Recent studies suggest that fully informed patients nearing the end of their lives are less likely to choose aggressive care when they understand what they can realistically expect. They are also less anxious, and they rarely end up in intensive care units or on ventilators.
Because my progressing illness is incurable, I’ve chosen a solely palliative approach, and my oncologist has embraced my choice. Together the two of us chose a treatment regimen that would slow tumor growth while protecting what was precious to me, my quality of life. Instead of waging war with a disease that can’t be cured, my doctors and I are focusing on treatment that optimizes how I function and addresses my symptoms. This treatment will include, when I need it, comfort care for pain symptoms.
I’ve been fortunate so far, in that my pain isn’t bad. I get twinges in my right breast. If at some point it is overtaken by disease, I’ll probably have it surgically removed as a comfort measure. I also have a dull ache in my lower spine that I notice primarily if I stand too long or carry a heavy bag.
I want every patient facing end-of-life decisions — which, when you think about it, eventually will be all of us — to have access to the kind of open communication I’m receiving. Each patient deserves to understand the diagnosis, the probable course of the disease and the likely timetable. Each deserves to be asked about personal goals, and each deserves help with making treatment decisions. We also need a process that helps doctors learn that the length of patients’ lives isn’t the sole consideration.
As you read this piece, I’m heading toward two years into a terminal diagnosis. I have the most deadly form of breast cancer, and it will eventually kill me. So far the disease seems to be held at bay by one small yellow pill each night (an estrogen blocker to slow the cancer’s growth), some extra vitamins and minerals, and a monthly infusion to stave off such problems as spontaneous fractures that can be caused by the cancer eating at my spine. No treatment will work forever, though. I know that. But however my story evolves, then ends, I’m at peace. And I’m living just the way I want to.
Berman is a registered nurse and senior program officer at the John A. Hartford Foundation in New York. This article is excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at www.healthaffairs.org.