Should I Assume the Crash Position Now, Doc?
What do you say when a cancer patient wants to know the details not just of the treatment being given now, but of any and all possible future treatments of a different nature (e.g., radiation therapy)?
Notice I said “possible” treatments. This implies that the patient may or may not receive a certain anti-cancer therapy in the future, depending upon the clincal course. Some patients, however, insist upon hearing about every conceivable counterattack available should the cancer not respond to primary therapy. This is called (not surprisingly) speculation, and woe to the doctor who gives in to the temptation to play this game. The only guaranteed result from trying to guess what will happen to a patient is that the patient will suffer unnecessary distress.
So don’t speculate about someones’ life - it’s not fair to put them through such agonizing rumination over things that may never come to pass. Rather, say this the next time a patient asks about what will happen if such-and-such occurs:
“Don’t worry so much about the flight plan. We don’t know where this plane is headed, but just make sure that your pilot knows how to land safely, wherever that may be.”
AIN’T GOT NO INTERNET AT HOME UPDATE: Yesterday, after the twelfth consecutive day without internet access I made what I believe was the 24th phone call to the cable company. This time the call was quite brief, and when the voice on the other end of the line asked me why I was cancelling my installation appointment [scheduled for December 25th, 2017] I replied as follows:
It depends on your patient and how they handle stress. I’m a scientist. You can bet you’d tell me what the big picture looks like or I’d find the information somewhere else. I like knowing possibilities and alternatives. I’m used to thinking about them. I can distress myself much more with what I know or can find out than anything you can tell me. Know your patient before making a judgement about what is best to tell them or withhold from them.
Comment by Promenea — May 15, 2006 @ 9:41 pm
“We’re all going to F*&k ourselves in the A$$?” Is that really what you meant to say?
And this patient don’t leave the runway without a flight plan. Else, how whould I know whether the pilot was competent?
Comment by Yogi — May 15, 2006 @ 10:48 pm
As a cancer survivor who has gone through numerous chemotherapy’s……….I have done much of my own research, so that when I go to my appointments with my Onc., I can discuss MY opinions and options.
As for the C. O., I think your right, NOBODY knows what chemo will work after the first treatments.
IMHO
cheryl
Comment by cheryl — May 15, 2006 @ 11:35 pm
http://journals.aol.com/calvertyaya/ThePinkTeeShirt/ This is my blog that I talk about what I don’t ask my oncologist. I don’t ask questions because I really don’t want the answers. I don’t want him to tell me he thinks I should have died and probably will from cancer. I really don’t want to die from it. He can’t change that like you couldn’t change that for any of your patients and it’s just better not to burden either of you with it. We all do our best and maybe we come out of it without too much lost in the exchange. Me, I’ve lost a lot in the exchange. I don’t welcome the next round of treatments, if they are ever necessary. But I always bother myself with unnecessary ruminations. I always wait for the other shoe to drop. I always expect that the next trip into the cancer center will be the one where I hear “we need more tests.” And if more test, what will I lose with the next round of treatments. I can’t mow my lawn now, what next? At what point does someone say to my very young children that “You need to put your mother into hospice”? I was older and kept my mother in her own home. I don’t think my children will be able to do that even though two of them are Medics. And all of this is ruminations even though I’m NED now. My son points out that I should have died in my twenties of my heart condition. He ruminates that I’ll be around in my 90’s…good luck with that one.
Comment by Emmy — May 16, 2006 @ 3:37 am
Well, I read this post and was about ready to climb through my phone wires and hunt you down, but I see others have made the point quite nicely.
However, I have two litle allegories for you.
1) you know the old one I’m sure about the difference between (doctor, internist, surgeon, etc) and God? Ahem.
2) There’s an old saying in poker if you’re looking around the table trying to find the fish and you don’t see any, the fish is you.
Do you see where I’m going with this?
