Sorry I’ve been slow to post this. But here it is. Jennifer McNulty was kind enough to let us post her very detailed notes and fabulous report on last month’s Stanford Patient ICD Day. Thank you so much Jennifer! We really appreciate it.Patient ICD Day offers strategies for coping with psychological burdens of heart disease
(PS: Jennifer notes that this report has been reviewed by Drs. Sears, Hsia, Vagelos, and Linda Ottoboni of Stanford.)
For the first time in history, patients are living with heart disease, presenting both a privilege and a burden, particularly for about 95,000 patients who are living with an Implantable Cardioverter Defibrillator (ICD).
That was the picture painted Friday, during a Stanford Patient ICD Day that drew about 125 people to the Sheraton Hotel in Palo Alto, where they heard from medical experts, an ICD patient, and from Dr. Samuel Sears, the leading expert on the psychological aspects of living with an ICD.
The first speaker of the day, Sears discussed the "special knowledge" ICD patients gain through hardship.
"You have some unique stressors. There’s universal understanding that heart problems can be scary," said Sears, a nationally recognized expert in the psychological needs of ICD patients. "Those fear factors can play into your thoughts. It requires some psychological fitness training."
Experiencing shock distinguishes ICD patients from other patients, and it is "universally stressful," acknowledged Sears.
Sears expressed deep respect and admiration for ICD patients. "I have a tremendous window on your life," said Sears, a professor of health psychology at East Carolina University in Greenville, North Carolina. "You’re the first generation to have to live with heart disease."
The television show Survivor is popular, he said, because viewers get a front-row seat to watch people cope with adversity. "But the real survivors are in this room," he said. "You’ve overcome threats and challenges. You’re the ones who’ve earned the show’s motto—‘outwit, outplay, outlast.’"
Sears and other speakers emphasized the life-saving nature of ICDs, which numerous studies confirm are the most successful treatment for patients suffering arrhythmias. Yet life with an ICD presents unique challenges that require adjustments, said Sears, who discussed his work helping patients make the shift "from victimhood to survivorship."
The ICD is a "magnificent invention that saves lives better than anything else we have, and one of the challenges is to believe in the device," he said. "It’s a modern-day challenge. You’re the first generation trying to do it."
"Coping requires a menu of strategies—there’s no formula," said Sears, noting that the "more strategies means more success."
ICD patients who adopt stress-management strategies enjoy clear benefits, including lower anxiety, said Sears, whose most recent research results were published in the July 2007 issue of PACE.
"My purpose today is to increase your confidence in your ICD," said Sears, who challenged patients to "add one new strategy" that will help them achieve a high quality of life.
Sears described his role as a patient advocate by saying he helps people "encounter the threats of heart disease" and sort through what they need to change, what they need to accept, and "to try not to mix up the piles."
Heart disease "takes some things away from you," including your innocence about the health care system, said Sears. Living with an ICD forces patients to make changes and ties them to a regimen of medications, doctor appointments, dietary awareness, and specific strategies designed to manage arrhythmias.
Those suffering from what Sears described as a "victim" mindset tend to focus on what they’ve lost. "They emphasize how difficult it is, their desire to go back to life the way it was before their illness," said Sears, adding that they also feel walled off from others who they’re certain can’t understand what they’re going through.
By contrast, patients who make the shift to survival emphasize a positive, future-oriented outlook, said Sears. "They say, ‘I don’t want to lose any more,’" said Sears. "They engage others in their quest."
Yet Sears acknowledged that "nobody can be a survivor every minute of every day."
"I’m okay with negative emotions. They’re part of the process," he said, as long as patients remain on a positive trajectory.
Grieving one’s losses is part of moving toward acceptance and cultivating a positive attitude about life, said Sears, who encouraged patients to identify the precious—and often fleeting—moments that make them grateful to be alive.
"What are the moments you’re glad to be here? What are those moments for you, and who in your life is there with you? Recognizing the value of those moments—that’s the special knowledge," said Sears.
Identifying one’s "lifelines" is another step toward survival, according to Sears. Lifelines may include a patient’s health care team, family members, and a support group.
Referring to another television show, Who Wants to Be a Millionaire?, Sears emphasized the importance of multiple lifelines. "Most of you have one perfect lifeline—a spouse, partner, loved one, parent, or adult child, but to be on the show, you have to have five lifelines," said Sears. Patients need three or more people with whom to share their emotions, he said.
"I know three people is a lot," said Sears, quipping that he couldn’t find three people to help him move a couch recently. But the challenge is to be "more deliberate about providing and receiving support."
