SCFENTWK PAPERS _J__-.-_--._-~
Advance Directives, Proxies, and the Practice of Surgery Lynn M. Peterson,
‘IJw Patient Self-Determination
Act, in effect since December 1991 , promises to have a major impact on the practice of surgery. Advance directives will often allow surgery but prohibit the use of resuscitation, ventilators, and artificial feeding. If, however., such interventions are called for as part of an oper,ation or standard postoperative care, should they be utilized despite the prior directive? This article examines this question by reviewing typical surgical cases illustrating the distinction between terminal and advanced illness, the extent of a surgical consent, and differences between proxies and advance directives.
MD, Boston, Massachusetts
The ethical practice of surgery requires a patient’s I voluntary, informed consent. In some istances, however, direct consent is impossible, and surgeons seek permission from surrogates or guidance from written, advance directives. This creates difficulties because it requires understanding a person’s wishes through a previous declaration or through another person. Indeed, since the Patient Self-Determination Act, which requires all Medicare-reimbursed institutions (1) to have an advance directive and (2) to ask patients on admission if they have prepared an advance directive [I], took effect in December 199 1, these difficulties have become more common. Internists, family practitioners, geriatricians, and other nonsurgical specialists become involved in helping patients issue advance directives or delegate proxies. Surgeons, on the other hand, become involved in putting them into effect. Precisely how to act on the basis of an advance directive or proxy may, however, not be straightforward. Changes in the patient’s wishes, deterioration of the patient-proxy relationship, and emergence of new treatment alternatives are obvious factors making these directives difficult to interpret. In addition, there are subtle variations that surgeons must think about, including the distinction between terminal and nonterminal illness, the extent of a consent to surgery, the importance of the circumstances of an advance directive, and the assessment of pain and the quality of life. Each of these crucial issues must be examined without capriciousness and with the intention of ensuring that the patient’s “subjective” values are being followed. This creates the need to collaborate with other caregivers, scrutinize the patient’s wishes, seek second opinions, and think of new ways to provide adequate documentation. Indeed, putting an advance directive or proxy into effect will require a more explicitly patient-oriented standard of care. Before examining problems raised by typical surgical cases, two items need to be reviewed: the reason why advance directives are so important to patients and the medical profession’s stance on limiting care. THE IMPORTANCE OF ADVANCE DIRECTIVES The courts: A number of cases acted on in the state
From t.he Division of Medical Ethics and Department of Surgery, Harvarcj Medical School, Boston, Massaclmsctts. Requests for reprints should be addrcwd to Lynn M. Peterson, MD, Division of Medical Ethics, Harvard niedical School, 641 Huntington Avenue, Boeton, Massachusetts 02115. Manuscript submitted July 25, 1991, and accepted in revised form October 16, 1991.
courts have achieved extensive notoriety; examples include Quinlan, Candura, Brophy, Saikewicz, and Spring. State court decisions have held that it is legal (ethically proper) to withdraw virtually any life-prolonging or lifesaving treatment [2]. In addition, the courts have declared that there is no morally significant difference between withdrawing or withholding treatment [3]. The medical profession has traditionally condoned withholding treatment in some circumstances but has been more
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divided regarding withdrawal of treatment in the same situations [4]. Thus, treatments such as mechanical ventilation, chemotherapy, and nutrition and hydration can be just as easily (ethically) withheld or withdrawn whenever such action is in accord with the patient’s wishes. And, finally, the patient’s wishes may be expressed by an advance directive document, proxy, or substituted judgment. The recent Supreme Court action in the Cruzan case received enormous publicity and has had widespread influence [S]. Here the Court affirmed that patients have a right to refuse (any) treatment even when the refusal leads directly to death. The Court found this right embodied in the United States Constitution. In addition, the Supreme Court found that Missouri’s requirement for “clear and convincing evidence” of the patient’s wishes was not unconstitutional. The Supreme Court delegated the determination of whether the clear and convincing criteria had been met to the local jurisdiction or state court. This proved to be a major stumbling block for the Cruzans. There was little explicit, documented evidence regarding Nancy Cruzan’s wishes concerning what she wanted if she were to enter a persistent vegetative state. In the Cruzan case, the Missouri courts eventually found that there was clear and convincing evidence that Nancy Cruzan would not want to be kept alive under the circumstances. This allowed the hospital and her care providers to follow Nancy’s wishes as expressed by her parents and stop administering food and fluids. Nancy died shortly thereafter. The public attention given the Cruzan case, and especially the enormous legal battles, has led many Americans to establish clear and convincing evidence about their wishes. People fear that well-intentioned medical care may be used in circumstances they want to avoid. Indeed, the fear generated by legal battles strikes twice. People know that physicians and hospitals have a much greater risk of legal entanglement if they do anything that even slightly deviates from a narrowly defined (biologic) standard of care, i.e., one that preserves life at all costs, regardless of its quality. Therefore, to avoid courtroom battles, patients and families desperately want to document their preferences. Patient and public attitudes: Surveys indicate that people feel strongly about controlling their medical care even after they become mentally incapacitated. One recent survey found that 93% of patients in an outpatient setting and 89% of people chosen randomly and interviewed by telephone want to determine the extent of their medical care if they became incapacitated [q . Surveys of hospitalized patients have found similar results. The majority of people, whether in or out of the hospital, want to determine the kind, extent, and duration of their care. In a landmark study, Bedell and Delbanco [7] found that 25% of the survivors of resuscitation retrospectively wished that they had not been resuscitated. While the reasons for their individual preferences were not given, factors such as diminished quality of life, persistent suffering, and the trauma of the resuscitation were presumably influential. In addition, these investigators found 278
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that the patients’ physicians thought: (1) that the disappointed survivors actually wanted the resuscitation and (2) that they knew what the patients wanted. This empirical evidence challenged previous assumptions. It was assumed that survival after cardiac arrest meant “success.” To find that patients failed to believe that survival equaled success, in this most intuitively obvious example, meant it was difficult to know what patients actually wanted without direct discussion. Subsequent prospective studies [8] have confirmed Bedell and Delban& findings: patients do not always want life-saving treatment, and physicians are not always as aware of patients’ desires as they may think. In addition to the epidemiologic data, reports of personal experiences reveal similar phenomena. In response to “It’s Over, Debbie,” an alleged account of a physician’s mercy killing, nonprofessionals wrote letters strongly endorsing the doctor’s action [9]. Also, two prominent physicians recently described in vivid detail the medical care given their own family members immediately preceding death. In both instances, the physicians delivering care failed to respond to the patient’s and family’s wishes. In one case, vigorous treatment prolonged the life of an elderly, vegetative parent [IO], while in the other, radiotherapy for brain metastases from lung cancer was recommended without discussion of alternatives [l I 1. These physicians ended up disappointed and frustrated. These general attitudes and individual experiences reflect a tendency in medical care rather than serving as rare examples of unusual behavior. Contemporary patients want to determine their care, and contemporary practice sometimes fails to provide, albeit usually unintentionally, dignified care respecting patients’ wishes. THE MEDICAL PROFESSION’S
STANCE
The Hippocratic oath forbids killing: I will neither give a deadly drug to anybody who has asked for it nor will I make a suggestion to this effect [ 121.
