Ethics, Counseling and Professionalism. Presenters: Chrisann Schiro-Geist and Emer Broadbent. >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston and we're gathered today for a presentation on ethics, counseling and professionalism. And today is Wednesday, May 10th and it's 2006. We are going to have a presentation from our colleagues at Memphis University, Chrisann Schiro-Geist and Emer Broadbent. Before we get started, a couple of points of navigating this webcast process. One is you are right now connected to the ILRU page of the webcast and we've posted information there pertaining to the presentation, the bios, overview and so forth. It also has the link for today's -- how you can hear today's presentation. So you're also connected to this by a Media Player and it's going to be like either RealPlayer or Media Player, Windows Media Player and that's the way in which you're hearing this audio and seeing the captioning in realtime. 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We're here and we're ready to provide support. And what you're going to find instead of the captioning, that's going to be converted into a transcript so you'll have that available to you as well. Now, one last bit of business, down there on your Media Player, you're going to see a message that is something like click here to submit questions. And if you click there at any time during the presentation, you've got a question, or you want to add a comment, you click there and it will bring up your software program, whatever that is, your E-mail program and it will be preaddressed to us. And you just simply write your message in there and click it and it will go to one of our folks and then when Emer or Chris requests questions, then we'll read it aloud and just in case you submit one and there is not quite enough time to respond to it, we'll forward that question to our presenters and they will answer it and send it back to us and we will post it on this very page. So you want to check back occasionally on that one. So enough of business. Today's presentation on ethics, counseling and professionalism, we have Chrisann Schiro-Geist and Chrisann you're going to have to correct me if I mangled your last name. >> CHRISANN: No, you did a really good job of it. >> LAUREL: Texans can do that. And Emer Broadbent. Chrisann -- well, may I call you Chris? >> CHRISANN: Please. >> LAUREL: This is the vice provost for academic affairs at the University of Memphis and a full professor in the department of counseling, educational psychology and research. And previously, you were with the really pretty well known University of Illinois Urbana-Champaign for quite awhile. >> CHRISANN: Yes, I actually technically retired from the University of Illinois and this is my retirement job. >> LAUREL: Isn't this great. >> CHRISANN: It's a great job for retirement. >> LAUREL: And were you 17 years with the Disability Research Institute, the last four years you were a director. >> CHRISANN: Yes, I was a director for a majority of the time that the DRI was in existence. >> LAUREL: It's a good program. And Emer, you are also now with University of Memphis, assistant professor in social work division. >> EMER: Yes, ma'am. >> LAUREL: And you worked also for DRI at the University of Illinois Urbana-Champaign. >> EMER: That's correct. >> LAUREL: And you also have a degree in -- are you a practicing lawyer or a degree in law? >> EMER: I have a degree in law, but I'm a social worker by heart and by training. >> LAUREL: Just an acknowledgment of this program, we are a part of the -- it's Rehabilitation Research Institute for Underrepresented Populations. It's administered -- it's a grant program located at Southern University in Baton Rouge under the leadership of Madon and it's a wonderful program and you'll hear more about it at the end. But for now I think we need to turn it over to the two of you and listen to and learn more about ethical principles as they pertain to counseling and presumably other things as well. I'm taking notes, guys, so if I can turn it over to you now, that would be great. >> CHRISANN: I think -- I'm going to just start out by talking about where we're at philosophically on this issue of ethics and especially as it relates to special populations to diverse populations to issues connected with people with disabilities, et cetera, and the professionals that serve them. Because I think it's reasonable to assume that most of the audience are going to be people who are connected to people with disabilities in some way. Our profession has been very committed, especially in the last decade, to making sure that we include in our practice of disability and rehabilitation ethical principles and that we deal with our clients and the persons with disabilities that we're connected to, whether it's in a counseling or other service provision fashion from an ethical perspective. So sometimes people think that means, well, I'm a CRC or I'm a nurse or I'm a social worker and, therefore, I have a Code of Ethics and I read that. I sign off on it when I take my certification test and that's pretty much it. And I think what we want to bring to you in this hour, especially when you are working with vulnerable populations and diverse populations is that ethical practice is way, way more than a Code of Ethics. As a matter of fact, the Code of Ethics is a very minor part of ethical practice and I'm not speaking against codes of ethics because I think we need them, but codes of ethics are usually codes of practice. It's how to be a rehab counselor or how to be a nurse or how to be a social worker, not how to practice ethically, and what we want to work with you for this period of time is to alert you to what real ethical practice is about and as I said it goes way beyond the code. And so that's why we must understand ethics and ethical standards because we can get our code out and point to part 4, subsection 2.1 and Reid how to do fair billing or you know how many years post delivery of counseling we have before we can start a personal relationship with a client. Those are all matters of field practice. They are not what this presentation is about, which is ethical practice. So I'm going to refer you to the core ethical principles, which we're going to say as many times as we