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.

She signaled by blinking her eyes and nodding: An endurance athlete at the end of life

Barbara Warren, a champion endurance athlete in the over-60 age group, died in Santa Barbara, California on Tuesday, three days after crashing during the cycling portion of the Santa Barbara Triathlon.

She had broken her neck in the fall and was paralyzed from the neck down, breathing with a ventilator, when she signaled, by blinking her eyes and nodding, that she wanted the ventilator turned off.

"She wanted to leave," said her sister. "No athlete would like to have a life with only their eyes talking."

Barbara had competed 13 times in the Ironman Triathlon World Championship in Hawaii, winning it at the age of 60. The triathlon consists of a 2.4 mile ocean swim, a 112-mile bike ride, and a 26.2 mile marathon.

Advice to family members with gravely ill relatives: Honor the wishes of family members about the end of life.

Read another end of life story.

Thanks to Bruce Weber for the source story in today's New York Times.

His family was hopeful he would fully recover: Enterobacter Aerogenes infection

On September 2, 2006, 27 year old Josh Nahum was injured in a skydiving accident near Boulder, Colorado. He had broken his femur and fractured his skull and was admitted to the Intensive Care Unit (ICU). His family was hopeful that, even though the doctors believed Josh would have a long road ahead, he would, with rehabilitation, fully recover within a year or two.

During his recovery in ICU he suddenly developed a bacterial infection - Staph. His neurosurgeon prescribed Vancomycin which cleared it up. As the weeks went by, Josh began to get better, even taking brief walks with the help of his walker and his Physical Therapist, Brian.

After 6 weeks or so in ICU, he was transferred to a nearby Rehab facility until he suddenly developed a 103-degree fever and was sent back to ICU. Tests reported that Josh had yet another bacteria named "Enterobacter Aerogenes." 

On Monday, October 9th Josh coded and stopped breathing, becoming comatose with no respiratory effort whatsoever. The Emergency Room was called and he was put on a ventilator. An excessive pressure buildup on his brain due to the bacterial infection caused a portion of his brain to be pushed into his spinal cord, permanently interrupting his ability to breathe on his own as well as his ability to move his head, arms or legs ever again. 

In a matter of moments, Josh had become a ventilator dependent quadriplegic. Less than two weeks later, he died, not from his original injuries, but from complications arising from virulent bacteria he caught in ICU.

Advice: Help strangers protect themselves against medical errors by telling your stories widely, as Josh's mother, Victoria Nahum, has been doing.

Read another young athlete’s hospital infection story.

Thanks to Victoria Nahum for the source story in hospitalacquiredinfections.blogspot.com and to Adam Gee and Elizabeth Cohen.