Art & science The synthesis of art and science is lived by the nurse in the nursing act JOSEPHINE G PATERSON COLLABORATIVE SERVICES SHOW POSITIVE OUTCOMES FOR END OF LIFE CARE Jennifer Garside and colleagues describe how the introduction of a package for acutely unwell individuals with poor prognosis has transformed provision and improved the experiences of patients and their families Correspondence jennifer.garside@worcsacute. nhs.uk Jennifer Garside is end of life care facilitator at Worcestershire Acute Hospitals NHS Trust Teresa Barley is end of life care facilitator at Worcestershire Acute Hospitals NHS Trust Valerie Wellings is education and learning facilitator at St Richard s Hospice, Worcester Date of submission e 4 2013 Date of acceptance tember 2 2013 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines nm.rcnpublishing.com Abstract The authors outline the benefits of participating in the Transforming End of Life Care in Acute Hospitals Programme. The article describes the introduction at Worcestershire Acute Hospitals NHS Trust of the amber care bundle, an approach used in hospitals when clinicians are concerned that patients are acutely unwell and their potential for recovery is uncertain. The bundle is supported with staff education and carer feedback using the VOICES questionnaire, which carers or relatives fill out post-bereavement. The authors also discuss the potential to measure outcomes to indicate quality, by linking the amber care bundle quality audit and the adapted VOICES questionnaire to demonstrate the impact of the introduction of the amber care bundle. Keywords Amber care bundle, end of life care, Transform Programme, VOICES questionnaire THE END of life care strategy (Department of Health (DH) 2008) states that about half a million people die in England each year and that most deaths (58 per cent) occur in NHS hospitals. The strategy describes the profile of end of life care in the NHS and social care services as being low, resulting in wide variation of the quality of care delivered. Shipman et al (2008) describe how most of those who die are cared for primarily by generalists in generalist settings. The NHS End of Life Care Programme 2004/09 (www.endoflifecare.nhs.uk) formed a significant part of the document, Building on the Best: Choice, Responsiveness and Equity in the NHS (DH 2003), the aim of which is to make high quality care available wherever patients are at the end of their lives. The Building on the Best document suggests the introduction of end of life care tools such as the Preferred Place Of Care, Liverpool Care Pathway (LCP), and the Gold Standards Framework, which identify that those approaching end of life span different sectors and settings. It would seem sensible, therefore, to have an integrated approach to planning and service delivery across health and social care settings. Since 2009, the Worcestershire health economy has developed a cohesive county-wide approach to delivering end of life care. Its Palliative and End of Life Care Network, referred to in this article as the Worcestershire Network, established nine work-stream groups. These support the delivery of the ie Curie Delivering Choices Programme, which aims to enable people, regardless of diagnosis, to live well until the end of their lives by encouraging staff from all sectors to engage in end of life care and help patients and their families to make informed choices and plan for the future. Members of the work-stream groups include professionals working across health and social 16 ember 2013 Volume 20 Number 7
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Art & science acute care 18 ember 2013 Volume 20 Number 7 care, from chaplaincy and the voluntary sectors, as well as service users. The network has overseen the development and implementation of a commissioning strategy, and it has led on the implementation of initiatives centred on elements of care with which members have experience and influence. Examples include the addition of recovery uncertain to the medical electronic discharge summary, to communicate advance care planning to GPs. Another is the development of a joint out-of-hours GP and West Midlands Ambulance Service communication form, to ensure the same information is available across services to co-ordinate and enhance care at the end of life. One of the Worcestershire Network work-stream groups focuses on the acute hospital setting. After publication of the End of Life Care Strategy (DH 2008), which set out a framework for local implementation, Worcestershire Acute Hospitals NHS Trust (WAHT), supported by the Health Education West Midlands education and quality team, created two new end of life care facilitator posts. These are held by nurses with a background in specialist palliative care, namely the authors. Development of a trust strategy for end of life care followed, based on national quality markers and measures for end of life care with overarching goals, quality markers and key performance indicators. Best practice Worcestershire Acute Hospitals NHS Trust is spread over three sites within 40 miles of each other, with end of life high impact action groups at each site. The groups share the same agenda, but each invites local professionals to lead on, communicate and develop agenda items relevant to each site. Methods of incorporating palliative and end of life care education in daily practice throughout the trust included embedding the LCP, introducing the VOICES (views of informal carers evaluation of services) questionnaire (Box 1) and analysing feedback to produce an action plan for education and training for all staff grades. The government