I read a book. It got me thinking about an important subject, which in the light of Terry Schiavo, should be discussed more. So I decided to post it here.
I checked Final Exam by Dr. Pauline Chen out of the library on Sunday afternoon. I finished it last night. It is an excellent, well written, and extremely thoughtful book. Chen is a liver transplant surgeon that is interested in death, and specifically in how doctors cope with death. Chen argues that denial of the inevitable, and physicians’ collective failure to talk about death is a major problem. As a patient, I agree with her.
I am interested in how others cope with some of the things that I, as a patient, saw during the course of my treatment. I wondered if the, "Um, we need to start thinking about hospice care," conversation the doctor had with my roommate in a California hospital, who was dying of colon cancer, was the right approach. I wondered if I did the right thing by walking by him on my way to the restroom, and just engaging in small talk. He’d always smile. But I never said, "I’m so sorry." Was it wrong for me to not express empathy?
I wondered about what I saw in the chemo center when I was taking Remicade. I wondered about the lady I sat next to in the waiting room. She was elderly, emaciated, in a wheel chair, and eating Utz pork rinds. She was putting brutal poison into her body all so she could live for a few more months. Why? Was there some sort of monumental event that she had to keep herself alive for? I think about the woman who was always accompanied by her husband. He was a toothless man in his 70s. He never said a word. I could tell that he knew that his wife—who was undergoing chemotherapy and radiation for lung cancer—was going to die. But he stood there with a loving smile on his face as the poison entered her body. It was as if somehow the bask of his love for her would magically work, and take the cancer away. The wife disappeared from the chemo center by my third Remicade infusion. I had overheard her schedule. I assume she died.
Chen has these stories too. She even writes about stories of death from Crohn’s Disease and ulcerative colitis. She writes about how various patients accepted their fates. And how last wishes are sometimes not granted. These stories were brutal to read, but I am glad I read them.
Chen has a problem with our new societal religion—a faith in technology. She thinks that technology provides hope where it doesn’t exist to patients and their families. She thinks that we, as a culture, have some how confused technology with love; she notes that loved ones, even if they know the patient doesn’t want it, often have problems with "pulling the plug." Chen believes that technology can help doctors to deny the inevitable; she notes how many surgeons artificially keep a dead patient alive until they leave the operating room. Chen says they do this because to have a patient die in the operating room is to fail.
Chen also has problems with the bureaucratic structure of medicine. The procedures doctors learn from the time they dissect their first cadaver are so impersonal. The cadaver's face is shielded for 3 months. Doctors know nothing about the person and their life. And they are taught to dispassionately dispense treatment and advice. To cry with a patient, that would be unprofessional. Instead, procedures treat everyone the same dispassionate, and perhaps uncaring, manner. Pronouncements of death are impersonal, and rigid. Steps 1, 2, 3, and a person has died.
Chen also believes that medical bureaucracy itself gets in the way of treating patients with compassion. With many specialists and sub-specialists treating complex cases, the deliverance of "bad news," is put off because because "surely someone else will do it." Chen sees this as the height of unprofessionalism, but chastises herself doing the same thing and chastises her profession for treating it as acceptable. My own experience has been that the surgeon is in charge. Everybody expects the "boss" to deal with the unpleasant stuff. My surgeon is an excellent doctor, and she’s always honest and forthright when there’s "possible bad news."
Procedures may shield doctors from the raw emotion and fear that is present when surrounded by mortality.But there are no procedures for patients to follow. We suddenly find ourselves dropped in waiting rooms with other very ill, and perhaps dying, people. We don’t know what to say to each other. There are unwritten rules—patients never talk about death. Yet we don’t have, "step A, step B, and step C," to hide our natural emotions and fears. We have no procedures or methods—other than the standard poor choices of alcohol and drug addiction—for dealing with the natural guilt that comes out of survival. Why did I live, and the people in the waiting room—or in Chen’s book—die? The truth is that there is no answer to that. As I said yesterday, too much of life is random. And that randomness may actually be the ultimate answer to the question.
These are real issues that need to be talked about by both doctors and patients. Yet to talk about them would be to address our greatest fears: for doctors, people who have never failed a test, it would be to discuss failure. And for patients it would be to discuss the unknown. What if we merely cease to exist when we die? What if the soul dies with the body? If that is the case, then is living on a ventilator really better than dying? Is some life—even a miserable life—better than no life at all? To confront our own mortality is scary, but it should be done. And it’s why you should read Chen’s book.