Advance Care Planning

Introduction

Advance care planning is the process by which someone thinks about, discusses and records what they would want if they became unable to decide for themselves. It matters because a large proportion of people lose capacity in the last weeks of their lives - through delirium, dementia, stroke, metastatic disease or simply the drowsiness of dying - and because the alternative is that decisions get made in an emergency, by people who do not know them, on the basis of what is easiest to justify.

It is not a form-filling exercise, and it is not the same as a DNACPR decision. It is a conversation, revisited over time, of which a written record is only the residue. The NHS England Universal Principles for Advance Care Planning frame it around six ideas: the person is central, personalised conversations focus on what matters to them, it is voluntary, it should be shared, it should be recorded, and staff should be confident and competent in having these conversations.²

For finals, the examinable content divides in two: the legal framework - the Mental Capacity Act, capacity assessment, and the specific tools with their specific legal weight - and the communication skills of raising the subject without extinguishing hope. Both appear regularly, and the legal detail is the part most often got wrong.

The Mental Capacity Act 2005

The Act applies in England and Wales to anyone aged 16 or over. Scotland is governed by the Adults with Incapacity (Scotland) Act 2000 and Northern Ireland by the Mental Capacity Act (Northern Ireland) 2016, which differ in detail - most notably in the terminology for powers of attorney.¹

Assessing capacity

Capacity is decision-specific and time-specific. A patient may lack capacity to decide about chemotherapy but retain capacity to decide where they want to live, and someone delirious at midnight may have capacity at nine the next morning. The assessment is a two-stage test:

Failing any one of the four functional elements means the person lacks capacity for that decision. The commonest error in practice is to conclude someone lacks capacity because they disagree with the recommendation - which principle three explicitly forbids. The second commonest is to record "confused, lacks capacity" without documenting either stage.³

Best interests

Where a person lacks capacity and there is no valid advance decision or attorney, the decision-maker acts in their best interests, following the section 4 checklist:

• Consider whether the person is likely to regain capacity, and whether the decision can wait until then
• Encourage their participation in the decision as far as possible
• Take into account their past and present wishes and feelings, particularly anything written down while they had capacity
• Take into account the beliefs and values that would be likely to influence their decision, and any other factors they would consider
• Consult anyone named by the person, carers, family, any attorney and any deputy
• Where there is no one appropriate to consult and the decision concerns serious medical treatment or a change of accommodation, instruct an Independent Mental Capacity Advocate (IMCA)
• The decision-maker must not be motivated by a desire to bring about the person's death when the decision concerns life-sustaining treatment

The tools of advance care planning

Distinguishing these is the single most examinable part of the topic, because they carry very different legal weight.

When an advance decision does not apply

An ADRT is not binding if it is invalid or not applicable. It is invalid if the person has since withdrawn it, has subsequently created an LPA giving the attorney authority over that treatment, or has done something clearly inconsistent with it. It is not applicable if the treatment in question is not the one specified, if the circumstances described are absent, or if there are reasonable grounds to believe circumstances now exist that the person did not anticipate and which would have affected their decision. If there is genuine doubt, treat while clarifying - and apply to the Court of Protection if the doubt cannot be resolved.

DNACPR and ReSPECT

A DNACPR decision concerns one intervention only: attempted cardiopulmonary resuscitation in the event of cardiorespiratory arrest. It says nothing about antibiotics, fluids, surgery, transfusion, or admission to hospital - and the belief that it does causes real harm, with patients receiving less attentive care because a form is in the notes.

