EPISODE 4 [INTRODUCTION] [00:00:13] ANNOUNCER: Welcome to Season One All Things Ethics, a podcast series presented by SpeechTherapyPD.com. The SLP Learning Series explores various topics of speech-language pathology. Each season dives deeper into a topic with a different host, and guests who are leaders in the field. Some topics include stuttering, AAC, sports concussion, teletherapy, ethics, and more. Each episode has an accompanying audio course on SpeechTherapyPD.com and is available for 0.1 ASHA CEU. Now, come along with us as we look closer into the many topics of speech-language pathology. [EPISODE] [00:01:05] ANNOUNCER: Welcome, Dr. McFarland and Lynne. [00:01:08] EDM: In her article entitled Ethics in the Practice of Speech Language Pathology in Healthcare Setting, author Ann Kummer makes the point that, "The practice of medical speech-language pathology affects the health, wellbeing and quality of life of the individual served." Medical speech-language pathologists often work closely with physicians and other health professionals in making decisions about patient care, and by providing assessments, evaluations, and interventions to address the following cognitive, and communication disorders related to illness, or other health related issues. They often work with medically complex patients and clients. Medical speech-language pathologists must keep abreast of advances in treatment and technology. They must also incorporate ethical principles into their practice. Today, we have a very special guest for this podcast on medical ethics. Let me introduce you to Lynne C. Brady Wagner. She's a speech-language pathologist and the Chief Learning Officer for the Spaulding Rehabilitation Network. She's chair of the Ethics Advisory Committee, and Director of the Clinical Scholars Program at Spaulding Rehabilitation Hospital in Boston, Massachusetts. She is the Associate Director of the newly formed Spaulding Stroke Research and Recovery Institute. After receiving a master's degree in speech-language pathology at St. Louis University in St. Louis, Missouri. Lynne earned a graduate certificate in Health Care Ethics from Rush University Medical School, and was a disability ethics fellow at the Rehabilitation Institute of Chicago and the MacLean Center for Clinical Medical Ethics at the University of Chicago. Lynne is a former member of ASHA's Board of Ethics, was the Ethics Column Editor for the Special Interest Group for swallowing and swallowing disorders perspectives journal. She served as the group's Coordinating Committee Chair from 2014 to 2017. She's also an Adjunct Clinical Assistant Professor and teaches healthcare ethics at the Massachusetts General Hospital Institute for Health Professions. She's a Faculty Associate of the Harvard Medical School Center for Bioethics. Lynne has numerous publications in peer reviewed journals. She has lectured nationally on the topic of stroke rehabilitation, ethics, and disability, and serves on the editorial board for the journal, Topics in Stroke Rehabilitation. Lynne, let me welcome you to Ethics is Essential. [00:04:04] LBW: Thank you so much, Elise. I'm really happy to be here. [00:04:07] EDM: Good. Let's get started. ASHA's code of ethics is derived from a set of principles that are common to many professions' ethics requirements. These principles are first of all autonomy, which relates to a patient's self-determination, and it encompasses confidentiality, and practice keeping. There's also beneficence which refers to compassion and benefit to others. Non-malfeasance, which means not harming or bringing harm to others. Justice, which means acting out of fairness to individuals. Dignity, or preserving, or enhancing a patient's self-worth or wellbeing. Lynne, can you explain how the concept of beneficence relates to the work that speech-language pathologists do in healthcare practice and some of the ethical issues that may arise if we do not honor the principle of beneficence? [00:05:07] LBW: That's a really excellent place to start with this, Elise. I think that it is probably one of the most Ð it is the ethical principle that we as clinicians, no matter what discipline, I believe relate to most strongly. We believe that our duties are to provide recommendations and care that will allow the patient to achieve their best goals. So it's very important. Encompassed in this, this principle of beneficence, that we understand what our duties are in relation to this because beneficence is a little bit tricky, and that when we think about clinical ethics, we think about ethical decision making, ethical practice in a caring profession. It is about the patient. It is about the client. It is what is in that patient's or client's best interest. So it's a balance between understanding what would be perhaps an ideal recommendation, and what the patient would want in that situation, which brings in the principle of autonomy that you mentioned. Now, it is our primary duty to know our discipline and know our profession, to be able to be competent, and excellent in what we do. To understand fully the diagnosis and treatment recommendations that we are using. And to understand that we know what we don't know and when we need to bring in consultation, and when we need to refer a patient to either another provider, either another speech-language pathologist who may have more experience with this particular situation or another clinical provider who may have the right approach or the needed input for a patient. So that is really what is encompassed in the principle of beneficence that we will be making a recommendation and that our care, our input will be to the highest good for the patient. That we will know what we need to know, that they can trust us in coming to a speech-language pathologist for evaluation, and treatment, and that we will be able to give them the best recommendation possible. That is sometimes an interesting challenge, because we see that many of the ethical issues that we face as clinicians occur when there is a conflict between these primary principles that you just articulated. These are four or five ethical principles. Where I had studied, at the University of Chicago and the MacLean Center for Clinical Medical Ethics, the director of that program, Mark Siegler has written a book with two colleagues called Clinical Ethics. It is a very short book, it's very consumable, and they describe a model for looking at ethical challenges. They call