Thursday, June 27, 2013

Loss of Control

When we become patients, we are no longer in control. One must do this to undergo surgery, and even for some other treatments. So one must be able to trust that someone else will make the best decisions for you. For physicians, who are frequently "control freaks," this surrender of control can be quite difficult. We often do what we can to try to maintain the semblance of control of self, the semblance of normalcy. And, I would suggest that this is something good if it doesn't interfere with necessary treatment.

Many years ago, I cared for one of the faculty members at the institution where I trained. He was a neuroradiologist and an excellent teacher. I had really enjoyed learning from him. One weekend he suffered a subarachnoid hemorrhage. He was brought to the emergency room and underwent multiple studies over the course of the day. He insisted on seeing each of the studies himself. I held the films up for him to look at as he was flat on his back on a gurney. As he reviewed them, he would talk to me about the findings like he was teaching about any other patient. Later he went to the intensive care unit and I put in lines for monitoring. He calmly tolerated the days of being tethered to the monitors. After he was freed from the tethers, he found the stash of films that the neurosurgery residents kept on the unit to show to the attendings at the time of rounds. He would review them and call me with the results. Many of these calls were in the middle of the night, about problems which had already been addressed. But, it was important for his sense of self as a physician, as a radiologist, to do this. It gave him a familiar sense of control over his position. He was not just a patient. Instead he was helping to care for patients.

Similarly, on a visit to an expert on my problem, we spent much of the visit discussing research and implications for treatment. As my friend who accompanied me on the visit and was the note taker commented after we left that it wasn't a normal consultation since the expert knew that I was also a physician. Very early in the conversation, the expert commented that there was no data available on what the best treatment in my situation is. He then went on to discuss the available data on my problem and related diseases and suggest a treatment plan by extrapolating from what was known. He also mentioned chemotherapy agents that have not been shown effective yet in my disease but have benefit in diseases with similar genetic aberrations. This sounded promising to me, since tumor genetics seems to be a good way to design therapy regimens. But, he reminded me there is no data there yet. Overall, I found the consultation quite helpful, though little new was suggested for the near term. But one possible modification of treatment he suggested may be helpful in the future.

As my friend suggested, this discussion would not have been appropriate for an average patient. But for me, it helped to give me more understanding of my disease and a sense of control, since some of the research he discussed paralleled treatment approaches for diseases I treat in patients. Even the sense of extrapolating from other diseases seemed familiar and comforting since one disease in which I have been interested for some time is also quite rare. I felt like a colleague rather than a helpless patient. It was the right approach for me. It gave me a sense of control.

It is important for all patients to have that sense of control, at least to the extent possible. To not be in control is to be a victim. To be in control is to play an active role in one's life. This is not only good from the psychological perspective, but also people who have a more positive outlook seem to live longer and certainly have a better quality of life. This may be related to activity of the immune system, which seems to be less active in depressed people. It is important to have something to live for.


  1. Margaret - I am absolutely loving getting to know you better through your blog. It's crazy that we've 'known' each other for years virtually, but already, I've discovered so many things about you through your musings here that I didn't know.

    As a mom to a patient who has chronic medical issues, who has been critically ill and who has been through 50 surgeries in her very short life, it is so refreshing to me to hear a surgeon's perspective from "the other side." While I don't wish pain, fear or illness on anyone, I think for someone in a place of 'power' to experience it and then so openly and honestly share their experiences & their vulnerability with others is incredibly valuable.

    I'm currently reading Proof of Heaven by Dr. Eben Alexander (you know Neurosurgeons are my favorite) and it is an account of his journey through a near-death experience & how it changed him as a person & a surgeon.

    So thank you, Margaret, for sharing and I really look forward to hearing more of your journey.

  2. Thanks, Shannon. I have read reviews of Dr. Alexander's book, but have yet to read it. I'll comment on it once I've done so.

  3. It's been a while since your comment, Shannon. Yesterday, I spent the day at the hospital. While talking to another patient, we discussed Proof of Heaven which he was finishing up. To my surprise, he gave me the book. A review is coming soon.