E9 - Ethics in Rehabilitation Practice
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[00:01:04] Okay, welcome, Dr. McFarland and Lynne. 
[00:01:07] Dr. McFarland: Welcome to All Things Ethics. I'm your host, Dr. Elise Davis McFarland, and today we're discussing ethics in rehabilitation practice. A person who has suffered an illness or medical condition that affects their ability to communicate and requires acute care in a hospital may need continued rehabilitative care and therapy after release from the hospital.
[00:01:32] Persons who have suffered a stroke that affects their ability to communicate, traumatic brain injury that results in cognitive dysfunction, patients who suffer from dysphagia, those who have progressive neurological disorders, or any condition that affects the vocal and pharyngeal tracts may require rehabilitative therapy.
[00:01:54] Speech language pathologists who specialize in providing rehabilitative services may initiate therapy services immediately after acute care has been provided, or at any time after the onset of the condition that caused the patient's communication ability to deteriorate. To be compromised.
[00:02:14] Rehabilitation services can begin in the hospital and continue on an outcome outpatient basis at the patient's home or in long term care facilities. The interdisciplinary nature of the rehabilitation requires the speech language pathologist to be in close coordination with physicians, nurses, physical and occupational therapists, audiologists, and other professionals.
[00:02:42] who are working to help rehab patients reach their functional potential. In some instances, co treatment with other members of the rehab team helps facilitate the team's rehabilitation goals for the patient. Speech language pathologists in rehab settings have to be aware of the ethical requirements of their positions.
[00:03:03] Questions such as how do you know when you have legitimate consent from a patient who has a cognitive disability? Are there situations involving religious liberty and freedom that conflict? Best treatment. What is the speech language pathologist ethical responsibility? If there's a question about the need for a legitimacy of a treatment or technique that another member of the team is using with the patient, those are some of the ethical dilemmas that might arise for the speech language pathologist in a rehabilitation practice.
[00:03:40] So let me introduce my guest for this podcast. Today, Lynne Brady Wagner will be talking with me about ethics in rehabilitation practices. She's a speech language pathologist and the chief learning officer for the Spaulding Rehabilitation Network in Boston, Massachusetts, where she chairs the ethics advisory committee and is the director of the clinical scholars program.
[00:04:08] She is also the associate director of the Spaulding Stroke Rehabilitation Network. Research and Recovery Institute. Lynne has a master's degree in speech language pathology and a graduate certificate in health care ethics. She's a former member of ASHA's Board of Ethics, and she's also an adjunct clinical assistant professor and teaches health care ethics at the Massachusetts General Hospital Institute for Health Professions.
[00:04:38] She's a faculty associate of the Harvard Medical School Center for bioethics. She has numerous publications and peer review 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 welcome to all things ethics.
[00:05:02] Lynne: Thank you. Elise. I'm so happy to be here. Thank you 
[00:05:05] Dr. McFarland: Let's begin with a situation that is not uncommon in rehabilitation settings, when providing care for a person who may have diminished decisional capacity due to stroke, traumatic brain injury, or other condition. In such cases, how do clinicians engage with surrogate decision makers, and what are the ethics of that kind of situation.
[00:05:30] Lynne: Thanks, Elyse. I'm so glad that you raised this because I think that as speech language pathologists and really for. Most clinicians, I would say this is one of the most common challenges that we may face in our practice when there's a concern. Well, certainly when we are making recommendations for a patient that are based on what we believe is our duty to provide them with best treatment with a best approach and Especially in circumstances where a patient may disagree with that, we might have concerns about whether that patient truly understood.
[00:06:09] But in all cases, we want to make sure that the process we use for engaging in shared decision making, which is a process that is often referred to as informed consent is informed. being carried out with a patient who's truly able to understand the points of information that we are sharing and providing to him or her.
[00:06:33] Or to them, and you know, critical to this is to making sure that we are that we've evaluated the person's decision making capacity. And just to make the point, I know we talked about this on a previous podcast, but that point between the concepts of competency and decision making capacity competency is a, legal term or rather incompetence is a legal term. It needs to be proven in a court of law and an adult who is proven incompetent in a court of law then requires a guardian because they lose their legal decision making. Ability their ability to engage in all legal contracts and approving or refusing medical care is one of those legal interactions. So it's important that we understand that, you know, if, if we were required to go to the courts in all cases where we had questions about a patient's decision, making capacity, the courts would be very backed up and we wouldn't be able to provide the care that patients need. So there is a clinical.
