Bioética
Agosto 2019
1. - The Best Interest Standard: Same Name but Different Roles in Pediatric Bioethics and Child Rights Frameworks.
Ross LF, Swota AH.Perspect Biol Med. 2017;60(2):186-197. doi: 10.1353/pbm.2017.0027.
This article explores the intersection of pediatric bioethics and child rights by examining the best interest standard as it operates within the pediatric bioethics framework in the United States and the child rights framework based on the UN 1989 Convention on the Rights of the Child (CRC). . While the "best interest of the child" standard is central to both pediatric bioethics and the child rights community, it operates only as a guidance principle, and not as an intervention principle, in decision-making within U.S. pediatric bioethics, whereas it operates as both a guidance and intervention principle in the child rights community. The differences in how the best interest standard is operationalized lead to different roles for the family, the state, and the minor in decision-making processes and outcomes. We examine the recent case of Charlie Gard to illustrate some of these differences.
2.- Toward a coherent account of pediatric decision making.
Iltis AS1. J Med Philos. 2010 Oct;35(5):526-52. doi: 10.1093/jmp/jhq039. Epub 2010 Sep 5.
Abstract
Within and among societies, there are competing understandings of the status of children, including debates over whether they can bear rights and, if so, which rights they bear and against whom, and their capacity to make decisions and be held responsible and accountable for actions. There also are different understandings of what constitutes a family; what authority parents have over and regarding their children; and what should happen to children who are without parents because of death, desertion, or imprisonment. These and other related debates reflect deep differences in worldviews, in how one understands the legitimate role of the state, in how one comes to know the proper way to raise children, and so on. The United Nations Convention on the Rights of the Child purports to reflect international convergence on the rights of children, on how decisions concerning children should be made, and on how children ought to be treated by the state and by their parents. This paper examines whether the Convention's framework for decision making concerning children is an appropriate framework for pediatric bioethics. Questions about how to make health care decisions for children ultimately are questions of who is in authority to make and judge such decisions. Establishing who is in authority, determining whether there are any limits to that authority and, if so, defining those limits should be the focus of efforts to develop and implement a pediatric decision-making framework.
3.- Toward a Child Rights Theory in Pediatric Bioethics.
Goldhagen J, Mercer R, Webb E, Nathawad R, Shenoda S, Lansdown G. Perspect Biol Med. 2016;58(3):306-19. doi: 10.1353/pbm.2016.0014.
Abstract
This article offers a child rights theory in pediatric bioethics, applying the principles, standards, and norms of child rights, health equity, and social justice to medical and ethical decision-making. We argue that a child rights theory in pediatric bioethics will help pediatricians and pediatric bioethicists analyze and address the complex interplay of biomedical and social determinants of child health. These core principles, standards and norms, grounded in the U.N. Convention on the Rights of the Child (CRC), provide the foundational elements for the theory and a means for better understanding the complex determinants of children's health and well-being. Rights-based approaches to medical and ethical decision-making provide strategies for applying and translating these elements into the practice of pediatrics and pediatric bioethics by establishing a coherent, consistent, and contextual theory that is relevant to contemporary practice. The proposed child rights theory extends evolving perspectives on the relationship between human rights and bioethics to both child rights and pediatric bioethics.
4.- The Ethics of Vaccination Nudges in Pediatric Practice.
Navin MC1. HEC Forum. 2017 Mar;29(1):43-57. doi: 10.1007/s10730-016-9311-2.
Abstract
Techniques from behavioral economics-nudges-may help physicians increase pediatric vaccine compliance, but critics have objected that nudges can undermine autonomy. Since autonomy is a centrally important value in healthcare decision-making contexts, it counts against pediatric vaccination nudges if they undermine parental autonomy. Advocates for healthcare nudges have resisted the charge that nudges undermine autonomy, and the recent bioethics literature illustrates the current intractability of this debate. This article rejects a principle to which parties on both sides of this debate sometimes seem committed: that nudges are morally permissible only if they are consistent with autonomy. Instead, I argue that, at least in the case of pediatric vaccination, some autonomy-undermining nudges may be morally justified. This is because parental autonomy in pediatric decision-making is not as morally valuable as the autonomy of adult patients, and because the interests of both the vaccinated child and other members of the community can sometimes be weighty enough to justify autonomy-infringing pediatric vaccination nudges. This article concludes with a set of worries about the effect of pediatric vaccination nudges on parent-physician relationships, and it calls on the American Academy of Pediatrics to draw on scientific and bioethics research to develop guidelines for the use of nudges in pediatric practice and, in particular, for the use of pediatric vaccination nudges.
5. - How issues of autonomy and consent differ between children and adults: Kids are not just little people.
Reynolds S1, Grant-Kels JM2, Bercovitch L3. Clin Dermatol. 2017 Nov - Dec;35(6):601-605. doi: 10.1016/j.clindermatol.2017.08.010. Epub 2017 Aug 3.
Abstract
Decision making in dermatology practice with adult patients is in most cases a relatively straightforward process, involving a back-and-forth exchange of information, ideas and opinions between the physician and patient. This process is more complex in the field of pediatric dermatology. It involves the triad of the patient, parent or guardian, and physician. It utilizes a model, common to many fields in pediatrics, whereby the physician seeks to obtain informed permission from the parent with the assent of the child, all the while endeavoring to act in the best interests of the child. This model can be challenged in many ways; from parents seeking interventions, which are not in the best interests of the child, to a child refusing to assent to a procedure that is deemed necessary by the parent and physician. We review the theory, terminology, and guidelines relevant to the ethics of decision making when working with children compared with adults. We explore approaches to a variety of ethically challenging situations that may be encountered by the dermatologist, through their work with pediatric patients
6.- Parents' attitudes towards and perceptions of involving minors in medical research from the Japanese perspective.
