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Most physicians will be thrust into the role of patient or caregiver at some point during their careers. Unfortunately, it’s not until this occurs that many become fully aware of the finer points of excellent care and communication. Take for example, the simple act of reporting test results to a patient. We do this every day, but may not realize that how we frame the information is as important as the data themselves.
I came to realize this on a recent hospital visit when I was in the role of healthcare proxy for a loved one with heart disease. Not only did various physicians present information with different degrees of optimism, but individual doctors presented things differently on different days… depending on (I guess) how tired/hurried they were. Consider these different messages with the same ejection fraction (EF – a measure of heart pump strength) and angiogram (heart vessel imaging) test results:
Doctor 1: “I wish I had better news. The EF is lower than we thought. It is low because of your previous massive heart attack.”
Doctor 2: “Although your EF is impaired, there’s a lot that can be done to improve pump function with medications.”
Doctor 1 (different day): “On the other hand, the EF might be temporarily low because of your recent flu infection. It’s possible it will bounce back in a couple of months and you’ll be back to your usual self.”
Doctor 2: “I’m not worried about your chest pain because we know it’s caused by small vessel disease. Your angiogram showed that all your main heart arteries are wide open. The pain is not dangerous, though I’m sure it’s annoying.”
Doctor 1: “Chest pain is always serious. You never know when it could be the big one.”
Doctor 3: “It’s hard to interpret EF because some people live long and productive lives with low EFs, and others are quite impaired with only a small dip in pump function.”
Doctor 2: “Sure there are medications we can try to improve your EF, but I doubt you’ll tolerate them because your blood pressure is kind of low.”
Doctor 3: “Don’t worry about the EF, it will correct on its own once we get your rhythm controlled. This is an electrical problem, not plumbing.”
All of this emotional whiplash caused by the same test results… due to different physicians’ interpretations of prognosis and treatment options. What can be done? First of all, we physicians need to take a deep breath and realize how our words affect our patients. They are scared and vulnerable, and they are looking to us for hope… and when there is real hope, why not emphasize it? There is no need to focus on the worst-case scenarios until we are well and truly in their midst.
I believe that being a good clinician is not just about giving patients factual information, but also about presenting data with kindness. Sometimes, as I’ve discovered with my own loved one, it’s not as important what you say, as how you say it.
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My patient’s son stood vigil outside her hospital room day and night. His eyebrows were frozen at an anxious angle. Although his mom was healing well from her injury, I could see that he was worried about next steps. He asked staff repeatedly about his mom’s pain management, and reviewed every therapy session she attended.
His mom, on the other hand, was deceptively charming. She was a thin, well-groomed elderly woman who knew how to exact empathy from others. When I looked into her room from a distance she appeared comfortable, lying in her hospital bed covered in a quilt that her son had brought her from home. When I entered the room to check on her, she would grab my hand and wince, telling me that the pain was severe but that she didn’t want any medication. She was quite invested in convincing me that she was unable to go home and care for herself, and that she needed to be discharged to her son’s home. She would not accept others help at home, nor would she go to a skilled nursing facility.
She was doing well in therapy, limited mostly by her macular degeneration (poor eyesight). Again, I watched her from outside her field of vision. I saw her stand without assistance, push her walker across the room, and navigate a couple of stairs. I heard her speak to her son in angry and dismissive tones. When she saw me approach her knees buckled and she crumpled to a padded bench. “I am not safe to go home, doctor.” She said. And her eyes filled with tears – “I am going to fall and no one will know.”
I took her son to a private room to discuss the predicament. I carefully raised the subject of how his mom was doing well physically, and could discharge home safely with home health services, but was angling for a discharge to his house. I asked him some open ended questions and learned that he was her only son, that his mom had been guilting him about quitting his job to care for her full time.
He became tearful – “I have only a few more years to go before I can collect my pension. Mom knows this but wants me to quit right now and move back home. If I do that I won’t have enough money to survive my own retirement. She has no friends and dad died several years ago. She says she doesn’t want any hired help at her house, and she cries when we discuss nursing homes. She says if I love her I will let her live with me. But I don’t have time to help her during the day. What am I supposed to do? She has been doing this to me all my life – getting me to do what she wants!”
I decided to tell him the unvarnished truth.
“I can see that your mom can be quite manipulative, and this has been an ongoing struggle. You need to take care of yourself. The fact that she wants to be with you 24/7 does not prove her love — a loving mom would not ask her son to jeopardize his financial future so that she wouldn’t have the ‘discomfort’ of caregivers in her home. Do not feel guilty about continuing to work. Her insurance will cover the care she needs. It’s ok to say no to her. That’s my professional opinion.”
The son let out an audible sigh. He thanked me profusely for telling him the truth. I told him that it was entirely possible that his mom would fall down on purpose once out of the hospital, to try to get him to change his mind. I warned him not to let her consume his life. She likely had a personality disorder that made her capable of squeezing the very life out of him.
My patient ended up discharging to a very nice skilled facility that her son had pre-screened for her. She was as happy as a wet cat on departure, but I believe it was the right decision for both of them. I just hope that she didn’t succeed in wrapping her emotional constrictor muscles around the neck of her poor son again. I tried my best to save him, but in the end I know that sometimes people have to save themselves.
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My patient was an elderly farmer with severe vascular disease. He had advanced leg artery narrowing, had survived multiple heart attacks, and was admitted to the hospital after a large stroke. He was incredibly cheerful, vibrant, and optimistic. He had a very large, loving family who took turns attending to him, and encouraging him with each small improvement in his leg and arm strength. They knew his neurological exam better than his doctors.
I was amazed at his recovery, given the size and location of his stroke (and his advanced age), I had suspected that he would end up wheelchair bound. But he was determined to walk again and get back to his gardening as soon as possible. His children told me that he was very stubborn and was a true “fighter.” As their patriarch, he carefully questioned each of them about their goings on, making sure that they were each on track with grain harvesting plans, animal feedings, and various farm-related projects. His life had meaning and purpose, and the hospitalization was merely a change of venue for his daily instructions.
Because my patient was so motivated, I offered to bring him to his physical therapy session early one day. To my surprise, he firmly, but politely declined.
“I have an appointment with my family in my room.” he said.
I wondered if they were going to discuss advanced directives with an attorney, or something of similar seriousness.
“Oh, I see. Well we will come get you at the regular time then.” I smiled and left the room.
As I walked down the hall back towards the nurses station I recognized various members of his family proceeding towards his room, dressed in what appeared to be their “Sunday best.” There must have been at least 15 people in the group, ranging from tweens to adults. They were smiling and upbeat.
Minutes later I heard wondrous a capella choral sounds wafting from the patient’s room and filling an entire wing of the hospital. All motion ceased. Therapists stopped pushing wheelchairs, exercises paused, patients with walkers stood silent in the middle of sterile, tiled floors.
My patient had delayed his therapy session for something far more important – a live chorus of loving family, singing for him in a private exhibition that managed to touch us all.
The music I heard that day taught me a very important lesson. Some people know how to live their very best, wherever they are. Even a life-threatening condition in a hospital setting cannot dampen the human spirit.
May we all aspire to have such a spirit.
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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.