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 several years ago. 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.
The very best book about mortality and saying no to excessive and unnecessary life-prolonging therapies is Being Mortal by Atul Gawande, MD, an enormously compassionate physician who follows the end-of-life care of several patients, including his own father, also a physician.
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
Just read this. I’m glad I’ve made the decisions I have when it comes to death and dying. I have never had to do this for myself, but I have for family, the hardest decisions I’ve made, but the right one, the best choice for all involved. What is life if you can’t live? I agree with “Thanks, but no thanks.”
Kris
I choose quality of life over duration and it is my right. It is MY BODY. If duration means tubes, hospitals, side effects and misery and I’m going to die of the disease anyway, I will take quality anyday. I have a living will in every medical file, a copy with my attorney and with a dear friend, no family though. They feel they have to do everything even CPR that breaks ribs on a patient who will die anyway and it is just guilt especilly from that relative who hasn’t seen me in 20 years. I choose no intervention and only comfort care at the end. Dr. E, I am on you side of the debate. Bring on the piano sonatas, sugar cookies, wine and cheese and sunsets.
Donna dufner
Maybe it is time for older folks to wear a bracelet that says: In case of death Do Not Resucitate, thank you.Or simply DNR. My mother had a DNR but they tried to bring her back anyway, until, on the last time, she gave them a mad face. One of the nurses said: I had never seen anyone as mad as that!
Margaret Gonzaga
Miya: I’m not angry, rather sad about the waste of money for a hopeless situation. I could care less about the money. Mom did not want to ‘live’ like that.
Miya: you jump to conclusions. I never wrote that I was responsible for her estate. I never wrote that I spent my funds. My comment is not angry; rather, chagrined about the pain at the end of her life, and the way this health care system works. She never saw an attitude from me as she lay in her coma. If she heard, all she heard was me nearly every day recounting our lives together, holding her hand.
howard
Yes Dr.Edelberg better burst after a good dinner
Cecilia
I truly agree with your article. Thank you for writing on death. 27 years your patient, when you retire, I retire from Dr’s.
Kathleen A.good
The fact that so many here mention horrible suffering is so sad. There is no reason for pain. Doctors need to be more dillagent in making sure people are comfortable. Often times people choose death because of the fear of suffering andthere is no need for it when people can be medicated to avoid suffering. I am a Believer and while I do not personally agree with assisted suicide, I have had 2 employers that chose this. I assisted them to get to the correct Physician here in Oregon, got them to their appointments and then resigned my position. There is no such thing as false hope. Everyone should have an advance directive but many do not.My Job as a caregiver is to ensure my employer has what they need and that their wishes are met, so as they can die when they are ready. In my experience Elderly folks are treated differently. People finish their sentences and rush them through in the grocery line, people axct as though they are not there and look at me and ask me a question that my bpss can answer. I politely tell them to address my boss.No one wants to end up in a nursing home.That needs to addressed and conditions changed because some habve no choice.Elderly people need to feel safe. Look at the Veterans hospitals that had atrocious conditions. No one listened for years. Elderly people should not be told about how much money it cost to keep them around just to suffer. Its their choice and if 99 people choose to have no life saving measures God Bless them but we must respect all peoples wishes.People lose so much Independence and they need to be given what they ask. There are very few people who choose full resuscitation and fewer who agree with it, I will always make sure they have what they wish and keep my personal choice to myself. One elderly man told me once the expense to keep him alive is such a big issue he feared somedaya law would pass to allow doctors to decide, since they know best. Can you imagine? No one should feel that way. But it seems it could happen.
Miya
Great article! I am 71 and have watched my mom suffer the most painful form of leukemia back in the 60s for over a year before they sent her home to die at the age of 45. They performed experiments on her at a teaching hospital during her time there – it was so painful to watch! Then watched my brother suffer horrible things from chemo for 6 months before he died at 42. My other brother suffered from primary progressive MS for many years before hospice ended his suffering in a Nursing Home at the age of 54. My dad lived with me the last few years of his life and I had to almost force him to take the multitude of pills he was supposed to take for his various serious issues because he said he didn’t feel like himself when he took them – something I regret having done to him now! And my sister chose chemo for her Stage IV colon cancer that gave her a few months of horror before she passed at 70. As for me, my children will have to forgive me for deciding “how” I choose to pass over when my day comes. It will not be on anyone’s terms but mine and it won’t be in a hospital bed if I can help it.
