- Email: [email protected]
“There Is Power in the Blood”: A Case Discussing Ethical Issues of Utility of Resources
D
Case Studies in Ethics from the G.V. “Sonny” Montgomery VA Medical Center and the University of Mississippi Medical Center Editors Sharon P. Douglas, MD Errol D. Crook, MD
ecisions regarding utility of interventions near the end of life in terminally ill patients are sometimes difficult to make. In our current U.S. medical practice of advanced technology we are often left with the question “should we” when considering life-prolonging mechanisms. These decisions must be individualized at the bedside. The physician as fiduciary must make medical judgments about utility and respect patient values and preferences in making decisions. Also, it is imperative that the patient (and family) be properly informed of treatment goals and limitations. In this article, difficult decisions about utility of blood products in a patient with a terminal illness are discussed. The case is presented as an ethical dilemma that is analyzed by an orderly review of 4 topics (medical indications, patient preferences, quality of life, contextual features) as suggested by Jonsen, Siegler, and Winslade in Clinical Ethics.1 This 4-topic approach provides a systematic way to assist in identifying, analyzing, and resolving ethical problems. Case Presentation
“There Is Power in the Blood”: A Case Discussing Ethical Issues of Utility of Resources Authors Sharon P. Douglas, MD Errol D. Crook, MD Marti D. Reynolds, Mdiv Cheryl G. Robinson, FNP Kent A. Kirchner, MD
ABSTRACT: The allocation of medical resources is often a great concern in the United States. This article discusses a case concerning utility of resources in a patient with a terminal disease. We assert that the goals of treatment tailored to an individual patient should be made at the bedside by a fiduciary (physician) in conjunction with the patient’s preferences and values. There is great responsibility in making these decisions and it is critical that they be made at the bedside with the patient and family clearly aware of the goals of treatments and informed of treatment limitations. KEY INDEXING TERMS: Fiduciary; Blood products; Ethics; Futility. [Am J Med Sci 2001;322(3):145–150.]
From the G.V. “Sonny” Montgomery VA Medical Center, Jackson, Mississippi (SPD, EDC, MDR, CGR, KAK) and the University of Mississippi Medical Center, Jackson, Mississippi (SPD, EDC, KAK). The statements and opinions contained in this article are solely those of the individual authors and contributors and are not necessarily those of the editors, the Southern Society for Clinical Investigation, or Lippincott Williams & Wilkins, Inc. Correspondence: Sharon P. Douglas, M.D., G.V. “Sonny” Montgomery VA Medical Center, 1500 East Woodrow Wilson Drive, Jackson, MS 39216 (E-mail: [email protected]). THE AMERICAN JOURNAL OF THE MEDICAL SCIENCES
WP, a 91-year-old man, presented to the hospital approximately 3 years ago with complaints of weight loss and abdominal pain. Gastroscopy revealed adenocarcinoma of the stomach but there was no evidence of metastasis. His past medical history included only hypertension and he was thought to be a good surgical candidate. Surgical resection for potential cure was offered to him; however, he refused surgery and stated that he did not want any treatment for the cancer. He was discharged home to follow up with his primary care physician. Several months later WP developed anemia. His physician discussed the use of blood products. WP wanted transfusions of blood products as needed and his primary care physician felt this was appropriate treatment. However, the physician explained that blood products were a temporary treatment and would become useless at some point in the future. Over the next 2 years, WP required 54 transfusions of packed red blood cells; these transfusions became almost a weekly occurrence. At each transfusion, it became more and more difficult to match blood from donors because of antibodies. He had begun to experience transfusion reactions and intravenous access was becoming a problem. Both the gastroenterologist and the oncologist had recently re-evaluated WP’s condition. The gastroenterologist had done endoscopy again to see if endoscopic procedures could alleviate bleeding. He felt no such procedure could be performed. Also, embolization was not considered a treatment option. The oncologist felt palliative radiation at this point would not be helpful. The patient continued to refuse any form of chemotherapy. Both the gastroenterologist and the oncologist felt that current treatment options should consist of comfort measures. The hospital team that had taken care of WP on the last several admissions felt the risks of transfusions were beginning to outweigh the benefits. They cited difficult intravenous access and transfusion reactions as reasons for this concern. They also felt continuing to transfuse blood constituted a “perhaps futile” lifesupporting treatment being given in a terminal condition. WP felt his quality of life at home was good and the transfusions were important to continuing this quality of life. He did not feel that receiving blood products was excessive or unwarranted. He wanted his primary care physician’s opinion about blood products at this point; however, the primary physician felt he could not participate in this decision stating “I am too personally involved to make a recommendation by myself.” The hospital team felt apprehensive about WP’s course at this point and they were unclear about the boundaries for continued transfusion.
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They felt that continuing blood products was risky and perhaps futile treatment, yet they were struggling with withholding a treatment from a competent patient who wished it. They requested an ethics consult.
