Knocking on Heaven’s Door: A Conversation with Katy Butler

“My mother got more information when she bought a car than when she was making the decision about my father’s pacemaker” says Katy Butler, award-winning journalist and author of the new book “Knocking on Heaven’s Door. Katy’s father, Jeffrey Butler, had suffered a stroke and also developed a painful hernia. His insurance refused to pay for the truss he needed for his hernia, forcing Katy’s father to opt for surgical repair of the hernia against his better judgement. As a part of a routine pre-operative evaluation, Jeff Butler was seen by a cardiologist and was “given a pacemaker”. Katy says that her father’s insurance “refused to pay for a $200 truss but would pay for a $7500 pacemaker without any questions.”

In this part, Ms. Butler and Dr. Periyakoil discuss how the penny-wise-pound-foolish health care system rewards doctors and hospitals for providing highly technical and often wasteful procedures but becomes foolishly frugal and refuses to reimburse important conversations between patients and their doctors.

Part 2

Few years after the pacemaker was placed, Jeffery Butler’s organ systems started to slowly quit. But his five year old shiny new pacemaker continued to tick very efficiently inside his aging and slowly dying body. Butler’s mother Valerie asked for Katy’s help to “get Jeff’s pacemaker turned off,” When Katy Butler asked for help to shut down her father’s pacemaker, she met with tremendous resistance from his doctors. Her father’s cardiologist told her and her mother that (turning off her father’s pacemaker and allowing him to die) was immoral. “Saying no (to a pacemaker) feels like a natural process” says Butler. “But if you remove a device, you feel almost like you are murdering and it is a horrible horrible feeling. We are sacrificing the people we love on the alter of maximal longevity. I think we did the loving thing, the moral thing and the kind thing ( in discontinuing the pacemaker), but it did not feel that way”.

In this part 2 of the video, Ms. Butler and Dr. Periyakoil discuss the need for preparing for the end of life and the importance of having conversations about end of life conversations when the patient is still able to express her wishes.

Part 3

In this final part of the video discussion, Butler describes her mother’s death. Valerie Butler was told that she needed open heart surgery but she refused to have surgery. “3 sets of cardiologists tried to get my mother to change her mind” says Katy. Having learned from her fathers experiences with the pacemaker at the end of life, Katy and her mother stood firm against the doctors and refused the open heart surgery. Katy takes solace in how she made the right decision about her mother’s care which allowed her to die gently and naturally with peace and dignity.

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  • Charlie Antoni

    The conversations were thought provoking on a number of issues. First I was struck about Katy’s concern about discomfort with discussion of these important topics. My immediate reaction is I hope we never get to comfortable with these conversations. My hope is that we become more willing to have these “uncomfortable” discussion in a thoughtful, reflective, and contemplative way. These conversations are not efficient but they are very effective and require willingness on the part of both the consumers and the providers. These conversations need to take place in a safe and neutral place where both the benefits and the burdens can be affectively aired and conclusions can be reached and supported by all parties (the individuals, family supporters and providers. It is challenging for providers to have the skills to convey information that can be complex, mysterious, and emotionally charged to both the articulate and the inarticulate in an atmosphere of expectation and litigation. It is also important for those of us attempting to illuminate these challenges to be careful not to limit the arena to those in their 8th and 9th decade “the old …old”. Each decade in which we may personally or provisionally encounter these conversations, deliberations, and decisions each carry their own set of complexity and emotionality over lying the basic underpinnings of life and death.

  • Nilanjana Maulik

    The final part of the video discussion reminds me of my position a year back. I had my father detected with Multiple Myeloma and the doctors asking me to shift him into ICU care so that he can be taken care well. I had asked them what they meant by “well” and they had said- daily blood, calcium level monitoring, ventilator if he needed, tube feeding for his last few days. I told them of my father’s wishes, however I had to fight with them literally because there is nothing as “advance directives” in India yet. But I insisted and signed “No” for all possible treatment in the checklist of ICU. They said,” then why is he in ICU”? At last, with the support of one of the doctor I shifted him to a carebed in the same hospital where I could be with him 24hrs and he died peacefully. Lot needs to be done in terms of education of health care professionals.