As many of my readers know, I was intubated in an ICU about two months ago. (Do scan the comments—many of my readers disclosed their own health stories or those of friends and family.) I promised to post an update after my follow-up MRI and neurologist appointment, and we were incredibly relieved to learn that I’m going to be fine.
But in the month that has passed between my initial post about this incident and now I’ve had time to reflect on who I am, the work that I do, the patients I see, and what’s truly important.
Since my hospital discharge I have felt better each day. I still have a bit of positional vertigo and mild tinnitus, but these are better than they were even a month ago, and scarcely noticeable most of the time. I do feel that I need a bit more sleep, which is either from the six months of medication I’m taking or is a sequela of the traumatic brain injury. Thankfully, my memory and executive function are the same as they were before my illness, which is not to say my memory was perfect beforehand: Libby has complained for years that I don’t remember things that she says she’s told me. But now I have something to blame. (Unfortunately, Libby no longer buys the excuse.)
Exercise is crucial to me, both physically and mentally. Fortunately, I’ve been able to return to exercise, even running up to 10k (in freezing weather) and playing futsal (a type of indoor soccer). But it was not easy. Being sedated in an ICU for only a few days causes significant deconditioning, weakness, and stiffness, even in people who exercise regularly. In particular, I remember vividly how tight my hamstrings were after I was discharged from the hospital. I couldn’t even walk without feeling the strain! It took a great deal of effort to overcome the effects of immobilization. I can’t imagine how people must feel after they have been immobilized for even longer periods of time, particularly if they don’t start out in good shape. Fortunately, I’ve been able to regain my flexibility and endurance. Rebuilding my strength has been more difficult, but I’m working on it.
Getting back to running (which I had not done since my June 30 soccer injury) really helped my mental state. My first run was in Washington, DC, when I ran up Connecticut Ave. and through the National Zoo. As I passed by the animals with the wind in my hair I felt truly alive. And playing soccer with friends again (which had also been on hold since the summer) was also a wonderful feeling. Sadly, the time off did nothing to improve my soccer skills.
(Which reminds me of the old joke about the man who asked his surgeon if he’d be able to play the piano following his surgery. When he was reassured that he would he exclaimed, “That’s great—I’ve always wanted to play the piano!”)
I am not a worrier, but a small part of me was concerned about my follow-up. Despite my feeling well, is it possible my neurologist could have made a mistake? Diagnosis is sometimes complex and physicians are merely human and therefore prone to errors (see Groopman’s How Doctors Think). In this case my neurologist postulated a series of events to explain my illness, when usually we try to simplify our explanations. Could this really have been caused by an early tumor or a vascular malformation, about which the radiologist had expressed concern? We use follow-up encounters to verify or revise our hypotheses. I resolved to confront with equanimity whatever it should be.
Then, unexpectedly, the day before my MRI I received some sad news. A wonderful man in his early 60s, whom I was privileged to take care of for almost two decades, died suddenly at home. This was totally unexpected as his medical conditions had been well-managed and he took excellent care of himself. The acute grief hit me like a ton of bricks, like losing a close friend or a family member. I will miss him.
So that evening and the next day, when I saw patients, my sadness over losing this patient bled into anxiety over my impending MRI that afternoon. My melancholia was particularly ironic because, as has been my tradition for 20 years on my last clinic day before Christmas, I looked festive wearing a bright red sweater, red socks, and a Santa Claus hat. I felt like Canio in Pagliacci, hiding my feelings behind a costume and a painted smile.
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I finished my paperwork and headed to the MRI suite.
My first MRI was in 1987, when it was called NMR imaging (for nuclear magnetic resonance). Because of the dangerous sound of the word “nuclear,” it was renamed MRI (for magnetic resonance imaging). That scan was performed for a study I was doing in medical school. I wanted to harness the relatively high-resolution and digitized images of this then new modality along with supercomputers to generate three-dimensional reconstructions of spatially complex brain structures that could be manipulated in real-time for both education and diagnosis. To do this required a detailed NMR of someone’s entire brain, and since it was my study it had to be my brain.
