End-of-Life Planning: A Practical Guide for Families

Advance care planning (ACP) is the process of thinking about, discussing, and recording your wishes for future care. It helps you set out what matters to you while you still have the capacity to do so, and ensures that healthcare professionals and family members know your preferences if you later become unable to communicate them yourself.

The main tools used in advance care planning are:

• Advance decision to refuse treatment (ADRT) - legally binding in England and Wales. Lets you refuse specific medical treatments in advance.
• Advance statement - not legally binding, but must be considered by healthcare professionals. Records your general wishes, values, and preferences about future care.
• Lasting power of attorney for health and welfare - appoints someone to make health and care decisions on your behalf if you lose capacity.
• DNACPR and ReSPECT forms - record clinical decisions about resuscitation and emergency treatment preferences.

NHS England published Universal Principles for Advance Care Planning in 2022, which set out how ACP should be offered and supported across health and care settings. These principles emphasise that ACP should be voluntary, person-centred, and revisited regularly.

An ADRT lets you refuse specific medical treatments in advance. If valid and applicable, it is legally binding in England and Wales under the Mental Capacity Act 2005. This means healthcare professionals must follow it, even if they disagree with your choice.

To be valid, an ADRT must be:

• Made voluntarily, without pressure from anyone
• Made by a person aged 18 or over who has the mental capacity to understand the decision
• Not withdrawn or contradicted by later actions

For an ADRT that refuses life-sustaining treatment, there are additional requirements. It must be:

• In writing
• Signed by you
• Witnessed by another person who also signs
• Include a clear statement that the decision applies even if your life is at risk

An ADRT cannot be used to demand treatment or to refuse basic nursing care such as warmth, shelter, and hygiene.

Scotland: Advance directives are not statutory but carry significant weight in clinical practice and at common law. Healthcare professionals are expected to respect them.

Northern Ireland: The Mental Capacity Act (Northern Ireland) 2016 has been partially commenced. Advance decisions are binding at common law, though there is no detailed statutory framework yet in force.

For a detailed guide to creating an advance decision, see our guide to advance decisions and living wills.

A DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) form records a clinical decision that CPR should not be attempted if your heart or breathing stops. It does not affect any other treatment you receive. A DNACPR is made by a senior clinician, ideally in discussion with you and your family.

The ReSPECT process goes further. ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is a personalised plan that records your preferences for a range of emergency treatments, not just CPR. It can include whether you would want hospital admission, intensive care, or to stay in your current setting.

Neither a DNACPR nor a ReSPECT form is legally binding in the same way as an ADRT, but both carry strong weight in clinical decision-making and are used across much of the UK. They are completed by healthcare professionals and should be reviewed regularly, especially if your condition changes.

Where someone spends their final days matters deeply. ONS data from 2023 shows that 42.8% of deaths occurred in hospital, 28.4% at home, 21% in a care home, and 5.2% in a hospice. Many people say they would prefer to die at home, but this depends on the support available and the nature of the illness.

Home

Dying at home is possible for many people with the right support. District nurses and community palliative care teams can visit regularly. GPs can prescribe "just in case" medication: a small kit of drugs kept at home so that symptoms like pain, nausea, or agitation can be managed quickly without waiting for a prescription. Ask the GP or palliative care team about this early.

Hospice

Hospice care is free. Hospices provide specialist palliative care focused on comfort, dignity, and quality of life. A GP referral is usually enough to access hospice services, and there is no means test. Around one third of hospice funding comes from the NHS, with the rest raised through charitable donations. Hospices also offer day services, outpatient clinics, and support at home.

Care home

If someone is already in a care home, they can usually stay there for end-of-life care. It is worth asking the care home about their palliative care training and whether they have links with a local hospice or palliative care team. Some care homes have dedicated end-of-life suites or additional nursing support.

Hospital

Hospital is sometimes necessary if acute treatment is needed, but it is worth discussing alternatives early. If the goal of care has shifted from treatment to comfort, a hospital may not be the best setting. Talk to the medical team about whether a transfer home or to a hospice is possible.

