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My newly admitted patient was at the end of a very long struggle with a devastating genetic disorder. He had been treated by some of the finest experts in America for his rare disease, and had come to my rehab unit for aggressive physical and occupational therapy. He was exhausted, but mustered the energy to tell me (probably the 100th physician to treat him) his complicated story.
Listening to this man, and examining his frail body, I realized that he had already explored every treatment option and avenue available. He had extensive conversations about his genetic variant, and which drugs could possibly modify his course. He had tried pretty much everything once, with little improvement. He told me that the team of experts at my hospital were rallying to repeat some of the costly treatments that had failed previously, to see if maybe this time they could make a difference.
As our eyes met, I realized that we both knew that these treatments were not worthwhile. I could see that he didn’t want to be “non-compliant” with his physicians’ recommendations, and was reluctantly willing to give their plans a shot. I knew that he needed to hear that it was okay to say “no.”
I took in a deep breath and voiced what we both knew to be true – there was no further need for IV medication. Now was the time to make the most of the function he had, to get him home with family support, and to focus on enjoying life rather than fighting a disease.
The relief brought him to tears. I began to put his socks back on his cold feet. He asked if I could leave them off.
I joked with him softly, “I guess your feet just want to be free.”
He smiled and nodded.
I didn’t order any tests or treatments, I just stood next to him in the moment.
And sometimes, that’s what a doctor is supposed to do.
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Photo Cred: Max S. Gerber
I learned a valuable lesson recently about how difficult it can be to make the correct diagnosis when you see a patient for a very short period of time. In the acute rehab setting I admit patients who are recovering from severe, life-altering brain events such as strokes, head injuries, and complex medical illnesses. It is challenging to know what these patients’ usual mental function was prior to their injuries, and so I rely on my knowledge of neuroanatomy, infectious disease, and pharmacology to guide my work up. However, I have learned that asking the patient’s family members about what they were like (in their healthier state) is extremely important as well. Personality quirks, likes and dislikes, and psychiatric history all offer clues to ongoing behavioral challenges and mental status changes.
This fact was never clearer than when I met an elderly gentleman with a new stroke. He was extremely drowsy, non-participatory, and was not oriented to anything but his name. The stroke had occurred in a part of the brain that does not affect cognition, so I began to wonder if he had an infection or was having a reaction to a medication. I carefully ruled out all possible sources of infection, and I combed through his medication list and removed any potentially sedating drugs. His mental status remained unchanged for several days. I then began to wonder if perhaps he was suffering from significant dementia at baseline, and that he was living at home with more help from his family than they had initially reported. The therapy team and I began to consider a transfer to a nursing home. The family was horrified by the idea.
As it turned out, his grandson shared with me that he believed that the patient was autistic. Because his grandpa was elderly, he grew up in a time where not much was known about autism, and diagnoses of the condition was rarely made. He was therefore never formally diagnosed, but had many of the textbook characteristics. His stroke, combined with a sudden transfer to an inpatient hospital setting, was very distressing for the patient, and he had shut down to protect himself from the mental anguish. The “dementia-like” behavior that we were witnessing was merely an acute psychological reaction.
Armed with this new information, the therapy team requested family members to be present during all sessions – to encourage participation and to provide comfort and normalization of the transition from home to hospital. The patient responded beautifully, and made remarkable gains in his ability to walk and participate in self care activities.
I apologized profusely to the family for our period of confusion about his diagnosis and care needs, and offered reassurance that we would do our very best to help him recover from his stroke so that he could go home directly from the hospital. He did in fact return home, and with a little extra help from his daughters, he is enjoying his usual projects and activities.
As for me, I will never presume dementia without careful family confirmation again.
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A Cat Playing Whack-A-Mole
Medication non-adherence is a hot button topic in healthcare. Physicians lament patient “non-compliance” with their medical advice, and policy wonks tell us that more than half of patients do not take their medications as directed. Missed opportunities to control chronic illnesses such as diabetes, heart disease, and cancer surely do cost us untold billions of dollars and millions of quality life years lost annually in the U.S. But there is a flip side to the equation that no one is talking about. The costs of polypharmacy (over medication).
In my opinion, many Americans, especially those over 65, are taking far too many medicines. The unwanted side effects and medication interactions (both known and unknown) can be devastating. In my line of work (inpatient rehabilitation) I receive a steady stream of patients who have fallen and injured themselves or have been involved in serious accidents. An astonishing number of these incidents are related to drug side effects.
Take, for example, the elderly woman who had mild hypertension. Unbeknownst to her physicians, she was not compliant with the diuretics she had been prescribed. Each successive visit it was presumed that she was taking her medicines as directed, and that they were not sufficient to control her blood pressure. So the dosing was increased. Her husband dutifully picked up the new prescriptions from the pharmacy, and she collected them (unopened) in her desk drawer.
One day this spirited lady caught pneumonia and required a couple of days of inpatient monitoring and antibiotics at the local hospital. Her son decided to assist with her transition back home and stayed with her for a week, taking on both cooking and medication administration duty from his dad. He found all of her pills in her desk drawer and began to give them to her as directed.
