Advance care planning: concise evidence-based guidelines

Simon Conroy, MB CHB MRCP, Senior Lecturer/Geriatrician , Premila Fade, BSc MB BS MA FRCP, Consultant Geriatrician , Aileen Fraser, RGN NPD MSc(Nursing), Consultant Nurse , Rebekah Schiff, MB BS MRCP, Consultant Geriatrician , and on behalf of the Guideline Development Group ∗

Simon Conroy

Leicester Royal Infirmary

Premila Fade

British Geriatrics Society

Aileen Fraser

British Geriatrics Society

Rebekah Schiff

British Geriatrics Society

∗ This guidance was prepared on behalf of the multidisciplinary Guideline Development Group (GDG) convened by the British Geriatrics Society and the Royal College of Physicians with representation from the Royal College of General Practitioners, National Council for Palliative Care, Royal College of Nursing, Age Concern, Alzheimer's Society, Help the Aged, Faculty of Old Age Psychiatry (Royal College of Psychiatrists and British Society of Rehabilitation Medicine)

Introduction

At the core of current health and social care are efforts to promote patient-centred care, offer choice and offer the right to consent to or refuse treatment and care offered. This can be difficult to achieve when an individual has lost capacity – the ability to make one's own, informed decision. Advance care planning (ACP) may help in such scenarios.

Advance care planning has been defined as a process of discussion between an individual, their care providers, and often those close to them, about future care. The discussion may lead to:

an advance decision to refuse treatment (ADRT – a specific refusal of treatment(s) in a predefined potential future situation)

All or any of these can help inform care providers should the individual lose capacity.

In writing these guidelines, we have assumed that readers are familiar with making valid clinical decisions according to the Mental Capacity Act (MCA) 2005.

Methods

This concise guidance is extracted from Advance care planning: concise evidence based guidelines. Details of the development process are given in the full guidelines along with the list of references. Each research paper identified was graded using the appraisal tool developed for use in the National Service Framework for Long Term Conditions.

Background

The majority of individuals are happy to discuss ACP in primary and outpatient care settings, when their condition is stable, in anticipation of future ill-health. Advance care planning discussions with patients with long-term conditions or as part of a broad end-of-life care management programme increase patient satisfaction. Advance care planning discussions at entry into a care home may cause additional upset at a time of transition, but can be successful once the individual is more settled, given appropriate staff education and training. While most professionals and patients (>80%) agree that ACP discussions should take place around the time of diagnosis of a life threatening illness, some patients with terminal disease or serious illness requiring hospitalisation may not feel ready or able to do so.

Advance care planning discussions can be successfully led by a competent case manager; this could be a community matron or other specialist nurse, with the necessary expertise and knowledge base. Discussions should be a process rather than a single event.

Drafting clinically relevant, valid and applicable ACP documents is difficult; only 10–62% of ACP documents relating to hospital treatment contain sufficient information to direct care. Multifaceted interventions involving case managers helping individuals draft ACP documents and collaboration between primary and secondary care can increase ACP documentation in medical records and reduce the number of treatment decisions not in agreement with the individual's wishes from 18% to 5%. Section 25 of the MCA 2005, sets out the requirements an ADRT must meet to be valid and applicable. Preferences are less likely to change if they have been discussed with a doctor. Even so, up to one-third of individuals will change their ACP over time (months or years), influenced by changes in diagnosis, hospitalisation, mood, health status, social circumstances and functional ability.

Implementation

Barriers to increased ACP uptake can be categorised according to client/individual factors (receptiveness and cognitive impairment); family factors (availability, unaware of need for ACP or difficult relationship with the patient); case-manager factors (previous experience/lack of knowledge, level of comfort with discussion, lack of training); service factors (lack of funding, lack of time), doctors' beliefs about appropriateness and system factors (lack of communication with providers, legislation, providers unaware of case manager).