Trauma-Informed Care as a Universal Precaution: A Brief, Case-Based, Educational Primer Featuring Role-Playing and Individual Self-Reflection Exercises.

ABSTRACT: Despite its growing popularity, the implementation of Trauma-Informed Care (TIC) in standard medical practices remains insufficient. A workshop, featuring role-playing scenarios and individual self-reflection exercises, was developed to enhance compassion among health care providers. The workshop was created by a multidisciplinary team of community pediatricians, pediatric intensivists, psychologists, and palliative care physicians, was structured around key elements and principles of TIC, and was based on actual patient encounters. The 90-minute session included didactics, role-playing, writing and self-reflection exercises, and large-group debriefings, and it was presented at two academic meetings. It is currently available as an open-sourced, freely accessible website. The workshop was attended by individuals with varying levels of training and experience. Of approximated 80 participants, 39 responded to surveys about baseline knowledge and workshop satisfaction, and 24 completed self-perceived pre- and postknowledge surveys. Nearly 90% had limited prior exposure to TIC. All rated the workshop highly, with no significant differences based on workshop facilitation. Nearly 95% felt that they learned something that would impact their day-to-day practices. Self-perceived pre-post knowledge showed statistically significant improvements. This workshop is feasible and can potentially increase health care professionals' capacity to care, decrease moral injury, and alleviate burnout from difficult cases.

Early and often: Promoting early integration of pediatric palliative care for seriously ill children with cancer.

Pediatric palliative care, despite substantial overlap with its adult counterpart, is also distinct in some ways. Serious illness and comorbidities are less common in children, for whom there is a stronger presumption toward aggressive treatment. This, along with impressive cure rates for pediatric cancer, can help explain why children typically survive for a longer period of time following initial palliative care consultation. Though many of the studies demonstrating benefit of integration of palliative care early in the course of the disease for seriously ill patients rather than near or at end-of-life were conducted in adults, similar findings have been documented for children with serious illness. Several barriers to early integration exist, however, including misperceptions that palliative care constitutes "giving up" and concerns about potential role confusion with the primary team. By directly addressing these misperceptions and challenges, it is possible for palliative care and oncology to work in constructive partnerships that will benefit children with cancer and their families.

Responding to Parental Requests for Nondisclosure to Patients of Diagnostic and Prognostic Information in the Setting of Serious Disease.

Learning that one's child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their child's hope, cause emotional pain, or exceed the child's capacity for understanding. Faced with competing obligations of truth-telling to their patient and respect for parental wishes, pediatricians may be unsure how to proceed. This clinical report examines ethical duties and legal considerations, providing practical and culturally sensitive case-based guidance for clinicians to approach parental requests for nondisclosure of diagnostic or prognostic information.

Clinical Guidelines for Voluntarily Stopping Eating and Drinking (VSED).

As the care of patients with serious illness increasingly emphasizes clarifying goals of care, exploring quality of life, and minimizing patients' symptom burden, voluntarily stopping eating and drinking (VSED) has emerged as a topic of increasing interest for patients who face a diminishing quality of life. It is an option for those with serious illness that is legal in every state in the country, but for which there are few published comprehensive guidelines-and none specific to the American medical system-even as public awareness and the number of inquiries regarding this action increase. In addition to the ethical questions raised by the practice and support of VSED, there are also clinical, logistical, institutional, social, religious, spiritual, and administrative considerations for clinicians who are asked to respond to patients' inquiries about VSED and who discuss this option in end-of-life care. With these clinical guidelines, we seek to provide practical recommendations for clinicians who consider providing support to their patients who contemplate and/or undertake this effort to hasten death.

Differences in US Regional Healthcare Allocation Guidelines During the COVID-19 Pandemic.

