Dorothy L. Gordon, RN, Ph.D., FAAN
Associate Professor and Director of Health Systems Nursing
The University of Texas at Austin, Nursing School

I am Dorothy Gordon, and I'm on the faculty at The University of Texas School of Nursing here in Austin, about three blocks down the street. My role there is as the head of a division - now what do we call it? - a program in the School of Nursing which is related to nursing systems, which includes health systems nursing administration and some policy related to that. And it is primarily in our graduate program, and it entails, obviously, some objective and some work in preparation of people for leadership positions. And we have increasingly added material in there related to concerns of people who are going to be managers or administrators, because most of us can relate to the immediate - if any of you were in healthcare direct, you know it all comes down to this one-on-one where we're dealing with a person or a community, if you're a community person, where you feel it. But also there are the people in the organizations, and primarily in administrative positions or manager positions, who also need to exercise ethical, moral leadership, and do have tools to do that and ways of helping to provide the environment that supports an ethical climate in the facility.

I will briefly give you an overview of the healthcare system here in the United States, not knowing whether all the people here are from healthcare or out of healthcare, but just to introduce us into a background that has brought to us enormous change which adds complexity to the decision-making that we all have to do. And particularly in our areas of discussion today, it will be focused on the ethical decisions. Part of the reason for doing the background is to set the scenario and the scope of all the places in healthcare where there are opportunities and/or failures or missed opportunities to influence an ethical climate for our practice, our policy- making and our education for leaders.

The external influences shape the systems of health services delivery, and in any country the basic characters of the healthcare system are influenced by the external social and physical environments. These forces - and I'm going to draw liberally from Shee & Sing, who have just published a book on healthcare delivery systems and they have summarized these changes very meaningfully and briefly. The forces, no matter what country you are in, include the social values and cultures - and these are influences on healthcare delivery; the characteristics of the population - the demographics, what the healthcare needs are, social morbidity problems such as AIDS, injury, murder, et cetera; physical environment - we think of toxic waste and sanitation but there are also ethological issues in the physical environment; technological development - more and more, biotechnology and information systems development are rapidly bringing us into an area where we need to think quickly and learn how to use them, and that certainly is something internationally, it's bringing us all closer together, or has the opportunity to do so. Another big area that affects our healthcare systems are the economic conditions. I won't mention the fact that there's an article in the Austin Statesman newspaper this morning that is addressing the impact of the tax cuts which were introduced by Former Governor Bush on what's happened here, and the questions are, "Is this really what we want at the national level now?" So the idea of changing an influence, economics, whether it was from the Clinton administration, et cetera, but we're already now, with the big tax cut, proposed, looking at coming back to Texas and saying, "What has been the impact of the tax cuts that were supported by the current Governor?" The political climate, I think all of you would agree, has some effect on healthcare, and I don't think we need to elaborate that but it certainly includes interest groups and laws and regulations.

In the United States, our healthcare system differs from countries in the following characteristics, about 10 of them. Number one is that we have no central agency which governs our system. We don't even have a statement of what our health policy is. For example, in many countries there is a national health program. We do have access to healthcare in this country but it is selectively based on your insurance, as opposed to other countries, many of whom - not all - have universal access to available care primarily because they have a one-payer or a national health system. In this country, the delivery of our healthcare is under imperfect market conditions. Essentially our delivery of healthcare is mostly private, and it's only partially governed by free market forces.

Fourth, our third party insurers act as the intermediaries between the finance and delivery systems. For example, our government assumes the insurance function - for example, Medicare, et cetera - however, payments to providers and others, they use insurance mediaries between making actual payments with the mediaries. The multiple payers make up our system, and that is cumbersome. Basically we have a lot of people or a lot of means and methods in which you can get your health care coverage, but then we get into all of the details of what that means and what is covered, what you're eligible for, et cetera.

The balance of power among the various players in our healthcare system prevents any single entity from the dominance of the system. Now, some of us feel the impact of managed care and the idea that the shift into a businesslike atmosphere is dominant today. However, you have to also turn around and look at the dominance of the Federal government and still the dominance of private insurers, et cetera.

Legal risks in our country influence our practice, professional practice and behavior. For example, one we would know readily are physicians are often practicing defensive medicine for fear of malpractice. And those are legal risks that force them to do that. How many of you, if you have gone for a medical appointment and you want to have an antibiotic, and you're told that the antibiotic is not really the best thing for you to handle flu other than to help prevent any secondary infections, and you are kind of miffed because you went to the doctor's and you didn't get anything? And very often the physicians are pushed upon or feel pushed, and feel intimidated, even the fact that they're sitting there trying to tell you that. But those are some of the things that influence the behavior.

The development of our new technology creates an automatic demand for its use, meaning, when we have a new technology, immediately we want it to be everywhere and available to us. That circles over into demand. It surfaces into costs, all these other things. We have plans - I can remember, it's been 21 years - I don't go back much further than that - but 20 years when it was a big thing in Washington, D.C. - and I was working with the PSRO, the forerunners of PROs - and in all health planning, and things were going on. And a couple of the neurologists in town who had a group practice at that time purchased and had the first CAT scan set up, and set it within their offices, not within the healthcare facility, and obviously then became available for other physicians to refer their patients to. Well, that was wonderful. But once that came out just in that area, you all know CAT scan is secondary to us now as saying you need to take your temperature for certain diagnostic things. So when something new comes up, our culture, our sense, makes us demand that we have it everywhere. When we want it, we want it to use. Do we still wait for MRIs to go in and have an appointment at 1:00 a.m.? When MRIs were coming in the area, before there were more of them - and I think it may still entail - but there were 24- hour appointment for people who had to have the MRIs by medical appointment. I mean, I worked at Johns Hopkins University Hospital for a while and I know that there were instances where patients were being sent for he MRIs at midnight, primarily because they had one at that time, but now that's grown. So these kinds of things are what influences us and gives us later on some of the issues and problems here.

