Decision Making by Cardiac Patients: Implications for Risk Management Regis A. DeSilva,
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Social and cultural changes and media scrutiny have led to increased public awareness of the patient’s role in medical care. Decisions are no longer directed by physicians alone and are affected by several nonmedical factors. In the current environment, physicians must respond actively to how patients perceive their care and how they make decisions about themselves to aid in risk management. Patients and families with high-risk profiles for litigation have been identified, and it is important to be aware of these subsets. Gender differences and patients’ hidden histories can affect their decision
making and relationships with physicians. Mistaken concepts about medical care, patients’ beliefs in alternative medical treatments, and patients’ magical beliefs must also be considered in assessing communication with patients and their families, and are useful in constructing a risk-management strategy. Factors contributing to malpractice suits and a proposed risk-reduction protocol that physicians can follow to decrease legal risk are also discussed. Q1999 by Excerpta Medica, Inc. Am J Cardiol 1999;83:10B–14B
he United States is a highly consumer-aware society, and patients are becoming increasingly better T informed about aspects of their medical care. In an era
cost while simultaneously decreasing exposure to legal liability. In part because of the above social and cultural changes, several studies have undertaken to examine critically methods of clinical decision making. However, most of these studies have focused on issues such as informed consent, end-of-life situations, and models for clinical decision making.2,4,5 These studies, useful as they are, do not address fundamental social and psychologic processes that influence decision making by individual patients and their families. In the current climate, it is necessary to pay attention not only to how clinical professionals make decisions, but also to how patients make personal decisions about their health care. In dealing with acute cardiovascular problems, the specialist must meet several demanding requirements with severe time limitations. Rapid decisions are required with regard to diagnosis, invasive testing, and treatment. Patients expect not only an extraordinarily high standard of professional conduct but also very precise and carefully targeted treatment within a short timeframe. Furthermore, the margins for diagnostic and therapeutic error are often very narrow. Compounding the problem is the limited time available for communication with patients and their families, especially in rapidly developing situations. Time constraints notwithstanding, the importance of communicating fully with a patient’s family cannot be overemphasized, since this will greatly enhance the physician’s credibility and decrease misunderstandings and hostility if there is a mishap. This article deals with identification of subgroups of patients and families who may pose problems in terms of risk management, the decision-making strategies employed by individuals and certain patient groups, and a suggested protocol for risk reduction.
of increased disclosure and access to information, expectations of public accountability, and intense media scrutiny, traditional relationships between patients and doctors have become greatly modified. Besides, people in the United States historically have always had a strong sense of personal choice in making decisions about themselves. In recent years, physician dominance in decision making has also been curtailed by advocates for patients’ rights who seek greater patient control over healthcare decisions.1 Emanuel and Emanuel2 discuss 4 models of decision making with varying degrees of input and decision making by the patient and the physician (Table I). In the present sociocultural environment, the paternalistic model, although most convenient for physicians, is outmoded and is probably the least favored by patients. However, the advent of managed care has made patient-directed decision-making more difficult. It has also made the public somewhat uncertain that there is candid disclosure about medical treatments and their alternatives. Concomitant with these factors is the documentation of the surprisingly high rates of error, accidental injury, and death in hospitalized patients.3 To compound these problems, the physician is faced with the beˆte noire of cost containment in the setting of increased surveillance and regulation by third-party payers and the government. These are difficult challenges, and the profession must respond actively to increase safety and efficiency at lowered From the Cardiovascular Division, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts. Presented at Medical and Surgical Consensus in CABG Referrals: Emphasis on High-Risk and Bloodless Surgery Patients, November 9, 1997, Orlando, Florida. Sponsored by an unrestricted medical education grant from Bayer Corporation. Address for reprints: Regis A. DeSilva, Cardiovascular Division, Beth Israel Deaconess Medical Center, 110 Francis Street, Suite 4B, Boston, Massachusetts 02215.
