ICD decision making: Difficult conversations . . . and whose decision is it?

The call from the referring doctor usually ends with me saying, "I'll talk with him."

How do you approach the pre-ICD implant meeting? You have one, right?

Even now, I find explaining the nuances of an ICD to be very complicated. It's harder with the primary-prevention patient, who is usually living well with their heart disease. They are not expecting a heart doctor (of all people) to ask them how they want to die. Do they prefer sudden death (perhaps a little sooner), or do they wish to live as long as possible, even if it means dying of progressive organ failure? These are tricky concepts. Just mentioning death stimulates the anxiety centers. "Doc . . . are you saying I am going to die?"

I've been working for 15 years to get these conversations right. In many cases, I leave the conversation thinking that I was a weak explainer.

Perhaps I am outside the mainstream. Many of my colleagues seem to find ICD decision making more straightforward.

At least that's what this recent Archives of Internal Medicine paper suggests. Dr Daniel Matlock and colleagues, including the influential Dr Sana Al-Khatib from Duke, report the results of a cross-sectional survey sent to ACC members who are involved with ICDs. Analyzing graded questionnaire responses from 1210 physicians (12% response) that asked about the factors affecting the decision to implant a primary-prevention ICD and the doctors' feelings about ICD benefits, the researchers offered three striking findings:

• Nearly 86% of the responders thought mortality benefit from the ICD mattered a "great deal."
• Fewer than half of respondents (38%) thought patients' preferences mattered a "great deal."
• Slightly more than one in 10 (12%) respondents believed patients' preference mattered "very little" or "not at all."

The authors rightly conclude that enthusiastic adherence to guidelines may "compel physicians to adopt a beneficent or even paternalistic approach to decision making, which can take precedence over patient preferences." What's more, they also found that the doctors who felt most favorable about ICD benefits were more likely to assign less value to patient preferences.

Does this bother you—that a physician's attitude about the potential benefits of a highly invasive and potentially dangerous therapy holds greater value than does a patient's preference?

It bothers the heck out of me—on a lot of levels.

I'll start with a real story:

I have followed him through two decades. Now, only partially retired in his mid-seventies, he continues to help the less fortunate. He has lived through two acute coronary occlusions, one of which caused sustained LV injury. He's made peace with the low ejection fraction and has lived well with a diminished functional capacity.

We all have a few "special" patients. He's one of the few who has my cell-phone number, for it makes me nervous when a colleague looks after him. Not because he's so complicated or I'm more skilled; rather, it's because he does not have an ICD. More than once, I've gotten the call: "Your guy needs an ICD. He could die."

His indication for a primary-prevention ICD is so obvious that even a Medicare Recovery Audit Contractor and a Department of Justice investigator would wonder what I was thinking. On many occasions, the patient and I have talked about the ICD trials. I have explained the Kaplan-Meier curves and the numbers needed to treat in the MADIT 2 trial. My strong bias has been that he should let me put in an ICD.

His sophisticated mind understands all this, but he counters: "You know me; having a shocker that could zap me would make me more anxious than a cat on a hot tin roof. . . . I cannot live that way. . . . I have faith that the Lord will have me when He's ready."

For a couple years, I revisited this decision at each annual visit, but now we don't talk about it anymore. It took me a while to get the message.  

Patients teach you a lot. Despite making me look dumb, this man lives on, year after year. Perhaps it's the exercise, good food, and passion for helping the less fortunate that keeps him going? It surely isn't his doctor.

Let's get back to the Archives paper.

I agree with much of what  Drs Goldberger and Fagerlin wrote in an accompanying editorial. I've taken of few of their observations and meshed them with my views from the real world of ICD management.  

Failure to involve patient preferences in the ICD decision may result in the following:

Patients may have unrealistic expectations. How many times have I heard a patient say they were getting a primary-prevention ICD because it was going to make them feel better? Obviously something went wrong in that pre-ICD meeting.

Patients can be confused about the ICD. In other words, patients don't know what the heck to do. They may even refuse an ICD when it would have been highly appropriate.

Patients less active in decision-making may be less likely to adhere to other important therapies like medicine and lifestyle interventions. As I have said before, what's the point of the ICD, if the patient doesn't adhere to other health regimens?