Several days later the distraught son told me that his mother’s health had taken a nose-dive, and that she was hallucinating and acting uncharacteristically hostile. He took her to a more distant specialty hospital, where their initial impression was that she had advanced dementia, which had probably gone unnoticed by a son who hadn’t lived nearby for years. She would benefit from hospice placement.
The reality was, of course, that this poor woman was as dehydrated as a raisin and was becoming delirious from excessive diuretic use. Once I figured out that her son’s sudden, and very well-intentioned, medication adherence program was to blame, we stopped the blood pressure medications, gave her some water and she returned to her usual self within 24 hours.
On another occasion, I admitted a closed-head injury patient who had lost her front teeth after fainting and falling head first onto the asphalt in a grocery store parking lot. This was her third head injury in 6 months. A review of her medications revealed no less than six medications (that she was dutifully taking for various diseases and conditions) that carried a known side-effect of “dizziness.” We were able to discontinue all of them, and to this day I have not heard of another fall.
Just last week a wise, elderly patient of mine declined to take her blood pressure medicine. I explained to her that her blood pressure was higher than we’d like and that I wanted to protect her from strokes with the medicines. She smiled kindly at me and said, “I know my body, and I get dizzy when my blood pressure is at the levels you doctors like. The risk of my falling and hurting myself when I’m dizzy is greater than the benefit of avoiding a stroke. I’ve been running at this blood pressure for 80 years. Let’s leave it be.”
What I’ve learned is that although there are costs to not taking medicines, there are costs to taking them too. It is hard to say how many injuries are accidentally prevented by patient non-adherence. But we all need to take a closer look at what’s in our desk drawers, and pare down the prescriptions to the bare minimum required. I consider it a great victory each time I reduce the number of medications my patients use, and I would urge my peers to join me in the pharmaceutical whack-a-mole game that is so sorely needed in this country.
The American Geriatrics Society provides a helpful list of medications that should be avoided whenever possible in older individuals.
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If you have not read the latest essay and editorial about scandalous physician behavior published in the Annals of Internal Medicine (AIM), you must do so now. They describe horrific racist and sexist remarks made about patients by senior male physicians in front of their young peers. The physicians-in-training are scarred by the experience, partially because the behavior itself was so disgusting, but also because they felt powerless to stop it.
It is important for the medical community to come together over the sad reality that there are still some physicians and surgeons out there who are wildly inappropriate in their patient care. In my lifetime I have seen a noticeable decrease in misogyny and behaviors of the sort described in the Annals essay. I have written about racism in the Ob/Gyn arena on my blog previously (note that the perpetrators of those scandalous acts were women – so both genders are guilty). But there is one story that I always believed was too vile to tell. Not on this blog, and probably not anywhere. I will speak out now because the editors at AIM have opened the conversation.
When I was a third-year medical student I was assigned to tag along with an ophthalmology resident serving his first year of residency as an intern in general surgery. We were to cover the ER consult service one night, and our first patient was a young Hispanic girl with abdominal pain. It was suspected that she may have had appendicitis. Part of the physical exam required that we rule out a gynecologic cause of the pain. And so a pelvic exam was planned for this young girl of about 12 or 13. She was frightened and clinging to her grandmother. She had never seen a gynecologist before and had explained through her grandmother that she was a virgin – making a gynecologic cause of her abdominal pain less likely. I offered her some reassurance with my broken Spanish and held her hand as we wheeled her on a stretcher to a private examining room. The resident whispered in my ear, “This is going to be fun.”
The resident was creepy at every stage of the exam. He was clearly relishing the process, slowly instructing the poor girl to position herself correctly on the table. He held her knees apart as she whimpered and cried. He pretended to have difficulty positioning the speculum, inserting and reinserting it an unconscionable number of times. All-in-all it probably took ten minutes for him to get a cervical sample (this usually takes under 60 seconds). He performed the bi-manual portion of the exam in a bizarre, sexualized manner. I was furious and nauseated.
The patient was finally returned to her grandmother and the resident took me aside to ask how I thought he did. The perverted expression on his face was not lost on me. I looked at him with daggers in my eyes, but I knew that if I confronted him head-on it could trigger an investigation and in the end I had no hard evidence to prove that he had done anything wrong. It would wind up being a “he said, she said” scenario. I mustered the courage to say, “I think you were slow.”
For a fleeting moment he was taken aback by my insubordinate criticism and then he said the sentence that still haunts me today, “Well it was her first time.”
Each time I think of this interaction I feel sick to my stomach. I wonder what more I could have done.* I wonder if he is still out there violating his patients, and if anyone has ever confronted him. My only consolation, I suppose, is that he did not go on to become an Ob/Gyn. As an ophthalmologist one would hope that he had fewer opportunities for sexual abuse of patients.
I guess you could say that in my medical training, I witnessed a child rape. I don’t think it gets much worse than that… and I don’t know what to do with this horrific memory. I am forever changed.