[00:07:42] construct called decision making capacity. There's no single test for this, but there are four critical components. First of all, we need to make sure that the patient is able to understand the information given to him or her or them. So to understand their diagnosis, their prognosis, and that they furthermore understand all the treatment options.
[00:08:07] Do they really understand what those mean, what the consequences are of those treatment options, including the option of no treatment? What would happen in that case? So can they understand, sort of in general, can they understand the particulars of the recommendations and the options, including no treatment?
[00:08:26] Can they make and communicate a choice? That's the third thing. And do they have a rationale for this? Do, can we understand where they're coming from from this? Because people make decisions for a, a wide range of reasons in their own personal life. As you mentioned before, religion certainly their own experiences in their life.
[00:08:48] They may have had somebody in their family who's experienced this particular kind of medical situation. That gave them you know, strong thoughts about what they would do if this were to happen to them. And so, we need to understand where they're coming from. It doesn't have to be rational to us, but we need to make sure that they are making this decision based on things that are sound and factual so that we can also make sure that we're giving them the right information, that we are allaying fears that may not be founded, that we are you know, reversing concerns that may not be grounded in, in evidence.
[00:09:26] So, those are the kinds of things that we need to think about in order to. Determine a person's decision making capacity. If somebody does not have decision making capacity, or they have been deemed incompetent in a court of law, if they've gone to court and been deemed incompetent, then we have a, a written guardian.
[00:09:48] We know who's been appointed as their legal decision maker for somebody who lacks decision making capacity. At that point, the attending physician in their case would then enact a health care proxy. If the person had named a health care proxy. So, a health care proxy is an advanced directive where a person named somebody who they wish to speak on their behalf.
[00:10:15] If they're unable. To speak for themselves and surrogates are generally able to make the same decision that a patient would have been able to make if he or she were, had decision making capacity, so a surrogate has the right to accept medical treatment on the patient's behalf. They also have the right to refuse medical treatment on the patient's behalf.
[00:10:41] But we don't ask those surrogates to tell us what they believe they would want in this situation. So we don't say, Mrs. Jones, your husband is unable to make this choice. What do you want us to do? We say, Mrs. Jones, what would your husband want? In this particular situation, so in that we're asking that surrogate to use what we term substituted judgment that they know what their loved one, what their close friend would have done in that situation.
[00:11:15] So, there's there's substituted judgment based on previous conversations based on their understanding from discussion of their values and. If they don't know, if it simply hasn't come up or something that they wouldn't have considered, then we ask that surrogate to use something called the best interest standard.
[00:11:35] And that is weighing the risks and benefits, the harms and, and benefits of this particular treatment and trying to apply what they know of their loved one and what choices he or she might make based on the trade offs of quality of life and value and interaction and ability to leave the hospital and all of those kinds of things.
[00:11:58] We set a very high bar to ever question a surrogate decision maker and their good faith in making these decisions, especially because When, when a patient has a health care proxy where they have written an advanced directive and, you know, before they get sick, it's what the patient would have wanted.
[00:12:25] So it's an extension of that patient's autonomy. And we sort of talked about those principles, those primary principles that we follow for making ethical shared decision making. And that is that primarily a patient who has decision making capacity has the right, the ultimate right to decide what happens to him or her.
[00:12:46] And so naming a health care proxy is really one of our best extensions of that, how we protect a person's autonomy when that person is unable to make decisions. choices for him or herself. Well, healthcare providers may have the very best intentions and may know the efficacy of the medical treatments and the clinical treatments better than a healthcare proxy that health or a patient for that matter.
[00:13:15] That patient speaks for themselves that health care proxy speaks for themselves. They are the experts in their own life. And so it's very important that we remember that it's not to say that we would never be concerned about the decision making of a surrogate decision maker. Be that, you know, perhaps a surrogate decision maker, him or herself, demonstrates some challenges in their ability to understand and process the information.
[00:13:43] Would they be considered competent or capacitant to make decisions themselves? That's, that can come up. Very, very, very rarely would that surrogate decision maker be expressing you know, ill intent you know, where they might be making decisions on behalf of the patient that would be in their own best interest and not in the patient's.
[00:14:06] So those things certainly should be you know, considered and questioned, but we need to recognize that. We want to try and help and support the surrogate in this decision making as we would a patient. In these circumstances. Now, if I asked the audience that's listening today to raise their hand if they have a advance directive in place themselves.
