(This is the second part in a series on shared decision-making. Click here for part 1)
A textbook case
I recently attended a cardiology conference where a speaker proudly presented a case of shared decision-making. It involved a young female athlete who had survived a cardiac arrest and was diagnosed as having an anomaly in her heart conduction system, putting her at risk for arrhythmia during exercise.
She had received an implantable cardioverter-defibrillator and the decision in question had to do with whether she could resume sports activities or not. The guidelines issued by the American Heart Association recommend that activities be strictly limited in intensity, but the evidence to support that recommendation is scant.
The cardiologist told the audience that he and the young woman met several times and had long conversations. He got to know her very well. He took the time to explain to her everything that medical science has revealed about the potential risks of a future cardiac arrest under the circumstances. Together, they imagined various scenarios of what might happen if one course of action or another was taken, and what impact the athlete might personally experience in terms of overall quality of life.
Finally, they jointly agreed on a decision. (I can’t remember which it was—i.e., whether the athlete agreed to curtail her activities or, on the contrary, decided to resume the competitive sports which she loved.) What’s more, the cardiologist mentioned that family members were initially not all completely on board with the shared decision but, after additional discussion—the “process of accommodation” having been extended to parents, brothers, and sisters—they all came to a collective agreement.
This is a textbook case of shared decision-making. It has all the elements of SDM and, as far as I’m concerned, many of these elements are praiseworthy. That the physician took into careful consideration the concerns of his patient and her family, and that he spent as much time as he did to get to know them personally, is indeed admirable and an example to emulate.
At the same time, to insist that that case was one where the medical decision was rightly shared is highly problematic or, at best, renders SDM applicable to only a minuscule fraction of health care encounters.
Scratching below the surface
First, note that it is unlikely that the cardiologist cared much, one way or another, about which decision the conversations with the patient would ultimately lead to. In situations where there is sufficient uncertainty vis a vis the right course of action, physicians can remain relatively dispassionate about the various options to be considered. Engaging in shared decision-making seems plausible.
In contrast, imagine a surgeon who discusses treatment decisions with a Jehovah’s Witness patient who is anemic from gastrointestinal bleeding. The question of shared decision-making would likely be viewed in a different light. If the physician has a very strong opinion about what the best course of action is, the “process of accommodation” of SDM may seem wishful, if not idiotic.
Second, the cardiologist may have sincerely believed that the decision reached was “shared,” but there is no way to verify that claim as fact.
How can one tell apart a shared decision from a decision where one party persuades the other who is willing or eager to be persuaded? “Whatever you say, doc!” is commonly uttered by patients irrespective of the diligence with which the physician may be trying to engage them in the decision at hand. Many patients may be hard-pressed to affirm with certainty whether their perspective and concerns were simply taken into consideration, or whether they were actually decisive in-and-of-themselves.
But the distinction is critical and, as I will next demonstrate, it should be clear that medical decision-making properly belongs to the physician and not to the patient.
What it means to be a patient
As we saw in the previous post, the contemporary bioethicists who are advancing the idea of shared decision-making do so because they hold the notion of patient autonomy as supremely important. But this elevated view of patient autonomy and self-determination reflects a fundamental misunderstanding of what it is to be a patient.
Patients are by their very nature impaired in their autonomy and capacity for self-determination. Etymologically, that is the meaning of patient, which is the antonym for agent. A patient is precisely one who can no longer act as an agent and who, because of illness or disease, has lost some degree of self-determination.
That loss of self-determination is obviously manifest in the case of a major sickness or trauma, when the patient can’t walk, or breath, or think straight, or think at all. But, at some level, it is also true with minor illnesses. When I have a cold, I am to a small degree less autonomous than I would be if I did not have the cold (and not just because it’s man flu!)
And that loss of self-determination may even be present when patients are seemingly in perfect command of all their faculties, physical or mental, although here a distinction must be made:
On the one hand, the young cardiac arrest survivor who was confronting a “return-to-play” decision with her cardiologist may have been perfectly capable, physically and rationally, of deciding for herself whether to play sports or not. However, to the extent that she was choosing the best option, she was not acting as a patient but making for herself her own treatment decisions. The cardiologist was simply providing information.
There’s nothing wrong with providing information about medical knowledge, but it should be clear that when doctors perform that function, they are not engaged in medical care properly-speaking. In such situations, being a physician is incidental to providing information. Depending on the nature of the information, it could be equally well provided by an experienced nurse, by a pamphlet, of by Dr. Google.
