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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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One limitation of the LCP is its usability only in the three days prior to death; this doesn’t sufficiently fulfil the need for proactive care, which should occur much earlier in the illness trajectory. However, it is important that end-of-life care is given unique attention, which the LCP, or other end-of-life ICPs which focus on the last three days of life, can do. They are part of palliative care, which includes the end-of-life phase and thus many palliative care ICPs use the LCP for end-of-life care. A Cochrane systematic review aimed to assess the effects of end-of-life care ICPs (including the LCP) in comparison to usual care or care guided by another ICP (Chan and Webster 2010). The study aim was to focus on the impacts of end-of-life care ICPs on symptom severity and quality of life for the patient, their family and carers, and health care professionals. The authors planned to include randomised controlled trials (RCTs), cluster RCTs and quasiRCTs. The initial literature search identified 920 potentially relevant titles, but no studies met criteria for inclusion in the review. The review concluded that there was insufficient evidence to make recommendations regarding the use of such end-of-life care pathways for the dying. However, the inclusion and exclusion criteria for this study were very stringent, and the study focussed on whether these interventions work.

Furthermore, there are ethical issues associated with RCT designs when focusing on patients at the end-of-life; randomising patients to a study arm that does not include an intervention which many clinicians believe to be effective (Chan and Webster 2010).

The LCP is an inherently complex intervention, with human factors playing an important part that are difficult to control for. The outcome measures in the study were physical symptom severity, memorial symptom assessment, psychological symptom severity, quality of life, and harms, all of which are extremely difficult to assess during the end-of-life phase, especially as the patient can be unconscious or sedated. The traditional RCT design has not yielded the outcomes needed to make informative decisions about end-of-life care ICPs effectiveness or worth.

Studies using research designs which do not match Cochrane review inclusion criteria can however provide informative results - Bailey, Burgio et al. (2005) implemented an end-of-life care intervention in a tertiary care Veterans Affairs medical centre. The intervention included staff education and support to identify dying patients and implement care plans for the last days or hours of life. The study found the intervention resulted in significant increases in the mean number of symptoms documented, the mean number of care plans, opioid medication availability and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. This palliative care intervention improved outcomes for those with end-of-life care needs. Similarly, Veerbeek, van der Heide et al. (2008) investigated the effect of the LCP on the documentation of care, symptom control and communication, in hospitals, patients’ homes and nursing homes.

The study found that in comparison to the baseline period, when the LCP was used the documentation of care was more comprehensive and symptom burden was significantly lower. Thus both studies found that end-of-life ICPs have the potential to improve symptom management. Other studies assessing end-of-life ICPs found improvements in clinical documentation and assessment (Bookbinder, Blank et al. 2005, Luhrs, Meghani et al. 2005, Veerbeek, van der Heide et al. 2008), knowledge of end-of-life care amongst internal medicine students (Okon, Evans et al. 2004), prescription of medications for end-of-life (Bailey, Burgio et al. 2005, Mirando, Davies et al. 2005) and bereavement levels for relatives (Veerbeek, van Zuylen et al. 2008). Whilst these do not provide irrefutable proof of ICPs effectiveness at the end-of-life, they nevertheless present themselves as promising.

The Integrated Care Pathway under study The locality that the primary care based palliative care ICP is implemented in covers a predominantly semi-rural and rural geographical area in the North East of England. The business cases initially proposed in 2008 and 2009 for the ICP by the Locality Practice Based Commissioning Group were developed and delivered in line with the national strategies on ACP and end-of-life care (Department of Health 2008). This strategy encourages all health and social care services to acknowledge and value high quality care in the final years of life. It also emphasises a co-ordinated pathway approach. Key components in the palliative and end-of-life care journey should be: to identify individuals approaching end-of-life; to assess and agree how needs and preferences of patients can be met through use of ACP; well planned and coordinated care; provision of high quality services regardless of location; managing the last days of life; supporting families and carers. The eleven point action plan developed by the locality was as


1. Palliative care registers needed to be developed that were meaningful and

–  –  –

2. Planning (ACP) needed to define patients’ preferences.

3. Capacity to provide home care needs to increase.

4. 20% of deaths in the locality occur in care homes, the care is currently reactive but needs to be proactive (‘care home’ will be used as a collective term to refer to nursing homes, care homes and residential homes, from here on in this thesis.

This is because the data used in analysis does not allow for differentiation between the different types of care homes).

5. Deaths in hospital are at around 47% which is suboptimal.

6. OOH services need to be integrated.

7. Ambulance services need to be integrated.

8. Standards should adhere to the GSF.

9. Data on performance was required which could be feedback to practices.

10. Education and training was needed for all health care professionals using the

–  –  –

11. A pathway must be created through commissioning to allow capacity & alternatives in providing palliative care.

In line with the End of Life Care Strategy (Department of Health 2008), the aim of the ICP business case (prompted by the eleven point plan) was to provide proactive and patient centred care. This was via an improved range of services which result in the early identification of those with terminal conditions, the opportunity to discuss and plan care, thus resulting in high-quality palliative and end-of-life care across all terminal conditions, regardless of diagnosis. Previously in the locality, palliative care had focused on people with cancer diagnoses and palliative care registers were poorly

developed and not used in a purposeful way. This was due to a number of reasons:

terminal cancer diseases are easier to identify, cancer trajectory has a more predictable course (than in non-cancer conditions), and cancer registers were available in some practices that allowed these patients to be closely monitored. The premise of the ICP developed was that patients with life limiting illnesses should be identified early and at a point in their illness when active treatment is no longer likely to extend their life, but while their need for medical, nursing and social care input is relatively low. These patients should then be placed on the practice palliative care register, which should trigger the offer of ACP. This ACP should result in shared decision making about preferences for the end-of-life, which can then be documented, thereby encouraging choice, implementing planning and making home, care home and palliative care unit deaths more viable. This ICP is thus an implementation of the three key concepts identified in the palliative care policies: proactivity, patient centeredness and shared decision making.

