Individual Autonomy: The Right of Choice - Catherine Luchars '15

With the development of medicinal care in the past century, the balance between prolonging life and relieving suffering has become increasingly more controversial for doctors. Instead of death happening naturally or accidentally on people’s own terms, it has moved to public hospitals. Physicians now control the outcomes of people’s lives, raising the question of whether the doctor’s authority serves a patient’s best interest.  The responsibility of making decisions on how to treat a patient must naturally shift from doctors and governmental authorities to patients and family members. Assuming an individual is competent and of a rational mind, being free from unwanted interference in order to uphold bodily integrity is a fundamental principle ingrained in our democratic society. The right of individuals to choose their own medical care and the time, place, and manner of their death is implicit in the basic notion of personal autonomy and self-determination and ultimately must take precedence over the governmental interest of protecting citizens by safeguarding their health.

This contemporary issue over who should be making medical decisions is being disputed in a current court case in Connecticut. It involves Cassandra C., a 17-year-old girl, who was diagnosed with Hodgkin’s Lymphoma in September. In the face of grueling future medical treatments to combat this disease, Cassandra made the personal decision to forego chemotherapy altogether, despite its 80% chance survival rate, and cope with the fact that without treatment her chance of death is almost certain. This decision, supported by her mother, has entangled the two in a legal battle against the Connecticut State courts. It began after the surgical removal of Cassandra’s lymph node performed by local doctors. Following this, Cassandra and her mother planned on consulting with doctors in another state to seek another opinion, but the local doctors called the Department of Children and Families, raising the issue of parental medical neglect. As a result, the Court ordered the removal of Cassandra from her mother’s custody until her mother “provided and cooperated with the medical care under DCF supervision and as recommended by her doctors”.  Cassandra and her mother subsequently complied with the court’s orders, but after Cassandra received her first two chemotherapy treatments, she ran away from home to avoid further treatment.  When she returned, the court “ordered that she be immediately removed from her home and that she remain in DCF’s care and custody”. They also authorized the DCF to “make all necessary medical decisions on Cassandra’s behalf.” She is now in a hospital receiving treatment under this court order.
The court declared that not only Cassandra, a 17-year-old girl, is incompetent to make her own medical decisions, but her mother lacks the responsibility as well, bringing up issues regarding personal and family integrity. Cassandra’s mother has acknowledged the fact that her daughter will die without treatment.  Her mother declared that regardless of this outcome, “it’s her constitutional right—she doesn’t want poison and toxins in her body. It’s her choice, and I support her decision.” Cassandra “put up a fight” against the Connecticut state doctors to avoid chemotherapy, and ultimately had to be strapped down to the hospital bed. She reflects on her experience in a personal essay after being hospitalized in December, “ I was strapped to a bed by my wrists and ankles and sedated. I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated.” Cassandra, currently confined to the hospital with limited communications and visits, specifically by her mother, writes that she feels suffocated by the court’s intervention and that nobody has let her breath. She ends her personal essay with the fundamental constitutional issue, “How long is a person actually supposed to live and who decides that?”

The basic right for a person to choose not be touched or treated without consent, despite a potentially fatal outcome, has been consistently established in prior court decisions and should provide ample protection for Cassandra. Based on Cruzan v. Director, Missouri Dept. of Health, a case involving a woman who was permanently unconscious after a serious car accident, the Supreme Court recognized the right of any person deemed competent to refuse any medical treatment. The court limited this right by saying that states also have an interest in this matter, whether preserving life, preventing suicide, or upholding the ethical integrity of the medical profession.  Therefore, the court decided that a state has the ability to insist on clear and convincing evidence as to the patient’s wishes. This case, along with several others such as Quinlan vs. New Jersey and Bouvia v. Superior, ushered the legal acceptance of what is now classified as passively hastening death. In Quinlan vs. New Jersey (1976), Karen Ann Quinlan stopped breathing and fell into a persistent vegetative state, with full recovery unlikely. Her family fought the courts to remove the respirator, figuring that’s what Karen would have wanted. The New Jersey Supreme Court acknowledged both the right for Quinlan to refuse further treatment and her family’s right to make that decision for her by allowing her respirator to be removed. In Bouvia vs. Superior Court, the court recognized that a 30-year-old woman, who was a victim of cerebral palsy, had the right not be force-fed through medical procedures, even if refusal led to her death. In these cases, the patients, whose prospects for a somewhat meaningful existence were almost certain, were still allowed to end their life by foregoing treatment. Courts hold that an individual’s right to privacy and to be free from unwanted bodily interferences affords an individual the ability to make this decision. 

