Stakeholder engagement as a strategy to enhance palliative care involvement in intensive care units: A theory of change approach

Abstract

Background: Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in ICU through a stakeholder participatory approach.

Methods: Theory of Change approach was used to develop a hypothetical causal pathway for palliative care integration into ICUs in India. Four facilitated workshops and fifteen research team meetings were conducted virtually over three months. Thirteen stakeholders were purposively chosen, and three facilitators conducted the workshops. Data included workshop discussion transcripts, online chat box comments, and team meeting minutes. These were collected, analysed and represented as theory of change map.

Results: The desired impact of palliative care integration was good death. Potential long-term outcomes identified were fewer deaths in ICUs, discharge against medical advice, and inappropriate admissions; increased referrals to palliative care; and improved patient and family satisfaction. Twelve preconditions were identified, and eleven key interventions were developed. Five overarching assumptions related to contextual factors influencing the outcomes of interventions.

Conclusion: Theory of change framework facilitated the identification of proposed mechanisms and interventions underpinning palliative care integration in ICUs.

Keywords: Causal pathway; India; Intensive care; Lower- and middle-income countries; Palliative care; Theory of change.