When ICD complications occur, uninvolved patients may be less understanding. Imagine how you would feel if you were painfully shocked by the device the first time you got back on the treadmill. (It's a real story: a young man with hypertrophic cardiomyopathy who had an ICD without having his upper-rate cutoff adjusted to his active lifestyle gets beat down by shocks for sinus tachycardia.) Or this one: put yourself in the shoes of a patient with a Sprint Fidelis or Riata lead.

In the real world, the absolute benefits of ICDs are widely overestimated. Rarely does the issue of competing causes of death come up in a conversation with a patient considered for an ICD. I'm still asked and then scorned when I do not implant an ICD in a patient with ESRD or class 4 heart failure. Many studies suggest elderly patients and women with advanced heart failure may not benefit from an ICD. Do these issues get raised in the ICD discussion? And how about the poor prognostic value of shocks in heart-failure patients?

Many heart doctors harbor skewed views of death. A common cardiology mind-set—perhaps formed in fellowship days on the interventional or CHF service—holds that death equates with failure. Young doctors learn that skillful doctors can prevent their patients from dying. Maybe we don't ask the patient their views about ICDs because we don't consider that anyone in their right mind would turn down a therapy that protected them from death. Have you heard this line: "Sir . . . if you don't have the ICD, you could die." [As if they will not die with an ICD.]

The good-doctors-can-prevent-death view speaks to the reason that many of the survey responders thought shared decision making was not appropriate for ICDs. Although misguided, at least this view stems from beneficence. Heart doctors want their patients to stay alive. They just don't see the downsides of their therapy. Heart doctors don't look at ICDs and overflowing pillboxes the same way cancer doctors see chemo and radiation. Most cancer doctors tell their patients that therapy will be tough.

My take-home:

I'm still highly positive on the role of an ICD. I have seen it add good years to patients' lives. But given its modest mortality benefits, need for exquisite patient selection, and severe potential complications, patients considered for this therapy should have frank and open discussions with their physicians. Patients with an ICD should understand why they have it.

Of course, this means heart doctors (and patients) will have to enter into difficult discussions where goals of care and manner of death are on the table.

If we can ablate AF, implant coronary sinus leads, and understand action potentials, we surely can talk with patients about the role of the ICD.

