Christy Simpson
Dalhousie University, Bioethics, Faculty Member
This article describes a new model for ethics support for Capital Health (a health region in Nova Scotia). With its emphasis on building a culture of ethics, many innovative elements are integral to this model and its future success.... more
This article describes a new model for ethics support for Capital Health (a health region in Nova Scotia). With its emphasis on building a culture of ethics, many innovative elements are integral to this model and its future success. Particular emphasis is on organizational healthcare ethics and meaningful participation. Concerns about volunteer burden, urban and rural ethics needs, and varying exposure to prior ethics support will also be met by this model.
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Research Interests: Sociology, Philosophy, Ethics, Medical Law, Philosophy of Medicine, and 14 moreSocial Justice, Economic Justice, Organizational Justice, Health Care Ethics, Urban Health, Medicine, Canada, Rural Health, Humans, Nova Scotia, Social Environment, Organizational Ethics, Rural Health Services, and Regional health planning
This chapter undertakes an examination of the ways in which the deficit perspective has pervaded the rural health and rural health ethics literature. We begin by describing the deficit perspective and highlight four sets of presumptions... more
This chapter undertakes an examination of the ways in which the deficit perspective has pervaded the rural health and rural health ethics literature. We begin by describing the deficit perspective and highlight four sets of presumptions that it is based upon. We then demonstrate how deeply the deficit perspective is embedded in the rural health literature, with a particular emphasis on the ways in which it influences and shapes rural health ethics. An analysis of the ethics of deficit shows how problematic this perspective can be and supports the conclusion of this chapter, namely that the deficit perspective should be (at the very least) balanced with a more positivist paradigm.
Research Interests: Sociology and Positivism
Decision-making about health technologies is complex. An aspect that is not often addressed is the potential impact of both hope and hype regarding these technologies. This article discusses the commercialization of hope and how... more
Decision-making about health technologies is complex. An aspect that is not often addressed is the potential impact of both hope and hype regarding these technologies. This article discusses the commercialization of hope and how "hope hype" can influence our decision-making. As health leaders have a pivotal role in how these types of decisions are made, opportunities for and suggestions related to structuring decision-making processes to critically engage with "hope hype" are also canvassed.
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Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) are suboptimal given the complexity of the procedure, lack of options, and parent emotional duress. We studied if parents perceived choice... more
Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) are suboptimal given the complexity of the procedure, lack of options, and parent emotional duress. We studied if parents perceived choice when consenting to BMT, if they felt the consent provided was valid, and how the consent process affected them. Telephone or face-to-face interviews were recorded using a semi-structured interview outline. Interview transcripts were anonymized, and independently analyzed by three reviewers. Twenty parents of twelve children participated, including five bereaved parents. There were no differences in patient transplant characteristics between the eligible and study groups. Divorced or separated parents were underrepresented in the participant group. Fifteen parents felt personally compelled to consent; most (18) denied feeling external medical pressure to do so. All parents felt their consent was valid and most reported adequate levels of freedom, capacity, and information. Expectations formulated during the consent process strongly influenced parents' experience post-BMT. Good communication during consent contributed to trust and therapeutic alliance with physicians following BMT. Late parental stress and anxiety were periodic, but very high in some families. Parents feel consent for pediatric BMT is valid, despite feeling personally compelled to consent. Strategies aimed at nurturing hope and realistic expectations may assist in improving the consent process, while diminishing long-term stressors.
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The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Thistlethwaite, Jr. (Oxford University Press, 2021), offers a stimulating opportunity to consider the ethics of living solid organ donation in... more
The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Thistlethwaite, Jr. (Oxford University Press, 2021), offers a stimulating opportunity to consider the ethics of living solid organ donation in more depth. Ross and Thistlethwaite detail a framework of five principles—respect for persons, beneficence, justice, vulnerability, and responsibility—that positions prospective living donors as patients. The authors engage readers by applying these principles across a series of examples, issues, and possibilities, the “practice.” Readers may wish to reflect further on the framework's implications, including those related to vulnerability, power, and social justice (to name a few), particularly as these relate to the “theory” of this book. The book is well worth the read for clinicians, ethicists, and others involved in organ donation and transplantation.
