Anagogy of Autonomy
- Ann Lewis Boyd, Ph.D.
Eubios Journal of Asian and International Bioethics 10 (2000), 113-119.
Dean of the Graduate School and Professor of Biology
Hood College, 401 Rosemont Avenue, Frederick MD 21701, USA
The philosophical and ethical concept of autonomy is herein examined, ex post facto, using an existential lens to examine the process of a personal friend's dying. Anagogy, defined as interpretation of a word, passage, or text that finds beyond the literal, allegorical, and moral senses a fourth and ultimate spiritual or mystical sense, is intended to enlarge the understanding of the use of autonomy in this case. The idea of personhood linked inextricably to reason is, therefore, understood as empowering an individual to choose among various actions, to define and redefine life goals, and to give priority to selected values and moral tenants, which reveal a moral hermeneutic. Conditions and circumstances, existentially exposed, limit choice in unexpected ways, such that the predicted value of autonomy is vulnerable to misuse or misunderstanding. The intent to respect the dignity of every person is central to the philosophy of Respect for Persons ethics, and assumes that autonomy, as freedom of the moral agent, is a moral duty. Implicit reality of freedom is, in a practical sense, essential to being rational agents who can thereby exercise informed choice. The moral law, law of freedom, involves the autonomy of the will and an ultimate end to which all action is directed. Defined as the highest good, morality unites virtue and happiness by ascribing the ultimate end sought as God. The freedom to use rational will finds principles within its own rational nature. The ability to create maxims is autonomy of the will, which equates with the dignity of persons. My recent experience as a companion to a personal friend with a terminal illness inspired me to re-evaluate the concept of autonomy as it is too often interpreted in modern ethical discourse as a individualistic right of choice as opposed to the hermeneutic of dignity of person. This paper describes a shift of position in understanding the paradox of autonomy in this existential context.
Philosophers and ethicists tout autonomy as the premium characteristic of individual freedom and moral agency. The ideal of personhood is linked inextricably to reason, through and from which, persons may choose an action or inaction, according to their virtues of character, life goals, or intention to adhere to a set of values, divine commands, or moral tenets. Yet, freedom to act in accordance with the will can be circumscribed in ways that render the thinking process moot, void of independence, and bereft of freedom. Moral agency is the freedom to reason and to act accordingly, to endorse, accept, reject, modify, or define a hermeneutic of the good. If a person truly freely chooses to act in accordance with their will, they act autonomously. Thus, acting according to the will then becomes the root of autonomy consistent with a person's moral law, the interpretation of which is derived by synthesis of the prescribed hermeneutic and the individual recto ratio.
Conditions and circumstances of an individual may alter her freedom of choice in unexpected ways, to such an extent that principle of autonomy enacted in the moral agency of a patient is radically different in praxis. Bea, a woman aged 61, experienced pain in the upper left quadrant of her abdomen in April 1999. Examination and preliminary diagnostic tests conducted in the emergency room, by a doctor the woman had never seen before, revealed "shadows in her liver and a gallstone in the gallbladder." After several days of diagnostic tests and procedures, the doctor said, "You have metastatic cancer in your liver of unknown primary origin. We have not found where the cancer began, most likely breast or lung, but there is no confirming evidence on the upper Computerized Tomography (CT) scan; so, we will treat you with chemotherapy in an effort to reduce the cancer mass in the liver and hope to offer you some quality of life." Throughout the process -- almost a week in the hospital, with four different doctors (an oncologist, a surgeon, a gastroenterologist, and a gynecologist) -- the patient smiled, nodded, assented to all suggested offers of tests and listened to reports of the results. Rarely did she ask a question or disagree with an offer of help from a nurse, doctor, lab technician, or friend.
The passivity she demonstrated was contrary to her normal life style in which she was more prone to question than to accept any answer as definitive. Bea was a curious person, who had always wanted to know why something was true, to investigate and understand the cause, the purpose, and the value of any given piece of information. She was always a caring, generous, courageous, and compassionate woman. There she lay, in pain, with the news that she had a short time left to live, that the suggested chemotherapy was to reduce the cancer, not cure her. None of the doctors talked of cure or remission, only of reducing the amount of tumor so that she could be free of pain and pursue a few things that might be important to her.