possibly can in the next hour so that you get them and memorize them. And then I'm going to let my colleague, Dr. Broadbent talk to you a little bit about the reasons behind the need for ethical behavior. There are four basic ethical principles. If you were taking a formal course in ethics from a philosophy department, these would be the things that you'd have to memorize to pass the final. And they are beneficence, which is doing -- doing good and doing the best -- making the best choice for the greater good of the group. Nonmaleficence which is do no harm. So male in Latin means bad or evil. So it's nonbad. Now sometimes that's a little confusing because what's the difference between doing good and not doing evil? But I think you can see that there is a distinction between choosing to do good and not doing bad things if you really think about it. And sometimes there is going to be a conflict between those two issues. As a matter of fact, oftentimes there will be a conflict among the ethical principles and that's what creates an ethical dilemma. A dilemma is when -- since these are all important principles, when two of them are in conflict in the choice that you have to make about your work or your client or a decision that you have to make, when they are both in conflict because they are all good principles, you have presented to you an ethical dilemma. The next principle is autonomy, which is Cherishing and supporting the right of an individual to make their own decisions and I think we all know how important that is in working with any kind of vulnerable clients who often are not given the choice to make decisions on their own. So supporting the right of an individual to decide their own fate is a very, very critical part of understanding ethical practice. Fidelity is just what it means. It's being faithful, being faithful to principles and commitments that you've made, honoring contracts, honoring agreements and then the last principle which is justice, which is fairness. The principle of fairness. So what we have is beneficence, which is do good; nonmaleficence, which is do no evil; autonomy, support the right of the individual to choose; fidelity, be loyal; and justice, be fair. And if you can really commit to the those five principles and base your practice with your clients on those five principles, you will be an ethical practitioner. But I want to warn you that sometimes in supporting autonomy, the right of the individual to choose, and in also trying to support the greater good, beneficence, you may end up with an ethical dilemma and that's what we're here to help you understand that those things will happen, that you'll be faced with those dilemmas and that you'll have to work through them in some way and that's pretty much what the heart of the discussion is about. So I'm going to let Emer talk to you about some of how we got to need these principles in the first place for awhile. And then I'll be back. >> EMER: Thanks. If you could turn to your next slide or move down on the word document. What's critical about ethical behavior is figuring out how to be ethical within a context. And so what we have here are some theoretical bases to think about your practices. So actually on the PowerPoint we've listed power theory, bell shaped curve, systems theory, exchange theory, societal role and research. So what I'd like to do is go through those just for a little bit and have you be thinking about these issues, beneficence, nonmaleficence, autonomy, fidelity and justice. The way we've defined power is that it is the ability of an individual to make binding decisions. Power is based -- or the holding of power is based on the resources that a person has at their disposal; and in many cases we'll find categories of these bases within money and property, charisma, having to do with perceived beauty or desirability, issues such as can a person speak clearly and so on and so forth. History, too, is an important basis for power. What is the community's experience with someone like you? What is the history of the community's interaction with, let's say, a person with cerebral palsy or perhaps the Schiros in the community. Are they a respectable family? Intelligence, of course, is central to a person's ability to make a binding decision. And many times with our customers and clients, we see people who have less than -- perhaps less intelligence or less ability to express their intelligence than others in the main population. Education, of course, is the experience someone has that allows them to maximize their intelligence. Now, you may think that power is a little too general, but if we move on to what we define as an impairment, an impairment becomes a disability when the impairment is perceived to or actually diminishes one or more of these power bases. You can see how a person with a disability is going to become disadvantaged in their ability to decide what they're going to do. And it's at that point when that person is likely to come into contact with one of us as a professional or a paraprofessional who needs to be thinking of how to deal with a person with diminished power in a way that is doing good, not doing evil, that maximizes their ability to choose, where we can be trustworthy and fair. I'm sure also those of you who are agency-based in particular will see that when an individual has more than one of these power bases that are less than maximized, that the disabilities work together to multiply the negative effects in power utilization. For instance, someone who is not able to articulate, who doesn't have any money is much more at risk, let's say, than somebody who does have cash flow that people will pay attention to when he or she makes a binding decision. We move on into defining the power theory by using the bell shaped curve. And those of you who have some statistical background will recognize the bell shaped curve. You may or may not be happy to recognize it, but it provides an excellent model for thinking about whether people can make their own decisions. And I'd like to read this definition. The disabling condition's effect on power, which is binding decision-making, characteristic held by its holder is noticeable when the power is lowered at least one standard deviation below the mean power of the average