Advance care planning is when people outline their future treatment and personal care requirements in the event they become unable to express their wishes. It’s not about dying - in fact, the conversation about advance care planning should begin well before patients reach end-of-life care, writes Karen Keast.


It’s the conversation many health professionals don’t know how to begin.

As a former critical care nurse and now project officer at Austin Health’s Advance Care Planning Department, Sharon Neyland says it’s a crucial conversation nurses and allied health professionals often need to have with their patients.

Ms Neyland says one simple way of broaching the subject is to liken advance care planning to car insurance.

“Most of us will have car insurance and we don’t plan on having a car accident but we have the insurance there just in case,” she says.

“You don’t plan on becoming so unwell that you can’t communicate but you’ve got this there just in case. It makes people think about if anything happened and that they couldn’t speak for themselves, who would speak on their behalf?

“It’s important for them to know that the benefit of having the Medical Enduring Power of Attorney (MEPOA) is that they can refuse treatment on their behalf when no-one else can.”

Victoria’s Austin Health is leading the way in advance care planning. The organisation runs the Advance Care Planning Australia website with the support of the Commonwealth Department of Health to provide a national platform for resources for health professionals and consumers on advance care planning.

The Advance Care Planning Department provides training, including a free online course plus a practical workshop, and hosts an annual Advance Care Planning and End of Life Care national conference each November.

The health provider is also striving to improve its own advance care planning processes with a major change management project across its three sites.

Advance care planning was first implemented at Austin Health in 2002. From 2009 until recently, its model supported specific advance care planning clinicians to facilitate discussions and complete advance care planning documents with patients.

While the model itself was a success, it only enabled a small number of patients to have access to advance care planning services and complete advance care plans.

A more sustainable model is now being rolled out, which supports all health care staff to have advance care planning conversations and to complete advance care plans.

Under the move, the role of the advance care planning clinician is being expanded to offer expert support, staff education, clinical championing and mentorship while assisting patients with more complex advance care planning conversations.

An advance care plan includes an advance care directive - a written document that records the person’s medical treatment wishes in the event they are unable to communicate for themselves due to injury or illness.

Another document, known as the MEPOA, appoints a substitute decision maker.

While there are differences between the state and territories, the MEPOA can consent to medical treatment or legally refuse treatments on the patient’s behalf.

Ms Neyland says advance care directives are living documents that can be reviewed and updated either annually, as the patient’s medical condition or social circumstances change or as they wish.

“Advance care planning has been shown to significantly improve many outcomes for patients and their families,” she says.

“It improves the quality of care, including their end-of-life care, and increases the likelihood that the patient will die in their preferred place.

“It’s associated with increased utilisation of hospice services and a reduction in hospitalisation and also the use of intensive treatments at the end-of-life.

“It also results in lower risk of stress, anxiety and depression in surviving relatives and it reduces moral distress amongst health care providers as well.”

Austin Health completes almost 500 advance care plans each year, seeing about 1200 inpatients a year.

Ms Neyland says about 10 per cent of patients have an advance care plan when admitted to hospital but up to 80 per cent of patients are likely to meet the criteria for the development of an advance care plan.

“There’s lots of different illnesses where people would benefit from an advance care plan - anyone who is elderly and frail, anyone who has any chronic conditions or people who have early cognitive impairment with dementia,” she says.

Ms Neyland says allied health professionals and nurses, especially those working in hospital admission risk programs, transitional care, hospital in the home, outpatients, pre-admission clinics, community health care centres, general practice and residential aged care facilities, have numerous opportunities to have advance care planning conversations with patients.

Those conversations should begin when people who have ongoing health problems are still well and living either in the community, a more sub-acute setting or in outpatients - not at end-of-life.

“It depends on the person but we always say the sooner we do an advance care plan, the better.

“It’s something that can be done nice and early while they are well and not stressed and sick, and then it gets reviewed as time goes by,” she says.

“Then, it’s less stressful and they’ve had time to think about it if it’s due for review, or they’ve been into hospital and their medical condition has changed.

“They might have a better understanding of what their hospital experiences have been like in that 12 months and had more time to think about what they want or don’t want.”

On all admissions, nurses should ask patients whether they have an advance care plan.

It’s also important nurses know how to have the conversation and fill out the advance care plan documents, be able to find the document and read it, know when to review it and share it, and understand when it needs activating.

“At the end of the day, it’s about the patient’s wishes,” Ms Neyland says.

“Health care professionals need to understand that it is patient-centred care and the patients have a right to advance care planning and it’s important that their wishes are respected.”


How Austin Health develops advance care plans:

1. Participation. All Austin Health patients have the opportunity to participate in advance care planning. Patients are introduced to advance care planning and asked if they would like to have further conversations on the topic.
2. Outlining treatment and care. Patients wanting to develop an advance care plan will often discuss their values, wishes and treatment goals with their Medical Enduring Power of Attorney (MEPOA) and their health professional.
3. Writing it down. The patient’s preferences are then documented on an advance care plan and stored in Austin Health’s scanned medical records. Alerts are added onto the clinical information system to ensure staff are aware that an advance care plan exists.
4. Sharing it. Ideally, the advance care plan is provided to the patient and their MEPOA, then shared with other family members and health services, such as the patient’s GP, ambulance service, residential aged care facility and community centre.
5. Ready when necessary. Advance care plans are regularly reviewed and are only activated in the event the patient is unable to communicate.

# Visit Advance Care Planning Australia and view Victoria’s Advance Care Planning Strategy for more information.