Pub Date : 2023-06-12DOI: 10.1177/14777509231182003
M. Rus, C. Gastmans
One of the common domains in health care in which the concept of vulnerability is used is end-of-life care, including euthanasia and assisted suicide (EAS). Since different uses and implications of the notion have been recognised in the literature on EAS, this paper aims to analyse them and reflect on who is the most vulnerable in the context of EAS. A prior exploratory review of the literature has served as a starting point for the discussion. We concluded that vulnerability is a complex, multi-perspective and multi-layered concept, which implies the vulnerability of different stakeholders involved in EAS practices and vulnerability in different aspects of being human (i.e., physical, mental, moral, social and spiritual). A comprehensive understanding of the notion of vulnerability, which balances as well as complements the concept of autonomy, seems to be an indispensable element of the discourse on EAS.
{"title":"Euthanasia and assisted suicide: Who are the vulnerable?","authors":"M. Rus, C. Gastmans","doi":"10.1177/14777509231182003","DOIUrl":"https://doi.org/10.1177/14777509231182003","url":null,"abstract":"One of the common domains in health care in which the concept of vulnerability is used is end-of-life care, including euthanasia and assisted suicide (EAS). Since different uses and implications of the notion have been recognised in the literature on EAS, this paper aims to analyse them and reflect on who is the most vulnerable in the context of EAS. A prior exploratory review of the literature has served as a starting point for the discussion. We concluded that vulnerability is a complex, multi-perspective and multi-layered concept, which implies the vulnerability of different stakeholders involved in EAS practices and vulnerability in different aspects of being human (i.e., physical, mental, moral, social and spiritual). A comprehensive understanding of the notion of vulnerability, which balances as well as complements the concept of autonomy, seems to be an indispensable element of the discourse on EAS.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43133180","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 : 2023-06-01DOI: 10.1177/14777509211063590
Namithaa Sunil Kumar, Pippa Sipanoun, Mariana Dittborn, Mary Doyle, Sarah Aylett
Objectives: During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics.
Design: A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric Network, a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues.
Results: Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government 'stay at home' advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns.
Conclusion: Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children.
{"title":"North Thames multi-centre service evaluation: Ethical considerations during COVID-19.","authors":"Namithaa Sunil Kumar, Pippa Sipanoun, Mariana Dittborn, Mary Doyle, Sarah Aylett","doi":"10.1177/14777509211063590","DOIUrl":"https://doi.org/10.1177/14777509211063590","url":null,"abstract":"<p><strong>Objectives: </strong>During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics.</p><p><strong>Design: </strong>A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric Network, a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues.</p><p><strong>Results: </strong>Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; <i>n</i> = 33). Sub-optimal paediatric care due to redeployment (61%; <i>n</i> = 28) and the impact of visiting restrictions on CYP's mental health (79%; <i>n</i> = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; <i>n</i> = 45) and government 'stay at home' advice (89%; <i>n</i> = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns.</p><p><strong>Conclusion: </strong>Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children.</p>","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/9e/d3/10.1177_14777509211063590.PMC10196678.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10290189","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 : 2023-06-01Epub Date: 2022-12-01DOI: 10.1177/14777509221143016
Sai Kaushik Yeturu, Susan M Lerner, Jacob M Appel
Transplant centers and physicians in the United States have limited guidance on the information which they can and cannot provide to transplant candidates regarding donors of potential organs. Patients may refuse organs for a variety of reasons ranging from pernicious requests including racism to misinformation about emerging medicine as with the COVID-19 vaccine and infection. Patient autonomy, organ stewardship, and equity are often at odds in these cases, but precedent indeed exists to help address these challenges. This work uses such cases to highlight the urgent need for uniform, national policy prohibiting informational requests unrelated to well-established risks.