On the other hand, to the extent that the patient chose to involve a physician, she was implicitly transferring the decision-making authority to the doctor. There’s nothing wrong with that either. In fact, as I mentioned above, patients normally recognize that, no matter how much information they have, and no matter how rational and in control of their faculties they may be, they are ultimately the subject to a treatment decision. Being on the receiving end of an action is the other aspect of the etymology of “patient”. And being subjects of decisions, patients can hardly be expected to be objective about them.
What it means to be a doctor
Now, it is true that, many times, patients delegate decisional responsibility with a great deal of ambivalence, or even reluctantly. That, too, is natural. Each one of us naturally wants to hang on to our autonomy and sense of self-determination. But, at the end of the day, patients seek the help of doctors because they recognize that doctors are in the best position to make healthcare decisions, not only because doctors have knowledge and experience that patients do not have, but also–and perhaps primarily—because doctors are detached from the experience of illness and can therefore be wiser judge of which decision is best.
Of course, giving the physician decisional authority doesn’t mean giving carte blanche to do as one wishes. Understood properly, the role of the doctor is to act on behalf of the patient to achieve or maintain health. And because health pertains to individual persons, it has a dimension of particularity. The doctor has precisely to act on behalf of Susan or on behalf Jim, and not simply on behalf of “a 43-year-old diabetic man with an LDL level of 180.”
We, as physicians, are not caring for abstracted features disconnected from the personality and circumstances of the patient at hand. That is why knowing our patients personally is so important—although, admittedly, it is more important in some situations than others: an emergency room doctor treating a broken arm does not need to have as deep a personal knowledge of the patient as a generalist who confronts an elevated PSA in a 72-year-old man.
Undermining the relationship
Shared decision-making was conceived as a check against the paternalistic attitudes of doctors. On the surface, it may seem to promote a dialogue between patients and physicians that is too frequently neglected when doctors are inordinately self-important. However, SDM only muddies the waters of clinical decision-making and weakens the bond uniting patients and doctors.
By diffusing responsibility—and therefore accountability—for medical decisions, SDM creates ambivalence and widens the distance between the two parties involved: it promotes a “hands off” attitude on the part of physicians while forcing on patients and their families a role they are neither capable of carrying out nor willing to take on.
[This is the second part in a series on shared decision-making. Click here for part 1. Stay tuned for part 3 or subscribe to the mailing list]
“…because doctors are detached from the experience of illness and can therefore be wiser judge of which decision is best.”
Perhaps if doctors were truly detached, this might be true. But doctors can be biased and subject to financial and performance goals that routinely inform their decision-making. Patients always have the right to decline procedures, treatments, and therapies based on their hopes, fears, and their understanding of their conditions. The idea of doctors imposing medicine on patients makes me uncomfortable. And the more esoteric or complex the medicine, the more important for patients to have some understanding of the recommended remedies, potential outcomes, and impacts on their lives. This can only come about through an educational process, normally via conversation. Ideally, the patient will then say, “Ok. Let’s do this.” This would be shared decision making.
Hi Deb,
“But doctors can be biased and subject to financial and performance goals that routinely inform their decision-making.” Yes, you’re absolutely right, but in that case they are, in a way, bad doctors, or less perfect than they could be.
I’m not saying that all doctors are perfect, or that any doctor is perfect, or that doctors should be expected to act ideally all the time, but in this piece I am outlining generally doctoring in its essence. If don’t have a notion of what the essence or ideal of doctoring looks like, it’s going to be very hard to improve on what we now have.
I also was careful to state that doctors should persuade patients. Persuasion is not imposition. It implies that doctors will definitely need to do what it takes to gain the trust of the patient, including explaining the rationale of their recommendations, etc, and that patients absolutely have the right to reject the doctor’s recommendation. Doctors have to gain the consent of the patient. That’s what “Ok, let’s do this” represents.
Very nice discussion Dr. Accad. I knew most of my patients for many years. I always had the attitude that I should try to explain to them their problem in layman’s terminology so that they could be motivated and to some extent to decide for themselves. It always surprised me how nevertheless they tended after all that to want my judgment as to what they should do.
On the other hand our medical leaders completely ignore the one area where shared decision making should prevail, namely the area of the financial cost and value of what we recommend.
Thank you, Anthony, I agree with you 100%. Discussing costs is not easy when prices are so opaque in our current system. Price opacity is a major problem.
Its an interesting thought, but in the case of a mentally competent individual, to what extent is being in need of expertise really equivalent to “impaired in their autonomy and capacity for self-determination.”