We have new service settings that have evolved along the continuum of care. Most of us used to be sick at home or we went to a physician's office or we went to the hospital. Those were primarily where healthcare took place, or medical care took place. Nowadays we have home health care. We have subacute clinical areas. How many divisions within a hospital do we have? We have critical care. We have step-down units or progressive units and so forth. We have home health care and various stages in nursing home care. And we also have healthcare more out in the community than before. So it has evolved along a continuum.

Quality is no longer accepted as an elusive goal in the delivery of healthcare. I didn't say we have universally attained it but I said it is not an elusive goal. And the concept of continuous quality improvement, which some of you may know as quality assurance in businesses and so forth - that concept is almost universally applied and known throughout the healthcare system. It's demanded by some of the accrediting agencies, et cetera.

In the U.S. in recent years, the healthcare systems have undergone some fundamental changes in addition to these characteristics. The concept of health has moved from illness to wellness. How many of you now can name a wellness program or you're aware of a wellness program where you may work or you see advertised? It's moving also primarily from acute care to primary care. Independent institutions used to be the hallmark; now we have integrated systems, among others. There are very few free-standing community hospitals anymore that aren't integrated with some sort of a system to stay afloat, for an example.

These above forces, moving in an exceedingly rapid rate, challenge all healthcare organizations and institutions, their governing bodies, the administrators, healthcare providers, including doctors, nurses, pharmacists, aides in hospitals, community health personnel, vendors of products and services - so anybody who works or tangentially touches in the healthcare system is affected by these changes. The pace of change is rapid, and what it has done is impacted the caregivers, the administrators, the managers, to make complex decisions in a rapid set of time. And in the context of what we're going to do today, we're going to talk about what are those issues and how they affect ethical, moral concerns of patients, providers. It's no secret that there is great need in healthcare for moral leadership.

Our speakers today will address three areas within healthcare that describe major issues faced by those who teach, who practice, who administer, or who consume healthcare services in our community. We will move along now. I have asked each of the speakers to provide their own bibliographies since only one remembered to give me one! I could tell you that we had a technical failure but that's not really what happened. This is a human failure but I won't point out who it is!

We'll start the introductions by calling attention to Dr. Joy Penticuff.

Joy H. Penticuff, RN, Ph.D., FAAN
Lee Hage and Joseph D. Jamail Professor
The University of Texas at Austin, Nursing School

I am Joy Penticuff and I'm on the faculty at the School of Nursing here at UT-Austin, as well. I am a person who has been in neonatal and perinatal nursing for my career, and got very interested in bioethics really about 20 years ago. It's very hard to be a neonatal intensive care nurse and not worry about the use of the technology with babies that are born at the borderline of viability, and all the technology that we have available to us.

What I would like to present in a very short period of time is sort of an introduction to the idea of organizational ethics. Now, how many of you have some familiarity with what we would call organizational ethics? Okay, quite a few of you. How many of y'all are in leadership positions in healthcare now? Okay. And are y'all in like - excuse me, but could I ask, what is the role that you take?

Audience Member: I'm with [inaudible] for the Department of Health.

Joy Penticuff: In Austin?

Audience Member: In Austin.

Joy Penticuff: Okay, very good. And you are?

Audience Member: Faculty, previous administrative [inaudible].

Joy Penticuff: Very good. The sort of thing that seems to be emerging now, as you all know, in bioethics there's been quite a focus on the interactions between individual healthcare providers - physicians, nurses, social workers, RTs, and so forth - and the patient and the patient's family. And that has really been the focus of just about everything that you read in bioethics in terms of cases, the literature. If you get the case books, you will see that that is really the focus. But in the last probably, I would say, about three or four years, there is an increasing recognition that in order to really have an ethical practice climate, we have to take a different approach, so that we really have to look at the systems within which healthcare is delivered and begin to take a bioethics approach or an ethics approach in trying to identify whether these systems that are in place, that are the managerial systems that Dottie talked about, really do fulfill the ethical goals of the institution.

I'll give you an example. With Dr. Sharpe, I am on his Pediatric Ethics Committee. We had a situation where a nurse was working for the resource pool for a hospital system. And this nurse had decided to leave her staff position and go into this resource pool, which is the float pool. And the reason she wanted to do that was that she wanted to get her master's degree and she needed to be more in control of her work schedule - which the float pool nurses have a lot of control over their work schedule - and she wanted more money, because the float nurses per hour make a huge amount more than a staff nurse. Now, what those float nurses give up is typically healthcare benefits. And so what happened was that, even as a young woman, she was diagnosed with a very terrible type of cancer. I can't remember what it was, but at any rate she needed desperately to have medical treatment and she did not have medical care coverage. And the hospital system found out about her situation and decided to give her this care free. Now, many people would think, "Oh, what a nice system," right?

