“I wouldn’t want to be kept alive like that” — but have you actually written it down?

Dr Kathryn Fox on why an Advance Care Plan could be the most important document you never make

After writing about what resuscitation really involves, many people reached out with the same question. What should I do if I don’t want certain treatments?

It’s a good question. And one that doctors are well placed to help answer.

GPs don’t just talk about conditions and treatments. They see what happens over time: the patient who survives a cardiac arrest – and what recovery looks like weeks or months later. They get to see firsthand how a stroke can impact someone’s daily life and independence, making them realizse the importance of health and social care in helping people recover and regain their independence.

Doctors also see families struggle to make tough decisions without clear direction, often during very stressful and emotional times. They might not all agree on what their loved one would want, which can cause conflict. And then there’s the guilt that can come later, whether they feel they didn’t do enough or did too much if things didn’t turn out as hoped.

Having a unique perspective really makes a difference because understanding a treatment isn’t just about knowing the medical facts, it’s about knowing what it’s like to live with the outcome of that treatment. That’s why conversations about future care often start with a GP who can help patients understand what to expect and how it will affect their daily life.

It’s not just about the medical side of things, but about how it will impact a patient’s life. GPs can help translate medical possibilities into real-life outcomes. That means explaining, in practical terms, what resuscitation involves, what intensive care might look like, and what recovery may realistically mean – including where uncertain outcomes lie.

It also shifts the focus from treatments to thinking about what’s really important to you as a person. Not just what medicine can do – but what you would want it to do. Discussing what’s important to you if you’re in a situation where you’re unable to speak for yourself doesn’t have to be overwhelming.

It can start with a simple talk with someone you trust, like a partner, child, or close friend. You don’t need to have all the answers figured out, just a sense of what matters most to you.

For instance, if something serious happened, would you want your quality of life to be the top priority, or would you want to be kept alive no matter what? Are there any religious or cultural beliefs that you’d want to be respected? Are there certain treatments you’d be open to, and others you’d rather avoid? The key is to have some idea of what you want, even if you don’t have all the details worked out.

To ensure your wishes are respected, establish a medical care plan while you can speak for yourself.

This is where an Advance Care Plan comes in – it’s a document that outlines your wishes for medical treatment. According to the RACGP, “Advance care planning is about person-centred care and is based on fundamental principles of self-determination, dignity and the avoidance of suffering.”

Sadly, not many people in Australia have taken the time to create one, with estimates suggesting that less than one in five people have documented their wishes.

This can lead to difficult decisions being made during a crisis, often by family members or doctors who are trying to do what’s best but don’t have all the information.

Many of us have probably said something like, “I wouldn’t want to be kept alive like that,” but without a plan, it’s not clear what we really want. Unless you’ve talked about and written down your wishes, doctors will usually try to save your life and keep you alive as long as possible. This is especially true if an ambulance is called or you’re taken to the hospital. In these situations, the default is to give you treatment and try to prolong your life, even if that’s not what you would have wanted.

That’s where planning makes a difference. You don’t need to plan every possible scenario. But it helps to be clearer about what matters most to you.

Before You Complete an Advance Care Directive, Ask Yourself:

• What matters most to me in terms of quality of life?

• What outcomes would I find unacceptable?

• Would I want treatment if recovery is unlikely?

• How do I feel about resuscitation?

• How do I feel about being kept alive on machines?

• Who do I trust to make decisions for me if I can’t?

• Have I actually told anyone what I want?

These questions can help guide the decisions you make and help inform those who one day may have to act on your behalf.

To learn more, visit Advance Care Planning Australia and Primary Health Network

They have easy-to-understand guides to help you get started.

Medicine can offer options. However, it can’t decide what matters to you. That’s where the conversation needs to begin.

Dr Kathryn Fox is an Australian medical doctor and bestselling crime writer, best known for her forensic thrillers featuring pathologist Dr Anya Crichton. Drawing on her medical expertise, she crafts gripping, authentic crime fiction and is also a passionate advocate for forensic medicine education and public engagement.