Affairs of the heart

heart stethoscope

It’s been a rough week. My wife had heart surgery at Brigham & Women’s hospital in Boston on Monday to correct for a longstanding problem. My 17 year-old son had a resurgence of a potentially threatening kidney problem he had in 2001 that warrants careful monitoring of his situation at Children’s Hospital of Boston. And so I have moved from being a highly supported global traveler to living the ordinary life of a caretaker meandering through the processes of two large healthcare providers. I have found this to be good for my soul, but bad for my blood pressure.

Of course, both institutions are world-class and their doctors top-notch. So what am I complaining about? Well, my grief is that I’d like to participate in the process, maybe even add value to it. You see, I happen to know my wife and my kid pretty well, including their medical history. More importantly, I love them and want to advocate for them. This seems to make me into the meddler, the guy with stethoscope envy, who’d like to be a doctor, but only plays one on TV.

The healthcare industry is focused on setting up electronic medical records (EMR in the jargon). As for me, I’d just like to have access to the darn records, whether they’re electronic or drawn as Mickey Mouse cartoons on the back of a filthy envelope. The first thing I want to do is shepherd them through and make sure they land where they’re supposed to. I’ll carry them to downtown Boston on a donkey if that’s what it takes. And by the way, I also have a computer and have been properly trained on how to attach documents and pictures to emails. All I’m missing is a couple of doctors’ e-mail addresses.

For example, some of my kid’s lab results generated in Concord on Monday needed to be at Children’s Hospital on Wednesday for an important diagnosis with a nephrology specialist there. I called several times to make sure the records would be there and was assured they were. Sure enough, the nephrologist didn’t have them when I visited with my kid, so we ended up wasting the specialist’s time at Children’s and will have to redo some of the stuff. Because I care, I would’ve been willing to spend a lot more time than any expediter in the system, so put me in charge please! It’ll be cheaper for my cost-conscious healthcare providers and I’ll stop bugging the attending nurse over it. As for me, I’ll quit chewing my nails.

And now for the scary part. If you give me transparent access to the records of those I care about, I’ll want to participate in the co-creation of the diagnosis and the treatment. My wife had a slightly elevated temperature after the operation. Because I know her temperature is quite low naturally, the elevation was more significant than for an average patient and I tried to get the nurse to pay attention to this. Because the absolute magnitude of that temperature was deemed too low for intervention in “The Great Book of Medicine,” it was suggested that I take a deep breath instead.

As I’ve also learned, getting patients to walk after a heart operation is a key component of getting well. Since nurses work in shifts at the hospital, nobody had a longitudinal record of her physical activity. At some point, her nurse had too many patients and the neighboring nurse not enough, so they literally ended up pulling names out of a hat to see who would be redistributed. My wife’s name was drawn. I’m not sure whether the new nurse was better or worse than the old one, but it provided an apt metaphor for the lack of continuity and personal identification with the patient’s experience.

To create this continuity, my daughter and I decided to write on the white board in the hospital room what my wife had accomplished and how much she still needed to do. This initiative was deemed “very cute” by a couple of amused doctors and nurses. As for me, I think I’m helping her get well, maybe not quite as much as the brilliant surgeon who held the scalpel or the world-class cardiologist who dispenses the medicine that keeps her heart pumping day after day, but we’re there nonetheless.

I have to leave you now. My wife’s coming out of the hospital today and I have to go get her. I’ll have to go to weekly tests with my kid for the foreseeable future, but he’s in good hands. The doctors, the nurses, my daughter and I, we’re a heck of a medical team.

Tags: ,

2 Responses to “Affairs of the heart”

  1. Larry Irons says:

    Francis,

    My thoughts are with you and your family. I’ve seen the issues your post points to in my own family’s experience with hospitals. We need healthcare 2.0 badly, but as you point out just making records electronic is barely a half step.

  2. GOUILLART PASCALINE says:

    Bonjour Mr Francis Gouillart

    Je vous souhaite à vous et toute votre famille une excellente année 2010 une meilleure santé pour votre femme et votre fils et j’espère que votre coeur sera rempli de joie et de bonheur.

    Est-ce vous qui, il y a plusieurs année, nous aviez contacté pour trouver de la famille en France?
    J’avais envoyé 2 lettres sans avoir de réponses donc j’ai laissé tombé mais cela fait un petit moment que j’ai eu envie de chercher sur internet. Avez-vous trouvé de la famille dans le Nord -- Pas de Calais?
    En tout cas je vous renouvelle mes voeux de bonheur et p
    eut-être à bientôt sur le web

    Pascaline Gouillart

Leave a Reply