Case Analysis The ethics committee convened and heard the case. Before going to the bedside, several committee members discussed the situation as a clear case of a futile life-supporting intervention and an inappropriate use of resources. The committee also consulted with an outside ethicist by phone. This consultant referred to use of blood products as “bad medicine” and an example of “pouring blood down the drain.” The recommendation at this point seemed clear to the committee. However, as mentioned above, an orderly review of the medical indications, patient preferences, quality of life, and contextual features is a systematic method to identify, analyze, and resolve ethical problems.1 This case was evaluated in that manner. In considering the medical indications, it is known that without early diagnosis and complete surgical resection, the prognosis of gastric carcinoma remains poor.2,3 WP had refused surgery when it could have provided a possible cure; therefore, his prognosis and overall condition were poor. The goals of therapy to that point had been focused on comfort measures. At the time of current hospitalization, WP’s condition had greatly worsened. He had lower extremity edema, cachexia, ascites, and intermittent bowel obstruction. However, he was still achieving clinical relief from the transfusions. Blood transfusions were required more frequently to relieve the patient’s symptoms. With increasing problems with transfusions and with intravenous access, there was concern that WP was reaching a point at which the medical risks of transfusions were beginning to outweigh their medical benefits. The patient was able to make his preferences clear. At 91, he was still quite “sharp.” He had decision-making capacity, made his own decisions, and had a good understanding of his choices. Although he seemed to understand that surgery was his only chance of cure, it was his preference not to have surgery. He stated God told him surgery was not best for him. WP did accept comfort measures offered, which, to him, included blood. He felt blood improved his symptoms, allowed him to return to his daily routine, and was not “heroic.” He was clear on what he would not accept. He would not accept any surgery, chemotherapy, or radiation. He did not want to be placed on a mechanical ventilator and he did not want cardiopulmonary resuscitation. He also had consistently stated that he did not want medically provided nutrition. He had not filled out any statutory advance directives but his oral advance directives were written in his chart and his family was aware of them. 146
WP had been cooperative with his medical team throughout his course. He told the ethics committee that he had confidence and faith in his providers. He had no complaints with his medical team, appreciated everything they had done for him, and did not want to be a bother. Although he still felt blood was appropriate for him, he did not want conflict with his providers. When asked by the ethics committee about blood products WP replied, “don’t you know the song ‘There Is Power in the Blood’ ”? When one of the committee members stated “that song goes, ‘there is power in the blood of the Lamb’ ”,4 WP made it clear he believed in the power of the Lamb’s blood and the power of the blood he was getting by transfusion. WP believed it was God’s will that he receive blood. Many considered WP’s quality of life to be poor. Intermittent episodes of bowel obstruction were decreasing his oral intake. His appetite had decreased. He was not receiving much nutrition because of poor oral intake and he had previously refused any form of medical nutrition. His pain was increasing. Weakness, lower extremity edema, and ascites were limiting his ability to perform activities of daily living and his family realized that he could no longer live alone. Despite his rapid physical decline, WP’s mental status remained stable and he still made his health care decisions. WP felt that his life had quality. He still valued life even in his present state of health. Although WP had periods of time at home, he spent more and more time in the hospital. WP knew that his life would end soon and he talked openly about death. WP continued to enjoy relationships with his family and health care providers. He continued to make family decisions and was still clearly respected for his wisdom and guidance. There were several contextual features to consider. WP did not have children but he did have nieces and nephews who were all close to him. They relied on him for wisdom and emotional support. In fact, WP had paid for college tuition for most of them. They considered him more a father than an uncle. They were supportive of his decisions and would fight to have his wishes honored. The hospital team had drawn close to WP over the course of his treatment. The primary physician was very close to WP and had been caring for him even before the diagnosis of gastric cancer. He appreciated how much WP loved life and said WP was “an inspiration” to him. WP’s primary hospital team provider stated she felt a spiritual connection to WP. She and WP shared a faith in God. She saw him as a father figure. She said for the last 2 years WP had been “like a father” to her. All health care providers who met WP appreciated his wit, intellect, and insight. The hospital team felt anguish over the continued use of blood not only because of risks to WP but also September 2001 Volume 322 Number 3
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because of resource allocation and questionable utility (futility) of these blood products. Because of their emotional attachment to WP, this anguish was even more intensified. In addition, several of the residents who would admit WP on ‘after hours’ tours of duty had begun to grumble about the futility of continuing to give WP blood when he was “terminal and had previously refused surgical resection.” The hospital team was struggling with withholding a treatment from a patient who wished it at a time when they were beginning to question the utility of this treatment. Once the ethics committee went to WP’s bedside and met him, their initial thoughts were changed. The committee began to reflect on whether continuing to give blood products was still capable of attaining the initial goal of relief of symptoms, pain, and suffering. Calling an intervention “futile” without identifying the goal to which one is referring risks causing confusion.5 Transfusion of blood could be successful in relieving symptoms and prolonging life but futile in curing the disease. WP’s symptoms had been improved and his life had been prolonged for almost 2 years now. It was felt that blood products were critical in meeting the patient’s preferences and maintaining his desired quality of life. It was also clear that he had deep religious beliefs that were the basis for his preferences. The committee recognized the fact that blood products might be viewed by some as comfort measures, others might see these same products as life-supporting treatment, and still others might view these products as both comfort and life support. Whatever the case, the goal of the treatment should be the critical element. At some point the risks of the transfusions might outweigh the benefits (ie, when a transfusion reaction was felt to be too life-threatening). In addition, the rate of bleeding might become so profuse that replacing blood products would be of no benefit. The committee suggested that the current prognosis and course of disease required that the health care team structure a new plan of care for WP. This plan needed to emphasize what would be done rather than what would not be done. The committee felt WP and his family needed to be informed that WP’s current signs and symptoms represented endstage disease. Positive aspects of care should be accentuated and care should be reviewed to see if other comfort measures could be added. If, as stated above, blood became inappropriate treatment, then WP should be assured that his team would continue their positive aspects of care. The plan of treatment should be prioritized and changed as WP’s needs changed. After the ethics consult, WP continued to receive comfort measures and lived about 3 more weeks. Blood products were not an issue beyond this point because his hematocrit stabilized. WP died of other complications of his disease. In his last conversation THE AMERICAN JOURNAL OF THE MEDICAL SCIENCES
