1 Webcast October 26, 2006 Ethics, Counseling, and Professionalism, Part II Presented by: Chrisann Schiro-Geist and Emer Broadbent >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston. The subject today is Ethics, Counseling, and Professionalism. This is Part II, the sequel. We covered it earlier on May 10th and we've come back to respond to some questions and to provide further examples of situations that would be challenging ethically and professionally. A point of note first before we get into our presentation. Right now you're on our ILRU web page and connected to whatever audio streamer you're using, either RealOne Player or Windows Media Player. You can see today's handouts if you downloaded them in advance. This being live, there may be some problems you may encounter. For instance, you may get disconnected for whatever reason or there's going to be buffering of sound and sometimes that means you don't hear anything. 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But if there's no time left to respond to your question, we will forward it to the presenters and they will respond and return the question answered to us and we'll post it right here on this web page. Now, I'm very happy today to present Chris Schiro-Geist. Chris, I am so sorry. I mangled your name. >> CHRISANN: It's a long name. Both syllables are fine. >> LAUREL: And Emer Broadbent. Both of them are with the University of Memphis in Memphis, Tennessee, and they're going to discuss ethics in terms of factors which constitute professionalism. This presentation is going to be beneficial to an array of people working counseling positions, in both the rehab field and disability field. And this will include people who work at centers for independent living and roles of peer support and peer monitoring. This webcast is an initiative of the Rehabilitation Research Institute for Underrepresented Populations. It's headquartered at Southern University at Baton Rouge under the leadership of Madan Kundu and Alo Dutta. And we at ILRU and Chris and Emer at Memphis are part of the consortium or team 4 that is part of the rehab institute. Chrisann or -- Chris, I'm going to give it one more try, the long formal way -- Chrisann Schiro-Geist is vice provost for academic affairs at University of Memphis and full professor in counseling education psychology and research. Previously you were 21 years, right, Chrisann, at the Disability Research Institute? >> CHRISANN: I was at University of Illinois 17 years. >> LAUREL: Okay. And Emer, you were at that same university for a while, about -- several years as well. And you are now an assistant professor in the division of social work at Memphis U in the school of urban affairs and public policy. Chrisann is a regular person and you happen to be a JD, which tells us a whole lot. We're glad to have you with us and I'll turn it over to you to let us know about Ethics, Counseling, and Professionalism. Welcome. >> CHRISANN: Thank you. >> EMER: Thank you very much. Shall I start out, Chris? >> CHRISANN: Yes, sure. Feel free to get going and I'll jump in when the moment is right. >> EMER: Wonderful. This is a topic that's very dear to my heart. The notions of ethics as a guide to students with whom I deal on a daily basis and practitioners. 5 It's critical that people learn what ethics are, what ethical behavior is so that he or she can apply them to providing service to clients. But I believe and I think Chris will go along with me, that you need to know about ethics in context so I'm going to take a few minutes to address or to tell you the basic ethical principles and then do some contextual discussion. You can see from your power point the ethical principles are: Beneficence, which means it's important for us to do good. Nonmaleficence, and I remember maleficence from Snow White -- no, is it Snow White? Yeah, Snow White. The wicked person, the witch, was maleficent. >> CHRISANN: I think it was Sleeping Beauty. >> EMER: Maleficent was the witch in one of the Disney movies, so nonmaleficence means you don't go about doing bad things. Autonomy is the notion that people should be free to do what they choose. Fidelity has to do with being truthful. And justice, which has to do with being fair, treating equal situations equally. On its face that seems like something that we should all do. The problem is with definitions of what behaviors might be good, not evil and so forth and how do you balance between which ethical principle is most important and most 6 important to whom. And a little later, Chris will be addressing some case studies where we can turn ethical principles into practice. How am I doing as far as talking? Am I talking too fast? >> LAUREL: I can follow you. >> EMER: How is the signer doing? >> LAUREL: Pretty good. She'll scream if she needs to interrupt us. You have a good pace. >> EMER: Thank you. I'm working off of my power points, so if you look at the next slide, context of ethics and disability rehabilitation is mentioning six different issues that I would like to bring to your attention. The power theory, the bell shaped curve, systems theory, exchange theory, societal role, and research. As we look at power theory and again, thinking of professionals, we need to recognize what power is and who holds what power within the relationships where we interact with our clients or customers. And for the purpose of this discussion, I define power as the ability of an individual to make binding decisions. For example, I remember when I was working in a setting in a locked unit, one of my clients said he was leaving. He made that decision, but since the door was locked, he did not have the key, he did not have the power to 7 make that decision work. So we each had different levels of ability to make binding decisions. Holding the power is based on holding some or all of the following variables: Money or property. Certainly we see that in society. Charisma, which can be defined as perceived beauty or the ability to articulate and I define that quite generally. For instance, someone who has problems breathing has difficulty getting along because he or she may not be able to verbalize loudly enough to have his or her words heard. And certainly as research has shown, people who have impairments that are determined to be unattractive can be more disabled than others. And therefore less able to make binding decisions. History. If someone is known to be a prestigious family, that person may have more of an ability to make a binding decision. Or if the history says that a person with Down's syndrome cannot make good choices, then someone who has Down's syndrome will likely have less power. Intelligence certainly is a major factor in making binding decisions. >> CHRISANN: Or people's perception of your intelligence. >> EMER: True, true. Yes, of course. Do you want to elaborate on that? >> CHRISANN: I think historically there have been lots of people that unfortunately -- I think we're making 8 better decisions now. Too often our society has been too eager to take responsibility away from persons and not really investigate thoroughly whether they are capable of being independent and making their own decisions. I think it's a factor that we need to think about, perception and reality in terms of making binding decisions. >> EMER: Thank you. And that's also in the definition of disability from ADA. You mentioned and that reminds me of you either have or perceived to have