Conversations about death are not easy. Conversations about your own death can be even more uncomfortable. A nurse researcher from the University of Houston College of Nursing explored a novel way of encouraging advance care planning for terminally ill patients by asking them to remember the cancer experiences of family or friends and apply the lesson to their own situation. It’s an intervention called Autobiographical Memory.
“We wanted to know if these conversations became easier and helped to initiate planning for the terminal patient’s care,” said Assistant Professor Cheryl Brohard. “Nurses are part every aspect of life—from birth to death. It’s appropriate for them to initiate these important conversations.”
Brohard said 65 – 85 percent of cancer patients, including those in hospice, will die without an advance care directive or a discussion with family or friends about their preferences in care. Advance directives refers to things like living wills or medical power of attorney.
Using Autobiographical Memory (ABM) interventions, the terminally ill patients were asked to remember the death of a family member or close friend, which was considered to be a turning point or momentous event that influenced future events.
“We followed a detailed script to encourage the participants to talk about very sensitive topics,” Brohard said.
The 50 patients selected all had terminal cancer diagnoses, were in hospice and did not have advanced directives or the conversations with family members regarding any directives. Half received the autobiographical memory intervention before completing a 22-item survey about their knowledge, feelings about and intentions of pursuing an advanced directive. The study spanned 12 months.
“One man, diagnosed with pancreatic cancer, shared his father’s pancreatic cancer journey, explaining the distress over the decision to remove life support,” she said. “His memories of his father connected to life support involved something he did not want to happen to him. He signed a do-not-resuscitate form and spoke openly and comfortably about his decision.”
No one was required to complete an advanced directive following the intervention. Participants’ feedback did show, however, that the autobiographical memory intervention was easy to do, quick and stimulated more discussion with family members about health care decisions.
“When people have knowledge of advance care planning, but are not ready to make decisions or reconcile these wishes, autobiographical memories of family members or close friends provide a safe context for people to think about advance care planning,” she said. “This intervention may be useful for making difficult decisions about a feeding tube, IV therapy, blood transfusions and do-not-resuscitate directives.”
Brohard said oncology nurses in particular are in a unique position to serve as an advocate about advance care plans. She said oncology educators could provide instruction to novice nurses on how to use autobiographical memory interventions with patients and their families.
“If the planning was conducted early in the cancer trajectory, patients would have the luxury of time to make advance care plans and discuss their choices with their health care team, family, friends and those designated make decisions,” she said.
Brohard has developed a number of programs to help future nurses learn how to have conversations with patients and their families about end-of-life.