The issue of informed consent is one of the many points where legal concerns and medical concerns intersect, bleeding into one another. It concerns the future, the unknown, the possible, the probable, the miraculous, and the catastrophic. At this stage, when seeking consent, right before care is rendered, the provider and patient have entered the realm of the purely speculative.
The interchange can mold the relationship, and possibly even alter the outcome of care. In its idealized form, the seeking and granting of informed consent is a bonding ritual, a balanced, cooperative effort, bravely undertaken with optimism, understanding it may utterly fail.
For some patients, the process has a direct and meaningful impact. For other patients, the process doesn’t even happen. It can be a charade, run through by rote, a move along a conveyor belt of treatment, with care rendered as a matter of routine, with both providers and patients blind to the others’ intentions and expectations. Informed Consent is mythic, an intermingling of the real and the imagined, a fusion of the concerns of law and medicine. Because the issue straddles these conflicting disciplines, it provides insight into the inherent tensions between them, and the contradictions and paradoxes that result when they clash.
The notion of the idealized process—that perfect confluence between education, understanding, and the exercise of free will—emerges from opposing traditions in medicine that are at odds with one another.
In practice, the informed consent process often imposes itself as a nuisance mandated by the legal system, a hurdle to be overcome, or routinized in a way that drains it of meaning. It can be literally form without substance. Or formidably substantial.
On the day I arrived at the Hospital with my wife for the delivery of our first child, the admitting nurse handed me a stack of consent forms I had written and jovially said in sing-song, “Now, here’s where you sign your life away.”
The nurse had invoked a cliché intended to mock mortgages and other intricate contracts for saddling people with debt; a light-hearted, half embarrassed dismissive apology for presenting the forms which were expected to be signed, but not really read.
The nurse didn’t realize how familiar I was with the detailed catalogs of catastrophes contained in these documents, nor did she realize I was also the Risk Manager, responsible for reviewing daily reports of injuries and near misses in the facility, overseeing the self-insurance program, dealing face to face with people who had been harmed in the course of treatment, or their survivors. Hospitals are dangerous places. The nurse wasn’t thinking about the literal meaning about what she had said.
Providers would often ask me whether they truly needed to get consent for certain specific types of medical procedures. One day, the Director of Nursing stopped me in the corridor and asked for a complete list of procedures that required consent. “Like, do I need consent for a series of x-rays? Do I need consent to test for a simple blood test? What if I’m testing for drugs? Do I really need consent?”
“Yes,” I said, “Absolutely. And the answer is going to be yes for everything—no matter the procedure– because you need to get consent for every single aspect of care.”
“That’s not what I meant.”
“I know. Most consent forms are intended to serve a function that hospital patient gowns do not. They cover a specific area of legal exposure. What you really want to know if whether you can skip the step of having a form signed by the patient. And whether we will get sued if we skip that step, mostly because you would like to skip it at every opportunity. Right?
“I can tell you the risks, benefits, and alternatives to getting a consent form signed every time you have a patient encounter. And I won’t make you sign a form.”
The healthcare lawyer’s role in advising providers role mirrors the informed consent process.
There was a certain irony in the way the question had been posed. Her interest was centered on the need for a form, but she would have been just as happy to cut corners on some of the other drudgery associated with getting consent, because most of the time, it is perfectly obvious what the patient needs and what the staff should be providing. The parties frequently understand their respective roles without a useless exchange of words or paper. It is so obvious that the staff will know exactly what to do, even when patients are unconscious and have no family or friends to speak for them. In those instances, consent can be presumed, most of the time.
A written document to deal with general consent is fairly easy. It is also fairly meaningless. The first time I wrote a general consent to hospitalization, which addresses the amorphous notion of consent—as opposed to informed consent– I came up with the following:
“I consent to care and treatment by my physicians and hospital staff. Medicine is not an exact science and no one promises a good outcome. I understand the risks, benefits, and alternatives of this care and treatment. I may ask questions at any time. If care or treatment is complicated, it will be explained to me.”
