Steve Pantilat, M.D. was the keynote speaker for the conference entitled Soul Work on Living and Dying that friends and I attended a few weeks ago. Dr. Pantilat is a renowned expert on palliative care — care which he describes as “focused on improving the quality of life for people with serious medical illness.”
I’m going to offer a few highlights of his presentation (any errors are mine, straight from my notes), and suggest that you read his book, Life After the Diagnosis.
One: We tend to think that we must choose between quality and quantity of life: we must choose either every treatment offered us to prolong life, or refuse treatment and die. This is a false and damaging dichotomy, as much care is available to make life in the face of illness more palatable — and often longer. Dr. Pantilat advocates for everyone receiving palliative care from a team of caregivers within six weeks of a diagnosis of metastatic cancer.
Two: A terrible question: “Would you like us to do everything possible?” Of course; who is going to sat “no” to question like that? I have been with both parishoners and family when that question has been asked, and it has been very difficult to walk the conversation back with what is always my next question: “Could you please explain the likely consequences of a ‘yes’ answer?”
A good question: “How are you hoping we might help?” People may have very specific goals related to pain management, surviving until a family event takes place, travel plans, where they want to be when they die — but an open-ended question is needed for those hopes to surface. My own commentary: People are often too intimidated by the presence of a physician at a hospital beside, or too frightened by the death they have not discussed with anyone, to say, “I know I’m going to die soon, so I think I’ll skip the clinical trial, and go home to be with my family instead.” We have to ask, not assume, what someone’s priorities are.
Three: People are fearful that talking about these issues will destroy hope. In fact, talking about the questions increases hope. Other good questions include, “What are you hoping for in your future?” “What worries you most about what lies ahead?”
Four: A most unfortunate statement: “There’s nothing more we can do.” In fact, there is always something that we can do in terms of helping someone address their concerns, companioning them, and alleviating their feelings of abandonment.
Five: It’s a myth that the goal is to have a “good death.” I would take issue with his statement that “grief is not mitigated by age and a ‘good death,” but his overall point is a good one: The goal is to live a good life.
Next post: Another of our speakers.