Pub Date : 2023-12-19DOI: 10.1177/14777509231216027
Antony Lempert
Medically unnecessary penile circumcision (MUPC) performed on a non-consenting child has been the subject of increasing critical attention in recent years. This paper provides a behind-the-scenes narrative of the politics of ethical policymaking in the United Kingdom in this area including a discussion about some potential barriers to reform. After a brief overview of ethical guidance for medically unnecessary surgical procedures on children in general and on their genitalia in particular, the paper takes a closer look at three contemporary documents released by UK medical bodies and highlights the unique ethical and safeguarding contradictions in this area. The outcomes of initiatives aimed at engaging constructively with the medical bodies and encouraging wider debate are then described, along with some of the main obstacles to engagement and counter-arguments employed. MUPC is subsequently discussed in a wider societal context, highlighting why serious safeguarding concerns have been raised about what many people believe to be a harmful, preventable practice hiding ‘in plain sight’. The paper ends by calling for UK MUPC guidance to be made consistent with the body of guidance that UK doctors are expected to follow.
{"title":"Roadblocks to reforming UK guidelines on medically unnecessary penile circumcision: inconsistent safeguarding of bodily integrity","authors":"Antony Lempert","doi":"10.1177/14777509231216027","DOIUrl":"https://doi.org/10.1177/14777509231216027","url":null,"abstract":"Medically unnecessary penile circumcision (MUPC) performed on a non-consenting child has been the subject of increasing critical attention in recent years. This paper provides a behind-the-scenes narrative of the politics of ethical policymaking in the United Kingdom in this area including a discussion about some potential barriers to reform. After a brief overview of ethical guidance for medically unnecessary surgical procedures on children in general and on their genitalia in particular, the paper takes a closer look at three contemporary documents released by UK medical bodies and highlights the unique ethical and safeguarding contradictions in this area. The outcomes of initiatives aimed at engaging constructively with the medical bodies and encouraging wider debate are then described, along with some of the main obstacles to engagement and counter-arguments employed. MUPC is subsequently discussed in a wider societal context, highlighting why serious safeguarding concerns have been raised about what many people believe to be a harmful, preventable practice hiding ‘in plain sight’. The paper ends by calling for UK MUPC guidance to be made consistent with the body of guidance that UK doctors are expected to follow.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"11 9","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138959936","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-12-12DOI: 10.1177/14777509231218203
Barry Lyons, Luna Dolezal
This paper is particularly concerned with shame, sometimes considered the ‘master emotion’, and its possible role in affecting the consent process, specifically where that shame relates to the issue of diminished health literacy. We suggest that the absence of exploration of affective issues in general during the consent process is problematic, as emotions commonly impact upon our decision-making process. Experiencing shame in the healthcare environment can have a significant influence on choices related to health and healthcare, and may lead to discussions of possibilities and alternatives being closed off. In the case of impaired health literacy we suggest that it obstructs the narrowing of the epistemic gap between clinician and patient normally achieved through communication and information provision. Health literacy shame prevents acknowledgement of this barrier. The consequence is that it may render consent less effective than it otherwise might have been in protecting the person's autonomy. We propose that the absence of consideration of health literacy shame during the consent process diminishes the possibility of the patient exerting full control over their choices, and thus bodily integrity.
{"title":"Shame, health literacy and consent","authors":"Barry Lyons, Luna Dolezal","doi":"10.1177/14777509231218203","DOIUrl":"https://doi.org/10.1177/14777509231218203","url":null,"abstract":"This paper is particularly concerned with shame, sometimes considered the ‘master emotion’, and its possible role in affecting the consent process, specifically where that shame relates to the issue of diminished health literacy. We suggest that the absence of exploration of affective issues in general during the consent process is problematic, as emotions commonly impact upon our decision-making process. Experiencing shame in the healthcare environment can have a significant influence on choices related to health and healthcare, and may lead to discussions of possibilities and alternatives being closed off. In the case of impaired health literacy we suggest that it obstructs the narrowing of the epistemic gap between clinician and patient normally achieved through communication and information provision. Health literacy shame prevents acknowledgement of this barrier. The consequence is that it may render consent less effective than it otherwise might have been in protecting the person's autonomy. We propose that the absence of consideration of health literacy shame during the consent process diminishes the possibility of the patient exerting full control over their choices, and thus bodily integrity.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"30 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139008913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-12-01Epub Date: 2022-04-07DOI: 10.1177/14777509221091086
Priscilla Alderson, Deborah Bowman, Joe Brierley, Nathalie Dedieu, Martin J Elliott, Jonathan Montgomery, Hugo Wellesley
Background: This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children's consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families' informed consent to surgery.
Results: The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices.
Conclusion: We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children's rights.
{"title":"Living bioethics, theories and children's consent to heart surgery.","authors":"Priscilla Alderson, Deborah Bowman, Joe Brierley, Nathalie Dedieu, Martin J Elliott, Jonathan Montgomery, Hugo Wellesley","doi":"10.1177/14777509221091086","DOIUrl":"10.1177/14777509221091086","url":null,"abstract":"<p><strong>Background: </strong>This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children's consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families' informed consent to surgery.</p><p><strong>Results: </strong>The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices.</p><p><strong>Conclusion: </strong>We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children's rights.</p>","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":" ","pages":"418-426"},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10654030/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48875709","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-07DOI: 10.1177/14777509231208376
Ryan Hart
In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of relating to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon.
{"title":"Chemo sickness as existential feeling: A conceptual contribution to person-centered phenomenological oncology care","authors":"Ryan Hart","doi":"10.1177/14777509231208376","DOIUrl":"https://doi.org/10.1177/14777509231208376","url":null,"abstract":"In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of relating to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"50 219","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135540461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-06DOI: 10.1177/14777509231210795
Aleksandra Glos
This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion on the clinical, legal and social planes.
