How Doctors Die

March 8, 2012

KEN MURRAY, clinical assistant professor of family medicine at the Keck School of Medicine at USC:

This op-ed was originally published at Zocalo Public Square.

“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.”

 

 

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12 Responses to How Doctors Die

  1. Jonnee Western on November 6, 2013 at 7:57 pm

    Thanks for the affirmations. My husband & I have both declared our wishes formally with a living will. I do not want to die alone nor in pain. I do not want to die in a hospital or a nursing home. If it can be arranged I want to go gently into the night, watching opera, a favorite T.V. show with my dogs in bed with me & my family beside me. This I have spoken about to the emotional discomfort of some of my family members. None the less this is what I want. Some of my family members say they want no one with them when they die. My heart quakes at this thought. I want to be with them when they step into the next stage of existence. Wherever they go when they ” die”, I want to be there with them for my sake. My sake, not their request. So I must gird up my loins, pull up my big girl panties & follow their wishes. May they go gently, with freedom, & peace. Thanks for listening.

  2. Ken Murray MD on October 31, 2013 at 9:14 pm

    I wanted to thank everyone for their response, and to let them know I’d seen them. I appreciate everyone helping to continue the conversation on this important topic.

  3. scottsdale plastic surgeon on August 15, 2013 at 8:30 pm

    This article was a great read. So many people just don’t fully understand this. Education is another medicine this article provides.

  4. Lauren-Michele Seals on July 21, 2013 at 12:56 am

    Thank you for writing such a comprehensive, to-the-point article. I am a retired Critical Care RN, and also a lupus patient. I will forward this article to many friends and relatives. Hopefully, those who are (blissfully) unaware of the horrors that can accompany heroic end of life treatments, will better be able to understand my request for only palliative care. I never want to be on the receiving end of a Code Blue, and have told everyone my wishes. Hopefully, this article will help them to accept my decision. And hopefully, I still have another 10-15 good years!

  5. Barbara the juicer on May 7, 2013 at 6:46 am

    You’re right on point. I once knew a doctor with a terminal illness and he just became a different person. He figured he had about two years to live and I must say he enjoyed those years completely. The funniest part was that his terminal illness simply disappeared from his body. He’s still alive today – 20 years after the false alarm. People should concentrate on living, instead of planning for old age, because tomorrow is promised to know one. Excellent article and my apologies, as it was not my intention to stray from the premise of your piece!

  6. Fred Fiastro MD on January 22, 2013 at 7:04 pm

    Dr Murray,

    Just seeing this piece and it is very good.
    Your premise is that doctors typically make different end of life choices.
    Can you share any survey/data supporting this?

    Thanks

    • Ben Corn on February 5, 2013 at 10:58 am

      I enjoyed reading Dr Murray’s piece. I too was wondering if someone could refer me to some articles with a bit more data. My pubmed search was not especially fruitful.

      Thanks,
      Ben Corn, MD

    • Ken Murray MD on October 31, 2013 at 9:13 pm

      The best data comes out of Johns Hopkins, published by Joseph Gallo MD.

      At least this addresses the issue of choice. What finally happens is more elusive, as I can’t imagine who would fund such research. But I think the clear difference in choice mirrors what actually happens. Literally thousands of doctors have responded to the article with statements that it reflected their actual experience, which while not a scientific evaluation, nonetheless has some validation.

  7. Mrs. Pierce on October 3, 2012 at 3:39 pm

    This article was an eye opener. My father has bladder cancer, which is now also in his lungs. While he has chosen chemotherapy, I suspect its for us, his 3 girls. His quality of life is better than most considering his age; however, when it gets to a point where the decisions have to be made, the decisions have already been made in the form of legal documentation. A living will, medical power of attorney, and soon a DNR will be signed. My psychiatrist suggested this article to read and it is an interesting one, indeed. The only thing I’m uncomfortable with is the references to receiving funding from Medicare. My father worked hard for all his life. He has paid into a system that now we have no guilt in receiving assistance from.

  8. Clyde Bain on July 28, 2012 at 8:37 pm

    Thank you for a lucid article about survival and medical care. I hope that when it is time for my life to end that I die with relatively little fuss and peacefully as both my parents were able to do. I cannot abide things around my neck, but I guess I will get a tag that gives my blood type, along with a DNR instruction and emergency contact information in case I am stricken in a place where I am a stranger. This article makes it clear to me what I need to do. Until then I plan to live until I die.

  9. types of gi cancers on May 7, 2012 at 10:03 pm

    Most cancers has a fearsome reputation. Not without reason either. It is a illness that has not but absolutely yielded to the abilities and intelligence of medical scientists and doctors. And, as if the ache from the disease will not be enough, the therapy for most cancers, too, inflicts heavy suffering on the body.

    Most cancers is a illness characterized by uncontrolled and abnormal cell division. Most cancers spreads within the body and destroys tissues when the most cancers cells travel by way of the blood stream or the lymphatic system. The runaway growth of cells is brought on by mutations to the DNA within the cells that makes the cells unable to regulate cell division. This mutation can both be inherited or acquired. The mortality price in cancer depends upon the type of most cancers and where it develops.

  10. Peg Fitzgerald on March 20, 2012 at 11:28 pm

    I want you to know your article is appreciated. Thank you for sharing honestly the reality of what we may experience if we choose heroic measures and extreme medicine. I don’t think the lay person gets that kind of information often enough.

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