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Toward operationalizing an advocacy role
©R][G]INAL ARTICLES Toward Operationalizing an Advocacy Role SHEILA C O R C O R A N ,
Although patient advocacy has become a slogan for nursing, it has not been thoroughly operationalized. This article combines Gadow's model of ethical decision making and a decision theory model for structuring decision problems in order to operationalize one aspect of an advocacy role, that of helping another person to decide. An example is provided to illustrate implementation of this aspect of advocacy. (Key words: Advocacy; Autonomy; Decision analysis, ethical decision making; Informed consent) J Prof Nurs 4:242.248, 1988. © 1988 by W.B. Saunders Company. EFERENCES :TO THE ROLE of patient advocate have pervaded the nursing literature. In a recent review of the historical evolution of this role, Nelson traced three major themes: nurse as actor for or on behalf of another, nurse as mediator, and nurse as protector of clients' self-determination, l In many respects the concept of advocacy has become a slogan for nursing, a rallying point, in that nurses often accept t h e concept as an ideal which characterizes nursing, but without further analysis of its theoretical or practical implications. Although the term has been conceptuaIly developed and occasionally critiqued in the literature, it has not been thoroughly operationalized. In this article, advocacy is defined in terms of helping patients to be autonomous, informed decision makers. Gadow's model of ethical decision making is merged with a decision theory model for structuring decision problems to guide operationalization of one aspect of an advocacy role, that of helping another person to decide.
R
Concept of Advocacy In 1984, Winslow critiqued two contrasting metaphors for nursing3 The first, a military metaphor * Associate Professor, School of Nursing, University of glinnesota, Minneapolis Address correspondenceand reprint requests to Dr Corcoran: School of Nursing, Universityof Minnesota, 6-101 Unit F, 308 " Harvard St, Minneapolis, giN 55455. © 1988 by W.B. Saunders Company. 8755-7233/88/0404-000953.00/0 242
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based on the concept of loyalty, was used in the 19th and early 20th century to convey the image of nurses battling diseases, obeying those of "higher rank," and submitting to strict disciplinary regulations. The second, a legal metaphor based on the concept of advocacy, appeared in the early 1970s and conveyed an image of nurses as defenders of patients' rights, assurers of quality health care, and symbols of liaison between patients and other health professionals. However, neither metaphor represents nursing adequately. Two nursing authors, Curtin and Gadow, have described advocacy as the philosophical foundation of nursing. 3,4 Both authors distinguished the philosophical concept of advocacy from the interpretation of consumer advocate often associated with the patients' rights movement. Gadow also differentiated advocacy from paternalism. 4 Individuals who have a consumerism perspective of an advocacy role represent nurses as "consumer guides" who provide necessary information to patients and then discreetly withdraw to allow the patients to make their decisions privately. These nurses act as technical advisors or trouble shooters, with little desire to shoulder the responsibility of decision making. In contrast, those who have a paternalistic perspective of the role depict nurses, or other persons in positions of influence, as using coercion to provide a " g o o d " that the intended beneficiaries do not want. 4 While the intent is to obtain what is believed to be good for the other persons, the effect may be to violate their known wishes and their rights to self-determination. In contrast to these two perspectives, Gadow defined existential advocacy as a nurse participating with a patient to determine the unique meaning the experiel~ce of health, illness, suffering, or dying is to have for that individual; the ideal is for that person to be assisted by a nurse to authentically exercise his/her self-determination. 4 Both Curtin and Gadow described advocacy in terms of a philosophical ideal of nursing as based on nurse-patient relationships that involve nurses and patients as whole, unique persons
Journal of ProfessionalNursing, Vol
4, No 4 (July-August), 1988: pp 242-248
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and on nurses' and patients' concern for patients' rights to self-determination. 3'4 Patients are recognized and respected as unique individuals in their entirety, and nurses participate in the decision-making process as whole persons. In this respect, Gadow pointed out that individuals, both patients and nurses, express their wholeness and uniqueness as human beings by examining and clarifying their values in the context of the present situation. 4 Within this perspective, the best interests of the patient are determined primarily by the patient, not by nurses or other professionals. This perspective of advocacy is intimately connected to autonomy and informed decision making. Beauchamp and Childress believe that a person is autonomous only if she or he is self-governing. 5 Consequently, autonomous persons determine their own courses of action in accordance with plans they choose themselves. They deliberate, choose, and are capable of acting on the basis of such deliberations. Young presents.a similar positive view of autonomy, defining it as "authoring one's own life without being subject to the will of others. ''6 Young believes that freedom is only one necessary condition for autonomy; other are rationality, strength of will, and self-awareness. Protecting patients' autonomy in health care, therefore, involves assuring that they have the information needed to make informed decisions, including decisions about diagnostic and treatment measures others will perform on their behalf. Beauchamp and Childress link the concept of autonomy to that of informed consent. This link becomes particularly relevant when a patient is asked to decide about a risky diagnostic or treatment measure or to participate in research. Accordingly, they specify four necessary conditions for informed, valid consent: disclosure of information, comprehension of information, voluntary consent, and competence to consent. 5 The focus of this article is on helping another person to decide, which is one aspect of advocacy. It is based on the concept of advocacy as developed by Curtin and'Gadow and incorporates the information elements of informed consent described by Beauchamp and Childress. Assisting a Patient in Deciding
Informed decision making requires relevant information on which to base the decision. However, helping someone else make decisions is not easy. What information does the person need or want?
