Looking inward. . . . Do electrophysiologists notice what they do?

                 It's not just important what we clinically do to our patients, it's important to
                understand how we can also help them cope with what we do to them.
                               —Dr Michael Gewitz, past chair of the AHA Council on
                                  Cardiovascular Disease in the Young

This sentence, from a recent pediatric ICD report, got me thinking about a topic that comes up frequently in the practice of electrophysiology—the burden of our therapy. It's something I think about more and more. Thoughts like: Do no harm. Put yourself in the patient's shoes.

You are talking with a patient in the office. She doesn't have an ICD. One way to look at her is at risk for sudden death. Another is alive and well. Same with the patient with symptomatic AF: he is impaired yes, but also, alive, taking food and water and ambulating under his own power.

That's the thing about electrophysiology: The diseases we treat, atrial fibrillation, congestive heart failure exacerbated by left bundle branch block, and ischemic cardiomyopathy, for instance, are rarely life-threatening today or tomorrow. They are serious maladies, no doubt, but there's time to think, to discuss, and to practice patient-centered care. And this constant too: heart-rhythm disorders come in many different shapes and sizes. Spreadsheets and protocols don't really help us. We are constantly tailoring treatment—hopefully to the patients' goals of care, not ours.

Then there are the tools of the trade. Oh, those tools! At our disposal is a vast array of technological fury. EP procedures and devices, which come supported by rosy reports from well-controlled trials and upbeat guideline statements, are not for the meek of heart. Although spectacular when successful (fortunately much of the time), our interventions come with a hefty dose of burden. Ask the patient with ICD shocks from a lead recall, or an AF patient on their fourth ablation about burden. Ask the doctor who does lead extractions how well they sleep in the weeks after a tragic outcome.

Burden.

What's wrong with me? Snap out of it, John.

Again, what did you call the patient with asymptomatic cardiomyopathy who does not have an ICD? Did you say, not infected with MRSA?

Perhaps it is my wariness of unbridled enthusiasm that pointed my attention to this pediatric study on post–cardiac device quality of life. It seems pediatricians keep a close eye on their patients' quality of life after devices. Good for them. They sound an important message; one that is relevant for all doctors who wield burdensome treatments.

Let's admit it. As humans—not machines—we imperfectly implant occasionally flawed cardiac devices. As optimists, heart-rhythm doctors rarely talk about (or even notice) the burden of our treatment. More honesty: How many ICD patients understand the risk and pain of inappropriate shocks, their impaired prognosis after an appropriate shock, the higher complication rate of generator changes, the impact of device recalls, and the disaster of device infections? How many primary-prevention patients know that the ICD won't make them feel better? Or this ultimate truth for all patients with an ICD: that they will in fact die someday, and the ICD might change their mode of death from peaceful and sudden to prolonged.

I know it's hard to see the water in which one swims, but isn't it possible that electrophysiologists might benefit from looking?

I found this 2002 THO coverage of a NY Times story on a patient who pleaded with her doctors to turn her device off. Quoted in the inward-looking piece, levelheaded electrophysiologist Dr Leslie Saxon said that she found discussions about ICD problems and what to do at the end of life to be morbid. "We are going to get you well now. . . . I'll deal with the five-year thing when it comes up," she said.

Okay. I get it. Count me in for being upbeat. Ten years later, though, after Sprint Fidelis, Riata/Durata, and the sobering reality that--in the real world--patients with significant comorbidities often get burdensome devices that don't change overall outcomes, this practice of morbid avoidance might warrant another look.

Even the pediatric researchers who reported that kids with devices had lower quality-of-life (QoL) measures had trouble saying it. In their conclusions, they say, "QoL is significantly affected by the presence of cardiac rhythm devices."

My friends, in that study, devices did not affect QoL, they lowered it.

See what I mean?

Be sure; I'm not arguing against cardiac devices, especially in kids. And . . . electrophysiologists have to be optimists. There's no way to do this job and dwell on all the bad stuff that could happen. Our skills and technology do great things to improve the lives of many.

What I am saying is that the first step to helping our patients choose wisely is to acknowledge the limitations and burdens of what we do. We don't have to be morbid, just realistic and open-minded.

When I first started practice many years ago, I felt that the hardest part of the job was not so much implanting the device or burning the arrhythmia focus but deciding when to and when not to. It's way worse now—because we have more tools and our patients are older and sicker. And I have had more time to notice what can happen with and without treatment.

With the utmost humility and a strong collegial respect, may I suggest that electrophysiologists lead the way in looking more closely at the burdens of what we do? That we notice. And of course, of all doctors, electrophysiologists should not consider discussions about death to be morbid. After all, as Forest's mom famously said: "Dying is part of living."

Let's close with optimism.

I was tired and so ready to be done. He was my last patient of the day. He greeted me with a firm handshake and that grateful look—always a welcome gift. I opened the chart and my mind recalled that life-saving shock. His only one; it was five years ago. I looked up from the chart and said: "I'm glad we put that device in."