The nurses and I pushed her to question the doctors. She remained passive. When I asked her why, she responded with a question, "What am I to say; how do I know what to ask? If Dr. E recommends chemotherapy, what difference does it make what the compounds are; what do I suggest he use? I don't know one chemotherapy agent from another." We discussed why it is important for her to know all she could about her disease and why her participation might be important. She tried to ask questions, but her nature was so gentle she could not assert herself in a way that might question the knowledge and authority of the doctor. Finally, with some frustration, and a poor attempt at humor, I asked, "If you are not going to exercise your autonomy, can I use it?" She agreed that I could ask all the questions I wanted, and I did! "What are the agents you intend to use? What are the side effects? How will you know they are helpful? When will you know to stop if they are more harmful than beneficial?" She smiled and nodded and listened. Sometimes she would struggle to ask a question, but always respectful, accepting answers, polite to all attendants, aware of all visitors, and courteous to everyone. After she received three doses of Carboplatin and Taxol, the doctors repeated the Computerized Tomography scan. It revealed that the tumors were still growing unabated in her liver. The pain and nausea she had endured, as a result of the chemotherapy, had not retarded or reduced the cancer. Bea and her doctors agreed to discontinue the chemotherapy because additional chemotherapy was more likely to weaken her further than to help her achieve the quality of life she desired.
When she was very ill, between the second and third dose, she talked with me about whether to take the third dose; but she always returned to the idea that she had committed herself to three doses. If she didn't try, her family and church friends might find her faithless, rather than courageous and faithful; she didn't want to leave a legacy of doubt in anyone's mind that she had more cancer than medicine could cure. Our conversations focused on what faithfulness meant in the context of her religious tradition; what would God want; what do you want; what is reasonable and consistent with your belief about life and death? It was clear that she did not fear the event of dying; rather, that her fears were of lingering, being a burden to others, and existing in a body that was no longer able to support a meaningful life, one capable of participation and interaction. She talked of sorrow in not being able to pursue some of her life dreams, such as traveling after retirement, or continuing to contribute to the community through her volunteer efforts, or enjoying her children and grandchildren longer. Yet, she had no regrets. Her life had been one of compassion and caring for others; she had worked loyally for one company for over 20 years, she had friends in the community, she had helped wherever she could in numerous ways, and she could look back over the years with contentment and pleasure.
We agreed to final documents of a legal nature that would protect her dignity in dying, and funeral arrangements were made in advance. She rested often so that she would have the energy to share a few hours each day with those important to her. When hospice took over the case, it was in order to ensure a peaceful death, and to avoid heroic lingering, an existence that was robbed of life. She could not justify, by faith or reason, actions that would only sustain a body but which could not recover a quality of life. In affirming her faith, celebrating the good in her life, mostly in terms of relationships, family and friends, she chose a shorter quantity of time, with the best quality possible. When she was so weak that only two or three hours in a day could be used to do anything at all, she spent those hours wisely, with friends, family, and work companions, sharing, loving, and giving of the self that had always been others-centered. She died as she had lived, four months later, compassionate, generous, and centered in God.
The case provoked me to rethink the principle of autonomy within the Respect for Persons moral theory (Harris, 1997). As my friend was being diagnosed, I was near the end of a semester course in Biomedical Ethics, and on the last day of class, I wanted to quote Aquinas and say: "All I have said is straw" (Denise & Peterfreund, 1992). Observing this case first hand made me poignantly aware of how the hospital environment with the authority of physicians and nurses, overwhelm the senses and deprive the patient of sleep resulting in a compromised ability to exercise autonomy. Pain reducing drugs further diminish the patient's ability to think and reason. Not one hour passed in five days when medical personnel didn't interrupt sleep or conversation. So persistent was patient care that the individual seemed to be a marginal body with cancer. The cancer was the target of attention and the person embodied in the cancerous shell was left to fend for herself. At night when I would slip back into the hospital after visiting hours, and the constant interruptions were over, we could finally talk. Neither of us had expected this horrible diagnosis or this finality. It was hard to grasp the truth, to think in the face of such shocking news; to plan was impossible.
