Role clarification and professional boundaries
Trainees may require specific mentorship on ways to foster the trust of AYA patients and a sense of connectedness while supporting the patient’s nonmedical social network and maintaining professional boundaries.79,80
Working with AYAs with cancer may bring a trainee’s first confrontation with mortality, an experience intensified by the developmental vibrancy of this age group and by the practical reality that some trainees are the same age as AYA patients.
Prognostic honesty and communication
Although most AYAs do not raise the issue of prognosis with their parents or health-care team, this does not mean that thoughts and worries about life expectancy and disease progression are not active concerns for AYAs.81
Clinicians may be uncertain as to when and to whom to address issues related to prognosis. A study with AYA patients with stage IV/disseminated cancer found 76% of patients received medically intensive EOL care, despite their EOL care preferences not being known.82
Studies have reported that AYAs are interested in developmentally appropriate advance care planning,73,74 and other research has indicated that being given more time in which to process a poor prognosis increases the chances of resilience in the face of death.83
These findings suggest the need for clinicians to communicate honestly and early about prognosis, serving as communication role models for trainees.84 Less is known regarding what AYAs with advanced cancer find to be the most helpful language or terminology to use.
Given that studies show that parents can continue to maintain hope for their child’s survival, even after being told that their death is certain,85 it is also likely that the use of ambiguous language will increase misunderstandings in AYA patients.
Training in this area needs to support health-care providers to navigate the delicate balance between supporting ongoing hope and being clear that cure is no longer possible.86,87
The best approach appears to be for health-care providers to follow the AYA’s lead, and adopt an attitude of hope, where the hope is no longer focused on cure but on other wishes the AYA may have.1,74
This has been described as an “insurance policy”–type approach, where the AYA and their family may be encouraged to “hope for the best, but prepare for the worst.”88
In supporting this approach, it may be important to address the role of integrative medicine including complementary and alternative medicines (eg, acupuncture, Reiki, massage, music therapy), other nonmedical approaches (eg, organic diets, vitamin C injections, etc), and/or experimental treatments that AYAs and their families may seek out in the palliative phase.
Trainees may benefit from mentored teaching that introduces these options while gently supporting the AYA/family’s autonomy.
Where Phase I clinical trials are an option, the potential QOL-related advantages and disadvantages should be discussed in an honest manner with AYAs, who may not realize that Phase I trials do not aim to cure them.89 Table 5 provides suggestions for ongoing prognostic communication.
(To view a larger version of Table 5, click here.)