On the edge

Doug Harriman had a pretty good summer, considering that he was dying of pancreatic cancer. "I'm shakin' and movin'," the 46-year-old explosives engineer and Strasburg resident often said. He went camping with his family almost every weekend, including a 10-day trip to Virginia Beach, and even flew to Texas to visit his son's newborn baby, Braxton. His family joked about his "bucket list," but the only thing that seemed to be on it was camping and a daily Slurpee.

The pain was occasionally overwhelming, but until a few weeks before his death at home last fall he managed remarkably well. This was largely because of the morphine pump and other programs provided by the Winchester-based Blue Ridge Hospice. The non-profit offers bereavement counseling, palliative treatment programs, chaplaincy services, music therapy, regular nurse visits, and other services.

But in some rural areas of Virginia, patients like Harriman may not have easy access to hospice care for much longer. Hospice organizations in Virginia and across the country are under considerable pressure because of uncertain funding and new federal rules that came into effect Jan. 1.

'The most challenging time I've ever seen'

"Because of federal regulations and fiscal constraints we're operating under," said Brenda Clarkson, Executive Director of the Virginia Association of Hospices & Palliative Care, "some smaller hospices may be forced to go out of business."

Last year's federal healthcare reform law requires patients to have an in-person examination by a physician or nurse practitioner after 180 days in hospice and then every 60 days after that, Clarkson said. The new regulations provide no additional Medicare reimbursement for travel expenses or staff time.

This change comes just as charitable giving is down (most hospices are non-profit), aging Baby Boomers are needing more medical services, and federal health bureaucrats are considering serious cuts to Medicare provider payments.

About 22,000 people in Virginia received Medicare-funded hospice care last year. "Hospices will survive," she said, "but this could well be the most challenging time I've ever seen."

Refusing to let go

The Blue Ridge Hospice serves five counties in the state's northwestern corner; as a large operation it's unlikely to shut down. But its wide service area means that doctors and nurses sometimes drive over an hour to complete an in-home exam or visit. Three physicians, a staff of nurses, and 500 volunteers handle well over 1,000 patients per year. If demand keeps growing, said Blue Ridge's Dr. Jack Wright, the hospice simply won't be able to keep up.

Blue Ridge typically has over 200 patients at a time, but relatively few come to the eight-bed residence; the rest are usually in their homes. The average length of care is two weeks, but some are in hospice for months or even years.

Rarely does a hospice patient die in "distress," Wright said. The two major advances in palliative care in recent years are a greater willingness to use narcotics at very high levels and an emphasis on working with families to address the patient's physical, emotional, and spiritual needs. "Not all pain is physical," Wright pointed out.

People often say they wish they'd sought the hospice's services sooner. "A lot of the elderly are over-treated," he said. This is the result partly of a medical culture that focuses on treatment, partly doctors practicing defensive medicine to avoid lawsuits, and partly family pressure.

Often, he said, families refuse to let go, and sky-high expectations come from an intense faith in medical science. Sometimes only so much can be done, he said, "but no one wants to hear that." Hospice care can be a relief for patients who have had enough of treatment.

When Medicare was created in the 1960s, Wright added, "they picked 65 [as the age of eligibility] for a reason. People died [on average] at 68. They said, 'We can do this for three years.'"

Since then, however, life expectancy has been extended to about 75 years. But the discussion about end-of-life ethics just hasn't kept up, he said, and now public debate about end-of-life issues is shaped by budget crunches in state and federal governments. A quarter of all Medicare expenses go toward the five percent of people in their final year of life, and most of that in their last few months.

As Dr. Atul Gawande observed in the Aug. 2 issue of the New Yorker: "The soaring cost of health care is the greatest threat to the country's long-term solvency, and the terminally ill account for a lot of it. . . . Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop."

"If we're not doing all these futile treatments, then I think people will be allowed to die as human beings and not as patients," said the VAHPC's Clarkson. "It's a strange world we live in when people have to die with a medical code attached."

Able to Die at Home

Doug Harriman wanted to die at home. If you try to hang on until the bitter end, Faith Harriman said, you spend the final days in a sterile room with "all this stuff going on, people coming in and out all at the last minute, and then, for lack of a better word-Boom! He's dead."

By Sept. 5 Doug was failing rapidly. He'd been spending most of his time in an easy chair in his TV room, its walls covered with family photos. The hospice staff helped arrange for a rental hospital bed to be delivered to their living room. He had what doctors warned would be "terminal agitation" and a normal bed wasn't strong enough. "I'm just so restless," he told Faith. "I just can't settle down."

On Tuesday, Sept. 7, nurses sedated him into unconsciousness. On Sept. 9 at 5:55 p.m., he passed away. Faith and his son Dustin were there; his daughter Heather and other members of the family were nearby. It was a hard time, Faith said, but "he was at peace about what was happening to him because of his relationship with Christ."