Better Heart Failure Management? Involve the Family

Ileana L. Piña, MD, MPH


August 27, 2014

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Hello. This is Ileana Piña, Associate Chief of Cardiology at Montefiore Einstein Hospital and Medical Center in the Bronx, New York.

I am happy to report that I am here in Amelia Island, right outside of Jacksonville, Florida, participating in the annual program about heart failure that has been run by Dr. Kirk Adams from University of North Carolina and Dr. Herb Patterson. I have been coming to this program for many years and every year I learn something new.

It is amazing that a syndrome that we think of as simple can have 3.5 days of lectures dedicated to it. There are so many aspects of heart failure that we often don't think about. Simple things like hemoglobin level can affect a patient's outcome. How does the patient look? What is the patient's nutritional status? Is the patient frail? These all become contributing factors in heart failure.

I want to spend a little time today talking about families and the caregivers of these patients. I heard 3 or 4 lectures today that emphasized the importance of patient adherence. If patients don't take their medications, they are in trouble and they will not derive benefit if they are skipping or discontinuing their drugs. It is even more worrisome when, without our knowledge, other providers are removing the drugs that we know work.

Bringing in the family is something that we haven't talked a lot about in the world of heart failure. Perhaps our nursing colleagues have had it right for a long time in actively bringing in the caregivers and all the patient education that is done. At the Cleveland Veteran's Administration Hospital, we had something called the "shared medical appointment" clinics, where we welcomed not only the patient but the patient's next of kin and the caregivers -- the people who were going to be watching over the patient, their "guardian angels" -- to hear the patient education so that they could participate in the patient's care with open eyes.

I have added something else to my recommendations to families, which is, if your loved one is admitted anywhere that we don't know about and we aren't informed about that hospitalization, please pick up the phone, call us, and let us know, because we can often intervene and try to stop something that might be happening during the hospitalization with physicians who are totally unfamiliar with the patient. I tell them not to change medications without telling us. Give us a call. Ask us questions.

A very interesting focus group study was done by a large society using social media. They used Twitter and Facebook postings for patients with heart failure. They found that the number-one concern of patients wasn't the amount of sodium in their food (which we get so worried about) or how much liquids they could have; it was about their medications. Patients said, "I never hear why I am taking these drugs. I never hear why they are important. I have no idea if I can take them on an empty stomach or if I should take them with food, and will they interfere with anything else? Plus, what do I do with all the other bottles that are sitting in my house from previous admissions?"

The focus on medications, which we realize is so critical, needs to involve the family. I would like to start a new paradigm of caregiver education at the same time that we do patient education. If you carefully read the new healthcare law of which I have spoken many times, it talks about patient- and family-centeredness -- not just patient-centeredness, but involving those around the patient. As part of that team, the patients will certainly do better.


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