Adolescents and young adults dying of cancer choose to receive aggressive treatment in their final days, researchers report.
In a retrospective study published online July 9 in JAMA Oncology, more than two thirds of adolescents and young adults with terminal cancer utilized one or more aggressive interventions in the last month of life.
These measures included chemotherapy in the last 2 weeks of life, being seen in the emergency department two or more times in the last month of life, and being admitted to the hospital or the intensive care unit (ICU) in the last month of life.
"Understanding if this care was inappropriate is complex," lead author, Jennifer W. Mack, MD, MPH, a pediatric oncologist from the Dana Farber Cancer Institute and Boston Children’s cancer and Blood Disorders Center, Boston, Massachusetts, told Medscape Medical News.
"There's a lot that we don't know. For instance, we don't know what they understood about their prognosis, we don't know whether these were informed decisions, we don't know what kind of care they wanted. If you look at older adult patients who know they are dying, generally, not always, but generally, they do not want to receive aggressive measures," Dr Mack said.
"But young people may be different. They may be more willing to accept these heroic measures with a goal of living as long as they can, because they're so young and their lives are being cut so short," she said.
"These aggressive measures in older adults are associated with poorer quality of life near death, and it makes me worry that young people are experiencing more suffering at the end of life because of these choices," Dr Mack said.
Together with researchers from Kaiser Permanente Southern California, in Pasadena, Dr Mack measured the use of intensive care, emergency department, chemotherapy, and hospitalization in the last month of life in 633 patients aged 15 to 39 years who died of cancer between 2001 and 2010.
All patients were from southern California and were treated in the Kaiser Health Plan, which serves approximately 3.7 million individuals.
The population was diverse, almost a third were Hispanic, and just more than half were white.
The leading cause of death was gastrointestinal cancer. The patients had either been diagnosed with stage IV cancer or had a recurrence of cancer.
In addition, an initial review of a subset of 111 patients found that death had been anticipated in 98% of cases.
The study found the following:
11% of patients (72 of 663) received chemotherapy within 14 days of death.
In the last 30 days of life, 22% of patients (144 of 663) were admitted to the ICU.
22% (147 of 663) had more than 1 ED visit.
62% of patients (413 of 663) were hospitalized.
Overall, 68% of patients, (449 of 663) received at least one medically intensive end-of-life care measure.
"These findings make me want to learn more about the decisions that are being made that lead to this kind of care," Dr Mack said.
"The clinicians, the families, the patients themselves were making the best decisions at the time, without knowing exactly when death would occur, but at the same time, I think we should help these patients move toward measures that are more focused on quality of life and comfort at the end of life that might be helpful for some of them," she said. Perhaps not every patient would want that, but still, the finding that two thirds of patients had at least one medically intensive end-of-life care measure is high," she added.
Dr Mack added that she wants to continue doing research in this area to understand why this is occurring.
The message from the study is also a reminder to have discussions with this patient demographic about their end-of-life care wishes.
"I'm a pediatric oncologist myself, and it is a reminder to me that it is so important to have these conversations with young people about what we believe is ahead for them and to help them make the most informed choices and choices that reflect their values," she said.
“Also, for patients and families who may be aware of this research, I would want them to begin these conversations themselves as a family with their loved ones, their doctors and nurses, so that these kinds of decisions can be made openly, instead of these types of care unfolding without joint decision making," Dr Mack said.
Young Have Different Values
In an accompanying editorial, Archie Bleyer, MD, from Oregon Health and Science University, in Bend, writes that adolescents and young adults "undoubtedly have different values for end-of-life care as compared with older adults."
This population typically have young children, or parents, or both to support, as well as siblings, friends, classmates, and coworkers. In addition, some have just purchased a new home and have other responsibilities to fulfil, Dr Bleyer writes.
"A majority of adolescents with cancer prefer to discuss end-of-life decisions early and to die at home, and few were uncomfortable discussing death. This finding is likely even more true for young adults, who in general have a greater psychosocial and family burden. As suggested by the results of Mack et al, this age-specific need is generally not being met for adolecents and young adults with cancer," he writes.
In an interview with Medscape Medical News, Dr Bleyer reiterated these views.
"A half century ago, oncology professionals were reluctant to talk about dying with children. It took decades for us to learn that children not only benefited from such discussions, conducted with their parents and in terms they could understand, they also were relieved of the burden to have to protect their parents from having to discuss end-of-life care with them," he said.
"As described by Mack and her colleagues, we seem to now be at the same place, years later, with AYAs [adolescents and young adults]. Yet, few AYAs with cancer do not want to discuss EOL decisions early and to die at home, and few are uncomfortable discussing death. We are overdue in applying lessons learned years ago from children with cancer to AYAs facing imminent end of life," he said.
The study was funded by the Cancer Research Network/National Cancer Institute. Dr Mack and Dr Bleyer report no relevant financial relationships.
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Cite this: Young People Opt for Aggressive Treatment at End of Life - Medscape - Jul 09, 2015.