Advance care planning is a process that involves planning for your future medical care in the event that you become too unwell to make decisions for yourself.
Dr Karen Detering from Advance Care Planning Australia says that advance care planning is an important way for people to not only think about what matters to them in regards to care, but to communicate this to the people that count.
“If we get to the situation when we can’t make our own decisions and we haven’t had a discussion it’s very, very hard for everyone involved to work out what the person themselves would’ve wanted. That’s obviously hard for the person themselves because they may or may not get the care they want, but also for families and health professionals because they don’t know how best to look after somebody,” says Dr Detering.
Dr Detering says that while advance health directives are what many people think of when they think of advance care planning, this is only one part of the process.
“One of the key things we encourage people to do is to think about who they would trust to make decisions on their behalf if they couldn’t make their own decisions. The first thing is to work out who that person will be – or people as it might be more than one – and appoint them as their health attorney and talk to them about the types of things that are important to you.
“Often in these situations, we’re not talking about the right decision but rather the best decision for the person. For example, if one person was getting older and becoming unwell they might be very okay with going into hospital and having lots of different treatments to try and have a bit more life, even if that means they were going to be significantly disabled and maybe needing more care. Whereas a different person might go ‘actually that doesn’t sit very well with my goals, my values and my needs’.
“As health professionals, we don’t know what people’s trade-offs are or their line in the sand unless they have actually talked about these things. Advanced care planning is not planning for your death, it’s planning for your life and how you want to be living now and into the future in the way that best meets your needs.”
Dr Detering also notes that it can be helpful to think in terms of preferred outcome, rather than treatments.
“It’s important to think about what outcomes you are hoping to achieve from the treatment or by refusing treatment. We shouldn’t be asking our population to become experts in treatment, rather they’re experts in themselves and what’s important to them.”
“I would caution people on being too specific unless they’re really sure because you cannot plan for every treatment eventuality.”
Once you’ve appointed a health decision maker and thought about your health preferences and goals, it’s then time to document your wishes.
In Queensland, there are two documents where you can document your health directives. The first is through a Statement of Choices form. While this document isn’t legally binding it can help you work through your broad wishes around your future care needs.
“The Statement of Choices form is a broad document based on goals, values and the narrative that sits behind the treatment decisions that people make,” says Dr Detering.
“What the Statement of Choices form is trying to do is get some of that thinking down and then get the decision from there. So, from that perspective, it’s a really good document.”
Then there is an Advance Health Directive form which is the best way to document specific treatment decisions.
“If an individual has a specific treatment decision, so say if they don’t want resuscitation or they don’t want dialysis or whatever is relevant to their condition this is best captured on the Advanced Health Directive form.
“The best way to do it is to document your preferences as clearly and as specifically as possible. So rather than saying something like ‘I don’t want to be a vegetable’ say something like ‘for me, being able to communicate with my family is important’.
“The documents themselves are important but if the thinking and the conversations haven’t occurred then the documentation isn’t likely to be very useful and may not actually influence care.”
Once you’ve completed your advance care planning documents, it’s important to share them with the people that will be involved in care decision making.
“If people fill in the documents, make sure they go to places where they can be found. For those in an aged care facility, it should go to the care facility and it should always go to your GP and appointed family members. It’s also important to note where the copies are for when you want to update the documents,” says Dr Detering.
According to Dr Detering, there are many benefits of having advance care plans in place when it comes to treatment.
“If someone has done advanced care planning and have documented it and made the information available they are likely to get care consistent with their preferences and that meets their needs.
“I also think one of the big selling points for advanced care planning is if we do this, it’s better for the families and the people making decisions so then they know they are making decisions that are consistent with their loved one’s wishes. It’s a win for everybody.
“From a doctor’s perspective, I love it when someone has a plan, because rather than thinking ‘oh gosh, what do they want?’ I can start thinking this is the information I have available and I can match what I’m trying to achieve with what they’re hoping to achieve. When people do advanced care planning they do get better care and also think the health and care staff do better as well.”
Dr Detering also adds that the plans can provide much-needed direction in times of stress.
“There is nothing worse than sitting with the family and trying to work out what to do when there really isn’t a right answer and with the family having no idea what to decide.”
“It’s stressful enough being at the hospital with a decision to make, but at least if you know you’ve got principles and a framework to work with because you’ve had the conversation it makes that process a lot easier. The health staff will then guide the decision making too when we have a plan because we can look at what’s written and we’re starting with knowledge. It’s very powerful.”
For free help with advanced care planning, call the Advanced Care Planning Advisory line on 1300 208 582 where you can get your advance care planning answered 9am – 5pm (AEST) Monday to Friday. There are also free resources available at the Advance Care Planning website.
For more information on the advance care documents used in Queensland, this comparison table is a handy resource.
Download relevant Queensland Advance Care Planning forms from the resource section.