Understanding the Medical Situation
Having advanced heart failure does not mean you have run out of treatment options. In fact, the growing selection of therapies and state-of-the-art technologies for advanced heart failure has made decision making more challenging.
This is where shared decision making helps. Your doctor knows your medical situation best and can narrow down treatment possibilities to the most appropriate options for you. Together, you sort through the options and consider how each treatment fits into your priorities and life goals.
“If patients can go through the process of what their goals are for life, especially as they approach the end of life, they can then think about how specific treatments fit into those and whether they should or should not pursue them,” said Larry A. Allen, M.D., M.H.S., heart failure specialist at the University of Colorado Anschutz Medical Center.
Implantable defibrillators are a good example, Allen said. For a patient who wants to live as long as possible, a defibrillator may reduce the risk of sudden cardiac death by shocking a fluttering heart (also known as ventricular fibrillation) back to its normal beat. But for patients who have expressed the desire to die in their sleep, a defibrillator may not be the best option.
“Working through those scenarios and identifying what the preferences are for the end of life actually helps frame the discussion around whether a defibrillator is appropriate or not,” Allen said. “Defibrillators are great, but they’re not the right answer for everybody.”
Knowing the Treatment Options
Advanced heart failure can't be cured, but it can be treated. Treatments can reduce your symptoms and help your heart pump as best it can. But with benefits come risks, which you should discuss in detail with your doctor before choosing a treatment.
Sometimes, patients don’t fully understand the possible side effects or tradeoffs of a treatment before deciding whether they actually want it, Allen said. A mechanical heart pump, for example, can help the heart pump better and relieve congestion-related symptoms such as shortness of breath. Patients may live longer and have a better quality of life as a result. But the pump, known as a left ventricular assist device, increases the risk of infection, stroke and bleeding in the gastrointestinal tract.
Even if the risks aren’t a deterrent, patients must consider that an electrical cord connects the pump to a power source worn outside the body on a belt or harness. “That, in itself, is a disease where you always have to be plugged in,” Allen said. “People need to recognize there are tradeoffs in the treatment decisions they make.” At some hospitals, palliative care specialists are called in to help patients make big medical decisions, such as whether to receive an LVAD.
Explore the possible benefits and risks of each therapy with your doctor and work together to decide what treatment you need now and what you may need in the future.