Doing the right thing is often simple and clear. We find the medical problem and we do all we can to heal, to comfort, and make life better for our young patients and their families. But sometimes doing the right thing isn’t easy, simple or clear.
In addition to medical questions, families and caregivers sometimes have moral or ethical issues. These come up when it is not clear what is "right" – the question is what should be done, not what can be done. Most of the time, even hard questions are answered through open and honest talking between children, parents and their health care professionals. When we don't all agree, it can be useful to ask for help.
Jay Malone, MD, MS, PhD is here to let you know that in order to provide such help with some of these problems, the St. Louis Children's Hospital Medical Ethics Subcommittee can help.
Selected Podcast
A Closer Look at the Importance of Ethics in Health Care
Featured Speaker:
Jay Malone, MD, MS, PhD
Jay Malone, MD, MS, PhD Instructor, Pediatrics Division of Critical Care Medicine. Transcription:
A Closer Look at the Importance of Ethics in Health Care
Melanie Cole (Host): For pediatric clinicians, and really all clinicians, doing the right thing is often simple and clear, doing all you can as healthcare providers to make life better for young patients and their families, which is not easy, but sometimes doing the right thing isn’t as simple and clear as you thought it might be. My guest today is Dr. Jay Malone. He’s a Washington University Pediatric Critical Care physician at St. Louis Children’s Hospital. Dr. Malone, you were recently appointed to Medical Director of Ethics at St. Louis Children’s Hospital and also served as co-chair of the ethics subcommittee of the Children’s Medical Executive Committee. Speak a little bit about the importance of upholding quality ethical standards at Children’s.
Dr. Jay Malone (Guest): Sure, thanks Melanie for the opportunity to talk about this topic, ethic services at St. Louis Children’s Hospital. I think part of the reason that ethics services are so important for us as pediatric providers is really related to this incredible explosion that we’re seeing of medical breakthroughs and technology that are emerging probably more rapidly now than any other time in history, and for a hospital like St. Louis Children’s Hospital that’s always staying on the cutting edge, that means that the care that we can and do provide to children is getting increasingly more complex, and our first priority as a Children’s Hospital is of course to take great care of kids. Upholding quality ethical standards improves that mission in a number of ways. It increases patient trust and it lets our patients and our families know that they are a respected and important member of our care team, but a second impact of this increasing complexity of medical care, is that as a hospital we’re continuing to try to recruit really talented people to work here and we want those people to keep working here, and we know that strong ethics programs help us to do just that. Employees want to be proud of the organization where they work and ethics programs are a big part of organizational reputation. We also know that based on very recent data that nationwide, about half of nurses have considered leaving their current job in the past two years because of moral distress in the workplace, difficulty with some complex decision that they have to make around medical care and ethics and ethical environments can reduce the frequency and intensity of moral distress, which helps us as a hospital to retain a highly qualified staff.
Host: Wow, that was a great explanation of the general healthcare environment. What drew you to be so involved in medical ethics?
Dr. Malone: I think many professional ethicists can trace their interest in medical ethics to probably one particular encounter earlier in their career that was ethically challenging and that’s – certainly that’s true for me. Early in my residency training I cared for a child in the Pediatric ICU whose medical decision making was relatively straightforward but the moral and ethical dimensions of his care were incredibly challenging for me and for the whole team, and in the aftermath of that case, I really watched people continue to struggle with it mentally and emotionally for a long period of time, and I think that lead me both to ethics and critical care medicine, which is my clinical specialty. So when I came to Children’s about six years ago I started getting involved in ethics almost immediately, and I’ve been really fortunate I think to be here during a time of incredible growth in our ethics programming and services.
Host: So as a critical care medicine physician, I mean I can hear your passion, and being in ethics at the same time what a wonderful combination, tell us about the medical ethics subcommittee. Who makes up this group and what kind of practioners get involved in this? And what does the subcommittee do?
