Jan 01 2013
Beyond Informed Consent: Shared Decision-Making
You are currently browsing comments. If you would like to return to the full story, you can read the full entry here: “Beyond Informed Consent: Shared Decision-Making”.
17 Responses to “Beyond Informed Consent: Shared Decision-Making”
Sounds very interesting.
The NHS, here in the UK, has something called ‘Expert Patient’ groups. The basic idea is to use people who’ve been successfully managing a condition (asthma, IDDM, NIDDM, IBD etc.) or living with the effects of a procedure (colostomy, hip replacement, CABG, cochlear implant) to meet with newly diagnosed patients, or those being asked to consider a particular procedure or treatment. Where possible the expert patients and the new ones are matched by age and lifestyle, so that the new patient can get a good idea of how they might be affected.
There are also Patient Advice and Liaison Services (PALS) teams in hospitals. They can assist patients with questions/complaints/fears about aspects of hospital treatment or care.
Between those services, condition-specific clinics at GP surgeries, named dedicated nurse practitioners who can be contacted with questions, and telephone/internet information services, it’s a lot easier than it used to be to get information about treatments, therapies, and procedures.
It also gives patients (and their families) the chance to understand their options, as opposed to just knowing what they are.
Hopefully it relieves some of the pressure on GPs and consultants to use a limited appointment time to deal with all of a given patients’s fears and concerns.
It’s obviously a lot easier here though, given that one single mega-entity (the NHS) controls every aspect of public healthcare. Distribution of educational material such as books or DVDs, information packs containing posters and leaflets is therefore able to be centralised, and the information within is standardised and consistent. This would probably be a nightmare to arrange in the US!
Thank-you for five years of thoughtful, understandable, relevant blogs – looking forward to Year Six. Carol
Patient autonomy is largely a myth, in my opinion. Perhaps shared decision making comes closer to what’s possible. But, in reality, most patients just go along with what the doctor recommends. They have insufficient intelligence to come to a reasonable decision, and/or insufficient time to research it, and/or insufficient background knowledge to make sense of what they read, and/or they’re bogged down by ideology or logical fallacies or a lack of critical thinking abilities. Hopefully doctors will progressively become sufficiently skilled in science based medicine to lead the patient in the desirable direction in their shared decision making.
I have had to make one big medical decision in my life: to have or not to have a PSA test. When my father was diagnosed with prostate cancer, I almost went along my my father’s Urologist’s recommendation that all his sons be tested. A chance reading of an article sent me off on a three month review of the literature available on the Internet. I decided there was insufficient evience to have the test, but I continue to monitor the literature. Most patients are really not inclined to spend the time required to do such a review or skilled enough to know how to do it properly and make an intelligent decision based on it.
Obviously, patients do make a contribution to the decision, if only to agree with what the doctor would do. But, in the large majority of cases, it simply is not an equal partnership. A doctor well versed in science based medicine should not be concerned if the patient leaves the decision to him, because that should ensure the highest probability of a good outcome. His decision would obviously include a consideration of the patient’s particular circumstances. There are situations where no option is any better than any other. In these cases, the patient has to make the final decision. But he might as well flip a coin.
[...] Beyond Informed Consent: Shared Decision-Making Good piece bringing decision science to informed consent. [...]
Fascinating topic! I think you pose some very good and valid questions.
I’ve been following Dan Ariely’s RSS feed and podcast and earlier this year he talked to Simona Botti who wrote a paper about patient decisions. Her work appears to show that when patients have to choose between bad outcome A and bad outcome B that they regret their decision regardless of the choice while patients who do not have a choice don’t suffer regret for their choice.
Tragic Choices: Autonomy and Emotional Responses to Medical Decisions
http://www.columbia.edu/~ss957/articles/TragicChoices_BottiOrfaliIyengar.pdf
abstract:
We investigate how making highly consequential, highly undesirable decisions affects emotions and preference for autonomy. We examine individuals facing real or hypothetical decisions to discontinue their infants’ life support who either choose personally or have physicians choose for them. Findings from a multidisciplinary approach consisting of a qualitative analysis of in-depth interviews and three laboratory studies reveal that perceived personal causality for making tragic decisions generates more negative feelings than having the same choices externally made. Tragic decisions also undermine coping abilities, weakening the desire for autonomy. Consequently, participants disliked making decisions but also resented relinquishing their option to choose.
Dan Ariely’s podcast is called “Arming the Donkeys” and can be found on iTunes. It’s an interesting 5-minute per week podcast following behavioural psychology.
@BJ:
A good outcome is personally defined. In extreme cases death may be the preferred outcome, though we may initially regard it as objectively “bad.” It is for this reason that a partnership is required. The fact that the partnership is unequal and does not inherently nullify autonomy, or else I would not be autonomous or have any hope of good outcomes in most things I do in life since I am not an expert in most things in life. You say that my decisions as a physician would take into account the patients’ circumstances and indeed I would do so to the best of my ability, but considering how difficult it is for a patient to accurately assess his or her own circumstances in many cases it would be ludicrous to think I could do better in all cases.
