In late 2011, I wrote an essay called “How Doctors Die.” Drawing on my observations and experiences as a doctor, I reported that doctors tend to seek less end-of-life care than ordinary patients do. They know when further treatment is likely to be futile and when life would cease to be worth living. The point I wanted to make was that all of us should have the choice to die that way if we wish—at home, with family, without dramatic hospital interventions, without pain.
The response to this simple idea was overwhelming. I read thousands of comments people posted online regarding the end-of-life care of loved ones. They told of near-dead relatives being assaulted with toxic drugs and painful procedures for no good reason. I am haunted by one description of a patient who could neither talk nor move, begging with her eyes for it all to stop. Thankfully, such stories are slowly becoming less common, and, with an advance directive or POLST, you have considerably better chances of having a peaceful death, if that is what you want.
While the article rarely provoked hostility, it did, among some readers, prompt skepticism. I’d written the article in a personal, anecdotal style, so I rarely made use of numbers, studies, or charts. For example, Ezra Klein, writing in The Washington Post, wanted to see more evidence for my assertions. “Does anyone know of data on end-of-life spending for doctors?” he asked. “Or even on the percentage of medical professionals who have signed living wills?”
This essay is an attempt to address such questions. Perhaps it should be viewed as a set of endnotes to “How Doctors Die.” For every assertion of mine that was based on observation, I’ve looked for relevant scholarly evidence that might support or refute it. Here is what I found:
First, and most important, is the question of whether doctors, for the most part, die differently. One of the clearest indicators we have is a survey from Johns Hopkins University. It’s called the Johns Hopkins Precursors Study, and it’s based on the medical histories and decisions of students from the School of Medicine classes of 1948 through 1964 who volunteered to be part of the survey. According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.
I also asserted in “How Doctors Die” that CPR is rarely as effective as people seem to think. What people have seen on television is at odds with happens in real life. A 1996 study published in The New England Journal of Medicine found that CPR as portrayed on television was successful in 75 percent of 60 cases and that 65 percent of the patients went home. In contrast, in a 2010 study of more than 95,000 cases of CPR in Japan, health professor Hideo Yasunaga and fellow researchers found that only 8 percent of patients survived for more than one month. Of these, only about 3 percent could lead a mostly normal life. A little more than 3 percent were in a vegetative state, and about 2 percent were alive but had a “poor” outcome.
My sense that there’s a yearning among ordinary patients to have more peaceful deaths has been echoed in the research of University of Wisconsin-Madison nursing professor Karen Kehl. In an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” Kehl analyzed a collection of relevant articles and, based on their contents, ranked the attributes of an ideal death as follows: being in control, being comfortable, having a sense of closure, having one’s values affirmed, trusting in care providers, and recognizing impending death. Hospitals cannot help with most of these things. Unfortunately, most patients do not see their wishes fulfilled. A 1998 study published in the Journal of the American Geriatrics Society looked at Medicare patients and found that, while most said they preferred to die at home, most died in hospitals.
I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction, especially when there’s nothing in writing. A 2003 study published in the Journal of Clinical Oncology found that most patients and families agree in theory that patients should make their own end-of-life decisions, but in practice about half of families override the stated preferences of patients. They have disagreements about the use of life-sustaining measures, and they lack written documents to resolve the matter. In contrast, a 2010 study in The New England Journal of Medicine found that people with advance directives usually receive the care they’ve chosen.
Every doctor has heard stories about people who have had miraculous recoveries, despite a doctor’s prediction. (Such stories are one reason doctors hate to make predictions.) But the sort of cases I’ve written about are those where all treatment has failed and the patient faces death soon. When applied to a patient in the last stages of a terminal decline, CPR is particularly ineffective. A 2010 study published in the journal Supportive Care In Cancer looked at terminal patients who wanted no CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, 48 hours later, all were dead. Well-meaning CPR advocates talk in terms of “survival,” but all the term means is that the heart again beats on its own. In the above example, survival was 11 percent, but “survival” as often understood by the public—regaining a reasonable quality of life—was zero.
We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.
Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC. This post was originally published at Zócalo Public Square, a non-profit ideas exchange that blends live events and humanities journalism.
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When discussions are held with families and patients about all their options including the anatomy of a code situation and palliative care and allowing a natural death, many people choose less than aggressive treatment without any specific recommendations or advice. I don’t think you need to fear a lawsuit for educating your patients. And they can’t make an informed decision without real information. “Do everything” is rarely the result of a real discussion that communicates the information people need.