And a 1973 statement by the American Medical Association (AMA) reiterates this position: The intentional termination of the life of one human being by another-mercy killing-is contrary to that for which the medical profession stands and is contrary to the policy of the AMA [13]. Physicians argue that, as physicians, they must never kill. There is no room in medicine for a “pluralistic or relativistic” ethic [14]. Life has absolute value, and physicians cannot simply follow preferences expressed by patients or families. The active euthanasia provided by Dutch physicians and that provided by Dr. Kevorkian’s
suicide machine do not fit acceptable standards of medical practice; they are ethically wrong. On the other hand, recent AMA opinions indicate that it can be appropriate to withdraw-i.e., cease to prolong-care in cases of terminal illness: For humane reasons, with informed consent, a physician may do what is medicaily necessary to alleviate severe pain, or cease or omit treatment to permit a terminally ill patient to die when death is imminent. . . . Even if death is not imminent but a patient is beyond
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doubt permanently unconscious , . . it is not unethical to discontinue all means of lifsprolonging medical treatment
[151. Thus, killing is absolutely forbidden, while withholding and withdrawing treatment may be appropriate in some circumstances. The distinction, however, between unacceptable acts of killing or active euthanasia and acceptable ones (withholding or withdrawing treatment) becomes complicated by a physician’s prior duty to relieve suffering. Combining the duty to avoid killing with the duty to relieve suffering creates a dilemma. Whether there is an actual “doing” or a passive observing, something happens for which the physician may be responsible. Failing to act (i.e., relieve) may be as morally reproachable as acting. One way to distinguish between the acceptable and unacceptable varieties of allowing patients to die depends on knowing the patient’s voluntary wishes and the physician’s intentions [16]. When patients voluntarily choose to forgo some medical treatment, it is appropriate to withhold or withdraw it. Also, when a physician administers a morphine drip for the purpose (intention) of relieving suffering, it may be acceptable even though the indirect effect of the morphine is to shorten life. This simple, two-variable scheme points to two crucial issues: the patient’s wishes and the goals or intentions of the medical care. However, a number of issues still need clarification. The type of treatment (antibiotics versus ventilator), the degree of suffering (excruciating pain versus a vegetative state), the kind and phase of the illness, the degree of imminence of death, the certainty regarding the diagnosis, and the certainty about the patient’s wishes are major factors to consider, and they must be delineated in order to understand the goals of care. This complexity precludes a simple rule. Rather, multiple variables interact, creating a range of cases between unacceptable killing and acceptable ceasing to prolong life [16]. Thus, the medical professional values life highly but accepts practices that shorten life as long as these practices fulfill a more important goal determined by the patient’s wishes. The following surgical cases demonstrate how the variables of treatment, quality of life, illness, and imminence of death interact with the patients’ wishes as expressed by advance directive documents or proxies. They show how important it is for the surgeon to carefully interpret the patient’s directive in light of complex illness and treatment variables. SAMPLE PROBLEMS Advance directivewith a living will document:Re-
fusing a specific treatment.A 78-year-old frail nursing home resident issued an advance directive while competent proscribing “artificial feeding.” Over the next 12 months, she became progressively more senile. Just prior to an operation for perforated diverticulitis, she no longer responded coherently although she still fed herself. Her operation involved resection, Hartmann closure, and colostomy. Initial recovery went well, but, on the fifth postoperative day, she refused to drink or eat and became THE AMERICAN
uncooperative. She had no living relatives. The advance directive had been witnessed by a nurse and issued in response to observing a fellow nursing home resident receive gastrostomy feeding. To the patient, this seemed undignified, producing an existence she wanted to avoid. Inserting a feeding tube or central line at this time is important (in her “best interest”), because it improves the chances of recovery from surgery. As her recovery progresses and her strength and ileus improve, she will presumably no longer require “artificial feeding.” On the other hand, this is a treatment she specifically refused. In addition, her current poor quality of life (totally unable to interact meaningfully with others) means that tube feeding will produce an existence she wanted to avoid. Furthermore, a feeding device carries some hazard, and it is possible, although unlikely, that her ability to eat will return spontaneously. A short period of “artificial feeding” can be justified as long as its purpose is to aid recovery from surgery. If, after 1 to 2 weeks of tube feeding, there is no improvement, then removing the tube in order to follow her advance directive would be justified. This strategy combines helping recovery from surgery with the goal of following her directive. The injluence of suffering (quality of life) on interpreting an advancedirective.Comparing two cases helps illustrate this problem. First, a man underwent a left colectomy at age 72 for a Dukes’ C2 colon cancer. Several years previously, he had issued an advance directive prohibiting resuscitation and mechanical ventilation, which he specifically brought to his surgeon’s attention. During the operation, he received 8 liters of fluid. On the third postoperative day, he developed increasing shortness of breath and signs of acute pulmonary edema. He soon became tired and incoherent. It is highly likely that his pulmonary congestion was a result of mobilizing