Some parts of this chapter reflect discussion in Slowther et al.63 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/
Benefits of completing a ReSPECT plan in primary care
There are several reasons why it may be desirable for ReSPECT plans to be completed in a primary or community setting rather than in hospital. When arriving at hospital, people may be too unwell and their family too distressed to engage in a potentially complex conversation about future deterioration and treatment options. Providing sufficient time and a supporting environment for such a conversation may be difficult.8 Thus, many clinicians suggest that these conversations would be better initiated by a primary care clinician, who may also have an established relationship with the patient. Our participants reflected this view. GPs, nurses and care home staff emphasised the benefit of completing a plan when the person was still able to engage in the discussion and express their wishes. Care home staff also noted the benefit to carers of having a clear plan for the person in their care. Some GPs had incorporated ReSPECT plan completion into wider care planning particularly for patients who were residents in care homes. Care home staff also talked about the benefit of having focussed ReSPECT plans for emergencies but emphasised the need for a more comprehensive care planning document where personal preferences and values could be expanded on. However, GPs also reported lack of time to have these conversations and some patients and families described conversations that were rushed with little preparation.
Providing clear recommendations for use in the event of a clinical emergency or acute deterioration
A major challenge for completion of ReSPECT plans in primary care is the level of uncertainty inherent in anticipating for an individual person their illness trajectory, potential acute clinical scenarios and the range of treatments or interventions that need to be considered. Clinical uncertainty influences secondary care clinicians’ decision to initiate or complete a ReSPECT plan with a patient in their care.18 However, the scope of uncertainty in the acute care setting is less than in primary care where the range of potential future clinical events and relevant interventions is not constrained by the nature of an admitting event. Drawing on the taxonomy of uncertainty in medicine suggested by Han et al.,91 we can interpret the uncertainty reported by the clinicians in this study as clinical (uncertainty of prognosis or potential future acute events), practical (uncertainty of what might be possible for delivery of care in the future) and personal/ethical (uncertainty over what will be in the person’s best interests at a future date, or how the person’s views and wishes may change over time). As the level of uncertainty increases for each or any of these elements, the level of confidence in the recommendations made in the ReSPECT plan will diminish. In practice, GPs’ implicit response to this uncertainty challenge is to initiate ReSPECT conversations in situations where there may be less uncertainty about illness trajectory, for example, when patients are nearing the end of their life.
This is a challenge for both clinicians completing the plan and for health and social care professionals interpreting the recommendations in different situations. Recommendations may not be relevant to the emergency situation, may not be achievable, or may no longer be consistent with the patient’s wishes. This can result in recommendations being misinterpreted or not followed. This risk was recognised by respondents in both our public and GP surveys and clearly articulated in the experiences of care home staff, who sometimes struggled to translate recommendations into guidance about what they should do in an emergency. They also expressed frustration when ambulance staff acted in a way that they perceived as inconsistent with either the recommendations or patient’s current best interests. The difficulty of translating ReSPECT recommendations during an emergency in a care home setting has been reported elsewhere.43 There is limited literature on how ECTPs are used by healthcare professionals in an emergency. Evidence is predominantly from the United States where physician orders for life-sustaining treatment (POLST) are extensively used across healthcare settings. A systematic review of 20 observational studies of the influence of POLST on treatment intensity among patients with serious illness and/or frailty concluded that while there was some evidence that treatment limitation recommendations on POLST may reduce treatment intensity among seriously ill patients, there were concerns that a substantial number of patients received POLST discordant care.92 Two studies investigating understanding of POLST recommendations in the prehospital and emergency department setting found significant confusion in interpretation of the recommendations.93–95
Considering ACP more widely, there is mixed evidence on their influence on treatment and care decisions. A meta-analysis of 21 studies (N = 33,541) of ACP in cancer care found that the communication element of ACP was more important in influencing outcomes than the documents themselves.96 Physicians value ACPs as part of their decision-making process but other factors also influence the decision including, prognosis, reversibility of condition and family views.97 There is a major question for the use of ECTPs, including ReSPECT, as to whether recommendations facilitate, impede or make no difference to provision of care in medical emergencies that is concordant with the patient’s values and wishes.
Person-centred care
In UK law, someone making a decision for a person who lacks capacity must make a decision based on an assessment of that person’s best interests (in Scotland it is the benefit to the person).98,99 The General Medical Council in its guidance for doctors, refers to overall benefit.20 Legal and professional guidance for healthcare professionals makes it clear that an assessment of best interests should focus on the patient’s needs, preferences, and values so that any decision is person centred. The decision-maker in the emergency situation must take account of the current clinical needs of the patient, including the risks and benefits of treatment options available at that time. Recommendations on a ReSPECT plan may not anticipate the current clinical situation.
