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End-of-life care may be too intense among AYA patients with advanced cancer
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More than two-thirds of adolescent and young adult patients with advanced cancer receive at least one form of medically intensive care at the end of life, according to study results.
“That includes interventions like chemotherapy within the last 2 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, and hospitalization in the last month of life,” researcher Jennifer W. Mack, MD, MPH, co-director of the pediatric hematology/oncology fellowship program and senior physician at Dana-Farber Cancer Institute and assistant professor in pediatrics at Harvard Medical School, told HemOnc Today.
Jennifer W. Mack
Although adult patients who know they are dying usually do not want aggressive care, limited data exist with regard to adolescents and young adults (AYA).
Mack and colleagues sought to evaluate the rate of end-of-life care measures in AYA patients who died of cancer and received care within the Kaiser Permanente Southern California health system between 2001 and 2010. The study comprised 663 patients aged 15 to 39 years.
The investigators assessed end-of-life chemotherapy, hospitalizations, ED visits and ICU care.
Overall, 68% of the patients received at least one form of medically intensive end of life care.
The researchers found that 11% of patients received chemotherapy within the final 14 days of life. In the final month of life, 22% of patients received care in the ICU, 22% had more than one visit to the ED and 62% were hospitalized.
Patients who were hospitalized in the last month of life were more likely to receive chemotherapy during the last 14 days of life (OR = 2.29; 95% CI, 1.29-4.1). They also were more likely to undergo ICU care (OR = 5.66; 95% CI, 3.35-9.55) and have more than one ED visit (OR = 13.44; 95% CI, 6.70-26.96) in the last month of life.
However, researchers determined no association between ED visits and either chemotherapy use (OR=1.19; 95% CI, 0.68-2.11) or ICU care (OR = 1.35; 95% CI, 0.88-2.07).
“Rates of intensive measures among adolescent and young adult patients exceed proposed desirable benchmarks among older adults,” Mack and colleagues wrote. “In addition, rates for emergency department and ICU utilization among adolescent and young adult patients exceed those of Medicare decedents with advanced cancer in the last month of life.”
It remains unclear how these end-of-life decisions were unfolding for these patients, Mack told HemOnc Today.
“Older patients who know they are dying often do not want to receive aggressive care, which is associated with poorer quality of life near death,” Mack said. “However, we do not know if young people feel the same way. Some may want to receive aggressive measures in hopes of living as long as possible. More research is needed to understand what is important to young people at the end of life.
“In addition, 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, and open conversations about what is most important to young patients as they approach the end of their lives,” Mack said. “In doing so, we can ensure that care supports their wishes.”
A study like this could be the impetus for an investigation into end-of-life decision-making in this younger patient population, Archie Bleyer, MD, FRCP, clinical research professor at Oregon Health and Science University, wrote in an accompanying editorial.
“[This study] provides a needed stimulus to investigation, and peer-reviewed publication of studies, of end of life in adolescent and young adult patients with cancer,” Bleyer wrote. “As described by Weiner et al, health care workers are in particular need of training in palliative care of adolescent and young adult patients with cancer. Epidemiologic, developmental and psychosocial factors make the provision of palliative care especially challenging in adolescents and young adults. Critical instructional strategies include experiential learning, group didactic opportunities, shared learning among care disciplines, use of bereaved family members as educators and online learning.” – by Anthony SanFilippo
References:
Mack JW, et al. JAMA Oncol. 2015;doi:10.1001/jamaoncol.2015.1953.
Bleyer A. JAMA Oncol. 2015;doi:10.1001/jamaoncol.2015.2038.
Weiner L, et al. Clin Oncol Adolesc Young Adults. 2015;5:1-18.
For more information:
Jennifer W. Mack, MD, MPH, can be reached at Dana-Farber Cancer Institute, 450 Brookline Ave., Boston, MA 02215; email: jennifer_mack@dfci.harvard.edu
Disclosure: The researchers report no relevant financial disclosures. Bleyer reports a consultant and speakers bureau roles with Sigma-Tau Pharmaceuticals.
Perspective
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Christine A. Zawistowski, MD
This recent article highlights a cancer population that does not receive a lot of attention — adolescent and young adults (AYAs), defined as patients aged 15 years to 39 years. These individuals span the gap between pediatric and adult health care providers and centers. They also span the developmental trajectory — a time of rapid growth as a person and the hopes, dreams, needs, wants and desires of this group may not align with those of other well-studied populations such as children and older adults. As reported by Mack and colleagues, two-thirds of AYAs with cancer in this population received at least one medically intensive end-of-life care intervention during the last 30 days of life. These interventions included one in 10 receiving chemotherapy in the last 14 days of life, two in 10 receiving care in the ICU, two in 10 having more than one visit to the emergency department in the last 30 days of life, and two-thirds undergoing hospitalization in the last month of life. In fact, all parameters examined in this study fell outside of the proposed benchmarks for optimal end-of-life care among adults with cancer.
The question that naturally follows, then, is why this group seeks out these interventions when they are associated with poorer quality of life near the end of life. As the accompanying editorial by Bleyer points out, this population has a many-fold higher likelihood of receiving a diagnosis of invasive cancer than the more largely studied pediatric population. Overall, a diagnosis of cancer in AYAs ranks fourth in individual cancers for patient-years of life affected. This represents a large impact on the individual and society as a whole. The retrospective nature of this study makes it difficult to ascertain why these patients made the choices they did and which patients are at high risk for such care, and the authors are careful not to over interpret the results as such. The cohort selection of this study also makes it difficult to extrapolate the findings to the wider United States population.
Despite these limitations, by examining what care AYAs are receiving at the end of life, the authors are taking the important first step needed to create better tools that will enable clinicians to provide these patients with end-of-life care that is appropriate for their needs at this stage of life. Until we gain a more comprehensive view of what care these individuals receive and then explore why they seek that care, what is a clinician caring for one of these patients to do? It may be that the data we have about pediatric and older patients does not apply to this group, and for now, simply providing patient-centered end-of-life care is the best course of action to take. This can be done by not only exploring the patient’s understanding of the situation and potential outcomes, but also by diving deeper into that person’s fears and hopes, the trade-offs that they are willing or not willing to make, and then taking the course of action that best serves that understanding. This course of action may not meet the proposed benchmarks for optimal end-of-life care, but until we know what those benchmarks are for this population it is the best way to do right by our patients.
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