Advance care planning in the perioperative setting

  • Research type

    Research Study

  • Full title

    Understanding the patient and healthcare professional experience of advance care planning in the perioperative setting: A qualitative study

  • IRAS ID

    268409

  • Contact name

    Cecilia Vindrola

  • Contact email

    c.vindrola@ucl.ac.uk

  • Sponsor organisation

    University College London

  • Clinicaltrials.gov Identifier

    Z6364106/2020/02/01, UCL Data Protection Registration Number

  • Duration of Study in the UK

    1 years, 7 months, 4 days

  • Research summary

    Summary of Research
    This application is to study the communication between healthcare professionals (‘HCP’s) and high-risk patients in the perioperative period. Specifically, the focus is around Advanced Care Planning (’ACP). ACP is defined as ‘ a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care’. The perioperative period is defined as the days and weeks immediately preceding and following a surgical intervention’. \n\nWe will be studying three areas:\n1)\tThe values, expectations and beliefs of high-risk patients and HCP’s regarding ACPs\n2)\tHow patients perceive and make meaning from conversations regarding uncertain outcomes\n3)\tThe real world perioperative journey of patients (e.g. clinic appointments)\n\nWe will conduct this study using semi-structured interviews, non-participant observation and clinical notes analysis. The main participants will be HCPs who are involved in the perioperative period and high-risk patients who are those identified as having an increased risk of mortality (>5%) after surgery. We will perform this study over 3 sites in different hospital trusts. We will gather our data, analyse it and write it up as part of a PhD project.

    Summary of Results
    Through ACP, patients can communicate and record their wishes in advance, circumventing the issue that many critically unwell patients, are unable to participate in their care. Despite the theoretical neatness of this solution, in practice, ACP is unpopular with low uptake. I characterise ACP as a complex process, occurring within perioperatively, defined by the interrelationships between the healthcare system (‘HCS’), the participants (patients and HCPs), and relevant concepts (e.g. relationship to illness).

    Results from this study indicated that high-risk patients sought surgery as an indispensable step to restoring their health and ‘normalcy’ via the preservation of their independence, identity, and family roles. They formed relationships with HCPs, and valued those who treated them as individuals, communicated well and who they judged as honest, competent, trustworthy, and kind. HCPs valued the formation of trusting relationships with their colleagues, complicated by power differences between individuals. HCPs and patients participated in an informed consent process, where risks and benefits of surgery were discussed. HCPs and patients’ frameworks of risk did not align, with patients including components, not considered by HCPs (e.g. emotion). HCPs and patients acknowledged uncertainty but did not discuss it routinely. Within the areas of autonomy, decision-making and information seeking, inter-individual variability existed regarding choice preferences. Similarly, variability existed between individual HCPs and patients regarding their ability to discuss morbidity and mortality.
    Patients and HCPs were situated within a fragmented healthcare system lacking in resources (e.g. physical space) and the ability to deliver continuity of care. Finally, many patients and HCPs were unaware of ACP. It was overly associated with dying, and there was lack of agreement of what the documentation would look like, when, where and who would discuss it.

  • REC name

    North of Scotland Research Ethics Committee 1

  • REC reference

    20/NS/0096

  • Date of REC Opinion

    7 Oct 2020

  • REC opinion

    Further Information Favourable Opinion