Well, I had a very different reaction, and really, I think, so did the entire set of people who knew about the case. To me, it was a very, very important example of organizational ethics. And that is, how does an organization justify having a worker who does not have health insurance? And people within the system responded to that criticism and said, "It was her choice. She took that risk. She got the extra money, so what is her complaint? We gave her free care. She ought to be grateful." But to me, it really did exemplify issues within systems that have to do with the core values of systems. A healthcare system knows that healthcare is expensive. It knows that people need to be covered. It knows that those services don't just drop out of the sky. You have people who have to be paid. You have equipment that has to be paid. You have all the expenses. And so, for the system itself to allow within itself a system where an employee - and I believe even though she was working float pool, she still was working almost full-time - was not going to have as part of the employment those healthcare benefits. Now, you may say to me, "Well, Joy, it's pie in the sky. People do make their choices," and so forth. But it was a very interesting thing to me that then the system saw itself as being good and generous by giving her that healthcare. So that is, to me, just an example.

Now, let me very quickly - because I know y'all are going to be very interested in what Dr. Volker and Dr. Sharpe are going to present - but let me just say, I'm going to quote now from Robert Wyman Potter. "Organizational ethics is the discernment of values for guiding managerial decisions that affect patient care. 'Discernment' implies intentional reflective deliberation by the group, and this is the group of manager and principals. 'Of values' refers to guiding assumptions, preferences, principles or goals by which the organization operates. 'Guiding managerial decisions' points to a certain level of decision-making and specifically to the decisional pressure points that are critical to an organization's function. 'That affect patient care' refers to actions that have consequences for patients. Clinical ethics is the discernment of values guiding clinical decisions that affect patient care. Organizational ethics is distinguished by locating the action at the managerial level of decision-making." So this is, again, just sort of a very quick overview, but I hope it will help all of us to keep in mind that individual practitioners within systems cannot very much control the ethics of their practice unless they have a great deal of very conscious, deliberative support by the administrators of that system. And this was taken from the Journal of Clinical Ethics, vol. 10, no. 3.

Deborah L. Volker, RN, Ph.D., AOCN
Assistant Professor
The University of Texas at Austin, Nursing School

Good afternoon. I'm Debbie Volker, not Deborah. That's just what my mom calls me. And I'm a newcomer to the faculty here at the UT School of Nursing. I'm a recent graduate of their doctoral program, but I have worn a number of other hats in my lifetime that help to inform where I am in terms of my values and ethics and the importance I place on ethics within a curriculum to develop our nursing leaders.

Prior to joining the UT School of Nursing faculty this year, I worked down in Houston at the UT M.D. Anderson Cancer Center. I'm a cancer nurse by clinical background. And down at M.D. Anderson, where I worked for more years than I'm going to tell anyone because you'll know how old I am, I wore two hats. I was Director of the Nursing Education program, and so I was charged with providing the educational services for all the nurses there in order to prepare them to be competent practitioners, but I also was a member of our Clinical Ethics team, and in the last couple of years was also what they called an Adjunct Ethicist, which meant that when our primary Ethicist was out of town - and she was out of town quite a bit; she's very popular on the lecture circuit and such - there were two physicians and two nurses, myself one of them, who wore the Ethicist On Call hat. So I had a variety of very interesting experiences having that pager go off at 2:00 in the morning on Saturday and helping our staff, our patients, our family members, deal with the clinical ethical issues that come to the forefront. So that's the baggage I bring to the discussion today, my oncology background and my clinical ethics background. My part of the presentation is really to speak to or to highlight the need for ethical leadership from the clinical practice point of view. And I could certainly sit here and talk for more hours than I think any of you would care for me to talk, so I decided, let me just try to address and answer four questions to heighten your curiosity and your knowledge about what are the clinical issues that are impacting the bedside caregivers - with an apology that it does have an oncology or a cancer rubric around it because that's where I have my most recent experience. But the four questions that I would like to speak to are: What is the nature of the clinical ethical issues that occur - I was going to say daily, but I think sometimes hourly - in our healthcare organization? What do the nurses and physicians and social workers and so forth confront every day? And then zero in on another question, which is: Why is care for the dying or those who are facing end-of-life such an important moral imperative today, of all the clinical issues that we'll talk about? The third question is: Why do nurses play such a pivotal role in providing ethical leadership in our healthcare organizations? And then finally, I'd be remiss without asking and answering the question: What are we doing to help prepare our nurses to be clinical leaders in these healthcare environments that are so fraught with ethical dilemmas and problem on these daily and hourly bases? So that's where we're going, and I'll see if I can do this in a succinct fashion.

What is the nature of the clinical ethics issues that we confront in daily practice? What are the nurses and physicians looking at out there? Well, certainly, Dottie highlighted a variety of societal issues that are coming together in terms of the fact that we're an aging society and we are in love with technology. And those two have really been on a collision course for a long time and are coming to a head now. About three to four decades ago when people faced end of life, they usually went through that process pretty quickly. Unless you were reasonably healthy and enjoyed an aging or an older age, most people would end up with having a very quick dying trajectory; would suffer infection, trauma or a late stage of a disease such as cancer, stroke, other kinds of heart disease, and die pretty quickly, and die in the home. We didn't have the technology, as you all know. You read the papers every day; you know this song and dance about the impact of technology. But we're on a collision course when we look at we're aging, we are a society of chronic diseases now, if you will, and we have all kinds of technology. Our mandate, then, is to look at, how do we deliver and justify allocation of these resources in a way that's just, that's kind, that doesn't intentionally harm people, and that has some sense of fairness about it? How do these all then collide and come together in daily practice? Let me give you a few examples that just come from my own work, and certainly there are many others out there. Let's just talk through a couple of kinds of problems or issues that the healthcare providers are facing. The first one is, should a terminally ill patient always be told the truth about his prognosis? Should people be told that they're dying? In this day and age in our society, most people would jump up and say, "Well, of course." We're a society of truth-tellers, of informed consent, of laying it out for people so that they can make the best decision possible, and there are many people who want that. But we also are certainly a multi-cultural society and not all of the people that we work with necessarily want the truth in a way in which some of us want to tell it.

