In fact, AYAs living with cancer report that the “availability of health providers who know about treating young adults with cancer” is problematic, and rate this as the second most important care need.29 Similarly, more than half of subspecialty resident graduates find training in adolescent medicine inadequate for clinical practice.30,31
Furthermore, more than half of graduating medical students feel ill prepared for end-of-life (EOL) interactions,32 which is not surprising given that the average medical school curriculum contains limited hours of formal palliative care training.33
Similar gaps in palliative care education are seen in physician-assistant and nurse practitioner programs. As a result of limited palliative training backgrounds and current curative-directed cultures, clinicians may be delivering cancer-directed care to AYAs with a low level of perceived competence or knowledge in the area of palliative care.
The limited education provided in this area to future providers may reduce their sense of expertise,34 thereby making it difficult to comfortably approach the palliative care topic with patients and in turn reduce the patient/family benefit from these services.
Although training programs for both adult and pediatric palliative care are expanding, training in AYA palliative care falls in a void between the adult and pediatric training domains.
Medical trainees recognize the existence of a “hidden curriculum” in which the psychosocial processes of terminal illnesses and dying may be underaddressed and minimized rather than explicitly taught as educational objectives.35
Recognition of inadequate formal palliative training programs warrants urgent attention to early integration of palliative care as part of professional training.
Inadequate education for clinicians, that is, one that does not “fit” the clinical and academic milieu of care, is a barrier to effective integration.
An educational and conceptual model that recognizes contextual barriers, addresses the personal and professional development of learners, and teaches palliative care concepts in a strategic way has the potential to best improve AYA outcomes (Figure 1).
(To view a larger version of Figure 1, click here.)
Who are AYAs? Developmental considerations
The priorities of palliative care are similar for AYAs and adults: ongoing assessment of goals of care, provision of expert pain/symptom assessment and management, appraisal of spiritual and emotional needs, sensitive communication (including advance care planning), and family bereavement care.36
However, the developmental, psychosocial, ethical, and existential differences in life stage of AYAs warrant specific training for palliative care clinicians (Figure 2).
The term “AYA” is not consistently defined.1 The AYA Oncology Progress Review Group refers to patients aged 15–39 years at the time of initial cancer diagnosis.5 The AYA age spans the gap between pediatric and adult health-care providers and centers.28
It also spans the developmental trajectory, and thus, health providers benefit from familiarity with normative development.37
For example, AYAs’ physical development may be delayed or expedited by the cancer diagnoses, depending on nutrition status, hormonal balance, and treatment influence. Emotional development may be altered in negative ways, such as learned decisional passivity because of overprotective parenting or social anxiety due to extended social isolation or a shrinkage in social network.38