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Found your article in the Readers Digest this month and very much appreciated it. As a young nurse I worked with a child who was a “near drowning” victim as a toddler. He had suffered severe brain damage. As I fed him through his g-tube, performed passive range of motion on this sweet little, completely unresponsive child – his mother stood and told me of the heroic efforts made to “save his life”. I wondered then if I would have the courage to put a stop to those same efforts if it were my own child. Since then I have worked with a young quadriplegic woman on a ventilator who’s husband told me of the many times she was resuscitated in the hospital – at his pleadings because he couldn’t live without her. She could move her mouth and asked me on several occasions to “pull the plug” as she watched her family crumble around her. An 87 year old man in a long term care facility, totally bed ridden, non-communicative with a feeding tube who was a “full code”. I currently work with a middle age man who has been in a vegetative state for 26 years now after being struck by lightening, being resuscitated and having every “life supporting” procedure done. His life now consists of being rotated from his bed to a reclining chair and an occasional wheel chair ride outside when the weather is fair. It is a private home setting and yet no family or friends visit. What was the “life” that was “saved”?
M. May
Thank you, Dr. Murray, for your second illuminating article on more peaceful dying. After I read “How Doctors Die” i made my first Advance Directive, with wholehearted willingness. Your piece confirmed my life experiences of my mother’s tortuous death by machines, while suffering at age 88 a pitiful set of cracked ribs from CPR, as well as my wrenching experience with a dear friend and his family fighting his terminal cancer till the bitter in the ICU. I shared my AD with my son, a doctor himself, who totally understood and supported my decision. Now this article backs up our strong subjective experiences with harder research. I enjoyed this comment exchange as well. It is a great pleasure to see such discourse about such a challenging and vital topic. I am 70. I am happy to have reached this point of decision making perhaps in good time.
Carolyn McCall, Ph.D.
Both of my parents were “assisted suicide”. I plan to do the same.
I live in Spain, and surprisingly for a Catholic country there is now a legally binding advance directive available here. It has to be signed and witnessed in front of a notary. Mine is now lodged with my computerised medical records, and I now feel a little safer that if I get carted off to hospital I will not have my life prolonged artificially unnecessarily. I hope!
All and all these all belong to reactive care even person has directive.
if anybody want some idea of how doctors die, one may read ‘Dead Doctors don’t lie’ by vetenary doctor and family doctor Dr. J Wallach.
Just eat your real food and make sure you supplements the gap from good source. Take death as natural. You body wont give panic surprise to you.
But someday you will die. If need peaceful death, make sure you put written directions.
Those of you take health of the body for granted. I have message for you.
Buddha is a human being. He said ‘Arogya Parama Labha”
you own health is the greatest asset’
As a nurse this subject is close to my heart, very close.
As of a couple of years ago, the AHA (American Heart Association), which gathers statistics on all codes nation-wide claimed that 40% of ALL codes had a good outcome. They define a good outcome as having survived to discharge. Whether discharged to rehab, home or a respiratory sub-acute (where people who live the rest of their days in a chronic vegetative state go), I do not know. But when you look at sub-sections of the population who are frail due to age or illness that percentage quickly becomes zero.
I am healthy and relatively young and I have an advance directive on file in my chart with my doctor. Obviously this is not because I’m old or sick, I’m not. It is because I have people who love me and I would not want to put them though the anguish of having to make end-of-life decisions for me without a clear, written guide from me. I have talked about it with them but that is not enough. I would not want them to have to rely on memory of what was said or interpretation of what I might have meant.
I have seen many family members of patients who, being asked about what their loved one would have wanted, are at a complete loss. Even when further medical care is futile and everyone knows it, making the call to “pull the plug” is immensely difficult. Impossible for many. It is really too much to ask. They may regret not having done “everything” or they may regret causing further suffering to no avail. but which would they regret more? The ensuing paralysis is particularly true of primary caregivers who have for many years made caring for the patient the center of their lives. For them, the void left by the passing of said patient is the most vast and terrifying. There are no easy answers to this. Doctors and nurses can’t easily make these decisions for them – not in the land of liability and distrust. In any case, who’s to say we’re more qualified? we are mostly strangers to our patients in the acute care setting.
Having an advance directive is the best answer I’ve found to this issue. At least then there is a guide for those left behind and their caregivers.
I am a first responder 23 years now. Oddly I am a security patrol officer but I always arrive first. I have performed CPR on a 89 year old lady once. I too broke her ribs and the crunching noise bothered me. She lived 2 days and died from not being able to regain her ability to breathe on her own. I anguished over prolonging her peaceful death for 48 long hours. I did my job and I did it right. Even so, I did not feel good about it. I wanted to ask her to please forgive me. Another elderly lady I encountered had a DNR and boy did she let you know it. She died peacefully at home. I was there when she died. She was the first person I ever met that planned for the end and did it without drama. Such a brave soul I respected her courage to get it over already. I couldn’t agree more. Your article touches on such an important issue. accepting death as a natural process. Remove the fear, plan and face the end with dignity. Doctors know the odds better than most. Its not a surprise they plan, its a perk of the job. Just as I over the years lost my fear of death I imagine Doctors too see so much of it that they too have a lot of time to accept they are not exempt. The how becomes so much easier when we get past the idea.
