Ethical Issues With Patient-Provider Interactions in an Evolving Social Media Landscape.

Billions of people use social media, including many patients, families, and providers. As social media has evolved, so have the challenges users face when choosing to share or view content. These challenges are even more complex when providers care for patients and families who post publicly about their experience in the medical system, especially when they have many followers. In this Ethics Rounds, we present a case of a resident physician caring for a medically complex child whose parent has hundreds of thousands of followers on her social media accounts where she posts details of her child's medical experience. The resident is considering viewing the parent's posts. An ethicist, a family advocate, and a pediatric resident provide commentaries. The first discusses issues of privacy, influencer culture, and decision-making. The second addresses communication and the difficulties families face as they interact with the medical system. The third discusses outdated policies and risks to the therapeutic relationship. The commentators generally agree that it is preferable for providers to discuss their concerns with patients or parents/guardians directly rather than view their social media surreptitiously. Although there may be some benefits to viewing someone's posts, such as gaining a better understanding of their life at home, it would be best for the provider to view them with the patient/parent to allow them to provide context.

Adverse Events During Apnea Testing for the Determination of Death by Neurologic Criteria: A Single-Center, Retrospective Pediatric Cohort.

OBJECTIVES: To report the prevalence of adverse events in children undergoing apnea testing as part of the determination of death by neurologic criteria (DNC). DESIGN: Single-center, retrospective study. SETTING: Academic children's hospital that is a Level I Trauma Center. PATIENTS: All children who underwent apnea testing to determine DNC from July 2013 to June 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We abstracted the medical history, blood gases, ventilator settings, blood pressures, vasoactive infusions, intracranial pressures, chest radiographs, and echocardiograms for all apnea tests as well as any ancillary test. Adverse events were defined as hypotension, hypoxia, pneumothorax, arrhythmia, intracranial hypertension, and cardiac arrest. Fifty-eight patients had 105 apnea tests. Adverse events occurred in 21 of 105 apnea tests (20%), the most common being hypotension (15/105 [14%]) and hypoxia (4/105 [4%]). Five of 21 apnea tests (24%) with adverse events were terminated prematurely (three for hypoxia, one for hypotension, and one for both hypoxia and hypotension) but the patients did not require persistent escalation in care. In the other 16 of 21 apnea tests (76%) with adverse events, clinical changes were transient and managed by titrating vasoactive infusions or completing the apnea test. CONCLUSIONS: In our center, 20% of all apnea tests were associated with adverse events. Only 5% of all apnea tests required premature termination and the remaining 15% were completed and the adverse events resolved with medical care.

Triage Policies at U.S. Hospitals with Pediatric Intensive Care Units.

OBJECTIVES: To characterize the prevalence and content of pediatric triage policies. METHODS: We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators. RESULTS: Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children's hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions. CONCLUSIONS: While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities.

A Mixed Methods Analysis of Requests for Religious Exemptions to a COVID-19 Vaccine Requirement.

Background: While employers are increasingly considering and implementing COVID-19 vaccination requirements, little is known about the reasons offered by employees seeking religious exemptions.Methods: We conducted a mixed methods analysis of all the requests for religious exemptions submitted during the initial implementation of a COVID-19 vaccination requirement at a single academic medical center in the United States.Results: Five hundred sixty-five (3.4%) employees requested religious exemptions. At least 305 (54.0%) requesters had job titles suggesting that they had direct patient contact. Four hundred ninety-nine (88.3%) of requesters self-identified as Christian, of whom 120 (21.2%) identified as Roman Catholic. Requesters offered 0 to 8 (mean 2.7) categories of reasons for their request. The most frequently stated reasons pertained to the use of fetal cell lines in vaccine development and manufacturing (382, 67.6%), interest in maintaining purity (221, 39.1%), or belief in divine healing (172, 30.4%). Some requesters also volunteered evidence of the sincerity of their beliefs including examples of their religious practices (116, 20.5%), other practices (66, 11.7%), and emotional states (32, 5.7%). One hundred fifty-two applications (26.9%) contained text copied without attribution, primarily from sample religious exemption request letters available on the Internet.Conclusions: Most requesters focused on the use of fetal cell lines in the development or manufacturing of the vaccines as the justification for their request. The development of vaccines that are not reliant on fetal cell lines may increase vaccination rates. Understanding reasons for religious exemption requests may inform vaccine education and vaccination policies.

An Ethical Analysis of Newborn Congenital Cytomegalovirus Screening.

