Everyday Ethics: Practical Tools for Navigating Ethical Dilemmas

Editor's Note: This text is a transcript of the course, Everyday Ethics:  Practical Tools for Navigating Ethical Dilemmas, presented by Angela Mansolillo, MS, CCC-SLP, BCS-S.

Learning Outcomes

After this course, participants will be able to: 

• Describe ethical and legal principles as they apply to clinical situations
• Implement a framework for ethical decision-making in clinical practice
• Discuss and apply ethical principles into practice via case review

Ethical (and Moral) Principles

I want to start by reviewing some ethical principles and talking about what they mean functionally.  I will also discuss ethical assessment and managing ethical dilemmas, and use case reviews throughout the next hour to illustrate these concepts. Generally, the terms "moral principles" and "ethical principles" are often used interchangeably, and there's a great deal of overlap. The term "moral" has some religious connotations that the word ethical or ethics doesn't carry with it. But these are generally agreed-upon principles within a community and across communities.

• We strive to do what's best for other people
• We try to avoid harm to other people
• We act in a way that's fair and just
• We protect other people's freedom and right to make choices
• W are accurate and as truthful as possible in all of our interactions

These are not just clinical practice ethics. Again, these are generally agreed upon within and across communities.

Our Ethical Obligations

ASHA Code of Ethics Core Principles

The American Speech and Hearing Association has developed a code of ethics, and there are a lot of rules and guidelines within that code. The code is organized under four guiding principles:

• Our responsibility to persons served professionally
• Our responsibility for our own professional competence
• Our responsibility to the public
• Our responsibility in inter and intra-professional relationships

The first principle is about our responsibilities to our patients and our clients. Principle II addresses our responsibility for our own professional competence.  We have an obligation to continually review our own competence to ensure that we are maintaining that and ensuring that we are not working outside of that competence. The third core principle of the ASHA code involves our responsibility to the public. In other words, we need to be truthful in all of our interactions in the way we respond and interact with the public as we are representatives of our profession. And finally, the fourth principle in the code oversees our interrelationships within the profession, with other speech pathologists and audiologists, as well as our interactions with other professionals in our work sites.

Types of Ethics

There are several different types of ethics described by Jennifer Horner (2003). Normative ethics are the broad category of what should be done in a given situation. These are "in-life" ethics, not specific to any setting or profession. Descriptive ethics is the study of the application of principles. Then there are professional ethics that apply to a very specific group of professionals, in our case, speech-language pathologists. The goal of professional ethics is always to protect the people we serve within that profession.

Related to that is a set of clinical ethics that are the principles we use when we find ourselves in complicated clinical situations. Often in our clinical practice, we find ourselves in those situations. The goal of clinical ethics is to guide us as clinicians to ensure that what we are doing and the decisions that we're making are in the best interests of our clients while, at the same time, respecting their rights to dignity and autonomy. This is often a place where dilemmas arise because sometimes there is a conflict between doing what we think is in the best interest of our clients and what our clients are choosing to do autonomously.

Public health ethics are broader population-based health and safety regulations. We all got a close-up view of public health ethics over the last few years as we found ourselves in the middle of a global pandemic. Questions arose, such as, "What is the best way to rule out a vaccine?" "What is the best way to ensure that people are safe?" Issues of masking and quarantine are health and science issues, but they are also ethical issues. And the obligation is to act for the public good. The conflict is that what is thought to be for the public good is not always clear, as we found out.

Finally, research ethics are in place to protect subjects of research, human subjects and/or animal subjects. This is an interesting discussion on its own, and we're not going to touch on that in this course. 

Legal Principles

In addition to ethical principles, we must consider what the law tells us. There is an overlap between ethical and legal principles, but they're not exactly the same. Legal principles are rules that have been established in the law. While ethical principles tell us what we should do, legal principles tell us what we must do, and what we are obligated to do by law.

There are different types of law. Statutory laws are laws that have been passed by congressional bodies, state legislatures, and federal legislatures, and are in the actual statutes.

There is also administrative law. There may be a statutory law, for example, that gives the Department of Public Health in your state the right to do certain things. When the Department of Public Health performs those things allowed by statutory law, that is considered administrative law. The administration, the Department of Public Health, is acting in a certain way and setting out rules and guidelines.

Case law is a law that has been established in the courts as a result of the decisions that judges and juries have made in courtrooms, and constitutional law is just what it sounds like, a law that our United States constitution has established.

