Knocking on Heaven’s Door for Six Years

Katy Butler, author and journalist

Journalist Katy Butler had her own difficult experiences trying to get her father’s advance directive enforced. In her best-selling memoir Knocking on Heaven’s Door: The Path to a Better Way of Death, Butler recalls going up against a wall of resistance when the physician refused her request to withdraw medical treatment for her dying father. “Hospitals are a world of their own, medicine is a world of its own,” said Butler, “It has its own rules. It’s like a foreign subculture. And once you enter into that system, it can be very, very difficult to get your wishes put into practice.”

In 2001, Butler’s 79-year-old father suffered a major stroke at his home in Connecticut, which caused brain damage and dementia. He had a weak heart and probably would have died of natural causes much sooner. But his pacemaker kept him alive for the next six years. In her memoir, Butler writes that the extra years of life caused him great misery. “My father’s sight dimmed so much that he could no longer read The New York Times,” she wrote, “His balance became so unsteady that my mother no longer let him
Katy Butler with her parents,
Valerie and Jeffrey Butler
walk on his own. He became bowel and bladder incontinent. His brain became so damaged that he could not form a plan to get to the bathroom on time when he needed to. But not damaged enough to keep him from being ashamed and remorseful.” According to Butler, her father got worse over time and his depression had increased. He told her he was “living too long.” “His life went on, thanks perhaps to his pacemaker, and he could do nothing about it but endure,” writes Butler, “The tipping point had come. Death would have been a blessing and living was a curse.”

As his medical representative, Butler requested that the pacemaker be turned off. “The cardiologist not only refused to cooperate—he really treated us as though we were some kind of moral monster,” said Butler, “Technically according to the law, you have the right to refuse any form of medical treatment and you have the right to request the withdrawal of any form of medical treatment. But you’ve got an advanced device like a pacemaker—you don’t know how to turn it off. You don’t know where to go to get someone to help you turn it off if your cardiologist is saying no.”

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