Management dilemmas in pediatric nephrology: moving from friction to flourishing in "challenging" cases.

BACKGROUND: The circumstances surrounding chronic kidney disease and its impact on families can be complex and difficult to navigate, leading to these cases being labeled "challenging." CASE PRESENTATION: We present the case of an adolescent with kidney failure due to unremitting systemic illness and multiple complications ultimately resulting in the family's request to forgo dialysis. Medical team members wrestled with meeting the family's needs among internal and external constraints. CONCLUSION: Past experiences, systemic inequities, differing perspectives, and consequential decision-making within individual belief systems can lead to friction between and among medical team members and families. As pediatric nephrologists, we must shift our focus from the "challenging" patient or family to addressing what is challenging their ability to flourishing.

An ethical analysis of obesity as a contraindication to pediatric liver transplant candidacy.

Childhood obesity is becoming more prevalent in the United States (US) and worldwide, including among children in need of a liver transplant. Unlike with heart and kidney failure, end-stage liver disease (ESLD) is unique in that no widely available medical technology can re-create the life-sustaining function of a failing liver. Therefore, delaying a life-saving liver transplant for weight loss, for example, is much harder, if not impossible for many pediatric patients, especially those with acute liver failure. For adults in the United States, guidelines consider obesity a contraindication to liver transplant. Although formal guidelines are lacking in children, many pediatric transplant centers also consider obesity a contraindication to a pediatric liver transplant. Variations in practice among pediatric institutions may result in biased and ad hoc decisions that worsen healthcare inequities. In this article, we define and report the prevalence of childhood obesity among children with ESLD, review existing guidelines for liver transplant in adults with obesity, examine pediatric liver transplant outcomes, and discuss the ethical considerations of using obesity as a contraindication to pediatric liver transplant informed by the principles of utility, justice, and respect for persons.

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.

Beyond Autonomy: Ethics of Decision Making About Treatments for Kidney Failure at the Extremes of Age.

Decisions around initiating and forgoing treatments for kidney failure are complex, and contemporary approaches to medical decision making are designed to uphold patients' own preferences and values when there are multiple clinically reasonable treatment options. When patients do not have cognitive capacity to make their own decisions, these models can be adapted to support the previously expressed preferences of older adults and to promote open futures as autonomous persons for young children. Nonetheless, an autonomy-focused approach to decision making may not align with other overlapping values and needs of these groups. Dialysis profoundly shapes life experience. Values framing decisions about this treatment extend beyond independence and self-determination and vary between life stages. Patients at the extremes of age may place a strong emphasis on dignity, caring, nurturing, and joy. Models of decision making tailored to support an autonomous individual may also discount the role of family as not only surrogate decision makers but stakeholders whose lives and experience are interwoven with a patient's and will be shaped by their treatment decisions. These considerations underline a need to more flexibly incorporate a diversity of ethical frameworks to support medical decisions, especially for the very young and old, when facing complex medical decisions such as initiating or forgoing treatments for kidney failure.

An ethical analysis of obesity as a contraindication of pediatric kidney transplant candidacy.

The inclusion of body mass index (BMI) as a criterion for determining kidney transplant candidacy in children raises clinical and ethical challenges. Childhood obesity is on the rise and common among children with kidney failure. In addition, obesity is reported as an independent risk factor for the development of CKD and kidney failure. Resultantly, more children with obesity are anticipated to need kidney transplants. Most transplant centers around the world use high BMI as a relative or absolute contraindication for kidney transplant. However, use of obesity as a relative or absolute contraindication for pediatric kidney transplant is controversial. Empirical data demonstrating poorer outcomes following kidney transplant in obese pediatric patients are limited. In addition, pediatric obesity is distributed inequitably among groups. Unlike adults, most children lack independent agency to choose their food sources and exercise opportunities; they are dependent on their families for these choices. In this paper, we define childhood obesity and review (1) the association and impact of obesity on kidney disease and kidney transplant, (2) existing adult guidelines and rationale for using high BMI as a criterion for kidney transplant, (3) the prevalence of childhood obesity among children with kidney failure, and (4) the existing literature on obesity and pediatric kidney transplant outcomes. We then discuss ethical considerations related to the use of obesity as a criterion for kidney transplant.

Ethical analysis examining the prioritisation of living donor transplantation in times of healthcare rationing.

