There are times in every physician's career when he or she faces a patient with a serious, even life-threatening disease or condition, who, for whatever reason, does not want treatment. These can be incredibly frustrating and challenging patients. Most physicians try reason, cajoling, and persuasion. Believe it or not, physicians are still held in enough esteem that this will often work on the force of the regard in which patients hold physicians alone. However, it doesn't always. Then the question becomes: How far can a doctor legitimately go to persuade the patient?
He relates the story of a patient who came in with an acute abdomen. For those who don't know what an acute abdomen is, it's an abdomen in which something catastrophic has occurred, either a a perforation of the stomach, small intestine, or large intestine, or some other process that has led to generalized peritonitis. Patients with peritonitis "look sick." Also, because peritonitis makes movement very painful, they tend to lie perfectly still and grimace if forced to move or if anyone presses on their belly. Indeed, there are certain clinical signs on physical examination characteristic for an acute abdomen, and every general surgeon becomes very skilled in diagnosing it because, well, that's what we do. It's considered our area of expertise.
In any case, this patient, despite having an acute abdomen and a CT scan showing air where it should not be (i.e., outside of the intestines, meaning that there is a perforation somewhere), refused surgery, even though surgery was the only thing that could save his life. This is about as close to a no-brainer of a situation as there is in surgery and medicine. Patient with perforated intestine and acute abdomen = operating room. If no operating room, patient with perforated intestine = dead patient. In any case, it was pretty clear that this patient was in denial. At that point, Shadowfax deployed a most interesting technique of persuasion:
"Okay sir, before you go up I've just got some paperwork to complete. Do you have a next of kin?""Um, yeah, my sister."
"Great. What's her phone number? We'll be needing to call her later. Do you have a mortuary or funeral home selected, or should we just have your sister pick one?"
"Um, I don't think -"
"No problem, we'll just have her pick one. Now, in a few hours, you're not going to be able to breathe any more, and if we're going to keep you alive, we'll have to put you on life support. Do you want us to do that, or should we let you suffocate?"
"That sounds bad -- I don't want to suffocate."
"Right, then, the ventilator it is. But a few hours after that, your blood pressure is going to go really low and your heart will stop. Do you want us to pound on your chest and shock your heart to try to bring you back? It won't work, of course, but I just need to let the ICU doctor plan how to handle it when the time comes. So should we do CPR or not?"
He gave me a long look. "You really mean it, don't you?" I said nothing, but let the long silence linger. "You really think I need the surgery?" I nodded. He sighed, and slumped back, resigned,"Well, all right, if you really think I need it..."
The question is: Did Shadowfax go too far?
I would argue that, in this case at least, he did not. Sometimes the only way to overcome a severe case of denial is through extreme bluntness. This case, however, was fairly obvious. Without surgery, this patient was definitely going to die a very unpleasant death within a matter of hours, or at most, a couple of days. The question of paternalism and how far a doctor can go in badgering a patient to let him do what needs to be done. Patient autonomy is important
Consider the case of a breast cancer patient newly diagnosed. Indeed, I wrote about just such a case last year presented to a tumor board I attended. She had an early stage breast cancer that could have been very effectively treated with a high probability of long term survival if she had let the surgeon do surgery on her. She decided instead to pursue woo and then came back a couple of years later with a huge mass that was no longer so straightforward to treat. When death is imminent without treatment, as in the case of Shadowfax's patient, it's easier to justify bullying; it becomes harder when death is likely to be many months or even a few years off without treatment, as in the case of the patient I wrote about. One difference is that, although we can say that the woman who refused treatment for cancer would be likely to die of it without treatment, we can't give a very good estimate about how that would happen. It's not an emergency. There's time.
Perhaps one principle that can guide a doctor is that emergencies give more leeway and more of a sense of urgency; techniques like the one Shadowfax used are more acceptable. Meanwhile, "bullying" a patient (as Shadowfax put it) is much less acceptable in non-emergency situations, because there is time to persuade them. Also, patients have the right to refuse treatment for any reason or for no reason at all. Patient autonomy is an overarching principle of the doctor-patient relationship. The key, however, is that the patient must understand the consequences of the decision to refuse treatment, and, even then, the physician is still morally obligated to try to determine whether a refusal of life-saving treatment is not due to denial and that it is based on a full understanding of the consequences of not treating. Sometimes achieving that takes a shock. But it's all too easy to go too far in the case where refusal to accept treatment is not a matter of denial but rather of the patient simply not believing the physician or simply wanting to decide differently.
