Article type
Year
Abstract
Objective: To develop a 'reviewable' question for an intervention in a complex environment.
Methods: Following identification of the necessity for a review of interventions to promote communication with adults for do-not-resuscitate orders, stimulated by journal debate after editorial by Ebrahim, British Medical Journal, 2000, we undertook a series of iterative searches of Medline, 1966 - 2001, expanding from resuscitation orders and trial designs, to include resuscitation decisions or policy, advance directives, living wills, right to die, passive euthanasia, informed consent, and all study designs. Several team meetings (over 6 months) were held to resolve a consensus approach to a diverse range of research 'challenges', prior to the detailed identification of participants, interventions and outcomes, and prior to the submission of the title proposal. These challenges included: the social, clinical, contextual and temporal complexity of decision-making scenarios; implications of evidence concerning socially discriminating decisions about who should be resuscitated; intertwining of do-not-resuscitate orders and advance directives; potentially conflicting aims of promoters of advance directives (for example, reducing hospital stays or enhancing individual autonomy); diversity of interventions that could be classed as communication strategies; multiplicity of measured outcomes; conflicting/changing views of resuscitation study participants regarding best outcome, and adequacy of search strategy for non-trial designs.
Results: Team decisions taken are:
* to split, and conduct two linked reviews on (a) do-not-resuscitate orders and (b) advance directives. Title proposals for submission now titled: 'Interventions to promote communication for advance directives/do-not-resuscitate orders for adults';
* that outcomes for advance directives to include two categories: a) process of being informed, and: b) effect of being informed. Principal outcome to relate to individual adult, but secondary outcomes sought on family/carer, health professionals, and system for both 2a and 2b;
* that review on do-not-resuscitate orders to include a systematic search for, and narrative summary of, findings of observational studies on end-of-life decision-making and care, linked to Background of review, and used to (a) identify social characteristics, views and patterns of communication of people (prospective/past patient and/or family, health professionals); (b) document the assumptions underpinning interventions to promote communication on advance directives and resuscitation orders; and c) inform discussion of studies in review;
* to identify consumer organisations who have undertaken research with members around decision-making at end-of-life, for clarification of key outcomes for patients and family members;
* consult local clinicians for their input to designation of outcomes for patients and family members;
* to develop a glossary of study designs, for all designs, with examples where possible from Consumers and Communication Review Group Trials Register or from Medline.
Conclusions: Reviews of interventions that are applied in complex environments where social views closely intersect with clinical decision-making are reviews that require substantial investment of time prior to title development. Additional resources and guides to aid reviewers had to be developed before review could commence. The balance between broadening the review scope and completing the review is a mix of idealism and pragmatism.
Methods: Following identification of the necessity for a review of interventions to promote communication with adults for do-not-resuscitate orders, stimulated by journal debate after editorial by Ebrahim, British Medical Journal, 2000, we undertook a series of iterative searches of Medline, 1966 - 2001, expanding from resuscitation orders and trial designs, to include resuscitation decisions or policy, advance directives, living wills, right to die, passive euthanasia, informed consent, and all study designs. Several team meetings (over 6 months) were held to resolve a consensus approach to a diverse range of research 'challenges', prior to the detailed identification of participants, interventions and outcomes, and prior to the submission of the title proposal. These challenges included: the social, clinical, contextual and temporal complexity of decision-making scenarios; implications of evidence concerning socially discriminating decisions about who should be resuscitated; intertwining of do-not-resuscitate orders and advance directives; potentially conflicting aims of promoters of advance directives (for example, reducing hospital stays or enhancing individual autonomy); diversity of interventions that could be classed as communication strategies; multiplicity of measured outcomes; conflicting/changing views of resuscitation study participants regarding best outcome, and adequacy of search strategy for non-trial designs.
Results: Team decisions taken are:
* to split, and conduct two linked reviews on (a) do-not-resuscitate orders and (b) advance directives. Title proposals for submission now titled: 'Interventions to promote communication for advance directives/do-not-resuscitate orders for adults';
* that outcomes for advance directives to include two categories: a) process of being informed, and: b) effect of being informed. Principal outcome to relate to individual adult, but secondary outcomes sought on family/carer, health professionals, and system for both 2a and 2b;
* that review on do-not-resuscitate orders to include a systematic search for, and narrative summary of, findings of observational studies on end-of-life decision-making and care, linked to Background of review, and used to (a) identify social characteristics, views and patterns of communication of people (prospective/past patient and/or family, health professionals); (b) document the assumptions underpinning interventions to promote communication on advance directives and resuscitation orders; and c) inform discussion of studies in review;
* to identify consumer organisations who have undertaken research with members around decision-making at end-of-life, for clarification of key outcomes for patients and family members;
* consult local clinicians for their input to designation of outcomes for patients and family members;
* to develop a glossary of study designs, for all designs, with examples where possible from Consumers and Communication Review Group Trials Register or from Medline.
Conclusions: Reviews of interventions that are applied in complex environments where social views closely intersect with clinical decision-making are reviews that require substantial investment of time prior to title development. Additional resources and guides to aid reviewers had to be developed before review could commence. The balance between broadening the review scope and completing the review is a mix of idealism and pragmatism.