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© 2003 American Society for Clinical Oncology
Just Whose Autonomy Is It?From the Harry R. Horvitz Center for Palliative Medicine (A World Health Organization Demonstration Project) and Hospice of The Cleveland Clinic, Cleveland, OH, and University of Texas M.D. Anderson Cancer Center, Houston, TX. Address reprint requests to Mellar P. Davis, MD, FCCP, Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic Foundation, 9500 Euclid Ave, Cleveland, OH 44195; email: davism6{at}ccf.org.
CD IS a 57-year-old woman diagnosed with advanced ovarian cancer and a painful partial small bowel obstruction associated with cramps, episodic nausea, and vomiting. She was palliated with a continuous infusion of morphine 4 mg per hour, octreotide 1,200 µg continuously infused over 24 hours, haloperidol 1 mg every 12 hours (every 4 hours as needed), and glycopyrrolate 2 µg by mouth every 12 hours. Multiple chemotherapy programs had failed to reverse the disease. She had undergone several laparotomies and was no longer a surgical candidate. She was referred to hospice home care. Unbeknownst to her physician, she had stored away sustained-release morphine. She wanted the morphine available for the purpose of suicide when she judged that she had become a burden to her family. She remained ambulatory and had many friends who visited her daily. She did not have any religious affiliation and expressed animosity toward state and federal laws that she perceived as imposing Judeo-Christian ethical values on her right to choose how and when to end her life. She was resolute and "rational" about her desire, sometime in the future, to "end it all."
Autonomy refers to the human capacity for self-determination and independence.1 It is a guiding principle for contemporary health care ethics, whose principles also include beneficence, nonmaleficence, and justice,2 as well as (according to some authors) utility and self-development.3 The emphasis on patient autonomy during the past three decades arose in response to various civil rights movements, medical paternalism, and abuses within medical research. Autonomy, more than any other word and concept, has crystallized the contemporary emphasis on patients’ rights. In addition, patient autonomy is the ethical foundation for informed consent and informed refusal and patients’ rights to privacy and confidentiality. Autonomy is multifaceted in its meaning. Immanuel Kant4 asserted that autonomy should be governed by rational choice. In his view, irrational decisions governed by blinding desires should not be considered autonomous. However, John Stuart Mill5 argued that persons have the right to self-determination as long as they do not harm others, ie, someone’s autonomous actions should not be impeded except to prevent harm to others. In contrast to Kant, Mill’s emphasis was on preferences and desires rather than rationality. The views of both philosophers strongly influenced the evolution of medical decision making and clinical ethics in all spheres, including end-of-life decision making and requests for physician-assisted suicide (PAS).
Patients’ autonomous choices and informed consent usually take place within a process of collaborative decision making with their physicians and families. Together, physicians and patients discuss and negotiate treatment goals. Physicians, using their medical expertise, provide advice and recommendations concerning alternatives and options, on the basis of medical judgment about reasonable expectations of benefits and risks. Patients are experts about their own lives and their psychosocial-spiritual circumstances, and so contribute to collaborative decision making by expressing personal preferences, beliefs, and values. In the context of a physician-patient partnership, patients may veto recommended but unwanted treatment, and physicians may veto (and not even disclose or discuss) overly harmful, futile, or useless treatments and procedures. A Kantian view of autonomy, with an emphasis on rational choice, supports this partnership and relational model of decision making that incorporates mutual respect, dialogue, and reasoned negotiation between physicians and patients. However, an outgrowth of Millean autonomy is "consumer autonomy" (with an emphasis on patient preferences and desires), which encompasses an extension of a patient’s right to demand specific interventions, despite deviation from established medical standards. In this Millean context, patient choice or demand will often be divorced from physician expertise, judgment, recommendation, and autonomy. Physicians become mere instruments or tools for carrying out patient preferences, being obligated to provide the desired or demanded service. For example, physicians in this context could be seen as obliged to resuscitate terminally ill patients based on patient or surrogate demands, even if a physician judged that cardiopulmonary resuscitation would be physiologically futile for a specific patient. Patients’ preferences and wishes trump reasonable and rational considerations and medical judgments about burdens, benefits, and outcomes. The physician-patient partnership dissolves into a one-sided emphasis on patients’ desires and demands.
