How do patients and their relatives experience the ReSPECT process? A qualitative study in primary care contexts

Problem

The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was developed in the UK in 2016. ReSPECT is designed to support conversations between healthcare professionals (HCPs), patients and their family about treatment preferences in situations where the patient is acutely ill and cannot make decisions for themselves. ReSPECT has been adopted across NHS Trusts and primary care practices in many areas of the UK. However, little is known about how patients and their relatives experience the ResPECT process, and no study has examined patients’ and relatives’ experiences of ReSPECT in primary care.

Approach

Conducted as part of a larger study exploring the use of ReSPECT in primary care, this interview-based study explores patients' and relatives' experiences of ReSPECT. General practice surgeries in three areas in England identified patients who had a ReSPECT form. Either the patients or their relatives (if patients lacked capacity) were recruited. Semi-structured interviews were conducted in-person or over the telephone, depending on participant preference. The interviews focused on how participants experienced and understood the ReSPECT process and form. Data were analysed using inductive thematic analysis, taking both semantic and latent approaches. Three researchers analysed the data, with one analysing the complete dataset and two analysing a subset for intercoder reliability.

Findings

Thirteen interviews took place (six with patients, four with relatives, and three with patient and relative pairs). Nine participants or participant pairs had a ReSPECT conversation with an HCP, while four did not recall having a ReSPECT conversation; however, all had a ReSPECT form in place. Four themes were developed: (1) ReSPECT records a patient’s wishes, but is entangled in wider familial and HCP-patient relationships; (2) HCP framings of ReSPECT influence patients’ and relatives’ understandings and experiences, both positively and negatively; (3) patients and relatives describe ReSPECT as a do-not-resuscitate or end-of-life form; (4) patients’ and relatives’ engagements with the ReSPECT form vary considerably, reflecting HCP explanations of how the form might be used.

Consequences

Co-developing a ReSPECT record of treatment preferences and recommendations with an HCP can be a reassuring experience for patients and their relatives. This is achieved when HCPs take time to explain the ReSPECT process and form, allow an open discussion of patients’ preferences, and provide clear and empathetic explanations of treatment recommendations. However, when this does not occur, patients and families can be left confused about the form or frustrated about how the ReSPECT process had been conducted. Research should explore how to overcome constraints which may lead to the uneven implementation of ReSPECT in primary care settings.