Christy Simpson

Hope, disclosure, and control in the neonatal intensive care unit.

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 childs 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.

Validity and consequence of informed consent in pediatric bone marrow transplantation: The parental experience.

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.

Getting Engaged: Exploring Professionalization in Canada

Whether from a practice, academic and/or personal perspective, the topic of professionalization tends to raise many questions, sometimes leading to vigorous debate, for those engaged in health care ethics. As part of exploring professionalization from a Canadian perspective, the papers in this issue tackle some of these questions, offering up reflections for the reader’s consideration. Other papers address conceptual and practical approaches for further work in this area, including the possible development of practice standards, while still others provide relevant historical and contextual (i.e., Canadian) details. The papers range from being more descriptive and formal in style to more conversational and personal, to a translated (French to English) talk. These different ‘‘voices’’, I believe, add to the appreciation of the personal and practice aspects of what we do in health care ethics. Indeed, a quick scan of the paper titles in this issue indicates that there are many ‘‘threads’’ to follow related to exploring professionalization. In our discussions about professionalization and in preparation for a national symposium (see Frolic and Practicing Healthcare Ethicists Exploring Professionalization 2012 for a full description), the members of Practicing Healthcare Ethicists Exploring Professionalization (PHEEP) could not help but appreciate that we were all drawn to this work for sometimes distinct, sometimes overlapping, reasons. These reasons fundamentally shaped how we wanted to approach considerations of professionalization, contributing to interest in a number of related avenues of inquiry about ‘‘what we do’’. Whether we are influenced by our experiences in the practice of healthcare ethics or our education and training, each of us could identify important projects to explore. It was also recognized (which comes as no surprise) that there are several descriptors and references used to denote those who are in healthcare ethics

Deliberative Engagement: An Inclusive Methodology for Exploring Professionalization

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.

Loyalty and hope: keys to parenting in the NICU.

When a newborn is admitted to a neonatal intensive care unit the parents may experience a variety of emotions, including a heightened sense of loyalty to their child. While health care providers are working to meet the medical needs of their patients, parents need to find ways to fulfill this sense of loyalty and to express it via hope. Through sharing the experience of having a child in the NICU, I examine hope and loyalty as critical features of parents’ NICU experience, explaining why these emotions need to be acknowledged and encouraged by health care professionals.

Ethical Questions in the Pursuit of Genetic Information

Breast cancer is a disease that will directly affect more than 10% of all women (and a small percentage of men) in North America. All who realize they have this disease will have their lives disrupted; most will undergo surgery to remove the offending cells and surrounding tissue. Many will also undergo radiation, chemotherapy, and/or long term prophylactic drug regimens; all will be advised to seek ongoing medical surveillance of their breasts and related tissues for the rest of their lives. An unacceptably high number of these people will die from this disease or from complications associated with it. The lives of all those who are close to people who experience breast cancer will be dramatically changed and their own sense of safety will be noticeably reduced. And most women, including many of the more than 85% of the North American population which will never develop breast cancer, will live their lives in fear of developing this disease; many will come to depend upon regular medical reassurances that they are (for now) cancer free.

Mapping Our Practice? Some Conceptual “Bumps” for us to Consider

There are several important conceptual issues and questions about the practice of healthcare ethics that can, and should, inform the development of any practice standards. This paper provides a relatively short overview of seven of these issues, with the invitation for further critical reflection and examination of their relevance to and implications for practice standards. The seven issues described include: diversity (from the perspective of training and experience); moral expertise and authority/influence; being an insider or outsider; flexibility and adaptability (for local contexts of practice); the relative weighting of procedural and normative aspects of ethics practice; making mistakes or errors; and conflicts of interest in practice.

Deliberative curriculum inquiry for integration in an MD curriculum: Dalhousie University's curriculum renewal process.

Background: Dalhousie Universitys MD Programme faced a one-year timeline for renewal of its undergraduate curriculum. Aim: Key goals were renewed faculty engagement for ongoing quality improvement and increased collaboration across disciplines for an integrated curriculum, with the goal of preparing physicians for practice in the twenty-first century. Methods: We engaged approximately 600 faculty members, students, staff and stakeholders external to the faculty of medicine in a process described by Harris (1993) as ‘deliberative curriculum inquiry’. Temporally overlapping and networked intraprofessional and interprofessional teams developed programme outcomes, completed environment scans of emerging content and best practices, and designed curricular units. Results: The resulting curriculum is the product of new collaborations among faculty and exemplifies distinct forms of integration. Innovations include content and cases shared by concurrent units, foundations courses at the beginning of each year and integrative experiences at the end, and an interprofessional community health mentors programme. Conclusion: The use of deliberative inquiry for pre-med curriculum renewal on a one-year time frame is feasible, in part through the use of technology. Ongoing structures for integration remain challenging. Although faculty collaboration fosters integration, a learner-centred lens must guide its design.

The ethics of disclosure of patient safety incidents.

The purpose of this article is to highlight some of the areas of progress and concern related to the disclosure of patient safety incidents, to promote the use of healthcare leadership codes and organizational ethics frameworks when designing strategies to address disclosure, to highlight some of the leadership questions pertaining to disclosure, and to identify available tools and resources. It is hoped that this article will inspiremembers of the Canadian College of Health Leaders to continue discussions on this important aspect of healthcare leadership as well as contribute to ongoing dialogue.

Rethinking Rural Health Ethics

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.