I lack the technical expertise to decide on my own between a coronary graft and a stent, or whether a drug-eluting stent is appropriate. Likewise, I cannot diagnose why my car makes that funny noise when I hit the brakes. Am I impaired and in need of someone to make decisions on my behalf when the issue is whether to replace or resurface the brake disks? Should the mechanic make that decision on my behalf, or discuss with me how long I plan to keep the car and the extent to which squealing brakes upset my digestion?
I think that the critical and irreplaceable input that forms the basis of shared decision-making is the value placed by the patient on the individual risks and benefits associated with the competing paths forward. No one can decide on someone else’s behalf whether incontinence is an acceptable price to pay for a 25% reduced chance of dying of prostate cancer, or in the highly publicized case of flibanserin, whether 3 episodes of syncope each year are an acceptable trade-off for 12 more orgasms.
I can’t even order a meal off the menu for my wife. I can’t begin to image someone trying to decide on her behalf whether to have a prophylactic mastectomy.
You make a very good point that human beings are dependent on one another on many different levels and lack of knowledge in any area is, in a sense, an impairment in autonomy. But the distinction between the context of, say, a car repair and the medical context is that in the medical context the impaired autonomy is not reducible to a lack of knowledge. In other words, even if I have all the knowledge that my doctor has, I may still be unable to make the best decision for myself and must rely on him or her to make it for me.
Now the difficulty in accepting my viewpoint is that not every decision in a medical context necessarily falls in that category. To start with a silly example, suppose that you come to my office and ask me what the best Sushi place is in San Francisco. I may recommend that you have dinner at Ibizu. That would not be a medical decision, even if you decide to pay me for that recommendation.
More realistically, suppose that you ask me what are the objectively measurable risks and benefits of taking a statin based on your measurable characteristics (LDL, BP, calcium score, whatever). Suppose that I give you all the info that I have, and you make a decision that the benefits are worth the risk and you start taking Lipitor. What’s happened here, in my mind, is not strictly “medical care” but a simple transfer of knowledge, which you could have obtained many other ways. Nothing wrong with that, and it’s probably worth paying me something for it but I want to stress that it is distinct from the situation where you come to me and I ask me to make the decision on your behalf. The latter is what medical care really is or what medical decisions are all about.
In practice, “medical activities” will be a mish-mash of commodity transactions (transfer of knowledge or technical fixes) and personal transactions–decisions made by the doctor on behalf of the patient. It’s important we don’t lose sight of that and force all medical activities into the pattern of transfer of knowledge.
One last thing: I don’t believe that “cost-benefit calculations” are a realistic model of how people make decisions.
James Noble, MD, shares his experience:
> I saw my first AIDS patient in 1982. By 1989 I was up to 500 or so and had a busy clinic in Boston. My usual visit then was with a fairly sick, thin, gay man and we would go over and over AZT or not, or AZT + ddI, or ddI alone, and on and on. These patients welcomed SDM, in spades.
>
> Then I met a young woman. She found out she was HIV+ when her baby died of AIDS. She herself wasn’t sick. I tried my standard “you could do this, or you could do that” routine on her, but by the third visit I could see she was getting angry with me.
>
> “Is something the matter?”, I asked , in my best biopsychosocial model style.
>
> She slammed a fist down on the metal tray which flew across the exam room. “Goddamnit, you’re the doctor! If you don’t know what to do, I don’t have a chance!”
>
> I was only 38 then, and now, 29 years later, I’ve learned a few things. Like, being the doctor the patient needs you to be.
Well, that’s a darn good reason for avoiding medical care, then. No, having a physical problem or risk for one doesn’t strip an intelligent person of their ability to make decisions. I could prove this by whacking you on the knee with a stick, if you were handy. I am sure I am not the only person who has had family members both terribly harmed by malpractice and spared from harm by refusing a bad recommendation.
Besides, you are defining as “medical decisions” not only whether a device shall be shoved into one’s body and what device, but what one may then do for a living or with one’s free time for the rest of one’s life, i.e., effectively every aspect of life. This is allopathy-as-religion: you are not just a technician, but a priest whose opinions on every subject must be obeyed. Count me as an unbeliever.
Great post! According to me, SDM is supported by evidence from 86 randomized trials showing knowledge gain by patients, more confidence in decisions, more active patient involvement, and, in many situations, informed patients elect for more conservative treatment options.
How is shared decision making different than an informed consent model? Would you advocate that informed consent is any less necessary because your judgment should be the authoritative and the decisive instrument to deliver care?
