Palliative and End of Life Care Toolkit

As a patient nears the end of life, a holistic approach is recommended. This approach involves early identification of those likely to be in the last few months of life, discussion of end of life issues with patients and those close to them and provision of high quality care. The process continues after death with support for those left behind as well as reflective practice and audit for the practice team.

Current policy best practice

The following resources may be used to determine if a patient is nearing the end of life, and give recommendations of how treatment should be tailored to their specific requirements.

• RCGP Personalised Care Planning (185 KB PDF) - The general principles for palliative and end of life care
• Top Tips for GPs and Primary Care Clinicians The Last Day of Life (254 KB PDF), based on NICE guidance 'Care of dying adults in the last days of life' (NG31)
• Macmillan Top Tips Guide to supportive and palliative care meetings
• The Golden Standard Framework (GSF) Proactive Identification Guidance provides trigger questions and guidance for initiating end of life support.
• Supportive and Palliative Care Indicator Tool is a guide to identifying people with one or more advanced conditions, deteriorating health and at risk of dying for assessment and care planning
• The RCN and RCGP End of Life Care Patient Charter lists the key points GPs should communicate to their patients
• The NHS Route to Success series (now archived) was a series of guides which assists GPs to tailor care for different groups of individuals based on their personal circumstances
• Holistic needs assessment for patients (formerly known as the SPARC tool)
• Discussion paper about helping GPs to identify end of life patients and plan ahead
• Implementing the RCGP and RCN patient charter (clinical resources and guidance for practices)
• Scottish best practice: End of Life guidance and Building on Progress

Clinical treatment guidance

The following resources provide best practice guidance for clinical treatment of a patient nearing the end of life.

• Royal College of Nursing Nutrition and Hydration Advice
• Palliativedrugs.com provides essential independent information for health professionals about drugs used in palliative and hospice care
• NICE Guidance
• SIGN Guidance regarding control of pain for adults with cancer
• Regional NHS Guidelines for symptom management in palliative care
• Paediatric Palliative Medicine Formulary Dosing information to support prescribing in paediatric palliative care
• Basic symptom control in paediatric palliative care A key clinical tool for treating a wide range of symptoms experienced by children with life-limiting conditions
• Palliative Care Guidelines developed by a collaboration of UK Cancer networks, and the Welsh Palliative Care Implementation Group
• Scottish Palliative Care Guidelines

Communicating with patients and those close to them

Current legislation promotes frequent detailed communication between healthcare professionals and patients, their families and others. These tools may be used to communicate with your patients and their support network.

• Top Tips Communication skills for GPs - Communication skills are crucial for effective care planning and avoiding complaints at the end of life
• Information prescription service, the NHS tool giving full background information, case studies and prognosis for conditions
• Resuscitation Council UK guidelines on completing a DNACPR form
• DNACPR form for Wales
• National Council for Palliative Care (NCPC) Difficult Conversations booklets to inspire confidence to talk about end of life wishes
• Shared decision making discussion paper 
• Working with informal carers: How GPs can improve the quality of life for informal carers

Current knowledge sources

Legislation and knowledge relating to end of life processes is often changing. The following resources provide ongoing forums and updates in which healthcare professionals may keep abreast of current knowledge.

• Register to receive monthly Transforming EoL newsletter
• National End of Life Care Intelligence Network email alerts
• Palliative Care Wales

Quality Improvement

To access shared learning networks to assist you in applying practical QI methodologies to better treat this clinical area, join our QI Ready platform.

Patient resources: Planning ahead

These resources may be shared with patients who have been diagnosed as likely to die within the next 12 months. They provide information for the patient to plan ahead and decide on their care pathway.

• Making advance decisions to refuse treatment
• Dying well at home
• Planning for your future care (now archived)
• Good Life, Good Death, Good Grief Encouraging open discussions about death and planning ahead in Scotland
• End of Life Care guide NHS Choices
• Advanced care planning in 5 simple steps. A video to help ensure people receive the care they want when they need it.
• Planning Ahead: My treatment and care (Compassion in Dying, 2018)

Resources for those close to a dying patient

The following resources are appropriate to share with informal carers and those close to a patient who is dying. These resources aim to support individuals affected by the end of life process happening to those close to them.

