Balls and Walnuts
more than you ever wanted to know
Doctors, sausage-making, and killing hope
No secret around here that my friend’s breast cancer diagnosis has had a profound effect on Karen and me. For Karen, this has dredged up some painful memories regarding her own health problems and her father’s death.
Here’s Karen.
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. Doug 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?
K.
I’m going to ask my neighbor that–he had a particularly horrible sort of cancer and he’s one of only two long-term survivors currently alive in this country. (No, I have no idea what sort of cancer or how many people get it. Three people ever, this wouldn’t be such a big deal, eh?). When he was in his twenties he was told to say goodbye, he had zero chance.
He’s in his fifties now. Anyway, he has many strong opinions about the issue of patient communication. Okay, so everyone does.
Karen, I’ve read your blog entry twice and yes, it made me cry and no, I don’t know why. I am like you in that I have to know the specifics of what I am dealing with in order to fight it. It is not that I don’t have faith in doctors.
When I kept complaining to my oncologist about my excruciating headaches, he finally yelled into the phone he was going to give me an MRI to prove to me “it was all in my head.” HE said I couldn’t keep calling him about headaches. Then he hung up the phone. I didn’t understand why he was acting like that because I thought we had developed a bond – a personal relationship. My MRI found a brain tumor. My oncologist could not give me the results because his two year old was in ICU officially diagnosed with cancer. It was his only kid. He had put his wife into menopause to get that one little chicken. His backup told me how sorry he was about everything and asked what he could do. I told him to give me 100 darvosets.
There is a fine line between crushing people’s hope and giving them enough knowledge to make intelligent decisions. I pumped my oncologist for info and when things still weren’t right, I did my own research. Sometimes the life you save is your own.
Yes.
Whenever anyone tells me they have good news and bad news, I always want to hear the bad news first. I come from a long line of diabetics and I hate sugar coating. Last summer, when I had mysterious spots, No One Would Give Me A Straight Answer and it DROVE ME BATSHIT.
I can deal with bad news, I cannot deal with ‘the unknown’. I find it much, much scarier.
I believe I can’t make an informed decision without as much information as possible, so, yes, I want to know even if the prognosis is bleak. Especially if the prognosis is bleak. Not everyone gets the luxury of being able to get their affairs in order before they go — I want that.
I’m with tambo, the unknown is much scarier. My mind can create some horrible things. (And we all know tambo’s mind sure can, too.)
I’m sure there are people who think I have a ‘morbid fixation on dying’ – I prefer to think of it as being acutely aware of my mortality.
I come from a long line of people who’s attitude toward their medical issues was ‘ignore it and it’ll go away’. My father knew the mass in his lung was malignant for 6 months before he had it removed. My mother went decades without going to the doctor until her hip pain was so bad she wanted it replaced.
I’m not like that because I was diagnosed with Type 1 diabetes at the tender age of 8, and about the only good thing about Diabetes is how much emphasis is put on patient education. But even so, during my teens and 20s I avoided doctors. (And that’s part of why I am now waiting for a kidney transplant.)
Death is scary for people. It’s the one thing no one has any real control over. People want doctors to have control over it, because then SOMEONE does. And most people tend to deal with their powerlessness by ignoring it and hoping it’ll go away. But at best we can only delay it for a time. Me, I agree, the best way to delay it is to be aware of all the ways it may happen so I can better minimize my risks.
Just wanted to say how much Karen and I have appreciated all of your comments. Thank you 🙂
It’s funny how this is striking a chord in my own life at the moment. My mother is in the hospital, and we’re considering whether she might be better in a care facility nearer to us. We’re battling all of those end-of-life decisions. Can she manage on her own? etc.
Due to the disease she has, she looks much older than she is. I took her some photograph albums yesterday, partly to remind her of things, and partly to pass the time, and I was almost in tears when I saw pictures of her at 60, only 15 years ago. You wouldn’t think it was the same woman.
I’ve been kind of saving up to comment on these posts, but I’m not sure that I’ll be able to do the topic justice. Just so you know, I find them thought-provoking and honest.