- Email: [email protected]
What is an Ethical Decision?
I
oa99-5885/97 $0.00 + .20
Ethical Decision Making in the Critical Care Patient
What Is an Ethical Decision? Penny F. Pierce, PhD, RN
Today, more than ever before, patients and their families are placed in the position of making treatment decisions in a complex and alien medical environment with little, if any, insightful aid from health care professionals. Most practitioners are very well intentioned but admittedly naive about how to provide the decisional support patients need in these uncertain and complex circumstances. 9 We currently have little understanding of the decision experience of patients who must decide on a treatment alternative that may inextricably change the course or quality of their lives. More and more of our care of patients involves making therapeutic and humanistic decisions about the appropriate initiation of lifesupporting interventions, the determination of a futile condition for which treatment may be limited, and ultimately, the decision to withdraw treatment. 3• 5 These are stressful and emotional times that call on our resources and training to help patients and their families. This is also the context within which most of our ethical problems emerge; these are the situations in which we find ourselves not knowing what to do, what to say, what to advise, or where to go for help. The domain of ethical decision making integrates two disparate philosophies of deciFrom Division I, The University of Michigan School of Nursing, Ann Arbor, Michigan
sion science and moral reasoning. Decisionmaking support involves an approach to determining the best alternative based on a structured assessment of the decision problem.11 Ethical problems, in contrast, typically are approached from a philosophic, religious, or moral perspective. Yet some of the most perplexing problems in clinical practice involve integrating these perspectives to support patients and their families during the agonizing moments of life-and-death decision making. The intention of this article is to help practicing nurses understand the complexity of these issues by providing an explanation of the perspectives of these two approaches in an integrated descriptive framework. I have been working for some time to describe the decision behavior of patients and their families as they confront life-threatening health care events. 6• 7 The ultimate goal of my work is to better understand the intricacies and complexity of clinical decision making so health care professionals can be more instrumental in helping patients and their families make decisions that are effective and minimize adverse short- and long-term psychological outcomes. To achieve that goal, I propose a preliminary model that enables practitioners, researchers, and educators to conceptualize the complex process of making decisions in difficult, stressful, and uncertain circumstances. Such a model helps us in ad-
CRITICAL CARE NURSING CLINICS OF NORTH AMERICA I Volume 9 /Number 1 I March 1997
1
2
PIERCE
dressing the question "How does a health care provider go about the decision-making and problem-solving process in helping patients and their families with difficult decisions?" The first step is to understand the features of decision making that are critical to helping patients and their families through the decision-making process. Decision making is a process that rarely occurs in a neat, efficient, and uncomplicated manner. More often the process is marked by soul-searching discussions, agonizing dialogue among health care professionals, and sometimes even battles over the appropriate course of action. Because decision science applications are relatively new at the bedside, a brief overview of the analytic approach to decisions may be useful. The decision-making process consists of three major components: (1) the decision problem, which includes at least two alternatives, the value or utility of each alternative, and the likelihood or probability of an outcome for each alternative; (2) the decision make~, which may be the patient or his or her designated surrogate; and (3) the environment or context within which the decision is going to be made. The context component includes such considerations as the use of technology, the intensity or urgency of the choices to be made, the number and diversity of health care team members, the interactions between and among providers, economic considerations, time constraints, and the like. The next feature to consider is that decisions are value centered and personally determined by each individual. People make certain choices based on their personal, cultural, and religious values and what they believe is important in their lives. Because this process is intimate and personally relevant, there are large individual differences among patients and we must appreciate that everyone is unique and understand that no two situations will be exactly the same. This does not mean, • The term decision makeris used to designate the person making the decision, whether it be the patient or his or her family member or designated surrogate.
however, that each new situation cannot be framed in the same way, but whatever algorithm we use has to be able to account for individual differences. Without this attention to human differences, our approach will be mechanistic and unresponsive to the issues that are most crucial to patients and their families. To this end, we must take into account such factors as age, gender, religion, and culture. The context of the decision problem takes into account the uncertainty of the situation and recognizes that such uncertainty pushes us out of a state of equilibrium into a vulnerable and unsettling condition. People find great security in knowing that certain events in their lives are predictable. When major health care events jolt us out of our secure state of being, we experience that disequilibrium physically, emotionally, cognitively, and spiritually. Being upset is a stressful and vulnerable state of being and most people will take whatever course of action is most immediately available to get out of this uncomfortable state of being. Unfortunately, the most readily available course of action may not be the one that will bring about the best outcome or reflect the patient's preference. The struggle to regain control over the events in patients' lives can be influenced unduly by family members, health care providers, or anyone who seems to be able to offer a safe route of escape from such an unpleasant and frightening state of being. We also must remember that the decision maker is physically ill and may be experiencing pain, exhaustion, isolation, fear, or despair over the course of possible future events. Families most certainly experience distress that also may be compounded by the responsibility of making decisions for a family member who is unable or unwilling to make the decision. In previous work I have described an empiric description of the behavior of patients facing stressful health care decisions.6• 7 The components of the decision-making process include (1) salience of the decision problem, (2) decomposition of the alternatives, (3) information seeking and information processing, (4) developing a strategy or procedure,
WHAT IS AN ETHICAL DECISION?
(5) declaration of choice, and (6) postdecision appraisal.
Salience Salience simply means that the decision maker (patient or family member) recognizes that there is a decision to be made and fully understands the risks, benefits, and likely outcomes of each of the alternatives. It is not uncommon that patients or their surrogates do not fully realize when they are being asked by health care professionals to assume more participation, indeed, responsibility, for making treatment choices. Often they do not even see that they have anything to do other than
sign the consent form and go along with the recommended treatment. Frequently patients comply with the recommendations presented by a physician without fully understanding that they have the right to ask questions, to seek a second opinion, or to refuse or delay treatment. Many times we provide information concerning treatment alternatives to patients in a way that they do not understand fully. Patients may be unclear about the fact that we are asking for their participation and that we want to understand their preferences in the determination of an optimal treatment. In this particular situation, the different perspectives are very important. From the outside looking in, the professionals may have a preferred treatment, based on their clinical expe-
INTERVENTIONS
DIAGNOSTICS
~----1 Decision problem
Reframe or describe the problem (1) Salience Is the problem salient to the decision makers?
no
Describe the decision problem _ _ _ _n_o_ _ _-t in more detail
yes
(2) Decomposition of Alternatives Does the decision maker understand the various components of the decision problem? yes
Interventions to: l stress t cognitive capacity Reframe information
avoid
--------1
(3) Information Seeking
Does the decision maker seek or avoid information?
seek
(4) Strategy Does the decision maker ~----~ have a plan or strategy? no
yes
(5) Declaration of choice
I(6) Post-decision appraisal I Figure 1.
3
Empiric description of the decision-making process.
