Death Is an Option: The Benefit of ICDs Is "Not as Big as We Think"

November 15, 2006

November 15, 2006 (Chicago, IL) - Most patients with an implantable cardiac defibrillator (ICD) still ultimately die uncomfortable, slow deaths from heart failure, new data from a French registry show [1].

Regrettably, heart-failure patients themselves greatly overestimate the ability of ICDs to save lives, and most say they would be reluctant to turn off the defibrillator even if they were terminally ill, according to a recent survey [2].

Both the survey and registry results were presented here at the American Heart Association 2006 Scientific Sessions. The moderator of a press conference on the subject, Dr Robert O Bonow (Northwestern University Feinberg School of Medicine, Chicago, IL), said: "This research underscores the need to explain to patients that they can still die."

Dr Garrick Stewart (Brigham and Women's Hospital, Boston, MA), who reported the survey findings, said: "We need to see the data clearly. While some heart-failure patients will die from a fast chaotic rhythm disturbance, most will die slowly with deteriorating organ function, suffocating shortness of breath, painful swelling, and overwhelming fatigue. We cannot stop reminding our patients that heart failure is a fatal disease."

Dr Jean-Yves F Le Heuzey (Hôpital Européen Georges Pompidou, Paris, France), who described the French experience, said that while his study showed that heart failure remains the leading cause of death for ICD patients, only time would tell whether adding cardiac resynchronization therapy (CRT) to an ICD will improve mortality.

CRT with ICDs: Hope for the future

In their EVADEF registry, Le Heuzey and colleagues tracked 2418 patients implanted with an ICD for various underlying causes at 22 centers in France between 2001 and 2003, with follow-up to 2005.

There were 274 deaths, 115 (37.5%) of which were from heart failure and 24 (13%) of which were from cardiac arrest with electromechanical dissolution. Other causes included fatal arrhythmias (6%), cancer (11%), septic shock (6.9%), and complications from heart-transplant procedures (4.6%).

"Heart failure and cardiac arrest without fatal arrhythmia remains the first cause of death for ICD patients, regardless of the reason for ICD implant," Le Heuzey said.

Hopefully, the increasing use of CRT together with ICDs in the future will decrease mortality rates by limiting the number of deaths from heart failure, he concluded.

CRT, used together with ICDs, is known to improve symptoms in around one third of patients, but there are no firm data yet on whether the two together will improve mortality over and above the benefit provided by ICDs alone.

Better communication is key

To determine patient perceptions about the survival benefit of ICDs, Stewart and his team conducted a survey with 104 heart-failure sufferers, 67 of whom already had an ICD in place. Participants were chosen to broadly mirror the population of the landmark SCD-HeFT trial.

"The majority of the patients [77%] thought an ICD would save 50 lives per 100, which far exceeds the seven to eight lives per 100 saved in SCD-HeFT," Stewart said, adding that even with an ICD in place, 29 to 30 per 100 patients in SCD-HeFT died by the end of the five-year follow-up, most from deteriorating heart failure.

Estimates of survival benefit did not differ between patients with mild and those with severe heart-failure symptoms or between those with and without an ICD. However, those with an ICD were more confident the device would save their lives than patients without an ICD (67% vs 16%).

"While ICDs are a dramatic advance to improve survival and provide peace of mind for people who have already had a life-threatening rhythm, we need to communicate better with heart-failure patients about the low likelihood of a life-saving shock from an ICD in patients who have had no prior rhythm problem," Stewart stated.

Dr Lynne Warner Stevenson (Brigham and Women's Hospital), a coinvestigator on the survey, said: "Frankly, the benefit is not as big as we think."

ICDs are often marketed to doctors as producing a 23% reduction in mortality, and there is often a reluctance from physicians to admit that death can occur, almost a feeling that death is optional, she noted. "But what the patient cares about is that he himself will have a better outcome."

However, until cardiologists can better predict which patients will derive survival benefit from ICDs, patients must be better educated about the limited benefit of these devices to decrease sudden death and about the greater likelihood of gradual death with progressive heart failure, the Boston researchers said.

Stevenson explained that, in her institution, they have developed a way to discuss the issue with patients [3]. "We tell them that of 100 patients who receive an ICD, 30 will die anyway in the next five years, seven or eight will be saved by the device, 10 to 20 will receive inappropriate shocks that are painful and debilitating, and five to 15 will suffer complications besides unnecessary shocks."

Doctors can learn to give bad news

Stewart and Stevenson went on to question patients in their survey about what they would do if faced with the possibility of terminal disease. Of the participants, 39% said they would never turn off their defibrillator, 55% said they would keep the ICD on even if they were dying and receiving daily shocks, 70% would keep it on if they were dying from cancer, and 100% said they would keep it on even if they were struggling to breathe all the time.

Bonow said doctors must discuss this issue with their patients. "As clinicians, we've all experienced the agony of loved ones seeing end-of-life shocks," he noted.

All the doctors at the press conference said advance directives--so-called "device living wills"--should contain information on the patients' wishes for the end of life and their desires about what should happen to the devices after their deaths.

In a separate presentation [4], Dr Barry K Rayburn (University of Birmingham, Alabama) spoke about having difficult conversations with patients and determining advance directives. "Nearly 80% of the patients we interact with will ultimately die of heart failure either as a primary or secondary cause," he noted.

"Communicating bad news is an important aspect of our role as physicians, and it is often underappreciated," he told heartwire . "But we can learn how to do this."

  1. Le Heuzey J-YF, Chatellier G. 2689 Death causes in a cohort of 2418 patients with an implanted defibrillator: The EVADEF Registry. American Heart Association 2006 Scientific Sessions; November 14, 2006; Chicago, IL.

  2. Stewart GC, Stevenson LW. Patient Misperceptions about the Survival Benefit of Implantable Defibrillators for Primary Prevention of Death in Heart Failure. American Heart Association 2006 Scientific Sessions; November 12, 2006; Chicago, IL. Presentation 1877/C135.

  3. Stevenson LW, Desai AS. Selecting patients for discussion of the ICD as primary prevention for sudden death in heart failure. J Card Fail 2006; 12:407-412.

  4. Rayburn BK. Having difficult conversations and determining patient's advanced directives. American Heart Association 2006 Scientific Sessions; November 14, 2006; Chicago, IL.

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