Cathy Waldorf
I completely agree with this article. My dad was recently diagnosed with end stage colon cancer at age 81. Surgery was not an option, and he refused chemo. He spent several days in the hospital, and then 2 weeks on a rehab. unit within a nursing home. His two wishes were to “go home” and to “go quickly”. My sister and I brought him back to his home with hospice care, and cared for him there until he passed away only 4 days later. He was able to have many friends and family visit him during his final days. My sister and I were holding his hands and talking with him as he passed away peacefully early in the morning. Even though we are grieving his death, we feel comforted in knowing that he got his final wishes and did not need to suffer very long.
Anne
Thank you so much for this timely article, Dr. Edelberg! I am currently working with a wonderful colleague, who lives in Raleigh NC, to bring multi-generational life planning (including those important legal and medical documents to help families and patients decide and secure the care they want) to the Chicago area. Check out the website: https://silvercompassion.org/
If you have any questions, feel free to reach out to me as I would be happy to discuss doing a workshop through WholeHealth Chicago.
Aline Defiglia
Dr. Edelberg. This is an excellent article. Thank you for your stories and your wisdom.
pamela shaw
pamela
I read “Being Mortal” for my book club. It lead to a wonderful discussion period-I thought the book was absolutely great along with being depressing. My husband then read it and we have highly recommended it to everyone.
Deb H.
Dear Dr. Edelberg, Once again you have expressed such kindness and respect for your patients and others by addressing end of life issues. We all are equal at the end and we all have choices to make. Too often we put off thinking or talking about this topic. You have approached this subject gently, with some humor, and from a unique standpoint, that of a physician. The problem for many of us is that without your knowledge, hope for recovery springs eternal. We lack the knowledge to know when treatment is a false hope. Thank you for writing this article.
Over 20 years your patient,
Beverly P.
Beverly Parkhurst
Dr. David…..Very well written with wisdom and compassion. You have well illustrated the options to choose vs be victim in our own lives.. It’s a healthy decision to talk about these matters when we are in an optimal state of health and mind. Supporting your thoughts is a quote by Dr. Myron Wentz: “we are dying too long and living to short!” I choose to live long and when God calls me home to die quickly. So here’s to nourishing our bodies and living well. Cheers!
Kathy Dmura
Dear Dr. E, I believe you have gone into integrative medicine as you saw it as a path to lead people to vibrant health. Thank you. I appreciate doctors like you!
We all want to go out strong, and avoid the horrible suffering you mentioned. However, sometimes suffering does come to us and then what? Do I despair? Perhaps its a matter of suffering strong- trusting God has a higher purpose and will bring good out of it.
Also, thank you to all the workers in hospitals and nursing homes. There is no higher calling, than to lay down your lives in loving service to others. Thank you for doing all those difficult jobs, which no one today values or thanks you for – but truly are heroic.
Mary DeRoche
Love your articles, Dr. E., but in this one, you left out a critical point, which is that one of the most powerful parts of Gawande’s book is that his physician-father, terminally ill, overrides his own end-of-life plans in a panic. Gawande uses this to show how hard it actually is to turn down treatment, even as a physician who understands, on one level, what the pros and cons of the treatment are. Otherwise, a compelling article on an important topic.
Katherine Erwin
Thanks so much for this. I really appreciate your thoughtful perspective.
Sara McIntosh
Good article in general…it’s a personal choice obviously. Sidebar: You state “Spend our last weeks or months in a nursing home” like that is a bad thing. My mother lives in a Chicago nursing home run by Catholic nuns. The nuns live on premises. I have seen the nuns and staff firsthand tend to people on their “deathbed”. Personally I would consider it an honor to die there.
Last but not least (and admittedly not necessarily related) you might want to check your own staff on “care and compassion”…. I went to your office once which was enough for me. Just sayin.
Linda
Part of me wants to live for another 1,000 years. I’ve spent so much time learning to do things I never had a chance to do. Is life over now? That’s disappointing. Sometimes it seems that my lifespan just wasn’t long enough, or my health good enough. But those days come when I start to realize my time is up, and it’s OK to start to let go. Old age and sickness are real and at this point in my life time, there is no remedy to turn back the hands of time to give a person back the better energy and health we all had in our twenties, thirties, forties–our younger years. I know I am beating a tired horse at this point. I think I’ll have no problem knowing when enough is enough. Thing is, will those around me let me go when I’m ready? Will people treat me with respect? What do any of our lives mean in the end? Maybe it’s these big questions that people are trying to avoid when trying to hang onto life. “I don’t know” is a scary place to be. Thanks for the reminder to get the paperwork ready before I lose myself into vast universe of a daffodil blossom and another lifetime I cannot imagine.
