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If the choice between being sedated or awake and mobile was provided prior to intubation with the risks disclosed, what would the general public choose? Do patients and families have a right to know the risks of continuous sedation? I interviewed strangers in airports throughout the USA to learn more about their preferences.

Episode Transcription

Kali Dayton: [00:00:00] This is the walking home from the ICU Podcast. I’m Kelly Dayton, a nurse practitioner and ICU consultant. I help teams create awake and walking ICUs through evidence-based sedation and mobility practices. By hearing from survivors, clinicians, and researchers, we’ll explore how to give ICU patients the best chance.

To walk out of the ICU and go home to survive and thrive. Welcome to the ICU Revolution.

Okay. Before we dive into this episode, I want you to take a few minutes and answer some questions to yourself. Okay. Ready? What does informed consent mean to you [00:01:00] as a healthcare provider?

What does informed consent mean to you as a past or future patient?

What kind of procedures do you obtain informed consent for?

Why do we do informed consent?

Patient autonomy is something I’ve been thinking about since the very beginning of my journey as a revolutionist. As a nurse, I loved having patients be awake, communicative, and autonomous, so I knew what they needed. In the exception in which they were unable to make their own decisions. I often felt conflicted and distressed about.

Whether they wanted the care we were providing, especially when it was clearly terminal care. In episode 62, 4 years ago, I [00:02:00] proposed that patients and families had the right to know the risks of prolonged sedation. Even if sedation is necessary and unavoidable, we should still be disclosing the risks of mortality in and after the hospital.

Risks of cognitive and physical impairments, risks of PTSD. This helps families prepare to support their loved ones through recovery if they do survive. If we have the opportunity to provide options and have that discussion before intubation, we should treat it like informed consent and let patients understand how to have the best chance to survive and thrive, but we don’t do that.

In episode 75, Jeff Sweat talked about texting his wife as a COVID patient facing imminent intubation and assuring her. He would text her after the procedure of intubation. She knew he would be comatose and unable to communicate, but why didn’t he know that? Next thing he knew he was [00:03:00] emerging into a distorted reality, believing he was imprisoned for committing homicide, but was unable to talk or lift a finger, and he had no idea why he wished that he had been given to the chance to communicate and choose.

Before being sedated for weeks, is he alone in that preference of being made aware and involved before we administer this life-threatening and life altering intervention of prolonged sedation? I wanted to know what the general public thinks about this, what they would want in their care. As I’ve been traveling, I’ve been asking random people in the airport what their preferences would be.

I went up to them and asked if they would be willing to answer some questions for a podcast I did not say which one. I would ask them beforehand if they had any experience in the medical field. Most did not. I described to them a situation and gave them two options and asked them which option they would [00:04:00] choose and why.

Knowing my own bias, I really try to be truly objective and straightforward without showing my own feelings or influencing theirs. I said, imagine you are in the ICU for severe pneumonia. You are having a hard time breathing and are on a lot of oxygen. As much as they can give you without a ventilator, but it’s still not enough.

Your doctor tells you that you need to be on a ventilator to get more oxygen and help you breathe. You have two options. I showed them a picture of an intubated patient sedated. This picture looks like maybe a day after intubation, and they still have color muscle mass. They look clean and somewhat comfortable by the standards of someone that doesn’t know the reality of sedation.

So I show them this picture and say, you can be given continuous sedatives and be in a medically induced coma. This can increase your chances of dying. You may not feel, experience, or remember anything during that time. You will likely lose a lot of muscle mass while sedated and may [00:05:00] lose the ability to sit, stand, walk, swallow.

There is a chance that you may be able to hear and feel things, but won’t be able to move, communicate, or interact with your environment. There’s also a high risk of having really vivid hallucinations and cognitive impairments. This can result in PTSD and a brain injury like a traumatic brain injury.

Then I showed them a picture of an elderly man that was intubated and looking like he was pretty sick and working hard to walk. Nothing glamorous or sensationalized. I then said option two is that you could be awake after the procedure of placing the breathing tube. You will cough, gag, and feel like you’re breathing through a straw.

You’ll be given your cell phone or a pen and paper to communicate since you will not be able to talk as long as you’re able. You’ll be allowed to sit, stand, and even walk. This will minimize the time you spend on the ventilator and give you the best chance to maintain the ability to walk and go straight home back to [00:06:00] your normal life.

After this pneumonia is better, I then asked, which option would you choose? Here is what they said. Would you prefer to be awake or sedated? I would definitely prefer of be awake. Outcomes because even non sick, you’re able to interact with the people around from your loved ones. I think that mental health creates a big role in your physical health too.

