What Is End of Life Care? What Care Homes and Home Care Providers Must Plan, Record and Evidence
A provider’s guide: what end of life care is, when it starts, what NICE expects from services and what inspectors will want to see in your records.
End of life care is support for people who are in the last months or years of their life, to help them live as well as possible until they die and to die with dignity. The NHS says people are considered to be approaching the end of life when they are likely to die within the next 12 months, although this is not always possible to predict. For care homes and home care providers it means identifying those people, asking what matters to them, planning care and keeping that plan current.
Care homes are where many people spend their last months. Home care workers also support people who are dying at home. Inspectors look for the same things in both: that people’s wishes were asked about, recorded and followed, that symptoms were managed, that families were supported and that the person was treated with dignity.
This guide uses the NHS description of what end of life care involves, NICE’s end of life care for adults: service delivery (NG142) and the NHS page on planning ahead. It is about governance and records, not clinical treatment decisions.
Key takeaways
- End of life care covers the last months or years of life. It is a form of palliative care, delivered when someone is close to the end of life.
- NICE expects services to have systems to identify people likely to be approaching the end of life, assess their holistic needs and support carers.
- People should be supported to make advance care plans, and a copy should be available where they live and travel with them.
- In care homes and at home the GP has overall responsibility for medical care; your role is to identify, coordinate, record and escalate.
- Record wishes, decisions, reviews and the family’s involvement, because that is the evidence of person-centred, dignified care.
In this guide
What Is End of Life Care, and When Does It Start?
The NHS says end of life care is support for people who are in the last months or years of their life. It should help them live as well as possible until they die and to die with dignity, ask about their wishes and preferences and support family, carers and others important to them. People have the right to express wishes about where they want to receive care and where they want to die.
The NHS says people are considered to be approaching the end of life when they are likely to die within the next 12 months, though this is not always possible to predict. That includes people whose death is expected soon and people who:
- have an advanced incurable illness such as cancer, dementia or motor neurone disease
- are generally frail and have other conditions that mean they are expected to die within 12 months
- have existing conditions and could die if their condition suddenly gets worse
- have a sudden life-threatening condition caused by an event such as a serious accident or stroke
What Is the Difference Between End of Life Care and Palliative Care?
The NHS describes end of life care as a form of palliative care received when someone is close to the end of life. Palliative care aims to make a person with an incurable illness as comfortable as possible by managing pain and other distressing symptoms, with psychological, social and spiritual support for them and their family. It is available from when someone first learns they have a life-limiting illness and can be provided alongside other treatment.
What Does NICE Expect From Services?
NICE’s service delivery guideline NG142 is addressed to people managing and delivering services. Key points relevant to providers:
- Identify people: develop systems to identify adults likely to be approaching the end of life, for example with recognised tools such as the Gold Standards Framework or the Amber Care Bundle, and identify their carers and other people important to them.
- Assess holistic needs: make sure practitioners have the training and skills to carry out sensitive holistic needs assessments.
- Support carers: be aware of the requirement to offer a carer’s needs assessment under the Care Act 2014.
- Support decision making: have systems to provide the information people want, in the way they want it.
- Advance care planning: have processes to involve carers if the person agrees, and systems so each person has a copy of their advance care plan available where they live, or with them if they move to hospital or a care home. Where the person lacks capacity, take account of carers’ views in line with the Mental Capacity Act 2005.
- Review treatment and coordinate care: review current treatment as needs change and provide end of life care coordination across the team.
- Out-of-hours care and transfers: plan for out-of-hours support and smooth, rapid transfers between settings.
For the last days of life, the NHS points to NICE’s separate guidance on the care of dying adults, covering symptom management and dignity and respect for the dying person, their relatives and carers.
What Advance Planning Should Be Recorded?
The NHS lists several ways people can plan ahead. Make sure your records show which, if any, the person has and where the documents are:
| Plan | What it is | What to record |
|---|---|---|
| Advance statement | A statement of the person’s wishes, preferences and values | The statement and where it is kept; include it in the care plan |
| Advance decision to refuse treatment | A decision made when the person has capacity to refuse specified treatment in future, which is legally binding if it is valid and applicable | The document, its date and who holds the original; make sure staff know it exists |
| Lasting power of attorney | Gives a chosen person authority to make decisions if the person loses capacity | The type of LPA, the attorney’s contact details and a copy of the registered document |
Check with the person’s GP or the relevant clinician about any resuscitation or emergency treatment decision, make sure it is recorded, current and easy to find, and that it was made with the person or in line with the Mental Capacity Act.
What Will CQC Look For?
There is no separate end of life regulation. Inspectors test it through the regulations that apply to all care:
- Regulation 9, person-centred care: were the person’s wishes asked about and followed?
- Regulation 10, dignity and respect: privacy, comfort and respect for the person and their family.
- Regulation 12, safe care and treatment: pain and symptom management and medicines available when needed.
- Regulation 18, staffing: staff who are trained, competent and supported.
- Regulation 17, good governance: accurate, complete and contemporaneous records.
- Notifications: the death of a person using your service has its own rules. See notify CQC of a death.
Culture matters too. See our guides to culturally appropriate care and the human rights approach, which shape how you support religious, cultural and personal wishes at the end of life.
How Can CQC Logic Help?
CQC Logic does not provide clinical end of life records or advance care planning forms. It supports the governance around them: a care plan review audit and a custom end of life audit in the audit schedule tracker, an incident and complaint log so learning is captured, a notification tracker for deaths and other reportable events, and a training and supervision record so staff competence is evidenced. See plans.
Sources: NHS: What end of life care involves and when it starts · NHS: Planning ahead for end of life care · NICE NG142: End of life care for adults: service delivery
Evidence person-centred care at the end of life
CQC Logic helps you audit care plans, capture learning and track actions, so you can show inspectors that people’s wishes were recorded and followed. See a sample improvement plan, view pricing or get started free.
Frequently Asked Questions
What is end of life care?
Support for people who are in the last months or years of their life, to help them live as well as possible until they die and to die with dignity, including support for their family and carers.
When does end of life care start?
The NHS says people are considered to be approaching the end of life when they are likely to die within the next 12 months, although this is not always possible to predict. Care should begin when it is needed and may last days, months or sometimes more than a year.
What is the difference between palliative care and end of life care?
The NHS describes end of life care as a form of palliative care received when someone is close to the end of life. Palliative care can start as soon as someone is diagnosed with a life-limiting illness and can run alongside other treatment.
Who is responsible for end of life care in a care home?
The NHS says that if someone is cared for at home or in a care home, their GP has overall responsibility for their care. The care home’s role is to identify, plan, coordinate, record and escalate, and to provide personal care and support.
What should be in an end of life care plan?
The person’s wishes and preferences, any advance statement, advance decision or lasting power of attorney, who is involved, symptom management arrangements, spiritual and cultural needs, and how family and carers will be supported.
Does a care home need a separate end of life policy?
There is no regulation that requires a policy with that title, but inspectors expect clear processes for identifying people, planning ahead, recording wishes and reviewing needs. Many providers document these in an end of life or advance care planning policy.