Providers, patients and families are all grappling to understand what this varying level of care is all about.
"Palliative care leaders are trying to distance themselves from hospice because they feel hospice has a branding problem," since it is associated with dying or end-of-life care, says Stuart. Hospice officials believe they have "painted themselves into a bit of a corner in this branding and are trying to move upstream in the care continuum," says Michael Nisco, MD, MBA, medical director of the Saint Agnes Medical Center Hospital and Hospice and Palliative Care Services in Fresno, CA.
Enormous complexities confront health professionals charged with treating complicated illness, and providing end-of-life care.
"We haven't been able to deal with the issues of death and dying very effectively in our culture," says Kathleen Potempa, dean of the University of Michigan School of Nursing. "When you have a very seriously ill person, a physician is trained to do everything to save a life, and the family may be [hoping] that one more thing will be the magic bullet, but that isn't the reality."
Helping patients and their families deal with the stark realities of severe illness and impending death is a growing concern among physicians in general, and the issue is taking center stage within palliative and hospice care communities.
Stuart and Nisco see palliative care as a way for healthcare facilities to broaden services for chronically ill people, while also serving as an important link to hospice care. Palliative care has extended outside the hospital setting to ambulatory and home-based services, Stuart says. Having an integrated program that involves hospitals, medical homes and community-based services helps patients and their families to deal more effectively with late-stage chronic illness, he adds.