Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
This qualitative, observational research study explored treatment encounters between patients with disorders of consciousness, rehabilitation practitioners, and family to understand how treatment decisions occurred. The data showed shared decision making (SDM) occurring as a process, meaning that not all five principles of SDM occur in one clinical encounter but rather unfold across multiple clinical encounters. We delineate differences in SDM between rehabilitation and the medical model.
Primary Author and Speaker: Jennifer Weaver
Contributing Authors: Trudy Mallinson, Leslie Davidson, Christina Papadimitriou, Ann Guernon, and Philip van der Wees
PURPOSE: The principles of shared decision-making (SDM) have been developed through study of physician-patient encounters and include: 1) drawing attention to treatment options, 2) supporting the patient to be informed, 3) checking the understanding of treatment options, 4) eliciting preferences, and 5) integrating the patient's preferences. These principles are seen as discrete and sequential, which may not align with rehabilitation where multiple encounters occur in one week. SDM is especially challenging when the person with disability cannot speak for themselves. This exploratory study describes whether and how family members and rehabilitation practitioners share decisions around treatment planning when the patient is in a state of disordered consciousness (DoC) following a brain injury (BI). The research question is: ‘How do family members (FM) and rehabilitation practitioners (RP) make treatment decisions together when the patient is in DoC following a BI?'
DESIGN: Ethnographic approach examined behaviors of caregivers, patients, and rehabilitation practitioners during acute care clinical encounters. Recruitment occurred at an urban, level I trauma hospital. FMs and patient participants were eligible if they were an adult (>18 years) and the patient was in DoC following a BI. RPs were eligible if they were treating the consented patient.
METHOD: Observations of fourteen clinical encounters that included two FMs, two patients, and seven RPs. Each encounter was audio recorded and fieldnotes were recorded by the first author. Audio recordings were transcribed and the fieldnotes were embedded into the transcripts. Data were analyzed in three stages. First, an inductive thematic analysis occurred by two authors to allow for open coding and emergent ideas. Second, the transcripts were reviewed for instances when treatment decisions were present. Third, the treatment decisions were coded deductively to established concepts of SDM, while remaining open to the possibility of an emergent concept specific to the field of rehabilitation. Triangulation of data occurred through clinical observations and debriefing interviews, over multiple observations with multiple RPs.
RESULTS: In the context of rehabilitation, SDM rarely occurs in the context of a simple dichotomous decision; rather multiple decisions occur in one encounter and the types of decisions change throughout the patient's episode of care. An important distinction for SDM in rehabilitation contexts is that SDM principles unfold across multiple encounters. For example, elicitation of patient preferences occurs more often during initial treatment encounters while integration of patient preferences occurs in later treatment sessions. Data also showed SDM occurring in two ways. Integrative SDM, which occurs when family are included in the treatment session and their contributions provided new information for in-the-moment decision-making. Declarative SDM occurs when the therapist elicits treatment preference from the family and then executes. Both types of SDM focus on the decision being a partnership with the family. Decisions were also observed that did not reflect partnership but rather one stakeholder determining the decision without deliberation.
CONCLUSION: The data demonstrate that SDM occurs as an iterative process. We delineated two types of SDM that occur in partnership between FMs and RPs: integrative and declarative.
IMPACT STATEMENT: Occupational Therapy values full inclusion of the patient with a vision of being client-centered. This is the first study to describe SDM in rehabilitation settings between FMs and RPs, including occupational therapists, when patients are unconscious. Partnership appears as a hallmark of SDM in rehabilitation of persons in DoC.
References
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Elwyn, G., Edwards, A., & Thompson, R. (2016). Shared decision making in health care: achieving evidence-based patient choice (Third ed.). New York, NY: Oxford University Press.