4
PIERCE
rience, that may be better than another, but looking at the problem from the patient's point of view, we need to understand that he or she also has a perception of the situation and preferences about what is going to be the best decision, given his or her life-style, unique circumstances, hopes and desires for the future. In some situations the decision is quite salient because of the emergent nature of the problem; decisions must be made immediately to save life or limb and there is not the luxury of an extensive deliberation. In lessemergent situations, however, there is time to collect the appropriate resources to determine the patient's understanding of the options and support them throughout the process. Sometimes the decision involves whether to act immediately or to wait for a period of time. We do not always realize that this is also a choice and that there will be consequences caused by either action. Some decision problems are not emergency situations, and we can offer patients and their families time to think about the options without the added burden of urgency that may force suboptimal decision making. Following are a few questions the clinician can use to assess the patient's understanding of the decision problem: • Does the decision maker (patient or patient's surrogate) have the knowledge and appropriate understanding of each option and the likely consequences? • Does the decision maker have the strength, will, and resources to make the decision at this time? • Does the patient prefer that another person make the decision in his or her behalf? • Is there a suitable surrogate that can be trusted to act in the patient's behalf without bias or undesirable motive? • What are the decision maker's preferences concerning his or her participation in the decision? • Does the decision maker require or request decision support? Decomposition of Alternatives Decomposition of alternatives involves breaking the decision problem down into its com-
ponents so the decision problem is more manageable to consider and also includes information that is relevant to consider (e.g., pain, disability, or length of recovery). Most of the time we look at choices as categories; I will do "A" or I will do "B." In fact, option A can be broken down into many components and option B also can be broken down into many components for further consideration. More information needs to be considered in this step, and it includes an assessment of the risks and benefits of each alternative. Consider medical and surgical alternatives for coronary artery disease-there is a cost attached to each option, there is a risk and benefit attached to each, and side effects are also different between them. A decision is comprised of at least two options or alternatives, and each of them carries with it either a known or unknown probability or likelihood of a particular outcome. In combination then, each alternative has a probability of occurring and also has a value or worth to the decision maker. For some people it is difficult to think of such emotionally charged information in probabilistic terms; a 50% chance, a 20% chance . . . what does that really mean? When a physician says, "This surgical intervention is 800Ai effective," most would think that is an optimistic prognosis. Rarely does anyone pause to consider what happens to the other 200Ai or to ask him- or herself, "How would I feel if I were in the 200/o group?" For example, a patient may be asked to decide between medical or surgical treatment, and the medical treatment, in this case, is more likely to be effective but with side effects that impact quality of life. The surgical treatment, however, also holds specific risks. The decision maker must weigh his or her personal values concerning those quality-of-life issues and make a determination about the possible outcomes. Each alternative has attached to it a certain probability that it will occur. To further the explanation, consider another patient with severe cardiovascular disease who may be told that he or she has a 75% chance of dying within the next year without surgical intervention (alternative A). With a certain surgical intervention, however, the patient is told he or she has a "reasonable"
WHAT IS AN ETHICAL DECISION?
chance of a pain-free Hfe expectancy of at least 10 years (alternative B). A diagram of the decision problem is shown in a decision tree in Figure 2. The decision has two alternatives; one is to consent to surgery (with an uncertain probability), and the other is to decline surgery. It is often difficult to quantify the probabilities accurately (whether provided in numbers or with descriptions), and physicians are sometimes reluctant to discuss "numbers" with patients because of the uncertainty of the circumstance. The alternatives, however, do have important differences between them and it is important to assess if patients fully understand these differences as well as the uncertainty inherent in real-world decision making. It is also critically important to assess the patient's values inherent in the consideration of each of the alternatives. To carry the example further, alternative A just described sounds pessimistic (75% chance of dying within the next year). That is unless you know that the patient's religious beliefs prohibit surgery and he or she believes that at age 85, he or she has lived a full and rich life and prefers to continue the present regimen and put his or her life in God's hands. Certainly the same decision problem will involve very different values for a 40-year-old mother willing to accept certain risks with the hope of extending her life so she can care for her three young children. Decomposition of the alternatives also includes a discussion of the inherent risk of the alternatives as well as the benefits so the decision maker can make an informed decision based on his or her personal value of the outcomes. In the critical care context, we
often see heroic measures instituted in the belief that it will benefit the patient but sometimes without adequate consideration of the physical, emotional, and financial costs. Following are a few questions clinicians can ask during this stage of the decision-making process: • Does the decision maker know and understand the likely positive and negative consequences of each of the alternatives? • Does the decision maker have information concerning the probability (if available) of each outcome? • Does the decision maker know the risks of each alternative? • What factors are important to the decision maker? • What are the decision maker's preferences?
Information Seeking and Processing
Information seeking and information processing are critically important components of the decision-making process and an area in which nurses play a powerful role. Nurses actively engage patients and their families in information-seeking sessions and readily answer questions to help them understand their condition and the recommended treatments. Information processing, however, is a more complex issue involving the patient's cognitive ability to think, reason, and solve problems. There is a growing body of evidence that indicates that patients confronted with life-threatening diagnoses for which they must make a treatment decision experience
OUTCOME
?
Dies
Sur ery
? (.75)
(.25)
Figure 2.
5
A decision tree.
Survives
Dies Survives
with pain
6
PIERCE
difficulty with these higher cognitive functions.1· 2· 12 Patients may experience difficulty with their short-term memory, which necessitates their asking the same question several times and seeking additional support in understanding fully the problem at hand. We must also avoid the temptation to provide more information in these situations in the belief that more is better. In these attempts, we often overload patients with information that may not be necessary or relevant to the decision. We need to make more discriminating judgments about what information is appropriate and useful for the decision task. Nursing interventions may be necessary to provide information in small portions over an extended period of time as well as providing restorative activities for the decision maker in support of his or her decision-making capacity.1· 2 In the diagnostics of information processing, it is important to assess if the patient seeks or avoids information. Very often, patients avoid information because it is unpleasant, stressful, or threatening. Yet this may be the very information that is critical in terms of making a well-informed decision. Professionals may also tend to avoid negative or threatening information for fear it will distress or alarm the patient. Nursing interventions can help support patients through the process by providing psychological support (reducing threat or enhancing cognitive capacity) while providing information vital to the decision problem. Following are two main questions to help guide an assessment of the patient's intention and capacity to use information necessary for quality decision making: • Does the decision maker seek or avoid information? The answer to this question serves as an indicator of the agent's need and desire for participation in the process; it also may alert the practitioner that the patient is so physically and emotionally compromised that support is needed in this area to ensure that he or she has the information needed to make an informed choice, and also that information is presented in a usable way given the patient's limited processing capability.
• Does the decision maker have the cognitive ability to process information that is probabilistic, uncertain, and at times, threatening? These cognitive tasks are demanding under the best of circumstances; from evidence that is accumulating in the literature, we know that these problem-solving functions are limited severely when the decision maker is physically ill or emotionally distracted by the situation. How then, can providers best judge what type and amount of information is useful and appropriate for patients in making treatment decisions? In this context, we walk a fine line between "protecting" the patient from information that may be distressing or upsetting while simultaneously trying to provide the requisite amount of information to ensure informed consent. More research is needed in this area to better answer the question, "How can nurses provide information, support, and counsel in ways that do not bias the preferences of the patient yet satisfy the requirements of informed consent?"
