Introduction to advance care planning

Learning objectives

By the end of unit 1, you will:

  • Have knowledge of key terms used in advance care planning
  • Understand the key principles of advance care planning
  • Be aware of the benefits of advance care planning
  • Understand some of the misconceptions about advance care planning

In the video below, Andy Wells, Communication Skills Lead at East Lancashire Hospitals Trust, introduces some of the key concepts in advance care planning.

Definition of Terms

Throughout this training we use a number of technical terms associated with advance care planning. These can mean different things to different people, so we have provided interpretations of these below. Take a few moments to familiarise yourself with these.

Advance care planning

The process of making decisions about future care options and preferences. This can also sometimes be called future care planning or anticipatory care planning.

Advance care plan

A document that records decisions about the care someone would prefer to receive.

Mental capacity

A legal term which is used when an individual is declared able to make their own decisions, including about their own care and treatment.

Statement of wishes and preferences for care

An overview of the day-to-day needs and preferences of an individual’s care. This forms part of the advance care plan.

Emergency care plan

Contains details of the care and treatment an individual would prefer, and wishes to refuse, in an emergency. This forms part of the advance care plan.

Best interests decision making

When a decision is made on behalf of an individual who lacks mental capacity to make their own decisions, with their best interests in mind.

Do Not Attempt Cardiopulmonary Resuscitation

Often shortened to DNACPR or sometimes Do Not Attempt resuscitation (DNAR). This is a pre-recorded decision to not receive cardiopulmonary resuscitation. It is not a legally binding document, but is a record of an individual’s wishes regarding resuscitation. (DNACPR is discussed further in Unit 2 and Unit 7).

Advance Decision to Refuse Treatment (ADRT)

This is a legal document in England and Wales which outlines treatment that is not wanted, and under what circumstances.

Power of attorney

When a representative, for example a family / carer, is legally appointed to act on behalf of another person.

Who does advance care planning apply to?

It is recommended that all individuals, especially those who are older, frail, or with a life-shortening condition, have an advance care plan that records their preferences for care at any time. Advance care planning should be promoted as something that includes current goals, plans, and living well now; where decisions made within relationships are recognised, and as an opportunity to contingency plan for serious illness.

Remember: This is a voluntary process and an individual may not wish to develop an advance care plan. However, they should be offered the opportunity to do so.

Key principles of advance care planning

Key principles:

There are a number of key principles associated with advance care planning. It is likely you will be familiar with some if not all of these, and they will be revisited throughout this resource.

  • Advance care planning is an individualised approach. The preferences of the individual concerned should be at the very heart of the advance care planning process.
  • Ensure the rights of the individual are upheld at all times, for example involving them in conversations. Even where an individual has fluctuating mental capacity (in line with the Mental Capacity Act 2005)*, steps should be taken to involve them in the advance care planning process.
  • Remember to manage expectations. Advance care planning should discuss realistic treatment options with individuals and their family / carers.
  • Advance care planning is a voluntary process. An individual does not have to make an advance care plan if they do not wish to do so.
  • Advance care plans are not set in stone. They can be revisited and updated over time especially if circumstances or wishes change. Like all care documents, it is important that advance care plans are developed or updated regularly to ensure individuals and those involved in their care planning have an opportunity to discuss wishes and preferences for care.

* Mental capacity is discussed further in Unit 2 and in the Resources section of this website under Legislation.

Potential benefits of advance care planning

  • Supports person-centred care and ensures that an individual’s personal needs and preferences are known to health and care professionals and family / carers
  • Helps to protect individuals’ rights
  • Empowers individuals and family / carers to be involved in decisions about care planning
  • Addresses anxieties and worries about an individual’s care
  • Helps ensure the right care is delivered in the right place at the right time
  • Ensures care is responsive as needs or circumstances change
  • Improves experiences of care for individuals, family / carers and staff

In the video below, Kieran Potts, Ambulance Clinician for North West Ambulance Service describes the difficulties that ambulance crews can encounter when arriving to attend to very sick individuals considered to be approaching end of life, whose wishes and preferences have not been clarified in an advance care plan.

  • Reflective activity: Kieran talks about the role of communication with individuals and family / carers. This is a key theme in advance care planning, and will be revisited throughout this resource.

    Take a few moments to jot down some of the key points that Kieran makes about communication, and think about how you might apply them in your own practice. Keep these notes so that you can add additional ideas to them as you work through the resource.

Misconceptions about advance care planning

Misconception
Advance care plans can be applied generally to groups of people experiencing a certain type of illness, for example dementia or heart failure

Reality

No. Advance care planning is person-centred and responds to individual needs and preferences of individuals and their families.

Misconception
Advance care plans cannot be changed

Reality

No. Advance care plans are updated when appropriate, for example if wishes change or if the health of the individual changes. Advance care plans should be thought of as a living document.

Misconception
Advance care plans should be done only when someone becomes unwell

Reality

No. It is helpful to be proactive about future care. Health can deteriorate very rapidly so it’s best to be as prepared as possible for making care decisions. Having conversations sooner increases the likelihood the individual will have capacity to participate in these discussions and decisions.

 
Misconception
Having an advance care plan means an individual is not for resuscitation

Reality

No - A resuscitation discussion can form part of an advance care planning discussion, but a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) is a stand-alone document.

Misconception
An advance care plan means we don’t need to discuss anything further with the individual

Reality

No – an advance care plan is to be used to guide/inform the care of an individual when they become unable to share their thoughts and opinions.