It is my hope that these sorts of situations become true “never events” and that we create a protective environment where there are no career consequences for medical students thrust into the unfortunate position of whistle blower. Maybe the courageous AIM editorial is the first step towards redemption and healing.
*Note that I never saw this resident again. Our paths did not cross after the incident, and it was only at the end of the exam that I fully recognized the evil of his intent.
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A wrist graft similar to what my friend's husband required.
I watched helplessly as a dear friend went through the emotional meat grinder of a new cancer diagnosis. Her husband was found to have melanoma on a recent skin biopsy, and she knew that this was a dangerous disease. Because she is exceptionally intelligent and diligent, she set out to optimize his outcome with good information and the best care possible. Without much help from me, she located the finest specialists for her husband, and ultimately he received appropriate and state-of-the-art treatment. But along with his excellent care came substantial (and avoidable) emotional turmoil. The art of medicine was abandoned as the science marched on.
First came the pathology report, detailed and nuanced, but largely uninterpretable for the lay person. She received a copy of it at her request, but without any attempt at translation by her physician. In his view, she shouldn’t be looking at it at all, since it was up to him to decide next steps. She brought the report to me, wondering if I could make heads or tails out of it. Although I am not trained in pathology, I did know enough to be able to translate it, line-by-line, into normal speak. This was of great comfort to her as the ambiguity of prognosis (rather than certainty of metastasis and or mortality, etc.) was clearly outlined for the trained eye.
Then came the genetic testing and node biopsy. She was told that the tests could identify variants that would portend poorer outcomes, though it would take 6 weeks to find out if he had “the bad kind of melanoma.” Those 6 weeks were excruciating for her, as she planned out how they would manage financially if he needed treatment for metastatic disease, and if his life were shortened by various numbers of years. At week 6 they received no word from the physician, and so she called the office to inquire about how much longer it would take for the genetic testing to come back. She was rebuffed by office staff and was instructed to be patient because the lab was “processing an unusual number of samples” at this time.
Another week of anguish passed and she decided to contact the lab directly. As it turned out, they were eagerly awaiting the arrival of her husband’s sample, but it had been “lost” in hospital processing somehow. She called the hospital’s facility and someone found the tissue under a pile of other samples and tagged it appropriately and sent it on to the genetics lab. The hospital apologized for the delay via email – and she forwarded the note to her oncologist, so that he could sort out the potential processing bottleneck for other patients going forward.
The result was reported to the oncologist within a week’s time and in turn, the physician called (at 6:30am on a Monday morning) to discuss the result with my friend’s husband. He missed the call as he was in the shower getting ready for work, and wound up playing phone tag with the physician’s office for 3 more days. My friend had her heart in her mouth the entire time. She continued to imagine a world without her husband. If the disease stole him from her, how would she manage? What about the children? Could she make enough money alone to support her family?
“Why didn’t the physician leave any hint of the result in the phone message? If it was good news, surely he would have mentioned that.” She presumed. The physician required his patient to come into the office to discuss the results. And so they booked the next available time slot, another couple of days later. My friend was certain this was a bad sign.
As they arrived at the oncologist’s office, the staff forbade my friend to accompany her husband to the meeting. “Clinic policy” they stated. My friend’s mind was now spinning out of control – maybe my husband needs to be alone with the doctor because the results are so devastating that he must hear it by himself?
She insisted, nonetheless, to accompany him – and the staff felt obligated to clear it with the oncologist before they allowed her to enter the examining room with her husband. They whispered to him in another room before giving her the irritated nod that she could proceed. You could have cut the tension with a knife… she was certain that a death sentence was about to be handed down.
Once the oncologist entered the room, he spent the first 10 minutes making excuses for the delay in genetic tissue results. He argued that the hospital lab was actually not at fault for the delay and listed all the various reasons why nothing had been done incorrectly. His was so single-mindedly focused on the email he received weeks prior (simply describing the delay — as if it were some kind of assault on his own competency) that he almost left the room without telling them the results of the genetic test and biopsy sample.
As an afterthought at the end of the meeting, he announced: “Oh, and the tests suggest that you have a melanoma that is extremely unlikely to metastasize. The wide excisional biopsy is likely curative.”
And off he swished, white coat flowing behind him as he flung wide the door and moved on to the next patient.
The irony is that my friend’s husband got “great” medical care with a large helping of unnecessary suffering. His initial biopsy, wide excision and skin grafting, lymph node testing, and genetic lab studies were all appropriate and helpful in his diagnosis and treatment. But the way in which the information was presented (or not presented) was what made the entire process so painful. Unfortunately, we spend most of our time as physicians focused on the technicalities of what we do, rather than the emotional consequences they have on our patients and their families.
As we continue to “deliver healthcare” to our patients, let’s remember not to serve up any sides of unnecessary mental anguish. Clear and timely communication makes a world of difference in patient anxiety levels. And reducing those is part of the art of medicine that is so desperately needed, and disturbingly rare these days.