Reviewed by Nancy Eichhorn, PhD

“Death, dying, loss and caregiving are facts of life” (pg. 211)

Reviewing a book that involves a new field of knowledge feels like enrolling in an intensive graduate seminar—at a minimum, it’s a semester-long commitment, if not paving a path for continuing education. The time and research dedicated to grappling with new concepts extend far beyond what is contained between the front and back covers. The result is not a simple arc of learning but an oscillation: starting to get it, getting confused, gaining ground, stalling out, moving deeper into the content. Eventually, my perspective shifts as my understanding deepens one page at a time.

Reading Well-Being at the End of Life: Reimagining Palliative Care brought me into new knowing, including what the words palliative care even meant. Abel and Kellehear want readers to see palliative care not as a medical specialty but as a broader social, civic, and compassionate response to serious illness, dying, grief, and caregiving. Their anthology broadened my conception of end-of-life care and challenged me to consider a pertinent question repeated throughout the book: what would it mean for communities, families, clinicians, and institutions to share responsibility for well-being until the end of life?

My Experience of End-of-Life Care

When I first received the invitation to review this book, I focused on three words: end of life. I immediately thought, oh, it’s about ‘hospice’.

Our family cared for Mom at home. Her decline started with a stage four cancer diagnosis in 2011, then three recurrences with medical treatments triggering the Alzheimer’s that eroded her memory and left a widening gap between what she knew and what she could still recall. She would say, “I can’t be here now,” referring to the classes she and my dad attended at Spirit Rock, a spiritual and educational center immersed in mindfulness practices. Over time she stopped eating solid foods and then refused liquids. After a decade of fighting various symptoms and treatments, my mom’s soul decided it was time to return home to the God of her belief. She welcomed death as the entrance into Heaven, and what came next didn’t scare her. . . . (excerpt, read PDF for full review)

Back to the Book

Reading this book taught me that palliative care is not the same as hospice. Palliative care can begin at any stage after a serious, long-term disease has been diagnosed—cancer, Parkinson’s disease, Alzheimer’s disease—while hospice usually begins when curative treatment is no longer the focus and death is expected. The mutual vision of hospice and palliative care is to minimize suffering so that we can “live until we die.” The purpose is to address distress and ease discomfort while supporting well-being and honoring the living until death comes (pg. xiii).

Hospice and palliative care both attend to the needs of the individual and family, but they vary in timing, scope, and sequence. Abel and Kellehear trace hospice’s roots through religious- based histories of care for people on pilgrimages: the ill, injured, hungry, and dying, with care centered on cleanliness, protection, safety, and companionship. Gradually it became focused on medical and nursing care. Today, both hospice and palliative care are expanding in new directions because of thinkers and practitioners like Abel and Kellehear.

To read the entire review, please click here to download the PDF