HealthCare

What role do patients and their families play in the decision-making process when it comes to medically-induced comas?

Empowering Families: The Key Role in Medically-Induced Coma Decision-Making

So we have to understand that in most ICUs there is no discussion as to whether or not sedation is necessary or not after intubation. It is an assumption that any patient that needs to be intubated is going to be sedated and usually deeply sedated throughout their entire time in the ventilator. What should be happening is that there should be a true informed consent during or shortly after intubation with the family and or the patient depending on those circumstances. Care teams should be telling families and or the patients if you want to be sedated there is a risk of delirium which will double your chances of dying in the hospital, increase your chances of long-term cognitive impairments by a hundred and twenty times, increases your risk of psychological trauma, increased risk of infection, those kind of things should be disclosed to the patient and or the family and there should be a discussion as to whether or not there is an actual need for sedation. If there is not then the family needs to be part of that discussion as to whether or not to start sedation or continue sedation and families have a right to bring up these concerns to the care team and say hey I'm worried about these studies, this information, the evidence that shows that this is likely not necessary and or this is very harmful and lethal to my loved one. Families can be part of the discussion as to okay your loved one is agitated, anxious, confused. The families can be a big key player and helping keep the lines and the tubes safe during that hospitalization. If it was my husband in the ICU I would say I will stay here, I will hold his hands, he will not pull out his lines and tubes, please protect his brain, please give him the best chance to survive, I will help your team succeed in bringing the best care to my loved one.

In most ICUs, it is assumed that any patient that needs to be intubated will be sedated. Care teams should have a discussion with the family and/or patient about the risks of sedation, and families should be part of the decision-making process to ensure their loved one's safety.

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In most ICUs, there is often an assumption that sedation is necessary for patients who require intubation and will remain deeply sedated throughout their time on the ventilator. However, it is crucial that there is a true informed consent process with the family and/or patient during or shortly after intubation. Care teams should disclose the risks associated with sedation, such as increased chances of delirium, higher mortality rates, long-term cognitive impairments, psychological trauma, and infection. This discussion should involve both the patient and the family to determine if sedation is truly necessary. If not, families have the right to express their concerns to the care team based on existing studies and evidence that suggest sedation may not be necessary or could be harmful. Families can also play a significant role in assisting with their loved one's care by helping keep lines and tubes secure, especially if the patient becomes agitated or confused. They can advocate for their loved one's brain protection and work collaboratively with the care team to ensure the best possible outcome.

What should family members be aware of when visiting an ICU patient?

Empower Your Role: Key Takeaways for ICU Visits

Families in the ICU should be aware that 1. They are an essential part of their loved one's chances of surviving and thriving during and after the ICU. 2. They can and should ask questions. And 3. In many of our ICUs, we have very outdated beliefs and treatments in regards to sedation and how we care for patients on mechanical ventilation. Many clinicians still believe that every patient that is intubated on a ventilator must be sedated and cannot mobilize. And this is very dangerous and even lethal. So loved ones should ask 1. Does my patient have an indication for sedation? Is there a reason they're sedated? And 2. Is there a reason they can't be mobilized? And 3. Are we preventing, assessing for, and treating ICU delirium? And 4. When and how can we get sedation off and get my loved one up and moving? You can greatly impact the course and the outcomes of your loved one's ICU stay by understanding that you are part of the team, that there are things that we can improve on the ICU, and you can be an active part of improving those things for your loved one.

ICU families should be aware that they are an essential part of their loved one's chances of survival, and they can ask questions such as if there is a reason for sedation, why they can't be mobilized, and if delirium is being prevented, assessed and treated. They can also be active participants in improving the outcomes of their loved one's ICU stay.

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When visiting an ICU patient, family members should be aware of the following: 
1. They play a crucial role in their loved one's chances of survival and recovery during and after the ICU.
2. They have the right to ask questions and seek clarification about their loved one's care.
3. In many ICUs, outdated beliefs and treatments regarding sedation and mechanical ventilation persist. It is important for families to inquire about sedation indications and whether mobilization is possible.
4. Families should inquire about prevention, assessment, and treatment of ICU delirium.
5. Understanding when and how to reduce sedation and encourage mobility can significantly impact the patient's ICU journey.
By recognizing their role as part of the caregiving team, addressing areas for improvement in ICU care, and actively advocating for their loved one's well-being, family members can have a positive impact on the course and outcomes of their loved one's ICU stay.

