Deirdre DeJean

Decision tools for life support: A review and policy analysis

Objective:To identify, describe, and compare published documents intended to guide decisions about the administration, withholding, or withdrawal of life support in critical care. Design:Review article. Setting and Sources:Publicly available, English-language guidelines or decision tools for life support, identified through systematic literature search. Measurements and Main Results:Forty-nine documents were included and coded for authorship, source, development methodology, format, and positions taken on 12 common life-support issues. Sources were independent academics (n = 21, 43%), professional organizations (n = 19, 44%), and provider organizations. Eighteen documents (37%) described no development method. Twenty-three (47%) were produced collectively (e.g., by committees or consensus conference), 7 (14%) mentioned a literature review, and 2 (4%) were based upon the authors professional experience. Tools differed in format and focus; we characterize three types as decision schemas (involving clinical practice algorithms; n = 7, 14%), decision guides (reviewing legal or professional positions; n = 29, 59%), and decision counsels (more discursive and focusing typically on ethical issues; n = 13, 27%). Tools addressed 12 common life-support issues: advance directives (67%), resource considerations (51%), ICU discharge criteria (27%), ICU admission criteria (16%), whether withholding differs from withdrawing life support (59%), whether nutrition and hydration decisions are different from decisions about other types of life support (61%), euthanasia (49%), double effect (47%), brain death (35%), special considerations for patients in a persistent vegetative state (51%), potential organ donors (12%), and pregnant patients (10%). Positions on these key life-support issues varied. Conclusions:Published tools for guiding life-support decisions vary widely in their genesis, authorship, format, focus, and practicality. They also differ in their attention to, and positions on, key life-support dilemmas. Future research on decision tools should focus on how users interpret and apply the messages in these tools and their impacts on practice, quality of care, participant experiences, and outcomes.

Ethics in Canadian health technology assessment: A descriptive review

BACKGROUND Despite the mandate to examine the medical, ethical, and economic implications of the development and use of health technology, health technology assessment (HTA) reports often emphasize the epidemiologic and economic aspects, and omit ethical considerations. This study examines both whether and how ethical issues are incorporated into HTA. OBJECTIVES We aim to (i) review a set of Canadian HTA reports for ethics content, (ii) describe the strategies used to incorporate ethically relevant information into HTA, and (iii) determine the presence of implicit ethical issues in a sample of HTA reports. METHODS Descriptive and qualitative content analysis of 608 HTA reports produced by six Canadian HTA agencies from January 1997 to December 2006. RESULTS We found that (i) a minority (17 percent) of Canadian HTA reports addressed ethical issues, (ii) secondary research predominates while primary analysis is rare, (iii) implicit ethical issues are present in HTA reports that do not purport to address ethics. CONCLUSIONS Canadian HTA reports rarely explicitly, and then only superficially, address ethics, though implicit ethical issues abound.

Ethics frameworks in Canadian health policies: Foundation, scaffolding, or window dressing?

Health policy documents increasingly feature ethics frameworks that outline key guiding principles. It is unclear whether such frameworks function as scaffolding for creating policy, foundations for responding to policy, or mere aesthetic frames to make policies appear ethical. This study investigates the nature and quality of ethics frameworks in Canadian health documents. We reviewed the ethics frameworks of 24 strategic health policy documents published from 1998 to 2005 by Canadian government agencies. We found that frameworks typically appear as a list of principles or values. These elements vary widely across the terminal, procedural, and substantive values of conventional ethics, and many are better characterized as goals than as ethics. No two ethics frameworks matched, despite common topic areas and presumably broadly shared values within the Canadian health system. Elements shared by at least half of the documents include: access, accountability, autonomy, client-centredness, collaboration, efficiency, equity, and evidence. However, common elements are interpreted quite differently. The genesis of the framework and its elements is seldom described. Only one third of the documents relate specific ethical elements to specific policies. In conclusion, we draw on the clinical guidelines literature to propose some features of a robust, coherent and meaningful ethics framework.

Life support decision making in critical care: Identifying and appraising the qualitative research evidence.

Objective: The objective of this study is to identify and appraise qualitative research evidence on the experience of making life-support decisions in critical care. Data Sources: In six databases and supplementary sources, we sought original research published from January 1990 through June 2008 reporting qualitative empirical studies of the experience of life-support decision making in critical care settings. Study Selection: Fifty-three journal articles and monographs were included. Of these, 25 reported prospective studies and 28 reported retrospective studies. Data Extraction: We abstracted methodologic characteristics relevant to the basic critical appraisal of qualitative research (prospective data collection, ethics approval, purposive sampling, iterative data collection and analysis, and any method to corroborate findings). Data Synthesis: Qualitative research traditions represented include grounded theory (n = 15, 28%), ethnography or naturalistic methods (n = 15, 28%), phenomenology (n = 9, 17%), and other or unspecified approaches (n = 14, 26%). All 53 documents describe the research setting; 97% indicate purposive sampling of participants. Studies vary in their capture of multidisciplinary clinician and family perspectives. Thirty-one (58%) report research ethics board review. Only 49% report iterative data collection and analysis, and eight documents (15%) describe an analytically driven stopping point for data collection. Thirty-two documents (60%) indicated a method for corroborating findings. Conclusions: Qualitative evidence often appears outside of clinical journals, with most research from the United States. Prospective, observation-based studies follow life-support decision making directly. These involve a variety of participants and yield important insights into interactions, communication, and dynamics. Retrospective, interview-based studies lack this direct engagement, but focus on the recollections of fewer types of participants (particularly patients and physicians), and typically address specific issues (communication and stress). Both designs can provide useful reflections for improving care. Given the diversity of qualitative research in critical care, room for improvement exists regarding both the quality and transparency of reported methodology.

