End-of-life planning¶

Estate planning sits at a comfortable distance from death. End-of-life planning is what happens when the distance has closed: a serious diagnosis, a frailty assessment, a move into a care home or hospice. The administrative tasks of dying — choosing where to be cared for, recording treatment preferences, accessing fast-tracked benefits, having the difficult conversation with family — are usually unfamiliar to the people doing them for the first time, and they sit alongside grief, exhaustion, and the day-to-day care itself.

This guide is for families currently in that situation, and for people who have a diagnosis of their own and want to think the practical questions through. It complements the broader estate planning checklist (which is written for people not yet in this position) and the dedicated guides on the legal documents.

If you can only do one thing today: if a family member has a serious diagnosis and the GP has not yet talked about advance care planning, ask the next time you have an appointment. The GP can start the conversation, write the SR1 form for fast-tracked benefits, and refer to community palliative care. None of this requires the patient to know they are dying — the conversations can be paced.

Advance care planning: what it is¶

Advance care planning (ACP) is the process of thinking, talking, and recording what someone wants for their future care if they later cannot speak for themselves. It is not a single document and not a moment — it is a series of conversations and decisions, recorded across several places, each carrying different legal weight.

NHS England published the Universal Principles for Advance Care Planning in 2022. The core principle: ACP is person-led. The patient decides what to discuss, when, with whom, and how much to record. Nothing in the framework requires the patient to know their prognosis or to engage at all if they prefer not to.

The four main tools, in order of legal force:

Tool	Legal force in E&W	Effect
Advance Decision to Refuse Treatment (ADRT)	Binding under MCA 2005 ss.24–26	Refuses named treatments in specified circumstances
Health and Welfare LPA	Binding under MCA 2005 ss.9–14	Appoints an attorney to make care decisions
Advance statement	Not binding	Records values, preferences, what matters most
DNACPR / ReSPECT form	Clinical recommendation, not binding	Records resuscitation and emergency-care preferences

Each is covered in turn below. Most patients end up using two or three together; the documents are designed to layer rather than substitute.

Advance Decision to Refuse Treatment (ADRT)¶

The legally binding tool. An ADRT under sections 24–26 of the Mental Capacity Act 2005 lets a person with capacity refuse named medical treatments in advance, in case they later lack capacity to do so. If the ADRT is valid and applicable, healthcare professionals must follow it — even where they consider treatment would prolong life.

For refusing life-sustaining treatment (artificial nutrition and hydration, ventilation, CPR, certain medications) the ADRT must be in writing, signed by the patient in front of an adult witness, include the explicit "even if my life is at risk" statement, and be witnessed in the patient's presence. Without these formalities the attempted refusal of life-sustaining treatment is invalid.

What an ADRT can and cannot do — and how it interacts with a Health and Welfare LPA — is covered in detail in Advance decisions and living wills.

Scotland and Northern Ireland: the Mental Capacity Act 2005 does not apply. In Scotland, advance statements are recognised at common law and in clinical practice but are not statutorily binding; in practice a clearly written and witnessed advance statement is followed. In Northern Ireland, advance decisions are governed by common law and are binding where valid and applicable; the Mental Capacity Act (Northern Ireland) 2016 is partially commenced but does not yet cover the area in detail.

DNACPR and ReSPECT¶

Two clinical documents that often appear in end-of-life care and are frequently confused with the ADRT.

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) records a clinical decision that CPR should not be attempted if the heart or breathing stops. It does not affect any other treatment — a person with a DNACPR in place still receives all other appropriate care. The decision is made by a senior clinician (typically a GP, hospital consultant, or palliative care lead) in conversation with the patient and family, using guidance from the Resuscitation Council UK. A DNACPR can be reviewed and reversed; it is not permanent.

ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is a more comprehensive personalised plan that records preferences for a range of emergency treatments, not just CPR. It is completed through a conversation between the patient (or their family or representative) and a healthcare professional. Most NHS regions in the UK now use ReSPECT, particularly in care homes, hospices, and community palliative care; some still use older local documents.

Neither DNACPR nor ReSPECT is legally binding in the way an ADRT is. They are clinical recommendations carrying strong practical weight. Where a patient wants a refusal to be legally enforceable rather than clinically respected, an ADRT is the right tool; ReSPECT can sit alongside it and capture the broader preferences.

Choosing where to be cared for¶

The four realistic settings: home, hospice, care home, hospital. The choice depends on the condition, the available care, and the patient's preference. Realistically it also depends on what the local palliative care service can support.

