Long journey home: A family’s experience with hospice care

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Louise Bittinger, 91, moved to Charlottesville from White Sulphur Springs, West Virginia, to be closer to her daughter, Shirley Thompson (center). Since Bittinger opted for hospice care last year, Hospice of the Piedmont's Rosemary Flynn (right) has become part of the family, visiting Bittinger's apartment three times a week to bathe her and check how she's doing. Photo: John Robinson Louise Bittinger, 91, moved to Charlottesville from White Sulphur Springs, West Virginia, to be closer to her daughter, Shirley Thompson (center). Since Bittinger opted for hospice care last year, Hospice of the Piedmont's Rosemary Flynn (right) has become part of the family, visiting Bittinger's apartment three times a week to bathe her and check how she's doing. Photo: John Robinson

When I asked Louise Bittinger how she wanted to die, her answer came quickly, in a voice choked for oxygen but still infused with a West Virginia drawl.

“Peaceful,” she said. “I saw my husband go peaceful. I saw my mother go peaceful. And my one desire would be to just go like they did.”

Bittinger, 91, was sitting in her living room in an apartment off of Hydraulic Road, flanked by two of her children, her grandson Joseph, and several members of the team from Hospice of the Piedmont who have been taking caring of her for a little over a year. She suffers from congestive heart failure, a chronic and progressive illness that was the leading cause of death for adults in the U.S. in 2011. After years of steadily declining health and too many operations, she took her doctor’s recommendation to look into hospice care last June.

“She probably talked about it for over a year and then as mom progressed along getting worse, we decided to contact hospice,” Shirley Thompson, her daughter and primary caretaker, said. “They came and sat at the table and talked to her, and she made her decision on her own after they told her how they operate. They told her if we weren’t happy at any time we could back out.”

Chronic heart disease and cancer are by far the top killers of American adults, and together with lung disease account for more than half of adult deaths each year, according to recent statistics from the Centers for Disease Control and Prevention. As the population continues to age, the money the government spends on health care is disproportionately focused on patients at the end of their lives.

A 2009 report on the cost of end-of-life care from the National Institutes of Health said: “30 percent of Medicare expenditures are attributable to the 5 percent of beneficiaries who die each year; about one third of the expenditures in the last year of life is spent in the last month. Previous studies have found that most of these costs result from life-sustaining care (e.g. ventilator use and resuscitation), with acute care during the final 30 days of life accounting for 78 percent of costs incurred during the final year of life.”

The number of hospice providers has doubled since the mid-’90s, and it has changed from an almost entirely nonprofit industry to one that’s majority for profit. According to statistics from the National Hospice and Palliative Care Organization, 44 percent of U.S. deaths occur under hospice care and about 84 percent of hospice recipients are on Medicare.

The way we take care of people as they approach death is becoming serious business economically, medically, and culturally. The Baby Boomers, the first consumer advocacy generation, are growing old and taking care of their dying parents. As they age, they will put tremendous pressure on the system from inside and out.

Obamacare and the creation of Accountable Care Organizations will have a lot to say about how the Medicare money that rules the end-of-life economy gets spent, but it’s the physicians and their patients who will have to have the tough conversations about dying.

Dr. Jim Avery, CEO of Hospice of the Piedmont, believes the economics are easy to figure out. Medicare gives hospice organizations like his $140 per day for patients, while the average stay in a hospital costs about $2,000 per day.

“A hospital really doesn’t want people coming in to fill up beds that don’t need intensive care,” he said. “They make money on technology, really. So it’s a win for the hospital, it’s a win for the health care system, and it’s a win for the patient and their family.”

The trouble is, while lots of people end up in hospice, they’re getting there too late. Almost 25 percent of the patients at Hospice of the Piedmont die during their first week of care. In October, the number was 40 percent.

It’s not the easiest argument to make in a day when references to government death squads and pulling the plug on grandma have become part of the political diatribe, but the fact is that more people should be choosing hospice care earlier.

Dr. Leslie Blackhall, director of UVA’s Palliative Care Research Center and a medical director for Hospice of the Piedmont, was asked to help develop the clinical teaching program for end-of-life care as UVA’s School of Medicine redesigned its curriculum. She was shocked to find that the existing curriculum couldn’t answer a basic question: When is a patient ‘dying’? Photo: John Robinson

Dr. Leslie Blackhall, director of UVA’s Palliative Care Research Center and a medical director for Hospice of the Piedmont, was asked to help develop the clinical teaching program for end of life care as UVA’s School of Medicine redesigned its curriculum.

She was astounded that the curriculum couldn’t answer a simple question: When is a patient dying? Is a patient with metastatic stage 4 cancer, the kind her mother had, dying when she is still going to the movies and having dinner out with friends? Or is she dying when she’s mostly bedridden but can still eat, visit with her family, and critique a sitcom? Or is she dying in her last few days, when she is fighting for every breath?

“If you use the term ‘dying’ to mean those three things, those are pretty different situations. In the first case, if they get pneumonia you definitely treat it. If they’re on their deathbed you might not even take their temperature,” said Blackhall. “It made me realize that we had no conversation in medical school about what happens when people die, what it looks like, what the stages are. And yet every human goes through it.”

Blackhall is helping a new generation of doctors make that distinction with more clarity, focusing and zooming in on the medical picture of the last stage of life.

Dr. Deborah Campbell, Bittinger’s doctor, has been practicing in Charlottesville since 1994. She did her residency at UVA and currently works at Albemarle Square Family Health Care and is affiliated with Martha Jefferson Hospital. Campbell “didn’t learn anything” about end of life care when she was in medical school, but she’s learned a lot about it dealing with her patients.

“This sounds not very medical, but I think a lot of it is intuition. [I bring it up] when I see that a patient is getting tired of really aggressive treatments and I know that they have a life-limiting illness,” she said. “Sometimes when I bring up the idea of hospice it can come as a relief for the patient.”

Avery believes that in today’s health care climate, the topic of hospice has become toxic enough that only the trust primary care doctors have can carry the appropriate message that hospice is the best way to save money, prolong life, and offer a peaceful death.

“It’s really obvious to people when they think this through. The problem is, I’m not sure the government can ever say it. I don’t think an HMO can say it. I think the physician has to say it,” said Avery.

And that’s going to take changing cultural attitudes, both inside and outside the medical community, about the way we look at death.

“I think there is an increased understanding that the way we care for people who have chronic and progressive illnesses is not very useful,” Blackhall said.