It’s COMPLICATED–Attitudes about Dying
Posted: January 23, 2021 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges, Topics of Current Interest | Tags: Barbara Karnes, death and dying, Ezekiel Emanuel, grief, quality vs. quantity of life, Rinka Family, The Caregiver Space, Ventilator | Leave a commentI will admit to the fact that I have pretty strong feelings about life and death issues.
- I hold to the belief that quality of life supersedes quantity of life.
- Although I understand the practical reasons that nursing home residents and older people in general are the top priority for COVID vaccinations, I struggle with the concept that young people—with most of their life ahead of them—must wait for someone like me—with most of my life behind me—to get vaccinated.
- When the hospice spiritual advisor asked my mother-in-law if she had ever considered stopping treatment, she said no, that her goal was to live to one hundred and that she didn’t want to miss anything. To be honest, the thought that ran through my mind was, “Is there no end in sight?”
- I thought my daughter-in-law’s mother exhibited profound courage and strength when she decided not to treat her stage four cancer after an unexpected diagnosis.
- I support the perspective expressed by Ezekiel Emanuel in his article “Why I Hope to Die ant 75,” which appeared in the September 2009 edition of The Atlantic. (Emanuel was recently named to President Biden’s COVID-19 Advisory Board.)
http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/
“It is Emanuel’s contention that―whereas death may deprive us of experiences and milestones; of time spent with our spouse, children, and grandchildren; indeed, of all the things we value—living too long is also a loss. It renders us disabled, or at least faltering and declining. It robs us of our creativity and ability to contribute to society and the world.
Even if we manage not to become burdens to our children, our shadowing them until their old age is also a shortfall. It transforms how people experience us, relate to us, and remember us—no longer as vibrant and engaged—but feeble, ineffectual, and pitiable. It is indeed such memories that are the ultimate tragedy.
Americans might live longer than their parents, but they are likely to be more incapacitated, both physically and mentally. Although we are growing older, our older years are not of high quality. Health care has not slowed the aging process so much as it has slowed the dying process.
So, yes, I am in agreement with Emanuel. I want to die with respect and without aggressive care—no ventilators, feeding tubes, dialysis, surgery, antibiotics, or any other medication—other than palliative care; in other words: no life-sustaining interventions. A do-not-resuscitate order and a complete advance directive have been written and recorded (even if I am conscious but not mentally competent). I do not want my “consumption” to outweigh my ‘contribution.’”
What to Do about Mama? pp. 300-301
I also admit, ITS’ COMPLICATED.
This becomes abundantly clear in The Caregiver Space article, “The Ventilator: Life, Death and the Choices We Make at the End”, November 19, 2020, and its accompanying Hidden Brain Podcast.
The Ventilator: Life, Death And The Choices We Make At The End | The Caregiver Space
In the Podcast John Rinka tells his wife’s story. Stephanie was a nurse with a strong opinion about quality and quantity of life (much like mine). Together they had ongoing conversations about end-of-life issues, and Stephanie was always unequivocal—she wouldn’t want to be kept alive if her quality of life was gone. But then Stephania became a victim of ALS and the Rinka family discovered that choices prefered when we’re healthy may no longer make sense to us when confronting death.
As John Rinka shares:
- Seemly rational choices you make when you are happy can change when you are facing death.
- “I can’t live that way” becomes “I want to see tomorrow.”
- When there is no more hope, every day just gets worse.
- She could have lived peacefully with dignity but brought misery upon herself and her family.
- We were overwhelmed with daily challenges and the progressive decline.
- The feeding tube was a big decision but when Stephanie chose the ventilator I was floored; this was not the way she ever wanted to live.
Their son Jason shares with us as well:
- It was like having two moms. One, the rational mom and experienced nurse; the other, the mom who wanted to live until tomorrow.
- The mistake is in thinking you know the choices you would make in the moment.
- She wasn’t thinking rationally–but only, “I’ll have tomorrow.”
- I don’t want to go through that—I don’t want to be a burden to my family. But the reality becomes: “Are you ready to leave this?”
Most poignantly, John sums is up by saying: “I would relive any of those days before the ventilator, but there’s not one day you could pay me enough money to relive after the ventilator.
We all have more than one version of ourselves, each with different desires.
Fear, confusion, and love make easy decisions difficult.
