Sam Sale knew his time had come. Hospitalized repeatedly since suffering a severe blood infection in November, the 93-year-old was done with all the poking and prodding.
His doctors at Cedars-Sinai Medical Center thought he might have suffered a minor stroke. The avid UCLA sports fan couldn’t go to his beloved football games anymore. He wanted to sleep all day. He didn’t want to eat anything — unless it was ice cream.
When his wife, June, took him to urgent care in mid-April to deal with yet another woe, he told her he didn’t want any more of it.
FOR THE RECORD:
Hospital guidelines: An article in the May 21 LATExtra section about a group of hospitals setting guidelines for how to tell patients about end of life care did not identify one of the hospitals involved. Huntington Hospital in Pasadena is also endorsing the recommendations.
“He said, ‘I’m tired of this. Let me go,’” she said. “So we did.”
Sam Sale died five days later, at home in Los Angeles, surrounded by his wife, children and grandchildren. His family buried him with UCLA pompoms attached to his casket.
“It was a peaceful death,” said June Sale, who is 90 and says she’d like to die at home as well. “I would hate to be in the hospital, with needles and tubes and whatnot, and lights shining on you. I’ve had friends who died that way.”
On Thursday, a coalition of Los Angeles-area healthcare providers — caring for millions of Angelenos among them — will endorse some groundbreaking guidelines designed to help patients like the Sales take more control over their final months, weeks and days. The hospitals will urge their doctors and nurses to help patients specify their hopes for the end of life through advance-care planning, and understand how to seek palliative care if a patient wants it.
The participants include Cedars-Sinai, HealthCare Partners Medical Group and Affiliated Physicians, Kaiser Permanente Southern California, Keck Medical Center of USC, Los Angeles County-USC Medical Center, MemorialCare Health System, Olive View-UCLA Medical Center, Providence Little Company of Mary Medical Center Torrance, Providence TrinityCare Hospice and the UCLA Health System.
The guidelines call on doctors to explain clearly to patients when a medical treatment under consideration — including interventions such as feeding tubes, intubation or dialysis — “may deprive the person of life closure (the ability to say ‘forgive me,’ ‘I love you’ or ‘goodbye’) or preclude a peaceful death.”
“We see a lot of harm at the end of life,” said endocrinologist Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai and a leader of the guideline effort. “We said, ‘We have to fix this.’”
Kate O’Malley, a researcher who studies end-of-life care at the California HealthCare Foundation in Oakland, said the broad-based effort was unlike any she had seen before in the state.
“To see these health systems own this is extremely exciting to me,” she said, calling end-of-life talks “one of the most important things in healthcare that never happens.”
A 2011 survey of California adults conducted by O’Malley’s organization found that nearly 80% of respondents said they definitely or probably would like to talk with a doctor about end-of-life wishes, but that only 7% had done so.
More than half said they had not communicated their end-of-life wishes to a surrogate who might make decisions on their behalf if they are unable to make decisions for themselves. Two-thirds said they wanted a natural death if they became severely ill; only 7% said they would want everything done to prolong life.
But what happens all too often, said James Leo, an intensive care specialist at MemorialCare Health System who worked on the guidelines, is that patients who haven’t expressed their plans arrive at the hospital already incapacitated.
An autopilot scenario unfolds, in which patients receive a level of care that they may never have wanted.
“With a patient who has not made clear their wishes, our default is to provide care to keep them alive,” Leo said. “That can sentence a patient to spending the rest of their days on machine support in the intensive care unit, not in a supportive environment where they can be with their families.”
But despite Californians’ professed interest in taking control over their end-of-life care, doctors and patients have found it hard to follow through with advance-care planning.
Patients sometimes bristle at the notion of discussing shifting to palliative care — a range of services that aim to improve the quality of life for people with chronic illnesses, whether death is imminent — because they mistakenly equate it with giving up on care altogether.
“What the doctor is saying is, ‘We don’t think you should get harmful care,’” Braunstein said. “The patient will not be abandoned.”
End-of-life care is famously expensive. The Dartmouth Atlas Project reported last year that spending during the last two years of life was about $112,000 per patient in Los Angeles.
As a result, some patients might fear doctors are steering them away from treatment as a means of cutting costs. Neil Wenger, director of the UCLA Healthcare Ethics Center and a collaborator on the guidelines, said that the question of costs was “a complicated issue,” but that it could “cut both ways.”
After discussing options during advance-care planning, some patients will still choose intensive end-of-life care, he said. Additionally, if ICU beds open up when patients choose palliative care in lieu of futile treatment it could increase capacity for equally expensive, but potentially more beneficial, care.
“We think there are people who are not getting transplants because there’s no availability of beds,” Wenger said. “This isn’t necessarily to save money. It’s to allocate resources more effectively.”
O’Malley, of the California HealthCare Foundation, said she thought the sheer number of institutions signing on to the new guidelines would give doctors some “cover.”
“This allows them to dispel any sense of mistrust,” she said. “When people ask, ‘Why are you talking to me about this?’ they can say, ‘Our whole community supports this.’”
But even when end-of-life conversations are accepted as standard practice and patients have a clear understanding of all their options, medical professionals still often resist, Wenger said.
Talking about death is difficult and takes time, he said. Doctors, who are experts in saving lives, can find it hard to shift gears and focus on comfort. Systems aren’t in place to make sure it happens.
Braunstein said the institutions’ public support of the guidelines could reinvigorate efforts to change that. At a conference Thursday at Cedars-Sinai, representatives from the institutions will detail what they each do to promote advance-care planning. The group will reconvene to report on its progress.
Clergy will also speak during the Thursday meeting, Braunstein said. He hopes religious leaders will return to their congregations and “demystify” end-of-life planning by explaining “that we’re trying to improve their end of life, not create death panels.”
June Sale, who describes herself as Jewish but secular, said a rabbi’s opinion wouldn’t make any difference to her. She has already signed her advance-care directive, which instructs her doctors not to resuscitate her if the end is near.
“It spells out: if you’re on the way out, don’t try to keep things going,” she said. “I have it notarized. There is no question about it.”