End of Life care
This is not just about palliative care in the final days, but about having a series of conversations much earlier after a terminal diagnosis.
RCP president Professor Andrew Goddard
Talking about dying: How to begin honest conversations about what lies ahead
According to a Royal College of Physicians report, Talking about dying, doctors and other healthcare professionals find it hard to talk to patients about dying. The report offers some ‘mythbusters’ to get physicians thinking and offers signposts to tools and educational resources.
The Daffodil Standards are the UK general practice standards for advanced serious illness and end of life care. They include quality statements, evidence-based tools, reflective learning exercises and quality improvement steps, developed by Royal College of GPs and Marie Curie. See EoLC Toolkits below
EoLC Training and e-learning resources
Conversations with patients at end of life are often difficult. Firmley Collaborative & FrontLine Communication have put together a series of YouTube videos to help GPs and HCPs have advanced care planning conversations and discussions about DNACPR with patients and relatives.
End of Life Care elearning – over 160 highly interactive sessions, easily digestible e-learning materials in Assessment, Advance care planning, Communication skills, and Symptom management and training needs assessment tools delivered by e-Learning for Healthcare (e-LfH).
UCL Partners have developed An innovative approach to end of life care education. Each set of materials include a short film, teaching slides and activities to support teaching of end of life care to non specialist staff across healthcare settings.
The Oxford Centre for Education and Research in Palliative Care (OxCERPC) offers an annual programme of study days, courses and conferences to introduce the subjects of palliative care and end of life care and to support continuing professional development some of which may be of interest to primary care staff. See their forthcoming courses.
Katharine House Hospice near Banbury is linked to the Oxfordshire Palliative Care Education Group (OPEG) and offer a range of educational opportunities, including seminars, courses, placements and visits, to doctors, nurses, allied health professionals, care assistants.
The Gold Standard Framework (GSF) is a systematic, evidence based approach to optimising care for all patients approaching the end of life, delivered by generalist frontline care providers. The GSF Centre website provides access to training programmes, a virtual learning zone and a library of tools and resources
Palliative Care Knowledge Zone on the Marie Curie website introduces the knowledge and skills needed to provide high-quality end of life care. It is for generalist health and social care staff who don’t have specialist-level training in caring for people with a terminal illness and the issues associated with end of life care.
Human Rights and End of Life Care workshops from Sue Ryder, open to all staff working in palliative and end of life care, help practitioners use human rights as a practical framework for ethical decision-making and for ensuring compassion and dignity in end of life care.
EoLC Toolkits and useful resources
The Daffodil Standards, developed by Royal College of GPs and Marie Curie, are a blend of quality statements, evidence-based tools, reflective learning exercises and quality improvement steps. An accompanying collection of evidence-based EoLC quality improvement tools include a short animation on how to undertake a retrospective death audit and a range of multi-professional video screencasts.
The RCGP Palliative and End of Life Care Toolkit provides a collection of tools, knowledge, and current guidance for healthcare professionals to support patients nearing the end of life to live well until they die. Includes Top Tips for GPs and Primary Care Clinicians The Last Day of Life, based on NICE guidance ‘Care of dying adults in the last days of life’ (NG31), and Discussion paper about helping GPs to identify end of life patients and plan ahead, The RCN and RCGP End of Life Care Patient Charter which lists the key points GPs should communicate to their patients as well as the resources for patients and those close to them.
Ambitions for Palliative and End of Life Care is the website of the National Palliative and End of Life Care Partnership to support implementation of their Ambitions framework. Many of the resources on this site have been transferred from the NHS IQ and the End of Life Care Facilitators’ Network websites.
Six Steps to Success in End of Life Care in Care Homes. The Six Steps programme aims to enhance end of life care through facilitating organisational change and supporting staff to develop their roles around end of life care. The programme consists of eight workshops which will support and empower the care home representative to implement and embed the Six Steps to Success within their care home.
The Wessex Palliative Care Handbook: a good practice guide (eighth edition, 2014) has been collaboratively developed by the Wessex Palliative Care Physicians, is regularly updated and widely used as a reference source, across Wessex and beyond. Aimed at GPs, community nurses, doctors in training and other hospital staff as well as specialist palliative care teams, it provides checklists for the management of common problems in palliative care. The Handbook is available as an interactive PDF or an e-book for use on mobile devices including Apple and Android tablets and phones.
End of Life Care Planning with Young People with Learning Disabilities and their Families. The University of Surrey have worked with Health Education England to develop an educational intervention to assist formal care-givers engage effectively and ethically in end of life care planning with young people with learning disabilities and their families and friends. The advance ADVANCE toolkit, an easy read summary and video clip are available.
Keep up to date
National End of Life Care Intelligence Network resources and alert are now available from the Palliative and end of life care website.
Last updated: 22 March, 2021