It's More Difficult..'

Clinicians' Experience Providing Palliative Care to Adolescents and Young Adults Diagnosed With Advanced Cancer

Jonathan Avery, PhD; Arielle Geist; Norma Mammone D'Agostino, PhD; Sarah K. Kawaguchi, MD; Ramona Mahtani, MD; Paolo Mazzotta, MD, MSc; Pamela J. Mosher, MD, MDiv; Ahmed al-Awamer, MBBS, MHSc; Alisha Kassam, MD, MPH; Camilla Zimmermann, MD, PhD; Mahsa Samadi, MD; Seline Tam; Amirrtha Srikanthan, MD, MHSc; Abha Gupta, MD, MSc


J Oncol Pract. 2020;16(1):e100-e108. 

In This Article


In this qualitative study, we have described the difficulties experienced by HCPs while providing care for AYAs with advanced cancer. Participants described challenges with engaging AYAs/families in a palliative approach to care, an increased sense of tragedy treating this group of patients, and the emotional proximity experienced when caring for them. The results of this study offer important insights that may inform the development of dedicated training for HCPs involved in palliative care for AYAs and future clinical approaches for AYAs with advanced cancer.

Previously, Thompson et al[8] reported on the discomfort of HCPs in engaging with AYAs around palliative care. The findings from the current study expand on this work. The sense of tragedy experienced by HCPs illustrates that it is more upsetting when someone younger is diagnosed with advanced cancer, possibly due to the potential years of life lost. In addition to this sense of tragedy, there was a stronger sense of relatability (emotional proximity) with this population. This proximity intensified the sense of tragedy because of memories HCPs possess of their own younger years or their children's young adulthood and reflects countertransference, a theory that has been used to explain why HCPs may be more inclined to administer tumor-directed therapy to AYAs close to death.[22]

Countertransference describes how certain emotional and behavioral reactions from HCPs toward their patients originate from previous life experiences.[23] In our study, participant reactions to their AYA patients may have originated from their own experiences as young adults or as parents of young adults. Navigating, enduring, and experiencing the trials and tribulations of being a young adult, and/or being a parent of a young adult, are significant life milestones that appear to influence the patient/provider interaction around the delivery of palliative care with our sample of participants. This theory of countertransference could explain HCP emotional burden and the reluctance in approaching palliative care with AYA patients diagnosed with an advanced or incurable cancer. Many participants stated that they refrained from using the term palliative because of its association with death and dying and were hesitant to make referrals to palliative care because HCPs are keenly aware of how hard it is for AYAs to hear about palliative care in addition to the emotional burden that comes with caring for AYAs. These dynamics merit additional investigation to explore how HCP hesitations around introducing and discussing palliative care may impact the well-being of HCPs and the acceptance of palliative care among AYAs. The exploration of these dynamics could also illuminate specific communication techniques (ie, what words to use and how much time is needed) to better communicate palliative care to AYAs and their families. Research on identifying ways to communicate palliative care more effectively is needed and could address the challenges HCPs expressed in helping AYA/family acceptance of palliative care.

HCPs were also able to identify the reversal of independence for AYAs, which caused conflict within the family. This tension occurs with patients of all ages,[24] but, intertwined with the emotional distress of facing premature death, becomes all the more problematic. Participants expressed uncertainty and hesitation regarding how to broach the need for palliative care with AYAs and how to involve the family. Family-centered care is a concept taught thoroughly in pediatric disciplines,[25] as well as in palliative care,[26] which includes continuous family involvement and may be a theme that deserves more attention and space within adult oncology training programs.

This study is limited to the participants and researchers involved in this work. Because only one person did most of the coding, the inclusion of multiple perspectives in the analysis did not occur, limiting findings to the views and perspectives of the primary author. In addition, participants were only recruited from two tertiary hospitals located in downtown, Toronto, Canada. The experience of providing palliative care to AYAs could be different in other hospitals and regions. Furthermore, the use of convenience sampling leaves the possibility of selection bias.[19] However, the fact that similar themes were noted across disciplines and no notable differences were found across different ages of participants speaks to the commonalities in the experience and the transferability of findings. Thus, this qualitative descriptive study provides a glimpse into the HCP experience introducing and providing palliative care to AYAs diagnosed with advanced illness and merits additional exploration, given the identified impact on HCP.

In summary, we provided an in-depth analysis of HCP experience of the practice of AYA palliative care. Providers articulated powerful and meaningful themes regarding difficulties with engaging patients and families in palliative care, the tragedy and distress felt when caring for this population, and the emotional connection with the AYA population. The last theme may relate to the impact of countertransference. Understanding AYA and family perceptions of palliative care will be an important corollary to this study, and this research is currently underway. Furthermore, formal training programs in AYA oncology with a focus on palliative care deserve increased attention and integration. For example, during interviews, participants spoke about the types of supports they would like to see to better equip them to provide palliative care to AYAs. This will be explored as an independent paper. In addition, there is a body of evidence that uses different techniques to address countertransference, such as play to help therapists who treat children and young adults.[27] Exploring this literature (a scoping review) would be valuable to see if any interventions have been developed for oncology practitioners who work with AYAs with advanced cancer. These interventions can be used to develop AYA-specific education and resources to improve quality of life for patients, their families, and HCPs caring for AYAs with advanced cancer. On the basis of our findings, AYA-specific education and resources are needed.