[00:14:29] Do they have, have they named a surrogate decision maker? I would imagine that it would be less than 50 percent of the audience. And that's what we see in clinics and in, in hospitals and in you know, healthcare settings that not everybody has an advanced directive. And typically what we would then do is go to the next of kin.
[00:14:52] And in most circumstances, there would be that de facto discussion with a next of kin. There are some states that actually have. statute in place that guides clinical teams to know what a hierarchical list of next of kin might be from a person's spouse to their adult children, and then maybe to their living parents or their siblings on down to a close friend.
[00:15:20] Many states do not have that. And so in those circumstances, typically we turn to that de facto surrogate. And usually there's good comfort in understanding that person's making choices. I would say that it becomes a problem. We, we start to question whether or not we should raise this to a legal process of going to seek guardianship if there's disagreement amongst family members, amongst those de facto family members.
[00:15:52] If there's significant concern on the part of the clinical team that the The person that's speaking on the patient's behalf really is not understanding, engaged or speaking in that patient's best interest. But there are, you know, those, those things in place, you know, a guardianship for patients who require it, but most much more common a surrogate decision making process with a healthcare proxy.
[00:16:20] That's been named by a patient. 
[00:16:24] Dr. McFarland: Well, that is very useful information and really pretty comprehensive which is great. But you certainly have reminded all of us in terms of what our responsibility is as individuals and family members in terms of having, or making sure that someone has decision making capacity in the event of incapacitation of the family member.
[00:16:49] Lynne: Yes, and you raise a good point related to that. So every state has its own rules around how we identify whether a person has decision making capacity or not. Most states require that this decision or this assessment is made by a patient's attending physician. And or some states include psychology, psychiatry, and that no state that I know of indicates that it's within the scope of practice specifically for a speech pathologist to determine whether a patient has decision making capacity.
[00:17:25] But surely in. All of our teams where we are present and engaging with patients the information that we can share lend to that decision. So, you know, we're talking about the context of rehabilitation. I will say on stroke units that, that I am aware of and have been involved in, have grown to develop a process, for example, for assessing decision making capacity for patients who have.
[00:17:51] severe dysphagia, severe dysarthria where they may go in with the psychiatrist or the attending physician to facilitate the compensatory communication strategies that that patient may be able to use to really determine The level at which that patient can engage in decisions. And one thing that I did neglect to mention is that, you know, in the dichotomy between competence and decision making capacity, competence is global.
[00:18:19] It's a blanket determination about all decisions, but decision making capacity is really, really meant to be decision specific. So there can be a decision that is very complex, whether or not somebody with Cancer should have cancerous tumor in their bone should have their leg amputated. A patient may not be able to engage in that level of decision because of whatever organic brain syndrome may be going on for him or her or them.
[00:18:50] But they may be able to, at the same time, tell you who could be the person to make decisions on their behalf and engage in those decisions. So there is what we call a sliding scale. With the sort of the weightiness of the information and the patient's ability to comprehend to way to recount back and all of those things.
[00:19:14] Dr. McFarland: All right, so, let me thank you very much for that. Let me let's go on to something else that that I have a question about and that is, in relation to the concept of autonomy, which is 1 of the principles upon which ashes code of ethics was developed so that we seek our patients and their families or surrogates input about their communication goals.
[00:19:40] And sometimes we may even solicit their ideas about therapy. But what are the ethical issues that can arise when there's a request for ineffective therapy by the patient or even a colleague on the therapy team? 
[00:19:56] Lynne: That's a really excellent question. And I think, you know, something that is directly in line with, with you know, concerns that speech pathologists may face.
[00:20:05] And certainly these kinds of decisions are asked by other health of other healthcare professionals as well. Sort of the kind of question you're asking hearkens me back to you know, discussions in healthcare ethics in the past 15 to 20 years around the concept of medical futility. You know, statements that this or that treatment may be futile.
[00:20:31] And therefore, what is our obligation to engage or to refuse to be involved in that kind of, of treatment? And That that discussion has evolved. I am very fortunate to be you know, here in in Boston, where there are many ethics resources. 1 of the ethics resources that is available. Some of their, their decisions and and writing is available online at the.
[00:20:57] Harvard Medical School Center for Bioethics is the Community Ethics Committee. And this is a large group of individuals who are community members across the lifespan with different experiences in their life, different educational backgrounds. Who come together and consider ethical questions.
[00:21:18] One of the questions they dealt with several years ago was this concept of medical futility, and they have a wonderful process where they are very deliberative with all stakeholders. Throughout the medical care system and through the community to really understand how determine different determinations might affect their life and their interactions based on these questions.
