Prognosis-Based Definitions for Potentially Inappropriate Treatment: Still Flawed, If Not Futile.

AbstractThis analysis of professional organizational policies regarding potentially inappropriate life-sustaining medical treatment (LSMT) focuses on the specific threshold criteria that policies apply for limiting LSMT, as well as when (if ever) override of patient/surrogate preferences may be reasonable. Our article offers a critical analysis of one influential approach, proffered by the Society of Critical Care Medicine, that applies a prognosis-based definition of nonbeneficial/inappropriate treatment to determine that ethical threshold. We observe that this prognosis-based threshold resembles rationing in important ways, though it pertains to settings where resources may not be limited.

Refusals of the Determination of Death by Neurologic Criteria: A Mixed Methods Study of Physician Perspectives on Refusals Cases.

Objectives: Refusals to allow examination for determination of death by neurologic criteria (DNC) challenge pediatric physicians and create distress for medical teams and families of patients suspected to meet criteria for DNC. The objective of this study was to inquire about and assess experiences with such refusals from the perspective of physicians.

Design: We conducted a mixed-methods survey and interview-based study to understand physicians' experiences with refusals.

Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer.

Background: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer.

Methods: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant.

A charitable access program for patients with lysosomal storage disorders in underserved communities worldwide.

Background: Lysosomal storage disorders (LSDs) are rare genetic disorders, with heterogeneous clinical manifestations and severity. Treatment options, such as enzyme replacement therapy (ERT), substrate replacement therapy, and pharmacological chaperone therapy, are available for several LSDs, including Gaucher disease (GD), Fabry disease (FD), and Hunter syndrome (mucopolysaccharidosis type II [MPS II]). However, patients in some countries face challenges accessing treatments owing to limited availability of locally licensed, approved drugs.

Ethical issues involving fertility preservation for transgender youth.

Purpose: To investigate ethical issues associated with fertility preservation (FP) in transgender youth based on reports of patients and their parents.

Methods: Our qualitative study involved in-person interviews with 54 subjects (35 patients and 19 parents). Interviews were audio recorded, transcribed, and verified.

Plus ça change: Renée Fox and the Sociology of Organ Replacement Therapy.

Rereading Renée C. Fox's "A Sociological Perspective on Organ Transplantation and Hemodialysis," published in 1970, one is likely to be struck more by continuity than by change. The most pressing of the social, policy, and ethical concerns that Fox raised remain problematic fifty years later.

A Descriptive Study of Decision-Making Conversations during Pediatric Intensive Care Unit Family Conferences.

Background: Little is known about how decision-making conversations occur during pediatric intensive care unit (PICU) family conferences (FCs).

Objective: Describe the decision-making process and implementation of shared decision making (SDM) during PICU FCs.

Design: Observational study.

"We want to do everything": how parents represent their experiences with maternal-fetal surgery online.

Objective: There is little available evidence on how patients make decisions regarding maternal-fetal surgery. We studied online patient narratives for insight on how pregnant women and their partners consider such decisions.

Study Design: We used Google search strings and a purposive snowball method to locate patient blogs.

Ethical Challenges Confronted When Providing Nusinersen Treatment for Spinal Muscular Atrophy.

The US Food and Drug Administration's December 2016 approval of nusinersen for the treatment of patients with all subtypes of spinal muscular atrophy ushered in a new era for patients with spinal muscular atrophy, their families, and all those involved in their care. The extreme cost of the medication and the complicated logistical requirements for administering nusinersen via lumbar puncture have created practical challenges that raise important ethical considerations. We discuss 6 challenges faced at the institutional level in the United States: cost, limited evidence, informed consent, treatment allocation, fair distribution of responsibilities, and transparency with stakeholders.

The Process and Impact of Stakeholder Engagement in Developing a Pediatric Intensive Care Unit Communication and Decision-Making Intervention.

Stakeholder-developed interventions are needed to support pediatric intensive care unit (PICU) communication and decision-making. Few publications delineate methods and outcomes of stakeholder engagement in research. We describe the process and impact of stakeholder engagement on developing a PICU communication and decision-making support intervention.

Palliative Sedation With Propofol for an Adolescent With a DNR Order.

Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious.

Training the Workforce: Description of a Longitudinal Interdisciplinary Education and Mentoring Program in Palliative Care.

Context: The rapid increase in demand for palliative care (PC) services has led to concerns regarding workforce shortages and threats to the resiliency of PC teams.

Objectives: To describe the development, implementation, and evaluation of a regional interdisciplinary training program in PC.

Methods: Thirty nurse and physician fellows representing 22 health systems across the Chicago region participated in a two-year PC training program.

Communication During Pediatric Intensive Care Unit Family Conferences: A Pilot Study of Content, Communication, and Parent Perceptions.

While there is a robust literature describing family conferences (FCs) in adult intensive care units (ICUs), less information exists about FCs in pediatric ICUs (PICUs). We conducted a pilot study to describe the focus of discussion, communication patterns of health care team members (HTMs) and parents, and parents' perspectives about clinician communication during PICU FCs. We analyzed data from 22 video- or audiorecorded PICU FCs and post-FC questionnaire responses from 27 parents involved in 18 FCs.

A Pediatrician's View.

The experiences of individuals with intersex conditions include considerable abuse at the hands of medical personnel. Despite changes in expert opinion about full disclosure of the nature of each patient's condition and recommendations to defer cosmetic surgical interventions, we do not know how much actual practice has changed over several decades. Moreover, discrepancies continue between the views of who have these conditions and medical practitioners, especially about preventing cancer and retaining gonads for the purpose of providing "natural" hormone production.