However, the ReSPECT plan is also a record of the patient’s values and preferences, what is important to them and what would be their goals of care in future emergency situations. As such, the ReSPECT plan has the potential to make a strong positive contribution to the assessment of what will be of overall benefit to this patient. It is this element of ReSPECT that is seen as paramount by all our participants and by participants at the stakeholder meeting; ensuring that the patient’s values and preferences are foregrounded in any decision-making if they cannot participate themselves. However, in our review of completed ReSPECT forms, just over half had a completed patient preferences section, although in some the recommendations were framed as patient preferences. Whatever the quality of the conversation, if patient preferences and values are not recorded in the plan, the role of the plan in the decision-making process is diminished.
Whether ECTPs result in, or are associated, with treatment congruent with patients’ preferences and values has been the subject of investigation elsewhere. Studies have found that POLST orders can often be inaccurate, undisclosed, and discordant with patient wishes for medical care.100 Reasons identified for discordance between POLST and patient preferences include lack of discussion or support during completion of POLST; incomplete documentation; influence of family on preferences or decisions; and changes in patient preferences over time.101
In over half the ReSPECT forms evaluated, the patient lacked capacity at the time of completion of the plan. Thus, to understand and accurately record the patient’s preferences and values, the GP or nurse completing the plan needs to have the ReSPECT conversation with someone close to the patient who knows them well, usually a member of their family. The requirement to consult with someone close to the patient when making a best interest decision is specified in the relevant mental capacity legislation. There was substantial concern during the COVID-19 pandemic that anticipatory decisions about CPR and other emergency treatments were being documented in DNACPR orders or ReSPECT plans without involving the patient or someone close to them, leading to a review by the Care Quality Commission.35 Their report emphasised the need for healthcare providers to ensure that people and/or their representatives are included in these conversations, in a way that meets their needs and protects their human rights. We found that, for people who lacked capacity, the name of the person close to them with whom the ReSPECT conversation had taken place was not recorded in 43% of the forms we reviewed. This is similar to the findings in our previous study of ReSPECT in secondary care. This does not necessarily mean that conversations did not take place, but the lack of documentation both reduces transparency of decision-making and makes it more difficult to involve the relevant person in decision-making at the time of an emergency.
Placing more emphasis on the importance of accurate recording of the patient’s preferences and values, and the identity of the person who should be involved in decisions if the patient lacks capacity, would enhance the impact of ReSPECT plans and contribute to treatment decisions likely to be congruent with the patient’s goals of care.
Relationships and trust
A consistent message from the study participants across all WPs was the importance of a trusting relationship between the patient, or the family member if the patient lacked capacity, and the person completing the plan. For many this person was likely to be the patient’s GP, but the important criterion was that they understood the patient’s clinical condition and what was important to them. GPs and specialist nurses were often able to establish a relevant trusting relationship in a short period of time but might require several visits and conversations to do so. For patients or carers of people with complex health conditions, a longer-lasting relationship with an expert in the clinical conditions is important, as described by carers of people with a learning disability. Many people with long-term health conditions or with increased vulnerability to risk of acute illness may have trusted relationships with staff other than doctors and specialist nurses. These may include care home staff, home care workers and support workers for people with a learning disability. Involving these people in conversations about ReSPECT may increase trust in the process for the patient and potentially facilitate a richer discussion of what is important to them. In our interviews with care home staff, some described either having preparatory conversations with a resident or being present during the planning conversation to support and reassure the resident. A willingness by care home staff to take on this facilitative role in ReSPECT conversations has been reported elsewhere.43 Further exploration is needed of the potential for expanding the range of health and social care professionals who can be involved in ReSPECT conversations, the ways in which they can be involved and the skills training required.
Making ReSPECT work within the complexity of health and social care
The concept of ReSPECT is that it is a single, patient-held plan enabling information about patient preferences and treatment recommendations to be transferred across healthcare settings to facilitate seamless and consistent decision-making for an individual patient. As described by May et al.,7 clinicians see ReSPECT as a means of making possible two desirable goals:
- the translation of individual patient preferences to mitigate clinical decision-making in an emergency
- the transportation of agreed actions (recommendations) around organisations and across organisational boundaries to mitigate risks resulting from informational and relational fragmentation.
