And the survey said . . .
A six-member research team from the Supportive Care of the Dying Project: A Coalition for Compassionate Care in Portland, OR, reported in "Living and Healing During Life-Threatening Illness" that patients with life-threatening illnesses desire the following from their health care professionals:
· First and foremost, they wanted to focus on living, rather than dying, regardless of their health, says Sylvia A. McSkimming, PhD, RN, executive director. She suggests we stop using the phrase "terminally ill" because the term categorizes people as dying and has the possibility of getting in the way of treating people as living.
· Secondly, they wanted information, not just about the disease but about the dying process as well as alternative healing. "In addition to being given information, they want to know where to look for this information themselves," she says. "Having this information gives them a sense of control over their choices and allows them to make choices that are in sync with their personal values."
· They experienced a refocus on spiritual and emotional healing.
· They wished physicians would take their symptoms more seriously, even before the diagnosis of a life-threatening illness.
· They feared losing the capacity to care for themselves and becoming dependent on others.
· They wanted professional caregivers to respect their values and wishes concerning care, even if patients happened to choose alternative therapy in addition to standard medical care.
· They wanted professional caregivers to include other family members in discussions about treatment. They'd like to be treated as if they and the caregiver were one "unit."
· They wanted physicians and health care providers to be comfortable talking about death. "They told us about experience after experience in which the physician was reluctant to discuss the possibilities of impending death thinking that such discussion would destroy hope," McSkimming says.
For more information on the the responses of the bereaved, health care professionals, and family members who were included in the study, see www.chausa.org. Or, the executive study is also available for $3.25 from The Catholic Health Association of the United States, Attention: Order Processing Department, 4455 Woodson Road, St. Louis, MO 63134-3797. Telephone: (314) 253-3458.