The doctors or nurses asked the patient to sign informed consent documents without time to reflect or ask questions. Often the legal requirements were done "on the run" while the health care professional chatted or waited with a wheelchair or gurney to take the patient for the tests she was supposedly reading and signing consent forms to permit. Patients may ostensibly give consent, understanding that the test is necessary because the doctor ordered it, whatever it is, no matter what the risk might be. I serve on the ethics committee of this hospital and we have worked hard to provide staff and patients with a guiding document, "Advance Directives and Goals of Care," using a series of questions with space for their answers. The design hopes to draw from the patient her unique values and wishes in matters of treatment. Never in the five days of Bea's hospitalization was any effort made to learn her values. She was asked several times if she had a living will, and her answer was duly recorded, but she was not asked if she wanted a workbook to record her values and wishes. One staff member actually said to her, "Oh, you are much too young to need such a thing, we would do everything for you," which implied that any prior statement in a living will or advance directive would be ignored.
What this incident revealed to me was that we talk about the ideal of autonomy but may act in ways that preempt consideration of the patient as a person. We assume that individual persons -- whose independent moral agency the concept of autonomy is intended to represent -- will consistently act on that freedom. That may be a na_ve presumption based on a casual understanding of autonomy. In the early days of this case, my perception was that we fail to connect the person to the principle. Upon subsequent reflection, a different understanding emerges, one that views autonomy as an evolving process wherein a person experiencing extensive medical procedures makes a series of choices about how to live. The key to assuring a person be able to exercise the full use of reason and moral agency in a process characterized by rapid change and altered life goals requires a beneficent environment, one in which the good of the patient is of obvious prominence (Pellegrino & Thomasma, 1998).
Philosophy of Autonomy
Attributed to Immanuel Kant, the philosophy of autonomy understands the moral imperative as the moral agent's own freely and rationally adopted moral policy. Kant asserts that as moral agents we are all subject to the moral law: restating in the Groundwork that we "repudiate all maxims (personal policies of action) which cannot accord with the will's own enactment of universal law" (Kant, 1964). The opposing alternative is to adopt a moral law from any source external to the person. Moral maturity crucially involves the recognition of autonomy via which persons recognize and endorse a moral value, make it our own, then act as we have freely and deeply resolved to act (Honderich, 1995).
Derivatives of autonomy in modern contexts often miss the mark of Kant's intent and become radically different; some existentialists and analytical philosophers define autonomy as the individual's sovereignty over one's entire choice of moral values and self-construction. This extreme version is seriously and dangerously flawed, because it implies that choice rests entirely on the individual, who begins de novo to construct a value system and goals for personal pursuit.
In applied ethics, respect for autonomy is given as the foundation of informed consent, a concept central to the doctor-patient relationship. The idea of the autonomous person involves more than just the capacity to act on particular desires and choices; it suggests a general capacity to be self-determining, to be in control of one's own life (Dworkin, 1988).
At the core of Kant's philosophy lies a concept of knowledge that transcends the bounds of experience, knowledge that he claims to be synthetic and a prior. That is, one can know necessary truths that do not rest on empirical evidence such as "God exists," whereas "God is omnipotent" rests on an analytic truth, one that already exists and is logically asserted by authorities. The focal point for Kant is the categorical imperative: "Act only on that maxim which you can at the same time will to be a universal law" (Kant, 1964). Maxims are rules that rational agents construct as a way to guide reasoned actions; a kind of thought experiment in which one tests a possible maxim to determine whether it will allow one to act in a way that consistently enables others to act in similar ways without defeating one's own intention. The basic problem is constructing a maxim thoughtfully and creatively that forms a rule for reasoned analysis and action. Since the categorical imperative demands that we select maxims on the basis of their conformity to universal law -- which presupposes that we are able to disregard our inclinations and the thought of our own happiness in choosing a course of action -- Kant claimed that morality presupposes autonomy, understood as the capacity of the will to legislate to itself; that is, to choose maxims for itself independently of desires stemming from one's nature as a sensuous being.
In the Groundwork, Kant assumed that the reality of freedom from a practical point of view is necessary in order to regard ourselves as rational agents capable of reasoned choice; and from this he inferred the validity of the categorical imperative, or moral law, as the law of freedom. For Kant, morality involves not only a law and the autonomy of the will, but also an object, an ultimate end to which all action is directed. Defined as the "highest good," morality consists of the perfect union of virtue and happiness, and this provides the basis for his moral arguments for God's existence as a postulate of practical reason. However complex, his theory is that nature is so ordered as to be intelligible (Guyer, 1992). The rational will does not derive its principles of action by examples from the senses or from theoretical reason; it somehow finds its principles within its own rational nature. The ability to use reason to generate maxims is autonomy of the will: Kant equates it with the dignity of a person.