Fukuda Y1, Fukuda K2. BMC Med Ethics. 2018 Nov 21;19(1):91. doi: 10.1186/s12910-018-0330-1.
BACKGROUND:
Children's intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child's consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children's participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children's participation in research.
METHODS:
A semi-structured Internet survey on parents' opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6-10-year-olds, 11-14-year-olds, and 15-18-year-olds), with three illness severity categories. Possible correlations between the number of children, children's ages, parents' educational levels, and parents' attitudes were examined.
RESULTS:
Among the participants, 42.3% recognized the term "informed consent." The proportion of participants who understood "informed consent" increased with educational level. Four out of five participants did not know, or had not heard of, the term "informed assent." Furthermore, the percentage of those who understood the term "informed assent" increased with academic level. Participants generally believed in prioritizing parents' opinions over children's, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition's severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents' values and judgments regarding medical intervention involving their children varied.
CONCLUSIONS:
Children's ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.
7.- Informed consent instead of assent is appropriate in children from the age of twelve: Policy implications of new findings on children's competence to consent to clinical research.
Hein IM1, De Vries MC2, Troost PW3, Meynen G4,5, Van Goudoever JB6,7, Lindauer RJ8. BMC Med Ethics. 2015 Nov 9;16(1):76. doi: 10.1186/s12910-015-0067-z.
BACKGROUND:
For many decades, the debate on children's competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children's competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children's competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.
DISCUSSION:
Although assessment of children's competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad. Previous research outcomes showed that children's medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children's competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated.
8.- Adolescents' cognitive capacity reaches adult levels prior to their psychosocial maturity: Evidence for a "maturity gap" in a multinational, cross-sectional sample.
Icenogle G1 y cols. Law Hum Behav. 2019 Feb;43(1):69-85. doi: 10.1037/lhb0000315.
Abstract
All countries distinguish between minors and adults for various legal purposes. Recent U.S. Supreme Court cases concerning the legal status of juveniles have consulted psychological science to decide where to draw these boundaries. However, little is known about the robustness of the relevant research, because it has been conducted largely in the U.S. and other Western countries. To the extent that lawmakers look to research to guide their decisions, it is important to know how generalizable the scientific conclusions are. The present study examines 2 psychological phenomena relevant to legal questions about adolescent maturity: cognitive capacity, which undergirds logical thinking, and psychosocial maturity, which comprises individuals' ability to restrain themselves in the face of emotional, exciting, or risky stimuli. Age patterns of these constructs were assessed in 5,227 individuals (50.7% female), ages 10-30 (M = 17.05, SD = 5.91) from 11 countries. Importantly, whereas cognitive capacity reached adult levels around age 16, psychosocial maturity reached adult levels beyond age 18, creating a "maturity gap" between cognitive and psychosocial development. Juveniles may be capable of deliberative decision making by age 16, but even young adults may demonstrate "immature" decision making in arousing situations. We argue it is therefore reasonable to have different age boundaries for different legal purposes: 1 for matters in which cognitive capacity predominates, and a later 1 for matters in which psychosocial maturity plays a substantial role. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
9.- Medical decision-making in children and adolescents: developmental and neuroscientific aspects.
Grootens-Wiegers P1,2, Hein IM3, van den Broek JM4,5, de Vries MC6,7. BMC Pediatr. 2017 May 8;17(1):120. doi: 10.1186/s12887-017-0869-x.
BACKGROUND:
Various international laws and guidelines stress the importance of respecting the developing autonomy of children and involving minors in decision-making regarding treatment and research participation. However, no universal agreement exists as to at what age minors should be deemed decision-making competent. Minors of the same age may show different levels of maturity. In addition, patients deemed rational conversation-partners as a child can suddenly become noncompliant as an adolescent. Age, context and development all play a role in decision-making competence. In this article we adopt a perspective on competence that specifically focuses on the impact of brain development on the child's decision-making process.
MAIN BODY:
We believe that the discussion on decision-making competence of minors can greatly benefit from a multidisciplinary approach. We adopted such an approach in order to contribute to the understanding on how to deal with children in decision-making situations. Evidence emerging from neuroscience research concerning the developing brain structures in minors is combined with insights from various other fields, such as psychology, decision-making science and ethics. Four capacities have been described that are required for (medical) decision-making: (1) communicating a choice; (2) understanding; (3) reasoning; and (4) appreciation. Each capacity is related to a number of specific skills and abilities that need to be sufficiently developed to support the capacity. Based on this approach it can be concluded that at the age of 12 children can have the capacity to be decision-making competent. However, this age coincides with the onset of adolescence. Early development of the brain's reward system combined with late development of the control system diminishes decision-making competence in adolescents in specific contexts. We conclude that even adolescents possessing capacities required for decision-making, may need support of facilitating environmental factors.