Where does a nurse obtain the information? Who should provide the information? When should it be provided? How can the information be used? All are important questions that need to be considered. If nurses provided all possible information, they might overwhelm patients and inhibit, rather than promote, informed decision making. Yet providing too little information can be viewed as paternalistic or even negligent behavior and can prevent patients ' authentic self-determination. How do nurses decide the type and amount of information to provide? Gadow's model outlines steps for promoting patient involvement in decision making, while decision theory adds specification of relevant types of information. The five steps identified by Gadow are: (1) Insuring the possibility of self-determination by assuring that the patient has relevant information; (2) developing an advocacy relationship between nurse and patient by enabling the patient to determine the selection of information; (3) disclosing the nurse's views as part of the relevant information; (4) helping the patient determine her/his own values; and (5) helping the patient determine freely the meaning that health, illness, or dying is to have. 7 Elaboration of these five steps for promoting patient involvement is presented in the following sections. Included is a specific case to illustrate a nurse in an advocacy role helping a patient exercise his or her freedom of self-determination. STEP ONE: ASSURING RELEVANT INFORMATION
One difficulty in the first step is identifying what is relevant information. Although Gadow does not elaborate on that point, decision theory provides guidance for determining relevant types of information. In particular, decision analysis, a methodology for choosing among mutually exclusive alternative actions, provides a structure for depicting the relationship between actions and their possible outcomes, s'9 Such a structure distinguishes the following types of information needed to make decisions: (1) options or altern:rtive actions; (2) chance events associated with each option (events controlled by change, not by the decision maker); (3) the probabilities (likelihoods) that the chance events will occur; (4) outcomes that may result from implementation of each option; and (5) the values assigned to the outcomes. These types of information often are represented in the form of a decision tree. In this article only the structure of decision analysis is included; that is, the decision tree which represents the options, chance events, outcomes, and values. Decision analysis also provides a
244
SHEILA
are the probabilities that each chance event will occur in her case and the values of the outcomes for her. For example, what is the likelihood that she will prevent osteoporosis and/or develop endometrial cancer if she does or does not take estrogen? And, what are her preferences for the consequences of the options?
procedure for mathematically combining probabilities and values. See references by Raiffa ~ and Corcoran9 for more extensive descriptions. Mona Jackson is experiencing menopause and is facing a decision about estrogen replacement therapy. She indicates to Sarah Coyne, the nurse working with her, that she has little information related to this decision and would like Sarah to help her. Sarah, aware of Gadow's model and decision analysis structure, considers the information Mona might need. She identifies the options as: (1) taking estrogen, (2) taking estrogen and a progestin, and (3) raking no hormones. The relevant events controlled by chance in relation to each option for which Mona might require information include: (1)restoration of hormonal balance; (2) risks of possible occurrences of osteoporosis, endometrial cancer, breast cancer, and/ or thromboembolic disease, and (3) risk of death.~° The outcomes related to each option about which Mona might need information include: (1) relief of menopausal symptoms; (2) bone fractures as a result of osteoporosis; (3) discomfort, anxiety, and cost associated with diagnosis and treatment of cancer; and (4) possible death.°These options, chance events, and outcomes are represented in the decision tree in Fig 1. Two other types of information Mona might want
Illustration.
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Since patients often are unaware of the alternatives available to them, the structure provided by decision analysis can be useful when assisting them with decision making because it allows speciGcation of the options. For examlSle, in the case just presented, identification of the three options makes it evident that the decision is not merely taking or not taking hormones, but there are options concerning types of hormones. Also, it is helpful to differentiate chance events and outcomes. Chance events are states o f nature not controlled by the decision maker but affecting the outc o m e s a l o n g w i t h the o p t i o n s . For e x a m p l e , in Mona's case the occurrence of osteoporosis is a chance event and fractures associated with the osteoporosis are possible outcomes. It is important for Mona to understand that osteoporosis may occur with any of the options but is less likely with some options than
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Figure I.
CORCORAN
Portions of a decision tree for choosing treatment for menopausal symptoms.
ADVOCACY ROLE
with others. This understanding of chance events is important so she will not feel totally responsible for all outcomes because of the decision she makes. T h e distinction between probabilities and values is also an important feature of decision analysis. Information about the likelihood that an event will occur is a different type of information from the value or worth associated with outcomes. For example, the likelihood of osteoporosis may be much greater than the likelihobd of cancer in Mona's case, but she may prefer the risk of broken bones associated with osteoporosis to the consequence of having cancer. Also, the sources of such information often differ. In most health care situations, health professionals are the primary source of probability information, whereas patients are a primary source of values. W h i l e decision theory provides some guidance concerning types of information to share, it does have limitations. For example, decision theory focuses on the consequences of actions as the basis for choosing the best alternative, but does not address the goodness of the alternatives being considered. I f there are concerns about the goodness or rightness of the options themselves, regardl6ss of consequences, they should be discussed. In addition, a decision tree that represents all options, chance events, and outcomes for a given choice situation is usually too complex and cumbersome to be useful. Therefore, the three must be carefully pruned so that significant information is not excluded. Nurses or other health professionals can subtly manipulate patients' decisions by the information that is or is not provided. This point is directly related to the next step in Gadow's model. STEP TWO: ENABLING THE PATIENT TO SELECT INFORMATION
Gadow's second step enables patients to select the amount and types of information desired.7 But is that realistic? Do most patients know What information is available and what information they w a n t or need? Often they do not. Therefore, nurses should not wait for patients to ask for information, but should offer assistance ir~ this process. Gadow suggests that nurses m i g h t encourage patients to seek information by either asking if more information a b o u t particular aspects such as options and possible outcomes would be helpful, or by stating that, in their experience, they have often found that patients want to know about such things as~option s and possible outcomes before making decisions. Offering to develop a decision flow diagram with patients could help them determine what and how much information they want.