with his health care team WP told them, “thank you for all you did for me.” Commentary That physicians are not obligated to provide futile or unreasonable life-supporting interventions— either voluntary or in response to patient or surrogate demands— has been argued in medical literature.6 This concept has also been endorsed in consensus statements by the American College of Chest Physicians (ACCP), the Society of Critical Care Medicine (SCCM), and the American Thoracic Society (ATS).7,8 This concept is also supported by compelling ethical principles.6 However, physicians know that denying a patient the option of life support on the basis of futility is not straightforward in current U.S. hospital practice.9 Moreover, the issue of physician refusal of requested care has not been resolved by case law or statute.6 Decisions about futile interventions should be made by the physician with the patient at the bedside. However, assurance of available ‘quality control’ methods is critical. To begin with, what does futility mean in the context of medical interventions? Schneiderman, Jecker, and Jonsen define a futile action as “one that cannot achieve the goals of the action, no matter how often repeated.” They said “when physicians conclude. . . that in the last 100 cases a medical treatment has been useless, they should regard that treatment as futile.” This is the quantitative aspect of futility. They also propose futility has a qualitative aspect with a futile treatment being one that “merely preserves permanent unconsciousness or that fails to end total dependence on intensive care medical care.”10 The distinction between quantitative and qualitative futility has been endorsed by other groups.11 Asserting that physicians decide what constitutes quantitative futility generates little controversy. However, the claim that physicians decide qualitative futility meets objections.12,13 As well, it is confusing to discuss futility as if it meant the same in every situation. Jonsen states “clear thinking about futility acknowledges the limits of clinical medicine”.14 The SCCM, in a consensus statement, reported that treatments should be defined as futile only when they will not accomplish their intended goals.15 The debate over the issue of medical futility continues. In the current climate of uncertainty regarding futility, it is imperative that physicians focus on their primary responsibility, which is to their individual patients. The concept of a physician as a fiduciary allows the physician to commit himself to the patient’s best interests and to retain a role in defining those interests. A fiduciary is an agent with specialized expertise who is entrusted with the affairs of another and who is expected to manage those affairs for the betterment of the client without re147
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gard to the fiduciary’s interests. The fiduciary is not only permitted but required to maintain an independent perspective on what the best interests of the patient are. This fiduciary trust provides a physician-patient relationship that supports shared decision-making and conflict resolution, accepts the patient’s right to refuse treatments, and permits the physician in certain circumstances to refuse patient demands for treatments.16,17 Ethical principles allow physicians (in a fiduciary role) to do what they consider best for patients, including, in the words of Hippocrates, not providing care for persons who are “overmastered by their diseases.”6 Tomlinson and Brody have asserted that only physicians are able to define reasonable medical practice. They say physicians have “moral authority which flows from the social concern with their professional rather than their personal or individual integrity.” This argument asserts physicians define what is reasonable because they are empowered to do so by society in exchange for meeting society’s medical needs.18 Schneiderman et al have stated that the power to make futility judgments is part of a physician’s duty of beneficence. They feel this power resides with the profession as a whole (establishing general standards of care) and abuses of this power are resolved by exercising judgment openly and responsibly according to professional standards.19 As members of a profession, physicians are expected to set high standards, hold patients’ interests in trust, and police themselves.6 Schneiderman and Manning, in discussing a standard of medical care (pertaining to the Baby K case) claim “if physicians take the position that certain treatments, no matter how avidly demanded, do not constitute acceptable practice, they should be willing to back their professional judgment with appropriate action” then be ready to defend these actions.20 Society, on the other hand, questions physicians’ moral authority, physicians’ willingness to treat all persons, and physicians’ professional self-regulation. This questioning of authority of physicians parallels a larger societal change in authority of any individual, whether that individual is a member of the clergy or the legal or medical professions.6 Truog et al assert that conflicts over treatments may require an explicit public process of social decisionmaking. However, this process would be difficult if not impossible in the current U.S. pluralistic society.21 Moreover, if society is unwilling to put these judgments in medical hands, why would they put them in judicial hands, hands with much less experience concerning such issues?22 In the face of social questioning of physicians’ medical decision making (pertaining to qualitative futility decisions), it is imperative that health care providers act appropriately in their fiduciary roles. Several steps should be regularly used to strengthen this fiduciary role. First, the physician must realize that the patient provides the primary and most 148
important source of information about his or her own interests. These interests must be important to the physician; however, to accept that the patient (or surrogate) defines these interests absolutely would be forsaking the physician’s fiduciary role.16 The physician must realize that the goal of treatments is to benefit the patient “as a whole.”10 As fiduciaries, physicians also have a responsibility to establish trust, to communicate, and to collaborate with patients and surrogates on health care issues.23 Physicians should focus on developing the virtues of justice, courage, honesty, and compassion in establishing trust.24,25 There are barriers to establishing this trust. For example, studies have shown that being a member of a minority group and having lower socioeconomic status are associated with less trust and with preferences for more aggressive (life support) care. In addition, historical events such as the Tuskegee medical experiments have eroded the public’s trust in medicine. Establishing trust is crucial to the fiduciary role of the physician. Communication with patients (and surrogates) is key to fiduciary responsibilities. Good communication is a prerequisite for responsible decision-making and for resolution of conflicts. Studies have shown positive associations between physician’s communication skills, verbal and nonverbal, and patient satisfaction. Communication skills include information-giving, discussions of preventive care, and (in end-of-life issues) giving probability of survival and post-treatment morbidity.15,25 Good communication assures patients that health care providers care about them and are dependable advocates for their well-being.25 The role of fiduciaries in preventing and correcting misconceptions cannot be overstated. There are already many misconceptions in public perception about medical interventions. Television is a major source of information and may be a source of misconception for members of society who rely on such information to guide their understanding of (lifesupporting) medical interventions.26,27 As well, families sometimes gain their medical “knowledge” from publications or the media, which at times report miraculous cures.28 Finally, physicians must address misconceptions when asked to “do everything.” Requests to “do everything” may be misguided efforts to express care for the patient when other manifestations of caring (such as comfort measures) would be more appropriate.19 Physicians must learn to distinguish (and help patients and surrogates distinguish) “everything that can be done” from “everything that should be done”.29 When fiduciaries discuss interventions with patients, discussions should focus on the goals of the intervention and should be understood by the patient and surrogates particularly when they are not for ‘curative’ ends. Explaining goals to patients can help identify unreSeptember 2001 Volume 322 Number 3