Strategy
The next step involves a strategy, which means that the patient has some organizing framework for considering the information relevant to the decision. We all have had the experience of patients who have kept notes, made lists, and compiled checklists to help organize relevant information and questions. This is a very important step because the more effective decision makers find ways to organize pertinent information and develop a plan or strategy to make their choice. As mentioned previously, patients frequently are overwhelmed by the decision and find it difficult to sort out information and determine the relevant attributes of each alternative. Not all patients have the strength or inclination to organize information and engage in deliberative, strategic thinking. Family members often are called upon to assume these activities, yet we also must remember that they are under tremendous stress as well and may need sup-
WHAT IS AN ETHICAL DECISION?
port to fully understand and use information. Consideration of the following questions will assist practitioners in assessing a family member's decision-making capacity. • Does the decision maker have a plan or procedure for making the decision? • Does the decision maker need assistance with sorting and organizing information into a workable strategy that would support a quality decision-making process? • Does the decision maker carefully consider each alternative, its likelihood, and its potential consequences? • How will the decision maker judge both the quality and the outcomes of the decision?
Declaration of Choice
The point at which patients declare a choice is either a source of relief or a source of great stress and anticipation. Taking the responsibility for one's choices is sometimes the most difficult and lonely of human actions. It is at this point that patients need tremendous support and part of that support involves helping them recognize that sometimes even good decisions can result in poor outcomes. The decision maker can do everything "right," he or she can seek good information, have consultation from all the experts, and have a positive frame of mind, and bad things can still happen. Support at this time helps the patient recognize that the decision-making process and the outcomes of those decisions are sometimes independent events-it is the nature of the uncertainty and unpredictability of life. If the patient is satisfied with the process of making the decision and believes that at the time he or she did all that could be done, there will be less regret and disappointment in the postdecision phase of the process.•· 10 It is also important at this point that the patient begin to think beyond making the actual decision and give some thought to what might be the consequences of each of the alternatives. Such information includes consideration of the emotional and affective responses to the choice, including regret,
7
remorse, and disappointment. These considerations are extremely important when the decision involves end-of-life decisions and those with potentially high personal costs. Consider, for example, a patient facing treatment for peripheral vascular disease who has been given the option of an extensive revascularization procedure that will attempt to salvage the leg but may not be successful and also will require a longer hospitalization. Given the option of amputation, the patient considers a life that is free of pain, but must think about life with an artificial limb and the ways in which his or her lifestyle may be affected. There is no clear-cut right or wrong answer for this scenario, but an elicitation of the decision-making procedure will elucidate the patient's feelings and thoughts about these future events in a way that helps him or her prepare for a full range of outcomes. Questions to consider at this point include: • How does the decision maker evaluate the likelihood that the choice will bring about the outcomes he or she prefers? • Does the decision maker understand that good choices do not always bring about good outcomes? • Is the decision maker satisfied with the process of making the decision? • For surrogates, is this a decision with which the surviving family members will be comfortable? • Is there lingering uncertainty about the quality of the decision?
Postdecision Appraisal
The period of postdecision appraisal is the time when we all "second guess" the decisions we have made. It is the "Mondaymoming quarterbacking" when all the plays are reviewed and it is much easier to see where the game could have taken a different tum. This is the point at which patients and providers try to reconcile their expectations with what they hoped would happen and with what actually did happen. The emotional reactions of the postdecision period can be extreme and range from anger to disappoint-
I :
8
PIERCE
ment, to depression, or to elation. Sometimes things tum out better than we expected and of course, there should always be room for these possibilities as well. An important point is that when patients take responsibility for their own choices and participate in the decision-making process, the outcome of those choices can influence the emotional and physical well-being. Certainly this is evident for family members who are sometimes put in the unenviable position of making decisions about terminating treatment or declining treatment for their loved one. Families making these decisions need the same care and attention to their emotional well-being in the postdecision phase, paying particular attention to unwarranted guilt or blame that may affect family functioning in years to come. Points to consider during the postdecision phase include: • How does the decision maker evaluate his or her choice now that the outcome is known? • Was the decision maker prepared for the possibility of untoward or negative outcomes? • How does the decision maker reconcile his or her expectations with what actually occurs? • What are the psychological responses to the decision outcomes? Analytic procedures are most helpful when there is a decision problem that is complex, with many possible alternatives and outcomes. In the ideal situation, a decision maker is provided the necessary support to arrive at a choice that is most likely to bring about a satisfactory outcome. Quality decision making seeks to ensure that the appropriate agents are involved, that we pay attention to equity and justice issues, that we attend to the cost and benefit considerations to all concerned, that there is procedural accuracy in the process, and that we seek a solution that is justifiable to ourselves, the patient, his or her family, and society at large. Such procedures are not particularly helpful when there is a great deal of uncertainty about a proper course of action or when there is a moral imperative to be considered.
Ethical Considerations of Clinical Decision Making The interesting question here is, "When does a clinical decision-making problem become an ethical problem?" Some of the following questions may be helpful to determine if we have an ethical problem versus a decision problem. These are important questions because they help determine what approach to take and identify the appropriate supportive personnel to bring into the dialogue. Most of us, when we feel ourselves shifting into an ethical problem, feel that we need to call for additional resources-an ethicist, the hospital attorney, or a social worker, among others. In sorting out these issues, it seems that clinical decision problems become ethical problems when there is disagreement among the team members about one or more of the following issues: • Agents: Who should be the decision maker? When the agent is the patient we might ask, "Does he or she have the necessary strength, will, or cognitive ability to process information and make judgments?" This consideration is also applicable for families under stress as well. How do we determine their capabilities for making choices on behalf of another? Families in these circumstances have the additional burden of trying to determine the wishes of another person and without an advanced directive, wondering if they are truly expressing the patient's intentions. When the family is in disagreement or reluctant to make such decisions, who then should become the surrogate and who should delegate this authority? • Responsibility: Whose decision is it? Whose voice is paramount in the declaration of choice? The decision rests most directly on those who must live with the consequences of the choice. It is one thing for health professionals to make a decision for someone whom they may never see again. We will not see the lived experience of that choice and will never know what it means to have one's life
WHAT IS AN ETHICAL DECISION?