Home. With community palliative care, district nursing, and (where available) hospice outreach, dying at home is often possible. Practical preparation: a hospital-style bed and pressure-relieving mattress, a community alarm or out-of-hours number, "just-in-case" anticipatory medications kept at the home for symptom management, and a clear understanding among the family of who to call when. The GP arranges most of this on referral; the local palliative care team co-ordinates with the district nurses.

Hospice. Specialist palliative care focused on comfort, symptom management, and family support. Hospice care is provided at no charge — most hospices receive a minority of their funding from the NHS (often around a third) with the rest raised charitably. There is no means test. A GP referral is normally enough; many hospices accept self-referral or family-initiated referral. Hospice care is delivered in three settings: in the hospice building, at home (through hospice outreach), or in a care home (through hospice support visits).

Care home. A patient already in a care home may stay there for end-of-life care rather than move. Quality varies; ask the home manager what training the staff have in palliative care and whether the home has a relationship with the local hospice or community palliative care team. The interaction between care-home fees and benefits is covered in Care home fees after a death.

Hospital. Appropriate where the patient needs acute treatment that cannot be delivered elsewhere. Most patients prefer not to die in hospital where there is a realistic alternative, but hospital is the right answer for some conditions and circumstances. If the patient is in hospital and wants to be discharged home or to a hospice, raise this with the clinical team early — discharge co-ordination takes days, not hours.

The realistic split in England (ONS deaths-by-place-of-occurrence, 2023) is roughly two-fifths in hospital, just over a quarter at home, around a fifth in a care home, and one in twenty in a hospice. The proportions at home and in hospices have risen since the pandemic; the hospital share has fallen. Scotland and Northern Ireland show a higher home-deaths share, closer to a third.

Fast-tracked benefits: the SR1 form¶

The single most useful administrative step for a terminally-ill patient is having an SR1 form completed by the GP, hospital consultant, or specialist nurse. Form SR1 (which replaced the older DS1500 in April 2022, when the qualifying period was lengthened from 6 to 12 months) confirms that the patient has a progressive disease and that the clinician would not be surprised if the patient lived less than 12 months. It triggers the Special Rules for End of Life (formerly Special Rules for Terminal Illness). [source: gov-uk/dwp-special-rules-terminal-illness-2026-05-02.html]

The effect: claims are fast-tracked. No medical assessment, no work-capability test. The benefit is awarded at the highest applicable rate, usually within weeks rather than months. Benefits the SR1 fast-tracks include Personal Independence Payment (PIP), Disability Living Allowance for children, Attendance Allowance, Employment and Support Allowance (ESA), and the Limited Capability for Work and Work-Related Activity element of Universal Credit. [source: gov-uk/dwp-special-rules-terminal-illness-2026-05-02.html]

The patient does not need to know. The form can be requested by a family member, carer, hospice nurse, or social worker; the clinician decides whether the criteria are met. The clinician does not need to discuss the prognosis with the patient if doing so would be harmful — the SR1 process is designed to allow the family to access support without forcing a conversation the patient is not ready for.

Carer's Allowance and other support¶

A family member providing at least 35 hours a week of unpaid care to someone with a substantial caring need may qualify for Carer's Allowance, currently £81.90 per week (April 2025 rate). The carer must not be in full-time education and must earn less than £196 per week after deductions. [source: gov-uk/carers-allowance-2026-05-02.html]

When the person being cared for dies, Carer's Allowance continues for 8 weeks after the death — a so-called "run-on" period intended to give the carer time to adjust before benefits stop. Bereavement-related state support is covered separately in Stopping benefits after a death. [source: gov-uk/carers-allowance-2026-05-02.html]

Other benefits that may continue after a hospice or care-home admission depend on the setting and on whether the local authority is contributing to care costs. The general rule: disability benefits (PIP, DLA, Attendance Allowance) continue in full during a hospice stay, provided the DWP is notified in writing that the patient is terminally ill. The 28-day rule that suspends those benefits during a hospital stay does not apply to terminally ill claimants under the Special Rules. Entry to a care home where the local authority funds care typically suspends Attendance Allowance and the daily-living component of PIP after 28 days; the mobility component of PIP continues regardless.

