When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Overcoming refusal of treatment in pediatric cancer without legal involvement: A descriptive case series from interviews with pediatric oncologists.

To describe strategies that pediatric oncologists utilize to persuade families to initiate or continue chemotherapy after refusing treatment, we examined transcripts from interviews of oncologists with relevant experience. We identified three cases in which the pediatric oncologists' approaches led to voluntary acceptance of recommended treatment without legal intervention. Strategies used include direct communication with alternative medicine providers, time-limited trial of alternative therapy, and praying with the family. While we cannot conclude whether these approaches could be generalized to other cases, they offer ideas for pediatric oncologists to consider when facing the decision to seek judicial involvement or discontinue persuasive efforts.

A 50-year-old refugee woman with a lithopedion and a lifetime of trauma: a case report.

BACKGROUND: Lithopedion is a term that refers to a fetus that has calcified or changed to bone. The calcification may involve the fetus, membranes, placenta, or any combination of these structures. It is an extremely rare complication of pregnancy and can remain asymptomatic or present with gastrointestinal and/or genitourinary symptoms. CASE PRESENTATION: A 50-year-old Congolese refugee with a nine-year history of retained fetus after a fetal demise was resettled to the United States (U.S.). She had chronic symptoms of abdominal pain and discomfort, dyspepsia, and gurgling sensation after eating. She experienced stigmatization from healthcare professionals in Tanzania at the time of the fetal demise and subsequently avoided healthcare interaction whenever possible. Upon arrival to the U.S., evaluation of her abdominal mass included abdominopelvic imaging which confirmed the diagnosis of lithopedion. She was referred to gynecologic oncology for surgical consultation given intermittent bowel obstruction from underlying abdominal mass. However, she declined intervention due to fear of surgery and elected for symptom monitoring. Unfortunately, she passed away due to severe malnutrition in the context of recurrent bowel obstruction due to the lithopedion and continued fear of seeking medical care. CONCLUSION: This case demonstrated a rare medical phenomenon and the impact of medical distrust, poor health awareness, and limited access to healthcare among populations most likely to be affected by a lithopedion. This case highlighted the need for a community care model to bridge the gap between the healthcare team and newly resettled refugees.

The role of ethicists in pediatric hematology/oncology: Current status and future needs.

As pediatric hematology/oncology (PHO) becomes more complex and sub-subspecialized, dedicated PHO ethicists have emerged as sub-subspecialists focused on addressing ethical issues encountered in clinical and research practices. PHO physicians and other clinicians with advanced training in bioethics contribute to the field through ethics research, education, and ethics consultation services. Furthermore, there exists a newer generation of PHO trainees interested in bioethics. This review details the experiences of current PHO ethicists, providing a blueprint for future educational, research and service activities to strengthen the trajectory of the burgeoning sub-subspecialty of PHO ethics. Creating an American Society of Pediatric Hematology/Oncology (ASPHO) ethics Special Interest Group, enhancing clinical ethics education for pediatric hematologists/oncologists (PHOs), developing multi-institutional research collaborations, and increasing attention to ethical issues germane to nonmalignant hematology will serve the interests of the entire field of PHO, enhancing the care of PHO patients and careers of PHOs.

A Study of a Cultural Competence and Humility Intervention for Third-Year Medical Students.

OBJECTIVE: This study evaluates the effectiveness of a cultural competence and humility intervention for third-year medical students by assessing changes in clinical evaluation assessments in patient encounters. METHODS: This study examines the effect of a 1-h educational intervention on cultural competence and cultural humility for third-year medical students. Clinical assessments during observed patient encounters are compared in the clerkship before and after the intervention. The intervention adapts a previously studied cultural competence didactic and emphasizes cultural humility practices. Change in scores from the intervention cohort (clinical year 2019-2020) is compared to a pre-intervention cohort (2018-2019). RESULTS: Students who completed the intervention demonstrate greater clinical competency in "relating to patients in a respectful, caring, empathetic manner" as assessed by supervising physicians compared with pre-intervention cohort students (2.7% difference in earning top two scores in subsequent clerkship, P value 0.05, Cramer's V 0.04). Greater clinical competencies were also found in the intervention students compared with pre-intervention students in the domains "demonstrates accountability, contribution and commitment to patient care" and "develops insightful, focused, pertinent questions based on clinical scenarios" (3.8% difference in earning top two scores in subsequent clerkship, P value 0.01 and 5.1% difference, P-value 0.003 with Cramer's V of 0.05 and 0.06, respectively). CONCLUSIONS: Educational interventions to improve cultural competence and cultural humility are important during clinical years to shape future physicians. Our study suggests that brief interventions may improve medical students' clinical competencies. A future study with a more robust intervention is expected to yield more substantial results.