CONCLUSION:
This paper intends to offer insight in neuroscientific mechanisms underlying the medical decision-making capacities in minors and to stimulate practices for optimal involvement of minors. Developing minors become increasingly capable of decision-making, but the neurobiological development in adolescence affects competence in specific contexts. Adequate support should be offered in order to create a context in which minors can make competently make decisions.
10. - Assent and consent in pediatric and adolescent research: school children's perspectives.
Al-Sheyab NA y cols. Adolesc Health Med Ther. 2019 Feb 11;10:7-14. doi: 10.2147/AHMT.S185553. eCollection 2019.
BACKGROUND:
School students' views and perceptions of informed parental consent and child assent about child participation in research in the Middle East are not known.
METHODS: Focus group interviews were conducted to understand high school students' perspectives toward child and adolescent assents and consents in research including the importance of, and depth of information needed in consent and assent, and perception toward written vs verbal consent and assent.
RESULTS:
The majority of students agreed that it is necessary to take parental approval and that they would not participate in research if their parents refused. Furthermore, the majority of male students agreed that if the research requires only questionnaires to be completed, then child's approval is sufficient whereas measures, such as blood sugar screening required approval from both the parent and child. Females believed it is enough to provide parental consent to participate in research unless information provided is adequate, then child approval is enough. All students stressed the importance of including detailed information; however, parental consent needs to have more detailed information than child assent.
CONCLUSION:
Parts of the students' perceptions were congruent, whereas other views were not congruent with proper conduct of pediatric research. Such a situation warrants further research and actions.
11.- How should assent to research be sought in low income settings? Perspectives from parents and children in Southern Malawi.
Mangochi H1, Gooding K2,3, Bennett A2, Parker M4, Desmond N2,3, BMC Med Ethics. 2019 May 14;20(1):32. doi: 10.1186/s12910-019-0369-7.
BACKGROUND:
Paediatric research in low-income countries is essential to tackle high childhood mortality. As with all research, consent is an essential part of ethical practice for paediatric studies. Ethics guidelines recommend that parents or another proxy provide legal consent for children to participate, but that children should be involved in the decision through providing assent. However, there remain uncertainties about how to judge when children are ready to give assent and about appropriate assent processes. Malawi does not yet have detailed guidelines on assent. Understanding perspectives among children and their parents can assist in developing contextually-appropriate assent guidance.
METHODS:
Qualitative research was conducted with children and parents in three settings in Southern Malawi (low- and high-income urban and rural), to take account of any variations between socioeconomic and cultural contexts. In each setting, interviews were conducted with parents and their children who had participated in paediatric research to understand their experiences of assent and views on appropriate assent practice. Focus groups were also conducted with children and parents, to understand broader social perspectives.
RESULTS:
We found widespread support for involving children in decisions on research participation. Participants identified a range of factors that affect children's capacity to give assent, including intellectual capacity, emotional development, life experience and cultural norms. Age was often mentioned as a consideration, but deemed an unreliable sole indicator of capacity to assent. In relation to appropriate assent processes, participants emphasised considerations such as supporting effective understanding and minimizing harms. Views on how to achieve these aims varied; for example, there were different ideas about the appropriate order in which to approach children and parents, and about whose decision to respect in the event of disagreement.
CONCLUSIONS:
Parents and children agreed about the value of involving children in decisions on research, and about the need to promote children's decision-making capacity while respecting parents' interests in children's welfare. Developing practical guidance that meets these principles is challenging, particularly given the need for flexible approaches that suit different study types, children's capacities and family environments. Further discussion within the Malawi research and ethics community will help develop contextually-appropriate guidelines.
12.- When Adolescent and Parents Disagree on Medical Plan, Who Gets to Decide?
Hopkins KA y cols . Pediatrics. 2019 Jul 2. pii: e20190291. doi: 10.1542/peds.2019-0291. [Epub ahead of print] PMID: 31266823 DOI: 10.1542/peds.2019-0291
13.- ELS (Ethical Life Support): a new teaching tool for medical ethics.
Vergano M1,2, Naretto G3,4, Elia F5, Gandolfo E6, Calliera CN7, Gristina GR8.Crit Care. 2019 Jun 6;23(1):204. doi: 10.1186/s13054-019-2474-x.PMID: 31171017 PMCID: PMC6554903 DOI: 10.1186/s13054-019-2474-x . Free PMC Article
14.- Medical ethics educational improvement, is it needed or not?! Survey for the assessment of the needed form, methods and topics of medical ethics teaching course amongst the final years medical students Faculty of Medicine Ain Shams University (ASU), Cairo, Egypt 2010.
Fawzi MM1. J Forensic Leg Med. 2011 Jul;18(5):204-7. doi: 10.1016/j.jflm.2011.02.012. Epub 2011 Mar 21.
INTRODUCTION:
In the process of our faculty gaining accreditation, the debate concerning the necessity for initiating an integrated course in which medical ethics course is implemented have arouse. Arguments concerning what should this course include, the best timing for this course to be applied, how it should be taught, planned for and mostly for what the students are interested to get out of it. GOAL: The main purpose of this work is to identify the ethical needs and ethical dilemmas freshly graduated medical students face at the beginning of their training and their suggestions to seek better educational approaches that can be applied in teaching medical ethics proposed by the medical students themselves throughout the teaching process and after graduation.
METHODS: It seemed rather appropriate at this stage to carry out an evaluation survey assessing the needs for medical ethics teaching course through the exploration of the opinions of medical students and freshly graduated doctors on ethical issues through a simple survey by using an open ended question questionnaire designed to fulfil the study targeted requirements.