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©1999 by Excerpta Medica, Inc. All rights reserved.
PATIENTS AND FAMILIES WITH HIGH-RISK PROFILES Specific subgroups of high-risk patients (Table II) have been identified by Bursztajn and Brodsky.6 Pa0002-9149/99/$20.00 PII S0002-9149(99)00943-6
tients who have suffered previous trauma, especially in medical hands, are very suspicious of physicians. Patients who are hypochondriacal and/or narcissistic may also fit a high-risk profile. For example, the patient who gets up at 5 AM to spend an hour exercising and who has to be in perfect shape or the woman who uses excessive makeup even on the day of surgery may represent narcissistic personalities. These are patients fixated on their bodies; they will become very disappointed and depressed if anything goes wrong that medicine cannot repair. From a psychologic perspective, the patient may see the body as a “sacred” place, initially ravaged by disease and subsequently invaded by the physician. The occurrence of illness creates alterations in body perceptions that correct and rearrange certain fears and beliefs that the patient has. Sullivan7 has referred to the “body as the center of myth and the stage of transformative action.” In particular, beliefs regarding death and dying may draw upon primitive fears and beliefs that are common to many cultures. Hence, the dying process may share social, cultural, and family dynamics seen in nonwestern cultures.8 Although these processes are not clearly understood, it is worthwhile knowing that such adaptations to illness are complex, affecting how patients make individual decisions, however irrational they may seem to the physician. Another category of high-risk patients are those who are doctor shoppers and who sometimes will not disclose to a physician what is wrong with them, believing that it is the doctor’s duty to make the diagnosis unaided. In some cases, they may not provide results of previous tests or may provide deliberately misleading clues. These patients are not seeking a second or third opinion; they are looking for a physician who will agree with their own diagnosis or who will fit with their own particular requirements for care. High-profile public figures (e.g., star athletes, performers, or politicians) constitute a specialized group that will seek exemption from ordinary constraints, either to keep up with professional demands or to not lose income or preeminence in their fields. Such patients may impose impossible demands on physicians or manipulate situations to enable them to play competitive sports or undertake tasks beyond normal safety limits. They may seek out physicians amenable to their bidding, thus possibly creating situations that are medically risky for the patient and legally risky for the physician. Patients who are angry or fearful because of previous medical misadventures also have a high-risk profile. It must, however, be clearly stated that patients who possess any of the above characteristics are not necessarily going to prove to be high-risk patients, but such profiles do provide useful information to which clinicians need to be attentive. It also is necessary to be aware of certain high-risk families (Table III). Families often have unresolved interpersonal issues and members may harbor hostilities toward each other. Such a situation may lead to lack of agreement in decisions affecting the care of the patient. Particular care is required in dealing with
TABLE I Four Models of the Physician–Patient Relationship Paternalistic
Physician decides what is in best interest of patient
Informative
Patient is fully informed of alternatives, selects intervention; physician acts as executor
Interpretive
Physician helps elucidate and interpret values to help decision(s), but patient ultimately makes the decision
Deliberative
Patient and physician engage in a dialogue and physician, without coercion, indicates what the patient could and should do
Adapted from JAMA.2
TABLE II High-Risk Patient Profiles That Affect Decision Making ● ● ● ● ● ● ●
Previous trauma Hypochondriacal manifestations Narcissistic personality Litigation oriented “Doctor shoppers” Anger or fear related to prior medical misadventures Entitled patients Adapted from Arch Intern Med.6
TABLE III High-Risk Family Profiles ● Have experienced unexpected medical death or other adverse outcomes ● Take care of chronically ill patients ● Families of abusive patients ● Families of patients with somatoform disorders Adapted from Arch Intern Med.6
