“They wanted to put a catheter in her, do this other stuff to her,” her mother, Dawn, told me. “I said, ‘No. You aren’t going to do anything to her.’ I didn’t care if she wet her bed. They wanted to do lab tests, blood pressure measurements, finger sticks. I was very uninterested in their bookkeeping. I went over to see the head nurse and told them to stop.”
In the previous three months, almost nothing we’d done to Sara—none of the scans or tests or radiation or extra rounds of chemotherapy—had likely achieved anything except to make her worse. She may well have lived longer without any of it. At least she was spared at the very end.
That day, Sara fell into unconsciousness as her body continued to fail. Through the next night, Rich recalled, “there was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”
Her father and her sister still thought that she might rally. But when the others had stepped out of the room, Rich knelt down weeping beside Sara and whispered in her ear. “It’s okay to let go,” he said. “You don’t have to fight anymore. I will see you soon.”
Later that morning, her breathing changed, slowing. Rich said, “Sara just kind of startled. She let a long breath out. Then she just stopped.”
7 ? Hard Conversations
Traveling abroad sometime afterward, I fell into a conversation with two doctors from Uganda and a writer from South Africa. I told them about Sara’s case and asked what they thought should have been done for her. To their eyes, the choices we offered her seemed extravagant. Most people with terminal illness in their countries would never have come to the hospital, they said. Those who did would neither expect nor tolerate the extremes of multiple chemotherapy regimens, last-ditch surgical procedures, experimental therapies—when the problem’s ultimate outcome was so dismally clear. And the health system wouldn’t have the money for it.
But then they couldn’t help but talk about their own experiences, and their tales sounded familiar: a grandparent put on life support against his wishes, a relative with incurable liver cancer who died in the hospital on an experimental treatment, a brother-in-law with a terminal brain tumor who nonetheless endured endless cycles of chemotherapy that had no effect except to cut him down further and further. “Each round was more horrible than the last,” the South African writer told me. “I saw the medicine eat his flesh. The children are still traumatized. He could never let go.”
Their countries were changing. Five of the ten fastest-growing economies in the world are in Africa. By 2030, one-half to two-thirds of the global population will be middle class. Vast numbers of people are becoming able to afford consumer goods like televisions and cars—and health care. Surveys in some African cities are finding, for example, that half of the elderly over eighty years old now die in the hospital and even higher percentages of those less than eighty years old do. These are numbers that actually exceed those in most developed countries today. Versions of Sara’s story are becoming global. As incomes rise, private sector health care is increasing rapidly, usually paid for in cash. Doctors everywhere become all too ready to offer false hopes, leading families to empty bank accounts, sell their seed crops, and take money from their children’s education for futile treatments. Yet at the same time, hospice programs are appearing everywhere from Kampala to Kinshasa, Lagos to Lesotho, not to mention Mumbai to Manila.
Scholars have posited three stages of medical development that countries go through, paralleling their economic development. In the first stage, when a country is in extreme poverty, most deaths occur in the home because people don’t have access to professional diagnosis and treatment. In the second stage, when a country’s economy develops and its people transition to higher income levels, the greater resources make medical capabilities more widely available. People turn to health care systems when they are ill. At the end of life, they often die in the hospital instead of the home. In the third stage, as a country’s income climbs to the highest levels, people have the means to become concerned about the quality of their lives, even in sickness, and deaths at home actually rise again.