End-of-life decision making: how a choice can make all the difference

Did you know that more than half of us will be unable to make our own medical decisions at the end of our lives?¹

Despite this scary statistic, too few of us take the time to discuss our medical treatment preferences in our final days, potentially leaving us without a voice. An advance care directive gives you the ability to make your medical treatment preferences known in situations where you’re unable to communicate or make decisions.

Research led by Advance Care Planning Australia and Palliative Care Australia found that 8 out of 10 Australians say it’s important to talk to family about end-of-life wishes,² but only 14 per cent of older Australians have formalised these wishes in an advance care directive.³ Unknown preferences could lead to doctors providing unwanted treatments and families feeling burdened with making decisions for a loved one without knowing their wishes, or worried that they might make the wrong choice.

So, we need to ask ourselves the hard questions like, “Who would I want to make my decisions if I was unable to do so? And what would I want them to say?” Advance care planning offers all of us the opportunity to share our healthcare preferences in advance.

The following stories about Mavis and her family are based on real-life scenarios and demonstrate how a simple discussion can make all the difference.

Mavis’ story

After Mavis’ husband Bob died a few years ago, Mavis lived alone with her beloved old dog Molly. While she was mostly independent, Mavis had experienced some falls recently, her ankles had started swelling and she realised she was getting a little forgetful. Realising her health was declining, she told her daughter Jill, who visited her every week, that she didn’t like the hospital. She explained that if she MUST go, she wanted to be able to return home to care for Molly and live independently.

One week Jill headed off on a holiday with her family, and Mavis’ son, Steve, visited her for the week. Unfortunately, during that week, Mavis had a fall in the garden and Steve couldn’t get her up. Although she was conscious, Mavis wasn’t making any sense with her speech, so Steve called an ambulance and contacted Jill to meet him urgently at the hospital.

 “I wish we all knew what Mum wanted.”

When Mavis was brought into the emergency department, Steve told the doctor, Dr Mills, what happened.

Dr Mills wanted to provide the very best care for Mavis, however was unable to find an advance care directive on her records, so he asked Steve if he knew what was important to Mavis and what care she would or would not like to receive. Steve admitted he didn’t know much about her health conditions or preferences, explaining that his sister Jill was her main support person and “knew all that stuff”.

Six hours later, Mavis stopped breathing and Dr Mills approached Mavis to begin CPR. He asked again if Steve knew his Mum’s wishes. Steve was frantic, “I wish we could get on to Jill”, he repeated in his thoughts, “And I wish we all knew what Mum wanted”.

When Jill finally arrived, Dr Mills explained that Mavis had been moved to intensive care with a tube helping her to breathe. “Will she survive?”, she asked Dr Mills, dreading the answer. Dr Mills explained that Mavis had fallen because of a stroke which resulted in speech loss and weakness on one side of her body. Then Mavis’ heart stopped and, because Dr Mills was unsure what Mavis wanted and Mavis seemed relatively well before the event, he had performed CPR. This resulted in some broken ribs, which often happens in a woman of Mavis’ age.

Now Mavis needed a breathing tube and had been given pain relief and sedation so she didn’t fight the tube. Jill was devastated because she knew this was not what her Mum wanted, and her Mum looked so fragile in her intensive care bed. Jill knew Mavis would want to be home with her family and Molly around her.

How could Mavis’ final moments been different?

After Mavis’ last fall, she had confided in one of the nurses that she had been thinking about what would happen if she had another fall and her increasing reliance on help at home. The nurse suggested she talk with all her children about her preferences for care and then write these preferences down in a document called an advance care directive.

Jill was there as Mavis explained, “I’ve lived a good life but I’ve been lonely since Bob died and I’m getting tired. I definitely wouldn’t want to be kept alive on machines. So if it came to that, just keep my pain well managed, hold my hand and let me go peacefully.”

Jill tried to dismiss it, telling her Mum not to worry about that now, but the nurse encouraged Mavis to talk to her other children and doctor to enable her future care to align with her wishes.

Mavis spoke to all her children that night about her completed advance care directive, hoping it would never be needed, but just in case of emergencies.

Jill cried, Steve said it was good they talked about this and their younger sister, Sue, was initially quiet but then smiled when she read her Mum had written, ‘Make sure I have my silk pillow and Molly on my bed’. The nurse took copies of the document and uploaded it to the hospital medical record, advising Mavis to give a copy to each of her children, specialists and her GP, and asked Jill to assist with uploading the directive to her My Health Record.

Mavis’ wish for a more peaceful passing

So when Dr Mills met Steve after Mavis suffered a stroke in the garden, he said he’d read Mavis’ advance care directive and noted that Mavis did not want any CPR or other treatment that would extend her life. He asked who Molly was and acknowledged Steve had packed his Mum’s silk pillowcase. He suggested Steve call his sisters so they could all be with Mavis, given there was a high possibility Mavis would deteriorate further.

They moved Mavis to a hospice adjacent to the hospital which felt much more homely than the emergency department. When Jill arrived, she saw that Sue had picked up Molly who was sleeping beside Mavis. The staff assured Mavis’ family that she was not in any pain and encouraged them to talk to Mavis and tell her how much they loved her. Hours later, Mavis stopped breathing, with her children and grandchildren around her, Molly beside her on her silk pillow and her favourite Garth Brooks song playing in the background.

What matters most to each of us?

Advance Care Planning Australia Program Director, Xanthe Sansome, explains that “losing someone we love dearly is incredibly sad”.

“We wish we could stop them dying, but unfortunately, we can’t,” Mrs Sansome said.

“Being able to honour their preferences for medical treatments, care or comfort is a deep privilege and makes the experience of dying uniquely personal for our loved ones.

“It encourages me to talk more to those I love so they are not left having to make a difficult decision in the dark during one of the worst moments in their lives.”

During National Advance Care Planning Week from 20 – 26 March, let’s talk about what matters most to us and how we want to live until our last breath. Talk to family and doctors, appoint a substitute decision-maker, and write down our preferences in an advance care directive.

Ask your GP to sign it and upload it to My Health Record for easy access, or you can upload it yourself. Give copies to your chosen substitute decision-maker, family, friends, carers and your local hospital and healthcare providers.

Advance Care Planning Australia ^TM is funded by the Australian Government and administered by Austin Health.

[1] Maria J. Silveira, M.D., M.P.H., Scott et al, Advance Directives and Outcomes of Surrogate Decision Making Before Death, The New England Journal of Medicine, 2010; 362:1211-1218. Available at https://www.nejm.org/doi/full/10.1056/NEJMsa0907901

[2] https://palliativecare.org.au/campaign/national-palliative-care-community-survey-2022/

[3] White, B., Willmott, L. et al, Prevalence of advance care directives in the community: A telephone survey of three Australian States. Internal Medicine Journal, 49(10), pp. 1261-1267. Available at https://eprints.qut.edu.au/126743/2/126743.pdf

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.