Ethical Principles

I want to take some time to define some ethical principles and describe what they mean in our everyday clinical practice. Then I want to talk about what the legal principles are and the specific legal rules that coincide with these ethical principles. Let's start with two ethical principles that go hand-in-hand, beneficence and non-maleficence.

Beneficence is the ethical responsibility to always do what is in the best interest of our clients. Non-maleficence is our obligation to do no harm. When it is unclear what might be in the best interest of our clients, at the very least, we can be sure that we do no harm. Both of these principles require us to think about the consequences of our actions, the consequences of our treatment plans, and the consequences of our treatment recommendations.

These principles seem pretty straightforward. How hard is it to do no harm or to do what's in the best interest of your clients? These seem like fairly easy, straightforward things to do, but things do get in our way every day regarding clinical practice and what is in the best interest of our clients. Sometimes there is a lack of evidence to tell us that our treatment plan is the best from an evidence-based perspective. We may not have enough evidence to know that for sure.  Unfortunately, every day, clinicians face shortages of resources, personnel, materials, and equipment which can get in our way as we try to do what is in the best interest of our clients. There may be language or cultural differences between us and our clients that get in our way. 

There is also the issue of competence. We are obligated to maintain our clinical competence in the areas in which we practice.  That becomes very challenging as the scope of practice in speech-language pathology continues to expand, and we are asked to do things or to see patients when we have not developed the clinical competence that we need.

There are some legal principles that fit with these ethical principles. Clinical malpractice, or medical malpractice, is the idea that our clients potentially have some legal recourse if they do not get the outcome that they had been promised or had expected. Again, that issue of competence would come into play. Were we acting in the best interest of our clients?

The issue of negligence is a legal concept that clients and families might have some recourse if they felt like a treatment plan was lacking in some way. Additionally, we have our standards of care that are set out by our national organization, the American Speech and Hearing Association. Our standards of care are not law, but at a state level, our clinical practice acts and our licensing acts are set out in law, and there are standards of care that have been legally established. They differ from state to state, but they are legal standards that we have to be aware of and adhere to.

Moving on to the ethical principle of autonomy. This is the idea that each patient or their surrogate decision maker, whoever's making the decision for that patient, has the right to make autonomous decisions (i.e., to make their own decisions) about their care, about what treatments they will participate in and won't participate in, and what assessments they will participate in. And every patient has a right to have either themselves or their surrogate decision maker be actively involved in the decision-making.

Related to that are informed consent and refusal. Under this ethical principle, our clients have the ethical right, which is a legal right as well, to have the information they need to make autonomous decisions. And one of our biggest responsibilities is to make sure that our clients and their family members, or whoever the decision-makers happen to be, have the information that they need. It is not my ethical responsibility to ensure that my client does what I think he or she should do. It is my responsibility to make sure that whatever decision my client makes, they are making from a place of information; that they have the information that they need to make that decision going forward. That means talking about the risks and benefits.  We do a pretty good job of this when patients are not wanting to follow a recommendation. We do a good job of telling them why they should and what the benefits of following our recommendation would be and what the risks would be if they don't. We're not always as vigilant when people agree with us. When people say, "Okay, I'll try that thick liquid for a while," are we as vigilant about saying, "Yes, so here's why I'm recommending it. Here are the benefits of it. But also, here are the risks if you do this, and there are some risks." We have to make sure that we are as vigilant about talking about risks when people are in agreement with us as we are when they are not in agreement with us. 

Some potential barriers to autonomy and informed consent/refusal include cultural differences, communication deficits, and health literacy (i.e., a person's ability to understand health-related information). Another barrier is lacking self-advocacy skills. Families may not know how to navigate the educational system or healthcare system. For example, parents can be overwhelmed by the IEP process, or family members may struggle with finding the ICU in the building, let alone understanding what people are saying with all the jargon and information coming at them. It's hard to be a good self-advocate in a situation like that. 

From a legal sense, competency or capacity is a legal judgment. Does the person making the decision have the capacity to make that decision cognitively and linguistically? Do they have the ability to understand the information and make and communicate an informed decision? Again, that is a legal judgment.  The right to consent and refuse is not only an ethical principle but also legally protected.

Levels of Consent

There are different levels of consent, the first being formal consent. Patients who are undergoing surgical procedures or diagnostic procedures in some facilities sign a written document outlining that someone has reviewed the risks and benefits of the procedure or the surgery with them and that they consent to the treatment. That is part of our practice, but it's not something we do with every patient every time we encounter them. We're not using formal consent that frequently.

