Advice To Imperfect Patients Dealing With Imperfect Clinicians
In the post, Squeaky Wheel, Tiffany at sick girl speaks describes three examples of severe breakdowns of patient-clinician communication relationships and concludes with this advice:
You are one of many, many people that a doctor sees during the course of their day. Unless your case is incredibly unusual or acute, it is very unlikely that you will be at the front of their mind. They will revisit your case only when the lab work returns (for example) and it will take some time to refresh their memory. If you aren’t “bothering” them, you are much more likely to be put at the bottom of the stack. That can mean a long weekend of worry, an unattended discomfort or possibly even worse.
She goes on to postulate that the most effective stance a patient can take vis-a-vis ones doctor is that of “a humble, polite, persistent squeaky wheel.”
Squeaky Wheel is representative of the other entries on this blog, each post focusing on managing a different aspect of living ones life while also managing ones disorder and treatment.
Her recommendations and vignettes are based primarily on her own experiences as a patient with a chronic disorder (Cystic Fibrosis), undergoing extensive treatment, including not one but two double lung transplants. who has inevitably dealt with many healthcare professionals over many years.
Commentary
As a physician and as the spouse of a woman who was treated for cancer over a 20 year span, including multiple surgeries, hospitalizations, and renal dialysis, I’ve been struck by the impression that among long-term survivors of a chronic disease, there seems to be a disproportionately large number who are also aggressive, knowledgeable, cynical, hypervigilant, and, all too often, embittered from too many battles with the healthcare professionals.
I hasten to emphasize that this is, indeed, only an impression, and I have no scientific evidence of such a trend. And, I am aware that “squeaky wheels” do engage more than their share of attention so that group may stand out in my mind. For what it’s worth, conversations with oncologists, nephrologists, endocrinologists, and others who treat large populations of chronically ill patients indicate that they see a similar pattern.
Regardless, one wonders if such a style of dealing with life in general or, at least, with the healthcare establishment might not increase ones chances for survival.
The approach to healthcare Tiffany advocates, i.e., being “a humble, polite, persistent squeaky wheel,” seems a modulated, less miserable version of the caricature I describe. And, while that model also lacks research-verified support, it is intuitively appealing and appears a rational approach to the patient role.
Reading this though a clinician’s eyes, it seems almost inescapable that, unless claims of perfection are maintained, a physician has an obligation, at a minimum, to accept and attend to patient-initiated interventions of the sort suggested by Tiffany without defensiveness. And, it could be argued that healthcare professionals have the responsibility to make it explicitly clear to their patients that “squeaky wheel” behavior on their part is not only tolerated but expected and encouraged as a strategy to lessen the risks of untoward outcomes resulting from those inevitable errors wrought by a clinician’s forgetfulness, too-busy schedule, or just the limitations of being human.
I find much to admire otherwise about this blog’s perspective. Panaceas and magical solutions are eschewed, clinicians are presented as fallible but not necessarily villains, and a version of patient empowerment is promoted that is predicated on pragmatism rather than political principles.
I believe this material could prove helpful to patients. I’m certain, however, that clinicians could benefit from considering such a point of view. The availability of blogs written by those who have survived serious disease and serious treatment for extended periods is an invaluable opportunity to garner the patient’s perspective from a much different point of view than that we may see in office visits or during hospital rounds.1
Footnotes
- Other blogs that offer a thoughtful patient’s perspective have previously been discussed in The Misdiagnosed Patient and You have to take your meds. Period. You do not negotiate.↩