And to put a finer point on it than was done before, 100,000 Lives. And something about Frogs. TWO organizations devoted to ending the senseless and accidental deaths of patients in the US. Basically, the pilots flying the plane called healthcare are crashing more than an Al Queda flight school. Capiche? Let’s clean up that mess, and then perhaps I’d be willing to put my life in the hands of anyone, ANYONE, on blind faith.
Nah. See #1 up there…… Frankly, it’s just plain dumb to blindly trust anyone when you’re life is on the line.
And as for me, I agree with Ms. Scientist up there. In the weeks following diagnosis, I planted my behind in a chair and read up on the internet. Thankfully my oncologist realized I was a healthy (har har) adult with a right to be an equal participant in the course of my treatment, and answered my every question. Sort of. He answered them before I could ask them. I NEEDED those answers. Not having them would have been the wrong thing for me. I needed to know that if plan A failed, there was plan B and plan C and plan D and on and on. It was my way of knowing that we had options. You see I have not been a particularly lucky person, and I have been severely harmed and disfigured not once, but twice by surgeons I put my faith in.
No. No blind trust. Not when my life is at stake.
And don’t you think it’s just a wee bit arrogant for you to decide that you know what information a patient needs better than they know it themselves? What is this, “Being John Malkovitch?”
Comment by Crystal — May 16, 2006 @ 8:12 am
To Crystal: This is just my opinion, but I truly believe that the oncologist who speculates about all the terrible things that could happen if the cancer progresses is doing a disservice to the patient.
This is not to be confused with giving informed consent for therapy, which requires a long counseling session complete with written material for home review; in other words “full disclosure” of all the possible risks of treatment. Also, it is not cruel for the doctor to teach the patient about all of the symptoms and signs of trouble that should be reported if they occur, e.g., fever, et cetera.
But to say to a patient, “You probably will live six months” is the height of arrogance, not to mention false prophecy. Unless the doctor has some special communication with God Almighty, why pretend to be able to predict the future?
Comment by The Cheerful Oncologist — May 16, 2006 @ 5:03 pm
Oh yeah, forgot something. After 5 years that is the joy of a certain over-large and under-funded HMO (guess that depends on whether your a “member” or “Executive Officer”) who neatly ignored every warning sign (um, including tests, and textbook presentation) of cancer for said number of years until it was no longer questionable (well, no, they handed me a pill and said it was all in my head, and called back less than a week later with “ooops”), I found myself I the old Freudian Settee.
I whined to the Good Doc (of the other sort) “I don’t deal well with the unknown”. His response? “Welcome to the Human Race”.
I will grant there are those who don’t want the “bad news”. They just want the nice, paternalistic someone or another to “make it all better”. It’s my contention that said people are not common or emotionally mature or healthy, not in this country. My husband who is from Latin America notes that there, yes, you trust the Almighty Doctor, but here? Nope, it’s not a cultural norm in these here parts.
Comment by Crystal — May 16, 2006 @ 10:42 pm
Refresh is a useful key. I fell asleep reading old entries and when I took a break I didn’t see your reply.
From your flight plan analogy, my sense was you were talking about non-response to treatments and what alternate plans may need to be made, and that your comment was, look, I’m the trained professional, find one of us you trust and let us take care of it for you.
Regardless, I don’t agree, either with your initial hypothesis as I understood it, or your reply. One does not have to be arrogant in saying “you may have anywhere from 3 months to a year” as my Mother was told. She and we were prepared, but remained hopeful. She could get things in order as needed. Truth is not arrogance. Thinking you know who deserves the truth, or that nobody deserves the truth, is IMNSHO, arrogance.
It is part of what is so desperately wrong with medicine today. Unless there is clear and convincing evidence to distrust the patient, then do it. This is THEIR LIFE, THEIR BODY. And no one person should be able to overrule, as with non compos mentis.
Comment by Crystal — May 16, 2006 @ 10:59 pm
I agree with part of what you say. There is not a way to predict what course will eventuallly be taken, until some time has passed, and some medical course has been chosen, and some more information about how the patient is responding is forthcoming.
