Rethinking individual autonomy in medical decision-making for young adults reliant on caregiver support: A case report and analysis

Introduction

The principle of respect for individual autonomy is a key consideration in Western clinical bioethics, but whether an individual is in a position to exercise autonomy is not always clear. This is particularly true in the area of adolescent medicine, as adolescents represent a heterogeneous group of individuals with varied levels of decision-making capacity due to differing ages, stages of brain development, clinical circumstances, and maturity. ¹ This paper centers on the case of a young woman, legally an adult but still an adolescent according to some definitions, ² displaying diminished maturity in the context of a serious and complex medical decision. This fictionalized case is based on a real patient case with substantively similar features, which has been altered to protect the individual's privacy. This case, we argue, raises important bioethical questions, including: 1) Can patient autonomy be appropriately respected in the case of a young adult with normal cognitive function who lacks relevant life experience for age-appropriate social development? 2) How should this concern for autonomy be upheld in the context of a medical decision that has significant repercussions for familial caregivers as well as the patient when the patient exhibits diminished capacity? And finally, 3) Can health care professionals promote the best interests of the patient in such a case without disregarding autonomy concerns altogether?

We begin by introducing “Julia,” a young woman in her mid-twenties with a congenital neurological disorder, who faced a challenging decision regarding pregnancy termination. We discuss the role of the care team in assessing Julia's decision-making capacity and challenging her thinking about the future, despite the fact that she was legally authorized to make autonomous health care decisions. We assert that assessing such a young adult's capacity is appropriate if the providers involved challenge themselves to understand the context surrounding a particular decision. A risk-related standard can be useful in distinguishing between decisions that a patient has the capacity to make versus those that she does not. Turning to a feminist perspective, we argue that in such a case, the concept of autonomy may be expanded beyond the individual to include the family, and that a relational model of autonomy can be helpful to both the patient and the care team in better understanding the context and stakes of a medical decision. We conclude by addressing some of the ethical limitations to this approach and identifying strategies for approaching similar challenging cases in the future.

Case

Julia was a patient with a congenital neuropathy disorder followed by pediatric neurology at a large public healthcare system in a midsize United States city. Her condition affected her peripheral nervous system, causing muscle weakness and atrophy, and eventually major loss of motor function. Despite this, she maintained normal cognitive function, as her central nervous system was unaffected. Julia was completely reliant on her parents for bathing, eating, transportation, and other activities of daily living. When she was 26 years old, Julia and her family were referred by her pediatric neurologist to see an adolescent counseling and obstetrics and gynecology team to discuss a new and complicated issue—Julia was pregnant and had hidden it from her family for several months. Julia was excited about the pregnancy and wanted to continue it. However, her parents presented her with an ultimatum: if she did not terminate the pregnancy, she would have to move to a state-run assisted living facility for adults with disabilities for the duration of the pregnancy and no longer be cared for in their home afterwards.

One of the roles of the hospital's adolescent counseling team was to provide nondirective pregnancy options counseling. The counselors who interacted with Julia had experience helping adolescents navigate the world of adulthood when it came to reproductive decision-making and treated this case similarly. Over the course of several visits with the family, Julia's providers listened to the perspectives and concerns of Julia and her parents to understand how to help resolve this impasse. Julia's parents were serious about the ultimatum they had proposed. Although Julia was capable of conceiving and delivering a baby, her physical limitations prevented her from being able to raise a child independently. The father of the child had a history of violence and possible substance abuse and was also not available to contribute to childcare. The family had completely dedicated their finances, time, and energy to Julia's needs, and felt that it would be impossible to find the resources to care for a newborn and raise a child as well. Further, her mother felt frustrated that Julia did not seem to understand the seriousness of the situation, and the dire challenges it posed for the well-being of Julia and her parents alike.

