The following was an extremely positive exchange I had with one of the infectious disease (ID) specialist physicians on my “team” at the medical center where I am a patient. He has followed me over the past two years, though only while an inpatient. I have always been confident that he is a knowledgeable doctor and very nice man, but our conversations have historically left me feeling defensive and distrusted. After one particularly rough encounter, I opted to write him a letter explaining how his approach affected me; the letter and the subsequent e-mail exchange are copied below (with a few changes to protect privacy) as an example of how we, as patients, can give our medical team members the benefit of the doubt, and end up with a stronger partnership, renewed trust, and greater understanding of those involved in our care.
Feel free to use my letter as a resource for patient-physician communications; I am also available to help with wording and style issues offline, should anyone out there ever need help in this sort of situation. Not that this exchange is perfect, but (I think) it does provide a good look into assertive (rather than aggressive) problem-solving. (Others may feel free to disagree and make recommendations for future communications.)
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December 11, 2006
Dear Dr. Houser,
Frankly, I don’t know what to say anymore. I don’t know how to respond when you “ask” things like, “well, this isn’t a total surprise, is it?” or, “do you have an explanation for this one?” Really, these aren’t questions—they’re shame-inducing commentaries that cannot possibly foster a positive adult-to-adult physician-patient relationship. They are unproductive and humiliating, not to mention completely unwarranted.
Yes, we talked about the potentiality of infection, and the amplified consequences of it happening with an implanted port versus a PICC. We talked about my susceptibility to line infections, and how PICC lines were easier and safer to remove. But I am finding it increasingly difficult to deal with the implication (or, I admit, possibly inference) that somehow these infections are direct consequences of poor decision-making on my part, or somehow my “fault,” rather than unfortunate biological occurrences for which no one can be blamed. I am not a flighty person; I am not medically ignorant; I do not make life-affecting choices without serious consideration and long discussions with my husband as well as medical professionals. Yet I often feel as though, in your sincere attempts to repeatedly educate me about the risks and alternatives, you reserve the right to an “I-told-you-so” by virtue of the fact that I have chosen something you’ve never chosen—nor likely ever had to choose—for yourself.
Part of the issue here is semantics: the basic terminology you tend to use makes me feel like somehow you believe my line infections are my fault—that I am careless, or make foolish choices, or take unnecessary risks, or even have some manifestation of Munchausen’s Syndrome. Something as easy as saying that I am susceptible to infections, rather than that I have a tendency to get them may seem like a small thing, but susceptibility at least blames my body and not me as a person. I take impeccable care of my lines; I cannot “explain” why I get infections. So when you ask if I have an explanation, what kind of response do you expect? It’s an unanswerable question, and to ask it as if I should have an answer implies that I am aware that I’m doing something to reinfect myself, intentionally or otherwise. It’s a downright humiliating way to be addressed. When you make comments about my “tendency” to get infections, and ask for explanations of the inexplicable, I feel like you are punishing me for wanting to continue living a full and active life in the face of a chronic illness. I understand that rafting the Colorado River isn’t a recommended activity for TPN patients; but did you notice I came back free of infection for another three months? I do not take part in such adventures recklessly or often; but occasionally I will do something that pushes myself beyond “easy.” It is not a decision born of carelessness or reckless abandon, but one of personal challenge and growth. And yes, my life is richer and fuller for having pushed my limits at the bottom of the Grand Canyon in a way so few people ever have, rather than staying at home, isolated and afraid, but “safe.” Yes, I could probably find a decent work-at-home job, and maybe even get some help by claiming disability; I could live in a little semi-sterile cocoon and never leave it for fear of contamination. But that is not who I am. I know that there is a chance that I could die from one of these infections; but I am determined to live until I die, and not die a slow, empty, lonely, but “protected” death.
Also, in discussing this issue with other physicians in fields ranging from general surgery to infectious disease to critical care, the overwhelming consensus is that my PICC lines have actually lasted very well. The average lifespan of a PICC is three weeks to three months, and it is widely accepted that the risk of infection increases in direct proportion to the length of time a PICC is in place. So I am not some medical anomaly, as you have often implied; PICC lines get infected, usually within three months. My ability to maintain a PICC line for four to five months at a stretch should be applauded, not chastised. According to every other medical professional I have consulted about this, I actually have a damn good track record. So I’m not sure what else you expect of me.
I’m sure you treat numerous chronically ill patients. But please be clear about this: I AM NOT ONE OF THEM. I am an active 34-year-old woman. I am a full-time professional. I am Senior Editor and Senior Writer for a film review website. I am a writer, editor, and publisher of several books. I am a Grand Canyon river-rafter, an international traveler, and a damn good croquet player. I happen to have a chronic illness, but it does not define who I am, and it never will.
I know that you are looking out for my best interest; that is why I am making the effort to communicate this to you. I also know the risks of TPN, central lines, infections, and sepsis. I have seen them where I work, and I have lived them. So please understand—I don’t need you to remind me that you warned me about the risks. I don’t forget that quickly. I need you to partner with me so that I can live the life I want to live for as long as I am able to live it. I may make choices that you would not, but that doesn’t mean that my choices are foolish or reckless or wrong. They are always well thought-out, with all the appropriate precautions taken. I am actively alive, and I plan to stay that way.
Basically, my questions for you are: can we work as partners in this, where you encourage me to live the best life I can in the most prudent way possible? Can you accept that the risks I do take are not careless, but intelligently planned and just as crucial to my well-being as TPN? If you are willing to join me as a partner in my care, rather than use shame and suspicion toward who knows what end, then I am happy to continue working with you. If, however, you are unable or unwilling to help me live the live I need to live, then for both of our sakes, I will request the services of one of your colleagues.