Another interesting perspective is expressed in the January 21, 2021, Barbara Karnes article: The Scar In Your Heart: Grief In End of Life Care
The Scar In Your Heart: Grief In End of Life Care – BK Books
Karnes received a comment from a hospice nurse who said: “The JOY of hospice was mine for years. I could easily see the beauty in almost any end-of-life situation. Then, my dad died on our service in 2015. I continued to work for hospice for the next three years but after my dad died I couldn’t see ANY beauty in end of life. I completely walked away in 2018. I don’t know how to “get it back.”
Barbara Karnes responded that when someone in a professional role is facing a loved one’s end of life, they are confronted with entirely different perspective. The dying is personal and therefore has a different impact. Entering a patient’s home after the death of a loved one touches and rubs the professional’s grief wound.
Caring for people at end of life has its own unique challenges. Hospice, Palliative Care and Home Health agencies need to deeply support their staff or they will suffer from compassion fatigue.
Would you choose to die at 75?
Posted: October 5, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: Alzheimer's disease, aneurism, Barbara Mancini, brain surgery, consumption, contributions, creative potential, creativity, death and dying, decline, difficult-decision, disintegrate, euthanasia, Ezekiel Emanuel, life-sustaining interventions, memories, mental disability, palliative care, physical disability, physician-assisted suicide, productivity, TBI, the American immortal, tragedy | 1 CommentThere’s a TV in the weight room at the gym where I go to attempt to stave off old age. Sometimes I catch the Steve Harvey Show, and have, on a couple of occasions, seen two cute and charming little old ladies who have been best friends for nearly 100 years. At those times I have commented to whomever is around, “I don’t want to live to be 100, but when I see these two ladies I reserve the right to change my mind.”
In The Atlantic article “Why I Hope to Die at 75,” Ezekiel Emanuel (Director of the Clinical Bioethics Department at the U.S. National Institutes of Health, Department Head of Medical Ethics & Health Policy at the University of Pennsylvania, and former advisor on health policy for the Obama Administration) makes a similar remark: “Seventy-five years is all I want to live. I retain the right to change my mind and offer a vigorous and reasoned defense of living as long as possible.”
Emanuel might also say that I am “making a valiant effort to cheat death and prolong life as long as possible”—that I am one of the cultural types he labels, “the American immortal.” But actually, he would be wrong. What I am actually trying to accomplish is maintaining the best physical abilities and quality of life that I can for whatever years remain in my life.
For you see, although I find Emanuel’s chosen age of 75 to be somewhat arbitrary (which he acknowledges) I do, overall, agree with what he has to say. What follows in a synopsis of some of his remarks, which I will illustrate with my own life experiences, as well as previous blog posts. Unfortunately, the older I get the more death-related life experiences I have to relate.
To see the full article, click on:
http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/
Why I Hope to Die at 75: An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly.
Ezekiel J. Emanuel is 57 years old, and has the year 2032 as his target date to “check out” because—“Seventy-five. That’s how long I want to live: 75 years.” Now I’ve got to tell you, Ezekiel, that age is making me a little squeamish because it gives me just 9 more years. I don’t think I will have done or seen all that I want to in that amount of time. But it does give me some leverage to say to my husband, “Look Don. We really need to get on the stick and start seeing the world!” (He’s always putting his retirement and our travel off for later.)
But, Emanuel is sure of his position, despite his assertion that : death is a loss; it deprives us of experiences and milestones, of time spent with our spouse and children; and, in short, of all the things we value. But he also sees as simple truths:
- Living too long is also a loss.
- It renders many of us either disabled, or at least faltering and declining.
- It robs us of our creativity and ability to contribute to work, society, and the world.
- It transforms how people experience us, relate to us, and remember us (as no longer vibrant and engaged but feeble, ineffectual, and even pathetic).
My husband and I were his mother’s caregivers for seven years, four of them in our home. This is, indeed, the process of decline we observed on a daily basis. She used to say, “I want to live to 100. I don’t want to miss anything.” One of the thought that crossed my mind at those times was that I do not want my grandchildren to remember me that way.
Emanuel states that by the time he reaches 75, he will have lived a complete life having: loved and been loved; seen his children grown and succeeding; seen the grandchildren launched; pursued life’s projects and made contributions. If he dies after these accomplishments and before he has too many mental or physical limitations, his death will not be a tragedy.