Why won’t my loved one wake up from the medically-induced coma now that sedation is off?

Why won't loved ones wake up from medically-induced comas? The surprising reasons revealed.

There are a number of potential reasons why patients do not wake up after medically induced comas. Some of the less common reasons, but still viable reasons are potential strokes, brain bleeds, things like that, that could have occurred without being detected while patients were sedated. Another reason, more commonly, can be that sedation has accumulated in the body. When we have injured kidneys or livers, that sedation doesn't metabolize out of the body at a normal rate. Also, certain sedatives like propofol accumulate in the fat tissue. And so even when sedation has been turned off, there can still be a high level of sedation in the body causing patients to continue to be sedated. And that can take hours to days to weeks to really clear out. Another top reason for patients not waking up after sedation is turned off is because of hypoactive delirium, in which sedation has disrupted the brain so severely that it is not able to be aroused, not able to wake up. And so that can take again, hours to days to weeks for that brain to heal, recalibrate, and then reconnect with reality and with their environment.

Patients do not wake up after medically induced comas for a number of reasons, such as strokes, brain bleeds, accumulation of sedation in the body due to kidney or liver problems, and hypoactive delirium.

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There are various reasons why a loved one may not wake up after the sedation is discontinued in a medically-induced coma. Some less common but possible reasons include undetected strokes or brain bleeds that may have occurred during sedation. A more common reason is the accumulation of sedation in the body. In cases where there are kidney or liver injuries, sedation may not be metabolized at a normal rate. Additionally, certain sedatives can accumulate in fat tissue, resulting in persistent sedation even after the medication is stopped. It can take hours, days, or even weeks for the body to fully clear out the accumulated sedation. Another common reason for delayed awakening is hypoactive delirium, where the disrupted brain is unable to be aroused or wake up. The healing and recalibration of the brain can take time, ranging from hours to days or weeks before reconnecting with reality and their environment.

What is it like to be in a medically-induced coma?

Inside the Nightmarish Reality of Medically Induced Comas

I personally have never been in a medically induced coma and I wouldn't dare to answer for all ICU survivors but I have spoken to many through ICU survivor groups, I've read the research and I've interviewed many on my podcast and I would invite you to hear their voices here. Click the link below to hear their podcast episodes. Sedation is a huge risk factor to develop ICU delirium that's likely one of the main reasons why many patients experience severe trauma during medically induced comas. Sedation deprives the brain of sleep and it becomes very dysfunctional and damaged and that can lead patients to have severe what we would call hallucinations, nightmares, terrors, delusions but to the survivors, the patients themselves, it's real, it is reality to them and for whatever reason it often turns into something very gruesome, vivid, graphic. They are reliving past traumas, new traumas, they still receive input from their environment, they still hear and feel things but it gets twisted into their delusions and it becomes something much more traumatizing than the actual reality. They believe that their kids are kidnapped, there's sexual abuse, violence, horrific scenarios that we would never want anyone to survive or to endure but that is their reality during medically induced comas but that is what we are largely unaware of when patients look like they are sleeping while sedated.

Medically induced comas can lead to ICU delirium, which can be very traumatic for patients as they experience vivid and graphic hallucinations. They are still aware of their environment but it gets twisted into a reality that is often more traumatizing than the actual reality.

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I cannot provide a personal account of being in a medically-induced coma, as I have not experienced it myself. However, through my interactions with ICU survivor groups, extensive research, and podcast interviews with survivors, I have gained insights into their experiences. Sedation during a medically-induced coma poses a significant risk factor for the development of ICU delirium. This can lead to severe trauma for patients, as sedation deprives the brain of sleep and causes dysfunction and damage. During this state, patients may experience what we would describe as hallucinations, nightmares, terrors, and delusions. To the patients themselves, these experiences are their reality and often become vivid and graphic. They may relive past traumas or imagine new ones. Although they still receive sensory input from their environment, it becomes distorted within their delusions, resulting in highly traumatizing scenarios that go beyond the actual reality. Patients may believe that their children are kidnapped or experience sexual abuse and violence. These horrifying experiences are not what we would want anyone to endure but unfortunately occur during medically induced comas. It is important to recognize that while patients may appear to be sleeping while sedated, they are actually going through a challenging psychological journey.

