Expectations for Families of COVID-19 Patients on the Ventilator

On 8/9/21 I put out a tweet discussing (in a certain limited number of characters) how difficult it is to get a patient who is intubated and placed on mechanical ventilation because of severe COVID-19 ARDS. I used the analogy of landing an airplane in a hurricane. Definitely not easy. Something came over me where I spontaneously hit the keyboard and started putting down some thoughts on my phone when I was reposting the tweet to my instagram account. There I discussed the intricacies of my telephone conversations with most of the families who I try to speak to every day, setting the expectations of everyone during their COVID course.

I must admit, I’m an overall optimistic guy, but there are certain realities that come into play when a patient meets me. My team and I will work our hardest to save the life of every single COVID-19 patient who we take care of. Once that was posted on instagram, my write-up on expectations provided for family members has been liked over 6400 times and has reached over 67000 people. It has obviously struck a cord. Because of this response, I have decided to elaborate a bit more here on my website as I do not have a character limit as I do on twitter, instagram, and other mediums. Some may get upset for me writing this but someone needs to be up front and direct with the families of COVID-19 patients on mechanical ventilation. I will not sugar coat it. Pray for the best but prepare for the worst.

The odds are not in the patients favor, unfortunately.

1. Mortality on the vent is over 50%. Formal data on this is missing. No one wants to tell the truth in a peer-reviewed paper. It may make their hospital look bad and no one wants this. Ivory towers say 20-30% but we all work in the real world. It’s challenging to make sense of the data overall because we have all attempted different timing strategies as to when to pull the trigger with intubation. Kudos to those in NY who published their 88% mortality at the beginning of all this.

During the first wave we tried to not intubate unless is was absolutely necessary. This sometimes meant placing patients on BiPAP for prolonged periods of time which I was never a fan of. You watch these patients take monster tidal volumes and cause self induced lung injury which isn’t good for them since their inspiratory drive is through the roof.

The other variable to these data is defining when they’re intubated. Despite this, I’ve tried different strategies and in this current wave with younger patients, 50% mortality is a fair number. We’ve had some success but one has to be patient. I have gotten to the point where I frankly tell the family members of patients who are elderly with comorbidities such as dementia that they absolutely will not survive because unfortunately they will not. The preventive measure for them to survive today is out there and they should absolutely get it. If not, it’s only a matter of time. There’s no excuse in the United States for elderly patients to not be vaccinated for non- physician recommended reasons. Zero. Assume personal responsibility and live with the repercussions of their decision. Pregnant patients with COVID also do not do well, unfortunately. Neither do patients with obesity.

Patience is a virtue.

2. Once intubated, they will be on the vent for at least a week, sometimes months, should they survive. Going back to the first point, even in healthy patients with no comorbidities, the shortest time I’ve personally seen someone on the vent for true COVID-19 ARDS is 7 days. The longest I have cared for a patient on the vent and they have survived is 57 days. Their lungs need to heal. Sometimes this happens sometimes it doesn’t. In ARDS there is something called fibroproliferative ARDS where the lungs basically turn into scar tissue. Air cannot penetrate scar tissue. I’m oversimplifying, I know, but the audience here is broad and I’m trying to meet the lowest common denominator for the sake of communication. These are the folks who end up requiring a lung transplant after meeting numerous criteria.

Here’s the unfortunate part. There aren’t enough lungs to go around for all the people who will eventually go on to needing a transplant. We can call the transplant center all we want but the odds are not in your favor. Some families have asked about ECMO. Unfortunately, there isn’t enough ECMO to go around for everyone. There are criteria that need to be met. Just because you call administration doesn’t mean you will get your way. Resources are always limited. Once someone has been on the vent for 8 days, their chances of surviving ECMO are so low that they will not be placed on that machine. Not to mention that ECMO itself is not benign and has its own litany of complications.

Secondary Infections

3. Since they likely received steroids and IL-6 inhibitors, they are prone to dangerous secondary infections. These patients spike fevers randomly and their white count is all over the place. Using the CRP is completely unreliable. We culture these folks’ blood, sputum, and urine, start broad spectrum antibiotics, and just watch. Many of them are on vent settings too high to consider doing a bronchoscopy to identify the bug, if there even is one. Many have central lines and arterial lines.