RESULTS: 100 volunteers (n = 100) randomly chosen from the fifth year students of our faculty of medicine ASU who had recently studied ethics course in the fourth year (n = 20), interns both junior and senior residents in El Demerdash hospitals (n = 80). 25 questionnaires were excluded due to inappropriate or missing answers resulting in 75% response rate. 60% of the surveyed group favored an integrated ethics course taught throughout the whole academic years study. 56% chose the practical teaching method with problem solving strategies for the daily arising confusing ethical issues to be the best way to teach the course. While 53.4% thought that stuff specialized in medico legal issues were best to teach this course. As regards the highly confusing ethical dilemmas in which they were interested in getting updated feedback about: Confidentiality, doctor-patient relationship and informed consent came first by 69.3%.
CONCLUSIONS:
This study revealed the essential need for a model medical ethics curriculum that responds to students' concerns in addition to providing basic training in moral reasoning and ethical decision making to be applied both horizontally and vertically across the whole years of medical school.
15. - Ethical, legal and professional accountability in emergency nursing practice: An ethnographic observational study.
Rubio-Navarro A1, Garcia-Capilla DJ2, Torralba-Madrid MJ3, Rutty J4.Int Emerg Nurs. 2019 Jul 19:100777. doi: 10.1016/j.ienj.2019.05.003. [Epub ahead of print]
INTRODUCTION:
Accountability in nursing practice is a concept that influences quality care, decision-making, safety standards and staff values. Therefore, understanding accountability and how it affects nursing practice could improve patient care and nurses' working conditions. AIM: The aim of this study was to find factors that influenced ethical, legal and professional accountability in emergency nursing practice. METHODS: A qualitative ethnographic approach using participant observation through convenience sampling was employed as the data collection method, while ethnographic content analysis was used for data analysis. RESULTS: The factors linked to nursing accountability found were classified into four main themes: daily dynamics, work environment evolution, customs and routines and bioethics principles' application.
DISCUSSION:
The long-term effect of chronic high workload and crowding, which affects nursing accountability, could promote burnout in a junior ED workforce. Changes in the nurses' working conditions need to be implemented to limit the workload to which an ED nurse is subjected to.
CONCLUSION:
ED nurses have to manage their accountability in difficult situations regularly, which followed patterns of four main themes across the majority of situations. Nonetheless, all those factors were influenced by nursing workload, an ever-present factor that was always considered by ED nurses during decision-making.
16. Medical Error Prevention. Authors Rodziewicz TL1, Hipskind JE2.
SourceStatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2019-. 2019 May 5.
17.- Nurses' contributions to the resolution of ethical dilemmas in practice.
Barlow NA1, Hargreaves J1, Gillibrand WP1. Nurs Ethics. 2018 Mar;25(2):230-242. doi: 10.1177/0969733017703700. Epub 2017 May 3.
BACKGROUND:
Complex and expensive treatment options have increased the frequency and emphasis of ethical decision-making in healthcare. In order to meet these challenges effectively, we need to identify how nurses contribute the resolution of these dilemmas.
AIMS:
To identify the values, beliefs and contextual influences that inform decision-making. To identify the contribution made by nurses in achieving the resolution of ethical dilemmas in practice.
DESIGN:
An interpretive exploratory study was undertaken, 11 registered acute care nurses working in a district general hospital in England were interviewed, using semi-structured interviews. In-depth content analysis of the data was undertaken via NVivo coding and thematic identification. Participants and context: Participants were interviewed about their contribution to the resolution of ethical dilemmas within the context of working in an acute hospital ward. Participants were recruited from all settings working with patients of any age and any diagnosis. Ethical considerations: Ethical approval was obtained from the local National Research Ethics Committee.
FINDINGS:
Four major themes emerged: 'best for the patient', 'accountability', 'collaboration and conflict' and 'concern for others'. Moral distress was also evident in the literature and findings, with moral dissonance recognised and articulated by more experienced nurses. The relatively small, single-site sample may not account for the effects of organisational culture on the results; the findings suggested that professional relationships were key to resolving ethical dilemmas.
DISCUSSION:
Nurses use their moral reasoning based on their beliefs and values when faced with ethical dilemmas. Subsequent actions are mediated though ethical decision-making frames of reference including deontology, consequentialism, the ethics of care and virtue ethics. Nurses use these in contributing to the resolution of these dilemmas. Nurses require the skills to develop and maintain professional relationships for addressing ethical dilemmas and to engage with political and organisational macro- and micro-decision-making.
CONCLUSION:
Nurses' professional relationships are central to nurses' contributions to the resolution of ethical dilemmas.
19.- Ethical dilemmas in nursing: An integrative review.
Rainer J1, Schneider JK1, Lorenz RA2. J Clin Nurs. 2018 Oct;27(19-20):3446-3461. doi: 10.1111/jocn.14542. Epub 2018 Jul 23.