So the second question that comes out of there is, who should prevail when those cultural norms collide? Who should prevail? Who should prevail when we have a child who wants a different course of action than a parent? One of our most difficult clinical consults in the last - gosh, it's just been in the last two years - involved that very question. It had the cultural overlay and it also was a parent/child issue. We had a young Asian woman who was a patient, who came to M.D. Anderson. She had a lethal form of leukemia, and she came specifically to us to have a bone marrow transplant to save her life. She had had other forms of treatment that had been helpful for a period of time and then failed, and she came to us to save her life. In her particular instance, the only person who could be a donor for her was her 8-year-old daughter. This woman, the patient, was a recent immigrant to the United States. She was a Korean woman who had given up her daughter when her daughter was born to another family in another state. And so the daughter, although she had met her mother and knew she had a biologic mother elsewhere, was raised by a set of parents elsewhere. But when her mother was diagnosed and it was found that she needed to have this transplantation, permission was received from the adoptive parents to go ahead and test this biologic daughter to see if she could be a donor.

The daughter was a match. The daughter was brought to Houston in order to serve as a donor for her mom. When she got to Houston and when the whole team sat down with her in a sensitive manner to talk with this child about what this meant and what it would mean to donate her bone marrow, the child refused. The child refused. She was 8 years old, and when she heard what it would take to donate her bone marrow, she said no. An ethics consult was called by the physicians who were involved in this case because their question to us as the Ethics Committee was, "This is the only way we can save this mom's life. Can we override what this child is saying and go ahead and harvest her bone marrow?" And ultimately after - I'll fast-forward it. After much, much deliberation, the decision was that yes, we should uphold the child's right to refuse to be a donor for her mom. And so the child did not donate; went back home with the only parents that she really knew, to another state. We treated her mom with other forms of therapy that were available but were not as optimal, and the mom died a few months later. Just one example of the juxtaposition - and of course, the cultural overlay had to do with our concern with, as this child grows up and gets in closer touch with what this whole issue meant, and she was perhaps in a position to save her mom's life, what would that mean for her and her family dynamics and such? Just another question about the clinical problems that confront our caregivers daily.

Another question: Is it morally acceptable to assist a dying patient to end his life? It's not legal in Texas. It's legal in Oregon. Any of you from Oregon? No. So the legal question is out there, but is it ever morally acceptable? We had a patient who had a Do Not Resuscitate order, who did indeed choose to end his life; took a lethal dose of a medication at home and rolled into our Emergency Room. And the question was, what do we do? Do we resuscitate him, because we suspect he's attempted suicide, and is that something that we can help him with in terms of depression and end of life, or do we respect his right to control his life? And actually, we didn't resuscitate him, and he did die a few days later. That was one of those Saturday night, 2:00 a.m. kinds of calls. The E.R. physician on call calls with those kinds of questions.

Is it ever appropriate to withdraw or withhold food or fluids? We've had a number of court cases that have established that, but our clinical caregivers often still suffer from the moral implications of withholding those very, very basic biologic aids to life. We're not talking of taking people off a ventilator; we're talking about food and water.

Under what circumstances can healthcare professionals claim a right to conscientious objection? Our accrediting bodies in hospitals now say that our staff have a right to refuse to carry out an assignment which they have an ethical or religious objection to. How might that play out? How does that play out at the bedside? We had a patient who was an end stage of lung cancer, and this was a gentleman who wanted everything to be done. And in fact, he was so concerned - he knew that he had a bad prognosis and bad disease. His cancer had spread throughout his body. He was admitted to the hospital because he was having seizures. The cancer had invaded his brain, and he was having a variety of other kinds of medical problems. But he wanted everything possible to be done. And he asked for his chart, and he wrote in the chart, "In the event I should need this, be sure to resuscitate me. Be sure to put me on a ventilator. Do everything it takes to keep me alive. I do not want to speak to an Ethics Committee. Thank you." That was an interesting twist!

So what happened with this gentleman over time was, he became progressively sicker and sicker, and one day he stopped breathing. The staff resuscitated him and off he went to the ICU and was being maintained on every type of life support you could imagine. And the days went by, and the weeks went by. He was in a position to no longer be conscious but his wife, who was his surrogate decision-maker - and he had two sons who were very heavily involved as well - basically said, "My husband / my dad said do everything." Every time the staff would try to approach them about the fact that their dad was dying and talking about humane and dignified death and what they might want, it was like, "Dad said keep the machines going." Over time, this became more and more morally objectionable to the nurses and to the physicians who were caring for this man.

