Hospice: Complementing EOL with COL

An old friend from upstate New York called me recently, crying and upset. Her mother has been on hospice for a month and she described it as a "depressing experience for the entire family." When I asked Linda to explain, she went back to the first meeting with the hospice representative who kept reminding her that her mom had less than six months to live and that she was at EOL (hospice jargon for "end-of-life"). "I didn't think hospice care would be such a downer," Linda said. It doesn't have to be.

From 1963 when Dame Cicely Sanders introduced the idea of specialized care for the dying to the United States in a lecture at Yale University to 1969 and the publication of On Death and Dying by Dr. Elisabeth Kubler-Ross describing the five stages through which many terminally ill patients progress, all the way to our modern day, hospice has been a trusted resource for patients and their families. The hospice colleagues that I have had the pleasure and privilege of collaborating with as a chaplain have been the most caring, competent, and compassionate professionals in any vocation requiring patient care and support. Is there room for improvement? Always.

Dr. Christian Kerr, MD, PhD, a palliative care physician who began working in hospice said that his patients made him see the dying process in a whole new way. "Death is not a sad experience for everyone," he said. In his book, Death Is But a Dream, he shared stories of patients he cared for in hospice, showing that dying is much more than suffering. It can be a time when patients become emotionally awakened, and there can be levels of comfort and peace that can't be explained by science. Dr. Kerr also noted that 88% of his hospice patients reported seeing visions when they die. Often those visions, vividly real to the person experiencing them, are of people who have died before them and they provide a great sense of comfort, peace, and even joy. Dr. Kerr's opinion was reinforced by hospice nurse, Hadley Vlahos, in her 2023 NY Times bestselling book, The In-Between.

So, rather than concentrating on preparing patients and families for EOL, I would suggest that our emotional and spriritual energy focus more on the celebration of life (COL) for patients and their families. Hospice already has built-in tools and resources for celebrating a patient. There are multiple legacy projects, pinnings for veterans and nurses, and volunteers for our patients. But it's more than an activity.

Celebrating a patient's life needs to happen with every conversation and interaction with the patient and their family. People move in the direction of their currently dominant thought. It's a fact of life. Let's have our patients and their families centered on celebrating the experiences of their lifetime in an atmosphere of faith, hope, and love.