Medical decision making: paternalism versus patient-centered (autonomous) care Carlos A. Rodriguez-Osorio and Guillermo Dominguez-Cherit exico City, Mexico Medical literature has increasingly emphasize however, not all experts agree with this principle. This discord is based on varying Correspondence to Guillermo Dominguez-Cherit redence between the concepts of autonomy and beneficence. In critically ill patients, atm de Ciencias Medicas y Nutricion Savador this conflict involves the patient's family and creates a particular family-physician Tel: +52 55 5487 0900 x5020: fax: +52 55 5655 making and the family-physician relationship Recent findings Current Opinion in Critical Care 2008, 14: 708- The many studies published on this topic reveal that people' s preferences around the edical decision-making process vary substantially. Although it is clear that a shared decision approach is popular and desirable to some, it is not universally favored some patients prefer to leave final treatment decisions up to the doctor. This finding shows a robust moral pluralism, which requires special attention in multicultural societies. For critically ill patients, the diversity of opinion extends to the family, which creates a complex family-physician dynamic and necessitates utilization of particular interaction strategies. opportunity to participate in treatment by sharing decision-making responsibility. This would involve assessing the preferences of patients and their families in order to provide care accordingly. Clinicians should then ensure proper information is provided for informed decision making and minimize factors that could have potential adverse effect. Keywords autonomy, family-centered care, medical decision making, paternalism, patient centered care, relational autonomy Introduction Autonomy A review of the last decades in the history of medicine, The word autonomy comes from the Greek autos(self)and healthcare, and biotechnology identifies both longstand- nomos (rule, governance, or law)and was first used to refe g zones of ethical conflict and areas of relatively stable to self-government or self-rule. Although it originally social norms. Beauchamp and Childress [1] make empiri- applied to society, it has become a term that is used to cal claims about the universality of common morality: refer to individuals and is found in moral, political, however, contemporary liberal democracies are multi- and bioethical philosophy. Beauchamp and childress [1] cultural,multireligious, and pluralistic societies. In this describe it as the 'personal rule of the self that is free from view, there is a crucial difference between making nor- both controlling interferences by others and from personal mative claims about how humans ought to act and making limitations that prevent meaningful choice, such as transhistorical, cross-cultural claims about the empirical inadequate understanding. In a medical context, respect status of particular moral practices. In this article, we for a patient's autonomy is considered a fundamental eview some recent publications about patient and phys- ethical principle, and this belief is the central premise of n perceptions around medical decision making and the concept of informed consent. In addition, some studies the role of the family in the patient's autonomy Finally, have shown that the ability and opportunity to exercise we propose a practical approach for medical decision autonomy improves physical and psychological health and making in critical-care units. is generally a component of a good quality of life [2] 1070-5295 c 2008 Wolters Kluwer Do:10.1097MCc0b013e328315a611 Copyright Lippincott Williams wilkins Unauthorized reproduction of this article is prohibited
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Medical decision making: paternalism versus patient-centered (autonomous) care Carlos A. Rodriguez-Osorio and Guillermo Dominguez-Cherit Introduction A review of the last decades in the history of medicine, healthcare, and biotechnology identifies both longstanding zones of ethical conflict and areas of relatively stable social norms. Beauchamp and Childress [1] make empirical claims about the universality of common morality; however, contemporary liberal democracies are multicultural, multireligious, and pluralistic societies. In this view, there is a crucial difference between making normative claims about how humans ought to act and making transhistorical, cross-cultural claims about the empirical status of particular moral practices. In this article, we review some recent publications about patient and physician perceptions around medical decision making and the role of the family in the patient’s autonomy. Finally, we propose a practical approach for medical decision making in critical-care units. Autonomy The word autonomy comes from the Greek autos (self) and nomos (rule, governance, or law) and was first used to refer to self-government or self-rule. Although it originally applied to society, it has become a term that is used to refer to individuals and is found in moral, political, and bioethical philosophy. Beauchamp and Childress [1] describe it as the ‘personal rule of the self that is free from both controlling interferences by others and from personal limitations that prevent meaningful choice, such as inadequate understanding.’ In a medical context, respect for a patient’s autonomy is considered a fundamental ethical principle, and this belief is the central premise of the concept of informed consent. In addition, some studies have shown that the ability and opportunity to exercise autonomy improves physical and psychological health and is generally a component of a good quality of life [2]. Department of Critical Care Medicine, Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubiran, Mexico City, Mexico Correspondence to Guillermo Dominguez-Cherit, MD, Department of Critical Care Medicine, Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubiran, Vasco de Quiroga No. 15, Tlalpan, C.P. 14000 Distrito Federal, Mexico Tel: +52 55 5487 0900 x5020; fax: +52 55 5655 2510; e-mail: guidom@prodigy.net.mx Current Opinion in Critical Care 2008, 14:708– 713 Purpose of review Medical literature has increasingly emphasized the need to observe patients’ autonomy; however, not all experts agree with this principle. This discord is based on varying credence between the concepts of autonomy and beneficence. In critically ill patients, this conflict involves the patient’s family and creates a particular family–physician relationship. The purpose of this review is to assess the evidence on medical decision making and the family–physician relationship. Recent findings The many studies published on this topic reveal that people’s preferences around the medical decision-making process vary substantially. Although it is clear that a shared decision approach is popular and desirable to some, it is not universally favored; some patients prefer to leave final treatment decisions up to the doctor. This finding shows a robust moral pluralism, which requires special attention in multicultural societies. For critically ill patients, the diversity of opinion extends to the family, which creates a complex family–physician dynamic and necessitates utilization of particular interaction strategies. Summary Clinicians must understand the range of preferences in a society and should offer the opportunity to participate in treatment by sharing decision-making responsibility. This would involve assessing the preferences of patients and their families in order to provide care accordingly. Clinicians should then ensure proper information is provided for informed decision making and minimize factors that could have potential adverse effect. Keywords autonomy, family-centered care, medical decision making, paternalism, patientcentered care, relational autonomy Curr Opin Crit Care 14:708–713 2008 Wolters Kluwer Health | Lippincott Williams & Wilkins 1070-5295 1070-5295 2008 Wolters Kluwer Health | Lippincott Williams & Wilkins DOI:10.1097/MCC.0b013e328315a611