The first question, though, that everyone had grappled with was, "This man said no Ethics consult," so the first question was, could the Committee even meet when this gentleman had said uh-uh? Well, it was decided that we'd need to meet if for no other reason than to help our nurses and physicians with this issue. The bottom line was, the decision was made that yes, nurses and physicians can consciously object and should not be placed in a position of providing care that they don't feel is ethically and morally appropriate for an individual. And it ended up that the physician administrators and the nurse administrators of our ICU were the ones who delivered care. And it was quite a scheduling tap dance because we had a Head Nurse and a few Assistant Head Nurses, and we had a few of our attending medical staff who assumed sole responsibility because they would not subject the people they worked with to that situation. And the man did ultimately stop - he was breathing on a machine but his heart stopped, and he was coded and didn't make it. But that was the way in which they dealt with this ethical dilemma that came before the Committee.

Many, many other questions. How do you allocate scarce resources, organ transplants, for example? What are our moral obligations to patients that we cure of their disease but we leave with debilitating side-effects? And actually this creeps on into the organizational ethics world. At the time that I practiced at Anderson, we had a Clinical Ethics Committee but we didn't have an Organizational Ethics Committee, so the organizational stuff came to us as clinicians. We were asked - for example, we had a gentleman who we did a bone marrow transplant on, and as part of his treatment in order to get ready for this transplant in which he would receive high doses of drugs and radiation that would totally wipe out his defense against infection so we could give him another person's marrow - in order for him to survive that process, we had to do something that was devastating to him and his quality of life. We had to remove all of his teeth. Now, you might think, what on Earth does that have to do with a bone marrow transplant? Well, your teeth, your gums, are the primary source of infection in your body, and he had such poor dentition that they way in which we could help to keep him from succumbing to a life- threatening infection was to remove all his teeth prior to the transplant. That was done. He consented to it; wasn't real happy but he said, "Do what you have to do." Consented to it. He was transplanted successfully, and then he said, "So when am I getting my new teeth?" We took them out. He wanted replacement teeth back. Well, I would have said that, too. It was not a strange question. But we, as an organization, didn't have a denture bank that we could just give people dentures after we pulled them out. And his healthcare coverage was such that he wasn't covered for dentures. He was covered for his transplant, for the hundreds of thousands of dollars for that transplant, but not for the dentures. And he was quite insistent. He was not going to go home without those dentures. Well, the staff called an ethics consult. What do we do? We said, "Well, gee, we've never had this happen." We all met and said, "Is there a case that we can look back to? Do we have a fund somewhere that some generous donor has put aside, that we can pull out money for the teeth?" We actually ended up providing for those dentures through a few other very benevolent parties, but it brought the organizational ethics issue to a head: What obligation do we have as an organization to make people whole after we've treated them? But it came to the bedside nurse and physician who were working with this man every day, who wanted to know when he could start eating cheeseburgers again. Otherwise, he would have been sent home with liquid Ensure. Do you all know what that is? Have you ever tasted it? It's really awful. So just another question. And we could actually go on and on about the obligations that organizations may or may not have in terms of providing services for people who come to us. So let me go forward then. I've got a few other questions I wanted to speak to or answer, but that just is to set the tone for what our folks deal with every day.

The second question was: Why is it such a concern in our society today - why is it such a concern that we're worried about care at end of life? Again, you turn on the TV every day, you read the paper. Many of you may have seen Bill Moyers' special on PBS last fall, "On Our Own Terms," about the state of dying in America. Why has that all come to a head? Well, I talked about our aging society and the clash of technology and so forth. But just a few other observations that I think are rather sobering. Seventy-eight percent of people - I brought my statistics with me - 78 percent of people in the U.S. live past their 65th birthday, and more than three-quarters of those people will contend with cancer, stroke, heart disease, obstructive lung disease, and dementia. It's kind of a bleak picture. If we took all of us and looked at 78 percent, that's what we have after we get past age 65.

We have an issue in front of us that says most of us today - most of us will be lucky enough to live past age 65. That's the good news. That's great stuff. But most of us will die a very slow death due to a chronic, debilitating disease. And so we now have the luxury of being confronted with choices and issues associated with that debilitating decline. We have a healthcare system - we talked about systems - that's wonderfully equipped to deal with acute care, to transplant hearts, to get people into ICUs. We do all that stuff really, really well. People come from all over the world for that. But that's not a system that's designed to deal with chronic illness and comfort care at end of life. Consequently, there's been a public outcry. We've finally brought that to a head. And there's much that's being done to start to improve the quality of care. There's much yet that we still need to do, and our organizations, our healthcare organizations, are under tremendous pressure now - a good thing - to address these issues.

What types of pressures do they have? Well, just one example. The Joint Commission for Accreditation of Healthcare Organizations, JCAHO - any of you heard of this body in Chicago, the JCAHO police? Well, this is an organization that accredits, evaluates and accredits, over 19,000 hospitals in the United States. Basically, if you don't have JCAHO accreditation, you don't get third-party reimbursement and you shut your doors, so it's a very powerful organization. Up until this year, however, JCAHO and all the standards that they require hospitals to meet - everything from having a clean kitchen to having fireproof infrastructure to having a sufficient number of nurses - now, finally, in the year 2001, JCAHO is now requiring and mandating that hospitals address pain in patients.

Now, it's kind of shameful. I mean, I'm sitting here really ashamed to even have to say that or point that out. Up until this year, there wasn't the accreditation big stick to even force the issue. But starting this year, when hospitals are inspected or accredited, they'll be asking questions such as or looking at standards such as: Do all of your patients know they have a right to pain management? Are all of your patients educated about pain management? Do you have systems in place to monitor how well you deliver care to people in pain? Let's see your Quality Improvement reports that show us you're monitoring this. So there's a big stick out there now that's forcing the issue, that's forcing organizations to deal with this at a larger level. So it's not the responsibility of that one nurse, that one physician who's trying to make his or her way through a maze of an infrastructure that doesn't always support these things.

