Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if
you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from our readers and the question was
The ICU Doctor Says He is an Advocate for Dad, So Why Is He Suggesting Withdrawal of Treatment Now?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Vickie as part of my 1:1 consulting and advocacy
service! Vickie’s sister is critically ill in ICU and Vickie is asking why the ICU doctor can’t explain the reason why her sister has CHF.
The ICU Doctor Can’t Explain the Reason Why My Sister Has Congestive Heart Failure. Help!
Hello Patrik,
I find it difficult to write this letter, and I delayed writing it sooner after our sister’s death, as the feelings were too raw. This period was followed by the pandemic, of which I used as an excuse to avoid composing it.
However, as I write this, many months have passed since our sister’s death and it seems that it is time to reach out to share about our experience.
A few issues will be brought to light, with the focus of the letter being primarily in regards to Dr. Ford, one of our pulmonologists when our sister was a patient at one of the hospitals here, from 5/15/2020 to 5/30/2020. She died in her home July 20, 2020.
My sister acquired a traumatic brain injury and had ups and downs, including receiving a shunt for Hydrocephalus. She gradually got to where she was wheelchair bound in 2018 and had a feeding tube inserted at a Medical Center after a bout of aspiration pneumonia in spring
2020.
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Following her pneumonia, she went to a rehab healthcare and was making improvements through their therapy and seemed to be doing well, so we decided, to have her live at Rehab long-term. My sister developed severe psychosis and her limbs were stiff and was difficult to get out of bed, so the staff
mostly left her in bed unless we came and requested otherwise, and they would not let her leave her room due to her psychosis.
Her swallowing did improve, and she worked up to solid food through speech therapy. However, she started showing signs of aspiration again and they did a swallow study which confirmed it. Shortly thereafter she was admitted again to Mountain Peak Hospital. During this first visit at the hospital she was diagnosed with aspiration pneumonia and a severe UTI. She was treated and returned to Rehab Healthcare.
My sister worked with a substitute speech therapist who immediately put her back on solid food. Shortly thereafter our sister aspirated again and was readmitted at Mountain Peak hospital and was subsequently released in the middle of the night on May 2020.
I visited our sister and she looked absolutely terrible. She was on IV antibiotics and an oxygen cannula, sweating profusely, and breathing at 50 breaths per minute. The rehab healthcare had been watching her all day and weren’t sure what to do. She told them to call an ambulance.
This time I was in the ER with her (in prior ER visits her caretaker had been with her until one of us could get there later.) The ER doctor mentioned, to my surprise, that my sister had a history of Congestive Heart Failure and Atrial Fibrillation. We had NEVER been told
that from her previous hospital stays or at Rehab healthcare, or in the 10 years prior, despite being extremely involved in her care, her children, and I being her medical power of attorney.
I told them that must be wrong or else she was not informed. My sister was admitted to the floor (or ICU – can’t remember which at first) with a diagnosis of pleural effusion. Dr. Juvy ordered an ultrasound of my sister’s heart which clearly showed no CHF, so Dr. Juvy said she would have it
taken off my sister’s record. We felt relieved when she told us that, but I noticed Dr. Juvy didn’t seem to feel the same way and wondered why.
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Later when we were discussing, yet again, what the cause of my sister’s pleural effusion was, she mentioned “If it were her heart we could treat that.” So then we understood that ruling out CHF meant they still did not know the cause, and that was disappointing for the doctor because it didn’t explain the reason that her patient’s lungs were filling up with fluid, even after they had tapped and drained one of my sister’s lungs.
It turns out that my sister was indeed having episodes of A-fib. This was new, and I was told it was mild to moderate and not the cause of her problems and could be treated with medication. However, the medical team found that anytime they tried to feed her in her PEG
tube, if they got above a certain amount, my sister would go into respiratory distress.