inextricably changed by taking one path rather than the other. The burden of choice falls on those who have accepted the responsibility of the decision-making process. For nursing, this action directly involves us as well, because nurses must provide information, listen to, and counsel patients, even in an informal way. We have a greater effect on the formation of the patient's preferences than we might imagine, and this influence also makes us responsible for our conduct in these deliberations. Ideally, a decision maker is provided the necessary emotional and analytic support to arrive at a choice that is most likely to bring about a satisfactory outcome. For surrogates making end-oflife decisions, particular attention is required throughout the process to attenuate future remorse and regret. • Cost-Benefit: Who seeks to gain from the decision and who will incur the greatest costs (physical, emotional, spiritual, and financial)? These issues fall into the ethical domain when the cost cannot be justified on the basis of highly predictable and reasonable outcomes. In other words, it is when we cannot reasonably ensure that the outcome will bring about a sufficient quality of life that it is justified to invest tremendous economic cost or suffering. We see these situations with extremely premature infants whose conditions require enormous economic cost but also have an uncertain future with regard to their physical and intellectual health. At the other end of the lifespan, we have all questioned the seemingly unreasonable cost of intensive treatment for end-stage disease among persons with diminished cognitive abilities, advanced metastatic cancer, or the very aged when there is a very low probability of any gain in either quantity or quality of life. • Procedural Accuracy: A decision problem can become an ethical problem when an acceptable and straightforward procedure does not exist for selection of an option. This may be attributable to the experimental nature of the alternatives,
9
when there may not be enough evidence to suggest that the treatment will bring about the outcomes the patient desires, or when there is such uncertainty that the risk raises questions about the desirability of a particular option. Do we know what the likely outcomes might be for a particular treatment? Have we communicated the uncertainty involved clearly and honestly? Are we asking the right questions? • justifying Outcomes to Self and Society: Can we answer to ourselves and to others about our role and responsibility in a particular decision? There are times when an analytic procedure may suggest a choice that we would find distasteful in some way. For example, it may not be economically prudent to spend $1,000,000 on a very premature infant with multiple disabilities, but who is going to tell the parents that interventions are not warranted to save the life of their child? In such instances, the decision may be made in an analytically appropriate manner, but we do not like the answer on moral grounds, which seems to supersede the consideration of time, money, and effort. Rather, these decisions reside in a domain of our practice that is much more difficult to quantify and justify, but one which certainly needs insightful and committed dialogue. In sununary, the identification of an ethical decision problem, in my experience, is when at least one of the following is present: • When the decision maker does not have the necessary strength, will, or cognitive abilities to process information and make judgments, requiring the designation of a surrogate to act on his or her behalf (substituted judgment). • When an acceptable and straightforward procedure for selecting an option is not present (probabilities and utilities are not known for a particular treatment). • When the outcomes are uncertain and involve high risk and the cost is high in terms of money, time, stress, and suffering. This includes futile situations in
10
PIERCE
which interventions may have little or no benefit to the patient. • When decision analytic procedures suggest an option that human reasoning or emotions find unacceptable. • And generally, when there are conflicts among the agents concerning who will make the decision, how the decision will be made, whose values and preferences will be considered, and who will suffer or benefit from the consequences of the choice.
A Framework for Assessing Clinical Decision Problems A tentative framework of clinical decision problems is provided to help target the domain of the problem and help clinicians understand the contingencies that can affect the process so the proper resources can be mobilized (Fig. 3). The core elements of the decision problem are complexity and uncertainty. Decision problems that are less complex and involve minimal uncertainty are shown in the lower left quadrant of the figure. Situations that involve two alternatives that are rather straightforward and simple are really a matter of making a choice between one or the other option (A versus B), and there is little or no uncertainty regarding the outcome. These choices occur almost automatically because
the options are clear and there is little emotional involvement. As the complexity of a situation increases, more problem-solving behavior may be involved. Not all problems require that a decision be made; in fact, some of the problem solving may involve determining what treatments need to be considered, who needs to be involved, and whether or not a decision needs to be posed to a patient or family member. This form of problem solving is sometimes called "means-ends" in that one searches to find a way (means) of deriving a solution (ends). These problems are best addressed by clear and open communication and may not require any additional decisional support or intervention. Most of the decisions that consume a tremendous amount of our time and resources, in contrast, do so because they involve either a complicated decision problem with multiple options of varying uncertainty or because there are ethical considerations. Sometimes the boundary between a complex decision problem requiring some analytic intervention and those in a domain of moral behavior is less clear. Practitioners need the ability to recognize when situations have moral implications and when those implications include outcomes that might affect others (moral sensitivity); the willingness to place moral concerns higher than other concerns (moral motivation); and to have the strength, confidence,
COMPLEXITY • Ethical Decision Making (Moral Component)
• Decision Making
UNCERTAINTY~~~~~~~~~-t-~~~~~(A_n_al~~-ic)..._~~~-
• Problem Solving (Means - Ends)
• Choice (A'l'SB)
Figure 3.
Framework for clinical decision problems and approaches.
WHAT IS AN ETHICAL DECISION?
and ability to carry out moral behaviors (moral character).9 In some instances the two categories may interact as depicted in the upper right quadrant of Figure 3; a decision may be sufficiently complicated to require a more structured analytic approach and also be difficult for practitioners to carry out because of the morality involved. Some issues, in contrast, are emotionally difficult without being ethically or analytically complicated. It is rarely, however, that one engages in an ethical decision without the arousal of strong feelings and emotions. A comprehensive framework for ethical decision making ideally would include the following considerations: (1) the discipline and rigor of analytic models that tell us how to structure the decision when sufficient information is available to ensure that there is procedural accuracy and precision in the decision-making process, (2) the grounding and elegance of empiric models that describe what human beings actually do and think and feel when they make complex and stressful decisions (this calls for more qualitative studies of the phenomenon as we observe it in our practice), and (3) the support of moral reasoning that helps us make decisions that are consistent with our human and professional values. We need to work towards developing an approach that is sensitive to human needs and responsive to contextual considerations, understanding that each situation will be unique. The goal in learning more about the ways patients and their families go about making health care choices is, ultimately, to (1) help them become more efficient given their limited resources, (2) reduce the psychological stress of making the decision, and (3) help patients arrive at a decision that most accurately reflects their preferences and values. The advantages of a model or framework are that it provides a systematic
11
way of addressing these problems; it permits us to raise questions about how we, as professionals, provide decisional support to families in the midst of a crisis; and how we evaluate the outcomes of our interventions on the wellbeing of those for whom we care. ACKNOWLEDGMENT
The author acknowledges the intellectual contribution of graduate students in a course titled "Health Care Decision Making in Contemporary Society," including Vicky Debold, Michelle Llken, Cathy Weigel, and Michael Williams. Portions of this article were presented first at an American Association of Critical Care Nurses teleconference titled, "Supporting Difficult Health Care Decisions of Patients, Families, and Providers" on November 17, 1994.