He grinned.

His wife whispered: "Me too."

JMM

Your comments

	Looking inward. . . . Do electrophysiologists notice what they do?
	# 1 of 6	December 21, 2012 10:44 (EST)
	Francis  Kempf	To few like you Great post - all too often we try to delineate and implement "what we can do to the patient" for a particular problem. In my opinion, we should determine "what we SHOULD do FOR the patient". The big picture should never be ignored. Author's disclosure (Dec 21, 2012) I have no relevant disclosures to make in connection with this topic.
	# 2 of 6	December 21, 2012 11:05 (EST)
	John Deaton	Good thoughts Very well thought-out view of the subject. Author's disclosure (Dec 21, 2012) I have no relevant disclosures to make in connection with this topic.
	# 3 of 6	December 30, 2012 03:13 (EST)
	D Hackam	from a buddhist perspective This piece echos many thoughts from buddhism as I understand that philosophy. Life is impermanent; we begin to die the very day we are born; it is inevitable that we will die; it is inevitable that we will suffer; it is inevitable that we will have to cope with pain. You are a wise MD and know all this. Ignoring death, rather than contemplating it, only makes the situation worse for family and patients and physicians when death arrives - which is an event we can't predict as to its timing but has 100% certainty of arrival. Having said all this, helping patients to focus on these considerations when they feel anxiety about their life being at stake, against a societal norm which refuses to discuss death or dying (hoping it will go away), is very, very touchy and difficult. You might lose referring physicians; you certainly could lose patients. Better in the long run to be honest and stop deceiving ourselves and our patients. We have nice technological fixes, but in the end, death always arrives, and again, can't be predicted as to its timing. Author's disclosure (Dec 30, 2012) I have no relevant disclosures to make in connection with this topic.
	# 4 of 6	January 1, 2013 01:22 (EST)
	michel pichon	déconnections d'une sonde de défibrillation riata Je suis heureux Mr John Mandrola d'avoir rencontré un électrophysiologiste de votre trempe qui, malgré sa réticence personnelle a déconnecté à ma demande, ma sonde riata reconnu comme externalisée, à fort potentiel de nuisances...!.préférant mourir d'un arrêt cardiaque , ou mot subite, que lardé de multiples chocs inappropriés pour au total n'être pas certain d'avoir la vie sauve!!!.par ailleurs mes deux sondes de resynchronisation n'étant pas l'enjeu de ce débat me concernant§... Je suis depuis longtemps vos messages dans votre blog , vous êtes à mes yeux un homme ,un médecin qui sait en temps utiles retirer sa blouse et parler tout simplement de sujets qui ne le sont pas Author's disclosure (Jan 1, 2013) I have no relevant disclosures to make in connection with this topic.
	# 5 of 6	January 1, 2013 08:14 (EST)
	James J. King	French to English Disconnections of a defibrillation lead RIATA I am pleased to have Mr John Mandrola met an electrophysiologist your temper, who despite his personal reluctance has disconnected my request, my probe riata recognized as outsourced to potential nuisance ...!. Preferring to die a stop cardiac or sudden word that larded multiple inappropriate shocks for a total not being sure save his life!. otherwise my two probes resynchronization is not the issue in this debate me on § ... I'm your long posts in your blog, you are in my eyes a man who knows a doctor in a timely remove (his shirt) and simply talk of subjects that are not - FDA Safety Communication: Premature Insulation Failure in Recalled Riata Implantable Cardioverter Defibrillator (ICD) Leads Manufactured by St. Jude Medical, Inc. Author's disclosure (Jan 1, 2013) I have no relevant disclosures to make in connection with this topic.
	# 6 of 6	January 2, 2013 06:22 (EST)
	David Ward	The Price of Medical Progress? I have access only to the abstract of the CircEP "pediatric devices" (pacemakers and ICDs) article which seems to give emphasis to the adverse effects of devices on quality of life (QoL) in the age group 8 to 18 years. The irony is that 20 years ago ICDs could not be implanted in small children and pacemakers were implanted epicardially necessitating frequent re-operation and complications. Advances in device and lead design and in transvenous implantation techniques have resulted in more reliable and durable systems. Many of the recipients of these devices will owe their survival to them. Patients with devices tend to have more complex congenital heart disease (CHD). Psychological support is required for all such patients not ony those with devices. A particularly stressful period is that of the transition from child to adult. It is known that this area is underserved as has been emphasised by many adult and pediatric cardiologists. Many teenagers and young adults with CHD get lost to follow-up. In fact it is likely that patients with devices will have better follow-up than those without owing to regular visits to the pacing/ICD clinic. This would seem to be the obvious place at which to monitor QoL and initiate a support program which is properly coordinated with existing support available for those young patients with CHD but without devices. Author's disclosure (Jan 2, 2013) I have no relevant disclosures to make in connection with this topic.

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