“It’s hot potato, nobody wants these people”: Palliative and end-of-life experiences among people with opioid use disorder and life-limiting illness
Lisa M. Boucher, Jenny Lau, Rebecca Bagnarol, Kyle Drouillard, Ladees Al Hafi, Sheila Jennings, Andrew McLeod, Camilla Zimmermann, Teighan Killackey, Joanna Binch, Anne Meaghen Hagarty, Taliesin Cahill, Nicole Buchanan, Tara Gomes, Sarina R. IsenbergBackground
People with opioid use disorder (OUD) experience disproportionate premature mortality compared to the general population, yet receive less palliative care. End-of-life experiences of people with OUD and life-limiting illness, and of healthcare providers caring for these individuals, remain poorly understood.
Objectives
To explore how people with OUD access and experience palliative and end-of-life care, and how providers navigate caring for these patients.
Design
The qualitative phase of a mixed methods study using applied thematic analysis informed by stigma theory.
Methods
We recruited participants across Canada using purposive and snowball sampling. Participants included 19 people with OUD and life-limiting illness (whether or not they received palliative care) or their caregivers, and 44 healthcare providers across diverse settings. We collected data using semi-structured interviews and focus groups. We coded transcripts via a codebook of inductively- and deductively-developed codes, and distilled themes through iterative team synthesis.
Results
People with OUD faced pervasive barriers accessing quality palliative and end-of-life care, including three themes of complex health and social needs, stigma/discrimination in care, and broken healthcare systems. These challenges led to missed diagnoses, limited palliative care, reluctance to enter inpatient settings, and difficulty with prognostication, often resulting in negative outcomes. Conversely, the few patients with OUD who received specialized palliative care mostly cited positive experiences. A fourth theme centers on providers considering interdisciplinary collaboration to be both a barrier and solution. The final theme highlights other solutions, including innovative, tailored supports, comprising trauma-informed and harm reduction approaches and unique community-based services.
Conclusion
Palliative care systems should further embrace and integrate patient-centered care for people with OUD, which includes trauma-informed and harm reduction approaches, with greater investment in innovative community-based services. Improved training and collaboration are also required for palliative care and addiction medicine/harm reduction providers to ensure patients with OUD receive sufficient care across settings.