Meanwhile, my sister had EXTREME excoriation of her bottom. Her main complaint for days was that her butt hurt. We begged for help and it didn’t seem that anyone was doing anything. Of course, the medical staff was primarily concerned with my sister’s breathing, but whenever they asked my sister if she was having trouble breathing, she always said no, and her chief complaint was being in pain on her bottom.
Finally, I requested a meeting with the nurse in charge, and she was great. We felt like we were heard for the first time on this. They got my sister an air mattress. However, when they transferred her to it, they kept her high flow tube in her nose but turned off the machine. The steam condensed, and the water poured down into her nose and literally drowned her.
She was not able to breathe and her vitals went crazy. After they got her settled, they later told me, it was a new system and they hadn’t had training on it. This seems irresponsible. We and the medical team spent the next two weeks trying to figure out why my sister wasn’t absorbing the fluid.
One weekend, I went home to be with her husband and children, and in the wee hours one morning, while it was still dark out, Dr. Ford woke me from a dead sleep. He told her that he came in to do another tap and that our sister refused and told him to let her sleep.
He also said her poor nutritional status kept her from being able to absorb the fluid and that she had diastolic dysfunction so there was nothing else he could do. This was all new information, and I could barely form a thought or process what he said in the pitch dark and half asleep, so she was unable to formulate any questions for Dr. Ford at the time and went straight back to sleep. It was not the most effective conversation since I was so dazed and
discombobulated.
Upon further reflection when she was awake, she thought through the conversation and arrived at some potential clarifications and questions, but the opportunity was gone. As for my sister turning down the draining of the fluid – our sister was not a morning person, and because of her brain injury she was impulsive and incapable of weighing consequences and making decisions for herself even when wide awake.
If she, like I, was awoken in the dark and told they were going to stick a needle in her lungs and drain the fluid, of course she would say no and to let her sleep! Perhaps with her family there and in the day time we could have weighed the pros and cons together and made a more meaningful decision that was not driven by my sister’s desire to sleep.
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Joshua and I realized that hospice was a very real possibility, so we travelled back to the hospital that day to gather more information and assess the situation to help us discern next steps. This was the one and only time either of us ever spoke with Dr. Ford until the day before our sister was discharged.
We had, at that point, already had one meeting with Platinum Hospice in case our sister got to the point where she wasn’t going to recover, so we began researching more about what it would take to get our sister home on hospice (We had promised her we would take her home to her house if she was ever at the end of her life) and if we had exhausted all possibilities for recovery.
Platinum told us that on hospice my sister could be on high flow during day and BIPAP at night, so we needed to see if she could get down to high flow during day so that we would not be hastening her death.
The medical team was trying on and off and my sister was doing okay, so we held out hope that she would eventually be off of it so she could go home comfortably. We had no idea how long our sister would live, so she would need 24-hour custodial care, as well as nursing care for her meds and PEG tube, and we needed to see if we could get financial help from Medicaid if this would be long term.
On Friday, we found out that my sister could not go directly from hospital to home and carry over her insurance which she had been receiving while in the nursing home. If she went home, she would lose Medicaid status for home or nursing home care. The only way to retain it was to go back to Rehab first and start the process to get Medicaid at home, which Medicaid said would take about 2 weeks to 2 months.
We didn’t want to take her back to Rehab because of our promise. If she was going to die in a few weeks then it would be financially and practically feasible to take her home, but if she ended up living a few months or even more then it would not be practical since she would need 24/7 care.
Without knowing how long our sister might live, we were stuck between a rock and a hard place and needed some time and information to figure out the best course of action. We prayed fervently for wisdom! We realized that my sister had not finished her course of antibiotics, so we decided we should see if she could get off bi-pap during the day and also wait until she had finished her antibiotics because this would be her last chance for IV antibiotics if she went
on hospice.
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Also, we wanted to make sure we had not left anything on the table as far as options that could only be acquired in a hospital setting. We had asked for results of a lung x-ray to see if there had been any improvement, but we could not get the answer to that question.
