Abstract
Introduction
Palliative care is a component of high-quality oncology care for patients of all ages.1–6 Adolescent and young adults (AYAs) with cancer may especially benefit from palliative care, as they report disproportionately worse quality of life and symptom burden when compared with other age groups.7,8 AYA survivors of childhood cancer report greater psychological distress than their peers. 9 AYAs with cancer also generally face poorer survival outcomes as compared with younger patients. 10 Thus, clear communication about prognosis, decision support, and symptom management are all highly relevant to this age group. Developmental characteristics specific to this age group, such as growth in autonomy and personal identity, may also contribute. Importantly, AYAs endorse a willingness to meet with specialty palliative care services early in their treatment trajectory. 11 In a study of pediatric patients, including those in early adolescence, less than 2% expressed opposition to early palliative care involvement, and over 40% indicated perceived benefit of palliative care involvement for the management of distressing symptoms. 11 When palliative care is integrated into the care of an AYA with cancer, symptom management, patient/caregiver satisfaction, quality of life and survival all improve, while intensity of end-of-life care and health care costs decrease.12–19 Despite the tremendous need and acceptability of palliative care services, there remains a scarcity of empirical research specific to palliative care in AYA oncology. 20 Altogether, this highlights palliative care as a critical element of high-quality cancer care for the AYA patient and for the ongoing need for work in this space.
Guidelines
Comprehensive palliative care offers an essential whole-person approach to optimizing quality of life through symptom management, communication, decision-making, and bereavement support. 21 Early introduction to palliative care is recommended for all patients with advanced cancer, leveraging both primary and specialty palliative care along the disease trajectory, concurrent with cancer-directed therapy, and individualized to the patient’s specific needs.4,6,22 High-quality palliative care includes regular assessment of physical and psychological symptoms, provision of spiritual care, clear disclosure and assessment of prognostic understanding, early developmentally appropriate advanced care planning, and caregiver support provided along with regular oncology care. 23 For AYAs with cancer, specialty palliative care should be engaged to provide support for individuals with poor prognosis, refractory or complicated symptoms, or complex social situations. 20 Palliative care of the AYA with cancer should be individualized to the person and adapted to the patient’s evolving needs over time. AYAs have their own preferences about their care 24 ; however, preferences about engagement in decision making may change with time and point in the disease trajectory. 25 Family members and friends play a large role in the care of young people with cancer. Caring for children and AYAs with cancer requires dedicated attention to parents and additional caregivers, siblings, and other important support people. Family-centered care can improve parental distress, trust, and care satisfaction. 26 Parents who receive higher quality prognostic information report less regret after a child’s death. 27 Spirituality remains important to AYAs and may take a different shape than what is traditionally considered in the care of adults with cancer.28,29 The National Comprehensive Cancer Network guidelines for AYA oncology are the only published guidelines specifically addressing palliative care in this population and reinforce the importance of engaging AYAs in discussions about death and dying as well as the importance of offering opportunities for both preserving normalcy and exploring goals, dreams, and legacy desires. 30 Perhaps most importantly, prior work has demonstrated that AYAs want to have these important conversations with their care team. 31
Barriers, Strategies, and Resources and Recommendations
Despite growing support for palliative care in oncology, ongoing opportunities exist for the improvement of care of AYAs with cancer. Research dedicated to the care of AYAs with cancer remains a critical need. Training of clinicians with a focus on the unique needs of the AYA with cancer is necessary. Access to concordant care and outpatient support services (e.g., hospice, home nursing) is highly variable and dependent on the patient’s age. Palliative care delivery in AYAs is dependent on the location of care, with young adult patients receiving care at non-specialty cancer centers disproportionately receiving higher intensity end-of-life care. 32 Numerous advanced care planning and communication aids have been published for use with children and AYAs and can be helpful tools for clinicians to introduce these challenging discussions (see Table 1). 3 Patient-reported outcomes may be another helpful tool for the systematic assessment of symptoms and function and can be used for improvement of both research and clinical care. 33 Altogether, advancement of palliative care in AYAs with cancer remains a critical need, and our hope is that this may serve as a catalyst for generating ongoing progress in this field.
Resources for Palliative Care in AYA Oncology
AYA, adolescent and young adults.