Similarly, Sears urged patients to figure out what they love to do and "build it into your life. Quality of life is an achievement, not an entitlement."
Activities of pleasure, mastery, and responsibility can be rewarding, distracting, and replenishing—although they are not necessarily how we spend our time.
"Coping with heart disease can lead you to be disengaged," said Sears, who urged patients to reengage with people and activities that matter to them. "Disengaging stacks the deck against you for quality of life," he said, noting that often people aren’t sure what they like to do.
"No amount of medical care can tell you that, but knowledge is power," said Sears. "Know your condition and know your device. Many patients tell us they feel privileged to be around this device, but it’s also intimidating. The more you learn, the more confident you become."
Sears urged ICD patients to get to know their health care team, the manufacturer of their device and its capabilities, and to seek emotional comfort from other patients, support groups, and web sites.
One of the most common side effects for ICD patients is second-guessing their decision to have the device implanted, said Sears. "It’s a leap of faith," he said. But studies comparing the outcomes of ICD patients and those whose arrhythmias are treated with medication are definitive: "Devices save lives better than medication," said Sears. "That knowledge builds confidence."
Quality of life is at least as good for patients with ICDs as for those whose conditions are managed only with medication, said Sears, who urged patients to seek the information and stress-management strategies that will give them the confidence to live their lives to the fullest.
ICD patients face ever-present reminders of their own mortality, from the device itself and the potential of being shocked to the actual experience of being shocked. Such reminders can produce fury and resentment, as they did for one patient Sears described. That patient eventually made peace with his situation and came to experience such reminders as "love reminders" that help reinforce his will to live.
Stress-management strategies include deep breathing, various relaxation techniques, imagery, and focusing on life’s special moments. "And they really are just moments," he said. "It’s those moments that matter, that make taking your medicine and going to doctor appointments worth it."
Linda Ottoboni, the arrhythmia nursing clinical coordinator at Stanford University, echoed Sears’s remarks when she introduced the session called "Surviving Therapy and Confronting One’s Mortality." While health care providers view each successful shock as cause for celebration, the experience of being shocked makes patients feel acutely vulnerable. "It’s the elephant that sits in the room," she said.
A patient’s perspective
The patient’s perspective was presented by Hugo Campos, 42, who described his own journey "from being a healthy person to dealing with cardiomyopathy and having an ICD," which included depression, anxiety, and terror.
Campos has hypertrophic cardiomyopathy (HCM). He received an ICD last November and describes his approach to "living with adversity" as proactive. "I’m crazy about learning as much as I can," he said. But it hasn’t always been that way.
Following fainting episodes at age 11 and age 37, and years of frequent heart palpitations, Campos was misdiagnosed twice—first with vasovagal syncopy and then with mitral valve prolapse. When he was ultimately diagnosed with hypertrophic cardiomyopathy, his doctor reassured him that it was "not the dangerous form." But a third fainting episode, at age 40, scared him. Campos turned to the Internet, where he learned about the Hypertrophic Cardiomyopathy Center at Stanford University.
"That’s when I learned that I had three of five risk factors for sudden cardiac arrest," recalled Campos, whose doctors recommended an ICD. "I had three days to research the three manufacturers of ICDs. I wanted to be a stakeholder."
Following the implant, Campos was devastated. "I went home to depression and anxiety, which I was completely unprepared for," he said. Waking up in tears at night, Campos recalled touching his chest, feeling the ICD, and asking himself what he'd allowed to be done. "It was awful," he recalled.
By communicating with other ICD patients, Campos realized that his feelings were common—"the universal reaction to the implant." Yet only three pages of the 130-page book published by ICD manufacturer Medtronic were devoted to the patient’s emotional adjustment, and that was limited to descriptions of the ICD as a "guardian angel."
"It would have helped to know it was okay to be frightened—about the device and the reason we have it," said Campos. "We all feel this way."
For Campos, an active member of the Bay Area ICD User Group, seeking information and support has helped him come to terms with the ICD. "It’s what works for me. It is how I cope," he said. "I just need a lot of information and knowledge to put me at ease."
Patting his chest, Campos said, "I’m taking this to the grave. It’s a matter of survival and commitment. Every time I feel it, it reminds me how serious I have to be about this. All I want is to be able to live a good life as well as I can, despite adversity."
The Bay Area ICD User Group meets every month on the second Saturday of the month. Campos’s presentation is available online.
During the discussion of mortality, Sears mentioned an article in the October 2008 edition of the Journal of the American Medical Association. The study, which explored whether it "help or hurt" to discuss death with patients, concluded there’s no evidence of harm—and some indication that patients experience more confidence, improved quality of life, and less invasive treatments if mortality is discussed, he said.
