In the Blog
A Tale of Two Doctors
Illustration: Erin McPhee
Monday: I’m waiting to see one of my specialists. He has the results of my pulmonary function tests in my file, but never shares them with me. He actually has to be reminded to compare my new PFTs to the previous ones. If I ask him for numbers, he’s evasive. His techs tell me they’ve been instructed not to give patients their data. His office claims that they can’t give my medical records directly to me, which is a violation of both USA and state law.
I haven’t been a fan of this specialist for a while, given all of the above and given that he spends a grand total of about 75 seconds with me at every visit. The only plus is that he’s prescribed a medication that has significantly helped my asthma. It’s a black box drug – ie, a medication that has some special risks and can potentially kill a patient in certain circumstances, and thus carries a stark warning in a black box on the packaging. This doctor and his assistants have never even mentioned that; I have had to research it on my own and weigh the risks and benefits for myself.
When he arrives in the exam room this time he barely stands still, does his usual one-minute-half-assed routine and walks out of the room while I’m trying to talk to him. I have to follow him down the hallway to corral him long enough to let him know I need a prescription refilled. He will tell me to come back in three months so he can spend another 75 seconds with me and bill my insurance hundreds of dollars for the consult.
I decide I’ve had enough, fire the specialist, and call his office to try to get them to cough up my records. They suggest that I should have another doctor obtain them for me. I tell them that I have a legal right to my own data. The conversation goes nowhere, and I realize I’m going to have to put up a fight to get the damn PFT results.
Wednesday: I land in the emergency room with sudden, intense pain in my side. Nobody dismisses me when I explain what happened and why I’m concerned about it. They immediately check for a collapsed lung, pulmonary embolism, DVT and, to be on the safe side, a heart attack, even though I’m younger and low-risk for that.
The nurses, phlebotomists and X-ray techs all introduce themselves by name. Even though the emergency room is busy, the doctor takes the time to explain exactly what’s going on. When he realizes I’m knowledgeable about my conditions, he speaks to me on that level. He admits that he’s not familiar with one of my illnesses, but assures me that he took some time to read up on it while he was waiting for my blood work to come back. When I ask him about my white count and differentials, he gives me the numbers immediately and explains why he’s comfortable with them, given the illnesses I have. I agree. The phlebotomist comes in to draw several vials of blood and asks me which arm I’d prefer to use. I ask one of the nurses about one of the values on the heart monitor that I don’t recognize; she explains it. At one point, my Mom’s on the phone when the doctor comes in to update me. She asks if they’d be willing to keep me an extra hour to repeat a specific cardiac test, just in case. The doctor says that would be fine, and remarks that the literature about the test is still conflicted, with some recommending the longer time frame and some recommending the shorter one.
I leave the hospital after sunrise. The RN who has cared for me for most of my stay tells me when she will be on duty again and lets me know I’m welcome to call her in case I have any questions I’ve forgotten. They send me away with a copy of my EKG so my cardiologist can compare it to my other tests. The rest of my medical records are easily accessible.
What was the difference between Monday’s medical encounter and Wednesday’s? It’s true that one was a routine appointment and the other was an emergency, but the difference in the doctors’ attitude and bedside manner was immense. In the former case, the doctor acted as though he were doing me a favor and made it clear that he really didn’t give a damn one way or the other. In the latter, I was treated with respect. Dr. Monday made it clear he didn’t want patients to have any detailed knowledge of their medical results; Dr. Wednesday and his team treated my care as a collaborative effort and had nothing to hide.
As someone who grapples with a fairly significant list of chronic conditions, I try to make a point of knowing what’s going on with my body. I’ve studied biology, chemistry and physiology, both inside and out of school. I love science, and before my health went south, I actually aspired to be a toxicologist or epidemiologist. I read medical journals and keep up on the latest studies. I make sure that I understand my illnesses to the best of my ability and know exactly what my medication is and what it does. I understand most of my labs and test results, and if I don’t, I know where to find help with them.
I’m not special; many chronic illness patients have just as extensive knowledge about their conditions as I do, if not more. Many of them can talk circles around me. This knowledge becomes necessary. We need to know what’s up so we know how to best approach it. Doctors like Dr. Monday, who withhold test results, think we’re completely ignorant, and want to talk at us, not with us, are anathema.