person in society. So each one of us has a combination of characteristics that give us the ability to make binding decisions. And when one or more of those characteristics makes us much below the average inability to decide is when the society at large begins to recognize that we have a disability. Actually it's a theory that Dr. Gies t and I have been working on for years. And we recognize this in definitions of -- what's the current definition of trainable? Developmental disability -- one of the characteristics is trainable and educable. >> CHRISANN: Those are the terms. >> EMER: When you look at the definitions, you will see when someone is trainable or educable, that those measure the person's intellectual -- >> CHRISANN: You're talking about mild vs moderate. >> EMER: Those coincide with places on the bell shaped curve. >> CHRISANN: Mild, moderate, severe to profound. >> EMER: Thank you. I'm not up on -- >> CHRISANN: You're a social worker, and not a psychologist, so don't worry about it. >> EMER: So in that particular case, we can see where an individual comes to the attention of the professional community when their intellectual capacity is a certain level below -- below the average of society. And if we have a chance, it would be interesting to talk about how other things work together. For instance, in some research I've done, having a disability -- a mobility impairment can be made much worse, for instance, by the lack of money and so forth. And that's information that's found in the literature. And I'm sure people can see in practice as well. So as we're thinking about how to interact in an ethical way with our customers or our clients, we need to figure out what are the differences in power between us, as practitioners, and them as consumers or clients? And it's with that power differential in mind that we need to recognize the overall concept of doing good and not doing evil to those who are trusting us to provide them with care. There are some naturally occurring bases. You know, typically those of us who are working will have a specific knowledge base about issues. In some cases, we might have the key to the locked unit which allows us to decide whether or not we will leave the unit where the individual we're working with may, based on his or her diagnosis and societal response, may not be able to decide whether they can leave. And it's critical to recognize how the practitioner has power that the consumer does not. And those of us who are in that power position need to be wise and fair, just, and so forth as we attempt to ensure our client's overall well-being. I'm seeing Dr. Geist moving a little bit. >> CHRISANN: I'm enjoying it. I hope everybody else is, too. >> EMER: Another critical issue that I think we as practitioners face is our gate keeping function. In many cases, we have the power to either allow an individual to receive treatment or to deny them treatment. We have the power to help them have access to benefits and the overall characteristics of doing good, allowing autonomy, fidelity, not doing evil and being fair are critical to our roles as gate keepers. I'd like to move just for a minute into systems theory as well. Those of you who are social workers will realize that that's the base of what we do, and I think even psychologists need to figure that out as well. The roles that we play within a system, for instance, within an institutional setting or a community-based agency are defined by the system. There are expectations, formal and informal, that each person in the system is supposed to carry out. Certain actions that we're supposed to do as a practitioner as well as a client. We follow rules. There are times when we become en meshed. En meshed means that we've gone over board for lack of a better word in terms of our relationships with either other professionals or with our clientele where the boundaries that we have become blurred. The permeability of our boundaries contributes to whether we become, if you will, overinvolved or underinvolved. And it's critical to remember, too, that every system has at its heart the desire, the need, the want to remain at an even keel, at homeostasis. Systems do not like change. So, for instance, if I've been in power in an agency for ten years or fifteen years, and a new staff person comes threatening my power, I will try and help them either consciously or unconsciously to follow the rules and to leave myself as a leader. In addition, when a new consumer or client comes in, the group, the staff, the whole system will try and help that person to become what a client or consumer is supposed to be as defined by that system. So once again, we need to look and make sure that as that -- as that occurs, that it happens in a way that's right and that's ethical. It's crucial in systems for us to promote a fundamental fairness of both formal roles and informal roles, rules and expectations. And once again, we as the more powerful parts of the system need to be aware of our ability to make binding decisions that will affect the roles of our clientele. Moving down just a bit to the next slide is the concept of Parens Patriae which is a legal term that means the government serves as our parent or our protector. And once again, we as professionals have that role and it's granted to us by society. We can look back to our constitution as a legal base for that where we look after the health, safety and welfare of both -- the government looks after our health, safety and welfare. And then the government and society gives us the sanction to look after the health, safety and welfare of those within our professional care. The government also reaches out and society reaches out to maintain a standard below which it does not want professionals to go when they're dealing with clientele. And so that's where state regulation comes in, and also then within professional groups is professional self-monitoring. And, for instance, in many cases what we'll do is provide continuing education to help with the state monitoring process. There are prerequisites for education for people to enter into roles with clientele and so forth. Okay, Dr. Geist are you -- >> CHRISANN: Go all the way to your quote. >> EMER: Okay, great. So at any rate, society steps in when the ethical -- the more