It worked well enough for many years—until I picked enough experience to realize the entire paragraph had no practical effect. One could imply basic consent to be treated from the mere fact of the patient’s simply being there and not protesting. And the form offers no evidence of informed consent. It only recites an obligation the caregivers have anyway, with or without the form. It creates an aura of written consent that relies on trust. Nothing changes, whether the patient accepts the paragraph or not.
So, I dropped the paragraph from the standard hospital admission documents. I didn’t see the point in wasting ink and paper in service of a myth.
And that worked just as well for just as long. Then one day, the reviewers from an accreditation agency challenged the hospital’s lack of documented patient consent. I explained our position, which seemed straight-forward. But the reviewers weren’t buying it. They wanted a recitation about consent and they wanted to see a signature.
I restored the old language. It was form without substance, but the reviewers were satisfied. In some sense, it was the legal equivalent of a placebo, but like many medical placebos, it worked.
A claim for lack of informed consent is a different animal, born of cross-breeding two different torts, battery and negligence. The new tort grows out of the concept that the patient would have refused to have a procedure done had he or she known it was possible to get a serious injury– even when the procedure is performed correctly. Like patients who claim they would have chosen to live with an odd-looking nose had they known the surgical site might become infected, resulting in an odder-looking nose. Or, in the case of Helmer Bang– the legal precedent that introduced the whole notion of informed consent– the patient who would have refused prostate surgery and chosen to deal with a weak urine stream had he known corrective procedure would render him unable to father children.
The Bang case, decided in 1958, was the big bang of patient autonomy law. It marked a shift in the balance of power between physician and patient. The medical norm for centuries had been that the patient submitted their body to judgment and discretion of a physician who was endowed with near magical knowledge of the best course of action. A wide variety of intrusions, insults, and excisions might be permitted, even outright lies. But the medical norms of yesteryear, and with its wide degree of physician discretion, were based upon a more personal involvement between doctor and patient. Prolonged interviews generally took place in the home rather than the hospital.
The urologist in the Bang case was one of the leading practitioners of his day, none other than Frederick Eugene Basil Foley, whose name still echoes everywhere in modern hospitals in connection with the indwelling urinary catheter he invented, forever associating him with ubiquitous yellow bags and urine flowing through clear plastic tubes.
The state of medical practice at the time of the Bang case was demonstrated by the patient’s own testimony. Bang “admitted that he did not expect to tell the doctor what to do; that he had faith in him; and that he did not expect to tell him how to perform the operation. He said that he expected the doctor would operate to do what was necessary to right and cure his condition. He testified that he did not ask the doctor what he intended to do and left it up to him to do the right thing.” Dr. Foley couldn’t remember whether or not he told Mr. Bang the operation would leave him sterile, though that Foley knew well in advance. Bang v. Charles T. Miller Hospital, 251 Minn. 427 (Minn. 1958)
This kind of patient submission to physician authoritarianism was the norm in 1958. It might have been justified, at that time, from the way mere patient expectation plays a major role in determining outcome. Deeply ingrained medical traditions still lingered from the days when there was less science and much to be gained with hope. To this day, the power of naked belief—the placebo effect– is so widely accepted, medical research must be structured in ways that take it into account. Since the suggestion of a poor result might turn into a self-fulfilling prophesy, physicians used to afford themselves a wide degree of latitude in doling out bad news, or even suggesting there might be bad news at the end of best efforts. At worst, a patient might be spared anxiety and despair until the inevitable came to pass; a mercy if it happened quickly enough. Emphasis on positive results still informs medical practice because optimism promotes healing more often than science can fully explain, and patients commonly prefer comforting reassurance over stark honesty.
Physicians were afforded a wider degree of discretion in 1958, but the context in which they exercised that discretion was shifting. Physicians used to have to travel to the homes of their patients, and could only see a few in a given day. In the home, the physician could spend more time, observing and discussing, seeing the patient in his or her natural setting. The physician could gather more information, consciously or subconsciously, about family and personal interactions. And the physician was more likely to share the cultural and spiritual values of the patient, simplifying the discussions about care.
