Oh, when the tables turn! Over the last few months, I have spent more time on the receiving end of of health care than any prior period in my 57 years. This has helped open my eyes, jostle my brain, stir my heart, and put my role as a deliverer of health care into a new perspective.
The lessons I learned, of course, came via my mother. Isn’t this always the case? After 84 years with no signs of significant health problems, she recently became ill. Over a period of a few months, she went from being in seemingly excellent health to getting short of breath walking 20 yards from her bedroom to the kitchen. She was hospitalized with new-onset congestive heart failure and he work-up revealed critical aortic stenosis and three-vessel coronary artery disease. According to her cardiologist, she needed an aortic valve replacement and a three-vessel bypass, not an easy operation in the best of circumstances. At her age, with an ejection fraction of 35% and a creatinine that tended to twitch upwards when her Lasix dose was increased, I knew she was in the for the experience of a lifetime. What I did not realize was how unnecessarily tortuous her journey would be, and what it would feel like to be on the receiving end of health care.
I accompanied my mother to her first visit with the cardiac surgeon, who was excellently trained, highly skilled, and had good outcomes. What surprised us was that he appeared to have already decided, before walking into the exam room, before asking her any questions, and before examining her, that her age precluded the surgery her cardiologist had recommended. He asked a few perfunctory questions about how she was feeling, which my mother answered briefly. as is her style. The surgeon asked no follow-up questions, nor did he inquire about how her quality of life was different now than a few months earlier. After a couple of minutes, he told her he had reviewed her records and could not agree to operate. He said she was too old. The surgery would be too risky. Even if she survived, the recovery period would be to long and fraught with complications.
His words hit my mother like a bomb and didn’t sit too well with me either, since we had anticipated leaving the visit with a surgical date in hand. We expected the surgeon to be cautious, to carefully find out whether the operation was needed, to evaluate whether her overall health would preclude surgery, and to provide informed consent about the risks and benefits. We assumed he would agree that her life expectancy without surgery would be less than a year, and that year would be one of increasing discomfort until she died. Instead, we heard that 84 year olds should not undergo this kind of surgery. Period.
Since neither of us was expecting this outcome, we didn’t push back, although I did tell the surgeon my mother could not keep living the way she was without surgery. Over a few months, she had gone from being an active senior citizen to not being able to walk around her house. The surgeon said he would order another cardiac imaging study and see her back in a few weeks for a final discussion.
My mother, a robust and resilient lady, was frustrated. Over the next couple of days, she ruminated about how she should have handled the visit differently, been more assertive, challenged the surgeon’s statements, and explained how she felt now compared to a few months earlier. She believed it was her fault the surgeon had decided not to operate. I tried to reassure my mother that the outcome of the visit was not her responsibility and that the surgeon had already made up his mind.
I, too, thought I had mishandled the visit. I should have interceded and taken over the encounter. I should have intervened and taken over the encounter. But — and this is an interesting phenomenon — when you’re sitting in an exam room with a high-powered, supremely confident and decisive physician who is unwaveringly directing the visit, setting the agenda, and who neither sits down nor smiles, it is remarkably hard to present your concerns — especially when the visit starts very differently than expected and ends after precisely 15 minutes, when the doctor decides the visit is over. Even though I am a doctor, too, I still fell into the trap. By the time I realized what happened, the surgeon had already disappeared down the hall.
Lest I drown you with detail, let me just say the surgeon agreed to operate a the next visit. Whether he would have done so anyway, or whether he was swayed by my email in which I cogently presented a medically persuasive case for surgery, I don’t know. Having to lobby the surgeon to save my mother’s life made me realize how difficult it can be for patients and their families to interact with the health care system. For those who don’t have an “in,” who don’t have the clinical knowledge to challenge the physician, who do not have family members to advocate for them, their experiences can be intimidating and daunting.
I have reflected quite a bit about my own conduct as a physician in the exam room. Do I give patients and their families enough opportunity to say how their lives are impacted by their illness? Do I consistently ask if they are OK with my recommendations or do they have other questions? Not always. I need to do better.
The surgery took place in late June, and went perfectly. The surgeon’s hands were guided by care, experience, and, thankfully, his desire to achieve the impossible. My mother’s hospitalization lasted two weeks. Those 14 days were intense for everyone, most especially for her. In my ineractions with the hospital staff, I tried to approach them as the patient’s son, not as the patient’s son-who-is-a-doctor. There was much that was good during those long days and longer nights. It was wonderful to have nurses and doctors who carefully explained the progress and the temporary setbacks. I was truly touched to see the compassion and gentle humanity of most of the nurses and doctors who interacted with her.
And there were some things that were not so good, but these problems were infrequent. It was disconcerting when some nurses and doctors were abrupt and evasive for no apparent reason. The biggest disappointment came one week in to her hospitalization, when my mother started deteriorating and the problem was approached superficially and cavalierly. After watching her decline over a 36-hour period, I finally put on my patient’s son-who-is-a-doctor hat, pulled rank, and insisted on a change in treatment. Had I not done so, I am certain my mother’s decline would have become irreversible, and her demise would have been attributed to her age and a high-risk surgery.
Fortunately, her situation turned around, she resumed her progress, and left the hospital a week later. This is well and good, but I was again led to ask what about patients who do not have family members in the medical profession and have no one to advocate for them on clinical grounds? All I can say is, those patients need to have superb physicians taking care of them, doctors who are not only clinically sharp, but also compulsive, nuanced, and attentive to details and subtleties. When I end up in the hospital after I get old and sick (hopefully in that order), assign me to the OCD doctor on the staff. Please.
At the follow-up visit with her surgeon five weeks post-op, my mom smilingly told him she already felt quite a bit better than she did before surgery, and gave him a very warm and heart-felt (literally) compliment. Surprisingly, or maybe not, the surgeon deflected her gratitude, saying he never allowed himself to feel proud about his accomplishments. Was he just being modest? Or was he a bit embarrassed that here was this woman who was a living testament to both his surgical expertise and his premature assessment of her unsuitability for surgery? His own prowess had trumped his initial clinical impression. No wonder he seemed a bit awkward and conflicted at this meeting, even though he allowed himself to sit down and even ventured a small smile.
Fortunately, my mother was the recipient of his amazing skill and she was very happy he had been the one to open her heart, place his hands gently and skillfully inside it, and carefully repair its aging infrastructure. What this surgeon accomplished was a miracle which no thanks could ever repay. Nonetheless, my mother still plans on sending him a bottle of wine once a year on the anniversary of her surgical dates as a show of thanks and a reminder of… well, let’s just call it a show of thanks.
(September 2008)