general concepts of ethics of good -- whatever good practice is are less clear, when there are points where specific information needs to be delivered to personnel in order to ensure that they provide the services that society wants. And once again, as Chris was mentioning earlier, it's when the dilemmas occur that regulation is called for, when there are clashes between ethical principles, what is good for the whole versus what is just for the few or different interpretations, what I think is good for the whole may be very different from what Chris thinks is good for the whole. And so if we cannot work that out ourselves so that the practice we provide for our clients is maximized, then it's up to our professional organization or the state to step in and in its role as parent to give us more guidance. Exchange theory is another crucial factor to consider in ethical practice. No matter what, there is always a trade of some type of good between people. It's either intangible or tangible, positive or negative, and ultimately there is a balance that will be made. Once again, homeostasis is a driving force of systems. Those of us who are direct care providers, for example, receive money, salary or wage to provide whatever type of care, education or hands on care and so forth. In my experience, those who are most successful at hands-on care have been those who also receive intangible goods, a feeling of providing service to humanity or providing -- of contributing to the overall good of society through their type -- through their simple or complex care. Let's see, regulatory ethical practices govern exchange. None of us works in a vacuum. There are also general rules and as I mentioned when there are clashes is when the formal specific rules come out. In the class I've been teaching lately, for example, we've talked about the Tuskegee experiment which many of you may be familiar with when sharecroppers were allowed in the deep south to go without treatment for their Syphilis for many years. The ethical problems about that were so strong that indeed in about four years after that experiment began, it was ended and federal laws were enacted to make sure that such unethical practices where people were not being treated with whatever the latest medical advances were could not happen again. So there is regulation. Now, a wonderful thing that I hope you all do is work with research. That's what I teach about, and I think what you'll find as you do research and whether it's formalized research where you add up statistics and take field notes and so forth or whether it's just your own examination of your practice and you making generalizations about how you should treat individuals with whom you work each day, I'm hoping that you will realize that research is a wonderful thing, finding new knowledge and that you will work diligently to find that new knowledge in a way that is beneficial to you and to your consumers that does not detract from their well-being, that provides them with autonomy and the ability to choose and that is fair and equitable. And I thank you. >> CHRISANN: So in terms of ethics and its relationship to you as a practitioner, we need to talk about issues related to codes of ethics a little earlier, but those codes of ethics hopefully relate to ethical practice and they involve professionalism, professional client relationships. Sometimes issues related to your own or your client's own spirituality and or religiosity. Law, team issues. Many of you work in interdisciplinary teams. Issues related to the financing of services provided and across all of these ethical issues. The reason why you perceive yourself as a professional, I hope, is because there has been a public declaration from the Latin professio that says that you are providing a benefit to society, and that your group of people who provide that benefit regulate themselves to some degree. So this goes across professions, law, medicine, nursing, teaching, social work, rehabilitation, counseling, disability service provision, et cetera. Wherever we have a public declaration of profession of an organization of people that give a societal benefit and regulate themselves, we need to have something to guide that profession. And the people that provide whatever that is professionally are competent in a particular skill. They do something that nobody else can do, for example, as a psychologist, I can do intelligence testing and that is something that's exclusive to the practice of psychology. Even psychiatrists who do a lot of things that medical doctors do can't legitimately provide intelligence testing and so I can clearly say that this is one of the things that's specific to my profession, but I must deal with that testing that I do in an ethical fashion. So I've competence in a skill. I have defined duties towards society because of that, and I can exhibit some control over the practice. That's often why we have state licensure or national certification to determine which people really are part of that profession and also to control and regulate that profession. But obviously professions also have some other things connected to them. As we mentioned earlier, codes of ethics, but also a fiduciary relationship which is a relationship as Emer mentioned in his earlier discussion of the more powerful person, those of you that have the profession, to the less powerful, the person who is receiving your services. And benefit for the client, the recipient of services, is the goal of the profession. In general, even though we may have a legal responsibility in some cases, especially to children, to act as a parent, what we want to avoid is not acting in a legal parental way, but avoiding paternalism where the profession decides and I think in rehabilitation the classic issue of around this has been the evil medical model where the medical professional decides the choices and the outcomes for the rehabilitation patient rather than the patient making decisions themselves. In this case, almost a complete discrediting or avoiding autonomy which is one of our ethical principles. Professions are different from businesses than -- although it's okay to make money the your profession. We're not saying you can't make money at it, you have these other responsibilities like accountability