More commonly, perhaps, is verbal consent, where we have conversations with patients and say, "It probably would be a good idea to think about a swallow study. Here's why we're thinking that would be a good idea. What do you think?" The patient might say, "Well, what does it entail?" Then, we discuss what it entails and why we want to do it. The patient then consents and we document that conversation in our note.

Perhaps even more frequent than that is assent, and this is consent that we use in our daily clinical care, particularly patients we're seeing repeatedly. We don't go through an entire verbal or formal consent process every time we see them for an additional treatment visit. Consent is implied by their coming to the clinic and scheduling their visit. So, it's an informal agreement that, yes, the patient agrees to participate in this visit or in what is about to occur in this session.

When discussing consent, we also have to think about refusal.  The right to refuse care is very well established, both ethically and legally, for individuals and their surrogate decision-makers. The person making that decision has the legal and ethical right to refuse care. There are ways to formalize this process through advanced directives and healthcare proxies and living wills. But if that process has not been formalized, if there is no advanced directive, no proxy, and the individual's wishes are not known, the physician has a legally established right to make determinations about withholding or withdrawing care under certain circumstances.

Although we have a very well-established right to refuse care, that right to refuse care is not always honored, and there are several things that can get in the way. People are not always able to communicate that they want to refuse care in certain issues; perhaps it's a cognitive communication issue or a capacity issue. There are times when a decision is not honored because the science is complicated. There are lots of medical controversies. Vaccines, use of medical marijuana, and end-of-life treatments can become very complicated for people. It may be that the person's right to refuse is not honored because no one understood that's what the patient would have wanted or the conversation was never had. Sometimes, even if there is a conversation, surrogate decision-makers still make decisions differently than the patient would have wanted.

Those of us who work with adult patients, particularly in end-of-life situations, have encountered family members who say, "You know what, my father probably wouldn't have wanted this, but I can't say no." So, that's a difficult decision for family members to make, and all of that emotion is one of the things that certainly gets in the way.

CMS Regulations

The right to accept or refuse treatment is well established in the Medicare guidelines, which is important for those working in skilled nursing. Medicare or CMS regulations state, "If a resident either directly or through an advanced directive would like to decline treatment (even if that means adverse outcomes), then that resident may not be treated against his or her wishes." There are rules that the facility must follow.

The facility must:

• Re-assess resident and modify care plan as appropriate
• Assess for decision-making capacity
• Determine and document what the resident is refusing, assess reasons for refusal, advise re: consequences of refusal, offer alternatives
• Continue to provide all other appropriate services

This doesn't always happen consistently, but there is legal recourse when patients or family members do want to refuse treatment of any kind. We think about cognitive-communication therapy and swallow therapy, but those guidelines cross all types of interventions.

Often when patients want to refuse, particularly in skilled nurses facilities, the facility offers a waiver to be signed to absolve them of any responsibility. "Sign this waiver, and you can refuse to follow this recommendation or refuse this treatment or refuse this test."  However, in a court of law, those waivers are not enforceable. From a legal perspective, having a patient sign a waiver is very one-sided. The waiver essentially asks the patient or the family member, whoever's signing, to give up their right to sue the facility in exchange for something they already had, which was their right to autonomous decision-making. So the court finds waivers unenforceable for that reason; they're unfair. Essentially the patient has been asked to give up their right to any recourse in exchange for something the facility had no right to give them because they already had it, their right to refuse.

Surrogate Decision Makers

I want to discuss surrogate decision makers in more detail because often, in our practice, the patient is not the person making the decision. For those of us working with pediatric clients, the child is not making the decision, parents are defacto decision makers. When we're talking about an adult deciding for another adult, however, the legal principle that comes into play is the idea of substituted judgment. In other words, a surrogate decision maker, an adult for another adult, is being asked to make a decision based on their best understanding of how the patient would've decided for themself. In other words, if my parent is in the hospital and unable to communicate and I, as the oldest daughter, am the surrogate decision maker, I'm not expected to make the decision that I would make for myself. I'm expected to make the decision that my parent would make if they were able to. And that's very difficult if you haven't talked about it. If no one knows if those wishes have been communicated beforehand, it is very difficult to guess what this person would do. If we don't know what that person would do if they could have made the decision themselves, then the next thing to do is to act in that patient's best interest. So, if the wishes of this individual are truly unknown, then the surrogate is required to do whatever is in the best interest of that person. Again, with pediatric clients, this idea of substituted judgment does not apply because parents are simply the defacto decision makers.