it the four-box model because it seeks to balance these principles that we do use in sort of our western bioethics approach to challenges. What they say in that book is that, typically, the largest number of challenges that you'll face as a clinician are balancing our beneficent duty or duty to beneficence to make the good recommendation for a patient and that patient's autonomous choice. That patient's choice about what he or she would want in that situation. I'll give you an example of this. As a speech-language pathologist, you may be working with people who have dysphasia, you may be working with a patient who has had a brain injury, and has a very severe dysphagia where he or she is aspirating. All consistencies of liquid and food in the immediate aftermath of that injury. The patient may be able to talk to you and the patient may Ð you may recommend for his or her safety that they have alternative nutrition and hydration for a period of time as they're working on their swallowing to improve that. The patient may say, "No, I don't want to have a feeding tube or another method of nutrition. I want to eat." How do we deal with that challenge? That is two principles clashing against each other. It's important for us to know that these principles are very important to understand and to understand that when they do come into conflict, there is a hierarchy, if you will, of the principles that we hold most preeminent. In our culture, and in our legal construct, and in our society, it is the principle of autonomy that would take place, take precedence over a beneficent recommendation. [00:10:34] Your patient who is aspirating, very severely, very significantly, you've made a recommendation based on your competent evaluation of that patient's ability, something that will keep that patient the most safe as he or she recovers. And the patient says, "I don't want to use alternative nutrition and hydration." So then we need to evaluate that person's ability to understand the decision that he or she is making. Autonomy and respect for autonomy does not mean, "Well, a patient told me this is what I want, so I'm going to wipe my hands of it. That's what they want, then I'll let them take that risk." Yes, you ultimately actually may need to step away and understand that it is ultimately the patient's choice of what he or she wants. But before that, we have to try, and understand, and evaluate if the patient has the ability to make decisions for him or herself. Does the patient have what we call decision making capacity? Because the principle of autonomy is that a patient with decision-making capacity, or who is considered to be a competent adult has the right to accept or reject medical recommendations. It is that patient's right that is the preeminent principal and right in the situation. But really only if that patient him or herself understands the decision that he or she is making. It's sort of an evaluation that there's no one particular test for, but there are four parameters that we look at when we try and understand if a patient truly understands what he or she is deciding. Now, we most often hear the term competence so that a competent adult can make these decisions. But competence is really a legal definition, or rather, the term incompetent is the legal definition. You have to go to a court of law to prove that an adult lacks competence to participate in legal contracts and to make decisions for him or herself. If we had to wait every time we had a patient or a client who had difficulty because of a medical issue in making decisions, if we had to wait for the courts to decide that, then the courts would be all backed up, and our patients wouldn't be able to get the medical or clinical care that they needed in an effective, efficient way. So clinicians can make a determination of decision-making capacity. The way they do that is to evaluate for that particular question. When we think about competence, if somebody is deemed to be incompetent, that sort of counts for everything. They're not able to engage in any legal contract, they're not able to get married, they're not able to vote, their legal rights are taken away. Not really taken away, but they're provided protection by a ward or by a guardian. Decision-making capacity is really about that particular decision, and you need to evaluate it every single time you're engaging in decision making with a patient. The four parameters are, does the person understand the diagnosis and the prognosis, so sort of the basis of what you're making the recommendation for? Then, does the person understand all of the different treatment options that you're describing, and the consequences of those options, including the possibility of no treatment and what the consequences are of that? Thirdly, does the patient have the ability to make and communicate a choice to you? Then, is that decision on the part of the patient rational? Can he or she describe to you why it is that they want or don't want a particular treatment? I'll say, it is the case usually that we may question a person's decision-making capacity when he or she is taking or making a decision that we think is risky. As a matter of fact, there's an old adage that says patients are considered to be competent until they disagree with the doctor. That's sort of a tongue in cheek. But we sort of take again, it's emblematic that that duty to be beneficent, that we have a more in-depth knowledge of these particular diagnoses and the challenges that patients face. When we're making a recommendation, we feel as beneficent, it causes a lot of distress for clinicians when a patient may disagree. But it's very important for us to understand that in the end, and ultimately, it is the patient's life, it is the patient's quality of life, it is the patient's personal history and background. Their understanding of what is in their own best interest and they're the ones living with the consequences. It's very important for us to know that it is the right approach for it to be the patient's decision, but that we shouldn't just brush our hands and say, "Well, he or she made that decision." But to really take time to make sure the patient understands, and to make sure that we're laying any misinformation, any fears, any concerns about practical implementation of the recommendations that we're making in order to make it truly an autonomous choice that the patient is making. [00:16:43] EDM: I think that your response