Listening to Family Stories Helps Cancer Researchers Identify Gaps in Care

Mar. 27, 2019
elderly, sick woman in bed holding the hand of a family member

Families of cancer patients described three distinct experiences — “We Pretty Much Knew,” “Beating the Odds,” and “Left to Die” — in the final weeks of their loved one’s life. Wilmot Cancer Institute researchers gathered these valuable perspectives, identified the problems, and say they plan to use the data for improving care at this difficult and emotionally charged time.

“All of the families in this study are telling us how we can be more helpful,” said the lead author, Sally Norton, Ph.D., R.N., a palliative care expert and associate professor at the University of Rochester School of Nursing. “We are listening and working to do a better job.”

The study was published recently in the journal Supportive Care in Cancer. Investigators recorded and analyzed stories from 92 families and caregivers, looking for common threads about their loved one’s final transition from active treatment to death.

head shot of Sally Norton
Sally Norton, Ph.D., R.N.

The first group, categorized as “We Pretty Much Knew,” was the largest. The healthcare system worked for them as it is designed to do. For example, a patient might say “I’ve had it, I’m done,” according to one example, and then move into comfort care after having open discussions with their loved ones and physicians about what to expect at the end of life.

The second group, which included people who described themselves as “fighters” and believed the patient would beat the odds of a poor prognosis, said they had good communication with their medical team. The patients’ wishes to continually try new treatments were honored, but they also experienced chaos at the end of the life because they were unprepared for the nearness of death.

The families in the third group — “Left to Die” — described a crisis in the final weeks. They had no memories of explicit end-of-life care discussions with doctors, and the patients spiraled into frightening and distressing emergency health situations. These families felt abandoned. 

“The third group was the smallest group, but the most tragic,” Norton added. “They felt they had no information, did not know their family member was dying, and described frantically trying to get help at the end.”

Most problems arose when families did not understand how the cancer was likely to progress, when deliberations with doctors and nurses were ineffective, and when medical decisions did not reflect a shared understanding between the family and the treatment team.

Although some families understood the limitations of available therapies, they did not know how to anticipate, identify or respond to their loved ones’ rapid decline. And in some cases, caregivers were totally unprepared and confused about what was occurring, leading to more intensive treatments and resuscitation efforts than patients had wanted and a breakdown of trust with the medical team, the study said.

Investigators suggested that loved ones might benefit from a standard plan that lays out clearly what to anticipate as patients in active treatment become too sick for additional chemotherapy and yet do not transition to hospice. Such a plan would be automatically triggered when symptoms indicated a patient’s health is markedly deteriorating. The plan would explicitly identify signs and symptoms and would develop clear action for patients and families. Ideally, it would include emergency contact information for a clinician or a response team that would quickly respond to the family and guide them, Norton said.

“The importance of clear planning and anticipatory guidance for this group cannot be overstated,” the study concluded.

The National Cancer Institute funded the research, which was a qualitative descriptive study as part of a larger, multi-center randomized trial seeking ways to improve oncologist-patient-caregiver communication in the context of advanced cancer. Co-authors are: senior author Ronald Epstein, M.D., professor of Family Medicine, Psychiatry, and Oncology at URMC and a leading expert in doctor-patient communication; Paul Duberstein, Ph.D., a former faculty member at URMC and now chair of Social and Behavioral Health Sciences at Rutgers University; Marsha Wittink, M.D., associate professor of Psychiatry and Family Medicine at URMC; Susan Stanek, M.S., R.N., senior associate at the UR School of Nursing; and Holly Prigerson, Ph.D., of Weill Cornell Medicine.