[00:21:44] And 1 of the very 1st things they usually do when they're considering a case like this is to change the language so that it is truly much more reflective. of the challenge or the problem, and that it's so it's nonjudgmental. And so when they dealt with this question of medical futility they changed that language to what is the obligation of healthcare providers to engage in ineffective treatments.
[00:22:11] And so, they have a wonderful white paper that they wrote that I would definitely refer people to. But I think that, you know, when clinicians are faced with these questions the kinds of, of things that are being asked of them may not be quite so clear cut. in terms of whether or not they will be effective for this person or that person.
[00:22:33] I would say, I would argue that much of what we do in our medical care is uncertain. In rehabilitation especially, I think one of the, the overall obligations we all have is to increase our data regarding outcomes and regarding the kinds of treatments that are efficacious, those patients who do benefit from them.
[00:22:55] Most are we able to identify subsets and and what is best for them. So we need to improve the data ourselves to understand these questions. But in a case by case, one on one basis, I would say that you know, you want to weigh, of course what is known or, or considered to be harmful to that patient.
[00:23:18] Person, and we would never want to engage in something where you know, it was truly harmful with no known or professionally understood benefit, of course but when there is uncertainty about that, you know, when there's concern, perhaps that this person had an illness or an injury that resulted in their communication impairment long, long ago, and we are not sure that That a treatment at this time will result in any change.
[00:23:47] There can be something that we can do to evaluate that. And that's called a time limited trial. So when there's, you know, situations of uncertainty and and sometimes, too, this can help. When we are recommending something to a patient and they refuse, they don't want to engage in this because they're concerned about the harm benefit ratio, we could recommend a time limited trial to evaluate what the result will be for that patient. So, you know, if there is something that people feel strongly about, people may have some evidence for there's absolutely, you know, nothing that tells us that there's a better standard of, of evidence that we should be doing then engaging in potentially a time limited trial might be useful.
[00:24:40] So, again, in the example of somebody coming after, you know, very long, onset of their disability. You know, crafting a time limited trial that's really has identifiable endpoints and evaluation points can be useful in that situation, both to determine the certainty of that and also to help patients understand you know, where the efficacy of these treatments are.
[00:25:06] Are going you know, speech pathologists should be involved in, in their teams and sharing you know, this, this kind of concern on behalf of their patients and also in engaging with other team members when we're talking about, you know, what, what goals of patient care are. 
[00:25:26] Dr. McFarland: So, the, the idea of of relying on information about evidence based treatments, as well as this idea of time limited trials, both of those sound like really good ways to approach trying to determine whether or not something that families or patients want really is effective.
[00:25:46] Sounds like excellent guidance for our listeners. So thank you. Absolutely. 
[00:25:51] Lynne: And, and our, you know, patient or the practice portal in ASHA is beginning to grow it's, you know, a number of topics that they deal with, where they have an excellent way to quickly assess current evidence.
[00:26:07] But we need more evidence. So that's another thing that I would say is our ethical obligation is to try and find ways to study what we do and to be consistent about what we to do what we do and use standard metrics so that we can understand better. You know what these outcomes are and what the evidence is and make sure that we're contributing in a way that's scientifically relevant and sound.
[00:26:31] Dr. McFarland: Great. Okay, let's move on and let's talk about another aspect of patient care. When a patient has a life limiting diagnosis, which may be the primary diagnosis, or in addition to a primary rehabilitation diagnosis, How does that affect establishing the goals of care for that patient or client? 
[00:26:58] Lynne: So that's a really excellent question.
[00:27:00] It's actually something that we've dealt with, and I, I've certainly seen in my entire career. And I think because in, Any kind of clinical practice setting that each 1 of us goes into, we become sort of immersed in understanding the natural flow of patient outcomes. And what happens to patients when we see them in that setting in an acute care setting, we see patients in very, very severe situations in.
[00:27:32] And inpatient rehabilitation, right after somebody has an acute event we see patients from a very, that very, again, that on set of very severe impairment to just getting home, maybe needing a lot of help. And then patients and outpatient come back and forth and they're more mobile, but we're always thinking that these individuals are on an upward trajectory and our interventions are helping to facilitate that.
[00:27:59] I think, you know, people know this anecdotally when they see a patient come back to them after they had been in their care who might be talking and might be eating a full meal and doesn't have their feeding tube anymore. It can be shocking because, you know, we, we see people in this very extreme situation.