and honor and integrity and respect. So you're not just selling cars, you're actually selling your credentials, those things that make you a professional and part of that is your ethical practice. In our professional client relationships, we want to avoid projections of our own issues on to the client. We must keep -- certain of us have a legal as well as ethical responsibility to keep confidential those things that are brought to us. But sometimes there can be a conflict, for example, if you are a lawyer and you have to maintain confidentiality of certain issues, there have been sometimes conflicts with the greater good and of course we won't go into all the ethical issues around lawyers, but we hope that they are following ethical principles as they go. As I mentioned before, sometimes issues around religiosity create problems in terms of how important is your version of right and wrong from another person's version of right and wrong and those can be really critical and do you ever impose your belief system on another person or more importantly how do you allow them in your relationship to be respected for their own belief system and at what point do you have to withdraw from the relationship because of conflicts around belief systems? And then of course the other issue that we're all concerned about is when our profession treads on legal kinds of issues, you know, when we can get ourselves in trouble because we may be behaving ethically, but we're also crossing over some legal boundaries. So there is a little diagram if you look at Page 5 of the handout that shows kind of the fact that there is a boundary between legal and illegal and then there is another boundary between ethical and legal. So sometimes we can be behaving in an ethical fashion and we might still be doing something which could be perceived as illegal and how do we bridge that gap? Or vice verse a we may be acting in a way that's legal, but turns out to be an unethical kind of decision. So those are things that you all have to decide within the ethical codes that your particular profession is. Another case comes if you're acting as a sole practitioner, of course, do you balance your own approach to legal versus ethical and if you're working for an agency, there is also a risk management piece of this. So at what point do we do the good for the client versus doing the beneficence choice for the organization that we work for and sometimes there clearly are conflicts between what's the best thing for the client that we're serving versus what's the best thing for our agency or our boss or our company and so it's those things that are really difficult to decide and can only really be brought to the fore in case studies. So I'm going to kind of go through some of this quickly so we can get to one of the most critical case studies in an ethical study and get to that because I think until you start pointing to certain cases, it doesn't have a lot of real meaning for you. So just briefly the kinds of issues that you're going to deal with on a case-by-case basis often revolve around access to care, who gets what services. Informed consent, what do we tell clients and what don't we tell clients and when do we have to tell the clients' secrets to somebody else. Confidentiality, who of us are bound by confidentiality principles and who aren't? Truth telling -- in terms of our personal interaction with clients. Privileged communications, end of life issues which is a good case we're going to talk about in a minute and a half and then our responsibilities as professionals. I mentioned before we work on interdisciplinary teams and there can be issues when one of the people on the team has a particular responsibility towards confidentiality, for example, or privileged communication and somebody else on the team doesn't and how does the team then deal with those issues? So, again, a reminder of the principles because we seed we want you to learn them over and over again. Beneficence, doing good versus nonmaleficence, not doing evil; doing good, not harming anybody. Autonomy, respect for the rights of the person; fidelity, being truthful and faithful; justice, treating cases in a fair manner. We've given you some more details on each of those which I think, you know, as long as you remember the principles, you can take some time and do some independent study on how to balance doing good with not doing evil, how to balance autonomy, the supporting the individual with fidelity to other external agencies, how to balance autonomy with fairness. These are -- these are issues where often we see ethical dilemmas coming up. How do we balance those principles, behave ethically and yet we have two goods, two things that are very, very good and we have to pick one of them over the other and decide which of them we're going to support. And so the case analysis approach is the best way to do this. To get down to the details of the case and try to identify the ethical principles that are at work, trying to come up with as much data as you need and then trying to make a decision and often these things can happen on the spot. In the medical profession, you know, somebody who at the scene of an accident and has to decide between the autonomous needs and wishes of the person who has been injured versus the greater good to society. The fairness of delivery of services to one group versus another, et cetera. Sometimes these decisions are one that is we don't have a year to sit around and mull over and go back to the lecture that we had on the 9th of May and look over the over heads. We have to make these decisions right a way. And so let's get to the Dax case which is one of the most famous, there have been movies done about this. There have been numerous papers written about the case of Dax. And this is on Page 9 of your handout. This is a case that relates to medical ethics. In 1973, Dax, who was 25 at the time was severely burned in a propane gas explosion. He actually was a real estate sales person. He and his father were looking over some real estate that they were going to be engaged in selling and they were out in the field. It was not property that didn't have any buildings on it, and there was a gas line under the property. There was a gas line explosion and Dax was severely burned