Dr. Malone: Yeah, that’s a great question. The medical subcommittee is an interdisciplinary group and it’s a group of really dedicated medical professionals and lay people from the St. Louis community. Currently, and I hope I don’t leave anyone out here, but the committee is made up of physicians, nurses, chaplains, psychologists, therapists, and several parents of children who have been treated at Children’s Hospital in the past. We also work hard to have a committee representation from all different units and areas of the hospital. I think that our committee really benefits from having a wide variety of opinions represented, and we’re proud as a committee that we’ve always maintained a great diversity of sort of professional and lay person representation on our committee. You asked what the committee does, and would say that most well run ethics committees are involved probably to varying degrees in three major areas, which are policy development, education, and clinical consultation. Our committee at St. Louis Children’s Hospital is very interested in prioritizing education and consultation, which are the committee roles which sort of most directly influence our colleagues. So in terms of education, we’re always happy to come to individual units or groups within the hospital to discuss ethics topics. It’s become clear to us that as ethicists, we have really just as much to learn from our professional colleagues as we have to teach, so often it’s the case that our education sessions are really conversations about ethics topics and staff seem to really appreciate having an opportunity to address some of these really heavy issues that they’re facing in their work.
Host: Dr. Malone, based on what you’re saying that the subcommittee does and tackles, can you provide an example of the types of issues that the committee might be faced with?
Dr. Malone: Sure, we deal with a really wide array of ethical issues, but very broadly, issues can be clinical disagreements about what the best care plan is and these are usually disagreements between for instance a family and a care team, often around end of life care. We’ve addressed questions about whether to disclose unexpected results from genetic testing. We’ve answered complex questions about adolescent decision making. I can honestly say that no two cases have ever been exactly the same, and we often have medical teams in our hospital system dealing with these staggeringly complex ethical issues, so for me it’s really been a privilege to be able to help teams work through these really complex types of ethical decision making.
Host: How or when would a patient or a family request a consult? Who can initiate that request?
Dr. Malone: Most of our requests for consultation actually come from the medical team. Certainly our committee will accept a request from anyone who contacts us, whether it’s family members or any members of the medical team, and people can contact us by calling either the page operator or Children’s direct who can direct them to the on call ethicist. The on call ethicist would then be able to gather some initial information and get the process started.
Host: Tell us a little bit about that process, Dr. Malone, how is the issue looked at, discussed, resolved? How is the solution presented to the families? How does that work?
Dr. Malone: Yeah that’s a great question. I think first it’s important to mention how unique each of these cases really are. As I’ve mentioned before, I’ve never seen two cases that were exactly the same, so the process itself can look really very different depending on the particular question, and depending on how urgently a response is needed from the ethics team. So the process generally starts out with just some basic information gathering to clarify what the ethical question is and to understand the best way to help resolve it. Sometimes we get really straightforward to the point questions that can be answered right there on the spot, but more often our process involves talking to staff, talking to families, talking to all the people that are involved in a particular case to understand the facts of the case and the nature of the ethical conflict and that usually takes place as a series of meetings between ethics consultants and the different parties that are involved in the case. When we have met as a committee, and reach some results from the consultation process, we try to provide the results of the consultation verbally to the person that requested the consultation so that they know that we’ve taken action on it. We also, when it’s appropriate, provide a written note in their medical record, and we often follow up our consultation with teaching sessions for the particular unit that was involved if the particular ethics consultation raised some question that the staff want more education about.
Host: Fascinating process. At what point would the patient’s family, pediatrician be involved? Are they involved really in the process?
Dr. Malone: Another great question. I think involving the pediatrician would again depend on the details of the particular case, but often we find that ethical disagreements involve the needs to understand the values and the moral commitments of a family, and when we have situations where families for whatever reason have difficult articulating their own values, we have this really valuable resource in our community pediatricians who often have the benefit of a longitudinal view and a longitudinal experience with these families, so if I really need to understand how a family has approached medical issues over time, their pediatrician might be the best positioned person to help me understand that information.
Host: That’s a great point. I’m somebody who relies on my pediatrician for so many things. So what a good point that you just made, Dr. Malone. As we wrap up, what else would a referring physician want to know about how Children’s manages and resolves ethical issues? What would you like the take home message to be from this episode?
Dr. Malone: Well I think that ethics is often viewed as being very proscriptive. People have the idea that when the ethics committee is invited into a situation, that they are likely to tell medical professionals what they can’t do, but in the majority of cases, it’s really the opposite. We’re actually able, most of the time, to go into a clinical situation and affirm that our colleagues are doing the right thing in a really difficult situation, and that opens an opportunity for us to help provide education and support for people involved in these really difficult cases. So asking for input from an ethicist I think should be viewed as just one more tool that our providers can use to provide excellent patient care, and also to take really good care of their team.
