Conclusion
The concept and aims of ECTPs in general, and the ReSPECT process in particular, are widely supported by health and social care professionals, patients and the public. For patients, their families and care home staff, the primary benefit was seen as enabling the patient’s wishes, preferences and values to be recorded to inform future decision-making. Eliciting, understanding and documenting what is important to the patient can take time and multiple conversations, and works best when the patient has a trusted relationship with the healthcare professional. Preparatory conversations, before a plan is introduced, are seen as useful and care home staff sometimes take on this role. Preparation for a ReSPECT planning conversation is seen as particularly important for people with a learning disability. However, despite the consensus that ReSPECT plans should be a means of communicating a patient’s preferences and values, there is wide variation in whether and to what extent the patient preferences section of a ReSPECT plan is completed in practice, and it is not always clear who has been involved in the conversation when a patient lacks capacity.
There is a lack of consensus on the purpose and authority of the recommendations recorded in a ReSPECT plan, with patients, families, care home staff, and some clinicians seeing them as determinative while most clinicians consider them to be guidance. This lack of consensus is compounded in practice by a lack of clarity or detail in many recorded recommendations. The level of uncertainty around potential future clinical events and treatment options for a patient in a community setting cannot be easily translated into specific recommendations, and recommendations recorded in a hospital setting are seen as unhelpful in the community. This can create confusion and conflict in an emergency and consequent risk of harm to patients.
There are major challenges to ensuring timely access to ECTPs by the health and social care professionals who are making treatment decisions. We found significant variation in whether ReSPECT plans were held electronically or in hard copy, confusion by patients about who holds the plan, and unreliable methods of transfer of plans between secondary and primary care.
Recommendations for future research
We have identified four areas where the study findings have implications for practice. Linked to these areas, we have identified three questions for future research. In addition, we have identified a need for further research to specifically engage with and explore the views and experiences of groups with diverse cultural or faith perspectives. In view of the challenge in recruiting paramedics to this study, and given the important role they play in implementing ReSPECT recommendations in practice, further research is needed on the experiences and views of paramedics relating to ECTPs. We have therefore identified the following priority research questions.
- What are the experiences and perspectives of people from minority ethnic and faith-based communities on the concept and use of ECTPs including ReSPECT?
- What are the experiences and perspectives of paramedics on the use of ECTPs in general and ReSPECT in particular?
- How can we improve the integration of ReSPECT recommendations and patient preferences into treatment decision-making in an emergency in a way that is consistent, transparent and ethically justifiable?
- What interventions are effective for increasing awareness of and preparation for emergency care treatment planning in the general population and in specific at-risk groups?
- What are the benefits and challenges of a shared electronic record system for storing and accessing ECTPs?