Death Recedes into the Shadows
with the Rise of Modern Medicine
The goal of palliative care is to alleviate pain and suffering—not just physical pain, but also existential suffering—depression, anxieties, tremors, and other symptoms. Experts say over ninety percent of pain symptoms can be controlled. But the comfort care Luca received at Zen Hospice is not available to many dying Americans. And that’s the big question—why isn’t palliative care part of a routine standard of care for people near the end of life, like cough medicine is for the common cold? The answer to that question is complicated. It has to do with our deep, collective fear of death and the rise of modern medicine.
Remen said that the medical system’s attitudes toward death mirrors the society’s belief system about death and dying. The avoidance and fear of death is so pervasive, that Remen had difficulties conducting research on the end of life when she was a young doctor in the early 1970s. She remembers going to a major medical library, one of the outstanding libraries in the country. “I went through floors and floors of books, going downstairs, and then I went through aisles and aisles of books and journals and articles,” said Remen, “And I finally found the section on thanatology and it was about a quarter of a shelf. There were several copies of The Journal of Thanatology and the Bible. And that was the entire collection with respect to death.”
The SUPPORT Trials and the Emergence of Palliative Care
Keeping patients alive as long as possible became the routine standard of care. More is better—more tests, more invasive treatments, even for people near death. The assumption was all patients wanted this. But some doctors began questioning these assumptions. One of those doctors was Alfred Connors, a pulmonary and critical care physician at Case Western University School of Medicine. Dr. Jessica Nutik Zitter was a student of Dr. Connors and he told her about one of his dying patients in 1980 who didn’t want his life prolonged. The patient could not breathe on his own and had a tube inserted into his windpipe, attached to a ventilator. “After a couple of weeks, the guy started waking up and he wanted to get off the breathing machine,” said Zitter, “He’s like ‘Take me off!’ He didn’t want it. And Dr. Connors was shocked. He’s never seen this before. ‘What do you mean, take you off? You’re going to die.’ And the guy was insistent ‘I don’t want to live this way.’ ”
After much discussion with the patient’s family, the tube was removed. Sixteen hours later, he died peacefully. The patient’s demand for withdrawal of life-sustaining treatment led Dr. Connors to wonder how many other dying patients wanted this. In the mid 90s, Dr. Connors joined the SUPPORT research trial, funded by the Robert Wood Johnson Foundation. This ground-breaking study was aimed at improving care for seriously ill hospitalized patients. Of the ten thousand dying patients surveyed, nearly half reported experiencing unwanted pain and suffering. “He never expected the dismal results of the SUPPORT trial,” said Zitter, “They were so bad, people were dying so badly—people were suffering so badly before they died. The communication between doctors and families was so dismal and the incredible overuse of technology at the end of life was so profound that he said you could have heard a pin drop when they delivered the results to the Critical Care Society of Medicine.”
The results from the SUPPORT trial were a wake-up call for the medical system. But change did not happen immediately. In the 1990s, most doctors and nurses had little or no training in pain management and end-of-life care. The words “palliative care” were not part of the general medical lexicon.