The idea of moral agency asserts that persons are distinct from other species in their ability to reason, to act as moral agents, and to interrelate with other persons. If the evidence of human life rested solely on physiological functions such as eating, breathing, and having a heartbeat, all mammals would be co-equal but philosophically human beings have intuitively been differentiated from other animals on the ability to be aware of self and others. Unfortunately, acting in accordance with freewill means that a person presumes to know what she or he intends to accomplish as an end. Elevated views of autonomy support rigid liberal individualism and ascribe to humans an ultimate source of value, creating tension between autonomy and beneficence, autonomy and justice, and a blurred image of Respect for Persons.
Doctor-Patient Autonomy for Whom?
When a patient is lying in bed, and there are numerous doctors "on the case," there is an element of trust on the part of the patient that is based on the expectation that the doctors will act in the patient's best interest -- that they will order tests and read results and invite other specialists, so as to achieve an accurate and definitive diagnosis and prognosis. We trust that every test is a useful part of finding an answer to the "problem." Once the diagnosis is made, based on these data, the patient is told, "You have cancer." The doctor, assumedly acting in the patient's best interest, recruits an oncologist, who proclaims, "We will begin chemotherapy immediately." The patient asks, "What will you use?" and the doctor says, "I will pick the agents that will give you the best chance, OK?" The patient smiles and nods in agreement. Why?
Watching this exchange, I realized that the concept of autonomy, as I had taught it, described an ideal without verifiable reality. Bea explained that she felt at the mercy of the physician; she expected him to know what to use, when, and how much. She told me, "I can't argue with him about what to use or which protocol, I don't know the difference."
It is true that a patient is not able to converse as an equal about the choices of drugs, chemotherapeutic benefit, side effect, protocol, or risks associated with such choices. It does not thereby follow, however, that the patient must feel at the mercy of the physician without an opportunity for input. It may be that empathy and compassion compel a physician to shield the patient when recommending frightening therapy in the face of a terminal condition. It could be perceived as beneficence when the physician is aware of how terrifying the news must be and of how profoundly this sudden news alters the entire outlook of the patient and, therefore, wants to reduce the trauma by taking charge in order to help and reduce the burden on the patient. But this attitude can be paternalistic. To know whether the doctor is acting paternalistically, one would have to know his or her motive. Is the physician acting on behalf of the patient to reduce her suffering; or considering the patient temporarily incompetent and, therefore, unable to participate in decision making? Or is the physician truly overriding the patient's free moral agency? If this patient had been offered the range of chemotherapeutic agents and asked to decide, she would have been overwhelmed by the choice, but that lack of knowledge should not preclude a discussion of choices, of why one agent is preferable, with assent from the patient. The oncologist may not intend to reduce the patient to a body with metastic liver cancer of unknown primary, but that is the category of data he is considering when selecting drugs for treatment, in the same way he or she might choose an antibiotic for a bacterial infection. The beneficent choice is that agent which has the best chance of being helpful without doing more harm than necessary. It was clear to Bea that the end sought was not to eliminate the tumor or extend her life by years; rather, it was to slow the progression of the cancer in order to give her a brief span of quality time. The oncologists stated that most of these cancers do not respond to chemotherapy, but if the drugs can reduce the tumor even slightly, it will buy time without unrelenting pain, so that she could do those things important to her, write her last chapter of life in her own way.
In the diagnostic phase of this case, it was unclear to me whether Bea had conveyed her goals to any of the physicians, or if the doctor only assumed and acted on what any rational person would want. I questioned her about her seemingly passive acceptance of the oncologist's recommendations. She explained that she was simply trusting that only the oncologist knew what was in her best interest, and her decision to follow his advice both supported his and her autonomy. She said her acceptance of his professional training, good-will, and knowledge was her "free-choice."
Within the first days and weeks following the awareness that one is terminally ill, and that the heroic efforts will only delay dying, all is chaos. Absorbing such horrific news renders the individual temporarily diminished decisional capacity; she experiences shock and is obsessed with thoughts about what has been done and what has been left undone in her life. In the early stages of treating a terminally ill person, medical professionals may be wiser to risk some paternalistic but benevolent behavior. It may be reasonable to expect that the physician is acting in the best interest of the patient, as a surrogate for the patient's autonomy. This statement may be preferable to casting the burden of decision onto the already diminished capacity of the patient. To require a patient to exercise full capacity of free will and moral agency under such circumstances seems not only unreasonable but also even abusive.
