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© 2002 American Society for Clinical Oncology
Revisiting Truth and Consequences: What to Do When the Patient Doesn’t Want to Know
The Harry R. Horvitz Center for Palliative Medicine, A World Health Organization Demonstration Project in Palliative Medicine To the Editor:We often put our best experiences (and patients) forward as examples of good medical care. However, Drs Neff, Lyckholm, and Smith have graciously written about their frustrating experiences.1 We can only commend them in this regard. However, we believe we should revisit the case presentation. We acknowledge our limitations for we were not there, and we can reassure the authors that their experience is common to all who care for terminally ill patients. With that said, four points can be addressed: plan of care, communication, physician responsibility, and futility. Plan of care: The ancillary services seemed to have failed to enter into the decision-making process. Surgery was not to be, as "the patient, dying of metastatic cancer, was continued on futile treatment and hoped for surgery that ‘not only was not going to occur, but probably didn’t exist.’"1 In addition, the palliative specialist, Dr Smith, was deferring to the oncologist.1 Therefore, it seems that a plan of care, although covertly made, was not made common knowledge to the patient or mother. Certainly there was a plan of care, established by default. Antitumor therapy was appropriately avoided, but because of failure by both the surgeon and the oncologist to act, procedures (total parenteral nutrition and cardiopulmonary resuscitation [CPR]) deemed inappropriate that should have been suspended were continued by default. There was a failure to establish and communicate an appropriate plan of care to the patient within the context of her illness. Communication: The lack of communication of an appropriate plan of care led to duplicity and limited patient autonomy.2-4 If the patient knew the appropriate plan of care for where she was in the trajectory of her illness, it would have given her the opportunity and the freedom to act on the plan by agreement, by disagreement with the second opinion, by arbitration through the medical ethics committee, or by transfer of care. The communication, even if unilaterally initiated, could have been handled with compassion and respect. Physician responsibility: Physicians cannot be excused from the responsibility of professional care (and standard of care) because of a lack of communication, communication barriers, or patient demands.3-5 We cannot shrug our responsibility by stating "I am getting tired of being held responsible for fixing all of society’s ills." Physicians are free moral agents and are not victimized by either patient autonomy or societal issues, whatever they may be. Principles that deny physicians any power to act on professional value leave physicians powerless to refuse to perform actions which harm patients or which are below the standard of care and are morally reprehensible.4-6 "Physicians would be complicators of substandard care without accountability."4 A patient’s negative right to refuse treatment cannot by itself imply any positive right to demand treatment. Such a right without qualification (standard of care) would violate the negative rights of physicians whose services are sought.4 It is not obvious that the routine application of CPR (as a standard of care) represents either good medicine or good ethics.7 It is a fallacy to believe that providing CPR by default is a value-free judgment.7 Physicians have both the right to make value judgments and the responsibility to communicate such decisions to patients based on the standard of care, even if such conversations are initiated unilaterally.4 Futility: Physiologic futility is centered on probability (diminishing returns, which rarely reach zero).8 The degree of certainty must be absolute before the futility card is played. Otherwise, a value judgment related to the course of care is squarely within the purview of the patient and the physician’s moral agency is severely limited. This leads to the nonsensible practice of both offering CPR and making efforts to have patients retract its use by logic, pleading, and—even worse—as a final resort, a feeble attempt at resuscitation, ie, the "slow code." If CPR is the alternative to certain death and physiologic futility is the reigning principle, then codes could never be stopped because there is always a chance. Physicians would be morally obligated to offer any and all experimental therapies and surgeries to terminally ill patients for whom conventional therapy has failed.4 Eligibility criteria for such treatment consist only of patient consent. Medical futility revolves around the goals of medical therapy and the reasonable benefits expected from therapy.9-11 Futility in this context is treatment that will not produce the benefits sought by the patient.10 Futile therapies are those that result in temporary and fleeting benefits and that do not improve conditions, or "treatment which prolongs the dying process and offers no realistic chance of improvement."10 In this case, both total parenteral nutrition and CPR were medically futile. Both can generate harm, as demonstrated by swollen legs, shortness of breath, loss of dignity, and (potentially but not realized) bone fractures, without benefit. What could have been done differently? Within the context of a family meeting, the patient and mother could have been informed that resuscitation was not medically appropriate for various reasons and that CPR would not be performed. Further discussion would probably have ensued, centered on her clinical course and reasons why surgery and chemotherapy were inappropriate. The patient could have either agreed with the course of action of aggressive palliative care or expressed her disagreement, which in most instances can be resolved by second opinion, ethics consultation, or (rarely) transfer of care. The palliative specialist would have maintained a sense of integrity. In summary, the failure to communicate can lead to a wide range of adverse effects by violating both the physician’s sense of appropriate care and the patient’s autonomy (did we really know she wanted CPR?).11 We should be compassionate and understanding when we do communicate with patients, but communicate we must if we are to avoid a greater harm. REFERENCES
1. Neff P, Lyckholm L, Smith T: Truth or consequences: What to do when the patient doesn’t want to know. J Clin Oncol 20: 3035-3037, 2002 2. Tomlinson T, Brody H: Ethics and communication in do-not-resuscitate orders. N Engl J Med 318: 43-46, 1988[Medline]
3. Tomlinson T, Brody H: Futility and the ethics of resuscitation. JAMA 264: 1276-1280, 1990 4. Tomlinson T: Refusing demands for attempted resuscitation: Ethics and hospital policy, in Blank RH, Bonnicksen AL (eds): Emerging Issues in Biomedical Policy. New York NY, Columbia University Press, 1992, pp 44-56 5. Tomlinson T: The irreversibility of death: Reply to Cole. Kennedy Inst Ethics J 3: 157-165, 1995 6. Tomlinson T, Czlonka D: Futility and hospital policy. Hastings Cent Rep 25: 28-35, 1995[Medline] 7. Stein RS: CPR-not-indicated and futility. Ann Intern Med 124: 75, 1996 (letter)[Medline] 8. Truog RD, Brett AS, Frader J: The problem with futility. N Engl J Med 326: 1560-1564, 1992[Medline] 9. Brody H, Tomlinson T: CPR-not-indicated and futility. Ann Intern Med 124: 75-76, 1996 (letter)[Medline] 10. Daar JF: A clash at the bedside: Patient autonomy v. a physician’s professional conscience. Hastings Law J 44: 1241-1289, 1993[Medline]
11. Tomlinson T, Brody H: Futility and the ethics of resuscitation. JAMA 264: 1276-1280, 1990
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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