Coachella Valley seniors creating end-of-life plan
Survey: Almost one out of four older Americans had experienced excessive or unwanted health care
By: Victoria Pelham, The Desert Sun, August 25, 2014
Russ McDonald, 82, of Cathedral City filled out a 12-page advanced directive with end-of-life wishes for him and his wife more than a decade ago. It detailed which treatments he wanted in the case that he was dying, unconscious or clouded with dementia.
The document gave him peace of mind, but he found himself feeling uneasy again this year when he spoke with legal counsel at a valley hospital. He wanted to know if his documents would be accepted in a situation when medical staff were talking about pulling the plug. He was told, "Maybe."
Living in a community he calls "God’s waiting room," he believes in the importance of setting a solid plan in place and evangelizing about it to neighbors and friends. He has resolved the directive issue through a new online forum, discussing his issues with experts and scanning their answers into his medical records, but he thinks there should be more education on the subject.
"There should be more emphasis placed on end of life, death and dying," McDonald said.
A recent survey from Purple Strategies, sponsored by Compassion & Choices, found that almost one out of four older Americans had experienced "excessive or unwanted" health care, about 25 million people. Many supported measures to hold doctors accountable for not respecting their end-of-life wishes. Less than half of the seniors trusted that emergency rooms and intensive care units would honor them.
Valley health experts agree end-of-life care is improving locally but still has a ways to go.
"We’ve started the journey of palliative care," said Barbara Bigelow, a clinical nurse specialist at Eisenhower Medical Center. "The horse is out of the gate."
Bigelow is part of a collaborative team at Eisenhower that started offering palliative care to help patients and their families deal with the "emotionally overwhelming" dying process three years ago. With a doctor’s order, they are called in for discussions on goals of care, symptom management and hospice eligibility, aiming to offer emotional support and arm patients and families with facts to make the process easier. They take into account feelings, religious and cultural beliefs to come to a decision.
The team sees roughly 100 patients each year, with the numbers tripling since the program’s inception.
Dr. Rupinder Mann, one of the valley’s only board-certified palliative care doctors and the head of the Eisenhower program as well as a hospice worker, said that data bears out the impact of the program on its participants.
"With the palliative care program, since we have so much focus on overall wishes of the patient, what the program has done is it has ensured that whatever vision a patient has had for what should happen to them should they get too debilitated, we help honor those decisions," Mann said.
In the big picture, a palliative care approach can be a more judicious use of health care dollars, which experts said are seriously taxed at the end of life trying to prolong it.
"If we can make somebody better, if we can cure what ails them, if we can aggressively manage their symptoms, that’s wonderful, but we often reach a point where we cannot do that anymore and that’s where the suffering comes in," she said.
Mann said just 30 percent of patients have some type of advanced directive (which cover everything from dialysis to breathing machines), something that her team and others in the field are trying to change.
"We’re starting to realize you don’t bring in the palliative care team at end of life," Bigelow said. "These conversations should be happening at the beginning."
Mann said seniors receiving excessive and unwanted treatment – causing financial and emotional drain – is prevalent everywhere, and the valley is no different. She would like to also see more outpatient palliative care programs locally.
Desert Regional Medical Center in Palm Springs does not have an official palliative care program, spokesman Rich Ramhoff said, but he added that they would provide those services if that is needed during a patient’s stay at the hospital. JFK Memorial Hospital in Indio does not have an inpatient end-of-life care program, according to 2013 data from the California Office of Statewide Health Planning and Development.
Deborah Streletz, associate program director for UC Riverside Health at Desert Regional, is working on weaving palliative care into curriculum for the new UCR residency program.
She said most doctors want to respect patients’ end-of-life wishes, but it’s complicated by providers – especially in the emergency room – not being aware. Sometimes the patient is being treated by Emergency Medical Services, and no one is at home or has access to the living will or there is no order (such as do-not-resuscitate) in place.
"If a person does want intervention, it has to be done right then," Streletz said. "There’s not a lot of time to think about it like in a cardiac arrest situation."
Part of the problem, Streletz said, is also doctors being anxious and afraid of potential lawsuits if they do not take what some might see as "appropriate" medical action.
"Another part of it is a doctor’s or medical provider’s sense that our role is to save or resuscitate people, and the physician or medical provider has to be comfortable with also playing the role of providing the patient with a respectable death," Streletz said.
She said guiding patients through the dying process is also a doctor’s role.
"Sometimes that means doing less," she said.
Six out of ten older Americans in the recent survey supported paying doctors specifically for end-of-life consultations. Nearly two-thirds said they would support not paying health care providers who fail to honor their end-of-life wishes.
"(Incentives and sanctions) are absolutely a feasible option," Mann said. "We have to explore what are the best ways to implement it; overall, health care is going in that direction."
Streletz said she’s not sure how that would work. She said she doesn’t know any doctor who has intentionally not respected somebody’s wishes, but it’s a question of ambiguity. As a society and culture, we need to be more clear, uniform and consistent about documentation.
And in the big picture, there needs to be more discussions about the issue, long before a person is very sick, so people can end their lives in the way they lived it.
"Culturally we’re not good at it," she said. "We’re not comfortable with death as a part of life."
JFK Memorial Hospital in Indio does not have an inpatient end-of-life care program.
Desert Regional Medical Center in Palm Springs does not have an official palliative care program.
Survey: 6 out of 10 seniors supported paying doctors specifically for end-of-life consultations.