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alistic goals and help patients and families abandon unrealistic expectations.18 A very important responsibility of a fiduciary is to care. Caring goes beyond good intentions and kindness. Caring includes psychologic, philosophic, religious, and physical components. Caring takes into consideration the patient’s social context and specific goals (patient’s values).30 Caring should start at the beginning of the physician-patient relationship initially coexisting with the potential for ‘cure.’ When ‘cure’ is no longer possible, it is the physician’s ethical duty to redirect efforts from life-saving treatment to the pursuit of treatments that emphasize comfort and dignity. A patient for whom certain interventions are futile is not someone who is no longer worthy of medical attention.31 In fact, the fiduciary should be careful to not abandon the patient and must continue the caring process. Deciding when an individual intervention is futile can be difficult. Decisions about the utility (or futility) of interventions should be done at the bedside. For example, in WP’s case, using blood products seemed on paper a futile intervention to several people. However, at the bedside (in his individual clinical context), blood was not futile for the goal for which it was begun. Also, the fiduciary must never consider the patient futile. Futility should only refer to the intervention not accomplishing its goal.15 Perhaps the greatest concern opposing a fiduciary approach to deciding futility is the fear of erosion of patient autonomy.30 Certainly physicians, patients, surrogates, or other parties may view futility differently.6 And, in this highly individualistic American society, patient autonomy has dominated decisionmaking.32 Advocates for patient autonomy argue that a patient should be entitled to make all treatment decisions (especially at end of life). Advocates of patient autonomy also argue that patients are entitled to hopes (decision-making power) even when these hopes exceed the power of medicine. These advocates assert that medicine is duty-bound to serve these ‘hopes.’30 Certainly autonomy recognizes dangers in placing authority in the hands of the physician. First, physicians may make decisions on the basis of their own values, which may not coincide with the patient’s values. Also, discrimination against those with physical or mental disabilities, against racial minorities, or against those economically disadvantaged is a concern.33 Plus, there is fear that whether patients receive treatment depends upon who their physician happens to be, rather than on their medical state. Proponents of patient autonomy still contend that patient choice should guide medical decisions, whereas other proponents still hold that treatments may be withheld (or withdrawn) by the health care provider. For the concept of a fiduciary relationship of physician with patient to work ‘quality controls’ must be THE AMERICAN JOURNAL OF THE MEDICAL SCIENCES
present. These ‘quality control’ methods start at the bedside. Ideally, medical choices should represent acceptable consensus among physicians, patients, and surrogates about what treatment plan is reasonable and best suited to the individual patient.34 More than one physician (especially if one trusted by the family is present) involved in fiduciary decisions may be helpful. Also, multiple members of the health care team (nurses, social workers, chaplains) could be involved—particularly those with good communication skills.28 As stated earlier, misconceptions should be prevented or corrected. Patients and surrogates should be informed. Continuity of care (caring) must be a priority.16 Physicians must be aware of their own values and feelings while respecting the values and feelings of the patient and surrogates.35 Other ‘quality controls’ include availability of ethics consults, availability of negotiation by formal means, and policy formation. Legal settlement must be the resolution only when all bedside, ethical, multidisciplinary, policy-related, or institutional approaches have been exhausted.15 The concept of a physician as a fiduciary is, and should be, a great responsibility. Fiduciaries make important decisions for and with their patients. These decisions are tough, gut-wrenching, and anxiety-provoking.29 They should be. Medicine is a noble profession with a history of humanity. More evidence of nobility and humanity needs to exist.25 As fiduciary for the patient, the physician might do well to note, as Hippocrates stated, that the functions of medicine are “to relieve pain, to reduce the violence of disease, and to refrain from trying to cure those whom disease has conquered, acknowledging that in such cases medicine is powerless.”14 As fiduciaries, physicians must do everything that should be done. References 1. Jonsen AR, Siegler M, Winslade WJ. Clinical ethics. 4th ed. New York: McGraw-Hill, Inc; 1998. 2. Gore RM. Gastric cancer. Clinical and pathologic features. Radiol Clin North Am 1997;35:295–310. 3. McCullough P. Gastric cancer. Postgrad Med J 1996;72: 450 –7. 4. Jones LE. “There Is Power in the Blood.” In: Baptist Hymnal. Nashville (TN): Convention Press; 1975. 5. Youngner SL. Medical futility. Crit Care Clin 1996;12:165– 78. 6. Luce JM. Physicians do not have a responsibility to provide futile or unrealistic care if a patient or family insists. Crit Care Med 1995;23:760 – 6. 7. Anonymous. Ethical and moral guidelines for the initiation, continuation, and withdrawal of intensive care. American College of Chest Physicians/Society of Critical Care Medicine Consensus Panel. Chest 1990;97:949 – 61. 8. Anonymous. Withholding and withdrawing life-sustaining therapy. This Official Statement of the American Thoracic Society was adopted by the ATS Board of Directors, March 1991. Am Rev Respir Dis 1991;144:726 –31.
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9. Hansen-Flaschen JH. When life support is futile. Chest 1991;100:1191–2. 10. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990;112:949 –54. 11. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991;115:478 – 85. 12. Griener GG. The physician’s authority to withhold futile treatment. J Med Philos 1995;20:207–24. 13. Daar JF. Medical futility and implications for physician autonomy. Am J Law Med 1995;21:221– 40. 14. Jonsen AR. Intimations of futility. Am J Med 1994;96:107–9. 15. Anonymous. Consensus statement of the Society of Critical Care Medicine’s Ethics Committee regarding futile and other possibly inadvisable treatments. Crit Care Med 1997;25:887– 91. 16. Prendergrast TJ. Resolving conflicts surrounding end-oflife care. New Horizons 1997;5:62–71. 17. Sprung CL, Eidelman LA, Steinberg A. Is the physician’s duty to the individual patient or to society? Crit Care Med 1995;23:618 –20. 18. Tomlinson T, Brody H. Futility and the ethics of resuscitiation. JAMA 1990;264:1276 – 80. 19. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: responses to critiques. Ann Intern Med 1996;125:669 –74. 20. Schneiderman LJ, Manning S. The Baby K case: a search for the elusive standard of medical care. Camb Q Healthc Ethics, 1997;6:9 –18. 21. Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med 1992;326:1560 – 4. 22. Sprung CL, Eidelman LA. Judicial interventions in decision-making: a failure of the medical system? Crit Care Med 1996;24:730 –2.
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23. Youngner SJ. Medical Futility. Crit Care Clin 1996;12:165– 78. 24. Tong R. Towards a just, courageous, and honest resolution of the futility debate. J Med Philos 1995;20:165– 89. 25. Gilligan T, Raffin TA. Physician virtues and communication with patients. New Horizons 1997;5:6 –14. 26. Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med 1996;334:1578 – 82. 27. Bedell SE, Delbanco TL, Cook EF, et al. Survival after cardiopulmonary resuscitation in the hospital. N Engl J Med 1983;309:569 –76. 28. Civetta JM. Futile care or caregiver frustration? A practical approach. Crit Care Med 1996;24:346 –51. 29. Schuster DP. Everything that should be done—not everything that can be done. Am Rev Respir Dis 1992;145:508 –9. 30. Schneiderman LJ, Faber-Langendoen K, Jecker NS. Beyond futility to an ethic of care. Am J Med 1994;96: 110 – 4. 31. Halliday R. Medical futility and the social context. J Med Ethics 1997;23:148 –53. 32. Osborne M, Patterson J. Ethical allocation of ICU resources. A view from the USA. Intensive Care Med 1996;22: 1009 –14. 33. Kujdych N, Lowe DA, Sparks J, et al. Dignity or denial? Decisions regarding initiation of dialysis and medical therapy in the institutionalized severely mentally retarded. Am J Med Sci 2000;320:374 – 8. 34. Kopelman LM. Conceptual and moral disputes about futile and useful treatments. J Med Philos 1995;20:109 –21. 35. Dunn PM, Levinson W. Discussing futility with patients and families. J Gen Intern Med 1996;11:689 –93.
