Hospice: Compassionate aid instead of medical procedures

Parkinson's disease and a stroke have taken their toll on Jerry Heath.

Parkinson's, an incurable neurological disease that causes tremors, has affected the 74-year-old man's ability to walk and talk. A stroke on top of that has affected other functions, including his ability to swallow.

"Food would go down pretty good, but water would immediately go where it was not supposed to . . . into the lungs," said Theresa Heath, his wife of 58 years and primary caregiver.

"He kept getting pneumonia. After that, the doctors and nurses at the hospital really suggested that we use hospice," she said.

Hospice is a program of care that provides medical services and services focused on making terminally ill patients comfortable as they near the end of life -- sometimes in an inpatient setting, but more often in a patient's home.

Instead of costly and invasive medical procedures directed at trying to cure patients, palliative care is provided to manage pain and symptoms. Spiritual and bereavement counseling and case management are provided to help patients and their families cope with the prospect of death.

"The first thing they provide us with is a warm greeting," said Theresa Heath, who turned to hospice as her husband's condition became uncertain. The Heaths are former Richmond residents who moved to Prince George County just outside of Petersburg years ago to be closer to their jobs at a telephone company, where both worked and retired.

"We don't get out a lot," said Theresa Heath. "A nurse comes once a week, or more if needed. Then we have an aide who comes in twice a week. Anytime we feel like we need more we will sit down and talk to them. They have a minister who comes about once a month."

The hospice concept has been around for decades, started as a way to serve terminally ill patients, often those with cancer, and their families. Congress created a hospice benefit in the Medicare program in 1982. In 2008, more than 1 million Medicare beneficiaries used hospice care--more than double the number of a decade ago.

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End-of-life care in this country, however, is primarily still hospital-focused. There, the goal is to save lives. Invasive tests, drugs and procedures are routine -- whether or not they will alter the outcome.

"It's a reluctance to talk about death and dying even when it's fairly obvious what is going to happen," said Dr. Thomas J. Smith, Massey endowed professor for palliative care research at Virginia Commonwealth University.

Recent studies, Smith said, suggest that only 30 percent to 40 percent of doctors discuss end of life with dying patients.

"It's very uncomfortable to look another human being in the eye and say 'There is nothing more we can do to make you live longer,'" Smith said. But "that should be followed with, 'There are things that we can do to make every day that you have left be a decent one. We can concentrate on keeping your dignity. We can concentrate on making you pain free. We can help you with spiritual concerns, family and life concerns.' But many doctors really don't have the skills to make that transition."

Smith helped create the Virginia Initiative for Palliative Care, which provides training to doctors and nurses on palliative care and end-of-life care issues.

Hospice gives families and patients more control. In Jerry Heath's case, there has been less cycling in and out of the hospital.

"You don't have to make doctor's visits. They keep in touch with the doctor for you," said Theresa Heath. It saves you a lot of pulling and tugging of getting him back and forth. It saves a lot of wear and tear for him and for us."

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Medicare expenditures on hospice care have grown exponentially over the past decade, reaching $11.2 billion in 2008 with care provided to more than 1 million people.

As hospice has grown, so has the range of diagnoses of patients using it. Cancer used to be the most common illness for Medicare hospice patients. In 2008, non-Alzheimer's dementia was the most frequent diagnosis of Medicare hospice patients, followed by other debilitating illnesses that didn't fall into a specific category.

Lung cancer, congestive heart failure, and respiratory disease rounded out the top five diagnoses. Average length of hospice stay for Medicare patients was 71 days in 2008, down from 73 days in 2006 but up from 48 days in 1998.

"Clinically the general trend is toward people who have chronic diseases other than cancer," said Brenda Clarkson, executive director of the Virginia Association for Hospices.

"Dementias are probably the biggest growing group," Clarkson said. "The national average length of time is about two months. In Virginia it's less than that."

The Virginia Department of Health maintains a list of licensed hospice providers, including those that are Medicare-certified. Hospices can be for-profit or nonprofit. Hospice services can be provided in the home, in dedicated hospice buildings and in hospice units in hospitals. Medicare pays hospice providers according to the intensity and type of services.

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Patients and their families get care from a team that usually includes a nurse, social worker, nurse's aide, chaplain and others. Typically patients eligible for the Medicare hospice benefit are those with a prognosis of six months or less to live if the disease takes its normal course. However, patients can be approved for additional six-month hospice periods.

"A patient can stay with us longer than six months," said Brenda Mitchell, chief executive officer of Crater Community Hospice, the agency working with the Heaths. "Usually that is not an issue. The issue we deal with more and more on a day-to-day basis is usually we get referrals late."

Clarkson agreed that referrals are often later than sooner. "We often have patients referred just hours or days before they die. I think there is somewhat of reluctance from people to get in touch with hospice at a time during which we can do our best work," she said.

Mitchell said that shows there is still a need for education about hospice.

"Sometimes people have the misconception that hospice is only for people with a very limited life expectancy," she said. "They don't think about hospice until very late into the disease process. The patient is bedridden, and they start thinking 'We really need help now.' With hospice, if you can get in and start providing services, we are able to prevent some of the crises. . . . When you get a patient referred and that patient is only with you for two weeks or less, the caregivers are exhausted. The patient may not be symptom-managed. They may not have any supplies in the home. We don't have time to get to know the family and help them."

When the Heaths turned to hospice, they knew a little about it already. When Theresa Heath's sister-in-law died of cancer, the family used hospice services. Her brother, Phil Diacont, has since retired, sold his house and move in with the Heaths to help her care for Jerry Heath.

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Recent debate over health-care reform has raised issues about the cost of end-of-life care. One often-cited government statistic notes that end-of-life care is expensive, perhaps unnecessarily so. A Government Accountability Office report cites data showing 28 percent of Medicare spending in 1999 was used for patients in the last year of life.

Hospice, some studies suggest, may reduce end-of-life care costs while at the same time not subjecting patients to futile medical intervention. A 2007 study by researchers at Duke University concluded that hospice care reduced Medicare expenditures during the last year of life by an average of $2,309 per hospice user.

Smith, at VCU, has done similar research, looking at costs of care for dying patients in a hospital intensive-care unit versus in a hospital palliative care unit.

"We were really surprised when our first analysis showed that the cost of dying in the hospital was reduced by almost 60 percent for each day," Smith said. "We published that in 2003." Other studies since then have shown costs reduced 25 percent to 50 percent per day.

"It's not because we are turning off ventilators or stopping needed services," Smith said. "It's mostly because we have open and honest conversations with people about what can and cannot be done and find out their wishes for how they want to spend the remaining time they have."

Still, people worry about hastening death. Opponents of health-care reform, for instance, referred to "death panels" that would decide who would live or die.

The proposed health-care plan does not mention "death panels," but it addresses hospice -- adding provisions that require public reporting of quality data, proposing revisions on how hospice care is reimbursed and creating three-year demonstration projects to evaluate hospice care.

There also are studies of cancer patients that show those in hospice care live as long or longer than those who continue with chemotherapy, Smith said. Other studies suggest terminally ill patients frequently show improvement once in hospice care because symptoms and pain are under control.

"Hospice care has always been about letting people live whatever time they have to the fullest," Smith said.

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Jerry Heath, his wife said, has been in and out of hospice care for several years. The past week, she said, has been another difficult period. He developed a bladder infection. A nurse has visited every day.

"The last two or three nights my brother and I haven't had any sleep hardly," Theresa Heath said. "He's very disoriented. There are a lot of things working against him. We'll work though it."

Contact Tammie Smith at (804) 649-6572 or TLsmith@timesdispatch.com.