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If you want to know what to do if you have your loved one critically ill in intensive care and you don’t have access to the medical records and how to get information, stay tuned! I’ve got news for you.

So today, I have an email from one of our clients who doesn’t have access to the medical records yet but has some information. Here is how we break the information down while she’s getting access to the medical records. It’s really important for you to understand, as much as possible, when you have a loved one critically ill in intensive care because if you don’t, you’re simply fighting an uphill battle. Because the biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights and they don’t know how to manage doctors and nurses in intensive care.

So, let’s get into the email.

“Hi Patrik,

I’m just giving you this report in this email. I just got another call from one of the other doctors in ICU. They are really pressuring me. The doctor says my husband has a life-threatening hemorrhage. His hematocrit is 17, it was 23 yesterday, and 26 the day before. They are giving him a unit of blood now, says he will need more. He also says that they need to do an embolization procedure but could have problems finding where he is bleeding from. They said his blood pressure was low. I asked why they had him on 5 blood pressure medications yesterday if it was so low. He said, ‘Well, yes, that could have contributed to low blood pressure, but the bleeding is why it’s low now.’ He again pushed for a DNR (do not resuscitate).

My husband developed a spontaneous bleed when they started anticoagulants. So, he’s suggesting a conservative approach. Give blood, stop anticoagulants instead of embolization procedure. He could have another heart attack from this and they want to make him DNR (Do Not Resuscitate). I would appreciate if you could call me ASAP (as soon as possible) after looking at everything. I will sign up for more consulting time as needed,” which is something the client has done. I’ve already spoken to the client.

So, that’s just one part of the email. Let’s just break this down.

Yes, if hematocrit is low, it’s likely that hemoglobin is low, but the hemoglobin is really what drives the blood transfusion; it’s not actually the hematocrit. I know that her husband had a unit of blood. In terms of embolization procedure, well, after talking to the client, they don’t even know where the bleed is coming from. So, therefore, an embolization procedure is definitely not an option at this particular point in time. In the combination of anti-hypertensive medications and a bleed, it is always causing low blood pressure. Again, if you don’t know what you don’t know, you don’t even know what you’re looking for.

I’ll come to the comments about the pressure on making our client’s husband DNR. I’ll come to that after I’ve given you the full picture of what’s really happening.

Then, the email continues:

“I’ve sent you some pictures of the ventilator, monitor, and medications that he’s getting.

My husband was admitted to X hospital on the 10/08/2024, he had shingles for two weeks, falling down for past two days, headache, and then we had to call the ambulance. He had seizures in the ER (emergency room), and they asked me to put him in a medically induced coma, they asked me for permission. But unfortunately, no one even attempted me to call me until the next day. I found out from the RN (registered nurse) that they didn’t put him on antivirals until Day 3.

Only on the 10/09/2024 was I notified with everything that was happening.

On the 10/14/2024, my husband had cardiac arrest, brought back in five minutes. The ICU nurse told me his electrolytes may have been off when I asked why. Also, found out later they were doing a breathing test for the first time. He got tachycardic. They are much more careful since then to watch his heart and breath rates when doing this.

I just had another call from one of the ICU doctors who is once again doubling down on me to make my husband a DNR. The doctor rotated in on Sunday, so this is her 6th day on the case. She said she sees no improvement since she came on. They were pressuring me what would my husband want. ‘This is not about what you want,’ she says. This is about my husband’s quality of life, and could he live with it. I told the doctor to stop with the fear tactics. Once again, I am well aware, I need more time to make an informed decision. She clearly doesn’t like it that I’m not taking her word for it. She is worried my husband will be institutionalized for the rest of his life. She said, if my husband had another cardiac arrest, would I allow DNR? I said, no. Then on with a guilt trip, I am now getting texts from my siblings also trying to pressure me.

This is today’s update from one of the doctors. So, my husband developed blood clots in his arms, and they have him on anticoagulants, Lovenox. He now has a bleed, which they haven’t located yet. They are giving him blood today. They are doing a CT (Computed tomography) scan. His white cell count had improved, somewhat down to 22,000 now, it is at 36,000, which is very high, and it implies that there’s an infection. My husband also had a previous UTI (Urinary Tract Infection) which I understand cleared up. They have not been able to find the source of this infection. Could it still be from the encephalitis?” Yes, absolutely. It could still be from the encephalitis. But you also mentioned down in your email that there’s potentially a pneumonia. The reality is that someone in ICU is at high risk of developing an infection one way or another.

So, the email continues.

“So, the bleed and the infection and the increased white cell count were the reasons the doctor were pressuring me again. The doctor told me her role is to tell me what’s happening, and my role is to do what my husband would want. And I told her I’m doing research, I need time to make a reasonable informed decision, and I won’t be pressured so I suggest to stop now. It’s been really bad since the day after my husband had the cardiac arrest. I spoke with a cardiologist three days ago, and my husband’s heart rate is back at baseline. He feels he’s at minimal risk for another cardiac arrest and feels he was doing well overall. His left ejection fraction is back to 50%. He was diagnosed with a stress induced cardiomyopathy, which I know can heal in a few weeks, and that also means that probably the ejection fraction was down a fair bit earlier when your husband had the heart attack. We were also told he’s in heart failure that it is no longer true. Of course, they didn’t voluntarily let us know these things, I asked! This doctor also told me his blood pressure was low today. I said, I’m aware you have him on 5 high blood pressure medications. She added two more in yesterday that my husband had been taking at home. The RN said the goal was to keep his blood pressure below 150 systolic. They restarted spironolactone 25 mg yesterday, also on amlodipine 10 mg, hydralazine 25, 8 hourly, losartan 25 mg daily, metoprolol 50 mg every 6 hours. That’s a lot in terms of anti-hypertensive medications, and no wonder that with having the bleed and those anti-hypertensives, that blood pressure would have dropped to a very low level. I’ve seen in one of your pictures, blood pressure was 78/40, something very low.

