CONTRA: Advance care planning- saint or sinner?

Claud Regnard, prof. Jane Seymour

CONTRA

Claud Regnard, Jane Seymour

Advance care planning (ACP) has become the holy grail for many healthcare professionals, lauded as a ‘key means of improving care for people^’1 and giving birth to an international society of ACP.² ACP is growing a life of its own because of its esteemed aims of greater empowerment through shared decision making. However, little in life is ever completely benign:

• ACP is often misspelt ‘advanced’ implying a superior form of care planning. 
• ACP has given birth to the entity of an ‘advance care plan’, something which has no agreed clinical or legal definition and is easily confused with everyday planning of care.
• The self-fulfilling belief in ACP is driving organisations to create ACP targets. These often set standards of high percentages of patients having advance care plans, contrary to a key principle of ACP that its use by patients is entirely voluntary. Individuals have the right to refuse to plan their care, however uncomfortable or irritating this may be for healthcare professionals. Targets have driven some to make ACP a checklist to be gone through in every individual.
• While ACP may be needed more often in serious illness, its persisting links to end of life care is creating an impression that its primary use is in such patients, sidelining the many of individuals with normal or long prognoses who may wish to plan their care in advance.  
• Shared decision making (SDM) is at the heart of ACP but it is rare for the two to be mentioned together. This is not surprising as SDM tends to focus on decision-support aids,³ while ACP concentrates on how to record the care that has been planned in advance.
• The fact that neither ACP nor SDM have the requirements of capacity legislation or ethics at their core underscores the unbalanced focus on adults who have capacity for their care decisions. In the UK there are examples of an ‘advance care plan’ being written on behalf of a patient with advanced dementia without careful consideration of their previous wishes and feelings, beliefs and values. This is despite the 2005 Mental Capacity Act in England and Wales requiring health professionals to go through the minimum of a nine-point checklist when looking at an individual’s best interests.

ACP is in danger of becoming a routine target for healthcare services and a checklist of care. This risks losing the core message of ACP as a shared dialogue. Action is urgently needed:

1. ‘Advance care planning’ is easily misspelt and misinterpreted but has become so established that changing the name would be difficult. In contrast, the term ‘Advance care plans’ should become obsolete especially as countries that have capacity legislation already have advance directives with clear legal definitions and terminology, while those that do not have such legislation usually have clinical guidance with agreed descriptors.⁴
2. Targets should audit the decision-making process itself and its compliance with capacity legislation, not simply the presence or absence of documentation.
3. Shared decision making needs to sit at the centre of advance care planning, built on the requirements of any legislation and ethical principles around capacity.
4. International agreement is needed on the definitions of anticipatory care planning which can be applied to individuals who lack capacity and advance care planning which requires an individual to have capacity for specific decisions.

The Liverpool Care Pathway⁵ was lauded internationally as a valued planning tool by many prestigious organisations, but in 2013 it was accused of being a ‘tickbox’ exercise and by the end of 2014 it was no longer in use in the UK. The acolytes of advance care planning should be working now to avoid the same happening to ACP. ACP’s promotion as a saint needs to be reconsidered to avoid it being rejected as a sinner.