Approximately 500 000 people die in England each year, and around 40% of these deaths occur in a person's own home or a care home (Public Health England (PHE), 2019). The NHS Long Term Plan (2019) promised to introduce proactive and personalised care planning for everyone identified as being in their last year of life. End of life is defined as the likelihood of the person dying within the next 12 months and also includes those people whose death is expected imminently within days or hours (National Institute for Health and Care Excellence (NICE), 2019). In 2014, a new approach to caring for dying people was developed and published by the Leadership Alliance for the Care of Dying People. One chance to get it right (Leadership Alliance for the Care of Dying People, 2014) presented the five priorities of care for the dying person, an approach which reflects individualised needs and preferences while avoiding the standardised care associated with previous pathways. The five priorities are:
- Recognising that someone is dying
- Communicating sensitively with them and their family
- Involving them in decision making surrounding care
- Supporting them and their family
- Creating an individual plan of care.
The aim of end-of-life (EoL) care is to ‘help people live as well as possible until they die and to help people die with dignity’ (Health Foundation, 2020).
Integrated care community nursing teams provide an EoL care service to patients in Sheffield. A recent Care Quality Commission (CQC) inspection of the trust identified that an evaluation of this service has not been undertaken in recent years. Thus, the aim of the present study was to assess the integrated community nursing team's performance in the delivery of EoL care and identify any improvements that can be made.
Objectives
Patient records were evaluated using a questionnaire to understand how well the service performed against a set of care priorities, namely:
- Advance care planning (ACP)
- Individualised care planning
- Treatment decisions
- Recognition of dying.
Method
Using the local trust policy, the community nursing service initiated work to implement this approach, while acknowledging that patient-centred EoL care was an ethos already embedded in practice. Anecdotally, community nursing teams regard providing EoL care at home as a privilege. A questionnaire was developed by the project team to assess the patient records, using some criteria from the National Community EOLC Audit Tool and an audit tool from mid-Yorkshire (Figure 1). The questionnaire distributed to the community nursing teams was developed around, but not directly measured against as a standard, the abovementioned priorities (ACP, individualised care planning, treatment decisions and recognition of dying).
In 2015, the local clinical commissioning group developed the EoL Care Template for the community electronic record card (SystmOne) to capture these priorities of care in a way that would make the information and conversations easily accessible to other professionals and services. The community nursing team recognised the value of the EoL Care Template being used and rolled this out across the service in October 2015. Therefore, it was essential that the questionnaire evaluated how successfully the EoL Care Template was being used within the community nursing service.
For each community nursing team, a team leader and EoL Care Champion completed the questionnaire on five patient records and returned the file to the project lead. The community nursing teams were provided with the questionnaire on 30 January 2020 with a return date of one month.
Results
Twenty-two of the 23 community nursing teams were asked to complete the questionnaire for five patients who had received or were receiving EoL care. Of the expected 110 patient records to be reviewed, the results of 103 were received, providing a 94% response rate. A decision was made not to include the evening and night service team, as, although they respond to urgent and unplanned EoL care visit requests, the patient remains under the care of and on the caseload of the community nursing day team. Thus, the necessary information would be captured while avoiding the potential of duplication.
Advance care planning
Overall, it is very encouraging that, from 92 of the 103 patient records reviewed, discussions are taking place with patients and/or carers and families with regard to EoL wishes and preferences. From the remaining 11, where there is no evidence of ACP discussions being had, additional comments indicate that this is due to late referrals into the service, where patients are unable to discuss their needs and die very quickly. In addition, in some cases, there was an indication of some cognitive decline or advanced dementia and no appropriate family or carers with which to discuss wishes and preferences.
While scrutinising the responses further, an inconsistent approach to the recording of these ACP discussions became apparent. The project group also questioned if the term ‘care plan’ generated potential confusion for the community nursing teams. According to the Gold Standards Framework, the term ‘advance care planning’ is used to describe the conversation that takes place between the dying person, their families, carers and those looking after them as a way of facilitating the planning and delivery of care. Therefore, an ACP is a document capturing those conversations and demonstrates what matters to the dying person.
