Advance care planning

Advance care planning has many benefits for the person, their family, carers and for health professionals and organisations providing their care. Advance care planning:

• Allows people to take comfort in sharing their plan of what is important for their future health and personal care with others.
• Enables decision-making to occur by the person without the pressure of acute clinical decline.
• Assists people to make decisions when they are able to communicate so they receive care that is consistent with their beliefs, values, needs and preferences if they become unable to communicate decisions.
• Reduces non-beneficial transfers to acute care and unwanted interventions.
• Improves patient and family satisfaction with care, with families experiencing less anxiety, depression and stress.

A range of legislative requirements also inform obligations for advance care planning:

• Guardianship and Administration Act 1990
• Criminal Code
• Common Law
• National Quality Standards for health services, general practice and aged care
• Codes of conduct and professional guidelines.

Together these benefits and obligations justify the inclusion of advance care planning as part of routine care.

Health professionals across the multidisciplinary team need to be able to facilitate advance care planning conversations effectively. Many health professionals have the skills, confidence and expert knowledge to have in-depth advance care planning conversations whilst others may need additional training and support.

There are 4 main elements to advance care planning: Think, Talk, Write, Share.

Health professionals can support people as they move between these elements and change their choices to suit changes in their personal situation, health or lifestyle.

WA Health has developed a set of principles to promote a common understanding of advance care planning and consistency in how health professionals support the process in WA. Advance care planning:

1.  is voluntary, person-centred, and focused on empowering people to have choice and control over their future medical treatment decisions 
2.  is an ongoing process which the person can engage in at any point in time, and requires regular review allowing a person to make and change decisions as their circumstances and preferences change
3.  can be undertaken at any age and ideally commences before a person is unwell
   
   
4. is inclusive and can involve as many, or as few, people the person chooses to involve (e.g. family, carers, friends. health professionals, legal professionals)
5.  should be holistic and respect the whole person, with broad consideration of healthcare needs (i.e. not limited to medical treatments)
6.  should acknowledge and respect a person’s attitudes towards health and wellbeing, including cultural and spiritual considerations
7.  is focused on the person’s values, priorities and preferences and encompasses more than the completion of advance care planning documents
8.  may involve many, and sometimes challenging, reflections and discussions; these may need to be facilitated to ensure the person understands all their options when it comes to planning for their future care
9.  needs to follow an ethical process and support the person’s right to meaningfully participate in decision-making to the greatest extent possible.

Introduce advance care planning early as part of routine care, rather than as a result of health decline or crisis. Remember, advance care planning is voluntary and people should not feel pressured to participate in discussions or write advance care planning documents.

Preparing for advance care planning discussions

• Consider learning about advance care planning through relevant training and resources.
• Familiarise yourself with relevant information resources.
• Look for and take opportunities to talk to people about advance care planning.

Opportunities to raise advance care planning

Triggers for advance care planning conversations can include:

• when a person or family member asks about current or future treatment goals
• scheduled health assessments and vaccinations (e.g. as part of 75+ years health assessments, GP Management Plan and Team Care Arrangements, or during chronic disease management consultations)
• diagnosis of, or change in, a chronic or life-limiting illness or disease that could result in loss of capacity
• changes in care arrangements (e.g. admission to a residential aged care facility)
• applications for care assistance (e.g. Aged Care Assessment Team (ACAT) assessment or the National Disability Insurance Scheme (NDIS))
• if you would not be surprised if the person died within 12 months
• Goals of Care discussions.

Responding to interest in advance care planning

• Be open to engaging in advance care planning conversations.
• Acknowledge and validate the importance of the conversation.
• Provide reliable, easy to read information (e.g. Your Guide to Advance Care Planning in WA: A workbook (PDF 1.6MB)).
• Encourage people to talk with their family and friends about what is important to them.
• Acknowledge and respect the person’s own beliefs and values.
• Recognise the different needs (external site) of priority groups (e.g. people from culturally and linguistically diverse backgrounds, Aboriginal people, LGBTIQA+ people, people with disability).
• Recognise advance care planning as an ongoing, evolving process and plan time to continue the conversations.