{"title":"Refusal of transplant organs for non-medical reasons including COVID-19 status.","authors":"Sai Kaushik Yeturu, Susan M Lerner, Jacob M Appel","doi":"10.1177/14777509221143016","DOIUrl":"10.1177/14777509221143016","url":null,"abstract":"<p><p>Transplant centers and physicians in the United States have limited guidance on the information which they can and cannot provide to transplant candidates regarding donors of potential organs. Patients may refuse organs for a variety of reasons ranging from pernicious requests including racism to misinformation about emerging medicine as with the COVID-19 vaccine and infection. Patient autonomy, organ stewardship, and equity are often at odds in these cases, but precedent indeed exists to help address these challenges. This work uses such cases to highlight the urgent need for uniform, national policy prohibiting informational requests unrelated to well-established risks.</p>","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9720467/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44611979","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 : 2023-06-01DOI: 10.1177/14777509221077387
N. Lynøe, A. Lindblad, I. Engström, M. Sandlund, N. Juth
Background Physician-assisted suicide is a controversial issue and has sometimes raised emotion-laden reactions. Against this backdrop, we have analyzed how Swedish physicians are reasoning about physician-assisted suicide if it were to be legalized. Methods and participants We conducted a cross-sectional study and analyzed 819 randomly selected physicians’ responses from general practitioners, geriatricians, internists, oncologists, psychiatrists, surgeons, and all palliativists. Apart from the main questions about their attitude toward physician-assisted suicide, we also asked what would happen with the respondents’ own trust in healthcare if physician-assisted suicide were legalized. Response options were that trust would decrease, not be influenced, or would increase. Results We identified a strong statistical association between on the one hand those whose own trust would increase and who were pro physician-assisted suicide, and on the other hand those who were against physician-assisted suicide and whose own trust would decrease [relative risk: 16.7 (95% confidence interval: 10.2–27.2)]. Among those whose own trust would not be influenced (n = 456), 60% were pro pysician-assisted suicide, 16% were against, and 24% were undecided. Of those whose trust would increase or not be influenced, a large majority supported autonomy-based arguments, whereas those whose trust would decrease supported non-maleficence-based arguments. Conclusion Analyzing the answers after having divided respondents into those whose own trust in healthcare would decrease or increase and not be influenced brings about interesting results such as how the three groups prioritize arguments for and against physician-assisted suicide. This way of analyzing the data seems to be a promising strategy when identifying value-impregnated factual claims.
{"title":"Values at stake at the end of life: Analyses of personal preferences among Swedish physicians","authors":"N. Lynøe, A. Lindblad, I. Engström, M. Sandlund, N. Juth","doi":"10.1177/14777509221077387","DOIUrl":"https://doi.org/10.1177/14777509221077387","url":null,"abstract":"Background Physician-assisted suicide is a controversial issue and has sometimes raised emotion-laden reactions. Against this backdrop, we have analyzed how Swedish physicians are reasoning about physician-assisted suicide if it were to be legalized. Methods and participants We conducted a cross-sectional study and analyzed 819 randomly selected physicians’ responses from general practitioners, geriatricians, internists, oncologists, psychiatrists, surgeons, and all palliativists. Apart from the main questions about their attitude toward physician-assisted suicide, we also asked what would happen with the respondents’ own trust in healthcare if physician-assisted suicide were legalized. Response options were that trust would decrease, not be influenced, or would increase. Results We identified a strong statistical association between on the one hand those whose own trust would increase and who were pro physician-assisted suicide, and on the other hand those who were against physician-assisted suicide and whose own trust would decrease [relative risk: 16.7 (95% confidence interval: 10.2–27.2)]. Among those whose own trust would not be influenced (n = 456), 60% were pro pysician-assisted suicide, 16% were against, and 24% were undecided. Of those whose trust would increase or not be influenced, a large majority supported autonomy-based arguments, whereas those whose trust would decrease supported non-maleficence-based arguments. Conclusion Analyzing the answers after having divided respondents into those whose own trust in healthcare would decrease or increase and not be influenced brings about interesting results such as how the three groups prioritize arguments for and against physician-assisted suicide. This way of analyzing the data seems to be a promising strategy when identifying value-impregnated factual claims.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49336439","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 : 2023-05-18DOI: 10.1177/14777509231175406
Dylan Z. Taylor, Amy Caruso-Brown, J. Brenner
Restrictive visitation policies produce inequities in healthcare that have meaningful consequences for patients’ health and well-being. There is a surplus of existing literature exploring the consequences of reduced visitation in the setting of pediatric patients lacking decision-making capacity, but relatively little scholarship addressing visitation restriction for less vulnerable adults possessing capacity. Here, we present the case of a patient who suffered serious complications of childbirth, during the delivery of her healthy newborn, leading to prolonged hospitalization. During her treatment course, she was subsequently denied visitation with her newborn, who had been discharged from the hospital, and this had detrimental effects on her recovery. Hospital policies restricting visitation during the COVID-19 pandemic were intended to reduce the risk of disease exposure for both patients and staff, despite conflicting evidence demonstrating this benefit. In contrast, they often have negative effects on patient stress, mood, and physical recovery. The sequelae of this US-based case study argue the need for more holistic hospital visitation policies, placing a specific lens on adult patients receiving a visitation from their newborn children.