Abstract: AIMS: To identify themes and gaps in the literature to stimulate researchers to develop strategies to guide decision-making among clinical nurses faced with ethical dilemmas. BACKGROUND: The concept of ethical dilemmas has been well explored in nursing because of the frequency of ethical dilemmas in practice and the toll these dilemmas can take on nurses. Although ethical dilemmas are prevalent in nursing practice, frequently leading to moral distress, there is little guidance in the literature to help nurses resolve them. DESIGN: This study is an integrative review of published research from 2000 to 2017.METHODS: The keywords ethics, ethical dilemmas and nurs* were searched in CINAHL, PubMed, OVID and SCOPUS. Exclusion criteria were sources not available in English, not in acute care, and without an available abstract. Seventy-two studies were screened; 35 were retained. Garrard's matrix was utilised to analyse and synthesise the studies.
RESULTS: Ethical dilemmas arose from end-of-life issues, conflict with physicians or families, patient privacy concerns and organisational constraints. Differences were found in study location, and yet international research confirms that ethical dilemmas are universally prevalent and must be addressed globally to protect patients and nurses.
CONCLUSIONS:
This review offers an analysis of the available evidence regarding ethical dilemmas in acute care, identifying themes, limitations and gaps in the literature. The gaps in quantitative intervention work, US paucity of research, and lack of comparisons across practice settings/nursing roles must be addressed. Further exploration is warranted in the relationship between ethical dilemmas and moral distress, the significance patient physical appearance plays on nurse determination of futility, and strategies for pain management and honesty.
RELEVANCE TO NURSING PRACTICE:
Understanding and addressing gaps in research is essential to develop strategies to help nurses resolve ethical dilemmas and to avoid moral distress and burnout.
19.- Achieving consensus advice for paediatricians and other health professionals: on prevention, recognition and management of conflict in paediatric practice.
Linney M1,2, Hain RDW3, Wilkinson D4,5, Fortune PM6, Barclay S7, Larcher V8, Fitzgerald J2, Arkell E2. Arch Dis Child. 2019 May;104(5):413-416. doi: 10.1136/archdischild-2018-316485.
20.- Clinical sympathy: the important role of affectivity in clinical practice.
Hardy C1. Med Health Care Philos. 2019 Mar 27. doi: 10.1007/s11019-018-9872-8. [Epub ahead of print]
Abstract
Bioethics has begun to see the revaluation of affects in medical practice, but not all of them, and not necessarily in the sense of affects as we know them. Empathy has been accepted as important for good medical practice, but only in a way that strips it of its affectivity and thus prevents other affects, like sympathy, from being accepted. As part of a larger project that aims at revaluing the importance of affectivity in medical practice, the purpose of this paper is to develop a clinical sympathy that can serve as a trainable skill for medical professionals. While everyday sympathy may be problematic as a professional skill for physicians, this does not imply that sympathy should be entirely rejected. As a natural part of our moral psychology, sympathy is an intersubjective affect that aids in our interactions with others and our decision-making abilities. I present here a theory of clinical sympathy as an affective response to patients, in which physicians are both attuned to their affective response and understand how their affects are influencing their beliefs and judgments. In this way, clinical sympathy serves as a trainable skill that can aid physicians in their interactions with their patients.
21.- Clinical Medical Ethics: Its History and Contributions to American Medicine.
Siegler M1. J Clin Ethics. Spring 2019;30(1):17-26.
Abstract
In 1972, I created the new field of clinical medical ethics (CME) in the Department of Medicine at the University of Chicago. In my view, CME is an intrinsic part of medicine and is not a branch of bioethics or philosophical ethics or legal ethics. The relationship of patients with medically trained and licensed clinicians is at the very heart of CME. CME must be practiced and applied not by nonclinical bioethicists, but rather by licensed clinicians in their routine, daily encounters with inpatients and outpatients. CME addresses many clinical issues such as truth-telling, informed consent, confidentiality, surrogate decision making, and end-of-life care, while also encouraging personal, humane, and compassionate interactions between experienced clinicians and patients. The goals of CME are to improve patient care and outcomes by helping physicians and other health professionals identify and respond to clinical-ethical challenges that arise in the ordinary care of patients. As Edmund Pellegrino, Peter A. Singer, and I wrote in the first issue of The Journal of Clinical Ethics, 30 years ago: "The central goal of CME is to improve the quality of patient care by identifying, analyzing, and contributing to the resolution of ethical problems that arise in the routine practice of clinical medicine." Similar to cardiology and oncology consultations, ethics consultations are a small component of a much larger field, and the process of consultations is certainly not at the core of cardiology or oncology or CME. In this article, I intend to discuss the origins of the field of CME, its goals and methods, the relationship between the broad field of CME and the much narrower practice of ethics consultation, the contributions of the MacLean Center at the University of Chicago in developing the field of CME, and, finally, how CME has improved the practice of medicine in the United States.
22.- Gaps in the Implementation of Shared Decision-making: Illustrative Cases.
Weiss EM1,2, Clark JD3,2, Heike CL2, Rosenberg AR3,2, Shah SK4, Wilfond BS3,2, Opel DJ3,2. Pediatrics. 2019 Mar;143(3). pii: e20183055. doi: 10.1542/peds.2018-3055. Epub 2019 Feb 5.
