Don't ever come back: Barriers to palliative care

Dr. Bruce Ferrell, who helps lead the palliative care program at UCLA Medical Center, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this was as good as it's going to get."

Dr. Ferrell talked with the patient about whether he might want to leave the intensive care unit (ICU) to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

"We do not use the h-word [hospice] on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."

The patient chose to leave.

The UCLA Medical Center consistently ranks as one of the most expensive places in the U.S. to get end-of-life care, though its patients' outcomes are similar to hospitals that spend much less.

Advice to patients near the end of life: Even when in the hospital, you can insist on considering hospice care.

Read a story about hospice care. Thanks to Reed Abelson for the source story in today's New York Times.

Susan Sontag's choice for aggressive care

David Rieff's story on his mother, Susan Sontag
What my mother wanted – which was to undergo any treatment, no matter how terrible, that promised a cure for her disease – would probably have been viewed skeptically by a physician schooled in what Dr. Jerome Groopman calls the "bean counting" of evidence-based medicine. But doctors like Nimer and Groopman hold that their mission is to try to treat their patients as their patients want to be treated until doing so can be called with assurance (rather than in terms of probability alone) medically futile.

Obviously, there is a cost to this. In opting for treatment – in her case, a bone-marrow transplant – my mother suffered far more physically than she would have had she opted for palliative care alone. But in honoring her wishes, without for a moment understating the risks, her doctors opted for treating her in the full, human sense of the word.

Advice: Find a doctor who takes to heart your preferences about risks and benefits, and the degree of aggressiveness you want in your care.

Browse for related stories in the index at the very bottom of this page, or read another story from David’s book.

Thanks to David Rieff for the source story in Sunday's New York Times Magazine, drawn from his book, Swimming in a Sea of Death: A Son's Memoir.

I will remain forever grateful: Euthanasia and morphine

Dr. Darshak Sanghavi’s story

Afflicted with a rare, progressive scarring disease of the lungs, my father suddenly deteriorated one day and was hospitalized on a ventilator. Over weeks, my family endured repeated setbacks, as his lungs filled with fluid, his kidneys failed, and his heart weakened. His blood became acidic. Soon, fungus infected his bloodstream. His body ballooned, as if inflated with fluid. Doctors continuously infused intravenous narcotics, to deeply sedate him, and paralyzing agents to prevent any reflexive movements.

For my father, death would mean rest, or "shanti," in the Hindu-Jain tradition. For many people, death is not necessarily evil.

We met with my father’s doctors and agreed on a plan. On the day we decided to let my father die, our family filed into his room. Some prayers were said. The monitors were silenced. The doctors shut off the infusion of paralytic drugs, and injected a large dose of narcotics. The paralysis would still last for several hours. With a knowing nod to us, attending physician then left the room and my father’s nurse lingered behind.

She met my eyes and then my sister’s. Both physicians, we nodded back knowingly. Then the nurse reached over to the ventilator, and in an act of compassion for which I will remain forever grateful, she quietly turned the machine off.

Advice to families with gravely ill loved ones: Consider hospice care.

Read the source article by Dr. Darshak Sanghavi in the July 3 Boston Globe.