The legal documents to have in place¶

If end-of-life planning has begun, the legal paperwork needs to come up the priority list. The minimum useful set:

A current will, with a known location. See Making a will. If the will needs updating (a new diagnosis often coincides with a need to revisit the will), the DIY-vs-solicitor guide is the comparison.
A registered Lasting Power of Attorney for both finance and welfare. The welfare LPA can only be created while the patient still has capacity; once capacity is lost the alternative is the Court of Protection deputyship route, which costs £371 to apply for and takes 6–12 months. See Lasting power of attorney.
An advance decision, if there are specific treatments the patient wants to refuse in advance. Particularly important where the patient has strong feelings about CPR, ventilation, or artificial nutrition. See Advance decisions and living wills.
Funeral wishes, recorded somewhere the family will find them in the first days after death. Not legally binding outside specific Scottish circumstances, but always treated seriously where documented. See Recording funeral wishes.
Updated expression of wishes forms with each pension provider. With the April 2027 IHT changes approaching, who is nominated matters more than it did under the older rules.
A key contacts list — GP, palliative care nurse, community matron, hospice contact, solicitor, financial adviser, pension and insurance providers — kept somewhere the family can find it.

The complete checklist version is in Estate planning checklist.

Hospice support for families¶

Hospices do not only support the dying. Most provide significant support to the family, both before and after the death.

Before the death: hospice social workers help with benefits, housing, and practical planning; family counselling and anticipatory-grief support are common; many hospices run carer support groups. None of this requires a referral — hospice teams can be approached directly by the family.

After the death: most hospices offer bereavement support to families, whether the death happened in the hospice itself, at home with hospice support, or in a care home that the hospice supported. Services vary but typically include one-to-one counselling, group sessions, and walking groups. Hospice UK maintains a directory of hospices at hospiceuk.org.

Having the conversation¶

Most families put this conversation off and many never have it explicitly. There is no perfect moment, but a few framings make the start easier:

A small opening question rather than a demand for a full plan: "Have you thought about what you would want if you became more unwell?" or "Is there anything you would want us to know, if the time came?"
An ordinary setting rather than a formal one — a cup of tea, a walk, after a TV programme that touches on the subject.
Explicit permission to not talk about it: "If you don't want to discuss this now, that's fine — I just want you to know I'm here whenever you do." This relieves pressure on a patient who is not ready.
Multiple short conversations over weeks rather than one heavy one.

What to cover, when ready: where the patient would prefer to be cared for; treatment preferences (especially CPR and life-sustaining treatment); funeral preferences in broad strokes; whether there is a will and where it is; who should make decisions if the patient cannot; financial information that would be helpful (pensions, insurance, debts, property).

If the patient does not want to talk, respect that. Some patients prefer to write things down or to have the conversation with a different family member. Some prefer to delegate to a clinician — the GP or a palliative care nurse can hold the conversation and feed back the substantive points.

If the patient is the one planning ahead and the family is not ready, recording wishes in writing is itself a kindness — it removes the burden of guessing later.

A practical sequencing¶

When a serious diagnosis lands, the most useful order:

Immediately (the week of the diagnosis)

Make a follow-up GP appointment to discuss advance care planning, palliative care referral, and the SR1 form for fast-tracked benefits.
Check whether the patient has a current will and a registered LPA; if either is missing, prioritise getting them in place.
If the patient lacks capacity already, get advice on the Court of Protection deputyship route — it cannot be skipped and takes time.

Within the first month

Confirm where the patient wants to be cared for; raise it with the GP or hospital team.
Ask about ReSPECT or DNACPR conversations; complete a form if appropriate.
Apply for any benefits the SR1 fast-tracks; check Carer's Allowance eligibility for the family member providing care.
Connect with the local hospice; ask about carer support and family services.

As care progresses

Update the expression of wishes forms with pension providers.
Record funeral wishes in writing.
Have the conversation with whoever is named as guardian for any under-18 children.
Make sure the family has the key contacts list and knows where the legal documents live.

What this guide doesn't cover¶

The legal mechanics of the LPA and ADRT in detail — see the dedicated guides.
Stopping benefits after a death — see Stopping benefits after a death.
The funeral arrangements themselves — see Arranging a funeral and Funeral costs.
Palliative care prescribing and clinical decisions — outside the scope of a planning guide; the GP, district nurse, and palliative care team are the right route.
Voluntary assisted dying / assisted suicide — currently unlawful across the UK; outside the scope of an end-of-life-planning guide.

If you're struggling, you don't have to do this alone. Samaritans (116 123, 24/7) | Cruse Bereavement Care (0808 808 1677) | Mind (0300 123 3393) | Hospice UK (hospiceuk.org)

Next: Recording funeral wishes

Last verified: 2 May 2026 against gov.uk DWP Special Rules for End of Life and gov.uk/carers-allowance.