or have had disabling condition X or Y. Thank you very much. Education. Of course, Chris and I are involved in the education industry and we certainly promote our product, but the more people know about what's going on around them, the more they know how to manipulate their environment because of what they have learned, the more likely they are to have the ability to make binding decisions about what to do with their environment. So with power -- within this theory, an impairment becomes a disability when the impairment is perceived to or actually diminishes one or more power bases. Do I need to talk about that a little bit? What do you think? >> CHRISANN: I think -- yeah, I think the connection between those five principles and this power thing is one that you can't stress too much. Because that's -- we're offering this to people. This is probably not the way 9 they think ethics is going to go, so I think we really need to explain to people why we're coming from the position that we're coming from on this. Not that ethics changes, but our approach to ethics is a specific one because of specific approaches instead of rattling off a code of ethics. >> EMER: As we are thinking of ourselves as professionals and our customers are clients as consumers of professional services, we need to recognize the power base that we have and in many cases, for instance as gate keepers or persons who are knowledgeable about a system to which the consumer would like to have access, we have more power than they do. We are not disabled. And it is because our consumers have less than what might be ideal of one or more of these power bases, that's why they come to us seeking counseling or assistance. So for instance, a person who is a VR counselor may have the knowledge gained through education, for example, to provide services to somebody who would like more education or who could make good use of additional money or who could maximize his or her intelligence. >> CHRISANN: I think, Emer, it's important to point out for people in the audience to who have a disability, that they be realistic about the fact that they may be perceived to have less power than they do even though they are counselors 10 or decision makers because of the conditions you are exposing them to. >> EMER: Can you explain that a little. >> CHRISANN: There are two issues. One is there is a disability that is self-evident. We still haven't turned society around, so we still have instances so even though the person with the disability is the power broker, the secretary is the one who the questions are directed to in the office, for example, because society hasn't totally understood issues around these things you're talking about. For people with disabilities who are less than self-evident, their disability may affect them, but they may be recused from their -- the issues their colleagues have who have self-evident disabilities. So those are all things that need to be taken into account in discussing the power base and ethics by power. >> EMER: What does recused mean? >> CHRISANN: Not held accountable for by choice. >> EMER: Okay. I defer to you. Thank you. Another thing to recognize is that disabilities often work together to multiply the negative effects. So let's say someone does not have an education, therefore he or she is unable to get a job that will help him to get more money and so the negative effect of those two things working together end up with that person being in less of a power situation to make binding decisions. 11 And yes, I'm glad you mentioned secretaries because it isn't just those of us who might be providing services that need to be aware of the important role of service providers. It's those who control access to the service providers as well. You know, never make a secretary unhappy is one of my cardinal rules. Okay. Moving on to the next slide, a disabling condition's effect on power, binding decision making, is noticeable when the power measured qualitatively or quantitatively is lowered at least one standard deviation below the mean power of each person in society. Each one of us is going to have a varying collection of power bases. And it's only when -- what is that sound? Chris? >> CHRISANN: I'm sorry? >> EMER: Is something rattling on your table? >> CHRISANN: Yes, sorry. >> EMER: And so as society goes, typically, the disabling condition is only recognized after it reaches a certain point. And in some cases, the power bases can work to yield a person who is not as disabled as he or she might be without the combination. For example a person with a lot of money may be able to easily acquire aides, people to help him get dressed, a car and so forth, whereas a person without money with the same mobility impairment would be much less able to ma I can a binding decision for instance to go out or 12 to decide to get him or herself ready for the day. Any comments or thoughts on that? Okay. Good. So the bell shaped curve, which is in the next picture, I've represented that lower threshold of disability as being somewhere to the left of what society considers an average ability to make binding decisions. It's people who have a lower than average ability to choose what they want that society tend to define as having a disability. I alluded to it somewhat before, but we as professionals need to recognize the differential power between staff and client. The folks who come to us for provision of services or counseling or whatever it is that we are providing are looking to us to give to them what they need and this is simply -- it's just simply part of the definition. Someone who wants something from us is in a lower power position than we are. And we need to be ethical as we consider what we have to provide and the method in which we provide that service. We remember that it's a naturally occurring difference and in many cases, we're the difference between getting and not getting something that a person may need to make his or her life happy, work well. So we need as we do our work to be ethical, to be beneficent, nonmaleficent, and so forth as we provide our services. 13 I'd like to go just for a minute to systems theory. There's a lot of wonderful thought on systems theory, but what we do as clients, consumers, as well as service providers in many cases are defined by a system. There are expectations that we have of ourselves and that others have of us. There are sometimes formal rules, oftentimes informal rules that dictate who does what within a counselor professional to consumer client relationship. Enmeshment has to do with people who become too involved, inappropriately involved with one another in a system. It's very important to learn what our place is and to respect boundaries, some of which are professionally prescribed boundaries. Certainly there is an opportunity to permeate, permeability, having to do with exchanging information and so forth with one another. And also homeostasis is a very interesting concept where whatever is is what assistance seeks to maintain. So for instance as we look over the history of disabling conditions and disability policy and so forth, there has to be a huge effort made to change what is. You know, we look at ADA and so forth thinking that's going to solve problems of employment discrimination and so forth. Well, yes, it's helped, but the system is going to tend to move back to the way things were before those powerful short-term changes were attempted. So