I don't see this example as bullying. Shadowfax asked simple straightforward questions that were obvious and predictable consequences of the course the patient was on. I think the patient's problem was that in the rest of his life other people had not been so straightforward, blunt and honest but had led him down the primrose path.
The patient simply didn't believe the doctor knew what was going to happen. I suspect that is due in part to the erosion of belief in science and medicine by all those who push woo. By those who cast doctors as someone to be feared and distrusted. By those who foster the arrogance of ignorance by telling people they have special magic intuition simply because the problem relates to them, mommy intuition, tummy intuition, etc.
The "problem" with those types of intuition is that they derive from deep evolutionary time where there was nothing you could do for an acute abdomen except ignore it, pretend you were ok so predators wouldn't cut you off from the herd and kill you the 0.01% of the time you might otherwise recover. The fear and distrust of doctors instilled by the purveyors of woo activates that same mindset.
I don't see any bullying in this story either. Different people react differently to certain cues. When a relative was dying of cancer we all knew it was happening intellectually but in some ways we did not actually accept it. Then the Doc asked about a DNR. I can't to this day tell you why but that made the whole thing very real to us.
In this patients case it may have been the same thing. He or she may have though the doc was just being pushy. The change in the doctor's affect may have also slapped the patient awake.
This patient did not actually want to die they just didn't think it was that serious. Making the patient understand the situation completely is part of the doctor's job, which shadowfax did quite brilliantly. No if the patient is just plain hell bent on dieing or is convinced that by living they are violating the sky fairy's wishes they should (even must) be allowed to do so if they are of sound mind (different from smart mind), are legally permitted to make said decision and not coerced.
As long as he was using a respectful, genuine tone, he was spot on. This is really what informed consent is all about. The patient wasn't able to understand the effects (death) in a meaningful way, and the questions put it into context.
Because this was a time-pressured situation in that the patient didn't have the luxury of extended time to make an informed decision, the bluntness and crisis intervention type of education and counseling was entirely appropriate.
I'm pretty much in agreement with the comments thus far. As a physician, you take an oath to do no harm. This means you have to do extreme things in certain circumstances in order to save lives. If a patient really wants to die via forgoing treatment, then they can stand to hear exactly what will happen to them in precise detail. Its not paternalism, its a doctors job.
I think even with cancer patients, some bluntness may be appropriate. When I had cancer and was scheduled for chemo, I asked lots of questions of my doctor. It seems she was afraid I was thinking about not taking the chemo, and so she simply said in an everyday no-nonsense kind of voice: "If you want to live, you have to go through this". If I had thought about quitting, that surely would have gotten me back on track.
I think denial can be very strong, and being blunt bordering on bullying might be needed to get through the shield.
If bullying saves someone's life, then it's justified. Whether it saves them in 10 minutes or 10 years. If I ever got myself into a state where I was refusing necessary treatment I would very much hope that my doctor was willing to use any means necessary to get me to change my mind.
in the case of the acute abdomen patient, I think that you would be justified in sedating them and performing the surgery without their consent. That's what I would want to happen to any friend or relative of mine who was acting in such an irrational manner.
I agree with the commentors above. He did to that patient what I would like my doctor to do to me in the same situation. I go to a doctor for reliable information and diagnosis. If the recomendation that comes from that is "You will die without surgery. Now." I'd rather hear it put bluntly. It might shake me out of my tendency for denial.
I would also rather have my doctor be blunt if he or she thinks I'm about to do something risky like go for woo instead of a solid treatment with evidence to back it up. Even if I disagree with my doctor (which is much less likely for me these days), I've been given valuable information allowing me to see the other side of the argument.
Shadowfax was being a smartass, but under the circumstances it was completely understandable. The best thing he could have done was exactly what he did -- lay out the consequences as bluntly as possible. The patient wasn't listening to reason, so a little bit of manufactured consent was absolutely necessary there.
If it were allowed, I would give Shadowfax an honorary Respectfully delivered Insolence award. imo, that is an example of applying the principle in a fashion where the outcome appears to justify the method.
Does the situation really have to be a life threatening before the problem gets ethically interesting?
In my early 20'ies, the only available treatment for Chrohn's + fistulas was bowel resection. When my doc said it was time for my fifth, I thought about the previous ones and asked for Cortisone instead. He politely explained why this was a bad idea, but I was sick and tired of surgery and ignored his advice. Of course, I caved in eventually, but a little bluntness would have saved me an excruciating summer.