The courts distinguish the countervailing state interests of the preservation of life, the prevention of suicide, the protection of third parties, and upholding the ethical integrity of the medical profession from the ability to limit a patient to forgo medical treatment.  However, if a patient is terminally ill, permanently unconscious, or deemed competent by the courts to make rational medical decisions for themselves, these limitations have little effect. Ultimately, the court's view, as stated in Quinlan is that “the state’xs interests weaken and the individual’s right to privacy grows as the degree of bodily invasion increases and the prognosis dims”. They deem that allowing a patient to merely refuse medicine, even when it is life-sustaining, is letting the disease or nature take its course, therefore not constituting suicide, which is generally condemned in most state and federal courts. In addition, they said that the government’s concern over the effect of the medical decision on a third party, such as a child, friend, or other close family member, denies the patient of the choice of which risks to take. A person is obligated to evaluate their circumstances and judge what is best whether for themselves or those who might be affected. Ultimately, the right of individuals to make their own medical choice prevails over the interest of a third party. 

They also recognize that this strong right does not sacrifice the ethical integrity of the medical profession because finding a cure to any and all disease is not the end goal anymore. Rather than treatment, the dying person is often in need of comfort.  This theme of compassion in doctors is highlighted in the decision of Superintendent of Belchertown State School v. Saikewicz, stating, “if the doctrines of informed consent and right of privacy have as their foundations the right to bodily integrity…and control of one’s own fate, then those rights are superior to the institutional considerations.”   These exceptions to the limitations on the right to refuse treatment directly apply to Cassandra’s situation. They uphold the basic human principles that not only is an individual obligated to make decisions for themselves, but also the doctors are obligated to respect those decisions, as the sole goal of treatment is not recovery for those suffering from severe, incapacitating illnesses. With modern technology affording a patient multiple medicinal routes to take, the patient must make the decision based on what they feel most comfortable with, eliciting the crucial right of privacy and self-determination. 

Despite not being explicitly guaranteed as a fundamental right in the constitution, the right to privacy has become accepted in landmark Supreme Court cases in the past.  Dating back to 1891 in Union Pacific R. Co. v. Botsford, the court recognized that the right of personal privacy or a “guarantee of certain areas or zones of privacy” exists in the constitution.  Justice Blackmun in Roe v. Wade ruled that “in varying contexts, the Court or individual Justices have found at least the roots of that right in the First Amendment; in the Fourth and Fifth amendments; in the penumbras of the Bill of Rights; in the Ninth Amendment or in the concept of liberty guaranteed by the first section of the Fourteenth Amendment.” From here he says that only personal rights that “can be deemed fundamental or implicit in the concept of ordered liberty” are included in this guarantee of personal privacy. 

Based on this conclusion, Blackmun argues that a statute criminalizing a woman’s right to an abortion is unconstitutional. He points out the detriment that the state would impose upon the pregnant women by denying her choice to terminate her pregnancy.  He not only cites physical harms but the psychological distress that would arise from an unwanted child who is unable to be cared for. This detriment has little distinction from the state refusing Cassandra and her mother’s, or, more generally, other seriously incapacitated patients’, choice as to how they will die. The series of harsh treatments that as Cassandra’s mother says “kills the cancer, but also kills everything else in your body” and the loss of autonomy, bodily functions, and the decreasing ability to participate in activities that make life enjoyable should be reason enough for a person to be able to make this private decision.

In Planned Parenthood v. Casey, the court acknowledges that matters i
nvolving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity and autonomy, are central to the liberty protected by the Fourteenth Amendment. At the heart of liberty is the right to define one’s own concept of existence, of meaning, of the universe, and of the mystery of human life. Beliefs about these matters could not define the attributes of personhood were they formed under compulsion of the state.
The state of Connecticut cannot punish Cassandra for having her own beliefs and concept of existence. If enduring the emotionally and physically painful process of chemotherapy does not feel worth it to Cassandra, the state must respect that and let her be. Connecticut claims that this recognized right does not apply to Cassandra on the sole basis that she is an incompetent patient since she is a minor (17 years old) and lacks the responsibility to make the decision for herself. However, previous courts have attempted to maintain the principles of autonomy by allowing a surrogate to make decisions regarding medical treatments for an incompetent patient. A surrogate, typically a close family member who best knows the patient and is most likely to act for the patient’s welfare, must apply the “substituted judgment standard,” by reflecting the patient’s probable wishes. In this case, Cassandra’s mom, acting as her surrogate, has decided to uphold Cassandra’s wishes. Despite being her legal guardian and authorized to make decisions for her daughter, Cassandra’s mother’s voice was discredited by Connecticut as well based on the conclusion that she did not have her daughter’s best interest in mind, accusing her of parental medical neglect. Yet, her mother was simply supporting her daughter’s decision. In fact, she even specifically remembers Cassandra remarking several years earlier that if she ever were to get cancer, she wouldn’t want chemotherapy. Her mother respected Cassandra’s long-standing views on this matter and sought second opinions on what Cassandra’s other options were besides chemotherapy. These actions cannot rationally be taken as “neglect” and, as Cassandra’s surrogate, it is within her right to make these decisions anyway.  

