The End of Life Care Planning Process - An Expert Guide In 2024!

Thinking about the end of life is hard, whether it's your own or a loved one's. But putting a plan in place early gives everyone something solid to work from: clear wishes, the right legal documents, and less guesswork when decisions have to be made quickly. This guide sets out what a good end of life care plan covers, the legal steps that matter, and where to find real support in England.

What is end of life care planning?

End of life care planning is the process of setting out what someone wants for their care and treatment as their life draws to a close - and writing it down so it can be found and followed. It usually covers three areas: medical treatment decisions, where care should happen, and personal wishes about family, faith and final arrangements.

In England, this sits within the wider system of care and support described in the NHS social care and support guide. It brings together GPs, palliative care teams, social workers, and often a hospice, all working from the same plan.

When should you start end of life care planning?

As early as possible. Many people wait until a crisis forces the conversation, but planning works best when the person involved can still discuss their wishes clearly. Good moments to start include:

• Shortly after a terminal or serious diagnosis
• When a long-term condition begins to worsen
• At any point if someone simply wants their wishes on record, regardless of current health

Early planning also gives a person's family time to ask questions and adjust, rather than making decisions under pressure. NICE guidance on care of dying adults sets out how services should support this conversation - see NICE for its published guidelines.

What should an end of life care plan cover?

There's no single official template, but a thorough plan usually includes:

• Medical treatment wishes - including views on resuscitation (CPR), artificial feeding, and other life-prolonging treatment
• Preferred place of care and death - home, care home, hospice or hospital
• Pain and symptom management preferences
• Who should be involved - family members, friends, faith leaders
• Religious, spiritual or cultural wishes
• Practical and funeral wishes, if the person wants to record these
• Legal documents in place - power of attorney, advance decisions, DNACPR status

This plan should be shared with the person's GP, any care providers, and their next of kin or attorney, so it can actually be followed when it's needed.

What legal documents matter most?

Lasting power of attorney (health and welfare)

A lasting power of attorney (LPA) for health and welfare lets someone appoint a trusted person to make care and medical decisions on their behalf if they lose the mental capacity to do so themselves. This is different from a financial LPA, and both need to be registered separately. Setting this up while the person has capacity is essential - it cannot be arranged after capacity is lost. See GOV.UK's guidance on lasting power of attorney for how to apply.

Advance Decision to Refuse Treatment (ADRT)

Sometimes called a "living will", an ADRT is a legally binding document that lets someone refuse specific medical treatments in advance - for example, resuscitation or ventilation - in situations they define. To be valid, it must be made while the person has capacity, be clear about which treatments it covers, and be signed and witnessed if it refuses life-sustaining treatment. Copies should go to the GP, hospital records, and anyone likely to be involved in care decisions.

DNACPR and the ReSPECT process

A Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision is a medical order, usually agreed between the person, their family and their doctor, that says CPR should not be attempted. Many areas now use a ReSPECT form, which records wider treatment and care preferences alongside the resuscitation decision. Ask the GP or hospital team whether ReSPECT is used locally.

Where can end of life care take place?

The right setting depends on medical needs, personal preference, and what support is available at home. It's worth discussing all options with the GP or palliative care team rather than assuming only one is possible.

How do you access palliative and hospice care?

Palliative care focuses on comfort, symptom control, and emotional support for people with serious or terminal illness - it isn't only for the final days or weeks. Access usually works like this:

1. Ask the GP or hospital consultant for a referral to the local palliative care team
2. The team assesses needs and can involve a hospice, community nursing, or hospital-based specialists
3. Hospice care can be provided at the hospice itself, or through hospice-at-home services

Getting a referral early, rather than waiting until things become urgent, allows more time to build a plan around the person's actual preferences.

Who is involved in end of life care?

• GP - usually coordinates care and can refer to specialist services
• Palliative care doctors and nurses - manage pain and symptoms, and support advance care planning
• District and community nurses - provide hands-on care at home
• Social workers - arrange practical support and connect families with local resources
• Hospice teams - offer specialist care and family support, including after death
• Chaplains or faith leaders - support spiritual and religious needs, if wanted

How is end of life care funded?

Funding depends on the type of care and the person's needs and finances:

• NHS Continuing Healthcare (CHC) can fund the full cost of care where health needs are the primary reason for support - it's not means-tested, and there's a fast-track process for people nearing the end of life. Ask the care team or GP about a fast-track CHC assessment.
• Local authority care is means-tested, based on capital and income thresholds that change periodically - check the current figures on GOV.UK or ask the council for a needs assessment via GOV.UK's guide to applying for a care needs assessment.
• Attendance Allowance can help with extra costs for people over State Pension age with care needs - see GOV.UK on Attendance Allowance.
• Pension Credit may top up a low income and open the door to other help, such as reduced council tax or NHS costs - see GOV.UK on Pension Credit.
• For general money guidance around care costs, MoneyHelper is a free, independent service.

How do you talk to family about end of life wishes?

These conversations are easier with some groundwork:

• Choose a quiet, private moment rather than raising it in passing
• Let the person lead on how much detail they want to share, and when
• Expect strong emotions - sadness, relief, even humour - and allow space for all of them
• Write down what's agreed, and share it with the GP and anyone named in an LPA
• Revisit the plan if health, circumstances or wishes change - it isn't fixed once written

Support for families and carers

Caring for someone at the end of life is exhausting, physically and emotionally, and support is there to help carry it. Local hospices often provide bereavement counselling and carer support groups. National charities including Marie Curie and Macmillan Cancer Support offer information lines and emotional support for people affected by terminal illness. Carers UK and Age UK can advise on practical support, benefits, and respite care. If dementia is part of the picture, Alzheimer's Society and Dementia UK's Admiral Nurses offer specialist guidance.

Respite care can give a carer a genuine break while the person they care for continues to be looked after safely. Ask the GP, social worker or local hospice what's available in your area.