On speaking with Julia, the team found that she was extremely attached to the idea of having a baby, wanting to share in this experience with friends who were starting families. Although it was discussed, Julia was unwilling to consider adoption, which would have involved notifying the father of the child and relinquishing her ideal of motherhood. Her counseling team found that she frequently exhibited “magical” or unrealistic thinking regarding the outcome of her pregnancy—believing that the baby's father would contribute, her parents would take care of everyone, and everything would work out for the best. Although Julia was 26 years old and legally allowed to make decisions for herself, it became clear to her care team that she was closer to 14 in terms of maturity. Although she was not cognitively delayed, Julia's disability had likely excluded her from life experiences promoting independence and maturation. Her counselors challenged her to think more critically about her situation, posing questions that led her to confront the reality of her future, such as: Where will you live? How will you support yourself? How do you feel about the risk of intimate partner violence if the baby's father becomes involved? Over many such conversations, Julia came to take the reality of losing her parents’ support seriously, and she realized that she did not have a concrete plan in response to these queries. After further reflection, she ultimately decided to terminate the pregnancy.

Discussion

To understand how this challenging case was approached by the providers involved, we must discuss their assessment of Julia's decision-making capacity and their response to this assessment. Evaluating decision-making capacity is especially important in the field of adolescent ethics, as adolescence is a key period of social and neurocognitive development. Until individuals turn eighteen, they cannot formally consent to medical procedures or to participate in research studies; instead, ethical standards typically require obtaining pediatric assent and parental consent for such interventions. ³ Although we may start with the assumption that anyone over the age of 18 has capacity to make most medical decisions, this is not always the case. Capacity guidelines based on strict age cutoffs are not appropriate for all cases of decision-making, with notable established legal exceptions including adolescents who are “emancipated” or very mature for their age, and adults who are cognitively disabled. ³ It is also important to note that capacity is always decision and context-specific—at a particular time an individual may have capacity to make one medical decision but not another. ⁴ Additionally, an individual should not be deemed to lack decision-making capacity solely because they are making a decision that is not considered “good” by their care team. ⁵ Instead, providers must ascertain whether or not a patient is demonstrating appropriate reasoning while making the decision. ⁵ Although this standard protects patients against paternalistic behavior on the part of providers, significant bias can still exist in assessments of “reasonable” decisions in a healthcare setting, particularly in cases of reproductive decision-making.^6,7 Finally, it is necessary to acknowledge that regardless of capacity, adolescents under age eighteen are also granted broad legal authority to make medical decisions concerning their reproductive health, substance use, and mental health.^3,8 Adolescent authority in these areas also assures rights to healthcare provider confidentiality, is protected by law, and is meant to promote public health by encouraging the disclosure of sensitive health information without fear of parental retribution. ³

There are several clinical tools that can be used to judge whether an individual possesses decision-making capacity in a specific circumstance, which can be useful in assessing adolescent or young adult capacity. Grisso and Appelbaum define a simplified version of Beauchamp and Childress's original seven standards of incompetence, the MacArthur Competence Assessment Tool-Treatment (MacCAT-T), which assesses four standards of decision-making capacity: 1) expressing a choice; 2) understanding; 3) reasoning; and 4) appreciation.^9,10 The MacCAT-T is a standardized tool that has been validated in both adults and children, with answers to scenario questions generating a score and certain score cutoffs establishing capacity in the four necessary areas. As demonstrated by her initial inability to grasp the significance of the consequences of her decision to continue the pregnancy for herself and her parents, Julia did not meet the standard of appreciation necessary for adult capacity.

Further insight regarding adolescent and young adult decision-making can be gleaned from cognitive neuroscience. It is known that the adolescent brain differs in significant ways from the adult's that make adolescents more prone to poor decision-making and impulsive behaviors. Key structures related to these functions include the prefrontal cortex (PFC), which is necessary for executive control (including impulse control), and the ventral striatum, which is involved in the neurological reward circuit. ¹¹ Both of these neuroanatomical areas develop throughout adolescence and early adulthood, meaning that adolescents and young adults can be intellectually mature without being emotionally or socially mature, as was determined in Julia's case. ¹¹ Additionally, reward circuitry tends to develop faster than the PFC, meaning that adolescents are more likely to make riskier decisions in favor of short-term rewards than long-term rewards. ¹² Adolescents are also more sensitive to the actions of their peers and demonstrate decision-making that is motivated by a desire to be accepted into social groups. Studies have examined the link between neuropsychological assessments and decision-making capacity with varied results. ⁸ Although a judgment of medical decision-making capacity cannot be informed by neuroscience alone, this understanding of the unique neuropsychological status of adolescents allows us to ground observed behavior patterns regarding decision-making in known biological processes.