The transplant community has faced unprecedented challenges balancing risks of performing living donor transplants during the COVID-19 pandemic with harms of temporarily suspending these procedures. Decisions regarding postponement of living donation stem from its designation as an elective procedure, this despite that the Centers for Medicare and Medicaid Services categorise transplant procedures as tier 3b (high medical urgency-do not postpone). In times of severe resource constraints, health systems may be operating under crisis or contingency standards of care. In this manuscript, the United Network for Organ Sharing Ethics Workgroup explores prioritisation of living donation where health systems operate under contingency standards of care and provide a framework with recommendations to the transplant community on how to approach living donation in these circumstances.To guide the transplant community in future decisions, this analysis suggests that: (1) living donor transplants represent an important option for individuals with end-stage liver and kidney disease and should not be suspended uniformly under contingency standards, (2) exposure risk to SARS-CoV-2 should be balanced with other risks, such as exposure risks at dialysis centres. Because many of these risks are not quantifiable, donors and recipients should be included in discussions on what constitutes acceptable risk, (3) transplant hospitals should strive to maintain a critical transplant workforce and avoid diverting expertise, which could negatively impact patient preparedness for transplant, (4) transplant hospitals should consider implementing protocols to ensure early detection of SARS-CoV-2 infections and discuss these measures with donors and recipients in a process of shared decision-making.

Caregiver COVID-19 vaccination for solid organ transplant candidates.

An increasing proportion of transplant centers have implemented a mandate for vaccination against COVID-19 for solid organ transplant candidates. There has been comparatively little exploration of the ethical considerations of mandating vaccination of a candidate's primary caregiver, despite a high risk of transmission given the close nature of contact between the candidate and caregiver. We examine how a caregiver mandate can improve overall utility in organ allocation, particularly in circumstances where vaccine effectiveness at preventing transmission and serious disease is low among recipients but high in caregivers. Our analysis reveals how sensitive such mandates must be to the evolving circumstances of disease severity, transmissibility, and vaccine effectiveness: as the facts change, the degree of benefit gained and therefore the degree of infringement on access to transplant and caregiver choice that is tolerated will likewise change.

Challenges to Shared Decision Making About Treatment of Advanced CKD: A Qualitative Study of Patients and Clinicians.

RATIONALE & OBJECTIVE: Greater understanding of the challenges to shared decision making about treatment of advanced chronic kidney disease (CKD) is needed to support implementation of shared decision making in clinical practice. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Patients aged≥65 years with advanced CKD and their clinicians recruited from 3 medical centers participated in semi-structured interviews. In-depth review of patients' electronic medical records was also performed. ANALYTICAL APPROACH: Interview transcripts and medical record notes were analyzed using inductive thematic analysis. RESULTS: Twenty-nine patients (age 73±6 years, 66% male, 59% White) and 10 of their clinicians (age 52±12 years, 30% male, 70% White) participated in interviews. Four themes emerged from qualitative analysis: (1) competing priorities-patients and their clinicians tended to differ on when to prioritize CKD and dialysis planning above other personal or medical problems; (2) focusing on present or future-patients were more focused on living well now while clinicians were more focused on preparing for dialysis and future adverse events; (3) standardized versus individualized approach to CKD-although clinicians tried to personalize care recommendations to their patients, the patients perceived their clinicians as taking a monolithic approach to CKD that was predicated on clinical practice guidelines and medical literature rather than the patients' lived experiences with CKD and personal values and goals; and (4) power dynamics-patients described cautiously navigating a power differential in their therapeutic relationship with their clinicians whereas clinicians seemed less attuned to these power dynamics. LIMITATIONS: Thematic saturation was based on patient interviews. Themes presented might incompletely reflect clinicians' perspectives. CONCLUSIONS: Efforts to improve shared decision making for treatment of advanced CKD will likely need to explicitly address differences between patients and their clinicians in approaches to decision making about treatment of advanced CKD and perceived power imbalances in the therapeutic relationship.

Considering a COVID-19 vaccine mandate for pediatric kidney transplant candidates.

