Hospice Care Is a Point of View, Not a Place

NEW YORK--A hospice is not a place but, rather, a point of view, PaulBrenner, MDiv, said during a teleconference sponsored by Cancer Care Inc."Hospice care can take place in different settings: home, hospital,or hospice," he said. It is hospice's fundamental assumption--thatthe end of life is a normal and valued part of human development--thatsets it apart from other health care services.

"End of life has its own unique tasks, challenges, and benefits,"said Mr. Brenner, executive director of the Jacob Perlow Hospice, a programof Beth Israel Medical Center, New York City.

"Part of how hospice care works," he continued, "is tohelp patients and families learn something terribly critical about thehuman condition they may not be able to learn at any other point of life."

Hospice care, for example, is the only form of health care in whichspiritual care is a mandated core service and the only form in which thelaity have a mandated role.

In a Medicare-certified hospice program, he said, no less than 5% ofall services must be done by volunteers in order to reaffirm that the patientstill belongs to the community.

Not only do dying patients need symptom relief and palliative care,they need support for their basic autonomy, Mr. Brenner said. "Autonomyis experienced very differently at the end of life than when one is inthe fullness of life," he noted. "The dying patient is lookingat life from a position of increasing weakness with all the attendant fearsthat brings: loss of control, autonomy, independence, one's role in lifeand the family, privacy, value, and meaning."

Suffering Not the Same as Pain

The dying become uniquely dependent upon others to meet the most elementalneeds of daily life. "To expect people to be able to make decisionsin the same way as before their illness is to fail to understand how muchadditional emotional and spiritual support is needed," Mr. Brennersaid. "Constant attention, education, and empowerment are a part ofthe whole process of taking someone through this experience."

Patients may suffer, he noted, when these issues are not addressed.Suffering is not the same thing as pain, he said. "Pain happens inthe body, but suffering is more about personal meaning and value. Hospicecare seeks to alleviate suffering in this broader understanding as wellas pain."

Providing the family with support is another key element of hospicecare. "It involves the realization that the patient and the family--thatis, whomever the patient identifies as family--is a total unit of care,"Mr. Brenner said. "You can't treat the patient in isolation from thefamily, and you can't treat the family on an occasional basis."

Hospice programs generally will follow family members for at least ayear after the death of the patient to help them restructure their lives,he added.

Re-defining 'Hope'

Hospice care comes out of a very deep commitment to serve life at thevery time life is ending, he commented. "Many of the things that hospicecare seeks to do can be better understood if that point of view is grasped,"Mr. Brenner said. "Hospice care is not about giving up hope. It isabout the re-definition of hope and helping people through a very difficulttime of their life."