September 2001 Volume 322 Number 3
Case Studies in Ethics from the G.V. “Sonny” Montgomery VA Medical Center and the University of Mississippi Medical Center Editors Sharon P. Douglas, MD Errol D. Crook, MD
ecisions regarding utility of interventions near the end of life in terminally ill patients are sometimes difficult to make. In our current U.S. medical practice of advanced technology we are often left with the question “should we” when considering life-prolonging mechanisms. These decisions must be individualized at the bedside. The physician as fiduciary must make medical judgments about utility and respect patient values and preferences in making decisions. Also, it is imperative that the patient (and family) be properly informed of treatment goals and limitations. In this article, difficult decisions about utility of blood products in a patient with a terminal illness are discussed. The case is presented as an ethical dilemma that is analyzed by an orderly review of 4 topics (medical indications, patient preferences, quality of life, contextual features) as suggested by Jonsen, Siegler, and Winslade in Clinical Ethics.1 This 4-topic approach provides a systematic way to assist in identifying, analyzing, and resolving ethical problems. Case Presentation
“There Is Power in the Blood”: A Case Discussing Ethical Issues of Utility of Resources Authors Sharon P. Douglas, MD Errol D. Crook, MD Marti D. Reynolds, Mdiv Cheryl G. Robinson, FNP Kent A. Kirchner, MD
ABSTRACT: The allocation of medical resources is often a great concern in the United States. This article discusses a case concerning utility of resources in a patient with a terminal disease. We assert that the goals of treatment tailored to an individual patient should be made at the bedside by a fiduciary (physician) in conjunction with the patient’s preferences and values. There is great responsibility in making these decisions and it is critical that they be made at the bedside with the patient and family clearly aware of the goals of treatments and informed of treatment limitations. KEY INDEXING TERMS: Fiduciary; Blood products; Ethics; Futility. [Am J Med Sci 2001;322(3):145–150.]
From the G.V. “Sonny” Montgomery VA Medical Center, Jackson, Mississippi (SPD, EDC, MDR, CGR, KAK) and the University of Mississippi Medical Center, Jackson, Mississippi (SPD, EDC, KAK). The statements and opinions contained in this article are solely those of the individual authors and contributors and are not necessarily those of the editors, the Southern Society for Clinical Investigation, or Lippincott Williams & Wilkins, Inc. Correspondence: Sharon P. Douglas, M.D., G.V. “Sonny” Montgomery VA Medical Center, 1500 East Woodrow Wilson Drive, Jackson, MS 39216 (E-mail: [email protected]). THE AMERICAN JOURNAL OF THE MEDICAL SCIENCES
WP, a 91-year-old man, presented to the hospital approximately 3 years ago with complaints of weight loss and abdominal pain. Gastroscopy revealed adenocarcinoma of the stomach but there was no evidence of metastasis. His past medical history included only hypertension and he was thought to be a good surgical candidate. Surgical resection for potential cure was offered to him; however, he refused surgery and stated that he did not want any treatment for the cancer. He was discharged home to follow up with his primary care physician. Several months later WP developed anemia. His physician discussed the use of blood products. WP wanted transfusions of blood products as needed and his primary care physician felt this was appropriate treatment. However, the physician explained that blood products were a temporary treatment and would become useless at some point in the future. Over the next 2 years, WP required 54 transfusions of packed red blood cells; these transfusions became almost a weekly occurrence. At each transfusion, it became more and more difficult to match blood from donors because of antibodies. He had begun to experience transfusion reactions and intravenous access was becoming a problem. Both the gastroenterologist and the oncologist had recently re-evaluated WP’s condition. The gastroenterologist had done endoscopy again to see if endoscopic procedures could alleviate bleeding. He felt no such procedure could be performed. Also, embolization was not considered a treatment option. The oncologist felt palliative radiation at this point would not be helpful. The patient continued to refuse any form of chemotherapy. Both the gastroenterologist and the oncologist felt that current treatment options should consist of comfort measures. The hospital team that had taken care of WP on the last several admissions felt the risks of transfusions were beginning to outweigh the benefits. They cited difficult intravenous access and transfusion reactions as reasons for this concern. They also felt continuing to transfuse blood constituted a “perhaps futile” lifesupporting treatment being given in a terminal condition. WP felt his quality of life at home was good and the transfusions were important to continuing this quality of life. He did not feel that receiving blood products was excessive or unwarranted. He wanted his primary care physician’s opinion about blood products at this point; however, the primary physician felt he could not participate in this decision stating “I am too personally involved to make a recommendation by myself.” The hospital team felt apprehensive about WP’s course at this point and they were unclear about the boundaries for continued transfusion.
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They felt that continuing blood products was risky and perhaps futile treatment, yet they were struggling with withholding a treatment from a competent patient who wished it. They requested an ethics consult.