Medical decision making Rodriguez-Osorio and Dominguez-Cherit 709 A patient's freedom to decide can be impinged upon by forced, and how and when to discuss the patient's situ- internal factors arising from the patient's condition or by ation should be carefully evaluated. The proper amount external factors. Internal factors are those that affect the of information to disclose at any one time varies from ability of the patient to make decisions. For example, patient to patient Concerns regarding purportedly very a patient with metastatic prostate cancer must decide bad outcomes of disclosure, including loss of hope, about noninvasive mechanical ventilation while suffering premature death, or suicide, are anecdotal and lack any severe bone pain. In this case, the pain functions as an real empirical foundation [10] internal factor and must be controlled as much as possible to assist the patient in the decision-making process. Despite the espoused importance of patient autonomy, External factors, which are the focus of this review, there are some limitations. Beauchamp and Childress [1] include the ability of others to exert control over a patient have suggested four principles that may limit autonomy by force, coercion, or manipulation. Force involves the the harm iple, the principle of paternalism, the use of physical restraint or sedation to enable a treatment principle of legal moralism, and the welfare principle e given. Coercion involves the use of explicit or However, according to some experts, only the principle of mplicit threats to ensure that a treatment is accepted. harm would be an appropriate situation in which to Manipulation involves a deliberate distortion or omission consider restrictions of autonomy. According to this prin of information in an attempt to induce the patient to ciple, we should restrict the freedom of those whose accept a treatment or make a certain decision [3]. To expressions of autonomy would result in harm to another avoid coercion and manipulation, the physician must individual. This brings to light the concept of paternalism provide accurate and relevant information. This is a [ 1, 11I, which will be discussed later. Physician's beliefs significant issue, as informed patients are empowered are another difficulty to overcome in the context of to make decisions affecting their lives as a whole that they patient autonomy. One study in the setting of critical- could not have made had they been unaware of the true care medicine found that 23% of 879 American physicians nature of their condition had withdrawn therapy without the patient's or familys consent, 12%o without their knowledge, and 3% despite Autonomy requires an appropriate relationship between their objections [12]. Therefore, it seems that although vided useful suggestions for developing a framework for and difficult to respec er valve, it is both hard to attain patient(or family)and physician. Charles et al. [4] pro- autonomy is a sought-afte the analysis of treatment-related decision making and proposed three analytical approaches: the paternalistic approach, characterized by physician control; the Paternalism informed approach, also called consumerism, character- Clinicians are often faced with an inherent tension ized by division of labor and preservation of patient between their desire to respect and foster patient auto- autonomy; and the shared approach, characterized by nomy and their responsibility to act in a patient's best simultaneous interaction between both the patient and interest(which some might call paternalism).Paternal- physician in all stages of the decision-making process. ism comes from the Latin pater, meaning to act like a Some studies have shown that most patients, especially in father, or to treat another person like a child. Beaucham the United States, want to be completely informed about and Childress [1] wrote: 'Paternalism, then, is the inten their medical situation and prefer the shared decision- tional overriding of one persons known preferences or making approach [5, 6, 7]. However, other studies actions by another person, where the person who over- suggest that 10-20% of all patients do not want to know rides, justifies the action by the goal of benefiting or the details of their condition [8], and 9-17% prefer to avoiding harm to the person whose preferences or actions leave decisions to their family or their physicians [5, 9]. are overridden Complete knowledge regarding one's medical condition can have negative consequences. For example, one study Paternalism can be divided into hard and soft, broad and found that providing cancer patients with more detailed narrow, pure and impure, moral and welfare, and active information resulted in higher anxiety levels [9], which and passive [13]. This discussion is limited to hard, soft, could adversely influence medical care decisions. How- active, and passive paternalism. Soft, or weak, patern ever, poor disclosure is typically done too hurriedly, in the ism is a philosophy that believes the physician or the state wrong setting, without appreciation of the patient' s cir- can help you make the choices you would make for cumstances and without addressing the patient's real yourself, if only you had the strength of will and the needs and fears. For this reason, physicians should start sharpness of mind. A weak paternalist believes that it is from the assumption that all patients are able to cope with legitimate to interfere with the means that agents choose the facts and reserve nondisclosure for the less usual cases to achieve their ends, if those means are likely to defeat for which more harm will result from telling the truth than those ends. But unlike hard paternalists, who ban some from not telling it. Truth should be offered, but not things and mandate others, the softer kind aims only to Copyright Lippincott Williams wilkins Unauthorized reproduction of this article is prohibited