those of us who are trying to work ethically to ensure justice, equal 14 treatment, need to attend to the fact that systems try to go back to the way they were. Okay. If we could move on to systems, ethical applications to rehabilitation settings. Actually I've talked a bit about fundamental fairness, formal and informal rules. Once again, it's our job -- and I'm speaking as a practitioner and certainly I think clients and customers need to respect informal and formal roles and rules. But as the more powerful decision makers, it's I think even more important that the practitioner be the one who focuses on fairness in establishing and maintaining the roles and rules that apply to service delivery. In addition there's a very important concept called Parens Patriae, which refers to the government as parent. So society says to us that if as its members have some kind of problem that we can't deal with, it will step in as our parent and attempt to look after us. We find reference to that in the constitution as the drafters of the constitution said that society would look after our health, safety and welfare. So part of our role as professionals is to act as the arm of the government as it attempts to serve the needs of its members in a parental kind of way. The way that those activities are regulated is through state regulations and professional and self-monitoring 15 and the state regulations and professional monitoring are guided by ethical principles. I think I've talked a bit about regulation clarification and Parens Patriae. As far as exchange theory goes, there is always, always, always a trade of goods between people: It's either tangible or intangible. In some cases, money changes hands. If I want to buy a sandwich at McDonald's, I give them my money and they give me a sandwich. If I want a service from the state, the state says if you fulfill a certain requirement, then I will give you some services. The exchange is not always positive. Sometimes there are behaviors which we exchange. Behavioral exchanging which are negative that get responses. And in that case, we as professionals need to step in and attempt to make those exchanges uniformly positive. But ultimately there is a balance of exchange and exchanges are always made. Once again, regulatory and ethical principles govern that exchange. As far as research, life is a smorgasbord and most poor fools are starving. It's a wonderful thing to learn about reality through research, which of course is done in an ethical way. Research is a search for truth and by the way, I teach research, so come on down. You folks who would like to take research. Ethics and related stuff. Professionalism is very 16 important for as professionals make a public declaration to the rest of society that they provide something that's of benefit to society. They also through proclaiming themselves professionals promise to self-regulate. A professional is confident in his special skill and has specific assigned duties to perform. And the professional group controls admission, discipline and training of its members. How is a profession different from a business? Fiduciary duty means that there's a contract or a covenant between the professional and his or her clients or recipients where the benefit is his -- of the client. Of course, we attempt as we promote individual autonomy to avoid paternalism. Obligations of a professional are altruism. Once again, you'll see ethics in that. To do good. Accountability. It's responsibility to do a good job, to have honor and integrity and respect. How am I doing, Chris? >> CHRISANN: Good. When you get to -- before we go on the slide that says ethical principles, let's take a count of how many repeat people we have so we can adjust. But I think it's really good that you're going this review and tying the theoretical stuff that you're talking about to the principles. >> EMER: Are there questions from the audience yet? >> LAUREL: Sorry. I had my mute on. 17 >> EMER: Are there questions from the audience? >> LAUREL: We're at a good pace, so please proceed. >> EMER: Great. As far as professionals go, it's critical for us in promoting autonomy for example to find out what the client wants. We don't want to project our own individual needs, individual hopes or wishes for them onto them. The ethical principal promotes finding what the client is wanting for him or herself. Another professional guideline is confidentiality, to be trusted to have that kind of justice to listen and to understand and keep confidence is critical. Except in situations obviously where others would be endangered and there's specific exceptions to that rule. Unfortunately, those -- the responsibilities conflict. You know, if for example, somebody is going to be a danger to somebody else and professionals aware of that, then it's critical to go for what's called the greater good, to promote the greater good by abridging those rights. Moving along. Spirituality is something that's been considered at least in my lifetime something of a touchy subject. As professionals, it's not our business to go about determining what a person's religiosity might be. It isn't our place to proselytize in a professional setting but it is critical for us as professionals who want to provide professional services to be aware of the spiritual needs and 18 characteristics of our clients and consumers. And so it is incumbent upon us to learn about the individual's spirituality and support and enhance his or her practicing of whatever his spiritual beliefs might be. And to make use of the spiritual support that he or she might have in his life. And we learn from literature that 84 percent of people in this country believe that spirituality is important. So one way for a professional to understand about that is to inquire. Ms. Smith, what is the role of spirituality in your life as it concerns this particular problem? So you allow that person to say no interest or allow for them to expand so that you can better be of use to them. Okay. Spirituality. In particular, I think it's critical to be aware of spirituality with end-of-life issues. Many of us may not be particularly concerned about our spirituality until we think we may be becoming a spiritual being. So it's incumbent upon us to become aware how we address spirituality. If the client asks. Never in an obligatory way. We're not in an professional setting to proclaim our own truth and the principle of doing no harm, nonmaleficence, applies. Another important context of ethical behavior has to do with the laws that govern our activities as professionals and I just want to bring to your attention the four major types of law. 19 Constitutional law, I've already mentioned dictates that the government, that society at large tries to look after the health, safety and welfare of its members. So we as agents of the government who have been licensed or certified by governmental agencies attempt to look after the health, safety and welfare of clients. Individual states may govern the things we may or may not do as professionals. Judicial systems also determine what we may or may not do in professional settings. And another type of law that people are not as aware of is administrative law. Huge influence on the lives of our clientele is maintained by administrative structures, such as social security, or vocational -- regulations of the state VR system. So we need to be aware of the requirements that we're to follow