Start the difficult conversation with ICD patients

There was a very important article written in the New York Times recently. It highlighted a common medical scenario in my world—the defibrillator (ICD) world.

I am going to talk about ICDs here, but the big picture inherent in this story illustrates the important issue of how best to apply invasive therapy to elderly and sicker patients.

The Times piece delved into medical decision-making when patients present with battery depletion of their defibrillator. The battery longevity of these devices ranges about 5 years. The default among many heart doctors is to assume that patients still need or want their ICD. I can say from personal experience that this is an incorrect assumption. There are other options. The device can be deactivated and left in place, or it can be exchanged for a non-shocking pacemaker.

The Times author, Paula Span, smartly featured an interview with Harvard doctor, Daniel Kramer, who has been a strong and sensible voice in the electrophysiology world. He was a great person to interview for the story because he dares question the status quo. I loved the piece, but was surprised by the vitriol of some of the commenters.

Harvard doctors generally do not need mere medical bloggers to come to their support. But after reading the comments, which I am afraid, may be representative of many, I feel compelled to stand up for Dr. Kramer. Though we have never met, I am a huge fan of his work.

As an ICD implanter, I have seen both the good and bad of these potentially lifesaving devices. Like most invasive treatments in Medicine, the good can be very good and the bad, really horrific. One particular ICD patient comes to my mind. A man brave and strong enough to storm the beaches of Normandy in WWII was transformed to a scared and depressed old man in the years after his defibrillator misfired 72 times. It was awful. These stories stick with you.

Readers need to know that this Times piece recapped an important article that Dr. Kramer recently published in the NEJM. In it, he and co-workers spoke frankly to the medical community about ICD generator changes. The excellent article garnered little fanfare with heart doctors.

Going against strong headwinds in his own community of heart specialists, Dr. Kramer emphasizes three important issues that come about when older patients with ICDs face battery depletion.

First, he asks heart doctors to re-evaluate whether the patient still benefits from the ICD. Perhaps, the original heart problem has improved?

Second, he points out that a patient’s experience living with the device may have changed their mind about keeping it active. Perhaps, a patient with inappropriate shocks no longer wants the device?

Third, since the original implant, a patient may have changed their goals of care. Many patients no longer desire life-sustaining shocks—for whatever reason. It’s their choice; but they aren’t often asked.

You may wonder why such obviousness isn’t the norm?

It’s because our healthcare system imparts significant barriers. Dr. Kramer nicely explains two important hurdles. One is that healthcare in the US is fragmented, especially for the infirmed and elderly. Patients may have many doctors, and care is often not well-coordinated. This means, an installer, a proceduralist like me, is left discussing end-of-life care with patients immediately before ICD surgery. That’s not good. I am married to a hospice doctor, so I sort of know how to manage these conversations. This is not the norm for procedure-oriented heart doctors. The other barrier to getting the elderly the best care is our system’s misguided incentives. In our current fee-for-service system, I am rewarded for doing, not discussing not doing. In fact, not doing stuff is very risky—both legally and professionally (ie. loss of referrals.)

Finally, Dr. Kramer and his colleagues call for heart doctors to take the lead in starting “the conversation” with ICD patients. He wants us to share the decision of using invasive, potentially dangerous or ineffective care with the patient. He also asks the scientific community to study the outcomes of patients who undergo elective ICD generator changes. These should not be controversial recommendations.

It’s a huge mistake to equate this kind of smart thinking to rationing. Aligning evidence-based care, especially potentially burdensome surgery in elderly patients, with the goals of the patient is not rationing.  It’s moral, ethical and obvious.

John Mandrola is a cardiologist who blogs at Dr John M.

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  • http://twitter.com/WindyCityMed Michael Mank

    Sounds like another post making reference to and promoting shared-decision making. I do not see a problem with this practice and am curious as to why such an article in the NEJM and/or Times would produce such criticism.

  • mjdayer

    Hi

    I agree entirely with the post and the NEJM article. We do need to think before blindly replacing devices. There was in interesting session at HR-UK last year focusing on this topic. In practice though I have found it much harder. Many still want their devices and have become psychologically dependent upon them.

    Mark Dayer

  • StephenModesto

    …Thank you for the shared perspective…Yes, the issue is indeed one of starting the `conversation’. Themes related to end of life issues are axiomated as a distinctly human process, yet for all the technological professionalism of the medical health care system, these issues are deferred to another link in the chain of command. As one of commenters pointed out, psychological dependence on the continuation of `care’ at any price is not only a driving unresolved anxiety of the patient, but is also a significant shadow of the family standing behind the patient. Ironically, saying `nothing’ seems to be the cruelest form of extended compassion so nobody `gets upset’ with having to think about thoughts they do not like to think about.

  • Liverpoolgirl

    My father in law dying from years of smoking, congestive heart failure and cardiomyopathy was told by his cardiologist that he needed an AICD because he could be dead before he hit the floor. He had been in and out of the hospital, rushed to the ER in the middle of the night. He was old beyond his years, had no appetite, was chronically short of breath and looking very end stage. I tried to tell him that an arrhythmia might be a gift rather than endure a long drawn out death struggling to breathe. A veteran of WWII he did what his doctor wanted and six weeks later died at home with hospice in heart failure and his AICD attempting to shock him back to life. I didn’t have the heart to tell his wife that the twitching was the defibrillator firing so I told her the that sometimes happened when people die. I know this isn’t about battery life but about the recurrent issue: Just because we can doesn’t mean we should.