Service gap: Hospice providers say stigmas keep them from helping patients earlier

FARGO - When Donovon Nelson’s back problems started causing him to fall down, his wife, Mary, knew where he could get help.
She recommended Hospice of the Red River Valley, which eased her mother’s last weeks of life. Hospice staff members started visiting the Nelsons and did the same for Donovon, allowing him to stay out of the hospital or a nursing home.
Mary still remembers the names of the nurse and assistant who helped take care of him.
“He wanted to stay home, and that’s what we did. He died in his own bed,” she said.
Hospice care is a growing movement, but it’s not as widely used as it could be in North Dakota.
Officials at hospice facilities across the state say they’re often serving patients in the last weeks or days of their lives - even though Medicare and other insurance providers cover the service for much longer.
Stigmas and misconceptions about hospice care, and the reluctance of some doctors to bring it up make it hard for hospice providers to connect with potential patients.
And since none of the dozen providers registered with the state operate large-scale dedicated hospice houses, accessing resources in some rural areas of North Dakota can range from difficult to impossible.
The problem has drawn national attention. A May report on state-by-state senior health from the United Health Foundation ranked North Dakota 46th in the percentage of its seniors who used hospice services in the last six months of their lives in 2010.
“People don’t realize that we can improve (their) quality of life,” said Terri Nelson, hospice supervisor at Trinity Hospitals Hospice in Minot. “Everybody says, ‘Boy, I wish we would have done that sooner.’”
Humble beginnings
The U.S. hospice care movement began in the 1970s. Designed for the terminally ill with little time left, hospices provide emotional support and ease their clients’ end-of-life suffering.
The industry has swelled since its modest beginnings. More than 1.2 million Medicare beneficiaries used hospice services in 2011, according to a report to Congress from the Medicare Payment Advisory Commission.
Medicare alone spent almost $14 billion on hospice care in 2011.
The growth in North Dakota has been more modest. A state directory lists 12 facilities in the state, out of more than 5,500 hospice programs across the country.
And while recent news investigations have revealed for-profit hospices that played the insurance system to maximize profits, all of the hospices in North Dakota are nonprofits. Virtually all of them struggle to make ends meet, said Karen Bercier, president of the North Dakota Hospice Organization.
Some of those North Dakota hospices have served patients for decades. They provide holistic care ranging from regular nursing visits to bereavement counseling for families after the patient has died.
“In many cases, you almost become a part of their family,” said Tamie Gerntholz, hospice and home health manager at Jamestown Regional Medical Center.
Mary Nelson’s mother, Evelyn Herrick, spent six months on hospice and actually left the service for a time because her condition improved. Nelson’s late husband was on hospice for about six months.
But most patients don’t spend nearly that much time in hospice care, even though most insurance providers will cover the cost.
The median length of service for U.S. hospice patients in 2012 was just shy of 19 days, according to the National Hospice and Palliative Care Organization.
Some North Dakota hospices reported median stay lengths even shorter than that. So far this year, the median stay length at St. Alexius Home Care and Hospice in Bismarck is about nine days.
Hospice of the Red River Valley in Fargo reports that almost 30 percent of patients last year used the service for seven days or less.
It’s difficult for hospice workers and volunteers to build relationships with patients over just a few weeks. Brief patient stays deprive hospice staff of information, making it harder for them to monitor patients and manage their symptoms, Bercier said.
It also means less funding for hospice providers because insurance programs compensate providers for each day a patient remains on hospice.
Clipped funding can be a problem for North Dakota hospices, which often need donations and volunteers to make ends meet.
Why wait?
Many North Dakota hospice officials point to stigmas about the practice as the main reason patients come in much later than they could.
Patients and families often think hospice care means a quicker death, even though research shows it typically prolongs patients’ lives by almost a month, Terri Nelson said.
People also mistakenly assume hospice care is only for cancer patients.
Most hospice providers do some sort of community outreach to clear up misconceptions about the profession and try to reach patients who might benefit from it.
But people often don’t want to think about hospice care because it’s associated with death, said Tammy Theurer, director of the hospice and home care program at St. Alexius.
It usually takes a personal experience with the service to change someone’s mind. Terri Nelson said most of the volunteers at her hospice only started working there after someone they knew entered hospice and they learned more about it.
Misconceptions are only part of the problem. To begin hospice care, a patient needs a diagnosis of six months or less to live.
While some hospice patients improve and are discharged, death is the more common conclusion.
Doctors may be reluctant to recommend hospice care or even bring it up with families. It may seem like surrender, said Dr. Eric Johnson, medical director of Valley Memorial Homes in Grand Forks.
Johnson, who works with nursing home residents there, said he frequently recommends hospice care for his patients.
Doctors who don’t always work with elderly patients or those with terminal diseases may not feel comfortable bringing up hospice care as an option, he said.
“Some patients and families say hospice is synonymous with giving up, and that’s not true,” said Dr. Ralph Levitt, an oncologist who also teaches at the University of North Dakota. “It’s a godsend for a lot of families.”
Rural ND problems
Providing hospice care is especially tricky in a rural state like North Dakota.
Hospices typically visit patients located within a certain number of miles from the facility or office. Since there are so few providers in North Dakota, it’s essentially impossible to get care in some parts of the state, particularly in the northwest.
Some hospice providers station nurses in outlying communities to combat the problem. But no one serves cities like Stanley and New Town, Bercier said, even though they’re each less than an hour and a half’s drive from Minot.
The Trinity Hospitals Hospice in Minot has a condominium where far-off patients can stay and receive care, said hospice and home health care director Liz Johnson.
But hospice is ultimately designed to care for patients in their homes, and that’s not possible everywhere in North Dakota.
Where it is possible, it can also be expensive for providers. Nurses, chaplains, medical directors and other hospice staff sometimes have to travel miles to reach a single patient.
For example, Dr. Tricia Langlois, medical director at Hospice of the Red River Valley, said she might spend most of a day traveling to and from a town like Ellendale, a southeastern North Dakota city right on the edge of the hospice’s service area, to see a single patient.
Medicare reimburses hospices at a flat rate for each patient - usually about $156 per day this year - regardless of how far staff members have to travel.
That makes hospice care in rural areas and states like North Dakota more expensive in a field where margins are sometimes already razor-thin. Hospices here rely heavily on volunteers and donations to stay afloat.
Changing conversation
Mary Nelson said she’s a “firm believer” in hospice care and said brings it up with people she thinks it could help.
“Their first reaction is, ‘Oh, no. No. I’m not going to die,’ ” she said. “Well, we all are.”
A big part of Roxanne Smedsrud’s job is educating the community about hospice care. As a clinical education specialist at Hospice of the Red River Valley, she travels to community churches, assisted-living facilities and nursing homes to spread the word.
“We’re really trying to get out there and help people see it’s a benefit they have coming to them,” Smedsrud said. “That’s the hard part, is that this is sitting there waiting to be used … people don’t know about it.”
Smedsrud said she thinks some are beginning to come around to the idea of hospice care.
Mary Nelson is already sold. She said she had a wonderful experience with the Red River Valley hospice.
“If I ever need it, I know they’ll be there for me,” she said. “Knock on wood, it won’t be for a while.”