Abstract
Shared decision-making (SDM) has emerged as the preferred decision-making model in the clinician-patient relationship. Through collaboration, SDM helps to facilitate evidence-based medical decisions that are closely aligned with patient or surrogate preferences, values, and goals. How to implement SDM in clinical pediatric practice, however, remains elusive, in part because SDM in pediatrics is complicated by the involvement of parents as a special class of surrogate decision-maker. A provisional framework for the process of SDM in pediatrics was recently proposed by Opel to help facilitate its implementation. To identify aspects of the framework that require refinement, we applied it across a diverse range of clinical cases from multiple pediatric specialties. In doing so, several questions surfaced that deserve further scrutiny: (1) For which medical decisions is consideration of SDM required? (2) What is considered medically reasonable when there is variability in standard practice? (3) Can an option that is not consistent with standard practice still be medically reasonable? (4) How should public health implications be factored into SDM? (5) How should variability in preference sensitivity be approached? (6) How should the developing autonomy of adolescents be integrated into SDM?; and (7) How should SDM address parental decisional burden for emotionally charged decisions? We conduct a brief analysis of each question raised to illustrate key areas for future research. P
23.- A 4-Step Framework for Shared Decision-making in Pediatrics.
Opel DJ1. Pediatrics. 2018 Nov;142(Suppl 3):S149-S156. doi: 10.1542/peds.2018-0516E.
Abstract
Shared decision-making (SDM) is a well-established component of patient-centered care, and yet, its application in pediatrics is poorly understood. Common features of pediatric decision-making are not completely addressed in current SDM models, such as the fact that the principal SDM participant is the patient's surrogate, who, unlike competent adult patients deciding for themselves, has limitations on decision-making authority. To address this gap and improve the practice of SDM in pediatrics, a practical 4-step framework is presented. In step 1, physicians are posed the following question for any discrete decision: does the decision include >1 medically reasonable option? If the answer is no, SDM is not indicated. If the answer is yes, physicians proceed to step 2 and answer the following question: does 1 option have a favorable medical benefit-burden ratio compared with other options? If yes, physician-guided SDM is appropriate. If no, parent-guided SDM is appropriate. For each SDM approach, the physician proceeds to step 3 and answers the following question: how preference sensitive are the options? This helps to determine the specific SDM approach in step 4, which ranges from a strong or weak version of physician-guided SDM to a strong or weak version of parent-guided SDM. Several decisional characteristics, if present, can also help calibrate the version of SDM used. Additional analyses are needed to consider the inclusion of adolescents into this SDM framework.
24.- Impact of moral case deliberation in healthcare settings: a literature review.
Haan MM1, van Gurp JLP2, Naber SM2, Groenewoud AS2. BMC Med Ethics. 2018 Nov 6;19(1):85. doi: 10.1186/s12910-018-0325-y.
BACKGROUND:
An important and supposedly impactful form of clinical ethics support is moral case deliberation (MCD). Empirical evidence, however, is limited with regard to its actual impact. With this literature review, we aim to investigate the empirical evidence of MCD, thereby a) informing the practice, and b) providing a focus for further research on and development of MCD in healthcare settings. METHODS: A systematic literature search was conducted in the electronic databases PubMed, CINAHL and Web of Science (June 2016). Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of our decisions. The qualitative analysis was supported by ATLAS.ti.
RESULTS: Based on a qualitative analysis of 25 empirical papers, we identified four clusters of themes: 1) facilitators and barriers in the preparation and context of MCD, i.e., a safe and open atmosphere created by a facilitator, a concrete case, commitment of participants, a focus on the moral dimension, and a supportive organization; 2) changes that are brought about on a personal and inter-professional level, with regard to professional's feelings of relief, relatedness and confidence; understanding of the perspectives of colleagues, one's own perspective and the moral issue at stake; and awareness of the moral dimension of one's work and awareness of the importance of reflection; 3) changes that are brought about in caring for patients and families; and 4) changes that are brought about on an organizational level.
CONCLUSIONS:
This review shows that MCD brings about changes in practice, mostly for the professional in inter-professional interactions. Most reported changes are considered positive, although challenges, frustrations and absence of change were also reported. Empirical evidence of a concrete impact on the quality of patient care is limited and is mostly based on self-reports. With patient-focused and methodologically sound qualitative research, the practice and the value of MCD in healthcare settings can be better understood, thus making a stronger case for this kind of ethics support.
25.- Clinical Ethics Support for Healthcare Personnel: An Integrative Literature Review.
Rasoal D1, Skovdahl K2, Gifford M3, Kihlgren A3. HEC Forum. 2017 Dec;29(4):313-346. doi: 10.1007/s10730-017-9325-4.
Abstract
This study describes which clinical ethics approaches are available to support healthcare personnel in clinical practice in terms of their construction, functions and goals. Healthcare personnel frequently face ethically difficult situations in the course of their work and these issues cover a wide range of areas from prenatal care to end-of-life care. Although various forms of clinical ethics support have been developed, to our knowledge there is a lack of review studies describing which ethics support approaches are available, how they are constructed and their goals in supporting healthcare personnel in clinical practice. This study engages in an integrative literature review. We searched for peer-reviewed academic articles written in English between 2000 and 2016 using specific Mesh terms and manual keywords in CINAHL, MEDLINE and Psych INFO databases. In total, 54 articles worldwide described clinical ethics support approaches that include clinical ethics consultation, clinical ethics committees, moral case deliberation, ethics rounds, ethics discussion groups, and ethics reflection groups. Clinical ethics consultation and clinical ethics committees have various roles and functions in different countries. They can provide healthcare personnel with advice and recommendations regarding the best course of action. Moral case deliberation, ethics rounds, ethics discussion groups and ethics reflection groups support the idea that group reflection increases insight into ethical issues. Clinical ethics support in the form of a "bottom-up" perspective might give healthcare personnel opportunities to think and reflect more than a "top-down" perspective. A "bottom-up" approach leaves the healthcare personnel with the moral responsibility for their choice of action in clinical practice, while a "top-down" approach risks removing such moral responsibility.
