With that provocative title, Ezekiel J. Emanuel, at age 57, declared his wish to die at the age I am now. His essay appeared in The Atlantic 5-1/2 years ago, but I just became aware of it.
Emanuel is an oncologist and bioethicist, a vice provost at the University of Pennsylvania, chair of the Department of Medical Ethics and Health Policy, an author and editor in the health care field, and was a key health care advisor to the Obama administration during the development of the Affordable Care Act.
Without question, Emanuel has the right, at any age, to make a decision to stop visiting doctors and tending to any physical maladies that come along. Dying at age 75 (or so) seems right for him based on his current plan:
[A] do-not-resuscitate order and a complete advance directive indicating no ventilators, dialysis, surgery, antibiotics, or any other medication—nothing except palliative care even if I am conscious but not mentally competent—have been written and recorded. In short, no life-sustaining interventions. I will die when whatever comes first takes me. . . . I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability. . . . This means colonoscopies and other cancer-screening tests are out—and before 75 . . . . 65 will be my last colonoscopy. No screening for prostate cancer at any age. . . . After 75, if I develop cancer, I will refuse treatment. Similarly, no cardiac stress test. No pacemaker and certainly no implantable defibrillator. No heart-valve replacement or bypass surgery. If I develop emphysema or some similar disease that involves frequent exacerbations that would, normally, land me in the hospital, I will accept treatment to ameliorate the discomfort caused by the feeling of suffocation, but will refuse to be hauled off. . . . Flu shots are out. . . . no to antibiotics.
He sums up his reasons for not wanting to live beyond 75 this way:
. . . health care hasn’t slowed the aging process so much as it has slowed the dying process. . . . But the fact is that by 75, creativity, originality, and productivity are pretty much gone for the vast, vast majority of us.
Emanuel goes on to talk about the loss of brain plasticity and the increase of dementia in those over 85:
Even if we aren’t demented, our mental functioning deteriorates as we grow older. Age-associated declines in mental-processing speed, working and long-term memory, and problem-solving are well established. Conversely, distractibility increases. We cannot focus and stay with a project as well as we could when we were young. As we move slower with age, we also think slower.
But Emanuel is not prescribing his views for everyone. He believes in choice about how long to live. Surprisingly, though, he opposes medical assistance in dying (MAID) laws. Here, his views differ sharply from mine. He thinks that because most people who use MAID laws do so for reasons other than suffering, no one should have that choice. Research in which he has participated concluded that “the main motivations” for getting a doctor’s assistance in dying “appear to be psychological, fear of losing autonomy and no longer enjoying life’s activities and other forms of mental distress.” He puts his opposition to MAID this way:
I have actively opposed legalizing euthanasia and physician-assisted suicide. People who want to die in one of these ways tend to suffer not from unremitting pain but from depression, hopelessness, and fear of losing their dignity and control. The people they leave behind inevitably feel they have somehow failed. The answer to these symptoms is not ending a life but getting help. I have long argued that we should focus on giving all terminally ill people a good, compassionate death—not euthanasia or assisted suicide for a tiny minority.
Yet these are precisely the reasons Emanuel gives for wanting to refuse medical diagnosis, care, and treatment from age 75 on, and for some conditions from age 65.
One mistake Emanuel makes is to believe that palliative care will suffice for all people and for all conditions. We know that some suffering cannot be ameliorated short of full sedation. Not all people want to live, or die, like this. Indeed, Emanuel himself points to not wanting to be a burden on his children or grandchildren as a justification for dying of whatever ailment may befall him at age 75 or thereafter. He wants his children to enjoy their own older years without the burden of having him around to spoil their lives. He doesn’t want to live with diminished capacity, disabled for all to see and remember. He explains:
How do we want to be remembered by our children and grandchildren? We wish our children to remember us in our prime. Active, vigorous, engaged, animated, astute, enthusiastic, funny, warm, loving. Not stooped and sluggish, forgetful and repetitive, constantly asking “What did she say?” We want to be remembered as independent, not experienced as burdens.
His view of a “good, compassionate death” may not be the same as mine. Why is it any of his concern if I fear losing autonomy, one of the very reasons he gives for wanting to die at age 75? Our only disagreement is in how that death occurs–either passively by refusing medical care or actively with a prescription provided by a clinician (or perhaps by an injection provided by a clinician, as in Canada).
For Emanuel, it is okay to fear losing dignity and control, so long as I choose his method of dying–that is, refusing all medical treatment after age 75. Dying by other means for the same reasons is to him somehow bad public policy.