REFERENCES 1. Cimprich B: A theoretical perspective on attention and patient education. Advances in Nursing Science 14:39-51, 1992 2. Cimprich B: Development of an intervention to restore attention in cancer patients. Cancer Nursing 16:83-92, 1993 3. Hospital Ethics: Hospitals establish policies to limit futile care. September/October, 1993, p 209 4. Landman J: Regret: Persistence of the Possible. New York, Oxford University Press, 1993 5. Lee DKP, Swinburne AJ, Fedullo AJ, et al: Withdrawing care: Experience in a medical intensive care unit. JAMA 271:1358-1361, 1994 6. Pierce PF: Deciding on breast cancer treatment: A description of decision behavior. Nursing Research 42:22-28, 1986 7. Pierce PF: When the patient chooses: Describing unaided decisions in health care. Human Factors 38:278-287, 1996 8. Scanlon C: Developing ethical competence. The American Nurse, March, 10-11, 1994 9. Schaefli A, Rest JJ, Thoma SJ: Does moral education improve oral judgment? A meta-analysis of intervention studies using the Defining Issues Test. Review of Educational Research 35:319-352, 1985 10. Wagener JJ, Taylor SE: What else could I have done? Patients' responses to failed treatment decisions. Health Psychology 5:481-496, 1986 11. Weinstein MC, Fineberg HY, Elstein AS, et al: Clinical Decision Analysis. Philadelphia, WB Saunders, 1980 12. Yates JF, Klatzky RI., Young CA: Cognitive performance under stress. In Nickerson RS (ed): Emerging Needs and Opportunities for Human Factors Research. Washington, DC, National Academy Press, 1995, pp 262-290 Address reprint requests to Penny F. Pierce, PhD, RN The University of Michigan School of Nursing 400 North Ingalls Ann Albor, MI 48109
oa99-5885/97 $0.00 + .20
Ethical Decision Making in the Critical Care Patient
What Is an Ethical Decision? Penny F. Pierce, PhD, RN
Today, more than ever before, patients and their families are placed in the position of making treatment decisions in a complex and alien medical environment with little, if any, insightful aid from health care professionals. Most practitioners are very well intentioned but admittedly naive about how to provide the decisional support patients need in these uncertain and complex circumstances. 9 We currently have little understanding of the decision experience of patients who must decide on a treatment alternative that may inextricably change the course or quality of their lives. More and more of our care of patients involves making therapeutic and humanistic decisions about the appropriate initiation of lifesupporting interventions, the determination of a futile condition for which treatment may be limited, and ultimately, the decision to withdraw treatment. 3• 5 These are stressful and emotional times that call on our resources and training to help patients and their families. This is also the context within which most of our ethical problems emerge; these are the situations in which we find ourselves not knowing what to do, what to say, what to advise, or where to go for help. The domain of ethical decision making integrates two disparate philosophies of deciFrom Division I, The University of Michigan School of Nursing, Ann Arbor, Michigan
sion science and moral reasoning. Decisionmaking support involves an approach to determining the best alternative based on a structured assessment of the decision problem.11 Ethical problems, in contrast, typically are approached from a philosophic, religious, or moral perspective. Yet some of the most perplexing problems in clinical practice involve integrating these perspectives to support patients and their families during the agonizing moments of life-and-death decision making. The intention of this article is to help practicing nurses understand the complexity of these issues by providing an explanation of the perspectives of these two approaches in an integrated descriptive framework. I have been working for some time to describe the decision behavior of patients and their families as they confront life-threatening health care events. 6• 7 The ultimate goal of my work is to better understand the intricacies and complexity of clinical decision making so health care professionals can be more instrumental in helping patients and their families make decisions that are effective and minimize adverse short- and long-term psychological outcomes. To achieve that goal, I propose a preliminary model that enables practitioners, researchers, and educators to conceptualize the complex process of making decisions in difficult, stressful, and uncertain circumstances. Such a model helps us in ad-
CRITICAL CARE NURSING CLINICS OF NORTH AMERICA I Volume 9 /Number 1 I March 1997
1
2
PIERCE
dressing the question "How does a health care provider go about the decision-making and problem-solving process in helping patients and their families with difficult decisions?" The first step is to understand the features of decision making that are critical to helping patients and their families through the decision-making process. Decision making is a process that rarely occurs in a neat, efficient, and uncomplicated manner. More often the process is marked by soul-searching discussions, agonizing dialogue among health care professionals, and sometimes even battles over the appropriate course of action. Because decision science applications are relatively new at the bedside, a brief overview of the analytic approach to decisions may be useful. The decision-making process consists of three major components: (1) the decision problem, which includes at least two alternatives, the value or utility of each alternative, and the likelihood or probability of an outcome for each alternative; (2) the decision make~, which may be the patient or his or her designated surrogate; and (3) the environment or context within which the decision is going to be made. The context component includes such considerations as the use of technology, the intensity or urgency of the choices to be made, the number and diversity of health care team members, the interactions between and among providers, economic considerations, time constraints, and the like. The next feature to consider is that decisions are value centered and personally determined by each individual. People make certain choices based on their personal, cultural, and religious values and what they believe is important in their lives. Because this process is intimate and personally relevant, there are large individual differences among patients and we must appreciate that everyone is unique and understand that no two situations will be exactly the same. This does not mean, • The term decision makeris used to designate the person making the decision, whether it be the patient or his or her family member or designated surrogate.
however, that each new situation cannot be framed in the same way, but whatever algorithm we use has to be able to account for individual differences. Without this attention to human differences, our approach will be mechanistic and unresponsive to the issues that are most crucial to patients and their families. To this end, we must take into account such factors as age, gender, religion, and culture. The context of the decision problem takes into account the uncertainty of the situation and recognizes that such uncertainty pushes us out of a state of equilibrium into a vulnerable and unsettling condition. People find great security in knowing that certain events in their lives are predictable. When major health care events jolt us out of our secure state of being, we experience that disequilibrium physically, emotionally, cognitively, and spiritually. Being upset is a stressful and vulnerable state of being and most people will take whatever course of action is most immediately available to get out of this uncomfortable state of being. Unfortunately, the most readily available course of action may not be the one that will bring about the best outcome or reflect the patient's preference. The struggle to regain control over the events in patients' lives can be influenced unduly by family members, health care providers, or anyone who seems to be able to offer a safe route of escape from such an unpleasant and frightening state of being. We also must remember that the decision maker is physically ill and may be experiencing pain, exhaustion, isolation, fear, or despair over the course of possible future events. Families most certainly experience distress that also may be compounded by the responsibility of making decisions for a family member who is unable or unwilling to make the decision. In previous work I have described an empiric description of the behavior of patients facing stressful health care decisions.6• 7 The components of the decision-making process include (1) salience of the decision problem, (2) decomposition of the alternatives, (3) information seeking and information processing, (4) developing a strategy or procedure,
WHAT IS AN ETHICAL DECISION?
(5) declaration of choice, and (6) postdecision appraisal.
Salience Salience simply means that the decision maker (patient or family member) recognizes that there is a decision to be made and fully understands the risks, benefits, and likely outcomes of each of the alternatives. It is not uncommon that patients or their surrogates do not fully realize when they are being asked by health care professionals to assume more participation, indeed, responsibility, for making treatment choices. Often they do not even see that they have anything to do other than
sign the consent form and go along with the recommended treatment. Frequently patients comply with the recommendations presented by a physician without fully understanding that they have the right to ask questions, to seek a second opinion, or to refuse or delay treatment. Many times we provide information concerning treatment alternatives to patients in a way that they do not understand fully. Patients may be unclear about the fact that we are asking for their participation and that we want to understand their preferences in the determination of an optimal treatment. In this particular situation, the different perspectives are very important. From the outside looking in, the professionals may have a preferred treatment, based on their clinical expe-
INTERVENTIONS
DIAGNOSTICS
~----1 Decision problem
Reframe or describe the problem (1) Salience Is the problem salient to the decision makers?
no
Describe the decision problem _ _ _ _n_o_ _ _-t in more detail
yes
(2) Decomposition of Alternatives Does the decision maker understand the various components of the decision problem? yes
Interventions to: l stress t cognitive capacity Reframe information
avoid
--------1
(3) Information Seeking
Does the decision maker seek or avoid information?
seek
(4) Strategy Does the decision maker ~----~ have a plan or strategy? no
yes
(5) Declaration of choice
I(6) Post-decision appraisal I Figure 1.
3
Empiric description of the decision-making process.
