Stories about end of life situations I encountered during a 32 year practice in Pulmonary/Critical Care Medicine. I try to point out the ethical issues, stresses, successes and failures. There are literature citations but this is a personal, hopefully educational exercise. Please comment!
Sunday, July 29, 2018
Saying “Turn it off” after a pacemaker or implanted defibrillator is in place
Ed note: With technology it’s often easier to say “yes” rather than “no” – or worse, saying “stop” after you said “yes.” As an ethics committee consultant, I was asked to see a dying patient on hospice who wanted his pacemaker turned off. His cardiologist refused saying, “I can’t be involved in killing people.” But the ethics committee felt that the patient had a right to refuse further treatment with this implanted device. Eventually, the manufacturer helped supervise our staff in turning the pacemaker off after considerable turmoil about patient autonomy. Another issue is the implantable defibrillator – essentially a built in AED to shock your heart when a lethal arrhythmia occurs. The following article shows how hard it can be for a doctor to deal with the patient who wants “everything done” even if it may give a more uncomfortable death.
From the NYT: “Like most patients, mine wanted to live as long as possible. So when I brought up the option of a small implantable defibrillator for his failing heart, he immediately said yes. The device would be inserted in his chest to monitor his heartbeat and apply an electrical shock if the rhythm turned into something dangerous. It was like the paddles in the emergency room, I told him, but it would always be inside him.
In truth I wasn’t sure if a defibrillator was really such a good idea. My patient was near the end of his life. He might live longer than a year, but certainly no more than five. Patients with heart failure mostly die in one of two ways: either from a sudden, “lights-out” arrhythmia that stops the heart, or from insidious pump failure, in which the heart increasingly fails to meet the metabolic demands of the body. The former, which the defibrillator would help prevent, is quick and relatively painless. The latter, which the defibrillator would make more likely, is protracted and physically agonizing.
When the time came, wouldn’t it be better for my patient to die suddenly than to struggle for breath as congestive heart failure filled his lungs with fluid?
It was a difficult thing to bring up with my patient — how he wanted to die — in part because his death wasn’t imminent. But with the rise of technologies like implantable defibrillators, this is a subject with which doctors and patients will increasingly have to grapple: not the inevitability of death, but the manner of one’s demise.
Sudden cardiac death has always been something of a paradox. It is at once the most desirable way to die and the most feared. Abrupt life-threatening arrhythmias are a leading cause of mortality in the United States. Approximately 350,000 Americans experience them every year, and 90 percent of the victims die before or soon after they get to a hospital.
My own grandfather was a victim of a sudden fatal arrhythmia on the morning after his 83rd birthday. He woke up complaining of abdominal pain, which he attributed to an excess of food and Scotch the night before. A few minutes later, he emitted a loud groan and went unconscious. Just like that, he was gone. He almost certainly had a massive heart attack, but the heart attack wasn’t what killed him; it was the ensuing arrhythmia, which prevented his heart from sustaining blood flow and life. My mother always said she was sad that he died so suddenly. But she was thankful, too.
Sudden deaths like my grandfather’s may become less common. In 2015, about 160,000 defibrillators were implanted in Americans, more than double the number from the decade prior. The population of patients who are eligible for an implantable defibrillator has expanded drastically, too: You used to have to be a survivor of cardiac arrest to be eligible; now the eligible population includes those who have merely an increased risk of sudden death. In America today, if everyone who qualified for a defibrillator were to get one, the costs could reach billions of dollars.
But cost, even with our country’s skyrocketing health care expenditures, is not the main issue. The main issue, in my view, is that defibrillators may send the dying process down a long and winding path that it might not otherwise have taken. No one wants to die prematurely, but when it’s their time, most people want to go quickly and painlessly. Defibrillators can prevent this from happening. They help prevent sudden death, to be sure. But they also can take away the sudden-death option.
Of course, defibrillators offer many benefits. They are nearly foolproof and are highly effective. Studies have shown that they prolong life in a significant number of cardiac patients. The procedure to implant them is safe. And defibrillators can, in theory, be compatible with a quick death: When a patient’s condition spirals downward, the patient can choose to deactivate the device.
However, in my experience, few patients ever deactivate the device. We doctors rarely inform them of this option, and even when we do, patients (and their families) are often reluctant to make a choice that may hasten death.
I discussed these issues with my patient. I explained that a defibrillator might give him a slightly longer life, but that it might also take away what he wanted from death. He listened to the pros and cons. In the end, he said he wanted to proceed with the defibrillator. We scheduled him to get his device the following week.
When he was lying on the surgical table, I couldn’t help thinking of another patient of mine who had received a series of painful shocks from her defibrillator when she was in her late 60s. She didn’t want to turn off her device because she believed that it could give her another six months or a year of life. However, she told me, “I say to the Lord, if it’s my time, let me go in my sleep, please.”
Sandeep Jauhar is a cardiologist, a contributing opinion writer and the author of the forthcoming book “Heart: A History.”