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Illustration. Sara, the nurse, meets with Mona to clarify what information she desires. Sara does this by briefly describing the types of information other persons facing the same decision have found helpful, including options, chance events, and outcomes, as well as probabilities and values. She also indicates that she is willing to share her own views and preferences if that will help Mona examine values related to her decision. Mona indicates that initially she would like more information about what options are available for her and about chances of symptom relief, osteoporosis, and endometrial cancer. She states that she is hesitant to interfere with a normal physiological process, but that her menopausal symptoms have been disturbing to her, and there is a family history of osteoporosis. Also, she has heard about the risks of endometrial cancer with hormone therapy. She asks for help in considering these factors. Sara indicates that it might be helpful to represent the decision task in a diagram. Mona indicates that she would like that; she says she often uses charts and illustrations to represent difficult decisions. Therefore, Sara works with Mona to develop a decision tree which graphically demonstrates the interrelationships among the options, chance events, and outcomes of concern to Mona. (See Fig 1--Fig 1 is a complex decision tree, but it includes the three options and the chance events of concern to Mona. It could be simplified if a patient has difficulty comprehending such a complex tree. See the Raiffa book for suggestions about "pruning a decision tree."8) Sara indicates that she does not have specific probability data about the likelihood of chance events to place on the tree, but that she can get them from the literature and from colleagues; Mona states that she prefers rough estimates of likelihoods. After reading relevant literature and consulting with several colleagues and Mona's gynecologist, Sara tells Mona that according to current knowledge, the Use of estrogen has positive clinical effects in relieving menopausal symptoms; such as hot flashes, and in preventing osteoporosis; however, there is: a-higher probability of developing endometrial cancer with estrogen therapy than if no hormone therapy is used.~l Also, she tells Mona that there is evidence that addition of progestin to estrogen therapy reduces the risk of endometrial cancer to the same level as untreated women. Next, Sara checks Mona's comprehension of the information by asking her to describe the tree in her own words. Mona correctly interprets all the information. An important point related to this second step was made by Yarling, who stated that patients have moral rights to necessary information but do not have moral obligations to seek the information. ~2 T h e y can ch.oose to seek or not to s e e k t h e information to which they have a right. From another perspective, Suzanne tsiiller's research shows that some patients cope better with little information about threatening events,
246
SHEILA CORCORAN
while others cope better with much information. 13 Therefore, individual assessment of a patient's desire to know is necessary in implementing an advocacy role. At the same time, Yarling points out that if patients exercise their moral right to know, then nurses and other health professionals have corresponding moral obligations to provide the information. 12 He further clarifies these obligations by specifying that a professional person's moral right to disclose or share information is determined by three factors: (1) possession of the necessary knowledge and communication skills to make the disclosure competently, (2) collaboration and communication with colleagues who are working with the patient, and (3) rapport with the patient. Although Yarling is referring to disclosure of information related to terminal illness, the corresponding rights and obligations also apply to other situations. In the case presented, Mona identified specific types of information she desired. The fact that she asked Sarah for the information implied rapport between them. Yarling's second factor, collaboration and communication with colleagues, is also worth elaboration in relation to an advocacy role, because when nurses provide information about options, consequences, and values, they may encounter professional risks. While nurses usually function within the context of a health care team, their authority within the team and institutional bureaucracy is sometimes viewed as limited. The Tuma case exemplifies corresponding risks that may be encountered.~4 At the request of a patient, Jolene Tuma shared information about alternatives to cancer chemotherapy. The physician then sued for interference with the doctor-patient relationship, and Tuma lost her job and license to practice nursing. (Her license was later restored by the Idaho Supreme Court.) Nurses assuming an advocacy role should be aware of such risks. At times these risks can be minimized by collaborating and communicating with other professionals involved in the patient's care. However, the integrity of the health care team does not override a patient's moral right to know. Yarling indicates that health professionals who meet his three qualifications have the moral right and the moral obligation to provide requested information, even if the institutional policies and/or legal statutes do not support such actions. ~2 )
STEP THREE: DISCLOSING NURSE'S VIEW
Returning again to Gadow's model, step 3 emphasizes the importance of the nurse sharing her/his view
and preferences. This is a type of information to be considered in addition to those areas specified by decision theory. 7 The purpose of disclosing the nurse's view in step 3 is not to persuade or merely inform, but rather to assist in clarifying the patient's values. Gadow indicates that by sharing personal values and viewpoints, the nurse participates as a whole person instead of adopting the traditional professional practice of withholding such information. Also, by expressing her/his view about the rightness of alternatives and/or the'balance of risks and benefits in a situation, a nurse can convey a concern for looking at all aspects and for articulating values. After pondering the decision tree for a few minutes, Mona asks Sara what she would choose if she were to make the decision. Sarah indicates that she, too, values normal processes, but is not reluctant to take hormones to relieve symptoms. She shares her personal view that in comparing the benefits of symptom relief with the risk of morbidity and mortality, she believes that the benefits of estrogen with progestin treatment outweigh the risks in this case. Mona thanks Sara for sharing the information and her own viewpoint. Sara emphasizes that Mona is the decision maker and that other's views and values are additional information for her to consider. lllustratian.
