How We Die in America
In undergrad we had a course titled "life and dying". I'll never forget the first words my instructer said as he entered the room: "I don't know why they call it life and dying when the course is really all about dying".
What a great course too. It was there that I visited my first hospice, learned about the choices that people in our culture commonly make when it comes to their own (impending) death and the realities that those who never think about this have to face.
Residency was a course in itself. I don't think a day went by where I didn't have to do something to a patient that I knew I would never want done to me had I been in their situation. The truth is that unless a patient specifically states his/her wishes in advance we are left with little choice but to do everything in our power. Sometimes, that translates into procedures, painful ones, dangerous ones as well.
The Schiavo case brought the issue to the public's attention and really was a prime example of how the beliefs of family members and the lack of public knowledge of one's wishes can cause tremendous chaous.
A reader requested that I post a link to this article. The article has some interesting revelations about the contrast between how we "think" we're going to die and how we're actually likely to checkout. It's from the new book, "UNPLUGGED: Reclaiming our Right to Die in America."
Here's a little exerpt:
Our doctors are equally subject to technology's allure. They learn in medical school to assess, treat, and cure. They then move into a hospital culture where a death, even among the aged, is seen as a failing. The young Dr. Lown in 1959 plied the silver paddles on the chest of a living human for the first time, and saw a miracle; a racing, out- of-control heart instantly returned to a normal heartbeat. The young Dr. Potter in 1963 compressed a chest and saved a hardware store owner, and the whole town knew it. Their tools were unbelievably primitive compared to the arsenal available to a young doctor today, but the miracles are equally wonderful. How could we deny today's doctor such joy? Or today's patient? Why in the world would we want to?
In truth, we don't want to, and we shouldn't want to. We want the technology, and we want the cure. When surveyed, the majority of us say that when our dying comes, we hope to be at home, free from pain, surrounded by loved ones, and not hooked up to machines. In the abstract, that's likely true. We also very much want to be hooked up to those machines right up to the very moment when the doctor is sure that those miraculous tools can't fix us. Trying to find that exact line is no easy business.
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I have read about 6 postings on your blog. All of them are an interesting read.
I am a hospice nurse. I was called in the other day to provide hospice care for a patient in the ICU. His MD was a very well known, talented and brilliant surgeon, who for some reason wanted my advice on how to keep his patient comfortable. THe patient was moaning and crying out, had a left ventricular assist device, a wound vac, a dobhoff tube with the feeding going full force, 3 IV antibiotics, a Foley , a rectal tube, and numerous open wounds. I suggested we stop the
ABX, schedule the Xanax, cut down the feeding, and provide morphine for pain relief and comfort. His reply was, "He's not in pain! WHy should he be in pain??!!! I was shocked and amazed. Doc, can you explain this to me?
Hi, I am a hopice nurse, so I see a lot of stuff. The other day I was called in by a very great cardiac surgeon to recommend comfort measures for his patient who was dying of CHF in the ICU. The patient was moaning and crying out, had a left ventricular assist device, a dobhoff with feeding going full blast, a wound vac to the sternal wound, a rectal tube, a Foley, and numerous open wounds being dressed by the nurses, 3 IV antibiotics, and was poorly responsive. I suggested stopping the IV ABX, cutting down the feeding, scheduling the Xanax (the pt. was getting 0.25 mg Q6h PRN, and providing morphine for comfort and pain control. The surgeon said, "He's not in pain! Why should he be in pain? He has no reason to be in pain!" It was as if the man could not see what was right before him. It scared me nearly to death, that a wonderful surgeon who can rearrange your heart cannot see pain when it is right before him. Can you explain this phenomenon to me??
I cared for my mother at home after a devasting stroke left her with complete aphasia and apraxia. A second stroke left her unable to swallow and in a questionable state of conciousness, and at that point I had to honor her living will, which stated that she wanted no artificial feeding. I moved her to The Connecticut Hospice (a wonderful, caring place) and sat with her for 18 days while she died. She was 84 years old, and it took eighteen days with no fluids before she finally let go...