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. A patient’s freedom to decide can be impinged upon by internal factors arising from the patient’s condition or by external factors. Internal factors are those that affect the ability of the patient to make decisions. For example, a patient with metastatic prostate cancer must decide about noninvasive mechanical ventilation while suffering severe bone pain. In this case, the pain functions as an internal factor and must be controlled as much as possible to assist the patient in the decision-making process. External factors, which are the focus of this review, include the ability of others to exert control over a patient by force, coercion, or manipulation. Force involves the use of physical restraint or sedation to enable a treatment to be given. Coercion involves the use of explicit or implicit threats to ensure that a treatment is accepted. Manipulation involves a deliberate distortion or omission of information in an attempt to induce the patient to accept a treatment or make a certain decision [3]. To avoid coercion and manipulation, the physician must provide accurate and relevant information. This is a significant issue, as informed patients are empowered to make decisions affecting their lives as a whole that they could not have made had they been unaware of the true nature of their condition. Autonomy requires an appropriate relationship between patient (or family) and physician. Charles et al. [4] provided useful suggestions for developing a framework for the analysis of treatment-related decision making and proposed three analytical approaches: the paternalistic approach, characterized by physician control; the informed approach, also called consumerism, characterized by division of labor and preservation of patient autonomy; and the shared approach, characterized by simultaneous interaction between both the patient and physician in all stages of the decision-making process. Some studies have shown that most patients, especially in the United States, want to be completely informed about their medical situation and prefer the shared decisionmaking approach [5,6,7]. However, other studies suggest that 10–20% of all patients do not want to know the details of their condition [8], and 9–17% prefer to leave decisions to their family or their physicians [5,9]. Complete knowledge regarding one’s medical condition can have negative consequences. For example, one study found that providing cancer patients with more detailed information resulted in higher anxiety levels [9], which could adversely influence medical care decisions. However, poor disclosure is typically done too hurriedly, in the wrong setting, without appreciation of the patient’s circumstances and without addressing the patient’s real needs and fears. For this reason, physicians should start from the assumption that all patients are able to cope with the facts and reserve nondisclosure for the less usual cases for which more harm will result from telling the truth than from not telling it. Truth should be offered, but not forced, and how and when to discuss the patient’s situation should be carefully evaluated. The proper amount of information to disclose at any one time varies from patient to patient. Concerns regarding purportedly very bad outcomes of disclosure, including loss of hope, premature death, or suicide, are anecdotal and lack any real empirical foundation [10]. Despite the espoused importance of patient autonomy, there are some limitations. Beauchamp and Childress [1] have suggested four principles that may limit autonomy: the harm principle, the principle of paternalism, the principle of legal moralism, and the welfare principle. However, according to some experts, only the principle of harm would be an appropriate situation in which to consider restrictions of autonomy. According to this principle, we should restrict the freedom of those whose expressions of autonomy would result in harm to another individual. This brings to light the concept of paternalism [1,11], which will be discussed later. Physician’s beliefs are another difficulty to overcome in the context of patient autonomy. One study in the setting of criticalcare medicine found that 23% of 879 American physicians had withdrawn therapy without the patient’s or family’s consent, 12% without their knowledge, and 3% despite their objections [12]. Therefore, it seems that although autonomy is a sought-after value, it is both hard to attain and difficult to respect. Paternalism Clinicians are often faced with an inherent tension between their desire to respect and foster patient autonomy and their responsibility to act in a patient’s best interest (which some might call paternalism). ‘Paternalism’ comes from the Latin pater, meaning to act like a father, or to treat another person like a child. Beauchamp and Childress [1] wrote: ‘Paternalism, then, is the intentional overriding of one person’s known preferences or actions by another person, where the person who overrides, justifies the action by the goal of benefiting or avoiding harm to the person whose preferences or actions are overridden.’ Paternalism can be divided into hard and soft, broad and narrow, pure and impure, moral and welfare, and active and passive [13]. This discussion is limited to hard, soft, active, and passive paternalism. Soft, or weak, paternalism is a philosophy that believes the physician or the state can help you make the choices you would make for yourself, if only you had the strength of will and the sharpness of mind. A weak paternalist believes that it is legitimate to interfere with the means that agents choose to achieve their ends, if those means are likely to defeat those ends. But unlike hard paternalists, who ban some things and mandate others, the softer kind aims only to Medical decision making Rodriguez-Osorio and Dominguez-Cherit 709
710 Ethical, legal and organizational issues in the ICU skew your decisions, without infringing greatly on your but that it is not held universally by the public. As noted, freedom of choice. Conversely, a hard, or strong, patern- some respondents preferred to rely on physicians fo alist believes that people may be mistaken or confused information about their condition and others preferred about their ends and that it is legitimate to interfere to to leave final treatment decisions up to the doctor. This prevent them from achieving those ends. This kind of finding could vary based on the severity of the situation, ternalism involves an individual who refuses to accept that is, when the situation involves potential mortality another's autonomous decision in actions or choices [13]. when the respondents health status is deteriorating [16 On the contrary, a paternalistic view may involve active or In addition, factors such as age, sex, and education passive nonacquiescence to the patients choices. In have consistently been shown to impact patients'desire active nonacquiescence, the paternalist refuses to accept for information and decision making in several studies a patient's request for nonintervention or noninterfer- [17-19]. Culture also plays a role in this scenario. Studies ence, whereas, in passive nonacquiescence, a paternalist have shown that African-American, Hispanic [5, and refuses to carry out the wishes or choices of a patient or to Japanese [9] respondents more frequently reported that assist the patient in his or her action. It is easier, ceteris they prefer their family or physicians make final decisions. paribus, to justify passive paternalism than active patern alism, because passive paternalism confirms the pro- fessional's autonomy, arming they are not an instru- physicians opinions about medical decision ment of their patients'wishes, and because passive making paternalism leaves the patient with other options [ 14] Recently, Murray et al.