CONTEXT:

Refusal of treatment for childhood cancer engenders much discussion. No systematic study of this phenomenon exists in countries where access to treatment is readily available.

OBJECTIVE:

To identify and describe all published cases of treatment refusal for childhood cancer in the contemporary era.

DATA SOURCES:

We searched PubMed, Cumulative Index to Nursing and Allied Health Literature, Scopus, LexisNexis Academic, personal database, and secondary bibliographies.

STUDY SELECTION:

Eligible studies included at least 1 child <18 years of age and addressed refusal of medically recommended interventions intended to cure cancer.

DATA EXTRACTION:

Cases were analyzed with respect to key features, including demographics, rationale for refusal, legal action, and medical outcome; data were combined for multiple publications discussing the same case.

RESULTS:

Of 4342 unique publications identified, 579 were eligible after screening; 96 scholarly articles and 19 judicial opinions addressed 73 unique cases of treatment refusal. Most cases occurred in the United States. Rationales for refusal were broadly grouped into 4 categories. Fifty-one cases (70%) involved legal action at the time of refusal. Legal action did not reliably predict survival.

LIMITATIONS:

Publication bias and missing data, especially for cases without legal action, were limitations.

CONCLUSIONS:

We identified important gaps in the literature, including the significant variation in approaches and lack of consensus regarding the prognostic threshold necessary for compelling treatment and the absence of voices of children and adolescents who have received treatment over their families’ objections. More research reporting effective strategies for working with families who refuse is needed.

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