So the third question is: Why are we concerned about nurses being prepared as ethical leaders? A couple of somewhat obvious answers. One is that the registered nursing group in the United States is the single largest group of healthcare providers that we have, so RNs are positioned to make a significant impact at the bedside with ethical decision-making perhaps more so than any other group of healthcare providers. There are more of us than any other group. And the second issue that I think is certainly worth noting is that the American public expects it of registered nurses. The Gallup Pole that they do every year, do it in the fall, that asks the American public, who do they think are the most ethical and honest professionals in the United States - and if you get called, you're given this whole list of different groups of - they're not all professions but occupational groups. And for the last two years, registered nurses were at the top, that they were considered to be the most honest and ethical. Well, I think that gives us a responsibility to make sure that they are. I think some of my colleagues will be glad to know that physicians were right up there in the top five. Veterinarians, other healthcare providers, pharmacists - fortunately, college professors were number 7, so I felt pretty good about that, too! I bet you can guess who was at the bottom?

Audience Members: Lawyers?

Dorothy Volker: Lawyers, yes. Who else?

Audience Member: Car dealers.

Dorothy Volker: Car dealers. Advertising agency people. Those folks still have a ways to go. But RNs were up there.

So, the fourth question. I'll wrap up with just a brief answer to the fourth question, which was: What are we doing in the world of nursing education, and specifically here at the UT School of Nursing, to prepare nurses to be ethical leaders? We have one strategy that I'm particularly proud of and that was a reason why I came to teach here at UT, and that is, for our undergraduate nursing program, every single one of our undergrad pre-nursing students, people we've not even allowed in or admitted into the professional sequence of courses - when they're within their sophomore year, these pre-nursing students are required to take a 3 credit hour semester course in Healthcare Ethics. That's almost unheard of. Joy, I don't know if you know of any other schools out there; I've not come across them yet?

Joy Penticuff: Uh-uh.

Dorothy Volker: But before they ever get to the clinical bedside, they've had a full semester of Healthcare Ethics, everything from the classic ethical theories and decision-making models, professional codes of practice, clinical issues and dilemmas that are confronted, allocation of healthcare scarce resources and what we're doing about that in terms of our healthcare system and other systems around the world. So that's the contribution we are making today to help ensure that when you wake up and you're looking at a nurse - hopefully not tomorrow! - but if that happens to you, hopefully that nurse has been well prepared to provide ethical leadership for you in your clinical care as well as within the organization. I'll wind down now and let George carry on.

George L. Sharpe, M.D.
Neonatologist
Clinical Assistant Professor
Chairman, Pediatrics Ethics Committee
Seton Healthcare Network
Brackenridge Hospital Neonatology Department, Austin, TX

Thank you. I'm the physician in the group. I've been in Austin since 1977. I was born in Canada, so I've experienced healthcare in Canada, Sweden and Germany as a consumer. I think I'm here as a dual purpose, both provider and consumer. Following my medical degree in Canada, I did a pediatric residency in my newborn specialization, neonatology, and then did two years in Stockholm, Sweden. That was very interesting to watch their model of healthcare. You sort of got worried when you went out with the duty physician on a weekend. Here's this psychiatrist seeing a patient with cardiac arrhythmia! And you do make certain tradeoffs in certain medical care models. As bad as ours is, I think I'll keep it for a while. I came back to the United States in 1975. I spent my first two years in Oklahoma at the Health & Sciences Center, and then came down to Austin in 1977 to become the neonatologist at Children's Hospital or Brackenridge. Shortly after coming to Austin, I was shanghaied by a School of Nursing to be on the adjunct faculty. My only chance for revenge was asking Dr. Penticuff to join the Ethics Committee!

Ethics Committees probably came into effect around 1984 in response to Reagan's Baby Doe Laws when an infant with [word] only 21 had been recommended to have heart surgery. The parents said "uh-uh" and people got perturbed about this and tried to go to court to force the parents, and the judge said, "Let the parents prevail." After another similar circumstance of this, the public ire arose and President Reagan hastily - very hastily - wrote the Baby Doe Laws into effect. And Baby Doe truth squads roamed the country looking for potential cases, led by anonymous telephone calls. I was even privileged to have a visit from those people even here at Brackenridge. It had a good outcome. After they left, they asked me to be a consultant! But the Baby Doe Laws also said, if a hospital had an Infant Care Review Committee, then the state Department of Human Services would stop at the Committee and ask them their findings before they would go and invade the hospital structure per se. And so the hospital rapidly said, "We need a committee. George, form a committee." I said, "Okay. Any guidelines for doing this in this state?" "No." "Any prerequisites?" "No, just form a committee."

And so we looked at the heads of various divisions - the head of pediatric section, head of nursing, one of the administrators, head of pharmacy, the social worker, the chaplain - and assembled a small group of people. And we invited Dr. Penticuff to join that mélange of people. And initially we met about every three months, very sporadically, and waited for clinical cases to be referred to us. And we did see cases: infants with life support systems who were expected to die within a short period of time; infants with critical birth defects who were not likely to respond to treatment. And as the Committee was conceptualized, we were not a decision-making committee. We wimped out. We played chicken. We would not say, "This patient should receive this treatment." We were a consensus committee. We felt that allowed the Committee members to autonomously express their opinion thus. So the parent and the physicians had to have a decision they wanted to air before us, and the Committee would vote to say, "Yes, we agree with your decision" or "We don't agree with your decision." We would not convince them of the merits one way or the other of following that decision. In our committee discussion, we would certainly look towards the ethical care of the parents, support systems, and whether or not the provision for aftercare after ethical consult, which we felt was fairly important.

