End-of-Life Workers Challenge Misconceptions About Death and Hospice Care
NEW YORK – A growing movement among end-of-life care professionals aims to dismantle common fears and misunderstandings surrounding death, hospice, and palliative care. Experts are actively working to shift the narrative,emphasizing that focusing on quality of life,comfort,and open conversation can significantly improve the final stages of life – and even potentially extend it.
Many hold inaccurate beliefs about hospice and end-of-life decisions, according to those working directly with patients and families. A key issue is the misconception that choosing hospice hastens death. “People think that when you go on hospice, it’s a death sentence and that death is imminent,” said one hospice worker who has even faced accusations of being a “murderer” for providing this care. Former President Jimmy Carter, who entered hospice care in February 2023, serves as a prominent example demonstrating that hospice doesn’t automatically equate to immediate decline.
The distinction between palliative care and hospice is also frequently misunderstood. Palliative care focuses on alleviating suffering at any stage of a serious illness, while hospice is a specific medical service for individuals with a life expectancy of six months or less, as certified by a healthcare provider. In the U.S., Medicare covers hospice care costs under these conditions.
Experts highlight the importance of individual preferences when considering end-of-life care. Some prioritize extending life even with notable suffering, while others value comfort and quality of life above all else. To facilitate these tough conversations, Morgan Eichholz-Heller suggests a tool like values clarification cards, ideally used with a partner to encourage dialog. The cards categorize values into “must-haves,” “dealbreakers,” and “unsure” areas.
Research supports the benefits of early palliative care. A 2010 study published in the New England Journal of Medicine on advanced lung cancer patients found that early palliative care led to fewer depressive symptoms and a longer median survival rate. Eichholz-Heller explains that managing suffering frees up energy, potentially stabilizing patients and even prolonging life.
Choosing the right hospice provider is crucial, and resources are available to help navigate the selection process, including a list of 16 questions to ask potential providers offered by the American Hospice Foundation. Ultimately, end-of-life workers emphasize the unavoidable truth: “We can’t control death,” but we can control how we approach it.
