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Public Awareness and Perceptions of Palliative and Comfort Care

David Valdez, White House Photo Office

In April 2018, Barbara Bush, champion for universal literacy and former First Lady of the United States, died at the age of 92 after a prolonged illness. Two days prior, a family spokesperson announced that she had “decided not to seek additional medical treatment and [would] instead focus on comfort care.” We analyzed Google Trends data to assess whether this announcement generated public curiosity regarding the phrase ‘comfort care.’ Google searches for the phrase ‘what is comfort care?’ spiked immediately after the April 15 announcement, exceeding the prior year’s search frequency by nearly fourfold (Figure). This spike was disproportionately common in Houston, Texas—Mrs. Bush’s hometown. These findings highlight a lack of awareness regarding palliative-related services and are concerning given the benefits of palliative care for patients with life-limiting illness.

Although the term was coined nearly half a century ago, there is substantial misunderstanding and lack of awareness about palliative care. A national survey of 800 US adults conducted in 2011 by the Center to Advance Palliative Care found that 70% were “not at all knowledgeable” about palliative care.1 After they were provided with a brief description of palliative care services, 9 of 10 felt it was important to have access to palliative care for patients and their families, including their own loved ones. Another study surveyed 800 New York State adults in 2016 regarding palliative and hospice care and found similar results.1 Most equated palliative care with symptom management, but were unaware that it included psychosocial and spiritual support, bereavement services, support for family and caregivers, and the affirmation of life—key principles of palliative care. Individuals also used palliative and hospice care definitions interchangeably and regarded both as “end of life” care. Only 22% recognized comfort care as a component of palliative care. In addition, 37% and 53% of respondents demonstrated misperceptions about hospice and palliative care services, respectively. Results from a randomized trial of a nurse-delivered palliative intervention vs usual care among patients with advanced cancer found that many believed that palliative care was synonymous with end-of-life care, which was negatively stigmatized to represent death, resulting in avoidance and fear.2 Taken together, these findings suggest low public awareness about palliative care and its benefits, although individuals appear to be interested in accessing this care for their loved ones after being introduced to the core concepts of the specialty.

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-Trevor Lane, MD, Deepa Ramadurai, MD, Joseph Simonetti, MD, MPH,

This article originally appeared in the February issue of The American Journal of Medicine.

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