Some on-call doctors at the Hospice refused my mother morphine, even when she groaned, or went into Cheynes-Stokes breathing near the end. Despite her chart which clearly stated she had been non-verbal for more than a year, despite me there, saying "If she *is* achieving any conciousness, she's locked in, and experiencing pain," despite her bedsores and moans, those doctors refused pain meds, saying "Oh, no, she hasn't complained of pain, and morphine would depress her breathing and might shorten her life." I can't tell you how many times I've cursed those doctors in my reflective moments in these months after her death. The 15 minutes that morphine might have shortened her lifespan by may have spared her great agony, and certainly would have spared me, her only child and the only one present at her bedside, a lifetime of painful memory.
What are they teaching in ethics these days...?
Credit where credit's due. Dr. Lown restored sinus rhythm but the patient soon died. The first defibrillation that resulted in a hospital discharged was performed in 1960 at Johns Hopkins by a (then) young upstart named Gottlieb C. "Bud" Freisinger. He was the R2 on call that night and a patient with an acute MI arrested before his intern's very eyes. He taught his intern CPR on the patient then ran to the large animal research lab where their experimental Defibrillator was kept. He brought it to the ER, defibrillated the patient, and saved his life. The patient lived for many years after that despite the lack of even aspirin in the acute MI armamentarium in 1960.
kimberly: thank you
mimi: thanks for the wonderful comment. you are right about people today and the shunning of the process of death. unfortunately this is our society.
annab: I am sorry for the bad experience that you had. most docs are trained to spare pain in the end of life, in fact, it is not unethical to give sedation in the end of life even if it will hasten death
helice: again thanks for the wonderful comment. sounds like you had a bad experience with the doctors. on behalf of us all, we are sorry.
kel: I am too ignorant to know this. but thanks for the lesson
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A lot of surgeons and other docs tend to see their patients through the fenestrated drape mentality of the dissociated professional. It's far easier to think that your patient isn't suffering and in agony than it is to acknowledge that you may one day be in that same position. Or that you have failed to appropriately treat those in suffering, possibly for years. We must be as delicate with each other as we are, or should be, with our patients.
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in australia, we have a course called ageing and endings. the unofficial name's death and dying.
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My Dad died about a month ago from a year long battle from having a stroke.I know now I can say that we could have let him go sooner by just giving him morphine and not feeding him, but, I just could not let my dad starve to death. That would had scarred me for life. We fed him intrevenously and I believe he hung around long enough for us to say goodbye and accept his death much better. I know he is now in peace.
The impact of our aging society is only beginning to emerge. Indeed, it's hard to fathom the questions we will face in a world where technology is advancing so rapidly. And it's perhaps even harder to fathom how many of us will be asking these questions.
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Thank you for such a post. This has been a very touchy part of our lives. I might say that it would be better to live in fear with God, be ready whenever will you be living earth, cause we really don't have any idea when will be our last day.
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Well, whether we are ready or not, we like that fact that we die or not, we all will die and no one is really a superhero who never will. It will be so wise to be ready for the time when it will happen and help our families be prepared anytime for that. :-)
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I think a huge problem is that when living life people do not want to deal with the topic death. It feels uncomfortable and it is for sure frighting. I think that a will or plainly saying what we would want in the worst case is very important for family members as well as yourself.
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What an article! Last year, I thought about the subject extensively when my father was being treated for his stomach cancer. The man was begging us to be taken home and die in peace, but the doctors insisted on torturing him in the hospital, which lasted almost one month before he passed away. I should mention that I am a physician myself, a cosmetic surgeon in Los Angeles, yet I regret for not fulfilling my father's wishes and follow the teachings of our medical schools and the instructions of my fellow doctors.
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You mean they teach docs about dying? I'm surprised anyone in the US even talks about it. I was present holding the hands of both of my parents while they died. My mom died at home in my bed surrounded by grandchildren and great grandchildren. We talked about it and they saw the whole process, even the not so pretty part. I am so glad we had and took this opportunity. It was more valuable than any amount of talking about it. I'm so sorry more people don't allow the death process in their lives.
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I think that at those times, we in America die for economic reasons, I mean life is too expensive and every year is more difficult to survive with all the taxes and low salaries
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