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Doctors Die Differently

Posted 01/05/2014

With everything being written about our changing healthcare climate, you’re probably also seeing articles about end-of-life care. During a person’s final weeks or months, costs  escalate from tens to hundreds of thousands of dollars, and all too often for little more than a minor extension of misery.

It puts a new spin on Dylan Thomas:
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Bravo to those who are reluctant to let go, but do consider these same courageous souls are grievously misinformed about the consequences of treatment. With heroic life-prolonging maneuvers, we risk spending our final moments in an ICU, connected to a ventilator, feeding tube, or both, fluids pouring in and draining out. The last words we might hear are those of a frantic intern shouting “Cardiac arrest! Full code! Crash cart!,” the last sound the crack of a rib with resuscitation efforts in full throttle.

All in all, we might prefer crossing over peacefully at home, perhaps after hosting a dinner with close friends. Finally, in our own beds, letting death simply happen as we share some cannabis with family, enjoy the sensation of an old dog (or cat) nuzzling our hand, in the background a Beethoven string quartet, a duet from Otello, or a Jimi Hendrix riff.

An elegant piece on this subject appeared in the business section of the New York Times. I urge you to also read through some of the comments that follow. I’m always fascinated to learn what patients really think of us physicians and how many mistakes (well intentioned, but sometimes self-serving) we’re making.

Working in hospital medicine as I did for 20 years, I and most of my physician friends knew we didn’t want an ICU departure for ourselves. Spend our last months or weeks in a nursing home? No way! We’d even take a pass on cardiopulmonary resuscitation (CPR) since the odds of long-term survival (i.e., actually walking out of the hospital) after CPR are pathetic.

What I learned, from internship onward, was that there was an unwritten agreement among physicians in which the patient-doctor would be the one to call the shots on her treatments and eventual demise. More recently, these have been codified as advance directives, available to everyone and written by attorneys as part of an estate plan. The trouble with advance directives is that often during a crisis nobody can locate the paperwork. (Instead of trying to remember where you put your advance directive, you might try one of these as an alternative.)

Doing everything, then doing less
When you the patient first learn of a diagnosis that might impair your longevity, you quite reasonably want everything done. You’re thinking survival and you’re in no frame of mind to mull even the possibility of end-stage issues. Your doctor and the team she gathers to manage your care all are in synch: restoring you to health is their goal and you’re very glad for this.

But when one treatment leads to another, complication follows complication, and your quality of life starts to fracture, you wonder if it’s really worth it.

You might even ask yourself what doctors do for themselves or their families in these situations. It’s extremely difficult to get accurate information from doctors about this. Remember, you’ve hired this doctor and her team to keep you alive and you may get a sort of confused look if you ask, “Doctor, if you were me, what would you really do?” No one knows for sure how long you’ve got, or really what quality of life you’ve got in store, so their best guess on your outcome will usually lean toward hope and optimism.

Almost no doctor will ever answer your question with “This treatment is too brutal for my liking. Personally, I’d get my affairs in order and rent a beach house somewhere.” In other words, your physician might plan that beach house for herself, but as far as you go, don’t expect suggestions on bargains in waterfront real estate.

And that’s not a bad thing. How far you’re willing to extend your life and hold death at arm’s length is just too personal a topic for your doctor to make too strong a suggestion.

I want to mention one bit of distastefulness and that’s the issue of fee-for-service in which everyone is getting paid to do more rather than less. Internists earn more money pouring antibiotics into Alzheimer patients with pneumonia, surgeons insert feeding tubes to keep the comatose alive, hospitals and nursing homes lose money when their beds are empty. It’s really only after terminally ill patients have been squashed a few times by the semi-trailer of healthcare and the family finances have been eviscerated that anybody seems to finally hear, “We’re sorry we can’t do anything else. Maybe consider hospice care.”

When doctors are patients themselves, the situation is much different
Given their experience with patients–seeing what works, what doesn’t, and which therapies can be brutal—doctors are clearly in a prime position to press the “Whoa!” button. Indeed, it turns out that doctors say “Not for me” more often than you might think. A superbly written piece on this topic, by physician Ken Murray, MD, appeared first online on Zocalo Public Square before going on to be selected for inclusion in The Best American Essays of 2012.

I remember during my training two surgeons who had been friends for decades. One was suspected of having stomach cancer and died during surgery. I later learned he’d told his surgeon colleague that if he discovered metastatic cancer, he the patient was not to wake up.

Sometime later, a different and much beloved physician was diagnosed with intractable cancer. He reviewed the chemo protocol proposed by his oncologist, tallied the side effects, and calculated his life expectancy with and without treatment. He decided it wasn’t worth it, walked out of the hospital, signed up with a hospice service so he could get pain meds (which he never needed), and died peacefully at home several months later.

“He hated a fuss,” his widow told me later.

But before you come to believe all physicians throw in the towel easily, virtually every study about the health habits of physicians show we follow our own treatment guidelines more conscientiously than the patients who’ve been listening to our nagging for years.

If a doctor’s diagnosed with, for example, diabetes, she’ll likely get pretty obsessive about it: a perfect diet, regular blood sugar measurement, eye exams—everything needed for a healthy longevity. No doctor would dream of turning down chemotherapy for Hodgkin’s disease or lymphoma, or immune modulating therapies for multiple sclerosis. In other words, when a treatment will pay off in spades, doctors are at the head of the line.

But when faced with a terminal illness and a treatment that might add a few months–at the high cost of endless nausea, profound fatigue, blurry thinking, no appetite, and loss of sense of humor–most physicians recheck the survival odds and say “Thanks but no thanks.”

