Hospice Care Helps Dying Take Their Last Journey

When my mother died last fall, in a nursing home in Nebraska, the person who called to tell me of her death wasn’t my father. It was a hospice nurse named Eric, an extraordinary young man who had spent much of the previous 48 hours sitting with my mom while also on the phone with me, as her health took a rapid turn for the worse and my family and I tried to make travel arrangements to get to Nebraska from New Jersey in time.

We didn’t make it, something I’ll always regret. But what got me, my father, and our family through those last difficult days of my mother’s life — as well as the previous six months — was the care provided by Eric and his fellow hospice nurses.

Hospice is not a service you want to think about needing — but it’s one that everyone should have access to at the end of their life. It’s end-of-life care provided by skilled professionals and volunteers that is neither aimed at prolonging your life nor hastening death — but rather making your last days, however long they may be, comfortable, dignified and peaceful. Hospice provides pain medication and palliative care, but doesn’t pursue “extraordinary measures” such as intubations to save a patient’s life.

There are more than 4,700 hospice programs across the nation, and nearly 1.4 million patients received hospice services in 2007 to ease pain and suffering in their final days, according to the Hospice Foundation of America. In fact, nearly 40 percent of the 2.4 million deaths in the United States in 2007 were under the care of a hospice program, says the National Hospice and Palliative Care Organization (NHPCO).

Hospice care can be provided in a patient’s home, a nursing home or a hospital, and is virtually free under Medicare, Medicaid or insurance plans for most adults — although insurance plans still do not generally cover hospice care for pediatric patients, a gap that desperately needs filling.

Although hospice care is generally chosen when a patient is thought to have six months or less to live, patients can stay in hospice care almost indefinitely, as no one’s crystal ball is accurate enough to say exactly when someone will die.

But many people still don’t realize what hospice can do for them. A National Hospice Foundation survey found that 75 percent of Americans don’t know that hospice care can be provided at home, and 90 percent don’t realize that Medicare pays for it. Because of this — and perhaps, in some cases, because doctors are unwilling to “admit defeat” by referring to hospice care — the average hospice patient receives care for less than a month.

What exactly does hospice do? It all depends on the patient and the patient’s family. When Odyssey, the hospice program that cared for my mother, was first called to help our family, the Odyssey team was with my mom around the clock, as her declining health and mental condition (she had advanced dementia) made it no longer possible for her to stay at home.

They monitored her vital signs. They helped feed and bathe her. They worked with my father as he made plans to move her into an assisted living facility with a memory wing. They sat and talked with her, showing endless patience with the circuitous and repetitive conversations that dementia had left her with — calm even when she became agitated and combative. They sat up late at night with me, my husband and my father, talking about our fears, our grief and our memories.

When Mom moved to the assisted living facility, she no longer needed around-the-clock hospice monitoring, but the hospice nurses still came to see her on a regular basis, coordinated with the caregivers at the facility, and talked often with my father.

“Hospice nurses, physicians and aides teach the necessary skills for care while social workers and chaplains provide emotional and spiritual support,” explains a brochure from the American Hospice Foundation. “Twenty-four hour on-call availability and a network of extraordinary volunteers provide a safety net. All hospices offer volunteers to run errands, give family caregivers a break, and provide an extra set of hands or a listening ear.”

And in a community as diverse as the Washington region, hospice caregivers face even more complex demands. “Our area is such a melting pot for so many different people and so many different languages,” said Malene Davis, president and chief executive officer of Capital Hospice, the largest hospice care provider in the area, serving patients in the District, Prince George’s County in Maryland, and Northern Virginia. “But when you come down to it, people are people and this is the most appropriate kind of care for someone who has advanced illness and needs special care, special nurturing, no matter what their background.”

Capital Hospice (www.capitalhospice.org; (866) 545-6964) has served more than 45,000 patients since it was founded 30 years ago. It cares for patients in their own homes, in long-term care facilities, and in the Halquist Memorial Inpatient Center in Arlington, Va., one of the nation’s first free-standing acute-care inpatient hospice facilities.

Capital Hospice staff and volunteers speak more than a dozen languages, although the two most common languages served (other than English) are Spanish and Korean. The organization also has a Spanish outreach program called “Caminando Juntos” or “Walking Together,” which not only offers caregivers who are fluent in Spanish, but who are also familiar with the culture of care giving for a terminally ill person in Spanish-speaking countries. “I actually think we should change the word hospice to something like that,” said Davis of the walking together program. “That’s really what it is — we walk together with you through this process of advanced illness.”

In addition to ethnic and cultural diversity, the religious diversity of the Washington area plays an important part in the needs served by Capital Hospice. “For example, we are working with a family who is Muslim, and the father cannot receive care from any woman,” Davis explained. “That means we have to scramble and make sure we have male providers available for them whenever needed. Every case is special. We never want to tell anyone, ‘We can’t take care of you.’”

Respecting various religious beliefs is particularly important for families facing the death of a loved one. For example, some religions require that the body be bathed at the time of death, while others require a religious leader to come in and bless the body before it leaves the house.

“One of the things we constantly remind our staff is that it’s not OK to come to work and not be thinking about the special spiritual needs of the family,” said Davis. “We have a wonderful chaplain who keeps us abreast of all the different holidays going on, and if you’re caring for a patient of this religion, here are things to remember at this holiday. You wouldn’t find that in a hospital. Even if they would like to, because it’s so busy, they can’t possibly do that. Hospice is so much more intimate — it’s a sanctuary.”

Nearly four months after my mother’s death, the pain is still sharp — and hospice is still caring for our family. Recently, my father received an article from Odyssey that comforted him on a particularly rough day. It explained that there is no one “right” way to grieve — that bereavement is a very personal process, and everyone grieves in their own time and in their own way.

Our society is very uncomfortable talking about death and dying, so when we have to face it — for a loved one or for ourselves — we are often utterly unprepared. With hospice care, confronting death can be less frightening, less painful, and less lonely. “We don’t concentrate so much on the limited life expectancy,” Davis said. “We want people to live as long as they can, but more than that, we want them to be able to make the most of every day.”

About the Author

Gina Shaw is the medical writer for The Washington Diplomat.