fluid given during surgery. Other possible diagnoses include pulmonary embolus and myocardial infarction, both also potentially reversible. In any case, intubation and ventilatory assistance for a short time would probably relieve the acute problem. Following the advance directive could lead to an avoidable or premature death. In this setting, his pulmonary congestion may be regarded as “artificial” as opposed to “natural,” since it was caused by the technology used to perform the operation rather than from a natural decline in the physiologic status. Indeed, it is at least possible that if the patient were intubated and ventilated, an action contrary to his expressed wishes, he would be grateful when he left the hospital. Another man underwent surgery for locally advanced colon cancer at age 65. He had peritoneal carcinomatosis with encirclement and obstruction of several loops of small intestine. The obstruction could not be corrected or bypassed. He therefore had irremediable cancer producing painful intestinal obstruction. The patient also enacted an advance directive indicating that he did not want to be resuscitated or ventilated. Like the previous patient, he received a large amount of fluid intraoperatively, and, on the fourth postoperative day, he developed pulmonary congestion and acute respiratory distress. He also became
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exhausted and incoherent. In this case, it makes sense to follow the advance directive and not intubate him. Oxygen, morphine, diuretics, and other measures can be used to treat the pulmonary congestion. But intubation and ventilation, while helpful to reverse an acute condition, still leave him with a terminal, irremediable, and painful illness. Intervening in a way contrary to this patient’s wishes prolongs his suffering. Advance directives with a proxy: Refusing a specific treatment.An 83-year-old woman underwent a colectomy for obstructing Crohn’s disease. Complications led to further surgery and the need for a proximal ileostomy, producing large volumes of enteric output. Despite drinking an enormous amount of fluid, she was unable to keep up with the ileostomy output and required daily intravenous fluids to avoid dehydration and somnolence. A neurologic disease, beginning 2 to 3 years prior to the surgery, had produced major short-term memory loss. At the time of surgery, she was unable to participate in decisionmaking, although she participated in self-care, ambulated, and had good control of her bladder and bowel. Eighteen months prior to this hospitalization, her 45-year-old daughter had been appointed her legal guardian. The patient’s daughter managed her financial affairs and arranged for in-home, around-the-clock care. Although the daughter lived across the country, she visited her mother monthly and during this hospitalization spent several weeks with the patient and seemed sincerely concerned about the patient’s recovery. In discussions around consent for surgery, the daughter always had her mother’s wishes in mind. When it came time for discharge from the hospital, the daughter said the patient had told her previously she did not want to be kept alive on “tubes.” This topic came up because the patient’s mother had also suffered from colitis and died while being maintained with “tubes.” Therefore, the daughter’s home care arrangements did not include parenteral fluids even though this could be done. Thii meant the patient would probably become dehydrated, somnolent, and die. The daughter believed that this was consistent with the patient’s wishes. While the patient did not have a strictly “terminal” disease, her neurologic condition was making her increasingly more incapacitated. She was unable to recognize the doctors or nurses who cared for her nor could she remember recent events. Nevertheless, she understood simple requests and agreed completely with her daughter’s plan. Following the daughter’s plan in this case, while difficult, makes sense because it allows the patient to remain at home, with constant care and without the tubes she thought were demeaning. An operation changes the proxy’s directive.An 87year-old man had a chronic subphrenic abscess that failed to respond to percutaneous drainage and antibiotics. Continued episodes of sepsis indicated the need for an operation. His wife and children had previously requested a do-not-resuscitate order; they were concerned that the patient’s suffering not be prolonged by “artificial means.” They specifically did not want the patient put on a ventilator. They agreed, however, to an operation since they realized his unresolved infection produced an unsatisfac280
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tory quality of life. The patient had significant pulmonary and cardiac disease. In this setting, especially with the debility brought on by chronic infection, mechanical ventilation following surgery would be “standard care.” In addition, his high anesthesia risk meant that intraoperative resuscitation would be more than a remote possibility. But mechanical ventilation and resuscitation were inconsistent with the advance directive issued by the patient’s wife and children. While intraoperative resuscitation would not ordinarily be discussed preoperatively, in this case it was. The family was told that resuscitation during operation would be a part of the operation; it would not be painful, since the patient would be unconscious and its duration would be limited. Second, the use of a ventilator postoperatively also received consent. In this case, the use of the ventilator is part of postoperative care rather than an “extraordinary” or “artificial” means to survive a “natural” disaster. A time liiit of 1 week was suggested as consistent with a maximal effort at postoperative ventilation. If the need for a ventilator lasted for more than 1 week, then it would be prolonging suffering rather than aiding recovery and survival. The family consented to resuscitation and ventilation in this situation since it was completely different than a situation without the operation. The patient was on a ventilator for 2 days after his operation and was discharged 2 weeks later.