It’s a thankless job in that CMS will get mad at us for trying the best we can and diagnose a fungal pneumonia on someone who was on high-dose steroids and also received tocilizumab. Also, fungal infections are far harder to diagnose than bacterial infections. Starting empiric therapies to cover for this is costly and put the patients at risk for adverse reactions. Damned if you do, damned if you don’t.

Groundhog Day.

4. A day that nothing goes wrong is a good day. Every day, as mentioned above, the patient is trying to die. Had we not intervened in the ICU, they would already be dead. Hate to say it but that’s the truth. That’s why we’re here trying to stop it. But it’s not only one person/patient. Multiply this by the amount of critically patients we’re responsible for. The vent is not harmless. The pressures needed to oxygenate and ventilate the patient can cause barotrauma. The alarms are always going off on the vent. Infections are always trying to invade the patient. Every medication we give has adverse effects.

As mentioned the immune system of these patients are not working like they should. Even the IV in the arm can get infected and cause them to go into septic shock and die. We watch out for all this stuff, we have protocols for this, but nothing is 100%. Even if we aren’t able to crank down the vent, if the patient survives that day is a good day. No need to get disheartened if this is a one day update. This is a marathon and not a sprint. As mentioned before, this is going to take a long time to resolve. We’re doing the best we can every day.

Discharge Planning: Trach and PEG

5. They will likely not go directly home should they survive. They will be extremely weak and potentially need a tracheostomy and PEG. Plan on an LTAC, nursing home, or inpatient rehab. If they’re really lucky, home with home health. Is this what they would have wanted? When we intubate COVID patients and place them on mechanical ventilation, they receive very strong medications so they don’t fight the ventilator nor try to pull the uncomfortable endotracheal tube out of their throat. They also received steroids for a prolonged period of time. We can expect that they develop critical illness polymyopathy which leads to severe weakness. It’s not like they’re going to be able to hop out of bed and get in the shower nor brush their teeth.

We place trachestomies when possible in patients so that they don’t have that sensation of the tube in their throat choking them. This allows us to decrease sedation and work a bit harder with physical and occupational therapy. A tracheostomy is reversible in most patients. They’ll have a battle scar should they be lucky to survive. The issue is that every institution has criteria as to when a patient has a tracheostomy performed with regards to time on the ventilator and ventilator settings. We need to be prepared for things to go wrong and if they’re requiring too much oxygen or support, we are not going to run the risk of a surgical procedure.

Once a tracheostomy is completed, we start thinking about an LTAC which stands for Long-Term Acute Care hospital. Sometimes these aren’t even available. At these facilities they focus strongly on weaning from the ventilator and physical therapy. As the patient is weak everywhere in their bodies, they will also be weak in the muscles responsible for speaking and swallowing. This means they will benefit from a PEG tube which is a feeding tube from the abdominal skin into the stomach. This is also reversible and will also leave a scar to show off at the beach when wearing a Speedo or bikini after recovery.

Citation on WHEN to Perform the Tracheostomy

Ji Y, Fang Y, Cheng B, Li L, Fang X. Tracheostomy timing and clinical outcomes in ventilated COVID-19 patients: a systematic review and meta-analysis. Crit Care. 2022 Feb 8;26(1):40. doi: 10.1186/s13054-022-03904-6. PMID: 35135597; PMCID: PMC8822732.
Link to Article

Trust the Nurses

6. The nurses are providing you the correct information. They’ve been doing this for a year and a half and know exactly what is going on. When multidisciplinary rounds are conducted every day on your loved one, the nurses are part of that team. They hear every word I say and I state the plans aloud every day. It’s an open line of communication between those involved in caring for your loved one. They know what the vent settings mean, they interact with your loved one far more than I do as they’re continuously in the room.

