To claim one AMA PRA Category 1 Credit™ for the CME activity associated with this article, you mu... more To claim one AMA PRA Category 1 Credit™ for the CME activity associated with this article, you must do the following: (1) read this article in its entirety, (2) answer at least 80 percent of the quiz questions correctly, and (3) complete an evaluation. The quiz, evaluation, and form for claiming AMA PRA Category 1 Credit™ are available through the AMA Ed Hub TM .
Pediatric heart transplantation as a field has evolved over the last 50 years and is now a widely... more Pediatric heart transplantation as a field has evolved over the last 50 years and is now a widely accepted therapy for children with end-stage heart failure. The major ethical principles that guide equitable allocation of organs include utility, justice, and respect for autonomy. In this chapter, we discuss historical perspectives, current state of the field, and explore how ethical principles guide recipient selection and donor allocation. Additionally, other ethical themes that are discussed include: surgical innovation and informed consent; psychosocial issues in transplantation; quality of life and end of life care; genetic anomalies and developmental delay; and regulatory aspects of organ donation. Finally, we discuss recently published cases related to pediatric heart transplantation that highlight ethical conflicts, offer an ethical analysis, and suggest potential solutions.
BACKGROUND Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or ... more BACKGROUND Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs...
Clinical ethics consultation is an emerging field whereby an individual or group of individuals w... more Clinical ethics consultation is an emerging field whereby an individual or group of individuals with expertise in ethics provides a set of services to clinicians and families to provide guidance about ethical issues that arise during medical treatment. Ethicists may help to resolve disputes when parties disagree about treatment decisions, offer historical context regarding issues that medical providers and families may think are novel, and provide insights into the current state of the issue in the bioethics literature. Multiple methodologies and approaches exist by which an ethics consultant can scrutinize, analyze, and provide recommendations of an ethically acceptable option. In this chapter, we will focus on the role of the ethics consultant, explore various approaches to performing a formal ethics consultation, review cases from the literature, and describe two clinical ethical consultations that involve pediatric patients with congenital heart disease. Finally, we provide an u...
Background and Objectives: Little data exist on provider perspectives about counselling and share... more Background and Objectives: Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making. Methods: We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach. Results: Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliativ...
This article considers complexities of shared decision making in pediatric heart transplantation ... more This article considers complexities of shared decision making in pediatric heart transplantation and suggests that decisions about pediatric heart transplantation should be shared between a clinical team and parents. This article also considers goals of shared decision making involving Public Health Service increased-risk donors and recommends policy changes to strengthen decision sharing. Need for Pediatric Donor Hearts Heart transplantation (HTx) is the standard of care for children with end-stage heart failure, with approximately 500 pediatric heart transplants performed annually in the United States. 1 A significant shortage of available organs exists, however, leading to long wait list times and significant morbidity. According to the Organ Procurement and Transplantation Network (OPTN), the average waiting time on the list for a pediatric patient from 2007 to 2014 was 115 days, with children ages 1 to 5 years waiting an average of 139 days (OPTN database). Indeed, of the 4392 children listed for HTx during this time frame, 457 (10.4%) died prior to HTx and still others were removed from the waiting list because they became "too sick to transplant."
The congenital heart care community faces a myriad of public health issues that act as barriers t... more The congenital heart care community faces a myriad of public health issues that act as barriers toward optimum patient outcomes. In this article, we attempt to define advocacy and policy initiatives meant to spotlight and potentially address these challenges. Issues are organized into the following 3 key facets of our community: patient population, health care delivery, and workforce. We discuss the social determinants of health and health care disparities that affect patients in the community that require the attention of policy makers. Furthermore, we highlight the many needs of the growing adults with congenital heart disease and those with comorbidities, highlighting concerns regarding the inequities in access to cardiac care and the need for multidisciplinary care. We also recognize the problems of transparency in outcomes reporting and the promising application of telehealth. Finally, we highlight the training of providers, measures of productivity, diversity in the workforce,...
