My 80 year old mother had a quick and relatively comfortable death. And that was her wish. But what if I hadn’t known I could say “no, do not rush her back to the hospital” when called in the early morning because my mom’s vitals had declined alarmingly? Because of my professional background, I knew about palliative and hospice care. I knew about the course of death and I had just read the research about the current lack of palliative support for patients with COPD and other less well recognized chronic diseases. I knew to ask for hospice or for a social worker or for palliative care---none of which was offered to me at the hospital or the rehab facility.
I would like to help step into this void and help provide patients and families this guidance. I offer the following list of suggestions to improve support for individuals with chronic, life-threatening disease. Some of these suggestions are also mentioned in the 2011 Robert Wood Johnson Foundation funded JAMA report Care at the Close of Life: Evidence and Experience (McPhee, S., 2011). This book covers it all, and I wish I had known about this resource before my mom’s death so I could have shown it to her physician. My recent experience reveals that we have a very long way to go in helping “patients live well until they die.”
In addition, we need to start having conversations earlier with our families about our wishes at this precious moment in life. Many conversations! Often the patient nearing the end of life knows and is comfortable with what they wish, but sometimes the whole family is not on board! That can take time. Five Wishes provides a nice format for thinking about what you wish and communicating it with your family (See link below). In addition, the Conversation Project has tool kits and materials for having this conversation.
Another very helpful and beautiful book is called Being with Dying: Cultivating Compassion and Fearlessness in the presence of Death by Joan Halifax.
McPhee S. Care at the Close of Life: Evidence and Experience. McGraw-Hill; 2011.