COMMENTS These four problems arose in the process of trying to follow patients’ wishes as expressed by advance directives while maintaining a high degree of respect for human life. They are not rare events, and they are likely to become more common as more patients establish clear and convincing evidence of their wishes. These examples illustrate the kind of clinical challenge that the Patient SelfDetermination Act has created for surgeons. The public and individual attention this matter receives reflects its enormous importance. People want to avoid the humiliation of an undignified existence as much as the agony of an isolated, lonely illness with no one to comfort or care for them. Contrary to the opinion of some authors [14], medicine’s ethic does need to be relative to patients’ deeply held values and pluralistic in the sense of having the capacity to accommodate a range of individual preferences. This relativism and pluralism, however, need to avoid the hazards of following ill-considered or spurious wishes and erroneous beliefs. Accomplishing this latter task underscores the importance of the initial transaotion when a proxy or an advance directive is established. Programs for eliciting patient’s wishes vary. Some authors believe it best to have a general indication of preference, e.g., avoid being kept alive by artificial means [ 171, while others believe it is better to describe a series of specific situations and treatments and ask people to choose which treatment they want in which situation [18]. The latter approach is more specific regarding a patient’s wishes. Which approach is better remains to be determined. Regardless of the approach, however, it is obvious these declarations should be taken seriously and interpreted in light of the clinical circumstances.
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The above examples illustrate how surgeons must try to understand previously declared wishes when circumstances change. An operation may be perfectly acceptable as a means of relieving suffering as in the case of, for example, peritonitis, intestinal obstruction, or unrelenting sepsis, but undertaking surgery may entail the use of treatments that are otherwise prohibited. Administering nutrition and fluids, resuscitation, and mechanical ventilation take on an entirely new meaning in the context of an operation. Here they become necessary in order to accomplish an intermediate goal as opposed to being used in a context where the goal may excessively prolong suffering. The goal, the intention or purpose of the treatment, is of utmost importance. A treatment may be acceptable when used to achieve the patient’s defined goal but harmful when interfering with that objective. This consideration draws attention to an extremely important component of the proxy or advance directive. These directives are a means of allowing people to express their individual identity (autonomy) at the time of a critical illness. As such, they represent a way for people to reflect their most cherished beliefs and values, a way to indicate who they are, how they want to be regarded, and perhaps even indicate the community with which they identify. A strictly literal or abstract interpretation of the patient’s intentions is unsatisfactory. One needs to know why the choice was made, whether it was because of consequences similar to those currently existing; one also needs to know something about the person involved. Declaring a proxy or an advance directive is a value-laden enterprise. As such, it is impossible to understand it in a completely objective sense; rather, it needs to be interpreted and understood in a given context. The actions chosen in the above cases may seem noncontroversial. Some surgeons may even believe that elab orate discussion is unnecessary. But others will find reasons for the opposite choices. This shows the need for discussion, giving reasons pro and con, in these kinds of issues. These arguments need to include facts about the illness and possible treatment as well as facts about the patient and the advance directive. Despite the need for argument and the possibility of differences of opinion, mistakes can be made as reflected in Feinstein’s [IO] and Cranford’s [I 11 narratives. Providing surgical care congruent with human goals requires that the arguments take place, reasons be examined, and controversy enjoined. Failing to fully recognize controversy and the process needed for making these kinds of
decisions has been an underappreciated aspect of formal medical training. Surgical conferences, like morbidity and mortality rounds, should regularly consider debates on cases like this in detail. These problems are different from wound infections, postoperative pneumonia, and urinary retention, but they are factual, practical, no less susceptible to repeatable errors, and no less important. By having debates, surgical practices will be more capable of accommodating patients’ wishes to the fullest extent possible.
REFERENCES 1. Omnibus Reconciliation Act 1990. Title IV. Section 4206. Congressional Record. October 26, 1990: 12638. 2. Emanuel EJ. A review of the ethical and legal aspects of terminating medical care. Am J Med 1988; 84: 291-301. 3. Brophy v. New England Sinai Hospital, Inc., 398 Mass, 417, 497, N.E. 2nd 626 (1986). 4. Brock DW. Death and dying. In: Veatch RW, editor. Medical ethics. Boston: Jones & Bartlett, 1989. 5. Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841 (1990). 6. Emanuel LL, Barry MJ, Stceckle JD, Ettleson LM, Emanuel EJ. Advance directives for medical care-a case for greater use. N Engl J Med 1991: 324: 889-95. 7. Bedell SE, Delbanco TL. Choices about cardiopulmonary resuscitation in the hospital: when do physicians talk with patients? N Engl J Med 1984; 310: 1089-93. 8. Frank K, Oye RK, Bellamy PE. Attitudes of hospitalized patients toward life support: a survey of 200 medical inpatients. Am J Med 1989; 86: 645-8. 9. It’s over, Debbie. JAMA 1988; 259: 272. 10. Feinstein A. The state of the art. JAMA 1986; 55: 14. 11. Cranford RE. Going out in style, the American way, 1987. Law, Medicine and Health Care, 1989; 17: 208-10. 12. Edelstein L. The Hippocratic oath. In: Beachamp TL, Childress JF, editors. Principles of biomedical ethics. New York: Oxford University Press, 1979: 280- 1. 13. Statement AMA House of Delegates, December 4, 1973. In: Rachels J, editor. Active and passive euthanasia. N Engl J Med 1975; 292: 78-80. 14. Gaylen W, Kass LR, Pellegrino ED, Siegler M. ‘Doctors must not kill.’ JAMA 1988; 259: 2139-40. 15. Current opinions of the Council on Ethical and Judicial Affairs of the American Medical Association 1989. Chicago: American Medical Association, 1989; Section 2.20. 16. Lundberg GD. “It’s over, Debbie” and the euthanasia debate. JAMA 1988; 259: 2142-3. 17. Bass AN. Euthanasia to date. Vassar Quarterly 1975; 72. 18. Emanuel LL, Emanuel EJ. The medical directive: a new comprehensive advance care document. JAMA 1989; 261: 3288-93.
