In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
The night before brain surgery, I thought about death. I searched out my larger values, and I asked myself, if I was going to die, did I want to do it fighting and clawing or in peaceful surrender? What sort of character did I hope to show? Was I content with myself and what I had done with my life so far? I decided that I was essentially a good person, although I could have been better--but at the same time I understood that the cancer didn't care.I asked myself what I believed. I had never prayed a lot. I hoped hard, I wished hard, but I didn't pray. I had developed a certain distrust of organized religion growing up, but I felt I had the capacity to be a spiritual person, and to hold some fervent beliefs. Quite simply, I believed I had a responsibility to be a good person, and that meant fair, honest, hardworking, and honorable. If I did that, if I was good to my family, true to my friends, if I gave back to my community or to some cause, if I wasn't a liar, a cheat, or a thief, then I believed that should be enough. At the end of the day, if there was indeed some Body or presence standing there to judge me, I hoped I would be judged on whether I had lived a true life, not on whether I believed in a certain book, or whether I'd been baptized. If there was indeed a God at the end of my days, I hoped he didn't say, 'But you were never a Christian, so you're going the other way from heaven.' If so, I was going to reply, 'You know what? You're right. Fine.'I believed, too, in the doctors and the medicine and the surgeries--I believed in that. I believed in them. A person like Dr. Einhorn [his oncologist], that's someone to believe in, I thought, a person with the mind to develop an experimental treatment 20 years ago that now could save my life. I believed in the hard currency of his intelligence and his research.Beyond that, I had no idea where to draw the line between spiritual belief and science. But I knew this much: I believed in belief, for its own shining sake. To believe in the face of utter hopelessness, every article of evidence to the contrary, to ignore apparent catastrophe--what other choice was there? We do it every day, I realized. We are so much stronger than we imagine, and belief is one of the most valiant and long-lived human characteristics. To believe, when all along we humans know that nothing can cure the briefness of this life, that there is no remedy for our basic mortality, that is a form of bravery.To continue believing in yourself, believing in the doctors, believing in the treatment, believing in whatever I chose to believe in, that was the most important thing, I decided. It had to be.Without belief, we would be left with nothing but an overwhelming doom, every single day. And it will beat you. I didn't fully see, until the cancer, how we fight every day against the creeping negatives of the world, how we struggle daily against the slow lapping of cynicism. Dispiritedness and disappointment, these were the real perils of life, not some sudden illness or cataclysmic millennium doomsday. I knew now why people fear cancer: because it is a slow and inevitable death, it is the very definition of cynicism and loss of spirit.So, I believed.