Principles of advance care planning explained

Dr Kathryn Leask, Medical Defence Union (MDU) medico-legal adviser, explains clinicians' responsibilities for supporting patients with decisions around their end-of-life care.

elderly person holding hand of their care worker
(Photo: sukanya sitthikongsak/Getty Images)

Concerns were raised during the COVID-19 pandemic about inconsistencies in the way ‘do not attempt cardiopulmonary resuscitation’ decisions were made, leading to the CQC carrying out a review. As a result, a new guide had been jointly published by a coalition of partners called ‘Protect, Connect, Respect – decisions about living and dying well’.

The guide encourages people to think about their future care planning while they still have the mental capacity to fully participate in decisions about their care and to feel confident that their wishes will be considered.

It also emphasises the importance of high quality conversations with the person about their care and others they may wish to have involved, which may often include a person’s GP.

Six principles

The process of advance care planning should be voluntary and is likely to involve a number of conversations over time, with the opportunity for the person to change their mind if necessary. The guidance document sets out six high level principles for advance care planning in England (see below). 

The aim is to aid conversations between the person, practitioners and organisations involved in their future care. It allows a sense of ownership by the person for whom the care is being planned and it is hoped will drive improvements in inclusion, equality, and diversity.

Following these conversations a number of outcomes may result including:

  • The person may make an advance statement of their wishes, preferences and priorities and they may nominate a named spokesperson. This advance statement is not legally binding but provides useful information to guide decision making in the future when the person no longer has capacity to make decisions for themselves.
  • The person might make an advance decision to refuse treatment which is legally binding if it is valid at the time needed.
  • The person may arrange for a Lasting Power of Attorney for health and welfare whilst they still have capacity. This is also legally binding and allows a person to nominate a deputy to make decisions on their behalf if they lose capacity in the future.

Communicating plans

If you know a patient has made an advance decision to refuse treatment, this should be recorded in their notes. Whilst it is the responsibility of the person making the decision to make you aware of it, a 2019 legal judgment made it clear that where GPs are aware of a decision, they should communicate this with the relevant hospital team

While this judgment is centred on an advance decision, it would still be good practice to inform the hospital team of advance care plans by patients, if you are aware of them.

Healthcare professionals can discuss with a person their wishes about context-specific treatment including emergency care, cardiopulmonary resuscitation, treatment escalation plans and other treatment plans and make recommendations. Such plans are likely to develop over time, potentially involving others, such as friends and family.

Who can make a plan?

Anyone can have an advanced care plan but those known to be at increased risk of losing their mental capacity in the future may benefit most from this type of forward planning. This may include those diagnosed with dementia or a life limiting illness, such as incurable cancer or a progressive neurological condition.

Having conversations about advance care helps involve the person and their family or carers in their future management but is also helpful in addressing unrealistic expectations of what can be achieved.

It is acknowledged that conversations about advanced care plans aren’t for everyone. If a person declines the offer of discussing their care in this way, it can be revisited at a later date if they change their mind.

Universal principles for advance care planning

  1. The person is central to developing and agreeing their advance care plan including deciding who else should be involved in the process.
  2. The person has personalised conversations about their future care focused on what matters to them and their needs.
  3. The person agrees the outcomes of their advance care planning conversation through a shared decision making process in partnership with relevant professionals.
  4. The person has a shareable advance care plan which records what matters to them, and their preferences and decisions about future care and treatment.
  5. The person has the opportunity, and is encouraged, to review and revise their advance care plan.
  6. Anyone involved in advance care planning is able to speak up if they feel that these universal principles are not being followed.

Advance care plans, while not always legally binding, can allow you to explore the wishes of a patient about their end of life care. Your medical defence organisation can also provide you with further advice.

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