Ethical Principles - Continued

Let's move on to some other ethical principles and their legal cohorts. We are required to honor the principle of justice in all of our interactions, providing our clients with equal and fair access to our resources. Our resources are the therapeutic care that we provide, our own time, our expertise, and our education. We are required to be truthful and honest. That is the principle of veracity. We are required to be fair as we distribute our resources and not discriminate, which is the principle of non-discrimination.

What often gets in the way of these principles is a lack of resources. It's hard to distribute resources equally and fairly when there just aren't enough or when your caseload is very high. Another barrier is over-treatment. We may see patients longer than they need to be, or we may have difficulty discharging them. When we do that, we're limiting other people's access to our expertise and our services.

Related to legal principles are things like the duty to disclose. In other words, we are legally obligated to provide truthful information to our clients. That's an ethical and legal principle and fiduciary responsibility. We have a legal obligation to follow all insurance rules and regulations. They are often examples of administrative law.

Dignity is an ethical principle that involves some of the things I've already talked about, and that is the right to information when making choices, the right to autonomy, and the right to participate in decision-making. Additionally, it includes the right to privacy and a right to confidentiality.

Barriers to these principles include high caseload demands, lack of practitioner competence, language differences, and cultural differences. In terms of privacy and confidentiality, social media can be a challenge. As professionals, we must be very careful with social media and ensure we are not talking about or identifying patients. There are also larger privacy breaches and technological issues that might get in the way of a person's right to privacy and confidentiality.

Competence is a principle I've mentioned already. We are obligated to complete ongoing assessments of our own knowledge, skills, and qualifications. The scope of practice in speech-language pathology is large and getting larger all the time. Therefore, we must constantly assess what I know how to do. What am I competent in? Just as importantly, what is it that I'm not competent in and should not be doing?

Again, caseload demands and lack of resources are barriers to this principle. Less commonly, an impaired practitioner might be performing in a way that is demonstrating a lack of competence.

We are also obligated to avoid conflicts of interest, either actual or perceived. In other words, avoid situations that create a conflict between our personal private interests and our professional interests. 

We also have an obligation to avoid misrepresentation, obviously to avoid any fraud or misrepresentation in our documentation, in our billing, and in our clinical practice. One potential barrier to misrepresentation is a lack of awareness of what the billing rules and documentation rules are. Sometimes there's a lack of clarity, but we must be careful about conflicts of interest, whether they are actual or just might be perceived as a conflict.

Patient Responsibilities

Our patients have responsibilities as well. We must do what is in the best interest of our clients, but the patient or the client has to also determine what that looks like. What is quality of life for them? What quality of life is acceptable and desirable for them, maybe different from what I would perceive as quality of life for me.

Patients have the responsibility to stay informed about their health issues, to participate in the decision-making, and not just abdicate decision-making to clinicians or physicians.

Patients are also responsible for communicating their wishes to anybody in a position to have to make a decision. Remember that substituted judgment for surrogate decision makers. I can't make a substituted judgment for my parents, for example, if we've never had a conversation about what they might want. As individuals, we have a responsibility to make sure that the people who are potentially our surrogate decision-makers know what our decisions would be.

Ethical Dilemmas

An ethical dilemma occurs when there's a conflict, when there's more than one potential solution to a problem, or when there's uncertainty. In other words, taking a particular action could be described as being ethically correct and ethically incorrect simultaneously. And that is likely to happen when there's stress in a system, such as family stress or institutional stress. Family conflicts or difficult family relationships make it difficult for families to come together to make decisions. Financial pressures, caseload demands, and staffing shortages are going to make it difficult for clinicians and institutions to behave in ethically appropriate ways.  We are all aware that global pandemics put a great deal of stress on the system, and I will talk about some pandemic ethical issues in just a moment.

Ethical decision-making is about balance. Sometimes, it's about balancing medical issues with what the patient wants. It's balancing what we know about this person's medical condition, their diagnosis, their prognosis, and the options that are available to them for treatment with what the patient wants. And what the patient wants is going to be influenced by their cultural values, their religious beliefs, and their ability to make and communicate that decision in any advanced directives that they might have. Those are the factors that are often in balance.

