But what does the patient think? Discussing Patient Autonomy in Healthcare

How well do we, as SLPs, consider patient autonomy when making clinical recommendations? It's a crucial aspect of patient-centered care, yet we need to receive a lot of education on how to value autonomy and implement this type of care in our practice. When prioritizing patients' wishes, we can make an enormous difference in their care and lives. But when we don't, the patient may feel unheard and neglected. A way to gauge how well we are doing is to see how likely patients are to adhere to our plan of care. This study found that 51.3% of patients follow recommendations for their dysphagia. In other words, half of our patients ignore those recommendations that took endless hours of evaluation and research to formulate. Maybe we could do better in this whole patient-centered care thing, after all.

Picture yourself as a patient. You've come into the hospital for a headache and some dizziness. Next thing you know, you're admitted. It's the middle of the night, but you can't get any rest because you're constantly being carted up and down the hospital corridors for testing. You're exhausted after a CT scan, MRI, and chest x-ray. You're hungry and thirsty, too, and made NPO until you get a swallow evaluation. After all the testing, it's 8 AM, and you feel like you can finally get some rest. That's when the SLP bursts through the door, ready to do another exam.

"Hi, I'm your SLP, and I'm going to do a swallow evaluation to see if we can start to feed you."

"Oh, I didn't think I had a swallowing problem," you say.

"Hopefully, you don't. Let's take a look."

You're asked to consecutively drink 3 oz of water, which sounds like a tall task with you being tired and weak, but you're really thirsty, so you don't hesitate. You chug that water like it's the last one you'll have all day. Turns out... it is. You clear your throat slightly at the end, and your SLP stares intently.

"Uh oh, you might be at an increased risk of aspiration pneumonia."

"Aspiration? Pneumonia?? Why?"

"You coughed on that water, so we need to order additional testing. The radiology suite is fully booked today, so it must be tomorrow. I'm sorry, but we have to keep you NPO for today. That means you can't have anything to eat or drink until tomorrow."

"Coughed? I cleared my throat because it’s dry. It's been 15 hours since I've had something to drink. Give me another chance; I'll do it right now."

"Unfortunately, with a possible stroke, this is not unusual. I know it's not ideal, but I'm sure it will only be for today. Once we have the modified barium swallow study, we can see what's going on and recommend a safe diet for you."

"That's all fine, but I need to eat something. I'm not just going to sit here and wither away. I don't have a problem swallowing and won't get aspiration pneumonia. Trust me."

"I understand how you feel, but this is our protocol. And I do feel it's best."

This situation may seem familiar. The patient wants something we think is unsafe, and we educate them to get them on board. This type of paternalism is not unusual in healthcare. It used to be a lot worse. Decades in the past, you'd go to the doctor, and they'd tell you what to do, and that would be the end of the discussion. However, a massive backlash against the medical community occurred in the 1970s after abuses in medical research surfaced. This was awful for the reputation of healthcare but suitable for the changes needed to take place. At least now, paternalism is often actively rejected among patients and even in the medical community. But old ways die slowly. This may be why we still use terms such as patient "refused" a specific treatment and even consider discharging a patient from services if they don't "comply" with "orders."

Paternalism

Many healthcare providers (Yes, SLPs too), and even patients, still believe that paternalism is the best approach to providing care. After all, the provider knows best and is in an optimal position to choose the most effective strategy based on the research, industry standards, and clinical experience and to sort out the statistics behind the costs and benefits of different options. The patient may be dealing with many emotional and physical stresses that may impair their ability to make the best choice. Isn't it the provider's job to make tough decisions so the patient doesn't have to?

As you can see, the situation is not as black and white as you may have thought. Patient autonomy is wrapped in the enigmatic relationship between the patient and the provider. The provider must care for the patient while accounting for their expectations, preferences, and values. These two things can work together but often oppose one another because of the inherent complexity of the many variables involved in a medical decision. For example, the provider is responsible for determining what decision may have more benefits than risks. Still, the patient is the only person who can answer that question. The patient knows how much risk they are willing to accept and what the actual value of those benefits is in their lives.