I do appreciate you, Dr. Houser. But the way you have approached me recently is not conducive to my well-being, and I need a Medical Team that can support me and help me do the things I want to do in the safest way possible, not dictate what I should or shouldn’t do, and pass judgment on me for staying vibrant and alive despite my illness. Can you be part of that team?
Sincerely,
Jennifer M. Wright
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Subject: RE: Your letter
Date: Mon, 11 Dec 2006 12:15:30 -0800
Dear Mrs. Wright,
I was surprised and ashamed to receive your letter just now. You have misconstrued my discussions and questions and I must bear most of the responsibility for that. I don’t usually perceive that I’m ineffective in communication, but obviously that’s not been the case in our relationship.
First, I have no concern that you are “to blame” for your line infections. As a physician who has gratefully cared for HIV patients and active injection drug users for over 25 years, I have never found it appropriate to judge my patients in that manner. In fact, I do not consider that a part of my job even for the patients I have cared for who do have self-induced disease. That does not, however, mean that I will not actively give you my best recommendations for avoiding medical problems. My asking you if you knew of a predisposition to your recent series of infections is not meant to be anything other than investigative: PICCs can migrate, condensate can form under dressings, etc. Your earlier PICCs did have excellent dwell times, which is why I’ve favored PICCs for you in the past. Please also remember that this last episode may not have been another infection but a relapse of the prior infection; we can’t distinguish these two in this instance.
Do not for a moment believe that if I give you medical advice that you are bound to take it. Ironically, before I received your letter I had been discussing with Dr. Raker what vascular device would be most appropriate for you. I explained to him that any device accessed on a daily basis might have the same risk of infection with time, but that your desire for a Port was worth respecting, even if the consequence and danger of an infection Port may be greater than an infected PICC. Unfortunately, there are no published studies that compare infection rates in devices that are used for daily TPN, regardless of your information from other physicians. But after explaining this to Dr. Raker, my comment was “The patient should have say in what kind of device she gets.” This because, as you note, you know all this stuff and can make a very informed decision. Please feel free to confirm this conversation with Dr. Raker if you would like.
I applaud your commitment and effort in pursuing a normal life. You have succeeded in accomplishing many things that do represent a risk for those who have indwelling catheters. Although there is again no medical literature to cite, I suspect the greatest advantage of a Port might be that if it is unaccessed for short periods of time, the infection rate would diminish substantially during that period (that’s why Ports used only for monthly chemotherapy access have low infection rates). This might allow you to engage in activities that might be more dangerous with a device like a PICC or Hickman that would potentially allow contamination from outside unrelated to accessing the device. But if you need me to be a physician who will not tell you exactly what I think, you need to find somebody else. I was very happy that you pulled off the Grand Canyon, and I’m sure you’ll consider that a victory (as well you should) for the rest of your life. But don’t expect me to hold back on sharing with you any reservations I might have about that or any other adventure. My job is to make recommendations; I don’t think I can either make decisions for you or feel any less respect for you if you don’t take my advice. You are the one living your life, and any physician worth a hoot will know that.
In another irony, I thank you for your invitation to remain on your healthcare team. However, I will be leaving the medical center in March, so my participation will be short-lived, but if I can help at any time feel free to call. You have been quite responsible in caring for your condition, especially in prompt recognition and reporting of infection. Please don’t let my failure to assist you satisfactorily impede your continuing prompt reporting of problems.
Again, I apologize for making you feel devalued. I wish you the best with your next Port and beyond.
Best regards,
Dr. G.I. Houser
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Subject: RE: My letter
Date: Mon, 11 Dec 2006 15:15:30
Dear Dr. Houser,
I am overwhelmingly grateful for your reply. It is apparent that it was not only immediate, but thought-out and thorough—I certainly appreciate the time and attention you gave this.
First, I sincerely apologize for my misinterpretations of your comments and questions. I often feel on the defensive when I am inpatient, since so many people question so many of my symptoms so often in so many ways. While I know (rationally) that their questions are honest and straightforward, after awhile it starts to feel as if they are questioning my integrity or my own knowledge of my body. As a result, I am obviously inclined to misconstrue just about anything. It takes two to communicate—and to miscommunicate—and I earnestly apologize for my part in that miscommunication.
Now that I can interpret our previous conversations in the proper context, Greg and I would honestly prefer to continue with you as part of our team—I am confident now that not only will I continue to understand where your questions are coming from, but that if I feel like I’m not “getting” it, I can ask you directly without reservation.
Second, please know that I genuinely appreciate your medical opinion, and truly respect and honor it. Obviously you have played a crucial role in my well-being, and Greg and I are profoundly grateful. The knowledge that I have outright misunderstood our conversations in the past makes me confident now that our continued partnership will be more fruitful than I have as yet allowed it to be. I apologize, too, for allowing my misinterpretations of your questions to override my typical forthrightness regarding my medical status. Should I require your services before you depart the medical center, I can assure you that our conversations will be more two-sided and candid.
Thank you, again, not only for your prompt and honest response, but for showing me such respect as a patient without minimizing your role as my physician. I expect and want you to express your professional and knowledgeable opinion, which I recognize is sincerely in my best interest; and whether we agree or not, I will know that we’re still a team. I hope that I have not offended you by addressing this—I certainly have no intention of shaming you. I am just glad that we were able to get beyond it, even if only until March.
Teammates?
Jenn
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Subject: RE: Your letter
Date: Mon, 11 Dec 2006 18:15:30 -0800
Done deal. Hopefully the next ten days before the Port won’t be a problem.
Don’t feel ashamed feeling you’re in a fishbowl when you come into the hospital. The “labeling” phenomenon does occur, but my guess is that it’s a result of loss of control. Doctors get terribly frustrated when they can’t do what they yearn to do with 100% success: help folks.
Feel free to use this email any time (that’s why the address is on my card).
gih
