Table 4.
Learner goals and objectives for an AYA palliative care cancer rotation
| Goals | Objectives |
|---|---|
| Development | Describe the typical sequence of events in cognitive and psychosocial development from early adolescence through young adulthood |
| Describe physiologic changes normal for this population with recognition of developmental delay or early maturity | |
| Recognize discordant timing and tempo of psychosocial development (including formation of identity) secondary to cancer | |
| Describe protective factors that promote AYA development and describe risk factors for potential delay in AYA development | |
| Understand the normal range of AYA stress and the additional stress chronic illness imposes | |
| Evaluate the impact of cancer on developmental goals | |
| Decision-making and disclosure | Support the AYA in discovery of his/her core values and cultivate insight into self-awareness for AYA and family |
| Present options, consequences of options, and how personal/family values may be enabled in choices | |
| Consider the ethical principles involved in decision-making and disclosure | |
| Investigate how different cultural or religious backgrounds may impact decision-making or disclosure | |
| Determine AYA patient's decisional control preference (keep, share, defer) and preferences for inclusion in decision-making conversations (self, parents, peers, siblings, certain clinicians, team members) | |
| Provide opportunities for decision-making, beginning with simple choices toward greater complexity | |
| Encourage family to enable and support AYA decision-making | |
| Host advanced care planning meeting with the adolescent and his/her chosen proxy | |
| Support the AYA in discovery of his/her core values, and cultivate insight into self-awareness for AYA and family | |
| Symptom management | Assess for nausea and pain with plan for monitoring trends in medication use |
| Assess level of sedation | |
| Screen for sleep disorders such as insomnia or bad dreams that may be indicative of underlying emotional/existential distress | |
| Provide AYA and family with clear explanation of medication options and potential side effects as well as drug-alcohol interactions | |
| Communicate any medication changes with AYA | |
| Effective communication | Learn about AYA's information and communication preferences, and discuss role for communication proxy |
| Provide developmentally informed, direct, honest, compassionate communication approach | |
| Provide explanation of confidentiality, and ask for permission to share information with family members prior to sharing information | |
| Promote communication between AYA and his/her support network to the preferences of the AYA | |
| Discuss supportive goals for adherence and supportive needs and resources for enablement of treatment adherence and appointment attendance | |
| Psychosocial issues | Assess factors in AYA's home, school, religious center, and community that are associated with potentially helpful or harmful outcomes |
| Inquire about AYA and family school/vocational trajectories | |
| Discuss with AYA the support available as structural models (social networks) and functional models (perception of quality of relationships) | |
| Monitor changes in social environment, and assess these changes within the context of the AYA's strengths and vulnerabilities | |
| Provide family members with information about psychosocial support and counseling | |
| Supportive care | Provide AYAs with anticipatory guidance regarding nutrition and physical activity |
| Provide and incorporate family support for balanced nutrition and physical activity. Ensure nutritional advice and physical activity guidance are shared with the AYA and their family. | |
| Inquire about preferences for complemenary and alternative medicine | |
| Ask about drug and alcohol use, and provide appropriate counseling and referral as needed | |
| Existential | Inquire about spiritual or religious beliefs in a patient-sensitive manner |
| Refer AYAs who express existential struggle to resources or activities relevant to the AYA's personal preferences | |
| Peer support | Maintain a list of AYA online and in-person support groups and recreational programs |
| Evaluate changes in peer support, and offer ways to maintain healthy relationships | |
| Mental health | Screen for depression, anxiety, and suicide risk with appropriate management plans for AYA with mental health problems and mental health referral |
| Incorporate inquiries about sadness and fear into normal conversations with AYAs | |
| Reproductive health | Discuss intimacy, sexual development, and sexual identity |
| Discuss ways to be intimate aside from sexual intercourse | |
| Inquire about behaviors associated with the risk of sexually transmitted diseases, and provide patients with health guidance regarding sexual decision-making | |
| Consider topics of fertility, contraception, and adoption, and issues related to sexual dysfunction | |
| Genetic | Familiarize with resources on constitutional genetic syndromes and inherited cancer risk |
| Financial | Link to financial resources and legal resources/advocates for coverage for AYAs, as needed |
| Refer to transportation assistance programs, as needed | |
| Familiarize with health insurance policy coverage, and recognize gaps in coverage | |
| Learn about the transition for AYAs to separate insurance policy from parental policy | |
| Investigate the financial aspects of hospice qualification and enrollment | |
| Multidisciplinary care context | Explain the professional role of each palliative care team member |
| Attend consultation with a team member from each field to learn more about the perspective of that field | |
| Make referrals to team members, and learn about the referral process/outcome | |
| Therapeutic alliance | Express value of AYA in all interactions and respect the AYA's dignity |
| Strive to support meeting important goals as defined by the AYA | |
| Help AYA's family and friends respect AYA's autonomy while remaining a supportive network | |
| Empower AYA with skills to effectively communicate their autonomy, wants, and needs with their family and friends |
Abbreviation: AYA, adolescent and young adult.