based on the laws that are telling us what we may and may not do. Of course, related concepts to that are agency and institutional policies. If I work for private agency, let's say, with a religious background, there are certain laws or regulations that we follow as we interact with clientele. Risk management is critical. Certain activities that we are involved with with clients have insurance implications. If we break certain laws, then our employer is liable for any damages that we might cause. So that's a 20 critical issue to consider. And, of course, there's always ethical regulations or guidelines. Some of which have been codified in codes of ethics. Now, ethics as we've outlined it, is right behavior as the ideal. The ideal is what's morally right, but the law is not always what is ethical. The law provides boundaries of right or wrong behavior and the diagram that I've presented to you shows that in many cases, legal and ethical activities are the same. But sometimes legal activities may not be considered ethical or ethical activities may not be considered legal. And it's in those settings where a training session like this with case models may be very important. Okay? So laws are established rules. Ethics provide a system for determining what ought to be. Risk management. Organization specific methodology, reducing risk or criminal liability. Great. How am I doing? Are we going fast enough or slow enough? >> CHRISANN: Is it time to take an assessment of anybody -- how many folks have -- are on their second try so that we can change it up a little? Which should we ask? How many of the folks in the audience have been with us before in the first presentation? Is there a way to tell that? >> LAUREL: Yes. 21 >> CHRISANN: We only want to know the yeses, I guess. >> LAUREL: We'll ask them to nod their heads. If those who attended the Part I of this session, send us an e-mail saying yes, that would be very good. That's how we could do it and it would be pretty quick. >> EMER: Laurel, how is that going? >> LAUREL: The pace is wonderful. >> EMER: Are we learning new stuff? >> LAUREL: Yes, it's different from before. I'm making notes. >> EMER: I want to know if people are not satisfied. >> LAUREL: We'll ask them to complete an evaluation. >> CHRISANN: I think, Emer, I could take them through the Dax case. That's the model we're running, right? >> EMER: Are you going to do that now or do you want to keep moving ahead? >> CHRISANN: Let's look at our time. I would say another five minutes and then we should get to the case piece because we want to do more on cases than we did the last time. >> EMER: Okay. >> CHRISANN: Five or ten minutes more and then I'll get into the Dax case. By that time, we'll know from Laurel 22 our repeats, so we'll go to different cases. >> EMER: Very good. Let's go to my next slide, law and ethics, which both address access to care, informed consent, which is a huge issue in research and practice, confidentiality, truth telling, we've already mentioned privileged communication, end of life issues, and professional duties. As professionals, we need to be aware of not only what we're doing, but there's a rehabilitation counselor or nurse or social worker, but what are the doctors and physical therapists up to and what are the professional needs that they are attempting to address in concert with us with the ultimate goal of enhancing the lives of our clientele. We also need to remember like it or not, the business interests of -- we need to do cost containment. Managed care is a huge, huge influence on delivery of care and provides ethical dilemmas to be balanced. Government and, of course, insurance issues. What professional, legal or financial interests are in conflict? And they are everywhere. Let's see. Financing issues, budgeting. Like it or not, someone is always paying the bill and there has to be a balance between what's just and right for society as a whole or all of the clients who may have an interest in receiving services from a certain agency and the one client. And so that's where the interdisciplinary team issues and rules and regulations and committees come in 23 to help govern what is going to be best for one as opposed to what's best for all. What I'd like to do is just a touch, particularly with the time factor, begin looking at the specific ethical principles again. Let's just go to beneficence. Problems in implementing. What is good? What's good to me is not necessarily what's good to you. What is harm? Who values -- or what values define good or harm? Religious values, scientific values? And, of course, what are the conflicts between what's good and what I know is good for you? There's beneficence versus autonomy. Fidelity, it's critical that we must be truthful. Autonomy, we must leave people alone. We must let them do what they want. But the conflicts between those could undermine the sense of community and the needs of the community. We can't let -- we as society can't let some people do everything they want to do because the rest of society will be harmed by it. Of course, there's the notion of unwanted touching that comes up in situations where people are held -- let's say people with psychiatric diagnoses and so forth are held without their permission. And then that leads to autonomy. Who decides whether you are I are capable of deciding what's right or wrong? Not easy. It's not easy. 24 We need to be just. We need to be fair. And on what bases may two cases be considered to be alike? I think that's -- I think I'm going to be done there. >> CHRISANN: Okay. >> EMER: I think I'll be done and I'm anxious to hear what you have to say, Chris, and hear what the students, the participants have to say. And I hope we have a good lively conversation. >> CHRISANN: Do we have a sense of how many folks might be repeaters? >> DAWN: Hi, this is Dawn. Right now I don't have a count as to how many are on the webcast, but we have two that responded and said they were on the previous webcast. >> CHRISANN: Good. We'll make sure we don't totally repeat everything, which I think we haven't been. But let's move from the theoretical discussions that you -- we've been having on the ethical principles: Beneficence, autonomy, justice, fidelity, and nonmaleficence. Those are the things you ever to remember and you can take out your cheat sheet and have them in front of you over and over again. That's pretty much what we have to do is make sure we know those principles and understand what they are. We said earlier that or we should have said or we will say, for example, that when we come to a problem in our 25 professional lives, it is usually because -- and we can't make an ethical decision, it's usually because two equally good principles are in conflict with each other. There are two good principles, the situation is good, but if we stick with one of the principles, the other one is going to be let go. And in a certain sense, it doesn't really make any difference which direction you go on an ethical dilemma as long as you can justify the decision you have made. So if you support one principle over another, you need to be able to justify. And by that I also mean document, why you made a particular decision over another decision. Let's take some of the real basic stuff, like a client is asking for a particular service and the service would cost 25 percent of your budget, your distribution. It's a perfectly good request. The client says, I want to