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.

How do you create an Awake and Walking ICU?

Transforming ICUs: Creating Awake and Walking Patients

As the norm in most ICUs is to automatically sedate every patient that needs to be on a ventilator the second they're intubated and throughout their time in the ventilator, I get this question a lot. How do you create an awake and walking ICU? Since avoiding sedation and mobilizing most patients is so different than the cultural norm that we are used to that's been done for decades now throughout the ICU community. And I have experienced and seen that the best way to create awake and walking ICUs is to have a change in perspective, education, training, culture, and practices. Meaning that we must first change the perspective of clinicians. We have to disseminate the true perspective of survivors. What actually happens during and after sedation and immobility when clinicians understand the risks of their normal practices, they will be more willing to change their approach. Then we must provide the education and the training, teach them how to change their process of care, provide the resources and support necessary to change their culture and their dynamics and their approach to caring for patients and their everyday shift.

To create an awake and walking ICU, we must first change the perspective of clinicians, provide education and training, and support them to change their culture and approach to caring for patients.

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Creating an awake and walking ICU, which goes against the traditional practice of automatically sedating patients on ventilators, requires a shift in perspective, education, training, culture, and practices. The first step is changing the perspective of clinicians by disseminating the true experiences of survivors and highlighting the risks associated with sedation and immobility. When clinicians understand these risks, they become more open to changing their approach. Next, providing education and training is crucial to teach clinicians how to modify their care processes. Additionally, resources and support must be provided to facilitate a change in culture within the ICU and transform everyday patient care practices. By addressing these elements, an awake and walking ICU can be created.

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.

How do medical professionals balance the need for sedation with the risks associated with medically-induced comas?

Balancing the Risks: Sedation Stewardship in Medicine

Almost any medical intervention has associated risks. That's why we do a risk versus benefit analysis when developing a plan of care. That's the same approach that needs to be taken after every intubation. We need to be honoring and understanding the high risks of sedation, including increased risk of death, infection, delirium, long-term suffering and disability, and hold that up to the possible need and benefit of sedation for each patient. We need to be asking after every intubation, is there an indication for sedation? Sometimes there is. For example, intracranial hypertension is when there is increased pressure in the brain and being awake and moving can increase that pressure and increase the risks of absolute brain death. Therefore, we're going to accept that there's a risk of acute brain failure with sedation, but that the risks do not outweigh the benefits of sedating the patient in that moment. Then those kinds of cases are when we ask each shift every day, does this patient still have an indication for sedation? Does the benefit of sedation still outweigh the risks? When the indication for sedation is resolved or improved, we need to be then seeing if the patient can be without sedation and minimizing the risks associated with sedation. That's how we practice good sedation stewardship.

We need to assess the risks of sedation after every intubation and make sure that the benefits of sedation outweigh the risks. We should ask each shift if a patient still has an indication for sedation, and then minimize the risks associated with sedation when the indication is resolved or improved.

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Medical professionals must strike a balance between the need for sedation and the associated risks of medically-induced comas. To achieve this, a risk versus benefit analysis is conducted when developing a plan of care, just as with any medical intervention. After intubation, the high risks of sedation, such as increased risk of death, infection, delirium, and long-term suffering and disability, are carefully weighed against the potential benefits for each patient. The indication for sedation is assessed after every intubation. For instance, in cases of intracranial hypertension where increased pressure in the brain can be detrimental, sedation may be necessary to prevent further risks to brain health. Although there may be a risk of acute brain failure associated with sedation in such cases, the benefits outweigh the risks. It is important to continuously reassess the need for sedation on a daily basis and determine if the benefits still outweigh the risks. Once the indication for sedation is resolved or improved, efforts are made to minimize sedation and its associated risks. This approach ensures responsible sedation stewardship in medical practice.

What do should a family know before someone is intubated and put on a ventilator in the ICU?

Key considerations for families when a loved one is intubated and put on a ventilator in the ICU

Families in the ICU need to understand the risks of medically induced comas and also whether or not sedation is actually needed for their loved one prior to their loved one being intubated and put into a medically induced coma. Families need to understand the reality of delirium, what causes delirium, the risks of sedation in causing delirium, and that when a patient develops delirium under sedation, it makes it very difficult to later take sedation off. And so when families understand those risks, understand delirium, they can help advocate for their loved ones to wake up shortly after intubation unless there's indication for sedation. Then the families can be really helpful in helping the loved one acclimate to the tube, stay calm, stay empowered, communicative, and really tolerate the ventilator and the endotracheal tube. And this helps set the patient up for a much more successful course and true compliance with the ABCDF bundle.

Families of those in the ICU need to understand the risks of medically induced comas, delirium, and sedation before intubation so they can help their loved one stay calm and compliant with the ABCDF bundle.

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Before a loved one is intubated and put on a ventilator in the ICU, it is important for families to be aware of certain aspects. They should understand the risks associated with medically induced comas and whether sedation is necessary for their loved one. It is crucial for families to grasp the concept of delirium, its causes, and how sedation can contribute to its development. When a patient experiences delirium while under sedation, it becomes challenging to later reduce the sedation. Therefore, understanding these risks empowers families to advocate for their loved ones to wake up shortly after intubation unless there is a specific need for sedation. Families can provide support by helping their loved ones adjust to the presence of the tube, staying calm, and encouraging communication during this process. This approach greatly enhances patient tolerance of the ventilator and endotracheal tube, leading to a more successful treatment course and adherence to the ABCDF bundle.

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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.