To claim one AMA PRA Category 1 Credit™ for the CME activity associated with this article, you mu... more To claim one AMA PRA Category 1 Credit™ for the CME activity associated with this article, you must do the following: (1) read this article in its entirety, (2) answer at least 80 percent of the quiz questions correctly, and (3) complete an evaluation. The quiz, evaluation, and form for claiming AMA PRA Category 1 Credit™ are available through the AMA Ed Hub TM .
Pediatric heart transplantation as a field has evolved over the last 50 years and is now a widely... more Pediatric heart transplantation as a field has evolved over the last 50 years and is now a widely accepted therapy for children with end-stage heart failure. The major ethical principles that guide equitable allocation of organs include utility, justice, and respect for autonomy. In this chapter, we discuss historical perspectives, current state of the field, and explore how ethical principles guide recipient selection and donor allocation. Additionally, other ethical themes that are discussed include: surgical innovation and informed consent; psychosocial issues in transplantation; quality of life and end of life care; genetic anomalies and developmental delay; and regulatory aspects of organ donation. Finally, we discuss recently published cases related to pediatric heart transplantation that highlight ethical conflicts, offer an ethical analysis, and suggest potential solutions.
BACKGROUND Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or ... more BACKGROUND Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs...
Clinical ethics consultation is an emerging field whereby an individual or group of individuals w... more Clinical ethics consultation is an emerging field whereby an individual or group of individuals with expertise in ethics provides a set of services to clinicians and families to provide guidance about ethical issues that arise during medical treatment. Ethicists may help to resolve disputes when parties disagree about treatment decisions, offer historical context regarding issues that medical providers and families may think are novel, and provide insights into the current state of the issue in the bioethics literature. Multiple methodologies and approaches exist by which an ethics consultant can scrutinize, analyze, and provide recommendations of an ethically acceptable option. In this chapter, we will focus on the role of the ethics consultant, explore various approaches to performing a formal ethics consultation, review cases from the literature, and describe two clinical ethical consultations that involve pediatric patients with congenital heart disease. Finally, we provide an u...
Background and Objectives: Little data exist on provider perspectives about counselling and share... more Background and Objectives: Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers’ perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making. Methods: We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach. Results: Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliativ...
This article considers complexities of shared decision making in pediatric heart transplantation ... more This article considers complexities of shared decision making in pediatric heart transplantation and suggests that decisions about pediatric heart transplantation should be shared between a clinical team and parents. This article also considers goals of shared decision making involving Public Health Service increased-risk donors and recommends policy changes to strengthen decision sharing. Need for Pediatric Donor Hearts Heart transplantation (HTx) is the standard of care for children with end-stage heart failure, with approximately 500 pediatric heart transplants performed annually in the United States. 1 A significant shortage of available organs exists, however, leading to long wait list times and significant morbidity. According to the Organ Procurement and Transplantation Network (OPTN), the average waiting time on the list for a pediatric patient from 2007 to 2014 was 115 days, with children ages 1 to 5 years waiting an average of 139 days (OPTN database). Indeed, of the 4392 children listed for HTx during this time frame, 457 (10.4%) died prior to HTx and still others were removed from the waiting list because they became "too sick to transplant."
The congenital heart care community faces a myriad of public health issues that act as barriers t... more The congenital heart care community faces a myriad of public health issues that act as barriers toward optimum patient outcomes. In this article, we attempt to define advocacy and policy initiatives meant to spotlight and potentially address these challenges. Issues are organized into the following 3 key facets of our community: patient population, health care delivery, and workforce. We discuss the social determinants of health and health care disparities that affect patients in the community that require the attention of policy makers. Furthermore, we highlight the many needs of the growing adults with congenital heart disease and those with comorbidities, highlighting concerns regarding the inequities in access to cardiac care and the need for multidisciplinary care. We also recognize the problems of transparency in outcomes reporting and the promising application of telehealth. Finally, we highlight the training of providers, measures of productivity, diversity in the workforce,...
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