Embedding digital empathy to transform end-of-life care transitions

CW Innovation Fellow: Dr Sameera Jahagirdar

Role: Speciality Doctor in Intensive Care Unit
Organisation: West Middlesex University Hospital, Chelsea and Westminster Hospital NHS Foundation Trust

Heyoka: Digital Empathy Platform for End-of-Life Care Transitions 

Summary: The Heyoka project addresses critical gaps in end-of-life care transitions from ICU to general wards. Our comprehensive research at West Middlesex University Hospital revealed a 93.5% documentation gap and significant barriers to compassionate family engagement during these profound moments. We are developing an AI-powered platform that embodies “digital empathy” principles to facilitate meaningful family communication, enhance documentation, and provide empathetic support throughout the end-of-life journey. 

Story of the project

This project was born from tragedy. A family’s devastating experience during their loved one’s transition highlighted the human cost of our fragmented systems. Combined with The Faculty of Intensive Care Medicine’s recommendation to transfer patients unlikely to die within 24-48 hours from ICU, this sparked my determination to transform end-of-life care transitions at West Middlesex University Hospital. 

Beginning in May 2024, I conducted a systematic audit at the hospital, revealing profound disconnects. While 96% of staff valued family communication, only 6.5% of staff working in end-of-life care completed the required Compassion Care Agreement (CCA) documentation. More concerningly, we discovered medication cessations, communication breakdowns and families feeling abandoned during transitions. These findings shaped the Heyoka blueprint – a comprehensive concept addressing all identified barriers by leading with digital empathy principles. 

Through the Fellowship, this project evolved significantly. Initially, I focused on uncovering the “why” behind our failures, uncovering a staggering 93.5% gap between knowledge and practice. This evidence-based foundation through the audit was crucial for engaging sceptical stakeholders and justifying the need for transformation. 

The Fellowship then guided my self-preparation journey. I completed targeted learning modules on change management in digital innovation, recognising that technical solutions alone wouldn’t suffice. My mentor proved instrumental in shaping the Heyoka concept. They helped me to understand how to navigate the complex ecosystem of stakeholders, from resistant clinical teams to overwhelmed IT departments struggling with electronic health record integration. 

Key challenges emerged at every level. Technical barriers include integration with existing Cerner systems, while organisational inertia meant convincing multiple teams of the need for change. I learned to translate complex audit data into compelling narratives for transformation leaders, aligning our vision with the pressing need to maintain dignity in end-of-life care. The Fellowship taught me that successful digital innovation requires patience, persistence, and the ability to speak multiple “languages” – clinical, technical, and administrative. 

Our key aims crystallised through this journey:  

• developing a platform that increases documentation compliance; 

• demonstrating measurable improvements in family satisfaction and staff empathic capacity; 

• creating a sustainable model where technology enhances rather than diminishes human connection; and 
  
• ultimately establishing Heyoka as the standard for digitally supported, empathy-centred end-of-life care transitions across the NHS.   

The role of lived experience

Lived experience was essential because end-of-life care exists at the intersection of clinical excellence and profound humanity. Our research revealed that staff possess deep wisdom about these transitions but struggle with systems that fragment their natural workflows and diminish their capacity for presence. 

Key insights included the emotional burden of current documentation systems that reduce sacred moments to administrative tasks, the need for flexible guidance rather than rigid protocols, and families’ desire for genuine connection over perfect communication. Staff particularly highlighted how current language like “step down” inadvertently signals care reduction rather than continuation. 

These insights fundamentally shaped Heyoka’s conceptual design. Rather than creating another compliance tool, we’re developing an adaptive system that captures information through natural clinical workflows, provides gentle prompts for difficult conversations, and uses language honouring care continuation.

The digital toolkit, currently in development, will embody Heyoka principles: reflecting emotions back to increase awareness, shifting perspectives to reveal new possibilities, and bringing appropriate lightness to profound moments. This ensures technology serves to amplify our human capacity for compassion during life’s most sacred transitions. 

Outcomes

Our phased implementation at West Middlesex University Hospital has established strong foundations. Research phase achievements include comprehensive gap analysis with participating ICU staff, revealing critical insights about workflow barriers and emotional needs. Early stakeholder engagement has begun preparing ICU staff through simulation-based learning on end-of-life care standards, emphasising the importance of compassionate communication. 

We’ve initiated partnerships with key technical and clinical stakeholders to develop the platform architecture. Staff feedback reveals frustration with current “tick-box” documentation that lacks empathy, reinforcing the need for our approach. Educational modules addressing identified knowledge gaps are also in development. 

Current metrics being established include baseline documentation rates, family satisfaction scores, and staff confidence levels. These will enable robust evaluation as we progress to pilot implementation. 

Advancing the project through CW Innovation Fellowship

I applied to the Fellowship to transform my clinical observations into sustainable innovation. The Fellowship provided essential skills in digital health leadership, project management and strategic thinking, which are all essential to navigate complex healthcare transformation. 

Most valuable was structured mentorship guiding strategic positioning of Heyoka. This supported me to enhance my understanding of how to balance technological innovation with preserving sacred human connections. Skills gained include stakeholder mapping, digital project planning, and translating clinical needs into technical specifications. 

During the Fellowship, I learned that effective digital innovation requires patience, perseverance and the ability to communicate in clinical, technical and administrative languages.

The Fellowship exceeded expectations through its NHS-specific focus and practical frameworks. The Clifton Strengths assessment was particularly transformative, revealing how my top strengths – Relator, Restorative, Learner, Connectedness, and Intellection – perfectly align with this project’s needs. My Relator strength drives deep stakeholder relationships essential for co-design, while Restorative helps identify and solve the complex problems in current systems. The Learner in me embraces the digital health journey, Connectedness sees how all elements of end-of-life care interconnect, and Intellection ensures thoughtful analysis underpins every decision. 

Being part of an NHS digital programme normalised technology conversations in clinical settings and connected me with fellow innovators in the trust that are facing similar challenges. This community provided both practical insights and emotional support for tackling such profound healthcare challenges. The Fellowship transformed me from a clinician with concerns to a digital health innovator with actionable plans for creating meaningful change. 

Next steps

Following our strong base research and blueprint roadmap: 

• Phase 1: Heyoka concept refinement, trust wide stakeholder alignment, and regulatory compliance planning.  

• Phase 2: Design user experience, develop content framework, and create interactive prototype.  

• Phase 3: Conduct clinical testing of Heyoka AI-based platform, gather family feedback, and refine platform design.  

• Phase 4: Prepare for pilot implementation and develop scalability framework. 

Each phase includes specific deliverables ensuring systematic progress toward a platform that truly serves patients, families, and healthcare professionals. 

For more information on the CW Innovation Fellowship, which has been rebranded from the Horizon Fellowship, visit the CW+ website. You can also check out our Innovation Directory to browse through the full list of Fellows.