The fields of adolescent medicine, oncology, and palliative care recognize that the best care of patients occurs in the context of multidisciplinary teams with expertise in biological, emotional, psychosocial, sexual, educational, developmental, and practical issues related to AYA patients.64
Although trainees may have spent time with experts from other disciplines, treatment often uses a “parallel play” approach, with each team member bringing his or her knowledge niche rather than engaging in a truly meaningful, interdisciplinary interaction.
Trainees benefit from structured exposure to the unique vocabulary, diverse skill sets, and common vision brought together by diverse members of palliative teams.
Exposure of trainees to problem solving within teams, including the task of working through tensions as a respectful and functional unit, provides trainees with a valuable career foundation.65
AYA patients value communication styles that are respectful, clear, and nonjudgmental.66 Information should be provided in a time frame that allows adequate time to process and rediscuss.67
Compassionate, sensitive, and honest communication can reduce AYAs’ anxiety and fear while offering support.68 Trainees of the millennial generation may have the opportunity to update the palliative care team on new modes of information delivery, as AYAs have expressed a preference for electronic information in addition to written information.69
Association with AYA patients over longitudinal time periods allows trainees to develop open, communicative relationships with them, which is essential both for building patient trust and for trainee development.
Decision-making and disclosure
Most AYA patients want to be involved in decision-making,67,70 although the preferred timing of these conversations needs to be individualized.71 In order to support AYAs decision-making needs, trainees benefit from attentiveness to family contexts.
Some AYAs live with their families of origin, while others live with partners and their own children, and yet some AYAs live with their own children and their own parents, revealing the complex nature of roles and decisional contexts in this age group.
The extent of involvement and responsibility AYAs desire may differ not only according to their emotional maturity, but also according to the nature of the decision.
Additionally, although most AYA patients are competent at making complex, life and death decisions,71–75 some are more comfortable deferring medical decisions to their parents.
Further, while many AYAs report wanting sole responsibility for smaller, day-to-day decisions, such as symptom management or whether to attend social events while on treatment, they may report being happy to share or even relinquish decisions for more critical medical decisions to their parents.70
These processes may also change as they become more unwell. Given these dynamic considerations, open conversations with the AYA about their parents’ role are essential, at multiple time points.
The involvement of AYAs in EOL conversations is often underdocumented, with the conversation occurring too close to death to allow AYAs time to prepare psychologically.76
Formal training in the ethics of autonomy, truthfulness, and respect for people allows palliative care trainees to consider the “when” of disclosure and involvement of AYA patients in care decisions rather than the “if” of these interactions. Keeping abreast of research in palliative communication enables trainees to view intense, emotionally charged family dynamics through a scientific and social lens.
For example, if an AYA’s mother insists on nondisclosure of the progression of terminal disease to her adolescent son, a trainee’s education on the ethical principle of truthfulness, bereaved parental regret when death was not discussed,77 and recognition of direct communication78 with an AYA equips the trainee to guide the family toward trust and truthfulness.
Many AYAs experience distressing symptoms during cancer treatment including at the EOL stage.76 The systematic assessment of symptoms and management of side effects are essential skills for trainees.
New knowledge about pharmacokinetics4 presented via didactic lessons should be supplemented with individualized symptom management in which trainees are taught to monitor patterns of symptom reporting.
AYA patients may underreport mental health symptoms in order to maintain a sense of normalcy,66 requiring trainees to have insight about specific psychological assessments and referrals. With the perceived loss of control secondary to cancer, AYAs benefit from choices and direct input on symptom management.