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Early on in the development of Practicing Healthcare Ethicists Exploring Professionalization (PHEEP), the founding members recognized the need to address and meet two important goals: (1) the creation of a dynamic, rigorous process to... more
Early on in the development of Practicing Healthcare Ethicists Exploring Professionalization (PHEEP), the founding members recognized the need to address and meet two important goals: (1) the creation of a dynamic, rigorous process to support the exploratory work, and (2) the establishment of the means--deliberative engagement--to generate and justify the substantive content of professionalization-related products, such as practice standards and position statements. Drawing from social justice and deliberative democracy conceptions and insights (among others), the authors identify and describe the core elements of the "process scaffolding" and "deliberative means" that inform PHEEP's deliberative engagement methodology. The paper demonstrates how these process and substantive features have been meaningfully instantiated in the decision making framework established by PHEEP for its use in the development of professionalization-related products by Canadian practicing healthcare ethicists.
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The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (NICU) generally face several challenges. Included in these challenges is the possibility of having access to information and a certain level... more
The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (NICU) generally face several challenges. Included in these challenges is the possibility of having access to information and a certain level of disclosure about the diagnosis, treatment options, and prognosis for their newborn. A related challenge is the ability to have some control over the care of their newborn. In this article, I (first author) share my own experiences of having a child admitted to an NICU, and I discuss how a lack of disclosure affected the decision making and involvement I had in my child's care and hindered my ability to find hope. A loss of hope can both contribute to a sense of powerlessness and exacerbate the negative aspects of these NICU experiences. I argue that when health care providers offer parents the disclosure they want and need, as well as a certain amount of control over the care of their child while in the NICU, the ability of parents to find hope will be increased, and they will be better able to cope successfully in the NICU environment.
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are theoretical models compatible with Canadian lived experience?
The authors believe there is a need to challenge the urban-based ethical norms and biases built into mainstream western bioethical theory and teaching, particularly focusing on rural health practice. In ‘rethinking’ rural bioethics, they... more
The authors believe there is a need to challenge the urban-based ethical norms and biases built into mainstream western bioethical theory and teaching, particularly focusing on rural health practice. In ‘rethinking’ rural bioethics, they drew on interdisciplinary and feminist approaches to identify how traditional bioethics is permeated by urban and tertiary hospital-based perspectives and is primarily predicated on ‘caring for strangers.’ This contrasts with the nature of rural health practice where one is often ‘caring for neighbors,’ immersed in the interconnectedness of rural community life. In attending to these contextual features, the authors noted a deficiency in the traditional ethical values emphasized (such as in principlism) and posited the additional values of place, community and relationships. In this chapter, Simpson and McDonald provide a brief overview of this work in order to ground their reflections on teaching bioethics. From the perspectives of both content and process, they argue that there are important changes educators can make to teaching bioethics in order to better equip health professionals for the ethical issues that arise in their practice. Incorporating these insights into teaching bioethics is well-received by learners, particularly, but not exclusively, by those who practice in rural settings
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This chapter pulls together the arguments advanced in this book to rethink rural health ethics. In particular, we highlight two key premises emerging from a feminist analysis and which run through this book – context and power – and their... more
This chapter pulls together the arguments advanced in this book to rethink rural health ethics. In particular, we highlight two key premises emerging from a feminist analysis and which run through this book – context and power – and their application to rural health and rural health ethics. In doing this we challenge traditional urban-centric approaches to ethics and to health policy and practices. We believe that the development of an ethical framework for rural health care is important both for the field of health ethics and for the development of health policy and practices that better meet the needs of rural residents, rural health providers and rural communities.
