Steps to establish an advance care plan with patients at the general practice:
- Initiate advance care planning.
- Discuss and document advance care plan.
- Store and share advance care plan documents with the patient, medical decision-maker and relevant care providers.
Steps to establish an advance care plan with patients living in an RACF:
- Initiate advance care planning on admission, and review annually or with major changes in health.
- Discuss advance care planning with the RACF staff (usually the registered nurse or nurse unit manager), resident and family (and other medical specialists, if appropriate).
- Assess and document patient decision-making capacity to appoint a medical decision-maker, and to make an advance care plan.
- Document and witness appointment of the medical decision-maker, patient values (often done with RACF staff), instructional directive (usually done with the GP).
- Store the advance care plan documents at the RACF and general practice, and share with the patient, medical decision-maker and relevant care providers (eg ambulance, locum doctor, emergency department).
Initiate advance care planning
While advance care planning could be considered for every patient, initiating discussion is particularly salient for an older person at health assessment, diagnosis of a life-limiting condition, care planning, after admission to an RACF or hospital, or key event with deterioration of health.
Advance care planning discussions are often ongoing at various consultations across the patient’s illness trajectory with the GP and/or practice nurse. It may be helpful to identify the person’s preparedness to consider advance care planning (eg using the Prochaska and DiClemente stages of change).6 Patients may initially be in ‘precontemplation’ stage, where giving limited information is the appropriate GP response, and they may later move into ‘contemplation’ or ‘action’ phase.
Identifying suitable patients
Identify suitable patients when well in the community or when triggered by a change in health. Consider an advance care plan if a person:7
- raises advance care planning with a member of the general practice team
- attends a health assessment – aged ≥75 years, or ≥55 years if they are of Aboriginal and/or Torres Strait Islander descent
- is a resident of or is about to enter an RACF
- requires a carer
- does not have anyone (eg family, caregiver or friend) who could act as substitute decision maker
- may anticipate decision-making conflict about their future healthcare – for example, people with uncommon treatment preferences (eg prohibit blood transfusion) or where there is disagreement among family members
- is at risk of losing decision-making capacity (eg early dementia at whatever age)
- is at care planning for progressive chronic disease/s
- has a life-threatening or advanced chronic disease (eg chronic obstructive pulmonary disease [COPD], heart failure)
- has a terminal or life-limiting illness (eg dementia, metastatic cancer)
- has a new significant diagnosis (eg frailty, transient ischemic attack)
- is at a key point in their illness trajectory (eg recent or repeated hospitalisation, commenced on home oxygen, moving into a palliative care phase).
Whatever the cause, consider an advance care plan if you would not be surprised if the person were to die in the next 12 months.
To initiate discussion, the practice nurse may:
- introduce advance care planning at a health assessment or care planning consultation
- provide information pamphlets and blank advance care plan documents (subject to state and territory requirements) to discuss with the substitute decision maker and/or family
- arrange follow-up appointment/s for patients with the nurse and/or GP to discuss and complete the documents.
RACF staff may initiate advance care planning with a resident and their family on admission to the RACF, after a hospital attendance or a change in health status, and arrange a consultation with the GP to discuss and witness documents.
Often, the practice nurse or RACF staff will discuss and help patients document the ‘values’ aspect of the advance care plan. The GP can then discuss medical conditions and treatment options for the instructional advance directive, answer questions and witness the completed documents.
The GP may raise the issue in a patient consultation at the time of review, a new diagnosis or change in health conditions. Advance care planning discussion and follow-up consultations can then be provided by the nurse or GP.
Discuss and document advance care plan
Discuss advance care planning with the patient, family, carer and other healthcare practitioners as appropriate (refer to Part B. Families and carers). It is important for GPs and practice nurses to think about how to approach this topic with patients so as to sound relaxed and helpful. The Advance Project website has some videos with appropriate wording, which can assist GPs and practice nurses to develop their communication skills for advance care planning.
There is a line to be drawn in wording between a suggestion that the person’s death is imminent (if it is not) and the need to consider plans for possible future care scenarios. For example, ‘I ask all my patients over 70 to consider making an advance care plan in case of severe illness so we know who to contact and what your wishes may be if you unexpectedly become seriously ill’.
Discuss the person’s broad values, beliefs and life goals. Some people may be able to articulate quite clearly that they value quality of life over length of life; however, others find it hard to think in this way. Discussion of scenarios may elucidate the person’s values and relationships and be very helpful for clinical decision making that delivers the outcome the patient wants. For instance, ask what the person considers is compatible with a reasonable quality of life versus what they see as a fate worse than death.
A discussion of some possible future clinical scenarios may help to elucidate care goals and treatment preferences for an instructional advance directive. For example, the person may not want to be resuscitated following a medical event if they already have a terminal illness (eg early dementia), which will inevitably lead to a decline and then death. If death is imminent, they may wish to die at home, or they may wish not to be a burden on their family and die in a place where care can be provided for the end-of-life and/or terminal phase.
Assess and document patient decision-making capacity if it is in doubt. A person is assumed to have decision-making capacity unless there is evidence to indicate otherwise. Competence or lack thereof can fluctuate over time and for different levels of decision making, and is specific to the issues, actions or decisions at hand (eg appointment of a medical decision maker).
Assessment of capacity should take place as close as possible to the time the decision is required. People should always be involved in decisions that concern them to the maximum extent possible. Appointment of substitute medical decision makers can assist with interpreting the person’s wishes if they are not able to express these.
Document and witness the advance care plan or advance care directive according to requirements and forms in the relevant state or territory for:
- appointment of a medical decision maker (medical power of attorney)
- advance care plan values statement and/or instructional advance care directive.
Resources and information are available for competent adults and those with impaired decision-making capacity to undertake advance care planning. Forms and requirements for each state and territory can be found at Advance Care Planning Australia.8 Although not strictly a health issue, it may be worthwhile to encourage patients to also write a will and appoint a financial power of attorney.
Store and share advance care plan documents
Copies of completed advance care planning documents should be held by the patient, substitute decision maker, family and GP for communication and implementation as needed to all others providing patient care. A person who has decision-making capacity can review and change their advance care plan at any time. If a change is made, then a copy must be given to all relevant people.
The documented advance care plan, advance care directive and substitute decision maker should be stored and prominently flagged in the GP’s patient record and at the RACF so these are easily accessible. The GP or nurse could also encourage the patient to upload the documents into My Health Record and perhaps give a copy to their lawyer.
Share advance care plan documents to ensure these are available at the location of care when it is required for clinical decision making and care planning, that is, when health conditions change and the patient may lack decision-making capacity:
- Share a copy of the advance care plan with the patient, medical decision makers and family.
- Encourage the patient to upload their advance care plan to My Health Record and keep a copy accessible at home to inform ambulance staff, locum doctor and visiting medical practitioners.
- Provide a copy of the advance care plan to the resident’s RACF and after-hours GP locum service
- Attach the patient’s advance care plan to referral letters (with medication list) to other medical practitioners, emergency departments, hospitals, and other healthcare services (especially where shared care arrangements; eg hospital outreach services, community, palliative and hospice care).
- For patients at risk of life-threatening events, an emergency information pack could be prepared, with a care plan, current medication list and advance care plan, which could be sent to the ambulance service and local hospital.