Host: That’s great information for other providers to hear. It’s really special what you’re doing and it helps the patients and families so very much. Thank you Dr. Malone for coming on and explaining your subcommittee to us, and for explaining what ethics in healthcare really is all about. To consult with a specialist or to learn more about services offered at St. Louis Children’s Hospital, please call Children’s Direct Physician Access Line, at 1-800-678-HELP, that’s 1-800-678-4357. You’re listening to Radio Rounds with St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital, you can go to stlouischildrens.org, that’s stlouischildrens.org. This is Melanie Cole, thanks for tuning in.
A Closer Look at the Importance of Ethics in Health Care
Melanie Cole (Host): For pediatric clinicians, and really all clinicians, doing the right thing is often simple and clear, doing all you can as healthcare providers to make life better for young patients and their families, which is not easy, but sometimes doing the right thing isn’t as simple and clear as you thought it might be. My guest today is Dr. Jay Malone. He’s a Washington University Pediatric Critical Care physician at St. Louis Children’s Hospital. Dr. Malone, you were recently appointed to Medical Director of Ethics at St. Louis Children’s Hospital and also served as co-chair of the ethics subcommittee of the Children’s Medical Executive Committee. Speak a little bit about the importance of upholding quality ethical standards at Children’s.
Dr. Jay Malone (Guest): Sure, thanks Melanie for the opportunity to talk about this topic, ethic services at St. Louis Children’s Hospital. I think part of the reason that ethics services are so important for us as pediatric providers is really related to this incredible explosion that we’re seeing of medical breakthroughs and technology that are emerging probably more rapidly now than any other time in history, and for a hospital like St. Louis Children’s Hospital that’s always staying on the cutting edge, that means that the care that we can and do provide to children is getting increasingly more complex, and our first priority as a Children’s Hospital is of course to take great care of kids. Upholding quality ethical standards improves that mission in a number of ways. It increases patient trust and it lets our patients and our families know that they are a respected and important member of our care team, but a second impact of this increasing complexity of medical care, is that as a hospital we’re continuing to try to recruit really talented people to work here and we want those people to keep working here, and we know that strong ethics programs help us to do just that. Employees want to be proud of the organization where they work and ethics programs are a big part of organizational reputation. We also know that based on very recent data that nationwide, about half of nurses have considered leaving their current job in the past two years because of moral distress in the workplace, difficulty with some complex decision that they have to make around medical care and ethics and ethical environments can reduce the frequency and intensity of moral distress, which helps us as a hospital to retain a highly qualified staff.
Host: Wow, that was a great explanation of the general healthcare environment. What drew you to be so involved in medical ethics?
Dr. Malone: I think many professional ethicists can trace their interest in medical ethics to probably one particular encounter earlier in their career that was ethically challenging and that’s – certainly that’s true for me. Early in my residency training I cared for a child in the Pediatric ICU whose medical decision making was relatively straightforward but the moral and ethical dimensions of his care were incredibly challenging for me and for the whole team, and in the aftermath of that case, I really watched people continue to struggle with it mentally and emotionally for a long period of time, and I think that lead me both to ethics and critical care medicine, which is my clinical specialty. So when I came to Children’s about six years ago I started getting involved in ethics almost immediately, and I’ve been really fortunate I think to be here during a time of incredible growth in our ethics programming and services.
Host: So as a critical care medicine physician, I mean I can hear your passion, and being in ethics at the same time what a wonderful combination, tell us about the medical ethics subcommittee. Who makes up this group and what kind of practioners get involved in this? And what does the subcommittee do?
Dr. Malone: Yeah, that’s a great question. The medical subcommittee is an interdisciplinary group and it’s a group of really dedicated medical professionals and lay people from the St. Louis community. Currently, and I hope I don’t leave anyone out here, but the committee is made up of physicians, nurses, chaplains, psychologists, therapists, and several parents of children who have been treated at Children’s Hospital in the past. We also work hard to have a committee representation from all different units and areas of the hospital. I think that our committee really benefits from having a wide variety of opinions represented, and we’re proud as a committee that we’ve always maintained a great diversity of sort of professional and lay person representation on our committee. You asked what the committee does, and would say that most well run ethics committees are involved probably to varying degrees in three major areas, which are policy development, education, and clinical consultation. Our committee at St. Louis Children’s Hospital is very interested in prioritizing education and consultation, which are the committee roles which sort of most directly influence our colleagues. So in terms of education, we’re always happy to come to individual units or groups within the hospital to discuss ethics topics. It’s become clear to us that as ethicists, we have really just as much to learn from our professional colleagues as we have to teach, so often it’s the case that our education sessions are really conversations about ethics topics and staff seem to really appreciate having an opportunity to address some of these really heavy issues that they’re facing in their work.