Case Analysis The ethics committee convened and heard the case. Before going to the bedside, several committee members discussed the situation as a clear case of a futile life-supporting intervention and an inappropriate use of resources. The committee also consulted with an outside ethicist by phone. This consultant referred to use of blood products as “bad medicine” and an example of “pouring blood down the drain.” The recommendation at this point seemed clear to the committee. However, as mentioned above, an orderly review of the medical indications, patient preferences, quality of life, and contextual features is a systematic method to identify, analyze, and resolve ethical problems.1 This case was evaluated in that manner. In considering the medical indications, it is known that without early diagnosis and complete surgical resection, the prognosis of gastric carcinoma remains poor.2,3 WP had refused surgery when it could have provided a possible cure; therefore, his prognosis and overall condition were poor. The goals of therapy to that point had been focused on comfort measures. At the time of current hospitalization, WP’s condition had greatly worsened. He had lower extremity edema, cachexia, ascites, and intermittent bowel obstruction. However, he was still achieving clinical relief from the transfusions. Blood transfusions were required more frequently to relieve the patient’s symptoms. With increasing problems with transfusions and with intravenous access, there was concern that WP was reaching a point at which the medical risks of transfusions were beginning to outweigh their medical benefits. The patient was able to make his preferences clear. At 91, he was still quite “sharp.” He had decision-making capacity, made his own decisions, and had a good understanding of his choices. Although he seemed to understand that surgery was his only chance of cure, it was his preference not to have surgery. He stated God told him surgery was not best for him. WP did accept comfort measures offered, which, to him, included blood. He felt blood improved his symptoms, allowed him to return to his daily routine, and was not “heroic.” He was clear on what he would not accept. He would not accept any surgery, chemotherapy, or radiation. He did not want to be placed on a mechanical ventilator and he did not want cardiopulmonary resuscitation. He also had consistently stated that he did not want medically provided nutrition. He had not filled out any statutory advance directives but his oral advance directives were written in his chart and his family was aware of them. 146
WP had been cooperative with his medical team throughout his course. He told the ethics committee that he had confidence and faith in his providers. He had no complaints with his medical team, appreciated everything they had done for him, and did not want to be a bother. Although he still felt blood was appropriate for him, he did not want conflict with his providers. When asked by the ethics committee about blood products WP replied, “don’t you know the song ‘There Is Power in the Blood’ ”? When one of the committee members stated “that song goes, ‘there is power in the blood of the Lamb’ ”,4 WP made it clear he believed in the power of the Lamb’s blood and the power of the blood he was getting by transfusion. WP believed it was God’s will that he receive blood. Many considered WP’s quality of life to be poor. Intermittent episodes of bowel obstruction were decreasing his oral intake. His appetite had decreased. He was not receiving much nutrition because of poor oral intake and he had previously refused any form of medical nutrition. His pain was increasing. Weakness, lower extremity edema, and ascites were limiting his ability to perform activities of daily living and his family realized that he could no longer live alone. Despite his rapid physical decline, WP’s mental status remained stable and he still made his health care decisions. WP felt that his life had quality. He still valued life even in his present state of health. Although WP had periods of time at home, he spent more and more time in the hospital. WP knew that his life would end soon and he talked openly about death. WP continued to enjoy relationships with his family and health care providers. He continued to make family decisions and was still clearly respected for his wisdom and guidance. There were several contextual features to consider. WP did not have children but he did have nieces and nephews who were all close to him. They relied on him for wisdom and emotional support. In fact, WP had paid for college tuition for most of them. They considered him more a father than an uncle. They were supportive of his decisions and would fight to have his wishes honored. The hospital team had drawn close to WP over the course of his treatment. The primary physician was very close to WP and had been caring for him even before the diagnosis of gastric cancer. He appreciated how much WP loved life and said WP was “an inspiration” to him. WP’s primary hospital team provider stated she felt a spiritual connection to WP. She and WP shared a faith in God. She saw him as a father figure. She said for the last 2 years WP had been “like a father” to her. All health care providers who met WP appreciated his wit, intellect, and insight. The hospital team felt anguish over the continued use of blood not only because of risks to WP but also September 2001 Volume 322 Number 3
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because of resource allocation and questionable utility (futility) of these blood products. Because of their emotional attachment to WP, this anguish was even more intensified. In addition, several of the residents who would admit WP on ‘after hours’ tours of duty had begun to grumble about the futility of continuing to give WP blood when he was “terminal and had previously refused surgical resection.” The hospital team was struggling with withholding a treatment from a patient who wished it at a time when they were beginning to question the utility of this treatment. Once the ethics committee went to WP’s bedside and met him, their initial thoughts were changed. The committee began to reflect on whether continuing to give blood products was still capable of attaining the initial goal of relief of symptoms, pain, and suffering. Calling an intervention “futile” without identifying the goal to which one is referring risks causing confusion.5 Transfusion of blood could be successful in relieving symptoms and prolonging life but futile in curing the disease. WP’s symptoms had been improved and his life had been prolonged for almost 2 years now. It was felt that blood products were critical in meeting the patient’s preferences and maintaining his desired quality of life. It was also clear that he had deep religious beliefs that were the basis for his preferences. The committee recognized the fact that blood products might be viewed by some as comfort measures, others might see these same products as life-supporting treatment, and still others might view these products as both comfort and life support. Whatever the case, the goal of the treatment should be the critical element. At some point the risks of the transfusions might outweigh the benefits (ie, when a transfusion reaction was felt to be too life-threatening). In addition, the rate of bleeding might become so profuse that replacing blood products would be of no benefit. The committee suggested that the current prognosis and course of disease required that the health care team structure a new plan of care for WP. This plan needed to emphasize what would be done rather than what would not be done. The committee felt WP and his family needed to be informed that WP’s current signs and symptoms represented endstage disease. Positive aspects of care should be accentuated and care should be reviewed to see if other comfort measures could be added. If, as stated above, blood became inappropriate treatment, then WP should be assured that his team would continue their positive aspects of care. The plan of treatment should be prioritized and changed as WP’s needs changed. After the ethics consult, WP continued to receive comfort measures and lived about 3 more weeks. Blood products were not an issue beyond this point because his hematocrit stabilized. WP died of other complications of his disease. In his last conversation THE AMERICAN JOURNAL OF THE MEDICAL SCIENCES
