This article describes a new model for ethics support for Capital Health (a health region in Nova... 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.
International library of ethics, law, and the new medicine, 2017
This chapter undertakes an examination of the ways in which the deficit perspective has pervaded ... 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.
Decision-making about health technologies is complex. An aspect that is not often addressed is th... 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.
Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) a... 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.
The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Th... 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.
Early on in the development of Practicing Healthcare Ethicists Exploring Professionalization (PHE... 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.
The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (... 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.
The History and Bioethics of Medical Education, 2021
The authors believe there is a need to challenge the urban-based ethical norms and biases built i... 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
This article describes a new model for ethics support for Capital Health (a health region in Nova... 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.
International library of ethics, law, and the new medicine, 2017
This chapter undertakes an examination of the ways in which the deficit perspective has pervaded ... 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.
Decision-making about health technologies is complex. An aspect that is not often addressed is th... 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.
Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) a... 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.
The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Th... 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.
Early on in the development of Practicing Healthcare Ethicists Exploring Professionalization (PHE... 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.
The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (... 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.
The History and Bioethics of Medical Education, 2021
The authors believe there is a need to challenge the urban-based ethical norms and biases built i... 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
This is an "open peer commentary" on a paper in the same issue: Morain et al.'s "When Is It Ethic... more 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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