Electronic palliative care coordination systems (EPaCCS) are being developed in many localities to coordinate care across health and social care settings for people with advanced illnesses. Regional UK examples include Coordinate My Care, the South-West EPaCCS and Leeds EPaCCS (Riley and Madill, 2013; Pringle et al, 2014; Allsop et al, 2017; Petrova et al, 2018). In Scotland, the Key Information Summary (KIS) is used to coordinate this care (NHS Scotland, 2013; Petrova et al, 2018; Scottish Clinical Information Management in Practice, 2020). The KIS enables unscheduled healthcare providers, including ambulance and emergency services, out-of-hours GPs and palliative care teams, to access patient information and care preferences, guiding clinical decision-making out-of-hours (NHS Scotland, 2013; Tapsfield et al, 2019).
GPs, or others within the primary care multidisciplinary team (MDT), update KIS with information including the patient's medical situation, carers' details, resuscitation status and anticipatory care plans (ACP). In Scotland, the ACP is the documentation of future care plans made with a patient who has capacity or with their next of kin where capacity is lacking. These details are updated as the patient's condition and wishes change; however, write-access is restricted to primary care professionals (NHS Scotland, 2013). Therefore, updates require ongoing communication between settings. This differs from other systems (e.g. Coordinate My Care), which can be edited by health and social care professionals outside of primary care (Finucane et al, 2020).
This study examined KIS content for new referrals to a Scottish community specialist palliative care team (CSPCT). The aims were to determine the extent to which KIS is created in primary care before CSPCT referral; to evaluate KIS completeness at referral and one-month post-referral; and to explore palliative care community nurse specialists' (CNSs) perspectives on the KIS. The findings will provide insights into the extent of ACP for patients at referral to the CSPCT and will outline recommendations from CNSs on how care coordination might be improved.
Methods
This study was a mixed-method service evaluation including case note reviews of new referrals to a hospice CSPCT and semi-structured interviews with CNSs.
Data collection and analysis
Case note review
If a patient has a KIS at CSPCT referral, it is routinely uploaded to the hospice electronic patient record and available for review. At later stages, the KIS is not routinely uploaded but is accessible to the patient's CNS via TRAKcare (InterSystems), an electronic patient record system used by NHS Lothian, and can be viewed to inform clinical care. Over 2 weeks in February 2019, case notes of all new patients referred to CSPCT were reviewed. Where patients had a KIS, these were evaluated to determine which aspects of KIS were documented. Free-text information within the KIS was examined thematically.
Four-weeks post-referral, KIS completeness was re-evaluated alongside each patient's assigned CNS who had access to the latest KIS via TRAKCare. Each CNS was asked whether they considered their patient's KIS appropriately updated following their specialist assessment feedback to the GP, and they described the information that had been updated. This information was noted by the lead researcher (LS) and summarised descriptively.
Interviews
Semi-structured interviews were conducted with CNSs. Interviews explored perceptions of KIS usefulness in community care, KIS quality and methods used to update KIS. Interviews were recorded, anonymised and transcribed verbatim for thematic analysis using open codes (Braun and Clarke, 2012).
Ethics and governance considerations
Approval was obtained from the hospice's research governance group and Caldicott Guardian. As KISs are routinely reviewed by clinical staff at referral, these were accessible as part of the patient notes held by the specialist care provider. Research ethics committee approval was not required as this was a service evaluation.
Results
Characteristics of newly referred patients
In total, 44 new patients were referred during the 2-week period (60% were women and 40% were men). Their mean age was 72 years (range: 25–97 years), and two-thirds (66%) had a primary diagnosis of cancer.
KIS documentation at referral to CSPCT
Some 34 (77%) new patients had a KIS at referral. The majority of these contained information on current and past health conditions (Figure 1). Half stated there was an ACP in place, but only 11 (32%) detailed ACP wishes in writing. One-quarter detailed preferred place of care/death, and seven (21%) mentioned available anticipatory medications. Common themes in the KIS free-text box included details of diagnosis (84%), past medical history (56%) and the patient's social situation (50%).
Figure 1. Number of KIS reports with the mentioned section completed.
KIS content at 4 weeks post-referral
At follow-up, 17 KISs were re-evaluated. Patients who had died (n=8), been discharged from palliative services (n=9), had not yet been assessed due to appropriate triaging (n=7) and whose assigned CNS was unavailable at review (n=3) were excluded from follow-up.
All patients followed up had a KIS, including two new KISs for patients who lacked one at referral. Ten of the 17 KISs (59%) reviewed had been updated by GPs following CNS feedback. The most common updates concerned preferred place of care/death, do not attempt cardiopulmonary resuscitation (DNACPR) decisions and ACP decisions, such as not wanting intravenous medications. Seven had not been updated, but this was considered appropriate by CNSs.
Qualitative data collection
Eleven CNSs participated in semi-structured interviews exploring their perspectives on the KIS. Three themes emerged, which are outlined below.
How KIS is used
Six CNSs interviewed access KISs weekly, three of whom routinely check it prior to meeting newly referred patients. Five access KIS rarely, only for MDT meetings. One deterrent to accessing KIS was that the process is time-consuming, as it is on a different computer system:
‘To get into the system is really slow … puts you off trying to access it.’