BACKGROUND: Hospitals faced unprecedented scarcity of resources without parallel in modern times during the COVID-19 pandemic. This scarcity led healthcare systems and states to develop or modify scarce resource allocation guidelines that could be implemented during "crisis standards of care" (CSC). CSC describes a significant change in healthcare operations and the level of care provided during a public health emergency. OBJECTIVE: Our study provides a comprehensive examination of the latest CSC guidelines in the western region of the USA, where Alaska and Idaho declared CSC, focusing on ethical issues and health disparities. DESIGN: Mixed-methods survey study of physicians and/or ethicists and review of healthcare system and state allocation guidelines. PARTICIPANTS: Ten physicians and/or ethicists who participated in scarce resource allocation guideline development from seven healthcare systems or three state-appointed committees from the western region of the USA including Alaska, California, Idaho, Oregon, and California. RESULTS: All sites surveyed developed allocation guidelines, but only four (40%) were operationalized either statewide or for specific scarce resources. Most guidelines included comorbidities (70%), and half included adjustments for socioeconomic disadvantage (50%), while only one included specific priority groups (10%). Allocation tiebreakers included the life cycle principle and random number generators. Six guidelines evolved over time, removing restrictions such as age, severity of illness, and comorbidities. Additional palliative care (20%) and ethics (50%) resources were planned by some guidelines. CONCLUSIONS: Allocation guidelines are essential to support clinicians during public health emergencies; however, significant deficits and differences in guidelines were identified that may perpetuate structural inequities and racism. While a universal triage protocol that is equally accepted by all communities is unlikely, the lack of regional agreement on standards with justification and transparency has the potential to erode public trust and perpetuate inequity.

Congruent Communication: Addressing Culture and Care for a Seriously Ill Rohingya Infant.

Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans. Discussion of this case helps to illustrate the cultural factors, ethical challenges, and systems-level issues that can arise for medical teams in seeking to promote patient-centered care that respects family values while also honoring the principle of nonmaleficience.

Evolution of Investigating Informed Assent Discussions about CPR in Seriously Ill Patients.

CONTEXT: Outcomes after cardiopulmonary resuscitation (CPR) remain poor. We have spent 10 years investigating an "informed assent" (IA) approach to discussing CPR with chronically ill patients/families. IA is a discussion framework whereby patients extremely unlikely to benefit from CPR are informed that unless they disagree, CPR will not be performed because it will not help achieve their goals, thus removing the burden of decision-making from the patient/family, while they retain an opportunity to disagree. OBJECTIVES: Determine the acceptability and efficacy of IA discussions about CPR with older chronically ill patients/families. METHODS: This multi-site research occurred in three stages. Stage I determined acceptability of the intervention through focus groups of patients with advanced COPD or malignancy, family members, and physicians. Stage II was an ambulatory pilot randomized controlled trial (RCT) of the IA discussion. Stage III is an ongoing phase 2 RCT of IA versus attention control in in patients with advanced chronic illness. RESULTS: Our qualitative work found the IA approach was acceptable to most patients, families, and physicians. The pilot RCT demonstrated feasibility and showed an increase in participants in the intervention group changing from "full code" to "do not resuscitate" within two weeks after the intervention. However, Stages I and II found that IA is best suited to inpatients. Our phase 2 RCT in older hospitalized seriously ill patients is ongoing; results are pending. CONCLUSIONS: IA is a feasible and reasonable approach to CPR discussions in selected patient populations.

Pediatric Hospice and Palliative Care Services and Needs Across the Northwest United States.

CONTEXT: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. OBJECTIVES: To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition. METHODS: Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis. RESULTS: Sixty-four participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47). CONCLUSIONS: Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education.

Social Determinants of Health May Predict End of Life Portable Orders for Life Sustaining Treatment Form Completion and Treatment Selections.

BACKGROUND: End of life (EOL) care planning is important for aging adults given the growing prevalence of chronic medical conditions in the US. The Portable Orders for Life Sustaining Treatment (POLST) program promotes communication between clinicians and patients with advanced illness about EOL treatment preferences. Despite growing resources for EOL care, utilization remains unequal based on social determinants of health (SDOH), including race, language, urbanization, and education. We evaluated the relationship between POLST form selections and completion rates and SDOH. METHODS: Oregon POLST Registry and American Community Survey data from 2013 to 2017 were analyzed retrospectively. POLST form completion rates and selections, and various SDOH, including age, income, insurance status, urbanization, etc. were recorded. Data were merged based on ZIP codes and analyzed using χ2 or Wilcoxon-Mann-Whitney tests. Logistic regression was performed. RESULTS: 127,588 POLST forms from 319 ZIP codes were included. POLST form completion rates were highest among urban ZIP codes, and urban registrants more often selected CPR and full treatment. ZIP codes with higher incomes tended to select CPR. ZIP codes with higher rates of private insurance completed POLST forms, and selected CPR and full treatment more frequently. ZIP codes with higher rates of Bachelor's degrees (or higher) completed POLST forms and selected full treatment more frequently. CONCLUSIONS: Various SDOH-specifically, urbanization, insurance status, income level and educational level achieved-may influence POLST form completion rates and selections. The expanding socioeconomic diversity and growth of urban communities, highlight the need for broader access to EOL planning and POLST.