{"title":"One should not separate a newborn from their hospitalized parent: A retrospective case analysis","authors":"Dylan Z. Taylor, Amy Caruso-Brown, J. Brenner","doi":"10.1177/14777509231175406","DOIUrl":"https://doi.org/10.1177/14777509231175406","url":null,"abstract":"Restrictive visitation policies produce inequities in healthcare that have meaningful consequences for patients’ health and well-being. There is a surplus of existing literature exploring the consequences of reduced visitation in the setting of pediatric patients lacking decision-making capacity, but relatively little scholarship addressing visitation restriction for less vulnerable adults possessing capacity. Here, we present the case of a patient who suffered serious complications of childbirth, during the delivery of her healthy newborn, leading to prolonged hospitalization. During her treatment course, she was subsequently denied visitation with her newborn, who had been discharged from the hospital, and this had detrimental effects on her recovery. Hospital policies restricting visitation during the COVID-19 pandemic were intended to reduce the risk of disease exposure for both patients and staff, despite conflicting evidence demonstrating this benefit. In contrast, they often have negative effects on patient stress, mood, and physical recovery. The sequelae of this US-based case study argue the need for more holistic hospital visitation policies, placing a specific lens on adult patients receiving a visitation from their newborn children.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48540798","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 : 2023-05-08DOI: 10.1177/14777509231174753
Perrine Galmiche, Lisa Carayon, N. Foureur
The implementation of pre-exposure prophylaxis (PrEP) as a new tool for prevention against HIV raised particular ethical concerns regarding the individuals’ and the collective's best interests in France. It was questioned whether the beneficence of taking or prescribing PrEP regarding its high efficacy to protect people from HIV is always more important than the maleficence represented by the risks involved, such as healthy people taking a pill with side effects, the growth of sexually transmitted infections or the potential generalization of risk-taking sexual behaviour. The main objective of this study was to explore patients’ and health professionals’ ethical questioning on PrEP. Sixty-nine qualitative interviews were conducted with 45 users and 24 healthcare professionals. Overall, this study shows that those primarily concerned by PrEP tend to dismiss ethical questions regarding PrEP itself in the name of its efficacy and the empowerment it allows, but they would rather stress the impact PrEP can have on individuals’ sexual behaviour and how it can affect their autonomy if it is prescribed blindly without taking into consideration the specific living context and life history of each PrEP user.
{"title":"Three years into the implementation of PrEP in France: What do users and health professionals say? (ANRS 95036)","authors":"Perrine Galmiche, Lisa Carayon, N. Foureur","doi":"10.1177/14777509231174753","DOIUrl":"https://doi.org/10.1177/14777509231174753","url":null,"abstract":"The implementation of pre-exposure prophylaxis (PrEP) as a new tool for prevention against HIV raised particular ethical concerns regarding the individuals’ and the collective's best interests in France. It was questioned whether the beneficence of taking or prescribing PrEP regarding its high efficacy to protect people from HIV is always more important than the maleficence represented by the risks involved, such as healthy people taking a pill with side effects, the growth of sexually transmitted infections or the potential generalization of risk-taking sexual behaviour. The main objective of this study was to explore patients’ and health professionals’ ethical questioning on PrEP. Sixty-nine qualitative interviews were conducted with 45 users and 24 healthcare professionals. Overall, this study shows that those primarily concerned by PrEP tend to dismiss ethical questions regarding PrEP itself in the name of its efficacy and the empowerment it allows, but they would rather stress the impact PrEP can have on individuals’ sexual behaviour and how it can affect their autonomy if it is prescribed blindly without taking into consideration the specific living context and life history of each PrEP user.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46154637","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 : 2023-05-07DOI: 10.1177/14777509231173572
Jonathan Lewis
As we all know, respect for a patient’s ability and freedom to make decisions about healthcare matters that concern them (i.e. ‘respect for autonomy’) is necessary for the ethical conduct of clinical practice. In contemporary liberal societies, the slogan ‘the doctor knows best’ is no longer afforded much currency. Indeed, even when the spectre of paternalism rears its head in specific, unusual situations, for example, during the COVID-19 pandemic, it tends to be accompanied by a sense of unease among ethicists, legal scholars, patients, and healthcare practitioners. In most jurisdictions worldwide, informed consent is seen as the application of the principle of ‘respect for autonomy’, a perception that has been supported by now classic discussions of patient autonomy in medical ethics and law. The roots of the alignment of informed consent and respect for autonomy can be found in late-1950s US case law, which