Yet, Emanuel wants more research on Alzheimer’s, a disease that afflicts mostly people age 75 and older (81% of all Alzheimer’s patients in the US). A skeptic of Emanuel’s views might ask, “If 75 is a good life span, why waste time and resources worrying with finding a cure for Alzheimer’s?”
Emanuel explains the reason for his essay:
What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging.
Here, Emanuel takes a condescending position, arguing that,
I think the rejection of my view is literally natural. After all, evolution has inculcated in us a drive to live as long as possible. We are programmed to struggle to survive. Consequently, most people feel there is something vaguely wrong with saying 75 and no more. We are eternally optimistic Americans who chafe at limits, especially limits imposed on our own lives. We are sure we are exceptional.
I also think my view conjures up spiritual and existential reasons for people to scorn and reject it. Many of us have suppressed, actively or passively, thinking about God, heaven and hell, and whether we return to the worms. We are agnostics or atheists, or just don’t think about whether there is a God and why she should care at all about mere mortals. We also avoid constantly thinking about the purpose of our lives and the mark we will leave. Is making money, chasing the dream, all worth it? Indeed, most of us have found a way to live our lives comfortably without acknowledging, much less answering, these big questions on a regular basis. We have gotten into a productive routine that helps us ignore them. And I don’t purport to have the answers.
Whether I am programmed or not, eternally optimistic or not, and want to struggle to live past 75, I have my own personal reasons for wanting a few more years. I would like to see my 16-year old granddaughter grow into a woman. I would like to continue to enjoy the partnership that my spouse and I have had for fifty-one years. I would like to see this country become as great as it has the potential to be. I would like to play a few more hands of 42. And . . . .
As far as the existential questions Emanuel raises, I confronted them long ago, and my life has never been about “making money” or “chasing the dream,” and certainly not at my age. My life and the lives of most of my friends have never been about avoiding life’s problems. I can accept my limitations and adjust to new ones until I decide that the quality of my life is no longer acceptable to me. But I will never try to convince others that such questions lie with anyone but themselves.
Lamar, I found your discussion above very enlightening. Dying is a very difficult choice since the game is over then. I believe Christ will call me Home at that time and I anxiously await His call. I also believe the German T4 Euthanasia Program had some good features. All, who were suffering for any reason, were dispatched mercifully by the State. The victims were not consulted. It was mandatory. It only lasted two years from 1939 to 1941 and the was stopped after the intervention of the Roman Catholic Church. Today only Belgium allows one to get medical assistance to die for any reason at all. Netherlands, Germany, Canada and Switzerland also have more limited euthanasia laws. Japan used to allow socially accepted Seppoku before WW II. Eleven American states have limited euthanasia laws.
I am age 85 and did try to Exit after being terribly maimed by two doctors in my feet. Pain was intolerable at the beginning. I tried all the following to try and get an Exit: Final Exit Network, Compassion and Choices, LifeCircle in Switzerland and Pegasos in Switzerland. It did not work out with any of them. However, after 5.5 years with this problem I have learned to live with the problem. I am allergic to all pain medications but I try to walk over one mile per day, use Turmeric food supplement and now warm water foot baths the last few days.
Now I will try to write a book describing my suffering. Doctor abuse is terrible in America causing the death of 250,000 per year to be the third leading cause of death here:
https://hub.jhu.edu/2016/05/03/medical-errors-third-leading-cause-of-death/
Plus, suspicious deaths among the elderly are rarely investigated. I believe most of the coronavirus deaths in nursing homes and hospitals are really medical homicides covered up by falsified death certificates:
https://www.propublica.org/article/gone-without-a-case-suspicious-elder-deaths-rarely-investigated
Pain and suffering are accepted after a long time since there is no other choice. Some good advice is to change what we can and ACCEPT what we can’t.
After my unfortunate suffering at the hands of two doctors I can only remember that Franklin Roosevelt was totally paralyzed by polio in both legs with great pain and still went on to serve as US President for 13 years. Theodore Roosevelt was also badly injured in a collision between his carriage and a trolley car badly damaging his left leg in 1902 yet he also served seven years as US President.
If both of those US Presidents could exist and govern our nation for a long time with terrible physical suffering, we ordinary folks can do the same.
I sense a “doctor knows best” tone is his writing style. The notion that somehow it is best to prevent some people from having freedom of choice at the end of their lives isn’t medical advice but personal value judgement on his part. Whether that comes from religious, political or medical authorities, I believe that the individual’s right to choose is paramount. That includes making up my own mind and changing it, for any reason, at age 75 or more.