Epileptologists infrequently discuss the risk of intubation with patients with epilepsy in the United States.

BACKGROUND: The aim of this study was to assess how frequently epileptologists discuss advance directives regarding intubation and mechanical ventilation with patients with epilepsy. A secondary aim was to understand the attitudes of neurologists toward discussion and implementation of such advance directives in epilepsy care. METHODS: An online study survey was developed and distributed by email invitation to 210 neurologists at academic epilepsy and neurophysiology programs in the United States in December 2018. RESULTS: Seventy-seven neurologists, 95% with a clinical practice focus of epilepsy in adults, participated in the study (37% response rate). Three percent reported discussion of risk of intubation with "every" or a "majority" of patients newly diagnosed with epilepsy. Seventy-seven percent indicated a neurologist was the "most appropriate provider to have discussions concerning mechanical ventilation with patients with epilepsy." Twenty-five percent "strongly agreed" that "every patient with epilepsy should have an advance directive specifying their preferences concerning mechanical ventilation in the setting of treatment for seizures." A majority favored overriding a hypothetical patient's advance directive specifying no intubation in the context of airway compromise as a consequence of status epilepticus and its treatment. CONCLUSIONS: Epileptologists infrequently discuss the risk of intubation and mechanical ventilation with patients with epilepsy. Many felt that such discussions are unnecessary with most patients, but also best led by a neurologist. Neurologists with expertise in epilepsy may favor overriding advance directives in the setting of status epilepticus. Further data is needed surrounding discussion and implementation of advance care planning in patients with epilepsy.

Ethical Considerations in Pediatricians' Use of Social Media.

Increasing use of social media by patients and clinicians creates opportunities as well as dilemmas for pediatricians, who must recognize the inherent ethical and legal complexity of these communication platforms and maintain professionalism in all contexts. Social media can be a useful tool in the practice of medicine by educating both physicians and patients, expanding access to health care, identifying high-risk behaviors, contributing to research, promoting networking and online support, enhancing advocacy, and nurturing professional compassion. At the same time, there are confidentiality, privacy, professionalism, and boundary issues that need to be considered whenever potential interactions occur between physicians and patients via social media. This clinical report is designed to assist pediatricians in identifying and navigating ethical issues to harness the opportunities and avoid the pitfalls of social media.

Top Ten Tips Palliative Care Clinicians Should Know About Medical Decision-Making Capacity Assessment.

Palliative care (PC) clinicians treat seriously ill patients who are at increased risk for compromised decision-making capacity (DMC). These patients face profound and complex questions about which treatments to accept and which to decline. PC clinicians, therefore, have the especially difficult task of performing thorough, fair, and accurate DMC assessments in the face of the complex effects of terminal illness, which may be complicated by fluctuating acute medical conditions, mental illness, or cognitive dysfunction. This study, written by a team of clinicians with expertise in PC, ethics, psychiatry, pediatrics, and geriatrics, aims to provide expert guidance to PC clinicians on best practice for complex DMC assessment.

A Mixed-Methods Quasi-Experimental Study on Perspectives Among Physicians and Nurses Regarding Use of Palliative Care Teams in the Pediatric Intensive Care Unit After Out-of-Hospital Cardiac Arrest.

BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement. AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA. DESIGN: Mixed-methods quasi-experimental study. PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU. RESULTS: Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death. CONCLUSIONS: Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.

POLST Signature Requirements: Responding With Compassion While Ensuring Informed Consent.