By intervening in medical practice in 1958, the law required doctors to violate an old professional taboo, and forced them to focus on the absolute worst things that could happen. The case established a limit to what had been untrammeled discretion.
The legal standards for getting acceptable informed consent generally include:
- The provider disclosed information in a way that met the community standard of care; and
- Based on that information, a reasonable person would gain a general understanding of the procedure, the medically acceptable alternative procedures or treatments, and the substantial risks and hazards inherent in the proposed treatment or procedures, as recognized by like providers; or
- The patient would reasonably, under all the surrounding circumstances, have undergone such treatment or procedure had the patient been given this information.
The legal part of the process is capped off with a written form expressing all of the above. Once the form is signed, it creates a rebuttable presumption that informed consent was obtained. In order to defeat that presumption, the patient has to demonstrate compelling reasons why he or she signed a form that wasn’t understood, or prove the form didn’t mean what it said. The patient bears a heavy burden to defeat the presumption. But a signed consent form isn’t the free pass most practitioners believe it to be. It bears some resemblance to a contract, but it is much more profound than the documents that govern ordinary business relations.
The law focuses on one part of the informed consent ritual– the part that relates to exchanging information for the purpose of deciding the course of treatment. But the ritual also serves to establish trust, and draw boundaries for authority. The patient is in pain, or terrified, or disoriented from infection or trauma—circumstances under which men have confessed to crimes they did not commit or renounced their gods. It is a level of coercion that would permit retraction of any other type of legal choice. A consent form isn’t like a contract, where you can negotiate the terms. It isn’t like buying a car, where you can insist on warranties. The risks, benefits, and alternatives aren’t going to change. It is a ritual, and may be largely symbolic. In the vast majority of instances, it conjures an illusion of choice where there really is none. It gives absolution in advance to the provider. It was the result of the patient’s own decision when there are terrible consequences for a medical intervention that was done correctly— for all medical interventions are full of potentially dangerous uncertainties.
To reiterate, the written consent form is supposed to document a discussion that has already taken place, an idealized process in which the physician sits down with the patient and explains the risks, benefits, and alternatives to a particular course of treatment. When it is done right, the discussion is collaborative and also includes alternative forms of treatment, and the risks and benefits of all the alternatives. The standard of care has to be met, which is to say, the disclosure has to match what all of the good doctors in the community are doing, and it has to include what a reasonable patient would need to know in order to decide. All questions have to be answered. After due consideration of all relevant factors, the patient makes a choice acceptable to the physician, expressed in a signed written document.
In the early eighties, when I first started practicing law, most consent forms still had a baroque quality, a combination of legal terms and medical jargon, Latinate nouns strung together in elaborate syntax; sentences resonating with otherworldly formalism. You might find passages such as: “ALTHOUGH RARE, SEVERE UNEXPECTED COMPLICATIONS CAN OCCUR WITH EACH TYPE OF ANESTHESIA, INCLUDING (WITHOUT LIMITATION) THE POSSIBILITY OF INFECTION, BLEEDING, DRUG REACTIONS, BLOOD CLOTS, LOSS OF SENSATION, LOSS OF VISION, LOSS OF LIMB FUNCTION, NERVE DAMAGE, BREATHING AND HEART PROBLEMS, PARALYSIS, STROKE, BRAIN DAMAGE, HEART ATTACK OR DEATH, and/or an unconscious state, depressed breathing, injury to blood vessels, permanent organ damage, memory dysfunction/ memory loss, brain damage, nausea, vomiting, mouth or throat pain, hoarseness, injury to mouth or teeth, aspiration, pneumonia, headache, shivering, permanent organ damage, brain damage, potential to convert to a general anesthetic if the sedation is not adequate. I understand that these risks and hazards apply to ALL forms of anesthesia/analgesia, and that additional or specific risks have been identified below as they may apply to a specific type of anesthesia.”
This kind of language has not completely disappeared from current usage.
At one point, I tried to create very specific, comprehensive forms tailored for each individual procedure. The form for cataract surgery, for example, was printed on legal size paper using 16-point bolded font. It was a kind of joke, one I made with my father in mind, but the department of Ophthalmology used if for years afterward.
