Low health literacy in our community compounded by financial limitations lead several patients and families to make uninformed medical decisions that turn out to be more detrimental to their health in the long term.
Many patients have often relied on poorly informed and untrained individuals to make decisions about their health care and sometimes encouraged to decline or defer recommended and needed medical procedures because they believed they were "unnecessary" or "expensive". Unfortunately, these "armchair doctors" have no training in medicine or health care and so are not equipped to make such recommendations, which sometimes lead to deadly consequences.
In the past few months, we have discussed the issues of medical costs, access, quality of care, patient outcomes and best practices. We have also addressed other impediments to optimal health-care delivery to Jamaicans and how those impediments lead to unnecessary loss of lives and long-term disabilities. We have provided solutions and hope that our readers will continue to engage appropriate stakeholders to ensure that we do what is appropriate to improve and preserve the lives of our fellow citizens.
In this week's column, we wish to highlight real-life cases that were seen at the Heart Institute of the Caribbean (HIC) and the deadly consequences that resulted from uninformed medical decisions.
Mr LD was a 67-year-old male in otherwise good health and on no medications who presented at HIC with recurrent dizzy spells and near-fainting episodes that have increasingly got worse over the past six months. Upon evaluation by our cardiologists, he was found to have complete heart block. Complete heart block occurs when the electrical signal cannot pass normally from the atria, the heart's upper chambers, to the ventricles, or lower chambers. This makes your heartbeat slow or skip beats and your heart is unable to pump blood effectively. Symptoms may be persistent or intermittent and often include dizziness, fainting, tiredness, and shortness of breath. Except when caused by medications that can be withdrawn or infections that can be treated, patients with acquired complete heart block will require a permanent pacemaker. Our doctors appropriately recommended that urgent pacemaker procedure be performed. While patient and family were interested in proceeding with the procedure, after speaking with some family members and "friends", he informed our team that the family felt it was unnecessary and expensive and so he declined to proceed with the permanent pacemaker procedure. Unfortunately, about three weeks later, his family came back to HIC to seek "clarity" because he slumped and died suddenly on Half-Way-Tree Road. The outcome was sad but predictable. All major international cardiology societies including the American College of Cardiology and European College of Cardiology recommend permanent pacemaker therapy as guideline directed medical therapy for complete heart block without reversible causes as in the case of Mr LD.
Some years ago, we were contacted by a colleague Dr DG, a highly placed public health doctor, with a request to see her friend, 65-year-old Mrs JM, who had developed exertional shortness of breath with mild swelling of both legs. Her symptoms suggested congestive heart failure. We saw her in consultation at HIC and performed an echocardiogram which showed severe leakage of the mitral valve (the valve connecting the left upper and lower chambers of the heart). The heart function as measured by the ejection fraction was still good at 65 per cent. This condition (mitral regurgitation) can be a sneaky problem and according to published data from hundreds of thousands of patients, we know the natural history of this disease. The heart function would continue to decline over time if this is not promptly addressed, until such a time that severe intractable heart failure would be the norm. The definitive treatment of symptomatic severe mitral regurgitation is surgery, of which the two primary surgeries are mitral valve replacement and mitral valve repair. This surgery is preferably done when the heart function is still preserved as was the case when Mrs JM was evaluated by our cardiologists. Consistent with international guidelines and best practices, our doctors appropriately recommended mitral valve repair surgery after evaluating her mitral valve in detail with transesophageal echocardiography (TEE). Furthermore, coronary angiography was recommended to evaluate for coronary artery disease which, if present, would be corrected at the time of mitral valve surgery. Unfortunately, after consulting with "some people", she declined surgery and decided to go on some medications including a water pill which was previously recommended by her GP before being referred for further evaluation at HIC. She did not come back to HIC until about five years later when she returned in a wheelchair, severely short of breath with massive swelling of her legs extending to her abdomen. She was in very severe heart failure and her heart function had declined from 65 per cent to 15 per cent. It was now too late for surgery. She died a few months later.
Mr AW was a 54-year-old male in relatively good health until he started experiencing chest pain and fainting episodes. He was evaluated at HIC and found to have critical aortic stenosis. Aortic valve stenosis — or aortic stenosis — occurs when the heart's aortic valve narrows. The valve doesn't open fully, which reduces or blocks blood flow from your heart into the main artery to your body (aorta) and to the rest of your body. In normal adults, the aortic valve area is usually between 3 and 4 cm² with no flow gradient between the chambers. In critical aortic stenosis, the valve area is usually less than 0.7 cm² and results in severe reduction in cardiac output. Patients begin to experience worsening chest pain, fainting and heart failure as aortic stenosis progresses. All international societies recommend aortic valve replacement surgery in patients with severe or critical aortic stenosis as the risk of sudden death is significant. Open-heart surgery was recommended to our patient for aortic valve replacement. He was reluctant to proceed because he did not fully appreciate the urgency. He delayed his surgery for many months until one day, his family called to inform us of his death in his sleep.
Mr PW is a vibrant 46-year-old salesman who presented at our emergency room at 1 am on a Sunday morning complaining of intermittent chest heaviness and cold sweats which had persisted for about two weeks. He stated that he was previously seen at another hospital ER where an ECG was done and was told everything was normal. He simply wanted another ECG to be sure because "they have already done every test at the other hospital and everything was normal". His ECG at HIC showed some evidence of "ischemia" but did not confirm a heart attack. Blood was drawn for cardiac enzyme, Troponin I to confirm our suspicion of a heart attack. Meanwhile, treatment was initiated, and admission was recommended to be followed with urgent coronary angiogram if troponin results indicate a heart attack. He discharged himself against medical advice. Unfortunately, the chest discomfort became unbearable and he returned to our facility. His ECG at this time showed frank ST elevations in the anterior leads consistent with a major heart attack. He was promptly taken to the Cath Lab were a 95 per cent blockage of the left anterior descending artery was seen and successfully treated with angioplasty and stenting. Troponin level came back at 96,000 again consistent with a major heart attack. Fortunately, because of rapid intervention, Mr. PW did well and echocardiogram done at three-month follow up, showed no residual heart damage.
Chest pain or discomfort is always an emergency and must be treated as an emergency until proven otherwise. A "normal" ECG does not exclude coronary artery disease or even heart attack. Patients with clinical suspicion for heart attack or coronary artery obstruction must undergo comprehensive evaluation in a timely and urgent manner to avert catastrophic consequences.
These unfortunate cases illustrate how low health literacy can handicap the ability of patients to get the best possible care.
We are facing a difficult situation where, because of low health literacy, individuals make medical decisions without full understanding of the implications of their decisions. Sometimes, as illustrated in the cases presented above, these uninformed and misguided medical decisions can lead to catastrophic outcomes. There is urgent need for improved patient education and health literacy so that individuals can make informed choices and not be swayed by other considerations that could cost them their lives or lead to long term disability.
Dr Ernest Madu, MD, FACC and Dr Paul Edwards, MD, FACC are consultant cardiologists for the Heart Institute of the Caribbean (HIC) and HIC Heart Hospital. HIC is the regional centre of excellence for cardiovascular care in the English-speaking Caribbean and has pioneered a transformation in the way cardiovascular care is delivered in the region. HIC Heart Hospital is registered by the Ministry of Health and Wellness and is the only heart hospital in Jamaica. Send correspondence to firstname.lastname@example.org or call 876-906-2107.
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