Refusal of Treatment of Childhood Cancer: A Systematic Review

Abstract

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.

Ethical issues in the care of adolescent and young adult oncology patients

“…In contrast, other states have compelled adolescents to continue cancer treatments against their wishes. A recent systematic review of treatment refusals in pediatric oncology found that approximately one quarter of families claimed their child was a mature minor, with the parents supporting the AYA's refusal of treatment . Regardless of their legal standing, young people with illness may have a strong interest in being part of medical decision‐making discussions, and their inclusion and involvement in these discussions is widely supported …”

“…A judge may be hesitant to overrule the legal decision maker when the benefits of therapy are unclear (e.g., when the cure rate is less than 75%, even with recommended chemotherapy) or when there is no clear evidence of active disease (e.g., when the disease is in remission, but it is too early to discontinue therapy and still have a reasonable chance of cure). Other reported challenges are poor outcomes due to disease progression before the court decision or families fleeing a jurisdiction to avoid compulsion …”

“…Modified plans should still have potential for cure or life prolongation; otherwise, there is no benefit to exposing the AYA patient to undue toxicity. Brown and Slutzky recently published a systematic review on the refusal of treatment in pediatric oncology, and Sisk et al provide a framework for the clinician's role in disagreements between adolescents and parents …”

“…In cases of treatment refusal, discord within the families is usually uncommon, and parents or guardians rarely refuse treatment that is desired by patients who are old enough to express their wishes. 16 A recent systematic review identified several contextual factors related to treatment refusal: concerns about adverse effects, perceived futility of treatment, faith-based reasons, preference for complementary and alternative medicine, or lack of insight into the proposed treatment. 16 Although some adolescents can make medical decisions via mature minor doctrines, legal outcomes and laws regarding consent or refusal of treatment by individuals younger than 18 years are inconsistent and vary widely.…”

“…16 Although some adolescents can make medical decisions via mature minor doctrines, legal outcomes and laws regarding consent or refusal of treatment by individuals younger than 18 years are inconsistent and vary widely. 13,16 Judicial rulings and/or legal action to override an AYA and their legal decision maker to compel treatment typically do not result in favorable medical outcomes. A judge may be hesitant to overrule the legal decision maker when the benefits of therapy are unclear (e.g., when the cure rate is less than 75%, even with recommended chemotherapy) or when there is no clear evidence of active disease (e.g., when the disease is in remission, but it is too early to discontinue therapy and still have a reasonable chance of cure).…”