Also, we are often in situations where we are balancing quality of life within the context that the decision is being made.  Quality of life is a self-assessment. However, we also have to think about quality of life for the caregiver. What is the burden on the caregivers if we decide a certain way? We have to put that in the context of economic demands, legal issues, and available resources.

There is a very interesting article about humility (https://ethicalleadership.nd.edu/news/leader-moral-humility-ethical-leaders-should-be-humbleespecially-about-their-own-ethics). To assess your own ethical code and to make sense of ethical dilemmas, the author argues that you have to have some degree of ethical humility. In other words, you need to be doing an ongoing assessment of your own values, your own ethical insights, appreciate the strengths and the behaviors of the people around you, who may not necessarily agree with you or may not share your value system, and be willing to learn from people who have different value systems than your own. And, of course, be willing to admit that you might have made a mistake.

Ethical Analysis

If you find yourself in an ethical dilemma, there are some things that you can do as part of an ethical analysis. What do we know about the case? What are actual facts? This is not what are people's feelings about it, but what are the actual facts? Are there laws that we have to take into account or institutional policies that come into play? Where is the conflict? What values are in conflict, and which values should then be prioritized? And ultimately, which action would benefit the patient?

Is there a principle that appears to have been violated? In what way was it violated? It's helpful to talk out each potential course of action, "We could do this, we could do this, or we could do this." Think about each course of action, who could potentially benefit, and who would potentially be harmed. If we play out each scenario in a group, that can help us come to some conclusion about the dilemma.

Case Study 1 - Informed Consent/Right to Refuse

This is a situation that I found myself in not too long ago. The client is a 31-month-old male with a very complex medical history. Esophageal atresia that was repaired at birth, an unrepaired small laryngeal clef, multiple hospitalizations, bronchopulmonary dysplasia for RSV, and also has hearing loss. He is receiving early intervention services, and I had been treating this client and continue to see this client in our outpatient clinic for feeding and swallowing issues. His oral intake was problematic from the beginning. We had a lot of ups and downs in terms of volume, which was often limited by the child's lack of endurance and increased work of breathing.

When this dilemma occurred, the patient had been hospitalized with an upper respiratory infection. While he was in the hospital, his oral intake tanked. As I said, it had not been great, to begin with. We hoped he was getting enough every day, but it was terrible in the hospital. The hospital medical team, in consultation with the child's pediatrician and gastroenterologist, had also been following the child and were recommending a G-tube. The mom and dad said, "No, we don't want to do that." The pediatrician called me and said, "I know you have a good relationship with this family. I'm hoping that you can help to persuade them that he needs a G-tube."  The mom called me immediately after I get off the phone with the pediatrician. She was crying and saying, "They're going to force us to put a G-tube in him."

So now I am in the middle of this dilemma. What do we have to think about? What's in conflict? Everybody believes that they are acting in the best interest of this child. The pediatrician, the medical team, and the gastroenterologist believe that the G-tube is in the best interest of the child, but the parents do not. They believe that continuing oral feeding is in the best interest of the child for many reasons. Not only does he have a complex medical history, but he has had many surgeries, he has several surgeries coming up, and they were reluctant to put him through additional surgery.

Informed Consent

In this situation, the best interest of the child is what is in conflict. The parents have the right to an autonomous decision. My role, as I saw it at the time, was to make sure not to influence the parents' decision but to make sure that whatever decision they made, they were making it from a place of information. So I helped them have a conversation with the gastroenterologist and the medical team about the risks and benefits of oral feeding and the G-tube.

Health Literacy

There were also some health literacy issues, even though this child had this complex medical history and had been through multiple hospitalizations. This was not a couple that had a lot of skill in navigating the healthcare system and therefore didn't necessarily have all of the information they needed to go forward and make this decision.

As we think about the decision these parents had to make, my obligation was to make sure that they understood the decision, that they were able to make a choice, that the choice was firm, and that it was a stable decision. Not that they were changing their mind about it. And in the case of parents, because we had two people making the decision, we wanted to be sure that they were in agreement about the decision and that they understood the consequences of it.

It was not my responsibility to persuade them to do what the pediatrician wanted them to do. My role was to make sure that they could make an informed decision. That means we spent time talking about their options and spent time talking about the risks and benefits of both paths of action. I was able to take some of the health information and modify it so that it was easier for them to understand and help them identify some questions that they needed to ask the medical team. What didn't come up in this case, but may come up in your cases, is that it's okay to come back to that decision and say, "How are you feeling about this decision? It's okay to change your mind down the road." Allow them to revisit that decision.