Advance Directive: Can Another Act
To avoid acting in ways that are inconsistent with the values of a patient, it would be optimal to have in place an advance directive in which the patient's values are clearly articulated and shared with the physician who knows and has treated the patient long enough to establish mutual understanding. Unfortunately, this was not the case with Bea, whose personal physician of many years was no longer covered by a change in her insurance, so that when she experienced pain and was admitted to the hospital she was dealing with a medical staff of strangers. And, even though she had read and considered crafting a living will/advance directive, she had not completed the task and had no written directives. Her intended medical power of attorney was a close friend (me), not a family member, and this made speaking for the patient more difficult, especially when family members were often present and participated in doctors' consultations.
To control her pain, Bea was so heavily medicated during the week in the hospital that she was not capable of thinking clearly through any choices. Consequently, she signed documents of informed consent without even briefly reviewing them. She was not, in her words, "waiving her autonomy, rather respecting the professional knowledge of her doctors and allowing them to act autonomously on her behalf." The interests of an incompetent person ought not to be terribly difficult to define, based on a best-interest standard and the willingness to consult with persons who know the patient, or more traditionally, the family who are presumed to know what the patient would want.
To improve the decision-making process, every patient ought to have someone available to speak as their personal representative or advocate, a surrogate decision maker, designated by the patient while well, and indicated on a driver's license or insurance card. Then, if the patient is in an emergency or condition of incompetence, that individual is known to the authorities and the medical professionals as having the assurance of access to someone who can participate in decisions that reflect the values of the patient. There is perhaps an assumption in current practice, that a family member, such as one named beneficiary to insurance or emergency contact person, is that individual. The logic is not necessarily consistent, for one might wish to leave financial property to a child or spouse but not want the burden of medical decision making to rest with that individual, for numerous reasons: the emotional burden of care, the proximity of living arrangements, or the depth of relationship which allows the sharing of personal values and beliefs. In modern medical ethics we often assert that autonomy means that a person has a measure of control over their bodies and their lives through the opportunity to receive medical information about themselves, to choose between alternative treatments, and to refuse treatment (Gauthier, 1993).
Free will -- equated as morality _€ plus natural causality -- identified as knowledge -- merge to form the concept of autonomy. Kant does not require the subjective concept of good, or the perfectionist position of Plato, nor a moral reality as transcending our experience, but a central principle of rational identification of good will as the unconditional good. He begins with the principle of ethics to determine what it means to have a good will. What maxim or principle could be adopted by a plurality of agents, without assuming anything specific about the agent's desires or social relationship? They are to be universal according to the categorical imperative; a universal law adopted from duty to self and others; a formula of ends in itself asserting that we ought to treat humanity, self, or others never as a mere means to an end but always at the same time as an end. Minimally, beneficence and respect for human dignity, Kantian autonomy, is no mere willful independence; it is to have the mode of self-control that takes account of others' like moral status.
To Kant, autonomy simply refers to the capacity to act morally. His view is that man is phenomenal (natural, causally determined), and noumenal (non-natural, self-determining) with the potential for moral virtue in tune with a benevolent God, an immortal soul, and divine providence. He does not use theology to support morality, but his moral theory is a lens for theological epistemology of a sacred text. The person is, therefore, to be a free agent and part of a natural world, so that acting morally in the world assumes that the natural order is not totally incompatible with moral intentions. The person who chooses to act in accordance with a good will (intention), in tune with their world view, is acting morally independent of any future consequences, since, in the deontological view intent is central. The competing and compelling conflicts of duty between self and others are resolved through subjective analysis of the principle of double effect.
