Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
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.
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—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).
Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.
How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.
To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.
The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.
But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.
Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.
Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.
It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.
Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.
We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
Filed Under: THCB, The Insider's Guide To Health Care
Tagged: Cancer Treatment, End of Life Care, futile care, How Doctors Die, Medicare, Physicians Dec 16, 2011
Ken,
Your article moved me. It is a much more elegant explanation than I could have provided regarding my own beliefs about end-of-life and/or futile care. As a primary care physician who has witnesses the tragic loss of dignity in dying over and over again, we seem to be on the exact same wavelength on this issue. Thanks for sharing.
Great article. Everyone should read it. Interesting that the people who know the most choose the least care.
It will be interesting to read if anyone attacks this post. “What, doctors won’t practice what they preach!?” Or, is it really about doctors are afraid to be frank and direct with people? Or, is it this culture doesn’t think that death applies to people who live in an advanced society.
Personally , the more advanced people seem to think they are getting, the more regressive and primitive they seem to think and act in the end.
I like this post. But, reality is not want people want at this site, eh?
Please, spare us.
Like I really am concerned about what you think when I write a comment.
Thanks for the validation of my last sentence in the prior comment, SIR!
If you don’t like what someone says, how about this for an idea, ignore it!?
But, you just have to reply, don’t you. Await your next last word, eh?
The author does not cite a lot of data to support his assertion, but it certainly rings true for me. It also tends to extend out to their families. I think a lot of it is that we actually talk for and plan fro what we want at the end of life. Most people dont think about it until it happens.
Steve
Doctors give patients treatment options, not death options. Patients always think they can beat the odds, that’s why Las Vegas makes money.
That’s oversimplifying it a bit but it gets to the point how the research I have seen conducted on how patients view this – ‘as literally as long as I have a chance I will do it.’
Personally, I would not go thorough some kind of intensive medical intervention with dramatic side effects if it just increased my chances marginally of living another say 6 months with a horrendous quality of life. I would imagine I am outlier among the general public though.
A great and poignant piece… Difficult decisions are usually involved. When I was a resident, I typically ran “soft” codes, for those who can understand this med lingo. Hated the hour-long flogs that more aggressive residents would force. They were truly beating dead horses.
With the advent of indifference by our colleagues as they spend more time with the computer electronics ordering and less time with the patients, I will sooner die than go into the hospital to have my cancer governed by Medicare, point and click treatments, and cut and paste progress notes which no one has time to read except for the payors.
Certainly not what I see with our oncologists or oncology surgeons. I have talked with our guys and Medicare does not dictate care. It does not in my field. What cancer care does Medicare dictate where you live?
Steve
Vitally important little essay. I came across it lat week.
http://www.newshoggers.com/blog/2011/12/hcr-how-doctors-die.html
What an interesting post. “Futile care” must be one of the hardest things to deal with as a doctor…
This post rang true on a very personal level. During my early years in practice, I took a measure of pride in the fact that I never “lost” a patient in critical care situations…youthful hubris. In the years before leaving the ER for business, I felt guilt for the same outcomes…those “outcomes” being “saves” I wouldn’t have wished for myself, my friends, or my family. This post spoke to my feelings on the matter in a way I’ve never been able to voice.
The doctor for whom I work will die from aggravation from knowing her patients have died due to flawed EHRs and CPOEs and know one seems to care. How could these dangerous devices be used for medical care without any oversight? Terrible!!
Janie
“without any oversight? Terrible!!”
Get educated.
I will make it short as compared to many of the others. I spend hours everyday reviewing articles and posting within our profession everyday. The boring part of being a research. This Dr. Murray, this is one of the most insightful and well thoughout articles I have ever read. Some may disagree, but it is rare that a healthcare professional actually describes what many feel.
I feel as though the author tangentially hit on this point, but did not elaborate. And that is many times doctors and researchers (sometimes they are the same) often try to convince patients to fight as long as possible or recommend a course of treatment they know may not be best simply for data. There was a play (and later a movie I believe) that did a great job on this topic, called Wit. At what point does a patient stop becoming a person and start becoming an experiment. The output being data rather than quality of life.
Yeah, we see those ads on TV (during prime time when air time is most expensive) for famous cancer treatment centers drumming up business.
Thoughtprovoking – I feel should at least get people to thinking about end-of-life-decisions. However, too much emphasis on decision making in the ER. I don’t think it unreasonable for a family to “do everything” in the moment when a person is unexpectedly unconscious – their family member may be the one who survives. But when futility becomes apparent, I agree health care providers need to more strongly counsel toward comfort care. Example: my father-in-law fell down a flight of stairs and was unresponsive at the scene. CPR/defibrillation used and he was transported to the local trauma center. Over the next 24 hours as test results came in, it became apparent he had a C2 spinal cord injury as well as hypoxic injury from down time. Our family elected to institute comfort care measures, he was extubated and died within minutes surrounded by family.
What a terrific article – very thoughtprovoking – would like to share my thoughts/experience regarding healthcare in Denmark (socialized medicare) where I was born and raised.
I would love to hear your perspective since you have lived in Denmark where socialized medicine is practiced.
Thank you. Look forward to hearing back from you soon.
As a society,we are in the Dark Ages when it comes to end of life care and it is bankrupting our healthcare system. As an an ER doc for 34 years being “forced”to resusitate patients at the insistence of family members or because there was no available advanced directive is very frustrating on many levels. In many situations,it is a cultural/religious issue and in those instances,the informed advice of a compassionate physician doesn’t trump orthodoxy.People are absolutely entitled to their beliefs and I (and my MD colleagues) will always honor their wishes. But should we as a society pay for futile care to satisfy someone’s religious belief ? I know it sounds cynical,but every ER doc knows that if Billy wants “everything ” done to save his 89 year old demented,bedridden,tubed dear Dad, but had to pay for it,he might find a new religion.
