Serious illness care Programme UK: assessing the ‘face validity’, applicability and relevance of the serious illness conversation guide for use within the UK health care setting

BACKGROUND: When doctors have honest conversations with patients about their illness and involve them in decisions about their care, patients express greater satisfaction with care and lowered anxiety and depression. The Serious Illness Care Programme (the Programme), originally developed in the United States (U.S), promotes meaningful, realistic and focused conversations about patient’s wishes, fears and worries for the future with their illness. The Serious Illness Conversation Guide (the guide) provides a framework to structure these conversations. The aim of this paper is to present findings from a study to examine the ‘face validity’, acceptability and relevance of the Guide for use within the United Kingdom (UK) health care setting. METHODS: A multi-stage approach was undertaken, using three separate techniques: 1. Nominal Group Technique with clinician ‘expert groups’ to review the Serious Illness Conversation Guide: 14 ‘experts’ in Oncology, Palliative Care and Communication Skills; 2. Cognitive Interviews with 6 patient and public representatives, using the ‘think aloud technique’; to explore the cognitive processes involved in answering the questions in the guide, including appropriateness of language, question wording and format. 3. Final stakeholder review and consensus. RESULTS: Nominal Group Technique Unanimous agreement the conversation guide could provide a useful support to clinicians. Amendments are required but should be informed directly from the cognitive interviews. Training highlighted as key to underpin the use of the guide. Cognitive interviews The ‘holistic’ attention to the person as a whole was valued rather than a narrow focus on their disease. Some concern was raised regarding the ‘formality’ of some wording however and suggestions for amendments were made. Final stakeholder review Stakeholders agreed amendments to 5/13 prompts and unanimously agreed the UK guide should be implemented as a part of the pilot implementation of the Serious Illness Care Programme UK. CONCLUSION: Use of the guide has the potential to benefit patients, facilitating a ‘person-centred’ approach to these important conversations, and providing a framework to promote shared decision making and care planning. Further research is ongoing, to understand the impact of these conversations on patients, families and clinicians and on concordance of care delivery with expressed patient wishes.