The forms were largely repetitious. There are a wide variety of things that can go wrong as a result of medical care, but they all incline toward the same ultimate point, which is severe permanent injury or death. And once the patient has been warned of those possibilities, in writing, the provider has pretty much carried the burden for proving informed consent. It isn’t credible to think the risk of death or permanent paralysis was acceptable, but not some lesser ill, like six months in a body-brace.
I distilled dozens of procedure specific consent forms down to two: one for surgeries, one for other types of procedures. Both forms contained various blank spaces to list special risks or other relevant circumstances. The blanks were rarely filled in.
Because a bad result is what gives rise to a claim for damages, the list of possible bad results takes center stage, even though the alternatives and the risks of alternatives are just as important. Conceptually. When the patient has a “complication” (the medical euphemism for treatment related injury, i.e. a bad result), the issue of liability is more likely to blend theories of Negligence with those of Informed Consent. Take a case where a patient bled to death postoperatively and the procedure was done correctly, but there was a choice between two alternate surgical approaches and one had a higher risk of bleeding and the alternative had no material risks. The provider will have to show some compelling reason for recommending the higher risk procedure.
Some consent forms, striving for completeness and objectivity go so far as to list complications in descending order of probability, citing to medical journals to support the statistics, down to the double-blind study results and ambiguities that might have skewed the data. The longer and more comprehensive the forms become, the more they tend to defeat the purpose of truly informing the lay patient, who ends up lost in details and technicalities. The typical consent form sticks to the basics. Most of the forms are boring, not entirely unintentionally; too boring to serve as meaningful communication. Even the grizzly parade of horrific results, which is standard for most forms, has become mundane, because the contemporary audience has become inured to these threats by the weird voice-overs in pharmaceutical commercials, where the horrors are belied by images of a lifestyle where the treatment has achieved its promised results. Standardized consent forms might avoid listing sordid details, instead offering a short recitation that affirms a discussion has taken place, without specifying the substance of the discussion.
I once got into a debate with a malpractice defense attorney about whether to include more or less detail in a medical consent form, and what was really important and what wasn’t. I commented that the headaches of the forms were adding to the headache I already had. The lawyer offered me one of his prescription painkillers, which he assured me would be quickly take care of at least one of these headaches.
I turned down the offer.
“Apart from what you just offered being illegal? I can cope with it. I’ll get through it.”
“This stuff works well. Take my word for it. I believe that whenever medical science offers relief, you should take advantage of it.”
“I believe the opposite. I’d just as soon rely on my own body’s resources. I avoid artificial interventions, except as a last resort.”
“Maybe I feel the way I do because I was raised by a Christian Scientist.”
“Funny. I was raised by a physician.”
“You know, my mother died of a form of cancer that could have been easily treated in the early stages. She refused care until it was too late.”
“My father nearly killed himself inadvertently by taking too many antibiotics to treat swollen lymph nodes he thought might indicate cancer. The treatment he self-prescribed quickly cured whatever infection had caused his lymph nodes to swell, but in the process all but wiped out his intestinal fauna. Decades later, he was diagnosed with actual lymphoma. The cancer responded very quickly to chemotherapy, and the tumor began to shrink. He died within a week anyway, because the treatment that was curing his cancer had ravaged his immune system and he was unable to fight off a hospital acquired infection. Treatment killed him, not the disease.”
This is the essence of the healthcare decision making: choosing between these two extremes and the gradations of care that lie between them, choices shaped by individual and cultural preferences.
Informed consent poses an especially significant legal risk in procedures that are optional—- like cosmetic surgery, or gastric by-pass surgery, where the patient can simply go on living as he or she was born, and cases in which there are actually reasonable alternatives—hard choices, based on the science. Consider an acoustic neuroma— a slow growing brain tumor that will cause deafness, disability, or death if untreated, for which there are three main treatment options—all which have very pronounced advantages and disadvantages. The most up to date technology is the gamma knife, which offers a fast and uncomplicated recovery. The gamma knife is effective– most of the time. When it isn’t effective, the results can be untreatable. Then there is standard radiation therapy, which has a more difficult recovery period, but which offers more treatment options if it is not effective. And finally, there is surgery to manually cut out the tumor—which offers the greatest chance for a complete and certain cure, though the recovery period is long and the surgery itself has many potential complications. The discussion might contain elements of a sales pitch, particularly where the patient is considering a wide variety of realistic treatment alternatives. Specialties have their own biases. A surgeon might be more likely to favor a surgical solution, an internist, a medicinal one.
