March 2008


One of the more compelling, and deceptively simple, instructions that I’ve tried to live by is to “pay it forward”: to keep a good deed moving forward and outward, benefiting others just as you have benefited. Call it creating good karma, or being a good member of human society, or just trying to make the world a little bit of a better place, if you will. I had a long talk tonight with a friend who has been going through some rough times, and it reminded me of how much it meant to me to have had someone to talk to who knew what I was going through back when I was experiencing some of the same things myself. For the friend who helped me through, I’m paying it forward: I hope it made a difference tonight.

Somehow thinking about this tonight reminded me of one of my earliest memories, which is maybe my first conscious memory of someone doing a kind thing when they didn’t have to – very early in the interlinking chains of good deeds I have to pay forward in this lifetime. When I was about four, my mother and I went to visit my maternal grandmother in Chicago. It was on that trip that I met my best and longest friend, Bunny (once a plush Peter Rabbit, but now a she who got too toasty in the blue coat and prefers to go without). Grandma, Mom, Bunny, and I all went to a very elegant lunch at the Palmer House Hotel, which of course was a very grown up occasion. As we remember it, partway through the meal little four-year-old Miya marched up to the waiter and informed him that “my bunny is hungry and would like a carrot.” Moments later, he returned to our table… with the biggest, orangest, most beautiful carrot I had ever seen on top of a crisp lettuce leaf, served on the Palmer House’s fine china. I bet he never suspected that that one kind, unnecessary gesture would still be remembered by a once-four-year-old girl who is about to turn twenty-four, and that she thinks of it every time she needs to remind herself that there is abundant goodness in the world. He’s out there somewhere, and maybe someday he’ll walk into my clinic and I’ll treat his disease… or his daughter’s, or her best friend’s, or her best friend’s kindergarten teacher’s, or someone who once gave him an extra large tip. I have faith that – as interconnected as we all are – I can somehow contribute to the pool of good works that helps him and everyone else in society to be happier and healthier. And while I’m doing that, however remotely and indirectly, I’ll also be paying it forward.

I’m excited to say that my research from my summer fellowship at the National Institutes of Health: National Institute of Neurological Disorders and Stroke has just been published. My work from summer 2004 actually also got published a few weeks ago and I just found out about it a few days ago, so it has been a good week for me CV-wise. Even though I don’t plan to pursue much basic research as part of my career, it is great to have official recognition of the efforts I have put into research. More importantly, the way scientific research is set up means that if research is not published, it might as well never have happened, because no one will know about it much less be able to learn from and build upon it. So having these two publications out there means that I have actually made a small, small contribution to the enormous enterprise that is science.

Goldstein DS, Holmes C, Sato T, Bernson M, Mizrahi N, Imrich R, Carmona G, Sharabi Y, Vortmeyer AO. Central dopamine deficiency in pure autonomic failure. Clin Auton Res. 2008 Mar 24; [Epub ahead of print] PMID: 18363034 [PubMed - as supplied by publisher]

One of the things that I have found hard about research work is the lack of immediate results as far as providing some benefit to some person in a tangible way; instead, it is the combined efforts of thousands of scientists each contributing their piece of the puzzle that eventually leads to knowledge and, sometimes, breakthroughs and advances in treatment. Fortunately, this particular research project came with a name and a face already attached to it: Ms. B (I actually know her full name), a patient with pure autonomic failure (PAF) who allowed the NIH to study her for many years before her death and then to perform an autopsy and gather the tissues that would ultimately make this research possible. It was an incredible gift. As I have described in the explanation of the title Emergence on the “About This Blog” page, it is important to me to keep in mind the stories behind the diseases. So while Ms. B was literally turned into a series of numbers as we extracted and quantified proteins and enzymes from her tissue samples, the paper also tells her story. (Note: the excerpt below is the version from my poster, not the article, for authorship reasons). It’s the clinical story, but it’s not hard to read the story of tragedy and generosity floating so close to the surface.

