“The Stakes Could Not Be Higher”: A Qualitative Study of Parental Social Media Use in Pediatric Oncology

Background: To describe how parents and families of children with cancer evaluate the benefits and risks of using social media (SM) and how they navigate disagreements between oncologists’ advice and information found on SM. Procedure: Parents of children who had been previously diagnosed with cancer, and who had used SM for a purpose related to that child’s health were recruited through SM sites and nonprofit organizations across the U.S. and were invited to complete questionnaires about their experiences using SM; a subset of participants also completed a follow-up in-depth interview. Open-ended responses and interviews were analyzed using thematic analysis. Results: 90 parents completed written questionnaires; 21 completed follow-up interviews. 70% described experiencing a situation in which information shared on SM conflicted with information provided by their child’s oncologist. Although 86% discussed it with the oncologist and 70% described the response as positive, 78% retained negative feelings about the experience. Openness to discussing SM, honesty, transparency and humility regarding the limits of medicine, and shared decision-making regarding information found on SM were connected with reported trust in the oncologist. Conclusions: Parents offered valuable insights regarding their experiences navigating SM, including 8 recommendations for how pediatricians might approach discussing parental SM use. Future studies will evaluate the utility of these recommendations for pediatric clinicians.

Patienthood, Body, and Life Span

Changes in medical technologies have increased questions about how best to handle end-of-life care at the same time as raising questions about the extent to which death can be held off or the life span extended. This article is an offshoot from a broader examination of medical approaches to the dying in two South Asian medical traditions. In this piece, tensions between letting go of life and extending it are illuminated by an exploration of patienthood and body in the context of dying via the Carakasaṃhitā, a foundational text of Ayurveda. These tensions continue in the tradition and speak to questions raised in biomedicine as well. An acknowledgment of the limits of medicine comes up against the desire to continually do more, to cure us of our mortality. Much work has been done on the concept of the body in South Asian medicines, but little has focused on the stage of dying.

An interdisciplinary view of AIDS in the 1980s: On stage, Journalism and Health

This article presents acquired immunodeficiency syndrome (AIDS, in Portuguese, or AIDS), when it appeared in the 1980s from an interdisciplinary perspective: on the one hand, signs, symptoms, diagnostic methods and treatment are addressed and are part of the biomedical model that participates in the interpretation of this disease; on the other, the representations of the disease in journalistic articles published in the newspaper O Globo, one of the most important in Brazil. Health and Journalism help to build ideas and understand concepts, prejudices and stigmas that relapse dwell and still fall on the disease that became known as the gay plague, one of several denominations attributed to AIDS when it arose. It is discussed whether it is possible to understand the health-disease process from a plural perspective, which goes beyond the limits of medicine. For this, we analyze texts from the newspaper O Globo, which deal with the HIV/AIDS binomial, paying special attention to the language and lexicography used in the elaboration of them, and taking into account the medical view about the disease in the 1980s. The work allows us to conclude that it is possible and necessary to face the health-disease process using not only biological phenomena, but using social, economic, political and environmental aspects, in front of various disciplinary fields.

Getting the Balance Right: Medical Futility, Scientific Advancement, and the Role of Law

The concept of medical futility as an applied ethical framework has seen a rise and fall in its popularity over the last 30 years. It is a term used in relation to the assessment of a patient’s health condition that is deemed untreatable, irreversible, and unresolvable. In four recent cases, Gard, Evans, Haastrup, and Raqeeb, the concept has been brought to the fore once again. These cases highlight a mounting tension between clinicians and families. Parental desires to see their child’s treatment continued, while understandable, should not dominate treatment planning. This article analyses judicial interpretation of the factors which determine an assessment of futility and in doing so, argues that the role of medical futility in judicial decisions of this kind is gaining prominence and will continue to do so as scientific advancement blurs the limits of medicine even further.

An Analysis of Charlie’s Law and Alfie’s Law

The Charlie Gard and Alfie Evans cases were high-profile cases involving disagreements between the parents of young infants and medical practitioners, which have given impetus to pre-existing calls for law reform that have been rebranded as ‘Charlie’s Law’ and ‘Alfie’s Law’. I argue against the proposal to replace the best interest test, which is currently determinative in such contentious cases, with a significant harm test, as it would render UK law divergent from international law. I also employ critical theory to rebut the notion that parents are the best decision makers and refute criticisms of clinicians (who reflexively acknowledged the limits of medicine). I utilise theories of distributive justice to demonstrate that legal reform may exacerbate unfairness, and case law to show that it may be unworkable. Nonetheless, I apply critical and Foucauldian theory to critique the lack of patient and public empowerment within the NHS and I endorse the proposal to ensure that mediation is offered in contentious cases, as this may empower patients and their carers. I also aver that the best interests test should be informed by clearer criteria regarding the allocation of finite resources, which the public should influence via the democratisation of the NHS.

The right to die with dignity and conscientious objection

he project of life is linked to freedom, as a right of each person to choose their own destiny. (...) The project of life fully encompasses the ideal of the American Declaration (of the Rights and Duties of Man) of 1948, which proclaims the spiritual development as the supreme end and the highest expression of human existence. Colombia's Constitutional Court, at guaranteeing the fundamental right to live and die with dignity, in the liberating expression of human rights, did not forget the mythical image of Charon ferrying the dead in his boat to Hades . In Colombia, the struggle against death, stubborn and limitless, contrary to the expression of the patients' will, cannot anymore be accepted as a duty or as a right of the doctors, who now must resign themselves to the conscious and independent decision of their patients, understanding the dimension of existence and of human dignity against the limits of medicine and science, to lead them, just with the necessary palliative care, in crossing the River Styx, to the "world of the dead ". Denying euthanasia, in terms of the decision of the Constitutional Court, constitutes a flagrant violation of the patients' "life project", who have, in the established circumstances, the right to legitimate anticipation of death.