Advance Care Planning: What do I need to know?
Would you let someone else write your will, deciding what happens to your financial assets when you pass away? No way, you say.
And yet, three out of four people over 65 haven’t drawn up what is sometimes called a living will – an Advance Care Directive – to set out instructions about what happens to them should they lose the ability to make decisions about their health and wellbeing.
“It is a human right that we should be able to express what our future preferences are and ensure we plan for what treatment we may or may not want to receive.”
If you’re like most people and haven’t embraced advance care planning, it means someone else will be left to make critical decisions about your treatment and care if you can’t.
It’s a worrying situation Advance Care Planning Australia (ACPA) Program Director Linda Nolte is passionate about changing.
“Every day people are diagnosed with a chronic illness or a sudden medical event where they lose their capacity to express their preferences and yet important decisions about their treatment need to be made,” she says.
What is advance care planning?
ACPA describes advance care planning as having conversations about, and planning for, your future health and personal care so that you, your family, friends, carers and doctors know your values, beliefs and preferences.
Any person with capacity can make an advance care plan. Advance care planning is particularly important if you are older and frail, have a chronic illness, multiple diseases, an early cognitive impairment, or are approaching the end of your life.
Advance care planning involves:
- Appointing a substitute decision-maker
- Completing an Advance Care Directive.
An Advance Care Directive only goes into effect if you are unable to make decisions for yourself. If that time ever comes, your Advance Care Directive will guide your loved ones and doctors so that they can make decisions that are in harmony with your wishes.
What does an Advance Care Directive contain?
An Advance Care Directive is a very significant document that details your treatment preferences. It covers your:
- Consent for future treatment
- Refusal of treatment
- Request to withdraw some form of medical treatment.
You can include instructions about where and how you wish to die – at home or in a hospital – and if you would like to have your family or friends with you.
You can choose to include information about your values and beliefs, which will help guide any decisions made on your behalf.
What are the benefits of advance care planning?
There’s a lot of talk nowadays about person-centred care in the health and aged care sectors.
According to the Australian Commission on Safety and Quality in Health Care, person-centred care is “widely recognised as a foundation to safe, high-quality healthcare. It is care that is respectful of, and responsive to, the preferences, needs and values of the individual patient”.
Some benefits of advance care planning include:
- You’re more likely to get end-of-life care that suits your preferences. This might involve avoiding unwanted treatment and pain.
- There will be less pressure on your family because they’ll know what you want. This can minimise conflict between family members and ease their grief.
- The treating doctors and nurses will feel more confident they’ve delivered care that is aligned with your wishes.
Why do so few people have an Advance Care Directive in place?
There are many reasons and the first is a lack of awareness.
There hasn’t been a lot of investment in raising awareness of the issue nationally until the past few years. ACPA, which has been operating in its current form since 2016, is a national program funded by the Australian Government Department of Health.
As the peak body and national authority on advance care planning, ACPA is working hard to lift the number of Australians who have a directive in place. Each year it runs a national campaign and this year Advance Care Planning Week ran from 23 to 27 March. During the week ACPA has a particular focus on encouraging people to use the resources on its website to inspire conversations about what we value most in life.
According to Nolte, the second reason for the low take-up is cultural.
She notes that generally people are very comfortable with planning most aspects of their lives but not their end of life.
“People will plan their education, career, whether to get married, where they might live, whether to have a family, which school to send their children to and the holidays the want to have. But for some reason people don’t want to talk about end of life,” she says.
Nevertheless, advance care planning is the only way to ensure choice and control over what happens to you at the end of your life.
Advance care planning in aged care
In 2018, ACPA audited 2389 health records of residents living in 58 residential aged care centres and found 68% of residents over 65 had some form of advance care directive in place.
However, of those nearly half were invalid.
This was mainly because the directive had been completed by someone else, often a family member.
“The concerning thing here is that advance care planning is meant to be undertaken by a competent adult, not a family member,” Nolte explains.
Of even greater concern is that of those directives signed by someone else, more than two-thirds had life-limiting instructions in place.
“No-one else should be writing instructions about not wanting CPR or not wanting any treatment and then signing that document. Such documents are not legally valid.”
Nolte says in some instances family members are being asked to complete directives on behalf of a resident, but she stresses that it is not appropriate to do so.
“An Advance Care Directive is only legal when completed and signed by the person with decision-making capacity.”
ACPA is working with aged care providers to help their staff better understand advance care planning but acknowledges it is not the responsibility of the sector to initiate and coordinate the process. “The role of aged care staff is to receive the directive, ensure it goes on the record and then to provide care that aligns with the directive,” Nolte says.
She says the advance care planning should be done well before someone enters into aged care, so that in the face of declining health they have a sense of certainty, choice and control