A theme emerged within the remaining patients of referring to the information provided within letters and assessments from the local hospice, which may suggest that some ACP is being completed by specialist palliative care nurses, rather than members of the integrated community nursing team.
Individualised care planning
Some 85 patients from the 103 audited had evidence of an individualised EoL plan of care, and all but one of them had been involved in the planning. Further, 91 one of the 103 patients had their preferred place of care and preferred place of death recorded. However, it was found that 23 patients did not die at their preferred location.
Addressing the spiritual and emotional needs of the patient and their family in a sensitive and caring way was evident for 92 of the 103 patients. This is noteworthy as this aspect of EoL care is an integral part of the holistic assessment leading to the development of an individualised plan of care. Overall, the results demonstrated that individualised care planning is being recorded within the EoL Care Template.
Treatment decisions and recognition of dying
For some 56 of the 103 patients, there was evidence that the person might die within the next few days or hours. However, when examining the breakdown of the results further within the comments, it was found that some of the patients were not medically within the final days and hours of their life. It is also supported by the number of patients commencing a T34 ambulatory syringe pump (64 of the 103), and, while it is recognised that an ambulatory pump can be used to provide symptom management at any time, these are predominantly used in the final weeks, days and hours of life (when it is inappropriate or not effective to administer medication via other routes, such as orally).
For 91 patients, anticipatory medications were in place, and 93 had a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) in place. Of these patients, all but one had discussed this with a clinician. It is important to recognise here that the community nursing service does not complete DNACPRs, although they contribute by either facilitating conversations or identifying when one may be required with a GP, for example. Thus, these results also indicate effective collaborative working with primary care.
Discussion
The findings of this audit offered assurance that the community nursing service provides individualised EoL care. This is significant, as it is recognised that increasing both the control and choices available to the dying person improves the EoL experience and yields better outcomes (NHS England, 2020). However, it is important to mention here that the records were scrutinised by the community nursing teams themselves and not an independent auditor. As such, it can be recognised that the responses may be subjective in nature.
Table 1. Questionnaire used to assess whether the End-of-Life Care Template is being followed by the community nursing service
| Choose options from the dropdown box | Additional comments | |
|---|---|---|
| Advance care planning | ||
| Is there evidence that a discussion had taken place with the patient with regard to their end-of-life care wishes and/or preferences? | ||
| If yes, was this documented within the SystmOne End-of-Life Care Template? | ||
| If not, where did you find this evidence? | ||
| Is there documented evidence that the patient had made an advance care plan? | ||
| If yes, was this documented within the End-of-Life Care Template? | ||
| If not, where did you find this evidence? | ||
| Is there documented evidence that the team took into account the contents of the advance care plan when making decisions? | ||
| Is there documented evidence that the advance care plan was reviewed? | ||
| Individualised care planning | ||
| Is there documented evidence that the patient who was dying had an individualised end of life care plan? | ||
| If yes, was the patient and their plan of care reviewed regularly? | ||
| Is there documented evidence that the patient had the opportunity to be involved in discussing the plan of care? | ||
| Is there documented evidence within the individualised end of life care plan of an holistic assessment of the patient's needs? | ||
| Is there evidence that the patient was on the GP Palliative Care Register or discussed at a GP palliative care/clinical meeting? | ||
| Is there documented evidence of the patients preferred place of care being recorded? | ||
| If yes, was this documented within the End-of-Life Care Template? | ||
| Is there documented evidence of the patients preferred place of death being recorded? | ||
| Is there documented evidence of the patients preferred place of death being recorded? | ||
| If yes, was this documented within the End-of-Life Care Template? | ||
| Was the Death Not At Preferred Location completed on the End-of-Life Care Template? | ||
| In your professional opinion were all the necessary agencies notified that the patient was on an end-of-life care plan? | ||
| Is there evidence that the spiritual and emotional needs of the patient and family have been addressed in a sensitive and caring way? | ||
| Treatment decisions | ||
| Was a Do Not Attempt Cardiopulmonary Resuscitation in place at the time of death? | ||
| If yes, was this recorded on the SystmOne End-of-Life Care Template? | ||
| Is there documented evidence that a discussion with the patient regarding cardiopulmonary resuscitation (CPR) was undertaken by a clinician? | ||
| If no, were any of the following reasons documented as to why discussion did not take place?: | ||
| Is there evidence that the patient had anticipatory medication in place? | ||
| If yes, was this recorded on the SystmOne EOLC Template | ||
| Is there evidence that the patient was commenced on a T34 syringe driver pump? | ||
| If yes, is there documented evidence that the reason for this had been discussed with the patient? | ||
| Recognition of dying | ||
| Is there documented evidence of the recognition that the patient might die within the next few days and hours? | ||
| Is there documented evidence that the possibility that the patient may die had been discussed with the patient? | ||
| Is there documented evidence that the possibility that the patient may die had been discussed with the patients family and/or carers? |
Identifying and recording the preferred place of death was found to correlate to the dying person achieving their preference, with those having an unidentified preferred place of death being more likely to be admitted to hospital (Ali et al, 2019). Reflecting on these data, the project team recognised the need to include an option to identify when the preference regarding place of EoL care and death had been met in order to improve the strength of that detail.