and actually his father was killed in that same accident. So Dax was rushed to the Burn Treatment Unit of Parkland Hospital in Dallas. This is a real case. He was found to have severe burns over 65 percent of his body. His face and hands suffered third-degree burns and actually had severe amputations to the hands. And his eyes were severely damaged and he ended up being blind. Full burn therapy was instituted after an initial period during which his survival was in doubt. He was stabilized and underwent amputation of several fingers and the removal of his right eye. During much of his 232 day hospitalization in Dallas and his weeks at the Texas Institute of Rehabilitation and Research in Houston, and his six-month stay at the University of Texas Medical Branch in Galveston, he insisted that treatment be discontinued and that he be allowed to die. This is a person who was in excruciating pain for this period of time. The burn treatment at the time that this was happening in the 1970's was not as sophisticated as it is now. For this extended period of time, the better part of a year, this man was in excruciating pain and also felt that he was -- and knew that he was permanently damaged, permanently disabled and amputation and loss of vision, et cetera, and really wanted the pain to stop and wanted to die. He wanted medical treatment to stop. Despite this demand, wound care was continued, skin grafts were continued and he was discharged as totally blind with minimal use of his hands, badly scarred. He was a handsome man before the accident and now very severely disfigured and dependent on others in many, many personal functions. So the issue comes up in terms of the ethical treatment of this case. Autonomy -- the person wanted to die. He didn't want to go through the pain of his rehabilitation. And he didn't want to be disabled for the rest of his life. What good was accomplished? Well, Dax's life was saved. I mean the medical community said, no, we started treatment. We're going to continue it. What harm was caused? Death would have avoided intensely painful treatments and it was his wish. He didn't want to be a person with a disability for the rest of his life. Under the -- so there is a conflict here between the do no harm and do good. So we have an ethical dilemma in that part of the case. Autonomy versus fidelity, were the patient's wishes respected? He wanted to die. He wanted to discontinue treatment. He wanted to die, but what he asked for was no more treatment which would have meant he would have died. Did he have the capacity to decide? Did he have the mental ability to decide or was he depressed and unable to make that decision? After emergency treatment, when the burn treatment -- the painful burn treatments were started, his chance for survival was only 20 percent. Now, we know he did survive, but in a certain sense was he making a good decision knowing that he had an 80 percent chance of dying anyway, he'd have to go through this terrible pain. He would be disabled and he might die anyway. After six months of treatment, however, his survival was at 100 percent. He was still choosing to have treatment discontinued. His refusal of wound care, had it been respected, would have been 100 percent certainty of death. So here we have medical and rehabilitation professionals in a dilemma. Do we go welt autonomy of the client, especially at the early days when we knew that his chances of dying were really, really high or do we override that and say, too bad, Dax, we're going to keep you alive and you're going to go through this excruciating pain and you're going to live with your disability whether you want to or not. A case analysis, initially the doctors assumed that the trauma of the burns limited his ability to make decisions. Later, a psychiatrist affirmed he did have a capacity to decide. He was fully aware of what was going on and he was not so depressed that he couldn't make a decision. Would his decision constitute assisted suicide? Could Dax reasonably evaluate his life after rehabilitation? Did he really know that there are many people with disabilities as severe as he would have, who still have a high quality life? How could he know that? And how could anybody communicate that to someone? Unless you really worked with someone with severe disabilities, you may not realize that having most of your fingers gone is terrible, that being disfigured may not be an issue for you once you deal with it. That blindness is something you can work with and have a quality of life any way. Prior to life, Dax was an athlete, an outdoorsman and ex-Vietnam fighter pilot, and as I said, he was in real estate when this happened. During treatment, his life was excruciatingly painful and he was depressed but was still found he was capable of making decisions. After the accident, he would be disfigured, blind, without most of his fingers and would experience mobility limitations. There are a couple of other things that I think are important and even though we have the analysis of the case, what are the other things that play into an ethical dilemma? Well, one of the things that is critical here is that Dax's mother urged aggressive treatment for religious reasons. His mom went to the medical doctors and said, even though he wants to die, if you let him die, I'm going to sue you. She had lost her husband, don't forget. So she was not wanting to lose both her husband and her son in the same accident. There were legal implications in honoring his refusal and they weren't as clearly defined as they are now. There were insurance issues. The cost of the care were available. What if Dax was a person who was indigent? Someone who wasn't well insured and if the cost of this year long treatment was something that were going to be imposed on the public, what about did responsibility to the public for providing care that the client doesn't even want or the patient doesn't even want in this case? And one of the other interesting things -- and I think those of you that have worked in hospitals realize is that the patient's attitude really affects the quality of care. So his wanting to die affected the quality of his treatment. So there were issues within the staff -- what am I doing this for when the person doesn't even want to live. So when you think