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We argue in this chapter for a re-valuing of relationships. While it has long been recognised that a relationship lies at the heart of the health provider-patient interaction, latterly changes in the way in which health services are... more
We argue in this chapter for a re-valuing of relationships. While it has long been recognised that a relationship lies at the heart of the health provider-patient interaction, latterly changes in the way in which health services are provided may have shifted the focus from the relational aspects of the interaction to the transactional and instrumental. We argue that the nature and quality of the relationship between a health provider and a patient may be particularly important and central to the provision of rural health services because of the interrelatedness and corresponding intensity of relationships that often characterises rural settings. We focus in the second half of the chapter on the issue of dual and multiple relationships which are almost inevitable when health providers are based in rural communities but which urban-centric ethical frameworks generally suggest should be avoided. We argue that the nature and quality of relationships in health care practice in general an...
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This chapter demonstrates the value of macro level analysis for rural health ethics and rural health care. We draw together several different strands of discussion about the design and delivery of health care in rural settings, and... more
This chapter demonstrates the value of macro level analysis for rural health ethics and rural health care. We draw together several different strands of discussion about the design and delivery of health care in rural settings, and incorporate the values of place, community and relationships, to help illustrate the ways in which both the deficit perspective and idealisations of rurality may influence health policy decisions. As part of this analysis, we also critically engage with neo-liberalism as a pervasive element in these decisions. The chapter concludes with a macro level analysis of the recruitment and retention of health providers in rural settings to illustrate the relevance of this approach for rural health ethics.
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We argue in this chapter that we need use an ethics lens to critically examine stereotypes that idealise rural life and rural health care and be attentive to the ways in which they inform our thinking, including whether they have any... more
We argue in this chapter that we need use an ethics lens to critically examine stereotypes that idealise rural life and rural health care and be attentive to the ways in which they inform our thinking, including whether they have any negative impacts on rural health providers or patients. We ask whether our nostalgia about rural life and rural health care, as framed by the stereotypes of the idyll and the ideal rural health provider, may be obstructing the development of better policies and decisions about the provision of rural health services, much in the same way that the deficit or dystopia framing, discussed in Chap. 3, may limit the development of health policies and practices. It is our hope that by examining these stereotypes, we will be able to reduce injustice or inequities and make better decisions about providing health care to all citizens, wherever they reside.
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Background Four key challenges have been identified for the informed consent process in pediatric Bone Marrow Transplantation (BMT): 1. The information disclosed is complex, 2. parents are often under significant emotional duress, 3. life... more
Background Four key challenges have been identified for the informed consent process in pediatric Bone Marrow Transplantation (BMT): 1. The information disclosed is complex, 2. parents are often under significant emotional duress, 3. life or death circumstances are perceived, and 4. there is often significant time pressure. The purposes of this study were A. to survey parental perceptions of the validity of the informed consent provided for their child’s BMT, B. to determine if the quality of the consent influenced hope, guilt, anxiety or stress. Methods An information package and informed consent document were mailed to 67 English-speaking parents whose children underwent BMT and were prepared for transplant by one physician using a standardized template at the IWK Health Centre (Halifax, Nova Scotia, Canada) between 1998 and 2002. These parents represented the guardians of 36 children who had undergone BMT. Semi-structured interviews were conducted by phone or in person and audiot...
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This is an "open peer commentary" on a paper in the same issue: Morain et al.'s "When Is It Ethical for Physician-Investigators to Seek Consent From Their Own Patients?".
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This chapter undertakes an examination of the ways in which the deficit perspective has pervaded the rural health and rural health ethics literature. We begin by describing the deficit perspective and highlight four sets of presumptions... more
This chapter undertakes an examination of the ways in which the deficit perspective has pervaded the rural health and rural health ethics literature. We begin by describing the deficit perspective and highlight four sets of presumptions that it is based upon. We then demonstrate how deeply the deficit perspective is embedded in the rural health literature, with a particular emphasis on the ways in which it influences and shapes rural health ethics. An analysis of the ethics of deficit shows how problematic this perspective can be and supports the conclusion of this chapter, namely that the deficit perspective should be (at the very least) balanced with a more positivist paradigm.