However, for you to say you are the pilot and that the patient must just buckle up for the ride is rather condescending, and I would personally be offended by that remark. Perhaps a better way to state it would be something like this:
We are in this together, and together with your input, we will evaluate your situation carefully as we travel together, we will research possible new avenues, we will discuss anything you wish, and we will make our best educated decisions to obtain the best possible outcome. YOU make the decisions.
Comment by Feisty — May 17, 2006 @ 1:09 pm
Feisty, that all sounds fine but I’d suggest that the Dr is better off thinking of himself as an expert consultant hired to give advice and recommend courses of action. The patient is the CEO. After all, the patient is the one that has to live or die by the decisions.
Comment by promenea — May 18, 2006 @ 1:24 am
Well, as a current CANCER PATIENT I hire the man who is the CEO but it is, after all,l MY LIFE!!!!!!!!! So do not tell ME I have no input!!! Dr. C is a wonderful man, I am sure he is extremely knowledgeable, but the patient often needs to feel that there is yet some control they have over decision-making. As I said, the decisions would be made TOGETHER. Condescending, promenea. I offer my perspective as a patient, not to tell him how to do his job. Many may prefer not to have input, but the patient, in my humble cancer-patient opinion, sometimes prefers to feel that they are in a partnership, and I offer another viewpoint.
Yep, I live and die by the decisions, that’s why I want input. Take my opinion or leave it.
Comment by Feisty — May 19, 2006 @ 4:26 am
In addition, I don’t think Dr. C needs to be protected from my opinions. I simply offered the opinion of a person with cancer, and truthfully said that some of us need to be included rather than being issued directives from the CEO.
We’re good, doc, right?
Comment by Feisty — May 19, 2006 @ 4:30 am
I do agree with you about not spending time speculating on obscure or yet-tried treatment plans. I don’t speculate at all, and prefer not really look at statistics, and I do trust the opinion of my team. I do like to investigate for myself, and look ahead a bit, and want and need and respect the experience of the CEO of my cancer corporation, but I’m just ornery enough to want to rub my hands together while making the plans and feeling I’m at shoulder to shoulder with the battle team.
Comment by Feisty — May 24, 2006 @ 11:15 am
I do not believe in concealing facts from my patients, and never would do that. I don’t think that C.O. is advocating that either. But there are limits to knowledge. Some patients think they can know everything about their disease, but they can’t, because everything is not known about every disease.
I defend what the C.O. is saying. Decisions are made based on facts. The doctor has the responsibility of conveying facts to the patient, and then explaining how, based on the facts, the next decision is going to be made. No one is contending that.
Our gentile author’s protest is when he is asked to speculate. Speculation means basing decisions not on facts but instead on unknowns. This is not good medicine, and it clouds the decision making process. This is a little like asking what will happen with the picnic if it rains. Easy to say the picnic will be cancelled or moved indoors, but doesn’t it really depend on specifics, like how long it rains, or is the rain a sprinkle or a deluge? We can talk about rain probabilities all day but the truth is the decision can only be made on the picnic day when and if the rain comes. Only at that moment are all the facts in evidence.
Many people, myself included, have almost a ghoulish obsession with eliminating unknowns. But the ugly truth is that unknowns are squishy. If you push them out of the way in one area, they seep into the other. If you try to account for every possibility, invariably something unexpected will come up. Then, everyone is thrown into a panic because they had a false sense of security, and realize with a shock that none of their well-thought-out contingencies even apply.
My opinion: Know everything you can know. But if there are things you cannot know with certainty, let go of them. Medicine is science and you are hiring a doctor to practice science. Let him do it. If you want to look into the unknown talk to a priest. I do not mean this in a derogatory way; I am just saying that patients sometimes expect everything from their doctors, and forget that doctors are mainly trained to do one thing, diagnose and treat disease. Speculation is not part of that process.
Comment by mchebert — May 24, 2006 @ 7:59 pm