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GP mythbuster 38: Care in advanced serious illness and end of life
We have updated this mythbuster to include the latest research and recommendations for end of life care in England.
GP practices have a unique role in coordinating and giving good quality end of life care.
When we inspect, we consider how practices deliver and co-ordinate end of life care as part of key lines of enquiry (KLOE) R2.8, R2.9 and R2.10.
Good Medical Practice guidance (General Medical Council) describes patients ‘approaching the end of life’ as those who are likely to die within the next 12 months. This includes patients with advanced progressive incurable illness; frailty and co-existing conditions; existing conditions with a risk of dying from a sudden acute crisis; and life threatening acute conditions caused by sudden catastrophic events.
When we inspect
Questions we ask are formed by research and good practice guidelines. Here they are listed against the domains in one of the voluntary standards (from RCGP & Marie Curie Daffodil Standards).
Good practice domain
We will ask:
Professional and competent staff
Do you deliver training for staff in care for advanced serious illness and end-of-life?
Carer support – before and after death
How do you support the family and carers of patients at the end of life and in bereavement?
Seamless, planned, coordinated care
How do you use the palliative care register and team meetings to improve coordination and communication with others involved in a person’s care? (This includes proactive referrals to services)
Quality care during the last days of life
Care after death
General Practice being hubs within compassionate communities
How do you deliver services, co-ordinate and make them accessible to take account of the needs of different people, including in residential homes?
Good practice development programmes
Aspiring to a higher standard of care
The RCGP & Marie Curie Daffodil Standards: UK General Practice Core Standards for Advanced Serious Illness and End of Life Care outline eight core domains in which GP practices can look to attain high standards of care.
RCGP and Marie Curie report that peoples’ top priorities at end-of-life are to be free from pain and to be with the people they love. They would also prefer to be cared for and die in familiar surroundings. People experience better care and death when their needs are identified early and their care is properly coordinated - involving those important to them and regarding their personal care preferences.
- sign up to a free online tool to self-assess progress in these domains, and
- set actions to support ongoing development.
The aim is to meet the standards within a three-year period. If you choose to sign up, please share the evidence with our inspection team.
Going for Gold
The Gold Standards Framework (GSF) aims to improve the quality of care experienced by people; coordination across boundaries and outcomes enabling people to live well and die well, reducing inappropriate hospitalisation.
GSF encourages practices to
- identify the right patients in the last year of life to deliver proactive care
- assess needs with person-centred advance care planning discussions
- plan care in line with patients’ preferences to reduce hospitalisation and enable more people to die at home
Their ‘Going for Gold’ and ‘Silver’ primary care programmes provide workshops, distance learning and filmed sessions for the multi-disciplinary team.
The Gold programme is built on the principle of ‘whole team’ ownership for all those in contact with patients and practices develop a local action plan leading to their own end of life care protocol. Practices monitor progress using key outcome ratios and audit care using after death analysis to stimulate organisational change. Practices may apply for GSF gold accreditation and a quality hallmark award. GSF Frontrunners identifies examples of good practice
Research and reports
A different ending: addressing inequalities in end of life care
Our report A different ending, examines different people’s experiences of end of life care across England.
It highlights many examples of good practice, but shows that the quality of end of life care for some groups is still not good enough. Everyone approaching the end of life should receive high quality, personalised care, and GPs have a key role in making this happen.
GP practices should ensure that everyone with a life limiting progressive condition has the opportunity to have:
- Early and ongoing conversations about end of life care in the last phase of life as part of planning their treatment and care, in a way which responds to their individual communication needs.
- A named care coordinator who is the lead professional who coordinates services around them; this could be the GP, district nurse, specialist nurse, care coordinator or any other professional most appropriate to the person’s needs.
One percent of the population will die every year. The Dying Matters campaign encourages GP practices to find their one percent. GP practices should have a palliative care register to support end of life care. This should include people with conditions other than cancer, and people with frailty and dementia who may be in the last year of life. Dying Matters also recognises the vulnerability of equality groups including black and ethnic minorities, and the Gypsy and Traveller population.
Involving patients and those close to them
The BMA’s review into end of life care and physician-assisted dying found many excellent examples of end-of-life care provision, but also highlighted variation in people’s experiences of care. It recognised the importance of early conversations with patients about the end of life, and their care preferences, as well as the need to involve and support the patient’s family and loved ones in their end of life care.
Five priorities for care of the dying person
The Leadership Alliance for the Care of Dying People, which included CQC, agreed five priorities for the care of the dying person:
- The possibility that a person may die within the coming days or hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
- Sensitive communication takes place between staff and the person who is dying and those important to them. Training in communication, person centred approach and symptom control and services available is needed to improve care for all.
- The dying person, and those identified as important to them, are involved in decisions about treatment and care. GPs should support people to make choices about their preferred place of death.
- The people important to the dying person are listened to and their needs are respected.
- Care is tailored to the individual and delivered with compassion – with an individual care plan in place. GPs should coordinate making and following an individualised care plan. Care plans should ideally be owned by the patient but recognised in all settings.
Find out more
You may find the following organisations and guidelines useful to look at in more detail.
- Care of Dying Adults in the Last Days of Life (NICE Guideline)
- Dying Matters
- End of life care for adults (NICE Quality Standard)
- Gold Standards Framework: primary care training programme
- BJGP Editorial: New UK General Practice Core Standards for Advanced Serious Illness and End of Life Care
- BJGP Editorial: Population-based, person-centred end-of-life care: time for a rethink
- GSF Frontrunners
- One chance to get it right (Leadership Alliance for the Care of Dying People)
- RCGP/Marie Curie Daffodil Standards pilot
- RCGP/Marie Curie Daffodil Standards briefing
- RCGP Palliative and End of Life Care Toolkit
- Six Steps to Success in End of Life Care
- Treatment and care towards the end of life: good practice in decision making (GMC guidance)
- Last updated:
- 29 April 2021