When my friend died of pancreatic cancer recently, I saw how valuable it was for her family to hear from the treating physician. Going forward, I will emulate this inspiring practice.
A friend of ours was recently stricken with advanced pancreatic cancer. At the time of her diagnosis, her performance status was excellent and, not being a surgical candidate, she chose to begin chemotherapy. Things did not go well. She had worsening pain, anorexia, and within a few weeks was hospitalized with sepsis and renal failure. Her close-knit family met with clinicians who explained that her condition was dire and supported their wish for home hospice care.
Upon returning home, our friend lingered in that liminal space between life and death for many days. We were part of many conversations about her condition which, over time, became more hypothetical, and at times infused with anger. Should she have had chemotherapy? How could doctors recommend this to someone with such advanced disease? Was it the cancer or the chemo that was killing her? What should they expect from a hospice nurse?
As I listened to these questions leading to theories and sometimes accusations, I thought of many of my own patients and families who’ve traveled this painful, often unexpected, end of life terrain. While I often check in with the families of my end-stage hospice patients, it’s fallen short of being a routine. Now on the other side, bearing witness to this struggle from the family’s point of view, I’m inspired to prioritize these conversations with loved ones. Even without new clinical treatments, we can still listen, empathize, and comfort.
When transitioning a patient to hospice care, consider:
1. End-stage disease is a vulnerable time for caregivers and loved ones.
2. Patients and families may re-examine their decisions when death is imminent.
3. An unexpected call from the hospice patient’s physician can be a welcome gift.
4. When we’re most inclined to pull away may be the best time to reach out.
This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.