[20"]conducted a survey within a nationally representative most cases, the antipaternalist rejects any form of ican physicians. They found that 75% paternalism. However, some antipaternalists do not reject preferred to share decision making with their patients, weak paternalism. Paternalism can be justified if it 14% preferred paternalism, and 11% preferred an rovides great benefit or prevents major problems informed approach. Older physicians(aged 50 or older) while disrespecting autonomy only slightly. According were more likely to perceive themselves as practicing to Beauchamp and Childress (11, we should accept paternalism. Physicians trained abroad were less likely to aternalism as a benefit for the patient only in certain perceive themselves as practicing shared decision making tuations, when the patient is at risk of a significant, than those trained in America, but they were more likely preventable harm; the paternalistic action will probably to report practicing either paternalism or an informed prevent the harm; the projected benefits to the patient of approach. Respondents from surgical specialties were less the paternalistic action outweigh the risks to the patient; likely to report paternalism and more likely to report and the least autonomy-restricting alternative that will consumerism compared with physicians from either secure the benefits and reduce the risks is adopted. medical or primary care specialties Despite the fact that patient involvement in treatment- Although paternalism could be preferred by some respo promoted in both clinical and policy-making settings, suggest that individuals in long-standing relationships research conducted in developed and in developing tend to build implicit decision-making processes fre ountries revealed that people's preferences regarding quently leading to a false sense of knowledge about their role in the decision-making process vary substan- another's desires and wishes. Moreover, limiting auto- ially (4, 5", 15]. Recently, a large cross-sectional survey nomy would lead to potentially negative health con [5"] conducted among the American public using com- sequences as a result of the loss of control over one's puter-assisted telephone interviewing found that 62% of own life, including negative physical, social and psycho- informed approach. and 9% paternalism. In another and self-esteem in some patients l mini ferred shared decision making. 28% logical outcomes, poorer health, and diminished morale population-based survey of a representative sample of English-speaking adults conducted in conjunction with the General Social Survey in United States, nearly all Family-centered care respondents(96%)reported they preferred to be offered Although shared decision making and patient autonomy choices and to be asked their opinions. However, this was are desirable, the situation may be different when con not for all situations; half of the respondents(52%) sidering critically ill patients. These patients are often preferred to leave final decisions to their physicians incapable of providing consent, and unless they had and 44% preferred to rely on phy for medical usly filed to the heir families receive knowledge rather than seeking out information the full information on their diagnosis, prognosis, and treat selves [15]. These examples suggest that a collaborative ment, and are anticipated to make medical decisions on nodel of decision making is popular and may be desirable, their behalf. For this reason, healthcare providers in ICU Copyright Lippincott Williams wilkins Unauthorized reproduction of this article is prohibited
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. skew your decisions, without infringing greatly on your freedom of choice. Conversely, a hard, or strong, paternalist believes that people may be mistaken or confused about their ends and that it is legitimate to interfere to prevent them from achieving those ends. This kind of paternalism involves an individual who refuses to accept another’s autonomous decision in actions or choices [13]. On the contrary, a paternalistic view may involve active or passive nonacquiescence to the patient’s choices. In active nonacquiescence, the paternalist refuses to accept a patient’s request for nonintervention or noninterference, whereas, in passive nonacquiescence, a paternalist refuses to carry out the wishes or choices of a patient or to assist the patient in his or her action. It is easier, ceteris paribus, to justify passive paternalism than active paternalism, because passive paternalism confirms the professional’s autonomy, affirming they are not an instrument of their patients’ wishes, and because passive paternalism leaves the patient with other options [14]. In most cases, the antipaternalist rejects any form of paternalism. However, some antipaternalists do not reject weak paternalism. Paternalism can be justified if it provides great benefit or prevents major problems while disrespecting autonomy only slightly. According to Beauchamp and Childress [1], we should accept paternalism as a benefit for the patient only in certain situations, when the patient is at risk of a significant, preventable harm; the paternalistic action will probably prevent the harm; the projected benefits to the patient of the paternalistic action outweigh the risks to the patient; and the least autonomy-restricting alternative that will secure the benefits and reduce the risks is adopted. Despite the fact that patient involvement in treatmentrelated decision making has been widely advocated and promoted in both clinical and policy-making settings, research conducted in developed and in developing countries revealed that people’s preferences regarding their role in the decision-making process vary substantially [4,5,15]. Recently, a large cross-sectional survey [5] conducted among the American public using computer-assisted telephone interviewing found that 62% of respondents preferred shared decision making, 28% informed approach, and 9% paternalism. In another population-based survey of a representative sample of English-speaking adults conducted in conjunction with the General Social Survey in United States, nearly all respondents (96%) reported they preferred to be offered choices and to be asked their opinions. However, this was not for all situations; half of the respondents (52%) preferred to leave final decisions to their physicians and 44% preferred to rely on physicians for medical knowledge rather than seeking out information themselves [15]. These examples suggest that a collaborative model of decision making is popular and may be desirable, but that it is not held universally by the public. As noted, some respondents preferred to rely on physicians for information about their condition and others preferred to leave final treatment decisions up to the doctor. This finding could vary based on the severity of the situation, that is, when the situation involves potential mortality or when the respondents’ health status is deteriorating [16 ]. In addition, factors such as age, sex, and education have consistently been shown to impact patients’ desire for information and decision making in several studies [17–19]. Culture also plays a role in this scenario. Studies have shown that African–American, Hispanic [5], and Japanese [9] respondents more frequently reported that they prefer their family or physicians make final decisions. Physicians’ opinions about medical decision making Recently, Murray et al. [20] conducted a cross-sectional survey within a nationally representative sample of American physicians. They found that 75% of physicians preferred to share decision making with their patients, 14% preferred paternalism, and 11% preferred an informed approach. Older physicians (aged 50 or older) were more likely to perceive themselves as practicing paternalism. Physicians trained abroad were less likely to perceive themselves as practicing shared decision making than those trained in America, but