Congenital cytomegalovirus (cCMV) affects approximately 1 in every 200 US infants and can be associated with long-term neurodevelopmental sequelae, including sensorineural hearing loss, cerebral palsy, and intellectual disability. As cCMV is infrequently diagnosed based on clinical suspicion alone, newborn cCMV screening programs have been gaining traction, especially hearing-targeted programs which only test infants who fail their newborn hearing screen. cCMV screening programs raise unique ethical dilemmas of both under- and over-diagnosis of cCMV. In this Ethics Rounds, we present a case in which the parents of a child with symptomatic cCMV that was not recognized until 4 years of age urge the birth hospital to implement a cCMV screening program. We then ask a parent-clinician, a medical ethicist and pediatrician, and a primary care pediatrician to comment on how they would advise the hospital administration and consider the ethical and clinical implications of a cCMV screening program. The commentaries herein arrive at differing conclusions about cCMV screening. The first highlights the developmental advantages of early cCMV detection, supporting a broad approach to treatment beyond antiviral medication alone. The second explores cCMV screening from the perspective of newborn screening as a public health program, noting shortcomings in available testing platforms, and raising concerns about overdiagnosis and overtreatment. The final commentary challenges the risks of undue parental anxiety and vulnerable child syndrome as a barrier to screening, instead considering cCMV screening as a controlled opportunity to understand and support the experiences of affected children and their families.

Off-Label Prescription of COVID-19 Vaccines in Children: Clinical, Ethical, and Legal Issues.

The US Food and Drug Administration (FDA) approval of the biologics license application for the Pfizer-BioNTech coronavirus disease 2019 vaccine (Comirnaty) on August 23, 2021, opened the door to the off-label vaccination of children younger than the age range currently covered by either the biologics license application (16 years old and older) or the emergency use authorization (12 to 15 years old). Although prescribing medications at doses, for conditions, or in populations other than those approved by the FDA is generally legal and is common in pediatrics, the FDA, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics have recommended against off-label prescription of the coronavirus disease 2019 vaccine. Several commentaries consider a case in which parents ask their child's pediatrician to prescribe the vaccine for their 11-year-old with special health care needs before approval or authorization in her age group. The first commentary considers the potential benefits and risks to the patient, as well as to the family, the provider, and society, emphasizing the unknown risks in younger patients and the need for adequate informed consent. The second commentary describes an algorithm and principles for evaluating off-label prescribing and argues that the current benefits of prescribing Comirnaty off label to children <12 do not outweigh the risks. The third commentary addresses ethical and legal issues, ultimately calling on federal agencies to remove legal barriers to making the vaccine available to children in age groups that currently lack authorization.

Assessing Visitor Policy Exemption Requests During the COVID-19 Pandemic.

During the coronavirus disease 2019 (COVID-19) pandemic, many hospitals have added COVID-19-specific visitor restrictions to their routine visitor restrictions. These additional visitor restrictions are designed to reduce viral transmission, protect patients and staff, and conserve personal protective equipment. They typically exempt patients with disabilities and those who are dying. Consistent application of these policies may, however, be inequitable. We present the case of a single mother seeking an individual exemption to both a routine and a COVID-19 specific visitor restriction. One commentator focuses on the importance of clear and transparent processes for considering requests for exceptions. The other argues that disproportionate burdens may be mitigated in other ways and the policy maintained.

Can Parents Restrict Access to Their Adolescent's Voice?: Deciding About a Tracheostomy.

Parents are the default decision-makers for their infants and children. Their decisions should be based on the best interests of their children. Differing interpretations of children's best interests may be a source of conflict. Providers' biased evaluations of patients' quality of life may undermine medicine's trustworthiness. As children mature, they should participate in medical decision-making to the extent that is developmentally appropriate. In this month's Ethics Rounds, physicians, a philosopher, and a lawyer consider parents' demand, supported by the hospital's legal department, that their 17-year-old son be excluded from a potentially life-and-death medical decision.

What Should an Intern Do When She Disagrees With the Attending?

Disagreements, including those between residents and attending physicians, are common in medicine. In this Ethics Rounds article, we present a case in which an intern and attending disagree about discharging the patient; the attending recommends that the patient be hospitalized longer without providing evidence to support his recommendation. Commentators address different aspects of the case. The first group, including a resident, focus on the intern's potential moral distress and the importance of providing trainees with communication and conflict resolution skills to address inevitable conflicts. The second commentator, a hospitalist and residency program director, highlights the difference between residents' decision ownership and attending physicians' responsibilities and the way in which attending physicians' responsibilities for patients can conflict with their roles as teachers. She also highlights a number of ways training programs can support both trainees and attending physicians in addressing conflict, including cultivating a learning environment in which questioning is encouraged and celebrated. The third commentator, a hospitalist, notes the importance of shared decision-making with patients and their parents when decisions involve risk and uncertainty. Family-centered rounds can facilitate shared decision-making.

