By Michelle M. Kittleson, MD, PhD, as told to Marijke Vroomen Durning, RN
All medical specialties have unique challenges. Cardiology is no different, especially for patients with heart failure. When patients hear they have heart failure, they’re terrified. But they shouldn’t be because, even if it sounds that way, heart failure does not mean your heart is failing and you’re about to die any minute.
A more accurate term for heart failure – and probably less scary – is cardiomyopathy. “Cardio” means heart, “myo” means muscle and fat, and “pathy” means disease. If you have cardiomyopathy (aka heart failure), it just means you have heart disease.
Talking to Patients About Their Diagnosis
Many patients learn about diseases via TV, the internet, or their friends. What they find out often scares them. But for most patients, these sources don’t accurately depict the reality of living with heart failure. So my first challenge is establishing trust, so patients believe me when I tell them something contrary to what they have read or heard.
The second challenge is discussing prognosis. The prognosis varies dramatically, depending on the type of disease. And there are many effective therapies. There is disease-directed therapy, which can reverse the disease process in some cases. There are other therapies to support the heart and help patients feel better, live longer, and stay out of the hospital. So giving patients hope for a future they thought they might not have is a major challenge.
The third challenge involves balancing optimism with realistic expectations. I'm a big believer in addressing the elephant in the room – worst-case scenarios. Patients' minds are already there. For a cardiologist like me, the worst-case scenario is a heart transplant. So, I always bring it up on the first visit. I say they’re going to worry about a transplant, but I tell them whether it’s something they need to worry about. Maybe they’re light-years away from one or it’s not an option for them. My role is to help patients calibrate their concern to their medical condition, and I promise that I will be honest about their prognosis and options.
A part of my role is adjusting expectations, especially if patients have gone into their portal and looked at test results. Family doctors or other specialists may order tests and see abnormal findings. But since the heart isn’t their specialty, they may not have the context of the test results. Being very well-meaning, they may share their concerns with the patients and refer them to a cardiologist.
I try to calibrate their concern. We talk about my goal: to keep their life as normal as possible. I tell them they will be taking medications, adjusting them as we go along, with the goal of living their life doing what they want. But it’s not all sunshine. I also talk openly about what to watch for in terms of deterioration because that is always possible.
One major obstacle I face working with people who have heart failure is health care system costs. For some medications, cost is a barrier, even with insurance. This is where the unsung heroes of medical care come in. Many offices have a dedicated nurse who manages the paperwork of insurance approvals. That’s crazy – to use health care resources to handle paperwork, rather than to save lives!
I get involved, too. One patient came to me and needed mechanical support (an artificial heart) to keep her alive until she got a heart transplant. The insurance company said no. They said her situation didn’t warrant the device yet. I called the company’s medical director. I told him that he had the power to save this patient. He approved it. Now, years later, this patient is enjoying life with her grandchildren. That means the world to me. But I am so frustrated that my patients must face these financial barriers, and I must spend my energy overcoming them.
Patients Worry; Doctors Make Plans
One of my catchphrases is, “Patients worry, but doctors make a plan.” It’s natural for patients to worry. Being told you have heart failure or heart disease is scary. But as their doctor, I have to make a plan for them. Knowing that our patients worry, we need to give them the tools to deal with the uncertainty. They need to learn what they can control and what they can’t.
I accept that my role as their doctor is to help them deal with the disease, not just treat it.
I wrote a book called Mastering the Art of Patient Care precisely to help medical students and doctors catch or recapture the joy of medicine. Diseases may become routine with experience, but patients must not. This book offers my approach to understanding the patient as a person, providing optimal care, and deriving joy from the patient-doctor bond.
Photo Credit: Justin Paget / Getty Images
Michelle M. Kittleson, MD, PhD, cardiologist, Cedars-Sinai California Heart Center, Beverly Hills, CA.