A heart device might save your life but leave you miserable. That awful possibility is the reason for new advice urging doctors to talk more honestly with people who have weak hearts and are considering pumps, pacemakers, new valves or procedures to open clogged arteries.
Too often, patients with advanced heart failure dont realize what they are getting into when they agree to a treatment, and doctors assume they want everything possible done to keep them alive, says the new advice, published Monday by the American Heart Association and endorsed by other medical groups.
It calls for shared decision making when patients face a chronic condition that often proves fatal and they need to figure out what they really want for their remaining days. If they also have dementia or failing kidneys, the answer may not be a heart device to prolong their lives.
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 advice.
One of his former patients is an example: a 74-year-old man too weak to go shopping or walk around his neighborhood. He was so miserable that doctors thought he would feel better with a mini artificial heart – a $100,000 left ventricular assist device to make his heart pump better.
The man suffered bleeding problems, needed a breathing machine and spent 10 weeks in the hospital. He and his wife hated that his device kept him tethered to a power supply or gave him only a few hours of freedom on battery power.
They came to us a couple months after he went home and said his quality of life was not what he wished and asked to have the pump turned off, Allen said. The man died about a year ago.
The goal is not only living long, its living well. People often make decisions about the long without even considering the well, said Jessie Gruman, president of the Center for Advancing Health, a patient advocacy group.