Advance Care Planning and Advance Care Directives

What is advance care planning?

Advance care planning is a process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known so they can guide decision-making at a future time when that person cannot make or communicate his or her decisions.² Advance care planning is based on principles of self-determination, dignity and avoidance of suffering.³

Tips for successful advance care planning conversations⁶

• The individual needs to be ready for the conversation and mentally capable of participating – conversation cannot be forced; at the same time clinicians, in most instances, need to take the lead in initiating such conversations.
• Capacity to engage in conversation must be maximised by treating any transient condition affecting communication and optimising sensory function (e.g. by ensuring the patient’s hearing aid is being worn).
• Conversations need to take place on more than one occasion (over days, weeks and even months) and should not generally be completed on a single visit.
• Conversations take time and effort and cannot be completed as a simple checklist exercise.
• Conversations should take place in comfortable, unhurried surroundings; time is a key factor.
• Conversations should be devoid of medical jargon, language should be positive, and trust must be built using empathic listening skills.
• A step-by-step approach to identifying and resolving issues should be used, coupled with “time out” periods where doctors withdraw from the encounter to allow the patient and family to discuss among themselves the care options being presented.
• Individuals should be given realistic information on prognosis and treatment options with emphasis on how their illness is expected to impact on their daily function.
• Conversations should avoid focusing initially on medical interventions (e.g. cardiopulmonary resuscitation, intubation) but rather determine values, goals and preferences (e.g. prolonging life and preserving mentation versus minimising suffering and avoiding undignified states or an unacceptable functional status).
• Look out for cues suggesting individuals are becoming uncomfortable talking about certain issues or may wish to end the conversation.
• Encourage patients to identify a surrogate decision-maker and to discuss their wishes with that individual; if desired, offer to facilitate a conversation between the patient and their surrogate or other family members; identify whether patients have specific desires for how information is shared among family members.
• Summarise and check the patient’s and, if present, their surrogate’s understanding of what has been discussed at the end of sessions.
• Encourage patients and surrogates to have conversations documented, but reassure them that these documents are not necessarily final or binding.
• Plan for a review as clinical circumstances change.

Copyright © 2009 Royal College of Physicians. Adapted with permission. Reproduced from: Royal College of Physicians, National Council for Palliative Care, British Society of Rehabilitation Medicine, British Geriatrics Society, Alzheimer’s Society, Royal College of Nursing, Royal College of Psychiatrists, Help the Aged, Royal College of General Practitioners. Advance Care Planning. Concise Guidance to Good Practice series, No 12. London: RCP, 2009.

What is an Advance Care Directive?

Advance care planning will often lead to the completion of an Advance Care Directive (ACD). An ACD is a means by which a competent adult can determine the medical treatment that he or she wants to accept or refuse in the future if decision-making competence is lost.⁴ An ACD is generally a written document intended to apply to future periods of impaired decision-making capacity, which provides a legal means for a competent adult to record preferences for future health and personal care and/or to appoint and instruct a substitute decision-maker (SDM).⁵ ACDs are not clinical care or treatment plans; but clinical care and treatment plans can and should be informed by ACDs.²

When is an ACD valid?

In general terms, an ACD is valid when it meets the following criteria:

• It is made by a competent adult.
• It is made free of undue influence.
• It applies to the situation at hand.

Use of ACDs

In recent years there has been a greater focus on the role of advance care planning and ACDs. This policy has been driven by a number of factors including Australia’s ageing population, medical and technological advances which prolong life, increased emphasis on autonomy and patient-centred care, and the provision of quality care at the end of life. However, to date, ACDs have not proved to be a popular planning tool. This is despite the fact that individuals are encouraged to discuss with their families how they would like their health care to be managed if they are no longer able to make their own decisions, and for doctors to incorporate advance care planning as part of routine health care, including raising the topic with all older patients.² Some of the concerns that have been raised in relation to the use of ACDs are:

• validity and reliability – the person making the ACD may lack the information required to make an informed choice, especially where the ACD is made prior to the onset of an illness for which a treatment decision must be made, and the way in which the ACD is written may be influenced by the manner in which questions are posed
• durability – an individual’s treatment choices can change over time such that an ACD made at a particular time may not accurately reflect the person’s wishes at a later date, and may not reflect advances in medical practice
• efficacy – the person’s true wishes may not be accurately ascertained from an ACD with sufficient clarity to guide clinical management
• accessibility – it may not be possible to locate an ACD when needed
• portability – each state and territory has a different legislative framework for ACDs.

