When to stop? Decision-making when children’s cancer treatment is no longer curative: a mixed-method systematic review

Abstract

BackgroundChildren with cancer, parents, and clinicians, face difficult decisions when cure is no longer possible. Little is known about decision-making processes, how agreement is reached, or perspectives of different actors. Professionals voice concerns about managing parental expectations and beliefs, which can be contrary to their own and may change over time. We conducted the first systematic review to determine what constitutes best medico-legal practice for children under 19 years as context to exploring the perspectives of actors who make judgements and decisions when cancer treatment is no longer curative.MethodsTheory-informed mixed-method thematic systematic review with theory development.ResultsEight legal/ethical guidelines and 18 studies were included. Whilst there were no unresolved dilemmas, actors had different perspectives and motives. In line with guidelines, the best interests of the individual child informed decisions, although how different actors conceptualized ‘best interests’ when treatment was no longer curative varied. Respect for autonomy was understood as following child/parent preferences, which varied from case to case. Doctors generally shared information so that parents alone could make an informed decision. When parents received reliable information, and personalized interest in their child, they were more likely to achieve shared trust and clearer transition to palliation. Although under-represented in research studies, young people’s perspectives showed some differences to those of parents and professionals. For example, young people preferred to be informed even when prognosis was poor, and they had an altruistic desire to help others by participating in research.ConclusionThere needs to be fresh impetus to more effectively and universally implement the ethics of professionalism into daily clinical practice in order to reinforce humanitarian attitudes. Ethical guidelines and regulations attempt to bring professionals together by articulating shared values. While important, ethics training must be supported by institutions/organizations to assist doctors to maintain good professional standards. Findings will hopefully stimulate further normative and descriptive lines of research in this complex under-researched field. Future research needs to be undertaken through a more deliberative cultural lens that includes children’s and multi-disciplinary team members’ perspectives to more fully characterize and understand the dynamics of the decision-making process in this specific end-of life context.

Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature

“…Patients and families carry similar misconceptions about palliative care, often perceiving PPC as a type of EOL care implemented only when curative cancer treatments have been exhausted and children and families have no other hope . This tendency to equate palliative care with giving up creates additional barriers to integrating palliative care into cancer treatment, especially because families tend to rate hope more highly than providers .…”

“…These conversations also are complicated by laws of consent; in most jurisdictions, children cannot consent until age 18 years. Potential disagreement on treatment plans among children, parents, and cancer care providers may further deter providers from initiating these difficult conversations . Many teenagers with cancer report a desire to participate in EOL discussions and a desire for those discussions to occur earlier; furthermore, children as young as 10 years can articulate their preferences and participate in decision making .…”

“…Patients and families carry similar misconceptions about palliative care, often perceiving PPC as a type of EOL care implemented only when curative cancer treatments have been exhausted and children and families have no other hope. 8,54,55 This tendency to equate palliative care with giving up creates additional barriers to integrating palliative care into cancer treatment, especially because families tend to rate hope more highly than providers. 56 Despite evidence suggesting that palliative care actually can foster hope among families facing advanced cancer, 36,57 pursuing hope through curative treatments, even when a cure is unlikely, can become paramount for families.…”

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

“…Various tools are being developed to facilitate this process . See Valdez‐Martinez for an in‐depth review of EOL decision‐making in adolescent oncology …”

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases

“…We used a data analysis and synthesis approach like other authors who incorporated qualitative and quantitative data into their review . Analysis began with thematic analysis of the first‐order findings, or 98 direct quotes of stakeholders reported in the manuscripts.…”