Further, many of these risks and benefits are taken from research samples that may not accurately reflect the clinical presentation the individual patient represents. The research findings may also be subjective, up for interpretation, contain unknown unknowns that aren't considered, and may even be irrelevant to the patient's wishes. And nobody is perfect. Healthcare providers have a track record of making mistakes, so what the provider thinks should never be the law of the land.

Do Better

The truth is, safety and extending life is not always the patient’s primary objective. The only way to determine the priority is to create a plan of care not for, but with the patient. Thankfully, two other models of healthcare have emerged since the 1970s that are more in line with patient-centered care. These include the technical model and the shared-decision approach. The technical model can be described as the provider giving all the appropriate information and allowing the patient to make the best choice. A shared-decision approach is like it sounds: The patient and the provider decide together. The provider uses their vast knowledge and expertise to help guide the patient toward the best decision, depending on their preferences.

There, of course, is no one approach that works for everyone. I have found that some patients expect and even prefer a more paternalistic approach. The patient is scared, anxious, and confused. They are intimidated by the various options and want someone to decide for them. Another patient may be well-versed in their condition and the different treatment options and may opt for more of a technical approach where the doctor helps to spell out the various risks, benefits, and relevant statistics, but the patient calls all the shots. Finally, patients who need help understanding their condition or treatment options but have a strong sense of their preferences and values may benefit from a shared-decision approach.

Knowing what we know now, how would YOU have liked the SLP to approach you at the hospital for a swallow evaluation?

"That's all fine, but I need to eat something. I'm not just going to sit here and wither away. I don't have a problem swallowing and won't get aspiration pneumonia. Trust me."

"I understand where you are coming from. The research tells us that we can expect around 10% of people after a CVA to develop aspiration pneumonia. One crucial indicator is if the patient has a sign of aspiration after a 3 oz water test, which means you may be at an increased risk. I don't want you to have an unnecessary risk if we can avoid it. What's most important to you right now, and how can I help you achieve that?"

"I see what you're saying. Right now, my priority is getting something to eat and drink. Is there something that I can have safely today before my test tomorrow?"

"Well, if we allowed you to have water after good oral care, the research tells us that the risk of aspiration pneumonia may be low, especially for a younger, mobile patient with intact mentation like yourself. In my clinical experience, I have rarely encountered a patient who has developed aspiration pneumonia from water alone, so this may be a good option for you. Of course, it doesn't eliminate the risk, but it's safer than other consistencies and could be the best option if you feel strongly that you need to have something by mouth.

"Yes, I do feel strongly about that. OK, I will stick to water today and brush my teeth like my life depends on it! Thank you so much for listening and working through this with me."

Some questions we can ask to build an effective plan of care with the patient (Taken from Being Mortal by Dr. Atul Gawande):

1. What is your understanding of the situation and its potential outcomes?

2. What do you want most? What is most meaningful to you?

3. What are your fears and what are your hopes?

4. What are the trade-offs you are in are not willing to make?

5. What is the course of action that best serves this understanding?

The Times They Are A-Changin

We can do better. The fact that half of our patients ignore our recommendations should give us pause with our current approach to decision-making. So, how do we improve engagement and buy-in? It's not a science. Different approaches may work best for patients depending on their specific needs. Paternalism used to be the go-to approach for most medical providers, but many patients have learned that they know what's best for them, and healthcare providers have learned that they don't know as much as they thought.

Patient's preferences, expectations, and values will also change over time. Goals need to keep up with the evolution of the condition itself. This is why having multiple discussions over time and giving space for the patient to dictate what they need will ensure that the goals we set are meaningful to the patient and in line with their objectives. If the provider's goal is different than the patient's, then what is the point? What is the value of preventing aspiration if it removes something the patient sees as an integral part of life? We want to build a foundation for recovery with the patient, not get into a game of tug of war. The most important thing is understanding what the most important thing is... to the patient. After that, and never before, we can work towards our goals.

Enjoy learning about clinical decision making? Consider taking our short course, Complex Decision-Making in Dysphagia Management to learn more.