A Millean view of autonomy can also be seen as contributing to the growing acceptance and even demand for PAS. Justifications for PAS proposals (whether for individual case management or for a change in social policy) are (1) an individual’s right to choose6 and (2) patients’ control over the circumstances of their dying.7 With more and more persons dying in hospitals and nursing homes, many tethered to unwanted life-support systems, patients are asserting themselves and winning back some control over their dying days. For some, the desired road leading to a peaceful and dignified death seems attainable only when the gate to PAS is opened. An interpretation of autonomy that asserts that patients have the right to have their desires and preferences always honored, as long as no one else is harmed, provides an ethical justification for PAS and for patients taking back control over their dying. Unfortunately, in the process of patients making choices about dying and death, there are indications that patients misunderstand their options for end-of-life care.8 Further, there are a variety of legal and ethical myths (eg, if a physician administers high doses of medication to relieve pain in a terminally ill patient, the physician will be criminally prosecuted) that can undermine good care and ethical practice at the end of life.9 Many patients who request PAS are either depressed or are undergoing existential or spiritual crises that confound cognitive clarity and interfere with an appropriate understanding and appreciation of end-of-life options. The administration of death through PAS may short-circuit appropriate treatment of more substantial issues and concerns. In the end, consumer autonomy, limited only by harm to others, will radically change the medical profession into a service industry. Physician judgment based on knowledge, expertise, skill, and practical wisdom will be subservient to patient desires and demands. The physician-patient relationship, built on mutuality, reciprocity, and respect, will falter. Medical ethics will be potentially reduced to a single guiding principle, and the principles of beneficence, nonmaleficence, and justice will become secondary concerns. In its place will increase an ethic of consumerism and unilateral freedom of choice for patients.
In discussing CD with the hospice physician, the hospice nurse revealed the patient’s plan for use of the stockpiled morphine. A home visit by the nurse and physician was arranged with the patient’s approval. After counseling her, the nurse and physician offered the options of hospitalization for psychiatric evaluation and/or the removal of accumulated morphine from her home. CD chose the second option, and the hospice nurse removed the morphine from the home. CD was reassured of the commitment of the entire hospice team toward her and her symptom management. During the same home visit, an agreement to forgo suicide was signed by CD, and her husband made it clear that he was devoted to her and expressed his desire to care for her at home. She remained at home under the care of the hospice team and continued to receive symptom-control medications. Over the next 2 weeks CD’s resolve toward suicide waned, and at a second home visit she expressed sorrow for her previous words and behavior. Despite a difficult clinical course, which included intermittent vomiting, CD did not reconsider suicide as an option. She died at home 2 1/2 weeks later relatively pain-free and in the care of her family.
Patient autonomy must be balanced with other ethical principles, such as beneficence, nonmaleficence, and justice. Millean autonomy, focused exclusively on desires and preferences, is not greater autonomy. Kant’s idealized autonomous individual is one who checks desires against the law of pure practical reason.10 This can only be approximated in patients who are vulnerable because of physical or psychologic illness and who have impaired cognitive or volitional capacities caused by progressive chronic illness. Although a Kantian view of autonomy may be preferred to a Millean view, it is not completely satisfactory because of the contingencies and constraints of clinical situations. Both views of autonomy (Kant’s and Mill’s) can involve individual choice with little consideration of the social context of the patient.10 A model of autonomy that takes seriously the clinical context of the human-social matrices of clinical encounters (clinical autonomy) involves an interactive, relational, dependent, and interdependent approach to decision making. In this context, patients are empowered by family and physicians to consider the values, duties, and commitments of all those involved and directly affected by patients’ decisions, including, but not exclusively, the values of the patients. The main issue should not be whether the patient or physician should be given decisional rights but rather how to enhance the autonomous decision-making capacity of patients within their social contexts.
We recognize the help of George Agich, PhD, in reviewing the manuscript and Michele Wells in preparing the manuscript.
1. Miller B: Autonomy, in Reich WT (ed): Encyclopedia of Bioethics, Revised Edition. New York, NY, Simon and Shuster MacMillan, 1995, pp 215–220 2. Beauchamp RL, Childress JF: Principles of Biomedical Ethics (ed 4). New York, NY, Oxford University Press, 1994 3. Randall F, Downie RS: Palliative Care Ethics: A Companion for All Specialties. Oxford, United Kingdom, Oxford University Press, 1999 4. Kant I, Paton HJ: The Moral Law; or, Kant’s Groundwork of the Metaphysics of Morals. London, United Kingdom, Hutchinson, 1948 5. Mills JS: Utilitarianism: On Liberty. Warnock, M. (ed). New York, NY, New American Library, 1962
6. Wilson KG, Scott JF, Graham ID, et al: Attitudes of terminally ill patients toward euthanasia and physician-assisted suicide. Arch Intern Med 160:2454–2460, 2000 7. Kelner MJ, Bourgeult IL: Patient control over dying: Responses of health care professionals. Soc Sci Med 36:757–765, 1993
8. Silveira MJ, DiPiero A, Gerrity MS, et al: Patients’ knowledge of options at the end of life. JAMA 284:2483–2488, 2000
9. Meisel A, Snyder L, Quill T: Seven legal barriers to end-of-life care: Myths, realities, and grains of truth. JAMA 284:2495–2501, 2000 10. Secker B: The appearance of Kant’s deontology in contemporary Kantianism: Concepts of patient autonomy in bioethics. J Med Philos 24:43–66, 1999[CrossRef][Medline]
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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HERE’S THE CASE
AUTONOMY