26.- Taking societal cost into clinical consideration: U.S. physicians' views.
Stavig AR1, Tak HJ2, Yoon JD3, Curlin FA1. AJOB Empir Bioeth. 2018 Jul-Sep;9(3):173-180. doi: 10.1080/23294515.2018.1498408. Epub 2018 Aug 30.
BACKGROUND: Recent campaigns (e.g., the American Board of Internal Medicine Foundation's Choosing Wisely) reflect the increasing role that physicians are expected to have in stewarding health care resources. We examine whether physicians believe they should pay attention to societal costs or refuse requests for costly interventions with little chance of patient benefit. METHODS: We conducted a secondary analysis of data from a 2010 national survey of 2016 U.S. physicians sampled from the AMA Physician Masterfile. Criterion measures were agreement or disagreement with two survey items related to costs of care. We also examined whether physicians' practice and religious characteristics were associated with their responses.
RESULTS: The adjusted response rate was 62% (1156/1878). Forty-seven percent of physicians agreed that physicians "should not consider the societal cost of medical care when caring for individual patients," whereas 69% agreed that physicians "should refuse requests from patients or their families for costly interventions that have little chance of benefitting the patient." Physicians in specialties that care for patients at the end of life were more supportive of refusing such costly interventions. We did not find consistent associations between physicians' religiosity and their responses to these items, though those least supportive of taking into account societal cost were disproportionately from Christian affiliations.
CONCLUSION:
Physicians were nearly evenly divided regarding whether they should help control societal costs when caring for individual patients, but a strong majority agreed that physicians should refuse costly interventions that have little chance of benefit.
27.- Mechanistic reasoning and informed consent.
Kennedy A1, Malanowski S1. Bioethics. 2019 Jan;33(1):162-168. doi: 10.1111/bioe.12500. Epub 2018 Aug 14.
Abstract
Evidence-based medicine (EBM) proponents have argued that mechanistic evidence concerning medical treatments should be considered secondary to evidence derived from randomized controlled trials (RCTs). One common criticism of RCTs is that they often do not yield results that are generalizable to clinical practice, and that for clinical practice application, mechanistic evidence is needed. However, proponents of EBM have argued that mechanistic reasoning is often unreliable and thus not very useful. Here we suggest an important role of mechanistic explanation that has been left out of this discussion entirely, namely, its importance in a patient's decision of whether or not to take certain drugs. We argue that in certain cases, knowing how a treatment works is just as important for the patient as knowing whether it does. In this paper, we explore how and why giving patients mechanistic information can be an important factor in obtaining informed consent for medical treatment, focusing on the example case of hormonal contraceptives.
28.- Teaching ethics that honor the patient's and the provider's voice: The role of clinical integrity.
Int J Psychiatry Med. 2018 Nov;53(5-6):445-454. doi: 10.1177/0091217418791445. Epub 2018 Aug 4.
Abstract
Medical ethics training is as variable as it is widespread. Previous research has indicated that medical learners find systematic approaches to ethical dilemmas to be helpful. This article describes a bioethics educational module. It includes an overview of common bioethical principles and presents a tool for organizing health-care providers' thinking and discussions about challenging ethical dilemmas. We discuss an area of bioethics that is often neglected, clinical integrity, and the role that a health-care provider's clinical integrity plays in ethical decision-making. We provide several hypothetical ethical vignettes for practice and discussion using the clinical integrity tool. The article also describes how this module has been implemented in one medical education setting and provides suggestions for educators.
29.- The Pitfalls of Proceduralism: An Exploration of the Goods Internal to the Practice of Clinical Ethics Consultation. Friedrich AB1.
HEC Forum. 2018 Dec;30(4):389-403. doi: 10.1007/s10730-018-9359-2.
Abstract
In an age of professionalization and specialization, the practice of clinical ethics is facing an identity crisis. Are clinical ethicists moral experts, ethics experts, or merely quasi-lawyers giving legal advice? Are they extensions of the hospital, always working to advance the hospital's interests? Or is there another option? Since 1998, when the American Society for Bioethics and Humanities (ASBH) first issued its Core Competencies for Healthcare Ethics Consultation, there has been debate about the role of standardization and proceduralism in clinical ethics consultation. Now, as ASBH continues to move forward with its credentialing program, proceduralism in clinical ethics must be critically examined. In this paper, I argue that the proceduralist approach to clinical ethics consultation, as espoused by the ASBH's call for credentialing, creates a demeaning experience for all parties involved and precludes goods internal to the practice of clinical ethics consultation from being actualized. As a practice embedded in medicine and in institutions such as the hospital, clinical ethics consultation must define and examine its own goods in order to bring about more than a sterile, law-like solution to difficult moral quandaries, as these sterile solutions leave patients, families, and providers unsatisfied, abandoned, and disappointed. Thus, in an effort to push back against this proceduralism in clinical ethics consultation, I will offer a preliminary exploration of what these goods might be.
30.- Expanding the Horizon of Our Obligations in the Clinician-Patient Relationship.
