Tag Archives: palliative care

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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Near-Death Experience as Training to Care for the Dying

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In The New York Times Magazine, Jon Mooallem has a moving profile of doctor B.J. Miller, a triple amputee since an accident in his sophomore year of college, who’s now developing something he’s calling The Center for Dying and Living. Layered into the piece is a secondary profile of Randy Sloan, the late 27-year-old motorcycle builder who became a patient of Miller’s three years after he tricked out a bike for the doctor’s special needs. The former executive director of The Guest House, a Zen hospice center in San Francisco, Miller’s approach to palliative care is informed by his own near-death experience, and finding his way back to living.

It wasn’t that Miller was suddenly enlightened; internally, he was in turmoil. But in retrospect, he credits himself with doing one thing right: He saw a good way to look at his situation and committed to faking that perspective, hoping that his genuine self might eventually catch up. Miller refused, for example, to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a “variation on a theme we all deal with — to be human is really hard,” he says. His life had never felt easy, even as a privileged, able-bodied suburban boy with two adoring parents, but he never felt entitled to any angst; he saw unhappiness as an illegitimate intrusion into the carefree reality he was supposed to inhabit. And don’t we all do that, he realized. Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could “reincorporate your version of reality, of normalcy, to accommodate suffering.” As a disabled person, he was getting all kinds of signals that he was different and separated from everyone else. But he worked hard to see himself as merely sitting somewhere on a continuum between the man on his deathbed and the woman who misplaced her car keys, to let his accident heighten his connectedness to others, instead of isolating him. This was the only way, he thought, to keep from hating his injuries and, by extension, himself.

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