families of patients who are unconscious, on respirators, or dying. These situations often lead to miscommunication and misunderstanding between caregivers and families, often because the patient is not in a position to benefit directly from a dialogue with the physician and cannot serve as the intermediary between family and medical staff. Families who have experienced unexpected medical death or other adverse outcomes may be high-risk families for subsequent problems with physicians. When a family member says something like “My mother had coronary bypass surgery 5 years ago and the doctors did something wrong; she would be alive today if the doctors had not been so incompetent,” one should be alert to the possibility that blame may be directed at the physician in the event of an adverse medical outcome. Relatives who care for chronically ill patients are sometimes angry because of the demands placed on them, and they may be prompted to be abusive. Since they often do not or cannot abuse the person being cared for, anger is deflected toward the physician or other caregivers. A corollary to this situation is the patient who abuses family members. They may also A SYMPOSIUM: CURRENT AND FUTURE ISSUES IN CABG
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be abusive toward caregivers as part of a generalized response to their frustration and distress. Relatives of patients with somatoform disorders may constitute another high-risk group. To illustrate, consider the patient who has chest pain of noncardiac origin and who has repeatedly shown up in the emergency room complaining of chest pain. Such atypical chest pain may occur in the presence of emotional conflict or present as panic disorder, or it may be used as a way of gaining attention.9 In each visit to the emergency room, the electrocardiogram may have shown no acute changes and the patient was discharged. The patient might subsequently present with acute myocardial infarction, receive a mistaken diagnosis of atypical chest pain, based on the past history, and be discharged without an electrocardiogram. The patient’s family may then litigate on the basis of negligent care by the physician. Clearly, it is imperative to treat each episode of chest pain separately and to follow the protocol for excluding acute infarction.
GENDER DIFFERENCES AFFECTING DECISION MAKING Decision-making processes may differ between men and women. This view is supported, in part, by results from the Medical Outcomes Study10 showing female patients as having greater participatory visits with their physicians compared with male patients. The gender of the physician also played a role in patient participation in their care, as female physicians had a more participatory role with both male and female patients. Certainly, not all men and women show gender-specific responses to the prospect of cardiac surgery, but it appears that the sexes may respond differently. Some preliminary observations can be made from time logs kept during patient encounters in the office (DeSilva RA, unpublished observations). Judging from the time taken for discussion, women ask many more questions than men do, seem to need more complete communication with the physician, seek more consultation with their families, and tend to take longer to make the final decision. They often want to know a great deal more about what is going to be done during diagnostic and surgical procedures. Even when it is the husband who is having surgery, it is the wife who often asks the most searching questions. Patients and relatives who ask such questions should be welcomed, as it provides an opportunity for a physician to supply details of planned procedures and to discuss possible complications and other adverse outcomes. Although it is not entirely clear why these gender differences exist, they may relate to differences in emotional responses to illness between the sexes, differing needs for communication, and differing levels of verbal skill. Another reason may be that women appear to have a greater fear of mutilation. The front of the chest, the site of scarring after cardiac surgery, is a much more physically and emotionally sensitive area for women than for men. They are more uncomfortable with the cosmetic aspects of the chest and leg scars left by coronary bypass and other forms of 12B THE AMERICAN JOURNAL OF CARDIOLOGYT
cardiac surgery. Women also have a lower threshold for pain and for anxiety, and hence experience considerably more pain, discomfort, and emotional distress with respect to surgical procedures.
