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

Disclosures

J Oncol Pract. 2020;16(1):e100-e108. 

In This Article

Background

When adolescents and young adults (AYAs)—defined in North America as people between the ages of 15 and 39 years[1]—are diagnosed with cancer, their quality of life is distinctly affected because of their life stage and social development.[2] A diagnosis of cancer disrupts normal life trajectories related to emerging independence, self-image, social relationships, transitions between school and work, career establishment, and families.[1,3] Age-related challenges are even more profound in the setting of advanced, incurable disease requiring palliative care. AYAs with advanced cancer face multiple difficulties throughout the course of their treatment. These difficulties include challenges with discussions around forgoing the use of life support, family-centered disclosures about incurable disease, and accepting the possibility of death and dying at a time in life normally dedicated to establishing autonomy and looking ahead to the future.[4] However, since AYAs make up only 4% of the adult cancer population,[5] and even less of the advanced cancer population, most institutions lack dedicated palliative care programming or resources for this group.[6]

Despite the proven benefits of palliative care in improving cancer patients' quality of life,[7] previous studies have found that HCPs are reluctant to engage in discussions about palliative care with AYAs and are, moreover, uncomfortable conducting these discussions.[8,9] Reasons for this reluctance and discomfort include a lack of AYA-focused training,[10] absence of guidelines specific to AYA palliative care,[11] a perceived lack of time to invest in care-planning discussions, and strong emotional responses when having these discussions.[12–14]

Given the reported challenges in providing AYA palliative care among HCPs, the purpose of this study was to explore the experiences of HCPs involved in introducing and providing palliative care to AYAs with advanced cancer and their families. The objectives were to identify how HCPs describe the experience of providing palliative care to AYAs diagnosed with advanced cancer and to characterize the unique challenges they experience.

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