Informed Consent form on a medical desk. Photo by Andres Victorero/Wirestock Creators/Adobe Stock.
Shelby Jennett has a neuroscience major and a philosophy minor and she is the 2023-24 Honzel Fellow with the Markkula Center for Applied Ethics at Santa Clara University. Views are her own.
In 1957, the case of Salgo vs. Leland Stanford Jr. University Board of Trustees established informed consent as a legal requirement in medical procedures, aiming to safeguard patient autonomy. This shift from paternalism toward shared decision-making between patients and physicians addressed issues stemming from undisclosed procedure risks and a lack of informed consent in the mid-20th century, leading to autonomy violations.
The concept of informed consent became crucial because it protects a patient’s right to make decisions about their health care that align with their values and preferences. Informed consent ensures that autonomy, the guiding principle in medical ethics, remains respected by empowering patients with sufficient information to make informed decisions. Traditionally, obtaining informed consent in the medical setting concerns whether enough information has been disclosed to the patient and whether they can comprehend the risks of a procedure. Yet, a significant challenge to obtaining informed consent now emerges in the context of transformative experiences. These experiences, which are not limited to medical contexts, can profoundly reshape individuals' perceptions of themselves and alter their world views, complicating traditional clinical formulations of consent. However, in the context of the clinical setting, the nature of medical procedures often has a higher potential of being transformative. This presents novel complexities for patients and physicians in ensuring informed consent.
What Are Transformative Experiences?
While many experiences involve gaining new insights about one’s preferences, transformative experiences are distinct from these “normal” experiences because they are 1) epistemically transformative and 2) personally transformative. Dr. Laurie Ann Paul, credited with discovering this philosophical concept, defines an experience as epistemically transformative when an individual not only acquires new knowledge about what something is like but also develops a new subjective perspective, allowing them to grasp the experience in a manner that goes beyond mere theoretical understanding.
Dr.Paul uses the example of tasting a durian fruit for the first time. While one can intellectually grasp the fruit's flavor through descriptions of its pungent aroma and sweet taste, true understanding only comes through firsthand experience. After tasting the fruit, one can assign a subjective value to the experience, such as finding the fruit disgusting or enjoyable. Personally transformative experiences can alter a person’s sense of what it is like to be themselves, such as changing their “core preferences about what matters,” perspectives of the world, and life goals (Paul 17). These types of experiences are broad and diverse, ranging from losing or gaining sensory abilities, being diagnosed with cancer, becoming a parent, or experiencing a tragedy.
Together, the epistemic and personally transformative aspects limit an individual’s ability to fully understand how a transformative experience will impact their perspectives, preferences, identity, or values until they undergo that experience. As Dr. Paul explains, going through a transformative experience “teaches you something new, something that you could not have known before having the experience, while also changing you as a person” (Paul 17).
Experiences are essential in decision making because we rely on them to guide our future choices. However, transformative experiences challenge traditional informed consent practices because they reshape the individual's perspectives in ways that can make consenting to them impossible.
Transformative Experiences Pose a Unique Challenge to Informed Consent
Obtaining informed consent requires a patient to demonstrate competence and the ability to understand and appreciate. Understanding means that a person can grasp the risks and benefits of a procedure. For example, someone considering ear piercings must understand potential risks like swelling, infection, or keloid formation. To appreciate means recognizing the implications of these risks in one's specific situation, such as acknowledging that existing scar tissue might increase the likelihood of developing keloids.
Determining competence often involves assessing a person’s capacity to comprehend and use this information effectively. This involves rational manipulation, which is the ability to analyze the risks and benefits of choices. Determining competence is one of the most challenging aspects of obtaining informed consent in the medical setting. Thus, the problem is traditionally framed around a person’s ability to process information presented to them. In most cases, physicians fail to obtain informed consent because the patient lacks decision-making capacity, for example, if they are unconscious, if they are young children, or if there are language barriers, which prevents them from comprehending the information presented.
However, transformative experiences present a unique challenge to informed consent because the required task goes beyond mere information processing (e.g. understanding risks). Instead, it is a matter of understanding and appreciating something impossible: what it would be like to be a different person. Traditional consent models are predicated on the ability of a medically competent patient to understand (have knowledge about what changes a procedure entails) and appreciate (know how these changes specifically apply to them) the implications of a treatment to ethically accept or refuse treatments.