As you can see in the pictures I sent you, his blood pressure was very low last night. The bells chimed and the nurse had to give him something to bring the blood pressure back up. All these blood pressure medications make no sense to me. It does make sense if your husband had high blood pressure beforehand and that they were continuing it in ICU to keep his blood pressure down. However, it’s also important to note that your husband is on propofol quite a fair bit actually, and one of the side effects of propofol is low blood pressure. So, all of that is important to know.

Then, I also found out last night that they didn’t start him on acyclovir until Day 3. They also didn’t give him TPN (Total Parenteral Nutrition) until about Day 11 to 12. I kept asking how can he get well without nourishment. My husband has kidney failure; however, I am told his kidney is functioning well.

Now, in regard to the TPN, you need to find out why they were not giving him any nutrition because it sounds to me like he had no nutrition until Day 11, but you didn’t know why. So, you’re absolutely right. How can he get well without nourishment? He can’t. So, you need to get on to this and find out why he hasn’t been having nutrition. That’s negligence, by the way. Early feeding in ICU has shown improved outcomes for patients.

Now, the email continues.

Per last night, fever is 38.4 °C. He has been running a low-grade fever continually since the diagnosis with pneumonia which is now clearing up. Apparently, his last CT scan of the lungs looks good, I am told. Lung secretions have been white or clear recently. He’s still on anti-seizure medications. He has not had any more since in ER, and has had 3 EEGs (Electroencephalography)  now, not showing any seizure activity and swelling is down in the brain. What other info should they be telling me from the EEG? From the EEG, what has the brain activity been? Is it normal brain activity? Is it seizure brain activity? Is it diminished brain activity because of potential brain damage? The doctor said she doesn’t think my husband can have a good recovery and would likely be institutionalized for the rest of his life.

This morning, venous blood gases were good per nurse. No ventilator changes, on anti-seizure medications, Keppra 1250 mg, two times per day or every 12 hours, and valproic acid, 500 mg, every eight hours. On cefepime 20mg, last dose. On acyclovir, started on 10th, propofol for sedation continually. They gave him fentanyl for spontaneous breathing trial and giving PRN (as needed).

He was able to breathe on his own for 1 to 1.5 hours yesterday, has been up to three hours previously, and as low as 5 and 10 minutes, not consistent.

Please tell me what other info I can provide you with. The nurses are good at answering my questions. I would like to have a consult with you ASAP, which we’ve had. I will be signing up here momentarily. Please let me know when you are available.” We’ve done that.

So, what you need to find out is obviously where’s the bleeding coming from, why are they not stopping the propofol. You did mention when they stopped the propofol, he apparently gets agitated a fair bit. Therefore, if he gets agitated, what else is happening? They need to do a CT scan of the brain or a MRI (Magnetic Resonance Imaging) scan of the brain to rule out any brain damage. Also, they need to give you access to the first MRI on Day 1 or Day 2, which you haven’t seen yet. Furthermore, they need to start talking about a tracheostomy and not about DNR.

If your husband wants to live, which it sounds to me like he wants to, then they need to do a tracheostomy. It’s not up to them to make him DNR or pressure you to a DNR and talk about end of life. What’s the hurry in killing someone? What’s the hurry about end of life here? What’s the hurry? Those are questions you need to ask in all seriousness.

So, I hope that helps and answers all your questions.

I’ve worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over 5 years. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can confidently say that we have saved many lives with our consulting and advocacy. You can verify that on our testimonial section at intensivecarehotline.com. You can verify it on our intensivecarehotline.com podcast where we have done client interviews. You can watch videos there and podcast interviews with clients that verify the work that we’ve done for them and with them.

We have helped hundreds of members and clients over the years, like I said, help them to save lives, change lives to the better, stop intensive care teams from withdrawing treatment prematurely and unreasonably. That’s why we created a membership for families of critically ill patients in intensive care. You can become a member if you go to intensivecarehotline.com if you click on the membership link, or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in the membership area and via email, and we answer all questions intensive care related. In the membership, you also have exclusive access to 21 eBooks and 21 videos that I have personally written and recorded. Those resources will help you to make informed decisions, have peace of mind, control, power, influence and that will help you get best care and treatment for your loved one always.

I also do one-on-one consulting and advocacy with you over the phone, Zoom, Skype, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I handhold you through this once in a lifetime situation that you simply can’t afford to get wrong. I also talk to doctors and nurses directly, and I ask all the questions that you haven’t even considered asking but must be asked when you have a loved one critically ill in intensive care.

I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

All of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

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Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.

Take care for now.