Introduction to advance care planning in the context of a COVID-19 outbreak

Learning objectives

By the end of unit 1, you will:

  • have knowledge of key terms used in advance care planning
  • be aware of the benefits of advance care planning during a COVID-19 outbreak
  • understand some of the misconceptions about 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 proposed interpretations of these below. Take a few moments to familiarise yourself with these.

Advance care planning

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

Advance Care Plan

The document that contains decisions about what care and realistic treatment someone would like to receive.

Mental capacity

A legal term which is used when a person is declared able to make their own decisions, including about their own care and treatment. Capacity is decision-specific, and people must be assumed to have capacity and given every opportunity to engage in shared decision-making.

Family Care Conference

A meeting to discuss advance care planning and produce an Advance Care Plan.

Statement of wishes and preferences for care

An overview of the day-to-day needs and preferences of a person’s care. This forms part of the Advance Care Plan.

Emergency care plan

Contains details of the care and realistic treatment a person would prefer, and wishes to refuse, in an emergency. This forms part of the Advance Care Plan.

Best interests decision making

Best interests decision-making is a process to make a decision on behalf of a person who is not able to understand, retain or weigh up the information to make that decision. This Best Interests principle is set out in legislation.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

A pre-recorded recommendation that cardiopulmonary resuscitation will not be attempted in the event that the persons heart and breathing are found to have stopped.

Power of Attorney

When a representative, for example a family member, is legally appointed to act on behalf of another person, for example a care home resident. In some regions Power of Attorney is split into decisions about financial matters and/or welfare. It is important to clarify whether Power of Attorney is for financial matters and/or welfare as a financial Power of Attorney may not have legal powers to decide about health and welfare issues.

It is also important to ask for original or certified copies of Power of Attorney documents relating to residents in the care home. It is important to clarify whether authority has been granted for the attorneys to refuse life sustaining treatment e.g. DNACPR.

Advance Decision to Refuse Treatment (ADRT)

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

Key principles of advance care planning

Key principles:

  • Ensure the rights of the resident are upheld at all times, for example involving them in conversations. Even where a person lacks capacity to make a decision steps should be taken to involve them in the process.
  • Capacity is specific to the decision being made at that time and best interests is not simply what the professional or family think is in the person’s best interest but is a process required by law.
  • Explore the possibility of having these necessary discussions in-person in the care home if local COVID-19 restrictions allow.
  • Remember to manage expectations. Advance care planning should discuss realistic treatment options with care home residents and their loved ones.

Advance care planning during a COVID-19 outbreak

Like all care documents, it is important that Advance Care Plans are developed or updated regularly during COVID-19 to ensure residents and those involved in their care planning have an opportunity to discuss wishes and preferences for care, in the context of COVID-19. This is more important than ever for residents because of the potential for rapid deterioration from COVID-19 or other health conditions.

The information recorded will support decision making, particularly in emergency situations, and ensure residents receive care according to their wishes during COVID-19. Having advance care planning discussions also provides an opportunity for residents and family members to discuss COVID-related concerns. For example, planning ways to reduce the impact of social distancing that has occurred during COVID-19.

Who does advance care planning apply to?

It is recommended that all residents have an Advance Care Plan that records preferences for care at any time, but especially during COVID-19. This is a voluntary process and a resident may not wish to develop a care plan, but they should be offered the opportunity to do so. It is important to remember that advance care planning is an ongoing process, and Advance Care Plans can be updated or developed if circumstances or wishes change.

Potential benefits of advance care planning during a COVID-19 outbreak

  • supports person-centred care and ensures a resident’s individual needs and preferences are known to health and care professionals
  • helps to protect residents’ rights
  • empowers residents and family members to be involved in decisions about care planning
  • addresses anxieties and worries about a resident’s care during a COVID-19 outbreak
  • helps ensure the right care is delivered in the right place at the right time
  • ensures care is responsive as needs or circumstances change during a COVID-19 outbreak
  • improves experiences of care for residents, family members and staff

Misconceptions about advance care planning during a COVID-19 outbreak

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 care home residents 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 resident 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. During a COVID-19 outbreak, 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 resident will have capacity to participate in these discussions and decisions.