there, and all of that great information that you've given us is really important. Because one of the things that I think can certainly enter into a decision, like the one that you described, that a patient may have to make is dignity. There certainly are instances in which a client or a patient may feel that their dignity is compromised by following the recommendation of the speech-language pathologist. And of course, that is certainly one of the five principles that becomes important or part of the cornerstone of ASHA's Code of Ethics. So, very interesting. [00:17:24] LBW: Yes, I agree. I think too, with the concept of dignity, you're right, it's very personal. I think this also sort of relates to the concept of quality of life, and what Ð there is dignity and feeling like a whole human being who is able to make choices for him or herself, that that whole concept of autonomy leads to that, that somebody feels competent in running his or her own life. Then, they need to sort of evaluate for themselves, what is the quality of that life. It is important for us to know that that is a very complex question, this whole question of quality of life. Often, we see this as sort of a consideration and ethical decision making and it's a very important one. It's very important for us to understand that wherever possible, we need to try and understand the assessment of quality of life by the person with the lived experience of a particular condition or situation. There are some studies that have been done to try and differentiate the perceived quality of life of other people, for a person who's living with disability or chronic illness, for example. One of those studies is an old study, but I think very interesting and elucidating. It was done in the journal, in the Annals of Emergency Medicine in 1994 by Gary Hart and colleagues. That's where I refer to very often. They took a group of people who were working in an emergency room, and they asked them, "If you had a high cervical spinal cord injury, would you want to be kept alive?" Then they asked a group of people who were actually living with high cervical spinal cord injury, "Are you glad to have been kept alive?" Seventeen percent of the hospital workers, the people who worked in the emergency room said that they would want to be kept alive, and 92% of the people living with high cervical spinal cord injury said they were glad to have been kept alive. Then they went on to ask some other questions. They said, "If you had this type of injury, do you think your quality of life would be average, better than average, below average?" And they asked people living with this level of injury, "What is your quality of life, average, better than average, below average? Eighteen percent of the hospital workers, 18 said that their quality of life would be average or better than average. Everybody else said below average. The people living with the high cervical spinal cord injury, 86% of them said that indeed their quality of life was average or better than average. There are many other studies most often done with people who have had a spinal cord injury, because I think sort of the model, the construct is a very catastrophic injury that impacts sort of daily functioning significantly. But the person more often has preserved cognitive ability. You might be able to then extrapolate this to people who have severe traumatic brain injury or stroke. But a lot of studies done for people with spinal cord injury. Many of the studies, most of the studies demonstrate that other people, perhaps health care workers, in particular, have a more negatively skewed idea of what a person with disability and chronic illness, what their quality of life may be like. It's just an important thing to understand that we come into these decisions, we come into these clinical interactions, we quite frankly come into any relationship in our life with bias, with our own level of experience, our own level of understanding. How many of us who work in health care or in education we're motivated to do that, because we knew somebody in our life who had experienced illness, injury, learning disability, and we wanted to make a difference, because we saw that that difference could really help make quality and dignity to the life of somebody who may have a difference. [00:21:32] EDM: Very excellent point. I think that you're sharing the reference from the 1994 article is really very impactful. Because I think if you would ask most people how they would have thought people would have responded, those without the injury and those with, I think you would have gotten something very different than what the research indicates. [00:21:55] LBW: Yes. [00:21:55] EDM: Thank you. [00:21:56] LBW: You're welcome. [BREAK] [00:21:59] ANNOUNCER: With special rates for all groups of five or more, along with our free student accounts, SpeechTherapyPD.com continues to be the fastest growing CE provider. If you'd liked this podcast and want to hear more, we are offering an audio course subscription special coupon code to listeners of this podcast. Simply enter the word SLPLEARN for $20 off. [INTERVIEW CONTINUES] [00:22:26] EDM: Let me ask you about something else. One of the roles that speech-language pathologist in medical practice may have that our colleagues who work in other environments do not is working with a palliative care or hospice team. Tell us what the speech-language pathologist role might be in palliative care, and the ethical issues related to making decisions about the patient's care, and also ethical issues involved in working with members of the palliative care team. [00:22:57] LBW: Absolutely. I think it's interesting you sort of articulated two different clinical approaches and goals of care for patients. One is encompassed in what we refer to as a palliative care team. The palliative care team seeks to improve a patient's symptomology, their comfort and care. In order to need a palliative care consultation or intervention, a patient does not need to be dying. They do not need to be in a terminal state. Somebody may have need for palliative care, who has had a significant spinal cord injury, or even somebody who's living with a cancer, but cancer that's not terminal, but that is controlled on an oral chemotherapy agent, for example. Who may be experiencing side effects and symptoms from either the treatment itself or from the illness that are sort of ongoing. The medical team really seeks to