What does end of life look like for you? Have you thought about the type of medical treatment you want or do NOT want if you are diagnosed with a chronic disease or experience an acute, life-threatening medical episode such as a stroke.

More importantly, have you put these thoughts into writing and had a conversation with your loved ones about your wishes?

It turns out only 14% of people aged 65+ have completed an Advance Care Directive, meaning the vast majority of Australians have no say in the care and treatment they receive as they approach the end of their days.

“More women than men have documented their end-of-life wishes, while the use of Advance Care Directives is slightly higher in rural and regional Australia than it is in our metropolitan areas.”

 

University of New South Wales School of Psychology Postdoctoral Fellow Craig Sinclair advises all of us to have regular, ongoing conversations about our wants in the context of serious illness. He says we should identify who will be responsible for these decisions if we are incapacitated and make sure these people are clear about our preferences.

“If health professionals do not know what a person would want in the case of sudden illness or deterioration in an expected condition, it is hard for them to provide quality care,” Dr Sinclair says. “When these decisions are being made in the context of a crisis and without any prior discussion, they can be traumatic for family members.

“This distress and pain take the focus away from providing the best possible care for the person when they need it most.”

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When should I write an Advance Care Directive?

Too many people wait until a crisis happens or they are at the end-stage of chronic illnesses to think about advance care planning and writing an Advance Care Directive. The problem with waiting is that many people may have lost the ability to clearly communicate their wishes by this stage and have lost ‘decision-making capacity’.

Decision-making capacity is the ability of a person to understand the benefits or risks of, and the alternatives to, a proposed treatment or intervention, including no treatment.

Early conversations are crucial. Anyone over the age of 18 years, with decision-making capacity, can complete an Advance Care Directive.

Advance care planning is not just about end-of-life decision making. It’s important, normal, life decision making for all adults in the community.

For a younger, healthier person, the focus is more likely to be ‘who do I want to make decisions for me’, particularly in the context of a sudden illness or emergency. This person is known as a substitute decision maker and ideally, they are fully aware of your wishes.

For a person with an existing illness, seeking information from health care professionals about the likely course of the illness is often a good start when it comes to discussions about advance care planning.

 

 

 

 

If you’re thinking of doing advance care planning with your parents, you should also think of doing it for yourself.

For ageing adults, it’s crucial to think about, discuss, and prepare an Advance Care Directive while still living independently at home, either with or without assistance, and well before any crisis that could lead to a hospital or nursing home admission.

A crucial next step that is often overlooked at any age is to convert these discussions into formal documentation that can be stored with aged care providers such as Home Instead, general practice clinics, and hospitals.

It is also a great idea to make copies for family members and friends, and to keep a record of where the documents are stored.

People who expect they might need to use their Advance Care Directive in the near future may keep a note in their wallets, wear a wrist bracelet indicating its location, or keep it in a prominent location in their homes.

A study conducted by Advance Care Planning Australia found only half of the people who thought they had the right documentation actually did.

“An important part of healthy ageing is making informed health care choices. We want to empower everyone to take active control of their future care and ensure preferences are known and respected,” Advance Care Planning Australia Program Director Linda Nolte says.

“An Advanced Care Directive means you’re more likely to get the care you want and avoid the treatment you don’t want. It also relieves loved ones of the burden and potential sense of guilt trying to make life-and-death decisions by guess work.”

Key facts about advance care planning

  • Around 30% of people will not be able to make their own end-of-life medical decisions
  • Only 14% of Australians aged 65+ have documented their preferences in an Advance Care Directive
  • A third of Australians will die before the age of 75
  • Most people die after a chronic illness, not a sudden event
  • Research shows advance care planning can reduce anxiety, depression and stress experienced by families and that they’re more likely to be satisfied with their loved one’s care
  • Being in residential aged care was the biggest predictor for having some type of documentation, which was found for 38% of residents
  • For people with dementia, a third had completed a legally binding Advance Care Directive and a third had advance care plans completed by someone else. Note: these are not legally binding and are used as a guide for care only.

Share your health care preferences

National Advance Care Planning Week is the perfect time to have a heart to heart with someone close to you about your wishes and to document those values and preferences.

Ask your GP to sign your Advance Care Directive, upload it and store it in My Health Record and share copies with your substitute decision maker, family, friends, Home Instead care team, and your doctors.

“This will ensure everyone is aware of your choices, and your directive will be followed by all health and aged care professionals,” Home Instead Chief Operating Officer Georgia Downes says.

“Given our model of relationship-based care, our CAREGivers are invested in ensuring our clients’ wishes are always met. Being able to provide a copy of a client’s Advanced Care Directive to a treating team of doctors or paramedics gives them confidence that they are achieving this.”

Home Instead has a free resource ‘Dying At Home’ available to help with conversations around advance care planning. The National Advance Care Planning Support Service can be contacted on 1300 208 582 for free, personalised advice.

The Australian Digital Health Agency also has a set of national guidelines designed to assist health care providers to  support patients who want to add advance care planning documents to their My Health Record.

About Home Instead Australia

Home Instead is a specialist, national provider of high quality, relationship-based, in-home care for older Australians. We help with a range of personal and lifestyle needs while providing welcome companionship. Our services include assistance with personal care, light household duties, meal preparation, medication reminders, and transport to appointments, shopping and social outings. We take personal responsibility for providing the best in-home care and support to meet our clients’ needs and are committed to addressing the individual and national challenges of Australia’s ageing population.