[00:28:21] I think we always think of rehabilitation as moving a patient forward and and that patient getting better and not being cured. In some cases, some cases being cured, but at least being managed to improve. And as a matter of fact, that's what we're held to in terms of our goal development with patients is developing goals that are You know, certainly achievable based on what we know of their diagnosis and their severity and what interventions are available.
[00:28:52] And, you know, there are then patients who may be in our settings who have other life limiting diagnosis, as you mentioned. It could be cancer. For example, it could be a very severe neurodegenerative disease like ALS for example. And these kinds of situations can cause some tension especially in the context where that clinician or that group of clinicians, you know, 90 percent of the time or historically, or even that the regulatory requirements sort of, guide our treatment for patients who will be on the upward trajectory, getting home, making functional improvements, being able to show their changes.
[00:29:37] But we need to recognize that we play a tremendous role in the care of patients who may not, make functional improvements but we have to be very thoughtful about what the goals of care are for those individuals and be able to shift and take the medical information as it comes, ask good questions, and be able to help facilitate goals of care for a patient who may have a disease process that reveals itself more.
[00:30:10] As the patient is in a rehabilitation setting, maybe it was a new onset of neurological symptoms such as a seizure, brought a patient to the emergency room. They identified a mass that the patient didn't know about. Then they have a biopsy and the patient has increased functional impairment after the biopsy or after their, you know, continued progression.
[00:30:34] The patient comes to a rehabilitation hospital. The goals of. Which we believe are to help that patient manage their functional impairment and hopefully improve from that and go home. But there can be a lot of uncertainty about that for for a patient like this. And so it's important that our teams are able to Get together quickly and be able to help understand what that patient needs and what resources in our facilities can help the patient.
[00:31:09] So, being able to connect quickly with family members with other team members to understand, you know, how we are facilitating this, it may be to provide immediate education. So how can the patient and the family manage the patient's level of debility and functional impairment when there's uncertainty about whether or not that will improve.
[00:31:34] To work very closely with the medical team to try and understand as much as possible what the prognosis is for that. And one of our acute care oncologists here, I think said it best where he said you know, we may not know what the future holds, but right now we're going to help you manage what's happening right now and to help educate you for changes that are in the range of possibility.
[00:32:03] So we have that information. We have that knowledge from our training to be able to help patients manage. What they're facing right now and being able to make plans and steps for the future, but being in the moment with them and trying to be as, as hopeful and working towards as much independence as that patient can have.
[00:32:26] But to really think about what those goals of care are, and I understand this can sometimes be again, distressful in terms of being in a situation where people are concerned, should I be treating this patient? This patient isn't making functional improvement. Those things are certainly a concern and should involve you know, direct and team based discussions.
[00:32:48] About what, again, is best for that patient, given that patient's resources, given the patient's treatment trajectory, given the institutional goals, needs and abilities and limitations, and to be able to develop some plans so that you can anticipate, anticipate these issues in the future for these kinds of patients.
[00:33:11] So all of those, I think, fall within Our duty to take care of these patients and to avoid the temptation to just be frustrated and say, why is this patient here in my facility? I thought we were supposed to be working with people who could only continue to make improvements. We need to be able to provide you know, our excellence and service for people who need it because of their impairments.
[00:33:36] Dr. McFarland: You know, I think that's interesting because as you're speaking, I'm thinking about, you know, putting myself in the position of a patient or myself being a patient. And what you said about speed in planning and decision making. It seems to me a very, very important and also being in the moment. With that patient.
[00:33:59] I think that you know, myself as a patient, that's exactly what I would want and that is the speed and the recognition of let's do now what we can do now for this, for and with this patient, I think makes an awful lot of sense. 
[00:34:16] Lynne: Yes, and you, you know, you described sort of the continuum of rehabilitation, you know, from from the acute care setting through inpatient rehab, through the community outpatient care and home care And, you know, there is a continuum in something that actually intersperses which is palliative and hospice care and speech language pathologists have an incredible role in those circumstances and thinking about some of the goals for patients in, in those circumstances being very important in situations like this, when we know, or we believe, you know, through, through time limited trials of treatment that something may not be working.
[00:34:57] But what can we do to help that patient cope and manage their function given their current limitations, helping them sort of anticipate the change and reengaging in the system when that happens. But I think speech pathologists, you know, we sometimes say, well, a patient, you know, they're, they're at their baseline or I, you know, I can't make any change.
