Dying at home: ideal meets reality

May 13, 2013
Rosie_O_Beirne dying at home hands on pink blanket google

Most people say they want to die at home. But not my friend. After the fraught experience of having nursed her dying mother at home she told her young-adult children: “Just to be clear, I never want to die at home.”

Her words surprised – even shocked – me when she told me. Now I realise a new kind of political correctness has taken hold. Just as natural childbirth was the gold standard in our childbearing years today we face a new character test: to ensure our ageing parents have a good death at home. It’s an ideal that’s turned into a mantra. I’ve chanted it myself. But having heard my friend’s experience, it seems to me the world-wide dying-at-home movement is setting up many people to feel like failures.

It’s a privilege to be able to care for your dying parent, my friend says. “I’m happy to have been able to look after my mother.” But it was also exhausting, distressing, and the dying went on too long. There was too little professional help, unequal burden-sharing and major tensions with one of her two siblings. Looking back, much of it was fraught, especially the last two days. Why did they persist? My friend knew her mother felt she had betrayed her husband by taking him to a hospice for the last three days of his life. And one sibling was insistent. But had her mother expressed a strong desire to die at home? It was hard to be sure. It’s simply in the zeitgeist, the right thing to do. It’s a badge of honour for a loving child to wear.

Yet the memories are not of a peaceful time, sitting by the bedside and holding her beloved mother’s hand. The memories are dominated by the exhaustion, sibling tension and physical work involved in caring 24/7 for someone in the last two weeks of her life.

I guess most of us hope death will come to us quick and easy, asleep in our bed, or maybe like a bolt of lightning while we’re finishing the cryptic crossword at the kitchen table. But for most people who live to an old age, death comes slowly from a number of chronic conditions such as diabetes and dementia, heart failure, and cancer. Dying can take a long time, and those who’ve promised to care for a loved one at home till the end can be in for a long haul.

And it’s not a pretty process: incontinence, endless clothes washing, turning a loved one through the night, changing them, and administering morphine can all be part of what’s involved.

A palliative care nurse visited every day to help my friend’s mother, and a doctor came regularly. But it was not enough. My friend had to push for special equipment, including a hospital bed that was slow in coming. And she had the impression that because she and her siblings were well-educated and middle-class, there was an assumption they were coping. But after their mother fell into a coma, they were unravelling.

The expected death did not come quickly and four days later, at breaking point, my friend called the palliative care team and asked for their mother to be taken to a hospice. There my friend, with the kind nurses taking over, could stop being a carer and start being a daughter. But one hour after their arrival, her mother died: “I’m convinced now she’d been hanging on because she didn’t want to die at home,” my friend says. “I wish I would have taken her to the hospice a couple of days earlier.”

I told this story to Carolyn Walsh, president of Palliative Care NSW. She said some people had idealistic notions about dying at home “as though it was all good. It may or may not be.” Her own mother, whom she helped nurse during a long illness, spent her last ten days in a hospice. What was needed, Carolyn said, were better palliative care services in whatever setting people chose, whether home, hospital, or aged care residence: “Too many people are rushed into emergency departments who wouldn’t need to be there if there was adequate palliative care nursing.”

Some years ago, my friend had been part of a roster of carers for a woman who was dying at home. The woman was in her early 50s, much loved, and there was a queue of people willing to help her husband. Even so, it was hard. When elderly people are dying, friends are also old and sick, in no position to do the practical work. And if families are small, and on top of that riven by sibling antipathies, elderly parents, no matter what their wishes, might not get to die at home. I don’t think anyone should feel guilty. Better, I believe now, to aim for a good death than a home death.

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