|
|
Patient B's Story
If I hadn't found my current endocrinologist I doubt if I would be functioning any near where the level that I am today. After two cancers (one being thyroid) and severe chronic pain from a second herniated lower lumbar disk (all before the age of 40) I also ended up with severe health problems symptomatic of severe hyperthyroidism. My former endocrinologist had retired and because of my multiple health problems I let my trustworthy oncologist monitor my thyroid levels. For no clear reason my formerly stable thyroid levels went haywire. Once the numbers got under control and the symptoms didn't my oncologist, a competent, responsive and caring woman, didn't know what to do and didn't think it was thyroid related. I ended up seeing a gastroenterologist, a cardiologist, another oncologist, and a highly recommended internist/GP. After a series of test revealed nothing all of these doctors diagnosed me with depression and started referring me to therapists and psychologists, even though I was already in psychotherapy and my therapist agreed with me that my problems were not of a psychological or emotional nature. I asked for an endocrinology referral and thankfully I found my current doctor. I can't describe the relief I felt when after describing for the umpteenth time the same symptoms her response was, "Yes I believe that all could be thyroid related even with your numbers." But even after months of lab work and superfine tuning of my Synthroid levels I still wasn't much better I asked to be put on a T3/T4 combination. Here's my recollection of the sensitive negotiations:
Dr: Yes I've read the study and I am not convinced that the research was adequate to prove the efficacy of the use of T3/T4 rather than T4 alone.
Pt: You are aware, though, that there are a subset of patients like myself that are not responding well to T4 alone, right?
Dr: Yes, I know that but if the study had involved a larger amount of patients over a much longer period of time and looked into potential long-term side effects maybe then I would be convinced.
Pt: I appreciate you letting me know your concern about the possible inadequacies of this initial study and I want to stress to you that I have already lost four years from my health problems and I'm not willing to give more time from my life in order to wait for definitive proof when I need help now. Though I respect your medical and professional competence as well as skepticism, it is my life and well-being that is at stake here and I'm willing to try something new. We both have agreed that for whatever reason I'm not responding well to traditional treatment with Synthroid and I need to know if you are willing to cooperate with my request for treatment you consider controversial.
Dr: Yes, I will.
It has been 3 and a half years since that conversation and since starting the T3/T4 combination. I am also being treated with acupuncture and herbs by an acupuncturist who coordinates care with my allopathic treatment. Both cancers continue to be in remission, my thyroid levels are still being fine tuned though my level of functioning has skyrocketed. I am currently attending graduate school full time as opposed to not being in school or working when I first saw this new endocrinologist. I have no doubts where my health and quality of life would be if I hadn't found a doctor willing to communicate respectfully with me and accommodate my participation and insight into my own health and treatment.
The above conversation took place in front of a disgruntled medical student who had actually argued with me over my unwillingness to take advice from him when he clearly had not read my medical chart or knew what kind of person I was. His level of disregard and disrespect for me as a competent adult patient was annoying, unethical and a waste of my time and energy. I hope he learned something: I hope someone else will, too.
***-- Patient B
Narratives Committee Commentary on Patient B's Story
Patient B is quite literally sick and tired. She is also frustrated and angry. Despite apparent control of her thyroid function by standard laboratory function testing, she remains symptomatic and disabled. Physicians who interpret her situation through a biomedical lens only assume that if Patient B's numbers are in good range then she must be feeling fine. If she isn't, then either something other than her thyroid is malfunctioning or a psychological problem is superimposed. This interpretation fails to acknowledge or incorporate Patient B's experience of her illness, literally leaving her "out of the picture." The unsuccessful consultants were not necessarily bad guys. The oncologist was "competent, responsive, and caring," and others were willing to listen to Patient B, and to take seriously her symptoms and concerns. However, they were unable to take the next step - including Patient B as a knowledgeable partner in her own health care.
Patient B uses excellent communication skills in her approach to the endocrinologist. She is able to approach the doctor in an assertive, yet respectful and non-threatening manner. She asks her endocrinologist about a study she has read regarding a controversial treatment. Rather than reacting with frustration and anger to her doctor's initial reservations about the study, Patient B seeks common ground. She finds it in their mutual agreement that, for some undefined reason, Patient B is not responding well to traditional treatment. Clinical medicine is fraught with uncertainty, a fact that physicians often share among themselves, yet feel quite threatened when patients point it out to them.
Patient B seeks to build a partnership with her doctor. She acknowledges her doctor's concerns about the study and expresses respect for her "medical and professional competence as well as skepticism." While acknowledging her doctor's expertise, Patient B brings her own personal expertise into the relationship. She conveys her knowledge about the experience of her illness and the impact it has had on her by saying, "I want to stress to you that I have already lost four years from my health problems and I'm not willing to give more time from my life in order to wait for definitive proof when I need help now...it is my life and well-being that is at stake here and I'm willing to try something new."
What does Patient B's physician do that makes this particular relationship successful? It appears that she was able to acknowledge the discrepancy between the medical data and Patient B's experience without discounting the latter. Perhaps she weighed the risks of using the treatment Patient B requested (potential adverse effects, lack of strong supportive evidence, not "standard of care") with the potential benefits (maybe it would work, patient feels so strongly about trying it, that doing so would probably be necessary to preserve this patient-doctor relationship). We don't know if Patient B's doctor set aside her biomedical interpretation of the data, but it appears that she was able to give Patient B's experience equal weight in her decision-making. This requires respect for the patient. It also requires a willingness to share control of the decision making and some relinquishing of control in this relationship. Notice that Patient B doesn't ask, "I need to know if you are willing to work together with me." She says, "I need to know if you are willing to cooperate with me." This subtle shift in power and control is not currently the paradigm of the patient-doctor relationship as we know it in the U.S. and remains difficult for many clinicians.
Finally, we have the "disgruntled medical student" who didn't "know what kind of person I was" and evidently didn't try to find out. Most students enter their medical training with sensitivity and compassion, only to have those virtues attacked on all sides by the medical culture they encounter. This student was fortunate to have a preceptor in the endocrinologist Patient B describes. We hope that the student learned from her openness and her sensitivity. Perhaps some time later, this student will also reflect upon Patient B's abilities to negotiate her way into a successful healthcare partnership.
AAPP Narratives Committee
Beth Lown, Jack Coulehan, Susan Massad, Paul Haidet, Mary Shomon, Sandra McCollum, Margaret Vulgaris |
| |
