite knowing the unlikely chance of her recovery. This article and comments provided comfort in understanding how others have dealt with the decision, and knowing how my mom would prefer to control her own destiny instead of existing in a bed with tubes maintaining her “life.”
— Jason
I expect such deaths will become more and more common, as more and more people live very old with declining health and independence.
— Chris
What the author calls V.S.E.D is a very common way how old and sick people die in many countries that do not have specialized nursing homes. They stop eating slowly, not abruptly. My grandmother ate only a bowl of yogourt a day before she died. My grandfather stop eating all together. Both of them could not get out of their beds unless someone helped. Yes, every once in a while they expressed their opinions that it was the time to die. But, they never really wanted to die, so such expressions were never taken seriously, and sometimes were made fun of by grandchildren. They responded smiling.
Because they were home, there were a lot of happenings around them. The busy family life gave them the reason to want to live. They eagerly awaited the grandchildren to come home after school to talk to them for a while. They found jobs for themselves to be helpful no matter what their conditions were. My grandmother became a living calendar/alarm clock for my busy mom. From her bed she would listen my moms movements and give reminders if she forgot anything, i.e., “did you call your sister?”, “the food on the stove is cooked already, it may be burning”.
— mg
I do not want to offend anyone, but here is my opinion on this subject. As someone who grew up in a non-western country I never truly understood why anyone, unless in a lot of pain, want to die just because they are old and need care. I think it is because of the life style in western countries, it values large personal spaces, and personal spaces put distance between individuals. I can see that, for a busy American mom, an invalid mother-in-law constantly following her movements and reminding her what she may be forgetting would be extremely frustrating.
But my mom never took it negatively, still today she talks about her appreciation of my grandmother for helping her to run the household smoothly while lying on the bed.
When one lives in a crowded household, she/he does not have personal space at all. It certainly feels awful when she/he is a teenager, but at the end of life, I guess, it is a good thing not to be distant from her/his loved ones. One may be invalid, but she/he continues to live closely engaged to the lives of family members.
— gulcan
It is ingrained in so many of us to fight death to the very last that we forget that death will eventually win. There are many ways to die and VSED is one of the better ones. That is especially so if the patient has the advantage of Hospice care and their drugs. They no longer administer drugs by mouth. They can use sublingual drugs and patches. These are drugs that control pain, relieve anxiety and promote sleep.
Do not allow nursing home care workers do impose their belief systems into your decision. For them it is more of a personal emotional conundrum and not a professional opinion. Do employ a Hospice organization. It is far more comprehensive than just nursing care. Hospice will have support services for all family members which do continue after the demise of the subject.
— Dave
This nation does not want to discuss death and dying. If only 40% of the adult population has a will, what does that tell us? People are frightened of death and cannot bring themselves to discuss it with family and loved ones. It is a reality, it will happen. Just have it occur on your own terms when the time comes.
— NurseTerry