Because modern medical practices strive to industrialize the informed consent process, along with most other aspects of patient care, providers often look to lawyers to bless the lack of a written consent form, or to provide a magical consent form able to ward off any lawsuit. Most consent forms are signed according to protocols designed for speed and automation in increasingly bureaucratized institutions. And the forms are standardized in order to make hospital operations more efficient.
There have even been efforts to cement into the law the concept of a complete absolution consent form. Florida used to have statutory language that created an “irrebuttable presumption” that a signed consent form with appropriate contents was proof of informed consent. But the Florida courts rejected that concept, and set a precedent that holds sway in other states. The patient’s signature still creates a presumption of acceptance—but that presumption can be rebutted. But what all of this boils down to is a basic codification in the law of the obvious.
Many contemporary forms favor very basic language—targeted at the fifth-grade level. It elevates the intended legal function—giving proof that the subject matter was all laid out to the patient in plain language anyone can understand. To bring the reading level down, the lawyer has to use shorter sentences, repeating the subject of each sentence in a monotonous chant. The passage above might now read: “Bad results can happen. This includes all types of anesthesia. Here are some of the bad results. You might bleed. Or your blood might clot. A blood clot can cause a stroke. A blood clot may make you lose a limb. You might react to drugs. You might become blind. You might not be able to move all or part of your body. Your organs might be harmed. You might not be able to remember things. You may need a stronger form of drug to make you sleep.” But something is lost in the translation. Deprived of the formidable language, the provider is diminished. And perhaps the provider’s role in the informed consent process is diminished as well. The patient now has a document anyone can understand. He or she has only to read it and ask questions. One size fits all.
But the most comprehensive informed consent process would be the opposite—something tailored to the specific patient. The risks, benefits and alternatives change, depending on each individual patient’s personal circumstances. For each individual patient, there would have to be a full examination of underlying conditions, history, attitudes, culture, expectations, goals, and beliefs.
The idealized consent form would be as individually focused as the idealized consent process. It would be written in language geared to the patient’s level of sophistication. It would ponder the implications of preexisting problems, like diabetes, or psychosis. Yet the idealized ritual recognizes patient autonomy, and at that same time reinforces the notion of free will, and the comforting illusion that the choices we make lead to a result, for good or for ill, a role in which we have been granted the right to participate. The ideal process has its roots in the past, when physicians spent far more time directly interacting with patients, observing them in the home, and sharing common values.
The ideal of perfectly tailored, lengthy patient/physician discussions and planning still persist as a counter-force to the forces that would routinize and industrialize the process.
Medicare regulations require a written form signed by the patient and provider as part of the conditions for getting paid for surgeries. The documentation requirements are very formal, with an exception carved out for emergencies. The practical effect of these formal requirements is to give the Medicare program another opportunity to nickel and dime providers, essentially getting free care for some beneficiaries. If a provider gets too sloppy, he or she or it faces the capital punishment of Medicare exclusion—though this is often held out, as in the context of death penalty cases, as an incentive to bargain.
Diagnostic Procedures—those which are not treatment in themselves but are intended to simply gather more information– create an eerie tentativeness when it comes to informed consent. Here you are in the realm of the unknow, the speculative. The patient may not even be sick at all, and the procedure may carry especially dangerous, even if rare, risks, like the common colonoscopy.