Gadow does not elaborate on when and how nurses should share their values. The assumption seems to be that if one is authentic and truly promoting patients' self-determination, one will know how and when to do so. However, several cautions seem warranted. First, regarding values, as with other types of relevant information, the patient should determine the selection of information. Therefore, a nurse should be attentive to direct or indirect indications that a patient wants such information. In the illustration, Sarah had no difficulty in deciding whether or not to share her views and values because Mona asked her directly'. Also, the nurse should recognize nurses' and patients' unequal positions of power within the typical health care bureaucracy. Nurses' values and opinions shared from a relative position of power may have persuasive or even coercive force, despite the intent. Therefore, the manner in which such information is communicated can make a significant difference in whether the patient perceives it as additional information and an invi~tion to explore values, or as an attempt to persuade. STEP FOUR: HELPING PATIENTS DETERMINE THEIR OWN VALUES
Gadow's fourth step enables the patient to determine her/his own vaIues related to the decision situation. The values may concern the risks and benefits of
ADVOCACY ROLE
247
the consequences of the options or may concern the options themselves. Illustration. Mona carefully examines the decision tree again and states that is is helpful to see the information this way. She indicates that the tree and Sara's sharing of her views have helped her clarify her own values and conflicts. She repeats an earlier statement that-she was not sure she wanted a medical intervention in a normal process. At the same time she experiences a conflict because of her desire to avoid the menopausal symptoms and the risk of osteoporosis. However, she also was concerned about the risk of cancer. Now she is feeling better about the possibility of controlling both the symptoms and the chance of osteoporosis, and her concern about cancer is diminished by the information. She indicates that she thinks she will choose hormone therapy, including estrogen and progestin, but that she would like "to sleep on it." Sara reinforces that the decision is Mona's to make and that she should take the time she needs. STEP FIVE: ASSISTING PATIENT TO DETERMINE MEANING
Gadow's fifth step of helping a patient clarify the personal meaning of the situation is included to promote patient individuality. Through this approach the patient not only has self-determination about the decision, but also about the personal meaning of the particular life experience. Illustration. Sara indicates that this decision-making situation also provides an opportunity for further reflection, if Mona would like to do so. Mona agrees. They discuss what meaning the experience of menopause has for Mona and how the decision she just made reflects her view of herself. She states that experiencing menopause has caused her to think about her sexuality. The ending of her childbearing ability is not distressing to her, even though she has no children. She feels that she is entering a new phase of her life and hopes to approach it as a challenge. Also, she feels good about her decision concerning estrogen replacement therapy. She has learned more about her body and feels in control of decisions about her body. She thanks Sara for helping her through this decisionmaking process. In this instance, Sara has implemented an advocacy role to help Mona decide and speak for herself.
Summary
Although advocacy is frequently emphasized in nursing, it is often used more as a slogan than as a true role to be put into practice. Implementing an advocacy role is difficult and sometimes threatening, because it promotes patients' self-determination, and because the professional's associated moral rights and
obligations may not be compatible with institutional policies or legal regulations. This article merges Gadow's model of ethical decision making and a decision theory model for structuring decision problems to guide operationalization of one aspect of an advocacy role, that of assisting another person to decide. This approach identified types of information that might be needed for informed decision making, including: (1) possible options, (2) chance events~associated with each option, (3) probabilities of chance events occurring, (4) possible outcomes of each option, and (5) patients' and nurses' values concerning options and outcomes. Important aspects of this operationalization were identified, including: (1) the patient's determination of the types and amount of information to be selected, (2) p a r t i c i p a t i o n of the p a t i e n t and nurse as whole persons, and (3) reflection on the meaning of the situation for the patient. If advocacy is the philosophical foundation of nursing, then appropriate methods for implementing it need to be developed and tested. The combined model presented in this article is intende d as a guide, not a prescription, for operationalizing one aspect of an advocacy role, that of helping another person to decide. Although guidelines are useful, the art of knowing how and when to implement them is vital to truly professional practice. It requires knowledge, skill, and courage. Nurses are encouraged to test and refine this model and to develop additional guidelines for other aspects of this role.
References
1. Nelson M: Advocacy in nursing: A concept in evolution. Nurs Outlook 36:136-141,1988 2. Winslow G: From loyalty to advocacy: A new metaphor for nursing. Hastings Cent Rep 7:32-40, 1984 3. Curtin L: The nurse as advocate: A philosophical foundation for nursing. Adv Nuts Sci t(3): 1-10, 1979 4. Gadow S: Existential advocacy: Philosophical foundation of nursing, in Spickes S, Gadow S (eds): Nursing: Imageg and Ideals. New York, Springer-Verlag, 1980, pp 79-101 5. Beauchamp T, Childress A: Principles of Biomedical Ethics, ed 2. New York, Oxford, 1983, p 61 6. Young t~Personal Autonomy: Beyond Negative and Positive Liberty. New York, St Martin's, 1986, p 19 7. Gadow S: A model for ethical decision making. Oncol Nurs Forum 7(3):44-47, 1980 8. Raiffa H: Decision Analysis: Introductory Lectures on Choice Under Uncertainty. Menlo Park, CA, AddisonWesley, 1968 9. Corcoran S: Decision analysis: A step-by-step guide for making clinical decisions. Nurs Health Care 7:149154, 1986
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10. Holzman G, Ravitch M, Metheny W, et al: Physician's judgments about estrogen replacement therapy for menopausal women. Obstet Gynecol 63:303-311, 1984 11. Rothert M: Women's Judgments of Estrogen Replacement Therapy. Proposal for Grant # 1 R01 NR01245-01A1 by the National Center for Nursing Research, 1986 12. Yarling R: Ethical analysis of a nursing problem:
SHEILACORCORAN
The scope of nursing practice in disclosing the truth to terminal patients, Part II. Supervisor Nurse 9(6):28-34, 1978 13. Miller.S: Predictability and human stress: Toward a clarification of evidence and theory. Adv Exp Social Psychol 14:203-255, 1981 14. Tuma J: Professional misconduct? Nurs Outlook 25:546, 1977 (letter)
Although patient advocacy has become a slogan for nursing, it has not been thoroughly operationalized. This article combines Gadow's model of ethical decision making and a decision theory model for structuring decision problems in order to operationalize one aspect of an advocacy role, that of helping another person to decide. An example is provided to illustrate implementation of this aspect of advocacy. (Key words: Advocacy; Autonomy; Decision analysis, ethical decision making; Informed consent) J Prof Nurs 4:242.248, 1988. © 1988 by W.B. Saunders Company. EFERENCES :TO THE ROLE of patient advocate have pervaded the nursing literature. In a recent review of the historical evolution of this role, Nelson traced three major themes: nurse as actor for or on behalf of another, nurse as mediator, and nurse as protector of clients' self-determination, l In many respects the concept of advocacy has become a slogan for nursing, a rallying point, in that nurses often accept t h e concept as an ideal which characterizes nursing, but without further analysis of its theoretical or practical implications. Although the term has been conceptuaIly developed and occasionally critiqued in the literature, it has not been thoroughly operationalized. In this article, advocacy is defined in terms of helping patients to be autonomous, informed decision makers. Gadow's model of ethical decision making is merged with a decision theory model for structuring decision problems to guide operationalization of one aspect of an advocacy role, that of helping another person to decide.
