Prognostic Disclosure to Dying Adolescents Against Parental Wishes: A Point-Counter Point Debate.

An adolescent's last moment of life is an emotionally and medically complex time. Children may grapple with understanding the things happening to them and with grief of a future lost; caregivers struggle to simultaneously balance deep sorrow, hope, and love; and healthcare providers fight to maintain sound medical and ethical decision making. Increased discussion regarding adolescent end-of-life care is needed so that clinicians may better understand how to engage in ethically based medical management during these events. This holds particularly true in situations where potentially conflicting ideas exist between clinicians and family members. We describe the case of an acutely and terminally ill adolescent who remained cognitively intact but with rapidly advancing multiple organ failure and whose parents requested that he remain uninformed of his critical illness and prognosis.

Teaching the Skill of Shared Decision Making Utilizing a Novel Online Module: A Pilot Randomized Controlled Study.

OBJECTIVES: In this pilot study, we developed and tested an online educational module for the purpose of teaching optimal shared decision making (SDM) behaviors for physicians in training. We hypothesized that those who received this intervention would show significant improvement in SDM behaviors afterward as compared with those who had not received the intervention. METHODS: Pediatric subspecialty fellows (pediatric critical care medicine, neonatology, hematology and oncology, and pulmonology) at the Monroe Carell Jr Children's Hospital at Vanderbilt were eligible to participate, if approved by their respective program directors. Design was a randomized crossover trial of an online educational module to promote behaviors essential to SDM. Participants were randomized by subspecialty. Experts in clinical communication blinded to participants' study arms evaluated SDM behaviors in video-taped clinical simulations with standardized parent dyads. The study protocol was approved by the Vanderbilt University Institutional Review Board. RESULTS: Participants receiving the intervention were approximately 40 times more likely to improve their subsequent total score when compared with simply repeating the simulation alone (95% confidence interval, 1.72-919.29; P = .022). CONCLUSIONS: This pilot study demonstrates that an online, interactive module can be an effective way of teaching the skill of SDM to pediatric subspecialty trainees. Tools like this one could help overcome the limitations inherent in currently published SDM resources and meet the need for interventions with demonstrated effectiveness, helping to increase the utilization of SDM skills by providing primary or supplemental education at institutions across the resource spectrum.

Relationship Between Palliative Care Consults and Outcomes of Pediatric Surgical Patients During Terminal Admissions.

Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Design: Retrospective cohort study using data from the electronic health record. Setting and Participants: Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021. Main Outcomes and Measures: Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death. Results: Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, p = 0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, p < 0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, p = 0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level. Conclusions and Relevance: Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.

Neonatal Hereditary Fructose Intolerance: Diagnostic Misconceptions and the Role of Genomic Sequencing.

Hereditary fructose intolerance (HFI) is a rare inborn error of metabolism due to deficiency of the enzyme aldolase B, preventing metabolism of fructose. Patients remain asymptomatic until exposed to fructose, sucrose, or sorbitol. HFI presenting as acute liver failure in the neonatal period is rare due to lack of exposure as breast milk and infant formulas are considered to be fructose free. Diagnosis can be delayed due to vague symptoms and lack of specific biomarkers. Recent advances in genetic testing have led to rapid diagnosis and favorable outcomes. We present the case of a formula-fed neonate who presented with acute liver failure where definitive diagnosis of HFI was made using expedited whole exome sequencing. Through this communication, we aim to bring attention to neonatal presentations of HFI from exposure to fructose in infant formulas and also highlight advances in rapid turnaround genomic testing in diagnosis.

Shared Decision-Making in Palliative Care: A Maternalistic Approach.

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Serious Illness in Pregnancy.

Palliative care (PC) teams are increasingly being called upon to provide care earlier and more remote from end of life. Because much of the field has grown out of hospice and geriatric care, most teams have little to no experience caring for pregnant women or their fetuses when serious or life-threatening illness strikes. This article, written by a team of oncologists (gynecologic, medical, and radiation) and PC providers, seeks to demystify the care of seriously ill pregnant women and their fetuses by exploring the diagnostic, treatment, prognostication, symptom management, and communication needs of these patients. Truly comprehensive PC extends throughout the life span, from conception to death, regardless of age. Accordingly, increased knowledge of the unique needs of these vulnerable groups will enhance our ability to provide care across this continuum.

When Only Family Is Available to Interpret.

When caring for patients and families who do not speak English, medical interpreters are necessary. Sometimes, our patients' families speak languages or dialects for which no in-person or video or phone interpreter can be found. If a family member is bilingual, the members of the medical team must make a difficult choice. Is it better to use a family member as translator or to not be able to communicate at all? In this article, we present the case of a critically ill patient with complicated pathophysiology whose family speaks a rare Guatemalan dialect for which no medical interpreters can be identified.