The world continues to face the effects of the SARS-CoV-2 pandemic. COVID-19 vaccines are safe and effective in protecting recipients, decreasing the risk of COVID-19 acquisition, transmission, hospitalization, and death. Transplant recipients may be at greater risk for severe SARS-CoV-2 infection. As a result, transplant programs have begun instituting mandates for COVID-19 vaccine for transplant candidacy. While the question of mandating COVID-19 vaccine for adult transplant candidates has garnered attention in the lay and academic press, these discussions have not explicitly addressed children who may be otherwise eligible for kidney transplants. In this paper we seek to examine the potential ethical justifications of a COVID-19 vaccine mandate for pediatric kidney transplant candidacy through an examination of relevant ethical principles, analogous cases of the use of mandates, differences between adult and pediatric kidney transplant candidates, and the role of gatekeeping in transplant vaccine mandates. At present, it does not appear that pediatric kidney transplant centers are justified to institute a COVID-19 vaccine mandate for candidates. Finally, we will offer suggestions to be considered prior to the implementation of a COVID-19 vaccine mandate.

Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study.

BACKGROUND: To better support family-centered care surrounding dialysis initiation, greater understanding of caregiver experience is necessary. METHODS: Using thematic analysis, we conducted a secondary analysis of semi-structured interview data from a qualitative study of caregivers of children receiving dialysis recruited from 3 pediatric centers. Prominent themes in caregiver experience of caring for a child initiating dialysis were identified. RESULTS: Thirty-five caregivers participated. Three major themes emerged from qualitative analysis: (1) parenting disrupted - caregivers experienced an acute disruption in their parenting role due to the unexpected, emergent circumstances and vast information accompanying their child's diagnosis; (2) redefining parenting - caregivers sought to reestablish their innate parental role and foster their evolving medical provider role through reassurance that their child could survive, communication with the medical team, and engaging in care plan development; and (3) leveraging dual identities - to positively impact their child's experience and enable flourishing, caregivers leveraged their established caregiver role and newly realized medical provider role through voicing their perspectives, watching over their child's care, and preparing for future changes in their child's health. If caregivers' evolution was not nurtured and enabled, acute fluctuations in their child's care could contribute to future disruption and need to restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child's care. CONCLUSIONS: Improving delivery of family-centered care and support of caregivers at dialysis initiation will require directed efforts by nephrology care teams to foster caregiver evolution and resilience and respond to the family's changing experience of kidney disease. A higher resolution version of the Graphical abstract is available as Supplementary information.

Prevalence and Long-Term Outcomes of Solid Organ Transplant in Children with Intellectual Disability.

OBJECTIVES: To describe the prevalence and long-term outcomes of kidney, liver, and heart transplant for children with an intellectual disability. STUDY DESIGN: We performed a retrospective cohort analysis of children receiving a first kidney, liver, or heart-alone transplant in the United Network for Organ Sharing dataset from 2008 to 2017. Recipients with definite intellectual disability were compared with those possible/no intellectual disability. Kaplan-Meier survival estimates were calculated for graft and patient survival. Cox proportional hazard models were used to estimate the association between intellectual disability and graft and patient survival. RESULTS: Over the study period, children with definite intellectual disability accounted for 594 of 6747 (9%) first pediatric kidney-alone, 318 of 4566 (7%) first pediatric liver-alone, and 324 of 3722 (9%) first pediatric heart-alone transplant recipients. Intellectual disability was not significantly associated with patient or graft survival among liver and heart transplant recipients. Among kidney transplant recipients, definite intellectual disability was significantly associated with higher graft survival and lower patient survival, but the absolute differences were small. CONCLUSIONS: Children with intellectual disability account for 7%-9% of pediatric transplant recipients with comparable long-term outcomes to other pediatric recipients. These findings provide important empirical support for policies that include children with intellectual disability as transplant candidates.

Pediatric kidney transplant in undocumented immigrants: An American perspectives.

Kidney transplant in undocumented immigrants remains controversial. While in the United States the National Organ Transplant Act does not prohibit inclusion of these patients as transplant candidates, legislative and financial barriers and ethical concerns remain. The purpose of this article was to review the legal and financial barriers to kidney transplant for children with ESKD who are undocumented immigrants and consider arguments for and against inclusion of these children as kidney transplant candidates. While this discussion is largely restricted to the experience in the United States and its unique healthcare system, the themes and ideas may be more generalizable to the experience in many high-income countries. We conclude that access to kidney transplant is legal, ethically justifiable, and clearly in the best interest of these children. Transplant professionals should continue to advocate for changes in policy and greater resources to support these patients.

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.

Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale.

