NHS England: Actions for End of Life Care: 2014 - 16
This document – Actions for End of Life Care: 2014 – 16 – sets out NHS England’s commitments for adults and children. It is one component of a wider ambition to develop a vision for end of life care beyond 2015. This can only be achieved in partnership with all those in health and social care. The 2008 Strategy managed to reverse the upward trend of people dying in hospital. We now need to ensure that living and dying well is the focus of end of life care, wherever it occurs. This is the challenge: together we can and must achieve it.
More care, less pathway - personalised plans with patients and their families
Following the recommendations of the Neuberger review, More Care, Less Pathway (2013), addressing concern about the use and implementation of the Liverpool care pathway, Leeds has discontinued the Liverpool Care Pathway and has moved to personalised care plans developed with patients and their families.
In response to the review, the Leadership Alliance, led by Dr Bee Wee, have published One Chance To Get It Right (June 2014), recommending the introduction of 5 principles for end of life care, which primarily focus on:
- Recognition that the patient is dying and communicating about dying
- Involvement of families in decision making
- Advance care planning and capacity
- Professional responsibilities
- Development of a personalised care plan that addresses the patients and families wishes, food and drink and use of sedatives and pain relief.
Leeds will be working with providers to address the recommendations of the Leadership Alliance.
Leeds Strategic Framework for Adult Palliative and End of Life Care
The fourth Leeds Strategic Framework for Adult Palliative and End of Life Care provides a clear direction for developing and improving palliative care and end of life services, across the city.
The aspiration for Leeds is to increase the percentage of patients who are cared for and die in their preferred place of care. This will mean reducing the number of deaths in a hospital setting, and increasing those at home.
Our vision is that people who have palliative care needs and who die in Leeds have what for them and their carers constitutes a positive, quality, personal experience.
Service delivery framework for integrated end of life care
District nursing teams work closely with joint care management teams across Leeds Community Healthcare NHS Trust to deliver palliative care to their patients who are suffering from a life limiting illness and wish to be cared for at home. This ensures that patients can confidently choose to live at home until they die, assured that highly trained, skilled professionals will deliver the care they need.
End of life care strategy
The Department of Health published this document in July 2008. This document provides guidance and recommendations to organisations that plan and commission care for those people who are approaching the end of their life. This is regardless of the illness which has caused their ill-health.
The document demonstrates the Department of Health’s commitment to raising the standards of care for this special group of patients. It recognises that many patients wish to be cared for in their preferred place of choice, which may be their own home. It also pays particular attention to the support for informal carers, and to the provision of education and support for professionals to deliver a consistent and high standard of care.
Download the end of life care strategy.
Preferred priorities for care (PPC)
The preferred priorities for care document (also known as PPC) can help you prepare for the future. It gives you an opportunity to think about, talk about and write down your preferences and priorities for care at the end of your life. You do not need to do this unless you want to.
The PPC can help you and your carers (your family, friends and professionals) to understand what is important to you when planning your care. If a time comes when, for whatever reason, you are unable to make a decision for yourself, anyone who has to make decisions about your care on your behalf will have to take into account anything you have written in your PPC.
Sometimes people wish to refuse specific medical treatments in advance. The PPC is not meant to be used for such legally binding refusals. If you decide that you want to refuse any medical treatments, it would be advisable to discuss this with your doctors.
Remember that your views may change over time. You can change what you have written whenever you wish to, and it would be advisable to review your PPC regularly to make sure that it still reflects what you want.
The gold standards framework (GSF)
The Gold Standards Framework (GSF) is a community based programme to improve the organisation and quality of care (enabling a gold standard of care) for all people nearing the end of their lives. The aim is to aspire for the ‘best’ for ALL patients nearing the end of life, whatever their diagnosis, stage of illness or choice of where they wish to be cared for.
Implementation of the Gold Standards Framework across the 118 GP practices within the Leeds Primary Care Trust began in 2005 bringing together the GP, District Nurse, Clinical Nurse Specialist (Palliative Care), Community Matron, on a regular basis, to discuss the needs and preferences of their most seriously ill patients and the needs of those carers caring for them. A full nursing and medical assessment takes place where needs, symptoms, preferences and significant, important issues for the patient and carer are identified. Planning care around patients’ needs and preferences enables, where possible, patients to live and die where they choose.
Electronic Palliative Care Co-ordination System (EPaCCS Leeds Palliative Care)
To improve coordination of patient care at end of life and to support care planning, work on an electronic palliative care coordination system (EPaCCS) has been ongoing since 2009. An EPaCCS is an electronic summary of up-to-date patient information, which includes patients preferences about end of life care, to inform decision-making and care delivery at the point of care across service boundaries. It is for patients in the last months / years of life who have consented to have their data shared.
EPaCCS is now being rolled out to GP practices and community nurses across the city and the respective hospice-based community specialist palliative care teams are also using it. The Out of Hours GP service also has access to EPaCCS.
The following links / information can be used to aid decision making and care for patients at the end of life.
Some of these links can only be accessed from a NHS linked computer. You may also need to scroll down the webpage to access the document required.
- Identifying patients with life-limiting illness and planning supportive and palliative care in Leeds
- Supportive and palliative care indicators tool (Leeds)
- Advance decisions to refuse treatment: a guide for health and social care professionals. Please also see factsheet 3 and support sheet 4 available from the same link.
- Planning for your future care: a guide
- Preferred priorities for care (PPC)
A tool for discussion and recording EoLC wishes
Leeds Health Needs Assessment
This health needs assessment (HNA) aims to lay the foundations for the Leeds Clinical Commissioning Groups (CCGs) to commission services which meet these needs and contribute to people in Leeds experiencing good end of life care (EoLC). The HNA aims to answer the question “are we providing the best EoLC services possible with the resources available?” The HNA will inform the Leeds CCG EoLC commissioning strategy due to be published in March 2014.