A Statement of Principles for Health Care Journalists

Many journalism organizations have published codes of ethics in recent years. The Association of Newspaper Editors, for example, lists 47 different codes on its website. But an organization of health care journalists felt that none of those codes addressed the unique challenges of covering complex health care topics. The Association of Health Care Journalists (AHCJ) is an independent, non-profit organization dedicated to advancing public understanding of health care issues. Its mission is to improve the quality, accuracy and visibility of health care reporting, writing and editing. AHCJ has written a statement of principles for its 750 members. In it, AHCJ states some of the unique challenges faced by journalists covering health care, and offers suggestions on how to face those challenges. Bioethicists are invited to comment on the statement, and to help generate continued discussion of the issues addressed therein.     

Principles and Problems in the Assessment of Quality of Life in Health Care

A remarkable surge in efforts to assess the quality of life of patients has occurred in recent years in medical research. Philosophical discussions of these developments have focused, on the one hand, on epistemological reservations about the plausibility of measuring quality of life and, on the other hand, on moral and ethical qualms about the meaning of life conveyed in such assessments. Whilst providing an important note of caution, such critiques fail to recognise two basic principles of quality of life in medical research. Firstly it is intended to provide understanding about groups and categories of patients rather than individuals. Secondly the purpose of such research is to produce generalisations about the relative costs and benefits of specific health care interventions rather than absolute judgements regarding the quality of life of patients per se. Selecting a good quality of life measure for a clinical trial requires balancing criteria such as validity with practical feasibility. Such measures will play an increasingly central role in providing research evidence to improve health care.     

Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Clinical practice guidelines have been critiqued for prescribing standardized care that neglects patients’ personal circumstances and knowledge in health care decisions. To make care more patient centred, standard-setters are urged to involve patients and the public in guideline development and use. Despite widespread principled support for such Patient and Public Involvement (PPI), the underlying principles guiding PPI in standardization of care are mired on confusion and contradiction. Based on the PPI literature in general, and informed by empirical research on guideline development, it is possible to identify three rationales that justify PPI in clinical standard setting. Each rationale gives rise to a conceptual model which outlines a distinct purpose of participation, who is to be included, and what they are expected to contribute. The Consumer Choice model aims to involve autonomous consumers to personalize clinical care. The Democratic Voice model aims for health care recommendations to better reflect collective values of citizens. The Lay Expertise model aims to re-contextualize universal evidence by including experiential patient knowledge. However, these models can and should not function as ‘Gold Standards’ to be consistently followed in practice. First, the models rely on two distinct types of representation, resulting in contradictory notions of how to be a good representative. Second, imposing models on practice requires a top-down control that is practically and politically problematic. Not only is control difficult to achieve, it may compromise the participatory ideal of participants co-determine practice, and may result in excluding the values and views of ‘real’ patients and public entirely.     

Moving from Principles to Practice: Recommended Policy Changes to Promote Family-Centered Care

This paper emphasizes the value of family-centered care. Discussion highlights family-centered philosophies (e.g., Systems of Care [SOCs]) and practice models (i.e., wraparound) and identifies discrepancies between conceptualizations and actual practice. Data from multiple sources detail issues in fidelity to family-centered values and needs and risks experienced by siblings of children with severe emotional disturbance and their caregivers. This discussion provides a springboard for policy recommendations to strengthen family support programming and enhance family-centered care, from modifying funding streams such that systems extend their reach beyond children with full-blown, diagnosable problems (those meeting standards of "medical necessity), to supporting prevention and early intervention initiatives that address families as targets for intervention. Recommendations include ensuring that communities with SOC funding address the needs of families; broadening Medicaid rules and definitions; expanding the range of reimbursable activities and services; and increasing funding for evaluating family-centered care models and family support programming.     

Abstract

Although Aristotle did not mention it, integrity can be understood in an Aristotelian framework. Seeing it in these terms will show that it is an executive virtue which concerns the existential well being of an agent. This analysis is not offered as an exegesis of Aristotle's text, but as an attempt to use an Aristotelian framework to understand a virtue deemed important today. This account will have the benefit of solving some problems relating to motivational internalism and, as such, will contribute to that recent current of thought which has been highlighting the importance of virtue thinking in moral theory. I will distinguish moral judgement from decision and show that moral judgement is dependent upon virtue more strongly than it is upon impartial rationality. I will suggest that integrity is the virtue to which moral judgement gives expression and is the virtue which links judgement to decision so as to overcome akrasia.