At the Intersection of Faith, Culture, and Family Dynamics: A Complex Case of Refusal of Treatment for Childhood Cancer.

Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child's maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment. First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally. Second, the maternal grandfather's ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values. Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents' true wishes and debate how to weigh nonverbal and indirect forms of communication. Finally, building upon the conclusions of these queries, I explore whether, if the child's prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment.

Should Clinicians Intervene If They Suspect That a Caregiver Whose Child Has Cancer Is at Risk of Psychological Harm?

Compelling arguments suggest that pediatric oncologists who have concerns about the mental health and well-being of a child's caregiver have a duty to intervene. These arguments are rooted in fundamental principles of beneficence, nonmaleficence, and justice. Not only do patients benefit when their parents and others caregivers are happy and healthy, but when the psychological distress of a caregiver is a consequence of the experience of illness and treatment, some of the responsibility for mitigating the harm falls to those who have an active role in directing treatment-the clinicians. However, systems to support clinicians in meeting this obligation are inadequate.

From Silence into Language: Questioning the Power of Physician Illness Narratives.

Physicians' narratives of their own experiences of illness can be a kind of empathic bridge across the divide between a professional healer and a sick patient. This essay considers ways in which physicians' narratives of their own and family members' experiences of cancer shape encounters with patients and patients' experiences of illness. It analyzes ethical dimensions of physicians' narratives (such as those by Atul Gawande, Siddhartha Mukherjee, and Paul Kalanithi) and of reflective writing in medical education. It also compares illness narratives written by physicians-turned-patients to those written by patients without medical training in order to explore questions of who ultimately benefits from these narratives and whether these narratives can engender greater empathy between clinicians and patients.

Incidence and consequences of varicella in children treated for cancer in Guatemala.

BACKGROUND: Varicella-zoster virus infection is associated with significant morbidity and mortality in immune-compromised children, despite treatment with antiviral agents. Universal varicella vaccine programs have significantly decreased this risk in many highincome countries, but in most low-income and middleincome countries, the burden of varicella in children treated for malignancy is poorly defined. METHODS: We retrospectively reviewed records of children at the National Unit of Pediatric Oncology (UNOP) in Guatemala diagnosed with varicella between January 2009 and March 2013 in order to calculate incidence of varicella and evaluate morbidity, mortality, treatment interruption, and cost. RESULTS: Fifty-nine cases of varicella were identified. Incidence was 23.4 cases per 1000 person-years (p-y). 66.1% of cases occurred in children with leukemia (median age 5.2 years; interquantile range 3.4-7 years) and 41.0% of these occurred during maintenance therapy. Source of exposure was identified for 14/59 (23.7%) children. Most were hospitalized (71.2%) and given intravenous acyclovir (64.4%). Eight (13.6%) children required critical care, and two (3.4%) died from disseminated varicella with multiorgan failure. Chemotherapy was delayed or omitted due to varicella in 50%. No significant differences in outcomes based on nutritional and immunologic status were detected. The minimum average cost of treatment per episode was 598.75 USD. CONCLUSIONS: Varicella is a significant problem in children treated for cancer in Guatemala, where effective post-exposure prophylaxis is limited. In the absence of universal varicella vaccination, strategies to improve recognition of exposure and the future use of novel inactivated vaccines currently under investigation in clinical trials could mitigate this burden.

"Ghosts in my body": Seizure-like presentation of hypocalcemic tetany secondary to hypomagnesemia in a patient receiving cetuximab therapy for metastatic medulloblastoma.

Cetuximab, a monoclonal antibody specific for epidermal growth factor receptor, is increasingly used off-label and in early-phase trials for pediatric malignancies. Here, we report a patient with metastatic medulloblastoma receiving therapy with cyclophosphamide, vinblastine, and cetuximab. During evaluation for possible seizures, he was noted to be severely hypocalcemic, hypokalemic, and hypomagnesemic, a consequence of the blockade of renal epidermal growth factor receptor expression. His symptoms rapidly abated with intravenous electrolyte repletion. This case highlights the clinical heterogeneity of tetany and the importance of careful laboratory screening for known adverse effects of chemotherapy, particularly when newer biological agents are used off-study in combination chemotherapeutic regimens.