employed the language of autonomy to introduce the concept of informed consent to clinical medicine. These developments in law permeated medical law, ethics, education, and Western clinical practice in the 1970s. Today, the initial legally motivated links between the concept of autonomy and informed consent have become conceptually entrenched in the domains of healthcare and biomedical research, and the conflation of these two concepts is now a widespread assumption in law and clinical and research ethics frameworks.3–6 In short, the courts, regulators, clinical ethics teams, and biomedical researchers have assumed that when an individual gives valid consent, it is autonomous. This assumption is deeply problematic with wideranging ethical, legal, and well-being implications. From a theoretical point of view, informed consent is the standard mechanism through which a patient exercises their liberty at law, giving permission for, and setting the limits of, bodily interference.3–8 By contrast, according to Feinberg, the concept of autonomy can refer to the capacity to govern oneself, the authentic exercise or achievement of selfgovernment, a value that one instantiates such that one should be afforded equal standing, or the value that paternalism, coercion, and other malign influences fail to respect. The concept of informed consent fails to adequately capture any of these interpretations of autonomy. The practice of informed consent does not take into account whether an individual has rationally responded to their values, desires, or motives or whether these values are truly theirs. In addition, standard requirements for informed consent are such that some individuals who should arguably be afforded the opportunity to make claims to autonomy are denied. Further, the giving of valid consent does not imply that the decision has not arisen from normatively significant external influence. Finally, because the capacity conditions for valid consent are framed in purely cognitive terms, consent does not account for important relational or embodied (
{"title":"Respect for autonomy: Consent doesn’t cut it","authors":"Jonathan Lewis","doi":"10.1177/14777509231173572","DOIUrl":"https://doi.org/10.1177/14777509231173572","url":null,"abstract":"As we all know, respect for a patient’s ability and freedom to make decisions about healthcare matters that concern them (i.e. ‘respect for autonomy’) is necessary for the ethical conduct of clinical practice. In contemporary liberal societies, the slogan ‘the doctor knows best’ is no longer afforded much currency. Indeed, even when the spectre of paternalism rears its head in specific, unusual situations, for example, during the COVID-19 pandemic, it tends to be accompanied by a sense of unease among ethicists, legal scholars, patients, and healthcare practitioners. In most jurisdictions worldwide, informed consent is seen as the application of the principle of ‘respect for autonomy’, a perception that has been supported by now classic discussions of patient autonomy in medical ethics and law. The roots of the alignment of informed consent and respect for autonomy can be found in late-1950s US case law, which employed the language of autonomy to introduce the concept of informed consent to clinical medicine. These developments in law permeated medical law, ethics, education, and Western clinical practice in the 1970s. Today, the initial legally motivated links between the concept of autonomy and informed consent have become conceptually entrenched in the domains of healthcare and biomedical research, and the conflation of these two concepts is now a widespread assumption in law and clinical and research ethics frameworks.3–6 In short, the courts, regulators, clinical ethics teams, and biomedical researchers have assumed that when an individual gives valid consent, it is autonomous. This assumption is deeply problematic with wideranging ethical, legal, and well-being implications. From a theoretical point of view, informed consent is the standard mechanism through which a patient exercises their liberty at law, giving permission for, and setting the limits of, bodily interference.3–8 By contrast, according to Feinberg, the concept of autonomy can refer to the capacity to govern oneself, the authentic exercise or achievement of selfgovernment, a value that one instantiates such that one should be afforded equal standing, or the value that paternalism, coercion, and other malign influences fail to respect. The concept of informed consent fails to adequately capture any of these interpretations of autonomy. The practice of informed consent does not take into account whether an individual has rationally responded to their values, desires, or motives or whether these values are truly theirs. In addition, standard requirements for informed consent are such that some individuals who should arguably be afforded the opportunity to make claims to autonomy are denied. Further, the giving of valid consent does not imply that the decision has not arisen from normatively significant external influence. Finally, because the capacity conditions for valid consent are framed in purely cognitive terms, consent does not account for important relational or embodied (","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47128190","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 : 2023-05-07DOI: 10.1177/14777509231172317
Johanna Eichinger, B. Elger, Tian Yi Jiao, I. Koné, D. Shaw
The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness.