UNDISCLOSED BELIEFS AND “HIDDEN HISTORY” Patient decision-making can be affected by mistaken beliefs about medical care. Patients often have considerable misinformation or mistaken understandings about procedures such as catheterization and surgery, recovery, and rehabilitation. Surprising as it may seem, after having had catheterization described to them, a few men at our medical center have asked whether the catheter is inserted through the penis. They inferred that reference to the groin was a euphemism and were not willing to undergo the procedure until this issue was resolved. Another mind-set that may affect decision making is the adherence of many patients to alternative medicine and other nontraditional approaches to medical care. Eisenberg et al11 found that 34% of patients interviewed nationally admitted to using nontraditional forms of medical care and treatment in the previous year. The extrapolated number of visits to alternative medicine practitioners in 1990 was estimated at 425 million, and exceeded the number of visits to primary-care physicians by 37 million. The estimated cost was $13.7 billion, most of which was paid out of pocket, and 72% of these patients did not report these encounters to their usual physician. Some patients in our cardiology practice have taken various herbal remedies and have undergone chelation therapy (in addition to receiving traditional medicines for cardiac disease) despite the lack of evidence that such treatments are beneficial. Some patients at our institution have used “New Age” methods for making decisions. These have included using a pendulum, “channeling,” and crystals, as well as consulting alternative-medicine healers. Such patients, as noted earlier, may not readily confess to using alternative forms of treatment, and discovery of such by the physician is often accidental or inadvertent. Sometimes other aspects of a patient’s history are not disclosed, and significant types of health-related behavior may be hidden from the clinician. In one case, a noncompliant patient who had had frequent difficulties with his male cardiologist refused diagnostic procedures and treatment suggestions. He finally confessed that his difficulty with his cardiologist stemmed from a traumatic encounter with his graduate advisor by whom he had been sodomized. He mistakenly believed his physician to be gay, and this was revealed only when the patient believed he was dying in the intensive care unit during an episode of pulmonary edema. This concealed or “hidden history” affected the patient’s medical decision-making process and compliance, as well as his relationship with the physician. When he recovered, both the relationship with his physician and his compliance with treatment improved. The decision-making process in these cases is
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TABLE IV Genesis of a Medical Malpractice Suit ● Unfavorable outcome ● Patient’s sense of little or no role in decision making ● Patient’s sense of alienation from physician
probably very complex. It involves elements of magical thinking, the belief that herbal or alternative medications are harm-free and more potent than approved drugs, and that relatively noninvasive treatments such as chelation or visualization therapy will physically reverse pathologic lesions such as coronary obstructions. These alternative strategies may be a method of averting the need for painful and fear-provoking diagnostic and surgical procedures to correct medical problems. There is also the deep-seated fear of death, and desperate patients will clutch at any alternative if traditional medicine has little to offer. As Kleinman and colleagues12 have pointed out, knowledge and exploration of unconventional therapies will increase communication between patients and doctors and improve clinical care. The role of the physician as magician is also one that is very potent, and this role is powerfully exploited by exponents of traditional and alternative medicine alike.7,8,11–13
CONTRIBUTING FACTORS TO A MALPRACTICE SUIT There usually are 3 patient factors that contribute to the genesis of a malpractice suit (Table IV). First, is an unfavorable outcome from the patient’s viewpoint. The physician may not consider the outcome to be unfavorable, but the patient believes that what was done was inappropriate or incorrect. Second, the patient feels that he or she had little or no role in decision making. This may well be the most important factor of all if the patient voices concerns such as, “You did not give me a chance to ask questions and to deal with the issues. You just did not give me enough time. You were not paying any attention to my wishes and concerns.” In our society, with its emphasis on individual rights, the patient’s point of view cannot be disdained in decision making. As mentioned earlier, the physician has to determine the appropriate model for interaction with the patient and make decisions in that context. Finally, the one factor common to all patients who sue physicians is their feeling of alienation, the feeling that the physician is not on their side. When depositions of patients who have sued physicians were analyzed, the most common reason given for suing was a lack of communication. In this study by Beckman et al,14 45 plaintiff depositions were reviewed from settled malpractice suits filed between 1985 and 1987. Problematic relationship issues between patient and physician were identified in 71% of cases. These issues included 4 categories: deserting the patient, devaluation of the patient and/or family views, inadequate delivery of information, and failure to understand the patient and/or family perspective on care. The conclusion of these investigators was that the medical attendants were perceived as demonstrat-
ing a lack of caring. In this regard, it is important to recognize that, for many adult patients, being sick is perceived as a defect or an inadequacy. Therefore, medical encounters may be seen as shameful and humiliating, and the emotions the patient experiences may be blamed on the physician.15 Patients may conceal shame and humiliation by avoiding the physician, by withholding crucial information, by complaining, or by suing the physician. Heightened awareness of these issues will help diminish difficulties with such patients. In his excellent review, Lazare15 discusses 12 clinical strategies for the management of this situation.
