What responsibility does a physician have to educate a patient regarding a poor diagnosis/prognosis or need for a procedure, even if more tests are needed to confirm the diagnosis/prognosis or need for the procedure? The lack of patient education will only causes anxiety and answer-seeking from potentially dangerous sources. While this issue is not a major ethical issue, it is a question of doctor responsibility that affected me this week and is best explained by providing some personal details.
I have a congenital heart defect that was surgically repaired 21 years ago. I am still missing a pulmonary valve but have been very fortunate to not have any complications. However, last week, my cardiologist informed me that my right ventricle is enlarging due to blood from the pulmonary artery “falling” back into the ventricle. While this is not too much of a problem yet (I have no symptoms), as a precautionary measure, I need a pulmonary valve. To be certain this is the right course of action, my doctor wants an MRI done after this semester is over before discussing the surgery. I go to the top children’s hospital (adult congenital defects are still so new because most kids with congenital defects died before adulthood, so I am followed by a pediatric cardiologist) in the country so I am certain my doctor is correct and the MRI will not show anything contradictory to his current belief. Therefore, I expect to have surgery shortly after Christmas.
However, other than telling me that my other structural deformities prevent the valve from being inserted via catheter, my doctor failed to provide any additional information regarding the surgery. My last week has been filled with very anxious research and discussion, in which most cases, results only in more questions and concerns than answers and reassurance.
While I understand (and appreciate!) my doctor’s insistence on reviewing the MRI before taking such a drastic step as cutting my chest open, I still feel he had an obligation to provide a bit of education on the surgery to me now rather than waiting several weeks for the MRI and then discussing my options. Some questions, such as how this surgery and recovery will affect my other medical conditions, can only be answered by a doctor. While I feel I am smart enough to look at reliable research, many others are not and do not have reliable resources, such as friends and colleagues who are physicians. I cannot imagine having to go through the next few weeks without having the ability to answer basic questions as some patients may be required to do. If a physician has to deliver some bad news, he or she should provide some basic information regarding that condition or procedure so that the patient can have some understanding and not suffer the anxiety of not knowing and not understanding.
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2 comments:
I agree with your concerns on the physician's responsibility to provide as much information as they can. Many people are left in the dark concerning their own health and well being, and without access to accurate information. Considering a situation as serious as yours, its surprsing to me that your doctor did not divulge more helpful information to you.
Doctors should share all information regarding a patient's diagnosis and prognosis. To do so empowers the patient to partner in their care.
One of my sisters was also diagnosed with a congenital heart condition. An RN, she wasn't told, and later discovered the problem after it evolved to a critical stage, requiring invasive procedures and major surgery. She was angry about the information being withheld. She died 2 years after that. Patients should be told.
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