R
Concept of Advocacy In 1984, Winslow critiqued two contrasting metaphors for nursing3 The first, a military metaphor * Associate Professor, School of Nursing, University of glinnesota, Minneapolis Address correspondenceand reprint requests to Dr Corcoran: School of Nursing, Universityof Minnesota, 6-101 Unit F, 308 " Harvard St, Minneapolis, giN 55455. © 1988 by W.B. Saunders Company. 8755-7233/88/0404-000953.00/0 242
PHD, R N *
based on the concept of loyalty, was used in the 19th and early 20th century to convey the image of nurses battling diseases, obeying those of "higher rank," and submitting to strict disciplinary regulations. The second, a legal metaphor based on the concept of advocacy, appeared in the early 1970s and conveyed an image of nurses as defenders of patients' rights, assurers of quality health care, and symbols of liaison between patients and other health professionals. However, neither metaphor represents nursing adequately. Two nursing authors, Curtin and Gadow, have described advocacy as the philosophical foundation of nursing. 3,4 Both authors distinguished the philosophical concept of advocacy from the interpretation of consumer advocate often associated with the patients' rights movement. Gadow also differentiated advocacy from paternalism. 4 Individuals who have a consumerism perspective of an advocacy role represent nurses as "consumer guides" who provide necessary information to patients and then discreetly withdraw to allow the patients to make their decisions privately. These nurses act as technical advisors or trouble shooters, with little desire to shoulder the responsibility of decision making. In contrast, those who have a paternalistic perspective of the role depict nurses, or other persons in positions of influence, as using coercion to provide a " g o o d " that the intended beneficiaries do not want. 4 While the intent is to obtain what is believed to be good for the other persons, the effect may be to violate their known wishes and their rights to self-determination. In contrast to these two perspectives, Gadow defined existential advocacy as a nurse participating with a patient to determine the unique meaning the experiel~ce of health, illness, suffering, or dying is to have for that individual; the ideal is for that person to be assisted by a nurse to authentically exercise his/her self-determination. 4 Both Curtin and Gadow described advocacy in terms of a philosophical ideal of nursing as based on nurse-patient relationships that involve nurses and patients as whole, unique persons
Journal of ProfessionalNursing, Vol
4, No 4 (July-August), 1988: pp 242-248
243
ADVOCACY ROLE
and on nurses' and patients' concern for patients' rights to self-determination. 3'4 Patients are recognized and respected as unique individuals in their entirety, and nurses participate in the decision-making process as whole persons. In this respect, Gadow pointed out that individuals, both patients and nurses, express their wholeness and uniqueness as human beings by examining and clarifying their values in the context of the present situation. 4 Within this perspective, the best interests of the patient are determined primarily by the patient, not by nurses or other professionals. This perspective of advocacy is intimately connected to autonomy and informed decision making. Beauchamp and Childress believe that a person is autonomous only if she or he is self-governing. 5 Consequently, autonomous persons determine their own courses of action in accordance with plans they choose themselves. They deliberate, choose, and are capable of acting on the basis of such deliberations. Young presents.a similar positive view of autonomy, defining it as "authoring one's own life without being subject to the will of others. ''6 Young believes that freedom is only one necessary condition for autonomy; other are rationality, strength of will, and self-awareness. Protecting patients' autonomy in health care, therefore, involves assuring that they have the information needed to make informed decisions, including decisions about diagnostic and treatment measures others will perform on their behalf. Beauchamp and Childress link the concept of autonomy to that of informed consent. This link becomes particularly relevant when a patient is asked to decide about a risky diagnostic or treatment measure or to participate in research. Accordingly, they specify four necessary conditions for informed, valid consent: disclosure of information, comprehension of information, voluntary consent, and competence to consent. 5 The focus of this article is on helping another person to decide, which is one aspect of advocacy. It is based on the concept of advocacy as developed by Curtin and'Gadow and incorporates the information elements of informed consent described by Beauchamp and Childress. Assisting a Patient in Deciding
Informed decision making requires relevant information on which to base the decision. However, helping someone else make decisions is not easy. What information does the person need or want?