4
PIERCE
rience, that may be better than another, but looking at the problem from the patient's point of view, we need to understand that he or she also has a perception of the situation and preferences about what is going to be the best decision, given his or her life-style, unique circumstances, hopes and desires for the future. In some situations the decision is quite salient because of the emergent nature of the problem; decisions must be made immediately to save life or limb and there is not the luxury of an extensive deliberation. In lessemergent situations, however, there is time to collect the appropriate resources to determine the patient's understanding of the options and support them throughout the process. Sometimes the decision involves whether to act immediately or to wait for a period of time. We do not always realize that this is also a choice and that there will be consequences caused by either action. Some decision problems are not emergency situations, and we can offer patients and their families time to think about the options without the added burden of urgency that may force suboptimal decision making. Following are a few questions the clinician can use to assess the patient's understanding of the decision problem: • Does the decision maker (patient or patient's surrogate) have the knowledge and appropriate understanding of each option and the likely consequences? • Does the decision maker have the strength, will, and resources to make the decision at this time? • Does the patient prefer that another person make the decision in his or her behalf? • Is there a suitable surrogate that can be trusted to act in the patient's behalf without bias or undesirable motive? • What are the decision maker's preferences concerning his or her participation in the decision? • Does the decision maker require or request decision support? Decomposition of Alternatives Decomposition of alternatives involves breaking the decision problem down into its com-
ponents so the decision problem is more manageable to consider and also includes information that is relevant to consider (e.g., pain, disability, or length of recovery). Most of the time we look at choices as categories; I will do "A" or I will do "B." In fact, option A can be broken down into many components and option B also can be broken down into many components for further consideration. More information needs to be considered in this step, and it includes an assessment of the risks and benefits of each alternative. Consider medical and surgical alternatives for coronary artery disease-there is a cost attached to each option, there is a risk and benefit attached to each, and side effects are also different between them. A decision is comprised of at least two options or alternatives, and each of them carries with it either a known or unknown probability or likelihood of a particular outcome. In combination then, each alternative has a probability of occurring and also has a value or worth to the decision maker. For some people it is difficult to think of such emotionally charged information in probabilistic terms; a 50% chance, a 20% chance . . . what does that really mean? When a physician says, "This surgical intervention is 800Ai effective," most would think that is an optimistic prognosis. Rarely does anyone pause to consider what happens to the other 200Ai or to ask him- or herself, "How would I feel if I were in the 200/o group?" For example, a patient may be asked to decide between medical or surgical treatment, and the medical treatment, in this case, is more likely to be effective but with side effects that impact quality of life. The surgical treatment, however, also holds specific risks. The decision maker must weigh his or her personal values concerning those quality-of-life issues and make a determination about the possible outcomes. Each alternative has attached to it a certain probability that it will occur. To further the explanation, consider another patient with severe cardiovascular disease who may be told that he or she has a 75% chance of dying within the next year without surgical intervention (alternative A). With a certain surgical intervention, however, the patient is told he or she has a "reasonable"
WHAT IS AN ETHICAL DECISION?
chance of a pain-free Hfe expectancy of at least 10 years (alternative B). A diagram of the decision problem is shown in a decision tree in Figure 2. The decision has two alternatives; one is to consent to surgery (with an uncertain probability), and the other is to decline surgery. It is often difficult to quantify the probabilities accurately (whether provided in numbers or with descriptions), and physicians are sometimes reluctant to discuss "numbers" with patients because of the uncertainty of the circumstance. The alternatives, however, do have important differences between them and it is important to assess if patients fully understand these differences as well as the uncertainty inherent in real-world decision making. It is also critically important to assess the patient's values inherent in the consideration of each of the alternatives. To carry the example further, alternative A just described sounds pessimistic (75% chance of dying within the next year). That is unless you know that the patient's religious beliefs prohibit surgery and he or she believes that at age 85, he or she has lived a full and rich life and prefers to continue the present regimen and put his or her life in God's hands. Certainly the same decision problem will involve very different values for a 40-year-old mother willing to accept certain risks with the hope of extending her life so she can care for her three young children. Decomposition of the alternatives also includes a discussion of the inherent risk of the alternatives as well as the benefits so the decision maker can make an informed decision based on his or her personal value of the outcomes. In the critical care context, we
often see heroic measures instituted in the belief that it will benefit the patient but sometimes without adequate consideration of the physical, emotional, and financial costs. Following are a few questions clinicians can ask during this stage of the decision-making process: • Does the decision maker know and understand the likely positive and negative consequences of each of the alternatives? • Does the decision maker have information concerning the probability (if available) of each outcome? • Does the decision maker know the risks of each alternative? • What factors are important to the decision maker? • What are the decision maker's preferences?
Information Seeking and Processing
Information seeking and information processing are critically important components of the decision-making process and an area in which nurses play a powerful role. Nurses actively engage patients and their families in information-seeking sessions and readily answer questions to help them understand their condition and the recommended treatments. Information processing, however, is a more complex issue involving the patient's cognitive ability to think, reason, and solve problems. There is a growing body of evidence that indicates that patients confronted with life-threatening diagnoses for which they must make a treatment decision experience
OUTCOME
?
Dies
Sur ery
? (.75)
(.25)
Figure 2.
5
A decision tree.
Survives
Dies Survives
with pain
6
PIERCE
difficulty with these higher cognitive functions.1· 2· 12 Patients may experience difficulty with their short-term memory, which necessitates their asking the same question several times and seeking additional support in understanding fully the problem at hand. We must also avoid the temptation to provide more information in these situations in the belief that more is better. In these attempts, we often overload patients with information that may not be necessary or relevant to the decision. We need to make more discriminating judgments about what information is appropriate and useful for the decision task. Nursing interventions may be necessary to provide information in small portions over an extended period of time as well as providing restorative activities for the decision maker in support of his or her decision-making capacity.1· 2 In the diagnostics of information processing, it is important to assess if the patient seeks or avoids information. Very often, patients avoid information because it is unpleasant, stressful, or threatening. Yet this may be the very information that is critical in terms of making a well-informed decision. Professionals may also tend to avoid negative or threatening information for fear it will distress or alarm the patient. Nursing interventions can help support patients through the process by providing psychological support (reducing threat or enhancing cognitive capacity) while providing information vital to the decision problem. Following are two main questions to help guide an assessment of the patient's intention and capacity to use information necessary for quality decision making: • Does the decision maker seek or avoid information? The answer to this question serves as an indicator of the agent's need and desire for participation in the process; it also may alert the practitioner that the patient is so physically and emotionally compromised that support is needed in this area to ensure that he or she has the information needed to make an informed choice, and also that information is presented in a usable way given the patient's limited processing capability.
• Does the decision maker have the cognitive ability to process information that is probabilistic, uncertain, and at times, threatening? These cognitive tasks are demanding under the best of circumstances; from evidence that is accumulating in the literature, we know that these problem-solving functions are limited severely when the decision maker is physically ill or emotionally distracted by the situation. How then, can providers best judge what type and amount of information is useful and appropriate for patients in making treatment decisions? In this context, we walk a fine line between "protecting" the patient from information that may be distressing or upsetting while simultaneously trying to provide the requisite amount of information to ensure informed consent. More research is needed in this area to better answer the question, "How can nurses provide information, support, and counsel in ways that do not bias the preferences of the patient yet satisfy the requirements of informed consent?"