set up a business a franchise. And the cost of that franchise is going to be blank and that happens to be a quarter of your budget. Well, they may be very smart, may have had training, may be capable of running that business, so being true to the principle of autonomy, we would say go for it. Here's 25 percent of my budget. Hmmm. This could be a problem because it runs into the conflict with the principle of beneficence. And there's a little bit of a justice issues here. Is it just to give 25 percent of my available funds to one client? Even if I know that client is going to be very successful, going to become a productive worker, own a 26 business, bring back taxes and good things to society, et cetera. So if you decide to give the money -- of course as Emer pointed out, there are issues like administrative rules and principles that come into play also. But if you make the decision to give the money or withhold the money may be irrelevant as long as you can justify why you made that decision. And you need to document why you made that decision when you think there may be an ethical issue at play in a particular case so that should there be a problem later on, you can come back and say, you know, these were very good choices and this is why I made the choice over another choice. That's what happens in our professional lives. You may have noticed that we are not in this presentation nor do we have any intention of in this presentation going over a particular code o ethics. And I just want to say that up front. I guess we should have said that way up front, but I'm saying it now anyway. That's because you all come from different professions. For example, I'm a license psychologist and Emer has a background in social work and law. If we were to pick a code of ethics, that would be a waste of time of the other people on the call. You're all capable of reading your own profession's code of ethics. >> EMER: And good luck staying awake through it. 27 >> CHRISANN: But the ethical principles and cases we want to analyze and talk about are what it's really about. When you get down to it you're the one responsible for the decision you make in an ethical dilemma situation. You're responsible to your clients, yourself and society. Follow your codes of ethics, read them, you probably signed off that you were following those codes and they all will have the things we're talking about embedded in them. The codes are not at important as understanding ethical behavior. They're really codes of practice, not codes of ethics. >> EMER: Although as you look at the codes, the profession in many cases has resolved a dilemma. The one that comes to my mind, as I think of the balance between me and a client, it seems to me that it's not a good idea for me to date a client, right? Would you say so? >> CHRISANN: Well, what would be the ethical principle that would be violated? >> EMER: Equal treatment. >> CHRISANN: What about the autonomy of the client? They want to date you. >> EMER: But they should all have the opportunity to date me. Ha, ha, ha. But what I don't recognize by dating my client is the imbalance of power that's in that relationship. I'm a gate keeper for services and that person didn't come to me for a personal relationship, they came for a 28 professional relationship. So yeah, autonomy, I think is breached, justice. >> CHRISANN: Fidelity. >> EMER: Beneficence. Maybe I'm a good date, maybe not. That seems clear to me, but obviously if you look in the papers, if you look in case histories, case studies, some people it's not that clear to. >> CHRISANN: But the point I'm trying to make is if you look at the core code of ethics that rehabilitation counselors follow, it will say you can't date until five years after you have served that person. If you look at the general counselor education code of ethics for all other counselors including rehabilitation counselors, it says two years. It doesn't make any difference whether it's two years or five years. Which code of ethics are you going to pick? The more important principle is maybe you should never do it at all. Two or five years is something that the particular board sat down and picked some years. The more particular thing is at what point am I doing more harm than good by changing the power basis? >> EMER: But the codes come forth when the issues are not dealt with in a clean way by the practitioners. So professional boards take it upon themselves to step in and say, this is what we say you can and can't do. >> CHRISANN: I'm not saying we shouldn't have codes 29 of ethics, but they're really codes of practice. One is three more years than the other, the practice may differ. The principle is because of the power base issues and autonomy and beneficence issues and justice issues, et cetera. That's the point I'm trying to make. If you go to the case analysis piece, when we have a case in front of us, how do we apply the five ethical principles to the case? This particular method which is referred to is one that was designed to for clinical settings, but you can adapt this to an administrative setting also. First of all, there's a multitude of facts and values, a need for a rapid decision. We're taking an hour and a half to talk about. A lot of times the decision has to be made in ten minutes, especially if it's something that affects life and death kinds of issues. Or certainly rapid in the sense that you don't have time to do a lot of research. And the need for concrete and direct answers. So there are four components. We want to look at the critical implications of the case, quality of life issues and the contextual features of decision that needs to be made. So when we're looking at clinical indications, we want to consider each condition and the intervention that we might come up with and ask does it fulfill the goal of our rehabilitation situation and with what likelihood. For example the case about whether to put 30 25 percent of your money on one client. Obviously that person would be rehabilitated and back to work and doing just fine. What's the likelihood the person has been through a training program and able to start a small business. It wouldn't be a futile decision, but still is it the right decision. Client preferences. What does is client want? In this case, sure the client wants you to put the money into the franchise. Does the client have the capacity to decide? It's a big decision. Hopefully they have had the training and background to make that decision. Do the client's wishes reflect the process that is informed, understood and voluntary. In this case it better be. Many of this issues that come up before you depending on the setting you're in have to do with quality of life. What is the quality of life of the client and how will it be changed by the decision that is made? Do you believe and does the client believe in the decision that's going to be made in terms of quality of life issues. And then as Emer has been stressing for you, what are the social and institutional -- we all belong to institutions, agencies, et cetera. How do they influence the decision and how should we be influenced by the decision? We've all probably known colleagues who quit jobs because they felt that they were going to be forced into making what they considered an unethical decision. We hope that doesn't happen. We hope our 31 employers understand the five principles as much as we want them to, but sometimes there are pressures that