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 Can’t Explain the Reason Why My Sister Has Congestive Heart Failure. Help!
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 in ICU and Vickie is asking why the ICU doctor is so rude that he keeps on saying that her sister wants nothing but to die.
The ICU Doctor is so Rude and Keeps on Telling that My Sister in ICU Wants Only to Die. What Will I Do?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Vickie here.”
Part 1
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.
He asked how long it had been since her brain injury, and Vickie told him almost 8 years. Later, Vickie saw that he put on my sister’s record that she had been bed ridden for 10 years, which was not true! She had her accident in 2012, but she was walking and living a fairly normal life until her hospitalization, and subsequent failed shunt, and later psychosis, which resulted in her being wheelchair bound for 1 year and bed ridden for 5 months.
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We think part of Dr. David’s opinion about what should be done was based on the assumption that she had been “like this” for what he understood to be 10 years. He told Vickie in that meeting that people can live a long time with only partial lung-function, pointing to John Wayne as an example.
He asked what would need to happen for us to feel okay about her leaving. Vickie told him that hospice would let her be on high flow so she would at least need to be weaned down to that. We felt a sense of peace about the conversation because Dr. David took the time to talk compassionately and logically about the situation and give actual information to process (no one had done this before.)
He also was kind to our sister and joked around with her, and they found they had things in common. He treated her as a human being. Vickie felt that she FINALLY had some actual information to base decisions on, but that didn’t mean the final decision was made regarding hospice. We felt puzzled as to why it would be so hard to rectify the situation if malnourishment was the main underlying cause.
After talking with Dr. David, Vickie finally felt like she had a handle on the real issue – malnourishment.
She had the phone meeting with you, Patrik, an ICU advocate for families with patients in ICU. You asked Vickie what her biggest frustration was, and she told you that it was frustrating that something as “simple” as low protein could cause such devastating effects and could not be fixed.
You mentioned that there may be some other ideas to look into to address the malnourishment, and asked Vickie if we had heard about or if they had tried Total Parenteral Nutrition, and we had not. We felt that bringing up your questions with the
doctors is important and that they would answer and consider your questions because this is what you do, after having many years of experience in Critical Care.
Vickie, Joshua and my sister’s caretaker talked about Vickie’s discussion with Dr. David who said there was nothing else to be done and who encouraged hospice, but also considered the talk with you, Patrik who felt that there were still a few more questions to be asked, and how you felt that you would be most helpful to us if you could really know the whole picture.
I told the pulmonologist that we were leaning toward going home on hospice, but at that point I didn’t think there were any other avenues to explore.
After talking to you Patrik, I realized we might have a few more questions that we want addressed before committing to discharge with hospice.
We thought for a moment about if we should throw in the towel at that point, or if we should try one last time to get these other questions answered, and we decided, “This is our last chance. We will have a meeting with you, Patrik and the medical team, and then we will feel certain that we truly did our due diligence, and we can sleep at night with peace that we left no stone unturned.”
We requested a meeting to meet with the medical team. (Is this not common practice to have a meeting with the family before they made life or death decisions?), but Dr. Ford could not be there as he had an emergency.
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We sat in a circle in the meeting room down the hall of the ICU with the ICU nurse, the ICU nurse manager, the case worker, and Mr. Mendez from Risk Management.
Before the meeting, Mr. Mendez came to my sister’s room to get permission from my sister, for you, Patrik to speak with us and the medical staff.
Via conference call, Patrik introduced himself and got an overview of the history, asking a few pertinent questions, including questions about if they had tried certain treatments which we were not aware of, and why or why not.
Our main question was why they had not tried TPN to increase my sister’s protein levels. The ICU nurse and the nurse manager were the only medical professionals in the room, were very professional and courteous, and tried their best to answer the questions, but were limited in their ability to answer.
Then, about 30 minutes into our conference, Dr. Ford stormed into the room. He did not address us or shake our hand. He did not look at us, but stood in the middle of the room and looked at the phone and began to aggressively and loudly interrogated you Patrik.
Vickie and Joshua both took notes that evening just after it happened so as to ensure our memories didn’t fail us when we decided to write this letter, so we quote Dr. Ford here in bold, followed by our response to some of the things that he said.
You have asked Dr. Ford about their current management for our sister’s current health condition and then Dr. Ford yelled at the phone, “What are YOUR credentials?”. As soon as you have started to speak, Dr. Ford interrupted you and you continued confidently stating that you are board certified and had 20 years ICU experience and you are there to help us to get the best care and treatment that our sister deserves.