help that person manage those issues, so that they can maximize their quality of life. They can maximize their functioning, and so that they can participate in as much of their life as possible. When we think about hospice care, hospice care is intended for individuals who have been determined to be in a terminal stage of the dying process. That regardless of intervention, it is predicted that they will pass away within six months. That's the definition of terminal illness. Hospice care is meant to focus very significantly on pain management. It typically involves removing active medical treatments and treatments for cure, I should stipulate. But to be very aggressive in being able to manage the symptoms of pain, perhaps of discomfort while still maximizing a person's ability to interact with his or her environment to the end. As I said, palliative care seeks to maximize that function and that interaction, but a person is not necessarily in the end stages of their life. Now, speech pathologist, unfortunately, I can't pull up the reference for you at the moment. But there have been in the last 10 years palliative care groups that have outlined the roles of all the different interprofessional team members that are a value in palliative care, and hospice and speech-language pathologists are absolutely part of that team. In these situations, a speech-language pathologist would seek to help the patient with their swallowing, help make sure that Ð we talked about dignity and quality of life. If somebody is, especially at the end of their life, we would want to help them meet their goals of care for eating. Even though a patient might be aspirating, and might be at risk for developing pneumonia, maybe it is a more important goal to them to share meals or to share some social food situations and settings with their family members or their friends. So finding ways even if a patient has severe dysphagia, that he or she may be able to do that in the safest way so that they can maximize the time that they have or the challenges that they have. Again, let me differentiate between hospice care, which is end of life in a terminal situation, and palliative care, which can encompass end of life, but also can be implemented when somebody is not dying. But to really think about, again, not curing a situation, but helping somebody manage those symptoms. I think that one of the things in recent years that I have known of that speech pathologists participate in, in situations of hospice or palliative care, is to help anticipate the you know, decline of somebody's communication skills. Say somebody may have a brain tumor that is inoperable, and that chemotherapy or radiation is unable to treat. If that brain tumor is growing, he or she may have declining skills and communication. Speech pathologists are helping patients do things like voice banking, so that they can record a person's voice so that if there comes a time that the patient is no longer able to speak, then they're able to perhaps use an augmentative communication system with their own voice. I know of a speech pathologist who works at the children's hospital here, who told a story where, as a child was declining, he would record, "I love you, mom." Then, they put it on to a player that every time they hit the big red button, he was able to hear in his own voice, and his mother was able to hear, "I love you, mom." Being able to be creative and understanding that what we're doing is helping people maximize their own goals of care on their own goals for functioning, knowing that based on their diagnosis, we're not able to affect a cure or affect an improvement. We're really trying to help them maximize their function, focus on family training, and to help people be able to manage their daily life more comfortably and at the highest level of ability possible. [00:29:03] EDM: Very interesting. Thank you. Thank you. [00:29:06] LBW: You're welcome. [00:29:07] EDM: Palliative care teams and hospice care teams. All right, let's go on to another aspect of this discussion of ethics. Medical practice sometimes requires making very critical decisions about patient care, that can have very important consequences. You have mentioned some of those. Making the wrong recommendation about the consistency of a patient's diet, or not being able to distinguish when a child who is hyper nasal needs speech therapy as opposed to surgery can lead to some dire consequences. Lynne, talk to us based on your experience with the pressures involved in the medical, and healthcare environment, and how ethics are involved. [00:29:52] LBW: That's a really good question. I think something that does come up, especially when people Ð I would say that in general, medical care is delivered and practiced in teams. Very often, more often these days in interprofessional teams. It is a challenge to try and think about, "Am I able to know absolutely everything I need to know in order to make the best recommendation for this client, for this patient, for this child?" It is very important, again, to kind of be able to know what we don't know, that is critically important to be at. One of the things that is preeminent in our code of ethics is that we be competent in what we are doing. As a matter of fact, I know sort of from a professional ethics standpoint, a question often comes up, concern comes up when we as a clinician, as a professional are being asked to do something that we don't feel like we have the proper training to do. For example, if I was tomorrow given an evaluation for a patient who had significant head neck cancer, I would not be the competent person to manage that patient's caseload. There's sort of all kinds of things that go into that. What if I was the only speech pathologist in a rural hospital and that was the patient who came to me? Even though I had never seen that kind of diagnosis before, how would I manage that? Because the alternative is that, the patient either doesn't get seen by a speech pathologist, or I'm recommending perhaps that the patient go four hours away to the next hospital, where there is a speech pathologist who has that kind of training. I think we're luckier today than we have been, since I began in the field of speech pathology to have tremendous amount of technology to help us achieve consultation with other professionals. I think that sort of first and foremost, we should be engaging with our interprofessional teams to make sure that we are