JMM

Your comments

	ICD decision making: Difficult conversations . . . and whose decision is it?
	# 1 of 10	June 21, 2012 04:50 (EDT)
	Ray	First of all, I'm not usually a blog reader or contributor but I was curious about your comments during HRS as I was unable to attend. I now routinely tune in and appreciate your frank comments and insight into common clinical conundrums. I was happy to see that you have serious and heartfelt conversations with patients referred for ICD implantation as I feel the same as you. I believe the hard part of the ICD implantation is living with the device; knowing what it does or potentially could do. In my conversations with patients, I apologize upfront for having a very frank conversation about their mortality, yet at the end of the visits I've only received appreciative comments for being upfront. I think the patients need and deserve to feel in control of their destiny and it's our job to help facilitate their wishes. After all, we work for them. How often have you seen the patient referred for an ICD with an existing DNR order? Who didn't understand the meaning of the order? Or for that matter, what an ICD does?
	# 2 of 10	June 22, 2012 07:05 (EDT)
	John Mandrola	Ray, Thanks for your thoughtful and helpful comment. First, I appreciate your kind first paragraph. My friends kid me by calling me a blawger. I am really grateful that you took the time to read and then write on the topic.  Second, thanks for the advice. I like tha idea of starting the ICD conversation with an apology for having to talk frankly about mortality.
	# 3 of 10	June 22, 2012 12:26 (EDT)
	Dianne Leloudis	Thanks for a very compassionate discussion of these complex  issues facing both patients and providers. I would add one point:  awareness of illness status fluctuates in patients, and it affects their comprehension.  What you say one visit may be heard and understood by your patient, only to be lost as circumstances change, families weigh in,  and time moves forward. Repetition and including family when possible is key.
	# 4 of 10	June 22, 2012 12:34 (EDT)
	Carter Newton MD FACC	Great message, inciteful and clinically sensitive. Dying of a chronic non cardiac illness with a heart that just wont stop is a corner that patients can easily get into. Also I wish the ICD indications were clearer and the data from RCTs more solid than many non EP cardiologists realize. This was recently addressed by a critical review in Europace by Katritsis and Josephson. (Europace. 2012;14(6):787-794). Also, collegues of ours often take the stance that if an ICD is approvable by medicare or a commercial payer, then it is indicated. This view then spills into indications for the Zoll Lifevest, heavily marketed but with little data beyond anecdotes in my opinion. Still as a temporizing device in some situations, it makes good sense.   You have made a nice contribution.
	# 5 of 10	June 23, 2012 12:06 (EDT)
	John Mandrola	Thanks for the comment. I agree wholeheartedly with having the family present during conversations.
	# 6 of 10	June 23, 2012 12:29 (EDT)
	John Mandrola	Thanks for the supportive words and keen observations. Full disclosure: I have always been drawn to Dr. Josephson's skeptical take on ICDs. And the strength of my skepticism has only increased with years in practice. I agree with your point about the difference between Medicare acceptable and clinically useful. The irony of the current ICD scrutiny is that many patients who get 'illegal' ICDs because of timing issues may be more indicated than the frail older patient w/out timing violations. Here is an abstract that shows patients implanted outside of the evidence base had similar outcomes to those implanted within guidelines: http://www.abstractsonline.com/Plan/ViewAbstract.aspx?mID=2863&sKey=4fb6302d-8d23-452e-ac6a-73ca9910dd91&cKey=8baa8aa6-4220-4efa-a2a3-04b09e5b6ab3&mKey={BAEF2DB4-7615-4F2C-851A-E5D7461EBD4E}
	# 7 of 10	June 25, 2012 10:08 (EDT)
	Lori	I am a survivor of SCA.  One other thought about the pre-ICD meeting.  In my case, I feel like I was NOT involved in the decision at all.  The discussion happened.  And, I have a vague memory of it.  But, even though I was there, I was still under pretty powerful drugs from having been recovering from the SCA and all the tests.  Please keep that in mind when having this pre-ICD meeting - is the person getting the ICD in condition to even have the discussion?   In my case, my parents really made the decision.
	# 8 of 10	June 25, 2012 03:53 (EDT)
	Carey	I wish every EP had this discussion (not assigning blame -- no time, not inclined to -- lots of reasons).  Candidates for primary prevention -- an ever- (over) expanding population of individuals -- are not making informed decisions, and both sides have to deal with the consequences. To me, the first thing anyone who's a candidate for an ICD should hear is: this is a decision you're making for the rest of your life. No turning it back in for a restocking fee. And, to me, providers aren't asking such questions as: statistically, is this individual more likely to get an inappropriate shock than an appropriate shock?  (if so, what are we doin'?)  And: am I putting some of these in because I believe they will save lives, or because I believe they will avoid potential liability, or even a perception problem?  Thank you for the column.
	# 9 of 10	June 27, 2012 07:38 (EDT)
	barry karas	Dear Dr M;  Fabulous and sobering article. When faced with a patient referred for ICD, i throughly review the guidelines, Dicuss the fact that they are undergoing a course of therapy ... Not a single implant event. Additionally i explain that according to the best data it will take 11 implants to save one life and that every time a device fires does not mean it SAVED A LIFE" i dis cus risks factors including the pathophysiology ie.  ischemic vs non-ischemic , valvular heart disease, chf, nsvt, age, renal failure , male vs female and implant cost to patient taking into acount insurance. When faced with the not uncommon response of patients " What would you do if this were your loved one?" i respond.  " please understand this is not a cop out, but I have given you the best information available.. this is your decision ."   Most patients regardless of educational level will provide help in the decision makimg.  I was trained by two incredibly ethical physicians who advised me of the following :: Only perform a procedure if it accomplishes one of these goals 1  help a patient live longer. 2 help a patient feel better.
	# 10 of 10	June 28, 2012 08:54 (EDT)
	John Mandrola	I really appreciate your words.  Thank you for writing.  What a fantastic take home!

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