Well, as a committee, who did we report to? The hospital told us to form but we couldn't report to them. We were a committee without a mandate, and so they attached us to the pediatric section. The pediatric section didn't appoint us but we had to report to them. And so as time went on, we gradually evolved into a slightly different structure. As I received consultations - look at the situation, first of all; see if there's an ethical question; a preliminary interview with the people involved would satisfy their curiosity. They may say, "We don't need the Committee," or there was an issue and we would put the whole committee together. Now, often the parents would request a decision from the Committee. They'd want to know if their reasoning would be blessed by other people. And many times we met for no other reason than that, to allow the parents time to ventilate, express why they felt this way, whether or not a larger body of people would feel that they as parents were doing the humane and the right thing in the best interests of their child. It also allowed the Committee to look at these people to see if there were any hidden agendas, whether or not some pressure was being put on them to make a decision. And we would generally satisfy our curiosity in those areas and meet as such.

Now, the Committee has continued to evolve and change its agenda to conditions within the hospital and the community itself. We realized immediately that the categorical assignment of committee people from department heads, you met with changing people, so the Committee membership was subject to change. And the most valuable commodity I have is longevity of committee members, people who will stay and hang with the Committee 5, 10, 15 years, because they're interested in this area of healthcare. But as department heads would change, a person would resign, go to a different hospital, I'd have to replace that. So over the years, I've come down to a situation where I only have 20 percent of the categorical function, and most of the people are community-based or based within the hospital and not likely to be affected by change in their job position or something else.

In seeking new members for the Committee, I often ask my committee members that we do need a replacement and I ask for suggestions for who they would like to volunteer as a name. If the name is volunteered to me, I will go and meet with that potential candidate both to discuss with them the purpose of the Committee and to obtain from them their commitment to hang with the Committee over many years. Committee members then and now have no formal training in ethics. Other than Dr. Penticuff and Dr. Mark [Churia] at St. Edward's University, who function as our ethicists, few of us have had any formal training. This has been the mode of medical and nursing training over the years; it really has. You have to realize that physicians, up to about five years ago, received very little formal training in ethics. And as you just remarked, it's unusual for nursing schools to require as a prerequisite any ethics-based training. And both nurses and physicians are blessed or cursed with the seed of paternalism. We're a very paternalistic profession. We know what is best for you. We know, despite your intentions, what is best for you, and we'll force that care on you no matter what. And it's a very hard crew to get them to recognize personal autonomy of patients, to shed your paternalistic attitude towards healthcare, and to treat the person as a person, to treat people with that respect which is the first rule of autonomy. And so gradually we hold in-services for the Committee. Well, throughout the hospital, you always come into situations which tell you that autonomy is very much in danger at all levels.

Now, for our committee, any person may approach us - a parent, physician, a nurse, any healthcare worker. Even a member of the public may approach our committee. And when the adult section of the hospital formed a committee about six or eight years later - yes, we were in function and six or eight years later, the adult hospital decided to do it - the medical staff go so threatened by this that they said the only person that can approach the Committee is another physician, of course. Nurses were forbidden to approach this committee. And so they held sort of a gatekeeper function. That has changed. It has changed, but just to tell you how resistant people are and threatened by the concept of an Ethics Committee.

In changing the mission, we have gone to three types of meetings. We have continuing education meetings, administrative meetings, and case conference meetings. The Committee must be kept active; it must be kept challenged by different types of meetings. The continuing education meetings are focused on identifying general principles of ethical care at the bedside within a hospital, discussing the various principles involved in the decision-making process, state regulatory directives, law, discussing sample cases, and anything to give the Committee some academic exercise. At times, the hospital admission Ethics Committee will also arrange for outside speakers. Now, some years ago we were taken over by Seton Healthcare System and our city hospital was leased to them for a period of 30 years. And so Seton came in with their own structure, and that has been a blessing for the Ethics Committee because the Catholic precepts in ethical healthcare delivery are much better than we could do underneath the city. More importantly, the Admission Ethics Committee is a network committee. It functions as an institutional ethics committee and under it are the Pediatric, Ault and Obstetrics Ethics Committees. I sit on the main committee as the Chair of the pediatrics one. And at times, the Hospital Admission Ethics Committee will bring in outside speakers and give a forum to all the ethics committees involved.

Now, the administrative meetings themselves try to identify themselves with healthcare ethical delivery problems. We have a health staff training program, and their curriculum should, but does not, contain a very solid ethical component. Again, these are new graduates. They come from schools or from other countries where ethics is not taught to them. Somehow they didn't acquire it genetically! So I find that most nurses in practice, notwithstanding new graduates who met the requirement, but most nurses in active practice have not had any ethical-based training, and most physicians have not, and those are the audience we have to try to reach. And over what the nursing school can do, we need to have the hospital administration do even more because they have to play catch-up with the in-service requirements. Unfortunately, the same is true for hospital administrators. Their curriculum has none of these elements. And because of that deficit, our committee has a hard time making itself heard. We pass endless recommendations upstairs and they fall on somebody's doorstep but the door is never opened. But I think the purpose of the Committee is to keep identify issues and to keep representing them, and gradually we have made some inroads.