understanding well what the patient's full diagnostic picture is, what the patient's goals of care are. And being able to investigate and bounce ideas off of other clinicians. Maybe not for a particular patient case, but always making sure that we are educating ourselves. I mean, as professions go, speech-language pathology and audiology are leaders in making sure that we have continuing education and that we are constantly updating ourselves on the latest evidence in clinical interventions and diagnostics. I think that that is critically important. I think it's interesting, I became a speech-language pathologist in the early 1990s. At that time, probably the field of dysphagia and speech language pathologist involvement in diagnosing and treating patients with dysphagia, was probably about 10 years along. We're very young in that area and it is remains of the most high-risk area that we engage in as clinicians. I worked in Chicago and I had interactions with the late great, Jeri Logemann. She would always in every single presentation would put some fear in us to make sure that everybody understood that responsibility, that they really understood the intense need to know for certain how we would investigate the challenges that patients face, that we would know the literature, that we would know exactly the right procedures, and how to measure them, and how to track outcomes, and how to help patients move forward when there are situations of risk. It is an area that I think today still causes some angst, but I think that it needs to be true as you sort of imply in in your question of all of the areas that we work with, for patients. I think that the critical approach is to make sure that we are communicating with the interprofessional team that is critical for that patient's care, that we truly understand the information that we have, that we are fully competent in the area that we are practicing in. And if we have any need for increased knowledge that we are getting it and that we are seeking out consultation that would help in these situations. We need to make sure that we are working toward the safety of our patients by communicating very effectively with other individuals. [00:34:55] But I think that, sort of to your first question about beneficence and autonomy, it's unnerving when a patient may take risks. So say, we know what we're doing, we're making a beneficent recommendation based on the best understanding of that patient's diagnosis and needed treatment. The patient decides that he or she is not going to accept what the medical community may term the safest recommendation. That's very unnerving, because we may feel some level of responsibility in that situation. I will say, when I first started practicing as a speech-language pathologist, there was a lot of controversy about how we would as a clinician proceed in a situation where a patient refused a recommendation that we felt to be safe and good. In those settings, there were prominent people in our field who said, "If you have a patient who refuses to accept your recommendation of alternative nutrition and hydration, then you should sign off the case." I will say that, it is something that we have evolved past, I'm very happy to say, because there is that more evolved understanding that, again, when the patient truly understands the options in front of them, and they have the decision-making capacity to make that choice, it is most important for the patient to choose for him or herself. That, we as a professional, have a tremendous amount of knowledge about what will help that patient, be safest in that situation. It may not be something that is going to eliminate the risk of aspiration or even reduce the risk of aspiration to the highest level, but how can we help a patient meet that patient's goals in the safest way possible in the most practical plan possible, because we have that knowledge. Now, it's very, very, very important in these situations, that we document our decision-making process, the information that we are exchanging with patients very carefully. I will say, this is one thing to really understand is that, when we are making an initial recommendation for a patient, it is critically important that we make the recommendation that we know to be the best and safest recommendation. That is the recommendation we should document. Then, if we go through a process of understanding that we have a patient who has decision making capacity, who has decided for him or herself, that he or she does not want to accept that recommendation, we need to be able to document that interaction process. So we first document the recommendation that we made, then we say, the patient accepted or rejected. If they rejected, we should always make some kind of indication that the patient has decision making capacity, and that we have some understanding of that. Then, we would say why that patient may not want to accept that recommendation. This is helpful, not most importantly to the entire clinical team, to help the team understand where that patient is in their thinking right then and there when they're making that decision. Then you go on to document what the modified recommendations are, and how the plan is going to be carried out. I would say that the biggest challenge to this is when patients in dysphagia management can't feed themselves, and they may make the choice to continue to eat in a situation where they are aspirating. That can be a little tricky, and I think that you most facilities, most clinical facilities, if a patient is living in a residential facility or an institution will have ways of managing that. It is, again, first and foremost that we respect the rights and the dignity of the patient. But you know, there are certain situations that an institution may not want to accept that level of risk, and may try and work with the patient or the family to determine who should be the feeder who should help that patient eat. But it's very important that, again, we try to find a path that meets that patient's goals of care for him or herself. [00:39:57] EDM: The idea of a patient who has dysphasia not taking the advice or following the direction of the speech-language pathologist's input is very sobering, especially when we know what the consequences can be. I really appreciate you bringing this to the fore, because I think probably for at least some of our listeners, you've really given some strategies for how to deal with that