In those days, such an intricate scan (very low-resolution by today’s standards) took many hours. As I lay in this new-fangled contraption and tried to ignore the very loud sounds it generated, I wondered if it would disclose some occult tumor or other pathology. Now, lying in an infinitely more sophisticated device (generating probably 100 times as much information using a tenth of the time of my NMR decades ago), I again was struck by how loud the machine was (you can download the soundtrack of a brain MRI here and the NY Times wrote a brief article about the source of the noise, which can be up to 125 dB) and again wondered what it would reveal. (I may have had similar thoughts during my last MRI in the hospital, but was unconscious and have no memory of it.)
My thoughts turned to patients who are in similar situations. Although we do a better job masking the sterile environment and the noise (with headphones through which one can listen to a choice of Pandora channels—I chose Jimmy Buffett both for its relaxing themes and to take my mind off the cold in Boston), it’s still very noisy and scary. And even more so when anxiety is overlaid.
My scan would not be read over the weekend, so I examined the images myself (although I am far from an expert at reading brain MRIs), which I could do because I am on the medical staff of our hospital. To me it looked better than the previous scan, but I reserved judgment until I saw the official reading. How do patients cope with several days of uncertainty following a Friday or weekend MRI? I understand that there may not be enough staff radiologists on duty to read scans performed over the weekends, but from the patient’s perspective waiting is difficult. At Beth Israel Deaconess and an increasing number of medical centers and diagnostic facilities, patients can view their test results and sometimes even the radiology images themselves. But sometimes patient access is delayed until the ordering physician has reviewed the result or the result is embargoed for a certain length of time based on the type of test result. And many facilities still don’t allow patients to see their results at all, which is just a travesty.
Some patients may be alarmed at what they read (particularly the ubiquitous risk-averse radiologist verbiage that includes a healthy dose of “Cannot exclude tumor or [insert your horrible disease here]; clinical correlation recommended.”) But having information early is better than not having that information, and the OpenNotes studies have shown that even when we let patients see their physician’s office notes they feel more empowered and engaged in their health, and the benefits far outweighed any risks.
This week I saw my neurologist who interviewed us, examined me, and reviewed my scan. He felt that everything was much better and that I should continue to improve. He’ll see us one more time in a few months, which will be around the time that I’ll be able to resume driving again (in Massachusetts drivers are prohibited from driving for six months following a seizure).
As we returned home, Libby and I breathed a collective sigh of relief. Although I felt well and seemed to be doing well, it was so reassuring to know that nothing was lurking beneath the surface that may come back to haunt us.
Several weeks ago, a colleague asked if I had viewed this illness as a gift yet. It seemed an odd question at the time. But although I couldn’t articulate it when he asked me, I do now see it that way, for several reasons.
First, as I reflect on my illness it colors how I care for and communicate with my patients. I’m also able to draw on my experience when I give presentations or teach about patient-provider collaboration and patient experience. Also, my positive regard for those around me has not diminished at all: I see friends and colleagues in a whole new light and truly appreciate them like never before. I feel truly blessed.
Now on to 2014, and hopefully a year with fewer experiences as a patient but even more empathy for my patients.
View related post here.
Connecting 
You know, this is the kind of post (and longer story) that makes people think, even if it doesn’t generate much discussion in the comments. That’s a good thing.
Danny, I told you this privately but I’ll say it here: as long as I’ve known you, I’ve not yet seen you write this kind of personal perspective – clear, believable, touching. I was glad when you joined the community of bloggers, but now I’m really looking forward to discovering the personal insights you’ll share as an emerging essayist.
I know it takes something to share one’s inner feelings, and you do it in a way that’s not at all sensational. Thanks.
Dr Danny. This is truly amazing. I work for one of those big companies who make MRI machines and I’ve been known to say “I don’t care how quickly the radiologist can see the images, I want to know we are able to help the patients get to know the diagnosis/treatment plan/etc” Thanks for bringing up that point.
I’m also truly relieved to hear you’re back to doing well — I often remark that I can not even imagine how patients who are caring for themselves find the stamina and energy to try to return to their normal. Caregiving is difficult, but I am not the one immobilized by surgeries or hospitalizations (in my case). I love hearing your insights.
Keep up the great – potent – meaningful – insightful and genuine blogging. It is great.
Thanks Catherine. Your insights are great.
I’m glad I have plenty of good health blogger role models!
Be well.