A RISK-REDUCTION PROTOCOL There are steps physicians can take to decrease the risk of legal liability. The greatest risks occur when there is a high degree of uncertainty in the diagnosis or the outcomes of treatment. A suggested risk-reduction protocol (Table V) for suspected acute myocardial infarction is provided as an example.16 It is absolutely essential to provide complete disclosure of the problem, therapeutic options, and risks. Be candid about the seriousness of the problem, and share with the patient the therapeutic options being weighed without necessarily committing to any 1 option, unless the course of action is absolutely clear. A common lay perception is that a physician or surgeon knows exactly what has to be done at the time a patient is examined briefly in the emergency room, before diagnostic catheterization is performed and before the chest is opened. Patients should be made aware that final decisions often cannot be made until the procedure is actually under way. Patients often do not recollect detailed discussions about their care, even when not acutely ill. Documenting discussions of diagnostic findings and treatment possibilities and anticipated risks and benefits, together with a time line, will be helpful in countering a patient’s contention that treatment options were not clearly outlined in discussions with the physician. Having a relative present will often reinforce the physician’s position that the discussion took place, even if the patient’s recollection is faulty. At the same time, it is necessary to clearly indicate that there is always an element of uncertainty about the outcomes of procedures. Patients must understand that there is an inescapable “uncertainty principle” in medical practice. It is quite an art to indicate uncertainty, while at the same time reassuring patients that you will do your very best, that you know what you are doing, that you and your colleagues are competent, and that you feel confident without being certain that the outcomes will necessarily always be excellent. A subset of patients have particular difficulty dealing with uncertainty. This topic, which is of great importance in itself, will not be dealt with in detail here. In cases of uncertainty, the treating physician has to assume a fundamental role in helping the patient make a decision, with full awareness that in the event of maloccurrence, the physician may be blamed for having influenced the decision. To a large extent, A SYMPOSIUM: CURRENT AND FUTURE ISSUES IN CABG
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TABLE V Protocol for Risk Reduction in Cardiac Patients ● Fully disclose seriousness of problem, the therapeutic options, and accompanying risk ● Elucidate the “uncertainty principle” in medical practice ● Strive to allay anxiety to enable patient and family to cope with uncertainty ● Cite treatment options; be open to consultations and second opinions ● Document discussions with patient and family of opinions, diagnostic findings, treatment options, risks, and benefits ● Communicate promptly with family in event of adverse outcomes ● Make recommendations for admission, follow-up, and emergency care post discharge ● Document patient’s refusal of care if patient leaves hospital against medical advice, as well as recommendations for follow-up and emergency care ● Notify risk-management office immediately if legal action can be anticipated ● DO NOT ALTER the medical record Adapted from FORUM Risk Management Foundation.16
outlining the risks and benefits in detail, informing responsible relatives, and documenting these discussions in the chart decreases the risk of misunderstanding and litigation. It is, of course, always necessary to apprise patients of treatment options. It is also important to be open to second opinions; this avoids conveying to patients the impression that only the treating physician knows what is right for them. In the event of an adverse outcome, it is important to communicate fully and immediately with the patient’s family. An adverse outcome must be disclosed at some point, and delay does not help matters. Families can be more forgiving when they are included in prompt disclosure. Should a maloccurrence entail the possibility of legal action, notify the institution’s risk-management office immediately so that legal liability can be properly assessed. Documentation is of special importance in cases involving patients who decline medical care and/or who sign out against medical advice. Generally, one can assume that it is safe to release the patient with notification of responsible relatives or guardians and the primary-care physician and with advice for emergency care and medical follow-up. In some cases, even when patients sign legal documents to sign out against advice, the physician may not be exonerated if such patients were judged to be mentally incompetent, highly agitated, or a danger to themselves or to others at the time of release from the hospital. A court order for restraint may be necessary, if such an option is available. Failing this option, clear documentation of all attempts to disallow discharge and of attempts to contact relatives and legal guardians is necessary to avoid the risk of being found liable for injuries or death that the patient might sustain after discharge.