Truog RD. Hastings Cent Rep. 2017 Jul;47(4):40-41. doi: 10.1002/hast.739. PMID: 28749059
31.- How Should Therapeutic Decisions about Expensive Drugs Be Made in Imperfect Environments? Fleck LM1, Danis M2.
AMA J Ethics. 2017 Feb 1;19(2):147-156. doi: 10.1001/journalofethics.2017.19.2.ecas2-1702.
Abstract
Clinicians must inevitably make therapeutic decisions under nonideal conditions. They practice in circumstances that involve incomplete evidence. They deliver care in health care systems that are complex and poorly coordinated. Each of the patients that they take care of is unique while research offers evidence regarding relatively homogeneous populations of patients. Under these circumstances, many parties-medical scientists, reviewing agencies, insurers, and accountable care organizations-can and should contribute to optimizing the development, approval, funding, and prescription of therapies-particularly expensive and marginally beneficial therapies. In aggregate, they should aspire to achieve a pattern of fair, cost-effective therapeutic decisions to ensure a sustainable health care system. Here we offer some suggestions regarding decisions that physicians might pursue to facilitate fair and cost-effective patient care.
32.- Ethics in Everyday Practice: Pick Up Your Stethoscope.
Rushton CH1, Turner K1 ACN Adv Crit Care. 2016 Oct;27(4):462-464. . PMID: 27959303 DOI: 10.4037/aacnacc2016663
33.- Fundamental Ethical Issues in Unnecessary Surgical Procedures. Tayade MC1, Dalvi SD2.
Clin Diagn Res. 2016 Apr;10(4):JE01-4. doi: 10.7860/JCDR/2016/18958.7694. Epub 2016 Apr 1.
Abstract
In clinical practice performing any surgical procedure is inconsistent because all surgical procedures carry definitely some degree of risk. Worldwide every year millions of patients go under knife, but many of them are enduring great pain and shelling out thousands and dollars for surgeries they don't really need. This review work was planned with an intention to focus attention towards it with reporting cited evidences of unnecessary surgical operations and discuss ethical issues concern with it. In present review the references search included standard citations Google scholar, MEDLINE and PUBMED. We also used Google search engine for screening various news concern with highlighting this topic in community and online media. For articles we go through more than 60 articles from worldwide and 12 news media views from Google search in last one year. We used following quotes for their search-unnecessary surgeries, second opinion, ethical issues in unnecessary surgeries. Geographical variations were also kept in view. Our intension was highlighting ethical issues concern with unnecessary surgical operations. Henceforth we excluded such work that does not concern with ethical issues. Unnecessary surgery is that which is medically unjustifiable when the risks and costs are more than the likely therapeutic benefits or relief to the patient based on the patient's lifestyle requirements. To avoid or minimize such interventions basic seeding of ethics in curriculum and strict laws will definitely helpful in clinical practice. In conclusion, our aim was to highlight this major issue and underline need of competency based medical bioethics education in Indian scenario.
34.- The U.N. Convention on the Rights of the Child: Relevance and Application to Pediatric Clinical Bioethics.
Lansdown G, Lundy L, Goldhagen J. Perspect Biol Med. 2016;58(3):252-66. doi: 10.1353/pbm.2016.0005.
Abstract
This article provides an overview of the relevance and import of the U.N. Convention on the Rights of the Child (CRC) to child health practice and pediatric bioethics. We discuss the four general principles of the CRC that apply to the implementation of all rights contained in the document, the right to health articulated in Article 24, and the important position ascribed to parents in fulfilling the rights of their children. We then examine how the CRC is implemented and monitored in law and practice. The CRC and associated principles of child rights provide strategies for rights-based approaches to clinical practice and health systems, as well as to policy design, professional training, and health services research. In light of the relevance of the CRC and principles of child rights to children's health and child health practice, it follows that there is an intersection between child rights and pediatric bioethics. Pediatric bioethicists and child rights advocates should work together to define this intersection in all domains of pediatric practice.
35.- Child Rights and Clinical Bioethics: Historical Reflections on Modern Medicine and Ethics. Brosco JP.
Perspect Biol Med. 2016;58(3):356-64. doi: 10.1353/pbm.2016.0003.
Abstract
Why might pediatric bioethicists in the United States reject the U.N. Convention on the Rights of the Child (CRC) as a framework for resolving ethical issues? The essays in this issue present arguments and counterarguments regarding the usefulness of the CRC in various clinical and research cases. But underlying this debate are two historical factors that help explain the seeming paradox of pediatric bioethicists' arguing against child's rights. First, the profession of clinical bioethics emerged in the 1970s as one component of modern medicine's focus on improving health through the application of technologically sophisticated treatments. The everyday work of U.S. bioethicists thus usually involves emerging technologies or practices in clinical or laboratory settings; the articles of the CRC, in contrast, seem better suited to addressing broad policy issues that affect the social determinants of health. Second, U.S. child health policy veered away from a more communitarian approach in the early 20th century for reasons of demography that were reinforced by ideology and concerns about immigration. The divide between clinical medicine and public health in the United States, as well as the relatively meager social safety net, are not based on a failure to recognize the rights of children. Indeed, there is some historical evidence to suggest that "rights language" has hindered progress on child health and well-being in the United States. In today's political climate, efforts to ensure that governments pledge to treat children in accordance with their status as human beings (a child right's perspective) are less likely to improve child health than robust advocacy on behalf of children's unique needs, especially as novel models of health-care financing emerge.