PUBLIC AND PATIENT INVOLVEMENT IN HEALTH TECHNOLOGY ASSESSMENT: A FRAMEWORK FOR ACTION

OBJECTIVE As health technology assessment (HTA) organizations in Canada and around the world seek to involve the public and patients in their activities, frameworks to guide decisions about whom to involve, through which mechanisms, and at what stages of the HTA process have been lacking. The aim of this study was to describe the development and outputs of a comprehensive framework for involving the public and patients in a government agencys HTA process. METHODS The framework was informed by a synthesis of international practice and published literature, a dialogue with local, national and international stakeholders, and the deliberations of a government agencys public engagement subcommittee in Ontario, Canada. RESULTS The practice and literature synthesis failed to identify a single, optimal approach to involving the public and patients in HTA. Choice of methods should be considered in the context of each HTA stage, goals for incorporating societal and/or patient perspectives into the process, and relevant societal and/or patient values at stake. The resulting framework is structured around four actionable elements: (i) guiding principles and goals for public and patient involvement (PPI) in HTA, (ii) the establishment of a common language to support PPI efforts, (iii) a flexible array of PPI approaches, and (iv) on-going evaluation of PPI to inform adjustments over time. CONCLUSIONS A public and patient involvement framework has been developed for implementation in a government agencys HTA process. Core elements of this framework may apply to other organizations responsible for HTA and health system quality improvement.

Finding Qualitative Research Evidence for Health Technology Assessment

Health technology assessment (HTA) agencies increasingly use reviews of qualitative research as evidence for evaluating social, experiential, and ethical aspects of health technologies. We systematically searched three bibliographic databases (MEDLINE, CINAHL, and Social Science Citation Index [SSCI]) using published search filters or “hedges” and our hybrid filter to identify qualitative research studies pertaining to chronic obstructive pulmonary disease and early breast cancer. The search filters were compared in terms of sensitivity, specificity, and precision. Our screening by title and abstract revealed that qualitative research constituted only slightly more than 1% of all published research on each health topic. The performance of the published search filters varied greatly across topics and databases. Compared with existing search filters, our hybrid filter demonstrated a consistently high sensitivity across databases and topics, and minimized the resource-intensive process of sifting through false positives. We identify opportunities for qualitative health researchers to improve the uptake of qualitative research into evidence-informed policy making.

Fair reckoning: a qualitative investigation of responses to an economic health resource allocation survey.

Objective  To investigate how participants in an economic resource allocation survey construct notions of fairness.

Pregnant women's perceptions of gestational weight gain: a systematic review and meta‐synthesis of qualitative research

Excess gestational weight gain has numerous negative health outcomes for women and children, including high blood pressure, diabetes, and cesarean section (maternal) and high birth weight, trauma at birth, and asphyxia (infants). Excess weight gain in pregnancy is associated with a higher risk of long-term obesity in both mothers and children. Despite a concerted public health effort, the proportion of pregnant women gaining weight in excess of national guidelines continues to increase. To understand this phenomenon and offer suggestions for improving interventions, we conducted a systematic review of qualitative research on pregnant womens perceptions and experiences of weight gain in pregnancy. We used the methodology of qualitative meta-synthesis to analyze 42 empirical qualitative research studies conducted in high-income countries and published between 2005 and 2015. With this synthesis, we provide an account of the underlying factors and circumstances (barriers, facilitators, and motivators) that pregnant women identify as important for appropriate weight gain. We also offer a description of the strategies identified by pregnant women as acceptable and appropriate ways to promote healthy weight gain. Through our integrative analysis, we identify womens common perception on the struggle to enact health behaviors and physical, social, and environmental factors outside of their control. Effective and sensitive interventions to encourage healthy weight gain in pregnancy must consider the social environment in which decisions about weight take place.

Diet modification challenges faced by marginalized and nonmarginalized adults with type 2 diabetes: A systematic review and qualitative meta-synthesis

Objectives Diet modification is an important part of the prevention and treatment of type 2 diabetes, but sustained dietary change remains elusive for many individuals. This paper describes and interprets the barriers to diet modification from the perspective of people with type 2 diabetes, paying particular attention to the experiences of people who experience social marginalization. Methods A systematic review of primary, empirical qualitative research was performed, capturing 120 relevant studies published between 2002 and 2015. Qualitative meta-synthesis was used to provide an integrative analysis of this knowledge. Results Due to the central role of food in social life, dietary change affects all aspects of a person’s life, and barriers related to self-discipline, emotions, family and social support, social significance of food, and knowledge were identified. These barriers are inter-linked and overlapping. Social marginalization magnifies barriers; people who face social marginalization are trying to make the same changes as other people with diabetes with fewer socio-material resources in the face of greater challenges. Discussion A social-ecological model of behavior supports our findings of challenges at all levels, and highlights the need for interventions and counseling strategies that address the social and environmental factors that shape and sustain dietary change.

Evaluation of Patient Involvement in HTA

This book outlines a range of goals of patient involvement in HTA and expected benefits. However, the benefits remain hypothetical in the absence of formal evaluation of patient involvement in HTA. This chapter aims to provide an overview of current practices regarding the evaluation of patient involvement in HTA. The first part posits the need for evaluating patient involvement in HTA and presents some examples of how it could impact HTA. Then, the second part presents current evidence on the impact of patient involvement in fields related to HTA, such as clinical research and clinical guideline development. The third part focuses on some of the main gaps identified in the literature, and the fourth part highlights challenges related to evaluating patient involvement in HTA, including conceptual, methodological and practical aspects. The chapter concludes by proposing directions for supporting patient involvement practices in HTA and providing guidance to ensure rigorous evaluations of the impact of patient involvement in HTA that are adapted to each context.