My wife asked me to post this under my account. I've cross-posted her essay at Balls and Walnuts. Here she is.
Yummy bratwurst: you know you love it. But do you really want to know what goes into that bratwurst? The sausage-casing alone should give you pause. If you allow the sausage-making process to remain a mystery, your enjoyment need not be impaired.
Medical decisions are sausages. Some folks want their doctors to give them their plan as a fait accompli, while others would rather know every last fact and study result the doctor considered in making his decision. These patients want to know what's in their sausage.
But how many seriously ill people want to know the cold, unvarnished truth from their doctors? I would jump up and down vigorously (if I could jump), and say,
Tell me everything you know if you want to continue living. However, I have an uncompromising view of the truth which most people do not share. At least, that's what I call it. Other people might label it a morbid fixation on dying.
Be that as it may, I can't understand people who deliberately avoid any deeper knowledge of their condition. My husband, a surgeon, sees this all the time: folks who say, You're the doc, I'm in your hands, who figuratively cover their ears when he tries to explain the reasoning behind his decisions, who balk at a list of options, saying in effect, Just tell me what to do. But without adequate information, how can anyone make a rational decision? I know many people have that attitude. My mother, for example, believes that blissful ignorance is the best way to go through life.
I think my mother is an idiot.
Harsh, yeah, that's me. What kind of daughter would write that? The kind of daughter who cringes at the memory of her mother making healthcare decisions for her terminally ill father.
My father died two years ago. My sister, a rational person, helped care for him but she has a young daughter and a full-time job; she couldn't be there around the clock. I live about 400 miles away, have health problems of my own, and couldn't do much. My mother became his primary caregiver by default. She considered opiates intrinsically immoral and resisted giving him adequate doses because she feared he would become addicted. She couldn't fully accept the truth that he was dying. As a result, he suffered needlessly.
Do you give people information, even if it destroys all hope? In my father's case, the key information was the abysmal survival data on pancreatic cancer. He had close to zero chance of surviving this cancer, so addiction was an irrational concern. What's worse - that my father suffers, or that my mother despairs? I think you know how I would answer that question.
So, fine, I'm advocating forcing cold hard facts down someone's throat without regard to emotional pain and despair. As a matter of fact, when I was finally able to visit my father, I went ballistic on my mother. I successfully managed to browbeat her into giving him more pain medication. She followed my advice for three whole days before lapsing into denial once again.
None of us can face life without some comforting delusions. My sister clings to the belief that my father's oncologist did a good job treating the cancer and I've never said a word to shatter that illusion. I know that my sister draws comfort from the thought that everything possible was done to save his life. The truth? His oncologist was an arrogant asshole who, in addition to other idiocies, wouldn't take advice from a Harvard-trained oncologist who specialized in treating this particular form of cancer. I didn't tell my sister the truth because it didn't matter; I knew my father's prognosis was hopeless from the start.
I think there's a reason why in less "advanced" societies, shamans double as physicians. There's a reason why "magic" and "medicine" are synonymous. We want to think the physician has a mystical ability to heal; we want to believe he'll whip out a miracle from his little black bag. This belief is emotionally comforting. It fosters hope.
It's also an illusion.
I don't share this illusion because I'm married to a doctor and I've had more than my fair share of serious medical problems. It's hard to ignore the sausage ingredients if you're married to the sausage-maker.
As a patient, I want to know what's in my sausage. But from the point of view of the doctor (or, for that matter, the informed friend or family member), how do you decide where to draw the line between dishing out the facts cold or sugarcoating them? How do you give people the information they need to know without killing hope?