You only die once: How to do it your way with advance care planning

Do you want your life to end in a place of your choosing, surrounded by family, friends and even your beloved pets, any pain or symptoms you may suffer carefully managed with medication, with the peace of mind that comes from knowing your affairs are in order and you’ve spared your loved ones as much stress from your death as you can?

Or would you rather your final weeks, days and hours be spent in an anonymous hospital bed, unsure of the treatment you are receiving and unable to influence it either way, your quality of life gone, while your family tries to make decisions on your behalf without really knowing what you’d have wanted?

It’s no surprise that most Australians say they’d much prefer the former – what we’d call a ‘good death’. But the majority don’t actually end up having a good death; 86 per cent of Australians die in a hospital or nursing home, often enduring what the Grattan Institute describes in its Dying Well report as “impersonal, lingering and lonely deaths”.

And the sad reality is that many of us are consigning ourselves to such a death, simply by failing to make our end-of-life wishes clear to both our family and to healthcare professionals.

“We’ve got a cultural fear of death in Australia,” Lana Glogowski, the chief executive of Palliative Care Western Australia, says. “Because we don’t talk about death as part of life as some other cultures do, some people find it really confronting to talk about when they get older. Plus, people are busy, looking after grandkids and travelling, so discussing their end-of-life wishes just isn’t top of their list.”

Overcoming those barriers and clearly communicating your end-of-life desires is the only real way of increasing your chances of a good death, or at least the best death possible. And there’s a relatively simple way to handle this communication, both with people close to you and with professionals you may encounter. It’s called advance care planning

Advance care planning plays a vital role in ensuring you retain your autonomy and dignity, and maintain the highest possible quality of life, even as your death nears – yet, just 15 per cent of Australians currently have a plan in place (and only 7.5 per cent of Western Australians, who have the lowest uptake of advance care planning in the country).

What is advance care planning?

An advance care plan, however, focuses on the personal details of how you want to spend your last weeks, days and hours and what you’d like to happen immediately after your death – information that’s unlikely to be included on an EPOA or AHD. It only comes into effect when you’re no longer able to communicate your wishes and although it’s not legally binding like an EPOA and AHD, your loved ones and carers can use it to ensure they’re making decisions that are in accordance with your wishes.

“A will is about what happens after you die, and you may not want to complete an advance health directive until you’ve been diagnosed with a life-limiting illness and have had a conversation with your treatment team about what specific healthcare options may be available to you,” Palliative Care WA’s Glogowski explains. “But an advance care plan allows your individual values and wishes around the end of your life to be recognised.”

It’s important to note that many people obtain legal advice before nominating an EPOA because the document can have serious financial implications, and it’s common to speak to relevant medical specialists about your specific treatment options before completing an AHD, you can create an advance care plan without expert assistance – although plenty is available from Palliative Care WA’s helpful, new youonlinedieonce.com.au site and its free community workshops on advance care planning if you need it.

What should I include in my advance care plan?

Your advance care plan can contain anything you want to be considered as your death nears, so it is a very personal document. You’ll likely want to include the obvious considerations, such as:

• Whether you have nominated an EPOA or guardian, completed an AHD or written a will, and where these documents are located
• What you consider to be ‘qualify of life’, for example, the abilities or functions that you consider essential to you being considered to have a good quality of life
• Whether you’d prefer to die at home, in hospital or elsewhere, such as a hospice
• Whether you’d like to receive palliative care, at what stage of your illness you’d like it to start and what type of care that would entail, such as whether you’d like any pain or symptoms managed with medicine
• Your preferences regarding medical interventions, including whether you’d like to receive life-saving resuscitation or intravenously administered fluids
• Your wishes regarding organ and tissue donation.

But the beauty of an advance care plan is that it can also include the smaller things that matter dearly to you, including:

• Any religious or spiritual beliefs that you feel are important for your care to reflect
• Who you’d like to be with you – or not be permitted to be with you – in your last days
• What comfort means to you; for example, do you like to bath or shower even when you’re ill, or do you sleep with the light on or off
• Any special belongings, music or pictures that you’d like with you at home or in hospital
• Who you’d like to care for your pets or garden when you’re not able to do so
• Personal messages for family and friends that you’d like them to read as you near the end of your life.

Lana Glogowski says creating, and updating, an advance care plan and ensuring your family and doctor have copies of it, has big benefits for you and your loved ones.

“There are some key things it informs them of, such as whether you want to have medical treatment that allows you to stick around for as long as possible,” she explains. “Plenty of people don’t want endless treatment that keeps them alive but delivers little quality of life. Others want everything medicine has to offer, and lots of people are at various places between those two extremes.”

Knowing what level of life-sustaining treatment you wish to receive, and whether you’d prefer to spend your time in a healthcare setting or at home, can help your family and your doctor to reduce the number of hospital visits you make near the end of your life and focus on managing your treatment at home, Glogowski adds.

“An advance care plan removes the decision-making burden from others – without one, what you’re doing, in effect, is putting an increased burden of responsibility on a loved one who may not know the specifics of your wishes,” she points out. “These situations will always be difficult but being able to say ‘this is what Mum or Dad wanted’ can be a huge relief to your loved one.”

How do I start advance care planning?

Having a conversation about your end-of-life wishes with your family is the first step, and can help you better define your thoughts on what to include in your written plan.

“If you just have the talk, you’re way ahead of the eight-ball,” Glowgowski says. “Even if you haven’t written it down, emergency physicians say it’s immensely helpful for your family to be able to explain your treatment wishes to them.

“But if your children don’t want to, or can’t, have that conversation with you, writing it down is hugely valuable so you’re all on the same page.”

A discussion with your doctor is also important because they can make sure you’re informed of the treatment options that are likely to be open to you at the end of life.

Your state or territory may have a different name for the local equivalent of an advance care plan; in Queensland and the Australian Capital Territory it’s called a statement of choices, in New South Wales a statement of values and wishes, in Tasmania and South Australia an advance care directive and in the Northern Territory an advance personal plan.

In WA, you can fill out an advance care planning document provided by the state government. Palliative Care WA supplies access to the form, plus all of the information you need to start your advance care planning on its new site youonlydieonce.com.au. It also runs free, two- or four-hour advance care planning workshops to help you get started.

Once you’ve done your advance care planning you should keep the all original documents in a place that your loved ones can easily find. Digital versions can be provided to your GP and any hospital at which you’re already being treated, and uploaded to the national My Health Record system run by the federal government.

Do I have to do all aspects of advance care planning?

Any end-of-life planning you do now will have a positive impact on the quality of your death and is helpful to your loved ones, but for maximum control over the last stage of your life, it’s advisable to complete a full plan that takes in all of the elements around care, comfort and treatment.

As Lana Glogowski says, “We never say that advance care planning makes these situations easy, but it does make them easier.”