We found that there are substantial challenges to realising these aims when considering the use of ReSPECT in a community setting. As described above, the interpretation of recommendations in an emergency can be problematic, if they are not clearly articulated and relevant to the situation at hand. From our data, we found that different clinicians may interpret recommendations differently, and that non-clinicians such as care home or home care workers face considerable uncertainty in knowing how to interpret a ReSPECT plan when responding to the collapse or sudden deterioration of a person in their care. The challenge is greatest for plans completed in hospital and not reviewed on discharge where the recommendations relevant for an acute inpatient admission do not translate into a community setting. The difficulties experienced by social care staff are likely to be even greater for family members who may be asked to communicate details of ReSPECT recommendations to a healthcare professional or ambulance responder over the telephone. Problems in sharing decisions and preferences within and between healthcare organisations has also been identified as a barrier to successful implementation of ACP more generally.102
A more practical challenge in achieving the desired transportation of recommendations across health organisation boundaries is the potential for loss or misplacement of the form documenting the plan, and uncertainty about its validity as the most recent version. Ideally, the plan should remain with the patient but, as we found, patients or their relatives do not necessarily know where their plan is or understand that they are its custodians. Copies are not consistently held in general practice record systems and not all practices have policies or processes to ensure that the most recent version is identifiable. Care homes are more likely to have access to the ReSPECT plans of their residents, but care home staff describe ReSPECT plans being lost when residents attend hospital. All health and social care professionals in our qualitative study and delegates at our stakeholder meeting agreed that an electronic version that was accessible to all people who had a need and authority to access it was the preferred solution for the issue of access and version control.
Shared electronic healthcare records as a means of sharing information to improve patient care is widely supported and many healthcare organisations are investing in these systems. However, studies have identified a need for caution particularly in the context of ACP and emergency treatment. Data, whether electronic or hard copy, need to be accurate, comprehensive and easily retrieved. Studies in the United States have found that ACP documentation in electronic healthcare records may be incorrect and identified challenges in the interoperability of systems between primary and secondary care.103,104
There are several examples of electronic palliative care co-ordinating systems in the UK.105–107 While the potential benefit of these systems is recognised, health and social care professionals also express concerns including impact on GP workload, quality of completion of records, and data protection issues.108 Making decisions about treatment in an emergency brings additional problems for paramedics because of practical issues, such as connectivity and time, as well as ongoing concerns about the quality of the information recorded.109
Current evidence suggests the use of a shared electronic healthcare record system as a vehicle for delivering information about ECTPs has potential but still requires good documentation of relevant information and issues of accessibility, including accessibility for patients and their families, and data protection must be addressed. These issues were all identified by attendees at our stakeholder meeting.
Implications for decision-makers
The findings of this study have important implications for practitioners, healthcare systems and policy-makers who are involved in providing person-centred emergency care and treatment. A ReSPECT plan, or similar ECTP, has the potential to support clinical decision-making in an emergency that is grounded in the preferences, values, and prior knowledge of that person. However, there are several challenges that need to be considered for ECTPs to achieve their aims.
- Our findings reveal a gap between the expectation that ReSPECT will translate patients’ values and preferences into recommendations and action in a clinical emergency in the community setting and what happens in practice. Understanding a patient’s values and preferences to inform a best interest decision is often more important to decision-makers than specific clinical recommendations, with the exception of the recommendation on CPR. Care home staff want clearer guidance on how to translate recommendations into their own decision-making for a resident who has become acutely unwell. These findings suggest that:
- Healthcare professionals should place more emphasis on the importance of accurate recording of the patient’s preferences and values and integration of these into their justification for clinical recommendations in existing plans.
- There is a need for education and training around the interpretation and implementation of ReSPECT recommendations in an emergency context. Specific consideration should be given to the needs of care home and home care staff in this context.
- Our findings suggest that ReSPECT planning requires time and preparation and works best when there is a trusting relationship between the patient and the healthcare professional participating in the conversation. However, increasing pressure on GPs’ time and the changing nature of the patient doctor relationship in primary care, can create challenges for achieving high quality ReSPECT planning conversations. Our findings suggest that there is support for:
- widening the pool of healthcare professionals who undertake ReSPECT planning conversations.
- involving social care staff and patient support workers who may have a more established relationship with a patient in facilitating initial discussions to raise awareness of emergency care treatment planning. Appropriate training would be required to support this development.
- People with a learning disability want to be able to have their wishes and preferences about care and treatment in future emergencies recorded, and to be part of a ReSPECT conversation. Family carers of people with a learning disability emphasise their role as advocate for the person with a learning disability. A key message from our findings was the importance of careful preparation and appropriate support to enable people with a learning disability to take part in ReSPECT conversations. This includes:
- identifying the right person or people to support the person with a learning disability.
- time and resources to explain what ReSPECT is and support the person to think about and communicate their preferences.