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Advance Directives, Proxies, and the Practice of Surgery Lynn M. Peterson,
‘IJw Patient Self-Determination
Act, in effect since December 1991 , promises to have a major impact on the practice of surgery. Advance directives will often allow surgery but prohibit the use of resuscitation, ventilators, and artificial feeding. If, however., such interventions are called for as part of an oper,ation or standard postoperative care, should they be utilized despite the prior directive? This article examines this question by reviewing typical surgical cases illustrating the distinction between terminal and advanced illness, the extent of a surgical consent, and differences between proxies and advance directives.
MD, Boston, Massachusetts
The ethical practice of surgery requires a patient’s I voluntary, informed consent. In some istances, however, direct consent is impossible, and surgeons seek permission from surrogates or guidance from written, advance directives. This creates difficulties because it requires understanding a person’s wishes through a previous declaration or through another person. Indeed, since the Patient Self-Determination Act, which requires all Medicare-reimbursed institutions (1) to have an advance directive and (2) to ask patients on admission if they have prepared an advance directive [I], took effect in December 199 1, these difficulties have become more common. Internists, family practitioners, geriatricians, and other nonsurgical specialists become involved in helping patients issue advance directives or delegate proxies. Surgeons, on the other hand, become involved in putting them into effect. Precisely how to act on the basis of an advance directive or proxy may, however, not be straightforward. Changes in the patient’s wishes, deterioration of the patient-proxy relationship, and emergence of new treatment alternatives are obvious factors making these directives difficult to interpret. In addition, there are subtle variations that surgeons must think about, including the distinction between terminal and nonterminal illness, the extent of a consent to surgery, the importance of the circumstances of an advance directive, and the assessment of pain and the quality of life. Each of these crucial issues must be examined without capriciousness and with the intention of ensuring that the patient’s “subjective” values are being followed. This creates the need to collaborate with other caregivers, scrutinize the patient’s wishes, seek second opinions, and think of new ways to provide adequate documentation. Indeed, putting an advance directive or proxy into effect will require a more explicitly patient-oriented standard of care. Before examining problems raised by typical surgical cases, two items need to be reviewed: the reason why advance directives are so important to patients and the medical profession’s stance on limiting care. THE IMPORTANCE OF ADVANCE DIRECTIVES The courts: A number of cases acted on in the state
From t.he Division of Medical Ethics and Department of Surgery, Harvarcj Medical School, Boston, Massaclmsctts. Requests for reprints should be addrcwd to Lynn M. Peterson, MD, Division of Medical Ethics, Harvard niedical School, 641 Huntington Avenue, Boeton, Massachusetts 02115. Manuscript submitted July 25, 1991, and accepted in revised form October 16, 1991.
courts have achieved extensive notoriety; examples include Quinlan, Candura, Brophy, Saikewicz, and Spring. State court decisions have held that it is legal (ethically proper) to withdraw virtually any life-prolonging or lifesaving treatment [2]. In addition, the courts have declared that there is no morally significant difference between withdrawing or withholding treatment [3]. The medical profession has traditionally condoned withholding treatment in some circumstances but has been more
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divided regarding withdrawal of treatment in the same situations [4]. Thus, treatments such as mechanical ventilation, chemotherapy, and nutrition and hydration can be just as easily (ethically) withheld or withdrawn whenever such action is in accord with the patient’s wishes. And, finally, the patient’s wishes may be expressed by an advance directive document, proxy, or substituted judgment. The recent Supreme Court action in the Cruzan case received enormous publicity and has had widespread influence [S]. Here the Court affirmed that patients have a right to refuse (any) treatment even when the refusal leads directly to death. The Court found this right embodied in the United States Constitution. In addition, the Supreme Court found that Missouri’s requirement for “clear and convincing evidence” of the patient’s wishes was not unconstitutional. The Supreme Court delegated the determination of whether the clear and convincing criteria had been met to the local jurisdiction or state court. This proved to be a major stumbling block for the Cruzans. There was little explicit, documented evidence regarding Nancy Cruzan’s wishes concerning what she wanted if she were to enter a persistent vegetative state. In the Cruzan case, the Missouri courts eventually found that there was clear and convincing evidence that Nancy Cruzan would not want to be kept alive under the circumstances. This allowed the hospital and her care providers to follow Nancy’s wishes as expressed by her parents and stop administering food and fluids. Nancy died shortly thereafter. The public attention given the Cruzan case, and especially the enormous legal battles, has led many Americans to establish clear and convincing evidence about their wishes. People fear that well-intentioned medical care may be used in circumstances they want to avoid. Indeed, the fear generated by legal battles strikes twice. People know that physicians and hospitals have a much greater risk of legal entanglement if they do anything that even slightly deviates from a narrowly defined (biologic) standard of care, i.e., one that preserves life at all costs, regardless of its quality. Therefore, to avoid courtroom battles, patients and families desperately want to document their preferences. Patient and public attitudes: Surveys indicate that people feel strongly about controlling their medical care even after they become mentally incapacitated. One recent survey found that 93% of patients in an outpatient setting and 89% of people chosen randomly and interviewed by telephone want to determine the extent of their medical care if they became incapacitated [q . Surveys of hospitalized patients have found similar results. The majority of people, whether in or out of the hospital, want to determine the kind, extent, and duration of their care. In a landmark study, Bedell and Delbanco [7] found that 25% of the survivors of resuscitation retrospectively wished that they had not been resuscitated. While the reasons for their individual preferences were not given, factors such as diminished quality of life, persistent suffering, and the trauma of the resuscitation were presumably influential. In addition, these investigators found 278
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that the patients’ physicians thought: (1) that the disappointed survivors actually wanted the resuscitation and (2) that they knew what the patients wanted. This empirical evidence challenged previous assumptions. It was assumed that survival after cardiac arrest meant “success.” To find that patients failed to believe that survival equaled success, in this most intuitively obvious example, meant it was difficult to know what patients actually wanted without direct discussion. Subsequent prospective studies [8] have confirmed Bedell and Delban& findings: patients do not always want life-saving treatment, and physicians are not always as aware of patients’ desires as they may think. In addition to the epidemiologic data, reports of personal experiences reveal similar phenomena. In response to “It’s Over, Debbie,” an alleged account of a physician’s mercy killing, nonprofessionals wrote letters strongly endorsing the doctor’s action [9]. Also, two prominent physicians recently described in vivid detail the medical care given their own family members immediately preceding death. In both instances, the physicians delivering care failed to respond to the patient’s and family’s wishes. In one case, vigorous treatment prolonged the life of an elderly, vegetative parent [IO], while in the other, radiotherapy for brain metastases from lung cancer was recommended without discussion of alternatives [l I 1. These physicians ended up disappointed and frustrated. These general attitudes and individual experiences reflect a tendency in medical care rather than serving as rare examples of unusual behavior. Contemporary patients want to determine their care, and contemporary practice sometimes fails to provide, albeit usually unintentionally, dignified care respecting patients’ wishes. THE MEDICAL PROFESSION’S
STANCE
The Hippocratic oath forbids killing: I will neither give a deadly drug to anybody who has asked for it nor will I make a suggestion to this effect [ 121.
