Advance Care Planning (ACP) and Advance Directives (AD)

ACP is the process of discussion and planning for future health care in the context of anticipated deterioration of health. Not everyone will choose to participate in ACP.

Advance care planning:

• involves the patient, health care professionals and family/carers
• incorporates the patient’s beliefs, values, culture, preferences for care, current and anticipated medical status and treatment options
• needs a competent patient to participate
• should take place early in the course of a terminal illness but can happen at anytime
• may result in:
  • a conversation and shared understanding between patient and health professionals
  • documentation of an ACP plan
  • the writing of an Advance Directive (see below)
  • the appointment of an enduring power of attorney/surrogate decision-maker
• is the articulation of wishes, preferences, values and goals
• respects personal autonomy and medical reality
• should be used to inform decision-making, even in acute medical emergencies
• should be regularly reviewed and updated – it is a flexible ‘living’ document
• is open to change, revision, and cancelation
• is not confined to medical issues – may include spiritual or interpersonal issues

Barriers to ACP

• it is time consuming
• advanced cognitive impairment (e.g. from dementia). Currently, fewer than 1% of those with a diagnosis of dementia are felt to have an ACP in place. The formulation of an Advanced Care Plan should be done as early as possible in the course of a dementing illness so that the affected individual retains a greater degree of capacity to enable its completion
• there is sometimes a reluctance to discuss death and dying and the conversation may be difficult to initiate
• some patients prefer benign paternalistic medical care
• there may be an element of misinformation about the processes/rights/law
• acute/emergency interventions may not allow for consideration of the patient’s history
• the ‘disability paradox’ – with age and emerging health disabilities (especially cognitive) there is a tendency to moderate the assertiveness of stated care wishes

Advance directive (AD) (‘Living will’)

• an AD is a written or oral directive/instruction about preferences for future care
• the process for completing advance directives should be raised early in the course of an illness when the patient is competent, free of undue influence and sufficiently informed
• the existence of an AD document or conversation needs to be established
• it becomes effective if the person loses capacity
• it may encompass refusal of, or consent to, a particular treatment
• there is no medical obligation or duty to provide treatments not offered, not effective or unavailable
• clinicians are obliged to give effect to an AD but in emergencies medical indications to save life may take priority (if AD not known about)

Competency or capacity

• an individual’s ability to perform a particular task at a particular point in time e.g. a decision regarding their current or future health care includes competency and capacity
• all adults are presumed to have capacity unless it is proven otherwise
• in order to demonstrate capacity, three elements must be met:
  • the person is able to understand and appreciate key basic facts that are relevant to the decision to be made
  • the person is able to weigh the risks and benefits of any given course of action
  • the person is able to express a choice that is made in the absence of coercion
• competency may fluctuate depending on the issues under consideration
• the patient needs to be able to understand information relevant to the decision, to reason and deliberate, to retain the information (even for only a short time), to communicate by any means
• capacity does not necessarily imply rationality
• if capacity is not possessed decisions must be taken by others in that person’s best interests and in the least restrictive manner possible

Legally authorised proxy/surrogate decision-maker

• health care practitioners can become familiar with the particular legal requirements by contacting relevant guardianship authorities for up-to-date information. The most up to date information can be found at https://www.myacp.org.nz
• all decisions must be made with the patient’s best interest in mind and tend to be conservative and life-affirming

Testamentary Capacity

• this is the legal and mental ability to make or alter a valid will
• the testator must have knowledge of extent and value of their property, knowledge of their natural beneficiaries, and the ability to communicate this knowledge