Teresa
Hi Miya
I think you misunderstood this article. Having specialized in geriatrics for almost twenty years before transitioning to integrative medicine, I can tell you that my colleagues and I would always leave end of life decisions to the patient and his/her family unless there had been an advanced directive to the contrary. In the extended care facilities that were part of my daily rounds, there were always patients who had been unresponsive for years. These patients were given top notch care and often attended by very devoted family members. Chicago, being a very large city, had facilities in all sorts of neighborhoods and generally, the quality of care was all very excellent, no matter what the family income happened to be.
The gist of this article was simply to say that doctors themselves usually don’t want this kind of care for themselves and I urge you to read the book “On Being Mortal” that I referred to.
Dr E
Dear David Edelberg, I appreciate your kind offer to except comments. We shall see if mine is allowed, before I decide upon your sincerity. I am just a lowly Nursing assistant. Consider you and your colleagues the reason why people generalize us as such. You sure don’t make my job, nor my co workers, including the RNs and LPNs who work in facilities any easier, with your public post that clearly shows you find us less than qualified as care providers. No Matter. Our Job is not supposed to be easy and you certainly haven’t the “Power” to make it worse. Thank you for debunking the “They stick together crap.” It seems you have you forgotten, that you work for your patients, They employ you to provide a service. How dare you decide for others how they should perceive what quality of life is. Your opinion is no more important than theirs in this area.You make it sound as if death can be made nice and neat if everyone would just agree to agree that there is no need for hope when you say, and how is it that people like you and your example in the article get to die at home peacefully, (And don’t always require pain meds) but the folks who are in hospital have horrible conditions, such as tubes and desperate medical staff? What they now know is most of you are thinking, “whats the use?” This person is taking up space. You are paid to do a job and it isn’t to convince people to feel like a burden and one more thing. A study shows people with higher incomes live approximately 10 years longer than poor people.You will never have to decide between heat and medication. The will to survive is why we have it so well, since our servicemen had just enough to ensure our freedom. Some people don’t have the means, nor the family to be in a nice cushy home and there are new treatments every day and facilities that provide staff that love and respect the residents. I understand why you may not fell a warm welcome reading this article. You sure were thorough with why its better to give up. Tell me, where can one go to get the support and professional service where medical staff has not decided when its futile and are just going thru the motions, thinking the patient is unaware of the resentment you feel according to this article? If I’m full code then you don’t get an opinion unless your listed on my medical paperwork as someone who does. The fact that you don’t understand you have injured peoples dignity with your comments is a surprise. I’m not surprised that you fail to realize people opt for early death because they fear pain and that is so sad, since pain can be managed to where childbirth is an unknown event with proper prescribing. People fear they will be left for hours in their own waste because they hear horror stories that are not true. They are ensured the utmost respect and will not feel as if they are a Burdon if I have the honor of being employed by them. And if they ant to go to the hospital, whether you or hospice prefers it or not, I will get them there, because maybe they are afraid and feel better there. I hope its not your place of business.
Miya
First, I’d like to address Howard, the commenter below.There is no way you are legally responsible for your mothers debts. Unless you are part of her estate. if you spent your own funds and are now angry since youd rather have given it to family, Good news! Your Mother is your family and I’m sure it was not a waste to her. I pray she did not understand your attitude as she lay in coma. Its been proven that people who are “Brain dead” or otherwise have been able to hear and understand. They just can’t respond, Now they have devices that allow. communication with people trapped in their bodies. People are deserving of last wishes and articles like these make me sick. They imply, and convince people they are a burden. Sorry for the loss of your Mother. Your money can be replaced.
Miya
Thank you for a great article. Not an easy topic for many, but interesting take. Of all I seen with family, friends and my many decades of nursing, I doubt I would want any heroic measures or in the case of terminal illness, treatment that would prolong my life while giving little quality of life. Hard to say for sure without actually being in those circumstances. Again, appreciate your writing on this topic.
Cyndi Cunningham
Last year my mother, 85, passed. She was unconscious the last 5 weeks. Heart, kidney, etc., etc. Even with Medicare and LTC, the out-of-pocket was $18,000, for that period. Other family members thought she might wake up, and the docs were willing to do more surgery. What a waste. I hope Dr. E.’s thinking will become more accepted.
I would prefer to leave that $18,000 to my family.
howard