Preventing Deathbed Shocks: Jerry Romano’s Story

Conversations about advanced heart disease happen in bubbles. The cardiologist, the patient, and the adult children are all in different bubbles with access to different data and often make health care decisions in isolation without talking to each other. The goal of this panel discussion is to get a patient (Jerry Romano, Air Force Veteran and author of The Monkey Corner) on hospice care with end stage heart disease, a daughter (Katy Butler, author of Knocking on Heaven’s Door) who made end of life decisions for her parents and a cardiologist (Dr. Dipanjan Banerjee) to have a candid discussion about how we make end of life decisions in advanced heart disease and what we can do better. The panel is moderated by Dr. Periyakoil.

Jerry Romano, an Air Force Veteran and a retired engineer was diagnosed with heart disease twenty years ago and was receiving treatment for it. Three years ago, he complained of profound lack of energy and after further testing had both a pacemaker and a defibrillator implanted. The defibrillator is a device implanted under the chest skin and it prevents sudden death due to abnormal and fatal heart rhythms that are common in patients who have advanced heart disease. A pacemaker is also an implantable device that maintains the heart rate in people who have a abnormally low heart rate.

Patients often do not know the difference between the pacemaker and the defibrillator and many doctors do not describe it in simple language so that patients can make an informed choice about whether or not they want these devices and when they can ask to discontinue them. Implanting a pacemaker-defibrillator is a permanent procedure and it is important to ask  doctors to explain what device (s) are being implanted, a pacemaker, a defibrillator or both. It is also important to realize that having discussions about turning off the pacemaker is difficult for not just patients and families but also for their cardiologists who are often uncomfortable about having these conversations.

“When we asked for the pacemaker to be discontinued, we were treated as moral monsters ( by the doctors) and the answer was an absolute no!” says Katy Butler in describing her family’s experience with her father’s pacemaker.

Why do doctors resist attempts to discontinue devices and ineffective interventions? Why don’t doctors discuss the stop criteria i.e. under what circumstances would it be wise to when to discontinue an implanted pacemaker and defibrillator?  It is possible but unlikely that doctors avoid these sensitive conversations just for  monetary reasons. There are two main reasons as to why doctors do not have these important conversations about device discontinuation with their patients: Many doctors have philosophical concerns related to discontinuing a device as this may potentially hasten their patient’s death.  Also, doctors lack the training and the skill in holding end-of-life conversations with their patients.

“We felt betrayed and abandoned by medicine” says Katy as she describes her family’s experiences with her father’s care. Katy and her mother Valerie Butler asked her father’s doctors to discontinue Jeff Butler’s pacemaker. However, they met with great resistance from her father’s cardiology team and Katy and her mother were “made to feel like they were moral monsters”. In response, Valerie Butler stopped taking her husband, Jeff, to any of his cardiology appointments and stopped all his medications. While this helped them regain some sense of control with this very difficult situation, they felt isolated and abandoned by the doctors.Doctors should take the moral burden off the patient and family so they do not feel that turning of the defibrillator is committing suicide” says Katy Butler. This will prevent patients from getting deathbed shocks and allow them to die with peace and dignity.

“Sometimes we hide behind the idea that our patients cannot handle it (end-of-life conversations). In fact, the truth is that we cannot handle it” says Dr.Banerjee.  Her father’s death, taught Katy that doctors were reluctant to discontinue devices and uncomfortable having end of life conversations. Forewarned, Katy and her mother  refused to blindly consent to cardiac surgery for her mother’s heart valve problem. Instead, they insisted on having a conversation with the cardiologist about the pros and cons of having cardiac surgery.  Valerie Butler made an informed decision to forego surgery and decided that she wanted to die naturally. At peace with her decision, Valerie went home, “cleaned out her basement, made peace with her children”  said her goodbyes and died naturally and peacefully at home.

As for Mr. Jerry Romano, he discontinued his defibrillator and is currently receiving concurrent care from both cardiology and palliative care. He still has good quality of life and is not quite ready to discontinue his pacemaker . However, Jerry feels like he has a good rapport with his doctors and can easily ask for his pacemaker to be discontinued when he is ready. He takes comfort in knowing that his doctors will listen to him and honor his wishes when the time comes.

Posted 11/30/2013.

For Katy Butler’s interview, please click here


For a recent JAMA IM editorial on this topic of deathbed shocks, click here

Who should watch this video panel?

This panel is meant for the general public as well as health care personnel. Please feel free to share it widely with your friends and family struggling with heart disease and other chronic illnesses.

Panel participants:

  • Dr. Dipanjan Banerjee, MD, A cardiologist with special expertise in end stage heart failure
  • Ms. Katy Butler, Award-winning journalist and author of the book “Knocking on Heaven’s Door
  •  Dr. VJ Periyakoil, MD, (Moderator) Geriatrics and Palliative Care Expert, Director, Stanford Palliative Care Education & Training
  • Mr. Jerry Romano, An Air Force Veteran and a retired engineer with advanced heart disease who discontinued his implanted defibrillator. Mr. Romano is the author of the book The Monkey Corner.

If you have any questions for the panelists, please post them in the comments section and we will compile them and post the answers on the portal.

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  • Charlie Antoni, ACHP-SW

    Thanks again Dr. VJ and this panel. The unscripted conversation adds a much needed reality in preparing people for what I believe is a signifcant change in health care. The change as I see it is from consumers to participants. To quote a friend from a workshop I attended several years ago “its all about the relationship”. And I feel the relationship works best when its based on truth telling. In coversations with the people I work with a starter question is “how much of the truth about this situation we are in do you want to know. And if you don’t want the full truth who would you like me to share the full truth with?” This provides an opportunity for the idividual to express what it is that they want on the continuum of life at any cost …just keep me comfortable even if that means I have to be sedated. The difficulty in engaging in this process is what my marriage and family therapy professor called “the relational dance”. This involves determining on any given day in any give conversation how close or how distant does this exchange need to be. It fraught the potential for error. But that is what makes relationships worth having. Whether that relationship is with your closest friend or you health care provider. Each of those relatiionships requires intimacy and with intimacy it is hard to define “professional diestance” and exploring the boundaries of professional distance is a scary thing. And like any relationship there are a number of variables that each person brings (culture, ethnicity, economics, authenticity, congruence, spiritual values, ethics, and life lived). There is not a formula that can be provided that will give each member a convineient and pat script. It is a process however that is worth pursuing.

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  • Sandra Escalante

    Knowing that you have a terminal or chronic degenerative disease is not easy to handle. Often the patient is in a committed emotional state. When consulting the doctor about treatments that are related to his illness and his life, the patient should go to consultation accompanied by a family member who has control of his own emotions and the ability to reasonably have a conversation about the possible medical treatments, so that in this way you can help your ill family member to make a decision on the best medical treatment for their health and their life plan. It is important to ask the doctor everything related to medical treatment in order to make good decisions from the first treatment or medical intervention.
    The patient has the right to have the doctor explain absolutely everything medical treatment and be helped by his family member accompanied by him to decide and choose which treatment is good for his health and life´s project. When the doctor does not give a clear explanation of what is being asked of the treatment, it is best not to take decisions at the time, think about the questions resolved by the doctor, consult other specialists to give greater clarity on possible treatments before make the best decision with your ill loved one.
    Sandra Escalante