There’s no hierarchy where the nurses can’t communicate with the physicians. They’ve been doing all this for a year and a half. In theory, they could manage your loved one without a physician because they’ve done the same thing over and over so many times. They’re extremely intelligent and capable. Don’t give them a hard time. Many nurses have quit because of the workload and the risk of taking COVID home to their own families while care of your loved one. Be grateful.

Dr. Google isn’t always helpful.

7. We have tried that therapy you’ve read about on the internet in this ICU and it does not work. My trust in the WHO as well as the CDC is broken. I used to hold them up but this isn’t the case anymore and that’s no a political statement. I figured they’d do better since it has been their time to shine. There are treatments out there that I will not name for the sake of being taken off of wherever you’re hearing/reading this that I will bot mention by name. By the way, as a son of Cuban immigrants I do not support a limitation on freedom of speech. That being said, I have tried regimens in the ICU that are considered taboo. They do not work. I’m sorry. I hate to disappoint you. They do not work.

I listened to the Joe Rogan Podcast episode where he interviewed Dr. Pierre Kory and even he states that his recommended therapy will likely not work in the ICU as these patients are too far gone. My sentiments on 8/12/21 remain that we should be treating patients aggressively earlier in the course of their infection. The amount of NIH funded studies on repurposed medications/therapies is laughable but really it should make us cry. I understand your concerns but it’s too late when they’re in the ICU. I personally do not wait for the CDC and WHO to tell me how to practice. I’ve been using steroids since before the RECOVERY trial was published. Steroids work. Tocilizumab to some extent works. The other stuff? Nope. Perhaps in the outpatient setting but not in the ICU.

Clinical Trials

8. I have read that clinical trial/study you are referencing and I’ll tell you why we are or aren’t doing that. Families get surprised when I tell them what table to look at when they ask me for certain therapies such as Remdesivir showing that it doesn’t work on vented patients and may cause harm from the ACTT-1 trial. Those of you who have been on this ride with me over the last years aren’t at all aren’t surprised, though.

It’s my duty to know as much as possible about treatments for patients in the ICU. I don’t take that responsibility lightly. I read every day and those who have been following me for the over 3 years that I have a social media presence will not even doubt that. But there’s a reason why I’m not trying that therapy you want me to try. Chances are it’s because that therapy causes harm and I took an oath to cause no harm.

More Patience.

9. We do not have anything left to offer outside of supportive care at this time. We need to wait it out. Sorry, there’s nothing else we can do to speed this up. We need for the inflammation to resolve. I have trialed giving additional steroids are higher doses and longer durations. This is done on a case by case basis and I talk to the families about it before I do it.

There’s no data to support that I do this and I discuss the risks and possible benefits with the family before I proceed with this. It can open up the patient to multiple complications such as a vascular necrosis in the future. I am not sure whether it works. Sometimes it has improved things, other times it has not. I walk a tight rope with all the other organs when I’m managing these patients. Adding complexity to it is not always tolerated by the patient.

Easy on the Fluids

10. In the words of my mentor @carlkemp4545 we’re going to try to “dry them out like a potato chip”. The FACTT Lite trial showed that conservative fluids are better than liberal fluids in ARDS. That’s not a political statement. Patients end up receiving a significant amount of IV and oral fluids via sedation, analgesics, paralytics if needed, antibiotics, tube feeds, electrolyte replacement, etc. Excess fluids need to be removed. This also comes with complications.

COVID adversely affects the kidneys as well. We try to diurese patients and keep them negative on their fluid balance daily as best we can. That means we try to get them to pee out more fluid than what we give them. The adverse effect we watch out for the most is acute kidney injury (shredding the kidneys) due to overdoing this. I provide the analogy of one walking down the sidewalk and spraining their ankle. The ankle swells like a grapefruit. This is, in an oversimplified fashion, what happens to the lungs. The lung tissue swells and doesn’t let oxygen go into the blood stream and card on dioxide to exit the body.

By limiting the fluid balance of the patient to a net even or negative, we can attempt to limit the size of the grapefruit. I know there’s more to it than that but we’re not speaking to other physicians. We’re speaking to terrified loved ones.