about a case like this, a real case, you can see where those ethical principles have beneficence, nonmaleficence, autonomy, fidelity and justice all come into play from the financial piece of it to the moral decision piece of it, to the religious piece of it, you have to get down to cases like this and I'm sure everybody who is listening now can figure out and think about a case that you've had. Each of you have had a case -- maybe not as dramatic as the Dax case, but every one of you have worked with a client where these ethical principles were really at the heart of the decisions that you had to make. And this case is pretty dramatic. It's pretty classic and it brings all of those things into play, but I think it helps you to think about the other cases that you deal with on a day-to-day basis. So we're not simply talking about abstract principles. We're talking about those five ethical principles relating to real people, life and death decisions, decisions about quality of life, decisions about jobs and employment, decisions about vulnerable persons being supported by majority decisions that may be made, et cetera. The confluence of those things together are what create the ethical dilemmas that you're going to have to resolve and resolve in your professional life. So, again, when you think about the goals of rehabilitation and how do we come out with a decision in these cases? First of all, get all the facts together. Evaluate the facts. Project outcomes for the various options. What if we honor his request to stop treatment, what if we don't honor it, what are the consequences? Develop an understanding of the case and finally whatever resolution you come to in your decision-making, be able to substantiate it. Because these are ethical dilemmas, there is no right or wrong. If you support one principle, you're going to deny another principle. So you need to know why you personally chose to go in one direction as opposed to another. And you have to have data and facts to back that up. And if you do that, then you will never be violating your Code of Ethics. You won't get brought in for ethical charges from your profession, et cetera, if you explain why you chose one direction vs another. But you have to have data and you have to have facts to be able to do that. Let's skip down to another interesting one, one that -- are we out of time completely? We've got five minutes. >> LAUREL: Go ahead, please. >> CHRISANN: Let's get down to the case on Page 11. We're not going to give you any answers to this. We'll send you off thinking about it. This is one about informed consent. Mr. and Mrs. J. have a 4-year-old child with cystic fibrosis. They seek information from a genetic counselor about the risk of having another child. They have one child who is severely disabled. They want to know if they have another child, what are the chances that that second child is going to have cystic fibrosis and be disabled? They go in for testing and the tests show that Mr. J. doesn't carry the gene and that's because he's not the biological father of the child. What should this couple be told? You are the counselor, the genetic counselor in this case, but you could be the rehab counselor or the nurse or someone working in a service provision situation. You've got the data in front of you. What do you tell them? The question that they're asking is what are our chances of having another child with cystic fibrosis? The correct answer is zero, but there is a whole lot nor to this case than just telling them no chance. And I think can you see the implications here have a lot to do with informed consent, understanding the principles involved in those five ethical principles, et cetera. Should we take a couple of minutes for questions? >> LAUREL: That would be great. We could start with what's the right answer? >> CHRISANN: On that last one? >> LAUREL: Any of them. And these are very provocative. Dawn, do we have some questions? >> DAWN: I'm sorry, right now we don't have any questions that have come in. >> LAUREL: Chrisann and Emer, I do -- I had a couple come in. One is as a supervisor how can you know whether or not ethical practices are being used by the people -- the counselors, et cetera, whom you supervise? >> CHRISANN: Okay. Well, first of all, I think you have to have discussions with them about the principles. You can't assume anything and as I said just because somebody has taken a test and signed off that they're going to follow the Code of Ethics very their profession doesn't even guarantee that they remember what those ethical principles are. So I think that every time you do -- you process cases and you team, that you need to remind people about the ethical principles and you need to ask them, are you having problems with this? Is this something that we can discuss and if they don't want to talk about a particular case, they can give you a hypothetical case. Something similar to the issue they're having but close enough you can actually discuss it in your weekly meetings or how ever often your team meets. >> EMER: And I think, too, to clarify the difference between what I think is good and what, let's say, the agency or institution thinks is good will help give guidance to a staff member who might be in a quandary. You know, will that give you 100 percent certainty that they won't do something that the agency perceives is unethical? No, but I think that will give guidance to you in that kind of situation. >> CHRISANN: Any other questions? >> LAUREL: I've been asked in the past about are there readings that you would suggest that provide just good foundational information on the subject? >> CHRISANN: Yeah, we have on the last page there we have some references. >> LAUREL: Excellent. >> CHRISANN: And I think that's a start. You know, a lot of this is -- a lot of the literature on this is in medical ethics, but you can see that you can obviously take those principles and apply them to any case connected to disability and they're going to be relevant. There is a lot of current stuff you can read, too. The cases that Emer and I used the last time we taught a long course on this, we did ten hours instead of one hour, we spent several hours on the on the Terry Schiavo case. And you can take these principles and work them a million different