are external and that is left up to each individual person in terms of will they follow the policies of the company or agency, can they live with them, or do they have to make a decision to move out of that situation. So in the case analysis approach, we need to do what is at issue, where is the conflict, do we have similar cases that we've dealt with or heard of, because often the best thing we can do is to have had other experiences and transfer those to the new experiences. Are there precedents or paradigms or legal cases? Are there cases that have come up within our agency already so we have a pseudo decision made. Does this case differ from the paradigm and if so, are there any moral issues connected to them? So we need to repeat the Dax case even though there's a couple of you that -- I'm not going to say bored because it's an interesting case. This is a classic case that's used in most ethics classrooms about medical ethics and right to life issues. But it's a good principle for any study we do today. So if you turn to the one that says Dax case. In 1973, Dax Cowart, age 25, was burned in an explosion. He was found to have burns over 65 percent of his body. His face and hands suffered severe burns. Note that it was 1973 and even though the ethical principles stayed the same, a lot of 32 details would be different if there were a case we were dealing with in 2006. So put your mind into the perspective of 1973. If you weren't born in 1973, fantasize what life was like back in the '70s. You've probably seen something on TV or in the movies. Think about the contextual issues for a 25-year-old. And the circumstances, the medical circumstances that are also part of this case. And let me just give you a little more background about it. We're in Texas. There's an explosion. Dax and his father were in the real estate business and they sold land and they were out looking at property when they ran across a line that exploded. The father was killed in the explosion. And Dax was very severely burned at a level in 1973 where if you had 65 percent of your body burned, you were in big, big trouble. Very close to death. He also was severely scarred. His eyes were damaged and he had a very sever vision loss and he also really for all practical purposes lost the use of his hands. And full burn therapy was instituted. After an initial period during which his survival was in doubt, the father had died, he was stabilized and understood went an amputation of several fingers an removal of his right eye. During much of his 232 day hospitalization and at Texas Institute for Rehabilitation and Research in Houston and six months at University of Texas Medical Branch in Galveston, he repeatedly insisted that 33 treatment be discontinued and he be allowed to die. Emer and I have done a much longer version of this presentation where we played a video that was made of this real client and he was in excruciating pain from the treatment. The treatment was very painful. But back in 1973 without that treatment he would have surely died. He wanted that treatment to be discontinued so he wouldn't have to be in pain anymore and wanted to die. So think about the principles that are involved here. We have the autonomy of the patient. I don't want to be in pain. I've suffered, severe disabling condition, severe impairment. I really don't want to go through what I have to go through to become somewhat functional again without even understanding what that might be. We have the fairness situation, very costly treatment. Justice issues, lots of cost to this treatment. A year in the hospital for all practical purposes, plus. More than a year in the hospital. The cost of that to society. >> EMER: Staff intensive. >> CHRISANN: Yes. We have some greater good issues in terms of cost also. The justice of the cost and how many more people could be saved using those same resources, et cetera, et cetera. Okay. Despite this demand, wound care was continued. The hospital did not pay attention to his 34 autonomous request that treatment be discontinued. He was discharged totally blind with minimal use of his hands, badly scarred and dependent on others to assist in person functions. Let's look at issues. Beneficence versus nonmaleficence. What good was accomplished? Well, Dax's life was saved. What harm was cause? He did not want to be saved. He did not want the pain. Autonomy versus fidelity. Were the wishes respected? Did he have the capacity to decide. He's been through a horrible situation, lost his father. He didn't know what being disabled was so what we could do as a person with total vision loss or limited use of his hands, et cetera. Clinical indications. Let's look at clinical indications of the case. After emergency treatment the prognosis for survival was only 20 percent. So if you took him right after the incident, 80 percent chance he would die anyway. After six months of treatment, however, 100 percent chance that he would live, but with a lot of pain. If the refusal of wound care, that's 100 percent. Would have died of infection. Client's preferences. The doctors assumed the burn limited the capacity to make decisions. He's so mentally disoriented from this that he's not going to be able to make a decision about whether to live or die. However scientists confirmed he did have the capacity to decide. This is from the decision makers perspective. Could Dax -- could he really know what life would be 35 post rehabilitation, having not been involved with people with disabilities himself. From a quality of life perspective. Prior to the accident he was an athlete, outdoors man, exVietnam fighter pilot and worked in real estate. He was profoundly depressed during treatment. He says that very clearly on the tape and we experienced a lot of circumstances when we watched the video. He would experience mobility limitations. Contextual features. Well, father has died, but there is a mother. She urged progressive treatment for religious reasons. She also threatened to sue the hospital if they followed his wishes and discontinued treatment. Legal issues were unclear in 1973. This was before people did their personal statements about what they wanted done. This helped provoke the situation now where you can't hardly get admitted to a hospital without a plan for who is going to make decisions for you should you have problems. Insurance or personal funds did cover the cost of care, so that wasn't an issue in this case. But his refusal affected staff attitudes towards his care. The personnel in the hospital are not excited and certainly in this case about forcing somebody to receive treatment they don't want. He doesn't want to be compliant and helpful. They know that and so the attitude from the staff was very significant, however they did continue with the treatment. 