By the time Dr. Michael Preodor brought up the do-not-resuscitate question, he could have predicted how Gloria Hayes would answer.
Hayes, 77, with advanced pancreatic cancer, had already made her no-nonsense views clear.
“Death is a certainty,” she had said. “There’s no sense in me fearing it. There’s nothing I can do about it.”
It was her sister, Lauren Caruso, with whom she lives, who sobbed.
“I can’t live there after you’re gone,” Caruso said, seizing another tissue. “I can’t go into your room.”
“Yes, you could go into my room,” Hayes said sternly. “What do you think, I’ll be there haunting you?” She put her hands to her head in imitation ghost mode, after which her sister began laughing and crying at the same time.
The conversation had stretched over two afternoons, involved the three members of the palliative care team of Advocate Lutheran General Hospital and three members of Hayes’ family and had touched on her understanding of her illness and wish to die at home in comfort before Preodor asked whether Hayes would want to be resuscitated if her heart stopped.
“So, we’re agreed that you want to do everything possible now for your comfort,” Preodor said.
Hayes nodded.
“If your condition progresses and you become weak and start to fail, there are several things that medical communities do that are not comfortable. One is CPR.”
Preodor then described cardio-pulmonary resuscitation in a way that sounded nothing like TV. A violent pounding on a fragile chest. A high probability of ending up on a ventilator in an intensive-care unit. No effect whatsoever on advanced pancreatic cancer.
“It is not recommended for people with cancer,” Preodor said. “My recommendation — but it is something for you to think about.”
But Hayes was shaking her head. “I think that’s good,” she said.
Her meaning was clear, but Preodor made certain.
“For it not to happen?” he said.
She nodded. Should her heart stop, she did not want CPR.
With that, she settled one question about end-of-life care.
Conversation like this, designed to let people decide what kind of treatment they want as they are dying and to ensure that their wishes are followed, turned into a lightning rod in the debate over health-care reform. Furor arose over a proposal that doctors be reimbursed by Medicare for talking with patients about these decisions.
The subject became embroiled with fears of death and so-called “death panels,” of health-care rationing and of frail people being denied care to save money. Lawmakers dropped the proposal rather than imperil health-care reform. President Barack Obama and congressional Democrats remain engaged in efforts to craft and enact legislation to overhaul the system.
But in Chicago, end-of-life care experts have launched a citywide effort to encourage such talks — and not just for terminally ill people, but as a routine element of good health care.
The Someone to Trust initiative, begun in 2006, has trained more than 150 facilitators to lead advance care planning conversations. The program runs pilot sites at major medical centers throughout the city and is collaborating with government and medical policy bodies including the Illinois Department of Public Health, the Illinois Attorney General, the Illinois State Medical Society and Metropolitan Chicago Health Care Council.
It is modeled on a program at Gundersen Lutheran Health System in LaCrosse, Wis., that has won national recognition for increasing the number of people with advance care directives and for saving money. Ninety percent of people who die in LaCrosse have a written plan for their care if they become incapacitated, compared with about 50 percent nationally. Medicare pays an average of $18,359 for medical care in the last two years of patients’ lives in LaCrosse, compared with a national average of $25,860.
But the purpose of the program was not to save money, said its founder, Bud Hammes, director of medical humanities at Gundersen Lutheran Medical Foundation; it was to make sure that doctors and families knew how people wanted to die. It ended up saving money because most people, when asked, do not choose aggressive treatment if they are dying.
“Americans do not want to die hooked up to machines,” he said. “People are generally older, quite ill and have had years of chronic illness. As they get into those final months they say, ‘You know what, I think I’ve had enough here.’ And it’s not because they’re trying to save money. They’re just trying not to suffer anymore.”
Karen Nisley Long, program director of Someone to Trust, was dismayed to see advance care planning become the focus of fear.
“This is a good thing,” she said. “If you don’t say anything, someone is going to make the decisions for you, and it could be a stranger.”
Most people welcome such conversations, said Dr. Linda Emanuel, director of the Buehler Center on Aging, Health & Society at Northwestern University’s Feinberg School of Medicine. A study she conducted in 1991 found that 89 percent of people wanted advance directives.
Some opposition arose from fears that doctors would discourage patients from seeking aggressive care. But doctors who hold these talks say they respect patients’ wishes.
Preodor, who in addition to his role on the Lutheran General palliative care team is a physician with Rainbow Hospice and a board member of Someone to Trust, said that even if a terminally ill patient ignores his strong advice not to be resuscitated, “I would say, “That’s a bad decision, but you absolutely have the right to make it.'”
Sometimes doctors recommend that people pursue more treatment. Dr. Kathy Johnson Neely, chairman of the medical ethics committee at Northwestern Memorial Hospital, recently urged a healthy 80-year-old man who had consulted her at a public lecture to reconsider his request for a do-not-resuscitate-order (DNR).
“I said, ‘Really? What if you got hit by a bus? What if you got pneumonia and we could treat you in the hospital for a day and you would be fine?'” Neely said.
He changed his mind.
The Someone to Trust initiative faces significant challenges, Long said, in replicating the program in LaCrosse, which has a population of a little more than 51,000. Chicago is a much larger and more diverse community with far more medical institutions. For now, the initiative is focusing on training, which participants say is needed.
“Quite honestly, a lot of physicians are also uncomfortable sitting down with patients and having these conversations,” said Dr. David Fisher, a geriatrician with Advocate Medical Group who serves on a Someone to Trust task force.
An untrained doctor can broach the subject poorly. Hayes knows that well. Just hours before her scheduled conversation with the palliative care team, a resident physician she did not know showed up in her room.
“He came in and said he had these questions about CPR and he was going to ask them and it was for my own good,” she recalled, still angry. “I told him if it was for my own good he wouldn’t be in there aggravating the sh– out of me when I didn’t feel well. I threw him out and told him I never wanted to see him again. And then I reported him.”
She sat in her hospital bed surrounded by the palliative care team and her relatives as the meeting drew to a close. Clinical ethicist Clint Moore III leaned forward.
“What have we missed?” he said. “Have we had every question answered?”
There was still the matter of the two Yorkie dogs that Hayes’ sister worried would bark at in-home caregivers. “I think that can be figured out,” Moore said. “Agencies have dealt with that before.”
Hayes thanked the palliative care team, shook Preodor’s hand and was ready to follow her chosen plan: To stop taking all but comfort-care medications, have her pain controlled and go home.
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Uncomfortable talks, well in advance
End-of-life care conversations help people decide what kind of care they want if they are incapacitated or facing death. To make sure their wishes are followed, people can sign advance directives giving specific instructions. The most important of these, say experts, is a durable power of attorney for health care, in which people name someone they trust to make decisions for them if they can’t do so themselves.
Individuals can be guided through their choices by talking with doctors, social workers or chaplains. When a person is facing a life-limiting illness, the conversation should delve deep, said Dr. Catherine Deamant, director of palliative care services at Cook County Health & Hospitals System.
“The conversation is really about that person’s understanding and experience with their illness,” she said. “What have they been facing? What are they hoping for? What do they value? What do they worry about? What gives their life meaning? Who helps support them with what they’re facing?”
People should have such talks periodically throughout their lives, say advance care advocates, and everyone over 18 should have a power of attorney for health care.
— Barbara Brotman
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bbrotman@tribune.com
More inside
Comparing the health-care reform plans. PAGE 4