type of a situation and maintaining our ethics, and doing what is in the best interest of the patient. [00:40:36] LBW: Talking about strategy, as I just do want to put a plug in for the fact that in most of the care settings that we work in, and in the school setting, there will be a mechanism for helping clinicians, professionals, patients, and their stakeholders in dealing with these very difficult challenges. In a hospital, it may be an ethics committee or an ethics consultation service. There may be other mechanisms in clinical care in clinics, and there may be something different in the school systems that relate to the professional committees and groups within the school. There's always help out there. In addition to that, ASHA is amazing in the kinds of support and resources it provides to all of us as members. You can call the health care services line and they will help provide you with input, with written resources, and sometimes connect you with a professional who has experience in this area. I think we're very lucky in that regard, and you should always ask for help. You should never ever, ever struggle on your own. [00:41:55] EDM: Excellent advice. [BREAK] [00:41:57] ANNOUNCER: Are you taking advantage of our new amazing feature, the certificate tracker, the free CE tracker allows you to keep track of all of your CEUs, whether they are earned with us at SpeechTherapyPD.com or through another provider. Simply upload your certificate to your registered account and you're all set. So come join the fastest growing CE provider, SpeechTherapyPD.com. [INTERVIEW CONTINUES] [00:42:25] EDM: Let me ask you about something else and you've kind of touched on this. I've recently become aware of a topic that I perhaps had not given a lot of thought to in the past, and at least not until I got some additional information. That topic is patient safety, which of course is patients, very, very important. Once I began to think about it and got some more information about it, I was really impressed with the importance of patient safety. Please share with us some of your thoughts about that topic, patient safety. I know you're going to raise some points that are important for all speech language pathologist to be mindful of. [00:43:09] LBW: Sure. I think that Ð now, we know actually that it is in ASHA's strategic plan that we will implement interprofessional education and interprofessional practice by our 100th anniversary year. And we have goals in many different committees and groups toward that end. It's interesting to know that the whole concept of interprofessional practice is sort of an evolved notion of the interdisciplinary team. But it was really sort of developed for a particular reason, and that is that hospitals are not very safe places to be. There are a lot of injuries and a lot of mistakes that occur. It's a top reason for patient death. Would be an eye atherogenic error or something that was caused by the care itself. While that is understandable, because we are in a human system and errors can be made because of communication problems, because there are multiple people taking care of patients and you have to hand over the care to different people who may or may not have the same background information. There's a lot of reasons why there can be errors and in situations where you're dealing with toxic medications, with treatments, they can be fatal. Certainly, for patients who are very tenuous, we want to be able to make sure that we're watching them well. This notion of interprofessional practice really grew out of the World Health Organization really wanting to make sure that we have mechanisms in place to provide the safest possible care for our patients to truly understand what the pitfalls are and what the potential challenges are. So safety and quality of care more critically important. One of the biggest challenges is different professional disciplines not feeling entitled enough to raise issues of safety about a patient. For example, somebody might see that something's off about a patient or that a procedure doesn't appear to have been done in the same way that they may understand it to be done, but they don't feel like they have the authority to say something about that situation. The notions and the competencies of interprofessional practice are that each one of us has a significant role in assuring that we speak up about these situations. That even if it's not in our scope of practice, but we're noticing something that we think is unusual or different from what we know it to be, that we should raise that issue, that we should ask the question. Now, I think that related to this, and also, I think Elise, related to the kinds of challenges and ethical issues we face, sometimes we're very concerned that something is happening with the patient and it's not the right thing. It is all too easy to jump to the conclusion that somebody else is doing something that is wrong and we may not have the information. We may not know that there was something else that that made it necessary to do it in that particular way. The most important thing we do is to speak up, and to ask the question, and to have sort of a positive benefit of the doubt. But ask for clarity, and make sure that we are saying something about the situation. Each one of us has a very important role in that. It could be that a patient is feeling dizzy, but we're not sure that that you know, has anything to do with something that might be terribly bad for him or her. But if we never say that to the nurse when we bring the patient back to the room, and then the patient gets up to walk to the bathroom, and falls, and has a significant injury. There could have been probably three or four times along the morning, so we do that as a teaching case. Patient gets up in the morning feeling a little nauseated, doesn't eat his or her breakfast, goes to physical therapy, comes back to the room, is working with the speech pathologist or the audiologist and says that he's feeling a little bit dizzy. And maybe even says that he told somebody else on the team. If we never say something, and the patient gets up and falls, that's a missed opportunity first at the minimum, and we want to make sure that we are always communicating differences about that patient for his or her safety. [00:48:28] EDM: I've even been reminded that something that may not be physically quite as dire as what you've described. But coming up with the wrong raw