In 1994, my father-in-law passed away suddenly in his sleep one night. He had even played tennis the previous morning. Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at 8:00 in the morning, but shocked when she nudged him and he did not respond. Yes, it was a shock, but he died in a way that many of us would “like to go.” Although there was a profound sense of loss, his death was not a tragedy.
On the other hand, my father died in 1963 at the age of 48 after four years of a “secret” illness. He left a young wife and two teenage children behind. He was forever deprived of the ability to say goodbye to life and those he loved. To me, this was a tragedy.
For further information about my life-altering experience, see:
Different Perspectives on Grief
Missing Childhood: The Overlooked Caregivers
People cope with death in many different ways – The Patriot-News
It is important to note, however, that Emanuel is clear:
- He actively opposes legalizing euthanasia and physician-assisted suicide.
- He believes that the focus should be on giving all terminally ill people a good, compassionate death.
- He will limit the amount of health care he will consent to after 75.
I followed with interest (and posted in this blog) the case of Barbara Mancini. I believe it fits well with Emanuel’s discussion about terminal illness. Mancini is a Pennsylvania nurse who was accused of helping her 93-year-old father commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die. Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.
See: A Controversial Issue Worthy of Comments
Emanuel states that although Americans may live longer than their parents, they are likely to be more incapacitated, both physically and mentally. In other words, we are growing older, but our older years are not of high quality. Over the past 50 years, health care hasn’t slowed the aging process so much as it has slowed the dying process.
I have a dear friend who was diagnosed with a brain aneurism when she was 64. Because she feared having a stroke, she elected to have brain surgery. She suffered a traumatic brain injury during surgery resulting in a stroke, additional surgery to relieve the pressure on her brain, 6 weeks in a coma, and the inability to use 3 of her 4 limbs. A once vital, vivacious woman, she now lives in a nursing home, a shell of her former self.
But even if half of people 80 and older live with functional limitations, and a third of people 85 and older with Alzheimer’s disease, that still leaves many elderly folks who have escaped physical and mental disability—who are functioning quite well. Emanuel contends, however, that even if we aren’t demented, our mental functioning deteriorates as we grow older. As we move slower with age, we also think slower, and lose our creativity—backing this concept up with the following chart:
Emanuel recognizes that there is more to life than being totally physically fit, productive, and creative, and that many people want to use their life experiences to mentor successive generations. But, he argues that when parents live to 75, children have had the joys of a rich relationship with their parents, but still have enough time for their own lives, out of their parents’ shadows. He feels that living too long places significant burden upon our progeny, stating, “Of course, our children won’t admit it. They love us and fear the loss that will be created by our death. And a loss it will be. A huge loss. They don’t want to confront our mortality, and they certainly don’t want to wish for our death. But even if we manage not to become burdens to them, our shadowing them until their old age is also a loss. And leaving them—and our grandchildren—with memories framed not by our vivacity but by our frailty is the ultimate tragedy.”
My daughter-in-law’s mother passed away last summer 5 months after a sudden diagnosis of colon cancer that had spread to her liver. She opted not to undergo treatment, which might have extended her life, but not have allowed her to live as she wanted. Because she was only 68, her decision was very difficult for her husband and children to accept. I truly admired her for the strength of her convictions and the courage of her choice in making what must have been an incredibly difficult decision.
See: My Counterpart: a Go-To Grammy
So, since Ezekiel Emanuel does not believe in assisted suicide, what does he say he will do, once he has lived to 75?
- “My approach to my health care will completely change. I won’t actively end my life. But I won’t try to prolong it, either. 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.”
- “Obviously, 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.”
Emanuel supports the following health care policies:
- He is against using life expectancy as a measure of the quality of health care (i.e. longer life does not translate to better care). He supports biomedical research and the need for more research on Alzheimer’s, the growing disabilities of old age, and chronic conditions—not on prolonging the dying process.
- I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. 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. Are we to embrace the “American immortal” or my “75 and no more” view?
In summary, Ezekiel Emanuel states: “But 75 defines a clear point in time: for me, 2032. It removes the fuzziness of trying to live as long as possible. Its specificity forces us to think about the end of our lives and engage with the deepest existential questions and ponder what we want to leave our children and grandchildren, our community, our fellow Americans, the world. The deadline also forces each of us to ask whether our consumption is worth our contribution.”
You may want to revisit some of my other older posts about this difficult topic: