Lessons from Twelve Days at My Father’s Bedside: Why Advance Care Planning Matters

For the final twelve days, my father lay unconscious and unresponsive in a hospital bed on Queensland’s Sunshine Coast.

My mother sat beside him night and day, holding his hand. I massaged Dad’s swollen legs— a result of edema—while keeping his mouth moist. His breathing often came as a gurgle. My brother and I alternated sleeping on a stretcher in what the staff called the “dying room.”

I whispered, “You can go now; we love you.” Yet he clung to life for twelve more days. Had he been aware of his condition, he likely would not have wanted to continue.

We were anguished, wondering what he might have sensed. Was he afraid? In pain, yet unable to speak?

A nurse reminded me that dying can be a grueling, drawn‑out process.

Without his clear wishes, the ordeal could have been far longer and more distressing.

Soon after his prostate cancer diagnosis in 2005, my father completed a legally binding advance health directive—Queensland’s term for an advance care directive. These documents record a person’s wishes for medical treatment when they can no longer decide or communicate, such as during unconsciousness or after a severe accident.

His directive refused life‑sustaining measures such as CPR, mechanical ventilation, and artificial feeding, opting instead for a swift death with only palliative care to maintain comfort.

Although those days in the dying room offered little comfort, the situation could have been far worse.

‘Determining Which Family Member to Trust’

One afternoon at the nurses’ station outside his room, I witnessed three relatives and a doctor locked in a heated, circular argument over his care.

At least we knew his wishes, yet few Australians share that clarity—only 33 % have done any advance planning, and just 6 % have completed a formal ACD, per a 2025 study by Advance Care Planning Australia.

Without a binding directive, patients may undergo unwanted aggressive interventions, while families often clash over care decisions amid already overwhelming stress.

I was in hospital for four months! I’ve had a million needles and a million tests. It’s a lot. And it’s not just a lot for me, it’s a lot for Dawn

John Groves, retiree

Associate Professor Davinia Seah, head of palliative medicine at St Vincent’s Hospital in Sydney, often observes family disputes over care. She recalls instances where one relative urged comfort‑only care with morphine, while another insisted on aggressive ICU interventions, intubation, and everything possible—yet without documented wishes, it’s impossible to know whose voice to follow.

Seah notes that how we die often mirrors how we have lived: long‑standing family conflicts tend to resurface at the bedside. Queensland’s AHD form even provides a section to note which individuals should be excluded from health‑care discussions.

Seah adds that clinicians appreciate when a family member can convey the patient’s wishes, such as saying, ‘Mum made clear she never wanted to be kept on machines.’

Without a directive or appointed enduring guardian, clinicians are left guessing. Seah describes a current patient with mild cognitive impairment whose supportive neighbours have not been legally authorized to decide, forcing the team to question whether those neighbours truly act in the patient’s best interest—a difficult predicament.

She stresses that having a directive is useless if it cannot be accessed when needed. Recently she spoke with an 87‑year‑old woman admitted for heart issues who possessed an advance care directive, yet the document remained with her solicitor, making timely retrieval a hassle.

An unnamed physician shared that she helped her parents complete their directives, though convincing her mother to consider future care was challenging. “My mother is fiercely independent—she’d rather die than accept help with bathing—but she avoids discussing what might lie ahead,” the doctor said. “I’ve seen too many older patients suffer in hospitals or endure harm from well‑intentioned CPR and life‑sustaining treatments when their preferences aren’t documented.”

‘If This Fails, Just Let Me Go’

John Groves, a retiree from New South Wales, completed an advance care directive after several near‑death experiences in the past year. “Everything is now documented—our wishes are clear,” he said during a Zoom call from his Port Macquarie lounge, glancing at his wife Dawn. “For us, it’s straightforward.”

Fifteen years earlier, Groves was diagnosed with cardiomyopathy. By the end of 2025 his health deteriorated rapidly. “Things worsened quickly,” he remarked.

In September he collapsed at his cardiologist’s clinic, was resuscitated and intubated at Port Macquarie Base Hospital, then flown to Sydney. “It was frightening,” said Dawn, a social worker and case manager at the Kempsey correctional centre.

At St Vincent’s Hospital he received a mechanical heart pump, only to develop a liver infection shortly after. Discussing the toll on his family, he grew emotional: “They’ve been told repeatedly that I might not wake up—it’s been hard on them.”

A palliative‑care specialist at St Vincent’s advised Groves to prepare an advance care directive, visiting a few times to talk through the options and leaving paperwork for review.

The choices John recorded in his advance care directive stem from his concern for his family. “I spent four months in hospital, endured countless needles and tests—it’s overwhelming, not just for me but for Dawn too,” he said, gesturing to the battery pack and controller of his heart pump. “If it stops, just let me go.”

His directive specifies that, if possible, he wishes to die at home, free of pain. He consents to resuscitation and CPR but declines renal dialysis and any treatment requiring continual drug infusion. He also states that, should he pass away outside Port Macquarie, he prefers cremation with his ashes given to his wife, and he has opted to donate his organs and tissues for transplantation.

He added, “I told them they could take whatever they needed, but I warned the doctor that there’s little left worth preserving.”

What Gives Life Meaning?

Beyond medical wishes, an advance care directive can name a decision‑maker, indicate organ‑donation intentions, and include personal values that matter at life’s end—such as having fresh flowers in the room, time in the garden, or favorite music playing.

Seah recalls patients noting in their directives statements like, “If I can’t enjoy chocolate, attend to personal hygiene, or play golf, life feels meaningless—there’s no reason to extend it.”

I reflect on what gave my father joy as his health declined: savoring meals, strolling to the corner shop for a newspaper, reading to his grandchildren. In his final weeks those pleasures vanished, replaced by constant pain.

I also recall a friend who has arranged every conceivable end‑of‑life paper—her will, an advance care directive, and more—who remarked, “If you lack children or a partner, sorting out these documents becomes essential.”

I located an advance care directive form on the NSW Health website and printed it.

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