recently announced withdrawal of the LCP from practice by next y after an independent review recommended phasing it out amid reports of poor care (Independent Review of the Liverpool Care Pathway 2013). However, like many other acute trusts, WAHT plans to continue using an approach based on LCP principles, to guide best practice and develop individualised end of life care plans until NHS England and NHS Improving Quality issue further guidance on how to ensure that patients in the last days of life, and their families, receive the best possible care. In ch 2012, WAHT signed up as a phase 1 pilot site for the Transforming End of Life Care in Acute Hospitals Programme, which is part of the National End of Life Care Programme (NEoLCP) (2011, 2012). Also known as the Transform Programme, it identifies five enablers for improving care in the final year of life, which are: Advance care planning. The electronic palliative care co-ordination system (EPaCCS). The rapid discharge home to die pathway (RDHDP). The amber care bundle, a simple approach used in hospitals when clinicians are concerned that a patient may only have a few months left to live. The LCP for dying patients. When WAHT joined the pilot, the trust was already using some of the enablers in end of life care, which meant that it could benchmark its progress to date and analyse what was needed to improve. Development of an electronic end of life care discharge pathway with associated resources, and its introduction to ward multidisciplinary teams, clinicians and clerks, have been successful means of offering more comprehensive discharge packages, enabling a smoother passage between acute and community services. Participation in the Transform Programme has also provided access to an innovative end of life care education programme developed by St Christopher s Hospice, London, called Quality End of Life Care for All (QELCA), which helps generalist nurses improve the experiences of dying patients and their relatives or carers (Bryan et al 2008). The programme is delivered locally at St Richard s Hospice in Worcester over five days, concurrent with the introduction of the amber care bundle across Box 1 The VOICES* questionnaire The questionnaire is a self-completed survey for bereaved relatives or carers. It excludes cases of patients who died in emergency departments and cases of sudden death, because the questionnaire relates to patients admitted as inpatients. The national end of life care strategy (Department of Health 2008) advocates the use of patient- and carer-reported outcome measures. The VOICES questionnaire enables providers to determine and promote best practice at end of life. * VOICES views of informal carers evaluation of services
Box 2 Core metrics for wards collected during the Transforming End of Life Care programme pilot Amber care bundle Indicator: ward implementation of amber The ward has not implemented amber Plans are in place to implement amber The ward has an education and training programme to implement amber The ward is able to demonstrate implementation of amber The ward has embedded and sustained the use of amber Red Amber Yellow Blue Green Baseline Midpoint Endpoint WAHT. The amber care bundle supports acutely unwell patients whose potential for recovery is uncertain. The bundle includes reviewing patients treatment or medical plans, and involving patients in decisions about their care. The QELCA programme and the experiences it offers, such as observing the approach to care of palliative patients and the hospice ethos, has inspired and motivated nurses to bring about changes in their own areas. Environment is a topic that features in ongoing action learning sets and the changes made include provision of quiet spaces and carers rooms. Emerging themes, such as communication and end of life competencies, are also being fed in to education and training programmes. Individually, these initiatives can make a difference to care, and the effectiveness of their combined strengths is demonstrated below. Measuring benefit The Transform Programme (NEoLCP 2011) collects two types of metrics. The first set concentrates on an organisation s readiness for change based on ward metrics and alignment to hospital quality markers from the National End of Life Care Assessment (ELQuA) tool. The ELQuA is an online tool developed by the National End of Life Care Intelligence Network (2011) to help organisations picture how end of life care can be delivered and look at services in the context of similar organisations locally and across the country. The second set of metrics relates to process, and centres on the adoption and introduction of the five enablers. As part of the Transform Programme, information was gathered over one year across all 25 hospitals taking part in the pilot. Data were recorded at baseline, midpoint and at the end of the pilot, and included how many patients received care supported by each enabler. The results are rated by colour for each participating hospital, so a plan for service improvement can be developed and to assess progress over time. Box 2 shows, for example, how the enabler relating to the amber care bundle is rated. arate metrics are collected by the amber faculty at Guy s and St Thomas NHS Foundation Trust (2012) in London. The faculty supports trusts participating in the Transform Programme or adopting the amber care bundle as an enabler by hosting teleconference calls, running workshops and offering informal support for enquires. The faculty has also produced a heat map for participating hospitals that indicates ward areas with more than five deaths each year and shows end of life activity, such as the percentage of deaths on a ward, emergency readmissions within 30 days and percentages of patients supported by the LCP. Amber audit Amber quality audits monitor progress of the amber care bundle in an organisation and involve a review of patients notes. Initially, amber audits were carried out quarterly, but are now undertaken every six months. At WAHT, samples were randomly selected from two patient cohorts: those who had died in hospital, and those who had died within 100 days of discharge and had been supported by the amber care bundle. Data collection was conducted by the authors and a member of medical staff. The quarterly amber audit reports provide an evidence base about the effectiveness of the ember 2013 Volume 20 Number 7 19
