End-of-Life Care at Home: What It Involves and How to Arrange It

Topic cluster: End of Life & Palliative Care | Reading time: 7 min

Most people, when asked, say they would prefer to die at home if possible. With the right support, this is achievable for many families. End-of-life care at home is not about a family going it alone — it involves a team of professionals supporting your parent and supporting you.

What End-of-Life Care at Home Involves

End-of-life care (the final weeks or days of life) at home typically involves a coordinated team:

District nursing team District nurses are the backbone of end-of-life care at home. They visit regularly to manage symptoms, administer medication, provide wound care, manage catheter care, and assess your parent's comfort. They are usually available outside normal hours through an on-call rota.

Community palliative care nurse specialist A Macmillan nurse or similar community palliative care specialist may be involved, providing expert symptom management advice and emotional support for both your parent and your family. Contact your local hospice — most provide this service free.

GP Your parent's GP remains central — authorising medications, providing clinical oversight, and coordinating between the team.

Hospice at home team Many local hospices have 'hospice at home' services providing hands-on care at your parent's home — sitting with them overnight, providing personal care, giving family carers a break. These services are usually free.

Home care agency A paid home care agency can provide personal care, help with washing and dressing, and practical support between nursing visits.

Anticipatory (Just-In-Case) Medicines

A crucial part of end-of-life care planning at home is the provision of anticipatory medicines — a small supply of medications kept at home for symptom control. Common anticipatory medicines manage:

Pain
Breathlessness
Nausea
Agitation or distress

These are prescribed by the GP and can be administered by a district nurse (or, in some cases, by a trained family carer under specific circumstances). Having these medicines in place means that if symptoms develop, there is no delay while a prescription is arranged.

Ask the GP or district nurse whether anticipatory medicines have been arranged. This is standard practice for end-of-life care at home and should happen before a crisis.

Preferred Priorities of Care

A Preferred Priorities of Care (PPC) document records your parent's wishes about where they want to be cared for, who they want with them, their resuscitation wishes, and any other preferences. It is not legally binding, but it is an important communication tool that helps the whole team understand and respect your parent's wishes.

Your parent can complete this with their district nurse, GP, or palliative care nurse. It should be kept somewhere accessible at home (many families keep it on or near the front door so emergency services can find it).

An Advance Decision to Refuse Treatment (ADRT) can be used to specify treatments your parent would refuse (such as cardiopulmonary resuscitation). Unlike a PPC, an ADRT is legally binding if properly completed.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

A DNACPR notice advises emergency services not to attempt CPR. If your parent does not want CPR, this needs to be in place and accessible. Without a DNACPR, emergency services arriving at the home are legally required to attempt resuscitation.

Discuss this with the GP. Completing a DNACPR form is not choosing to give up — it is recording your parent's wishes about what happens at the moment of death.

What You Will Need as a Family Carer

Providing end-of-life care at home is physically and emotionally demanding. Support for you includes:

Carer's assessment — to identify your own support needs
Night sitting services — through the local hospice or charity sitting services
Bereavement support — most hospices offer free bereavement counselling, available before and after the death
Admiral Nurse helpline (if dementia is involved) — 0800 888 6678

What Happens When Someone Dies at Home

When your parent dies at home:

Call the GP to confirm the death and issue a Medical Certificate of Cause of Death (MCCD)
If the GP cannot attend, call 111 — they will advise next steps
The doctor may contact the coroner if the cause of death is uncertain
Once the MCCD is issued, contact a funeral director
Register the death within 5 days at the local register office (10 days in Scotland)

You do not need to call 999 unless there are circumstances that suggest the death was unexpected or suspicious.

Find care homes with palliative care expertise at homeformum.com