they were more likely to report practicing either paternalism or an informed approach. Respondents from surgical specialties were less likely to report paternalism and more likely to report consumerism compared with physicians from either medical or primary care specialties. Although paternalism could be preferred by some respondents (patients and physicians), a number of researchers suggest that individuals in long-standing relationships tend to build implicit decision-making processes frequently leading to a false sense of knowledge about another’s desires and wishes. Moreover, limiting autonomy would lead to potentially negative health consequences as a result of the loss of control over one’s own life, including negative physical, social and psychological outcomes, poorer health, and diminished morale and self-esteem in some patients [2]. Family-centered care Although shared decision making and patient autonomy are desirable, the situation may be different when considering critically ill patients. These patients are often incapable of providing consent, and unless they had previously filed to the contrary, their families receive full information on their diagnosis, prognosis, and treatment, and are anticipated to make medical decisions on their behalf. For this reason, healthcare providers in ICU 710 Ethical, legal and organizational issues in the ICU
Medical decision making Rodniguez-Osorio and Dominguez-Cherit 711 have devoted considerable attention to families, creating proxy rejected their advice, the information, the involve- the concept of family-centered care [21, 22]. In many ment of family members, and final decision should be countries, a consensus seems to exist that the patient's recorded clearly in the patient's chart. Additionally, natural proxy is their family. For example, family similar to patients developing anxiety with too much participation in end-of-life decisions is almost universal information, family members may also experience n the United States(93-100%), whereas somewhat more anxiety and depression around the diagnosis, risk of variable in Europe (84-4790)[23]. It must be noted, death, or treatment plan of their loved ones. If the family however, that this definition of family involvement decision maker is too affected, there is a risk of may not include sharing in decision making, as 88% of inadequate proxy decision making [22]. For this reason, families in Europe were simply told that the end-of-life ICU healthcare workers should strive to alleviate these policy was being enacted, whereas only 38% were asked symptoms by establishing effective and compassionate their opinions [24] communication. Often, identifying a key influential mber of the family the The family-physician relationship in the ICU is a com the family is extremely helpful plex interaction that requires ICU staff to provide appro- priate and accurate information and the family members to function as surrogate decision makers by providing The role of family in patients'autonomy information about the patient's wishes. These com- Contemporary patients are faced with increasingly com- ponents are necessary to choose the management strategy plex choices, some of which are expensive and/or exis- that will best fit the patient's wishes, preferences, and tentially tragic. Even cases in which patients are compe- values. One important issue is the ability of family to tent and able to participate in decision making, such know the patient's preferences and values. One study deliberation can be physically and emotionally exhaust- showed that surrogate decision makers for ICU patients ing. Additionally, as specialized medicine has resulted in made unwanted treatment decisions in about 20% of patients being attended by more clinicians than ever overall cases, with less agreement (50-88%)occurring before, certain medical care has become increasingly in regard to decision making for the critically ill [25, 26]. impersonal and fragmented. This is true particularly in Despite this lack of the knowledge of patients'wishes, ICU, in which healthcare team members usually only studies from the FAmirEa group in France have shown focus on their own specialty. This could cause critically ill that 90% of respondents were favorable to surrogate patients to feel isolated, and is of particular concern for designation if they were admitted to an ICU and 85% minority patients who may face language or cultural said they would want their surrogate to share in discus- issues or may not be familiar with the healthcare system sions and decisions with the intensivists. Moreover 85% or western medicine [11. In this context, it seems that of nurses and 90% of physicians supported family invol- family involvement and patients' relational identity are vement in care and decision making [21,271. These more important than ever in preserving or restoring results suggest that most individuals feel that proxy patients autonomous agency contribution to the decision-making process is preferable may be more inclined to trust their familys judgment to leaving the decision entirely to the intensivists. over paternalistic doctors'claims When families are involved in medical decision making, The autonomist framework ignores patients' duties the familys needs and preferences should be reassessed toward their family members and family members'inter frequently as they may change over time and cause est around care of their loved one. When professional problems in the family-physician relationship. Conflict pressure patients to make independent decisions, they between families and the ICU staff is not uncommon and risk severing the intimate ties that hold patients and their one study found that family members felt they received families together, leaving patients feeling overwhelmed sufficient information regarding the patient's condition, in fending for themselves and families being left out of the cause of death, and the methods used to relieve pain the patients journey. Clinicians should acknowledge that and anxiety in the patient [28]. Resolution of these self-determining patients exist fundamentally in relation conflicts can usually be achieved with sensitive nego- to others, and that their interests involve a dynamic tiation: however. when these measures fail. external balance among interdependent people who have over- arbiters may have to be employed. These could include lapping considerations [11,221 an ethics consultant(a third party not involved in the ICU care of the specific patient and not necessarily a phys- Conversely, in cases in which professionals suspect that ician)or an ethics committee [24]. Otherwise, if a clin- the patient may be going along with his/her familys ician attempted to persuade a patient or their family to suggestions out of familial pressure, they should privately follow a particular course of action based on medical discuss patient goals and family dynamics, examine how evidence and clinical judgment, and the patient or their patients come to their decisions, and address their Copyright Lippincott Williams wilkins Unauthorized reproduction of this article is prohibited
