(The author has been an active supporter of the death-with-dignity (DWD) movement since the 1980s with the Hemlock Society. He is a board member of Final Exit Network and is also a member of Exit International. He is a life-long advocate of civil and human rights everywhere and believes that the choice to die on one’s own terms is a basic human right. – Jay Niver, editor)
Five years ago, I testified in favor of a Medical Aid in Dying (MAiD) bill before a committee of the Minnesota state legislature. After making an impassioned plea for the right of people to die on their own terms when facing the end of life, I sat down. The next person to talk, just as emphatically, said: “We physicians are not killers! This law would be a slippery slope leading to the breakdown of trust between doctors and their patients.”
I turned to my wife and said, “I know that guy: He’s my cardiologist!” I need to rely on him to deactivate the Implantable Cardioverter Defibrillator (ICD) to keep me from being shocked repeatedly as I’m dying.
I caught him in the hallway immediately after the hearing, and we both laughed at the irony of the situation. But this is no laughing matter. A family member of a dying patient reported in the Annals of Internal Medicine, “His defibrillator kept going off. It went off 12 times in one night.” The same publication did a study that found that only 10 percent of the 414 hospices surveyed had policies to deactivate ICDs, and 58 percent of their dying patients who had ICDs received shocks because their devices had not been turned off.
I don’t consider that a good death. I feel so strongly about this that I bought a strong medical magnet from a science supply store to be able to do it myself, just in case. Now if I can only remember where I put it …
My friends in the right-to-die movement told me that I need a new cardiologist. But I like him, and he is one of best-rated specialists in the state. So we had a good heart to heart talk (so to speak). It turns out that he is a life-long, devout Catholic and even a fundraiser for an anti-DWD politician. However, we agreed that if his religious beliefs prevent him from deactivating my ICD at the end of life, he will refer me to a colleague who can do it. Now, every time I visit his office we have a lively discussion about Final Exit Network and the right to die.
A few months ago, I had an upgraded device implanted.
It is highly programmable, receives instructions remotely, and is governed by a personalized algorithm. I’m very pleased with the increased energy it has given me. But I’m uneasy about having to depend on artificial intelligence to literally keep me alive. The technicians at the device center assure me that they will honor the instructions in my Advance Directive. I also need to be sure that my healthcare surrogate understands and supports what I want and don’t want when the time comes.
A couple of days ago, I consulted with a young physician from the Mayo Clinic regarding the best wording for my Advance Directive. It was disconcerting to hear him say that he hadn’t given any thought to this issue. I gave him an article on the topic, which he seemed to appreciate.
Clearly more needs to be done to include it in medical school education.
The Heart Rhythm Society recently published an excellent article, “How do I handle death and dying issues with my Implantable Cardioverter Defibrillator or cardiac pacemaker?” This is a great resource for patients and their caregivers. The pdf of this article can be downloaded here.
In answer to the question: “When would I consider turning off my ICD?” the authors advise:
“An ICD may cause significant pain when it shocks the heart back to a normal rhythm. Studies have shown that about 1 in 5 people with an ICD experience painful shocks, which they or their family find troublesome in the last weeks of their lives. It is for this reason that patients nearing the end of their lives may request that their ICD be turned off.”
The Heart Rhythm Society and the American College of Cardiology Foundation have established the IP Device Implant Registry, a nationwide program that helps participating hospitals measure and improve care for patients receiving ICDs. So I’m hopeful that those of us who have these devices will have much-improved outcomes in the future, and that mine will be turned off when I say so. Physicist, Sean Carrol, says that we human beings have an average of three billion heartbeats. I want my full share of them but no more than I need to have a good death.
A 92 yr old long time Hemlock member who is currently slightly cognitively impaired, does not want to live too much longer, fearing she will be unable to do anything about it if she continues on. She finds VSED repugnant, does not qualify for our California MAiD law, does not think she can manage the nitrogen procedure, has 35 year old Seconal or maybe Nembutal, AND a pacemaker (not an ACD so no shocks.) She is not sure if this could be her solution. She wonders: who can turn it off, if they would, and what would happen next. Specifically, would she die instantly, linger on, be in pain or discomfort, and what would be on the death certificate. I was told that only a hospice doctor could turn it off. I was also told it is a surgical procedure, albeit a short one, but with anesthesia. The article you sent was very helpful but still didn’t get all her questions answered. Do you have any answers?
Well written post on a relevant end of life concern having to do with medical technology and life supports. He understands the importance of self determination on crucial end of life decisions and has been a strong advocate for FEN many years. Hope you thoughts continue to appear here on a regular basis, Gary!
Thank you for addressing this very important issue. Your experience and the positive way you approached it is an excellent guide for the rest of us. It’s particularly noteworthy that you engaged your doctor in a manner that enabled both your values and his to be respected and honored.
Any and all mechanical devised keeping a patient alive can be disconnected and deactivated: https://s3.amazonaws.com/aws-website-jamesleonardpark—freelibrary-3puxk/CY-PLUG.html
My device technicians and cardiologists assure me that disabling a pacemaker is a simple procedure of passing a special magnet over the device and doesn’t involve any surgery. I believe that a pace maker (as opposed to an ICD) is a total non-issue at the end-of-life. It continues to help the heart beat but does not extend the dying process beyond the outcome of the underlying disease. Most heart patients (me included) want to have cardiac functions to continue “normally” until they stop. This is a comfort issue rather than a prolonging of suffering one.
This is something that I had never considered until now. Good to know!
Terrific essay — personal, informative, solution-oriented. I was close to a couple who recently went through the terrible experience of painful shocks at end of life. The dying heart patient (dying of cancer) said that he felt like he was being “kicked in the chest by a horse” and this was from a very stalwart fellow. His wife suffered watching his pain helplessly. Fortunately, he was in a hospice where the philosophy and practice is to “keep the patient comfortable” and gave the care-giver and her husband sufficient morphine to do so. He ultimately had the peaceful death he begged for, but there were too many days of periodic shocks before then.
After that experience I am very grateful to have the information in your writing. to share with others who might be interested, and I will make myself as informed as possible about local options and my doctors’ attitudes.
I also was a member of the hemlock society, Supported assisted suicide, and was applauded by the city club members when I asked Oregon Medical Society’s president who opposed the Death with Dignity Act on the ballot that if he didn’t want to help us, would he just get out of the way.
Now I cannot get enough caregivers, do not qualify for a DwD, and still don’t know how to get the equipment to end my life, but it would be worth everything I have.
Thank God for (Saint) Dr. Kevorkian and FEN’s existence. Please help if possible 🙏.