Do published patient decision aids for end-of-life care address patients’ decision-making needs? A systematic review and critical appraisal

Abstract

Background: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice. Aims and design: This systematic review aimed to (a) identify the range of patients’ decision-making needs and (b) assess the extent to which patient decision aids address these needs. Data sources: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990–January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed ‘addressable’. Results: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 ‘addressable’ needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate. Conclusion: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.

Development and pilot testing of an electronic guide incorporating patient values and prognostic information in preparation for older people’s decision-making near the end of life.

“…Recent reviews of decision aids for EOL [8,9], however, revealed either a scarcity of tools for this context and or a lack of numeric prognostic information to assist patients and families in genuinely informed treatment decisions. More importantly, patients' personal values and preferences for non-medical aspects of end-of-life care were not generally incorporated [8,9].…”

“…Recent reviews of decision aids for EOL [8,9], however, revealed either a scarcity of tools for this context and or a lack of numeric prognostic information to assist patients and families in genuinely informed treatment decisions. More importantly, patients' personal values and preferences for non-medical aspects of end-of-life care were not generally incorporated [8,9]. Previous research on prognostic tools and preferences for disclosure [10,11], have identi ed several aspects illustrating the complexity of decisionmaking near the EOL: full or partial prognostic disclosure may be a clinician's duty but is not welcome by all patients and may best be delivered gradually over several encounters [12].…”

“…Decision-making to administer, withhold or withdraw life-saving treatment needs to be a step-by-step consultation process. Recent calls for taking advantage of the bene ts of digital information exchange to support elicitation of patient preference [17], supplement systematic evidence that current decision aids for end-of-life are still inadequate to meet patients' needs both in terms of information shared and individual engagement [9]. Hence, our aim was to design a resource that would assist clinician's (nurses or doctors) routine engagement in preliminary discussions with their patient and/or surrogate before formal advance care planning.…”

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

“…Such aids also assist health professionals to understand patient values and preferences. 12,13 Patient decision aids help patients make decisions about their health care by providing information about their options as well as allowing them to clarify and express their personal values and preferences about those options. 12,14 Shared decision-making and patient decision aids have been well received by kidney services in Denmark and in other countries.…”

How to Help Clients Make Effective Decisions About Romantic Relationships: A Systematic Review

“…The aim of structured communication tools was to improve care goals to assist EOL decision-making. Findings from 19 studies found that communication tools improved the documentation of goals-of-care discussions and ultimately decisions to withdraw life-sustaining treatments when compared to usual care.Similarly, a systematic review using 22 studies byPhillips et al (2019) aimed to identify patients' decision-making needs and assess the extent to which decision aids addressed these needs. To assess the effectiveness of current decision aids, the International Patient Decision Aid Standards (IPDAS) was used.…”