I hope Ezekiel Emanuel was not teaching logic at my old alma mater, the U of Pennsylvania. I share his emotions about the prospect of a looong decline and, just as he does, i choose not to have much of the routine tests and procedures designed to “ look for trouble” when there is no way to really “ fix” the trouble thus discovered. However, we part company when he blandly assumes that simply refusing most tests, surgery etc starting at an arbitrary age will lead him to have a peaceful, pain free death BEFORE he is crippled mentally or physically by disease or age. I can only recall my French grand parents and grand aunts who never had surgery or an invasive test in their lives but still managed to live well into their late 80’s and early 90’s. Two had to be placed in a nursing home in the last 5 years of their lives because, although they did not have Alzeimers..they had become a danger to others ( my grandmother set fire to her apartment in Paris accidentally twice in one year). She was also unfortunate enough to eventually suffer great pain for months and months before her death….in spite of the best efforts of palliative care. So, Mr Emanuel’s plan to obtain an easy, painless death before too much degeneration has occurred SIMPLY by foregoing most or all medical treatment is wishful thinking. And how he can then support forbidding competent persons from accessing the type of death he wants for himself through medical/pharmaceutical aid in dying, is such an illogical and convoluted reasoning, it takes my breath away. Mr Emmanuel…handle your own demise in the way that seem best for you but PLEASE allow me to access the type of pain relief I want, in the amount I desire and the means to abridge my suffering and/or what I may decide is unbearable circumstances. Let it be the patient’s decision…my decision…because, after all, I, ME, MYSELF will be the one enduring the pain, lack of dignity etc, etc..so let it be MY call for once…not my therapist, my pastor… even my family and CERTAINLY NOT public opinion or politicians.
I share your feelings on this.
It’s all well and good to say he won’t accept anything but palliative care, and I actually am pretty much in his ballpark, having refused preventive and allopathic measures for quite a while now, at 70. Allopathic measures have proven to do me more harm than good, over and over, and I also would like to just leave when whatever it is comes along to take me. However….I wonder if he understands that palliative care does not always work, and it’s not like he is guaranteed to be sitting pretty with no pain because of his palliative care, and whether he may change his mind about wanting a peaceful and self-controlled exit. He may find himself medically a prisoner in some hospice or nursing home, unable to fight back having lost control of his life. (I definitely want the choice of a peaceful and self-controlled exit; and I don’t care much whether I have left a legacy or a mark or whatever, never understood the drive to do so.) So I engage in whatever alternative approaches appear to help, have discovered a type of energy medicine that is powerful and may get a second chance at being physically competent. But if that fails, and I continue the downward slide, all I want is the means available to exit on my own terms.
Exactly.
I do not believe that the medical establishment will provide adequate or perhaps any pain relief to someone who has refused their options for treatment. Once you are in the system (in a hospital or other facility), the routine procedures will be done or you will be discharged.
I was doing pre-op for a simple cataract operation a few years ago, and requested a “do not resuscitate ” order placed on my chart. The process ground to a halt, delaying the the surgeon, the pre-op staff and the other people waiting for their operations. It was made clear that the hospital had no intention of allowing me to stay and risk adding a mortality to their statistics. I decided to go ahead with the surgery, since it had so little chance of a bad outcome.
What amazes me most is that the general populace simply accepts this, that if they want anything at all from the allopathic community, they have to agree to being a medical prisoner. This BTW and unfortunately includes FEN, of which I am a long term member. I’ll never be able to use their exit service despite supporting them, because they require a diagnosis from a licensed MD, and I am simply not going to go through the invasive, likely painful, and possibly harmful testing that would require. Food for thought.