Dr. Schwarzaman, you just gave me an idea. It’s not politically or socially feasible but I’ll float it anyway—
Medical professionals are not obliged to participate in an abortion if they claim a religious objection.
Some religious faiths refuse to allow blood transfusions and (except for minors) that objection is honored without legal consequences.
What would be the consequences of a physician (or any other medical professional) allowing life to come to a natural end, without heroic interventions, citing personal religious beliefs? I’m thinking of your example above.
Passively allowing nature to take its course is surely not the same as assisted suicide or manslaughter. Or are doctors held to a different standard from other professionals?
Just asking.
This was a wonderful and courageous piece. I really appreciate this kind of honesty from a Doctor. When I was young, 50 years ago, I wanted to be a doctor, like Dr. Kildare or Ben Casey. So did my mother. In high school I was president of the Medical Club, and enter U.C. Berkeley as Pre-Med. Chemistry 1-A did me in, and I changed my major after one semester.
All my life I was taught to respect doctors. But about seven years ago, while spending every day with my mother in the hospital, my eyes were opened. The system, the attitudes, the lack of awareness, the money, the pressures, etc., I believe, have made the health care system much less than it was intended to be.
At the same time I learned about the value of Nutritional Supplements, diet, and exercise as a way to turn things around in my own case, and take control of my own health. I also learned of the risks in blindly following what doctors and hospitals tell us. I will listen, but I will question every little thing. I will read every label and decide for myself. My medical care is 100% my responsibility. Its my body. If I can learn I will. But I am very sensitive to anything a doctor or nurse tells me.
I believe it is time for a major revolution in the way we train doctors and educate people about how to take care of themselves. The Doctor patient relationship should be more like a partnership, that a parent-child, or master-servant relationship. Patients have every right to question doctors. They should never be forced to stay in a hospital. When the risks of negligence and adverse drug side effects are worse than the symptoms…. beware. Patients must become more proactive, and doctors need to be models of good health. Doctors should not be allowed to become obese or smoke. If they do, they should be put on suspension or retrained. And the medical training itself should change. It makes a ridiculous statement about their ability to care for another, if doctors abuse their own bodies. Doctors should spend 80% of their time on prevention and educating their patient. They should be paid more to keep the patient healthy, than to try and cure him when he becomes ill. The whole system should be turned around. Maybe then doctors will be healthier and live longer and they can be models for us all to live healthier lives. That’s the ideal mission for a doctor…. a role model and a health counselor.
Thanks for this moving article.
Perhaps there will be a gradual societal shift toward more humane intervention, including non-intervention when appropriate.
Very moving and provocative post Dr. Murray.
We should all have such a close relationship with our care-givers that we could have the confidence and trust in the exchange at these critical moments of our lives. I’m sure our care givers would want such trust and confidence with their patients when the time comes for that honest and caring exchange. It does make me long for the family doctor who visited us at home when I was a kid, who knew our whole family, and lived in our community.
I’d love to see it as a book exploring the range of scenarios and daring to tease out the policy conundrum.
The latter is the challenge to ensuring all of us the benefit of such a relationship, the protection from ill-advised care or outright mistakes, and the protection of providers trying to do what’s best for and wanted by their patients.
We could use a comprehensive exploration of the entire process, one that examines the economic, legal, medical, and ethical issues along side of the real human life-death personal side you present here.
I don’t see a simple answer but know the conversation must include all of these aspects and perhaps the solutions tried on a less risky and inflammatory stage than the one we’re trying to hammer it all out on now, the national policy and federal legislation one. This one can’t handle the intensely complex array of issues that come into play.
I’d also like to see the dialog begin with the bedside scene you present, with the players involved including the families and build into the policy level rather than the other way around, hoping that the human side will sort itself out after the fact.
i recall the author of the All Creatures Great and Small series and all the “good cows pulling on their hay” and horses and sheep and such he saved because he was willing to do surgery and “get paid when i catch up” and if he didnt do it they would have sent 4 the knacker man (butcher) and that his babies were born at a midwife’s house (being a surgeon he kept his expectant wife away from hospital) and that he died peacefully at home from prostate cancer~i can honestly say if i were a man i would prefer to die peacefully at home and having seen Wit with the amazing Emma Thompson (nanny mcphee) i can say she did more to promote hospice and death with dignity than any actress of the 20th century:)
have a look at the story of Dr john pollock nz, he did his best in his last few months, rest assured he had his ducks in a row
Thanks for being a voice of reason, at a time when loved ones are scared and ill-equipped to ask the right questions. We should all have more information to make the kinds of sensible end-of-life decisions you speak of.
This article should be the first one read and discussed at every medical school white coat ceremony/orientation in the country!
This is so true..I work as an RN in an Interventional Radiology Suite..you would not believe the procedures we do on terminaally ill pateints..biliary stents…nephrostomy tubes…feeding tubes…its absolutely ridiculous..we are currently scheduling a terminally ill man with colon cancer for ureteral stents…when will the madness stop and let people enjoy whats rest of thir lives and preserve their dignity..I am all for if I am terminal..leave me the hell alone!
blackjack
Thanks for your contribution and I will use it for my school research that I am doing for this website.
Thank you very much for writing this article. I’ve been in these circumstances many a times. I agree with Larry “it is rare that a healthcare professional actually describes what many feel.” This post resonates with the feelings that I underwent as an ERDoc!