[00:35:19] We have a tremendous amount of knowledge that can be very supportive to these patients and can help their family members. So speech pathologist should be. You know, I think empowered to raise a red flag in their in their teams to, to have these conversations quickly, to make sure that we're doing our very best for the patient and to make sure that teams, the more teams communicate and get more information the more then institute or organizations can make decisions about these kinds of circumstances can reduce stress.
[00:35:52] I always say to our teams, you know, I, I, I haven't seen a solution yet that will eliminate distress because we deal with human conditions and we deal with challenges that are constantly changing but information and communication and, you know, as much planning as possible can help to eliminate that or reduce that.
[00:36:11] Dr. McFarland: I think I think that you're making some great points and, you know, one of the things that we as speech language pathologists have to do, I think, especially in, in these team settings is to let it be known you know, quickly and probably continuously what our contribution can be. And the fact that, you know, we really do have a contribution to make in terms of decision making and planning in these situations.
[00:36:38] Lynne: Absolutely. Absolutely. And I think we need to be thoughtful about how to articulate that. And, and absolutely. 
[00:36:47] Dr. McFarland: So, let's go on to something else. What about the idea of withholding or withdrawing treatment from a patient for whatever reason? There are certainly legal and ethical considerations for the treatment team, but there also must be a psychological perspective to consider.
[00:37:07] How do each of those perspectives square off against each other? 
[00:37:13] Lynne: So that's a really excellent question, Elise. And I think that this, this particular issue is not one that most of us face frequently. But this kind of thing can be the most challenging and the most distressing circumstance to manage I think of it most often for speech pathologists in the context of dysphagia and when a patient may require a alternative means of nutrition and hydration.
[00:37:44] Again, first starting always with our informed consent discussion, you know, after we've done you know, Efficacious evaluation of that patient and we may make a recommendation that the patient have alternative nutrition and hydration because of their aspiration risk. There may be circumstances where some patients or again, some surrogates on behalf of the patient may decide that they don't want to.
[00:38:13] start those alternative nutrition and hydration for whatever reason, because perhaps that patient has a life limiting illness and they've made the balance of benefit for themselves to say, I, I value eating. This is something that makes me happy. It's a social interaction. And to eliminate that may, you know, really reduce my ability to enjoy being around family gatherings and things like that.
[00:38:41] Or just feel like myself, feel like I'm going about my daily routine feel normal, quote unquote. And So that can be very distressing. I, and I think I'll say that when I first entered the field lo these, you know, quarter century ago dealing with or, or managing dysphagia for speech pathologists was relatively new.
[00:39:05] And this kind of question was uncharted. And there was concern that if a patient refused a life saving treatment Or a life sustaining treatment that you know, speech pathologist should not be involved to them in that situation. And I believe that we have a much better understanding of what our approaches and what our ethical duties are, you know, so it comes from making our beneficent recommendation that, you know, You, Mr, Mrs individual have a illness that is put you at very high risk for aspiration or very high risk of malnutrition or dehydration because of your impairments.
[00:39:48] This is the recommendation we would make. On, you know, to the physician in that case, and the patient refuses. We understand better that if that informed consent process has been vigorous and has been adequate that it is the patient's choice. In that situation. Hopefully again, as I mentioned in the beginning that we would be able to.
[00:40:11] help them understand, help alleviate fears, help clarify situations, and this kind of situation in particular might be very good for a time limited trial. You know, could use of alternative nutrition and hydration really increase you know, the goals that we have for this patient given the circumstances?
[00:40:31] Now, there's, there's, and again, we talk about evidence probably about 10 to 12 years ago there began, there, there were a series of, of articles looking at the difference between using tube feeding and using careful hand feeding for patients with advanced dementia. And that data showed that using tube feeding was not better, more beneficial than careful hand feeding.
[00:40:59] that people continue to have risk with that. It did not eliminate the the conditions of concern like malnutrition and wound healing and things like that. So we do need the evidence on that when we're making these recommendations to people. And so, you know, in the case of advanced dementia the evidence shows that a feeding tube does not necessarily extend life.
[00:41:22] In that situation, for example and can have some, some downsides. But in these other situations where, you know, it may appear, boy, this is a situation where a person could get over this hump and then have some more improvement that can be very distressing. But through You know, many years of considering this topic.
[00:41:42] The courts have said and ethicists have, you know, helped us all understand, again, our primary focus on patient autonomy. If the patient, again, has had full informed consent, that they have the right to make that decision. And we should then, as clinicians, Try to help support based on our fiduciary duty to share the information that we have.