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Decision-making about health technologies is complex. An aspect that is not often addressed is the potential impact of both hope and hype regarding these technologies. This article discusses the commercialization of hope and how... more
Decision-making about health technologies is complex. An aspect that is not often addressed is the potential impact of both hope and hype regarding these technologies. This article discusses the commercialization of hope and how "hope hype" can influence our decision-making. As health leaders have a pivotal role in how these types of decisions are made, opportunities for and suggestions related to structuring decision-making processes to critically engage with "hope hype" are also canvassed.
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Trisomy 18 (T18) is a genetic disorder with cardiac lesions in up to 90% of patients. Cardiac surgery is not frequently offered because of the overall poor prognosis, although this has recently been challenged. Our study aimed to explore... more
Trisomy 18 (T18) is a genetic disorder with cardiac lesions in up to 90% of patients. Cardiac surgery is not frequently offered because of the overall poor prognosis, although this has recently been challenged. Our study aimed to explore the practices and attitudes of Canadian pediatric cardiologists managing T18 patients. We administered a survey to pediatric cardiologists attending the Canadian Cardiovascular Congress, Canadian Pediatric Cardiology Association Business Meeting. There were 30 respondents. Most (67%) supported comfort care for affected patients with a heart lesion. None supported palliative surgery for those with complex heart lesions. Of 30 respondents, 16 (53%) counsel families prenatally, and none would present the option of a single ventricle surgical track for complex heart disease. In a hypothetical situation in which their own child was born with T18, 67% would choose comfort care with medical treatment of heart failure, and none would choose palliative surgery. Being a parent was associated with a higher likelihood of choosing termination (14 of 20 vs 6 of 9; P = 0.046) or comfort care (14 of 20 vs 6 of 9; P = 0.036). Qualitative data suggest support for comfort care, while recognizing the need for individualization and shared decision-making, within the context of institution-specific policies. Canadian pediatric cardiologists surveyed support comfort care and medical treatment but not surgical treatment for T18 patients with cardiac lesions. They place primacy on nonmaleficence, yet also recognize the emerging need for individualized shared decision-making in these cases.
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Dans le film quebecois de 2003 intitule La grande seduction [1][1], l’ile de Sainte-Marie-la-Mauderne au Quebec est en declin et bon nombre de ses residants sont sans emploi. Une entreprise offre aux citoyens de l’ile l’espoir d’un avenir... more
Dans le film quebecois de 2003 intitule La grande seduction [1][1], l’ile de Sainte-Marie-la-Mauderne au Quebec est en declin et bon nombre de ses residants sont sans emploi. Une entreprise offre aux citoyens de l’ile l’espoir d’un avenir plus prospere lorsqu’elle envisage de
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We argue in this chapter for an explicit value of place in health ethics. Psychologists have identified that some people feel what they term place attachment. We argue that ethicists should acknowledge that some people may feel connected... more
We argue in this chapter for an explicit value of place in health ethics. Psychologists have identified that some people feel what they term place attachment. We argue that ethicists should acknowledge that some people may feel connected to and identify with a particular place which has epistemological implications and implications for a person’s standpoint – as what we know is fundamentally influenced by where we come from. Place may also sometimes be used as a means to stereotype particular patients and their likely responses and values. In this chapter we argue for a value of place to give it the necessary weight and attention in ethical deliberations around the provision of health care at the micro, meso and macro levels of service delivery. We argue that the value of place is particularly relevant for rural residents as it may influence their health care choices, their experience of receiving care and their access to health services.
Dans le film quebecois de 2003 intitule La grande seduction [1][1], l’ile de Sainte-Marie-la-Mauderne au Quebec est en declin et bon nombre de ses residants sont sans emploi. Une entreprise offre aux citoyens de l’ile l’espoir d’un avenir... more
Dans le film quebecois de 2003 intitule La grande seduction [1][1], l’ile de Sainte-Marie-la-Mauderne au Quebec est en declin et bon nombre de ses residants sont sans emploi. Une entreprise offre aux citoyens de l’ile l’espoir d’un avenir plus prospere lorsqu’elle envisage de
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This paper examines the practice of covert medication administration from an organizational ethics perspective. This includes consideration of vulnerability and stigmatization, safety, and fairness (justice) in terms of the culture of... more
This paper examines the practice of covert medication administration from an organizational ethics perspective. This includes consideration of vulnerability and stigmatization, safety, and fairness (justice) in terms of the culture of health care organizations and the relevance of policies and processes in relation to covert medication administration. As much of the discussion about covert medication administration focuses on patients and health care providers, this analysis aims to help expand the analysis of this practice.
