Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis

Hannes Knüppel,Marcel Mertz,Gerald Neitzke,Martina Schmidhuber,Daniel Strech,Carol Brayne

doi:10.1371/journal.pmed.1001498

Hannes Knüppel, Marcel Mertz + Show 4 more

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https://doi.org/10.1371/journal.pmed.1001498

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Abstract

BackgroundClinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care.Methods and FindingsTo identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained.ConclusionsEthical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors' Summary

Highlights

Clinical practice guidelines (CPGs) are meant to improve standards of clinical competence and professionalism by referring explicitly to evidence-based information on benefits and harms [1]. Their development increasingly includes measures to strengthen their validity and accountability: patient participation [2], explicit procedures to grade the strength of recommendations [3], and the requirement to disclose and manage conflicts of interest [4]. While all these developments in guideline methodology are laudable, from an ethical perspective, CPG development manuals worldwide still fail to address how to include diseasespecific ethical issues (DSEIs): a search of leading CPG development manuals for the term ‘‘ethics’’ or ‘‘ethical’’ does not yield any information about how to identify and address clinical ethical situations that are relevant to the management of specific diseases [1,5,6,7,8]
How does a DSEI arise? Widely shared frameworks for medical professionalism and common approaches to morality in bioethics are all based on a set of prima facie binding ethical principles: respect for patient autonomy, beneficence, nonmaleficence, and justice [9,10,11]
We restricted our analysis to national, general CPGs on dementia care and did not analyze guidelines that address a specific aspect of dementia care

Summary

Introduction

Clinical practice guidelines (CPGs) are meant to improve standards of clinical competence and professionalism by referring explicitly to evidence-based information on benefits and harms [1]. Their development increasingly includes measures to strengthen their validity and accountability: patient participation [2], explicit procedures to grade the strength of recommendations [3], and the requirement to disclose and manage conflicts of interest [4]. CPG development manuals do not address how to include ethical issues in CPGs. A health-care professional is ethical if he/she behaves in accordance with the accepted principles of right and wrong that govern the medical profession. Thematic text analysis uses a framework for the assessment of qualitative data (information that is word-based rather than number-based) that involves pinpointing, examining, and recording patterns (themes) among the available data

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