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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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This research has highlighted important findings for the locality, some of which have already been fed back and acted upon, and for palliative care in primary care and the community in general. The findings surrounding implementation, shared decision making, patient centred care, and proactivity are informative, transferable and identify important issues that need to be addressed within practice and the academic literature.

The goal of palliative and end-of-life care should be to have good quality of life before a good death. When a person has a terminal disease and time to digest their prognosis, a good death should be planned, personalised, symptom controlled, peaceful and holistically assessed with needs met. This ICP attempts to do this in an organised process, with positive outcomes increasing since its implementation. It operationalises attempts to break down barriers to improve palliative and end-of-life care for care providers, patients, and their relatives.

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Appendix 1 – Guidance on use of the Liverpool Care Pathway for the Dying Patient Dear Colleague,

Liverpool Care Pathway (LCP):

End of Life Network Regional Response You will be aware that the Neuberger Review has recommended the ‘phasing out’ of the Liverpool Care Pathway (LCP) and its replacement by End of Life Care Plans that will be condition-specific. The Secretary of State has accepted this recommendation. This letter is intended to update practitioners on the current situation and offers guidance on the management of patients through this transition.

While accepting the need for change we must all be careful that patients continue to benefit from high standards of care at the end of their lives.

The national and regional guidance is clear that the "proper" use of the Liverpool Care pathway (or its equivalent) should continue until new care planning tools are introduced. As an example, St Oswald's hospice is actively involved in the evaluation of one such care planning tool, though will continue to discharge patients on the LCP where this is appropriate.

The enclosed guidance is intended to provide practical support in the use of the LCP at the present time. It is understandable that patients and their relatives will have questions and concerns about the pathway and advice is offered in this regard.

From a clinical point of view, this does not represent any change from what has been seen as good practice for a number of years.

We are aware that use of the LCP - or its equivalent - now varies significantly across the region and so it is particularly important that good communication is part of any transfer or handover of care.

Thank you for all your continued hard work in this difficult area. Yours sincerely

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Acknowledgements: this regional statement is largely based on the advisory communications developed in Newcastle Hospitals NHS FT, Northumbria NHS FT with North Tyneside CCG, City Hospitals Sunderland, and South Tyneside NHS Foundation Trust whose support is greatly appreciated.

End of Life Group Guidance The first priority is to maintain the excellent standards of care that tools such as the Liverpool Care Pathway, have enabled. The correct use of the Liverpool Care Pathway - or its equivalent - continues to be endorsed both nationally and regionally until such time as new care planning tolls are available.

1) One of the criticisms of care at the end of life included in the Neuberger Report is the failure of staff adequately to inform patients and families that the patient is believed to be dying; families in distress may not understand nuances so it is important to communicate the message that death is likely over the next few hours/days explicitly, and to record this conversation in the case notes. We see lots of examples of good practice in this regard during our audits of end of life care, so do keep up this difficult but good work

We suggest therefore that whether you are using the LCP or not:

When the realistic possibility of the patient’s death within hours or days is realised by the caring team, a senior clinician should make this possibility known to the patient (if appropriate) and to the patient’s family/carers (unless permission is explicitly declined by the patient). The conversation must be recorded in the

patient’s notes, and both the conversation and the record should include:

• Time, date and names of participants in discussion

• That the patient is sick enough to die/dying appears inevitable (as appropriate) and how death might be expected to occur

• That patient (if applicable) and family/carers had an opportunity to ask questions

• That care will be based on best comfort care as described by the LCP (possibly alongside resuscitative measures if there is a possibility of reversing the deterioration to

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• If family do not accept that the patient is dying, the clinician has explained the basis for that clinical judgement. This may include acknowledging that diagnosis of dying is an art rather than a science, thus sharing any uncertainty.

2) The symptom management guidelines contained in the LCP that include prescribing of safe starting doses and careful titration of drugs to achieve best possible symptom relief with least possible side effects, should be followed regardless of whether the paper LCP document is in use. Advice on the use of palliative care drugs can be found in the North of England Cancer Network Palliative and End of Life Care guidelines at http://www.gppalliativecare.co.uk/files/north_england_cancer_network_palliative_care_guidelin es_feb_09. pdf The effects of drugs being used to provide symptom relief, whether intermittently or by infusion, should be explained to patient (where appropriate) and family/carers. Families should be warned if sedation is a possible consequence of comfort drugs used for eg breathlessness or anxiety.

When symptoms do not settle quickly, or a prescriber would like advice for any reason, the palliative care team should be consulted as usual.

3) Any decisions made in advance e.g. ADRT, (Advance Decision to Refuse Treatment), DNACPR (Do Not Attempt Cardio Pulmonary Resuscitation), LPA (Lasting Power of Attorney), EHCP (emergency health care plan) must be identified, actioned, documented and shared with all members of the patients team in line with local policy and the Mental Capacity Act 2005.

4) A decision regarding current and any future investigations, treatments and medications has been made in partnership with the patient. Where this is not possible the ‘Best interests’ process should be followed as set out in Deciding Right which can be found at: http://www.cnne.org.uk/end-of-life-care---the-clinicalnetwork/Decidingright/plusresources

5) Any as required medication or equipment needed has been ordered and is in place.

6) For all dying patients there should be regular assessment and management of symptom control and comfort measures.