- We identified significant challenges in accessibility and sharing of ReSPECT plans across health and social care systems in this study. As electronic healthcare records become more common, policy-makers and commissioners will need to consider how ECTPs such as ReSPECT are integrated effectively into these systems.
Strengths and limitations of the study
This study provides an overview of the use, experience and perception of emergency care treatment planning in a primary and community care setting. A major strength is its mixed-methods approach and the range of different lenses through which the issue is explored. Our public and GP surveys provide insight into how emergency care treatment planning is conceptualised. Interviews with patients, families, clinicians and care home staff provide a rich understanding of its reality and to what extent the concept and aims of emergency care treatment planning is realised in practice. Including a specific WP that engages with people with a learning disability and their carers provides an important but often missed perspective.
For both our public and GP surveys, we obtained high-quality data sets with sufficiently large samples to produce precise estimates for all our outcomes of interest. Our samples were nationally representative. However, recruitment methods for the public survey may have excluded people for whom ECTPs may be particularly relevant, for example the frail elderly. Using a market research company working through a commercially funded, free to use, website for data collection may have introduced bias into the sample selection for the GP survey. Recruitment to focus groups across the study was challenging and we had particular difficulty in recruiting faith leaders for both interview and stakeholder meeting attendance. Recruiting more participants may have provided further and different accounts of emergency care treatment planning.
Recruitment of GP practices and associated care homes across three CCG areas allowed us to explore a wide range of experiences of the ReSPECT process in different primary care contexts. The conversations with practice administrative and support staff provided additional important insights into how ReSPECT is embedded or not in GP practices. Participating practices and individual interview participants may have a particular interest or strong views about ReSPECT which may not be reflective of health and social care professionals’ views more broadly. However, our qualitative findings were supported by attendees at the stakeholder meeting. A key limitation is the small number of patient and families who agreed to be interviewed about their experience of ReSPECT. This may be reflective of the focus of the study. ReSPECT plans are predominantly completed with people who are frail, nearing the end of their life or in a care home. Completion of a ReSPECT plan is not a live issue and many people with a plan may not recall the conversation or feel it is not currently relevant to them. Those who chose to participate may have been more comfortable with discussing ReSPECT and as such, their experiences and views might not be representative. In both the public survey and qualitative data collection with patients, families and the public, there is under-representation of minority ethnic groups.
Patient and public involvement
We have embedded PPI throughout this project (see Chapter 2). Our lay advisory group contributed to all stages from informing our initial funding application, commenting on patient and public facing materials, advising on recruitment strategies and reviewing initial analyses of data. Members also attended the stakeholder meeting and commented on the overall findings. Feedback from the group at the end of the study was positive, with members expressing that they felt that their contribution had made a difference. Meetings were mainly held online to facilitate access and attendance with an option for two face-to-face/hybrid meetings. Some members felt that further face-to-face meetings would have enabled more social interaction and may have been preferable. A combination of online and face-to-face meetings is probably ideal.
The WP focusing on the experience of people with a learning disability in relation to ECTPs included a reference group who were actively involved in planning study workshops and presenting to the stakeholder meeting. They also had a major contribution to the development of resources that informed the output of this WP. Their involvement, including their combined reflections on their experience of involvement in the study is reported in Chapter 8. Overall, they enjoyed their participation in the project and valued the feedback on how their input shaped the project but felt more could have been done to integrate them into the wider project team.
Equality, diversity and inclusion
Emergency care treatment plans can be relevant for anyone, although previous evidence, confirmed in this study, shows that they are used more often with someone who is nearing the end of their life, resident in a care home, and the frail elderly. In this study, we aimed to capture the views of the whole population using a public survey, as well as exploring the experiences of people who had been involved in the ReSPECT process. We anticipated that cultural values and faith may influence people’s views on ReSPECT and therefore sought to recruit from community faith groups for our focus groups and to interview faith leaders. Where a GP practice had a high population of non-English speakers, we provided invitation letters and information sheets to patients and their families in both English and the relevant language. To capture the needs and perspectives of people with a learning disability we worked with an advocacy organisation and participants with a learning disability in a series of co-production workshops. Easy-read versions of all participant documentation and materials were used in the workshops for people with a learning disability.
The sample for the public survey was generally representative, although minority ethnic groups were slightly underrepresented against age standardised values.
Recruitment of participants from minority ethnic groups and faith leaders was challenging. While the aim of this study was to capture as broad a perspective as possible with multiple methods and data sources, further research is needed that is specifically designed to work with and capture the perspectives of minority ethnic and faith-based populations on the concept and use of ECTPs.