Supporting advance care planning discussions

Normalising advance care planning conversations can help them become a consistent part of care, with advance care planning discussed in the context of goals for healthy living and positive mental health. Look for opportunities to link advance care planning in with other existing processes i.e. Goals of Patient Care. Remember to revisit advance care planning conversations regularly and review documents every 2 years or when there are changes to a person’s condition or health.

Use the Your Guide to Advance Care Planning in WA (PDF 1.6MB) to facilitate discussions. This consumer guide walks people through things to consider about their health, values, preferences and future care.

Before you begin the discussion

• Is the environment private and comfortable?
• Who should be present?
• Is relevant clinical information available?
• What are possible conversation starters?

During the discussion

The person may want to consider:

• current health or health problems, family history
• concerns, worries or fears about future health care
• reviewing any existing advance care planning documents.

When closing discussions

• Review and summarise the main points of discussion
• Ask the person for their understanding of the discussion
• Clarify inconsistencies or misunderstandings
• Offer take home information
• Arrange further meetings
• Encourage the individual to talk with others they trust and seek further advice (e.g. legal).

Health professionals can support people to document values, beliefs and preferences by:

• discussing the options of documents – noting which are statutory and which are not (see the advance care planning documentation flowchart for WA)
• providing advice and guidance about treatment decisions to consider and the potential outcome(s) of their choices
• encouraging the person to write down their decisions about medical treatment in their own words
• refer people to relevant organisations for assistance (see Where to get advice)
• encouraging a review of advance care planning document(s) every 2 years or when there are changes to a person’s condition or health.

When helping people decide which advance care planning documentation is right for them, it is useful to refer to the Hierarchy of treatment decision-makers (PDF 1.5MB). This explains the order in which health professionals must consult decision-makers when seeking a treatment decision for a person who lacks capacity.

Statutory documents

A statutory advance care planning document is the most formal way to record a person’s values, preferences and treatment decisions. Such documents are recognised under WA legislation and must:

• be made by an adult with capacity (adults are considered to have capacity unless proven otherwise)
• be made by the individual, not by someone else on their behalf
• meet formal witnessing and signing requirements.

Because of these requirements, statutory documents have the strongest legal force and generally must be followed. There are unique statutory documents for WA including:

Advance Health Directive (AHD)

An Advance Health Directive is a legal document completed by a competent adult and contains decisions regarding future medical treatment. It specifies the treatment(s) for which consent is provided, refused or withdrawn under specific circumstances and only comes into effect if it applies to treatment a person requires, and only if the person becomes incapable of making or communicating their decisions.

An Advance Health Directive includes a values and preferences section which includes the same questions as those in the Values and Preferences Form. By completing an Advance Health Directive, all the information can be included in one statutory document.

Health professionals should be familiar with the Guide to Making an Advance Health Directive in WA (PDF 15.MB) for instructions on how to complete an Adavance Health Directive.

Enduring Power of Guardianship (EPG)

An Enduring Power of Guardianship (external site) is a legal document in which a person nominates an enduring guardian to make personal, lifestyle and treatment decisions on their behalf in the event that they are unable to make reasonable judgements about these matters in the future. An EPG is different from an Enduring Power of Attorney (EPA), which relates to financial and property matters.

Non-statutory documents

Non-statutory documents are not recognised by WA legislation and do not carry the same legal force as a statutory document. Documents include:

Values and Preferences Form: Planning for my future care

A Values and Preferences Form (PDF 487KB) is a statement of a person’s values, preferences and wishes in relation to their future health and care. Wishes may not necessarily be health-related but will guide treating health professionals, enduring guardian(s), family members and carers in how a person wishes to be treated, including any special preferences, requests or messages. In some cases, this may be considered a valid Common Law Directive – although this is not the recommended format to make treatment decisions.

