Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer

Abstract

PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.

Quality of End-of-Life Care Among Adolescents and Young Adults With Cancer

“…Previous work has identified the complexities faced by AYAs when considering hospice and location of death, including barriers to transfusions in hospice and concerns about the impact on young family members in the home. 28,29 Alternative models of care delivery, such as concurrent care available to children and adolescents or home hospice transfusion models, may better serve some AYAs, whereas for others, hospital-based care may best balance complex needs. 30,31 In addition, this study identified psychological and spiritual support as areas where supportive care can be maximized regardless of patient goals of care.…”

Palliative Care in Adolescents and Young Adults With Cancer

“…56 This is concerning because there is also evidence that AYAs with cancer prefer home-based, lessintense, or natural deaths. 43,57 The survival gap, high symptom burden, psychosocial and communication challenges, and concerns about goalconcordant care at the end of life make PC especially important for AYAs with cancer. One study suggests that oncology and PC clinicians agree that providing PC to AYAs with cancer can be particularly challenging.…”

“…56 This is concerning because there is also evidence that AYAs with cancer prefer home-based, less-intense, or natural deaths. 43,57…”

Improving supportive, palliative and end of life care for teenagers and young adults with cancer in adult haematology services

“…A fully informed and equipped workforce enables young people to live well with advanced cancer and also extends to improving the experiences of caregiver bereavement [52 ▪ ]. Addressing communication and relational challenges between T/AYAs, their parents, and their clinical teams, for example, could lessen the risk of complicated parental grief [17 ▪ ,53–55], and should be a component of pre-bereavement considerations [56].…”