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. have devoted considerable attention to families, creating the concept of family-centered care [21,22]. In many countries, a consensus seems to exist that the patient’s natural proxy is their family. For example, family participation in end-of-life decisions is almost universal in the United States (93–100%), whereas somewhat more variable in Europe (84–47%) [23]. It must be noted, however, that this definition of family involvement may not include sharing in decision making, as 88% of families in Europe were simply told that the end-of-life policy was being enacted, whereas only 38% were asked for their opinions [24]. The family–physician relationship in the ICU is a complex interaction that requires ICU staff to provide appropriate and accurate information and the family members to function as surrogate decision makers by providing information about the patient’s wishes. These components are necessary to choose the management strategy that will best fit the patient’s wishes, preferences, and values. One important issue is the ability of family to know the patient’s preferences and values. One study showed that surrogate decision makers for ICU patients made unwanted treatment decisions in about 20% of overall cases, with less agreement (50–88%) occurring in regard to decision making for the critically ill [25,26]. Despite this lack of the knowledge of patients’ wishes, studies from the FAMIREA group in France have shown that 90% of respondents were favorable to surrogate designation if they were admitted to an ICU and 85% said they would want their surrogate to share in discussions and decisions with the intensivists. Moreover, 85% of nurses and 90% of physicians supported family involvement in care and decision making [21,27]. These results suggest that most individuals feel that proxy contribution to the decision-making process is preferable to leaving the decision entirely to the intensivists. When families are involved in medical decision making, the family’s needs and preferences should be reassessed frequently as they may change over time and cause problems in the family–physician relationship. Conflict between families and the ICU staff is not uncommon, and one study found that family members felt they received insufficient information regarding the patient’s condition, the cause of death, and the methods used to relieve pain and anxiety in the patient [28]. Resolution of these conflicts can usually be achieved with sensitive negotiation; however, when these measures fail, external arbiters may have to be employed. These could include an ethics consultant (a third party not involved in the ICU care of the specific patient and not necessarily a physician) or an ethics committee [24]. Otherwise, if a clinician attempted to persuade a patient or their family to follow a particular course of action based on medical evidence and clinical judgment, and the patient or their proxy rejected their advice, the information, the involvement of family members, and final decision should be recorded clearly in the patient’s chart. Additionally, similar to patients developing anxiety with too much information, family members may also experience anxiety and depression around the diagnosis, risk of death, or treatment plan of their loved ones. If the family decision maker is too affected, there is a risk of inadequate proxy decision making [22]. For this reason, ICU healthcare workers should strive to alleviate these symptoms by establishing effective and compassionate communication. Often, identifying a key influential member of the family to be the primary discussant for the family is extremely helpful. The role of family in patients’ autonomy Contemporary patients are faced with increasingly complex choices, some of which are expensive and/or existentially tragic. Even cases in which patients are competent and able to participate in decision making, such deliberation can be physically and emotionally exhausting. Additionally, as specialized medicine has resulted in patients being attended by more clinicians than ever before, certain medical care has become increasingly impersonal and fragmented. This is true particularly in ICU, in which healthcare team members usually only focus on their own specialty. This could cause critically ill patients to feel isolated, and is of particular concern for minority patients who may face language or cultural issues or may not be familiar with the healthcare system or western medicine [11]. In this context, it seems that family involvement and patients’ relational identity are more important than ever in preserving or restoring patients’ autonomous agency and that many patients may be more inclined to trust their family’s judgment over paternalistic doctors’ claims. The autonomist framework ignores patients’ duties toward their family members and family members’ interest around care of their loved one. When professionals pressure patients to make independent decisions, they risk severing the intimate ties that hold patients and their families together, leaving patients feeling overwhelmed in fending for themselves and families being left out of the patients’ journey. Clinicians should acknowledge that self-determining patients exist fundamentally in relation to others, and that their interests involve a dynamic balance among interdependent people who have overlapping considerations [11,22]. Conversely, in cases in which professionals suspect that the patient may be going along with his/her family’s suggestions out of familial pressure, they should privately discuss patient goals and family dynamics, examine how patients come to their decisions, and address their Medical decision making Rodriguez-Osorio and Dominguez-Cherit 711
712 Ethical, legal and organizational issues in the ICU ae erns regarding their situation at hand. In cases in to provide individualized care. When the patient or which it is clear that the patient would like to be free of family agrees to receive the information and make milial influence, clinicians could discuss various ways to decision, clinicians should ensure that informational support his/her interests without creating more familial needs are met and should minimize the potential infu nimosity. Since professionals are usually unfamiliar with ences of internal and external factors to the best of their heir patients' relational history and family dynamics, it is ability. Finally, understanding the range and distribution more important for them to follow their patients' own of preferences within populations is important to health- ssessment and expressed wishes rather than to author- care organizations seeking to appropriately tailor health itatively'free them from their families [11"1 promotion program On the contrary, given that physician paternalism is also Acknowledgements een in many countries [16,19] and numerous patients The authors appreciate the helpful suggestions of Dr Juan A Rll in the re treated in multicultural urban societies, it can be preparation of the manuscript expected that significant diffe erences rega of individuals or families as decision makers will be found between patients and healthcare providers. The incom- References and recommended reading ew, have ntibility of values between patients and healthcare Papers of particular interest, published providers and the judgments they support may result in incompatible bioethical claims. Consequently, those ot out standing interest Additional references related to this topic can also be found in the Current ngaged in these substantive moral controversies who World Literature section in this issue(pp 730-731 ssess what is at stake, separated by incommensurable moral-metaphysical frameworks, and attempt to resolve 1 Beauchamp TL, Childress JF.Principles of biomedical ethics. Oxford:Oxford University Press: 2001 such controversies by sound rational argument will be 2 Tuckett AG. On paternalism, autonomy and best interests: telling characterized by begging the question, arguing in circles, sident what they want to know. Int J Nurs 2006;12:166-173. engaging in infinite regress 129. However, healthcare 3 Dykeman M, Dewhirst K. Voluntariness. In: Singer PA Viens AM, editors. The organizations will seek to appropriately tailor health promotion programs in order to improve understanding of the range and distribution of preferences within Charles CA, Whelan T, Gafni does it mean to physicians? J Clin Oncol 2003; 21: 932-936. 