The key here is that a person may not be able to accurately assess his or her own desires or predict the future of how they may handle a given outcome. This makes the partnership more complex and, since it is, unequal makes it ethically requisite for the physician to shoulder more of the burden than an otherwise “fair and equal” partnership would otherwise require (hence my own distaste for physicians and med students who complain about having to work extra hard because their patients are stupid louts who can’t adhere to treatment regimens).
So while a physician is an expert in medicine, the patient is expert in his or her own life, desires, and values. Knowing what I have written above it is thus necessary for me to shoulder more of that responsibility to help the patient utilize his or her own expertise to the maximum capacity, but I can’t fool myself into thinking I am more expert at being the patient than the patient himself is.
I should add that a simplistic view of “good” and “bad” outcomes on the part of physicians is actually a bad thing – the general physician ethos that death is the ultimate bad and should be avoided at all costs being an excellent example.
FSM darn it to noodly hell, every time you do a book review my reading list gets longer. It’s already at 200 titles, could you start reviewing movies? Pamphlets? Short videos on youtube?
At least I’ve already read Snake Oil Science
Am I totally in the minority who can see the value of watchful waiting? That what you know can hurt? Certainly what you don’t know can hurt you, but unnecessary surgical biopsy, which might or might not lead to more surgery and treatment for something that would have been very unlikely to kill me would still have the negative side effects of limiting my energy level and mobility for a time. In middle age that’s is a slippery slope for even less activity, weight gain, metabolic syndrome and heart disease. Is the number one killer of women breast cancer or heart disease?
But how do I find a doctor who shares a more sophisticated understanding of science, risk and benefit? And who truly understands what patient shared decision making really is? I’ve been happy with my PCP, but gradually am realizing she’s not all on the same page as me. When I questioned annual screening mammograms, she retorted that she had a patient DIE from DCIS! So do I try to educate my doctor or do I look for a new one? Finding a new doctor is a huge hassle and one is never guaranteed to find a better one. If I got her a copy of this book, would she take it the right way?
I did learn from a breast cancer surgeon that the radiologists have stopped using the BI-RADS 3 category, the watchful waiting category. Patients don’t want to wait and radiologists don’t want to be sued. How can we have shared decision making that way? Because if they say I do need a core needle biopsy for that one tiny spot that is suspicious, but because it is so small, they do the procedure twice because they were in the wrong spot the first time, so I end up getting zapped with all that extra radiation from the stereodactic machine and in 10 years develop a cancer, I really can’t go back and sue the radiologist who bumped you from a BI-RADS 3 to a BI-RADS 4 without my knowledge or consent, can I?
But I also know that I am unusual in that I have the time and the resources to do some research and think for myself. That’s not the case for everyone. Plus, there will be times in my life with significant health and emotional issues where I won’t have the capacity to follow complicated reasoning in order to make decisions for myself or someone I love. I cannot guarantee I will always have a level head.
I will read the book. Thanks for the work you all do here on SBM.
nybgrus,
In what percentage of medical consultations is the patient after a shared partnership?
I would say it would be a small minority of patients in a small minority of circumstances. Looking at it from the point of view of diagnoses and treatements, I would say that, in the vast majority of situations, the diagnoses and treatments are clear cut and, in the vast majority of cases no imput from the patient is actually required, except to agree with the doctors recommendations. And I would say that, in the vast majority of cases, patients would agree and go along with the doctor’s recommendation. Exceptions would be a patient with a warped sense of reality, or someone with particular religious beliefs, or someone with an unusual life philosophy (financial status is not an obstacle in Australia). Okay, so that patient goes against what the doctor recommends, but is that a shared partnership? The doctor shows the patient all the reasons why he should have a particular treatment, and the patient decides he will not have the treatment because of his quirky sense of reality, religious beliefs, or philosophical outlook.
In the small minority of situations where there is no clear cut treatment plan, but a variety of options which the doctor is hard pressed to decide between, either the doctor can randomly pick one option or the patient can randomly pick one option. I don’t see a partnership here either.
So what are we really talking about here? In my opinion, the old domineering doctor and the old paternalistic doctor have given way to doctors trained in the art of diplomacy. It is certainly an improvement in attitude, and I’m sure patients will feel better served by such doctors. But I don’t see a shared partnership.