Strategy
The next step involves a strategy, which means that the patient has some organizing framework for considering the information relevant to the decision. We all have had the experience of patients who have kept notes, made lists, and compiled checklists to help organize relevant information and questions. This is a very important step because the more effective decision makers find ways to organize pertinent information and develop a plan or strategy to make their choice. As mentioned previously, patients frequently are overwhelmed by the decision and find it difficult to sort out information and determine the relevant attributes of each alternative. Not all patients have the strength or inclination to organize information and engage in deliberative, strategic thinking. Family members often are called upon to assume these activities, yet we also must remember that they are under tremendous stress as well and may need sup-
WHAT IS AN ETHICAL DECISION?
port to fully understand and use information. Consideration of the following questions will assist practitioners in assessing a family member's decision-making capacity. • Does the decision maker have a plan or procedure for making the decision? • Does the decision maker need assistance with sorting and organizing information into a workable strategy that would support a quality decision-making process? • Does the decision maker carefully consider each alternative, its likelihood, and its potential consequences? • How will the decision maker judge both the quality and the outcomes of the decision?
Declaration of Choice
The point at which patients declare a choice is either a source of relief or a source of great stress and anticipation. Taking the responsibility for one's choices is sometimes the most difficult and lonely of human actions. It is at this point that patients need tremendous support and part of that support involves helping them recognize that sometimes even good decisions can result in poor outcomes. The decision maker can do everything "right," he or she can seek good information, have consultation from all the experts, and have a positive frame of mind, and bad things can still happen. Support at this time helps the patient recognize that the decision-making process and the outcomes of those decisions are sometimes independent events-it is the nature of the uncertainty and unpredictability of life. If the patient is satisfied with the process of making the decision and believes that at the time he or she did all that could be done, there will be less regret and disappointment in the postdecision phase of the process.•· 10 It is also important at this point that the patient begin to think beyond making the actual decision and give some thought to what might be the consequences of each of the alternatives. Such information includes consideration of the emotional and affective responses to the choice, including regret,
7
remorse, and disappointment. These considerations are extremely important when the decision involves end-of-life decisions and those with potentially high personal costs. Consider, for example, a patient facing treatment for peripheral vascular disease who has been given the option of an extensive revascularization procedure that will attempt to salvage the leg but may not be successful and also will require a longer hospitalization. Given the option of amputation, the patient considers a life that is free of pain, but must think about life with an artificial limb and the ways in which his or her lifestyle may be affected. There is no clear-cut right or wrong answer for this scenario, but an elicitation of the decision-making procedure will elucidate the patient's feelings and thoughts about these future events in a way that helps him or her prepare for a full range of outcomes. Questions to consider at this point include: • How does the decision maker evaluate the likelihood that the choice will bring about the outcomes he or she prefers? • Does the decision maker understand that good choices do not always bring about good outcomes? • Is the decision maker satisfied with the process of making the decision? • For surrogates, is this a decision with which the surviving family members will be comfortable? • Is there lingering uncertainty about the quality of the decision?
Postdecision Appraisal
The period of postdecision appraisal is the time when we all "second guess" the decisions we have made. It is the "Mondaymoming quarterbacking" when all the plays are reviewed and it is much easier to see where the game could have taken a different tum. This is the point at which patients and providers try to reconcile their expectations with what they hoped would happen and with what actually did happen. The emotional reactions of the postdecision period can be extreme and range from anger to disappoint-
I :
8
PIERCE
ment, to depression, or to elation. Sometimes things tum out better than we expected and of course, there should always be room for these possibilities as well. An important point is that when patients take responsibility for their own choices and participate in the decision-making process, the outcome of those choices can influence the emotional and physical well-being. Certainly this is evident for family members who are sometimes put in the unenviable position of making decisions about terminating treatment or declining treatment for their loved one. Families making these decisions need the same care and attention to their emotional well-being in the postdecision phase, paying particular attention to unwarranted guilt or blame that may affect family functioning in years to come. Points to consider during the postdecision phase include: • How does the decision maker evaluate his or her choice now that the outcome is known? • Was the decision maker prepared for the possibility of untoward or negative outcomes? • How does the decision maker reconcile his or her expectations with what actually occurs? • What are the psychological responses to the decision outcomes? Analytic procedures are most helpful when there is a decision problem that is complex, with many possible alternatives and outcomes. In the ideal situation, a decision maker is provided the necessary support to arrive at a choice that is most likely to bring about a satisfactory outcome. Quality decision making seeks to ensure that the appropriate agents are involved, that we pay attention to equity and justice issues, that we attend to the cost and benefit considerations to all concerned, that there is procedural accuracy in the process, and that we seek a solution that is justifiable to ourselves, the patient, his or her family, and society at large. Such procedures are not particularly helpful when there is a great deal of uncertainty about a proper course of action or when there is a moral imperative to be considered.
Ethical Considerations of Clinical Decision Making The interesting question here is, "When does a clinical decision-making problem become an ethical problem?" Some of the following questions may be helpful to determine if we have an ethical problem versus a decision problem. These are important questions because they help determine what approach to take and identify the appropriate supportive personnel to bring into the dialogue. Most of us, when we feel ourselves shifting into an ethical problem, feel that we need to call for additional resources-an ethicist, the hospital attorney, or a social worker, among others. In sorting out these issues, it seems that clinical decision problems become ethical problems when there is disagreement among the team members about one or more of the following issues: • Agents: Who should be the decision maker? When the agent is the patient we might ask, "Does he or she have the necessary strength, will, or cognitive ability to process information and make judgments?" This consideration is also applicable for families under stress as well. How do we determine their capabilities for making choices on behalf of another? Families in these circumstances have the additional burden of trying to determine the wishes of another person and without an advanced directive, wondering if they are truly expressing the patient's intentions. When the family is in disagreement or reluctant to make such decisions, who then should become the surrogate and who should delegate this authority? • Responsibility: Whose decision is it? Whose voice is paramount in the declaration of choice? The decision rests most directly on those who must live with the consequences of the choice. It is one thing for health professionals to make a decision for someone whom they may never see again. We will not see the lived experience of that choice and will never know what it means to have one's life
WHAT IS AN ETHICAL DECISION?