Once the ICP was designed a large multidisciplinary education event was held, at which the theory and practicalities of ACP in relation to end-of-life care were discussed.

Feedback regarding the proposed ICP and documentation was collated and utilised to refine the ICP, meaning that it was tailored to local needs and therefore there was a strong sense of ownership of the ICP from those who were going to implement it. The event was attended by sixty individuals representing members of primary health care teams, secondary care, voluntary sector organisations, patients and carers. The ACP document designed by the locality was passed to the Medical Protection Society for medico-legal comment. Further development of the ICP through feedback from the various stakeholders was also sought. The local urgent care services and local ambulance service were both informed about the ICP.

Initially, twelve primary care practices agreed to implement the ICP in April 2009. Two additional practices joined at a later date, thus the ICP involved a total of fourteen primary care practices. This meant that the population covered increased from 60,000 in 2009 to 78,000 in 2010. A Local Enhanced Service (LES) was developed to encourage GP practices to take part in the project. This LES rewarded practices for setting up the necessary systems, allocating more time to visiting patients in their own homes, for attending education sessions and for agreeing to return practice information and feedback questionnaires. Each GP practice was paid an initial sum of £750 to sign up to participate in the ICP. The ICP is still in place and still coordinated by a multidisciplinary steering group that has service user involvement.

The new ICP for those with life limiting illnesses requiring palliative care involved six newly commissioned services: advance palliative care registration, palliative care incentive scheme, ‘Hospice at Home’ care (from a local registered charity), three community palliative care beds in a local care home, two sessions of medical cover per week for these beds, support from a local charity to provide complementary therapies to those in the community palliative care beds. The three community palliative care beds were commissioned as an alternative to hospital admission, to widen choice and to offer a pragmatic hospice, as all hospice provision prior to this was approximately eighteen miles away from the locality. A wide range of appropriate services is pivotal in maintaining patients’ quality of life (Ellershaw and Ward 2003, Agar, Currow et al.


Unfortunately the two-year pilot was not fully funded to continue. The third sector organisations (Hospice at Home charitable organisation and complementary therapy local charity) and the three community palliative care beds at the local palliative care unit were not initially re-commissioned. However, public campaigning led to the recommissioning of two of the palliative care beds with reduced funding for these beds;

medical cover for these beds; the charitable organisation providing Hospice at Home support had its funding cut from pilot level but would remain above baseline for the following year. Advance palliative care registration and the palliative care incentive scheme were continued. This highlights how the ICP is not a static intervention; it evolved in response to local commissioning stimuli. The palliative care incentive scheme includes several interventions: preference discussions, ACP, OOH notifications, MDT meetings, the traffic light system of wellbeing (adapted by the ICP founder for the locality from the GSF), use of anticipatory medication, and use of the LCP. All of which are described in detail below. Additionally, Palliative Care Quality Visits (PCQVs) to GP practices were carried out by the founder of the ICP, to ensure ICP diffusion and implementation. Thus the ICP has multiple components and is implemented by many different people in different job roles and is inherently complex.

Advance palliative care registration Palliative care registrations consist of a confidential list in each GP practice, which details the patients who require palliative care. A patient should be considered as requiring palliative care if they have a life limiting illness and active treatment is no longer likely to extend their life. Health care professionals from the locality assess this by using ‘the surprise question’, adapted from the GSF as part of their prognostic indictor (Department of Health 2008, The National Council for Palliative Care 2009, The National Gold Standards Framework Centre 2009, NHS North East 2012). The surprise question asks, “Would you be surprised if the patient were to die in next six months?” Use of the palliative care register has resulted in early identification (proactive care), planning and co-ordinated care nationally (Omega: the National Association of End of Life Care 2010). Ideally, advance palliative care registration should occur when the patient’s need for medical, nursing and social care is still relatively low and whilst their symptoms are not severe. By strengthening practice palliative care registers, patients who require palliative care can be identified and health care professionals can plan with the patient in a more effective and efficient way for the future when their care needs increase. Palliative care registrations should trigger preference discussions and ACP.

Preference discussions and advance care planning Preference discussions are carried out using shared decision making and elicit patients’ preferences for care when they have been identified as requiring palliative care. As part of the palliative care incentive scheme, these preference discussions should be recorded formally. At the start of this PhD the advance care plan was one document that was developed by the locality. Throughout data collection this has changed, according to the local Deciding Right (2012) documentation. ACP is now used as an umbrella term and refers to the process of documenting preferences which can include the use of four independent documents: the advance statement, the DNACPR form, the advance decision to refuse treatment (ADRT) and the emergency health care plan (EHCP) or Personal Welfare Lasting Power of Attorney (PW-LPA) including health (all described below). ACP is now centred on shared decision-making, with these documents as an outcome of a preference discussion between a patient and a health care professional.

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