Heart devices save lives, but too often make the patient miserable. That unpleasant possibility is why physicians are being urged to talk more honestly with people who have very weak hearts and are considering pumps, pacemakers, new valves or procedures to clear clogged arteries. Patients with advanced heart failure often don’t realize what they are getting into when they agree to a treatment, and doctors assume they want everything possible done to keep them alive, according to the American Heart Association. The directive recommends shared decision making when patients face chronic conditions that frequently prove fatal; they need to decide what they really want for their remaining days. If they also have dementia or kidney failure, the answer may not be a heart device.
“Patients may feel that the treatment was worse than the disease,” said Dr. Larry Allen of the University of Colorado Anschutz Medical Center, who helped draft the new advice. One of Dr. Allen’s former patients was a 74-year-old man too weak to shop or take walks. He was so despondent that physicians thought he would feel better with a “mini artificial heart” — a $100,000 left ventricular assist device to improve his heart’s ability to pump blood. “Even if it goes well, people are left with an electrical cord coming out of their belly” and a higher risk of stroke and bleeding from the nose or throat, Allen said.
More than five million Americans suffer heart failure, and the number is increasing as the population ages. More and more high-tech treatments treat advanced disease, but they usually don’t slow its progression, they just keep people alive. And that means living longer with symptoms that do nothing but worsen. Patients typically don’t understand the repercussions when they agree to gadgets like a $30,000 to $50,000 implanted defibrillator, which shocks a quivering heart back into normal rhythm. “Defibrillators don’t actually make people feel better — it doesn’t treat the underlying heart failure. All it does is abort sudden death,” Allen said.
Allen and other physicians involved in the study stressed the importance of building a patient-doctor consensus with respect to questions of survival, symptom relief and quality of life issues. Depending on their personal situation, not all patients want to “do everything” at all costs. One way to facilitate such a discussion, according to the authors, is to reserve one day a year to review the patient’s situation, focusing on prognosis and possible treatments alongside an appreciation for the patient’s values and goals. This annual review is not intended to replace appropriate discussions about the patient’s ongoing care, such as when a turn for the worse or hospitalization occurs. “The process of checking in with patients on a regular basis is extremely important because heart failure and general health change over time,” Allen said.
Shared decision making goes beyond informed consent, requiring that healthcare providers and patients consider information together and work toward consensus. This process should focus on the outcomes that are most important to the patients, including not only survival but also relief of symptoms, quality of life and living at home. “For patients with advanced heart failure, the decision-making process should be proactive, anticipatory, and patient-centered. This involves talking about goals of care, expectations for the future, and the full range treatment options, including palliative care,” according to Dr. Allen.
Because the time required for shared decision making is tricky to fit into a regular clinic visit, the authors suggest a yearly review to discuss prognosis, consider realistic therapies, and spell out the patient’s values, goals and preferences. This review is in addition to discussions triggered by events such as hospitalizations and other changes in the patient’s health. “The process of checking in with patients on a regular basis is extremely important because heart failure and general health change over time,” Dr. Allen said.
Heart failure typically progresses with time. During the early stages, it can often be managed with medicines and lifestyle changes in diet, stopping smoking and exercise. Advanced heart failure requires additional treatments, including heart transplantation. A focus of the decision making process is understanding that “doing everything” is not always the best thing. For many patients with advanced disease, receiving symptom relief, comfort, and support and medical therapy are preferred.