As I said, health literacy was an issue for these parents. And the definition of health literacy is the degree to which people can access, understand, appraise, and communicate information in a health context. It's dependent upon general literacy but also different from general literacy. It's very much context-dependent and specific to healthcare information in the middle of a stressful situation.

Depending on the study cited, a number of people in this country are described as having poor health literacy, and low health literacy is associated with poor health. They are unable to navigate the health system effectively. People with lower health literacy tend to have inaccurate information. They don't get information from informed sources.

Is there a relationship between health literacy and adherence? It depends. When people have high levels of health literacy, there doesn't seem to be a relationship to adherence. In other words, when people with lower health literacy fail to adhere, it's often related to their lack of health literacy. But when people with higher health literacy fail to adhere it is usually for other reasons, not a lack of health literacy. It's usually a more deliberate choice.

Health Literacy and Interventions

We must consider the written materials we provide to patients and families and have some alternatives to that written information, maybe with videos or PowerPoints.  This is not a well-studied area. However, we're seeing more researchers paying attention to health literacy. The literature does suggest that mixed interventions, such as written, verbal, video, and visual, do help people have higher levels of health literacy.

Other suggestions for increasing health literacy include adding video to verbal information and presenting essential information by itself or first so that we know people are getting what they need. We can also provide information that is easier to understand, that has been simplified, and that has been prioritized. There are links to tools in the public domain here:

• https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/index.html
• https://www.cdc.gov/healthliteracy/index.html
• https://www.teachbacktraining.org/

These are government resources and tools that might be helpful for your clients or family members of clients to improve their health literacy.

Case Study 2 - Pandemic Ethics

The global pandemic created many ethical issues for us in healthcare and education. Ethics around telepractice, the issue of client abandonment versus our own personal safety and the safety of our families, and the risk to us as practitioners. Ethics around mask protocols and vaccine protocols, et cetera. This next case is a patient who was recently extubated after spending 17 days on a vent with an ET tube. In the early days of the pandemic, long periods of intubation were not uncommon. We're seeing it less frequently now, but long intubation periods were not uncommon because the medical team was reluctant to transition to a trach tube due to the risks to practitioners.  This case is during the early days of the pandemic when caseloads were very high, staffing was very low, and PPE was scarce. There were a lot of limitations.

What are the Ethical Issues

What are some of the ethical issues that come into play here? There's this issue of beneficence and non-maleficence, as well as doing what is in the best interest of the patient. But there is also the question of what our obligation is to our own safety and the safety of our family members.  We're being told if we had an exposure, we needed to quarantine. If we see that patient, we are exposing ourselves. If we don't see that patient, would that be considered client abandonment?

We had to also consider competency. Again, this was a brand new disease we knew very little about. We were flying by the seat of our pants for a while in terms of understanding what their swallow was going to look like, what was going to work, and what we needed to pay attention to. We were using the information we had about other patients who had long periods of intubation and other patients who had other acute respiratory distress syndromes. Much of that information did apply, but we didn't know much about COVID at the time. So nobody had many competencies to offer.

ASHA's Code of Ethics states, "No clinician is ever ethically required to work in physical danger in order to offer client care." Is that the situation? Was going into a room with a patient who was positive for COVID a physical danger to me? That was something we had to think about. But at the same time, here's the dilemma, we also have the ethical responsibility "to hold paramount the welfare of the persons we serve professionally." The patient in that bed is my primary responsibility. Ultimately, we had to ask ourselves, "What is in our patient's best interest?" And different practitioners in different facilities made different decisions about that. 

In some facilities, they limited the exposure to a larger group of people by creating a team of SLPs who would treat the COVID patient. Others had COVID units, so COVID patients were not spread throughout the facility.  Other facilities had COVID patients spread throughout to spread the burden of care among staff members. Are there practitioners who should get some special consideration in these situations?

Fortunately, I was, and still am, a healthy person and not at risk, other than the general risk to the population at that time if I went into the room and treated that patient. But if we had an SLP who was pregnant, immune compromised, or older, that might have been a physical danger. In fact, the CDC stated that people in those special categories (i.e., healthcare workers) would not be guilty of client abandonment if they determined that the physical danger to themselves by going into that room and treating that COVID patient would be too high.