• Dying Matters - Finding help locally 
• Winston's Wish Online resource for bereaved children
• What to expect when someone important to you is dying A guide for carers, families and friends of dying people
• Talk CPR Online resources including the Talk CPR videos and website, co-designed by patients and carers in Wales

Resources and guidance for patients and carers

• ‘Find a hospice’ online directory
• ‘Tell me about hospice care: an introduction to hospice care and how to access it’ booklet. The new edition will be available at: https://bit.ly/2lCEyzQ
• What to expect when someone important to you is dying: a guide for carers, families and friends of someone who is dying.
• Planning your future care: a guide

Clinical resources and guidance for practices

• Dementia and end of life care Community of Practice 
• Ewing G and Grande GE. (2018) Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change. London: Hospice UK.  and available soon as preferred link at: https://bit.ly/2JJeapl

With the demise of the Liverpool Care Pathway, there has been much activity and collaborative working between groups involved with end of life care. Current national reports and legal guidelines for healthcare professionals to follow when caring for a person nearing end of life are found in this section.

• One Chance to get it Right: Priorities for Care of the Dying Person
• Mental Capacity Act 2005
• Dying without dignity Investigations into parliamentary complaints
• The Tracey report is a key case detailing lack of communication with families when making Do Not Attempt Cardio-Pulmonary Resuscitation decisions
• More Care, Less Pathway Independent review recommending the phasing-out of the Liverpool Care Pathway
• Summary: Priorities of care for the dying person
• GMC Guidance
• Royal College of Physicians: Improving End of Life care
• Health and Care Professions Council: Standards of conduct, performance and ethics
• Care Quality Commission end of life care myth buster How the CQC will look at end of life care and the role of the GP practice during their inspections
• Ambitions for Palliative and End of Life Care A national framework for local action 2015-2020
• A Different Ending end of life care review published by the Care Quality Commission examining inequalities in care, particularly with certain groups in society
• On the brink: the future of end of life care A report by major third sector organisations highlighting lack of choice and inequalities in care at the end of life
   

Training resources to help fulfil CPD and revalidation requirements.

Further study and learning modules for practitioners

As well as reflective practice within local palliative care meetings, such as a practice Gold Standards Framework (GSF) meeting, clinicians are also able to access study days, online learning modules and post-graduate qualifications.

• eLearning modules covering end of life care for all healthcare professionals
• Princess Alice European Certificate in Essential Palliative Care
• Macmillan LearnZone a variety of free learning resources, online courses and professional development tools
• Royal College of Physicians and Surgeons of Glasgow: Palliative Care eLearning packages

Videos

These videos can be used to as a guide for clinicians, and include testimonials and advice from people with lived experience.

• Autism Spectrum Conditions: End of Life Care and Accessing Healthcare Services [MP4 video file] A YouTube guide for clinicians made in partnership with Marie Curie.

Audit

Clinicians and practices may carry out their own audits as part of the GSF meetings and to fulfil their Care Quality Commission obligations. Online tools are also available to help meet this requirement.

• The After Death Analysis audit tool (subscription is required to access this tool)
• NICE clinical audit tool for use of opioids in palliative care

What is the RCGP and Marie Curie Daffodil Standards?

The Daffodil Standards are a blend of quality statements, evidence-based tools, reflective learning exercises and quality improvement steps.

The Standards offer a structure, enabling practices to be proactive organisations in which continuous learning and quality improvement steps are an integral part of caring for people affected by Advanced Serious Illness and End of Life Care.

The Daffodil Standards can be accessed for free at: www.rcgp.org.uk/daffodilstandards

By signing up to the Daffodil Standards, your practice has taken an important step towards improving end of life care. Practices can register now to receive a welcome pack. Your Daffodil Standards welcome pack will include notebooks, pens, posters and leaflets for you and your team, as well as the Daffodil Mark, which can be displayed to highlight the practice's commitment to excellent end of life care and support for people with advanced serious illness.

Following the phasing out of the Liverpool Care Pathway (LCP) in 2014, new guidance for approaching a dying person was issued by the Leadership Alliance for the Care of Dying People. The current guidelines make the dying person the focus of care in the last few days and hours of life and exemplify the high-level outcomes that must be delivered for every dying person. The way in which care varies is relative to the holistic needs of the individual, and the setting in which they are being cared for.

Developed in partnership with the Clinical Innovation and Research Centre, the guidance and resources within the Palliative and End of Life Care toolkit reflect current guidelines, and provide a toolkit that general practitioners may refer to when working with a patient who is nearing the end of their life.

• The RCGP Position Statement on Palliative and End of Life Care
• Electronic Palliative Care Co-ordination Systems (EPaCCS) provide a shared locality record for health and social care professionals
• Public Health England’s National End of Life Care Intelligence Network for commissioning information
• RCGP commissioning guidance in end of life care 
• Shaping bereavement care specific to Scotland 
• Data from National End of Life Care Intelligence Network
• PHE Fingertips comparative information presented for each Government Office Region, Strategic Clinical Network, clinical commissioning group and upper and lower tier local authorities