[00:42:06] How can we help that person with their consent and their understanding of the risks? Manage their dysphagia with in the most safe way. So that sort of concern about withholding a life sustaining treatment. Now, I think that that concern is probably tripled, quadrupled, if it is. The decision to withdraw a life sustaining treatment.
[00:42:30] So somebody has been living with a feeding tube for a long time and that person has decided that the benefits and burden ratio for them is too great. And they want to withdraw that tube feeding. We see this as well with ventilators and, use of ventilators and now the legal system and ethical deliberation has determined that both the acts of withholding or withdrawing a treatment that's already established are equal.
[00:43:02] From a legal perspective and from an ethical perspective, based on patient autonomy choice and informed consent, but they run they're, they're much different from a psychological perspective. Many clinicians may feel that they have agency or that they're in part. You know, responsible for a patient's demise or illness if a treatment is withdrawn and it's important that we understand that it's that patient making the choice to allow the underlying The underlying condition that that inter intervention and that underlying condition condition is not something that he or she would want, or not this particular intervention, but we again should always try and help provide what we know to help mitigate the potential consequences for that.
[00:43:55] Dr. McFarland: You know, you're mentioning of the tube feeding is really interesting. I was at a meeting in Manila, the Philippines last year for the states speech and speech association and there was some research that was presented by 1 of the speech language pathologists in which they had done a survey of people who had experienced tube feeding.
[00:44:25] And they said that the the patient's biggest complaint was the fact that no one had ever asked them if they in fact wanted to be or would consent to be to fed and that that had greatly influenced their experience. Meeting, and I thought that was really interesting. It wasn't something that I had ever thought about before, but obviously was very important to the people that they surveyed.
[00:44:53] Lynne: And so, and you're saying this was a survey done for people who live in the Philippines. 
[00:44:59] Dr. McFarland: Yes. 
[00:45:00] Lynne: Yeah. And I think you're raising something that is also important for us to know, and that's the differences in ethical and moral perspective in different countries and different cultures. And.
[00:45:14] how it impacts or how it has influenced the medical systems in those cultures. I would say that it would be exceptionally rare and it would be a problem here in the United States if somebody were not informed and didn't give consent before they would have something like a feeding tube. But it may be more common in other places where there's a different a different, Weight placed on patient decision making more weight placed on family decision making.
[00:45:46] And, you know, it's for many, many reasons cultural history you know, the legal system itself that reflects the moral values of that society. And you see many, many differences that are both, you know, supportive of these things. For example, in Filipino society, there's much more support and ability for families to care for family members in the home you know, if they're ill and elderly.
[00:46:17] There may be, in some Asian cultures, less value placed on truth telling to a patient because the concern is that that is harmful to that individual, that they, that knowing the truth about a very serious or life limiting illness would be cruel. To that individual and that the family should absorb that tremendous sadness and burden and help support the patient.
[00:46:45] So there's lots of differences in cultural what we call sort of ethics and cultural care, excuse me. And it's important that we recognize that there are differences and we try to understand them, especially for working with. Patients from those cultures but not to assume that just because a patient comes to us with a different cultural background that he or she will automatically ascribe to those values or, or those principles or processes.
[00:47:13] There's a good way that we can ask that question and find that out from patients you know, without the Presence of family members who may be, you know, continuing to try and support patients and what they believe to be the best, which may be a different cultural perspective and approach different from informed consent and patient autonomy.
[00:47:35] We could say to that person, if they have decision making capacity, you know, Mrs. Jones, how do you want us to manage information about your care? Do you want us to communicate directly with you about decisions? We see that your family members are here. Is there any family member that you want to be involved in these decisions?
[00:48:00] And the patient may say, no, talk to me, or they may very clearly say, no, my, my son. Makes decisions for me. So there is a way to verify that in the context of treating a patient from a different culture in a culture where autonomy is highly valued. 
[00:48:18] Dr. McFarland: Thank you so much for that. I have one last question and it's about something that I know that you've been very directly involved in and that is decision making about care and resources during this coronavirus COVID 19 pandemic.
[00:48:40] I'll call it. So, we are forecasting now the medical experts are now forecasting that there will be thousands of people perhaps in the United States who will be diagnosed. There will be obviously a real need for medical facilities for people to be cared for in medical facilities, for there to be many different types of medical resources and health care resources that will be available.
[00:49:09] What about managing a scarcity of resources during this coronavirus episode that, that we, and many others across the world are experiencing? 
