Giving the Ultimate Gift: Granting the Wish to Die at Home

Photo by Alexandre Dulaunoy (CC BY-SA 2.0)

At The Australian, Andrew McMillen writes on palliative care as a critical service, and of the “power and the grace” required to care for those who are terminally ill and grant their final wish: to die peacefully, at home.

On an adjustable bed in a room towards the front of the house is Tony Huelsmann, a retired dancer, choreographer and dance instructor whose skills were once in high demand at schools throughout Melbourne and Brisbane. Sandra was one of his dance students. He was 30 when they met, seven years older than her, and it was love at first sight.

Born in Germany, Tony has spent much of his life in Australia. Now 80, he is dying from complications associated with several internal and ­external cancers, including a rash of angry red squamous cell carcinomas that have colonised the skin of his swollen upper thighs. These painful sores require daily dressings, performed by a personal care worker, while Karuna’s rotating ­roster of nurses help with symptom management, bed-baths, toileting and bedding changes, as well as emotional support for both husband and wife.

Since May, Tony’s world-spanning life has been confined more or less to these four walls while Sandra cares for his every need. At night, she snatches sleep where possible. It is their wish for Tony to die at home and they are both determined to see this wish fulfilled.

“A good palliative care nurse should be invisible,” she says, while navigating her hatchback between house visits. “You’re there to help them negotiate the process with friends and loved ones. The Dalai Lama says compassion should be selfless: it’s not about you, it’s about them. You’re a springboard. But it’s a real dance: you’re not a robot, and you go in with your whole self and heart open. We’re all emotionally involved, and the moment you’re not – when it becomes mechanical – I think you should quit.”

By midday Friday, Tony has lost more strength and lucidity. Swollen from the waist down, he has little control of his body. Today, for the first time, he is unable to use scissors to cut the tape that his wife uses to dress his sores. When Karuna nurse Kate Hooper visits his bedside, Tony clocks her prominent baby bump. A man near death meets a woman weeks away from giving birth. Pointing a shaky finger, he smiles and rasps to her, “How long to go?”

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