5 Murray E, Pollack L, White M, Lo B. Clinical decision-making: patients Thus, it has been increasingly emphasized that merely A large erences and exp s Patient Educ Couns 2007: 65: 189-196. pressuring patients to decide a treatment option could regarding preferred approach. The main findings are that 629 of respondents preferred shared decision making, 28%6 preferred inform have negative psychosocial consequences, if the patient preferred patemalism. does not wish to be the final decision maker; physicians r: physicIans 6 Butow PN, Maclean M, Dunn SM, et al. The dynamics of chan should'sound out' patients' preferences in this regard to lement and support. find means for a peaceable collaboration that does not equire stakeholders to abandon their moral commit ecision making for invasive medical procedures. J Gen Intern Med 1997; ments or compromise their moral integrity; this will require conscience clauses that recog nize the existence 8 Schattner A. What do patients really want to know? QJM 2002; 95: 135- of moral disparities and accept different assumptions. 136 9 Sekimoto M, Asai A, Ohnishi M, et al. Patients' preferences for involvement in treatment decision making in Japan. BMC Fam Pract 2004: 5: 1 Conclusion 10 Hebert PC, Hoffmaster B, Glass KC. Truth telling. In: Singer PA, Viens AM, Throughout this review, we have emphasized that phys University Press: 2008. pp 36-42.thics. Cambridge, USA: Cambridge in medical decision making by sharing respsswshitr and This essay argues for a re-d J Caring Sci 2008: 22:128-1a5e in medical ians should offer patients the opportunity to participate l dec io Rematkinal autonomy active engagement. Clinicians should understand that merely pressuring patients to decide certain treatment ideration of family options could have negative psychosocial consequences if interests can be integral in promoting patients'overall agency the patient does not wish to be the final decision maker. 12 Asch DA, Hansen-Flaschen J PN. Decisions to limit or Doctors cannot substitute their judgments about what is Med1995:151:288-292. important for patients to know for the patients'own m. In: Zalta EN, editor. The Stanford encyclopedia of htiisspay.Wainiter/2005ed.http:/plato.stanford.edu/archives/win200/ a doctor needs to specifically ask patients and/or their 14 Siegler M Metaphors and models of doctor-patient relationship. In: Childress families to assess individual patient preferences in order 1997pp.44- Copyright Lippincott Williams wilkins Unauthorized reproduction of this article is prohibited
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. concerns regarding their situation at hand. In cases in which it is clear that the patient would like to be free of familial influence, clinicians could discuss various ways to support his/her interests without creating more familial animosity. Since professionals are usually unfamiliar with their patients’ relational history and family dynamics, it is more important for them to follow their patients’ own assessment and expressed wishes rather than to authoritatively ‘free’ them from their families [11]. On the contrary, given that physician paternalism is also seen in many countries [16 ,19] and numerous patients are treated in multicultural urban societies, it can be expected that significant differences regarding the role of individuals or families as decision makers will be found between patients and healthcare providers. The incompatibility of values between patients and healthcare providers and the judgments they support may result in incompatible bioethical claims. Consequently, those engaged in these substantive moral controversies who assess what is at stake, separated by incommensurable moral–metaphysical frameworks, and attempt to resolve such controversies by sound rational argument will be characterized by begging the question, arguing in circles, or engaging in infinite regress [29]. However, healthcare organizations will seek to appropriately tailor health promotion programs in order to improve understanding of the range and distribution of preferences within populations. Thus, it has been increasingly emphasized that merely pressuring patients to decide a treatment option could have negative psychosocial consequences, if the patient does not wish to be the final decision maker; physicians should ‘sound out’ patients’ preferences in this regard to find means for a peaceable collaboration that does not require stakeholders to abandon their moral commitments or compromise their moral integrity; this will require conscience clauses that recognize the existence of moral disparities and accept different assumptions. Conclusion Throughout this review, we have emphasized that physicians should offer patients the opportunity to participate in medical decision making by sharing responsibility and active engagement. Clinicians should understand that merely pressuring patients to decide certain treatment options could have negative psychosocial consequences if the patient does not wish to be the final decision maker. Doctors cannot substitute their judgments about what is important for patients to know for the patients’ own judgments. A doctor needs to specifically ask patients and/or their families to assess individual patient preferences in order to provide individualized care. When the patient or family agrees to receive the information and make a decision, clinicians should ensure that informational needs are met and should minimize the potential influences of internal and external factors to the best of their ability. Finally, understanding the range and distribution of preferences within populations is important to healthcare organizations seeking to appropriately tailor health promotion programs. Acknowledgements The authors appreciate the helpful suggestions of Dr Juan A. Rull in the preparation of the manuscript. References and recommended reading Papers of particular interest, published within the annual period of review, have been highlighted as: of special interest of outstanding interest Additional references related to this topic can also be found in the Current World Literature section in this issue (pp. 730–731). 1 Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford: Oxford University Press; 2001. 2 Tuckett AG. On paternalism, autonomy and best interests: telling the (competent) aged-care resident what they want to know. Int J Nurs Pract 2006; 12:166–173. 3 Dykeman MJ, Dewhirst K. Voluntariness. In: Singer PA, Viens AM, editors. The Cambridge textbook of bioethics. Cambridge, USA: Cambridge University Press; 2008. pp. 31–35. 4 Charles CA, Whelan T, Gafni A, et al. Shared treatment decision making: what does it mean to physicians? J Clin Oncol 2003; 21:932–936. 