Beyond Informed Consent

7/29/2019 Beyond Informed Consent

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Beyond Informed Consent: SharedDecision-MakingPublished byHarriet HallunderBook & movie reviews,Medical Ethics

Comments: 2

Happy New Year to all our readers! Today marks the completion of 5 years of SBM and the beginning

of year 6. My contributions, at one a week, have now reached a total of 260. My first post on this blog,

5 years ago, was a review of an important book about science and alternative medicine,Snake Oil

Science.This year Id like to start with an important book about communicating medical science to

patients,Critical Decisions, by Peter A. Ubel, M.D.

I was wrong about informed consent. I thought informed consent was a matter of explaining the risks

and benefits of treatments to patients so they could decide what they wanted to do. That was nave,

simplistic, and misguided. Ubels book has radically changed my thinking about how doctors should

interact with patients.

Paternalism in medicine is dead. Patient autonomy rules. We respect the right of patients to determine

their own treatments, even if their choices seem unwise to us. Patients should do what they want. But

theres a problem: patients may not know what they really want. Emotions and unconscious and

irrational forces influence their medical decisions. Preferences can change from one moment to the

next, and they can shift with subtle changes in how treatments are described and how the issues are

framed. Doctors need to develop a better understanding of what is going on in their patients minds,

of how the way they present treatment options can inadvertently influence patients, and of how they

can participate with patients in a process of shared decision-making. Its possible to provide direction

without paternalism.

The biopsy shows prostate cancer. The doctor explains that the risk of death in this particular case is

small and the options include watchful waiting instead of surgery. The patient may hear that as I

have cancer and youre not going to do anything about it?! Or be so alarmed (Omigod, Im going to

die) that he is unable to process any further information. He is told the risks of surgery, but he cant

imagine what it would really be like to live with impotence or incontinence. He may over- or under-
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estimate his risk of side effects and how they would affect his life. The doctor typically uses medical

words that the patient doesnt understand, and overwhelms him with abstruse details about Gleason

scores and atypical cells and non-aggressive appearance on biopsy. The urologist often doesnt

recognize the emotional impact of the diagnosis and doesnt respond to the patients feelings. He asks

if the patient has any questions, and when the patient doesnt ask any, he is reassured that the

patient has understood. But the patient may simply be confused, scared to death, and unable to

express his concerns.

What Would It Be Like?

Young people dread the limitations of old age but research shows that happiness actually tends to

increase with age. People often think they would rather die than be paralyzed, go blind, etc. because

they cant imagine what it would really be like. They think they would be terribly unhappy. But in

reality, people who face those challenges soon adapt to them and are just as happy as they were

before. People mis-predict their own long-term emotional reactions to everything from losing a leg to

winning the lottery. Winning millions makes them ecstatically happy at first, but as time passes, they

end up no happier than people who didnt play the lottery. The initial emotional impact of an injury or

illness is strong, but it wanes over time. People underestimate their emotional resilience. Talking to

others who have faced the same challenges may help them to judge more accurately what it would be

like for them. In one anecdote in the book, a patient categorically rejects surgery involving a

colostomy but doesnt think it through to realize that he would rather live with a colostomy than die.

Making a quick judgment based on an initial emotional reaction is unwise

Dont Make Families Regret Their Decisions

Families may be reluctant to authorize Do Not Resuscitate orders when the doctor tells them the

patient is dying and resuscitation would be futile. The current practice is to explain the situation to the

family and let them (make them) decide. But Ubel says:

Resuscitating a dying patient is not the worst thing we doctors can do. Making a family regret their

decision is far worse in the vast majority of these conversations, my recommendation [for a DNR


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order] was met notwith resistance but relief. They didnt want their loved one to suffer, and they

knew that CPR would only prolong their pain. But they didnt want to be the ones who made that

choice. My recommendation helped them by sharing the decision-making burden.

