Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease.

PURPOSE OF REVIEW: Paediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life participation which advanced kidney disease can impose. To date, palliative care resources have been underutilized in paediatric nephrology. This review will highlight recent literature targeting the engagement and life participation of children with advanced kidney disease through implementation of novel palliative care approaches and propose directions for future research. RECENT FINDINGS: Children with advanced kidney disease and their families highly value incorporation of their perspectives, particularly on life participation, within care plan development; but what it means to participate in life can be variable, and clinicians need improved tools to ascertain and incorporate these perspectives. Novel palliative care interventions developed for application in comparable disease states offer potential opportunities for paediatric nephrologists to support this goal. SUMMARY: Children with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.

Pediatric Death by Neurologic Criteria: The Ever-Changing Landscape and the Expanding Role of Palliative Care Professionals.

Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric palliative care providers' effectiveness in this role, this article elucidates the clinical determination of DNC and the evolution of the ethical and legal controversies surrounding DNC. Conceptual definitions of death used in the context of DNC have been and continue to be debated amongst academicians, and children's families often have their own concept of death. Increasingly, families have brought legal cases challenging the definition of death, arguing for a right to refuse examination to diagnose DNC, and/or voicing religious objections. We describe these conceptual definitions and legal challenges then explore some potential reasons why families may dispute a determination of DNC. We conclude that working with patients, families, and healthcare providers facing DNC carries inherent and unique challenges suited to intervention by interdisciplinary palliative care teams.

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD.

Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. PPC is an evolving field that strives to (1) relieve physical, psychologic, social, practical, and existential suffering; (2) improve quality of life; (3) facilitate decision making; and (4) assist with care coordination in children with life-threatening or life-shortening conditions. Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases; however, similar integration has not occurred in pediatric nephrology. This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and introduce future opportunities for study.

An ethical analysis of obesity as a determinant of pediatric heart transplant candidacy.

BACKGROUND: Inclusion of BMI as criterion in the determination of heart transplant candidacy in children is a clinical and ethical challenge. Childhood obesity is increasing and children with heart disease are not spared. Currently, many adult heart transplant centers consider class II obesity and higher (BMI > 35 kg/m2 ) to be a relative contraindication for transplantation due to risk of poor outcome after transplant. No national guidelines exist regarding consideration of BMI in pediatric heart transplant and outcomes data are limited. This leaves decisions about transplant candidacy in obese pediatric patients to individual institutions or on a case-by-case basis, allowing for bias and inequity. METHODS: We review (a) the prevalence of childhood obesity, including among heart transplant candidates, (b) the lack of existing BMI guidelines, and (c) relevant literature on BMI and pediatric heart transplant outcomes. We discuss the ethical considerations of using obesity as a criterion using the principles of utility, justice, and respect for persons. RESULTS: Existing transplant outcomes data do not show that obese children have different or poor enough outcomes compared to non-obese children to warrant exclusion. Moreover, obesity in the United States is unequally distributed by race and socioeconomic status. Children already suffering from health disparities are therefore doubly penalized if obesity denies them access to life-saving transplant. CONCLUSION: Insufficient data exist to support using any BMI cutoff as an absolute contraindication for heart transplant in children. Attention should be paid to health equity issues when considering excluding a patient for transplant based on obesity.

How Should Refusal of Tracheostomy as Part of an Adolescent's Perioperative Planned Intubation Be Regarded?

Here we present a case of a patient in terminal respiratory failure refusing to consent to emergent tracheostomy in the setting of an anticipated difficult intubation. We examine ethical concerns that arise from deviations from the standard of care in the operative setting and the anesthesiologist's sense of culpability. Finally, we will review the ethical arguments and guidelines that support anesthesiologists' participation in palliative operative procedures when limitations on resuscitation are in place.

Ethical Guidance for Selecting Clinical Trials to Receive Limited Space in an Immunotherapy Production Facility.

Our aims are to (1) set forth a multiprinciple system for selecting among clinical trials competing for limited space in an immunotherapy production facility that supplies products under investigation by scientific investigators; (2) defend this system by appealing to justice principles; and (3) illustrate our proposal by showing how it might be implemented. Our overarching aim is to assist manufacturers of immunotherapeutic products and other potentially breakthrough experimental therapies with the ethical task of prioritizing requests from scientific investigators when production capacity is limited.

Controversy About Dialysis for an Adolescent.

For patients on dialysis, 1 frequent cause of death is their voluntary decision to discontinue dialysis. Such decisions raise complex questions when the patient is a competent adult. The decisions are even more complex when the patient is an adolescent. In this article, we present a case in which a 17-year-old adolescent decided that she no longer wished to undergo dialysis through her fistula. Her doctors thought that dialysis using any other technique would be too dangerous. Four experts in pediatric nephrology, bioethics, and palliative care discuss this decision and the different ways that the health care team might respond.

From protection to entitlement: selecting research subjects for early phase clinical trials involving breakthrough therapies.

Our goals are to (1) set forth and defend a multiprinciple system for selecting individuals who meet trial eligibility criteria to participate in early phase clinical trials testing chimeric antigen receptor (CAR T-cell) for acute lymphoblastic leukaemia when demand for participation exceeds spaces available in a trial; (2) show the relevance of these selection criteria to other breakthrough experimental therapies; (3) argue that distinct distributive justice criteria apply to breakthrough experimental therapies, standard research and healthcare and (4) argue that as evidence of benefit increases, the emphasis of justice in research shifts from protecting subjects from harm to ensuring fair access to benefits.

Who should get the last PICU bed?

Administrators sometimes face ethical dilemmas about the allocation of institutional resources. One such situation is when elective surgery cases require reserved ICU beds and the ICU is full. Such situations arise frequently in children's hospitals today. They are sometimes complicated by questions about whether every patient in the ICU belongs there. We present such a situation and responses from Mark Del Becarro, Vice President for Medical Affairs at Seattle Children's Hospital; Aaron Wightman, a nephrology fellow and bioethicist at Seattle Children's Hospital; and Emily Largent, a doctoral student in the joint JD/PhD Program in Health Policy at Harvard University.