Audio clip
Viston Taylor
Debilitated by radiation and chemotherapy, 84-year-old J.C. Clayborn couldn’t eat or walk last year.
“I got so weak that I just couldn’t go any further, and I told the doctor, ‘I just believe I’ll quit and go under hospice,’” said Mr. Clayborn, who has lung cancer.
For Mr. Clayborn, the decision to receive hospice care in his home was more an affirmation of life than a concession to disease.
“I feel good about living,” said Mr. Clayborn, who now is eating and walking with a walker. “You can’t lay down and let it take hold of you.”
Hospice care focuses on palliative care for the dying: easing physical, emotional and spiritual pain and offering support for the patient and loved ones, providers said.
Medicare, the federal health program for the elderly and disabled, implemented its hospice benefit in 1983, popularizing a service that had been mainly a private industry in America since its entry in the 1970s.
Public funding for hospice opened “a cultural conversation about the idea of a good death,” said Dr. Don Taylor, assistant professor of public policy at Duke University and co-author of a recent study on the cost-effectiveness of hospice. “I think culturally (in America), that’s a relatively new idea.”
Initially, hospice care was targeted primarily at cancer patients who had a limited time to live. However, hospice providers increasingly are serving more patients with Alzheimer’s disease and other forms of dementia. These patients, providers say, tend to live longer.
Hospice administrators and a number of studies show that hospice saves Medicare money in the final stages of life, though other studies challenge that premise.
An emerging issue in hospice is whether these lengths of stay are increasing costs slowly for providers, who are paid by Medicare.
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Staff Photo by Angela Lewis -- Wanda Cochran with Trinity Hospice talks with J.C. Clayborn during a visit to his apartment. Mr. Clayborn said his quality of life has improved vastly since he began using hospice care.
A small but growing number of hospices have exceeded the cap on reimbursements that Medicare set in 1982, according to the Medicare Payment Advisory Commission, the agency that advises Congress on Medicare issues. Medicare is asking those hospices to repay those funds that exceed the cap.
Commission members recently discussed whether the growing number of hospices exceeding reimbursement have to do with financial mismanagement in a limited pool of small hospices or whether the cap, which hasn’t been adjusted since 1982, has failed to account for the growing use of hospices for patients with noncancer diagnoses and longer lengths of stay.
The proportion of hospice users with cancer as their primary admission diagnosis declined from 75 percent in 1992 to just 43 percent in 2003, the Medicare Payment Advisory Commission said in a June 2006 report to Congress.
At Hospice of Chattanooga, about 80 percent of patients were cancer patients 15 years ago; now, the percentage is closer to 60 percent, according to Dr. Terry Melvin, medical director.
cultural shift
The proliferation of life-prolonging treatment options makes it hard for some patients and their loved ones to decide on hospice, said Rae Bond, executive director of the Chattanooga and Hamilton County Medical Society.
“Death used to be a natural part of living. It was perceived as that,” Mrs. Bond said. “I do think as medical care has improved so dramatically ... there’s a tendency for us to feel we should do absolutely everything we can possibly do” to treat a sick patient.
For many elderly patients, aggressive treatments can weaken and isolate them at the end of life, said Viston Taylor, president and CEO of Alexian Brothers Community Services and former executive director of Hospice of Chattanooga.
“Oftentimes at the end of life for the frail and elderly, hospitalization becomes the norm,” he said. But “the most appropriate end-of-life care is often not traditional health care as we think of it in terms of ... high-technology interventions and treatments.”
Families often are afraid to choose hospice because they think the decision signals giving up on life, said Janice Bigger, account executive with Adventa Hospice in Chattanooga.
However, “hospice is hope, and hospice is quality of life and living your life the very best you can for as long as you can,” she said.
After being diagnosed with liver cancer in late 2005, Ethel Clark, 65, began chemotherapy the following February. The therapies weakened her greatly, she said, and by June of 2006, her doctor recommended hospice care.
The service through Adventa Hospice lessened the load on her caregivers, her daughter and husband, who also struggles with a heart condition.
“I think it takes a toll on them, but they don’t let me know it,” she said.
COST EFFECTIVE?
Medicare currently spends about 25 percent of its budget on treating beneficiaries in their final year of life, according to a Health Affairs journal study. Hospice payments grew from $2.9 billion in 2000 to more than $8.1 billion in 2005.
The Medicare Payment Advisory Commission projects spending on hospice to grow on average 9 percent a year from 2004 to 2015.
Aging baby boomers will drive up heath care spending, and hospice may be an avenue to address cost concerns while improving the quality of life for those patients, Mrs. Bond said.
“One of the big issues we’re dancing around as a society is how do we pay for those costs?” she said. “I really think some of it comes back to we as consumers and individual citizens being better educated about ... what kind of quality of life do we want to have at the end of life?”
The cost-effectiveness of hospice care is debated. A recent report by Duke University researchers, including Dr. Taylor, states that hospice reduced Medicare spending during the last year of life by an average of $2,300 per beneficiary. However, other studies have shown that hospice care does not change costs for cancer patients and even increases costs in noncancer patients.
Dr. Melvin said hospice care in the home saves money, but the savings are debatable for patients in an institutionalized setting, such as a nursing home. She said that quality of care also is improved for many who choose hospice.
“There’s no question that it saves money, and people have been shown to live longer because of that extra supportive care,” she said.
Health care reporter Emily Bregel has worked at the Chattanooga Times Free Press since July 2006. She previously covered banking and wrote for the Life section. Emily, a native of Baltimore, Md., earned a bachelor’s degree in American Studies from Columbia University. She received a first-place award for feature writing from the East Tennessee Society of Professional Journalists’ Golden Press Card Contest for a 2009 article about a boy with a congenital heart defect. She ...
Hospice care was a wonderful blessing for my Mother, and me, who died at age 95. Adventa Hospice was in touch with me at least once a week and saw that Mother was taken care of physically and mentally. I can not thank them enough they were with me through the year and the ending of Mother's life. Although I was with Mother every night to feed her and to put her to bed, if I noticed any change, all I had to do was call Hospice. The nursing homes always seemed to be short of help, having lack of communication, or non qualified personnel. Hospice was also an encourgement to me as we cared for Mother.
Hello - I just read your article about end-of-life choices and hospice.
I wanted to let you know I am a documentary maker and hospice volunteer in Atlanta, Georgia. I've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.
It's called 203 Days. You can view it in its entirety at the following University of Connecticut website along with a study guide.
It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.
http://fitsweb.uchc.edu/Days/days.html
203 Days just won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).
If you'd like more information please go to my website http://bbarash.com/bb_203days.htm
I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.
Bailey Barash
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