I don’t have any medical issues, but last year I found time in my busy schedule to see a dentist for the first time in ten years. Actually a front tooth snapped off, so it was an acute dental emergency! But I took that opportunity to have all my dental disease diagnosed and treated. Most of it was straight forward. There were three teeth minus their previous fillings which needed to be re-filled. The forth tooth had to come out. Why? She told me that the x-ray showed there was a (presumably sterile) abscess at the root of the tooth, and i confirmed that it had been painful at one point. So she explained why, but did I have a choice? The tooth was coming out. Period. Then there was a another front tooth which had previously been fractured in an accident. That tooth had been capped, but the cap had now discoloured. She quoted me the price and I agreed to have it re-capped. Was that a shared partnership? As opposed to her saying “you are going to have that capping replaced” or “don’t be silly, it’s just a yellow tooth, and it won’t subtract much from your ugly son of a bitch appearance”. I mean I did appreciate the diplomacy. There was also a space which she offered to fill at some exorbitant price, but for about a thousand dollars cheaper than the going price. I declined because my son needs a car instead. Was that a shared partnership?
Maybe it all comes down to definitions.
BJ:
I agree that in many cases it is clear cut and pretty straightforward and little partnership is needed. When your plumber tells you the leak from your toilet needs a particular widget you don’t go ahead and rebuff him.
I disagree that so much of medicine is quite that straightforward. My days on the wards of internal medicine were rife with examples contrary to your current statements. We spent every day talking about options – ones which we needed to suss out medicall and each with its own benefits and risks. Who am I to decide which risk:benefit is right for my patient? The magnitude of each is usually quite subjective.
By anecdote:
I had a patient (now last year) who was a very sweet old lady. 78 years of age, with diastolic heart failure and kidney problems (among other things, but those were the primary issues). She was my patient for 3 admits over 28+ days. We simply could not balance the needs of her failing heart with the needs of her failing kidneys. At the end, we decided we had reached the limits of our capacity to help her and she was very near death’s door. We needed to enter a partnership with her and her family to determine how aggresively to continue treating her and what we could actually offer to help her. Dialysis would not help. It would be a very short term fix with no chance of meaningful recovery. The patient and family asked for it and we explained this. It took some time to accept it. We then conferred with the nephrologist and she confirmed our thoughts. Knowing she was dying, she only wanted to go home and be with her dog and die at home, with her family. But if we discharged her she wouldn’t make it a kilometer down the road before dying in the passenger seat of the car. She and the family were irate – first we couldn’t help her, now we were “refusing” to let her go home. We needed to deepen our partnership to come to the best mutually satisfactory decision. Ultimately, I personally placed a dialysis catheter in her jugular vein for palliative dialysis – just enough to tank her up so she could last a few days at home before dying peacefully. But making sure she understood that was the extent of what we could do and that she would be OK with that and still wanted the intervention required a partnership. Only through my extensive rapport (she was my patient longer than anyone else on the team, resident, physician, or pharmacist) and the support of my team did we ultimately reach the conclusions and understandings we did and managed to send her home to fulfil her final wish.
To varying degrees that sort of partnership is not only commonplace but the norm in medical care. Just because it can be skipped at times with similar outcomes doesn’t negate the necessity of it. And just because many outpatient clinic cases are much more cut and dried doesn’t mean there isn’t a place for a partnership between the patient and physician. That plumber who tells me I need a widget I’ve never heard of and that it will cost me $XX (money is an issue in the US, but even in Oz the money in my widget example would be analagous to the costs in time, discomfort, and inconvenience) better establish a partnership with me to explain why, what, and justify the cost in order for me to feel comfortable with having it done. Otherwise I’d be a stupid consumer and in the cases where the outcome would be the same either way, I would have been lucky to arrive at the right answer for the wrong reasons.
Okay, to summarise, the doctor supplies all the medical details regarding the diagnosis, prognosis, and treatment, along with his recommendations. The patient fills in the personal details after which the doctor may need to change or modify his recommendations. The patient can then decide either to go with doctor’s recommendations or choose another path. The basis for choosing another path might be religious, philosophical or, indeed, just irrational. The doctor need not go along with the patient’s decision if it involves some action on his part (ie futile surgery).
I guess that can be seen as a shared partnership. Perhaps it’s just bringing human warmth and understanding back into the medical consult and swapping diplomacy for paternalism.
Unless I’ve still missed something.
@BillyJoe,
“Unless I’ve still missed something.”
Yes, you have missed something, just as I had before I read this book. The devil is in the details, in the unconscious biases inadvertently introduced by the doctor by the way he presents the information, in the complicated psychology of decision-making, in the difference between what the doctor says and what the patient hears, etc. etc. The book is a real eye-opener; I hope you will read it.
I agree with Dr. Hall (and I will be reading the book – I am currently about 25% of the way through a book called “Medicine, A Love Story” by Gene Stollerman which I would already highly recommend…. perhaps after I finish it I will write a review that Dr. Hall and the authorship here would be willing to post up:-D).
