Max and Keira’s legacy: evaluating the 2019 Deemed Consent Act’s impact on Specialist Nurse education

Miller, Cathy (2026). Max and Keira’s legacy: evaluating the 2019 Deemed Consent Act’s impact on Specialist Nurse education. University of Birmingham. Ph.D.

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Abstract

Background:
Organ donation represents a rare yet vital opportunity to save and improve lives. In the UK, only around 1% of deaths occur in circumstances that permit organ donation, and three people die each day while waiting for a transplant. Despite this ongoing need, consent rates have declined. In response, the Organ Donation (Deemed Consent) Act 2019 (ODDC Act 2019) introduced an ‘opt-out’ system, whereby adults are considered willing to donate unless they have formally recorded a decision not to. However, emerging evidence indicates that legislation alone cannot address the complex, multifactorial influences on consent.

The ODDC Act is intentionally ‘soft’, meaning families are always consulted. In practice, grieving and unprepared families may struggle to uphold their relative’s wishes where no prior discussion has taken place, or no clear evidence of intent exists. Although Specialist Nurses in Organ Donation (Specialist Nurses) received a comprehensive, tri-modular national training programme to support implementation, the rollout coincided with the COVID-19 pandemic (2020–2022). During this period, public education initiatives, including the ‘Pass It On’ campaign, were paused, limiting public awareness and understanding of deemed consent.

This thesis evaluates the development, delivery, and effectiveness of the Specialist Nurse training programme between 2020 and 2023. Using a multi-phased, mixed-methods complex systems evaluation, the research evaluates how the Opt-out Education Programme (OOEP) functioned and supported Specialist Nurses in implementing the Organ Donation (Deemed Consent) Act (2019), and generates system-level insights into the strengths and limitations of the UK organ donation system under deemed consent.

Methods:
Nine interconnected workstreams were undertaken, incorporating desk-based and field-based enquiry to evaluate organisational readiness and real-world implementation. Desk-based Workstreams 1.1 and 1.2 included a national Training Needs Analysis survey (n = 117), exploring preferred learning formats and baseline legislative understanding, alongside a series of Operational Survey Temperature Checks assessing emerging confidence and preparedness ahead of implementation. Workstream 1.3 analysed post-course evaluations from the three national training modules: Module 1 (n = 298), Module 2 (n = 248), and Module 3 (n = 215), focusing on perceived clarity, relevance, and usefulness.

Workstream 1.4 involved a critical friend pilot with seven expert Specialist Nurses, including a donor family representative, to review training design and clinical relevance.

Field-based Workstream 2.1 evaluated a three-hour online training session with eight participants, comparing virtual and classroom delivery while piloting the observational tool. Workstream 2.2 then moved into clinical practice, conducting real-time observations of Specialist Nurses undertaking family approaches under deemed consent. An observational framework aligned with Bloom’s Taxonomy was used to assess how Specialist Nurses remembered, understood, applied, analysed, evaluated, and creatively adapted communication strategies in response to family needs. Workstream 2.3 comprised structured post-approach debriefs using Rolfe et al.’s (2001) ‘What? So What? Now What?’ reflective model to elucidate decision making and identify areas for refinement. Workstream 2.4 involved semi-structured interviews with 24 Specialist Nurses, exploring knowledge, confidence, attitudes, and operational interpretation across varied contexts. Finally, Workstream 2.5 surveyed the Specialist Nurse workforce in England, enabling national-level comparison with in-depth regional findings.

Findings and Conclusions:
The introduction of deemed consent during the COVID-19 pandemic limited public understanding of the law and coincided with declining consent rates and reduced public trust in the NHS, negatively affecting Specialist Nurses’ confidence in invoking the legislation. Nonetheless, observational findings demonstrate that families are more likely to support donation when Specialist Nurses provide clear, empathetic, and meaningful explanations, outlining the donation pathway, addressing concerns sensitively, and emphasising the comfort, reassurance, and legacy donation can offer. Such conversations can positively influence families who initially feel uncertain or inclined to refuse.

A key theoretical contribution of this research is the inductive identification of phronesis, practical wisdom, as central to effective practice under deemed consent. Observational and interview data revealed that successful family approaches required more than procedural knowledge; they depended on moral, relational, and contextual judgement enacted in real time. These insights informed the development of a Phronesis-Based Assessment Framework, grounded in Bloom’s Taxonomy, to evaluate both cognitive and wisdom-based dimensions of practice. The framework maps performance across six levels: remembering legislative criteria; understanding safeguards; applying tailored explanations; analysing and structuring donation conversations; evaluating legislative nuances; and creating new narratives when deemed consent is inappropriate or ineffective.

By integrating knowledge, ethical reasoning, contextual awareness, and compassionate communication, the framework demonstrates that legislation alone cannot improve donation outcomes. Rather, skilled and well-supported Specialist Nurses, exercising phronesis in practice, play a vital role in enabling informed family decision making under deemed consent.

Type of Work:

Thesis (Doctorates > Ph.D.)

Award Type:

Doctorates > Ph.D.

Supervisor(s):