This point is clear with Bea when we examine closely whose autonomy is being exercised when the doctor proceeds to order tests that she agrees to have, without fully informed choice. For, in order to arrive at a diagnosis that is helpful to her life plan, the doctor must be trusted and fully autonomous in his right to choose tests and treatments according to the best interest of the patient and to exercise his expertise. Since the two could be perceived to be in conflict, in some instances, it must be clear what the patient desires and values. The situation is not required to be either autonomous or paternalistic, for such a division does not serve the professional ethic of the physician or the best interest of the patient (Pellegrino & Thomasma, 1998). Rather, a compromise of meaning occurs wherein the actions taken on behalf of the patient by the doctor are not paternalistic but professionally autonomous and beneficent. Bea explained that her autonomy was a level of trust that she placed in her doctor, that he was a surrogate decision maker in the process of gathering information to inform her and that she retained the freedom to participate in decisions after she was fully informed. She was freely choosing to have the first doses of chemotherapy knowing there was a small chance of success, and freely choosing to cease when those hopes were unrealized.
Hope or Futility in Terminal Cancer
Chemotherapy, with high toxicity, for a terminal illness that has little hope of long-term remission, may appear futile. The dichotomy is whether the chemotherapy will decrease the patient's strength or improve the patient's condition by reducing both the tumor and the pain. The benefit of hope is important, a hope inspired by doing the chemotherapy, which instills in the patient the idea that treatment is possible and that all is not lost, yet. In cases of low probability, the patient ought to clearly understand how and when the success or failure of the strategy will be evaluated, so that the balance of benefit and burden can be reassessed and discussed. The idea that once the chemotherapy starts, it cannot stop, is contradictory to autonomy and beneficence; the patient ought to remain in dialogue with the doctor, know how the treatment is affecting the disease, and during these months be able to reaffirm their values and life goals.
Death should be seen as the inevitable end point of medicine. The entire strategy should shift from fighting for "life," however poor the quantity or quality, to working toward a peaceful and dignified death, viewed as an integral and necessary part of the life cycle. Callahan notes how compromised the dignity of a person is through a process of what he labels "deforming the process of dying," a deformity caused by attempts to extend disability, frailty, pain and suffering; when all medicine can achieve is to perpetuate these evils, it has failed its primary imperative to "do no harm" (Callahan, 1993). He proposes that the futility test meet two criteria (1) inability to arrest more than momentarily (days or weeks) a deteriorating course of existence and (2) probability that such an intervention could make a peaceful death more unlikely. "Peaceful death ought to have an individual and a public face. People should have a chance at a healthy life, avoid premature death, and then die without the technological brinkmanship that knows no boundaries in the war against mortality." (Callahan, 1993). Deciding whether chemotherapy in Bea's case is heroic, futile, or hopeful rests on the intent of the doctors and the patient, which was to make the first effort to achieve a limited time with improved quality of life, but how many months was impossible to predict. In statistical terms, patients with metastatic cancer of unknown primary have an average length of survival after diagnosis of four months. Using the futility standards of Callahan, it is not entirely clear whether chemotherapy would be considered futile. The intention was clearly to achieve a small quantity of quality time. The sudden nature of the onset of pain, the diagnosis and recommended therapy mirrored an emergency situation: the patient was having unrelenting pain and the recommendation for chemotherapy was based on an intention to relieve the pain by reducing the tumor burden. It is important to view the patient in the context of her personal values as well as the person with the terminal illness. What value chemotherapy had in this case is not evident from the perspective of terminal illness but is supported as palliative care.
A person may have such strong concern for immediate family and friends that even the slightest chance of winning time will be accepted and the concomitant pain tolerated so that she may choose any efforts to sustain a waning life for the purpose of having time to share with children, grandchildren, friends, and family. Bea was able to allocate only a few hours everyday to a project or person, but she chose to do so wisely, with established priorities, so that those who were important to her, and she to them, would have the time to visit, to remember, and to say goodbye. The closing chapter of a life can be as summative as the text, when it is consistently drawn into focus and reflective of the values of the person whose life story it is. As D. Callahan writes in a Troubled Dream of Life (Callahan, 1993), a person dies as he/she has lived. Bea profoundly exemplified this.
It is important to remember that a decision -- in this case, to take the chemotherapy -- was only one decision among many that would be made in the months of her remaining life, and one choice does not hold sway over any future ones. A person may freely choose to take a low-percentage, high-risk effort to achieve a hoped-for end without subsequently being obligated to continue a futile course of action. In this case, once it was clear that the chemotherapy was not achieving the hope, i.e., reducing the tumor, only reducing the patient's energy and quality of life, it was discontinued. That decision was consistent with the first: do what may be done to effect the good, and when the hope is unrealized, cease, in order to achieve the end sought: some measure of quality time in limited quantity.