As a result of these factors, medical practitioners may be concerned about following an ACD, especially where they do not believe it represents “good” medical decision-making, or that the ACD may not represent the true wishes of the patient. Practitioners may also be concerned about potential liability, especially where there is conflict with the wishes of the patient’s family.

Code of ethical practice for ACDs²

• ACDs are founded on respect for a person’s autonomy and are focused on the person.
• Competent adults are autonomous individuals and are entitled to make their own decisions about personal and health matters.
• Autonomy can be exercised in different ways according to the person’s culture, background, history or spiritual and religious beliefs.
• Adults are presumed competent.
• Directions in ACDs may reflect a broad concept of health.
• Directions in ACDs can relate to any future time.
• The person decides what constitutes quality of life.
• The substitute decision-maker (SDM) has the same authority as the person when competent.
• The SDM must honour residual decision-making capacity.
• The primary decision-making standard for SDMs is substituted judgement.
• A SDM should only base his or her decision on “best interests” when there is no evidence of the person’s preferences on which to base substituted judgement.
• An ACD can be relied upon if it appears valid.
• A refusal of health-related intervention in a valid ACD must be followed, if intended by the person to apply to the situation.
• A person, or their legally recognised SDM, can consent to the treatment offered, refuse the treatment offered, but cannot demand treatment.
• A valid ACD that expresses preferences or refusals relevant and specific to the situation at hand must be followed.

Legal framework for ACDs

The common law recognises, as part of the right to self-determination, that an individual can complete an ACD that will bind a health practitioner who is treating that person, even if the directive refuses life-sustaining treatment. A 2009 NSW Supreme Court judgment (see the article “ACDs and the Law” in this issue of Defence Update) confirmed that if an ACD is made by a capable adult, is clear and unambiguous, and extends to the situation at hand, it must be respected.⁷

In addition to the common law, legislation governing ACDs has been enacted in every state and territory, except NSW and Tasmania where the common law would apply with regard to ACDs. However, the legislation is complex and there is considerable variation in the scope of the legislation. Between jurisdictions, the legislative name of ACDs varies and there are differing restrictions that affect their operation (see Table 1).

Table 1

A more detailed summary of the legislation in each state and territory can be accessed at End of Life Law in Australia.

References

1. Good Medical Practice: A Code of Conduct for Doctors in Australia. Section 3.12 End-of-life care. Available at: medicalboard.gov.au
2. The Clinical, Technical and Ethical Principal Committee of the Australian Health Ministers Advisory Council. A National Framework for Advance Care Directives. Canberra: AHMAC, 2011.
3. RACGP. Position Statement: Advance Care Planning Should be Incorporated into Routine General Practice. Melbourne: RACGP, 2012.
4. Willmott L, White B, Matthews B. Law, autonomy and advance directives. Journal of Law and Medicine 2010;18:366.
5. A substitute decision-maker is a person who has legal authority to make decisions on behalf of another person who no longer has decision-making capacity.
6. Adapted from Advance Care Planning. Concise Guidance to Good Practice series. No. 12. London: Royal College of Physicians, 2009. In: Scott IA, Mitchell GK, et al. Difficult but necessary conversations – the case for advance care planning. Med J Aust 2013;199 (10):662-666. Available at mja.com.au/journal/2013/199/10/difficult-necessary-conversations-case-advance-care-planning. Copyright © 2013 The Medical Journal of Australia – reproduced with permission.
7. Hunter and New England Area Health Service v A [2009] NSWSC 761