{"id":342887,"date":"2025-12-30T13:46:16","date_gmt":"2025-12-30T13:46:16","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/342887\/"},"modified":"2025-12-30T13:46:16","modified_gmt":"2025-12-30T13:46:16","slug":"the-importance-of-preparing-for-death-and-creating-an-end-of-life-health-care-plan","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/342887\/","title":{"rendered":"The importance of preparing for death and creating an end-of-life health care plan"},"content":{"rendered":"

Dying in sudden, unexpected circumstances is not something people factor into their life plan.<\/p>\n

Generally, we like to think death happens in old age, and for most Australians, that is the case.<\/p>\n

But the reality is things can change in an instant, with life-changing decision-making thrust into the hands of our loved ones.<\/p>\n

When Perth woman Annette and her late husband Ian found out he had a rare, aggressive form of cancer, she knew they had to plan ahead.<\/p>\n

\"A<\/p>\n

Annette sought help to make arrangements for her husband Ian’s end-of-life health care. (ABC News: Rani Fletcher)<\/p>\n

Diagnosed with cancer of the bile duct and treated with intensive palliative chemotherapy and radiation, Ian was told his life expectancy was less than five years.<\/p>\n

“I was just looking ahead knowing Ian was terminally ill,” she said.<\/p>\n

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The couple went to their GP to initiate an Advance Health Directive, as it is known in WA \u2014 a legal document outlining a person’s preferences for their end-of-life health care.<\/p>\n

But at 20 pages long and involving no discussion with their GP, it was a challenge.<\/p>\n

“We’d gone to our GP and he gave us this form with some advice on how to do [a directive], and we looked at it, and it was too hard,” Annette said.<\/p>\n

Assistance key<\/p>\n

That is when Annette enlisted the help of Palliative Care WA.<\/p>\n

“[They] would say to us, ‘What do you want to happen? Explain it to me,'” she said.<\/p>\n

For Ian, this meant refusing life-saving or prolonging intervention if he was approaching unresponsiveness or an end-of-life phase.<\/p>\n

\"A<\/p>\n

One-to-one assistance can help people plan for dying and what they want from the rest of their life. (ABC News: Rani Fletcher)<\/p>\n

His wishes were then translated into medical and legal terminology that were written into the directive.<\/p>\n

Annette described how one-to-one assistance made completing a directive “so much easier”, and without it she believed they “probably would have put it off again”.<\/p>\n

Having a plan, she said, meant when Ian’s health deteriorated, there were no disagreements among the family about the next steps.<\/p>\n

The difficulties Annette and Ian encountered are not uncommon.<\/p>\n

In 2021, just 2 per cent of Western Australians across four hospitals and aged care facilities had created a directive.<\/p>\n

\"Two<\/p>\n

Palliative Care WA’s Julia Kennington (left) says people can feel overwhelmed by an Advance Health Directive. (ABC News: Rani Fletcher)<\/p>\n

“The document itself, 99 per cent of it, is very straightforward,” Palliative Care WA’s Julia Kennington said.<\/p>\n

“It’s just that people feel a bit overwhelmed by it.”<\/p>\n

Time a barrier<\/p>\n

If that documentation is not done, it falls to time-poor GPs and doctors.<\/p>\n

Australian Medical Association (AMA) spokesperson Dr David Mountain said creating a directive on the hop was “time consuming and difficult work”.<\/p>\n

“You’re not paid extra for doing the forms and filling them out. That’s supposed to be paperwork that you add on to the end of your already very long and busy day,” he said.<\/p>\n

\"A<\/p>\n

Busy GPs are often left to pick up the pieces on top of their normal patient workload. (ABC News: Maren Preuss)<\/p>\n

He said the challenge was not just in GPs initiating these conversations, but in health professionals locating and following the directives.<\/p>\n

The ABC spoke with several people who work in the sector.<\/p>\n

They pointed out challenges in identifying and locating the documents in emergency situations, when the focus was on dealing with the immediate situation at hand.<\/p>\n

Associate Professor Mountain said understaffed nursing homes had trouble managing patients, with residents sometimes transferred to emergency departments against their family’s wishes.<\/p>\n

\"Close<\/p>\n

Aged care homes face a challenge locating and following the directives in urgent situations. (ABC News: Maren Preuss)<\/p>\n

“[The directives are] either not seen and so people don’t know they’re there or they’re just not followed, because what’s going on in the nursing home at the time means [staff] don’t feel they can follow it or provide the care that’s required,” he said.<\/p>\n

Exceptions to adherence<\/p>\n

Advance Care Planning Australia \u2014 the peak, government-funded national program providing resources and education on advance care planning \u2014 said there were certain circumstances where parts of a directive do not have to be followed.<\/p>\n

“If the instructions are ambiguous or uncertain, this may be grounds for a health professional to not be required to follow them,” a spokesperson said in a statement.<\/p>\n

The conversation families avoid, and why it matters when time runs out<\/a><\/p>\n

Many people struggle to approach the subject of death with family, and what kind of care they want to receive in their final months or years.<\/p>\n

They said it was important the document outlined key, ideal outcomes, such as living in your own home.<\/p>\n

In 2025, just one-third of Australians had engaged in a form of planning for end-of-life care, and just 6 per cent had created a directive.<\/p>\n

But experts think Australians are also deterred by an unwillingness to talk about death.<\/p>\n

End-of-life consultant and educator Dr Annetta Mallon said death had become less visible in our day-to-day lives over the last century.<\/p>\n

\"A<\/p>\n

Dr Annetta Mallon says talking about death is vital for coming to terms with it. (Supplied: Annetta Mallon)<\/p>\n

“We used to die at home, have all of our after-death, body care rituals [and] waking often done at home,” she said.<\/p>\n

“The language that we use frames the permissions we have to talk openly about something or not.<\/p>\n

“If we cannot be explicit in talking about something, we cannot be explicit in trying to come to terms with it.”<\/p>\n

Talking about death<\/p>\n

Dr Mallon compared end-of-life conversations to being “kind of like taxes”.<\/p>\n

“I don’t necessarily always want to do my taxes, but it’s important to do them,” she said.<\/p>\n

Annette said Ian’s plan was “vital in communicating his wishes to his end-of-life carers”.<\/p>\n

“There’s so many decisions you have to make after that person’s gone, and if you don’t know [their wishes] it’s very hard,” she said.<\/p>\n","protected":false},"excerpt":{"rendered":"Dying in sudden, unexpected circumstances is not something people factor into their life plan. Generally, we like to…\n","protected":false},"author":2,"featured_media":342888,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[43],"tags":[2989,26276,132968,132962,102,2960,132964,17352,132965,132963,132966,56,132967,54,55,17285],"class_list":["post-342887","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-death","tag-dying","tag-end-of-life-care","tag-end-of-life-plan","tag-health","tag-healthcare","tag-palliative-care","tag-perth-news","tag-planning-for-death","tag-planning-for-end-of-life","tag-talking-about-death","tag-uk","tag-unexpected-death","tag-united-kingdom","tag-unitedkingdom","tag-wa-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/342887","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=342887"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/342887\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/342888"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=342887"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=342887"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=342887"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}