By CJ Arlotta
Much of the conversation surrounding end-of-life care has to do with the elderly making decisions based on how they’d like to spend their final days. For them, it’s more about comfort and less about prolonging life, but when children are thrown into the equation — things become a lot more challenging for physicians, patients and parents.
Published in JAMA Oncology, a new report concluded that 68% of young adult cancer patients receive medically intensive care at the end of life. The study’s authors defined “medically intensive care” as “chemotherapy within the last two weeks of life; more than one emergency room visit in the last month of life; intensive care unit care in the last month of life; or hospitalization in the last month of life.”
“This kind of care should be used when it supports the values and goals of patients near the end of life,” said Dr. Jennifer Mack, a pediatric oncologist with the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “However, this type of care is often used to prolong life, sometimes at the cost of quality of life, and so it may not fit the goals of all patients, especially those who prioritize quality of life near death.”
Researchers examined the Kaiser Permanente Southern California cancer registry data and electronic health records for 663 adolescents and young adults who died between the ages of 15 and 39. The study analyzed individuals with either stage 1 to stage 3 cancer and evidence of cancer recurrence or stage 4 cancer at diagnosis. The most common cancer diagnosis was gastrointestinal cancer.
The breakdown of the study’s findings is as follows: 11% of patients received chemotherapy within 14 days of death; in the last 30 days of life, 22% of patients were admitted to the intensive care unit; 22 % of patients had more than one emergency department visit; and 62% of patients were hospitalized.
“Older patients who know they are dying often do not want to receive such care, but we do not know if young people feel the same way,” Mack said. “Some may want to receive aggressive measures in hopes of living as long as possible. Physicians who care for adolescent and young adult cancer patients should ensure that young people understand what is ahead, especially if cure is not possible.”
She added that “physicians should open conversations about what is most important to young patients as they approach the end of their lives, so that care supports their wishes.”
Many times patients (and their surrogates) are ill-informed of a physician’s prognosis. To bring everybody up to speed, clinicians can assess care goals with patients. “Understanding what is important to young people at the end of life should be a research priority and a priority in clinical care,” Mack said.
“We should be asking patients what matters most to them as they face the end of their lives, what they are hoping for, and what they are worried about,” she said. “With this information, we can offer care that best fits with the values of individual patients.”
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