Hospice is about hope of another kind,” says Pam Brubaker, RN, a hospice nurse in Roseville, Calif. Hospice is not, as some people imagine, a place where you go to die. Rather, it is a comprehensive program of care that supports patients and families with medical, emotional, and practical assistance based on their individual needs and wishes. Hospice enables patients to spend their final days with dignity, comfort, and compassion.

Hospice programs have been growing in the United States since 1974, when the first hospice program was established in this country. Today they are part of mainstream medicine, with more than 3,300 hospice programs in the United States.

Hospice is a concept of care that affirms there is life left to be lived right up until the end — allowing patients to spend their final days, weeks, and months as they wish. At a time when a physician determines that a patient has a life expectancy of six months or less and the patient decides that he or she no longer wishes to receive aggressive curative treatments, hospice programs step in with an array of services that range from pain management to adaptive medical equipment to spiritual and emotional counseling.

The cornerstone of a hospice program is a comprehensive team of physicians, nurses, medical social workers, therapists, counselors, chaplains, and volunteers who address the medical, emotional, psychological, and spiritual needs of patients. The team also provides practical and emotional support to family members, including bereavement counseling.

Master Sgt. Margaret Ervin, USAF-Ret., MSW, works with Brubaker at the hospice in Roseville. “Much like the military,” she says, “hospice is its own community of care and support.” Hospice care most often is provided in a patient’s or family member’s home or a home-like setting. “To allow someone to die in their home is one of the best gifts you can give,” Ervin says.

Although children and young adults may be hospice patients, most patients are over age 65 and about equally divided between men and women. Cancer is the most common diagnosis for hospice care, but its proportion is decreasing. Other common diagnoses include AIDS, Alzheimer’s disease, cardiomyopathy, congestive heart failure, chronic pulmonary obstructive disease, and emphysema.

People who have had experience with a hospice program often sing its praises. “I got involved when my stepdad became terminally ill,” recalls Lt. Col. Bunny Ambrose, USA-Ret., of Denver. Because of her own medical problems, Ambrose’s mother was unable to care for her husband at home, so he was placed in the hospice wing of a nursing home.

“The move to hospice was a signal that we were near the end,” says Ambrose. “But I was surrounded by a group of people that just held me up — a whole team I could turn to at any moment.” She says the priority was to make her stepfather comfortable, which was a huge relief to Ambrose and her mother. “Afterwards we got phone calls and bereavement support [from the hospice team]. I never met a nicer group of people.”

Some doctors, however, are reluctant to recommend hospice care to eligible patients, says Navy Medical Corps veteran Dr. William Lamers Jr. Lamers is among the early founders of formal hospice programs in the United States. Today, retired from private practice, he serves as a medical consultant for the Hospice Foundation of America, answering patients’ questions about hospice through its Web site (see “Resources,” page 68).

He cites several reasons for physicians’ reluctance. Some fear patients will think the doctor has “given up.” Lack of experience with hospice is another factor. “Even today some doctors don’t want to entrust their patients to an unknown entity. Many cherish the positive aspects of their relationship with patients and don’t want to ‘abandon’ them to the care of others.”

Finally, Lamers says, medical training doesn’t provide enough information and experience about how to deal with death. “To graduate from medical school,” he says, “I had to deliver 50 infants, but [I didn’t spend] a single hour on how to manage the severe, chronic pain that is sometimes present in persons who are dying.” Fortunately, pain management and end-of-life issues are addressed more commonly in medical training today, though Lamers says there still is much work to be done.

A patient may choose to use hospice as long as a doctor certifies the patient has a life expectancy of about six months or less and that curative treatments no longer are beneficial. Traditional treatments such as chemotherapy and radiation still may be used as a means of symptom relief rather than cure.
The patient need not be bedridden. In fact, the patient may return to traditional medical care and aggressive, curative treatment at any time a physician deems it beneficial. At the end of six months, the patient may stay with hospice, as long as the illness still is terminal.

In view of some doctors’ reluctance, Lamers suggests that the patient or family ask about hospice. “You can discuss it together and look for a time line,” he says. The doctor may say it’s too soon, but once the idea has been broached, it can be revisited when the time is right.

“When the family brings up hospice,” says Marine Corps veteran David Abrams, president of the Hospice Foundation of America, “the doctor feels freed to address the subject.” Abrams notes that hospice programs address the need for greater physician awareness. Many hospices now have outreach programs to inform doctors about how hospice can complement end-of-life care for patients, and personal physicians are encouraged to continue caring for their patients as part of the hospice team.

Many people are surprised to learn that hospice services are covered by most insurance, including TRICARE, Medicare, and Medicaid. While private coverage is variable, TRICARE and Medicare benefits pay for almost everything such as medical equipment, medications, and personnel, including home care providers, doctors, nurses, therapists, and social workers. Medicare has a support program that provides up to three days of hospital coverage while hospice arrangements are being finalized. This ensures that a patient cannot be released before needed medical accommodations are made at home.
Many hospices also have endowments funded by foundations, corporate grants, memorial gifts, and fundraising activities. These charitable dollars can help cover expenses for uninsured clients.
Hospice programs support the process of living and dying. When death does come, “we want families to look back with peace and no regrets,” says Brubaker. “Families discover strength. They stay with their loved ones to the end, and that is everything.”