Better End-of-Life Options Are Needed for AYA Patients With Advanced Cancer

Oroefe O. Odejide, MD

Most adolescent or young adults with advanced cancer prefer to die at home, according to results of a qualitative interview study published in JCO Oncology Practice.¹ Unfortunately, the desire of many of AYA patients is not realized with up to two-thirds of AYAs passing away in the hospital setting, underscoring an unmet need regarding death preferences in this population.

“Our data suggest a preference for home death for most AYAs with advanced cancer,” wrote Oreofe O Odejide, MD, assistant professor of medicine and medical oncology at the Dana-Farber Cancer Institute, and co–investigators. “Unfortunately, this preference is aspirational for many, as the majority die in hospital settings. To ensure that the EOL [end-of-life] experiences of AYAs align with their preferences, robust home-based services for symptom control and logistical/psychosocial support for family caregivers and siblings are imperative: we need innovative strategies that close the gap between preferred and actual location of death to achieve high-quality EOL care for AYAs with cancer.”

In the US, more than 9000 AYA patients die of cancer every year, and existing data suggests that EOL care for may be less than optimal in this population. High-intensity care, frequent hospitalizations, intensive care unit admission, and chemotherapy in the last month of life can all contribute to negative EOL experiences. These are more likely to occur for AYA patients than with older adults or young children. Moreover, most AYA patients die in the acute-care setting. Findings from a 2021 study published in Cancer estimated that 69% of AYA patients pass away while admitted.²

Investigators sought to better understand patient preferences—specifically, preferential EOL locations.1 Therefore, they conducted quantitative interview studies of AYA patients with advanced disease and compiled responses along with the responses of their family caregivers and clinicians. Interviews occurred between December 6, 2018, and January 5, 2021. Eligible participants were identified from clinical lists, administrative databases, and clinician referrals. The study included a total of 80 individuals: 23 patients, 28 family caregivers, and 29 clinicians.

The interviews revealed that multiple factors influence an AYAs choice of death location. The driving rationale comes from a want to be around family and friends but other reasons for include a desire for comfort, a sense of normalcy, and wanting to be protected from the isolation of being in the hospital.

One participant stated: “Rather than being in a situation where my last days are spent on a hospital bed and my parents and my loved ones have to come to the hospital, I would rather kind of share those experiences in the last days in a home – I would rather pass at home.”

External factors, however, may influence an AYA patient’s decision, and persuade them to elect an in-hospital death. One reason for this may be that there are more logistical considerations necessary for an at-home death. Caregivers were more likely to recognize these logistical considerations, which include need for pain and symptom management.

One caregiver described circumstances surrounding a patient that would influence admission to a hospital being preferential. “Had she experienced a tremendous amount of pain, we would have sought another way of you know either getting continuous IV [intravenous] morphine…or we would have brought her back to the hospital,” the caregiver responded. “And although she wouldn’t have wanted that decision, the pain decision would have superseded the decision to keep her home.”

A clinician backed that sentiment, noting, “Most [individuals] feel it would be nice to be at home, but then the question is: at what cost?… The symptom burden is high here—few [individuals] that I’ve met are willing to be at home at the cost of risk of symptom control.”

Moreover, there is the desire of the caregiver to preserve the home as a place “untouched” by death, particularly for the benefit of a sibling, which may persuade AYA patients to choose a hospital death. One caregiver acknowledged that her family did not want to “mar” their home space and did not want the patient’s younger sibling to witness her brother’s death.

Although most AYAs expressed that they would prefer to pass away at home, they also acknowledged a family member preference and, consequently, they expressed concern about imposing additional trauma on their family members if they choose to stay at home. The desire to experience EOL comfort for themselves, and the need to not to be a burden to their family, created a tension that was identified in the study. Results noted that many AYAs chose a hospital-death specifically to limit the potential burden on their family members.

Lastly, the need for hospice care is at odds with the desire to pass away at home. Although hospice care can be useful in facilitating an at-home death, there are limitations, and some families may opt to bring their loved one in for inpatient hospice care despite patient preferences. For example, a bereaved caregiver reported that their loved one died in a hospice house rather than at home because of inability to access the high level of care needed to facilitate a home death.

Another stated, “One thing I wish is that in-home hospice services would be able to do 24-hour care, not nursing care, but [provide an] aide to stay with the patient. Because I had to put him in a hospice house because he couldn’t die at home because I couldn’t care for him anymore. That was hard for me.”

Although at-home hospice services represent an interesting tactic to try and make at-home deaths feasible, gaps still remain in this type of care and will need to be expanded if families are truly able to take advantage of these services rather than inpatient hospice. Similarly, robust home-based services for symptom control and logistical/psychosocial support for family caregivers and siblings are imperative and warrant further investigation.

Given the stress that surrounds EOL experiences, seeking invocative solutions to improve the level of comfort for these patients is necessary, the authors concluded.

References

1. Odejide OO, Fisher L, Kushi LH, et al. Patient, family, and clinician perspectives on location of death for adolescents and young adults with cancer. JCO Oncol Pract. Published online August 18, 2022. doi:10.1200/OP.22.00143
2. Coltin H, Rapoport A, Baxter NN, etc. Locus-of-care disparities in end-of-life care intensity among adolescents and young adults with cancer: a population-based study using the IMPACT cohort. Cancer. 2022;128(2):326-334. doi:10.1002/cncr.33926.