Talking to terminally ill adolescents about progressing disease

A new review article published online by JAMA Pediatrics uses a hypothetical case scenario to explore the ethics, emotions and skills for talking to terminally adolescents about their progressing disease.

The case scenario: Carolos was 16 when he was diagnosed with metastatic osteosarcoma, a bone cancer. When his disease progressed and a cure became unlikely, Carlos' parents asked that he not be told of his prognosis, a request that distressed members of his health care team because of the nondisclosure and missed opportunities for advanced planning.

The article by Abby R. Rosenberg, M.D., M.S., of the Seattle Children's Hospital, and coauthors reviewed ethical justifications for and against truth-telling, considered published ethical and practice guidance, and considered the perspectives of patients, parents and clinicians who find themselves in these situations. The article also offers help for clinicians to better navigate these difficult conversations with patients and their families.

"In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing," according to the article.