The decision to stop chemotherapy and enter hospice was an autonomous choice consistent with the patient's values. Her moral agency was based on Christian faith in immortality, a companionship with God that rested on trust, and a conviction that enduring prolonged suffering was not only non-redemptive, but also unnecessary. Her loving concern for others meant sparing others the suffering associated with watching a loved one die, exacerbated by a protracted death. Bea had no fear of death; her fear was of lying in a semi-comatose state, so medicated to ease pain that she would be bereft of thought or interaction with others. In her words, "a body suspended in time, without dignity, is worse than death." Respecting the dignity of persons may require us not to take measures to sustain temporary existence, especially not to protract dying and extend suffering, wherein one views suffering as a mandate without either moral or theological merit. The free will, moral agency, of an individual may be influenced by considerations of family and others significant to the person making these choices. Supporting autonomy for individual persons can mean respecting their dignity, especially when we are able to embrace death as a part of the fabric of life and not some failure to achieve victory over an enemy.
Societies that value individualism seek to ensure individual sovereignty by crafting policies and laws that protect their libertarian rights. The elementary understanding of such policies is that by having laws to enforce freedom, we thereby assure independent moral agency _€ autonomy. The fulcrum of balancing paternalism and autonomy may best be characterized as the informed consent process derived from the Nuremberg Code (Jonsen, Veatch & Walters, 1998). Now almost ubiquitous in modern medical practice, it is assumed that individual liberty and Respect for Persons moral agency are protected by informed consent. Such documents satisfy a legal requirement and ethical conventions but for patients, it is the process that is important. Informed consent intends that a patient voluntarily choose to participate, or not, in a given medical procedure. In this case, an educated woman who knew much about autonomy and informed consent signed several documents without question or discussion of any alternatives, trusting that her doctor was acting in her best interest. The natural and traditional beneficence-based values of the medical professional motivate the doctor to act in accordance with what is perceived to be in the best interest of the patient's health, relieve suffering, and preserve life (Pellegrino & Thomasma, 1998). The natural vulnerability and dependence of the patient makes it easy to elicit agreement to treatment in ways the patient might otherwise not choose. The moral requirement associated with the principles of autonomy and beneficence in medical care requires the allowance and encouragement of competent patients to make decisions about their own lives without any attempt by medical professionals to control those decisions (Childress, 1990). Resting on the assumption that a person has the capacity to be a rational agent, informed consent documents protect the doctor to act for the patient and allow a patient to place into the hands of the professional the right to treat. In saying, "Never simply as a mere means, but always at the same time as an end," Kant allows for the interaction necessary in modern medical practice to treat on behalf of the patient. It may appear at given moments, in the evolution of a specific case, that the patient is but a mere means, whereas, when viewed in the collective whole, it is more obvious that the patient is simultaneously an end. One difficulty is in knowing the values of a patient in order to achieve their unique "ends," rather than working from the assumptions of what any rational person would want. Thus, the phrase, "mere means" may be interpreted as treating a patient deceptively or coercively, without awareness of their "interest" or values (Gauthier, 1993).
Upon reflection, I realized that autonomy is less a principle of the minute and more a facet of process, of relationship: a component of the whole. Autonomy requires an individual to reason, to discern the action that is consistent with her life goals. Autonomy as intended can only take place in a beneficent environment where health professionals respect the dignity of persons. The process takes time and evolves to accommodate sudden and drastic changes. One day, Bea was well, fully engaged in living, productive, vibrant, and active; a few days later, she was lying in a hospital bed learning that she had a terminal form of cancer. Nothing in the moral agency of Homo sapiens preconditions us for such a sudden and life-altering change in self-understanding. Thus, it is imperative that the person, whose dignity we are endeavoring to respect, be given time to adsorb the reality, the changed circumstances, to adjust their priorities and make decisions consistent with their former goals; indeed, to allow them to change those goals as seems wise to them. This effort is difficult to achieve in the hospital environment of testing and seeking diagnosis or in the immediate aftermath of prognosis and prescribed therapy. This process takes time, human interaction, reflection, and freedom. In allowing the person and her family time to talk, to take in the fearful news, to reflect on life, we are respecting her dignity, even as we may proceed to diagnose and treat. No decision ought to lock a person into subsequent actions. Respect for the patient's dignity demands that we maintain the flexibility to change course, to re-evaluate the benefits and burdens in a continuous dialogue and trust, and ensures that the patient is participating, acting, consistent with her own goals and abilities. This respects the dignity of the person (Katz, 1984).