However, transformative experiences, such as becoming a parent or experiencing a significant sensory change, cannot be fully understood or appreciated through prior learning or simulation; reading about how to be a parent will not allow you to truly know what it will be like for you to become a parent and wearing a blindfold does not capture the complexities of what it would be like for you to become blind. This gap creates a problem: many scenarios assumed to be covered by standard informed consent practices fall short because they do not account for the inability to foresee the personal ramifications of such changes (more specifically, they cannot access the information of what it would be like to be a different person).
This limitation calls into question the effectiveness of current consent models in situations involving transformative experiences and the need to re-evaluate how consent is obtained and understood in these contexts. To understand where traditional models of informed consent still hold, let us consider the case of Patient A. Patient A visits a dermatologist for a consultation regarding a bothersome wart on their finger. The dermatologist determines that the wart looks precancerous and explains that it can be easily removed through a cryotherapy procedure, which involves freezing the wart with liquid nitrogen. The dermatologist informs the patient about the process, potential minor side effects like temporary pain or blistering, the expected recovery time, and the recurrence rate for warts being 19.5%. Patient A understands the potential risk of wart recurrence and can appreciate the benefits of removing a precancerous wart because they recognize that removing it will reduce the risk of developing a more severe condition.
Although this is a new experience, it is not a transformative experience because while Patient A had an epistemic transformation through gaining new knowledge about what it is like to go through cryotherapy, they did not have a personal transformation. Patient A can truly give informed consent because they can comprehend all the information being presented, understand the risks and benefits, and appreciate the risks in their particular situation.
In contrast, traditional models of informed consent cannot be used when people have a transformative experience because it is impossible for them to appreciate what it would be like to be a changed person. The following cases will further illustrate this problem.
Transformative Experiences in the Clinical Setting
Patient B: Abortion
Patient B is an 18-year-old female undergoing a medical abortion with mifepristone and misoprostol. The patient is around six weeks pregnant at the time of termination. Patient B expresses certainty in her decision after considering the two options of abortion or carrying the pregnancy to full term, feeling that an abortion aligned with her preference to continue her education rather than raise a child. During the initial consultation, the clinician explains that medical abortion with mifepristone and misoprostol often causes heavy bleeding and intense cramping, among other physical side effects.
After taking the prescribed medications, Patient B experiences the expected cramping and heavy bleeding. However, in the days following the abortion, she reports feelings of grief about the pregnancy, which manifests into persistent anxiety. These emotions were significantly more intense than anticipated, leading to a substantial shift in her core values and life goals. Patient B, who had previously been pursuing a business degree, reconsidered her career path entirely, developing a strong desire to pursue a career in medicine, specifically in women’s health. This decision was motivated by a newfound passion for advocating for comprehensive reproductive care and supporting others who face similar decisions.
Evaluation: Patient B’s experience was transformative because not only was she unable to grasp the psychological outcomes of her procedure until after the experience, but the experience left Patient B with a shift in life goals and core values. Thus, although Patient B could broadly understand the risks and benefits of her procedure, she could not appreciate the risks and benefits that would be applied to her specific case because she did not have access to the information about what it would be like to be a changed person. Therefore, Patient B could not give informed consent, as typically understood, even if she felt certain about her decision.
Patient C: Flame Burn
Patient C is a 57-year old who suffered a life-threatening flame burn to 65% of their total body surface area with inhalation injury caused by a house fire that was started by a faulty appliance. Some of the burns were deep enough to require surgical intervention, while others required in-patient dressing management (where this includes frequent dressing changes that must take place under sedation due to pain levels).
Flame burns, in general, require prudent management; typical measurement of mortality risk for burns is done via the “modified Baux score,” which combines patient age, total body surface area of burn and presence of inhalation injury, and this score gives Patient C’s mortality risk at 84%. Patient C initially undergoes emergency treatment judged by physicians to be in their best interests, as at that point, they lacked decision-making capacity because they were found unconscious. Later, they gave consent for some early procedures. Some way into treatment, Patient C starts to put off or refuse treatments, saying they are not ready to go through them. This escalates from refusing further surgical intervention and basic management, such as dressing changes and rolling to prevent pressure sores, despite Patient C being informed that doing so is likely to lead to death. Patient C is seen by a comprehensive team including a consultant psychologist, psychiatrists and an ethicist, is never evaluated as suicidal, and does not express a wish to die. At a late stage, Patient C expresses regret about refusing treatment, but ultimately, Patient C dies as a result of infections from lack of treatment to their wounds.