Where does a nurse obtain the information? Who should provide the information? When should it be provided? How can the information be used? All are important questions that need to be considered. If nurses provided all possible information, they might overwhelm patients and inhibit, rather than promote, informed decision making. Yet providing too little information can be viewed as paternalistic or even negligent behavior and can prevent patients ' authentic self-determination. How do nurses decide the type and amount of information to provide? Gadow's model outlines steps for promoting patient involvement in decision making, while decision theory adds specification of relevant types of information. The five steps identified by Gadow are: (1) Insuring the possibility of self-determination by assuring that the patient has relevant information; (2) developing an advocacy relationship between nurse and patient by enabling the patient to determine the selection of information; (3) disclosing the nurse's views as part of the relevant information; (4) helping the patient determine her/his own values; and (5) helping the patient determine freely the meaning that health, illness, or dying is to have. 7 Elaboration of these five steps for promoting patient involvement is presented in the following sections. Included is a specific case to illustrate a nurse in an advocacy role helping a patient exercise his or her freedom of self-determination. STEP ONE: ASSURING RELEVANT INFORMATION
One difficulty in the first step is identifying what is relevant information. Although Gadow does not elaborate on that point, decision theory provides guidance for determining relevant types of information. In particular, decision analysis, a methodology for choosing among mutually exclusive alternative actions, provides a structure for depicting the relationship between actions and their possible outcomes, s'9 Such a structure distinguishes the following types of information needed to make decisions: (1) options or altern:rtive actions; (2) chance events associated with each option (events controlled by change, not by the decision maker); (3) the probabilities (likelihoods) that the chance events will occur; (4) outcomes that may result from implementation of each option; and (5) the values assigned to the outcomes. These types of information often are represented in the form of a decision tree. In this article only the structure of decision analysis is included; that is, the decision tree which represents the options, chance events, outcomes, and values. Decision analysis also provides a
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are the probabilities that each chance event will occur in her case and the values of the outcomes for her. For example, what is the likelihood that she will prevent osteoporosis and/or develop endometrial cancer if she does or does not take estrogen? And, what are her preferences for the consequences of the options?
procedure for mathematically combining probabilities and values. See references by Raiffa ~ and Corcoran9 for more extensive descriptions. Mona Jackson is experiencing menopause and is facing a decision about estrogen replacement therapy. She indicates to Sarah Coyne, the nurse working with her, that she has little information related to this decision and would like Sarah to help her. Sarah, aware of Gadow's model and decision analysis structure, considers the information Mona might need. She identifies the options as: (1) taking estrogen, (2) taking estrogen and a progestin, and (3) raking no hormones. The relevant events controlled by chance in relation to each option for which Mona might require information include: (1)restoration of hormonal balance; (2) risks of possible occurrences of osteoporosis, endometrial cancer, breast cancer, and/ or thromboembolic disease, and (3) risk of death.~° The outcomes related to each option about which Mona might need information include: (1) relief of menopausal symptoms; (2) bone fractures as a result of osteoporosis; (3) discomfort, anxiety, and cost associated with diagnosis and treatment of cancer; and (4) possible death.°These options, chance events, and outcomes are represented in the decision tree in Fig 1. Two other types of information Mona might want
Illustration.
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Since patients often are unaware of the alternatives available to them, the structure provided by decision analysis can be useful when assisting them with decision making because it allows speciGcation of the options. For examlSle, in the case just presented, identification of the three options makes it evident that the decision is not merely taking or not taking hormones, but there are options concerning types of hormones. Also, it is helpful to differentiate chance events and outcomes. Chance events are states o f nature not controlled by the decision maker but affecting the outc o m e s a l o n g w i t h the o p t i o n s . For e x a m p l e , in Mona's case the occurrence of osteoporosis is a chance event and fractures associated with the osteoporosis are possible outcomes. It is important for Mona to understand that osteoporosis may occur with any of the options but is less likely with some options than
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Figure I.
CORCORAN
Portions of a decision tree for choosing treatment for menopausal symptoms.
ADVOCACY ROLE
with others. This understanding of chance events is important so she will not feel totally responsible for all outcomes because of the decision she makes. T h e distinction between probabilities and values is also an important feature of decision analysis. Information about the likelihood that an event will occur is a different type of information from the value or worth associated with outcomes. For example, the likelihood of osteoporosis may be much greater than the likelihobd of cancer in Mona's case, but she may prefer the risk of broken bones associated with osteoporosis to the consequence of having cancer. Also, the sources of such information often differ. In most health care situations, health professionals are the primary source of probability information, whereas patients are a primary source of values. W h i l e decision theory provides some guidance concerning types of information to share, it does have limitations. For example, decision theory focuses on the consequences of actions as the basis for choosing the best alternative, but does not address the goodness of the alternatives being considered. I f there are concerns about the goodness or rightness of the options themselves, regardl6ss of consequences, they should be discussed. In addition, a decision tree that represents all options, chance events, and outcomes for a given choice situation is usually too complex and cumbersome to be useful. Therefore, the three must be carefully pruned so that significant information is not excluded. Nurses or other health professionals can subtly manipulate patients' decisions by the information that is or is not provided. This point is directly related to the next step in Gadow's model. STEP TWO: ENABLING THE PATIENT TO SELECT INFORMATION
Gadow's second step enables patients to select the amount and types of information desired.7 But is that realistic? Do most patients know What information is available and what information they w a n t or need? Often they do not. Therefore, nurses should not wait for patients to ask for information, but should offer assistance ir~ this process. Gadow suggests that nurses m i g h t encourage patients to seek information by either asking if more information a b o u t particular aspects such as options and possible outcomes would be helpful, or by stating that, in their experience, they have often found that patients want to know about such things as~option s and possible outcomes before making decisions. Offering to develop a decision flow diagram with patients could help them determine what and how much information they want.