with his health care team WP told them, “thank you for all you did for me.” Commentary That physicians are not obligated to provide futile or unreasonable life-supporting interventions— either voluntary or in response to patient or surrogate demands— has been argued in medical literature.6 This concept has also been endorsed in consensus statements by the American College of Chest Physicians (ACCP), the Society of Critical Care Medicine (SCCM), and the American Thoracic Society (ATS).7,8 This concept is also supported by compelling ethical principles.6 However, physicians know that denying a patient the option of life support on the basis of futility is not straightforward in current U.S. hospital practice.9 Moreover, the issue of physician refusal of requested care has not been resolved by case law or statute.6 Decisions about futile interventions should be made by the physician with the patient at the bedside. However, assurance of available ‘quality control’ methods is critical. To begin with, what does futility mean in the context of medical interventions? Schneiderman, Jecker, and Jonsen define a futile action as “one that cannot achieve the goals of the action, no matter how often repeated.” They said “when physicians conclude. . . that in the last 100 cases a medical treatment has been useless, they should regard that treatment as futile.” This is the quantitative aspect of futility. They also propose futility has a qualitative aspect with a futile treatment being one that “merely preserves permanent unconsciousness or that fails to end total dependence on intensive care medical care.”10 The distinction between quantitative and qualitative futility has been endorsed by other groups.11 Asserting that physicians decide what constitutes quantitative futility generates little controversy. However, the claim that physicians decide qualitative futility meets objections.12,13 As well, it is confusing to discuss futility as if it meant the same in every situation. Jonsen states “clear thinking about futility acknowledges the limits of clinical medicine”.14 The SCCM, in a consensus statement, reported that treatments should be defined as futile only when they will not accomplish their intended goals.15 The debate over the issue of medical futility continues. In the current climate of uncertainty regarding futility, it is imperative that physicians focus on their primary responsibility, which is to their individual patients. The concept of a physician as a fiduciary allows the physician to commit himself to the patient’s best interests and to retain a role in defining those interests. A fiduciary is an agent with specialized expertise who is entrusted with the affairs of another and who is expected to manage those affairs for the betterment of the client without re147
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gard to the fiduciary’s interests. The fiduciary is not only permitted but required to maintain an independent perspective on what the best interests of the patient are. This fiduciary trust provides a physician-patient relationship that supports shared decision-making and conflict resolution, accepts the patient’s right to refuse treatments, and permits the physician in certain circumstances to refuse patient demands for treatments.16,17 Ethical principles allow physicians (in a fiduciary role) to do what they consider best for patients, including, in the words of Hippocrates, not providing care for persons who are “overmastered by their diseases.”6 Tomlinson and Brody have asserted that only physicians are able to define reasonable medical practice. They say physicians have “moral authority which flows from the social concern with their professional rather than their personal or individual integrity.” This argument asserts physicians define what is reasonable because they are empowered to do so by society in exchange for meeting society’s medical needs.18 Schneiderman et al have stated that the power to make futility judgments is part of a physician’s duty of beneficence. They feel this power resides with the profession as a whole (establishing general standards of care) and abuses of this power are resolved by exercising judgment openly and responsibly according to professional standards.19 As members of a profession, physicians are expected to set high standards, hold patients’ interests in trust, and police themselves.6 Schneiderman and Manning, in discussing a standard of medical care (pertaining to the Baby K case) claim “if physicians take the position that certain treatments, no matter how avidly demanded, do not constitute acceptable practice, they should be willing to back their professional judgment with appropriate action” then be ready to defend these actions.20 Society, on the other hand, questions physicians’ moral authority, physicians’ willingness to treat all persons, and physicians’ professional self-regulation. This questioning of authority of physicians parallels a larger societal change in authority of any individual, whether that individual is a member of the clergy or the legal or medical professions.6 Truog et al assert that conflicts over treatments may require an explicit public process of social decisionmaking. However, this process would be difficult if not impossible in the current U.S. pluralistic society.21 Moreover, if society is unwilling to put these judgments in medical hands, why would they put them in judicial hands, hands with much less experience concerning such issues?22 In the face of social questioning of physicians’ medical decision making (pertaining to qualitative futility decisions), it is imperative that health care providers act appropriately in their fiduciary roles. Several steps should be regularly used to strengthen this fiduciary role. First, the physician must realize that the patient provides the primary and most 148
important source of information about his or her own interests. These interests must be important to the physician; however, to accept that the patient (or surrogate) defines these interests absolutely would be forsaking the physician’s fiduciary role.16 The physician must realize that the goal of treatments is to benefit the patient “as a whole.”10 As fiduciaries, physicians also have a responsibility to establish trust, to communicate, and to collaborate with patients and surrogates on health care issues.23 Physicians should focus on developing the virtues of justice, courage, honesty, and compassion in establishing trust.24,25 There are barriers to establishing this trust. For example, studies have shown that being a member of a minority group and having lower socioeconomic status are associated with less trust and with preferences for more aggressive (life support) care. In addition, historical events such as the Tuskegee medical experiments have eroded the public’s trust in medicine. Establishing trust is crucial to the fiduciary role of the physician. Communication with patients (and surrogates) is key to fiduciary responsibilities. Good communication is a prerequisite for responsible decision-making and for resolution of conflicts. Studies have shown positive associations between physician’s communication skills, verbal and nonverbal, and patient satisfaction. Communication skills include information-giving, discussions of preventive care, and (in end-of-life issues) giving probability of survival and post-treatment morbidity.15,25 Good communication assures patients that health care providers care about them and are dependable advocates for their well-being.25 The role of fiduciaries in preventing and correcting misconceptions cannot be overstated. There are already many misconceptions in public perception about medical interventions. Television is a major source of information and may be a source of misconception for members of society who rely on such information to guide their understanding of (lifesupporting) medical interventions.26,27 As well, families sometimes gain their medical “knowledge” from publications or the media, which at times report miraculous cures.28 Finally, physicians must address misconceptions when asked to “do everything.” Requests to “do everything” may be misguided efforts to express care for the patient when other manifestations of caring (such as comfort measures) would be more appropriate.19 Physicians must learn to distinguish (and help patients and surrogates distinguish) “everything that can be done” from “everything that should be done”.29 When fiduciaries discuss interventions with patients, discussions should focus on the goals of the intervention and should be understood by the patient and surrogates particularly when they are not for ‘curative’ ends. Explaining goals to patients can help identify unreSeptember 2001 Volume 322 Number 3
