by Carolyn Thomas ♥ Heart Sisters (on Blue Sky)
Here’s how I defined implantable cardioverter defibrillators (ICD) in my patient-friendly, jargon-free glossary: small battery-operated electronic device that’s surgically inserted into the chest to treat life-threatening heart rhythm problems. An implanted ICD is almost like having a tiny Emergency Department at the ready, right inside your own chest, capable of delivering a shock strong enough to restore a struggling heart’s normal rhythm, thus helping to prevent sudden cardiac arrest.
But what happens when the ICD patient is not dying from a heart rhythm problem – but from a terminal medical condition?
James Russo, who researches ICDs at New York’s Staten Island University Hospital, explained why this is a profoundly complicated issue: 1
“To restore normal heart rhythm, the implanted ICD in the patient’s chest delivers a high-energy, painful electrical shock. But because the device is so effective in treating sudden cardiac arrest, people with ICDs are more likely to die from other causes. Their deaths can be needlessly painful, however, if the ICD continues to deliver shocks during the active phase of dying. Although device deactivation (turning off the ICD’s ability to deliver shocks) is an option, doctor-patient advance planning discussions rarely include explaining the deactivation of the patient’s ICD.”
Turning off the shock feature of an ICD is a decision that’s not limited only to end-of-life care, by the way. An ICD implanted in a pregnant woman about to give birth, for example, can be deactivated during labour when there’s a risk of inappropriate shocks during the stress of childbirth due to uterine contractions or high maternal heart rate during delivery. 2
But in end-of-life care, inadequate advance planning conversations between doctors and patients can result in dreadful consequences down the road. A 2022 study published in the European Journal of Cardiac Nursing, for example, identified four dangerously false assumptions that uninformed heart patients believe about their ICDs. Basically, these patients cannot make an informed decision if they (and their families) have not yet been informed. 3
For example:
♥ Nearly half of heart patients surveyed mistakenly believed that turning off the shock function of their ICD would stop their heart.
♥ Almost 70 per cent were unaware that disabling their ICD does NOT require surgery.
♥ Over 90 per cent said no doctor had ever discussed the option of ICD deactivation with them.
♥ About 50 per cent of patients with implanted ICDs said that the reason they had not discussed deactivating their device was because they felt “reluctant to discuss this topic with their doctor.”
But seven years before those dangerous assumptions were published, the Heart Rhythm Society had weighed in with a series of important myth-busting facts about turning off an ICD, including the following truths:
♥ Turning off an ICD is not difficult or time-consuming.
♥ It is not a surgical operation and does not cause any discomfort.
♥ The ICD is turned off using the same programmer that your doctors use to talk to your ICD.
♥ Although every ICD has a built-in pacemaker, the shock action of the ICD can be turned off while the pacemaker function remains on.
♥ Turning off the ICD will not cause immediate death.
♥ Turning off the ICD will not be painful, nor will a patient’s death be more painful if it is turned off.
♥ Turning off the ICD will mean that the device will not prevent sudden cardiac death in the event of a dangerously rapid heart rhythm
♥ It is not legally or morally wrong to stop any medical treatment that no longer serves you or your loved ones.
♥ Turning off the ICD is not suicide or killing someone. It simply means that when the symptoms of terminal illnesses can no longer be managed, you are allowing nature to take its course.
Yale University cardiologist Dr. Rachel Lampert, who has been studying ICD shocks in end-of-life care for over 20 years, included some disturbing information in her 2013 editorial in the cardiology journal, Circulation.4
She cited palliative care research with titles like: “Death and defibrillation: a shocking experience” or “And it can go on and on and on.” Dying patients described painful ICD shocks with words like “a punch in the chest,” “being kicked by a mule,” or “putting a finger in a light socket”. It’s hard to even imagine a worse way to die – for both the heart patient and the loved ones gathered nearby to witness that person’s death.
