Our final days are not like theirs. But they should be.
By Ken Murray, MD from zocalopublicsquare.org
Also published in Reader’s Digest Magazine July 2014
YEARS AGO, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. The diagnosis was pancreatic cancer. His surgeon was one of the best: He had even invented a new procedure for this exact cancer that could triple the five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life.
Charlie was uninterested. He focused on spending time with family. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him. Several months later, he died at home.
Doctors die, of course—but not like the rest of us. What’s unusual is not how much treatment they get compared with most Americans but how little. They have seen what is going to happen, and they generally have access to any medical care they could want. But doctors prefer to go gently.
They know enough about death to understand 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. They know modern medicine’s limits. Almost all medical professionals have seen “futile care” performed. 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. It buys 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.” Some medical personnel wear medallions stamped NO CODE to tell physicians not to perform CPR on them.
The Drawbacks of “Do Everything”
How has it come to this—that doctors administer care that they wouldn’t want for themselves? The simple, or not-so-simple, answer: patients, doctors, and the system.
Imagine that someone has lost consciousness and been admitted to an emergency room. When doctors ask family members—shocked, scared, and overwhelmed—if they want “everything” to be done, they answer yes. But often they just mean “everything that’s reasonable.” They may not know what’s reasonable, nor, in their confusion and sorrow, will they ask or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether reasonable or not.
People also have unrealistic expectations of what doctors can accomplish. Many think of CPR as a reliable lifesaver, when the results are usually poor. I’ve seen hundreds of people in the emergency room after they got CPR. Just one, a healthy man with no heart troubles, walked out of the hospital. Even though only a small percentage of healthy people will have a good response to CPR, we would always do it to give them that chance. But with terminal people, virtually no one responds. If a patient has severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal and the odds of suffering are overwhelming (see sidebar).
Physicians enable too. Even those who hate to administer futile care must address the wishes of patients and families. Imagine an emergency room with grieving, possibly hysterical, family members. Establishing trust under such circumstances is delicate. People may think a doctor is trying to save time, money, or effort—rather than attempting to relieve suffering—if he advises against further treatment.
Even when the right preparations have been made, the system can still swallow people. One of my patients was a 78-year-old named Jack; he had been ill for years and had undergone about 15 major surgeries. He explained to me that he never, under any circumstances, wanted to be placed on life support. One Saturday, Jack suffered a massive stroke and was admitted to the emergency room unconscious. Doctors did everything possible to resuscitate him, and they put him on life support. This was Jack’s worst nightmare. When I arrived and took over his care, I spoke to his wife and to hospital staff, bringing in my office notes with his 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. A nurse, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it; 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. I could far more easily have left Jack on life support against his wishes, prolonging his suffering. I would even have made a little more money, and Medicare could have ended up with an additional $500,000 bill.
Choosing Quality of Life
Doctors don’t overtreat themselves. Almost anyone can die in peace at home. Pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity, offers most people better final days. Studies have found that people in hospice often live longer than people with the same disease who seek active cures.
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 spread to his brain. With aggressive treatment, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Torch decided against treatment and simply took pills for brain swelling. He moved in with me.
We spent the next eight months having fun like we hadn’t had in decades. We went to Disneyland, his first time. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He had no serious pain and remained high-spirited. One day, he didn’t wake up; he spent the next three days in a coma-like sleep, then died.
Torch was no doctor, but he wanted a life of quality, not just quantity. 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. There will be no heroics; I hope to go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
Ken Murray, MD, is a retired clinical assistant professor of family medicine at the University of Southern California.