The PAF patient was a 73-year-old woman with well-established PAF. She had persistent, consistent, severe, symptomatic orthostatic hypotension for at least 25 years and she was bed-ridden for eight years before her death. She also suffered from dry eyes and mouth and hypohidrosis. Evidence of postganglionic noradrenergic failure included markedly decreased plasma levels of NE and its neuronal metabolite, dihydroxyphenylglycol, and cardiac noradrenergic denervation, revealed by both a low rate of entry of NE into the venous drainage of the heart and by virtual absence of myocardial 6-[18F]fluorodopamine-derived radioactivity. She had no tremor, difficulty with handwriting, slow movement, or difficulty initiating movement. Neurogenic bladder (chronic urinary retention) led to chronic nephrolithiasis and pyelonephritis and necessitated chronic Foley catheterization. Urosepsis, probably related to autonomic bladder dysfunction, contributed to her death. An unrestricted autopsy was performed at the NIH after a post-mortem interval of 10.5 hours. Postmortem histopathology demonstrated abundant Lewy bodies in the locus ceruleus and neuronal loss in the SN, with rare SN Lewy bodies.

At the same time he sent a pdf of the published paper to all of the authors, Dr. Goldstein also asked that a copy be sent to Ms. B’s family. I can only imagine what they must feel like, knowing that their loved one’s gift has finally come to fruition in the form of new insights about her disease and a related disease, Parkinson’s, that affect so many. May her gift contribute to new advances, through research, that will someday help others like her.

I had the unique opportunity to shadow a nurse this morning as part of my clinical skills class, where we are wrapping up the year with brief tastes of surgery, pediatrics, emergency medicine, and other specialties and settings to which we have not been previously exposed. She was part of the maternity unit, which was great to see, although it certainly reinforced my conviction that pediatrics is right for me since I was paying much more attention to the newborns than to the moms.

It was a valuable chance to gain some perspective on what roles nurses actually play in patient care (answer: many, and important ones) and see what her day was like. But beyond just getting a chance to observe, I benefited from her being frank and philosophical about her profession. I asked her what the hardest thing was about being a nurse, expecting her to say something like working with difficult patients, witnessing individual and family tragedies, or having to perform tasks like cleaning up after patients who lose control of their bowels. Instead, without a pause she introduced me to the phenomenon of “nurse guilt.” The hardest thing for her, she said, is that every time she is with one patient she cannot be with her other patients; if someone pages her and she doesn’t leave then she isn’t caring for that other patient, and if something urgent happens and she does leave then she is taking herself away from the first one. (Compare this constant juggling and balancing act to the physician or medical student’s “snapshot” model of checking in on each patient once or twice a day without having any idea what has been going on in the hours that I have been gone but the nurse has been caring for the patient.) Caring for the patients in every sense of the word is so deeply ingrained into her and such a big part of her identity as a nurse that she feels guilty when she can’t be there for everyone and tries so hard to take care of all of her patients, sometimes to her own detriment. I watched a perfect illustration unfold as the nurses gathered to shift patients to another nurse just starting her shift. All the nurses, including the one I was following, had been running around busily all morning keeping up with the myriad things each patient needed; the nurse I was following still hadn’t had time to sit down and eat her breakfast, and by now it was almost lunchtime. Yet each nurse struggled as she looked down her sheet to pick the patient she would hand off, saying about each “oh, she’s having such a bad time, I want to stay with her” or “she’s going to be a lot of work, I wouldn’t want to push her off on someone else” or “but she’s so lovely!” Even the most overloaded nurses had a hard time giving up any of their patients.

A corollary that my nurse alluded to that I think is the most important lesson I got out of the morning, related to the fact that nurses are the ones who execute the orders that doctors decide on, but that this can create problems given the aforementioned “nurse guilt” – their dedication to each patient. She gave the example of doctors who order that particularly sick patients have certain signs checked every two hours, but that in order to take care of all her patients she may not be able to do it until three hours have passed. She’s already going to feel guilty because she wants to provide the best care and knows that two hours would have been better for the patient. Furthermore, I can easily imagine being that doctor and pulling up the chart, seeing that three hours had gone by, then carelessly berating the nurse for not following the order and for providing substandard care. For someone who is so dedicated to her patients, that insinuation would be both insulting and crushing.

The most common advice for medical students on the wards that I’ve picked up from older students and residents is to get on the good side of the nurses you are working with: they can make your life on the unit heaven or hell. While I’d like to think that I would already be inclined to be respectful of the nurses (intentionally avoiding still-very-prevalent doctor chauvinism), getting greater insight into the nurses’ “psyche” helped me see how the structure of the hospital system could reinforce the rifts between physicians and nurses and how some empathy for their position can help me value their contributions to the patient’s care and to the team’s understanding of the case and avoid the pitfalls that the “snapshot” role brings.