Palliative and end of life care in general practice

To demonstrate capabilities associated with the extended role, we have taken the five areas of capability described in the RCGP curriculum as a starting point. These are based around the GMC's generic professional capabilities framework. Later in the framework, we will build on these capabilities in relation to the extended role.

Being a GP

1. Knowing yourself and relating to others
2. Applying clinical knowledge and skills
3. Managing complex and long-term care
4. Working well in organisations and systems of care
5. Caring for the whole person, wider community and the environment

The RCGP defines a GP as follows:

A GP is a doctor who is a consultant in general practice. GPs have distinct expertise and experience in providing whole person medical care whilst managing the complexity, uncertainty and risk associated with the continuous care they provide. GPs work at the heart of their communities, striving to provide comprehensive and equitable care for everyone, taking into account their health care needs, stage of life and background. GPs work in, connect with and lead multidisciplinary teams that care for people and their families, respecting the context in which they live, aiming to ensure all of their physical and mental health needs are met.

Palliative care is defined by the World Health Organisation as an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-limiting illness, usually progressive. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems whether physical, psychosocial or spiritual. The term ‘end of life care’ usually refers to the last year of life. This framework covers palliative and end of life care.

Palliative and End of Life Care (PEoLC) forms an integral part of the work of GPs and primary health care teams. Around 1% of people on a GP list will be coming towards the end of their life and as the general population ages, with increasingly complex health needs, managing the last few months of life has become more complicated, demanding more time and input from the multidisciplinary team. GPs help identify patients potentially in the last year of life and review their care needs via practice end of life register meetings; GP involvement includes:

• supporting advance care planning discussions where appropriate, helping patients and those close to them consider what is important regarding their ongoing treatment and care 
• ensuring appropriate changes in focus of treatment are made, including structured reviews of medications and medical interventions 
• assessing the needs of deteriorating and dying patients  
• supporting community teams in care planning  
• prescribing anticipatory or ‘just in case’ medication to manage symptoms 
• supporting patients to die in their preferred place of care.

GPs will often have a longstanding relationship with patients and those close to them, which supports end of life decision-making. GPs are central to coordinating appropriate person-centred treatment and care, in liaison with district nursing, community therapy, care agencies and community palliative care. 

The RCGP defines a GP with Extended Role (GPwER) as:

A GP with a UK licence to practise, who is maintaining a primary care medical role, but undertaking an activity that is beyond the scope of general practice and requires further training.

Extended roles are typically undertaken within a contractor setting that distinguishes them from standard general practice and involve an activity offered for a fee outside the care provided to the registered practice population. GPwERs often receive referrals for assessment and treatment from outside their immediate practice and undertake work that attracts an additional or separate medical indemnity fee.

• RCGP guide to GP Clinical Extended Roles, 2021 (PDF file, 440 KB)

What the role does

The GPwER PEoLC will bring the skills of being a general practitioner to the specialty of Palliative and End of Life Care, building on their experience of practising holistically, dealing with complexity and uncertainty and therefore enhancing patient care. Demand for PEoLC is set to increase rapidly as more people live for longer with multiple and complex conditions. New models for delivering PEoLC and integrating primary, secondary and third sector services are required to reduce pressures on the NHS and fulfil patient preferences regarding place of death. The importance of ensuring the dying patient and those close to them are properly cared for and supported is highlighted in several national reports:

• Cicely Saunders International - You matter because you are you: an action plan for better palliative care 2021 (PDF file, 344 KB)
• Marie Curie - In and out of hospital. Emergency hospital admissions and A&E attendances in the last year of life in England 2021 (PDF file, 1.5 MB)
• Marie Curie Better End of Life 2022 - Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers 2022 (PDF file, 1.3 MB)
• Marie Curie Better End of Life Briefing 2021 (PDF file, 1.3 MB)

Delivering comprehensive PEoLC services requires integrated working between palliative care and primary care, drawing on the knowledge and skill and expertise of both specialties. The GPwER is an innovative role drawing on the best of primary and palliative care.

A GPwER PEoLC will work as a senior clinician across primary care and the palliative care multidisciplinary team, to deliver exemplary care in any setting (community, hospice and hospital) to all patients and those close to them requiring support from palliative care services. They are expected to work autonomously with the palliative care service, contributing to clinical service delivery, service development, education, quality improvement, audit and research. This role is intended to complement and work with existing roles in palliative care services (for example medical and nurse consultants, advanced practitioners), to support the delivery of new models of care, spanning primary and palliative care, to best meet population needs. By maintaining a primary care role, GPwER PEoLC doctors will support team working and help to up-skill clinicians working in primary and palliative care settings.

This role will treat adult patients with palliative and end of life care needs. Although some GPs are involved in the palliative care of children, this is out of scope for this framework, which is for the GPwER working with adult palliative care services. It is recognised that there is a population of patients supported by paediatric palliative care services that are living longer and transition to adult services; GPs play an important role in managing this transition and interested GPs may want to develop expertise, in collaboration with local services.

Current estimates suggest that approximately 75% of people approaching end of life may benefit from palliative care: 

• Etkind S et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017 May 18;15(1):102. doi: 10.1186/s12916-017-0860-2. 

By 2040, annual deaths in England and Wales are projected to rise by 25.4% (approx. 160,000 people), a trend that has been accelerated by the COVID-19 pandemic, with cancer and dementia being the largest drivers of need.

GPwER PEoLC is likely to work alongside existing palliative care services as part of the local health care system. These services could be in the community, hospice inpatient or hospital settings, with some post holders working across settings, depending on local need.

The GPwER PEoLC will work alongside existing palliative care services. It is anticipated that most referrals will come via the standard referral route for those services. Depending on local arrangements, GP practices might refer directly to the GPwER for support with complex patients.

The GPwER PEoLC works autonomously as a GP. When working with local palliative care services or within a primary care organisation, the post holder will follow the organisation’s governance framework and follow organisational clinical guidelines. They will be required to participate in appraisal covering the whole scope of their practice, to ensure that they are supported to work within their agreed areas of capability.

The GPwER PEoLC is expected to have a performance review with their palliative care employer; the outcomes of this performance review is then incorporated into their annual (full scope of practice) medical appraisal.

Palliative and end of life care is delivered across primary and secondary care, with close integration and communication between services being critical for timely and safe care.

The GPwER PEoLC role interfaces with the following:

• Hospital palliative care service 
• Hospice inpatient services 
• Community palliative care services 
• Social services 
• Community therapy services, for example physiotherapy, occupational therapy, speech and language and dietetics 
• Hospital and community pharmacy 
• GP networks (for example PCNs or neighbourhoods)  
• Primary care 
• Secondary care 
• Relevant community services, for example, hospital@home, frailty/complex care, rapid response or urgent care teams 
• Hospital discharge teams 
• Care home staff 
• Services supporting vulnerable individuals, for example homelessness, learning disability 
• Compassionate community groups

For a GPwER PEoLC this is flexible, ranging from a single session (per week) to a significant portfolio role.

The GPwER is employed by Trust or Hospital or ICB or PCN (in England), a Hospice or Palliative Care Service, GP Network or similar; or could be a partner, salaried or locum GP.