I had researched pleural effusion and had asked multiple people if she had transudative or exudative effusion since she had learned that the way to treat certain/most pleural effusions is to address the underlying condition.
No one that we had access to speaking with knew the answer to our question on that, or they didn’t answer us if they did. All we understood was that pneumonia was being addressed with IV antibiotics, so we needed to stay the course to see if they would help.
During our sister’s stay we saw many hospitalists. We were told by some, in particular Dr. Grady, that they were still looking for options and were going to keep trying and to be patient. Dr. Grady said, “It will take a REALLY long time. It will seem long to the doctors. It will seem even longer to the patients. And it will REALLY seem long to family. So be prepared for a long haul.”
This gave us perspective that we shouldn’t give up until we had given it enough time and exhausted all possibilities. Other doctors told us “there was nothing else they could do” and to consider hospice. We knew that on hospice my sister would not be able to have a BIPAP, and she was holding her own with a BIPAP, was alert and conversant and actually pretty comfortable and happy when we were there, so the idea of removing it seemed cruel and unethical.
She got bored and lonely when we weren’t around, and she was always been feisty so she would definitely tell them what she thought when she was frustrated or couldn’t be bothered! As a faithful Catholic and my sister’s medical power of attorney for 11 years, I prayed and researched a lot about the ethical questions that we were facing.
I felt that we had a moral imperative to do nothing to hasten our sister’s death by removing her from the bi-pap unless we knew with certainty that we had exhausted all options, especially if my sister was not in pain. Our sister suffered a lot of loss during the past ten years of her life.
However, this was not reason to “let her go” as a way to be “compassionate,” if there was something else that could be done to help her improve and be able to return at least close to her baseline, especially considering that she didn’t complain of any discomfort that was unusual for her.
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When anyone asked if she was having trouble breathing she said “no.” She had the appearance of labored breathing, and her breathing rate was high if she was off the BIPAP (sometimes she could use high flow O2) or right after receiving food. But she never complained to us of pain or feeling like she couldn’t breathe.
We had many conversations with her where she talked about wanting to live and wanting to be out of the hospital. She was “sick of being sick” but she wanted to get better, and as long as she was with people she was content and peaceful.
Because so many doctors were telling us they just didn’t know why she wasn’t absorbing the fluid, especially since she did not have CHF, of course I took it upon herself to study up on the different types of pleural effusion. Because no one would or could confirm for her which type she had, I tried to figure it out herself.
She also reached out to various medical professionals that we know (as well as spiritual advisers/priests/Catholic bioethicists) to get their advice and guidance about how to proceed. In my sister’s last week at Mountain Peak Hospital, I became aware of you Patrik, of intensive care hotline, advocating for families inside intensive care.
On Monday night, she set an appointment to talk with you on the phone to explore if there were any other options to consider. That night my sister crashed and they had to turn her BIPAP up to 80% and wanted I to say if she wanted her intubated if she got worse, so we knew that the ICU doctors were feeling
pressure.
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A couple of hours before her appointment with you Patrik on a Tuesday, Dr. David came into my sister’s room to speak with me. He told me that my sister had transudative pleural effusion, which can be caused by one of three things:
1. Congestive Heart Failure, but that was ruled out. I asked about diastolic heart dysfunction, and he agreed she had it and that it might contribute, but “it wasn’t the main issue.”
2. Kidneys – but he said her kidneys were functioning okay.
3. Malnutrition – By process of elimination, and considering her albumin levels were so low, this was the primary cause.
He said that he had been telling Dr. Ford that this type should not be tapped because it pulls out protein which exacerbates the problem (Why did Dr. Ford attempt to proceed anyway? – and without asking me or her family?! We are glad my sister said no!) Dr. David admitted to me that he was puzzled about why my sister could not take more food. He asked where she had been living and if they fed her okay.
He said he does not like bolus feeds because it is too easy for nurses to sign off that they fed them when they did not. He said she had been malnourished for a long time. He was direct, stating that the reason she was not getting better was because of her malnourishment.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