A recognition that someone is dying enables prompt action to be taken in line with their wishes and preferences (Leadership Alliance for Care of Dying People, 2014). The EoL Care Template on SystmOne provides a section for recording ACP conversations, but it was only used for 65 of the 92 patients. While this is still an encouraging figure, it has highlighted the need for the community nursing service to continue participating in city-wide work related to improving the recording and sharing of ACPs. In addition there is a potential need to improve the understanding of the terminology across the service via education and training.
With regard to the significant number of patients having anticipatory medications in place, this is extremely positive, not only as recognition of dying but in supporting individualised care. Anticipatory prescribing supports rapid symptom relief and can prevent a crisis that may result in a hospital admission. It is reassuring and encouraging that there is recognition that a person is dying which is acted on as part of the treatment decisions.
Limitations
The 103 patients requiring EoL care reviewed were at various stages of prognosis. This might have been reflected in some of the responses and, thus, would have affected the results. For example, if the patient was not in the final days or hours of life, there would not be a recording at that time of recognition of this.
Conclusion
As integrated and collaborative practices continue to be strengthened across organisations within the community setting (hospices, primary care, CCGs and hospital trusts), ultimately who provides, contributes to or facilitates ACP as part of EoL care may not be important.
Overwhelmingly, this review demonstrated that patients' wishes are being discussed and documented, evidencing that the five priorities of care (Leadership Alliance of Care of Dying People, 2014) are being considered with patients at the EoL being cared for by the community nursing service in terms of recognising someone is dying, communicating sensitively with and supporting patients and their family and involving patients in decision making. However, if the EoL Care Template is not being completed, the plan of care is, arguably, not being effectively communicated across teams and organisations of practice within the wider community. Thus, future action will be focused and targeted on continuing to encourage and improve the use of the EoL Care Template.
Carrying out this audit gave assurance to the community nursing team that the EoL care they are providing is following local and national guidelines. This audit also presents evidence to help assure local stakeholders and the CQC that EoL care is being managed appropriately within the community nursing teams to allow individuals to be treated sensitively and with compassion.
Recommendations
On the basis of the results of this audit, the community nursing service will be encouraged to better implement the EoL Care Template, they will review how many staff members have completed the local online e-learning package for EoL care, and the option of detailing whether the preference for place of care and death was met in the SystmOne Template will be considered.
KEY POINTS
- A set of five care priorities at the end of life has been established for community nurses and other palliative care practitioners to follow
- These include recognition of dying, advance care planning, individualised care planning, and involving patients in treatment decisions
- It is important to intermittently assess the delivery of end-of-life care and to identify any improvements that can be made
- The findings of the audit conducted in this study indicate that the End-of-life Care Template needs to be followed more diligently at the authors' trust
- Reassuringly, EoL care practice does seem to follow the five care priorities, as well as national and local guidance
CPD REFLECTIVE QUESTIONS
- What are your trust's care priorities for end-of-life care?
- Reflect on a patient/family for whom you recently provided EoL care. How did you ensure the national guidelines on EoL care were followed in this case?
- What challenges do you face in meeting the four priorities listed in this paper while delivering EoL care in the community?