Host: Dr. Malone, based on what you’re saying that the subcommittee does and tackles, can you provide an example of the types of issues that the committee might be faced with?
Dr. Malone: Sure, we deal with a really wide array of ethical issues, but very broadly, issues can be clinical disagreements about what the best care plan is and these are usually disagreements between for instance a family and a care team, often around end of life care. We’ve addressed questions about whether to disclose unexpected results from genetic testing. We’ve answered complex questions about adolescent decision making. I can honestly say that no two cases have ever been exactly the same, and we often have medical teams in our hospital system dealing with these staggeringly complex ethical issues, so for me it’s really been a privilege to be able to help teams work through these really complex types of ethical decision making.
Host: How or when would a patient or a family request a consult? Who can initiate that request?
Dr. Malone: Most of our requests for consultation actually come from the medical team. Certainly our committee will accept a request from anyone who contacts us, whether it’s family members or any members of the medical team, and people can contact us by calling either the page operator or Children’s direct who can direct them to the on call ethicist. The on call ethicist would then be able to gather some initial information and get the process started.
Host: Tell us a little bit about that process, Dr. Malone, how is the issue looked at, discussed, resolved? How is the solution presented to the families? How does that work?
Dr. Malone: Yeah that’s a great question. I think first it’s important to mention how unique each of these cases really are. As I’ve mentioned before, I’ve never seen two cases that were exactly the same, so the process itself can look really very different depending on the particular question, and depending on how urgently a response is needed from the ethics team. So the process generally starts out with just some basic information gathering to clarify what the ethical question is and to understand the best way to help resolve it. Sometimes we get really straightforward to the point questions that can be answered right there on the spot, but more often our process involves talking to staff, talking to families, talking to all the people that are involved in a particular case to understand the facts of the case and the nature of the ethical conflict and that usually takes place as a series of meetings between ethics consultants and the different parties that are involved in the case. When we have met as a committee, and reach some results from the consultation process, we try to provide the results of the consultation verbally to the person that requested the consultation so that they know that we’ve taken action on it. We also, when it’s appropriate, provide a written note in their medical record, and we often follow up our consultation with teaching sessions for the particular unit that was involved if the particular ethics consultation raised some question that the staff want more education about.
Host: Fascinating process. At what point would the patient’s family, pediatrician be involved? Are they involved really in the process?
Dr. Malone: Another great question. I think involving the pediatrician would again depend on the details of the particular case, but often we find that ethical disagreements involve the needs to understand the values and the moral commitments of a family, and when we have situations where families for whatever reason have difficult articulating their own values, we have this really valuable resource in our community pediatricians who often have the benefit of a longitudinal view and a longitudinal experience with these families, so if I really need to understand how a family has approached medical issues over time, their pediatrician might be the best positioned person to help me understand that information.
Host: That’s a great point. I’m somebody who relies on my pediatrician for so many things. So what a good point that you just made, Dr. Malone. As we wrap up, what else would a referring physician want to know about how Children’s manages and resolves ethical issues? What would you like the take home message to be from this episode?
Dr. Malone: Well I think that ethics is often viewed as being very proscriptive. People have the idea that when the ethics committee is invited into a situation, that they are likely to tell medical professionals what they can’t do, but in the majority of cases, it’s really the opposite. We’re actually able, most of the time, to go into a clinical situation and affirm that our colleagues are doing the right thing in a really difficult situation, and that opens an opportunity for us to help provide education and support for people involved in these really difficult cases. So asking for input from an ethicist I think should be viewed as just one more tool that our providers can use to provide excellent patient care, and also to take really good care of their team.
Host: That’s great information for other providers to hear. It’s really special what you’re doing and it helps the patients and families so very much. Thank you Dr. Malone for coming on and explaining your subcommittee to us, and for explaining what ethics in healthcare really is all about. To consult with a specialist or to learn more about services offered at St. Louis Children’s Hospital, please call Children’s Direct Physician Access Line, at 1-800-678-HELP, that’s 1-800-678-4357. You’re listening to Radio Rounds with St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital, you can go to stlouischildrens.org, that’s stlouischildrens.org. This is Melanie Cole, thanks for tuning in.