And a 1973 statement by the American Medical Association (AMA) reiterates this position: The intentional termination of the life of one human being by another-mercy killing-is contrary to that for which the medical profession stands and is contrary to the policy of the AMA [13]. Physicians argue that, as physicians, they must never kill. There is no room in medicine for a “pluralistic or relativistic” ethic [14]. Life has absolute value, and physicians cannot simply follow preferences expressed by patients or families. The active euthanasia provided by Dutch physicians and that provided by Dr. Kevorkian’s
suicide machine do not fit acceptable standards of medical practice; they are ethically wrong. On the other hand, recent AMA opinions indicate that it can be appropriate to withdraw-i.e., cease to prolong-care in cases of terminal illness: For humane reasons, with informed consent, a physician may do what is medicaily necessary to alleviate severe pain, or cease or omit treatment to permit a terminally ill patient to die when death is imminent. . . . Even if death is not imminent but a patient is beyond
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doubt permanently unconscious , . . it is not unethical to discontinue all means of lifsprolonging medical treatment
[151. Thus, killing is absolutely forbidden, while withholding and withdrawing treatment may be appropriate in some circumstances. The distinction, however, between unacceptable acts of killing or active euthanasia and acceptable ones (withholding or withdrawing treatment) becomes complicated by a physician’s prior duty to relieve suffering. Combining the duty to avoid killing with the duty to relieve suffering creates a dilemma. Whether there is an actual “doing” or a passive observing, something happens for which the physician may be responsible. Failing to act (i.e., relieve) may be as morally reproachable as acting. One way to distinguish between the acceptable and unacceptable varieties of allowing patients to die depends on knowing the patient’s voluntary wishes and the physician’s intentions [16]. When patients voluntarily choose to forgo some medical treatment, it is appropriate to withhold or withdraw it. Also, when a physician administers a morphine drip for the purpose (intention) of relieving suffering, it may be acceptable even though the indirect effect of the morphine is to shorten life. This simple, two-variable scheme points to two crucial issues: the patient’s wishes and the goals or intentions of the medical care. However, a number of issues still need clarification. The type of treatment (antibiotics versus ventilator), the degree of suffering (excruciating pain versus a vegetative state), the kind and phase of the illness, the degree of imminence of death, the certainty regarding the diagnosis, and the certainty about the patient’s wishes are major factors to consider, and they must be delineated in order to understand the goals of care. This complexity precludes a simple rule. Rather, multiple variables interact, creating a range of cases between unacceptable killing and acceptable ceasing to prolong life [16]. Thus, the medical professional values life highly but accepts practices that shorten life as long as these practices fulfill a more important goal determined by the patient’s wishes. The following surgical cases demonstrate how the variables of treatment, quality of life, illness, and imminence of death interact with the patients’ wishes as expressed by advance directive documents or proxies. They show how important it is for the surgeon to carefully interpret the patient’s directive in light of complex illness and treatment variables. SAMPLE PROBLEMS Advance directivewith a living will document:Re-
fusing a specific treatment.A 78-year-old frail nursing home resident issued an advance directive while competent proscribing “artificial feeding.” Over the next 12 months, she became progressively more senile. Just prior to an operation for perforated diverticulitis, she no longer responded coherently although she still fed herself. Her operation involved resection, Hartmann closure, and colostomy. Initial recovery went well, but, on the fifth postoperative day, she refused to drink or eat and became THE AMERICAN
uncooperative. She had no living relatives. The advance directive had been witnessed by a nurse and issued in response to observing a fellow nursing home resident receive gastrostomy feeding. To the patient, this seemed undignified, producing an existence she wanted to avoid. Inserting a feeding tube or central line at this time is important (in her “best interest”), because it improves the chances of recovery from surgery. As her recovery progresses and her strength and ileus improve, she will presumably no longer require “artificial feeding.” On the other hand, this is a treatment she specifically refused. In addition, her current poor quality of life (totally unable to interact meaningfully with others) means that tube feeding will produce an existence she wanted to avoid. Furthermore, a feeding device carries some hazard, and it is possible, although unlikely, that her ability to eat will return spontaneously. A short period of “artificial feeding” can be justified as long as its purpose is to aid recovery from surgery. If, after 1 to 2 weeks of tube feeding, there is no improvement, then removing the tube in order to follow her advance directive would be justified. This strategy combines helping recovery from surgery with the goal of following her directive. The injluence of suffering (quality of life) on interpreting an advancedirective.Comparing two cases helps illustrate this problem. First, a man underwent a left colectomy at age 72 for a Dukes’ C2 colon cancer. Several years previously, he had issued an advance directive prohibiting resuscitation and mechanical ventilation, which he specifically brought to his surgeon’s attention. During the operation, he received 8 liters of fluid. On the third postoperative day, he developed increasing shortness of breath and signs of acute pulmonary edema. He soon became tired and incoherent. It is highly likely that his pulmonary congestion was a result of mobilizing