inextricably changed by taking one path rather than the other. The burden of choice falls on those who have accepted the responsibility of the decision-making process. For nursing, this action directly involves us as well, because nurses must provide information, listen to, and counsel patients, even in an informal way. We have a greater effect on the formation of the patient's preferences than we might imagine, and this influence also makes us responsible for our conduct in these deliberations. Ideally, a decision maker is provided the necessary emotional and analytic support to arrive at a choice that is most likely to bring about a satisfactory outcome. For surrogates making end-oflife decisions, particular attention is required throughout the process to attenuate future remorse and regret. • Cost-Benefit: Who seeks to gain from the decision and who will incur the greatest costs (physical, emotional, spiritual, and financial)? These issues fall into the ethical domain when the cost cannot be justified on the basis of highly predictable and reasonable outcomes. In other words, it is when we cannot reasonably ensure that the outcome will bring about a sufficient quality of life that it is justified to invest tremendous economic cost or suffering. We see these situations with extremely premature infants whose conditions require enormous economic cost but also have an uncertain future with regard to their physical and intellectual health. At the other end of the lifespan, we have all questioned the seemingly unreasonable cost of intensive treatment for end-stage disease among persons with diminished cognitive abilities, advanced metastatic cancer, or the very aged when there is a very low probability of any gain in either quantity or quality of life. • Procedural Accuracy: A decision problem can become an ethical problem when an acceptable and straightforward procedure does not exist for selection of an option. This may be attributable to the experimental nature of the alternatives,
9
when there may not be enough evidence to suggest that the treatment will bring about the outcomes the patient desires, or when there is such uncertainty that the risk raises questions about the desirability of a particular option. Do we know what the likely outcomes might be for a particular treatment? Have we communicated the uncertainty involved clearly and honestly? Are we asking the right questions? • justifying Outcomes to Self and Society: Can we answer to ourselves and to others about our role and responsibility in a particular decision? There are times when an analytic procedure may suggest a choice that we would find distasteful in some way. For example, it may not be economically prudent to spend $1,000,000 on a very premature infant with multiple disabilities, but who is going to tell the parents that interventions are not warranted to save the life of their child? In such instances, the decision may be made in an analytically appropriate manner, but we do not like the answer on moral grounds, which seems to supersede the consideration of time, money, and effort. Rather, these decisions reside in a domain of our practice that is much more difficult to quantify and justify, but one which certainly needs insightful and committed dialogue. In sununary, the identification of an ethical decision problem, in my experience, is when at least one of the following is present: • When the decision maker does not have the necessary strength, will, or cognitive abilities to process information and make judgments, requiring the designation of a surrogate to act on his or her behalf (substituted judgment). • When an acceptable and straightforward procedure for selecting an option is not present (probabilities and utilities are not known for a particular treatment). • When the outcomes are uncertain and involve high risk and the cost is high in terms of money, time, stress, and suffering. This includes futile situations in
10
PIERCE
which interventions may have little or no benefit to the patient. • When decision analytic procedures suggest an option that human reasoning or emotions find unacceptable. • And generally, when there are conflicts among the agents concerning who will make the decision, how the decision will be made, whose values and preferences will be considered, and who will suffer or benefit from the consequences of the choice.
A Framework for Assessing Clinical Decision Problems A tentative framework of clinical decision problems is provided to help target the domain of the problem and help clinicians understand the contingencies that can affect the process so the proper resources can be mobilized (Fig. 3). The core elements of the decision problem are complexity and uncertainty. Decision problems that are less complex and involve minimal uncertainty are shown in the lower left quadrant of the figure. Situations that involve two alternatives that are rather straightforward and simple are really a matter of making a choice between one or the other option (A versus B), and there is little or no uncertainty regarding the outcome. These choices occur almost automatically because
the options are clear and there is little emotional involvement. As the complexity of a situation increases, more problem-solving behavior may be involved. Not all problems require that a decision be made; in fact, some of the problem solving may involve determining what treatments need to be considered, who needs to be involved, and whether or not a decision needs to be posed to a patient or family member. This form of problem solving is sometimes called "means-ends" in that one searches to find a way (means) of deriving a solution (ends). These problems are best addressed by clear and open communication and may not require any additional decisional support or intervention. Most of the decisions that consume a tremendous amount of our time and resources, in contrast, do so because they involve either a complicated decision problem with multiple options of varying uncertainty or because there are ethical considerations. Sometimes the boundary between a complex decision problem requiring some analytic intervention and those in a domain of moral behavior is less clear. Practitioners need the ability to recognize when situations have moral implications and when those implications include outcomes that might affect others (moral sensitivity); the willingness to place moral concerns higher than other concerns (moral motivation); and to have the strength, confidence,
COMPLEXITY • Ethical Decision Making (Moral Component)
• Decision Making
UNCERTAINTY~~~~~~~~~-t-~~~~~(A_n_al~~-ic)..._~~~-
• Problem Solving (Means - Ends)
• Choice (A'l'SB)
Figure 3.
Framework for clinical decision problems and approaches.
WHAT IS AN ETHICAL DECISION?
and ability to carry out moral behaviors (moral character).9 In some instances the two categories may interact as depicted in the upper right quadrant of Figure 3; a decision may be sufficiently complicated to require a more structured analytic approach and also be difficult for practitioners to carry out because of the morality involved. Some issues, in contrast, are emotionally difficult without being ethically or analytically complicated. It is rarely, however, that one engages in an ethical decision without the arousal of strong feelings and emotions. A comprehensive framework for ethical decision making ideally would include the following considerations: (1) the discipline and rigor of analytic models that tell us how to structure the decision when sufficient information is available to ensure that there is procedural accuracy and precision in the decision-making process, (2) the grounding and elegance of empiric models that describe what human beings actually do and think and feel when they make complex and stressful decisions (this calls for more qualitative studies of the phenomenon as we observe it in our practice), and (3) the support of moral reasoning that helps us make decisions that are consistent with our human and professional values. We need to work towards developing an approach that is sensitive to human needs and responsive to contextual considerations, understanding that each situation will be unique. The goal in learning more about the ways patients and their families go about making health care choices is, ultimately, to (1) help them become more efficient given their limited resources, (2) reduce the psychological stress of making the decision, and (3) help patients arrive at a decision that most accurately reflects their preferences and values. The advantages of a model or framework are that it provides a systematic
11
way of addressing these problems; it permits us to raise questions about how we, as professionals, provide decisional support to families in the midst of a crisis; and how we evaluate the outcomes of our interventions on the wellbeing of those for whom we care. ACKNOWLEDGMENT
The author acknowledges the intellectual contribution of graduate students in a course titled "Health Care Decision Making in Contemporary Society," including Vicky Debold, Michelle Llken, Cathy Weigel, and Michael Williams. Portions of this article were presented first at an American Association of Critical Care Nurses teleconference titled, "Supporting Difficult Health Care Decisions of Patients, Families, and Providers" on November 17, 1994.
REFERENCES 1. Cimprich B: A theoretical perspective on attention and patient education. Advances in Nursing Science 14:39-51, 1992 2. Cimprich B: Development of an intervention to restore attention in cancer patients. Cancer Nursing 16:83-92, 1993 3. Hospital Ethics: Hospitals establish policies to limit futile care. September/October, 1993, p 209 4. Landman J: Regret: Persistence of the Possible. New York, Oxford University Press, 1993 5. Lee DKP, Swinburne AJ, Fedullo AJ, et al: Withdrawing care: Experience in a medical intensive care unit. JAMA 271:1358-1361, 1994 6. Pierce PF: Deciding on breast cancer treatment: A description of decision behavior. Nursing Research 42:22-28, 1986 7. Pierce PF: When the patient chooses: Describing unaided decisions in health care. Human Factors 38:278-287, 1996 8. Scanlon C: Developing ethical competence. The American Nurse, March, 10-11, 1994 9. Schaefli A, Rest JJ, Thoma SJ: Does moral education improve oral judgment? A meta-analysis of intervention studies using the Defining Issues Test. Review of Educational Research 35:319-352, 1985 10. Wagener JJ, Taylor SE: What else could I have done? Patients' responses to failed treatment decisions. Health Psychology 5:481-496, 1986 11. Weinstein MC, Fineberg HY, Elstein AS, et al: Clinical Decision Analysis. Philadelphia, WB Saunders, 1980 12. Yates JF, Klatzky RI., Young CA: Cognitive performance under stress. In Nickerson RS (ed): Emerging Needs and Opportunities for Human Factors Research. Washington, DC, National Academy Press, 1995, pp 262-290 Address reprint requests to Penny F. Pierce, PhD, RN The University of Michigan School of Nursing 400 North Ingalls Ann Albor, MI 48109