PROMOTING PATIENTS’ AUTONOMY BY MAKING SPACES FOR THE FAMILY’S VOICE IN MEDICAL DECISION-MAKING

Background: Participants will learn to apply the following skills: 1. Honouring the individual patient’s choice of how their own autonomy should be viewed, and incorporating this into practice 2. Cultural formulation: a brief set of questions making up a “mini-ethnography” to help clinicians assess “what matters most” to patients who need decisional support from trusted others 3. Distinguishing between decision support and coercion (by family members): applying an expanded understanding of autonomous decision-making to help clinicians identify coercive or internally-conflicted influences of family members participating in pre-consent discussions 4. Targeting and tailoring consent: operationalizing a relational interpretation of patient autonomy by adapting the consent process to different patient and family expectations, while remaining compliant with ethico-legal rules

Format Requirements: Highly interactive, with limited PowerPoint presentations; format largely comprising group discussion, case studies, and small-group activities followed by full-group analysis and crystallization of key learning points. No prerequisites.

Description and Objectives:

Healthcare providers often report that interacting with members of a patient’s family with the patient present can be difficult to manage and can complicate the promotion and protection of the patient’s autonomy. In this short course, we consider the ways in which existing ethical frameworks and legal doctrines in healthcare may emphasise a narrowly individualistic understanding of autonomy. This interpretation fails to recognize the patient’s social connectedness with family members or close others, especially at a time that the patient’s capacity to make choices is compromised by illness, anxiety or fear. Participants will learn to use a version of the “cultural formulation” to assess what matters most to each patient and family in their personal and cultural contexts, while distinguishing families’ genuine decisional support from unacceptable coercion. Health professionals’ investment in developing constructive relationships with family members may help reduce the risk of expensive conflict especially in the event of adverse treatment outcomes. Participants will also investigate how decision-making and consent processes can be tailored and targeted to the diverse needs of families from every ethnic group or community.

Objectives:

• Introduce the concept of relational autonomy in contrast to Western/individualistic versions of autonomy, and critically examine the extent to which current decision and consent processes promote an individualistic and not a relational approach.

• Broaden understanding of the decision and consent processes from a dyadic framework to a “web-like” framework (patient and family and close others, as well as interprofessional teams of healthcare providers).

• Examine assumptions that may lead clinicians to a defensive approach to the decision and consent processes, and consider perspectives that may enhance collaboration and respect between clinicians and patients and families.

• Introduce tools participants can use to apply the theoretical principles to their own professional environment.