fluid given during surgery. Other possible diagnoses include pulmonary embolus and myocardial infarction, both also potentially reversible. In any case, intubation and ventilatory assistance for a short time would probably relieve the acute problem. Following the advance directive could lead to an avoidable or premature death. In this setting, his pulmonary congestion may be regarded as “artificial” as opposed to “natural,” since it was caused by the technology used to perform the operation rather than from a natural decline in the physiologic status. Indeed, it is at least possible that if the patient were intubated and ventilated, an action contrary to his expressed wishes, he would be grateful when he left the hospital. Another man underwent surgery for locally advanced colon cancer at age 65. He had peritoneal carcinomatosis with encirclement and obstruction of several loops of small intestine. The obstruction could not be corrected or bypassed. He therefore had irremediable cancer producing painful intestinal obstruction. The patient also enacted an advance directive indicating that he did not want to be resuscitated or ventilated. Like the previous patient, he received a large amount of fluid intraoperatively, and, on the fourth postoperative day, he developed pulmonary congestion and acute respiratory distress. He also became
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exhausted and incoherent. In this case, it makes sense to follow the advance directive and not intubate him. Oxygen, morphine, diuretics, and other measures can be used to treat the pulmonary congestion. But intubation and ventilation, while helpful to reverse an acute condition, still leave him with a terminal, irremediable, and painful illness. Intervening in a way contrary to this patient’s wishes prolongs his suffering. Advance directives with a proxy: Refusing a specific treatment.An 83-year-old woman underwent a colectomy for obstructing Crohn’s disease. Complications led to further surgery and the need for a proximal ileostomy, producing large volumes of enteric output. Despite drinking an enormous amount of fluid, she was unable to keep up with the ileostomy output and required daily intravenous fluids to avoid dehydration and somnolence. A neurologic disease, beginning 2 to 3 years prior to the surgery, had produced major short-term memory loss. At the time of surgery, she was unable to participate in decisionmaking, although she participated in self-care, ambulated, and had good control of her bladder and bowel. Eighteen months prior to this hospitalization, her 45-year-old daughter had been appointed her legal guardian. The patient’s daughter managed her financial affairs and arranged for in-home, around-the-clock care. Although the daughter lived across the country, she visited her mother monthly and during this hospitalization spent several weeks with the patient and seemed sincerely concerned about the patient’s recovery. In discussions around consent for surgery, the daughter always had her mother’s wishes in mind. When it came time for discharge from the hospital, the daughter said the patient had told her previously she did not want to be kept alive on “tubes.” This topic came up because the patient’s mother had also suffered from colitis and died while being maintained with “tubes.” Therefore, the daughter’s home care arrangements did not include parenteral fluids even though this could be done. Thii meant the patient would probably become dehydrated, somnolent, and die. The daughter believed that this was consistent with the patient’s wishes. While the patient did not have a strictly “terminal” disease, her neurologic condition was making her increasingly more incapacitated. She was unable to recognize the doctors or nurses who cared for her nor could she remember recent events. Nevertheless, she understood simple requests and agreed completely with her daughter’s plan. Following the daughter’s plan in this case, while difficult, makes sense because it allows the patient to remain at home, with constant care and without the tubes she thought were demeaning. An operation changes the proxy’s directive.An 87year-old man had a chronic subphrenic abscess that failed to respond to percutaneous drainage and antibiotics. Continued episodes of sepsis indicated the need for an operation. His wife and children had previously requested a do-not-resuscitate order; they were concerned that the patient’s suffering not be prolonged by “artificial means.” They specifically did not want the patient put on a ventilator. They agreed, however, to an operation since they realized his unresolved infection produced an unsatisfac280
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tory quality of life. The patient had significant pulmonary and cardiac disease. In this setting, especially with the debility brought on by chronic infection, mechanical ventilation following surgery would be “standard care.” In addition, his high anesthesia risk meant that intraoperative resuscitation would be more than a remote possibility. But mechanical ventilation and resuscitation were inconsistent with the advance directive issued by the patient’s wife and children. While intraoperative resuscitation would not ordinarily be discussed preoperatively, in this case it was. The family was told that resuscitation during operation would be a part of the operation; it would not be painful, since the patient would be unconscious and its duration would be limited. Second, the use of a ventilator postoperatively also received consent. In this case, the use of the ventilator is part of postoperative care rather than an “extraordinary” or “artificial” means to survive a “natural” disaster. A time liiit of 1 week was suggested as consistent with a maximal effort at postoperative ventilation. If the need for a ventilator lasted for more than 1 week, then it would be prolonging suffering rather than aiding recovery and survival. The family consented to resuscitation and ventilation in this situation since it was completely different than a situation without the operation. The patient was on a ventilator for 2 days after his operation and was discharged 2 weeks later.
