Health Equity: Advance Care Planning for Spanish Speaking Teens With Cancer-1st Resubmission

Non-English-speaking patients are far less likely to have advance care planning documents than English speakers. Some ethnicities in an adult study had no patients with an advance care planning document. Since completing advance care planning may increase early palliative care enrollment, as it did in the FACE-TC study, strategies to promote pACP are urgently needed, particularly with non-English speaking patients.

Transactional stress and coping theory is the basis for the FACE intervention, because interventions can change the appraisal of an illness from that of a death threat to a challenge with potential for personal growth and mastery.

Many adolescents want to talk about their goals and values regarding their own end-of-life care. These important discussions are often regarded as needed, but not initiated before a medical crisis, due to perceived (and unwarranted) fears they will cause anxiety, take away hope or cause physician or family discomfort. Parents who discussed death with their children who were dying of cancer reported no regrets. Pediatric ACP for adolescent cancer patients is a public health issue, because of its high burden and potential for the prevention of suffering, as most teen and young adult cancer patients at end of life get aggressive care. The proposed study will explore prospectively whether Hispanic/Latino teens can be safely supported to help them make informed choices with their families, advancing clinical practice. Heretofore, family refers to the legal guardian(s) or surrogate decision maker(s) of the adolescent patient with cancer.

Age appropriate communication that includes the adolescent and family can facilitate decisions about medical treatments that precede death. Competency to participate in decision-making has been challenged by research on adolescent brain development, which demonstrates the structure of the adolescent brain is not fully formed.

However, what these findings mean in terms of the actual functioning or behavior of an individual adolescent is unclear, stirring up legal and public policy debates. The implications for pACP are unclear. Empirical evidence and the ethical principles of justice and autonomy support the practice of including adolescents in decision-making about their future medical care, if they could not speak for themselves. Cognitive capacities required for "informed consent" for medical treatment exist in early adolescence. Nor is there reason to suspect that young adolescents have a less mature understanding of death: irreversibility; finality or non-functionality; universality or inevitability; and causality. Hinds and colleagues found that children with cancer realized they were involved in an end-of-life decision, understood the consequences of their decision (that death is the outcome no matter what), and could share the reasons for their preferences. The decision factors most frequently reported by pediatric patients were relationship based, while parents identified good communication. Parents also thought that communicating with the child about end-of-life preferences was appropriate when approached with sensitivity and care. The issues facing adolescents with a life-threatening illness are different from those facing adults, because minors' preferences are not legally binding.