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«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»

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Regardless of the outcome of ACP (advance statement, DNACPR form, ADRT or EHCP) it should be a process of voluntary discussion and review to help an individual anticipate how their condition might affect them in the future and identify their preferences in different situations (NHS North East 2012). It is important to note that all of the outcomes from these documents are invalid whilst the person retains capacity for those decisions, and none of these documents can be used with individuals who do not have capacity according to the Mental Capacity Act (Justice 2007, NHS North East 2012). Furthermore, an automatic and rigid approach to ACP should be avoided; the patient should be willing to engage in ACP for it to be successful and to avoid distress.

 Advance statement The advance statement is a document that is written by the patient to clarify and document their wishes, feelings, beliefs and values about their future care (Deciding Right, 2012). This document is not legally binding but will be taken into account by health care professionals and carers if the person is to lose capacity in the future.

 Do Not Attempt Cardiopulmonary Resuscitation form The DNACPR form is a document that a person can have if they do not wish to have CPR. It is the most frequently used document in ACP and has the advantage of simplicity as it only addresses one decision. However, this also means that the document is inflexible in complex situations (NHS North East 2012). The form needs to be from the Deciding Right documentation to be accepted by the North East Ambulance Service and must be present in the person’s home and valid (in date, signed and witnessed). CPR decisions should only be made for those whom they are appropriate for; those who have capacity for that decision where an arrest is anticipated and CPR could be successful.

 Advance Decision to Refuse Treatment The ADRT is a legally binding document that states the refusal of a specific treatment regarding a person’s future care if they should lose capacity to make this decision. To be legally binding it must be valid and applicable to the circumstances. Because of the time needed to evaluate the validity and applicability of an ADRT, they are not always supportive in acute emergencies that require immediate treatment, but must be adhered to when time allows (Deciding Right, 2012). The ADRT has now replaced the Living will.

 Emergency Healthcare Plan The EHCP is a care plan covering the management of an anticipated emergency (Deciding Right, 2012).

 Personal Welfare Lasting Power of Attorney including health A PW-LPA including health is also an outcome of ACP. A PW-LPA including health acts according to a patient’s best interests, which is the bringing together of health or social care professionals’ and the individual’s understanding and opinion of the proposed care. For those who do not have capacity the MCA (2007) provides information on how a best interest decision should be made. It can be used in life sustaining treatment decisions, but only supersedes the ADRT if it was appointed after the ADRT was made by the individual and if the conditions of the PW-LPA including health cover the same issues as stated in the ADRT (Deciding Right, 2012).

Home and hospice care Three community palliative care beds were commissioned as part of the ICP in a local care home as an alternative to hospital admission, to widen choice and to offer hospice care in a palliative care unit, as the nearest hospice prior to this was approximately eighteen miles away from the locality. Two medical cover sessions per week for these beds were also commissioned with support from a local voluntary organisation to those in the community palliative care beds. Increased capacity to support home care was also commissioned from a Hospice at Home organisation. This charity includes a team of registered nurses and health support workers who fill gaps in care, provide respite sitters and night care. The ICP ensured the appointment of a lead nurse to assure that clinical governance issues were being identified and managed.

Out of Hours notifications OOH notifications are alerts that are sent to the local GP OOH service to make them aware that a person is on the palliative care register.

Traffic light system The traffic light system of wellness was created by the locality to encourage patient centred, appropriate and timely care, taking inspiration from the GSF needs based coding that consists of five colours. The locality traffic light system has only three colours: green, amber and red. A patient is considered within the green section of the system when they are thought of by health care professionals as being at a point where active treatment is no longer likely to extend their life, even if they appear to be relatively well and have few symptoms. The amber section of the system is for patients who have begun to deteriorate. The red section of the system is for the final days and hours of life. The traffic light system also acts as a prompt to health care professionals to ensure that additional measures such as facilitating access to financial benefits (green), providing anticipatory medication (amber) and initiation of the LCP (red) are implemented (when data was collected the LCP was nationally used, currently the patient or their family decide on the care the patient receives. See the section above on the LCP, p.43).

Multidisciplinary Team Meetings A MDT within the ICP consists of professionals who work in the community and the GP practice. A MDT meeting will involve the discussion of palliative care patients identified using the palliative care register and manage complex problems associated with palliative care guided by the traffic light system of wellness. A palliative and endof-life care MDT team meeting should occur regularly to discuss progress with patient care and treatment options. Most practices include this as part of their general clinical meeting.

Anticipatory care medication This is medication that can be used to aid end-of-life symptom control; it is provided proactively prior to actual need so that these medicines can be administered to the patient if required without delay, especially at night, at weekends or over bank holiday periods. Anticipatory medication can be provided for patients who are currently being cared for at home, in a care home or in a community palliative care bed and can be administered subcutaneously by health care professionals for nausea, sickness, pain, respiratory secretions or agitation (Pellett 2009).

The Liverpool Care Pathway for the Dying Patient In the UK, the LCP was created to transfer the high standard of hospice care to secondary care (Ellershaw, Foster et al. 1997). The LCP is a standardised method to monitor the care of a dying person, considering their physical, psychosocial and spiritual needs (Veerbeek, van Zuylen et al. 2008). As previously discussed, the LCP is now being phased out in the NHS as a result of the government’s acceptance of an independent report (Neuberger, Aaronovitch et al. 2013). However, data collection for this study began in February 2012, thus preceding the publication of this report.

Therefore this thesis will refer to the LCP and report outcomes related to it.

