I know almost nothing about pacemakers.
But the “almost” is the key reason to dip the big toe of my thoughts into the ocean of treatments, decisions, consequences, and patient care options related to hospice.
Pacemakers, or Cardiovascular Implantable Electronic Devices (CIEDs), help keep you alive.
They may also prevent you from dying.
The first pacemaker was implanted in 1956. It was the literal dawn of a new heart care era. Sixty years later CIEDs are commonplace, with as many as 100,000 patients annually receiving one. The devices are comparatively small, safe, operate with batteries spanning years, and allow people to:
- Blow out more birthday candles
- Hug grandchildren
- Create and “conquer” a bucket list
- Walk on the beach with your beloved . . .
Near the start of my ministry—the 1970s—I’d visit church members needing a pacemaker. Going to a hospital for any surgery was scary! But soon, they’d gone from troubled health to a resurgence of life because of a silent, steady device nestled near their heart. Though an established “procedure” during my earliest hospital visits, it still seemed stunning. In her seventh decade, my mother-in-law’s doctors recommended implanting a CIED. She didn’t hesitate. Now in her 80s, the half-dollar sized device still assists her heart.
So, with my church and family history, I’m a cheerleader for pacemakers.
However . . .
One of the key questions to ask your doctors is whether or not the device can be easily “switched” off . . . in particular if the CIED has a defibrillator. Some do. Some don’t. The added feature of a defibrillator means the heart can be “shocked” to return to its normal rhythm. This is good! Except when the “good” mingles with the “not so good.” A pacemaker/defibrillator may keep a heart beating while dementia destroys a mind, while cancer ruins a body, or while COPD compromises lungs and the respiratory system.
As a hospice patient able to determine options and choices, do you want to keep your heart steadily beating while a non-heart-related disease profoundly impacts your quality of life?
If you have a terminal illness, but can no longer make decisions, do loved ones know what you’d prefer to do with a pacemaker that has kept you alive for some of your best years? Especially when the pacemaker may continue to keep you alive during some of the worst months of your life?
No one likes to ask these questions.
No one likes to answer these questions.
In a 2010 New York Times article, Katy Butler wrote,
One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.
The article led to “Knocking On Heaven’s Door,” her 2013 book about her parents’ relentless, all-consuming health concerns. Butler’s quest to learn about, and potentially stop, her father’s CIED is a modern medical parable of frustration. Though a book I recommend, it is not an easy read.
When Butler sought to help her parents with literal heart-wrenching decisions at the beginnings of the twenty-first century, doctors and patients had few guidelines for CIEDs and end-of-life care. Cardiologists could comfortably explain the device’s benefits, but were often reluctant to discuss—or sometimes even consider—turning one off. Patients and families rightly rejoiced in the pacemaker’s simplicity and durability, but never considered it might become an obstacle to quality of life at the end of life.
Doctors and patients also wondered and worried about . . .
- Was turning off a pacemaker represent “giving up” on a loved one and thus adding guilt to the survivors?
- Would stopping a pacemaker mean patients “committed suicide” or that doctors were orchestrating euthanasia?
Finally, in 2010, the Heart Rhythm Society (such a sweet-sounding name for a serious group of experts) crafted guidelines for ending the use of a pacemaker. These include:
- A patient with decision-making capacity has the legal right to refuse or request the withdrawal of any medical treatment or intervention, regardless of whether s/he is terminally ill, and regardless of whether the treatment prolongs life and its withdrawal results in death.
- When a patient lacks capacity, his/her legally-defined surrogate decision-maker has the same right to refuse or request the withdrawal of treatment as the patient would have if the patient had decision-making capacity.
- Ethically, CIED deactivation is neither physician-assisted suicide nor euthanasia. When carrying out a patient’s request for withdrawal of a life-sustaining treatment that a patient perceives as unwanted (including CIED therapies), the clinician’s intent is to discontinue the unwanted treatment and allow the patient to die naturally of the underlying disease – not to terminate the patient’s life.
I urge you to read more about pacemakers.
I am not an expert, and truly appreciate the many years, and many benefits, pacemakers provide for loved ones and their families. But asking about eventually “stopping” some or all of a pacemaker’s functions may be an important part of the earliest consultations with a physician.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by