Some patients are so frightened and confused, they want to simply to be told what to do. These patients welcome the paternalistic approach that was once the norm in medicine, and has since fallen into disrepute. They might take comfort in having a physician who is arrogant and absolutely self-assured, even though other patients are repelled by such an approach. Some patients expect to have sole and absolute authority over their own care, with doctors to rubber stamp their self-prescribed remedies, which might come from sources as varied as cultural superstitions, television ads, and internet research (a great deal of which is industrialized cultural superstition). Sometimes, the informed consent process turns into a power struggle, a contest to determine who will be in charge. In worst cases, the ritual devolves into a naked power struggle. A patient might hold his health hostage in order to assert control over the provider in a situation where the rest of his life is out of control. He or she might assent to some aspects of care while refusing others, making decisions that point to scientifically contradictory recovery goals, like consenting to surgery, but not antibiotics. Sometimes it is an attention seeking ploy. In these situations, the staff turns to the hospital attorney, mostly looking for some legal way to force the patient to accept the recommended, evidence-based treatment. If the patient’s choices stretch too far from what is reasonable or rational, the power of choice might be removed by taking the matter to court, and letting a judge decide. But every now and then, the patient was right and the staff was wrong, which is why it is vital to never dismiss the patient’s input without careful examination.
Under the optimal standard, one size doesn’t fit all. That is what makes it so cumbersome.
The patient, regardless of his or her attitude, comes to the provider in a state of extreme vulnerability. And the provider occupies a unique position, presenting as a friend who should be deeply trusted and a partner—for one limited purpose, medical treatment. The provider has a deep understanding of the patient’s pain and uncertainty, having encountered these devils many times before. As an ideal, the process carries an almost spiritual significance, with aspects suggesting a mystic ritual. A learned provider speaks in an unfamiliar tongue understood only by an inner circle, an esoteric language. There should be no mistaking what is at stake. Even the simplest medical procedures may have extreme consequences– life, death, serious permanent injury, and a variety of levels and degrees of injury and duration. Patients must either submit to the provider’s discretion, or the cruelties of the condition that brought them to this moment.
Sometimes, it might be advantageous to foster unrealistic goals and expectations. Sometimes they help to boost confidence when the patient is overwhelmed by fear and indecision. An unrealistically optimistic prognosis might promote a favorable outcome. Or the glow of a falsely held hope might brighten the remaining time before the patient succumbs to the inevitable. The patient who believes he will be healed is more likely to have a good result, and the converse also holds. Some patients will get the best results from unwavering submission to physician authority. For other patients, the best result is more likely to occur when they are actively involved in every aspect of decision making, when the medical treatment proceeds with continual sharing of information and control. The interchange itself may be healing. The provider must continually navigate the turbulence between the shoals of promoting an injurious gloom and promising a deceptive and comforting but ultimately unachievable certainty.
Physicians bear the primary burden for making sure the patient has given informed consent. They may delegate that duty, say to a nurse or a physicians’ assistant, but the physician can’t evade responsibility if the process isn’t done right. It is not unusual to find a doctor ordering a bedside nurse to get “consent”, meaning a signature on a form. When the nurse is the party getting the patient to sign, the nurse is proceeding on the assumption that the doctor has fully briefed the patient, though the reality might be the doctor has assumed the nurse will do the briefing. The form is presented to the patient. There might have been no discussion at all with the physician beforehand. There might be no discussion with a nurse. Or the nurse might leave the form with the patient and counsel the patient to read it carefully. It really doesn’t matter most of the time. Good or bad, most results of medical procedures are exactly what was expected.
The scientifically determined preferable treatment option is very clear, when using the standard evidence-based medicine. Most treatment decisions aren’t controversial. Broken bones must be set. Tumors have to biopsied. Infections need antibiotics. A ruptured appendix needs to come out– right now! Heart transplant cases— certainly one of the most complicated of medical consent problems– boils down to a very basic choice: prolonged painful treatment and recovery followed by a lifetime of dependence on drugs, or death.
In the majority of cases, the risks of the alternative forms of treatment far exceed those of the recommended treatment. The risks of no treatment are even worse. The patient can choose to be treated or not. Even if there are ponderous medical issues that might be considered, there usually isn’t time to contemplate and debate them. The choices between treatment alternatives are mostly illusory, because there usually aren’t many reasonable alternatives, especially when one has to take into consideration the limitations of time, payment source, standard of care, available resources and geography. These limitations and considerations—very real in the field– usually disappear in the context of a lawsuit in the aftermath of a bad result.