When someone has a terminal illness, there are specific benefits and financial support available. Acting quickly can make a real difference.

SR1 form (formerly DS1500)

The SR1 form replaced the DS1500 in July 2025. It is completed by a clinician for patients who may have less than 12 months to live. Filing an SR1 triggers the Special Rules for Terminal Illness, which means:

• No medical assessment is required
• The highest rate of the relevant benefit is awarded
• Claims are decided within weeks rather than months

The SR1 applies to PIP, DLA, Attendance Allowance, ESA, and Universal Credit. Ask the GP, hospital consultant, or specialist nurse to complete the SR1 form.

Hospice stays and benefits

If someone is in a hospice, their disability benefits (such as PIP or Attendance Allowance) continue to be paid. This is different from the hospital rule, where certain benefits stop after 28 days as an inpatient.

Care home and benefits

If someone moves to a care home and the local authority contributes to the fees, Attendance Allowance or PIP daily living component may stop after 28 days. However, the PIP mobility component continues regardless.

Carer's Allowance

Carer's Allowance is currently £81.90 per week (April 2025 rate). If you are caring for someone who then dies, Carer's Allowance continues for 8 weeks after the death. This gives you a short financial buffer during an incredibly difficult time.

Having the right documents in place before they are needed saves families enormous stress. These are the key documents to consider:

• Will - sets out how your estate should be distributed. See our guide to making a will.
• Lasting power of attorney - appoints someone to make decisions on your behalf. See our guide to lasting power of attorney.
• Advance decision to refuse treatment - records your wishes about medical treatment. See our guide to advance decisions and living wills.
• Funeral wishes - records your preferences for your funeral. See our guides to recording funeral wishes and prepaid funeral plans.
• Expression of wishes for pensions - tells your pension provider who should receive any death benefits. See our guide to pensions and inheritance tax.
• Key contacts list - a list of important contacts including solicitor, financial adviser, GP, and close friends or family who should be notified.
• Digital access information - passwords, account details, and instructions for online accounts. See our guide to digital legacy.

There is no perfect moment to talk about end-of-life wishes. Most families find that waiting for the "right time" means the conversation never happens. Starting small is better than not starting at all.

These conversations can happen anywhere: over tea, on a walk, during a quiet moment at home. They don't need to be formal or cover everything at once. What matters is that they happen.

Topics to cover, when the person is ready:

• Where they would like to be cared for
• Their wishes about medical treatment
• Funeral preferences
• Where their will is kept
• Who should make decisions if they cannot
• Financial information: bank accounts, pensions, insurance policies

If the person does not want to talk about it, respect that. You can let them know you are available whenever they are ready, and leave it there. Some people need time, and some will never want to have this conversation directly but may be willing to write things down instead.

Hospices support families as well as patients, both before and after a death.

Before death

Many hospices offer social workers, family counselling, anticipatory grief support, and carer support groups. These services are available to the family of anyone receiving hospice care, and they are free. If someone you care about is receiving hospice support, ask the hospice what is available for you.

After death

Most hospices offer bereavement support for families, including one-to-one counselling, group sessions, and telephone support. This is usually available regardless of whether the person died in the hospice or at home with hospice support.

You can contact your local hospice directly to ask about available services. The Hospice UK directory at hospiceuk.org lists hospices across the UK.

When a serious diagnosis is given

• Ask the GP about advance care planning
• Discuss a palliative care referral
• Consider whether an SR1 form should be completed
• Check whether a will, LPA, and ADRT are already in place

When end-of-life care begins

• Confirm where the person wants to be cared for
• Ask about a ReSPECT form
• Check benefit entitlements and apply if needed
• Ensure the palliative care team has family contact details
• Ask about "just in case" medication if the person is at home

When ready to plan ahead

• Make or update a will
• Set up lasting powers of attorney
• Complete an advance decision to refuse treatment
• Record funeral wishes
• Update pension expression of wishes
• Make a key contacts list
• Tell family members where all documents are kept

For a comprehensive planning checklist, see our estate planning checklist.