Aug 1, 2021
This podcast describes the findings from a population-based retrospective decedent cohort study which suggest that palliative care involvement may be associated with a decreased need for high intensity of care during the final weeks of life in adolescents and young adults with cancer.
This JCO Podcast provides observations and commentary on the JCO article “Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults with Cancer: A Population-Based Cohort Study” by Kassam et al. My name is Erica Kaye, and I am Director of the Quality of Life and Palliative Care Research Division at St. Jude Children’s Research Hospital in Memphis, Tennessee, USA. My oncologic specialty is pediatric palliative oncology.
In this paper, the authors aim to evaluate the prevalence and predictors of high-intensity end-of-life care in adolescents and young adults with cancer in Ontario, Canada, as well as assess the impact of palliative care involvement on intensity of care received at end of life. This topic is timely and important. Growing evidence demonstrates that adolescents and young adults with cancer, defined by the National Cancer Institute as patients diagnosed between the ages of 15 and 39, face a unique set of circumstances that may adversely impact their end-of-life experiences. Several single-institution studies in the U.S. have suggested that adolescents and young adults with advanced cancer disproportionately receive high intensity medical care in their final month of life compared to children or older adults, and these findings recently have been replicated in population-level studies in California and New York. These observations raise concerns about exposure of a vulnerable population to toxicity from high intensity care at a time when such interventions are less likely to offer meaningful benefit. However, these studies had several notable limitations: some involved only insured patients; others presented data only from inpatient end-of-life care; and none evaluated the impact of palliative care provision on the intensity of end-of-life care for adolescents and young adults with cancer. Moreover, findings from U.S.-centric data sets may not be generalizable to other countries.
In this study, the authors assembled a retrospective decedent cohort of adolescents and young adults with cancer who died between 2000 and 2017 in Ontario, Canada using a provincial registry linked to population-based health-care data. Predicated on previously published validated metrics, they used a primary composite measure for high-intensity end-of-life care that included receipt of intravenous chemotherapy less than 14 days from death; more than one emergency department visit; and more than one hospitalization or intensive care unit admission less than 30 days from death. Secondary outcomes included measures of the most intensive end-of-life care, such as intensive care unit admission within 30 days of death, mechanical ventilation within 14 days of death, and death in the ICU, as well as palliative care physician involvement. Predictors of outcomes were determined using regression models.
In a cohort of more than 7,000 adolescents and young adults with cancer across Ontario, authors found that approximately 44% experienced high-intensity end-of-life care – double the rate for adults and slightly higher than the rate for children in the region. This percentage is lower than that seen in single-site and population-level studies in the U.S., however lack of consistently defined high-intensity end-of-life indicators for adolescents and young adults with cancer make it challenging to compare findings across studies.
Importantly, adolescents and young adults with hematologic malignancies were at highest risk for receipt of high-intensity care at the end of life in Ontario, affirming findings seen across pediatric and adult populations in different countries. Some hypothesize that unique pathologies specific to hematologic malignancies may increase the risk of experiencing higher intensity end-of-life care. For example, a patient with refractory leukemia often requires frequent blood transfusions to prolong life and optimize quality time; this can be challenging to coordinate in the outpatient setting and may necessitate inpatient hospitalizations at the end of life. In both the U.S. and Canada, continuation of transfusion support often precludes hospice enrollment, further preventing patients from receipt of subspecialty palliative care in the home. In this context, legislation to support concurrent provision of palliative and hospice care with cancer-directed therapy may have the potential to mitigate high-intensity end-of-life experiences for this vulnerable patient population.
This study also found that palliative care physician involvement substantially reduced the odds of adolescents and young adults with cancer receiving high-intensity end-of-life care, including the most intensive experiences such as mechanical ventilation and dying in the intensive care unit. Palliative care physicians may lessen intensity of end-of-life care by promoting conversations about goals of care and advance care planning, coordinating complex medical care in the community, and providing real-time symptom management to decrease emergency visits or hospitalizations. However, further research is needed to explore these hypotheses. Ultimately, this study provides compelling evidence that palliative care involvement may lessen the risk of high-intensity end-of-life care in adolescents and adults with cancer. Unfortunately, universal access to subspecialty palliative care remains challenging, particularly in rural regions. Disparities in access to hospice and palliative care services for racialized communities remain deeply problematic as well. This study supports the need for institutional and regional programs and policies to provide equitable access to palliative care for adolescents and adults with cancer.
Strengths of this study include its population-level design, large health services dataset, and use of relatively standardized indicators for defining high-intensity end-of-life care. Study limitations include its retrospective design, which inherently precludes causal inference. Additionally, involvement of a palliative care physician was used as a proxy for integration of subspecialty palliative care; however, subspecialty palliative care is an interdisciplinary field in which care may be provided by non-physicians, and the study did not account for this phenomenon.
Lastly, the study is predicated on certain assumptions about the negative ramifications of high-intensity end-of-life care. Notably, certain experiences categorized as high-intensity care, such as more than one hospitalization during the final month of life, may not be experienced as high-intensity or burdensome by patients or families. An adolescent patient may wish to be hospitalized on multiple occasions to optimize comfort at the end of life. Or a family may request hospitalization for respite, or to protect siblings from seeing suffering at end of life. Although technically high-intensity, these interventions also may represent goal-concordant comfort care, and further research is needed to determine best practices for optimizing care that aligns with the goals of adolescents and young adults at end of life.
This concludes this JCO Podcast. Thank you for listening.