Opioid Management in the Dying Child With Addiction.

The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient's goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed.

An Ethical Analysis of Hospital Visitor Restrictions and Masking Requirements During the COVID-19 Pandemic

Nonpharmaceutical interventions to minimize the transmission of the severe acute respiratory syndrome coronavirus 2 are necessary because we currently lack a vaccine or specific treatments. Healthcare facilities have adopted visitor restrictions and masking requirements. These interventions should be evaluated as public health measures, focusing on their efficacy, the availability of less-restrictive alternatives, and the minimization of the burdens and their balance with the benefits. These interventions, as well as exceptions, can be justified by the same analysis. For example, visitor restrictions are sound, as are exceptions for women in labor, adults with disabilities, minor children, and individuals who are dying. In implementing these policies, specific rules are preferable to general principles because they are more efficient and reduce possible bias. There should, however, be appeal mechanisms and retrospective review processes. Evaluating requests for medical exemptions to masking requirements is particularly difficult, given the prevalence of nonmedical objections, false claims of medical exemptions, and a lack of objective medical criteria. Requiring written statements by licensed healthcare providers that undergo subsequent substantive review may therefore be justified.

Ventilator Triage Policies During the COVID-19 Pandemic at U.S. Hospitals Associated With Members of the Association of Bioethics Program Directors.

BACKGROUND: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies. OBJECTIVE: To characterize the development of ventilator triage policies and compare policy content. DESIGN: Survey and mixed-methods content analysis. SETTING: North American hospitals associated with members of the Association of Bioethics Program Directors. PARTICIPANTS: Program directors. MEASUREMENTS: Characteristics of institutions and policies, including triage criteria and triage committee membership. RESULTS: Sixty-seven program directors responded (response rate, 91.8%); 36 (53.7%) hospitals did not yet have a policy, and 7 (10.4%) hospitals' policies could not be shared. The 29 institutions providing policies were relatively evenly distributed among the 4 U.S. geographic regions (range, 5 to 9 policies per region). Among the 26 unique policies analyzed, 3 (11.3%) were produced by state health departments. The most frequently cited triage criteria were benefit (25 policies [96.2%]), need (14 [53.8%]), age (13 [50.0%]), conservation of resources (10 [38.5%]), and lottery (9 [34.6%]). Twenty-one (80.8%) policies use scoring systems, and 20 of these (95.2%) use a version of the Sequential Organ Failure Assessment score. Among the policies that specify the triage team's composition (23 [88.5%]), all require or recommend a physician member, 20 (87.0%) a nurse, 16 (69.6%) an ethicist, 8 (34.8%) a chaplain, and 8 (34.8%) a respiratory therapist. Thirteen (50.0% of all policies) require or recommend that those making triage decisions not be involved in direct patient care, but only 2 (7.7%) require that their decisions be blinded to ethically irrelevant considerations. LIMITATION: The results may not be generalizable to institutions without academic bioethics programs. CONCLUSION: Over one half of respondents did not have ventilator triage policies. Policies have substantial heterogeneity, and many omit guidance on fair implementation. PRIMARY FUNDING SOURCE: None.

Relational Potential versus the Parent-Child Relationship.

In an article in this issue of the Hastings Center Report, Aaron Wightman and his coauthors attempt to address health care providers' moral distress about acceding to parents' requests to provide life-sustaining medical treatment to children who have profound cognitive disabilities. They propose combining John Arras's relational potential standard and care ethics, and they argue that the capacity for caring relationships can provide an independent moral justification for honoring such requests. This combination is, however, unstable. Wightman et al.'s language of potential and capacity opens the possibility of substantial misinterpretation. They rely on epistemological and prognostic uncertainty to argue that reciprocity and participation may be present in the parent-child relationship even when the child's engagement cannot be observed. The terminology suggests that these are characteristics that can be gained or lost rather than characteristics of being born within certain social practices. In contrast, Eva Feder Kittay illuminates family membership as an important social relation. Her articulation of the independent moral value of parenting stands on its own without being conjoined to Arras's position.