Communication. Everyone has their own style and doctors and patients are no different. When it comes to chronic illness, a lot of information has to pass between a doctor and patient to ensure the best possible care and treatment are being provided and followed. It’s a two-way street that can be difficult to navigate. After years of dealing with med students, residents, fellows, doctors and surgeons, I’ve boiled down these communication styles down to three main types.
The first is paternal, which is defined by dictionary.com as “the system, principle, or practice of managing or governing individuals, businesses, nations, etc., in the manner of a father dealing benevolently and often intrusively with his children.” For fathers, it’s a natural role and one of power, and hopefully, love. A father is expected to protect his children, and to make the best decision for their safety and survival on their behalf if the child is unable to or ill-equipped to make the decision on their own. Outside of fatherhood, paternalism involves making decisions for other people because you think you know better, or withholding information from someone because you believe they need protection from reality.
Here’s an example of paternalism as used by doctors. When I was about 14 years old, my primary liver transplant doctor moved to the States. In the interim of hiring a new doctor to head up the liver transplant program at SickKids, patient care was supervised by a doctor from Toronto General Hospital, SickKids’ adult counterpart. At the time my doctor left, I was off all of my medications, including immunosuppression, under doctor supervision. (Something I would only do under doctor supervision.) The doctor who took over was not impressed and used his role as a physician to intimidate my family into agreeing to put me back on immunosuppression.
His attitude conveyed to me that my fourteen years of experience with my illness and my body meant nothing. I was scared that not following his advice was equal to risking my liver and my life. Years later I realised just how arrogant he was when I actually read the correspondence that passed between my parents and the hospital. It turned out that my family was right, I was not in rejection, and my bloodwork numbers were not improved by re-starting the immunosuppression. He did not know better after all.
However, I tend to be paternalistic too. When it comes to disclosing information about my illness to friends and family members, I want to “protect” them from any bad news I receive. I decide they won’t be able handle it and I try to keep it to myself. Let’s face it, paternalism is a role of power, and being able to decide how and when and who I tell about things going on in my life puts me in control. But my determining certain people will not be able to handle the reality of my life is arrogant, and leads to me not even giving them the chance to surprise me.
On the opposite end of the scale lies the alarmist. An alarmist is “a person who tends to raise alarms, especially without sufficient reason, as by exaggerating dangers or prophesying calamities.” (Also from dictionary.com) In the medical profession, I associate an alarmist as a doctor who makes a judgement based on too little information or offers me too much information. Let me clarify.
I was diagnosed with heart failure in 2004, and my cardiologist at time told me I would need a heart transplant within a year. My next cardiologist, a heart failure specialist, informed me that I wasn’t sick enough to be listed for transplant, and might not need one for several years. She was right and he was wrong, I lasted five years before I was listed. I think I will always be a bit bitter about how he scared my family and me unnecessarily.
When I was listed, my cardiologist told my family and me that every heart transplant patient has complications. She didn’t go through and list for us all of the possible complications. In the months after my transplant I came to truly appreciate her approach as I encountered doctors who were only too eager to reveal their extensive medical knowledge through exploring all remote possible risks and complications in detail.
I think all people sometimes entertain thoughts about the worst possible outcome of a situation and I am no different in that respect. My difference lies in the fact that I try to keep my alarmist tendencies to myself. They come out with my family at times, but for the most part the only one who knows how much I worry about medical situations in my life is me.
Between the extremes of paternal and alarmist, there exists a balance I call realistic. This past week I experienced it when a doctor of mine told me prescribing drugs for my CMV at the moment was basically witchcraft. (I kid you not.) Fortunately I understood what he was really saying, which was that the balance between suppressing and boosting my immune system is delicate, too much in either direction has the potential to get me into serious trouble. So a lot of it is trial and error. I appreciated his candor.
It makes me uncomfortable when doctors in my life take on a paternalistic role for multiple reasons. One, I see the role of doctor as one of guidance, not protection. As the person living with my illness, I am the best one on my medical team to focus on the whole picture of my health.
Two, I cope better when I have my doctor’s honest opinion about my situation. When I started the ganciclovir, the doctors told me they were expecting me to be on it for two to three weeks. When I hit my fifth week, I saw an infectious disease doctor who told me seven weeks was the usual course of treatment. If someone had told me from the start that it would be at least seven weeks, I could have handled that better. Instead, every week for five weeks, I was thinking and telling people that it would hopefully be only two more weeks.
As for doctors who tend toward being alarmists, it is hard enough dealing with my own fears let alone hearing from a doctor that they could pan out. And I get it, when I’m excited about having information I sometimes share too much without considering my audience. It’s a hazard, probably an even bigger one when you’re a med student fresh from school.
There aren’t any easy answers when it comes to illness, but the doctors who are willing to be honest about that and help me figure out the best course of action earn my respect, and my admiration.