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CQC Essentials: End-of-life care

This article looks at the GP practice's role in end-of-life care and how the CQC will look at this issue during its inspections.

This article relates to the CQC key question: Is your practice effective? and is your practice responsive to people's needs?

GP practices have an essential and unique role in care giving and in coordinating good quality end of life care.

Approximately 500,000 people (1%) will die in England each year and this is set to increase with an ageing population. In addition to physical symptoms such as pain, breathlessness, nausea and increasing fatigue, people who are approaching the end of life may also experience anxiety, depression, social and spiritual difficulties.

Managing these issues properly requires effective multidisciplinary working and information sharing between GPs, other generalists and specialist teams, whether the person is at home, in hospital or elsewhere.

Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days).

Palliative care

The palliative care approach improves the quality of life for both patients with life-threatening illness and their families. It includes preventing and relieving suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Specialist palliative care was developed initially for people with cancer but is just as appropriate for people approaching the end of life with a wide range of medical conditions.

GP practice role, national best practice guidance and CQC inspection

GPs have the essential and unique position where they are able to identify people at end of life, as well as coordinating and overseeing of end of life care. A high proportion of people living in care homes are likely to be at the end of their lives. GPs will visit these patients and should work closely with care home providers to identify and support this potentially hidden population at the end of their lives.

The important role of the GP in end of life care is evident in national guidance and standards:

We always ask five key questions of services focused on the quality and safety of services and based on the things that matter to people. There is a specific prompt on end of life care as part of the key question on effectiveness:

"Do people have their needs assessed and their care planned and delivered in line with evidence based guidance practice including for people in the last 12 months of their life?"

We will also always look at how services are provided to people in specific population groups.

Five priorities for care of the dying person

The Leadership alliance for care of dying people (a collation of 21 national organisations including CQC) agreed five priorities for end of life care for all health and care staff to achieve.  They aim to focus on the individual, with a personalised approach to improve care of the dying, their family and carers. This followed the review and phasing out of the Liverpool Care Pathway in July 2014.

These five new priorities are set out in ‘One chance to get it right’ and make the GP practice role in delivering these priorities clear.

The five priorities and accompanying guidance inform CQC’s inspections. They are summarised below, with information about what we expect to see when we inspect GP practices.

1. Possibility of death is recognised and communicated

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.

The ‘Find your 1%’ campaign supports GPs to identify patients who are likely to die within 12 months. Most GPs provide the new enhanced service to identify and register the 2% of patients at risk of admission to hospital. Identifying people at the end of life enables care planning and communication and service coordination. GPs should have a palliative care register to support this.  Cancer patients generally have better access to palliative care and GPs should ensure access to care for all who need it, not just those with cancer. 

When we inspect we are likely to ask how many patients in your practice who died in the last year were included on your palliative care/GSF/QOF register (key ratio) and how many of these had non-cancer conditions.

2. Sensitive communication

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. A 2012 Ibid survey of GPs found that 35% had never initiated a conversation about end of life care with a patient.

When we inspect we will consider how the practice uses the palliative care register and team meetings to improve coordination and communication with others involved in a person’s care.

3. Patients are involved in decisions

The dying person, and those identified as important to them, are involved in decisions about treatment and care.

GP planning and discussions should support people to make choices about their preferred place of death. The proportion of people dying in their preferred place of death has increased, but there is still a disparity between the actual and preferred place of death.

When we inspect we will want to understand how the practice records discussions about patients’ needs, wishes and preferences (advanced care planning discussions) and how it ensures they are enacted or fulfilled. We will also ask how many of your patients died where they wished to (preferred place of care) and in each setting (home, hospital, care home, hospice, other)

4. People important to the dying person are listened to

Relatives and carers can have a significant role in caring for the dying;  GPs should recognise this role and provide support to carers and the bereaved. People important to the dying person should be listened to and their needs respected.

When we inspect we will ask how practices support the family and carers of patients at the end of life and in bereavement.

5. Care is tailored to the individual

Care should be 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.

When we inspect we will look for evidence of supporting patient’s individualised care plans.

The five priorities are aligned with existing NICE quality standards for end of life care and GMC’s good practice guidance. End of life care should be an integral part of all health care roles and the NICE standards are a detailed description of good quality end of life care for health and social care workers in all settings. GPs may use frameworks or local area guidance they have adopted to implement good practice. The Gold Standards Frameworkprovides training programmes and assurance accreditation.

End of life care thematic review

We are doing a thematic inspection programme on inequalities and variations in end of life care as part of our strengthened approach to end of life care. The concern is that there is variation in quality of care for certain groups of people:

  • those with a non-cancer diagnosis
  • the homeless
  • those with dementia, mental health problems, or a learning disability
  • the homeless
  • black, Asian and minority ethnic groups (BAME)
  • people who are lesbian, gay, bisexual and transgender (LGBT).

The programme will identify and understand variation in people’s experience of end of life care and barriers which prevent people from receiving good quality care. Our findings will be published in spring 2016 and we are working in partnership with others to strengthen the impact of our work and encourage improvement.

Find out more

This article was written by Dr Stephen Richards, GP Regional Advisor for London at the CQC with the help and support of colleagues both within and outside CQC.

More CQC resources

Picture: iStock

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