Glad to hear you are doing better Danny. You look very festive is your pseudo Santa outfit, but you need quite a few more pounds to make it look more realistic 🙂
A physician going through a health scare does provide a uniqe insight into the health system. The value of continuous communication in a relevant way is paricularly highlighted. The challenge is how to do this within the constraints of our current funding models. Open Notes is a great low cost way of ensuring every one is atleast figuratively on the same page. Add tools for asynchronous discussion and access to evidence based information and you start to get the basis for an clinical communication system that adds value for patients and clinician.
George, I think two changes to the payment model will help us along, both of which you can see around the globe, especially in the US.
One will be the move to value-based reimbursement, in which part of the quality equation is quality of care/keeping people well and some is patient satisfaction/keeping people happy.
The second is additional management fees paid to primary care physicians for managing the totality of their patient’s care and/or payment for a model like the Patient-Centered Medical Home.
As we shift to these rationalizations of payment for medical care, it will unleash creative innovations from providers. Some will be modest like incorporating asynchronous communication and some will be entirely new models of care, incorporating co-generated medical records, patient-generated health information, and team-based care.
Thanks for your comments.
Danny,
Glad to hear you are better. Thanks for sharing your story as hard as it might be. Your experiences will not only make you a better person but a better physician…better able to anticipate and manage the fears and concerns your patients experience. I will never forget the Friday night (5:00pm) my wife’s PCP told her she had lung cancer and let us take the X rays and radiology reports home before seeing the Oncologist on Monday. Read the vague report and seeing the tumors was horrible. But it happens all the time and doctors seldom think twice about it.
In any event, God speed in your continued recovery and welcome to the journey of the patient brotherhood! You are in good company.
Steve Wilkins,
Mind the Gap
Thanks for your comment and for sharing your wife’s story, Steve. On balance was it better to have been able to see radiology images/reports even without definite interpretation? Or would have have preferred to have had that information withheld until you saw the oncologist?
re: radiologist report – it is hard to answer. On balance I would say I would want the reports simply to keep the Oncologists honest when it came to bad news. In the long haul, seeing the reports always suggested questions to ask her oncologists. Inevitably the radiologist would mention activity in little nodules which the oncologists would not mention…and which upon questioning would say are nothing to worry about.
As a medicine resident, I learned that the official radiologists’ plant is the hedge. Almost all radiology reports include “Cannot rule out [insert your disease here].”
Danny,
> the official radiologists’ plant is the hedge.
That would be a good thing to teach families as basic training for OpenNotes, eh?? “Don’t be concerned if you see ‘cannot rule out’ – it’s a common practice”?
Perhaps for all record access through the portal. Because as you know radiology reports have always been available to patients. OpenNotes is the addition of the physician office notes.
That’s exactly what I meant (I think) – anyone getting introduced to “open notes” (lowercase) should be coached about not freaking out at the occurrence of words. Same issue, I think, as when people first look at lab results and may be concerned about numbers in red that aren’t really a problem.
Great thoughts. Maybe you can pitch it to BIDMC. And you could create that material. Good luck.
Danny,
I am curious about your work with Open Notes. Specifically I am interested in the motivations of patients that use “doctor’s notes.” What for example is the relationship between a person’s level of trust in their provider and use of doctor’s notes? I for example have little interest in what’s in my doctor’s note as long as I get copies of my lab and radiology test results…and I am as involved in my care as highly engaged folks.
What would be interesting is to include some doctors and patients involved in Open Note in the research component of the Adopt One! Challenge. It would interesting to look at the difference in exam room conversations to see if and how patient use of doctor’s note affects how doctors and patients talk with one another during office visits. Another interesting test would be to see if offering access to Open Notes actually increased patient use of patient portals whic presently languishes at <10%.
Like your question about the wisdom of sharing Radiology reports with patients…I am not sure about how sharing doctor's notes improves patient outcomes for the average person.
Steve Wilkins
Mind the Gap
Good questions, Steve. But as e-Patient Dave and others have found out, the test results don’t give the whole story. The real information is locked in the clinical narrative. It is there that one finds the clinical decision making and thought process, the real medical issues, and the development of a care plan. For some situations all that matters may be the test result (in which case we might ask if the visit was really necessary) but in many cases the note contains the real content.
I am not one of the OpenNotes investigators, just a subject. I suggest you reach out to them through the MyOpenNotes website.