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.
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.
- 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.