Families face difficult decision as hospice care grows
The Atlanta Journal-Constitution
ATLANTA — Daniel Franklin Lankford survived three tours of duty in the jungles of Vietnam. But the biggest enemy he’s facing now is cancer.
Lankford, 67, was diagnosed with lung cancer in 2010 and it has since metastasized. Chemotherapy made the great-grandfather very sick and the cancer was so advanced that doctors stopped treatments. He was in and out of the hospital 20 times. He couldn’t eat. He was in pain and dehydrated.
Earlier this year, his wife of 16 years, Betty, was told she would be a widow in three days.
The Lankfords decided then that when the time came, they didn’t want to say goodbye in a sterile hospital room. Instead, they opted for home hospice care, which is designed to provide support for patients facing the end of their lives as well as for their families. He receives visits at their Hampton residence from a registered nurse, a nursing aide, chaplain, social worker and a veteran liaison.
The number of patients in hospice care has more than doubled since 2000, from 700,000 to more than 1.6 million, according to the Virginia-based National Hospice and Palliative Care Organization. By definition, patients eligible for hospice care are generally in the final months — six months or less — of a life-limiting illness. But in some cases they survive longer.
Still, Dr. Richard W. Cohen, medical director of the WellStar Health System’s ethics program, said an ongoing problem is, “People don’t realize that part of hospice is having the discussion early.” The growth is due in part to an aging population. One in eight U.S. residents was 65 or older in 2009, according to the U.S. Department of Health and Human Services’ Administration on Aging. And that is expected to rise as more baby boomers reach their sunset years.
More importantly, though, hospice organization President J. Donald Schumacher said, is a greater acceptance of hospice care from the health care industry and the public. He estimates that the hospice industry is a $15 billion industry, and he expects it to continue to grow.
Already reflecting that growth, Miami-based Vitas Innovative Hospice Care, one of the nation’s largest providers, has an average daily census of about 250 patients in Georgia, up 62 percent from 2008.
There are now roughly 4,700 hospice providers in the nation, of which roughly 60 percent are for-profits. Schumacher projects that number to top 5,500 within a few years.
“Death is a painful and very difficult experience, but the medical community is finally realizing that hospice can make it more comfortable,” Shumacher said.
So are families.
Bringing up the “H-word” is one of the most difficult conversations that a family can have because it signals that the patient is approaching the end of life, said Dr. Dwana Bush, who runs a family medical practice in Sandy Springs, Ga., and is certified in hospice care.
At that point, they are “focusing on the quality of life and less on the length of life,” she said. “It’s really more care vs. cure. One vowel makes all the difference in the world for some people.”
Most hospice care is provided at home, while other patients and families decide on an inpatient facility that can provide more intensive care. Visiting nurses, assistants, chaplains and volunteers help with home care and also provide emotional and spiritual support for patients and families.
The idea of hospice care for dying patients has been around for decades. By most accounts, the first modern-day hospice was created in a suburb of London in the 1960s. The first one in the United States opened in 1974 in Connecticut. Today, most of the cost is covered by Medicare, Medicaid and private insurers.
In Georgia, the number of providers has risen to 190 from 165 in 2010.
Yet many eligible patients are not using hospice.
“When I started in hospice 10 years ago, only 30 percent used hospice,” a number that’s increased significantly, said Jennifer Hale, executive director of the Georgia Hospice and Palliative Care Organization. “That’s pretty good, but there are still a lot of people out there with misunderstandings and misinterpretations about hospice care.”
The rise in hospice care is really part of a cultural conversation taking place in the United States.
“Why don’t we talk about death or dying in our country?” Hale said. “You can’t combat dying. We’re all going to do it. No matter how great our technology is, no matter how great our medical care is, we still don’t have a cure for aging. Hospice is a big part of being able to allow patients and families to experience the dying process in a compassionate, comfortable and familiar setting.”
Still, the industry has drawn criticism.
Joshua E. Perry, an assistant professor of business law and ethics at Indiana University, is concerned that some patients enter hospice care prematurely.
“The downside (of hospice) is that death can be difficult to predict,” he said. “Physicians I’ve spoken to over the years say it takes a real skill to understand once a patient is on a certain death trajectory, a sensitive decision has to be made.”
He is also warily watching the growth of large for-profit hospice providers.
“I begin to get worried when the profit motive is injected,” he said. “Where people are particularly vulnerable at the end of life and where family members have compromised judgment related to the death process. I worry about a conflict of interest between the patient’s best interest and what’s in the best interests of shareholders and private investors.”
Weinstein Hospice, founded in 1999, is one of the few nonprofit hospice providers in the Atlanta metro area. Its patient load has grown from an average of 20 three years ago to more than 30 today, director Talya Bloom said.
“I think the word hospice for (families) has a really bad connotation,” she said. “They don’t realize that hospice is really about quality of life.” End-of-life care, if it’s not under hospice, is extremely costly because of the repeated hospitalization and expensive treatments, she said. “More and more hospitals are looking at the palliative care and hospice options as a way to provide the proper care for their patients,” Bloom said.
Palliative care can be used along with “disease-modifying treatments” and is focused on providing relief from pain, symptoms and stress of a major illness, according to the NHPCO.
Several years ago, Atlantan Charles Stigger had to make the hard choice to send his mother, Gertrude Walker Stigger, to an inpatient hospice facility. Stigger’s mother lived with him and his family until her health declined dramatically. When her physician recommended hospice, Stigger, an only child, was “floored.
“I don’t care how sick someone may be, you hope against hope that you will get a better result.” But caring for his mother at home was also stressful. At one point, his wife had to be hospitalized as well.
Hospice provided Stigger’s mother and the family emotional support, and he knew her final days in an inpatient hospice were as comfortable as possible.
“You do all you can for your relatives,” he said, “but sometimes, it’s just beyond your control.”
Betty Lankford takes comfort that her husband, Daniel Franklin Lankford, is able to remain at their at Hampton home.
One recent afternoon, she gazed at her sleeping spouse, who was curled on his side in a hospital bed set up in the living room.
“Sometimes he calls me over there and I’ll say, ‘I love you,’ and he’ll say, ‘I love you, too,’ and he’ll hold my hand,” she said. “Then he’ll say (to me), ‘Go back and rest.’”