Misunderstanding of Palliative Care Prevents People from Getting the Care They Need
Palliative care’s association with end of life has created an “identity problem” that means the majority of people facing a serious illness do not benefit from treatment of the physical and psychological symptoms that occur throughout their disease, according to an article co-authored by palliative care experts at Harvard Medical School, Massachusetts General Hospital, the American Cancer Society, and Johns Hopkins University. The authors of the article, which appears in the New England Journal of Medicine, say palliative care should be initiated at the same time as standard medical care for people with serious illnesses, not brought up only if treatment has failed.
“Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies.”
The authors say for palliative care to be used appropriately, the fundamental differences between palliative care and hospice care must be recognized, a distinction that is not well known. In fact, 7 in 10 Americans describe themselves as “not at all knowledgeable” about palliative care, and many healthcare professionals believe it is synonymous with end-of-life care. While both hospice care and palliative care are intended to relieve suffering, hospice care provides care for people in the last phases of an incurable disease so that they may live as fully and comfortably as possible. Palliative care focuses on helping people get relief from symptoms caused by serious illness and is appropriate at any age or disease stage.
Another barrier to palliative care is the fact that policymakers have been reluctant to devote resources to initiatives perceived to be associated with death and dying. The authors point to lower levels of government funding for palliative care research compared to funding for other specialties.
“The practice and policy behind palliative care must be considered independently from end-of-life care,” write the authors. “Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies.”
The authors add that implementing earlier palliative care would not only improve quality of life but would also reduce spending and help people with advanced cancer clarify their treatment preferences. Evidence shows that people who receive palliative care early on even have better outcomes.
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This article was originally published in Coping® with Cancer magazine, January/February 2014.