Largest study of this population suggests need for further research on helping them make informed choices
More than two-thirds of adolescents and young adults dying of cancer utilized one or more aggressive interventions in the last month of life, according to a retrospective study from researchers at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Kaiser Permanente Southern California. The results of the largest study to date of this population, published today in JAMA Oncology, suggest the need for more research into whether patients have been adequately supported to contemplate their end-of-life options or whether the pattern reflects their well-considered wishes, the authors note.
The researchers measured the use of four aggressive measures – intensive care, emergency room, chemotherapy and/or hospitalization – in the last month of life of 633 patients, age 15-39, who died of cancer between 2001 and 2010. The patients, who received care at Kaiser Permanente Southern California, had either been diagnosed with Stage IV cancer or had a recurrence of cancer. An initial review of a subset of111 patients found that death had been anticipated in 98 percent of cases.
This study found that:
- The young patients were more than twice as likely as Medicare patients, age 65 and older, to utilize intensive care and/or the emergency room in the last month of life. Fewer than 10 percent of the older patients used these interventions, compared with 22 percent of the adolescents and young adults.
- Use of chemotherapy and hospitalization was similar in both age groups. Among the younger patients, 11 percent received chemotherapy in the last two weeks of life, and 62 percent were hospitalized in the last 30 days of life.
“A young person facing the end of life is a particularly difficult issue,” said lead author Jennifer Mack, MD, MPH, a pediatric oncologist at Dana-Farber/Boston Children’s and researcher in the Division of Population Sciences’ Center for Outcomes and Policy Research at Dana-Farber Cancer Institute. “While use of aggressive measures might be an informed decision by young people who would do anything they could to live longer, some interventions come with a cost, which is a poorer quality of life. This study raises questions about what kind of care they’re getting and how we can get them to the best quality of life at the end of their lives.”
End-of-life care in adolescents and young adults has not been well-studied. An earlier study examined outcomes for 45 patients at a single French institution. Kaiser Permanente Southern California is a managed care organization that serves an ethnically, racially and economically diverse patient population of 3.7 million.
“We should think about talking with younger patients earlier about their prognoses, identifying their preferences and working with them to deliver care that reflects those preferences,” Mack said. “It may be that aggressive care is what they want, but they may end up on this pathway without thoughtful conversation and maybe without recognition that they are dying.”
Additional authors are Lie H. Chen, DrPH, Kimberley Cannavale, MPH, Olivia Sattayapiwat, MPH, Robert M. Cooper, MD, and Chun R. Chao, PhD, of Kaiser Permanente Southern California. The study was funded by the Cancer Research Network/National Cancer Institute (U24CA171524).