April 16 is Annual National Healthcare Decisions Day (NHDD.com) it is an offshoot of my thesis. Please check it out. AgingwithDignity.org has an easy to complete form called “”5 Wishes,” which I highly recommend. Please help your family, friends and caregivers. Let them know what you want. Your wishes do matter.
What great reading and ideas to consider . Thanks for taking this thoughtful time . I intend posting this to my facebook group so they can benefit from the conversations. Here in Canada is not so different . We are ” in the same boat ” in the end .
We also need to talk with families about letting go. I’ll never forget doing CPR on a woman dying from cancer who was so frail that with every compression I could feel her ribs break under my hands. Meanwhile her husband of many years was standing there telling us that she could not die yet. How much kinder would it have been for the husband, and much less painful for this poor woman if someone had sat down with them before they reached this crisis point?
Oh my goodness! Amazing article dude! Thank you so much, However I am having troubles with your RSS. I don’t understand why I am unable to join it. Is there anyone else getting the same RSS problems? Anyone that knows the answer can you kindly respond? Thanx!!
Your article reflected exactly how I feel after working in ICUs for over 20 years as a RN and watching my grandmother die of cancer. I wish more patients and their families were informed with facts so they could make better choices for themselves.
And this completely rational, most would say no-brainer, outline to a more humane system for everyone, including doctors, patients, and families, is pretty much exactly what was labelled a “death panel” by the right and thus got removed from Obamacare.
Ouch!
Thank you for these excellent articles and comments. I live in Canada so some of the particulars here are different (especially financial), but the important underlying principles are the same.
My father is 91 and has become a quite frail physically and mentally (especially memory) rather suddenly. He, for some time now has been ready and preferring to die. And, as it is his wish, I concur. I see that he has virtually nothing to look forward to in life and he is the last of his cohort – wife, all siblings and siblings-in-law’ having passed on. He asked me the other day if I thought he would die abruptly or just fade away. I felt honesty was best and told him that, alas, as I understood it, the latter was the more likely. A down side to our medical prowess.
Mum had the ideal death, IMO. I was with her Sunday night after a two week hospital stay that saw her rather low. That night she was her perky old self, planning on going home the next day. Well, during the night she did. In a grander sense than she had envisioned. I insisted there be no postmortem unless legally essential (having seen lots first hand). To what end? I knew what I needed to know about her death – it was due to good fortune after a lifelong battle with rheumatoid arthritis. To this day I rejoice in mom’s passing – she fell asleep happy and warm. As, also that evening, my cousin had brought her a warm shawl for her perpetually cold arthritic shoulders. She was so thrilled! Though not at home, family had all visited within that last week. She was 85.
As a 66 year old retired RN I have to agree with you and let you know nurses feel the same way. The public expectation and thought is when someone dies it is because the doctor or nurse did “something wrong”
They do not see death as the consequence of life. Also the most stupid comment I have heard in my career is “If there is life there’s hope.”
I would not any treatment if my chances for a recover were next to nil. You would just be wasting health care dollars that could be used on someone young who could benefit from it.
Absolutely agree with you, and I would echo your compliments to Nora’s comment as well.
Nora Miller –
Thanks. Those were some of the best comments on advance directives and end of life care that I’ve seen in a long time.
Dr. Mike — With respect to the medical tort system, the most frustrating aspect to me is that the medical cost impact of defensive medicine and how doctors communicate with patients is impossible to quantify with any precision. While malpractice insurance premiums and court awards from malpractice suits are easy to quantify, defensive medicine just isn’t. Even when it’s a part of a doctor’s decision in a particular instance, the decision may also be driven by patient expectations and the opportunity to generate revenue for the hospital.
I strongly suggest that the cost impact is fairly significant and that the fear of litigation pervades the medical practice culture. It influences not only what services, tests, procedures and drugs doctors decide to order or recommend but even how they communicate with patients. If we want to bend the medical cost growth curve in the future, we’ll have to do a lot better in this area. That means both sensible tort reform and much more widespread use of living will and advance directives.
Experience shows that a majority of families of patients who have advanced directives feel that their family member had a more positive experience in the last months of life. This is validated by studies involving people in hospice and people who have exercised their legal right to death with dignity in those states where such laws exist. The question, it seems, is not whether ADs can be an essential part of both improving healthcare quality and managing costs, but how we do a better job of using them.
