Popular TV doctor, Gregory House’s favorite adage about patients is: “everybody lies.” I used to believe that this was a cynical and inaccurate statement, but I had to revisit it recently when faced with a patient whose signs and symptoms were consistent with a diagnosis that she vehemently denied.
A young woman was admitted to my rehab unit with brain damage of unclear cause. She adamantly denied drug or alcohol use, and I couldn’t help but wonder if she was suffering from a genetic or autoimmune disorder that the academic neurology team had somehow overlooked. I had recently read the New York Times best-seller, Brain on Fire and feared that I would be like one of those dismissive physicians who missed the author’s unusual diagnosis and nearly killed her from their inaction.
But staring me in the face were the specific physical manifestations of drug and alcohol abuse, though her urine toxicology screen proved she hadn’t used in the very recent past. I asked her again and again if she recalled any exposure to them – probing for an admission of even a small amount of recreational use. She remained adamant. An exhaustive work up had in fact revealed some vitamin deficiencies, the only hard evidence of anything that could explain her very real and devastating impairments. This was not a case of faking symptoms – at least I was sure of that much. Yet her situation continued to haunt me, because until she came clean about the cause of her condition, lingering doubt would drive me to continue the “million dollar work up.”
And for this young and desperately lonely person, the “million dollar work up” may have been her only chance at experiencing ongoing concern for her well being from others. If she admitted to drug use, then the only people who seemed to care about her (sadly, even if it was mostly because she could make a “great case for Grand Rounds”) would probably turn their backs. With the mystery solved, this fascinating neurological conundrum would become a garden variety drug abuser. A person who was, perhaps, not so much a victim as a perpetrator of their own condition.
I don’t believe that those whose conditions are contributed to by their behaviors receive poorer medical care (consider the smoker with lung cancer, or the person with multiple fractures from a bridge-jump suicide attempt – their quality of care will be similar to non-smokers with lung cancer or people with orthopedic needs from a motor vehicle accident). But there may be a subtle and unspoken judgmental attitude held by some of their caregivers and providers.
Fellow friend and blogger, Kerri Morrone Sparling suggests that fear of judgment, and the guilt and shame associated with self-induced harm, are the main reasons why people with diabetes may not come clean to their endocrinologists about their eating and exercise habits. She writes,
Finding enough confidence in myself to admit my shortcomings to my doctor, who I aim to impress with my efforts, was a tall order. For me, it took finding an endocrinologist I trusted with the truth, including the parts of the truth that weren’t so pretty. I know the best doctor for me is one who cares about my emotional response to diabetes, as well as my physical response. It took some trial-and-error, but eventually I found an endo who I felt didn’t judge, but listened and helped me find reasonable solutions to my problems with “reasonable” defined as something I would actually follow through on. Instead of a blanket response of “Do everything. Try harder,” my endo helps me build off of small successes in pursuit of better outcomes.
So patients lie to their doctors because they don’t want to be abandoned, judged, or shamed. And until they are quite certain that this will not happen to them, they are likely to continue withholding information from those who are ostensibly trying to help. The problem of lying does not rest squarely on the shoulders of patients – it is also the responsibility of physicians to make it safe for them to tell the truth. They will commit to honesty when we commit to compassion.
As I look back at my interactions with the young woman with the “mystery” illness, it is not so much the fear of missing the right diagnosis that haunts me now. It is that I did not make her feel safe enough to tell me the truth. In the end, the “million dollar work up” offered her little value for the cost and used up precious healthcare resources.
What she needed was a safe place to live, a supportive environment, a program for drug counseling, and job training for those with disabilities. I missed out on really helping this patient because I was more comfortable with searching for a rare diagnosis than pursuing treatment for the all-too-common, nebulous cycle of social ills that poverty, drugs and abuse cause. Maybe I wanted to believe her lie because at least then there was a chance I could fix her?
As it turns out, I was as invested in her lie as she was – we just had different reasons for it. While she did not want to be abandoned or shamed, I did not want to have to face the fact that I had very little to offer her.
Dr. House was right – under certain circumstances, patients are likely to lie. The other side of the coin, though rarely discussed, is that sometimes doctors are complicit in keeping those lies going.
I am a regular reader of patient blogs, and I find myself frequently gasping at the mistreatment they experience at the hands of my peers. Yesterday I had the “pleasure” of being a patient myself, and found that my professional ties did not protect me from outrageously poor bedside manners. I suppose I’m writing this partly to vent, but also to remind healthcare professionals what not to do to patients waking up from anesthesia. I also think my experience may serve as a reminder that it’s ok to fire your doctor when conditions warrant.
I chose my gastroenterologist based on his credentials and the quality of training and experience listed on Healthgrades.com I had no personal recommendations to rely upon – so I used what I thought was a reasonable method for finding a good local doctor. When I met him for our initial office consultation he seemed rushed and distracted, without genuine curiosity about my complaints, complicated history, or how to help me find the correct diagnosis. I brushed my instincts aside, presuming he was just having a “bad day” and hoping for more time to discuss things fully once a battery of blood tests had been completed.
Sadly, I didn’t have the chance to review the results with him – instead he instructed his nurse to read me the results over the phone and to schedule me for a colonoscopy. I wanted to discuss the pros and cons of the procedure and what he thought he might be able to rule out with the test. He did not provide me with basic informed consent information, nor was he able to articulate medical necessity for the scope. I decided not to have the test, and I didn’t hear another word from him or his office.
