Learning objectives

By the end of unit 1, you will:

  • Understand the key principles of advance care planning
  • Be aware of who should be involved in advance care planning discussions
  • Have knowledge of the misconceptions about advance care planning

Who is advance care planning for?

Advance care planning is relevant to all adults over the age of 18 but is of particular importance for individuals who are older, frail, or with a progressive life-limiting condition (e.g., organ failure, terminal illness, dementia). Where possible, it is important to inform people receiving care and those important to them about advance care planning early in the illness trajectory, prior to a significant decline in health.

Early discussions ensure wishes and preferences are known should a person’s health deteriorate, or they are unable to share their views in the future. It also provides an opportunity for people to understand and consider different aspects of future care planning over a period of time, rather than in an emergency or highly emotive situation.

In the video below, Professor Kevin Brazil, Queen’s University Belfast provides an Introduction to advance care planning.

The role of Community and District Nurses

Community and district nurses are particularly well placed to introduce and facilitate advance care planning discussions because:

Illness trajectory

You deliver care and support at various stages of illness, providing the opportunity for early conversations in an environment those receiving care may feel more comfortable in. You also have a holistic view of their health care needs and social circumstances.

Rapport

You are likely to have ongoing communication with individuals receiving care and those important to them. This provides an opportunity to build rapport which is essential in advance care planning. Individuals are likely to be more comfortable having these discussions with someone they know and trust.

Integrated approach

You have the opportunity to build on current health assessments and consider an individual’s future care needs. This provides an opening for discussions on current goals of care and planning ahead to be prepared in the case of a change in health status, an emergency and end-of-life.

In the video below, Karen Bowes, Royal College of Nursing discusses why community and district nurses are well placed to start advance care planning conversations and some of the key principles of the process.

Key principles of advance care planning

The key principles below build on the information provided by Karen Bowes and are reflected throughout this resource.

  • Advance care planning is a voluntary process. An individual does not have to record their wishes and preferences for care if they do not wish to. This decision should be respected and documented.
  • Advance care planning is an individualised approach. The wishes of the individual concerned should be at the centre of the advance care planning process.
  • It is important to ensure the rights of the individual are always upheld, for example, where possible involving them in conversations. Even when a person has fluctuating mental capacity, steps should be taken to involve them in the process (in line with Mental Capacity legislation discussed in Unit 3). Capacity is specific to the decision being made at that time and best interests decisions are not simply what the professional or family think is in the person’s best interest. This is a process required by law.
  • Remember to manage expectations. Advance care planning should discuss realistic treatment options with individuals and their loved ones.
  • Advance care planning is an ongoing process, decisions are not set in stone. Wishes and preferences for care can evolve over time and should be revisited especially if circumstances change.

Who participates in an advance care planning discussion?

The following people are likely to be involved in the process of advance care planning.

The individual

Advance care plans are tailored to the individual. The only way to find out exactly what an individual would want is to ask them directly – assuming they have mental capacity until proven otherwise. Mental capacity legislation (discussed more in unit 3) can explain when and why an individual may not be able to take part in an advance care planning discussion.

Those important to the individual

Where possible, people who are important to the individual should be involved in advance care planning discussions. Therefore, the individual should be asked before the advance care planning discussions if there is anyone they would like to be involved. This may be a partner, family member, carer, or friend. In a community environment, discussions may occur informally; in this instance, it is important to recommend that the individual shares their wishes with those important to them.

Community/district nurse most involved in the individual’s care

Community and district nurses play a vital role in introducing advance care planning discussions, and, given their role and knowledge of the individual are well placed to incorporate these conversations as a natural and routine part of the assessment process.

Health care providers and General Practitioners

It is important to work with other health care professionals to develop and deliver advance care plans. Multi-disciplinary working ensures the needs of individuals are understood and shared.

Legal professionals

Legal professionals such as a solicitor may be involved if an individual would like to legally appoint power of attorney. In this process a representative (generally a person important to the individual making the plan) is legally appointed to act on behalf of the individual.

Misconceptions about advance care planning

Misconception
Advance Care Plans cannot be changed

Reality

Advance care planning is an ongoing process. Advance care plans should be reviewed and updated. Especially if wishes change or if the health of the individual changes.

Misconception
Advance Care Plans should only be made when someone becomes unwell or are at the end-stage of life

Reality

Advance Care Plans are beneficial for everyone. It is helpful to be proactive about future care. Health can deteriorate very rapidly so it is 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
Early advance care planning discussions suggest disease progression or a poor prognosis

Reality

Early discussions are important. They ensure that the individual’s wishes are recorded if the individual might lose the capacity to participate in these discussions and decisions in future.

Misconception
Advance care planning is only about treatment or Do Not Attempt Cardiopulmonary Resuscitation

Reality

Treatment is only one component of advance care planning. It is a holistic process that should promote personal, spiritual, legal, clinical, and financial considerations.

Misconception
Advance care planning is the role of a General Practitioner or Specialist

Reality

All health professionals can play a role in advance care planning by listening to the wishes, preferences, and concerns of those receiving care and empowering people to be involved in shared decision-making.

Reflective Activity

  • Please take a few minutes to jot down some of the key points from this unit.
  • Have a think about how you might apply or share this learning with others.