score on an assessment can certainly jeopardize intervention, and treatment, and could be, certainly could be considered something that aggregates the patient's safety in terms of progress and rehabilitation. It's a term that I think has a very broad meaning and very broad implications, not only in the medical setting, but in any setting in which we're working with clients. Whether it's in a hospital, rehabilitation situation, school or whatever. [00:49:13] LBW: Absolutely. I think to that point as well is, we've got to be so careful about the accuracy of our documentation and being able to describe variants, et cetera, et cetera, and understanding that, whether it be educational records or medical records. Sometimes those errors can follow a patient and to your point, can really affect later issues in receiving the best and most efficient care. [00:49:42] EDM: You've had a lot of experience working with people who have suffered strokes and you're very knowledgeable about stroke rehabilitation. Are there ethical issues that are specific to stroke or stroke rehab as opposed to other disorders? [00:49:59] LBW: That's a really interesting point that you make? Because yes, I think there are. It's actually something I have talked about in different presentations that I've given. Because one of the most important things that we can do for ourselves as clinicians is to really understand. When I start talks usually about ethics, I say that ethics and ethical challenges in the language of how we evaluate an ethical issue is a language and a universal sort of approach that transcends each different clinical discipline and what our skills are in those areas. We need to try and understand the ethical principles that we use to help support patients when there are challenges and conflicts in what our duties are to patients. I try to also help differentiate the notion of what is an ethical issue with issues of moral distress. Moral distress is something that I was sort of describing a little bit ago when I said that, it's a challenge when we feel that there's just something not right, but we may not necessarily have the authority to make a different decision. We might be concerned that a patient has a diagnosis, that's incorrect. I mean, many times in my practice, I've been concerned about a patient coming into the hospital, and receiving an initial diagnosis, and then I might go and see that patient, and he or she may have communication or swallowing impairments that don't reflect that diagnosis. I'm feeling distressed about this. How do I manage this? How do I go about this? I would go, and I would talk to the clinician who made that initial diagnosis. I would say, "Dr. So and So, I am wondering. This is what I saw in my evaluation today. I'm curious to know, it appears to be inconsistent with the evaluation and the diagnosis. Perhaps we're seeing an evolved situation here." Always sort of raise that. This notion of moral distress is something that is talked about. It's actually written about a lot for nurses and for resident physicians. People who are involved in the medical team are on the health care team, who are not sort of the primary decision maker and the primary driver of the treatment plan. They may feel these situations where something's happening. There's a great nurse ethicist named Ann Hamrick, who's written about the topic of moral distress a lot. She talks about clinicians who work in a particular setting may feel this level of moral distress, when another type Ð when a case happens frequently. She did a survey, a study with a pediatric intensive care unit, where they went to talk to the team about the moral distress they felt about a particular case. It was a case of a child who was very, very ill on the edge of life, and there had been a lot of medical intervention. Some team members were very concerned that the intervention caused that child suffering and pain. The ratio of benefit to burden was negative for that child and the child ultimately passed away. When Ann Hamrick went and talked to the people in that unit about that case, she said, almost invariably, each one of the clinicians in all different disciplines said, "Oh, this situation was horrible. It reminded me exactly of the case of X. It reminded me exactly of the time when this happened before." She describes this notion of the crescendo effect. Something happened, you see it, and then you anticipate it. When it happens again, you feel tremendous distress, and then it may dissipate based on the change, a discharge of a patient, maybe a termination or the passing of a patient. But it's the notion too that when you are working in a particular clinical area, or an education with a particular group of students, you will see the same kinds of challenges. Just like you'll see the same kinds of clinical challenges that we will work with, and that we will help to develop exceptional interventions for patients, we will see the same kinds of ethical challenges. For somebody who has had a stroke, some predictable ethical challenges are. This is the reason, quite frankly, that I became interested in clinical ethics and wanted to learn more about it were two reasons. One is dysphasia. I would have these situations where a patient would have very severe swallowing impairments, and would refuse to accept the recommendation of having alternative nutrition and hydration. The other was communication impairments. So we've talked about autonomy, we've talked about beneficence. What I didn't say which I should have, of course led with, which is that, an ethical approach to clinical care and to care delivery is to engage in shared decision making. It is the meeting of our duties as a professional, our understanding of professional practice and what is best care, how we diagnose, how we treat, et cetera, et cetera with the patient's autonomous choice, that patient's preferences. When somebody has had a stroke and impairs their communication, they are very often left out of that shared decision-making process. For somebody with aphasia, they may be able to participate at a higher level if we know the right facilitation, and supports, and augmentative techniques for that patient. But not every clinician on the team knows that. So the speech pathologist may be in a unique position to help support that patient's maximal autonomy in decision making for that patient. On the other hand, if a patient has a stroke, and they have impairment to their