36 So the autonomy issue. Is this an abstract thing or is it real? Does a person really have the right to refuse treatment if they are mentally capable of that? Actually a confluence of situations about preferences and quality of life, et cetera, the role of the mother, the doctors and lawyers, et cetera were critical in the decision that was made to not grant autonomy. So when you have to make these decisions, develop a reasonable solution. If you are involved in the decision like this or any ethical decision. Marshal the facts, evaluate the facts. Project the outcomes of various options. What will happen if we do this or that? Search for precedents. In '73 there were none. Develop understanding of the case. Sometimes these are quick decisions that are needed. And then come to your position on the case and as I said, be able to document it. In our rehabilitation goals, we want to avoid harm to the client. We also want to relieve suffering and dysfunction, prevention of secondary conditions and promote the quality of life. Can you do all these things at the same time? Certainly this case was very, very difficult. Issues need to be looked at about the acuteness of the decision that has to be made. Are there reversible pieces to this or can you only go one direction? And try not to confuse the issues with each other. In the case of would the course of action be 37 futile? Would we spend a lot of money have not a good outcome in any case? And, of course, if the person has actually refused resuscitation or CPR, now we know about that, but we didn't in this case because of the circumstances. So those kinds of things usually are available to us now. And as I mentioned before, document, document, document. So that you can respond to why you have made the decisions that you have made. Now, in the Dax case, and the movie that we saw at the end of it, the movie was made several years after, so we actually see Dax. As we said, it was made several years after. He went back to work. He was independent. He got married. He learned to adjust to his disability and has support from his disability. And at the end of the movie, they inquired of Dax, if he had it to do over again, would you have still refused treatment, and his answer was yes. And he was angry, even though from our perspective, his life has readjusted itself, he still said that if he had to do it over again, he wished that his autonomy had been supported. So an interesting one. Any questions at this point? >> DAWN: We do have two questions. The first one: What is the most important ability a peer advocate told to be that real professional assistance for that other person's efforts? 38 >> CHRISANN: Emer, do you want to take that one? >> EMER: State it again. >> DAWN: What is this most important ability a peer advocate must hold to be real person's efforts? >> EMER: I didn't understand the question, Chris. >> CHRISANN: If a person is a peer advocate, where do they fit into the picture? Another person with a disability, how do they fit into it? How does that change the decision, I think is what we're getting at. >> DAWN: This same person sent in another question. Maybe it will help. How can a peer advocacy for another's effects be best successful? >> CHRISANN: Could you just spend a few minutes talking about peer advocates and I think maybe from a legal perspective. >> EMER: You're saying that to me? >> CHRISANN: Uh-huh. >> EMER: Peer advocates. Well, a couple of things come to mind. A peer is not going to be in a decision making position. Is this -- >> LAUREL: Emer, what it may be is there's a -- in Centers for Independent Living, there's a position that's called mentor or peer support or may have a totally different name altogether like independent living specialist, but the job duties include being a peer mentor, a peer counselor. So 39 let's assume it's a position, a paid position in an organization. >> EMER: Okay. You caught me off guard. >> LAUREL: Sorry. >> EMER: The thing that comes to my mind is preserving the autonomy of the individual. So a peer it seems to me -- and, Chris, please support me in this if I steer them wrong -- a peer would be to collect all the information necessary for his or her colleague to make an informed decision. >> CHRISANN: Yeah. I would say that that's exactly where the peer mentor could be most helpful and part of the case analysis where we are talking about getting all the facts. The person theoretically the person who is the peer mentor whether paid or unpaid, is something who has a perspective on disability because they have lived through it. I think one of the real pay-offs would be assembling information for a good decision. I think ultimately all the same principles apply except there's no code of ethics to refer to. Unless there's a peer mentor association, the one thing that's missing is the part that Emer talked about, where some of the decisions are made already for you. You could adopt a code of ethics that you like, but the piece that would be very helpful would be a peer mentor's ability to help gather data because they've been 40 there, been through it, really had to deal with systems and administrations and stuff like that and could help gather from a different perspective. Maybe even a broader perspective. The principles still apply though. >> EMER: But how difficult to stand back and allow someone to make their own choice. >> CHRISANN: So it might be harder for the mentor, maybe they have been there and knew that wasn't the direction to go, but they have to hold their tongue and support the person in the autonomous decision they make. We're going to do a couple of quickies, I think. Telling and withholding the truth. Here's a case I want you call to consider and give responses to and Emer and I will process it. Mr. and Mrs. J have a four-year-old with cystic fibrosis. They seek a counselor about having another child. The tests show that Mr. J does not carry the CF genes because he is not Jimmy's biological father. What is the risk -- what percentage chance is there of our having another child with cystic fibrosis? Because of the nature of the testing, the DNA results are there and the answer is zero. Because both parents have to have the recessive gene. Because Mr. J is not the biological father, he cannot pass on the disease. Take a minute and give a sentence on what the J's should be told. 41 >> LAUREL: Just on your -- folks, if you would pull up e-mail, click as if you were going to ask a question, and just jot down what you think and send it on, we'll review it. A question, guys, just while we're -- >> CHRISANN: Bring up some of the ones from the last time. >> LAUREL: I've got a question that -- an incident that occurred when we were working doing management training with people who were supervisors at peer centers and some were large programs. This was an instance involves a peer support counselor or mentor working with a woman who was deaf. A lot of exchanging were done via TTY. In this case, the TTY was captured on tape. It could either be run across the lights and you read it as you go or it could be captured on tape, which I like. But the discussions had to do with the woman was going through a divorce situation and there was contesting who would retain -- with whom the children would go. It was very difficult and very bitter. Some of the exchanges that the deaf woman had with the counselor were intimate and pertained to that and were captured on tape. Now, there was -- the tapes were subpoenaed. My question is: What is the recourse of a counselor in those situations? >> EMER: Well -- 42 >> CHRISANN: That's a confidentiality issue. Unfortunately, counselors are not protected by confidentiality laws. If there is anything to subpoena and it is subpoenaed, it has to go. It's not even an issue. There are very few situations where confidentiality is really protected. Physicians, lawyers and ministers, period. And that's it. So counselors -- there have been cases where counselors were -- the issue of confidentiality for counselors was brought up and it had not been supported by the court. >> EMER: But let's say