Over a quarter of adolescents, young adults with cancer who want to die at home do not
Key takeaways:
- Most AYAs with cancer who wished to die in hospitals did so, but one-fourth of those who wanted to die at home did not.
- More support for family caregivers could increase goal-concordant care.
More than one-fourth of adolescents and young adults with cancer who wished to die at home did not attain this goal, according to research published in JAMA Network Open.
Researchers conducted a retrospective cohort study that included adolescents and young adults (AYA; age range, 12 to 19 years) with cancer who died between 2003 and 2019. The cohort included patients treated at Dana-Farber Cancer Institute, Kaiser Permanente Northern California or Kaiser Permanente Southern California.
Investigators evaluated medical record documentation of discussions about preferred location of death. They also assessed actual location of death and its concordance with patient preferences.
The analysis included 1,929 evaluable AYA decedents, 1,226 (63.6%) of whom had documented conversations about preferred location of death. From this subgroup, 594 (48.5%) did not have a documented preference, 402 (32.8) stated a preference to die at home, 177 (14.4%) preferred to die in a hospital and 48 (3.9%) preferred inpatient hospice.
Of the 528 patients with a documented preference, results showed concordance between documented preference and actual location of death in 401 cases (75.9%).
The majority of patients who preferred to die in the hospital died in that setting (95.3%; n = 164 of 172). A lower percentage of patients who preferred to die at home died in that setting (70.7%; n = 224 of 317). Even fewer patients with documented preference to die in inpatient hospice died in this setting (33.3%; n = 13 of 39).
“It’s important to have conversations with patients and their families about preferred location of death, because otherwise it’s difficult to provide care that aligns with their goals,” researcher Oreofe O. Odejide, MD, MPH, associate professor of medicine at Dana-Farber Cancer Institute, told Healio. “This is an important area to address because, in our study, about one-third of patients did not have a documented discussion about preferred location of death.”
Healio spoke with Odejide about the rationale for the study, the importance of the findings, and strategies oncologists can employ to ensure more goal-concordant end-of-life care for AYA patients with advanced cancers.
Healio: Before this study, what had been known about end-of-life goals for AYAs with cancer?
Odejide: AYA patients who have cancer frequently experience multiple hospitalizations and admission to the ICU in the last month of life. Prior studies showed that a substantial proportion of this patient population dies in hospital settings. Although there was quite a bit documented in the literature about the type of care AYA patients with cancer received at the end of life, very little was known about their preferences regarding where they would like to die, or about the degree of alignment between their goals and the care they received.
Healio: How did you conduct the study?
Odejide: We conducted a large, retrospective medical record review of almost 2,000 AYA patients with cancer. We had a large team that reviewed the medical records of these patients and identified whether discussions occurred or were documented about the preferred location of death. If these discussions occurred and a preference was expressed, we evaluated whether those preferences changed with time and, ultimately, where the patients died. This allowed us to assess the degree of alignment between preferred and actual location of death.
Healio: What did you find?
Odejide: About two-thirds of the patients we studied had a documented discussion in their medical records about their preferred location of death. Almost half did not have a preference in their medical record. Among those who had a discussion and stated a preference, home was the most frequently desired location.
When we focused on the alignment between what people wanted and what happened, we found that among those who preferred to die at home, 70.7% died there. However, that means almost one-third did not realize their goal with respect to location of death. On the other hand, among those who preferred a hospital death, the vast majority died there.
Healio: What needs to be done to ensure more goal-concordant care around location of death?
Odejide: It is important to consider the needs of the 48.5% patients who had documented conversations about location of death but did not express a preferred location.
It may be that some of these patients may not have prioritized a particular location of death. However, others may have needed more conversation or support, because it can be a challenging issue to think through. We need to ensure that we have ongoing communication to help more patients express a preference.
Dying at home also requires substantial support to manage people’s physical and emotional symptoms, which may escalate at the end of life. There often is pain, shortness of breath and distress near the end of life, so it would be helpful to increase access to in-home care. Hospice and continuous in-home nursing care for those with escalating symptoms can help to support goal-concordant care for those who wish to die at home.
Healio: What are your next steps in research?
Odejide: The senior author of this paper, Jennifer W. Mack, MD, MPH, is leading a prospective study to examine the priorities of AYA patients who are living with cancer, and to understand their preferences for where they receive care as their disease progresses.
Healio: Is there anything else you’d like to mention?
Odejide: It’s important to note that family members often take on substantial caregiving responsibilities for their loved ones at home near the end of life. If caregivers don’t have adequate support at home, caregiving responsibilities can exert a high physical, emotional and financial toll. Perhaps another way to promote goal-concordant care for AYA patients with cancer is to consider interventions that provide practical and psychological support for family caregivers.
Reference:
For more information:
Oreofe O. Odejide, MD, MPH, can be reached at oreofe_odejide@dfci.harvard.edu.
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