We also have to think about that patient. What did they need? We must ensure that the clinician who goes into the patient's room is competent to meet their needs. Is it a pediatric client or an adult client? If this is someone who's just been extubated, the SLP must know how to evaluate and treat those patients. Again different facilities made different decisions. We had to make sure that there was transparency about how that disease process was happening.

Promoting Resilience

Working during a pandemic, particularly at its height, created a lot of conversation and a lot of research around this idea of resiliency, being able to withstand and quickly recover from difficult situations. There was some research promoting resiliency pre-pandemic, and much of the message is the same. Think about your own ethical code and why you feel like you're in an ethical dilemma. Talk to people about it, and ask for help or support from your team. Try to find some meaning in what you are doing because ethical practice is to do good when moral distress is inevitable in healthcare and education. It's important to think about ethics, talk about ethics, and educate yourself about ethics. 

But what happens when the pandemic seemed like it was never going to end? What happens to your resiliency when you're being asked to do the same, to take those same risks over and over again? Two authors, Bell and Breslin, describe ways to promote resiliency within a team. They suggest recognizing that you have this moral distress and are living in this ethical dilemma daily. You should talk about it with your coworkers, articulate your goals together, and as a group, maintain your focus on the good that you are doing, even if it doesn't feel that way.

It's also important for our administrators to provide us with access to resources on decision-making and help with decision-making so that we don't have to resolve these ethical dilemmas on our own. Some facilities have teams that review ethical dilemmas. We can certainly do it within our own departments, we do case debriefings, et cetera, and identify what we're experiencing. It can be difficult to differentiate between burnout, a true ethical dilemma, and true moral distress. But, there is a resource to help you to do an individual assessment to determine if it is an ethical dilemma (https://www.aacn.org/~/media/aacn-website/clincial-resources/moral-distress/recognizing-addressing-moral-distress-quick-reference-guide.pdf). And if it is, then what can I do about it? What are the paths forward?

Case 3 - Conflicts of Interest

I want to finish by discussing the various types of conflicts of interest. There are four potential conflicts of interest in the following scenarios: 

• Developers of an AAC app offer you a volume discount for every app you sell to a client
• A client you’ve been seeing in the hospital clinic offers to pay you privately for therapy once his insurance benefit has been exhausted
• You collect a bagful of convention “swag” in the exhibit hall of the ASHA convention
• A continuing education event is sponsored by a company that sells thickening products for patients with dysphagia

Think about each scenario and decide if there is a conflict of interest. Ask yourself, do I feel comfortable about this relationship? Would I feel comfortable if people or my clients knew about this relationship? Who is benefiting from this relationship? Is it me, or is it my client? Is it both? Is there some attempt to obligate me in some way to use a certain product or recommend a certain product?

In the first scenario, you're working with clients with augmentative communication needs, and the developers of an app offer you a volume discount for every app you sell to the client. Is there a conflict of interest? There could be. This is going to require you to examine your practice patterns and make sure that you are recommending the app because it is the best app for this client, not because of your relationship with the developers of the app or because of the volume discount. It's also important to think about who's benefiting. Is the client paying less because you've recommended this app more? Are you recommending the app because it will cost them less or because it really is the best app for this person? Are you receiving some sort of kickback by recommending this app, in which case there's a very clear conflict of interest?

In the second case, the client has offered to pay you privately for therapy because the insurance benefit has been exhausted. Is there a conflict of interest? Probably yes. You have to ask yourself, "What is the potential for improvement? Am I taking this client on privately because it benefits me and they're offering to pay me, or is there room for improvement?"  That's an important question to ask yourself and answer very honestly.

In the third scenario, you went to the ASHA convention and got a bag full of convention swag. Is there a conflict of interest here? Possibly but probably not. The monetary value of all of these gifts is generally pretty low. And it's unclear whether these gifts are going to have an impact on your practice patterns. Are you going to recommend this particular product because they gave you a pen or some post-its? Probably not. But again, you have to ask yourself, are you being influenced by the fact that there was this gift? We always have to be vigilant about these kinds of things.