A weekly trip to the medical center? “Nope,” they’ll say. Endless prescription drugs to treat the side effects of side effects? “Not for me.” Hospital food, a nursing home, and ambulance rides? “Thanks, but no thanks. Just turn on Placido, Janis, or Jimi and make me a toddy. In fact, I believe I’ll have time for a double.”

Be well,
David Edelberg, MD




Leave a Comment

  1. Deborah Zera says:

    I share your thoughts on this, Dr. E, and I think as the baby boomers go through the nursing home/prolonged death phase with their parents they will realize they do not want this for themselves and begin to work to change legislation for physician-assisted death for terminal illnesses and advanced dementia. In the meantime, there is an organization called Compassion and Choices that can offer guidance and support.

  2. Pam Hutul says:

    Thanks so much for this; very helpful. Having helped both of my parents both transit out of life with medical conditions: one in hospice, one in active, costly, terrifying treatment: it is nice to hear this side from one of you.

  3. I so enjoy reading all of your essays, but this one especially. As a hospice social worker, I share your hope that more people will have the ability and desire to chose to “die differently.” Your writing (and subtle humor) was actually one of main models and inspirations for a blog I started recently on hospice and end of life care issues: thedeadihaveknown.com. The initial weekly postings are more educational, but will eventually be more observational. Thanks for taking the time every week to share your thoughts. They always enlighten, and, often, entertain, too!

  4. Betty M. says:

    So absolutely true. After 15 years as an ICU RN and then watching my mother endure horrendous sufferring for eight months in a nursing home – I’m choosing the beach house.

  5. Susan Barney says:

    My 73 year old mother and I were discussing her end of life options and desires over the holidays. She’s right there with you: glass of Dewars on the rocks, cozy at home with her family, friends and pets and then….I feel sad to think of her passing but know I will help make her wishes happen. Thanks Dr. E, always fabulous insight.

  6. Jill says:

    This is impactful and much needed information. Our society fears the aging and dying processes that we forget the beauty and respect for life that is inherent there.

  7. Ann Raven says:

    Very helpful, sensible advice! Quality of life is the key!

  8. John D. Roberts says:

    Dr. Dave,
    You have done a good service to many people with this article. when it is time I would perfer to just let go and try to be made comfortable and be amoung friends.

  9. Barbara Newman says:

    Excellent column. In the Middle Ages there was a whole literary genre on “the art of dying well,” and I think you’re helping to revive it. Needless to say, those with religious faith should be even more willing to die peacefully and let the “heroics” go.

  10. John Pearson says:

    Thank you for your wise words. I had the great of being my mother’s care-giver in the final months of her life, when she was in hospice care and ultimately was able to die at home surrounded by family. She had seen enough friends extend life with extraordinary measures only to gain a miserable month in a hospital. She knew how she wanted to go, and did it with amazing equanimity and peace.

  11. Kate Maver says:

    Palliative Medicine is a subspecialty of internal medicine specifically designed to assist people with complex, serious illnesses as they navigate these exact quality-of-life questions. You do not have to be six months away from death to consult one. You may or may not have a “terminal” prognosis. Best answer a doc can give to the “What would you do? question is say, “I’d have a palliative care consult.” Chicago happens to have some of the best Palliative Med docs in the country. I’m surprised you didn’t mention this!

  12. David S. says:

    Thanks so much for this article, Dr. E.! I forwarded it to my family members, to hopefully facilitate further discussion. When my father was very sick, I took a lot of comfort in the writings of Stephen Levine, who, I imagine, you have heard of. Thanks again for a thoughtful article!

  13. Sharon Sikes says:

    Wonderful essay, David! Having been to hell and back with successful(16 years now) treatment for breast cancer, I frequently wonder what I will do if cancer drops in again. You’ve given me some questions to ask and I will add more as time passes. I continue to accept only palliative care for MS, given the never-ending side effects that aggressive treatment would bring.

  14. Somara Zwick says:

    Dr Edelberg, thought you might be interested to hear that in our VT county, there is a wonderful hospice choir that’s quite active. Cheers.

  15. Mery Krause says:

    Excellent article, Dr. E. You say what needs to be said, just like Judge Judy and Dr. Phil, even though you probably can’t stand either on of them. I also agree with everything you say and feel the same way about deciding how and when I’ll exit this world, if indeed I’m of the mind to be able to decide. Just hope Sarah Palin doesn’t read this, or you’ll be condemned as participating in the “death panel”. Take care and stay warm up there.

  16. Kathryn Donahue says:

    Thank you for your article. I am an ICU RN of 27 years. I choose to work in an ICU setting that i may educate family members of ICU patients that the option to turn off all the machines is viable and moral, and assuredly would be the choice of the suffering individual in the bed. We are a society that, in general, thinks a “pill” will fix all ailments. The “false” hope that is reinforced in the ICU setting by many doctors is also a piece of this problem, and extends suffering by many, many days, weeks, months. Better to educate and support peace and comfort for the dying, which you have done with this article. Again….Thank you

  17. Leanne S. says:

    Very interesting article. Communication with all family members is so important. No one wants to be a burden on their family, but when it comes to the critical time, emotions get wrapped up and it’s hard to see things clearly. Dying with dignity.

  18. Mrs. Jerome Barnes says:

    My courageous husband who is a retired USAF Brig Gen. Is going through a terminal illness. My best friend sent me this article. I could not agree more with the content.
    Thank you!

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