I’m keenly aware of the way medical professionals interact with me. There are many health care providers like the ones I met on Wednesday at the ER, including my primary care doctor, who truly listens and takes the time to make my treatment a collaborative effort. There are others who genuinely mean well and want to help, but are beset by scheduling issues that are totally out of their control, have fifty patients to see that day and can only give five minutes of their time. There are also unfortunately some who are incredibly patronizing or have God complexes. And then there are the ones who clearly don’t care, and are downright contemptuous, careless or nasty toward their patients. I’ve run into several of those.
The modern version of the Hippocratic Oath actually admonishes physicians to treat patients with respect; it includes a line that says, “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.” Some doctors don’t seem particularly bound to that sentence. If you Google “doctors don’t listen” you get pages of results, including tutorials on how to get your physician to pay attention. You also find many personal accounts from individuals who had dangerous conditions but were totally dismissed by their doctors. Chronically ill and disabled patients often encounter considerable trouble finding physicians who can diagnose and properly treat them.
Physician-patient dynamics are a critical issue for women, LGBT individuals, youth and people of colour; rapport (or lack thereof) with healthcare providers has a dramatic effect on bodily autonomy, dignity and quality of life. If you identify as female, you’re a person of colour, you’re fat or you’re young, you may have more of a problem getting doctors to listen to you.
Studies have shown that women don’t always receive adequate pain control and that their complaints are dismissed as psychosomatic more often than those of male patients. There have been cases where doctors have ignored repeated pleas for help from young women and told them to “stop Googling” their symptoms; there have been other incidents where female patients have been left in agony for hours in the ER.
There are documented, significant racial biases and disparities in the quality of treatment that people of colour receive. One analysis of over six thousand emergency room visits, for instance, revealed that people of colour were 22%-30% less likely to receive appropriate pain control in the ER than white individuals. Another study showed that Black patients presenting with coronary symptoms were referred for treatment less often than whites.
Members of the LGBT community have faced significant discrimination from healthcare providers, ranging from verbal abuse and homophobic comments to outright refusal to treat. In one survey by Lambda Legal, a full 70% of the LGBT patients surveyed reported being subjected to at least one type of abuse, mistreatment or substandard care from the providers who were supposed to help them. Trans individuals in particular often encounter extreme difficulty finding providers who will treat them respectfully and knowledgeably. In some regions, finding a LGBT-friendly doctor can present logistical and financial hardships and involve significant travel. Consequently, many LGBT individuals are unable to obtain adequate preventative care or treatment for acute and chronic medical issues and may be reluctant to disclose their orientation to their providers.
On top of all this, when patients fire their physicians or question their care, regardless of their reasons, they run the risk of being labeled as “difficult” or “doctor shoppers.” If you were dealing with an attorney, banker or accountant who was rude, condescending, concealed vital information from you or simply did a bad job, you’d probably take your business elsewhere without thinking twice about it. Patients, on the other hand, are often vilified if they push back against healthcare providers who treat them badly, don’t listen or don’t help them. Changing doctors multiple times is sometimes seen as a commentary on a patient’s character rather than the complexity of their illness or the quality of the medical providers they’ve seen.
Doctors shouldn’t be fleeing from health-literate patients or trying to keep them from accessing their test results; they should be embracing that thirst for information. Studies have shown that patients who are active partners in their health care, particularly when dealing with chronic illnesses, have better outcomes. A study in Therapeutic and Clinical Risk Management found that increased patient health literacy was associated with better adherence to treatment protocols. (http://usatoday30.usatoday.com/news/washington/2011-06-13-geriatrics_n.htm) Informed patients and their families can catch mistakes that medical providers miss; a 2016 report in JAMA-Pediatrics concluded, “families are an underused source of data about errors, particularly preventable.” In sum, the more a patient knows and understands, and the more of a collaborative role they take, the better they are able to manage their illnesses.
In a survey of teenage patients, most said that they wanted a doctor who would “wash their hands, use clean instruments, act honestly, and treat them with respect.” It’s really not asking for much. Doctors need to work with their patients, not against them; to be partners, not dictators. Patients live in their bodies every day; they need to be trusted, listened to, and fully included in discussions and decisions about their care. They need their medical providers to tell the truth, freely share labs and procedure results, and respect their patients enough to collaborate with them. We need more Dr. Wednesdays and fewer Dr. Mondays.
Patient advocacy resources:
Patients Canada Advocacy resources, guides and help, organized by province.
Ombudsman Ontario This government office cannot intervene with hospital or long-term care facility problems, but can address complaints and concerns about other healthcare settings and agencies.
The Assertive Patient While this site is based in the USA state of Massachusetts, it has salient information for all on how and when to file complaints about medical care.
Patient Rights Coalition (USA-based)