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

House, Taylor R.; Wightman, Aaron

doi:10.34067/kid.0000282021

Cited by 14 publications

(7 citation statements)

References 85 publications

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“…Additionally, pediatric nephrologists need better awareness of palliative care to address kidney failure symptoms of those who are on dialysis and those on conservative care ( 109 ). The goal of palliative care is not focused on “end-of-life” but to add “more life to a patient's years” ( 10 , 118 ).…”

Section: Suggested Action-points For Resolving Ethical Challenges In ...mentioning

confidence: 99%

“…In contrast, children lack autonomy to make medical decisions, are inherently vulnerable, and are dependent on their caregivers for decision-making and for treatment. Frameworks for palliative care are evolving but less well-developed ( 10 ). Although parents are considered responsible for their child, society shares responsibility for a child's well-being.…”

Section: Introductionmentioning

confidence: 99%

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Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Pais

Wightman

2022

Front. Pediatr.

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Children with kidney failure require kidney replacement therapy (KRT), namely maintenance dialysis and kidney transplant. Adequate kidney failure care consists of KRT or conservative treatment with palliative care. In the context of kidney failure, children depend on parents who are their surrogate decision-makers, and the pediatric nephrology team for taking decisions about KRT or conservative care. In this paper, we discuss the ethical challenges that arise relating to such decision-making, from a global perspective, using the framework of pediatric bioethics. While many ethical dilemmas in the care of children with KRT are universal, the most significant ethical dilemma is the inequitable access to KRT in low & middle income countries (LMICs) where rates of morbidity and mortality depend on the family's ability to pay. Children with kidney failure in LMICs have inadequate access to maintenance dialysis, timely kidney transplant and palliative care compared to their counterparts in high income countries. Using case vignettes, we highlight how these disparities place severe burdens on caregivers, resulting in difficult decision-making, and lead to moral distress among pediatric nephrologists. We conclude with key action points to change this status-quo, the most important being advocacy by the global pediatric nephrology community for better access to affordable kidney failure care for children.

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Section: Suggested Action-points For Resolving Ethical Challenges In ...mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Pais

Wightman

2022

Front. Pediatr.

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“…Incorporating this care as a routine component of nephrology helps alleviate the stigma of PC. 24 Importantly, respondents' enthusiasm for the benefits of PC in the care of children with CKD mirrors evolutions in pediatric nephrology and PC. Within nephrology, scientific advances have allowed for a shift in care focus to highlight the importance of living well in addition to living longer.…”

Section: Discussionmentioning

confidence: 99%

“…[17][18][19][20][21][22][23] Integration of primary palliative care (PC) within nephrology care offers an opportunity to alleviate these burdens of children with CKD and their families. 24 Primary PC, holistic care delivery focused on optimizing quality of life, is critical for any clinician serving patients with serious illness. 25 The benefit of primary PC has been well-established in comparable pediatric chronic disease states including cancer, cystic fibrosis, and congenital heart disease.…”

Section: Introductionmentioning

confidence: 99%

Palliative Care Training in Pediatric Nephrology Fellowship: A Cross-Sectional Survey

House,

Wightman,

Smith

et al. 2023

Kidney360

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Background: Children with chronic kidney disease (CKD) and their families encounter significant burdens. Integrating primary palliative care (PC), holistic care provided by nephrologists focused on enhancing quality of life through symptom management, stress relief, and high-quality serious illness communication, provides an opportunity to promote flourishing. Incorporation of primary PC education in training is therefore recommended. Yet adult nephrology fellows report inadequate preparation to deliver primary PC. Similar experience of pediatric nephrology fellows is unknown. We sought to describe pediatric nephrology fellows’ experience in providing primary PC and PC exposure during training. Methods: We administered a cross-sectional web-based survey to pediatric nephrology fellows associated with the American Society of Pediatric Nephrology listserv in May 2021. The survey was adapted from a previously validated instrument and pretested by stakeholder nephrologists and subspecialty PC physicians; queries included institutional and personal PC experience, training, and confidence in primary PC delivery. Data were summarized descriptively. Results: Response rate was 32% (32/101). Respondents were 81% female and 50% white; 87% practiced in an urban setting. Only 1 fellow (3%) completed a PC rotation during fellowship, and 15 respondents (48%) completed a rotation in medical school or residency. Fellows reported substantially more practice conducting kidney biopsies than family meetings; 68% of fellows had performed >10 kidney biopsies, and 3% of fellows had led >10 family meetings. Confidence in navigating challenging communication, addressing psychological distress, or managing physical symptoms associated with CKD was generally low. Fellows with greater exposure to family meetings reported more confidence navigating challenging communication. Fellows endorsed a need for additional training; 97% indicated that training should happen during fellowship. Conclusions: Few pediatric nephrology fellows receive PC education or exposure during training, resulting in low rates of knowledge and confidence in primary PC delivery. Fellows indicate a need and desire for improved PC training.

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“…Integrating a PPC approach affords an opportunity to mitigate suffering and support flourishing as envisioned by children with advanced kidney disease and their families [21 ▪ ]. To date within paediatric nephrology, PPC resources have been underutilized and the subsequent positive impacts of PPC therefore underrealized, making contributions to this work timely and influential [22–25].…”

Section: Introductionmentioning

confidence: 99%

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

House

Wightman

2022

Current Opinion in Nephrology &Amp; Hypertension

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Purpose of reviewPaediatric 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 findingsChildren 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.SummaryChildren with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.

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

Cited by 14 publications

References 85 publications

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance

Palliative Care Training in Pediatric Nephrology Fellowship: A Cross-Sectional Survey

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

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