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6123 Background: The validity of informed consent in pediatric bone marrow transplantation (BMT) may be compromised by the complexity of information provided and the emotional duress under which it occurs. Anecdotal evidence suggests... more
6123 Background: The validity of informed consent in pediatric bone marrow transplantation (BMT) may be compromised by the complexity of information provided and the emotional duress under which it occurs. Anecdotal evidence suggests parents feel compelled to consent to BMT on behalf of their child. The purpose of this study was: 1. to determine if parents perceive there to be a real/actual choice when consenting to pediatric BMT, 2. to survey parental experience of the informed consent process, and 3. to determine if the informed consent process affects parental hope, anxiety, stress or guilt. METHODS An information package and informed consent document were mailed to 67 English-speaking parents of 34 children who underwent BMT. They were all prepared for transplant by one physician using a standardized template at the IWK Health Centre (Halifax, Nova Scotia, Canada) between 1998 and 2002. Semi-structured interviews were conducted by phone (13) or in person (7). Transcripts were analyzed for common themes by 2 independent reviewers. RESULTS Twenty parents (12 mothers and 8 fathers) of 12 children consented to participate in the study. This included five parents of three children who had died. Parental participants did not differ from eligible non-participants in indication for transplant, donor source, major complications, or death rates for their children. All subjects reported feeling they had no personal choice but to consent to BMT. Parents denied experiencing external pressure to consent. Subjects felt well prepared for potential side effects and complications; only 2 reported unexpected side effects. Parents did not report retrospectively doubting the informed consent process. All parents would consent to pediatric BMT if in the same position again. Parental hope, stress, guilt and anxiety were not reported to be affected by the informed consent process. CONCLUSIONS Parents do not perceive a personal choice when providing consent for pediatric BMT. Regardless of outcome, parents do not retrospectively question the quality of consent they provided for pediatric BMT nor do they feel that hope, stress, guilt or anxiety are affected by the consent process. No significant financial relationships to disclose.
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Rural women as a group are reported to face a “double disadvantage” due to their gender and rural place of residence. Gendered and place constructions of “good” rural women and the roles “good” women should play in rural communities are... more
Rural women as a group are reported to face a “double disadvantage” due to their gender and rural place of residence. Gendered and place constructions of “good” rural women and the roles “good” women should play in rural communities are shown to intersect with the values of place and community that characterize rural healthcare ethics. While gender and place stereotypes can have positive and negative implications for rural women and rural communities more generally, the intersections between these stereotypes and these values also may impact rural women and their access to health services across multiple dimensions, including availability, affordability, accessibility, acceptability, and accommodation. If the ability of rural women to access health services is influenced by gendered and place constructions of their role and the values of place and/or community, this is important when considering how health services should be designed and delivered.
Background The COVID-19 pandemic has had a significant impact on the health system worldwide. The organ and tissue donation and transplantation (OTDT) system is no exception and has had to face ethical challenges related to the pandemic,... more
Background The COVID-19 pandemic has had a significant impact on the health system worldwide. The organ and tissue donation and transplantation (OTDT) system is no exception and has had to face ethical challenges related to the pandemic, such as risks of infection and resource allocation. In this setting, many Canadian transplant programs halted their activities during the first wave of the pandemic. Method To inform future ethical guidelines related to the COVID-19 pandemic or other public health emergencies of international concern, we conducted a literature review to summarize the ethical issues. Results This literature review identified three categories of ethical challenges. The first one describes the general ethical issues and challenges reported by OTDT organizations and transplantation programs, such as risks of COVID-19 transmission and infection to transplant recipients and healthcare professionals during the transplant process, risk of patient waitlist mortality or furth...