Monthly Archives: November 2013

Questions Without Answers

Today I went to a visitation at a funeral home for my friend’s daughter. She was 24.

She had had developmental delays and multiple medical issues, but this was not expected and the cause is not known.

My friend is a doctor. A really good one. One with fiercely loyal patients because she is a fierce advocate for them. She is one of those doctors with phenomenal interpersonal insight on top of top-notch clinical skills. Her bedside manner is impeccable.

And now she has to answer the same question from scores of visitors – why? – without an answer. The same way she has to answer her patients’ questions of “why me?” or “why my mother?” or “why my husband?” without an answer.

Sometimes we just don’t have answers. Sometimes we just don’t know why. And not knowing why takes away our power to prevent. That’s why we do research. That’s why we have scientists. Because finding the answers to the “whys” is what gives us the power to figure out the “hows.” How to fix. How to prevent.

Always searching for answers so that we can have some semblance of control. Always looking for reasons so that our world can make sense.

So many doctors get angry when their patients don’t do well. When they can’t find a cause for something. When their treatments don’t work. They can’t tolerate the powerlessness.

Most doctors that I know keep thinking about their patients (or even other people’s patients they hear about) who don’t do well – and keep coming back to “why is this happening?” “what can I do?” and “what should I have done differently?”

These are also questions that parents ask when something is wrong with their children. They reflect a sense of responsibility coupled with a feeling of impotence.

For my friend, herself a beautiful healer, there is a loss and a wound that will never heal. May she someday find peace, even if not answers.

Eye Eye

I had been working on an entirely different post, but I got sidetracked yesterday by a brief scare. I received a phone call in the late afternoon from someone very close to me. Please note that this someone is also a doctor. “Uh, I need you for a minute. I’m kind of freaking out. Can I talk to you?”

She had just gone to her local optometrist to get a new prescription for glasses. The optometrist looked in her eyes, told her that both of her optic nerves were swollen, that this was caused by a brain tumor or multiple sclerosis, and that she should proceed immediately to a hospital for an MRI. She has had no symptoms whatsoever that would have been indicative of either of these things. She realized this. I said that someone else needed to evaluate her and that there were much more likely (and benign) explanations. She of course knew this, but when a healthcare provider says something like that to you, it can be difficult to remain rational and objective.

She had already called the leading ophthalmology hospital in her region and had been told that the emergency room was overflowing and that it would be hours until she could be seen. A very wise woman, also a part of our conversation, suggested that she go to the ophthalmologist’s office where she had been seen in the past. One call to the office, and she was told to come in and that she would be seen right away.

The ophthalmologist looked into her eyes, still dilated from her earlier exam. She looked very closely. The nerves were not swollen. The ratios were not quite normal, but everything was crisp, as it should be. Her visual field testing was normal. Although the ophthalmologist who had seen her in that office years ago had since retired, the doctor now seeing her had access to past records and could see that this anatomic variant had been noted in her exam many years before, and needed nothing more than observation. No swollen nerves. No brain tumor. No MS.

The optometrist certainly did the right thing by refering her patient on when she noticed an abnormality. And the ophthalmologist said that swollen nerves were a reasonable interpretation for someone to make of her exam if she had not seen such a thing before or had not had access to past records. But a few things could have been done better. First, assuming the medical situation does not involve something that requires instantaneous action, taking a few minutes to look for a back-story, to find old records, and to think about what clinically makes sense in a particular situation, can be very useful. Even when a situation does warrant immediate action, this digging can be done simultaneously to the early action so that it can guide further actions. One of those benefits that will come when electronic medical records are all able to “talk to each other” someday is that this will be able to happen faster. Second, even though a patient is a doctor and could come up with a list herself of all the potentially horrible things that could cause something, and even though a patient with no medical training can also do a quick internet search and also come up with a terrifying list of possible causes, a healthcare provider should probably be careful, while of course communicating the need not to ignore something, not to scare the living daylights out of a patient.

For example, “Your belly pain and tenderness concerns me. This is not something we should ignore. There could be a number of different causes, but right now we need to make sure it’s not your appendix, so I’m sending you to the hospital. I’m calling now to let them know you’re coming,” rather than, “Appendicitis causes this pain. Get to the hospital right now.”  Or, “I see something on your EKG that doesn’t look quite right to me. You don’t have any cardiac symptoms, and your physical exam is fine, but I’d like a cardiologist to look at this. I’m calling Dr. Smith’s office now and will fax the EKG directly to her, unless you have a cardiologist who you already see that I could talk to,” rather than, “You’ve got an abnormal EKG. This could mean you’re having a heart attack. Go to a hospital and get a cardiac catheterization right now.” Or, “I’m seeing something that doesn’t make sense when I look at your optic nerves. I don’t want this to wait too long, so I’d like you to see an ophthalmologist today to be evaluated. Do you have an ophthalmologist I can call, or should I send you to one of the ones I know?” rather than what was said yesterday…

Of course it’s a balance for healthcare providers – you certainly need to convey a level of urgency and the importance of addressing certain situations in a timely manner, but a little bedside manner can go a long way. Yesterday’s situation could have gone a different way. Assuming the medical reality was the benign anatomic variant that it turned out to be, there could have been a big waste of resources: a trip to a random emergency room with a message from the patient that “my optometrist just told me my optic nerves are swollen in both eyes and that I need an MRI,” a quick look in the back of the eyes done in a light room with a poorly functioning ophthalmoscope by a doctor who is not specifically trained to distinguish subtle back-of-the-eye findings, and a very expensive, unnecessary imaging study. (Please note that I am by no means implying that a test with negative results is unnecessary – but in the above case an evaluation by a specialist and a thorough review of medical records made it unnecessary. Tests are frequently needed to rule out certain conditions, and ruling them out by no means implies that the tests were not important to do!)

If the eye findings had in fact been something dangerous, if there had been accompanying symptoms or visual field defects, then prompt imaging and diagnosis would have been imperative. I am glad that the optometrist was able to recognize that something was not “normal” and needed further evaluation. And here is where we find the doctor-patient interaction from years before lacking in effective communication. Even if a physical exam finding or idiosyncrasy is completely benign, a patient needs to know about it. It is the doctor’s responsibility to say to the patient, “You have an unusual finding – it doesn’t have any clinical significance, it is not at all harmful, and you don’t need to worry about it, but you should know about it in case another healthcare provider sees it and doesn’t know what it is. I’m writing down the name of it and a description, so future doctors can determine whether something they find on your exam is this particular thing or something else. Please have any of your other care providers call me with any questions about this in the future.”

And a fully empowered patient will ask, after any physical exam or test, what all of the findings are, even if the findings are benign. Ask for copies of any test results (disks of any images, copies of EKGs, etc.) and for copies of the test/imaging reports/interpretations. Ask for physical exam findings in writing. The more detail you ask for, the more healthcare providers will give you, and the more they’ll get in the habit of providing such written details to all their patients. Electronic medical records are making it easier for this to happen.

Any one of us has the potential to get scared, even when (and sometimes moreso when) we have a lot of medical knowledge. Call people who can help calm you down and think clearly. Gather your information. Seek expert opinion. Keep good records. And remember to breathe.