BACKGROUND: Caring for a child with kidney failure on dialysis profoundly impacts caregivers' lives, yet the depth of this burden is not well understood. The Paediatric Renal Caregiver Burden Scale (PR-CBS) is a recently validated instrument used to measure caregiver burden in this population. METHODS: We performed a cross-sectional study of caregiver burden for caregivers of children with kidney failure receiving dialysis at three pediatric centers. Caregivers completed the PR-CBS instrument as part of a larger qualitative study of caregiver experience. We performed descriptive statistics. T-tests were used to examine differences between dialysis modality and within key demographics. Multivariate linear regression was utilized to assess associations between significant factors and total score. RESULTS: Ten caregivers of children receiving peritoneal dialysis (PD) and 21 receiving hemodialysis (HD) participated. Total burden score and mean score for every domain was higher for caregivers of children on HD compared to PD. PR-CBS score was significantly associated with younger child age and married status in caregivers. In adjusted multivariate analysis, dialysis modality and married marital status were significantly associated with PR-CBS score. CONCLUSIONS: This study found that dialysis caregivers experience significant caregiver burden and demonstrates the utility of the PR-CBS in an American population. We found higher burdens among HD caregivers, younger children, and married caregivers. While these findings must be replicated on a larger scale, they suggest possible areas for targeted interventions to improve the quality of life of children with kidney failure and their families. A higher resolution version of the Graphical abstract is available as Supplementary information.

Vaccine ethics: an ethical framework for global distribution of COVID-19 vaccines.

This paper addresses the just distribution of vaccines against the SARS-CoV-2 virus and sets forth an ethical framework that prioritises frontline and essential workers, people at high risk of severe disease or death, and people at high risk of infection. Section I makes the case that vaccine distribution should occur at a global level in order to accelerate development and fair, efficient vaccine allocation. Section II puts forth ethical values to guide vaccine distribution including helping people with the greatest need, reducing health disparity, saving the most lives and promoting narrow social utility. It also responds to objections which claim that earlier years have more value than later years. Section III puts forth a practical ethical framework to aid decision-makers and compares it with alternatives.

Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination.

Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID.

Caregiver burden in pediatric dialysis.

In spite of improvements in expected survival, neurodevelopmental outcome, and quality of life, decision-making in neonatal dialysis remains controversial in high-resource countries. In part, this may be based upon the significant burdens experienced by the child, and also those experienced by the parents as caregivers. Emerging research offers a clearer description of the burdens experienced by dialysis caregivers worldwide. Caregiver burden represents an important area for nephrologists to advocate for patients and their families; however, nephrologists must also recognize the realities caregivers currently experience. Incorporation of caregiver burden into medical decision-making for children with end-stage kidney disease is necessary, but raises several ethical concerns.

Conflicts of interest in clinical ethics consults.

Although there is wide agreement that ethics consults are at risk for conflicts of interest (COIs), ethics consultants (ECs) have limited guidance with regard to how to identify and approach COIs. We aim to address these concerns and provide practical guidance. We will define and consider four categories of COIs: consult type, team composition, dual clinical roles and other concerns. We will define and consider six actions available for ECs to take in response to COIs: no action, disclosure only, obtaining a second opinion, referring to another EC, referring to an institutional ethics committee or seeking an outside consult. We will then propose a points-based algorithm for ECs to use to determine the appropriate response to COI. Finally, we will discuss the strengths and limitations of our proposed algorithm.

Health-related quality of life changes following renal transplantation in children.

BACKGROUND: Studies of HRQoL after kidney transplant have yielded conflicting results. We sought to assess the impact of kidney transplant on HRQoL. METHODS: We performed a retrospective study using the PedsQL3.0ESRD module during dialysis and at 3 and 12 months following kidney transplant in 56 recipients. For the entire cohort, we described HRQoL scores at each time point and used ANOVA models to test for associations between demographic and transplant-related factors and post-transplant scores. We used linear mixed models to investigate interactions between transplant and demographic and transplant-related factors and to estimate differences between mean pre- and post-transplant scores. Longitudinal changes in HRQoL were assessed by t test. RESULTS: We found increases in all mean total scores, including subscales, at each assessed time period from dialysis to 3 months post-transplant to 12 months post-transplant. Post-transplant total scores did not differ by gender, race, proximity to hospital, allograft source, or dialysis modality, but did differ by recipient age. Among participants with both pre- and post-transplant observations, total scores increased for both recipients and parent-proxies. CONCLUSIONS: This study affirms the association between kidney transplant and improvement in HRQoL in the first year following transplant. Future research should further explore outcomes over the longer-term and factors contributing to HRQoL among this population.