non-language hemisphere of the brain, they may have the ability to communicate, to converse, to articulate, but they may not have the ability to really truly understand or comprehend the consequences of their decisions. They may be brought into that shared decision making, but they're not understanding, they may have anosognosia, difficulty recognizing the effect of their impairments. That's also an issue of moral distress and an ethical challenge when perhaps the patient says, "No, I think I'll be fine going home. I can get up and walk to the bathroom in my house," but they have dense hemiplegia and they're believed because they have the ability to talk. I think that we will see and we do you see recurring kinds of challenges. But that's something that I think all good ethics consultation services and ethics committees do is to try and help provide preventive ethics education. How do we put ourselves out of a job in terms of needing to have the ethics committee there every single time this kind of thing arises, because as I said, may be common. How do we help arm clinicians to understand the resources, the approach for gathering information, for bringing stakeholders together to be able to understand the ethical question, and to help us understand the range of ethically acceptable options in these particular situations that can happen more frequently? [00:57:36] EDM: Great. Let me ask you one more thing. Medical speech-language pathologists are likely to have patients and clients from diverse cultures and backgrounds. Talk to us a little bit about the relationship of ethics to cultural competence and cultural sensitivity. [00:57:53] LBW: That's a wonderful question. I would say, depending on when the audience is listening to this, there's a new movie out right now called The Farewell, which is about a Chinese-American family, who go back to China ostensibly for the wedding of a cousin. But the whole family is conspiring to really have a celebration for their beloved grandmother because she has a terminal diagnosis and this will be the farewell to her. It sort of reflects that in our Western bioethics model, we hold autonomy the person, the patient, the central character, that it's their choice, their understanding, their ability to make this decision to the point that in hospital care. We know this for ourselves as patients, that the laws of HIPAA and sort of the mandates for confidentiality may sort of keep people who are very important in our own personal decision making away from the information. Many other cultures approach this notion of healthcare decision making, especially when the news is not good in a different way. There are many cultures that we might term as being paternalistic, which means that somebody else in an authoritative role will take the approach of knowing what is best for that, for the patient, and protecting them from bad news. Cultural competent care is critically important if you are working in a setting that is a joint commission approved clinic, you will be required to have training in this area. We're certainly required to have it in the schools as well. But what is most important in understanding this is to be able to understand and respect that there are differences, to be able to have some working knowledge of what these differences may be. But then to understand that every individual who is in a particular culture does not necessarily ascribe to what we would consider cultural norms. So we still should make sure that we are trying to help support and promote the autonomy of each individual person. We can do this in a way that still respects their cultural context. For example, let's say we took the case of that movie that I was just describing. What if that Chinese grandmother were a patient in a hospital in America, and the patient's eldest daughter came to us and said, "You have said that my mother or we believe that my mother has cancer, because of the Ð I have some medical knowledge. If she has cancer, we don't want you to tell her that she is dying. We don't want you to tell her that she has cancer. Please don't share the diagnosis with her." Now, we might think, "Well, isn't that robbing somebody of understanding what they're facing, and being able to settle their own affairs and being able to engage with their family, and to do things that are meaningful to them at the end of their life?" The way we can discern that and support that is to ask the patient, say, "Mrs. Jones, how do you want us to engage with you about medical information and medical decisions? Do you want us to tell you directly? Would you like us to talk with you with your family members present? Would you like perhaps us to talk with your family members without you?" Doing this and in the context, when family members aren't present is sort of best practice to make sure that we truly are understanding what the patient's perspectives are. But then to recognize that when the patient says, "No, I'd prefer that my son make that choice," that we respect that, but that we continue to try and support the patient and the family to be making the most autonomous choices and to be making the most supported decisions when that occurs. Continued education, continued information may help to create an option that perhaps a patient or family did not think about because they've not been exposed to it before. [01:02:38] EDM: Well, Lynne, thank you so much for being with us today. You have provided us with some very important information, and ideas that I'm sure we'll be reflecting on and an awful lot to think about. I know our listeners will benefit from what you've given us on the topic of ethics and ethical practice in the field of medical speech-language pathology, because ethics is essential. Thank you so much. [01:03:06] LBW: Thank you, Elise. [END OF EPISODE] [01:03:13] ANNOUNCER: Thanks for joining us at SLP Learning Series. Remember to go to SpeechTherapyPD.com to learn more about earning ASHA CEUs. We appreciate your positive reviews, and support and we'd love for you to write a quick review and subscribe. If you'd like this and want to hear more, we're offering an audio course subscriptions special coupon code to listeners of this podcast. Type the word SLPLEARN for $20 off. With hundreds of audio courses on demand, a new course is released weekly. It's only $59 per year with a code. Visit SpeechTherapyPD.com and start earning ASHA CEUs today. [END] SLPL 04 Transcript ©Ê2022 SLP Learning 1