Patients Discharged "Against Medical Advice" More than Once: A Cross-Sectional Descriptive Analysis of a Vulnerable Population.

Background: Patients who have been discharged "against medical advice" (AMA) are at increased risk of morbidity and mortality, but there is little research about patients who have had more than one AMA discharge.

Objective: We aimed to describe the socio-demographic and clinical characteristics of patients with more than one AMA discharge.

Design: We conducted a cross-sectional, retrospective chart review of a sample of adult patients who were discharged AMA more than once between 2016 and 2021 and abstracted detailed characteristics of this sample.

Social media use by patients with hypermobile Ehlers-Danlos syndrome.

Background: Patients with uncommon genetic conditions often face limited in-person resources for social and informational support. Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare or underdiagnosed hereditary disorder of the connective tissue, and like those with similar diseases, patients with hEDS have begun to turn to social media in search of care and community. The aims of our study were to understand the usage habits and perceptions of utility of social media use for patients with hEDS in order to formulate suggestions for how clinicians may best engage these and similar patient populations about this topic.

Ethical and practical considerations of pediatric refusal in clinical anesthesia: An educational review.

Children commonly refuse induction of anesthesia. Anesthesia providers must then decide whether to honor the child's dissent or to proceed over objection. In some circumstances, a forced induction involves restraining the child, incurring both practical and ethical harms to the patient-provider encounter.

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

Background: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs.

Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

Objectives: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs.

Participants: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs.

Design/methods: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus.

Content Analysis of Emoji and Emoticon Use in Clinical Texting Systems.

Importance: Emoji and emoticons are quickly becoming an omnipresent feature of virtual communication. As health care systems increasingly adopt clinical texting applications, it is critical to understand how clinicians use these ideograms with colleagues and how it may affect their interactions.

Objective: To evaluate the functions that emoji and emoticons serve in clinical text messages.

Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research.

Patients' strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers-Danlos Syndrome.

Purpose: Chronic pain is a common feature of hypermobile Ehlers-Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. The objective of the present study was to explore the use of numeric pain assessment in individuals with hEDS, from a patient-centered perspective.

Materials And Methods: Our analysis is based on in-depth qualitative interviews.

Disability or Death: A Focused Review of Informed Consent in Pediatric Neurosurgery.

The management of pediatric neurosurgical disease often requires families to choose between long-term disability and premature death. This decision-making is codified by informed consent. In practice, decision-making is heavily weighted toward intervening to prevent death, often with less consideration of the realities of long-term disability.

Exploring Ethical Dimensions of Physician Involvement in Requests for Organ Donation in Pediatric Brain Death.

Pediatric organ transplantation remains a life-saving therapy, with donated organs being absolutely scarce resources. Efforts to both increase pediatric organ donation authorization by families of children declared dead by neurologic criteria and mitigate perception of conflicts of interest have resulted in frequent exclusion of physicians from this process. This article provides of focused review of pediatric organ donation in the setting of brain death, explores the breadth of consequences of physician exclusion in donation authorization requests, and provides an ethical framework defending physician involvement in the organ donation process for this patient population.

Use of complementary and alternative medicine by patients with hypermobile Ehlers-Danlos Syndrome: A qualitative study.

Background: Patients with hypermobile Ehlers-Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remain unclear. The purpose of this qualitative study was to understand patients' personal experiences with CAM and its role in their symptom management.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

Objective: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

Study Design: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel.

Sexuality Among Adolescents With Intellectual Disability: Balancing Autonomy and Protection.

Adolescents and young adults living with intellectual disability (ID) have made significant advancements integrating into multiple aspects of western society, but there has been less progress with regards to sexual health. While advocating for individuals with ID to live life to the fullest, pediatricians have practical concerns regarding the ability to consent to sex as well as avoid coercion and manipulation in sexual encounters. This has led to tension between supporting the autonomy of a patient with ID while protecting them from harm.

Spiritual Care Assessment and Intervention (SCAI) for Adult Outpatients With Advanced Cancer and Caregivers: A Pilot Trial to Assess Feasibility, Acceptability, and Preliminary Effects.

Background: Although religion and spirituality are important to adults with cancer and their family caregivers, few studies have tested spiritual care interventions in the outpatient setting.

Aim: To determine the feasibility, acceptability, and preliminary effects of chaplain-delivered, semi-structured spiritual care to adult outpatients with advanced cancer and their caregivers.

Design: In this pre/post pilot intervention study, board-certified chaplains utilized the Spiritual Care Assessment and Intervention (SCAI) framework during 4 individual sessions.

Narrative review of prognosis related communication in advanced cancer patients.

Objective: In this review we will focus on doctor-patient communication as one of the most important modifiable factors which may have a significant impact especially on the important transition between the ambulatory and terminal phases of cancer.

Background: High quality communication about prognosis for cancer patients is a critical component of advance care planning, and it plays a critical role among all the complex factors that affect end of life care decisions. In this review we focus on doctor-patient communication as the most important modifiable factor impacting the transitional period between the ambulatory phase and the terminal phase of cancer.

High Moral Distress in Clinicians Involved in the Care of Undocumented Immigrants Needing Dialysis in the United States.

To understand clinicians' perspectives on dialysis care of undocumented immigrants. A 21-item Internet-based survey using Survey Monkey was sent to 765 physicians and nurses at a safety-net hospital located in Indianapolis, IN. Moral distress thermometer score was used to assess moral distress (MD).

Distress and the Long-Stay Pediatric Intensive Care Unit Admission: A Longitudinal Study of Parents and the Medical Team.

Prolonged critical illness in children has emotional consequences for both parents and providers. In this observational cohort study, we longitudinally surveyed anxiety and depression in parents and moral distress in pediatric intensive care unit (PICU) providers (attendings, fellows, and bedside registered nurses) and explored their trajectories and relationships. Anxiety/depression and provider moral distress were measured using the Hospital Anxiety and Depression Scale and the Moral Distress Thermometer, respectively.

What Do Patients and Parents Say About Parents' Ability to Choose Early Genital Surgery for Girls with Congenital Adrenal Hyperplasia?

Purpose: We assessed opinions of females with congenital adrenal hyperplasia and their parents about the parent's ability to choose early genital surgery for these patients.

Materials And Methods: We conducted an online survey of females with congenital adrenal hyperplasia (46XX,16+ years old) and independently recruited parents (2019-2020) diagnosed in first year of life in the United States. A multidisciplinary medical team, women with congenital adrenal hyperplasia and parents drafted the survey.

Mitigating ethical conflict and moral distress in the care of patients on ECMO: impact of an automatic ethics consultation protocol.

Aims: This study evaluates a protocol for early, routine ethics consultation (EC) for patients on extracorporeal membrane oxygenation (ECMO) to support decision-making in the context of clinical uncertainty with the aim of mitigating ethical conflict and moral distress.

Methods: We conducted a single-site qualitative analysis of EC documentation for all patients receiving ECMO support from 15 August 2018 to 15 May 2019 (n=68). Detailed analysis of 20 ethically complex cases with protracted ethics involvement identifies four key ethical domains: limits of prognostication, bridge to nowhere, burden of treatment and system-level concerns.