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alistic goals and help patients and families abandon unrealistic expectations.18 A very important responsibility of a fiduciary is to care. Caring goes beyond good intentions and kindness. Caring includes psychologic, philosophic, religious, and physical components. Caring takes into consideration the patient’s social context and specific goals (patient’s values).30 Caring should start at the beginning of the physician-patient relationship initially coexisting with the potential for ‘cure.’ When ‘cure’ is no longer possible, it is the physician’s ethical duty to redirect efforts from life-saving treatment to the pursuit of treatments that emphasize comfort and dignity. A patient for whom certain interventions are futile is not someone who is no longer worthy of medical attention.31 In fact, the fiduciary should be careful to not abandon the patient and must continue the caring process. Deciding when an individual intervention is futile can be difficult. Decisions about the utility (or futility) of interventions should be done at the bedside. For example, in WP’s case, using blood products seemed on paper a futile intervention to several people. However, at the bedside (in his individual clinical context), blood was not futile for the goal for which it was begun. Also, the fiduciary must never consider the patient futile. Futility should only refer to the intervention not accomplishing its goal.15 Perhaps the greatest concern opposing a fiduciary approach to deciding futility is the fear of erosion of patient autonomy.30 Certainly physicians, patients, surrogates, or other parties may view futility differently.6 And, in this highly individualistic American society, patient autonomy has dominated decisionmaking.32 Advocates for patient autonomy argue that a patient should be entitled to make all treatment decisions (especially at end of life). Advocates of patient autonomy also argue that patients are entitled to hopes (decision-making power) even when these hopes exceed the power of medicine. These advocates assert that medicine is duty-bound to serve these ‘hopes.’30 Certainly autonomy recognizes dangers in placing authority in the hands of the physician. First, physicians may make decisions on the basis of their own values, which may not coincide with the patient’s values. Also, discrimination against those with physical or mental disabilities, against racial minorities, or against those economically disadvantaged is a concern.33 Plus, there is fear that whether patients receive treatment depends upon who their physician happens to be, rather than on their medical state. Proponents of patient autonomy still contend that patient choice should guide medical decisions, whereas other proponents still hold that treatments may be withheld (or withdrawn) by the health care provider. For the concept of a fiduciary relationship of physician with patient to work ‘quality controls’ must be THE AMERICAN JOURNAL OF THE MEDICAL SCIENCES
present. These ‘quality control’ methods start at the bedside. Ideally, medical choices should represent acceptable consensus among physicians, patients, and surrogates about what treatment plan is reasonable and best suited to the individual patient.34 More than one physician (especially if one trusted by the family is present) involved in fiduciary decisions may be helpful. Also, multiple members of the health care team (nurses, social workers, chaplains) could be involved—particularly those with good communication skills.28 As stated earlier, misconceptions should be prevented or corrected. Patients and surrogates should be informed. Continuity of care (caring) must be a priority.16 Physicians must be aware of their own values and feelings while respecting the values and feelings of the patient and surrogates.35 Other ‘quality controls’ include availability of ethics consults, availability of negotiation by formal means, and policy formation. Legal settlement must be the resolution only when all bedside, ethical, multidisciplinary, policy-related, or institutional approaches have been exhausted.15 The concept of a physician as a fiduciary is, and should be, a great responsibility. Fiduciaries make important decisions for and with their patients. These decisions are tough, gut-wrenching, and anxiety-provoking.29 They should be. Medicine is a noble profession with a history of humanity. More evidence of nobility and humanity needs to exist.25 As fiduciary for the patient, the physician might do well to note, as Hippocrates stated, that the functions of medicine are “to relieve pain, to reduce the violence of disease, and to refrain from trying to cure those whom disease has conquered, acknowledging that in such cases medicine is powerless.”14 As fiduciaries, physicians must do everything that should be done. References 1. Jonsen AR, Siegler M, Winslade WJ. Clinical ethics. 4th ed. New York: McGraw-Hill, Inc; 1998. 2. Gore RM. Gastric cancer. Clinical and pathologic features. Radiol Clin North Am 1997;35:295–310. 3. McCullough P. Gastric cancer. Postgrad Med J 1996;72: 450 –7. 4. Jones LE. “There Is Power in the Blood.” In: Baptist Hymnal. Nashville (TN): Convention Press; 1975. 5. Youngner SL. Medical futility. Crit Care Clin 1996;12:165– 78. 6. Luce JM. Physicians do not have a responsibility to provide futile or unrealistic care if a patient or family insists. Crit Care Med 1995;23:760 – 6. 7. Anonymous. Ethical and moral guidelines for the initiation, continuation, and withdrawal of intensive care. American College of Chest Physicians/Society of Critical Care Medicine Consensus Panel. Chest 1990;97:949 – 61. 8. Anonymous. Withholding and withdrawing life-sustaining therapy. This Official Statement of the American Thoracic Society was adopted by the ATS Board of Directors, March 1991. Am Rev Respir Dis 1991;144:726 –31.
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9. Hansen-Flaschen JH. When life support is futile. Chest 1991;100:1191–2. 10. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990;112:949 –54. 11. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991;115:478 – 85. 12. Griener GG. The physician’s authority to withhold futile treatment. J Med Philos 1995;20:207–24. 13. Daar JF. Medical futility and implications for physician autonomy. Am J Law Med 1995;21:221– 40. 14. Jonsen AR. Intimations of futility. Am J Med 1994;96:107–9. 15. Anonymous. Consensus statement of the Society of Critical Care Medicine’s Ethics Committee regarding futile and other possibly inadvisable treatments. Crit Care Med 1997;25:887– 91. 16. Prendergrast TJ. Resolving conflicts surrounding end-oflife care. New Horizons 1997;5:62–71. 17. Sprung CL, Eidelman LA, Steinberg A. Is the physician’s duty to the individual patient or to society? Crit Care Med 1995;23:618 –20. 18. Tomlinson T, Brody H. Futility and the ethics of resuscitiation. JAMA 1990;264:1276 – 80. 19. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: responses to critiques. Ann Intern Med 1996;125:669 –74. 20. Schneiderman LJ, Manning S. The Baby K case: a search for the elusive standard of medical care. Camb Q Healthc Ethics, 1997;6:9 –18. 21. Truog RD, Brett AS, Frader J. The problem with futility. N Engl J Med 1992;326:1560 – 4. 22. Sprung CL, Eidelman LA. Judicial interventions in decision-making: a failure of the medical system? Crit Care Med 1996;24:730 –2.
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23. Youngner SJ. Medical Futility. Crit Care Clin 1996;12:165– 78. 24. Tong R. Towards a just, courageous, and honest resolution of the futility debate. J Med Philos 1995;20:165– 89. 25. Gilligan T, Raffin TA. Physician virtues and communication with patients. New Horizons 1997;5:6 –14. 26. Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med 1996;334:1578 – 82. 27. Bedell SE, Delbanco TL, Cook EF, et al. Survival after cardiopulmonary resuscitation in the hospital. N Engl J Med 1983;309:569 –76. 28. Civetta JM. Futile care or caregiver frustration? A practical approach. Crit Care Med 1996;24:346 –51. 29. Schuster DP. Everything that should be done—not everything that can be done. Am Rev Respir Dis 1992;145:508 –9. 30. Schneiderman LJ, Faber-Langendoen K, Jecker NS. Beyond futility to an ethic of care. Am J Med 1994;96: 110 – 4. 31. Halliday R. Medical futility and the social context. J Med Ethics 1997;23:148 –53. 32. Osborne M, Patterson J. Ethical allocation of ICU resources. A view from the USA. Intensive Care Med 1996;22: 1009 –14. 33. Kujdych N, Lowe DA, Sparks J, et al. Dignity or denial? Decisions regarding initiation of dialysis and medical therapy in the institutionalized severely mentally retarded. Am J Med Sci 2000;320:374 – 8. 34. Kopelman LM. Conceptual and moral disputes about futile and useful treatments. J Med Philos 1995;20:109 –21. 35. Dunn PM, Levinson W. Discussing futility with patients and families. J Gen Intern Med 1996;11:689 –93.
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