The majority of states require the signature of a surrogate decision maker on a POLST form for a patient who lacks decisional capacity. While commendable in its intention to ensure informed consent, in some cases this may lead the surrogate to feel that they are signing their loved one's "death warrant," adding to their emotional and spiritual distress. In this paper we argue that such a signature should be recommended rather than required, as it is neither a sufficient nor necessary condition of informed consent. Additional steps-such as requiring the attestation and documentation of the signing health care professional that verbal consent was fully informed and voluntary-can achieve the ultimate goal of respecting patient autonomy without adding to the surrogate's burden.

Evidence for hypoxia increasing the tempo of evolution in glioblastoma.

BACKGROUND: Tumour hypoxia is associated with metastatic disease, and while there have been many mechanisms proposed for why tumour hypoxia is associated with metastatic disease, it remains unclear whether one precise mechanism is the key reason or several in concert. Somatic evolution drives cancer progression and treatment resistance, fuelled not only by genetic and epigenetic mutation but also by selection from interactions between tumour cells, normal cells and physical micro-environment. Ecological habitats influence evolutionary dynamics, but the impact on tempo of evolution is less clear. METHODS: We explored this complex dialogue with a combined clinical-theoretical approach by simulating a proliferative hierarchy under heterogeneous oxygen availability with an agent-based model. Predictions were compared against histology samples taken from glioblastoma patients, stained to elucidate areas of necrosis and TP53 expression heterogeneity. RESULTS: Results indicate that cell division in hypoxic environments is effectively upregulated, with low-oxygen niches providing avenues for tumour cells to spread. Analysis of human data indicates that cell division is not decreased under hypoxia, consistent with our results. CONCLUSIONS: Our results suggest that hypoxia could be a crucible that effectively warps evolutionary velocity, making key mutations more likely. Thus, key tumour ecological niches such as hypoxic regions may alter the evolutionary tempo, driving mutations fuelling tumour heterogeneity.

Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls.

Female genital mutilation or cutting (FGM/C) involves medically unnecessary cutting of parts or all of the external female genitalia. It is outlawed in the United States and much of the world but is still known to occur in more than 30 countries. FGM/C most often is performed on children, from infancy to adolescence, and has significant morbidity and mortality. In 2018, an estimated 200 million girls and women alive at that time had undergone FGM/C worldwide. Some estimate that more than 500 000 girls and women in the United States have had or are at risk for having FGM/C. However, pediatric prevalence of FGM/C is only estimated given that most pediatric cases remain undiagnosed both in countries of origin and in the Western world, including in the United States. It is a cultural practice not directly tied to any specific religion, ethnicity, or race and has occurred in the United States. Although it is mostly a pediatric practice, currently there is no standard FGM/C teaching required for health care providers who care for children, including pediatricians, family physicians, child abuse pediatricians, pediatric urologists, and pediatric urogynecologists. This clinical report is the first comprehensive summary of FGM/C in children and includes education regarding a standard-of-care approach for examination of external female genitalia at all health supervision examinations, diagnosis, complications, management, treatment, culturally sensitive discussion and counseling approaches, and legal and ethical considerations.

Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force.

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.

The Ethics of Creating a Resource Allocation Strategy During the COVID-19 Pandemic.

The coronavirus disease 2019 pandemic has affected nearly every aspect of medicine and raises numerous moral dilemmas for clinicians. Foremost of these quandaries is how to delineate and implement crisis standards of care and, specifically, how to consider how health care resources should be distributed in times of shortage. We review basic principles of disaster planning and resource stewardship with ethical relevance for this and future public health crises, explore the role of illness severity scoring systems and their limitations and potential contribution to health disparities, and consider the role for exceptionally resource-intensive interventions. We also review the philosophical and practical underpinnings of crisis standards of care and describe historical approaches to scarce resource allocation to offer analysis and guidance for pediatric clinicians. Particular attention is given to the impact on children of this endeavor. Although few children have required hospitalization for symptomatic infection, children nonetheless have the potential to be profoundly affected by the strain on the health care system imposed by the pandemic and should be considered prospectively in resource allocation frameworks.