To apply these ethical, legal, and neurocognitive concepts, let us return to the case of Julia to approach our opening questions. First, how should clinicians uphold the principle of respect for patient autonomy in such a case? The decision about whether to terminate the pregnancy was ultimately Julia's. As an adult, she had full legal authority for medical decision-making. Even if she had not been over eighteen, her reproductive autonomy would have been legally protected from her parents’ interference in most states. Her care team, however, gauged that initially Julia did not demonstrate decision-making capacity due to her inability to appreciate her situation and the significance of the consequences of her decisions. ⁹ This was apparent in Julia's magical thinking regarding the outcome of her pregnancy and her relationship with her parents, as well as in her unwillingness to consider adoption, an ultimately altruistic act. Through discussions with her providers, Julia also demonstrated an adolescent-like preoccupation with fitting in with her friends who were starting families. Although Julia was a young adult, she seemingly demonstrated a neuropsychological mismatch between short-term reward and impulse control in the face of long-term consequences that is characteristic of adolescents, consistent with her counselors’ assessment of Julia exhibiting the level of maturity of a 14-year-old rather than a 26-year-old. This cannot be explained by a frank neurological delay, but more plausibly by lacking the life experiences needed to judge her situation realistically. It is worth noting that this capacity assessment is specific to the context of decision-making regarding her pregnancy; Julia likely retained adequate decision-making capacity regarding care for her chronic medical condition and related health care decisions.

The approach to Julia's autonomy in this case was akin to a variable or risk-related standard of adolescent decision-making, exemplified by Bolt and van Summeren in the context of pediatric decision-making regarding bariatric surgery. ¹³ They argue that requiring pediatric patients to demonstrate all requirements for decision-making capacity in order to undergo bariatric surgery is too stringent a standard, resulting in exclusion of adolescent patients from a procedure that could be beneficial to their health. ¹³ To prevent this, the authors argue that a risk-dependent standard of capacity should be employed, meaning that if a procedure involves minimal risk and has significant potential for patient benefit, then a lower threshold for decision-making capacity should be allowed. As the authors explain, “Application of a variable standard implies that someone can be qualified as competent to consent, but incompetent to refuse a particular treatment (‘asymmetrical competence’).” ¹³ Julia's providers similarly determined that although she was an adult with legal decision-making authority and extensive experience in the healthcare system, the significant risk to Julia's health and well-being associated with continuing the pregnancy justified instituting a more stringent threshold for capacity than might have otherwise been used. Although Julia may have demonstrated diminished maturity in other circumstances, this had not justified limiting her autonomy regarding lower-risk decisions related to her medical care, consistent with Bolt and van Summeren's “sliding scale” standard.

In discussing Julia's autonomy in this case, it is also important to note that her decision to maintain or terminate a pregnancy had significant repercussions for the rest of her family. As it is classically interpreted, the principle of respect for autonomous decision-making is applied to individual autonomy; however, Julia's decision had the potential to harm or substantially obligate others close to her. In addition, Julia exhibited diminished capacity, as noted above, due to her immaturity, secondary to a very limited and sheltered life experience. Is there a way to appropriately respect autonomy here, avoiding the two extremes of paternalistic “best interest” considerations, on the one hand, and the pretense of a fully capacitated adult decision maker, on the other?

A rethinking of the dominant notion of autonomy as inherently individualistic has been supported by various thinkers, including communitarian, casuist, and feminist critics. Ann Donchin adopts a feminist perspective in her argument for including a greater understanding of complex social relations in a bioethical approach to decision-making. ¹⁴ For instance, Donchin highlights the limitations of the classical view of autonomy for patients who are chronically ill:

For under conditions of disabling illness it becomes strikingly apparent that individuation is a fragile achievement, always at risk of coming unraveled. […] Enchantment with the illusion that individuation can be fully accomplished encourages repression of one's own dependencies, disavowal of interdependencies, and disparagement of those whose physical and emotional labors are needed to sustain the illusion of independence. ¹⁴

This feminist perspective provides dual insights to the case of Julia—both in expanding the question of autonomy beyond the individual to her caregivers as well, and in understanding how this perspective was used by her care team to challenge Julia's magical thinking and call forward her capacity. In a world devoid of context and defined only legally, Julia would have full individual autonomy over the decisions involving her pregnancy; however, Julia's life was inexorably intertwined with those of her parents. Any medical decision made by an individual may impact others, but the significant burden of time, financial, and emotional resources that raising Julia's baby would have placed on her family is a salient fact of the context of this case that cannot be ignored. Although their role in influencing Julia's decision could be considered coercive, her parents shared equally, if not more, in the responsibility of managing the consequences of Julia's decision.