Experiments in Decision Psychology

Research has illuminated how irrational people are at making decisions. If they are trying to get a red

jelly bean, they prefer to pick from a bowl of 100 jelly beans with 10 red ones than from a bowl of 10

with one red one. The odds are exactly the same, but somehow the larger bowl seems like it ought to

offer more chances, even though they understand on a rational level that it doesnt. In a hypothetical

scenario where a virulent flu will kill 10% of the population and a vaccine will prevent infection but

carries a 5% risk of death, people prefer inaction with a higher risk of death to taking an action that

results in half the risk. On the other hand, if patients are asked to choose between watchful waiting for

a cancer than has a 10% chance of eventually killing them and taking chemotherapy that will

eliminate the cancer but kill 5% of patients from side effects, almost no one chooses to forgo the

treatment that reduces the risk by half. Apparently there is some kind of unconscious bias against

vaccines as compared to chemotherapy (?!). In a scenario where watchful waiting led to a 5% chance

of death and surgery carried a 10% risk of death, most people preferred the surgery, preferring to

take action even when that action was more likely to harm them. They just wanted that cancer out of

their body.

When given a statistical prognosis like a 10% chance of survival, patients tend to think it doesnt

really apply to them, to think there is something about their case that ratchets their chance up to 20%

or even more. Doctors, too, tend to over-estimate the chances of the patients survival in their

unconscious desire for optimism.

The way information is framed is influential. Patients prefer an operation when it is presented as

having a 90% survival rate to the same operation when presented as having a 10% mortality rate.

And the power of a doctors recommendation is very strong. In another experiment, patients were told

that the risks of a hypothetical vaccine outweighed the benefits. Then they were told that their doctor

recommended it, but that their doctor didnt know any more about the vaccine than they did. They


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chose the vaccine because the doctor recommended it, unconsciously feeling that the doctor knew

more than they did even when they had been assured he didnt.

Then there is the power of stories. For a surgery with a 75% success rate, telling one anecdote about

a success and one about a failure seemed to cancel each other out, but 3 success anecdotes and one

failure anecdote reinforced the 75% statistics and made people more willing to get the surgery, even

though the anecdotes were about specific individuals and did not change the information about the

actual percentage of people who would benefit.

Telling patients there is a 17% risk of side effects or showing them pie charts or graphs tends to

confuse them. Pictographs with 100 squares and 17 filled in with a different color to represent side

effects are far better at reminding them of the 83% who dontget side effects.

Decision Aids

These decision psychology experiments provide clues, but it is still necessary to test every approach. A

number of decision aids have been developed, such as videos showing what it is like to live with a

colostomy; some patients are reassured to see how real people have adapted and how little it has

affected their lives, others are repulsed by seeing a colostomy stoma. We need to test whether each

component of the decision aid does more harm or good. We want to inform, not influence.

Decision aids give patients the information they need, but they dont always change behavior.

Informed patients must also be prepared to interact successfully with their doctors. Ubel provides

helpful tips and guidelines for patient empowerment and better joint decision-making.

What Does Patient Autonomy Really Mean?

Every doctor has been asked What would you do if you were me? What would you do if it were your

mother/wife/daughter? What do you recommend? Sometimes patients really want the doctor to

decide for them, either because they just dont feel confident about their knowledge and judgment or

because they dont want to feel responsible if something goes wrong. Doctors are told not to make

those decisions, but to give patients the relevant information and leave the decision to them. But

heres a thought: what if the patient autonomously decides he wants the physician to choose for him?


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Does that count? Can he delegate and still be autonomous? What are the legal implications? Would he

have to sign over a power of attorney for health care to the physician? Would that even be legally

acceptable? We need to grapple with this and other thorny issues.

Conclusion

Oliver Wendell Holmes said:

Mans mind, once stretched by a new idea, never regains its original dimensions.

This book stretched my mind, and it feels good to know that I have learned something and have

improved my way of thinking. Admitting that one has been wrong should not be a source of shame,

but a source of pride because one is now more right. It is one of the great joys of being a critical

thinker.

Patient autonomy is good, but shared decision-making is better. The goal of truly informed consent

with no hint of bias or coercion is a worthy one, but its not enough. The doctor and patient should

cooperate in a joint decision-making process that incorporates the doctors medical knowledge and the

patients values and preferences. Its difficult for a doctor to understand those values and preferences

when the patient himself may not consciously understand them or be able to articulate them. If the

doctor can develop a deep understanding of the patients values and preferences, then he can tell him

what he thinks he should do without being paternalistic or coercive. Its complicated, and our efforts

to improve the situation must be tested with the scientific method to see if they are as effective as we

would like to think. If doctors and patients could all read this thought-provoking book, we would be off

to a good start. Highly recommended.

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Beyond Informed Consent