What bullying? It's not in that scene. Harsh, maybe, but necessary.
Its helps if the person respects the doctor or doctors in general. The woo factor is a gigantic problem with the inflammatory arthritis's. If your bloodwork is normal and doctors, even RD's dismiss the joint pain you can see the rep doctors gain. So once you finally get a diagnosis and the treatment the "good" doctor offers you is Chemo when you don't have cancer, you can see why they turn to diets, antibiotics etc. If you have been to three or more doctors and been dismissed as sensitive, you'll never, ever trust them again. Even one who you know has your best interest at heart.
The problem with the inflammatory arthritis's is, you have a 2 year window of really taming the disease. If you have no aggressive treatment until after that time, it is very hard to control or prevent damage. With the biologicals, and MTX, if you get treatment early you can live a completely normal life. Ifs its too late, you'll be like me, none of the medications can completely control it. I never fell for woo, I just had bad doctors.
So the woos are waiting for the people who are scared of chemo, MTX and will try all the natural stuff wasting their window of time. Have you checked out the woo of of antibiotics? Or how the woos scare people about MTX or the bioloicals?
In this case, the proof is in the pudding. It worked. We weren't there, but it would seem that any other tack would not have worked. Besides that he didn't lie. He was asking totally appropriate questions.
I know I've been a recalcitrant mother-of-patient and I've had doctors tell me that "no there's no choice here."
I've also been bullied by a (urology) research surgeon who was trying to get patients to practice a surgery on and my kid looked tasty to him. I said, "NO." and it was the right choice to make.
Bullying?
No, I saw that as direct and frank, and smart--in involving the patient and getting him to process the consequence and steer him to making the decision required for the situation.
Put me in the "blunt, not bullying" camp. He was simply stating the cold hard facts to the guy, and getting from him the information Shadowfax would need anyway to give to the next of kin.
I think part of this was that the young man realised that Shadowfax cared. That Shadowfax was pissed off that he was being an idiot because he cared.
Way back before curative surgery could be applied (with any hope of reliable success), those would have been the questions that any doctor would have asked!
Even nowadays, they are practical questions regarding patient directives for care. After all, it sure is hard to get useful answers from the patient when they're further in dire straits.
andrea
I think the thing was that the fellow was young.
He had no reason to think that he wouldn't get better because he always had before.
Good health is wasted on the young they don't appreciate it nearly as much as they should.
I'm not sure you'd have to do this with somebody older because they'd know that people die from stuff they never even imagined they'd get.
I don't think he was a bully, but I also don't think it would have been the appropriate line of talk to take with a 70 y/o.
I appreciate the doctor's approach in this circumstance.
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If a person is age 75 or more and diagnosed with cancer, how much treatment should be urged?
I don't consider this bullying either. I consider an interesting form of being blunt. I think this case was easy and the action was fully justifiable
Shad dun good. But the next time this sort of thing happens he needs to get the dang fool to sign a donor card. No sense in letting parts go to waste. :)
The organs from such a patient couldn't be used, as patients with active severe infection are excluded from being donor, and I'm hard-pressed to think of a more severe active infection than sepsis from a perforated viscus. By the time he died of sepsis, even if it weren't for the infection, his organs would probably be damaged beyond recovery from low blood flow, anyway.
Bad doctor: Orthodontist that wants to crack and widen the jaw of a 6 year old.
Good doctor: Thinks BD is insane and tells mother to let the child's jaw and teeth grow normally and cross that bridge when the time comes.
I am eternally grateful to ortho #2.
In any sort of "bully" situation for the patient's sake, as long as they realize they have a second opinion window available, bully away, I say. I, personally, always shoot for second opinions when any surgery is laid out on the table.
The case you discuss sounds like one where keeping a blank death certificate handy would be a good idea.
"Sure, we don't need to operate, but just fill out this form first. "
Okay, so that may be a bit harsh.
That was not bullying. For one things, those were legit issues. For another, he didn't threaten the patient. He just was blunt enough to shock him out of denial. Sometimes being too tactful just confuses people.
It was also not bullying when my dental surgeon told me I would have to find someone else if I wanted to avoid general anesthetic. It gave me a straight statement of his point of view, and he went from that into finding out what my objection was (stories of patients feeling pain but unable to signal, plus my tendency to react to lower doses on drugs). Turned out he was only planning to use valium on me, nothing that would paralyze me, which is where the horror stories come from. And with the drip, they'd be in control of how much dose it took to keep me at the right level of sedation. Turned out I needed twice as much as the average person to put me out, and it took 3 times as long.