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Illustration. Sara, the nurse, meets with Mona to clarify what information she desires. Sara does this by briefly describing the types of information other persons facing the same decision have found helpful, including options, chance events, and outcomes, as well as probabilities and values. She also indicates that she is willing to share her own views and preferences if that will help Mona examine values related to her decision. Mona indicates that initially she would like more information about what options are available for her and about chances of symptom relief, osteoporosis, and endometrial cancer. She states that she is hesitant to interfere with a normal physiological process, but that her menopausal symptoms have been disturbing to her, and there is a family history of osteoporosis. Also, she has heard about the risks of endometrial cancer with hormone therapy. She asks for help in considering these factors. Sara indicates that it might be helpful to represent the decision task in a diagram. Mona indicates that she would like that; she says she often uses charts and illustrations to represent difficult decisions. Therefore, Sara works with Mona to develop a decision tree which graphically demonstrates the interrelationships among the options, chance events, and outcomes of concern to Mona. (See Fig 1--Fig 1 is a complex decision tree, but it includes the three options and the chance events of concern to Mona. It could be simplified if a patient has difficulty comprehending such a complex tree. See the Raiffa book for suggestions about "pruning a decision tree."8) Sara indicates that she does not have specific probability data about the likelihood of chance events to place on the tree, but that she can get them from the literature and from colleagues; Mona states that she prefers rough estimates of likelihoods. After reading relevant literature and consulting with several colleagues and Mona's gynecologist, Sara tells Mona that according to current knowledge, the Use of estrogen has positive clinical effects in relieving menopausal symptoms; such as hot flashes, and in preventing osteoporosis; however, there is: a-higher probability of developing endometrial cancer with estrogen therapy than if no hormone therapy is used.~l Also, she tells Mona that there is evidence that addition of progestin to estrogen therapy reduces the risk of endometrial cancer to the same level as untreated women. Next, Sara checks Mona's comprehension of the information by asking her to describe the tree in her own words. Mona correctly interprets all the information. An important point related to this second step was made by Yarling, who stated that patients have moral rights to necessary information but do not have moral obligations to seek the information. ~2 T h e y can ch.oose to seek or not to s e e k t h e information to which they have a right. From another perspective, Suzanne tsiiller's research shows that some patients cope better with little information about threatening events,
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while others cope better with much information. 13 Therefore, individual assessment of a patient's desire to know is necessary in implementing an advocacy role. At the same time, Yarling points out that if patients exercise their moral right to know, then nurses and other health professionals have corresponding moral obligations to provide the information. 12 He further clarifies these obligations by specifying that a professional person's moral right to disclose or share information is determined by three factors: (1) possession of the necessary knowledge and communication skills to make the disclosure competently, (2) collaboration and communication with colleagues who are working with the patient, and (3) rapport with the patient. Although Yarling is referring to disclosure of information related to terminal illness, the corresponding rights and obligations also apply to other situations. In the case presented, Mona identified specific types of information she desired. The fact that she asked Sarah for the information implied rapport between them. Yarling's second factor, collaboration and communication with colleagues, is also worth elaboration in relation to an advocacy role, because when nurses provide information about options, consequences, and values, they may encounter professional risks. While nurses usually function within the context of a health care team, their authority within the team and institutional bureaucracy is sometimes viewed as limited. The Tuma case exemplifies corresponding risks that may be encountered.~4 At the request of a patient, Jolene Tuma shared information about alternatives to cancer chemotherapy. The physician then sued for interference with the doctor-patient relationship, and Tuma lost her job and license to practice nursing. (Her license was later restored by the Idaho Supreme Court.) Nurses assuming an advocacy role should be aware of such risks. At times these risks can be minimized by collaborating and communicating with other professionals involved in the patient's care. However, the integrity of the health care team does not override a patient's moral right to know. Yarling indicates that health professionals who meet his three qualifications have the moral right and the moral obligation to provide requested information, even if the institutional policies and/or legal statutes do not support such actions. ~2 )
STEP THREE: DISCLOSING NURSE'S VIEW
Returning again to Gadow's model, step 3 emphasizes the importance of the nurse sharing her/his view
and preferences. This is a type of information to be considered in addition to those areas specified by decision theory. 7 The purpose of disclosing the nurse's view in step 3 is not to persuade or merely inform, but rather to assist in clarifying the patient's values. Gadow indicates that by sharing personal values and viewpoints, the nurse participates as a whole person instead of adopting the traditional professional practice of withholding such information. Also, by expressing her/his view about the rightness of alternatives and/or the'balance of risks and benefits in a situation, a nurse can convey a concern for looking at all aspects and for articulating values. After pondering the decision tree for a few minutes, Mona asks Sara what she would choose if she were to make the decision. Sarah indicates that she, too, values normal processes, but is not reluctant to take hormones to relieve symptoms. She shares her personal view that in comparing the benefits of symptom relief with the risk of morbidity and mortality, she believes that the benefits of estrogen with progestin treatment outweigh the risks in this case. Mona thanks Sara for sharing the information and her own viewpoint. Sara emphasizes that Mona is the decision maker and that other's views and values are additional information for her to consider. lllustratian.
