When a cure is out of the question, the goal should be the patient’s comfort

By Ann L. Rappoport

This article is posted as a courtesy of Milestones Senior Publications.

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“Hospice is not about dying,” says Jane Feinman, senior vice president of Hospice of Philadelphia, a part of the nonprofit Visiting Nurse Association of Greater Philadelphia. “It’s about living well until the end.”

A recent study concluded that Americans under hospice care lived 29 days longer than equally ill patients continuing to receive conventional medical care for their life-limiting disease. How could that be?

“When patients develop a relationship with hospice, they’re able to maximize the quality of their life,” says Dr. Roberta Turner, a palliative care physician at Albert Einstein Medical Center in Philadelphia. “Chronic pain affects the ability to heal. Hospice provides extra attention, more focused and less erratic care. When symptoms are wellmanaged, patients do better.”

Palliative care means relieving pain and controlling symptoms enough that patients don’t have to rush to the hospital so often, if at all. Patients usually reside (and die) in a home setting rather than in an acute care institution. However, hospice is less about where than about how. Hospice also offers emotional, spiritual and bereavement support to families.

Medicare Part A provides valuable benefits and choices to patients nearing the end of their lives, and to their families. These include a team of physicians; nurses; physical, occupational and speech therapists; social workers; clergy; and home health aides. Care is given in the patient’s residence. Hospice benefits include medical equipment, supplies and medicines; and the hospice team supports caregivers.

Hospice patients and families are taught to manage symptoms in their home in order to avoid calls to 911, emergency rooms and hospital visits. If symptoms become too severe to manage at home, the patient is covered for short acute stays in a hospital or, if one
exists, in a special hospice unit; or the family may opt for temporary continuous care at home.

‘You’re not in jail’

Patients can leave hospice care at any time. Or change hospice providers (“You’re not in jail,” says Turner). Some improve enough to sign themselves out of the program. Some feel well enough to resume discontinued aggressive treatments. If treatment ceases to be effective, patients can return to hospice.

Some people miss the benefits because they simply don’t know what a hospice program is or how to access it.

“Doctors are taught to fight disease,” says TylaAnn Burger, executive director of Friends Hospice, which cares for underserved groups in Philadelphia and Chester. Most medical education doesn’t focus on end-of-life issues and care.

Some people distrust the system or believe hospice means “giving up,” Burger says. They may mistakenly believe that hospice is a way to “dump” dying patients.

“The intent of palliative care,” notes Turner, “is to focus on comfort, quality of life and the whole person and family.”

Choose carefully which provider will best meet your needs, experts advise. If possible, speak with families who have used the hospice; don’t rely simply on a hospital or doctor’s listing.

How to make the choice

Consider, for example:

• Is it nonprofit or for profit? Locally based or a national chain?
• How long has it been operating?
• How personalized, patient and responsive is the person taking your call?
• Who’s available late at night and on weekends, and how long will it take for someone to come over?
• Who is the medical director, and is that a contracted or employee position? Are the personnel board-certified in hospice and/or palliative care? What training do they have?
• Will you and family members be interviewed in detail about health issues, as well as personal preferences? How often will your care plan be reviewed? How often will members of the hospice team come to your home?
• What information is provided in writing?
• With which specific in-patient facilities is the hospice connected?

For more information:

• National Hospice and Palliative Care Organization, www.nhpco.org
• Caring Connections: 800-658-8898, www.caringinfo.org
• Philadelphia Corporation for Aging: 215-765-9040; www.pcaCares.org
• Friends Hospice: 706 W. Girard Ave., Philadelphia 19123; 215-925-6848; www.friendshospice.org
• Hospice of Philadelphia: Visiting Nurse Association of Greater Philadelphia, 3300 Henry Ave., Philadelphia 19129; 215- 473-7600; www.vnaphilly.org