I can’t imagine you proceed to the cath lab without providing at the very least a declaration that there is no guarantee that the procedure will be successful. So help me understand why we shouldn’t have these informative discussions with patients where there is no clear biologic determinant or collective evidence to support definitive conclusions of benefit and risk. I realize there are limits to these discussions. You don’t discuss the myriad of decisions that are made between the numerous procedural steps of cardiac catheterization or whether you are going to cannulate the radial artery or femoral artery and which contrast agent you are using or the numerous other decisions. But the broad strokes deserve discussion and the limitations to our knowledge should be transparent to the patient so they understand where there is uncertainty and how they bear the weight of the decision.
Consent is a given. Those who proposed shared decision-making had something beyond informed consent in mind (see part 1). I have said nothing against having conversations with patients and informing them of what a treatment entails, and doctors getting to know their patients better though conversations. But there’s a distinction between having a conversation and informing patients and “sharing decisions” which, as I tried to point out, is an incoherent concept.
Consent for invasive procedures, like for sex, is only meaningful when voluntary, which means that one could say no. If you are of the opinion that the patient class is too mentally inferior to question your orders, then your “informing the patient of what the treatment entails” is likely to be incomplete and their signing of the paper coerced. Moreover, I bet that when someone is gorked by one of your procedures, you deny legal responsibility: she signed the informed consent form, so if she suffered a listed complication it’s on her. How can that logically coincide with your view that she did not have the agency to refuse or, therefore, truly consider the procedure, once you had “ordered” it?
Here’s another take on the issue that I wrote in an essay a few years back.
“The contrived “patient centered care” concept advocated by health care leaders leaves individuals as much as always under the control of the medical care establishment and third party payers. Converting passive patients to real consumers of medical goods and services could be one key to improvement in the health of our population through increased awareness and participation in good health practices. Good physicians understand that time spent communicating with and educating their patients is a major key to achieving “compliance” with their recommendations. However what would be involved here would be a reversal of roles.
Healthcare advocacy groups such as the ”Trust for America’s Health” contend that the great majority of chronic illness in our country results from unhealthy lifestyle behavior and that this, rather than the traditional medical treatment system, should be the major focus of improving public health. Many experts have pointed out that preventive medicine done through the standard medical care system does not save money since the cost of numerous negative tests often outweighs the economic value of illness prevented and often has somewhat limited impact since the emphasis is really more on finding early disease rather than real prevention. Quoting one blog with a preventive health focus, commenting on this debate, ” A better solution would be to look for preventive steps outside the hospital or doctor’s office. This goes back to some of the recommendations issued by the TFAH (Trust for American’s Health) report. Investments in wellness programs, health education and counseling could yield better results. Much could be achieved by grassroots movements and community-based initiatives if done the right way. That would still require financing, but the dollars spent could go a whole lot further.”
But must it require movements, group initiatives and government funding to incentivize individuals to interest and educate themselves about their own health? Are such mechanisms needed to interest consumers in their food, shelter, transportation, communication or entertainment? Do modern “health care planners” really want “patient centered care” in which patients take more of a role in decision making? One would think not since they envision “Accountable Care Organizations”, large tightly organized medical provider groups supervising the physical well being of geographical population segments, perhaps competing with other similar provider groups. Such a vision implies full central control of funding and implementation of medical care. In this scenario individuals remain “patients” with “medical homes”. “Patients” undergo tests and treatments in keeping with protocols devised by expert panels and authorized by federal agencies. Orders are given which the “patient” is to follow at the risk of being “non-compliant” Consumers in the free market, on the other hand, decide what it is they want and need and choose from myriad available options offered by providers competing to provide the best value. Which alternative has the better chance of producing an informed public and a dynamic health care industry striving to innovate?”
Michel, I see your point. It seems to me your critics are getting confused about, on the one hand being forced to have some treatment or asking patients to suspend their judgement, and on the other hand having them seek your council.
One type 1 diabetic patient of mine told me that she felt that her road to health success was to find a doctor she liked and trusted and then do what he recommended. The funny thing is that she consistently resisted my advice to avoid excessive hypoglycemia because she feared hyperglycemia so much. Nevertheless we had a long trusting relationship and she always listened to my sometimes passionate entreaties.
For my personal medical care, I choose doctors who I consider have proper expertise but also with whom I have established a trusting relationship and therefore value their council. And so, knowledgeable as I am, I generally do as I am advised. It is hard to be objective about oneself.
Thanks, Anthony. Yes, if people are sufficient autonomous to get into “shared decision-making” they should also be sufficiently autonomous to reject any decision a doctor wants to make!