{"title":"Informal caregivers – A missing voice in clinical ethics","authors":"Aleksandra Glos","doi":"10.1177/14777509231210795","DOIUrl":"https://doi.org/10.1177/14777509231210795","url":null,"abstract":"This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion on the clinical, legal and social planes.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"65 11","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135684839","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-11-03DOI: 10.1177/14777509231210770
Karel-Bart Celie, Allyn Auslander, Stuart Kuschner
The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed to 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions.
{"title":"Communicating conviction: A pilot study of patient perspectives on guidance during medical decision-making in the United States","authors":"Karel-Bart Celie, Allyn Auslander, Stuart Kuschner","doi":"10.1177/14777509231210770","DOIUrl":"https://doi.org/10.1177/14777509231210770","url":null,"abstract":"The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed to 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"13 71","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135821687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-30DOI: 10.1177/14777509231210758
Grace Hong, Kyrie Eleyson Baden, Rolanda Olds, Elisha Injeti, Julia Muzzy, Justin W Cole, Dennis Sullivan
Providing in-utero treatments to target specific conditions in the fetus is a relatively new approach in perinatal care, with the vast majority of these treatments being used off-label. The high degree of off-label medication use in the perinatal and neonatal settings raises concern for the safety of both the fetuses and expectant mothers. This report presents two examples of intra-amniotic drug administration based on reported clinical cases. From the ethical framework of medical principlism, we examine the competing ethical duties of autonomy, beneficence, and non-maleficence in this setting. We then lay out three fundamental ethical principles for obtaining informed consent and maximizing clinical benefit.
{"title":"The ethics of intra-amniotic drug administration in perinatal clinical practice","authors":"Grace Hong, Kyrie Eleyson Baden, Rolanda Olds, Elisha Injeti, Julia Muzzy, Justin W Cole, Dennis Sullivan","doi":"10.1177/14777509231210758","DOIUrl":"https://doi.org/10.1177/14777509231210758","url":null,"abstract":"Providing in-utero treatments to target specific conditions in the fetus is a relatively new approach in perinatal care, with the vast majority of these treatments being used off-label. The high degree of off-label medication use in the perinatal and neonatal settings raises concern for the safety of both the fetuses and expectant mothers. This report presents two examples of intra-amniotic drug administration based on reported clinical cases. From the ethical framework of medical principlism, we examine the competing ethical duties of autonomy, beneficence, and non-maleficence in this setting. We then lay out three fundamental ethical principles for obtaining informed consent and maximizing clinical benefit.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"360 10","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136069559","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-17DOI: 10.1177/14777509231208366
Jeffrey Soon-Yit Lee, Benjamin Wei-Liang Ng, Mohammad Firdaus bin Abdul Aziz
Adolescent pregnancy results from the complex interaction between various internal and external vulnerabilities. These vulnerabilities persist after the infant's birth when the adolescent becomes a parent. Adolescent parents are unfairly stereotyped as unmotivated and incompetent. Some legislations prohibit adolescents from giving consent on the grounds of incompetency. Despite being different, “competency” is frequently used interchangeably with “capacity”; thus, incompetent individuals are often mistaken to lack capacity. Consequently, legally incompetent adolescents who became parents are frequently disregarded during their infant's decision-making process. This article discusses the distinction between the competence and capacity of adolescent parents, the various vulnerabilities that contribute to an adolescent's incompetency, and advocates respect for the adolescent's capacity in making decisions for her infant. We propose a workflow for obtaining informed consent for infants born to adolescents ethically guided by the respect for individuals principle while staying within the country's legal framework.
{"title":"The ethics of informed consent for infants born to adolescents: A case study from Malaysia","authors":"Jeffrey Soon-Yit Lee, Benjamin Wei-Liang Ng, Mohammad Firdaus bin Abdul Aziz","doi":"10.1177/14777509231208366","DOIUrl":"https://doi.org/10.1177/14777509231208366","url":null,"abstract":"Adolescent pregnancy results from the complex interaction between various internal and external vulnerabilities. These vulnerabilities persist after the infant's birth when the adolescent becomes a parent. Adolescent parents are unfairly stereotyped as unmotivated and incompetent. Some legislations prohibit adolescents from giving consent on the grounds of incompetency. Despite being different, “competency” is frequently used interchangeably with “capacity”; thus, incompetent individuals are often mistaken to lack capacity. Consequently, legally incompetent adolescents who became parents are frequently disregarded during their infant's decision-making process. This article discusses the distinction between the competence and capacity of adolescent parents, the various vulnerabilities that contribute to an adolescent's incompetency, and advocates respect for the adolescent's capacity in making decisions for her infant. We propose a workflow for obtaining informed consent for infants born to adolescents ethically guided by the respect for individuals principle while staying within the country's legal framework.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"43 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136034252","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-16DOI: 10.1177/14777509231201265
Jared N Smith, Natalie Dorfman, Meghan Hurley, Ilona Cenolli, Kristin Kostick-Quenet, Gabriel Lazaro-Munoz, Eric A Storch, Jennifer Blumenthal-Barby
Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process enta
{"title":"Perspectives on informed assent and bodily integrity in prospective deep brain stimulation for youth with refractory obsessive-compulsive disorder","authors":"Jared N Smith, Natalie Dorfman, Meghan Hurley, Ilona Cenolli, Kristin Kostick-Quenet, Gabriel Lazaro-Munoz, Eric A Storch, Jennifer Blumenthal-Barby","doi":"10.1177/14777509231201265","DOIUrl":"https://doi.org/10.1177/14777509231201265","url":null,"abstract":"Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process enta","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":"38 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135308488","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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