*This case was taken and modified from Egerton & Capitelli-McMahon 2023
Evaluation: Patient C’s case is likely to be a transformative experience because of the significant changes in both their body and mental state following life threatening burns. This incident required extensive medical interventions that were highly likely to reshape Patient C's daily life, functional capabilities, and experience of themself. Patient C's decision to initially refuse essential treatments, despite knowing the fatal risks, reflects the difficulty of making a decision about treatments and a re-evaluation of personal values or priorities.
Epistemically, Patient C gained a new firsthand experience with pain and medical dependency but also may have had a personal transformation through changed priorities, values, and sense of self. The moral issue, in this case, is not that Patient C came to regret their decision–something that may occur with any decision–but that Patient C was being asked to make medical decisions that assumed they could understand what their post-treatment life would be like (something Patient C could not do).
Patient D: Cosmetic Surgery
Patient D is a 24-year-old who presented with a desire to undergo cosmetic surgery on the upper eyelids. Patient D has monolids and has expressed a preference for achieving a double eyelid appearance, modeling their desired aesthetic after specific celebrities. They have thoroughly researched the procedure and gathered extensive information about the recovery process and potential complications.
Patient D provided images of the desired appearance during the consultation. The surgeon assessed Patient D's mental health history and found no evidence of any psychiatric conditions. Patient D seemed capable of understanding the information presented, with a thorough comprehension of the surgical risks and the realistic expectations discussed, such as healing time, skin elasticity, and scarring. The clinician deemed them competent to consent to the procedure. Patient D underwent the surgery without complications. Throughout the healing process, the results aligned closely with the expectations discussed during the preoperative consultations. Patient D was pleased with the outcome, feeling that their new appearance closely matched their desired aesthetic.
Evaluation: Although it seems like Patient D had an epistemic transformation by gaining new knowledge of what it is like to have cosmetic eyelid surgery, they did not have a personal transformation. While the surgery allowed Patient D to alter their appearance in line with their aesthetic desire, the overall impact did not change their core values. The surgical results matched Patient D's preoperative expectations and desires without complications, and while this brought satisfaction, it did not change their fundamental sense of self or life perspective. However, a cosmetic procedure, such as this case, could easily become transformative if the patient’s world views or sense of self change after the procedure; perhaps their physical appearance more accurately expresses the way they view themselves, or perhaps the change leads to poorer self confidence and changes the way they engage with others in ways they could have never imagined.
Consent Increases Patient Outcomes
Informed consent is crucial for preserving a patient’s autonomy (ensuring that the decision is truly their own) and also improves patient health outcomes after a procedure. Regardless of the treatment’s outcome, several studies indicate that patient satisfaction with their decision increased, and anxiety levels decreased when they were properly informed, specifically in patients undergoing rhinoplasty, elective gynecological procedures, and spinal surgery. Although a challenge in informing patients is deciding how much information is sufficient to disclose, as patient preferences vary, patients reported that one of the most important aspects of the informed consent process was not necessarily being told specific information but that they felt they had enough information to make an informed decision.
Moreover, there seems to be a pattern where patients with high baseline anxiety levels, or trait anxiety, report needing more information to reduce their anxiety. Patients with high trait anxiety undergoing spinal surgery had the highest levels of anxiety before having a consultation with their surgeon and reported reduced anxiety levels after an informed consent consultation. Anxiety levels directly affect patient health outcomes, as patients with high anxiety levels before going through major general surgery were 2.12 times more likely to develop an infection after their procedure. Thus, informed consent is not merely a procedural formality but a crucial aspect of medical care that impacts patient outcomes in addition to preserving their autonomy.
Practical Challenges for Clinicians
Not only can it be difficult for patients to consent to procedures that have the potential to be transformative, but clinicians face challenges when trying to provide their patients with enough guidance to ethically give informed consent. If the same procedure or medical decision depends so heavily on the particulars of a person (e.g. lived experiences, core beliefs, and values), how can a physician know whether that experience will be transformative from patient to patient? Whether an experience is transformative from one patient to another is somewhat subjective, influenced by individual preferences, values, and life circumstances.