Art & science acute care 20 ember 2013 Volume 20 Number 7 intervention. They also include recommendations and action plans with graphs that compare quarterly results with baseline data (Figure 1). Demonstrable benefits of the bundle include: Discussions that recovery is uncertain. Planning for future care. Death in preferred place of care demonstrated by a reduction of readmission rates among patients supported by the bundle. Perceived reduction of deaths in an acute setting. VOICES questionnaire An adapted VOICES questionnaire was designed at WAHT to link with the amber care bundle quality audit to demonstrate the effects of introducing the bundle. Questions include: Was the patient treated with dignity and respect? How well were pain and suffering alleviated? Were the patient s needs and preferences assessed and acted on? A covering letter to explain the purpose of the questionnaire and a prepaid envelope are included in the pack given to relatives by the bereavement office. The questionnaire return rate is between 41 per cent and 68 per cent over each quarter. The trust s clinical audit department forwards questionnaires with negative comments, or those where relatives or carers ask to be contacted, to the authors. The questionnaires are then given to the appropriate teams for investigation and action. Responses are addressed in the VOICES report action plan for the trust. To support use of the amber care bundle, the questionnaires also ask: While your relative was in hospital, was the possibility that he or she may not recover discussed with you? Was there ever a discussion about where your relative wanted to be cared for in their last days? In addition to site-wide and trust-wide evaluation, data are analysed for each of the wards that use the amber care bundle. Data from the 2011/12 VOICES questionnaires were analysed for 29 wards before the introduction of the amber bundle, to help identify how it improved patient outcomes. It is impossible to verify whether individual patients were supported using the amber care bundle at any point because they are no longer alive, but analysis of the questionnaires can help wards identify areas to target in terms of education and improvement. Amber wards can review their data quarterly or annually, and generate their own charts and actions on a quarterly basis. The trust can also review all wards that have implemented the amber care bundle to obtain a trust-wide perspective. Evaluation Measures of quality, reliability of processes and indicators of outcome are assessed through audit of casenotes. Examples from the amber care bundle audits carried out between ober and ember 2012 include: 82 per cent of relatives said they were aware that their relative s recovery was uncertain. 91 per cent of patients who received care that was supported by use of the amber care bundle had had a patient and, in some cases, also a family meeting. 1.5 per cent of patients who received care supported by the amber care bundle were readmitted to hospital as emergency cases after discharge. All patients had a Do not attempt cardiopulmonary resuscitation form completed. Figure 1, produced by the Transform Programme, suggests that, since WAHT joined the scheme in 2011 and launched the amber care bundle in 2012, subsequent wider adoption of the scheme has resulted in fewer inpatient deaths. The reason for this could be that more patients were supported to be discharged to their preferred places of care. Discussion Since il 2013, a new organisation, NHS Improving Quality, has taken the lead on service improvements across the health service, subsuming the roles of organisations such as the National End of Life Care Programme. Worcestershire Acute Hospitals NHS Trust was one of the 25 trusts that took part in the first-wave pilot for the programme in 2012. The following year, a second pilot involving a 24-strong cohort started, so that one third of trusts in England are now signed up to participate. The NHS Improving Quality board has agreed that two workstreams related to end of life care will continue over the next 12 months: The Transform Programme. The EPaCCS. Worcestershire Acute Hospitals NHS Trust remains in the Transform Programme, raising the profile of the trust s work on the five enablers nationally. The trust presents its developments and data on its implementation of the amber care bundle at conferences and events, and supports the monthly amber network teleconferences that include the first and second cohort pilot sites. The trust is