5 Murray E, Pollack L, White M, Lo B. Clinical decision-making: patients’ preferences and experiences. Patient Educ Couns 2007; 65:189–196. A large cross-sectional survey conducted among the American public using computer-assisted telephone interviewing. It found a diversity of responses regarding preferred approach. The main findings are that 62% of respondents preferred shared decision making, 28% preferred informed approach, and 9% preferred paternalism. 6 Butow PN, Maclean M, Dunn SM, et al. The dynamics of change: cancer patients’ preferences for information, involvement and support. Ann Oncol 1997; 8:857–863. 7 Mazur DJ, Hickam DH. Patients’ preferences for risk disclosure and role in decision making for invasive medical procedures. J Gen Intern Med 1997; 12:114–117. 8 Schattner A. What do patients really want to know? QJM 2002; 95:135– 136. 9 Sekimoto M, Asai A, Ohnishi M, et al. Patients’ preferences for involvement in treatment decision making in Japan. BMC Fam Pract 2004; 5:1. 10 Hebert PC, Hoffmaster B, Glass KC. Truth telling. In: Singer PA, Viens AM, editors. The Cambridge textbook of bioethics. Cambridge, USA: Cambridge University Press; 2008. pp. 36–42. 11 Ho A. Relational autonomy or undue pressure? Family’s role in medical decision-making. Scand J Caring Sci 2008; 22:128–135. This essay argues for a re-examination of the notions of autonomy and undue pressure in the contexts of patienthood and relational identity. In particular, it examines the characteristics of families and their role in adult patients’ decision making. This paper argues that family involvement and consideration of family interests can be integral in promoting patients’ overall agency. 12 Asch DA, Hansen-Flaschen J, Lanken PN. Decisions to limit or continue lifesustaining treatment by critical care physicians in the United States: conflicts between physicians’ practices and patients’ wishes. Am J Respir Crit Care Med 1995; 151:288–292. 13 Dworkin, G. Paternalism. In: Zalta EN, editor. The Stanford encyclopedia of philosophy. Winter 2005 ed. http://plato.stanford.edu/archives/win2005/ entries/paternalism/. 14 Siegler M. Metaphors and models of doctor–patient relationship. In: Childress JF, editor. Practical reasoning in bioethics. Indiana: Indiana University Press; 1997. pp. 44–56. 712 Ethical, legal and organizational issues in the ICU
Medical decision making Rodriguez-Osorio and Dominguez-Cherit 713 15 Levinson W, Kao A, Kuby A, Thisted RA Not all patients want to participate in 21 Azoulay E, Pochard F. Communication with family members of patients dying ng. A national study of public preferences. J Gen Intern Med in the intensive care unit. Curr Opin Crit Care 2003: 9: 545-55 05;20:531-53 2 Berger J, DeRenzo EG, Schwartz J Surrogate decision making: reconciling treatment-related decision-making: a qualitative study. BMc In th veen normative standards for pat ication of end-of-life decisions uni iive Care Med2005;31:1215-1221 17 Adams R, Smith BJ, Ruffin RE Patient preferences for autonomy in decision 24 Levin PD, Sprung CI making in asthma management. Thorax 2001: 56 126-132 18 Fraenkel L, Bogardus S, Concato J, Felson D. Preference for disclosure of Cambridge University Press; 2008. pp. 462-466 ong patients with rheumatoid arthritis. Arthritis Rheum 2001: 25 Co 45:136-13 Coppnlt for in tencskers cn re ese arch?g ate s zoo1 magers pr-gire accurat 9 Asghan F, Mirzazadeh A, Fotouhi A Patients' preferences for receiving clinical 26 Ciroldi M. Cariou A, Adrie C. et al Abil nformation and participating in decision-making in Iran. J Med Ethics 2008 consent to critical care research. Intensive Care Med 2007: 33: 807-8 34:348-352 27 Azoulay E, Pochard F, Chevret S, et al. Half the family members of intensive B ces and experiences. BMC Fam Pract 2007: 8 study in 78 French intensive care units. Crit Care Med 2004; 32: 1832-1838 Ins ict in the care of patients with rolonged stay in the ICU: types, sources, and predictors. Intensive Care Med 003:29:1489-149 sharing decision making with their patients, with the remaining one quarter almost 29 Engelhardt HT Jr Critical care: why there is no global bioethics. Curr Opin Crit qually divided between the paternalist and consumerist approaches Care2005;11:605-609 Copyright Lippincott Williams wilkins Unauthorized reproduction of this article is prohibited
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. 15 Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005; 20:531–535. 16 Watanabe Y, Takahashi M, Kai I. Japanese cancer patient participation in and satisfaction with treatment-related decision-making: a qualitative study. BMC Public Health 2008; 8:77. This study revealed that Japanese cancer patients’ preferences regarding their role in treatment-related decision making varied widely from complete physician control to complete patient control. 17 Adams RJ, Smith BJ, Ruffin RE. Patient preferences for autonomy in decision making in asthma management. Thorax 2001; 56:126–132. 18 Fraenkel L, Bogardus S, Concato J, Felson D. Preference for disclosure of information among patients with rheumatoid arthritis. Arthritis Rheum 2001; 45:136–139. 19 Asghari F, Mirzazadeh A, Fotouhi A. Patients’ preferences for receiving clinical information and participating in decision-making in Iran. J Med Ethics 2008; 34:348–352. 20 Murray E, Pollack L, White M, Lo B. Clinical decision-making: physicians’ preferences and experiences. BMC Fam Pract 2007; 8:10. Cross-sectional survey of a nationally representative sample of US physicians. It showed the first data from a large nationally representative sample of physicians to explore physician perceptions of their preferred and perceived role in clinical decision making. The main findings are that three quarters of physicians prefer sharing decision making with their patients, with the remaining one quarter almost equally divided between the paternalist and consumerist approaches. 21 Azoulay E, Pochard F. Communication with family members of patients dying in the intensive care unit. Curr Opin Crit Care 2003; 9:545–550. 22 Berger JT, DeRenzo EG, Schwartz J. Surrogate decision making: reconciling ethical theory and clinical practice. Ann Intern Med 2008; 149:48–53. In this article, the authors outline differences between normative standards for decision making and empirical evidence of practice and offer clinicians ways in which the two can be reconciled for the patient’s benefit. 23 Cohen S, Sprung C, Sjokvist P, et al. Communication of end-of-life decisions in European intensive care units. Intensive Care Med 2005; 31:1215–1221. 24 Levin PD, Sprung CL. Critical and intensive care ethics. In: Singer PA, Viens AM, editors. The Cambridge textbook of bioethics. Cambridge, USA: Cambridge University Press; 2008. pp. 462–468. 25 Coppolino M, Ackerson L. Do surrogate decision makers provide accurate consent for intensive care research? Chest 2001; 119:603–612. 26 Ciroldi M, Cariou A, Adrie C, et al. Ability of family members to predict patient’s consent to critical care research. Intensive Care Med 2007; 33:807–813. 27 Azoulay E, Pochard F, Chevret S, et al. Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units. Crit Care Med 2004; 32:1832–1838. 28 Studdert DM, Mello MM, Burns JP, et al. Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors. Intensive Care Med 2003; 29:1489–1497. 29 Engelhardt HT Jr. Critical care: why there is no global bioethics. Curr Opin Crit Care 2005; 11:605–609. Medical decision making Rodriguez-Osorio and Dominguez-Cherit 713