Differences in pediatric oncologists' estimates of curability and treatment recommendations for patients with advanced cancer

BACKGROUND: When goals of therapy for children with advanced cancer are called into question, physician recommendations regarding treatment goals have been shown to be important for families. However, there has been no demonstration of the degree of variation between pediatric oncologists' recommendations in such situations. PROCEDURE: We provided 48 pediatric oncologists with two identical case histories and identical prognostic data from the literature. Individual interviews were then performed to assess variation in (1) recommended treatment goal, (2) perceived chances for cure, and (3) degree to which further curative intervention would be considered desirable for each patient. RESULTS: There was a large variability in each of the areas examined. For both patients, there was wide divergence (2:1 and 2:3) in whether to recommend cure as the goal of treatment. There were also differences in physician estimates for likelihood of cure for each patient. Finally, even among those with identical estimates for likelihood of cure, there were differences in the treatment goals physicians would recommend and how strongly they would counsel for them. CONCLUSIONS: This study demonstrates that even with identical clinical data and prognostic evidence from the literature, pediatric oncologists vary widely in their recommendations regarding goals of treatment for children with advanced cancer.     

Parents know best: Or do they? Treatment refusals in paediatric oncology

Although treatment refusal is an infrequent occurrence in paediatric oncology, it is an important issue that threatens the ongoing therapeutic relationship between the health-care team and families. While there are good reasons to support the decision-making authority of parents in the medical setting, parents' rights in this respect are not absolute. Fortunately, most disagreements between clinicians and parents regarding treatment decisions for children are resolved within the health-care team/family dyad or with the objective advice of other clinicians or clinical ethics services. The increasing appeal of 'natural therapies' and unsubstantiated confidence with which they are prescribed may lead to more frequent refusal of conventional, evidence-based oncology treatment in the future. The harm principle may assist paediatric oncologists in the difficult task of determining when it is justifiable to refer a case for judicial intervention.     

Perceptions of vaccine safety in a global context

Given the serious consequences of low vaccine coverage, concerns and misconceptions need to be taken seriously and responded to appropriately to sustain accomplishments of immunization programmes. For parental decisions related to childhood vaccinations, it seems reasonable to assume that the cultural context of the immunization programme is of importance. This article is a short review of some recent studies of parental decision‐making on vaccination in developed countries Kazaktstan, Uzbekistan and Northern Nigeria. Furthermore, an attempt is made to relate the findings in these studies to theoretical models of parental decision‐making. Conclusion: For the implementation of immunization programmes, it is important to develop an in‐depth understanding of mechanisms underlying decisions to accept or reject the vaccination of a child. Theoretical models may aid in the understanding of these mechanisms.     

Fifty years of paediatric ethics

In 1965, when the first issue of Journal of Paediatrics and Child Health appeared, medical ethics was just becoming established as a discipline. The sub‐speciality of paediatric ethics did not make an appearance until the late 1980s, with the first key texts appearing in the 1990s. Professional concern to practice ethically in paediatrics obviously goes much further back than that, even if not named as such. In clinical areas of paediatrics, the story of the last 50 years is essentially a story of progress – better understanding of disease, better diagnosis, more effective treatment, better outcomes. In paediatric ethics, the story of the last 50 years is a bit more complicated. In ethics, the idea of progress, rather than just change, is not so straightforward and is sometimes hotly contested. There has certainly been change, including some quite radical shifts in attitudes and practices, but on some issues, the ethical debate now looks remarkably similar to that of 40–50 years ago. This is the story of some things that have changed in paediatric ethics, some things that have stayed the same and the key ethical ideas lying beneath the surface.     

Consent and public engagement in an era of expanded childhood immunisation

Childhood immunisation programmes have seen well-heralded successes in disease control. An increasing number of scheduled vaccines, narrowing risk-benefit ratios and public attention to vaccine safety raise new questions about consent. We first explore the challenges that this highly dynamic environment poses for valid consent. Then, we broaden this discussion to wider public engagement by suggesting how the public - the bearers of vaccine risk and benefit - can be better involved in immunisation policy.     

Patients and their family members prioritize post‐transplant survival over waitlist survival when considering donor hearts for transplantation

Heart transplant providers often focus on post‐transplant outcomes when making donor decisions, potentially at the expense of higher waitlist mortality. This study aimed to assess public opinion regarding the selection of donor hearts and the balance between pre‐ and post‐transplant risk. The authors generated a survey to investigate public opinion regarding donor acceptance. The survey was shared freely online across social media platforms in April‐May 2019. A total of 718 individuals responded to the survey, with an equal distribution between patients and family members. Respondents consistently favored post‐transplant outcomes over waitlist outcomes. About 83.9% of respondents favored a hospital with longer waitlist times, worse waitlist outcomes, but excellent post‐transplant survival over a hospital with short waitlist times, a high waitlist survival, and inferior post‐transplant survival. This preference was no different between pediatric and adult populations (P = .7), patient and family members (P = .935), or those with a pre‐ vs post‐transplant perspective (P = .985). Patients and their family members consistently favor improved post‐transplant survival over waitlist survival when considering the risks of accepting a donor organ. These findings suggest that current practice patterns of donor selection align with the opinions of patients and family members with heart failure or who have undergone heart transplantation.     

Valid informed consent and participative decision‐making in children with cancer and their parents: A report of the SIOP working committee on psychosocial issues in pediatric oncology

This is the tenth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, instituted in 1991. It is addressed to the pediatric oncology community. Children clearly have a right to participate in medical decisions regarding their own treatment, based on the developmental level of the child. The objective of these guidelines is to encourage physicians to share with the child developmentally relevant medical information specific to that particular child's health status, in the context of the child's own culture, so that he or she can actively participate in the decision‐making process regarding his or her own health. These guidelines, geared toward this objective, discuss the child's right to medical information, the parents' legal responsibility for but not exclusive right over the child's health, and ways of encouraging the younger child's active participation in his or her own health care at an age‐appropriate level of understanding. For adolescents, there should be a full and legally mandated power to make their own decisions regarding medical treatment. Med Pediatr Oncol 2003;40:244–246. © 2003 Wiley‐Liss, Inc.