Palliative Care Quality Visits – Continuous Quality Improvement PCQVs promote CQI and are carried out by the ICP’s founder. These clinical governance visits consist of a visit to the GP practices’ MDT meetings to feedback data, discuss the practice’s performance, discuss how the practice staff would manage a fictional palliative care patient from diagnosis to death, talk about difficult issues experienced when using the ICP and identify and provide potential solutions for common problems. Thirteen out of fourteen GP practices involved in the ICP have received a PCQV. Additionally it allows for insight into how each individual GP practice interprets, adapts to and uses the ICP.

The service delivered in the locality and evaluated in this study qualifies for the title of ICP in all domains but that of it being one document. The ICP facilitates the introduction of multidisciplinary guidelines into routine practice and is based on clinical experience from recently treated patients with the same condition (Kitchiner and Bundred 1996). Members of the health care team using the ICP may stray from it, but this must be justified clinically. This encourages adherence to the ICP and its supporting national guidelines therefore decreasing variations in the care that is provided (Kitchiner and Bundred 1996). The ICP has a founder who developed and facilitated the introduction, implementation, professional education and review of patients’ progress.

The founder also analysed variations from the ICP implementation modes in order to make appropriate revisions, ensuring it had flexibility to integrate best practice exemplars (Kitchiner and Bundred 1996). Furthermore, the ICP under study meets the criteria stated on the ICP key elements checklist, developed by Croucher (2005) and detailed above (p.41). The creation of this ICP also avoids the ‘tick box’ criticisms that some ICPs face, such as the LCP (Stocker and Close 2013).

This concludes the description of the ICP and its component parts. The next section focuses on the current literature surrounding ICPS in palliative care.

Evidence of Integrated Care Pathway effectiveness in palliative care While end-of-life care is concerned with the last days and hours of life (Lunney, Lynn et al. 2003), palliative care focuses on "the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement" (Chan and Webster 2010, World Health Organisation 2014). Palliative care ICPs are less visible in the literature than end-of-life ICPs (such as the LCP), due to the unpredictable nature of palliative care and variability in diagnosis and prognosis. Several searches of the literature databases CINAHL (CINAHL 2013) and Web of Knowledge (Web of Knowledge 2013) were conducted to identify palliative care ICP evaluations. The core terms ‘palliative care’, ‘service*’, ‘pathway*’, ‘integrated care pathway*’, ‘preferred place of care’, ‘home death*’, ‘communit*’, and ‘evaluat*’ were entered either singularly or in combination. Titles and abstracts were screened for original research with adult palliative care patients in Western contexts evaluating an ICP, service or pathway implemented by primary care or a care home. The following discussion is based on these literature searches, snowballing searches of bibliographies and reference lists as well as RSS feeds of relevant journals.

Smith (2012) found that the palliative care needs of patients with advanced heart failure were not being adequately addressed in the locality through use of a baseline audit of services. The audit included the number of patients who had been referred to specialist palliative care services, had discussions around anticipatory care planning, had a documented preferred place of care and had a documented actual place of death. A MDT process mapping event highlighted issues with the current service provision and identified the aims and scopes for the project: the development of a palliative care pathway for end-stage heart failure patients, collaboration between clinicians, managers, commissioners and patients to enable patient choice and access to palliative care services both in hospital and the community. A steering group was established including clinicians, managers, patient representatives, ambulance service representatives, local palliative care teams and the cardiac network. Secured funding allowed a palliative care clinical nurse specialist to work collaboratively on the service with the heart failure nurse specialist. Outcomes of this collaboration were joint visits to patients and an increased understanding of job roles. Several tools were created for the new service.

The GSF (The National Gold Standards Framework Centre 2009) was used to develop a ‘cause for concern’ trigger tool that aided community heart failure nurses to identify patients with advanced diseases who may require palliative care. This is similar to the surprise question used in the ICP under study. The health care professionals in the study could then discuss these patients who they were concerned about at the newly established advanced heart failure multidisciplinary forum, with a view to improving patient care and reducing hospital admissions. A patient and carer assessment (PACA) tool was developed from the GSF (The National Gold Standards Framework Centre

2009) for use by community heart failure nurses to facilitate holistic assessment. This tool also contained referral criteria for specialist palliative care. An aide-mémoire was developed to trigger conversations with patients and assist symptom management or end-of-life care. Out of Hours (OOH), GP and Ambulance Service palliative care or end-of-life forms were used to highlight identified patients to the services. A regular collaborative cardiorespiratory and palliative care nurses meeting was established that included teaching sessions as a forum to improve communication and discuss complex cases. A red folder containing relevant information for all of the services involved in the patient’s care (when being cared for in the community) was left in each patient's home.

Finally, the heart failure nurse specialist assumed the role of key worker, liaising with other health care professionals involved in the patient’s care.

The introduction of these tools into clinical practice was expected to improve coordination between acute and community clinicians and palliative care nurses. A second audit (of the same criteria as the first) executed eighteen months post implementation identified: improved access to palliative care for advanced heart failure patients; improved choices at the end-of-life (more patients dying in their preferred place of care); provision of holistic heart failure service spanning referral to palliative care and then end-of-life. The main difficulties highlighted within this study were the challenge of working collaboratively across services and job roles, and ensuring patients’ wishes were communicated to all relevant health care professionals. However, this study highlights that improvements in communication and multidisciplinary collaboration have resulted in better access to palliative care services for patients and more choice with an increased number of patients dying in their preferred place of care.

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