Advance care planning in the context of a COVID-19 outbreak

Learning objectives

By the end of unit 2, you will:

  • be aware of mental capacity legislation and its application during COVID-19
  • understand key components of advance care planning during a COVID-19 outbreak
  • recognise the importance of documenting wishes and preferences in the context of COVID-19
  • have knowledge of who is involved in advance care planning discussions

Mental capacity

Mental capacity legislation provides a legal framework for supporting people aged 16 and over to make decisions about their care and treatment. Legislation and the core values on which mental capacity is based should be considered in preparation for advance care planning.

The core values on which mental capacity is based are as follows:

  • always assume an individual has capacity to make a decision, unless it is established following the appropriate assessment that they lack capacity.
  • an individual should be supported to make their own decisions, where possible.
  • a person should not be treated as unable to make a decision because you think it is an unwise decision.
  • if a person is assessed as being unable to make decisions, the decision maker should consider what is in the best interests of the person.
  • when making a best interests decision, the choice that interferes least with a person’s rights and freedoms should be chosen.

Source: adapted from Marie Curie.

Ideally, advance care planning takes place when an individual has mental capacity, ensuring their wishes and preferences of care are known.  During a COVID-19 outbreak, mental capacity legislation stills applies and all decisions must be made on an individual basis, with supporting evidence.  While COVID-19 presents many challenges, it is important that people are supported to make decisions about their care and treatment, and that the rights of people with cognitive impairments are protected.  

Links to specific mental capacity legislation in the UK, including guidance that has been updated during COVID-19, can be found in the additional resource section.

Watch the video below to hear Professor Nancy Preston talk about advance care planning during COVID-19.

Statement of wishes and preferences for future care

A statement of wishes and preferences for care is a record of what is important to a resident and how best to meet their care needs on a day-to-day basis.  This may include psychological (well-being), social (visiting) and spiritual support (their beliefs), and should be considered in the context of COVID-19.

It is important to discuss these topics during COVID-19, because the outbreak is likely to have raised concerns about care and treatment needs on a day-to-day basis, and in the event an individual becomes unwell.  It is important to remember that COVID-19 has imposed social restrictions on residents and family members, which may have a significant impact on well-being for both parties.  Advance care planning discussions provide a platform for these concerns to be raised and to consider how the impact of COVID-19 can be reduced.

A statement of wishes and preferences for care and treatment should consider the following:

  • Psychological support, for example access to person-centred meaningful activities
  • Social support, for example contact with family and friends
  • Spiritual support, for example ensure relevant faith or religious needs are met

Emergency care planning

Developing an Emergency Care Plan is particularly important for residents during a COVID-19 outbreak.  It supports the decision-making process of health and social care professionals during the pandemic by providing concise, clinical recommendations on the care and realistic treatment an individual would like to receive in an emergency situation and the care and treatment they would wish to avoid. However, it is important to manage expectations during emergency care planning discussions. For example, where there are medical indications that an intervention is no longer clinically appropriate, health and care professionals may be required to take different actions to the wishes that have been expressed.

The emergency care plan forms part of the Advance Care Plan, and should where relevant consider the following:

Cardiopulmonary Resuscitation (CPR) and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR):
for example, shared understanding of whether CPR might be successful and, if it might, whether attempting CPR would be wanted. *

Advance Decision to Refuse Treatment (ADRT) (legal document in England and Wales):
for example, treatments not wanted and in what circumstances

Co-morbidity management:
for example, decisions about managing other long-term conditions alongside COVID-19, for example heart failure or dementia

Anticipatory medication:
for example, pain medication or decisions regarding treatment in the event a resident contracts COVID-19

Preferred place of care:
for example, the care home or hospital

* It is important to remember that DNACPR is not legally binding itself – it is a tool to inform doctors. If a resident or family member wishes a DNACPR to be legally binding, this should be included in an Advance Decision to Refuse Treatment document (legal document in England and Wales).

There are templates that can be used to support emergency care planning.  One such approach is the Recommended Summary Plan for Emergency care and Treatment (ReSPECT).

Watch the video below to hear the advice Antia Astle MBE would give to care staff on how to support advance care planning.

Best interests decision making

Best interests decision making is when a choice about care is made on behalf of a person who is not able to decide for themselves because they are assessed as lacking capacity. This decision must be taken with the person’s best interests in mind, and be informed by what the person would want. Best interests decisions must not be made based on a person’s age, appearance or condition, but consider the decision that the individual would have made if they had capacity.

In England and Wales there is a 9-point Best Interests checklist which must be followed and fully documented in the care record.

When a person lacks capacity, here are five principles of best interests decision making:

  • encourage the resident to participate in decision making as far as possible
  • consider whether it is likely that the person will regain capacity and if so, when this is likely to happen so that you can consider delaying the decision
  • consider past and present wishes, beliefs and values, including any written statements when the individual had capacity
  • ascertain the wishes of the resident by speaking with appropriate individuals, for example a person nominated through power of attorney or family members
  • consider any alternative actions that would have the same effect but less impact on the person’s rights

Family members are likely to be concerned about the care and treatment offered to their loved one during a COVID-19 outbreak.  It is important to inform family members that there are legal frameworks in place to protect people’s rights and best interests, and how those are being followed by the care home.

Who participates in advance care planning discussions?

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

Residents and family members

Residents should always be involved in advance care planning wherever possible.  You should assume they have capacity to be involved in decision-making.  Mental capacity legislation explains why and when a person may not be able to take part in advance care planning discussions, though it is still best-practice to include them if you can.  Family members should also be involved.  Therefore, residents should be asked before advance care planning discussions if there is anyone they would like involved.

Care home staff

Care home staff play a vital role in advance care planning discussions.  Staff are likely to have established relationships with residents and their family members that will support advance care planning discussions.  Residents and family members are likely to be more comfortable having advance care planning discussions with staff they trust.

Health professionals and General Practitioners (GPs)

It is especially important during COVID-19 to maintain best practice working with health care professionals and General Practitioners (GPs) to develop and deliver personalised care and support plans.  Support from health professionals, such as specialists in geriatric medicine, care home support teams, mental health or palliative care, should also be sought if needed.  Multi-disciplinary working ensures the needs of residents are understood and their care preferences are given voice.  A clinician must be involved in the development of emergency care plans and has a key role in ensuring care preferences are shared with out-of-hours and community health professionals.   Further information on recording and sharing Advance Care Plans is provided in Unit 4.

Legal professionals

Legal professionals such as a solicitor may be involved if a resident would like to legally appoint a representative to act on their behalf for financial and / or health and care matters, for example through power of attorney.