[00:49:22] Lynne: Yeah. Oh, such a good question. And I just want to say that I hope that. You know, you and your listeners all are able to stay safe and, and healthy. And I think that, you know, this is an unprecedented time though.
[00:49:37] In the past, well, in the past many, many years, but certainly since 9 11 many local healthcare and community. Community resources have been attempting to do planning for situations where resources would be incredibly constrained or where the need for new things like, like tests for coronavirus, for example.
[00:50:01] Because they're limited right now at the moment of, of our recording Elise very in very short supply. They, you know, communities hospitals are trying to figure out ways to make sure that they're used, you know, as well as possible for identifying positive cases. And when we think about the need to you know, Manage scarce resources.
[00:50:25] We want to make sure that we're doing this in an ethical way. And you know, emergency response teams in general emergency departments hospital triage you know, treat military triage has had a history of this in trying to determine the best way to use resources and how we're going to manage when people are very, very sick in a very sudden.
[00:50:49] Search. But it's something that all clinicians have a duty to do to think about the resources that they manage. You know, it's people may say to themselves, you know, we, we have an abundance. We shouldn't think about having to limit anybody from receiving anything. But in fact, that is Unsound and we want to be able to, you know, we have a duty.
[00:51:15] It's it's not only okay to limit resources and certain circumstances. It is ethically appropriate and mandatory to do so. So we have to plan for that and think about how we would make those decisions. And when I teach I, you know, often refer back to historical circumstances where these kinds of, of choices needed to be made, made.
[00:51:40] There was one circumstance in World War I where there was a limitation of penicillin, World War I or World War II, limitation of penicillin, and many, many injuries on the battlefield. And the decision was not made to give the penicillin to individuals with severe wounds and infection, but to give it to the soldiers who came back from venereal disease.
[00:52:09] And the reason for that was to treat people who could go back to the fight, who would then provide the best chance for everybody to, to win. So, When we think about what we call in ethics distributive justice there are many different ways we could think about how we would limit or how we would give resources.
[00:52:32] And many of those ways are acceptable. So it could be, you know, first come, first serve. It could be random. So you would like select through a lottery. It could be the greatest medical value. of that treatment, so the greatest efficacy of that treatment. In some cultures, it could be treating people who have the greatest social value in that country.
[00:52:56] So would you treat a a parent before treating a child? You know, sort of the concept of the mask falls from the ceiling. Please put it on yourself first before you help somebody else. So there are many different ideas about Social justice that are there, but each organization and this can extend to town community state should work together to make sure that these decisions are being made in a transparent way.
[00:53:26] Discussing this with all the stakeholders who can have input and then making sure that the decisions that are made are communicated broadly and effectively so that anybody meeting, you know, these circumstances would make the same decision. So that's where justice and fairness come in. Let's draw this back dramatically to a Department of Speech Language pathologist.
[00:53:54] What if somebody in a department of 5 became infected and needed to stay home and the rest of the speech pathologists were not able to treat all of the patients in that hospital that were on program that team would need to get together and to determine in a situation like that. How would you triage?
[00:54:18] The treatments that were required for those patients, and it would need to, you would need to consider many things. You would need to consider the medical need for that particular patient. You would need to consider even, you know, patient anxiety around need to continue a program you might together develop home programs and exercises and things to help facilitate.
[00:54:42] You may even need to consider that patient's reimbursement. NAHCS Patients and their insurance reimbursement how, you know, how does that play into a decision. But again, sort of in that microcosm coming together, making sure all stakeholders are involved in those decisions, supervisors, managers, other clinicians to get the best information possible.
[00:55:05] And then have a plan that can be followed with as much consistency as possible. So we have a duty to do that and important most important to vet it with as many stakeholders as possible. And then also to make sure that we switch when there's new information that comes in. If we need to switch.
[00:55:26] So, you know, we're seeing that now on, on a very large level because of this pandemic. And we also want to think about that in our, in our own teams and with our own resources and how we're going to manage that for this situation and going forward so that we can be flexible to meet that demand ethically.
[00:55:48] Dr. McFarland: Excellent, excellent, excellent information and certainly a lot for us to think about. Well, I want to thank you so very much, Lynne. I know our listeners have benefited from your, your information about ethics in rehabilitation planning and care, as well as your experience as the speech language pathologist and someone who has expert knowledge about the ethics of healthcare.
[00:56:13] I want to thank you so much for being with me on this interview. Because ethics is essential. Thank you. 
[00:56:22] Lynne: Thank you, Elise. It's my great pleasure. 
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