Most of the time, the purely medical part of my job -- figuring out pain medicines, coming up with treatment plans for other symptoms that cause suffering for patients with advanced diseases -- isn't that hard. Where it gets difficult is in the conversations, the dialogue with patients and their loved ones about where they stand and what they hope for, the truth-telling that is the essence of the work that I do.
One day last week I had three requests for new consults. All were variations on a theme -- a frail elder with anxious family members (children for two of the patients, a spouse for the third), trying to figure out what was best. One of the leaders in our field has said that the family meeting is the basic procedure in palliative care -- like applying a cast in orthopedics, or putting a tube in the windpipe in anesthesiology. So I had the chance in a single day to do three procedures, three family meetings that were all about helping distressed families navigate the stormy waters of life-limiting illness in 21st century America.
The two daughters of my first patient, who had moderate dementia and a host of other medical issues, wanted to know if Mom could "get better" -- meaning, walk again and relate to the world as she had before a series of recent setbacks. As it happens, one daughter was a lawyer who knew a lot about what's called "elder law." I reviewed Mom's situation, helped the kids to understand that what was lost could not be regained, and encouraged them to focus on what was achievable and dignity-preserving. That same day they met with a hospice representative. Mom was discharged from the hospital and admitted to home hospice a couple of days later.
My second patient was also a mom, an elderly Asian woman with metastatic cancer who had five daughters. They already knew that there was no disease-modifying treatment available. Where they were stuck was IV fluids and whether that treatment would be available if their mother enrolled in hospice. We talked that one through, and I also explained about managing cancer-associated pain. Within 48 hours of my first meeting, the patient declined visibly. She enrolled in hospice as an inpatient and passed away, peacefully and surrounded by her family, a day later.
My third procedure of the day was a long conversation with a loving wife who'd cared for her husband for five years. He had a neurologic illness that resembles Parkinson's disease (the technical name is progressive supranuclear palsy), and in recent weeks he'd lost the ability to swallow and had become much less communicative. His wife had been dressing, feeding, and cleaning her husband with almost no outside help. She considered it her marital duty. What she needed to hear from me was that yes, her husband's last chapters were being written, and yes, there was a path that would allow him to remain at home with extra help for her. He, too, left the hospital and enrolled in hospice at home.
As I reflected on each of these cases, I understood that my main role was to be both a truth-teller and a sounding board. Acknowledging reality is a lot harder than it looks. I think that patients and families sometimes continue with aggressive therapy because they believe the alternative is abandonment. One of my most powerful messages is, "You don't have to do this alone."
Sometimes I want to change the name of my palliative care program to the Department of Heartfelt Conversations, because that's the most common -- and the most challenging -- thing I do.