The questions in this form are the same as the ‘Values and preferences’ section of the Advance Health Directive. If people are not yet ready to complete a full Advance Health Directive with formal witnessing and signing requirements, they may like to start with a Values and Preferences Form.

Advance care plan for a person with insufficient decision-making capacity

An Advance care plan for a person with insufficient decision-making capacity (external site) is an advance care plan that can be completed by a person’s recognised decision-maker(s) (i.e. person highest on the Hierarchy of treatment decision-makers who is available and willing to make decisions) who has a close and continuing relationship with the person. This plan can be used to guide decision-makers and health professionals when making medical treatment decisions on behalf of the person, if the person does not have an Advance Health Directive or Values and Preferences Form. It should only be used when a person no longer has sufficient decision-making capacity to complete an Advance Health Directive or Values and Preference Form. This form cannot be used to give legal consent to, or refusal of treatment.

Clinical documents

Goals of Patient Care

Goals of Patient Care (GoPC) establishes the most medically appropriate, realistic, agreed goal of patient care that will apply in the event of clinical deterioration, during an episode of care. GoPC and advance care planning are separate but related processes. A GoPC form is available for use in WA. This document prompts and facilitates proactive shared decision-making between treating health professionals, the person and their families.

GoPC forms should align with the person's advance care planning documents and may include treatment decisions that were not considered when the person prepared their advance care planning documents. The content of any advance care planning document should be discussed during a GoPC discussion. The health professional should ask the person if they agree to upload a copy of their GoPC to My Health Record.

The GoPC form has been adapted for use in different settings of care e.g. the Paediatric GoPC and the Residential Goals of Care form.

Common Law Directives

In some cases, non-statutory documents may be recognised as a Common Law Directive. There can be significant difficulties in establishing that a particular Common Law Directive is valid at law and can be followed. For this reason they are not recommended for making treatment decisions. All documents, including non-statutory documents, are important in terms of having conversations with loved ones that may become decision-makers on behalf of that individual in the future.

Other documents related to advance care planning

Other topics that are not related to health or that cant be recorded in advance care planning documents may arise during discussions. Be aware of where to refer people for assistance if these topics are raised.

• Organ and tissue donation
  Encourage people to register via DonateLife (external site) as organ and tissue donation cannot be formally registered using advance care planning documents.
• Wills
  A will is a written, legal document that says what a person wants to do with their money and belongings when they die. Refer to the Public Trustee (external site).  
• Enduring Power of Attorney (EPA)
  An Enduring Power of Attorney is a legal agreement that enables a person to appoint a trusted person – or people – to make financial and property decisions on their behalf. Refer to the Office of the Public Advocate (external site).

Seeking clarity on the validity of documents

If you have concerns about the validity of an Advance Health Directive or Enduring Power of Guardianship, and the person has capacity, you should discuss your concerns with the person.

If the person does not have capacity, you should:

• follow your organisation’s internal processes for resolution of such concerns
• seek advice from your professional association
• consider making an application to the State Administrative Tribunal (SAT) (external site).

Storing and sharing advance care planning discussions and decision

It is best practice for health professionals to:

• record details of advance care planning discussions including those involved and details of topics discussed
• put written documentation (e.g. notes and copies of advance care planning documents) in:
  • the person’s file in a consistent and accessible section
  • clinical handover for transfer to another care setting
• encourage and help people to upload their advance care planning documents to their My Health Record (external site)
• recommend people keep original advance care planning documents in a safe place and share copies with as many of the following people they trust and feel comfortable with:
  • family, friends and carers
  • enduring guardian(s) (EPG)
  • enduring attorney(s) (EPA)
  • GP or local doctor
  • oother specialist(s) or health professionals involved in their care
  • residential aged care facility
  • local hospital
  • legal professional.
• advise people to keep a list of everyone who has a current copy of their advance care planning documents so they can be contacted if they revoke or update the document(s) in future.