And yes, it just seems like it would be a shorter recovery period. A lot of when in the ICU state decreases because of mental health aspect. They also don’t know that it can cause this awareness hallucination. They believe that it’s sleep. So I want to do what’s moreane. Or what they think they’re more humane and they don’t want patients to experience Atory issue.

So how do you would hope with a two down your throat? I think it would be obviously uncomfortable, but I think it also is that we was to an end, you’re, you’re getting a medical help. It’s just like taking you any sort of like surgery or medication or that it’s whatever is [00:07:00] doing. So you kind of help you get through whatever illness that you’re dealing with.

Do you think patients and the general public have a right to know different options and risk rein cobbles? Episode, what would your preference be? I would prefer the second option, which is to be awake. I would rather be a little uncomfortable and feel a little pain than have to deal with like long-term side effects and be put like in a coma against my will.

I would definitely rather stay awake and be a little uncomfortable. Yeah, I agree. I wouldn’t wanna have to deal with any long-term side effects or anything that could be life-threatening and I think it would be more. Optimal to be awake throughout the process, even if it’s uncomfortable, and I think giving the patient the option to choose between the two would be really good.

It’s not standard to explain these risks. The patients, most ICUs patients are automatically sedated and to medically induced comas, no matter the reason they need the [00:08:00] ventilator. What are your thoughts? You mentioned giving the options. What are your thoughts about the fact that that’s not explained, disclosed, or.

The choice is not given to patients. Yeah, I think that’s almost sounds illegal, honestly. I think if the patient obviously is induced and they can’t say anything about it, maybe just having a provision where like their next closest family member kind of makes that decision for them or they, somebody like puts it in writing before they even ever have to go through it.

I think just having something in place before it actually happens. Like informed consent prior to surgery? Yes, exactly. Thank you so much. You’ve given those two options. Which one would you choose? Second one. Why would you wanna be awake the second one? Because of like less sad things happen. What would help you get through?

What would you want your IC team or your [00:09:00] family to do to help you be comfortable with that tube in your throat? You just push through it. Thank you so much. Would you rather be ated or awake in the mobile? I would be awake. I would need more like specifics on cost and all that too. Just ’cause the first one seems like more of a negative option, that you have more potential symptoms afterwards that are more mental and then, but it seems like the awake one awake option seems very positive.

I just don’t know what are, like the other aspects of it. Like cost might be worried about cost. Like I know for me, I’m a college student and I don’t have a whole lot of money, so I’d be curious about that. Uh, so one study showed that being awake with no sedation, decreased time on the ventilator, by 4.2 days, gonna decrease your chances of going to care center, having a tracheostomy, having to rehab.

So in general, this approach decreased cost by 30%. I to [00:10:00] call a student. Would you like a 30% decrease on your bill? Not bad. Um, then would there be another like surgery to remove the tubes eventually, or no? Nope. We just take it out. Now, there’s a chance that if you are sedated, you could lose your muscles.

You needed to breathe, like your diaphragm can become really weak. So you could need to have a tracheostomy, you know, a full cut in your throat and a little tube in there. That’s a surgery and that’s a procedure also to remove that. Right. Uh, so then I guess with knowing that I would choose the awake option, how about you?

I would choose to be awake. And what would you need to be able to tolerate that tube and be awake? It’s kind of like having a leaf blower hooked up to a tube into your lungs. What do you think would help you? Um, I think it’d be, for me at least. I would be able to handle just knowing that there’s a tube there and the sound.

I’d be fine with that, knowing that I’m awake and I can move around and I can text and I can do daily life things instead of being an induced coma and possibly [00:11:00] having more things go wrong. Uh, so you’d rather have your hands free and able to text and be tied down? Yeah, say so. I would probably be able to deal with the tubes being like going down.

Um, I don’t think I’d have any issue with that. Do you think that if you were this patient, you would have the right to know? Do you think these things should be discussed and disclosed to patients that there’s a chance before they’re on a ventilator or with the families? I believe that’s information that should be disclosed.

Yes. Yeah, for sure. Yeah. Would you prefer option A to be sedated in a medically induced coma or option B to be awake and mobile? Option B. Why is that? I would prefer to know what’s going on around me. Um, I’m not big on any sort of anesthesia or being out of control, so I think even if there was discomfort, I would [00:12:00] probably make peace with that somehow.

Maybe through meditation or some other ways of handling that. Can I ask how old you are? I will be 73 this month. Do you live independently? Yes. And what does that mean to you? Um, living the way I’m living now by myself, uh, in charge of all my affairs. Um, I’m a professional singer, so I’m actively singing, um, I’m doing gigs here and there, so, um, but I’m anticipate that not lasting for a lot longer, but that’s what I see as being independent living so.

