Years ago, Charlie, a highly respected orthopaedist and 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 six to 15 per cent-albeit with a poor quality of life.
Charlie was uninterested. He focused on spending time with family. He didn’t get 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 everyone else. What’s unusual is not how much treatment they get compared with most North 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 the most heinous criminal. 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, you’ll kill me.” Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them.
How has it come to this-that doctors administer care 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 questions about or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it’s reasonable or not.
People also have unrealistic expectations of what doctors can accomplish. While television portrays CPR as successful in about 75 per cent of cases, real-life results are dismal. In a 2011 Japanese study of 95,000 patients, only eight per cent survived more than one month after they received CPR. Of that group, only about three per cent could lead a mostly normal life. I’ve seen hundreds of people in the emergency room after they got CPR. And just one, a healthy man with no heart trouble, walked out of the hospital. Even though only a small percentage of healthy people will have a good response to CPR, we will 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 an incurable disease, the odds of a good outcome from CPR are infinitesimal.
Physicians enable, too. Even those who hate to administer futile care must address the wishes of patients and families. Imagine an emergency room full of grieving, possibly hysterical, family members. Establishing trust under such circumstances is a delicate process. People may think doctors are trying to save time, money or effort-rather than attempting to relieve suffering-if they advise 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, unconscious, to the emergency room. The 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 the life-support 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.
Another lesson we can learn from doctors? Don’t overtreat yourself. 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 those 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 his 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 football and eat my cooking. He had no serious pain and remained high-spirited. One day, he didn’t wake up; he spent the following 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 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.