7) Patients and their families should be communicated with regularly to ensure their needs are being addressed and that they know what is happening.

8) All dying patients need a regular multidisciplinary review, including the senior clinician to re-assess the situation and make sure all their needs are being met.

The decision to remain on the LCP or other documentation using the LCP principles must be reviewed and documented regularly.

9) Offering oral fluids where the patient can swallow and good mouth care is an important part of managing comfort.

10) All dying patients and their families must have the provision of psychological, social and spiritual support.

11) Following death the relative/carer must be supported in their understanding of what to do next and the patient’s death should be communicated to all appropriate services.

12) For those patients, families or organisations that choose not to use the LCP, medical and nursing care plans should be documented on the normal paper/ electronic systems. Staff need to ensure that exactly the same assessments, communication and regular reviews take place that would have been done on the LCP, to make sure that dying patients receive optimal care.

Please note that NEAS will no longer accept someone being on the LCP as a surrogate DNACPR form and so all patients discharged on the LCP where resuscitation is not appropriate will need to have a regional DNACPR form completed.

Appendix 2 – Dalkin, Jones et al. (2012) Appendix 3 Invitation letter 9 for practices to provide their MIQUEST and death audit data Version 2

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Your practice is invited to take part in this research study.

We would like you to provide your GP practice’s MIQUEST and death audit data. We are undertaking research into the new Palliative Care Integrated Care Pathway in [the locality]. It is a study funded by NHS North of Tyne Primary Care Trust and Northumbria University.

This study is part of Sonia Dalkin’s PhD at Northumbria University which investigates the new palliative care system in [the locality]. It hopes to find out new and interesting things about the system, including how it works, and who it works for (for example, patients, family, carers, GPs, nurses). It will also help the system improve itself, therefore improving palliative care as the study is taking place. This research is important as its overall aim is to inform and improve palliative care practice on both a local and national level so that individuals have open and easy access to the supportive care they need, which will ultimately lead to a peaceful death.

I would like to invite you to take the time to read the Information Sheet included with this letter. This will give you more information about the study and what you would do if you participated. If you would like to participate once reading the information sheet, please complete the consent form and email it back to sonia.dalkin@northumbria.ac.uk. As one of the researchers in this study I can be contacted if you would like to find out more information or ask questions. My contact details are at the end of this letter and in the information sheet.

If you have decided you do not want to take part in the study, you do not need to do anything.

Thank you for taking the time to read this letter.

Dr. Bill Cunningham, GP and Chair of the Palliative Care Partnership Contact Details [Address, home and mobile phone number, email address] Appendix 4 Information Sheet 9 - Information sheet for practices to request MIQUEST and death audit data Version 2 Understanding integrated care pathways in palliative care – context, approaches, outcomes.

[A Research Study] Information Sheet Dear Practice Manager, We would like to invite you to take part in this research project. Before you make a decision about taking part, please take the time to read the following information carefully and carefully and discuss this request and the study with GP colleagues in your practice.

By taking part, you will be contributing to a local study that aims to make a real difference to life limiting illness and palliative care. This will be done through identification of pathway mechanisms that contribute to a successful outcome in an Integrated Care Pathway (ICP). This could then improve the quality of palliative care delivered in [the locality], and the rest of the county.

What is the purpose of the study?

[The locality] has created a new ICP which provides individuals who have life limiting illness with access to supportive palliative care including the best symptom control, shared decision making about treatment and generally increased choice about care, leading to a peaceful death with an individual’s needs fully met. This research aims to find out how the ICP works. For example, does it encourage better communication between patients and GPs, or better planning and co-ordination? We would also like to hear from patients, family members, carers and health professionals, in a variety of ways, about their experience of the ICP.

Why has the practice been invited to take part in the study?

You have been invited to take part as you have been identified as a GP practice in [the locality] using the life limiting illness and palliative care ICP, and providing MIQUEST and death audit data.

Does the practice have to take part?

No, taking part in this study is voluntary and you do not have to take part. We would like the practice manager to give consent on behalf of the practice. If you decide you would like to take part, we will ask you to reply to this email in order to confirm your consent to us utilising the MIQUEST and death audit data from your practice.

If you take part and decide that you have changed your mind and no longer wish to be involved you can stop taking part and withdraw at any time. You do not need to provide a reason. There will be no detrimental effects on the practice and your patients will still have access to services on the palliative are pathway.

What will happen to the data if I consent to the study using it?

If the practice consents to the use of its MIQUEST and death audit data, simple statistics will be performed on the data sets. This will allow the generation of knowledge such as the amount of individuals dying in their preferred place, and whether there is a significant difference between the amount of individuals on the palliative care register, in comparison to last year. If you consent to the practice MIQUEST and death audit data being used we would like the practice manager to reply to this email (email address: sonia.dalkin@northumbia.ac.uk) to confirm this and attach the completed consent form (attached to this email).

Dr. Bill Cunningham is a member of the research steering group and will therefore ensure that all data is used appropriately and the individuals performing analysis on the data will have the ability to use it effectively.

What will be the cost of taking part?

There will be no financial cost to taking part. Additionally, this will not take any of your time; you will just provide the data.

How might taking part affect the practice?

The practice will not be required to spend any time with the researchers. They will simply be asked to give consent for their data to be used, similar to its current use by NHS North of Tyne PCT.

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