Dr. Ford then asked you where your experience was from, and you Patrik, an ICU advocate, stated, in the UK and Australia. Then one by one, you have asked the most pertinent questions that made Dr. Ford grew defensive. 1. What could have led to our sister’s Congestive Heart Failure? 2. Why have they not opted for Total Parenteral Nutrition if they are telling that malnutrition is one of my sister’s health problem? 3. What are their next course of treatment plan
for our sister?
Dr. Ford then condescendingly said, “Well, first, I will let tell you MY credentials….” And proceeded to list all his education, awards, etc. He then took over the one-sided conversation, giving his interpretation of what had happened so far. Not ONE time did he refer to my sister by her name, but only as, “that woman” or “YOUR sister.” “I feel like I’m on trial here! We have told YOU PEOPLE over and over again we have done all we can do here.”
He never once actually looked at us. Only the phone. “I am here to inject a dose of reality.” “That woman won’t cooperate with anything we do. She won’t take her meds, won’t do any procedures. She only says she wants to die.”
We both felt very defensive, helpless, and belittled. Joshua attempted to politely defend our family stating, “This is our sister we are talking about. I have never met you and I have never spoken with you. We just want to make sure we have all relevant questions asked and can leave here knowing that we have tried everything and have not left with any unanswered questions.”
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The only time anyone in the family has ever talked with Dr. Ford was on the phone in the wee hours of that morning when he called Vickie. We had never met him in person. No one ever told us that my sister wanted to die or wouldn’t take her meds.
She never told us this herself. We never observed her resisting meds (Meds were given in her PEG tube. And our family and/or sister’s caretaker were very actively involved and were around every day for hours a day.
My sister did tell us she was “tired of doing this,” “tired of being sick.” She even said “I give up” at one point, but the thought passed quickly, as her traumatic brain injury caused impulsivity in speech and short – term memory loss.
At one point when the hospice chaplain, a friend of ours, came to visit her in the hospital and prayed with her, she asked my sister if she wanted to thank God for anything or ask him for anything, and my sister said “I thank God I’m not dead.”
After she was discharged later, she told us she was so glad she was still alive and out of the hospital. Also, often times when they would ask how she was she would say “Great!” This was not a woman who truly wanted to “go home and die.”
“She has the mental capacity to make her own decisions and I can’t force something on her she doesn’t want.” Vickie explained to Dr. Ford that she had not had the mental capacity to make her own decisions. She wanted to drive a car, for instance. When we told her she could not do that, she said “Why not?” We told her she could get in an accident and die, and she said, “I don’t care if I die!”
CNA’s would need to change her briefs after a BM, and she would resist them, and when we would tell her she could get a bad diaper rash, she would say “I don’t care!” Her judgment was like a 3-year old who wanted what she wanted, no matter if it was good for her or not. She DID NOT have the judgment or awareness of future consequences to make major medical decision on her own – only with the support of her family discussing it with her.
We got a brief word in to Dr. Ford and asked him about TPN. All he could say is, “It would take SIX MONTHS of TPN to her levels where they need to be! We realize that my sister was 65 and brain injured, and that her life had not turned out as she had hoped, but God still worked in her life and was drawing her closer to him, and she had new perspective on life.
As Vickie understands it, she thought that Catholic bioethics, through the principle of autonomy, recognizes that the onus of decision making for treatments should be left to the individual or the individual’s representative if they are incapacitated.
Ever since her traumatic brain injury, my sister did not have the mental capacity to weight the pros and cons to make major life and death decisions. This was confirmed at least twice via (A copy of this report can be made available if requested.) For 8 years my sister trusted Vickie
and Joshua, as her powers of attorney, to make good medical and financial decisions for her, so we considered it a grave responsibility.
Patrik advised us that it is only reasonable that a family would receive an explanation as to why a particular treatment (in this case TPN) is not being pursued so they can decide if they think it is best to try the treatment or not. This is not for the doctor to decide unilaterally.
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The length of time it would take to recover is not necessarily an adequate reason in and of itself to deny a person that treatment, so we feel Dr. Ford owed us a more thorough and respectful explanation.
What would the problem of six months of TPN have been? Were there risks? We had no idea, and we would have liked to have known, if for no other reason but to simply have peace that everything had been considered. Yet, he dismissed us. We never had our question addressed before Dr. Forddeclared, “This has gone on long enough, and now I am going to take MY nurse to get out there and do her job taking care of patients.”
