I saw an article recently in which the author writes that doctors die differently from the rest of us. That certainly caught my attention, and while there are no studies to back up what he writes, he does seem to point to factors that all of us might want to consider.
Ken Murray, MD, in How Doctor’s Die, writes:
“It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.”
He continues,” Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen…”
What made the article particularly relevant for me was the experience I had just gone through with my 93 ½ year old dad, who died July 4, 2011.
Brief background:
My dad (Sam) had been very clear with our family he did not want any medical extension of his life. He was clear he had lived a good and long life and was not afraid to die. He repeatedly told us “there is a time to leave the party,” and in the last year or two, he said we needed to accept that the time had come for him.
“Of course,” we responded. “We won’t do anything extraordinary to extend your life.”
Ah, and that’s where the issue got a bit sticky.
His health had been basically good. He had no heart issues, no cancer, no strokes, and, except for somewhat weak kidneys and an enlarged prostate, he had avoided the major life ‘killers.’
Sam had fallen three or four years earlier, and although his leg had been ‘nailed’ back together, he became increasingly less mobile, moving from a cane to a scooter to a walker, and ultimately to a wheel chair over a period of three years. Gradually, he also became less able to enjoy those things that previously brought him great pleasure (reading, chess, computer, and music).
We caught urine infections, dehydration, and other ‘minor’ issues early, and he saw his internist once a month, and his other doctors as necessary. The result of this care was that we were extending his life, even though he was quite ready and accepting of dying.
Then, one day in June 2011, he became quite confused, and we suspected a urinary infection. So off to the ER we went, where the doctor said he did have an infection and was dehydrated. He also suggested we hospitalize Sam to stabilize him as he feared there were other indications of problems.
Sam objected, and we agreed to leave the ER with the understanding we’d return if the antibiotics did not cure the infection.
We got a call a few days later that the infection had spread to his blood, and the recommendation was we take further action.
We called his internist about what to do and had a truly amazing discussion. His doctor said that we were at a decision point. We could hospitalize Sam and, most likely, successfully deal with the current medical issues. Or, we could keep him where he was, make him as comfortable as possible (Hospice was involved at this point), and treat this as the ‘concluding event’ in Sam’s life.
His internist said he knew Sam well, knew he wasn’t saying he wanted to die because of depression, delirium, etc., and knew Sam’s desire to ‘leave the party’ was a conscious, well thought out, and often expressed decision, desire.
His doctor said he’d support either decision we made.
Hospice said Sam was in critical condition. His 24/7 caregiver encouraged us to discuss the situation with Sam and to listen to what he was saying. Our family was in agreement Sam should make the decision whether to return to the hospital or simply be made comfortable until his body shut down.
When we talked with Sam, he was quite clear. “I’m ready,” he said. “It’s OK. Let me go.”
So we did. Three days later he took his last breath with family at his bedside and with a minimum of pain. With the help of his internist, we had finally understood that there had to be a ‘concluding event.’ We were fortunate enough everyone was in agreement, and we could follow Sam’s desires.
So why this post?
Because, in addition to directing you to Dr. Murray’s article, I wanted to share with folks what I discovered. Plus, I hope some of you will share with MillersTime readers your discoveries from your experiences with end of life issues. Obviously, no two situations are the same, and what follows is not meant to be advice for anyone.
For me, for us:
* How wonderful it was that we knew so clearly what Sam’s desires were.
* I discovered good, routine care often extends life, even when one is not meaning to extend that life.
* Our ability to have a 24/7 caregiver was immensely helpful to Sam and to all of us who were also taking care of him.
* How important it was for us to have family agreement about how we would handle the end of life events.
* How important it was to have a doctor who knew Sam, understood him, and was able to help us focus on Sam’s desires (as opposed to just keep Sam alive, with one more hospitalization).
* The concept of a ‘concluding event’ was important, once it was mentioned to us. We all hoped for (fantasized about) a smooth, painless passing in the middle of the night, which probably doesn’t happen very often.
* Hospice was particularly helpful, both in how we dealt with Sam’s end of life and also my mother’s end of life, three years earlier.
* That there is, as Sam so often said, “a time to leave the party,” and it is often difficult to know exactly when that time is and exactly what role family should play in that decision.
* For us, it was not possible to avoid playing a role in the ‘time to leave the party’ for Sam.
* Sometimes we mixed up our needs with Sam’s. But ultimately, it was Sam’s wishes that needed to be honored.
* Sam and Esty gave us a gift by having their wishes and all of their estate issues handled in advance.
Leslie Lieman said:
Thanks for sharing this Richard. I have always been moved by the stories about you and your dad. Clearly Sam was a class act and with the support, understanding and love of the entire family, he was able to take his last curtain call with dignity and choice intact. I can only hope to have the grace to offer the same to others and that others will allow me to follow in Sam’s footsteps when the time comes.
Cory said:
Amazing and insightful. I’m glad you posted it. The clarity and balance in which you write about this event is amazing to me and I know it must have been excruciating at times for you. Up the Rebels as Sam would say. I miss them both.
Diana Bunday said:
Your stories of Sam and his sayings were always so entertaining and human.
Sam was a class act as has been said. He was a warm and interesting presence
when we had lunch together a few times.
Certainly, as I get older and I had my 77th birthday in December, I think about death, mine, and other friends and family, a lot.
