Assessing Decision-Making Capacity in Patients with Acquired Brain Injury: A Toolkit of Ethical Guidelines

Research Objectives To improve provider knowledge of the construct of capacity, clarify existing capacity assessment institutional policies, and provide recommendations for conducting capacity assessment. Design A semi-structured interview script and Likert scale survey were developed to investigate stakeholder knowledge and perspectives on decision-making capacity. Constant Comparative Method Analysis was conducted to identify themes across and within stakeholder groups. Setting Inpatient Rehabilitation Hospital. Participants Multidisciplinary stakeholder representatives, including physicians, investigators, hospital administrators, legal counsel, psychologists, case managers, nurses, social workers, caregivers, and patients (N=21), selected by the investigators using purposive sampling. Interventions Not Applicable. Main Outcome Measures Four thematic areas (i.e. clinical, research, ethical, legal) identified through application of a data reduction procedure. Results Ethically, capacity assessment promotes patients’ autonomy, dignity, best interests, well-being, values, preferences and goals of care, and allows patients to maintain the right to refuse treatment. Clinically, stakeholders reported that capacity assessment ensures that patient preferences are considered in the plan of care and that unwanted procedures and treatments are prevented. Legally, capacity assessment ensures there is valid informed consent. For research, capacity assessment helps establish a point person to make decisions and allows for decisions to be made regarding patient participation in research studies. Providers identified challenges including lack of time, lack of familiarity with legal statutes, and uncertainty about the multidimensionality of capacity. Investigators identified challenges including tracking proxy/guardian status long-term and lack of consensus between clinical and research teams. Surrogate decision makers identified challenges including lack of direct contact with patients, family discord, and negative impact of personal emotions. For healthcare systems, challenges included incomplete medical records, high staff turnover, and team miscommunication. A provider toolkit for capacity assessment and monitoring was developed based on challenges identified by stakeholder groups and recommendations were proposed for refining institutional policy and procedures. Conclusions While stakeholder groups appear to have a general understanding of the concept of capacity, familiarity with specific procedures and regulations is limited. Institutions should provide supportive resources for providers directly involved in assessment of decision-making capacity. Author(s) Disclosures No Disclosures. To improve provider knowledge of the construct of capacity, clarify existing capacity assessment institutional policies, and provide recommendations for conducting capacity assessment. A semi-structured interview script and Likert scale survey were developed to investigate stakeholder knowledge and perspectives on decision-making capacity. Constant Comparative Method Analysis was conducted to identify themes across and within stakeholder groups. Inpatient Rehabilitation Hospital. Multidisciplinary stakeholder representatives, including physicians, investigators, hospital administrators, legal counsel, psychologists, case managers, nurses, social workers, caregivers, and patients (N=21), selected by the investigators using purposive sampling. Not Applicable. Four thematic areas (i.e. clinical, research, ethical, legal) identified through application of a data reduction procedure. Ethically, capacity assessment promotes patients’ autonomy, dignity, best interests, well-being, values, preferences and goals of care, and allows patients to maintain the right to refuse treatment. Clinically, stakeholders reported that capacity assessment ensures that patient preferences are considered in the plan of care and that unwanted procedures and treatments are prevented. Legally, capacity assessment ensures there is valid informed consent. For research, capacity assessment helps establish a point person to make decisions and allows for decisions to be made regarding patient participation in research studies. Providers identified challenges including lack of time, lack of familiarity with legal statutes, and uncertainty about the multidimensionality of capacity. Investigators identified challenges including tracking proxy/guardian status long-term and lack of consensus between clinical and research teams. Surrogate decision makers identified challenges including lack of direct contact with patients, family discord, and negative impact of personal emotions. For healthcare systems, challenges included incomplete medical records, high staff turnover, and team miscommunication. A provider toolkit for capacity assessment and monitoring was developed based on challenges identified by stakeholder groups and recommendations were proposed for refining institutional policy and procedures. While stakeholder groups appear to have a general understanding of the concept of capacity, familiarity with specific procedures and regulations is limited. Institutions should provide supportive resources for providers directly involved in assessment of decision-making capacity.