{"title":"Parents as secondary patients: Towards a more family-centred approach to care","authors":"Johanna Eichinger, B. Elger, Tian Yi Jiao, I. Koné, D. Shaw","doi":"10.1177/14777509231172317","DOIUrl":"https://doi.org/10.1177/14777509231172317","url":null,"abstract":"The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47449796","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 : 2023-04-26DOI: 10.1177/14777509231162476
E. Prendergast
This paper examines the concept of medical necessity as it relates to mental health care rationing, arguing that the normal functioning model of medical necessity is insufficient because it fails to cohere with an important aim and function of mental health care, which is to provide support for individuals in abusive or otherwise difficult personal relationships.
{"title":"Medical necessity, mental health, and justice","authors":"E. Prendergast","doi":"10.1177/14777509231162476","DOIUrl":"https://doi.org/10.1177/14777509231162476","url":null,"abstract":"This paper examines the concept of medical necessity as it relates to mental health care rationing, arguing that the normal functioning model of medical necessity is insufficient because it fails to cohere with an important aim and function of mental health care, which is to provide support for individuals in abusive or otherwise difficult personal relationships.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43302370","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 : 2023-04-24DOI: 10.1177/14777509231169898
J. Ioannidis
Medical necessity (claiming that a medical intervention or care is – at minimum – reasonable, appropriate and acceptable) depends on empirical evidence and on the interpretation of that evidence. Evidence and its interpretation define the standard of care. This commentary argues that both the evidence base and its interpretation are currently weak gatekeepers. Empirical meta-research suggests that very few medical interventions have high quality evidence in support of their effectiveness and very few of them also have relatively thorough assessments of their potential harms. Therefore, evidence on the risk-benefit ratios carries almost always very large uncertainty. Arbitration about medical necessity is thus left to the interpretation process. Professional guidelines are notoriously unreliable and biased in this regard. Regulatory approval ends up being the key arbitrator, but over the years the regulatory process has been subverted. Regulatory approval currently does not mean that an intervention has a favourable risk-benefit ratio, but simply that it can be marketed, sold and made profit from. The process leads to a tragedy of commons where the final victim is society at large: medical necessity is invoked as an alibi for medicine to absorb societal resources.
{"title":"Medical necessity under weak evidence and little or perverse regulatory gatekeeping","authors":"J. Ioannidis","doi":"10.1177/14777509231169898","DOIUrl":"https://doi.org/10.1177/14777509231169898","url":null,"abstract":"Medical necessity (claiming that a medical intervention or care is – at minimum – reasonable, appropriate and acceptable) depends on empirical evidence and on the interpretation of that evidence. Evidence and its interpretation define the standard of care. This commentary argues that both the evidence base and its interpretation are currently weak gatekeepers. Empirical meta-research suggests that very few medical interventions have high quality evidence in support of their effectiveness and very few of them also have relatively thorough assessments of their potential harms. Therefore, evidence on the risk-benefit ratios carries almost always very large uncertainty. Arbitration about medical necessity is thus left to the interpretation process. Professional guidelines are notoriously unreliable and biased in this regard. Regulatory approval ends up being the key arbitrator, but over the years the regulatory process has been subverted. Regulatory approval currently does not mean that an intervention has a favourable risk-benefit ratio, but simply that it can be marketed, sold and made profit from. The process leads to a tragedy of commons where the final victim is society at large: medical necessity is invoked as an alibi for medicine to absorb societal resources.","PeriodicalId":53540,"journal":{"name":"Clinical Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48475754","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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