it was a hearing person and the counselor could have a lapse of memory. >> CHRISANN: Interesting. If there were no paper, what would the difference be? Good point. >> EMER: What's the answer, Doctor? >> CHRISANN: If there's a paper, can you lie about the existence of a paper. It's much easier to say I don't remember or I'm not sure than deny the existence of a record. >> LAUREL: I guess it gets to was it a significant document or just a convenience? >> CHRISANN: When we teach our counseling classes, we say minimal notes. You don't need a huge amount of detail. You just need to document to -- >> EMER: Jog your memory. >> CHRISANN: Good memory and meager notes is probably the safest way to go. Unfortunately our society is 43 totally tied up with lawsuits. Did we get any responses from anybody yet? >> DAWN: Not at this time. >> LAUREL: We don't know what to say. I'm interested. What do we say? This is difficult. >> CHRISANN: Let me tell you how it's been handled other times we have done this. Of course, if you take it literally, what should the J's be told and there is a correct answer and that is the chance of having -- of the two of you having another child with cystic fibrosis is zero. That is the minimal response. We can identify issues of autonomy, confidentiality, issues of justice, perhaps. Of course, we don't know all the circumstances. But usually when we look at this case, we look at it as though both Mr. and Mrs. J really think that he is the biological father. It's not something they withheld, but something they -- they're both presenting as though they believe he is the father. And this is a piece of information the counselor unearthed accidentally. You can have multiple answers. But there's a justice issue. Perhaps he will -- they will make a decision that won't be a good decision based on the lack of complete information. Maybe she'll think that that means there's no chance of passing this gene on and she might have another -- maybe 44 this person dies and she has another marriage and produces another child which she might not have chosen to produce. Maybe there isn't full disclosure. Maybe Mr. J is not aware that he is not the biological father and would make different choices in terms of supporting this child and the family if he were aware they were not the biological father. So the neat thing about this case and it's one that people can take home or to work and discuss with other people because it's not just a rehab case. It's an interesting case of autonomy and beneficence, et cetera in that there more answers. One of the ones I got from a group of students a while ago was the counselor would -- interestingly these were female students who thought they would give that information to the woman only and let her decide whether to share it or not. I thought that was a little lopsided. >> LAUREL: This woman here was thinking the same thing. >> CHRISANN: So I think the interesting thing about this case or some variation of it is that because it isn't just specific to one profession you can have the decision and it highlights so many of the issues and cases that we deal with. Are we close to being out of time? >> LAUREL: Regrettably we are running to the end and need to wrap. 45 >> CHRISANN: We should get to the summary session? Emer, do you want to do that or do you want me to? >> EMER: Please. Would you. >> CHRISANN: If you go to the summary page, you need to know what you're talking about in terms of ethical issues whether you're a peer counselor, master's level counselor, psychologist, social worker, et cetera. Communication is essential to resolving the disputes. Ethics committees and the ethical case studies books that are out there and ethical codes out there are very important in educating professionals, setting policy, reviewing cases, et cetera, but the bottom principle is know the five principles and use them and identify them in a situation. And when you can say oh, I know why I'm having trouble answering this, it's because it's autonomy versus justice, you will make a better decision. Emer, you probably have some summary comments and I think we're done. >> EMER: Go and be fair, people. Go and be fair . That's all I have to say. >> LAUREL: This is one of those squirmy webcasts you worry about. What people need when they're in a difficult situation. I like the way it was presented on Emer the background and adding on top of that the case studies to illustrate. 46 Thank you both very much. It's really difficult. And there are times I'm sure in every counselor's life situations like this. Like the schoolteacher saying they didn't teach me this in school. >> CHRISANN: So we are hoping we taught the five principles and that's the bottom line. >> LAUREL: Thank you very much for this and we want to -- in closing today we just have a bit of closing remarks just in terms of credits. It's real important to acknowledge the support for this webcast and because it's not a fourth of anybody's budget, but a significant investment both Chris and Emer on your time and on behalf of the project itself. This is a project of Rehabilitation Research Institute for Underrepresented Populations and that's the one at Southern University with Madan Kundu and Alo Dutta. There are complimentary webcasts done before on cultural diversity and so on right there on the web page. We urge you to look at those and listen to them. They're quite good. We also -- I wanted to bring your attention to the evaluation link on our home page and we would welcome very much any comments that you care to make on the presentation, on the content, on the pace. We're also very, very interested in the access issues, the ease of use issues, any way to improve the process of delivery the mechanical end of delivering a webcast. So please help us out with that. 47 And also I wanted to acknowledge the role of NIDRR, the National Institute on Disability and Rehabilitation Research. These are funds that NIDRR has allocated in terms of meeting the needs of people who are from underserved populations, both meeting the needs of people who are consumers as well as those who want to -- or engaged in the professions in rehabilitation. It's a part of Title VII and the funds are administered through NIDRR. So bless the Rehab Act -- I mean, Title II of the Rehab Act. Chris and Emer, again, we're mighty grateful you took the time to do this and thank you very much. >> EMER: Thank you very much. >> CHRISANN: It's a topic we like to talk about. >> LAUREL: And to our webcast team, which includes Rob Dickehuth with the center for collaborative and intensive technology and Melodie Thompson, today's captioner, thank you both very much. And at ILRU, our web team consists of Marj Gordon and Sharon Finney, Maria del Bosque, Rose Shepherd, and Dawn Heinsohn. And Dawn, thank you for handling the questions and comments today. So now that we close, we urge you to check back and see other webcasts. Please check our archives for ones that might be of interest to you. And at Chris' recommendation, we're going to look into the possibility of CEUs. Those of 48 you who might care to -- if we're able to get those, give us a -- send us your contact information and we'll provide you with the information yes or no or what we come out of it. So Chris, thanks for that information. >> CHRISANN: I hope that works. >> LAUREL: Meanwhile, from all of us here in Houston at ILRU, thank you for joining us and we'll see you next time. Good-bye.