I see three criticial lessons from this discussion that both healthcare professionals and people in general can benefit from:
1. If we establish a standard of discussing an advanced directive with all people, as a part of an annual physical perhaps, then the fear factor can be minimized. If the doctor can say “we do this for everyone” then those who are healthy will not fear that the doctor is “not telling them something”. I also like the idea of some kind of monetary incentive to have one in place by, say, age 55. This incentive could involve some kind of rebate or discount on services for the patient, but definitely must provide reimbursement for doctors to take the time to do it right.
2. Note that requiring advanced directives for all people (patients and family members alike) might mean that doctors and hospitals can feel more comfortable about following them in the face of family dissent. Rather than forcing “tort reform” as a brute force method of protecting against wrongful death suits, the AD requirement might carry its own legal sanctions that addresses the ability to sue. I’m sure this is a complicated issue, but we certainly have other laws like this, so I assume the issues could be worked out in such a way as to reduce the likelihood of suits without compromising rights in cases of clear negligence.
3. I think it might help if we make a conscious effort to recognize and verbalize the difference between how and when we apply CPR and other life-saving efforts for people with otherwise healthy bodies, and how and when we do or do not use those efforts for people with terminal illnesses or unsurvivable injuries. This aligns with the important verbal distinction often made between the negative term of suicide in an otherwise physically healthy but depressed person, and positive terms like patient-controlled death, physician aid in dying, or death with dignity in an unequivocally terminal person.
Making ADs a standard, incentivized part of medical care, reducing resistance to following those ADs, and passing death with dignity laws in all states will have two critical effects: better deaths, and better outcomes for those left behind in the form of less emotional trauma, fewer needless services, and reduced costs. No one is happy when a loved one dies, but AD use clearly helps patients and families face the death more easily and with greater comfort.
It was meant more as hyperbole to make a point – clearcut requests for limited care should always be honored – something I do all the time as a Hospice medical director. But think about why it is that “docs die differently.” It is knowledge and insight that the non-medical person would not be expected to possess. But, outside of the hospice setting, my ability to present that knowledge in the form of a firm recommendation to limit care is greatly diminished by the current tort system. Tort reform has been discussed here before with a general consensus among THB readers that there is not much wrong with the way things are. Without even a desire to reform, there is not much use talking about what reform might look like. So just know that no matter how much y’all think you know about us docs, the advice we give you will always be tainted by the spectre of a tort. Too bad for you.
Dr. Mike –
I don’t understand your comment. Are you saying that avoiding a potential lawsuit requires you to ignore living wills or family requests that call for anything less than a full court press when the patient can’t communicate or is no longer competent? If so, what’s your recommended fix to your perceived litigation risk?
Sorry, but my desire to avoid the unpleasantness of a tort claim trumps your desire to avoid an unpleasant death.
I think it’s interesting to note that roughly 75% of people who die in the U.S. each year are 65 or older and thus eligible for Medicare. We hear a lot of debate in this political year about how to reform Medicare so it can be sustained over the long term. One side wants to continually squeeze provider payments and have an Independent Payment Advisory Board make adjustments to covered benefits if costs rise faster than expected. The other side wants to use a premium support model for people younger than 55 and thus shift more of the financial risk onto those beneficiaries if costs grow too fast.
I wonder how much money could be saved if far more of today’s elderly either executed a living will or advance directive or at least discussed with key family members what care they want and don’t want in various end of life situations. It is a colossal waste to force expensive care onto a dying patient that doesn’t even want it but the spouse or adjust children had no guidance about what to do because there are no appropriate documents and the subject has never been discussed.
Factor in the fact that most of the adult children haven’t yet come to grips with their own mortality and the path of least resistance becomes “do everything.” Living wills and discussions with family members about this subject are things today’s elderly can do that will not impact their Medicare benefits one iota and will not force younger generations to take on more financial risk if medical costs rise too fast in the future. It looks like a no brainer to me that could probably be encouraged by modest financial carrots and sticks such as small discounts from or surcharges added to the current Medicare Part B premium depending on whether or not you have executed a living will and the information is stored on a registry that is readily accessible to providers and family members when needed.
Personally I think according to your article here that most doctors have the right idea. i personally do not want to be kept alive by any artificial means. i find your article very informative, in that regard, that most of us know when its time to pull the plug. In the contrast that it is presented (old age, children around the bed, life lived, die happy sort of way) it hits the nail right on the head. But i wander, are the feelings the same in cases of horrible accidents or other abrupt life endings?
I want to die with the EMR clicker in hand and CPOE device opened to CDS Big Data on death.