The state rejects the argument that Cassandra should be given the authority to choose whether or not to undergo chemotherapy based on her maturity.  However, their evidence to determine her maturity is founded solely on her behavior in response to the state’s actions.  Following the initial trial court decision that allowed Cassandra to move back home in her mother’s custody if she submitted to the unwanted treatment, Cassandra decided to run away from home for several days and skipped several court-mandated chemotherapy appointments. An article in the Harvard Crimson notes Connecticut’s inconsistency saying, “a state should not have the right to base the legitimacy of its authority over her on the fact that she challenged the court’s legitimacy in the first place.” Essentially, Connecticut’s conviction that neither Cassandra nor her mother is rational in their decision to refuse treatment extinguishes the legitimacy of any right personal autonomy in the first place, as the medical decisions are only deemed rational if they consent to the authority of the state’s decision.

Regardless of her maturity level and competency to make a decision, if Cassandra was born only several months earlier, the state would have no interest in this matter at all since she would be 18, and therefore considered old enough to make rational decisions.  This fact is impossible to ignore as it highlights the legitimacy of the state’s interest.  While protecting a minor from making a fatal decision is valid, they cannot justify the difference that only a few months would make on an individual’s capability to make a decision.  Cassandra’s lawyer points out this key point, asking “Can a smart and knowledgeable 17-year-old make the same choice, for better or for worse, than she would be able to make without state interference nine months from now when she turns 18?” Once a person turns 18, their decision-making skills do not automatically improve.

Many states have made efforts to counteract this fact by adopting a Mature Minors Doctrine, which holds that some minors possess the maturity to make their own medical decisions, even if they are younger than the age of legal adulthood. As of 2013, seventeen states have recognized some form of this doctrine. This law generally gives minors the ability to consent to medical treatment against the wishes of their parents, often relating to giving teenagers the right to get an abortion. Connecticut is one of the states that has not implemented any aspect of this legislation and instead continually refuses to acknowledge that there is no rigid, defining age of maturity. Their complete denial of this inconsistency undermines their claims of governmental interest by not truly evaluating a person’s maturity beyond their age. Courts have ruled that minors can refuse treatment before. In 2007, 14-year-old Dennis Lindberg died of leukemia after refusing to undergo life-saving blood transfusions. The state of Washington allowed him to make the decision for himself because he was a Jehovah’s Witness and blood transfusions are banned in his faith. This is no different from Cassandra.  While her decision might not be influenced by her religion, it is still based on her own beliefs on human existence.  

Admittedly, a 17-year-old girl deciding to succumb to a disease that will most likely end her life is an agonizing thought. Yet, it must be recognized that no matter what, death is one of the most mystifying aspects of human life. Ultimately, it has to be up to the individual to rationalize their concept of it for themselves. Permitting Cassandra to “form and live in accordance with her own conception of a good life, at least within the bounds of justice and consistent with others doing so as well” is a right that the state simply cannot repeal. If Cassandra would rather succumb to her death than endure the “poison”  that would be put into her body to counteract her dying and the emotional toll it would take on her, then she should be able to. The state’s interest in her maturity to handle this based on her age is essentially arbitrary and their failure to yield to her wishes as well as her legal guardian’s sacrifices both of their liberty altogether. It reveals that regardless of whether someone is capable of making a rational decision or not, if it is not in accordance with the ideas of the authority, then the authority may disregard it. Connecticut’s actions, despite its good intentions of safeguarding health and protecting a minor, cross personal boundaries that destroy Cassandra’s individual autonomy and lack any compelling justification. This case, along with others cited throughout this paper, clearly illustrates that a governmental interference with a noble cause, if left unchecked and pushed too far, can cause more damage than good and ultimately threaten an individual’s inherent right to free will and independence—two core values fundamental to a democratic society.