In the fourth scenario, you've attended a continuing education event sponsored by a product. Is there a conflict of interest here? Potentially. Again, we always have to be vigilant about our practice patterns. Are you going to recommend that product because they sponsored the event that you attended? Probably not. But they could potentially be in the front of your mind. Again, we have to be vigilant about that, make sure that we do our due diligence, and look at all the other options for potential products for our client and make a professional decision. It's not like when you go into a car dealership, and the salesperson comes up and says, "Oh, I have the perfect car for you." You know he's full crap. But when the SLP says, "I have the perfect AAC app for you," or "I have the perfect thickening product for you," or "I have the perfect spoon for you to use with your child with feeding disorders," that carries a lot more weight. Our clients expect that that is going to be the best option, and so we have to keep that in mind.

As we finish up, I want to remind you that ethical dilemmas are more likely to occur when there's stress in the system, and there's always stress in the system. Staffing shortages, lack of resources, global pandemics - this is the world we're living in. And a true ethical practice takes more than just adherence to a set of rules and principles. It requires evaluating ourselves in an ongoing way. It requires us to be vigilant about our own motivations, our own competencies, and our own adherence to those principles.

Questions and Answers

Thinking of beneficence as an ethical principle, if I believe that seeing a client in person would benefit that client more, but the client is still virtual due to fear of COVID (or for other reasons), how do we rectify that?

That's a really good example of a dilemma where the client is making an autonomous decision, which may be in conflict with what we believe is in their best interest. So, again, our responsibility is not to bend them to our will but to ensure that we've truly discussed the potential benefits of "live" versus teletherapy. We can't make that decision for them, but we can just make sure that whatever decision they make is an informed decision.

What if the client is not cognitively able to make their own decision, does it become our ethical role to make those decisions for them?

No. If the client is not cognitively able to make the decision, then a surrogate decision-maker is identified. It may be a family member, or someone they have legally designated as a healthcare proxy or in a living will, or something like that.  But we are not the defacto decision maker in those cases.  Ultimately, parents are the defacto decision-makers for the child. In situations where the parent's decision seems very dangerous, you might have the recourse of contacting protective services or something along those lines, but ultimately the parents are the defacto decision makers for their clients. It would be the same if I was making a decision for myself. If I am making a decision for my child, ethically and legally, they're the same.

What happens if a client asks us for an opinion regarding a treatment, should we avoid providing our opinion, so we don't persuade them in a particular direction?

I think it's okay for us and very acceptable, for us to provide our professional opinion. That's part of our role as clinicians in particular courses of treatment. But if it's a little dicier than that. When a patient says, "Well, what would you do?" Or, "What would you do if it was your mother?" Then I think we have to avoid giving our personal opinions. 

References

American Speech-Language-Hearing Association. (2016). Code of ethics [Ethics]. Available from www.asha.org/policy/.

Bell, J., & Breslin, J. M. (2008). Healthcare provider moral distress as a leadership challenge. JONA'S healthcare law, ethics and regulation, 10(4), 94–99. 

Berkman, N. et al (2011). Low health literacy and health outcomes: an updated systematic review. Annals of Internal Medicine, 155(2), 97–107. 

Downs, S., Martin, E., & Aaron, B. (2022). Leveraging the Code of Ethics to Practically Promote Ethics During COVID-19. Nurse Leader, 20(1), 48–51. 

Geboers, B., et al (2015). The association of health literacy with adherence in older adults, and its role in interventions: a systematic meta-review. BMC public health, 15, 903. 

Horner, J. (2003) Morality, ethics and law: Introductory concepts. Seminars in Speech and Language, 24(4), 263-274.

Kummer, A. W., & Turner, J. (2011). Ethics in the practice of speech-language pathology in health care settings. Seminars in Speech and Language, 32(4), 330–337. 

Kutner, M., et al (2006). The Health Literacy of America’s Adults. Results from the 2003 National Assessment of Adult Literacy. National Center for Education Statistics, US Department of Education, Washington DC.

Rushton CH.  (2016) Building moral resilience to neutralize moral distress. Am Nurse Today, 11(10)

Rushton CH. (2016) Moral resilience: a capacity for navigating moral distress in critical care. AACN Adv Crit Care 27(1):111-119.  

Sharp, H. (2015) Informed consent in clinical and research settings: What do patients and families need to make informed decisions? Perspectives on Swallowing and Swallowing Disorders, 24, 130-39.  

Sharp, H. M., & Bryant, K. N. (2003). Ethical issues in dysphagia: when patients refuse assessment or treatment. Seminars in Speech and Language, 24(4), 285–299. 

Sheridan, S. (2011). Interventions for individuals with low health literacy: a systematic review. Journal of Health Communication, 16(3), 30–54.