Why do ICU patients come out of medically-induced comas with agitation?

Unmasking the Disturbing Reality: Why ICU Patients Come Out of Medically-Induced Comas with Agitation

When we turn down sedation and allow patients to come out of their medically induced comas, they often come out with agitation. This can look like biting, pulling against their gastrates, biting their endotracheal tube, trying to hit you as a loved one or clinicians. This can be really stressful for everyone around us, especially to the patient. This happens for many reasons such as pain, delirium, confusion, fear. As you can imagine, it's not comfortable to have the endotracheal tube down your throat. But survivors have more often than not told me that this agitation that they come out with is because of the delirium that they've developed. During sedation, their brains are disrupted. They don't receive real sleep and they get sucked into this alternative reality of hallucinations in which they think their kids are kidnapped, that they are kidnapped, that the worst, the most graphic torture is happening to them. So when we turn down sedation, we are unmasking what they're really experiencing under sedation, whether it be pain, fear and or delirium.

When we turn down sedation and allow patients to come out of their medically induced comas, they often come out with agitation due to pain, delirium, confusion, and fear. This is because during sedation, their brains are disrupted which causes them to experience hallucinations and alternative realities.

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When ICU patients are brought out of medically-induced comas by reducing sedation, they often experience agitation. This can manifest as biting, pulling against medical equipment, or attempting to hit loved ones or clinicians. It is a stressful situation for everyone involved, including the patient. Agitation can occur due to various reasons such as pain, delirium, confusion, and fear. Having an endotracheal tube down one's throat is understandably uncomfortable. However, survivors have shared that the agitation they experience upon awakening is primarily a result of the delirium they developed while under sedation. During sedation, their brain function is disrupted, preventing them from entering a state of true sleep and leading them into an alternate reality filled with hallucinations. These hallucinations may involve scenarios where they believe their children or themselves are kidnapped or subjected to graphic torture. When sedation is reduced, the true experiences of pain, fear, and delirium are unmasked.

What are some common misconceptions about sedation and mechanical ventilation in the ICU that family members should be aware of?

ICU clinicians' deep belief in sedation leads to potential over-sedation

Despite decades of research, ICU clinicians still deeply believe that sedation is sleep. They therefore believe that because their patients are sleeping while sedated, that sedation is more humane, it's more comfortable, it's more beneficial to patients, it's safer, it prevents psychological trauma, because they believe that patients are unaware of their environment and the things that are happening to them in the ICU. They're also very unaware of what happens after the ICU. We rarely receive feedback from survivors. Now I think that that may be because survivors are too traumatized to return to the ICU and tell us what they experienced and what life is like now. So without that information, without the research being discussed at the bedside, clinicians still believe that they are doing the best thing possible for patients when they sedate them, and that can lead them to sedate them even deeper at higher levels than would ever be necessary, because they deeply believe that they are doing the best thing for the patient.

Clinicians believe that sedation is beneficial to patients because they think it is akin to sleep, when in reality it can have long-term psychological effects.

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One common misconception in the ICU is that sedation is equivalent to sleep. ICU clinicians often believe that sedation is more humane, comfortable, and beneficial for patients because they assume patients are unaware of their surroundings and the events happening in the ICU. However, they are often unaware of what patients experience during and after their time in the ICU. Feedback from survivors is rarely received, possibly due to the trauma they experienced. As a result, clinicians continue to believe that deep sedation is in the best interest of the patient, leading to higher levels of sedation than necessary. It's important for family members to be aware of this misconception and advocate for appropriate levels of sedation and mechanical ventilation for their loved ones in the ICU.

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Kali Dayton,DNP,AGACNP answers your HealthCare questions. See all the advice Kali Dayton,DNP,AGACNP has and get answers to your own HealthCare questions.

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Kali is a nurse practitioner that specializes in sedation and mobility practices in the ICU. 

She is the host of 2 podcasts: 
“Walking Home From the ICU” is dedicated to helping ICU clinicians understand patient perspective and current research around medically-induced comas. 

“Walking You Through the ICU” provides information, perspective and tools to help loved ones of ICU patients advocate for practices for the best chance to survive and thrive. 

Kali trains ICU teams to become “Awake and Walking ICUs” through current research and humane treatments. She supports patient advocates to help ICU teams the ABCDEF Bundle in their loved one’s care in the ICU.