Dr. Lampert added:
“Even among patients with a Do-Not-Resuscitate order (just over half of people studied), 65 per cent had their ICDs programmed ‘ON’ at 24 hours preceding death, and 51 per cent of that group were still programmed ‘ON’ just one hour before death.”
I suspect that this is not what Mayo Clinic’s Dr. Victor Montori would ever call “careful and kind care“. This is more like end-of-life abuse.
Dr. Montori’s description of what he calls the “industrialization of health care” also fits this topic of ICD deactivation for patients who are imminently dying:
“Industrialization of health care overwhelms professionals and patients, is cruel to them, and has rendered health care as we know it to be humanly unsustainable.”
And as Dr. Lampert concluded in her editorial:
“The true frequency of ICD shocks in dying patients has likely been underestimated in studies, because neither family nor healthcare providers may have been aware of all shocks that patients received, and in many cases, the only individuals who could have provided the accurate answer may have carried it with them to the grave.”
♥
1. Russo JE. “Original research: deactivation of ICDs at the end of life: a systematic review of clinical practices and provider and patient attitudes.” Am J Nurs. Oct. 2011
2. et al. Caring for the pregnant woman with an inherited arrhythmia syndrome.” Heart Rhythm. 2020; 17: 341–348.
3. Lee KS, et al. “Patients’ openness to discussing implantable cardioverter defibrillator deactivation at end of life: a cross-sectional study.” Eur J Cardiovasc Nurs. 2022 Oct 14;21(7):687-693. doi: 10.1093/eurjcn/zvab130. PMID: 35018427.
4. Rachel Lampert, “Implantable cardioverter defibrillator shocks in dying patients: disturbing data from beyond the grave.” Circulation. Volume 129, November 2013.
5. Kinch Westerdahl et al. “Implantable cardioverter-defibrillator therapy before death: high risk for painful shocks at end of life.” Circulation. 2014;129:422–429.
♥
Q: If you live with an implanted defibrillator, have you had an advance care planning conversation with your doctor and your family members?
See also:
Coping with your partner’s ICD and heart disease
What heart patients want ICD makers to know
Doug Rachac’s YouTube channel: Doug worked for the cardiac device manufacturer Medtronic for 14 years so already had impressive professional knowledge about these devices -even before he became a defibrillator patient himself at age 40. Doug has been my go-to expert on ICDs and pacemakers for several years.
♥
NOTE FROM CAROLYN: You’ll find much more about informed medical decision-making in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). You can ask for it at your library or favourite bookshop (please support your local independent booksellers!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and use their code HTWN to save 30% off the list price when you order).
Heart Sisters 
Carolyn, I appreciate your speaking out on this critically important topic. As a Hospice Clinical Social Worker, I recall being horrified when I visited a relatively young adult following his admission to our hospice team’s care and discovered he still had an activated ICD.
He was very compromised physically and had an expected life expectancy of a few weeks at best. He and his family had assumed that his ICD would not activate if he died a natural death at home, having never received appropriate education about its use, much less his end of life stage.
My team and I worked mightily with his doctors to ensure that his ICD was deactivated, once the client and his family received adequate education from our team, and he was able to experience a peaceful death at his home according to his wishes.
Fast forward a number of years, when I was a primary advocate for my father–in his 80’s and suffering from years of cardiac disease.
He also had an activated ICD and was needful of hospice care. I arranged to be with him and my mother at the cardiac clinic to ensure that his ICD was deactivated. I was stunned to meet resistance from several staff who questioned whether he was “giving up” and if he “really understood the consequences” of having his ICD deactivated. He was flummoxed and very frightened about the prospect of dying in pain.
I asked the staff if they “really understood the consequences” of someone dying with an activated ICD in place and strongly encouraged them to frame his “giving up” as what it truly was–acceptance that he was mortal and in the last stage of his life. His ICD was deactivated and within a matter of weeks he died peacefully and comfortably in a hospice house, with my mother and me in loving presence.
In both situations, I think not only of the deaths this young man and my elderly father would likely have experienced had their ICD’s been activated but also of the experiences that the families–and caring staff–would have experienced had they witnessed a not very peaceful death.