This brings us to our third question—can health care professionals promote the best interests of the patient in such a case without disregarding autonomy concerns altogether? Although her care team's role in challenging Julia to evolve her thinking about the future could be viewed as inappropriately paternalistic for a developmentally typical 26-year-old, the fact that Julia was more like a 14-year-old with respect to life experience and emotional maturity warranted a more sensitive approach to her decision-making. In fact, we may take the next logical step and query whether it would have been unethical for these providers to treat Julia as a fully capacitated 26-year-old. Applying the framework of a risk-related standard to this case demonstrates that the team's questioning of Julia's decision-making capacity was warranted by the risk of Julia losing her family's financial and life-sustaining support. Further, understanding the complex interplay between Julia's actions and consequences for her whole family prompts us to question a narrow notion of individual autonomy and give greater weight to a feminist model of relational autonomy to capture its relevance to the case. This perspective further allowed Julia's providers to challenge her, despite her legal authority, when it was clear that her magical thinking did not allow her to comprehend the significance of the effects of her decision on her future and her family. Although acting on behalf of Julia's best interests and not her parents’, her providers deemed that understanding her parents’ perspective and the serious challenges of her situation was necessary for Julia to be able to make an informed choice. Rather than taking a directive, paternalistic approach to counseling, Julia's care team was simply direct. They demonstrated respect for Julia's autonomy and her health by directly engaging her, i.e., by encouraging her to consider her future more realistically and therefore calling forward her capacity to make this difficult decision.

Conclusion

Julia's case illustrates the challenges of assessing decision-making capacity in a young adult whose experiential maturity is limited by chronic disease or disability. We aimed to contribute to the literature regarding ethical approaches to decision-making capacity through the analysis of the fictionalized case of Julia, a 26-year-old with a severe peripheral neuropathic disorder who faced a decision about pregnancy termination. We must acknowledge that this is a complex case related to a sensitive and often-debated medical decision. Pregnancy termination can be a challenging decision for any person, and our examination of this case illustrates the role of an individual's experiential maturity and social context in such a decision. We suggested that the analytic frameworks of adolescent ethics, unique in accounting for the fluid nature of cognitive and social development, can be applied to judgements of medical decision-making capacity of an individual of legal adult age. We argued that when a risk-dependent standard was applied, Julia's demonstrated lack of appreciation of the consequences of her decision regarding pregnancy options initially limited her capacity to make such a decision. The interwoven nature of her life with the lives of her parents and their role as caretakers made it necessary to adopt a relational model of autonomy when considering the consequences of Julia's decision. Further, we suggested that clinicians, including counselors or clinical bioethicists, may call forward an individual's capacity by being direct, not directive, in challenging that individual to consider seriously the reality and risks of a medical decision.

It is important to note that by making this argument, we do not mean to diminish the rights of women, pregnant people, or disabled individuals in general, groups that have been historically stripped of autonomy in healthcare settings. Rather, by using a nuanced approach to understand the details of this case and of her care team's role in Julia's decision-making process, we hope to communicate the importance of analyzing the context of any capacity assessment rather than generalizing patients’ experiences or capabilities. In the future, it will be vital to continue to critically assess the ways in which individuals with disabilities interact with the healthcare system, including the role of clinical bioethicists in mediating conflicts that may arise. Additionally, although not discussed here at length, the field of reproductive bioethics may have implications for further analysis of this case regarding the continuously controversial issue of pregnancy termination. Finally, this case serves as a reminder of some concrete recommendations for medical professionals involved in clinical bioethics: that adequate time must be allowed to get to know the patient and family, that knowledge is gathered in appropriate detail, and that this information is applied thoughtfully in discussions of patient perspectives and assessments of capacity. In the absence of a longstanding relationship, it may take a thorough questionnaire or a long interview for the care team to assess the decision-making capacity of the patient. Regardless, any professionals involved in such a conflict must challenge themselves to think beyond an individualistic interpretation of autonomy and consider the relational dynamics of the decision-making process.