How important would it be to you to have your physician, your nurses, your whole care team understand that about you? That you see that you want to preserve your diaphragm function, that you want to live independently, and that A or B could greatly impact what happens to you for years after this pneumonia?

I think that [00:13:00] would be critical in what my choices would be. Knowing all of that and. What I would preserve, what I wouldn’t preserve, what I mean doing something that would be making, uh, induced coma. The one thing that I consider my livelihood would be taken away from me, probably. And it’s not normal to provide these options to patients.

It is usually just assumed your on a ventilator, you’re gonna be in a coma. Maybe we’ll tell you, we’re gonna state you, maybe we won’t. And you just wake up days or weeks later. In a very different condition. How important is to you as a patient to be informed of these decisions and the risk versus benefit of these decisions?

Well, extremely because, um, in my previous job where I worked with physicians all day long, I developed really personal relationships with them and I expected them to treat me. In the way that, uh, when I interacted with the medicine IT professionals, so I would expect that of any of my physician [00:14:00] care providers.

You feel like a patient have the same rights? Absolutely. Sure. Thank you so much. What would you slip there? What would your choice be? To be in a medical induced coma or to be awake in,

aren’t you afraid of the men fighter?

Are you afraid of it being uncomfortable? Yeah. Yeah. But being uncomfortable. You’re the master. A lot of kids. Aren,

what would she want to help you endure? That kind of experience that did all that well, I think that, and wouldn’t have a really good sound around you that makes it. Variable right for me, to me about getting to the end of it rather than what I’m dealing with. The shorter another time it’s gonna be used sense icing that when they are spading you, they’ll [00:15:00] give you some kind of anesthetic.

Something like that. You know, again, it’s still gonna be there and you’re still gonna feel as around as you can be comfortable while getting through it. That’s kind of the key really. Tuesdays and the general public had a right to know those two different options and the risks involved. Absolutely. I mean, making an informed decision, right, and certainly I think as we aim, we become more malleable.

You risk, people would tell us fast what you should do, and we just believe him, right? Because they’re medical professionals. This is what they do all day. So I create AOP Prime is having the F two maybe apps and face it down and just give you real information. Makes sense. A much easier to make a decision that’s trying to create yourself.

Which option would you prefer sedated or awakened? Mobile. I feel like I would do awaken mobile first if it was ruined that bad than opt to be sedated. Oh, I like that. So [00:16:00] we feel like when possible, which is quite often that clinicians, people caring the people on ventilators to let the patient. Say what they’re experiencing and what they would prefer if they’re able to Yeah.

I, their situation, they would be able to see what they, to take yourself. You should you feel like if, if that this was a real scenario for you, that you would want to be informed of these options and choose for yourself which treatment you would want. I do mostly being numb because I know that my body can stand more and I know that there found a lot of research and the more you push yourself using the faster you bounce back at the end.

And it’s just, do you feel like patients should have a right to know? Yeah. And you should able to advocate for yourself, if you will, too. Perfect. And how do you think you, what kind of things do you think would help you cope and manage with having the two younger field? I think at that point, just the concept of reassurance.

Just at that point, you know what they’re doing to help you, rather than having host nations and not knowing he’s around. Yeah. Or just that feeling of fa able to [00:17:00] hear everything but not able to say anything like that freaks me out. Yes. I have to have the last word, so I have will say something. Yes, absolutely.

Okay, thank you. So which intervention would you rather run? Ventilator, sedated or awake? And mobile. Wake And mobile. Waking. Mobile. And you’re a little biased ’cause you’re a pain team of course, but in waking whole health, what have you seen? What would influence that to It’s just, yeah, it’s just better to get moving faster and quicker.

What do you think? Wake up mobile and our concern of that I Irv be so uncomfortable and that we’re worried that we won’t be able to manage their anxiety. And what kind of things do you do speculate would maybe help you? What would you prefer? Obviously you guys are here as a family, Eugene, what would help, what would, would you hope the, as clinicians would.

Provide or offer to you or help you to be able to cope with a two gun throat? I mean, I guess it depends. I mean, being awake and what the tube is definitely better than be sedated. Yeah. [00:18:00] And that way you can do more and they get you Aiden out. You feel like you want to have those off the plate. You and the risk before you were, I’m gonna, if there’s a champion and Stella, why as a pt, why do you think that we don’t want to offer that options?

I always say that uh, people in the medical field assume that everybody else knows as much as we do and we don’t or they don’t. Um, and so I think our explanation as hot as a blood as it could be holy most people, and how do you make it a one decision that you’re not to court? Right. Thank you.