The physician might be at the peak of performance, perfectly finding that sweet spot while obtaining informed consent, convincing the patient to proceed with treatment, based on a full disclosure of the absolute truth– only to have the patient die or be injured as a result of a rare but dire complication. The physician might be less vulnerable for a claim for lack of informed consent in such a catastrophic case, though she or he might yet be sued anyway with the case proceeding under a variety of other negligence theories, because that’s what commonly happens in the face of unexpected tragedy. A claim for lack of informed consent will typically get thrown into the mix, even if it doesn’t go to the heart of the matter. That’s what lawyers do. They throw everything they can against a defendant in the hope that something will stick.
Because it is often irrelevant, time consuming, messy, demanding and sometimes counterproductive, it shouldn’t surprise anyone that some physicians and institutions seek to avoid the consent process, or abbreviate it, or mechanize it. Truth be told, a claim for lack of informed consent tends to be loser for the plaintiff. Most of time, it just isn’t credible to proffer a claim of hypothetical refusal based on lack of information about hypothetical bad results. The use of forms in connection with statutory protections have worked like a vaccine. Even the famous Bang case might not have been a winner. We don’t really know what happened with Helmer and Nita Bang. The appeals court ordered a new trial, with the outcome to be decided under the new rule.
Even as medical industry strives for a swifter, simpler, or eliminated, informed consent process because of the demands of time and cost, the ideal still persists, the notion of a mythic perfect meeting of the minds, the union of forces against disease and injury, the physician engaging the patient eye to eye, and delivering assurances when needed, or unflinching tragic news when needed, tailored to the patient’s sophistication, and emotional, spiritual, and physical needs—individuated to meet an endless variety of circumstances, regardless of how long it takes. That ideal of consent for every single aspect of care, every single treatment, for every single patient, that ideal still looms in the consciousness, and conscience, even as it becomes rarer. It shines like a distant beacon, somewhere in the shadows of imagination, only to leap into the forefront of priorities when the bad results actually happen. Those horrors that seemed remote and hypothetical when they took the form of mere words have an entirely different meaning when the process is viewed in retrospect.
Whether or not a choice was good or bad will remain unknown until the actual results appear. Terrible things happen in medicine all of the time, but very few of them have legal consequences. Those select few instances cast shadows over the routine of usual medical practice. The shadows cast by the rare exceptions are vast and deep. The darkness of uncertainty can be terrifying, both to the patient, who can be given no assurances of a good result, and to the physician, who has to deal with the unpredictability of the law.
Most medical decisions, like most of our other decisions, are made automatically because the answers are immediately obvious, and we don’t even have to think about them. We might be like the comatose patient in a hospital, going from crisis to crisis or resting in steady maintenance, receiving everything we need to stay alive without personal effort or involvement, in the care of unseen hands, monitored by unseen eyes and machines, while dreaming of a place other than the one the body occupies. Or we might suddenly awaken in the middle of daily routines we never stopped to think about before, with consequential choices leaping into sharp focus, forcing us to carefully consider what needs to be done next. We wake up. Sometimes we wake up to the need to pay more attention to the dangers around us, and sometimes we wake up to the need to stop worrying and killing ourselves with contemplation of hypothetical horrors. When we wake up, we might find ourselves alone. We might act on instinct, or reason, or desperation, or faith, or fear, or trust. Or we might awaken to find ourselves in the hands of a bureaucracy where is authority is shared and strong with collective wisdom– or diluted until responsibility is lost and aimlessness rules. Or we might have the guidance of a someone who advises with certainty and confidence who will tell us exactly what needs to be done, or someone who is less sure, but willing to take the time to ask questions and explore the unknown with us as part of a shared experience.
When we look deeply into the legal issue of medical informed consent, we find a mirror of all of the decisions we have to make in life, a surface that reflects the way we think about choices, a reflection that shows exactly what is at stake when we proceed without reflection.