The statistics regarding sudden cardiac arrest (SCA) make a compelling case for ICDs, according to Sears: Without an ICD, only 5 percent of patients survive SCA; nearly 450,000 patients die each year. "Part of adjusting to heart disease is to not really think much about this part of the story," said Sears, who showed clips from a television program that aired this fall, highlighting the choices of two heart patients: One had an ICD implanted after suffering cardiac arrest, and the other chose to forego the procedure. He died the day after the interview was filmed.
Several ICD patients in the audience described their own experiences, including one man who has survived melanoma, lymphoma, two heart attacks and now has an ICD. Commiserating, Sears spoke directly to the man: "The truth is this is just flat hard. You’ve had things taken away. Very generally, when we lose things, there’s depression, the grief of loss, whereas anxiety is the fear of loss." Encouraging the man to engage his mind as actively as possible, Sears urged him to shift gears, use different strategies, surround himself with "good people," and be tolerant of all of his emotions.
Responding to an audience question about the appropriateness of ICDs for older patients, Sears said emphatically, "Age is not a reason not to get one." A forthcoming journal article presents compelling data on the benefits of ICDs for patients between in their 70s, 80s, and 90s, he said. An 86-year-old woman in the audience, diagnosed with cardiomyopathy 20 years ago, said she had a defibrillator implanted at age 83. "I’m still dancing," she said.
In other presentations, Henry Hsia, an associate professor of cardiovascular medicine at Stanford University, discussed implant techniques and ICD therapy. Heart failure is on the rise and the relative risk of rhythm-related death is greater among ambulatory patients who are "relatively healthy" and living with cardiac dysfunction compared to those with severe heart-failure symptoms. Patients with ICDs represent a "relatively tiny" portion of the population that would benefit from prophylactic ICD protection, he said.
Hsia reiterated the life-saving role played by ICDs and emphasized their value compared to patients whose conditions are treated only with medication. He noted their relative cost-effectiveness, as well.
In a second talk, about minimizing ICD therapy, Hsia described the configuration of the devices and their role in the treatment of patients suffering from heart arrhythmias. Patients describe the experience of being shocked differently, from "discomfort" to "a kick in the chest," he said.
Minimizing therapy requires a three-pronged approach: Device-related strategies include monitoring leads and programming the ICD to deliver appropriate pacing and shocks, if necessary; arrhythmia-related strategies are designed to minimize the recurrence of heart rhythms that inappropriately trigger the ICD; and patient-related strategies focus on treating the underlying condition, whether the primary issue is a structural problem or an electrolyte problem.
Optimizing ICD programming can be daunting, noted Hsia. "We utilize probably only 30 percent of the available features," he said.
Optimizing medication to treat the underlying disease is important. "Amiodarone and beta blockers are the best combination to avoid shocks, but they might increase the energy required," he noted.
Surgical ablation can be a "tricky" but highly effective treatment, but it is very complex, said Hsia. "It’s a big surgery with significant risk," he said, noting that the technique was developed before the advent of defibrillators and not many surgeons perform the procedure. Catheter ablation is an alternative strategy, he said.
Optimizing cardiac function
Optimizing cardiac function was the topic of a talk by Randy Vagelos, a professor of medicine and medical director of the cardiac care unit at Stanford. About 5 million people in this country have congestive heart failure (CHF), an affliction that affects men and women in equal numbers, he said. About 550,000 new cases are reported each year; 10 out of every 1,000 patients are younger than 65 years old. CHF represents the single largest expense for Medicare, noted Vagelos. Only 4,000 patients receive a heart transplant each year.
Soaring rates of heart failure are attributable to a "perfect storm" of conditions: People are living longer, more sedentary, more overweight, and suffer from high rates of high blood pressure, diabetes, and left ventricular hypertrophy (LVH), said Vagelos.
LVH, a thickening of the wall of the left ventricle, predicts the onset of heart failure later in life, he said. Because LVH is correlated with high blood pressure, controlling blood pressure at a young age is key. "One heart attack increases the likelihood of heart failure subsequently," he noted.
Yet many patients don’t have symptoms, said Vagelos, noting a study that found that up to 70 percent of patients' conditions went undetected.
One study of the causes of hospital readmission for CHF patients found that nearly 50 percent of readmissions were attributed to dietary noncompliance (24 percent) or prescription noncompliance (24 percent), said Vagelos. "This is a real target for health care systems," he said. Other causes included failure to seek care (19 percent) and inappropriate medication (16 percent).