Key issues in advance care planning

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
• an individual should not be treated as unable to make a decision because you think they are making an unwise decision
• if an individual is assessed as being unable to make decisions, the decision maker should consider what is in the best interests of the individual
• when making a best interests decision, the choice that interferes least with an individual’s rights and freedoms, should be chosen

Source: adapted from Marie Curie.

Advance care planning takes place when an individual has mental capacity, ensuring their wishes and preferences of care are known. All decisions must be made on an individual basis, with supporting evidence. It is important that individuals are supported to make decisions about their care and treatment, and that the rights of individuals with cognitive impairments are protected.

Links to specific mental capacity legislation in the UK nations can be found in the Resources section of this website under Legislation.

Statement of wishes and preferences for future care

A statement of wishes and preferences for care is a record of what is important to an individual and how best to meet their care needs on a day-to-day basis. This aspect of advance care planning is not legally binding but will contain vital information about the individual.

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

• Psychological support, for example support with distress or worries
• Social support, for example contact with family and friends
• Spiritual support, for example ensure relevant faith or religious needs are met

Emergency care planning

Emergency care planning forms part of the advance care plan. It supports the decision-making of health and social care providers by providing clinical recommendations on the care that an individual would or would not like to receive in an emergency situation. 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 care providers may need to take different actions to the wishes that have been expressed.

Where relevant, the emergency care plan should consider the following:

Cardiopulmonary Resuscitation and Do Not Attempt Resuscitation (DNACPR):
for example, views on having their heart restarted
Want to learn more?
For more information on DNACPR

Advance Decision to Refuse Treatment (ADRT):
for example, treatments not wanted and in what circumstances
Want to learn more?
ADRT principles are explored further here by NHS England

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

 

Anticipatory medication:
for example, pain medication or decisions regarding treatment

Preferred place of care:
for example, home or hospital

 

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).

Advance care planning in emergency care situations is discussed further in Unit 6.

Best interests decision making

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

Five principles of best interests decision making, when an individual lacks capacity:

• encourage the individual to participate in decision making as far as possible (consider alternative means of communicating if appropriate)
• consider whether it is likely that the individual 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 individual by speaking with appropriate individuals, for example an individual nominated through power of attorney or family / carers
• consider any alternative actions that would have the same effect but less impact on the individual’s rights.

It is important to inform family / carers that there are legal frameworks in place to protect people’s rights and best interests, and how those are being followed. This might include information on the Mental Capacity Act and current information on appealing health and social care decisions.

Want to learn more? See NICE guidelines on shared decision making.

Links to the Mental Capacity Acts for the UK Nations (‘Adults with Incapacity Act’ in Scotland) can be found in the resource section of this website under Legislation.

Who participates in advance care planning discussions?

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

Why advance care planning is important

This Unit has mainly focused on key issues and components of advance care planning. The following unit, Unit 3, will focus on how to complete an advance care plan. Before moving on to this, here is a video from a family / carer as a reminder of the importance of the process, and what aspects may be important to the individual and family / carers.

Want to learn more?

For further information you might like to:

• Listen to The Hospice Podcast.
• Watch the video Advance Care Planning: An Introduction - Care Home Support, which was designed for use in Care Homes but contains information applicable to other settings.
• See NHS England Document: Universal Principles for Advance Care Planning (ACP).