As a radiation onca oncologist, what would you prefer in your care? There’s a reason why patients are sedated, and all of those things that you were describing could very well be related to the disease itself and not the sedation. And the sedation is used because people [00:19:00] fight the vent and people fight the intubation, and so there’s a medical indication for the sedation.

So I would choose that. And if you knew that. Avoiding sedation could decrease your chances of delirium by 50% and increase your chances of going home rather than to a care facility by 36%. Would that impact your decision making? I would wanna see the data loudly. Do you think? Patients have a right to know prior to these procedures or these interventions, what their options are and what their risks involved are.

They usually don’t have time to have a detailed discussion. A lot of times these things are done in a emergency, urgent situation to save patients’ lives. Absolutely. Should the families be aware of this even after intubation, once the dust is settled? Of course. Thank you so much. Which one would you prefer?

The second one, the, uh, stay awake. Why, uh, feel quicker, [00:20:00] more natural. What about having something down in your throat? Very unnatural? Yeah. How do you think you could tolerate that? It’d be hard. So why would you still choose to be fully aware of it? Because you’re able to get out of it faster. He’ll click a hurry, you have to take a buzz drugs and all that stuff.

You’d rather rush through it. Raw dogging. Is that what people call now? Honestly? Yeah. Okay, perfect. If you’ve been listening to this podcast, you are likely convinced that sedation and mobility practices in the ICU need to change. The ICU community is facing incredible difficulty with the trauma from the Pandemic staffing crisis and burnout.

We cannot afford to continue practices that result in poor patient outcomes. More time in the ICU. Higher healthcare costs and greater workload for the ICU team. Yet the prospect of changing decades of beliefs, practices, and culture across [00:21:00] all disciplines of the ICU is a daunting task. How does this transformation start?

It can begin with a consultation with me to discuss your team’s current practices, barriers, and to formulate a plan to help your ICU become an AWAKE and walking ICUI help teams master the A-B-C-D-E-F bundle through education consulting, simulation training, and a bedside support. Let’s work together to move your team into the future of evidence-based ICU care.

Click the link in the show notes of this episode to find out more

each person that I asked. Do you think patients have a right to be informed about the risk of medically induced comas, responded with Yes. And even speculations that it’s legal or unethical not to. Let’s circle back to those initial questions about informed consent. Let’s think about pre intubation or early post intubation and our interactions with patients and or families or proxy decision makers.

I founded this great [00:22:00] explanation about informed consent, and I invite you to hold it up to the information that we provide around continuous sedation and immobility. Stat Pearl says that obtaining informed consent in medicine is a process that should include the following five steps. One describing the proposed intervention.

If your current unit automatically sedates, all intubated patients are patients told that they will be sedated too. Emphasizing the patient’s role in decision making. If the patient does not have an absolute indication for sedation such as intracranial hypertension, that is epilepticus the inability to oxygenate movement, et cetera, or already have an altered level of consciousness, do we involve them or their proxies?

In deciding whether or not to sedate them. Three. Discussing the alternatives to the proposed intervention, do we tell them that it is possible to be awake, communicative, autonomous, and mobile after [00:23:00] intubation? Four. Discussing the risks and benefits of the proposed intervention. Do we tell patients or families that continuous sedation will increase their risk of delirium by 214%, and that delirium.

Double the risks of dying and increased risks of long-term cognitive impairments similar to mild Alzheimer’s by 120 times, and greatly increased risks of life altering and even life ending. PTSD, do we tell them that as we keep them as awake and mobile as possible, that we can increase the chances of being alive in a week by around 68% decrease risk or duration of delirium by 50%.

And increase their chances of discharging home rather than to a care facility by 36% because they’re much more likely to preserve the ability to sit, stand, walk, and swallow, and therefore get off the ventilator and be ready for life. Do we share that they’ll be 46% less likely to end up back in the hospital if they’re awakened [00:24:00] mobile?

Do we tell them that if they’re awake without sedation, they could be off the ventilator around 4.2 days sooner than if we did daily awakening trials? Five. Soliciting the patient’s preference, often confirmed by their signature. Do we ask them what they actually want before or after they’re intubated?

While they’re intubated? Do we inform them and let them choose? When being, do we inform them and let them choose When being awake into mobile is an option? Should we ethically, what are the obligations here? Let’s talk about a few ethical aspects of informed consent One. Autonomy and self-determination.

Informed consent is grounded in the ethical principle of respecting patient autonomy and allowing them to make their own choices about their healthcare. This includes respecting their autonomy before intubation, but especially after. Think of all the procedures we do in the ICU that require informed consent, but we deprive the [00:25:00] patients of being involved in that.