Figure 1 Worcestershire Acute Hospitals NHS Trust: deaths in hospital 2008/12 250 200 Number of deaths 150 100 50 Key: --- Trust chart median --- England chart median Trust value England trust mean value With the permission of the Health and Social Care Information Centre 0 2008 2009 2010 2011 2012 Source: Public Health England (2013) believed to be the first to collect routine feedback from bereaved relatives, via the adapted VOICES questionnaire, and is being used as an examplar in a national complaints review. Next steps The trust s amber care bundle audit schedule has changed in line with the national amber faculty minimum data set. At the pilot stage, quality sampling of the two cohorts of patients, those who died in hospital and those who died within 100 days of discharge, taken from all amber wards across the trust, were conducted quarterly, but now they are carried out every six months. In 2013/14, the hospital intends to refine its approach, with ward-based champions reviewing at least five patient records a month using a simplified version of the quality audit tool to ask whether the right patients are being identified for management using the amber care bundle. The local quality audits will look at the suitability of the management plan for individual patients using the amber care bundle s interventions. Guidance notes that include national and local information will ensure standardisation of data collected to reduce bias. A further improving palliative care amber care bundle has been negotiated with the clinical commissioning groups, and future QELCA programme funding has been secured by St Richard s Hospice through Health Education West Midlands, now that the initial funding from the Transform Programme has expired. Health Education West Midlands is planning to develop and introduce a local version of the National Intelligence Network ELQuA tool for end of life reporting. This will include measures for the quality and safety standards used by the National Institute for Health and Care Excellence (2011) and the Care Quality Commission (2010) to avoid replication. The trust will continue to participate in the Transform Programme. Its next priorities are education and piloting the county-wide advance care planning and advance decision to refuse treatment documents, as well as the development of EPaCCS with the support of the Worcestershire Palliative and End of Life Network. Conclusion The appropriate use, and combining, of local and national tools and services have led to better end of life care in an acute hospital setting. Positive outcomes have been achieved and demonstrated for patients requiring end of life care and their families and carers. One response to the VOICES questionnaire in 2012 noted: All that needed to be done was done. The care ember 2013 Volume 20 Number 7 21
Art & science acute care was excellent. When doctors told us that dad was likely to die, staff ensured that my dad was nursed in a side room and we spent the last days and hours together as a family. Alignment of the five enablers against the six steps outlined in the End of Life Care Strategy has provided a cohesive pathway of care and a new way of working. The six steps encompass the care of, and support for, patients, carers and families, and are: Step one: discussions as end of life approaches. Step two: assessment, care planning and review. Step three: co-ordination of care. Step four: delivery of high quality services. Step five: care in the last days of life. Step six: care after death. This alignment has aided the adoption of the amber care bundle in WAHT at ward level and provided a focus for corporate, departmental and ward-based education. The enablers are now built into the education and training curriculum, particularly induction and mandatory training for all clinical staff. The Transform Programme states that a range of positive outcomes might be observed, including: Improved quality of care. More care in the home. Improved patient experience. Reduction in emergency attendances Improved staff satisfaction. And, since the introduction of the amber care bundle, some of these have already been achieved in WAHT. Online archive For related information visit our online archive and search using the keywords. Conflict of interest None declared References Bryan L, Rogers A, Manns J et al (2008) Quality End of Life Care for ALL (QELCA): An Innovation in End of Life Care Education. St Christopher s Hospice, London. Care Quality Commission (2010) Essential Standards of Quality and Safety. Care Quality Commission, London. Department of Health (2003) Building on the Best: Choice, Responsiveness and Equity in the NHS. DH, London. Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of their Life. DH, London. Guy s and St Thomas s NHS Foundation Trust (2012) The AMBER Care Bundle. www.guysandstthomas.nhs.uk (Last accessed: tember 26 2013.) Independent Review of the Liverpool Care Pathway (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway. Department of Health, London. National End of Life Care Intelligence Network (2011) National End of Life Care Assessment (ELQuA) Tool. www.elcqua.nhs.uk (Last accessed: tember 26 2013.) National End of Life Care Programme (2011) Transforming End of Life Care in Acute Hospitals Programme. National End of Life Care Programme, Leicester. National End of Life Care Programme (2012) Transforming End of Life Care in Acute Hospitals-the Route to Success How to Guide. National End of Life Care Programme, Leicester. Public Health England (2013) Analysis of Linked Hospital Episode Statistics: ONS Mortality Data. Health and Social Care Information Centre, London. National Institute for Health and Care Excellence (2011) QS13 Quality Standard for End of Life Care for Adults. tinyurl.com/niceqs13 (Last accessed: ober 1 2013.) Shipman C, Gysels M, White P et al (2008) Improving generalist end of life care: national consultation with practitioners, commissioners, academics and service user groups. British Medical Journal. 337, 7674, 848-885. 22 ember 2013 Volume 20 Number 7