ENVISIONING AND DEVELOPING A SYSTEM TO MEET LAST STAGES OF LIFE CARE NEEDS OF PATIENTS AND FAMILIES

摘要

A multiple-perspective qualitative study applying the Appreciative Inquiry (AI) framework was carried out with the goal of (re-)building the system of care for individuals in their last stages of life in Ontario, Canada. The “Discover” and “Dream” phases within the AI framework aimed at understanding what factors enable patients and their family caregivers to positively perceive and appropriately access available services and supports in the current system of care. 26 clinically frail elderly patients and/or their family caregivers were interviewed, and their lived experience and encounter with the system were documented and coded using grounded theory principles. Rich narratives revealed the needs of patients and caregivers, and the barriers and supports they faced while attempting to navigate Ontario’s system for care. They identified the following processes as potential platforms for positive changes: diagnosis, prognosis, assessment, access, resources, advocacy, and communication. Patients’/Caregivers’ narratives were presented to 11 expert stakeholders from different professional groupings – medical, social, legal and ethics, administration and policy – who were then interviewed as part of the “Design” and “Destiny” phases within the AI framework. Expert stakeholders considered patients/family caregivers’ lived experience in the broader context, and made recommendations on how to motivate and implement a path and vision for system change. Stakeholders commented on the need for professional training in communicating sensitive issues with patient/family, public education and awareness regarding hospice and palliative care, enhanced advocacy supports, an expanded model for applying palliative care principles, and the need for different professional sectors to work collaboratively towards these goals.