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.

  • MB

    An incredibly thoughtful piece on a topic many individuals are scared to address.

  • http://www.facebook.com/profile.php?id=740991345 Jennifer Marley

    Great, thorough, personal piece on a very timely topic. Thank you.

  • akux

    How blessed we are to have an organization like Hospice of the Piedmont in our community, and thank you Giles for raising our collective awareness on this important topic. Let’s ban the “elephants with the doilies” within our families and have honest, loving, and yes, hopeful conversations about death and dying.

  • Sherry Dickens

    Living so far away, I can only get down to see my Nanie every two weeks, I can’t thank Hospice of the Piedmont’s enough for all they do and a special thank you goes out to Rosemary, her dedication and caring, she seems to carry in abundance.

  • Debbie Wilson

    Being an RN in the Home Health and ER fields I have encountered Hospice on numerous occasions and it has always been a positive experience. I’m also a granddaughter of Mrs. Bittinger and just seeing Rosemary interact with the whole family is a blessing beyond words. I just want to say “THANK YOU” to all of Nannies Hospice workers for all you do!!!!!

  • Kim Connolly

    My mother passed away last March – at home and in peace, thanks to a hospice program in another state. This article points out the need for families to have honest conversations about the natural progression from life to death. My mother was decisive about the path she wanted to take upon receiving a diagnosis a year ago of Stage IV lung cancer (nonsmoker) at the age of 82 – after successfully defeating two other types of cancer in her lifetime. And she had been very clear in making her thoughts about death and dying known to her family for years – she made sure we knew where her living will, her will, and her power of attorney papers resided. That is a gift I am very grateful for, as my sister and I were at peace about following her wishes to die well. Having worked years ago for a home care agency with a hospice component, I saw time and again families putting off the inevitable and not contacting hospice until the last week or so of a loved one’s life, when they could have had all the support, resources and palliative care several months sooner. Hospice is just as much for the families as for the patients. We and the medical profession need to get past the urge to continue to treat patients when instead we should be having heart to heart talks with them about life and death. If my mom were younger, she would have fought this cancer as well, but she was too pragmatic, and at the age of 82, having been busy and vibrant up until the diagnosis, she simply said, “I’ve had a good life and I’m not going to stretch it out by a few miserable months of chemo and radiation.” I was very proud of her for taking that path and grateful to Hospice for making it pain free and comfortable.

  • gail grondahl

    Louise Bittinger is my mother in law. She has been BLESSED with 6 daughters and two sons who love her very much. Her family has been incredible with the amount of support they have provided their mother, never complaining but happy to be of service. This attests to a wonderful mother who is not forgotten in her time of need. Gail Grondahl Bothell Wa

  • rusureuwant2know

    If you have a loved one who can feed themselves, but not much else, check their hands/nails. Is staff washing their hands after a meal? I’m not talking about a swipe with a napkin, I mean thoroughly washing their hands. Is there food on their fingertips and under their nails? How about around their mouths? Is their hair clean? Make sure they’re getting their basic hygiene needs met.

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