Believe me, I think highly of that doctor and I'm sure Shadowfax's patient is glad he wasn't allowed to commit inadvertent suicide.
I suspect cancer patient have a lot of fears they aren't expressing, like chemo side effects, dying anyway, facing changed relationships with people who treat them as fragile, pitiful, doomed, etc.
I would think that something like a support group for cancer patients that is led by professionals who can help the people deal with their emotions and a medical person, either doctor or RN, who can talk to the patients about the factual side of things, might help people get through both the decision making and the treatment process.
The bloke had been given all the information to make an informed choice. He made the decision to risk it.
By working through his 'last hours of care plan', Shadowfax was actually working to enable his choice.
An interesting point in this story is that patient was "in denial" (i.e. not making a rational decision.) He needed to be scared in order to make the rational decision. While it seems ironic, emotion may be a requisite for making a decision (rational or otherwise.)
According to the transcript it seems like the word "suffocate" was important as well as the strategic silence after discussing CPR.
Are there any iterations of the same narrative that might allow shadowfax to feel less like a bully even though everyone agrees (including me) that it would be irrational to feel that way?
For instance, maybe encourage the patient to be admitted so that doctors can give medication to make his death more comfortable (along with that first of kin/CPR info) and that if he changes his mind they can get him to surgery more promptly.
Or maybe appeal to some other emotion that will help get him to make a rational decision.
Of course we can't know if other versions would have had the same effect but I'd be curious to read other possible versions.
Sorry if this resulted in multiple posts but I was getting an when I hit the post button
As the other posters point out the ED doc's strategy was appropriate for the situation. But, as anybody who's ever trained a puppy or raised a kid knows, it's much harder to come up with a strategy when consequences are so far removed from actions.
A poster mentions the patient distrust that builds when your "numbers" are "correct" but you feel like crap (I imagine this is frustrating for both sides of the equation, the patient still feels lousy and the physician may not have a clear direction to move in to help).
Personally, I'm less likely to take a dr's advice if she can't help me understand the risks and benefits within the context of my life. When my oldest child was born many many moons ago I ended up with Hashimodo's syndrome. The dr I ended up seeing told me (without benefit of bloodwork or x-ray) that I needed to fry my thyroid tomorrow. When I pointed out that I was nursing a ten week old infant his only suggestion was "stop" when I asked if there were any other options he said "no".
Need I point out that this was not a trust building encounter? It also wasn't a successful
intervention as I completely ignored his advice.
I've had encounters like that, and I've had encounters were the dr said "this is hard stuff to deal with. If you want a second opinion I can either give you the name of one of my colleagues or I can give you the number for an educational orgnization dealing with this problem and they can steer you to a second opinion."
As a fellow hashimoto sufferer (didn't have a hyperthyroid phase, though), I can understand. But if you were scheduled for RAI so soon, your symptoms must have been pretty severe and unmistakeable. The Dr should have explained that severe thyrotoxic crises are critical emergencies, that there were risks of heart failure (especially if you have a history of HBP). x-rays wouldn't have told him anything more. He could have asked a TSH plus T4 blood tests to confirm, but a hyperthyroid state is generally obvious, and this pattern of thyroid dysfunction is very frequent after pregnancies.
Kemist, Hashimoto's does indeed have real and potentially fatal consequences. That wasn't my situation. Indeed, under the care of the second opinion physician, coupled with annual visits to an endocrinologist, I hung onto my thyroid for another twenty years. Now I get to deal with a different set of thyroid issues and I'm telling you I hate hate hate feeling the cold so acutely.
My point was less about the specifics of my health and more as an example of an unfortunately too common unsuccessful medical conversation.
Given that we go to physicians for their expert knowledge (even when we argue or ignore them) the burden falls more heavily onto the dr to make the case for any intervention.
Shadowfax was doing the medical equivalent of handing out arm bands to idiots who want to "ride out" a hurricane.
I've seem something similar done when a woman was bleeding out after delivery and refusing transfusions. Her OB brought the baby to her so she could hold it before she died, and a priest to baptize the baby. She realized that she was seriously in danger and her fear of transfusions went away.
Why is this even a dilemma? Has our culture got so confused that people can agonise over a question like: "Should you let a stranger die to avoid hurting their feelings?"...?