(P3)
KIS quality from CNS perspective
Most CNSs felt ACP information, including written notes regarding care and CPR wishes, is the most useful aspect of KIS. However, some CNSs felt that feedback from their specialist assessment was not included in the KIS update. The ACP tickbox within KISs was often considered uninformative as, commonly, there was no specific ACP plan documented:
‘… will have ticked anticipatory care plan in place. And that will be it.’
(P6)
Process of updating KIS
Various opinions were expressed regarding GPs updating KIS on behalf of CNSs. Some acknowledged the difficulty of updating a document with someone else's assessments:
‘A lot of responsibility on a single GP … to make changes to a care plan whenever it has been discussed with someone else.’
(P8)
Most CNSs felt that it would be helpful if they could update KIS:
‘If we are going and having these conversations, then why wouldn't we update that part?’
(P3)
Discussion
This evaluation found that approximately 77% of patients referred to a CSPCT had a KIS at referral. In the weeks following CSPCT involvement, all patients had a KIS, and the majority were considered up-to-date. A previous evaluation of primary care patients estimated that approximately 69% of patients with an advanced progressive disease have a KIS by the time of death, which increases to 80% for people who die with cancer (Finucane et al, 2020). In this evaluation, the proportion was higher. This may be a reflection of ACP discussions being a central focus for clinicians in specialist palliative care settings (Lovell and Yates, 2014).
ACP information was lacking in KISs at referral. Although KISs are generally generated in primary care prior to CSPCT referral, ACP discussions may not have been conducted or documented at this point. This could be attributed to the potentially distressing nature of these discussions (Pocock et al, 2019), GP time restrictions affecting opportunities to have ACP discussions (Tapsfield et al, 2019) or difficulties identifying when to start these discussions (Pocock et al, 2019; Tapsfield et al, 2019).
Ultimately, ongoing communication between CNSs and primary care teams is essential to ensure ACP information is available and up-to-date. The findings highlight the contribution from specialist palliative care providers in documenting ACP information via the KIS. However, the current system in Scotland has drawbacks, as the KIS exists on a separate system to that used by the CSPCT and can only be updated by primary care teams. In this study, nearly half of CNSs interviewed rarely accessed KISs after referral, as they were on a different computer system and could not be directly edited. The qualitative findings suggested that write-access for CNSs would be acceptable to them and could streamline the process for GPs while ensuring the KISs contained detailed ACP sections.
Evidence of the positive impact of electronic care coordination systems, such as the KIS, on ACP is emerging (Huber et al, 2017; Lemon et al, 2018; Leniz et al, 2020). These systems are being prioritised for roll-out in the UK (Department of Health and Social Care (DHSC), 2016), as well as being implemented internationally (Allsop et al, 2017). There is an urgent need for evidence to guide the implementation of these systems (Leniz et al, 2020). Although this study was small scale, the findings suggested that:
- Electronic care coordination systems facilitate sharing and documentation of patient preferences between primary care and specialist services
- Systems that are directly accessible to the CSPCT are likely to be more frequently accessed than those on another platform or computer system
- Systems that can be updated directly by specialist palliative care staff are preferred by CNSs and may result in more timely updates
- Procedures that encourage the CSPCT to routinely review ACP information for their patients are warranted.
Strengths and limitations of the study
This evaluation provides preliminary evidence regarding ACP documentation via an electronic care coordination system on CSPCT referral. The findings suggest that ACPs are updated further following CSPCT referral. While likely, it is possible that updates may have occurred anyway and, without a comparison group, all updates cannot be attributed to CSPCT intervention. Further, it would have been useful to have mapped out each updated KIS section at follow-up. This was not possible due to CNS time constraints, as CNS input was required to access the follow-up KIS. Since this was a service evaluation, the findings are specific to the setting in which data was collected and are not generalisable.
Conclusion
This service evaluation found that the majority of patients had a KIS at CSPCT referral, but that ACP information within KISs was limited. Four-weeks post-referral, all patients had a KIS, most of which contained updated ACP information following CSPCT feedback. Electronic care coordination systems, such as the KIS, facilitate the documentation and sharing of information between care settings. A system allowing CNSs to directly update KIS would be acceptable to CNSs and could potentially help ensure that KIS patient information is comprehensive, up-to-date and optimises clinical decision-making out-of-hours.
KEY POINTS
- The Scottish Key Information Summary (KIS), a shared electronic care coordination system for patients with advanced illnesses, provides access to key patient information for unscheduled health providers to guide clinical decision-making out of hours
- Electronic care coordination systems are being prioritised for roll out across the UK, and evidence to develop effective systems is required
- Most patients had a KIS at hospice referral, but often the anticipatory care plan aspect of KIS was lacking
- Editing access for CNSs and systems that are easily accessible could potentially help ensure that KIS patient information is comprehensive, up-to-date and optimises clinical decision-making out-of-hours
CPD REFLECTIVE QUESTIONS
- Why is it important for healthcare professionals to have access to patient anticipatory care plans or advance care plans?
- What information should a good anticipatory care plan or advance care plan contain?
- How can you ensure that the wider healthcare team is updated on any changes to patients anticipatory or advance care plan?