Gadow does not elaborate on when and how nurses should share their values. The assumption seems to be that if one is authentic and truly promoting patients' self-determination, one will know how and when to do so. However, several cautions seem warranted. First, regarding values, as with other types of relevant information, the patient should determine the selection of information. Therefore, a nurse should be attentive to direct or indirect indications that a patient wants such information. In the illustration, Sarah had no difficulty in deciding whether or not to share her views and values because Mona asked her directly'. Also, the nurse should recognize nurses' and patients' unequal positions of power within the typical health care bureaucracy. Nurses' values and opinions shared from a relative position of power may have persuasive or even coercive force, despite the intent. Therefore, the manner in which such information is communicated can make a significant difference in whether the patient perceives it as additional information and an invi~tion to explore values, or as an attempt to persuade. STEP FOUR: HELPING PATIENTS DETERMINE THEIR OWN VALUES
Gadow's fourth step enables the patient to determine her/his own vaIues related to the decision situation. The values may concern the risks and benefits of
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the consequences of the options or may concern the options themselves. Illustration. Mona carefully examines the decision tree again and states that is is helpful to see the information this way. She indicates that the tree and Sara's sharing of her views have helped her clarify her own values and conflicts. She repeats an earlier statement that-she was not sure she wanted a medical intervention in a normal process. At the same time she experiences a conflict because of her desire to avoid the menopausal symptoms and the risk of osteoporosis. However, she also was concerned about the risk of cancer. Now she is feeling better about the possibility of controlling both the symptoms and the chance of osteoporosis, and her concern about cancer is diminished by the information. She indicates that she thinks she will choose hormone therapy, including estrogen and progestin, but that she would like "to sleep on it." Sara reinforces that the decision is Mona's to make and that she should take the time she needs. STEP FIVE: ASSISTING PATIENT TO DETERMINE MEANING
Gadow's fifth step of helping a patient clarify the personal meaning of the situation is included to promote patient individuality. Through this approach the patient not only has self-determination about the decision, but also about the personal meaning of the particular life experience. Illustration. Sara indicates that this decision-making situation also provides an opportunity for further reflection, if Mona would like to do so. Mona agrees. They discuss what meaning the experience of menopause has for Mona and how the decision she just made reflects her view of herself. She states that experiencing menopause has caused her to think about her sexuality. The ending of her childbearing ability is not distressing to her, even though she has no children. She feels that she is entering a new phase of her life and hopes to approach it as a challenge. Also, she feels good about her decision concerning estrogen replacement therapy. She has learned more about her body and feels in control of decisions about her body. She thanks Sara for helping her through this decisionmaking process. In this instance, Sara has implemented an advocacy role to help Mona decide and speak for herself.
Summary
Although advocacy is frequently emphasized in nursing, it is often used more as a slogan than as a true role to be put into practice. Implementing an advocacy role is difficult and sometimes threatening, because it promotes patients' self-determination, and because the professional's associated moral rights and
obligations may not be compatible with institutional policies or legal regulations. This article merges Gadow's model of ethical decision making and a decision theory model for structuring decision problems to guide operationalization of one aspect of an advocacy role, that of assisting another person to decide. This approach identified types of information that might be needed for informed decision making, including: (1) possible options, (2) chance events~associated with each option, (3) probabilities of chance events occurring, (4) possible outcomes of each option, and (5) patients' and nurses' values concerning options and outcomes. Important aspects of this operationalization were identified, including: (1) the patient's determination of the types and amount of information to be selected, (2) p a r t i c i p a t i o n of the p a t i e n t and nurse as whole persons, and (3) reflection on the meaning of the situation for the patient. If advocacy is the philosophical foundation of nursing, then appropriate methods for implementing it need to be developed and tested. The combined model presented in this article is intende d as a guide, not a prescription, for operationalizing one aspect of an advocacy role, that of helping another person to decide. Although guidelines are useful, the art of knowing how and when to implement them is vital to truly professional practice. It requires knowledge, skill, and courage. Nurses are encouraged to test and refine this model and to develop additional guidelines for other aspects of this role.
References
1. Nelson M: Advocacy in nursing: A concept in evolution. Nurs Outlook 36:136-141,1988 2. Winslow G: From loyalty to advocacy: A new metaphor for nursing. Hastings Cent Rep 7:32-40, 1984 3. Curtin L: The nurse as advocate: A philosophical foundation for nursing. Adv Nuts Sci t(3): 1-10, 1979 4. Gadow S: Existential advocacy: Philosophical foundation of nursing, in Spickes S, Gadow S (eds): Nursing: Imageg and Ideals. New York, Springer-Verlag, 1980, pp 79-101 5. Beauchamp T, Childress A: Principles of Biomedical Ethics, ed 2. New York, Oxford, 1983, p 61 6. Young t~Personal Autonomy: Beyond Negative and Positive Liberty. New York, St Martin's, 1986, p 19 7. Gadow S: A model for ethical decision making. Oncol Nurs Forum 7(3):44-47, 1980 8. Raiffa H: Decision Analysis: Introductory Lectures on Choice Under Uncertainty. Menlo Park, CA, AddisonWesley, 1968 9. Corcoran S: Decision analysis: A step-by-step guide for making clinical decisions. Nurs Health Care 7:149154, 1986
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10. Holzman G, Ravitch M, Metheny W, et al: Physician's judgments about estrogen replacement therapy for menopausal women. Obstet Gynecol 63:303-311, 1984 11. Rothert M: Women's Judgments of Estrogen Replacement Therapy. Proposal for Grant # 1 R01 NR01245-01A1 by the National Center for Nursing Research, 1986 12. Yarling R: Ethical analysis of a nursing problem:
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The scope of nursing practice in disclosing the truth to terminal patients, Part II. Supervisor Nurse 9(6):28-34, 1978 13. Miller.S: Predictability and human stress: Toward a clarification of evidence and theory. Adv Exp Social Psychol 14:203-255, 1981 14. Tuma J: Professional misconduct? Nurs Outlook 25:546, 1977 (letter)