Limited Resources

11. I will try my best to call you, but things are crazy so if you don’t hear from me, take it as it being a good day for your loved one. I will call you myself if something goes wrong. Under normal circumstances, I regularly involve family members at bedside in multidisciplinary rounds. Due to visitation limitations I cannot do this. That means that I have to hit the phone when I have time on patients who are on mechanical ventilation as they cannot speak for themselves. Here’s the recurring theme: resources are limited and I’m a limited resource.

If I am managing 20 patients who are critically ill, I may not have time to give you a call. I wish I can, trust me I do, but I can’t. It’s more pressing for me to save someone’s life than be a formidable public relations representative. If it takes me 30 minutes to sit inside a room setting up a patient on the ventilator appropriately to save their life I will do that over speaking to the family. During this third wave I can count on one hand how many times I have had the opportunity to eat during my shift. That’s no a complaint, I can go without food, but I’m trying to say that my team and I are not watching TV nor chit chatting instead of doing patient care. That being said, it’s my responsibility to let families know when things are going bad.

Primary Contact Person

12. Designate one person as the primary information receiver. Even if it isn’t the spouse. I can’t call multiple family members. It’s not feasible. Hopefully I’ll have time for them to get a quick conference call set up. Some families are amazingly savvy 👍🏼. If there is a family member or family friend who is in medicine and can pass the information to the rest of the family, set them up to be the person I call daily. I cannot call two different people for one patient every day.

Our focus is on the patient and the more time we spend on the phone means less time on patient care. If I were to spend 15 minutes a day on each family for 20 patients, that’s 2.5 hours on the phone not advancing the care of the patient and just being a messenger. This is not feasible. I wish it was but I repeat, resources are limited. We’re in a pandemic that is unprecedented.

How to Stay Involved with Basic Medical Understanding

13. Possibly the best way you can keep up to date on how they’re doing regarding the ventilator is by keeping track of the PEEP and FiO2. The landing zone with regards to this is 5 of PEEP and an FiO2 of 40-50%. The maximum PEEP the vents can do is 20. This isn’t accurate but I have rarely seen someone hit a PEEP of greater than 20 and survive. I’ll go out on a limb and say that I have never seen it.

Many family members take a crash course in ICU management to try to understand what’s going on. Providing them with quantifiable markers helps them keep track whether things are getting better or worse. This helps. I describe PEEP as the amount of pressure to pop open the alveoli and FiO2 as how much oxygen they need to get into the bloodstream. I tell them that we’re all breathing 21% FiO2 for the sake of normalcy.

Proning helps, sometimes.

14. Proning comes with challenges. The PROSEVA trial showed a benefit in prone positioning in patients with ARDS. I have had family members ask me why the patient has not been proned today. One may not like the answer to this but again I will tell the truth. It’s a risk versus benefit issue sometimes. Flipping a patient runs the risk of hemodynamic deterioration. Thing get worse before they get better. That lung that was recruited all of a sudden shifts. The O2 sats fall before they come back up. Everyone’s sphincter tone tightens when proning. The endotracheal tube can come out and the patient will potentially die almost immediately if that accident were to happen. The tension is palpable whenever a patient is flipped in one direction or the other.

Pray for the best, but prepare for the worst.

15. I will do everything in my power to get them through this, but if we need to stop, I will tell you we need to stop and let them go to heaven. My team and I are blessed that God has given us a skill set that allows us to take care of patients and save lives. There are certain things, however, that take place that sadden us because we know that we cannot recover from that fall. We know the patient is inevitably going to die from COVID.

When they takes place, the right thing to do is not do chest compressions on them because that will cause pain to break their ribs not to shock their heart if they were to go into a shockable rhythm such as ventricular fibrillation or ventricular tachycardia. The shock will cause them pain and not change the fact that they will die regardless. If we reach that point, I ask families to make the patients at least a limited code where we will not do things that cause pain before the imminent death. Not only does it pain the patient, but also all of us because we are the ones who feel the ribs being cracked by our compressions and watching patients grimace as they are shocked with 200 joules of electricity.

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