The word “hospice” usually evokes a shift, a pivot from trying to cure to providing comfort and support at the end of life. Hospice workers help people through the final weeks and months of terminal illness, easing dying people’s pain and fear, bolstering their exhausted families.
But in one case I heard about recently, the word served a different function: It became a kind of magic shield. Simply saying it could protect against unwanted medical treatments for a vulnerable old woman who possibly wasn’t dying at all.
Sarah Kyung Lee with her grandson, Wyatt Lee.
Dr. Sei Lee, a geriatrician and palliative care specialist at the University of California, San Francisco, who told me the story, described this use of hospice as “an amulet to ward off overly aggressive care.” He put that potent word to use a few weeks ago; the woman in question was his mother.
Sarah Kyung Lee, 76, lives in a small board-and-care home in Foster City, Calif. A tiny woman, she was out for a walk in March when she was grazed by an S.U.V. whose driver, backing up, evidently didn’t see her. “It was by all accounts, including the police report, a very low-velocity collision,” Dr. Lee said. It didn’t even dent her walker. “But it was enough that she fell and hit her head on the sidewalk.”
She was admitted to Stanford Hospital. At first, “I was hopeful she could go home in two or three days,” Dr. Lee said. Though E.R. doctors saw evidence of bleeding in the brain, subsequent scans showed it had stopped.
Hospitalizations rarely go so smoothly for older people with multiple health problems, however. Mrs. Lee had undergone two heart valve replacements and was on a blood thinner. She’d suffered two strokes and had high blood pressure. The stress of the accident kicked off an episode of recurrent atrial fibrillation, sending her heart rate to dangerous speeds. She developed delirium, as many hospitalized older people do.
Placed in a transitional care unit, “she had all these lines to monitor her heart, IVs in case they had to give her additional meds,” Dr. Lee recalled. Aides interrupted her sleep for blood tests before dawn. Fearful that she might fall if she tried to get up to use the bathroom, doctors inserted a urinary catheter.
Let me point out that if you’re a confused, hospitalized 76-year-old, the advocate you want at your bedside is Dr. Lee, author of numerous research articles on caring for frail, elderly patients. He had the expertise to know that atrial fibrillation could reverse itself. “We wanted to give my mother a chance to get better,” he explained. “In a week, there was a good chance she could snap out of this.” But he also knew how hospitals function.
His sister arrived from Oregon. “We were trying as best we could to minimize the interventions that would make our mother uncomfortable,” he said. What he wanted was “high-touch, low-tech care”: people to reorient her in Korean (Mrs. Lee spoke little English), to offer her favorite foods instead of bland mush, to let her sleep. University hospitals don’t tend to operate that way.
“I had to be hyper-vigilant,” he said, describing his conversations with every new doctor and nurse. He feared further procedures and medications. “It was exhausting feeling I had to be constantly on the lookout against the vast machinery of the hospital.”
So Dr. Lee summoned the power of the H-word and asked for hospice care. The palliative care team agreed that this patient had better than 50/50 odds of dying within six months, the prognosis required for enrollment. Yet, “I told the hospice doctors that my best guess was, she’d graduate from hospice,” Dr. Lee said. “These were all problems that with time could get better.”
Once he wielded the amulet, “the change was fairly instantaneous.” And well-timed: The next day, as his mother awaited discharge, nurses noticed flecks of blood when she vomited, which sometimes signals internal bleeding. The normal procedure would have involved a naso-gastric tube (something Dr. Lee had tried on himself as a medical student and found intensely uncomfortable), then sedation and insertion of a second tube through her esophagus, into her small intestine. “But they didn’t do it,” Dr. Lee explained, with relief, “because she was under the care of a hospice.”
Instead, he took his mother home. Over the next four weeks, Pathways Hospice sent nurses, social workers, aides and a chaplain to her residence. Because she wasn’t a typical hospice patient, the Lees still encountered policies that didn’t quite fit her needs; for example, she didn’t need pain medication. Nonetheless, Mrs. Lee recovered her mental clarity, ate and slept better, regained strength.
“Invoking hospice allowed me and my sister to relax and have some confidence that the care she was getting was what she needed,” Dr. Lee said. Mrs. Lee, who was indeed discharged from hospice last month, is doing well.
Each year, more than 15 percent of elderly patients leave hospice care, usually because their health has stabilized, according to a 2008 study; some will return as their decline resumes. Discharge can be nightmarish for a family that’s come to rely on hospice help, but those are the Medicare rules hospices must play by.
Caring for those expected to recover is not what hospices are designed to do, of course. And Dr. Lee’s gambit wouldn’t work for most of us; we lack his knowledge.
But it’s a cautionary tale, if we needed another, of how hospital policies can be at odds with the needs of frail elders. The way to ensure the most personalized, least invasive care for Mrs. Lee was to say, in effect, “We’re taking her home to die.”
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