COMMENTS These four problems arose in the process of trying to follow patients’ wishes as expressed by advance directives while maintaining a high degree of respect for human life. They are not rare events, and they are likely to become more common as more patients establish clear and convincing evidence of their wishes. These examples illustrate the kind of clinical challenge that the Patient SelfDetermination Act has created for surgeons. The public and individual attention this matter receives reflects its enormous importance. People want to avoid the humiliation of an undignified existence as much as the agony of an isolated, lonely illness with no one to comfort or care for them. Contrary to the opinion of some authors [14], medicine’s ethic does need to be relative to patients’ deeply held values and pluralistic in the sense of having the capacity to accommodate a range of individual preferences. This relativism and pluralism, however, need to avoid the hazards of following ill-considered or spurious wishes and erroneous beliefs. Accomplishing this latter task underscores the importance of the initial transaotion when a proxy or an advance directive is established. Programs for eliciting patient’s wishes vary. Some authors believe it best to have a general indication of preference, e.g., avoid being kept alive by artificial means [ 171, while others believe it is better to describe a series of specific situations and treatments and ask people to choose which treatment they want in which situation [18]. The latter approach is more specific regarding a patient’s wishes. Which approach is better remains to be determined. Regardless of the approach, however, it is obvious these declarations should be taken seriously and interpreted in light of the clinical circumstances.
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The above examples illustrate how surgeons must try to understand previously declared wishes when circumstances change. An operation may be perfectly acceptable as a means of relieving suffering as in the case of, for example, peritonitis, intestinal obstruction, or unrelenting sepsis, but undertaking surgery may entail the use of treatments that are otherwise prohibited. Administering nutrition and fluids, resuscitation, and mechanical ventilation take on an entirely new meaning in the context of an operation. Here they become necessary in order to accomplish an intermediate goal as opposed to being used in a context where the goal may excessively prolong suffering. The goal, the intention or purpose of the treatment, is of utmost importance. A treatment may be acceptable when used to achieve the patient’s defined goal but harmful when interfering with that objective. This consideration draws attention to an extremely important component of the proxy or advance directive. These directives are a means of allowing people to express their individual identity (autonomy) at the time of a critical illness. As such, they represent a way for people to reflect their most cherished beliefs and values, a way to indicate who they are, how they want to be regarded, and perhaps even indicate the community with which they identify. A strictly literal or abstract interpretation of the patient’s intentions is unsatisfactory. One needs to know why the choice was made, whether it was because of consequences similar to those currently existing; one also needs to know something about the person involved. Declaring a proxy or an advance directive is a value-laden enterprise. As such, it is impossible to understand it in a completely objective sense; rather, it needs to be interpreted and understood in a given context. The actions chosen in the above cases may seem noncontroversial. Some surgeons may even believe that elab orate discussion is unnecessary. But others will find reasons for the opposite choices. This shows the need for discussion, giving reasons pro and con, in these kinds of issues. These arguments need to include facts about the illness and possible treatment as well as facts about the patient and the advance directive. Despite the need for argument and the possibility of differences of opinion, mistakes can be made as reflected in Feinstein’s [IO] and Cranford’s [I 11 narratives. Providing surgical care congruent with human goals requires that the arguments take place, reasons be examined, and controversy enjoined. Failing to fully recognize controversy and the process needed for making these kinds of
decisions has been an underappreciated aspect of formal medical training. Surgical conferences, like morbidity and mortality rounds, should regularly consider debates on cases like this in detail. These problems are different from wound infections, postoperative pneumonia, and urinary retention, but they are factual, practical, no less susceptible to repeatable errors, and no less important. By having debates, surgical practices will be more capable of accommodating patients’ wishes to the fullest extent possible.
REFERENCES 1. Omnibus Reconciliation Act 1990. Title IV. Section 4206. Congressional Record. October 26, 1990: 12638. 2. Emanuel EJ. A review of the ethical and legal aspects of terminating medical care. Am J Med 1988; 84: 291-301. 3. Brophy v. New England Sinai Hospital, Inc., 398 Mass, 417, 497, N.E. 2nd 626 (1986). 4. Brock DW. Death and dying. In: Veatch RW, editor. Medical ethics. Boston: Jones & Bartlett, 1989. 5. Cruzan v. Director, Missouri Dept. of Health, 110 S.Ct. 2841 (1990). 6. Emanuel LL, Barry MJ, Stceckle JD, Ettleson LM, Emanuel EJ. Advance directives for medical care-a case for greater use. N Engl J Med 1991: 324: 889-95. 7. Bedell SE, Delbanco TL. Choices about cardiopulmonary resuscitation in the hospital: when do physicians talk with patients? N Engl J Med 1984; 310: 1089-93. 8. Frank K, Oye RK, Bellamy PE. Attitudes of hospitalized patients toward life support: a survey of 200 medical inpatients. Am J Med 1989; 86: 645-8. 9. It’s over, Debbie. JAMA 1988; 259: 272. 10. Feinstein A. The state of the art. JAMA 1986; 55: 14. 11. Cranford RE. Going out in style, the American way, 1987. Law, Medicine and Health Care, 1989; 17: 208-10. 12. Edelstein L. The Hippocratic oath. In: Beachamp TL, Childress JF, editors. Principles of biomedical ethics. New York: Oxford University Press, 1979: 280- 1. 13. Statement AMA House of Delegates, December 4, 1973. In: Rachels J, editor. Active and passive euthanasia. N Engl J Med 1975; 292: 78-80. 14. Gaylen W, Kass LR, Pellegrino ED, Siegler M. ‘Doctors must not kill.’ JAMA 1988; 259: 2139-40. 15. Current opinions of the Council on Ethical and Judicial Affairs of the American Medical Association 1989. Chicago: American Medical Association, 1989; Section 2.20. 16. Lundberg GD. “It’s over, Debbie” and the euthanasia debate. JAMA 1988; 259: 2142-3. 17. Bass AN. Euthanasia to date. Vassar Quarterly 1975; 72. 18. Emanuel LL, Emanuel EJ. The medical directive: a new comprehensive advance care document. JAMA 1989; 261: 3288-93.
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