Susan East in episode three. Talked about being awake while in debated per her request. The second time that she had a RDS, she was listening to everyone around her talk with a doctor about doing a bronchoscopy, and her family was refusing. When she raised her hand and asked for the authorization form to sign herself, she was able to make her own decision for bronchoscopy.

Think about how often we have maybe. Older adults that come in with something pretty treatable like pneumonia and their DNR, but they agree to be intubated partially because we anticipate just a few days of event and they’ll be out of there. Now they’re sedated and have no autonomy. Now this turns into septic shock and boom, their kidney shut down, and now we’re looking at CRT or dialysis.

Do they want that now? They’ve been sedated for a week and they’re delirious and it’s hard to take sedation off and. They develop IC cardiac weakness and diaphragm dysfunction. And so now we’re talking about [00:26:00] a tracheostomy. We all know this was a functional, older adult that didn’t want CPR thought this would be a few days in the ventilator, and now we don’t know if they would be okay with a tracheostomy, potentially long-term dialysis and an LTAC admission.

But now we can’t ask them. We’ve taken away their autonomy with sedation. The Larry ICU acquired weakness, they can’t write on a clipboard what they want. They can’t point to a letter board. They can’t understand what’s going on and make those decisions, let alone communicate. Now we get to figure this out with the family’s best guesses, which we’ve all had really difficult experiences with.

The second ethical principle is beneficence and non maleficence. Beneficence is the quality of doing good, being charitable, doing good things. Non maleficence is the concept of do no harm. This includes several moral rules, and I want to point out a few that we especially should consider here in the context of considering and disclosing the [00:27:00] high risk of sedation, which are do not kill, do not cause pain or suffering, do not incapacitate.

Ultimately, if we are drastically increasing risks of mortality, causing or contributing to suffering and incapacitating our patients in the short and potentially long run. Are we really practicing non maleficent with automatic sedation and immobility, especially when we don’t even disclose the risks?

The third ethical principle is shared decision making. Informed consent is increasingly viewed as a process of shared decision making where the patient and the provider collaborate to determine the best course of action. Only time in which we may not do that is through in emergencies. This can be when a patient is incapacitated and there’s no surrogate decision maker available.

Treatment may be initiated without prior informed consent, which can obviously be the case in numerous intubation situations. But as soon as there is a decision maker or the indication for sedation is improved, we need to be [00:28:00] getting them for the patient informed and involved in weighing out the risks.

There are also legal considerations to all of this. I’m obviously not a legal expert. I’m unsure of what kind of legal repercussions could be faced by our current lack of informed consent before continuous sedation, but for informed consent in general, there is the following, one, statutory law. Many states have codified medical informed consent and is statutory law, meaning physicians must adhere to these specific requirements or face potential negligence to claims.

This especially applies to procedures such as central lines, intubation, surgery, blood administration, et cetera. Logic leads me to suspect that it should also be in place for high risk interventions such as continuous sedation. Two. Duty to disclose. Healthcare providers have a legal duty to disclose material information to patients even if they don’t believe it will impact the patient’s decisions.

Could survivors or families hold [00:29:00] us accountable for failing to disclose this information if they have these life threatening and life altering complications from being sedated and immobilized? But the risks were never disclosed beforehand, could it be claimed that the legal obligation of duty to disclose was not honored?

Three. Reasonable disclosure, the level of disclosure required is generally determined by what a reasonable person would want to know to make an informed decision about their care, at least to those that I interviewed. The general public seemed to think it was reasonable to disclose these risks prior to or right after intubating a patient or.

Documented and informed consent. Written consent forms are often used to document the informed consent process, ensuring a record of the information provided and the patient’s agreement. Now, we don’t have a written consent forms for continuous sedation, but as of now, we may be wise to document some kind of notation or record of having these conversations with [00:30:00] patients and or families to be safe and start to set the culture of disclosing this information and providing informed consent.

As part of the standard of care and normal part of caring for patients on mechanical inflation. So in conclusion, it’s time to see sedation and immobility as a high risk intervention that ethically and legally requires informed consent. Patients and families have a right to know the risks involved and when possible, be part of deciding what risks they are willing to incur.

I believe that implementing informed consent will drastically change patient care. Keep patients and clinicians protected from harm for years to come. What are your thoughts on this? I would love to hear your insights, experiences, and comments on this topic. Leave a message on this episode. Send me an email or message on social media.

Let’s keep the conversation going.[00:31:00]

To schedule a consultation for your ICU as well as, find supportive resources such as the free ebook, case studies, episode, citations, and transcripts, please check out the rest of my website.

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