In 2001 journalist Katy Butler’s father suffered a stroke at the age of seventy-nine. A year later a hurried decision was made to equip him with a pacemaker, which kept his heart going while doing nothing to stop his descent into dementia. In 2007 Butler’s mother, exhausted from being her husband’s full-time caregiver and distressed by his suffering, asked her daughter for help getting the pacemaker turned off. Butler agreed, and so began a long investigation into how modern medicine has changed the way we approach the end of life. (...)
In 2010 she wrote about her father’s death in The New York Times Magazine. The piece, titled “What Broke My Father’s Heart,” won awards from the Association of Health Care Journalists, the Family Caregivers’ Association, and the National Association of Science Writers. It went on to become the basis of Butler’s first book, Knocking on Heaven’s Door: The Path to a Better Way of Death. In addition to recounting her family’s experiences with her father’s slow decline, the book looks at Butler’s mother, who died fairly quickly a year and a half later, after refusing open-heart surgery. “Her death was totally different,” Butler says. “She was continent and lucid to her end, and she died the death she chose, not the death anyone else had in mind.”
Since the publication of Knocking on Heaven’s Door, Butler has spent the majority of her time on the road, giving talks about overtreatment, end-of-life care, and “perverse” economic incentives in the medical industry. She’s become an advocate for the growing Slow Medicine movement, which focuses on “non-rushed medical decision-making, palliative care, and comfort-giving treatment, especially as the end of life approaches,” according to its Facebook group.
Mowe: How has the development of modern medicine transformed our experience of death?
Butler: Death used to be a spiritual ordeal; now it’s a technological flailing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into the hospital and mechanized it, putting patients, families, doctors, and nurses at the mercy of technology. Nonetheless we still want death to be a sacred occasion.
Mowe: What about those who are more secular in their beliefs?
Butler: I think many of us aren’t as secular as we claim. We’re a society of seekers. Maybe we don’t like organized religion, but we yearn to place the events of our life into a larger, more meaningful context. We want death to be about more than the end of a person’s life. Death is part of an eternal pattern. Obviously if I’m dying, for me that is a major tragedy. But billions of people have died before me and have faced death with varying degrees of courage. A sacred understanding of that can help both the dying and the survivors.
Mowe: And this notion of sacredness has been undermined by modern medicine?
Butler: In the mid-twentieth century there was an explosion of postwar inventiveness: dialysis, the respirator, the ventilator, the defibrillator, the pacemaker. We invented a panoply of devices that both prevented sudden death and in some instances literally brought people back to life. But when we eliminated sudden death, we also eliminated natural death, and we lost the distinction between saving a life and prolonging a dying.
by Sam Mowe, The Sun | Read more:
In 2010 she wrote about her father’s death in The New York Times Magazine. The piece, titled “What Broke My Father’s Heart,” won awards from the Association of Health Care Journalists, the Family Caregivers’ Association, and the National Association of Science Writers. It went on to become the basis of Butler’s first book, Knocking on Heaven’s Door: The Path to a Better Way of Death. In addition to recounting her family’s experiences with her father’s slow decline, the book looks at Butler’s mother, who died fairly quickly a year and a half later, after refusing open-heart surgery. “Her death was totally different,” Butler says. “She was continent and lucid to her end, and she died the death she chose, not the death anyone else had in mind.”Since the publication of Knocking on Heaven’s Door, Butler has spent the majority of her time on the road, giving talks about overtreatment, end-of-life care, and “perverse” economic incentives in the medical industry. She’s become an advocate for the growing Slow Medicine movement, which focuses on “non-rushed medical decision-making, palliative care, and comfort-giving treatment, especially as the end of life approaches,” according to its Facebook group.
Mowe: How has the development of modern medicine transformed our experience of death?
Butler: Death used to be a spiritual ordeal; now it’s a technological flailing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into the hospital and mechanized it, putting patients, families, doctors, and nurses at the mercy of technology. Nonetheless we still want death to be a sacred occasion.
Mowe: What about those who are more secular in their beliefs?
Butler: I think many of us aren’t as secular as we claim. We’re a society of seekers. Maybe we don’t like organized religion, but we yearn to place the events of our life into a larger, more meaningful context. We want death to be about more than the end of a person’s life. Death is part of an eternal pattern. Obviously if I’m dying, for me that is a major tragedy. But billions of people have died before me and have faced death with varying degrees of courage. A sacred understanding of that can help both the dying and the survivors.
Mowe: And this notion of sacredness has been undermined by modern medicine?
Butler: In the mid-twentieth century there was an explosion of postwar inventiveness: dialysis, the respirator, the ventilator, the defibrillator, the pacemaker. We invented a panoply of devices that both prevented sudden death and in some instances literally brought people back to life. But when we eliminated sudden death, we also eliminated natural death, and we lost the distinction between saving a life and prolonging a dying.
by Sam Mowe, The Sun | Read more:
Image: Eugene Richards for The New York Times
