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Helping caregivers practice palliative care

“All this research is very nice, but how does it help with our patients?”

An audience member at a UC San Francisco lecture in the late 1980s once asked this question of the esteemed psychology researcher Susan Folkman, PhD, professor emeritus of medicine at UCSF, who described the question as an “eye opener.” She emphasized yesterday at the beginning of her talk, "How to Effectively Help Patients and Families Cope with Serious Illnesses", that theory and research must be translatable into what practitioners do with patients.

Folkman’s presentation at Stanford kicked off Palliative Care 2012: Key Challenges and Best Practices, a continuing medical education activity led by VJ Periyakoil, MD, clinical associate professor of medicine, and sponsored by the medical school. The symposium aims to educate clinicians and other healthcare workers who treat patients with life-limiting illnesses; objectives of the four-lecture series include recognizing and addressing emotional aspects of end-of-life care.

How do people maintain well-being in the midst of stress? Folkman cited her extensive research on the impact of stress on caregivers, defining stress here as an instance in which demands exceed resources and the situation is personally meaningful. Coping with stress means changing cognitive and behavioral efforts to manage demands of the situation. Methods could include indulging distraction, completing ordinary tasks to feel in control and maintaining a focal point. For the caregiver, a focal point could be the love for a partner. Folkman quoted one patient's words for staying focused as his health was deteriorating: "What do I do now with the time I have left?"

Since the mid-1980s, Folkman has studied a particularly taxed group of caregivers - those who tend to AIDS patients. The virus was then a largely unknown phenomenon and the outlook for those infected was dire. “We rapidly became a study of bereavement,” Folksman said, explaining that her research from 1990-1997 coincided with a spike in diagnoses and deaths from AIDS. The intense, prolonged psychological stress involved in caregiving likely would be amplified if the caregiver was also HIV-positive. A primary caregiver could be on-call around the clock. Sleep deprivation and exhaustion from repeatedly moving a physically weak patient to change clothes and sheets could deplete even the most devoted caregiver. AIDS at that time came with frightening uncertainties before antiretroviral medication became available. Additionally, social stigma and lack of outcome control associated with AIDS rendered caregivers of HIV-positive patients particularly demonstrative of stress effects from providing palliative care.

So, what can be done to maintain well-being of the caregiver when nothing can be done to escape the fate of a life-limiting disease for the patient? “Hope is essential. I’ve now become a fan of hope - hoping for the best while preparing for the worst,” Folkman said. Attending to both positive and negative emotions, and making an effort to recognize and savor the positive ones, can help. As reality intrudes and hope diminishes, Folkman suggests that caregivers engage in goal revision. But, she advised,  refrain from using terms like “goal revision” when tending to vulnerable, exhausted caregivers’ emotions.

Previously: Examining the generational gap between physicians and patients in hospice and palliative care, Some reflections on the 30th anniversary of AIDS, KQED health program focuses on end-of-life care
Photo by Mike Schmid

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