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There is a final caution that needs to be emphasized in risk management: do not alter the medical record.17 Even if a mistake has not been made, but there is fear that parts of the record might be incriminating, the notes should not be altered in any way. Forensic examination will most likely detect the alteration, and it will be perceived as an admission of guilt. This might well destroy any possibility of mounting an effective defense in a court of law.
CONCLUSION The practice of clinical medicine has changed a great deal in the last 2 decades, due to increased patient activism, the specter of increased litigation against doctors, the advent of managed care, increased public and government scrutiny, and media attention. It is important for doctors to have a better understanding of how their patients make decisions and the factors that influence such decisions. The clinical situation together with social, cultural, and gender factors need to be considered in evaluating patients and in making recommendations. These factors not only affect medical decision making by patients, but also affect their decision to litigate against a physician. By taking into account the many factors that affect patient decision making, a risk-reduction protocol is suggested to avoid or neutralize problematic encounters with patients. 1. Veatch RM. A Theory of Medical Ethics. New York: Basic Books Inc, 1981. 2. Emanuel EJ, Emanuel LL. Four models of physician–patient relationship.
JAMA 1992;267:2221–2226. 3. Leape LL. Error in medicine. JAMA 1994;2772:1851–1857. 4. Ubel PA, Lowenstein G. The role of decision analysis in informed consent: choosing between instinct and systematicity. Soc Sci Med 1997;44:647– 656. 5. Mazur DJ, Hickam DH. The influence of physician explanations on patient preferences about future health-care status. Med Decis Making 1997;17:56 – 60. 6. Bursztajn H, Brodsky A. A new resource for managing malpractice risk in managed care. Arch Intern Med 1996;156:2057–2063. 7. Sullivan L. Personal political economy: symbolic control of integration and disintegration. J Latin Am Lore 1988;157–172. 8. Davis W, DeSilva RA. Psychophysiologic death: a cross-cultural and medical appraisal of voodoo death. Antropologica 1988;69:37–54. 9. DeSilva RA, Bachman W. Cardiac consultation in patients with neuropsychiatric problems. Cardiol Clin 1995;13:225–239. 10. Kaplan SH, Gandek B, Greenfield S, Rogers W, Ware JE. Patient and visit characteristics related to physicians’ participatory decision-making style. Results from the Medical Outcomes Study. Med Care 1995;33:1176 –1187. 11. Eisenberg DM, Kessler RC, Foster C, Norlock FE, Calkins DR, Delbanco TL. Unconventional medicine in the United States. Prevalence, costs, and patterns of use. N Engl J Med 1993;328:246 –252. 12. Kleinman A, Eisenberg L, Good B. Culture, illness and care: clinical lessons from anthropologic and cross-cultural research. Ann Intern Med 1978;88:251– 258. 13. Mauss M. A General Theory of Magic (translated from the French). New York: WW Norton, 1972. 14. Beckman HB, Markakis KM, Suchman AL, Frankel RM. The doctor–patient relationship and malpractice. Arch Intern Med 1994;154:1365–1370. 15. Lazare A. Shame and humiliation in the medical encounter. Arch Intern Med 1987;1477:1653–1658. 16. DeSilva RA, Ryan EM. Review of CRICO claims related to missed myocardial infarction. FORUM Risk Management Foundation of the Harvard Medical Institutions, 1996;16:2–7. 17. Prosser RL. Alteration of medical records submitted for medicolegal review. JAMA 1992;267:2630 –2631.
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