I’ve been receiving your posts for about 10 years now, and I am grateful for all the dedication you have poured into your efforts to educate and support those of us living with heart disease.
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Hello Bren and thanks so much for your kind words – and also for sharing those two compelling end-of-life stories of your young patient and your Dad. Both stories illustrate perfectly how lucky those two patients were to have you in their corner – although it should NOT be necessary to have a hospice clinical social worker at the bedside of every dying patient! You taught valuable information not only to the patients and their families, but to every doctor or nurse who was also witnessing your input.
It is absolutely shocking (pardon that pun) to see how uninformed so many hospital staff can be during such an important phase of a patient’s life. The image of these professionals being “resistant” to deactivating your Dad’s ICD is very disturbing to me. Where were the cardiologists who implanted those ICDs? And where was the patient education that should have been part of every written discharge plan and every cardiology follow-up visit? In the Russo research, he actually points at “the healthcare providers who report personal discomfort with the subject and inadequate knowledge of cardiac device function” as being complicit in this horror.
“INADEQUATE KNOWLEDGE OF CARDIAC DEVICE FUNCTION?!?!?” How is that even possible?
After what I learned while writing this article, I can indeed imagine the horrific deaths of both patients you describe if their ICDs had not been turned off in time. Some of the research findings I found in published journal papers were so appalling that I honestly wondered if criminal malpractice charges were laid at the time due to the needless suffering the poor dying patients (and their family members who were forced to witness (e.g. severe electrical shocks that went “on and on and on and on…” ) clearly must have endured because of that professional ignorance. It makes me furious. . .
Thank you again, Bren – and bless you for the work you did for all of your end-of-life patients and their loved ones. . . ❤️
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Re the “industrialization” of health care: great and very telling wording for how in many ways health care has become less kind and more impersonal.
Here in the USA, there is unfortunately a monetary reason doctors are urged to have their patients sign a “living will” or a DNR( do not resuscitate) – The financial remuneration of the CEO of the hospital.
A certain percentage of the large salary of the CEO is docked for every ICD death that is not moved to hospice care (DNR) first.
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Hello Mary – it makes sense, weirdly, in a for-profit healthcare system that is essentially run by the for-profit insurance industry – that executives (whether CEOs or clinicians) are rewarded for making specific mandated decisions. Money talks. The very definition of “industrialized medicine”, as Dr. Montori at Mayo describes it.
Take care. . . ❤️
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ICD
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Carolyn, thank you so much for this post!
If the several ablations I’ve had don’t ultimately solve my heart rate problems, I have a feeling the next step will be an ICD, and this subject is one that had me wondering. You’ve clarified things beautifully.
Blessings,
Gloria
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Hello Gloria – you’re so welcome! I’m glad you found reading about these studies useful (even if a bit frightening!)
Still, I believe that one of the best things heart patients (and our loved ones) can do is to become what I call the “world experts” in our own diagnoses – including both short- and long-term potential outcomes.
For example, if my cardiologist had mentioned the possible need for an ICD implanted in my chest (or the likelihood of having one implanted at some point way off in the future) and I was reading this particular article, the first thing I would do after learning about those research findings is to talk with my doctor for a detailed chat about ‘what happens one day in the future if I’m facing a terminal diagnosis and wish to deactivate my ICD?’
A possible side benefit of this chat would be learning pretty quickly how your doctor and his/her colleagues feel about deactivating an ICD (some physicians have refused to do this procedure for personal reasons – even though, as the Heart Rhythm Society itself reminds their members, it is neither legally nor morally wrong to stop ANY medical treatment upon the patient’s request!)
Knowledge is power! An implantable defibrillator is a good example of a life-saving cardiac treatment that can work miracles when we need it, but can also be turned off if the patient and family decide to do so before it’s too late.
Take care – I hope your next ablation (if you need yet another one!) will be uneventful and helpful.❤️
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