Months later my symptoms had worsened and so I decided that a colonoscopy might help to further elucidate the potential cause. I was not able to get through to my doctor via phone, so I scheduled the test via his nursing staff. I planned to be the first patient of the day, so that we would have time to discuss my symptoms and concerns.
On the day of the procedure my physician stormed into my surgical bay and began reading my medical history to me from the computer screen, without exchanging basic niceties or introducing himself to my husband. I confirmed the information and tried to offer some nuance since our last office meeting. He cut me off, and made me feel as if my observations were completely unhelpful and were getting in the way of our scope time. He left in a rush before I felt that he had any clear sense of what we were trying to accomplish or rule out with the procedure.
A jovial anesthesiologist then entered my curtained cubicle, and made genuine human contact with me. He inquired about the reasons for the procedure and expressed appropriate glee regarding my Mallampati grade I airway. I asked him if he would be so kind as to not position me directly on my left shoulder during the procedure as it was exquisitely tender from a recent orthopedic injury. He promised to do his best to protect the injury while I was sedated.
Cut to the endoscopy suite where the gastroenterologist enters with a grumble as the techs bustle around the scope equipment and the anesthesiologist explains the slightly altered positioning for my comfort. As the propofol anesthetic goes into my vein I feel the gastroenterologist push me fully onto my injury as I lose the ability to protest.
After the procedure I’m back in my bay with my husband, groggy but with more pain in my shoulder than anywhere else. The curtain is drawn back with a yank and in marches the GI doc, relaying the unanticipated abnormal findings. I ask (in a slightly slurred tone) for more information, to which he responds in a loud voice, “You’re not going to remember any of this so just be quiet and listen!”
I persist in my attempts to understand the details to which he shouts “Shut up and listen” with increasing decibels. When I say that the findings still don’t explain my symptoms and that I remain perplexed he says that I should “try probiotics.” Finally he leaves the room, not offering any reassurance about the possibility of bowel perforation and stating that we’ll “Just have to wait for the pathology report, and it will take a while because of the July 4th weekend.”
I was dumbfounded, and not just because of my post-anesthetic stupor, but because of the open hostility showed to me by one of my peers. I asked my husband if I was out of line in my questioning and he said that I sounded “like a drunk person” but that the doctor was definitely being “an a**hole.”
As the nurses untangled me from the IV and EKG stickers and rushed me into a wheelchair and out to my husband’s waiting vehicle, all I could say was “Wow, my gastroenterologist was really mean to me.”
The nurses just nodded and suggested that I wasn’t the first to notice that.
As I recover from the whirlwind interaction with the healthcare system, I feel relief and anger. I’m relieved that my GI doc didn’t perforate my bowel and that we accidentally caught some very bad stuff early on, but I’m angry about how I was treated and feel no closer to an explanation for my symptoms than when I started investigating a year ago. My experience was probably fairly typical for many patients dealing with physicians who have lost empathy and compassion. I am sad that there are so many like that out there and I promise to do my best not to follow suit.
My bottom line on gastroenterologists (sorry for the horrible pun): Go with your gut. If your doctor displays jerk-like tendencies during your office visit, rest assured that they can bloom in time. Have the courage to find another doctor before you put your life in their hands and/or they get the chance to verbally abuse you in a post-anesthetic stupor. I am firing my doctor a little bit on the late side, but doing it nonetheless. I just hope that my orthopedist is a good egg (like my anesthesiologist) – because I’ve got one heck of a sore shoulder coming his way!
How much are good bedside manners worth? Would you double your copay if you could be guaranteed an extra measure of TLC from your physician? Can we put price on a physician’s warm smile, an understanding nod or a reassuring hand on your shoulder? Do patients have to contract with a concierge medical practice to receive this treatment?
I agree that our bedside manners with patients need some rejuvenation. It’s not fair, however, to isolate this issue out of context. Physicians today are facing crunching pressures from various sources that we cannot always compartmentalize when we are facing our patients – even though we should. Most folks believe that the bedside manners of the prior generation of physicians were superior to ours. Were our predecessors simply more compassionate and caring human beings than we are? I don’t think so. I think the medical profession was a different beast then. I hypothesize that if these wizened physicians entered the profession today, that they would behave differently.
Context is so critical when examining any issue. Read more »
*This blog post was originally published at MD Whistleblower*
It seems that there are medical schools taking the initiative to help their students become more compassionate. It’s a worthy goal but I don’t know if it’s possible. We can teach individuals to act compassionate. But that, of course, is different from being compassionate. While there may be literature to support the cause, I don’t think that a curriculum can cultivate empathy.
Is it possible to change a student or doctor’s heart? Of course, I see it all the time. But not from role playing or small groups. It’s human circumstances that drive change. Personal loss and life experience tempered by introspection and humility change how we see those around us. It’s only when we recognize our own vulnerability that we can begin to see it in others. This doesn’t happen in a classroom. Read more »
*This blog post was originally published at 33 Charts*
One of the best initiatives in social media and healthcare I’ve recently seen is definitely the Radboud REshape Academy.
Finding for our path to migrate into real participatory healthcare we come across a lot of interesting people, information, innovations and most of all questions.
Right from the beginning we started to share, with our network. We have been doing this with our conferences, our research, our lectures and through field trips made to our Radboud REshape & Innovation Centre for HC institutions, insurers, government and other people interested in changing healthcare. And of course our Innovation Centre.
In setting up The Radboud REshape Academy (@REshapeAcademy on twitter) we would like to create Read more »
*This blog post was originally published at ScienceRoll*