When the concept of autonomy is taken to mean individual liberty, having or choosing whatever any individual may want, especially when the choice circumscribes the broader values of community, family, or country, it is rightly held to be abusive, indeed a polluted connotation. Communitarians remind us that the individual is never entirely singular; whereas one may act in accordance with her own moral belief or life goals, one does not come to this knowledge de novo, but instead through the collection of educational, cultural, and religious traditions to which one has been exposed, and through which one has come to understand herself and her world. The comprehension of a value or goal can only make sense for institutions through the collective context of social convention and consensus. The liberal individualism supporting the notion that individuals have no obligation to others or to society that is not voluntarily assumed is a frequent claim against autonomy made by communitarians. A good society must recognize obligations to help others; its members must have virtues such as compassion, love, and caring. They should recognize a commitment to society to maintain social practices and institutions that establish and promote these virtues (Callahan, 1984). Contrarily, it is not necessary to eliminate all benefit within the theoretical ideal of autonomy, by the many examples of miscarriage of implementation, for the fundamental values can be maintained without excessive individualism (Sher, 1989; Taylor, 1985). In the claim of communitarians, we are reminded that one does not live alone, that persons are social beings, that the individual needs and derives benefit and pleasure from interaction with others, that the shared societal goals and goods shape and form individual preferences, desires, and satisfactions through a process of acceptance or rejection, affirmation, or modification. One can take what a group asserts as good and refine the values according to one's own reason; this is the extension of an autonomous person, within a matrix of complex and influential social structures. A free society makes autonomy possible, but a society that does no more than respect individual rights, without the supporting benefit of neighborhood associations, friendships, civic groups, political parties, would be liberal but disconnected and non-supportive (Gutmann, 1985).
Both individual liberty and collective compassion, beneficence, and caring, while allowing persons to make value judgments that may differ from our own, create the balance wherein the moral agent is free to choose and act accordingly. A defensible theory of the nature and value of individual autonomy will fall between radical individualism and extreme collectivism; it should explain the obligations to create and maintain social and political institutions that support the exercise and flourishing of autonomy. It must explain how the exercise of autonomy depends on the opportunity range and values given in the traditions and structure of a society. It will recognize other fundamental values and explain their place in decision making. Then, we can rest content that international conventions that quote informed consent policy requirements, derived from a premium value on autonomy and freedom of will, are compassionate and appropriate to ethical discourse (Miller, Encyclopedia of Bioethics).
Death is a personal matter, a family matter, a theological moment, and a cultural event. Autonomy is necessary for the existence of a moral act but is insufficient to justify one; the justification of the act hinges on the end to which autonomy is employed. If it is for a noble end, then it is upheld; if depraved, then it is proscribed. Thus, autonomy is vindicated only within the good it achieves (Safranek, 1998).
Autonomy provides one important conceptual frame for the praxis of Respect for Persons: treating another as a person of dignity. Recognizing autonomy as a freedom to know, to will, and to do, is consistent with the concept of moral agency (Kant, 1964). Allowing the person to use their reason and act according to their spiritual beliefs requires a dynamic process. When patient and physician both exercise individual autonomy and collaborate in choosing actions that support the values of the person, then autonomy is intrinsic to respecting a person. In terminal cases, those who pursue the goals of medicine may be tempted to push the boundaries in a pseudo war against death, whereas respecting a person's dignity may mean giving a greater place to death in the fabric of life. Recognizing death as an essential part of the life cycle shifts the focus from "do all to sustain life, of any kind," to an acceptance of death as an outcome of good medicine. The freedom of a person to pursue goals in their life plan within a just society means freedom to forgo heroic measures to sustain a lingering existence in order to spare others parenthetical suffering, to preserve resources, or to faithfully claim a theological conviction. The consistency of life patterns, values, and faith expressed in the terminus of a life can be a profound affirmation of their sincerity. Faith in an everlasting life in the presence of a loving God provides a ray of eternal hope compelling the dying person forward through a transcendent passage. Autonomy is more appealing as one thread in the fabric of Respect for Persons which encompasses a unity of community (family, friends, and health care professionals) than as a singular signal of individual liberty.
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