The devil is in the details. It does require a partnership, even for more mundane things. And of course for less mundane, as I explicated.
Furthermore, there may be multiple reasonable courses of action for a patient – only in uncommon cases is the “right” decision objectively clear cut. And having a partnership not only allows the patient to better understand and rationally decide on an optimal course of action for him or herself but it allows the physician to better appreciate the patient’s needs and desires.
Another anecdote, this one personal:
At one time I was extremely competitively fit (doing a year of core rotations will quickly disabuse one of the ability to stay extremely fit) and I had torn a ligament in my left shoulder (the glenoid labrum, as it turned out). Physical exam demonstrated it but an MRI showed that I had a somewhat rare tear – rather than being completely torn or torn from one side as is common, it was torn in the middle, thus making a “tent” shape. Nonetheless it caused me pain and prevented me from surfing, lifting weights, and long cycling rides.
Since it was a minor tear and in the middle, physical therapy was a viable option for recovery. I would have to eschew all upper body physical work save my progressive physical therapy and after a year, I was told, would have somewhere around a 70-80% chance of a complete recovery.
Surgery was the other option, but as we all know there are risks with surgery which I won’t waste everyone’s time here expounding on. Additionally there was no guarantee that the surgery would fix the problem and I would still have to do physical therapy, inevitably lose muscle mass (which I still haven’t fully regained exactly 3 years later), and I would have at least 5-6 months before being able to do upper body exercise and I was told at least 6-8 before I could surf again. But there was a higher chance of succes in a shorter time frame. Oh, and I am allergic to narcotics, so I could not take narcotic analgesia making pain control more diffficult.
So what would be the non-partnership course of action BJ? As a physician, I would know that non-invasive techniques are always preferred and that, at a simplistic minimum, PT for a year has zero chance of death, but even routine outpatient arthroscopic surgery still has a non-zero chance of death or severe morbidity. By your outlook the answer is extremely straighforward – any chance of death for a similar outcome is absolutely not worth the risk. Right?
Want to guess what I opted for?
To me, a 20% chance of still needing surgery after a year of losing out on my favorite activities was not worth it. I wanted the surgery and I knew I would be aggresive about my rehab and that I could handle the pain with narcotics (well, I was mistaken about the last part and I have a new sympathy for my post-surgical patients as a result – I have never in my life, before or since, felt such unending pain). My surgeon didn’t want to do it – in fact, he only mentioned the surgery in passing and did not recommend it at first. But because I happened to work in the same ER where he took trauma call at the time we had an established rapport and I was able to convince him that surgery was in fact the better option for me.
There is obviously more detail, but I hope you can grok what I am trying to get at. And this would be one of those “routine outpatient office visit” type encounters, not even an end-of-life palliative dialysis sort of issue.
The thing is that if the physician doesn’t even consider that these sorts of things are important, (s)he will inevitably imbue the consultation with his/her values and priorities and completely skew the perspective of the patient thus (potentially) negating the patient’s autonomy without even realizing it. Diplomacy in advising is certainly part of it. And absolutely there are cases when a physician should hold his/her ground (No, I will not prescribe you antibiotics for your flu). But a partnership allows the physician to not only relay information better to the patient, but allows the physician to better understand the values, wants, and needs of his/her patient to make the best possible outcome for the patient. It deepens the ability of the physician to be both a competent science based practitioner and a “healer” (I hate that that term has been co-opted by the sCAMsters along with “holistic”) and still retain high patient satisfaction (which as we know is independently associated with worse patient outcomes when that is the sole goal and metric being chased).
Of course, I am but a lowly (newly minted) 4th year medical student with very limited experience (which is why I resort to anecdotes like these) so I may be way off base here, but hopefully I am not talking out of my a$$ too much here.
Oh, I forgot to mention – an important confounder is that I would be having the surgery around 1 month before leaving for the land of Oz to start medical school and would only be able to have 2 or 3 PT session before leaving. This is something the orthopod was extremely reticent about, knowing that good PT follow up was absolutely essential for a good outcome. He initially refused to even do the surgery, citing his legitimate concerns for a frozen shoulder due to lack of PT, until I was able to convince him that I really would follow through on my own, in a foreign land, and whilst just beginning medical school. You really do need a partnership for that, and the physician needs to be willing to enter into that partnership as well as the patient.
As it turned out, I was extremely aggresive in my PT and was surfing again less than 5 months after my surgery. When I saw the orthopedist about 11 months later (another story) he was literally shocked at my outcome and progress, especially surfing less than 5 months after the surgery (for my birthday that year). He half-jokingly asked if he could write about me as an anecdote for his practice since my results were not typical.
[...] Beyond Informed Consent: Shared Decision-Making|Harriet Hall|Science-Based Medicine (sciencebasedmedicine.org) [...]
Perhaps I do need to read the book.