You are absolutely right, Janet. Unless you agree to whatever is considered the approved, normal course of treatment, you may very well be arm twisted into it OR find yourself kicked out of the facility ( be it rehab, hospital etc) AND your physician may very well drop you from his/her practice. In fact, that is VERY LIKELY to happen to those who require strong pain medicine. It happened to a terminal cancer patient friend of mine who refused surgery and was told his prescriber would no longer see him or prescribe pain killer until he agreed to see a mental health therapist. She described my friend as anxious. argumentative and a “ refractory patient” in her notes. Perhaps because Mr Emanuel is an MD himself, he naturally expects that he will be treated in a respectful manner as a rational, intelligent adult….Once he becomes ill, frail and emotionally overwrought, he may find he will get treated like the rest of us…and any wishes that run contrary to the “ norm” will be ignored
Ms. Van Sickle,
I may be wrong about this, but isn’t a DNR order something that a doctor or other qualified health care professional must usually initiate for a patient who has a good reason for one – being in generally poor health and/or having at least moderate Alzheimer’s disease or another form of dementia? It’s not generally something that someone can request just because…It’s also something that should never be initiated by someone in a health care setting who does not have an ongoing relationship with a patient. A friend of mine was under pressure to sign one while hospitalized for atrial fibrillation. She called an MD friiend who told her “no way”. You will recover from this and you need to discuss this with your personal physician, who will probably tell you have no need for a DNR at this time. Three years later, she still does not have a DNR.
The implication (in Dr. Emmanuel’s view) is that existential, mental, and emotional suffering does not justify wanting relief; that physical suffering can be alleviated by palliative care and therefor palliative care obviates the need for aid in dying. This argument is fallacious: Not all pain can be alleviated by palliative care, and most extreme pain is treated with opiates or other drugs that have undesirable side effects and which-affect cognitive and physical functioning. Some of us prefer quality of life at any stage, and do not think suffering is noble or redemptive.
I think that we can better understand Dr. Emmanuel’s position if we look at it from an orthodox religious perspective: only God can decide when death shall occur. For those of us not constrained by religious beliefs we are thankful that Final Exit Network exists.
Too bad FEN is constrained by our fascist medical system.
I wrote about this Ezekiel J. Emanuel article in a blogpost “there’s still no cure for dying” (12/10/14); it was reposted by FEN on its blog on December 17, 2017. I thought Emanuel’s article was provocative for such a well-known person, and as discussed in my blogpost, I agreed with most of it. I recently emailed him to ask if he still agrees with his positions as presented in 2014; he responded that he did: “I remain committed to my ideas. No change in perspective.” (8/6/19) Given our current collective situation, it seems to me that there is value to these ideas about making choices to not prolong life in old age, even if one doesn’t agree with every single aspect.
DECIDING WHEN MEANINGFUL LIFE IS OVER.
Some thinkers suggest setting age-limits
for aggressive and elaborate medical treatments.
Instead of a specific age (say 75, 80, 85),
we might consider this alternative:
WHEN MEANINGFUL LIFE IS OVER.
Such an analysis would begin with an account
of the most meaningful elements of that person’s life.
If the most valuable parts are now in the past,
it might be time to consider “winding down”.
Would it be helpful to ask explicitly:
Where have we found the deepest meanings in life?
Which of these meanings are still possible?
Which goals are now beyond our grasp?
Acknowledging that some meanings
are no longer possible
might suggest beginning to refuse
the most elaborate (and expensive)
medical treatments that might be proposed
even if such refusal will probably result
in a somewhat earlier death.
For many patients such loss of meaning
will be caused by Alzheimer’s disease
or other forms of mental decline.
Here is a whole chapter exploring
life-ending decisions for Alzheimer’s patients.
There are 15 recommended safeguard-procedures
for helping to decide EXACTLY WHEN
to to make the choices that will lead to death:
https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-MD-ALZ.html
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
related reading:
Here is another chapter asking about fulfilled meanings:
Completed Life or Premature Death?
https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-CLPD.html
ESTABLISHING THE REASONS
FOR CHOOSING DEATH.
https://www.facebook.com/groups/1534291900145198/permalink/2369767713264275/
WHEN MEANINGFUL LIFE IS OVER:
TERMINAL ILLNESS
IS NOT THE ONLY REASON FOR CHOOSING DEATH.
https://www.facebook.com/groups/1534291900145198/permalink/2194514044122977/
THE VERY BEST DAY TO DIE.
https://www.facebook.com/groups/1534291900145198/permalink/2054567784784271/
END-OF-LIFE MEDICAL DECISIONS.
https://www.facebook.com/groups/1534291900145198/permalink/2136470759927306/
WHEN A FAMILY MEMBER
IS SOMEWHERE IN THE LONG DECLINE
DUE TO ALZHEIMER’S DISEASE:
CHOOSING THE BEST DAY TO DIE.
https://www.facebook.com/groups/1534291900145198/permalink/2456913161216396/
DECIDING DEATH
FOR PATIENTS WITH ALZHEIMER’S.
https://www.facebook.com/groups/1534291900145198/permalink/2464577917116587/
_________________________________________
Chapter G (23) Choosing Death—revised 4-9-2020