• It is a clinical decision. Where CPR would not work, it need not be offered, and a patient cannot demand a treatment that would be futile.
• But it must be discussed. Following R (Tracey) v Cambridge University Hospitals (2014), there is a legal duty to consult the patient before placing a DNACPR in their notes, unless doing so would cause them physical or psychological harm - and mere distress is not sufficient reason to avoid the conversation.⁶
• Where the patient lacks capacity, those close to them must be consulted, as established in Winspear v City Hospitals Sunderland (2015)
• Blanket decisions are unlawful. The CQC's review of DNACPR practice during the COVID-19 pandemic found decisions applied to groups - care home residents, people with learning disabilities - without individual assessment or discussion, which is both unlawful and discriminatory.⁸
• Review it. A DNACPR made during an acute illness may not be appropriate once the person recovers.
• Transfer it. A decision that does not travel with the patient to the ambulance, the care home or the hospice will not be honoured.

ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) was developed to address the narrowness of the DNACPR form. It records a summary of the person's priorities and clinical recommendations for a range of emergency situations - whether they would want admission, intravenous antibiotics, non-invasive ventilation, critical care - with CPR as one item among several. It is a recommendation rather than a legally binding instruction, and its value lies in the conversation it structures.⁵

Having the conversation

Who, and when

A useful trigger is the surprise question: "would I be surprised if this patient died within the next twelve months?" If the answer is no, advance care planning is appropriate. Other triggers include a new diagnosis of a progressive illness, a hospital admission with deterioration, admission to a care home, increasing frailty, a new diagnosis of dementia (where the conversation must happen early, while capacity is intact), and after recovery from a critical illness.

How

1. Check readiness. "Some people find it helpful to think ahead about their care. Would that be something you would like to talk about, now or another time?" A no is a legitimate answer, and should be revisited rather than pushed.
2. Explore understanding of the illness and what they have been told
3. Ask what matters to them - not what treatments they want. "What is most important to you as you look ahead?" and "what worries you most?" produce far more useful answers than a list of interventions.
4. Explore specific fears - being in pain, being a burden, dying in hospital, losing independence, what will happen to a dependent relative
5. Discuss what might realistically happen, including deterioration, and what the options would be
6. Identify who they would want to speak for them, and explain how an LPA works if they want one
7. Record it, in their words where possible, and give them a copy
8. Share it - GP, out-of-hours service, ambulance service, care home, hospice, and any electronic palliative care coordination record
9. Review it, particularly after any change in condition

Special situations

• Dementia - plan early, while capacity is retained. This is the group for whom advance care planning offers most and is most often left too late.
• Learning disability - capacity must be assessed for the specific decision with all practicable support, and never assumed to be absent. Accessible information, easy-read documents and involvement of those who know the person well are essential, and the LeDeR reviews have repeatedly found decisions made without proper assessment.
• Young people aged 16 to 17 - the Mental Capacity Act applies, but they cannot make a binding advance decision to refuse treatment; under-16s are assessed for Gillick competence
• Mental illness - the Mental Health Act may authorise treatment for a mental disorder despite an advance refusal, but an ADRT still applies to physical health treatment
• Organ and tissue donation - England, Wales and Scotland all now operate an opt-out (deemed consent) system for organ donation, though families are still consulted, and a person's recorded decision should be part of the planning conversation
• Implantable cardioverter-defibrillators - discussing deactivation should form part of advance planning in anyone with a device and a progressive illness, rather than being addressed for the first time when they are dying

Pitfalls

Outcomes

The evidence for advance care planning is reasonably good where it is done as a facilitated conversation rather than a form. The most-cited randomised trial, in elderly Australian inpatients, found that advance care planning improved concordance between patients' wishes and the care they received, increased family satisfaction, and reduced anxiety, depression and post-traumatic stress in surviving relatives.⁷

Observational evidence also links it to fewer unwanted hospital admissions and less invasive treatment near the end of life, and to a greater likelihood of dying in the preferred place. What it does not do is reduce anxiety in the patient by avoiding the subject - the fear that raising it causes harm is not borne out.

The practical conclusion is that the value lies in the conversation and in sharing what it produces, not in the document itself. A carefully written advance decision sitting in a drawer at home helps nobody at three in the morning; a brief, well-recorded, well-shared conversation about what matters to someone changes what actually happens to them.