I have not quite figured it all out–that is where we came from and where do we go, but like everyone I want to go with no pain and with love and dignity.
Thank you for your thoughts on the subject,
Diana
Anonymous said:
We did what you did. My father, already an amputee from circulatory disease, was diagnosed at age 75 with inoperable lung cancer (more than 15 years after he quit smoking). His GP met with my mother and said the best thing we could do for him was not tell him, keep him comfortable, and let him go; they met with me, and I agreed. The man was sick of being sick; there had been years of “procedures” before the amputation. He was exhausted. And he couldn’t see properly because people with high blood pressure and circulatory disease are not good candidates for lens replacement cataract surgery.
Six months after the diagnosis, after a brief hospitalization “for tests,” he came home from the hospital, went to sleep in his own bed, and died.
Families have to discuss this with each other, as yours did, and then with doctors. The melodrama must be taken out of the topic, because, as you note in your title, end of life is universal and absolute. There is no reason why it has to be fraught with emotional excess. Emotional excess should be reserved for those who die because someone texted while driving or didn’t de-ice the plane or drove the cruise ship onto a rock. In the real world, death is as natural as birth and a lived life is the bonus.
Todd Endo said:
Thank you very much, Rick, for writing this piece. I have had so many
thoughts and emotions as I read, reread, and reflected on what you
wrote.
First, you have caused me to act. Paula and I have wills from decades
ago when we had few assets to think about. We have thought to update
our wills, but you caused us to act. We are exploring a trust,
instead of a will. We are drafting more explicit instructions than
“do not resuscitate.” We are planning more explicit and detailed
meetings with our children. Our age group and our children’s both
tend to NOT push these discussions. Your example inspires me!
Second, we never had “a concluding event” with any of our four
parents. I miss that. We had lots of great discussions and
relationships, but not a concluding event. The last parent to die, my
father at 92, just keeled over one day, while still pretty vigorous
and active. the other three lingered. One, Paula’s mother, was in a
coma for a year and a half and could have been on the news as a type
of Terry Schiavo court case, or the woman in Missouri, whose case was
active at the time of Paula’s mother’s death. I happened to find her
living will taped to her dresser in her empty house and this broke the
logjam. but, we didn’t have it all in one place.
Third, I realized how we just took automatic actions, rather than
implementing agreed upon decisions. My mother was declining because
of advances in her Parkinson’s disease and was in a nursing home,
unable to act autonomously. She caught pneumonia and the doctor
informed us. I don’t remember the conversation, but my sister and I
automatically transferred her to the hospital and she quickly
recovered with antibiotics. When we talked with my other sister in
Chicago, she said “why did you transfer her to the hospital? Pneumonia
is the ‘old person’s friend.'” We said that we just didn’t think of
that option. A few months later, my mother again got pneumonia and
again, we automatically transferred her to the hospital, with the same
resulting conversation. Avoidance? My mother continued to decline,
unable now to recognize us most of the time, and a few months later,
she again caught pneumonia and again we transferred her to the
hospital. Strange that we just went to automatic drive. She died
this time despite the antibiotic treatments. I think that detailed
discussions and a carefully written plan would have helped us
immensely.
Fourth, I recall a recent conversation with a college classmate about
his mother’s death. We had had lunch with his 90 year old mother the
previous summer. He told me that his mother had decided to take
herself off of her medications, knowing that this would hasten her
death. It was jarring to think about. But, we had a great
conversation about the process and my classmate’s acceptance of and
peace with his mother’s decision.
Fifth, I recall a colleague who told us that she and her husband had
an “open upon our death” envelope with a complete set of instructions
for their children. As I recall, the contents were not news to the
children because they were the result of a series of detailed
conversations. But, they were all in one place. Going back to #1, we
have started that package.
So, thanks again, Rick for generating in me thoughts, emotions, and actions!
Rev. Norman Rates said:
At 88 that article was very helpful. I always say that I am closer to dying than being born; therefore, such a reality lets me know that dying is inevitable.
Your father’s wishes are the same as mine, and I am glad that he expressed them so succinctly and that you all respected them, although I am sure hard to do so based on your personal feelings.
Thanks for this interesting information.
Richard said:
Feb. 19 – Washington Post article today by Dr. Craig Bowron, hospital-based internist, weighs in on these end of life issues: http://wapo.st/xS99xr
Judy White said:
Thank you so much for this, Rick. It’s a great example of “doing it right,” and we are so glad you wrote it up. We are thinking about what is the next step for us in dealing with a topic we’d rather avoid.
janet brownsister said:
The whole subject is so difficult for me. I can not yet articulate my feelings.
I appreciate that you did and am grateful beyond measure that you are my brother. I know all that you did to honor and respect mom’s and dad’s lifelong instructions.
Your next task will be to teach me how you approached and handled it all with such class and dignity. You know I had a fantasy that they were immortal
Remember I said I didn’t want to live in a world without mom?
You said you would have a basket case on your hands when that happened.
I’m mailing you the basket.
tiffany said:
Richard, this is incredible. I am not sure how I missed this post, but thank you for sharing. Sam was clearly so many things, but his thoughtfulness was impeccable. The other comments are spot on, thank you for taking the time to articulate something so meaningful. I love the perspective Sam was coming from, and it was also so compassionate of you guys to honor his wishes.