In the end, we all have to go.
But it can seem at times that people would rather die than talk about death.
It’s hard to draw any other conclusion when statistics show that 75% of us have not had end of life discussions, despite 60% of people thinking we don’t talk about death enough. This hesitancy has real life consequences. Studies show that around half of all Australians don’t have a valid will, meaning they have no control over how their assets will be distributed after they die.
Rules have just changed in Victoria meaning in most cases a person’s domestic partner will receive their entire estate if they die without a will. While this could make the process clearer and easier for partners, there’s no guarantee that it will reflect the wishes of the person who has died.
The financial implications of not planning for death are relatively clear, even if many people still do not act to prevent them. But avoiding end of life planning can also have serious health consequences. And unlike the problems caused by not having a legally binding will, the person will still be around to endure them.
As most health practitioners would know, when a person loses the capacity to participate in decision making discussions around their own health care those decisions must be made by their loved ones and the people treating them. North Western Melbourne Primary Health Networks CEO Adj/Associate Professor Christopher Carter said that in many cases this meant making decisions without knowing what the person receiving care would want.
“This can add a huge amount of stress to what is often already a very difficult time,” A/Prof Carter said. “Loved ones may struggle to make decisions for fear of making the wrong choice, or they may make decisions based on their own preferences and beliefs, which may be different to the person receiving care.
“This can also create conflict with other loved ones who have a different opinion, and make it difficult for health professionals to provide the best care in a timely way.”
Advance care planning can help avoid this situation, by letting a person’s loved ones and doctors know their medical decisions and treat them accordingly when they are no longer able to voice these decisions. Just as a will is a clear means to provide financial clarity after death, advance care planning is a crucial way to minimise confusion and conflict around health choices while a person is still alive.
From 12 March 2018 a particular type of written advance care plan known as an advance care directive (ACD) will become legally binding in Victoria. Under the new legislation, ACDs will allow a person to:
››Make an instructional directive (which will provide specific directives about treatment a person consents to or refuses).
››Make a values directive, which will describe a person’s views and values. A medical treatment decision maker (MTDM) and health practitioners will be required to give effect to a values directive.
›› Appoint a medical treatment decision maker (who will make decisions on behalf of a person when they no longer have decision making capacity).
›› Appoint a support person (who will assist a person to make decisions for themselves, by collecting and interpreting information or assisting the person to communicate their decisions).
›› In the event of a patient not having decision making capacity medical practitioners will be obliged to make reasonable efforts to locate an ACD and the patients’ MTDM
The new laws aim to reduce confusion around end of life care, with clear obligations for health practitioners and any nominated MTDMs caring for people who do not have decision making capacity. However while advance care planning has clear benefits and will soon be backed by legislation, very few people are doing it. Less than 10% of people currently have an ACD in place before they die.
As the Advance Care Planning Manager at the Royal Melbourne Hospital, Jo- Anne Slee’s role is to promote the use of advance care planning in the hospital context. She says people have different motivations for planning for their future care, which need to be taken into account when trying to improve uptake.
“For some people it is about ‘autonomy’ – a continuation of them making their own decisions once the capacity to do that has been lost,” Ms Slee said. “For many others it is about ‘relieving burden’ on family and loved ones – making it easier for them to know and understand the person’s wishes.
“I have definitely had people express immense relief to have discussed and documented their values, beliefs and preferences – something less for everyone to have to worry about in a time of crisis.”
Ms Slee said there is support available for people who want to make an advance care plan, and for practitioners who want to help more of their patients go through the process.
“There are lots of resources available to help people reflect on what’s important to them, discuss their values and preferences with loved ones and document these in some way.”
A/Prof Carter said health practitioners have a key role to play in getting more people to think about their future health needs.
“Health practitioners are constantly having conversations with people about how their health is now, and how it has been in the past. Turning some of those conversations to the future is a simple step that could have a powerful impact.
“It’s a win-win for practitioners – they get the clarity they need to provide the most appropriate care, and the person gets peace of mind that their wishes and values will be respected.”
Starting these conversations doesn’t have to be hard—it can be as simple as asking who they would appoint to make decisions for them when they are unable to do so. And the earlier and more often we do that the greater chance everyone has of living, and dying, on their own terms as much as possible.
In the end, isn’t that what we all deserve?
For more information on advance care planning, please contact Margo Roest on 03 9347 1188 or margo.roest@nwmphn.org.au