Dr. Ford’s entire demeanor and tone were aggressive, angry and condescending. After he left, the case manager and risk manager moved immediately into business mode, as if nothing had happened.
Vickie broke down into tears and said, “Before we talk, I need to cry, and I want you to know that I’m not crying because my sister is potentially dying; I’m crying because of the way he talked to us.”
We felt completely disrespected, disregarded, belittled, and frankly, shocked. We were in one of the most tensed, emotional situations of our lives with one of the most difficult decisions we had ever had to make (but which Vickie signed up for as POA and felt called to take seriously), and we received no kindness, compassion, or even information from her doctor in our ONE chance to talk with him.
After the meeting we were so deflated that we could not think about it anymore. We had been close to a decision about if it was time to take her out and have her on hospice at home, but Dr. Spencer threw us into such a tailspin that Vickie could not think logically.
We spent the night doing other things because our minds were in a state of shock over it, instead of going to see my sister again as we were too emotional to be helpful to my sister in ICU and Vickie couldn’t face anyone there out of embarrassment and hurt.
It was apparent that Dr. Ford and Dr. David would not do any more to help my sister so we needed to decide if she would go home on hospice or go back to the nursing home. We had promised my sister that she could go home if she went on hospice, but since Dr. David told us that she COULD live an extended period of time, we knew that it would be very expensive to pay for full time caregiving at home.
Plus, hospice could not take her on a BIPAP, which she definitely needed (considering just two days before she was at 80% flow). Dr. Ford had just taken her off of antibiotics. We had been told that nursing homes wouldn’t allow feeding pumps, but this was the only way that my sister could receive nutrition slow enough
without going into respiratory distress.
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We had also been told that it was unlikely they would take my sister unless she was on regular O2 cannula. My sister had not even been weaned to high flow yet, much less O2 cannula, but she had shown signs of being able to wean down, so it seemed that she just needed time.
One morning, we woke up ready to tackle the problem and make a decision (probably to take our sister home, regardless of the money, to fulfill her wishes, but also because Rehab hospice would not be able to accommodate her needs of high flow and feeding pump.)
Vickie realized that if we decided that our sister was going to Rehab hospice for Medicare purposes it would be purely a financial decision on Vickie’s part, and that felt selfish. Vickie thought she and her husband might just have to bite the bullet and pay out of pocket for multiple shifts of caregivers at home, but if my sister ended up living several months it would be tough.
Vickie’s husband was out of state on business, so she texted him to ask if we could have a meeting about finances that day to help make the final decision with his input, but she had not yet heard back from him.
Meanwhile, the ICU nurse left a message that Rehab hospice would allow a feeding pump. (We still did not know about high flow). Vickie went to hospital and everything had changed literally overnight! Vickie was shocked when she went to the ICU and were informed that our sister had been moved to the floor.
She was doing better and was now on O2 cannula and holding her oxygen.
Meanwhile, that same day, our sister’s caretaker (and like a daughter to her) bumped into the ICU nurse in the parking lot. ICU nurse chased her down and apologized for how Dr. Ford treated us and told her that she wanted her to know that she didn’t feel the way he did and that he didn’t represent everyone else there.
She also said the charge nurse was “mortified” by the way he acted. When Vickie found my sister’s room on the floor she didn’t even have a moment to talk to my sister before ICU nurse and Mr. Mendez descended upon her. (ICU nurse must have had the nurse call her the minute she walked in.)
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Vickie was backed into a corner as ICU nurse told her, my sister had no more need for hospitalization and insurance would no longer pay, and asked Vickie to tell her where she would be discharged to that day. Vickie desperately wanted to talk to someone to think through all the confusion about the money, the Medicare, how long she would live, the feeding pump, her wishes, the high flow (which was now oxygen cannula).
But they only looked at Vickie with a glazed look and no response, simply waiting for Vickie’s answer. Vickie again broke down in tears and told them she felt like a gun was to her head and she was so confused because everything changed overnight so it was all new information!
Vickie sensed that they had made our sister “look good” so that we would have to leave. Because she “looked” good Vickie rethought taking her home because now she wondered if it would be too risky to lose her Medicare because she seemed so miraculously well that Vickie thought she indeed had maybe overcome the illness and would be okay, and then we would really be in trouble financially.
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