ways based on the issues of that case and I think that's another way also to work with staff would be to look at what's in the paper and what's on T. V. currently. Bring some of those situations that are -- people are trying to deal with ethically into the case conferencing that you do and see how they apply to the real cases that are in front of you. >> EMER: And I think another thing in these situations, there is not a right answer. You know, unless your agency is defining what absolutely must happen, sometimes you'll have to agree to disagree. >> CHRISANN: Of course you take the chances you might get fired, but you have to decide on how much your profession means to you versus the requests that are being made of you from supervisors and that's a critical piece. You have to know where your own boundaries are and the best way to do that is to be informed of the ethical principles themselves. >> LAUREL: That's excellent advice and I'm sure it happens not infrequently. Dawn, have any other questions come in? >> DAWN: No, not at this time. >> LAUREL: Chris and Emer, I can go into our closing. Were there any final remarks that you care? >> CHRISANN: If anybody wants to E-mail eath of us afterwards, I think it's on your website. >> EMER: It might be interesting to do a case discussion if people have an interest. >> CHRISANN: Good follow up. If people are interested in round 2 of this, we could do something where we just spend two or three minutes on the principles and do all cases. I think the cases become the real interesting piece of it. maybe people will let you know if they're interested in more. >> LAUREL: Sure will, and if they'd like to recommend a scenario -- >> CHRISANN: If they send us their real cases, that would be the most fun. That would be great. With names changed, of course. >> LAUREL: We'll pursue that and get back with you. This has just been revealing and I'm sure that the ten hour one must leave people exhausted. >> CHRISANN: We did it over two days. We didn't do it in one day. >> LAUREL: It's such critical information and speaking of TIRR, I'm a staff member of the TIRR which was the institute you were talking about. >> CHRISANN: That's right. Okay. >> LAUREL: And we're familiar of course with medical social workers as well as working in the realm of independent living of people who provide peer support, whether they are mentors and many of those are psychologists or medical social workers or layperson eel who are doing just the most important job and this is just so critical. So we'd like to follow up if possible. So thank you both very much. I'd like to just take a minute to close and primarily to point out that these -- this presentation is part of the Rehabilitation Research Institute for Underrepresented Populations. We have related presentations, webcasts done in the past. They are listed there on the web page for this one. I think we left off one that was done in August of '04, which was counseling without bias, and again looking at the issues of -- ethical issues, but focusing to a great extent on people who are just different from the counselor. Very good presentation. The archives, you'll notice of the ILRU webcast cover a diversity of subjects from issues pertaining to ADA and law and implementation of those provisions to CIL and statewide IL council operations to things and matters related to health, wellness and well-being, implementation of Olmstead related programs. There is an array of topics there that -- we feel that are informative and important in today's world and welcome you to take advantage of those. Also on your page there is an evaluation link and we would welcome input from you on that evaluation in terms of the content, et cetera. We would also here at ILRU particularly welcome notes on how we can make it more navigable, the whole website experience. How can we improve the ease of use? What are other ways that we can improve the process? We certainly welcome that. And just real quickly in closing, Chris -- I want to thank Chris and Emer for a terrific presentation. Thank you both very much. And Chris, if we had more time, we would want to ask you how a person who spent most of her career in Illinois is taking to living in the deep south? We'll hold that. >> CHRISANN: I'll give you the quick answer. I love it. It's great. >> LAUREL: That's just great. Memphis, Tennessee. We also want to express thanks to Madon and Alo Dutta who are with this program. We want to acknowledge the funding that has supported this webcast and other ones. It comes from Title II of the Rehab Act. That's the section on research and training, and of the six goals of the Title II of the Rehab Act, the fourth one is to ensure widespread distribution in usable format of practical, scientific and technical information and it specifies that it's not just for researchers, but to people with disabilities, family members, service practitioners who aren't researchers and the general public. And so the Rehab Act has built in protections for those of us who aren't researchers, but can stand to benefit from the research right now and apply it to the issues with which we're dealing. And Emer was right in emphasizing research -- the Rehab Act also has as a purpose in Title II to increase opportunities for researchers who are members of traditionally under served populations and that includes folks from minority groups and people with disabilities, and more and more people with disabilities are moving into research and looking for answers for today's problems and it's a good idea as Emer points out. So thanks to our wonderful Rehab Act in many ways just extraordinary and we don't know enough about it, we who are in the field, it has so many provisions that aid us. It's administered through, of course, the National Institute on Disability and Rehabilitation Research, and finally our webcast team, Rob Dickehuth, who is with the Center of Collaborative and Interactive Technologies at Baylor College of Medicine, we're kind of cousins, and Marie Bryant who is our realtime captioner. These two people are just -- just do terrific work, as do our staff at ILRU. So on behalf of Marj Gordon and Sharon Finney, Maria del Bosque, Rose Shepherd and Dawn Heinsohn, good afternoon and we look forward to hearing from you at our next webcast.