Recognition of patient autonomy by a healthcare professional may be full, partial or completely absent. There's really little oversight by the national regulatory agencies. The national organization of RNs or national licensing bodies - there are none. RNs are licensed at the state level. However, physicians are trained under a national level. The net regulatory body has no minimal criteria for curriculum content. I am pleased that JCAHO really has taken an interest in this area. They, if anybody, can encourage a hospital to improve its actions and to get committees up that are functional, but more importantly, committees that will be listened to and hopefully some of their recommendations will be followed. Increasingly hospitals are establishing committees of nurses to guide medical care. Yes, not physicians, nurses! Nurses are deciding what our technical procedures, protocols and techniques used at the bedside, but they don't have an ethical base driver behind them. They do this in absence of other things. As an example, I'll give three. Infection control is my worst nightmare. Most of my infants will die of infection. At all times, that infection was not born to them; they acquired it within the neonatal unit. I have national recommendations from the nurses, infection control nurses. They state that beneath the fingernails lie numerous organisms. False fingernails in particular are a real source of infection. But yet throughout my unit I see artificial fingernails. I pleaded with administration, showed them the criteria, but you would think that the nurses themselves would sacrifice their vanity for the patient's comfort. They don't. The same thing with jewelry, gaudy rings; watches are worn at all times - not completely, but they would tend to unless you keep reminding them.

One day I had a concern from a nurse. A pediatric resident had gone to see a child who was having some respiratory distress. The child already had a Do Not Resuscitate order. The child was not on a ventilator, just had some upper airway congestion, was uncomfortable. And the physician got perturbed at being called and said to the nurse, "Well, don't you expect this kid to die anyhow?"

Another time a nurse reported that she'd been asked by an internal medicine resident to assist with getting some clinical photographs for their case conference. This particular patient had some very unusual mouth lesions that were very uncomfortable. A lot of pain was involved and the patient was not cooperating with the internal medicine resident. "Open your mouth, please. Let me take a good picture." And she tried to engage the nurse to forcibly hold the patient's mouth open so she could get pictures for her Grand Rounds presentation. So there are lots of areas where we come across ethical questions and we try to use our administrative meetings to find the most pressing needs within the institution, and hope to provide some resolution. Now, our continuing education conferences are open to the public. Anybody can attend. Our administrative meetings are open to the hospital staff. Our case conference meetings are meetings actually held to discuss a clinical question. And after receiving a consultation, I may have a smaller subcommittee review the question and see if they can resolve it outside the main committee. If not, then the main committee is called. Now, the Committee has also heard referrals from outside institutions. We have around Austin homes that care for disabled children and adults. We've heard two or three cases from them over the years, where they lack ethics committees themselves and they wanted to avail themselves of ours.

In the case of a committee, if the Committee decides to hear a case, we will not hear it in the absence of the parents. We will not be blindly and discuss with the physicians and nurses what the best outcome, and then have them go coerce the parents to their point of view. That is a disruption of autonomy and that's why we're a consensus committee and not a directive committee. In setting up a committee meetings, I or somebody else will try to identify the questions, see what principles are involved, and then call the principals together. We may involve consultants who have been treating the case. We try to involve the bedside nurse who may know the family, and we try to involve the family and any support people they want to bring. In contrast to the administrative meetings and the [see me] meetings where I will feed the audience, at a case conference we have come to a situation of no food allowed. There's just something disquieting about some very sensitive issues being heard and some committee member asking a question with her mouth full of chips. And so we've sort of banned food at our case conference meetings. It's pretty disruptive.

In the case conference situation, I try to get the Committee members as they come into the room to introduce themselves to the family. As the meeting begins, each of the Committee members and family, everybody will introduce themselves, who they are and why they're there. Then we hear the issues presented, and often I'll ask the kind of questions whether or not they're understanding the issues as we think they should be. So it's an educative function just to make sure. And then once the presentation is finished, I will excuse the family. The Committee meets in camera and discusses the issues. Some people ask, "Well, why exclude the family?" Again, I'm trying to get as much autonomy from my committee as possible, and get them to discuss with each other what they think the issues are, and I feel that they're a lot more freer in that. Some of my Committee does not agree with me on this. I'm still the Committee Chair, so that hasn't changed.

Once we have framed up the questions, we will do an open vote. I just ask each Committee member to say "I agree," "I disagree." And then the family is reconvened and I tell them exactly that "Ten of the Committee have agreed with you, four of the Committee could not agree with the proposal, and so our consensus is in the majority that we agree with the decision you and your physicians want to make on behalf of your child's best interests." At the same time, I will try to rephrase the case and I'll try to make suggestions about after ethical care. I'll try to make sure if there are any younger siblings in the family to anticipate a grief response from them that the parents may not have yet anticipated or thought about, because it's very hard for a child to express its grief to grieving parents and to be understood and heard. So I try to immunize the family about this precaution.

The Committee has, over the years, held together. We probably have 70 percent of our members that have been with the Committee for 10 years, and the rest of the people are the categorical ones who shift seats every so often. In setting up committees in your hospital, you've got to look at your resources, your institutional support, and let your committee grow and evolve to fit the conditions. As any system has to fill out its own space, the space that we fill out may not be identical to your needs as well. I have, over the years, taken two or three ethical conferences. I spent one week in Georgetown at an ethics seminar there for about five days, and just try to use continuing education for myself for the Committee. So that is roughly how we have created our own Ethics Committee here at the Children's Hospital.