While clinicians can give statistics about the percentage of complications occurring for a procedure, no amount of information will allow patients to fully appreciate how a procedure might impact them. This may make it seem as if the problems posed by transformative experiences are merely that clinicians need to provide more information to patients so that they may then understand and appreciate risks appropriately. However, the problem with transformative experiences is that the information that patients would need to properly appreciate the risks involved is impossible for them to access and, consequently, impossible for physicians to provide.
Potential Consequences for the Patient
Despite practical challenges, failing to recognize transformative experiences in the medical setting can not only create the illusion that informed consent has occurred, but it can increase the risk of psychological harm to a patient. Since such experiences can alter an individual's identity, values, and understanding of themselves, treating the experience as routine may lead to increased feelings of anxiety, isolation, and a sense of being misunderstood by health care providers. Moreover, the lack of a personalized approach in addressing transformative experiences can undermine whether a patient can truly consent to a procedure, as patients may not be prepared for the depth of change they may experience. Treating transformative experiences with the attentiveness they require is essential for patient-centered care, ensuring that each person’s experience is recognized as unique.
Possible solutions
One practical solution, suggested by Dr. Paul, is to approach decision making involving transformative experiences based on character traits–something that is likely to be more stable about a person–rather than on the particulars of a person or their past experiences. Given the changes transformative experiences can cause to one's preferences, Dr. Paul advises focusing on one's core values and personal characteristics rather than trying to predict specific outcomes. For example, asking questions like “What kind of person do I want to become?” and “What values are most important to me?”
By using this approach, individuals can make decisions that align with aspects of their identity that remain relatively stable, even if the specifics of how the transformative experience will affect them are unknown. Although this approach is not perfect, as core values that are thought to be stable can also change, the framework empowers individuals to prioritize their fundamental traits and goals over imagining hypothetical outcomes of their future selves.
While it is difficult to know who will have a transformative experience and which medical procedures will be transformative, certain interventions, particularly those altering the body and resulting in irreversible change, have a higher potential to be transformative. Procedures such as gynecological surgery, cosmetic surgeries, gender-affirming care, organ transplant, limb amputation, and aggressive treatments like chemotherapy are some examples of procedures more likely to be transformative.
To come closer to obtaining informed consent, health care providers could administer a brief questionnaire to patients that is specific to the type of procedure and focuses on core values, personal qualities, and their openness to change. This would not need to be extensive, as health care resources are scarce, but comprehensive enough to identify individuals who might be more susceptible to transformative experiences, enabling providers to offer more tailored counseling. In conversations with patients, providers can consult bioethicists who specialize in narrative ethics, social workers, or behavioral therapists who could offer concurrent counseling services.
Already, with higher risk procedures, extra measures are taken to ensure that informed consent is truly obtained. For example, the informed consent process for vascular surgeries includes having another surrogate decision maker present, thorough discussion about the potential for prolonged life support, and asking the patient about their end-of-life wishes. Furthermore, in California, the informed consent process for medical aid in dying (MAID), the most transformative experience of all, requires Californian patients to request this procedure from their physician on two separate occasions, at least 48 hours apart, a third time in written form, and mental health evaluation to ensure that the decision is truly one’s own.
To better understand specific questions that could be asked, consider a patient needing either a multiple digit amputation or other treatment options to restore digit function after an accident. A questionnaire to help patients prepare for this decision could include:
- What are the most important activities or tasks you perform on a regular basis?
- Are you concerned that these would be affected by the procedure?
- On a scale of 1 to 10, how prepared do you feel to adapt to new ways of performing tasks that previously relied on these digits?
- Have you considered how this amputation might affect your long-term career or personal aspirations?
- Are you the kind of person who quickly adapts to change and new challenges?
This practical approach, while not solving the problem entirely, can help patients make decisions when an experience is likely to be transformative by prompting self-reflection on their values in a way they may not have done before. We often underestimate the likelihood of changes impacting us in unexpected ways, which can give a false sense of obtaining informed consent. It is crucial to recognize the limitations of traditional consent models and adopt more nuanced approaches to ensure patients’ decisions are as informed as possible. Each patient has a unique narrative; we have to consider patients’ backgrounds, values, and perspectives when getting informed consent. Ultimately, we must prioritize and genuinely care about obtaining informed consent, as it is fundamental to respecting patient autonomy, preserving their rights, and providing ethical patient-centered care.