NEW YORK--A hospice is not a place but, rather, a point of view, Paul Brenner, 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--that the end of life is a normal and valued part of human development--that sets 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 program of Beth Israel Medical Center, New York City.
"Part of how hospice care works," he continued, "is to help patients and families learn something terribly critical about the human 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 which spiritual care is a mandated core service and the only form in which the laity have a mandated role.
In a Medicare-certified hospice program, he said, no less than 5% of all services must be done by volunteers in order to reaffirm that the patient still 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. "Autonomy is experienced very differently at the end of life than when one is in the fullness of life," he noted. "The dying patient is looking at life from a position of increasing weakness with all the attendant fears that brings: loss of control, autonomy, independence, one's role in life and the family, privacy, value, and meaning."
Suffering Not the Same as Pain
The dying become uniquely dependent upon others to meet the most elemental needs of daily life. "To expect people to be able to make decisions in the same way as before their illness is to fail to understand how much additional emotional and spiritual support is needed," Mr. Brenner said. "Constant attention, education, and empowerment are a part of the 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 in the body, but suffering is more about personal meaning and value. Hospice care seeks to alleviate suffering in this broader understanding as well as pain."
Providing the family with support is another key element of hospice care. "It involves the realization that the patient and the family--that is, whomever the patient identifies as family--is a total unit of care," Mr. Brenner said. "You can't treat the patient in isolation from the family, and you can't treat the family on an occasional basis."
Hospice programs generally will follow family members for at least a year 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 the very time life is ending, he commented. "Many of the things that hospice care 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 is about the re-definition of hope and helping people through a very difficult time of their life."
