by Erin Marcus, MD
Every once in a while, there’s a magazine piece that so encapsulates the key moral issues — and irrationality — of 21st Century medicine that it warrants designation as mandatory reading for anyone who interacts with patients. Atul Gawande has written some of these; so too has Slate medical columnist, Darshak Sangavi.
The latest entry on the required reading list is Katy Butler’s “My Father’s Broken Heart,” which appeared in The New York Times Magazine on June 20th. Butler, who teaches memoir writing in California, describes the seven-year deterioration of her father Jeffrey, a retired college professor. Jeffrey Butler was active and intellectually engaged well into his 70′s. At 79, he suffered a stroke that left him with significant problems speaking, walking and putting on his clothes. Despite his initial determination to overcome the stroke’s aftereffects, he deteriorated, telling his wife, “I don’t know who I am anymore.”
A year after the stroke, Jeffrey Butler developed a painful intestinal hernia that needed to be repaired. As is routine for complicated elderly patients, the surgeon requested a preoperative cardiology clearance. The cardiologist, in turn, refused to deem him stable for surgery unless he received a pacemaker for his slow heart rhythm (which Butler doesn’t describe in detail). This wasn’t the first time the specialist had advised him to get a pacemaker; a year earlier, just prior to the stroke, it had also been recommended, and Jeffrey Butler had refused. But this time, his wife and healthcare proxy, Valerie — who was overwhelmed, fatigued and, most likely, reluctant to impede an urgent procedure that would fix her husband’s pain, consented. The couple’s primary doctor, who knew them well and who had told them a year earlier that he considered a pacemaker “overtreatment,” found out about the decision after the fact, by fax.
The pacemaker insertion and subsequent hernia repair, were, in the short-term, seemingly successful. Otherwise, though, Jeffrey Butler continued to worsen, suffering additional strokes and becoming blind, incontinent, and senile, and developing the personality changes often seen with dementia. Katy Butler painstakingly describes the devastating effect of all this on her mother, who described her life as “in ruins.” Four years after the pacemaker placement, she asked his cardiologist to turn off the device, but he refused, describing it, according to Katy Butler, as something akin to murder. And so, the family’s hellacious existence continued, until Jeffrey Butler died uncomfortably of pneumonia in the hospice wing of a local hospital, eight years after his initial stroke. The cause of his expiration was respiratory failure; his pacemaker continued to work perfectly.
Valerie Butler died a year later, after resolutely refusing open-heart surgery for two leaky valves. At the beginning of the story, she was a vigorous woman who practiced yoga and calligraphy. By the end, she was mentally sharp but physically frail, and had lost her confidence in doctors as healers looking out for their patients’ best interests, instead viewing them, in the words of Katy Butler, as “skilled technicians with their own agendas.”
As a cog in the US medical machine, it’s not difficult for me to envision how all this happened. Taken individually, the initial decisions in Jeffrey Butler’s care don’t seem particularly unreasonable. While Butler doesn’t provide all the details, a painful intestinal hernia is something that needs surgical repair, and, if the bowel becomes trapped and deprived of oxygen, life-threatening. It’s totally understandable that the surgeon would want an elderly patient with known vascular disease to be cleared by a cardiologist before undergoing anesthesia, which can directly affect the heart and blood vessels. Implanting a permanent pacemaker is more debatable, but not totally out of line; even though Jeffrey Butler was significantly impaired after his first stroke, he was still, at that point, able to communicate, walk alone, and participate in water aerobics. It’s therefore not difficult to comprehend the rationale of the consulting cardiologist — who most likely wasn’t familiar with the family’s private pain — in recommending the device.
Unlike many people in this situation, the Butlers were lucky to have a thoughtful primary care doctor, with whom they shared a close personal bond. But as is true too often, the subspecialists left him out of the discussion. Even if they had included him, Katy Butler points out, he would have been “effectively penalized” financially for taking the time to have a lengthy discussion with her parents and coordinate a plan with the surgeon and heart specialist. (Butler also notes that the original health reform bill in the US House did include reasonable payment for such discussions, which were depicted as “death panels” by the bill’s opponents — thank you, Sarah Palin).
Butler points the finger for our fix-it-fast, think-about-the-big-picture-later medical system at the medical-device and specialty lobbies in Washington and the distorted payment system their efforts have spawned, in which doctors get rewarded to do procedures instead of taking the time to communicate effectively with their patients. Despite the reimbursement system’s role in creating this irrational monster, our country’s technology-happy mentality is also to blame. Intertwined with all this is the discomfort many of us have with the end of life, in which death is viewed as a failure. While medical schools have added curricula on this topic, it’s not exactly the focus of their overall educational program.
Doctors aren’t the only ones uncomfortable with death. It’s not uncommon for family members of critically ill patients to push for futile, aggressive care, even if the medical team feels the treatment is simply prolonging the patient’s demise. One friend of mine quit critical care medicine after being forced by family members to keep their relative with end-stage Alzheimer’s on a ventilator. “That’s not why I went into medicine,” she said.
Recently, I faced a situation similar to that of Jeffrey Butler’s doctors. My residents admitted a patient with dementia who briefly passed out and was found to have an intermittent heart block. As is common with many of our patients, he had no primary care physician. Of course, our team called the heart rhythm specialists right away, and they concluded that he was, indeed, a candidate for a pacemaker. But when they called the patient’s brother to get consent, he refused. At the time, I didn’t think much of it; we documented the refusal in the chart, adjusted the patient’s medications, and sent him back to his assisted living facility with a follow-up appointment. After reading Butler’s article, I can’t think of a better solution.
Erin Marcus is an internal medicine physician and writes at New America Media. This article originally appeared in The Huffington Post.