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 is so Rude and Keeps on Telling that My Sister in ICU Wants Only to Die. What Will I Do?
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
asks why the ICU team wean her sister so fast off the BIPAP and pushes her out to the nursing home.
Why Does the ICU Team Wean my Sister Off the BIPAP Too Soon And Pushes Her Out to the Nursing Home?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Vickie here.”
Part 1
Part 2
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 only decision that seemed to make sense in light of my sister’s new status, but with zero time to reflect, was for my sister to go back to the nursing home, spend her 2 weeks to two months there to get Medicare coverage for home care, and then go home.
Vickie based that decision on how well she SEEMED – not on real facts. We worried that the nursing home wouldn’t be prepared or able to handle my sister because only the day before she had been in ICU needing supervision, she couldn’t be turned a certain way or she would go into respiratory distress, she needed a feeding pump and had to be monitored to make sure her breathing and O2 were okay once she had had a certain amount to eat.
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Vickie felt based on the mediocre care she had received before, that they would not be able to tend to her properly. The ICU nurse assured Vickie that she would arrange things and that Rehab hospice would have all the equipment and all the pertinent information when we got there, and if we had any problems, she gave Vickie the phone number of the administrator.
When my sister was discharged that evening, no one at Rehab hospice was expecting her. They didn’t have her room ready. They didn’t have oxygen, so she had to stay on the oxygen from the ambulance until they could arrange for it. They didn’t have a feeding pump. They hadn’t been given any discharge information.
They had had their owners or inspectors or someone there all week, so they told Vickie that they were all exhausted and only had a skeleton crew. Vickie called the number ICU nurse gave, and it connected to the front receptionist who could only tell that the administrator was gone for the weekend.
They didn’t know how much food my sister was supposed to get in her tube or what kind. We needed to explain to the CNA’s and nurses about the ways our sister could be turned and other details, but there was no administrator or DON to tell anything to.
They had no plans for an admission meeting and there would be no one there on the weekend to have one. There was no help available from ICU nurse or anyone at hospital as it was after 5. My sister was now under the “care” of Rehab hospice, and we felt completely powerless. Mountain Peak hospital did a terrible job making sure that my sister’s needs were arranged for upon discharge.
My sister was delighted to be out of the hospital. She was in a fun and feisty mood and we made videos and she joked sarcastically about how the doctors were all wrong and how she was fine and how they didn’t know what they were talking about because “she was fine!”. We laughed and looked forward to her future at home on hospice once we got her on Medicare.
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It took a few days before Vickie could reach a case manager at Rehab hospice and arrange to have a meeting. The day of our meeting, my sister seemed to decline in Vickie’s observation. The next morning she was sent back to the ER. The ER doctor told us it was too late for hospice and he didn’t think she would make it past that day. Thank God we called Platinum hospice anyway, and they arranged to get our sister home.
We decided that even if she died on the way home, we at least could tell her she was going home. She lived 5 wonderful days at home, and we did so much with her and by her side in those 5 days.
After our sister died, the hospice doctor, who never examined my sister, put down her cause of death as congestive heart failure. Apparently this must have come from the records from the hospital. We must point out that we NEVER talked to a cardiologist – not at the hospital or anywhere in my sister’s life.
She never had any previous heart issues. There was never a mention of congestive heart failure prior to coming to hospital. And then they brought it up on day 1! My sister’s caretaker said they also asked about it before when my sister came in with pneumonia, so somewhere in the past the hospital put
it on her record by mistake. Before this aspiration pneumonia she did not struggle with edema or shortness of breath.
No history of high blood pressure, diabetes, high cholesterol. If CHF was the problem then why did we never hear from a cardiologist? We never heard anything about them checking her BNP either.
Also, irregular heartbeat is a symptom of low albumin, so is it possible that this could have been the cause of her heart atrial fibrillation? Vickie’s understanding is that low albumin also puts a person at risk of developing pneumonia or pleural effusion.
We would be remiss if we did not mention that the ICU nurse shined during our experience in your hospital, as did many other nurses. Also, while we did feel some pressure from Dr. David, he was the most informative doctor that we worked with. We wish we had had the opportunity to talk to Dr. David about TPN after we learned about it the evening after Vickie’s talk with him.
The following are the things which we were disappointed in ICU at Mountain Peak Hospital:
1. The lack of compassion and desire to problem solve my sister’s extreme excoriation on her bottom by having wound care and an air mattress until we demanded it.
2. The lack of training for the nursing staff on the proper use of the new high flow oxygen machine and transferring a patient who is on one.
3. The wrong diagnosis of congestive heart failure being brought up over and over again and passed on to hospice, which subsequently ended up causing her death certificate to be wrong.
4. The lack of an ICU specialist.
5. Poor communication between family and specialists. With the exception of the pre-dawn phone conversation with Dr. Ford, we never spoke with a specialist until two days before discharge.
6. The disrespectful, degrading, non-compassionate approach of Dr. Ford.
7. The lack of information to help us get questions answered and make decisions for my sister’s discharge plan. When Vickie had the discussion with Dr. David only two days before my sister’s discharge was the first time we felt like we had actually been given real information to begin to make an informed decision that our consciences could live with.
The main question we did not have answered was what the possibilities were for getting my sister’s protein levels up. To this day we still have not had that question answered. If we had, 1. had that question answered satisfactorily, and 2. been told our sister would likely not live beyond a couple of weeks, the answer would have been clear. We would have taken her home and not wasted precious time at home by going back to the nursing home.
8. The lack of support from social workers/case managers. ICU nurse was only there to ask what we wanted to do. We were offered no spiritual or emotional care. ICU nurse did not know enough about the situation to help us be informed and think through our decision. All she would do in the “meetings” was ask what we want to do, and when we would ask questions, she would explain that she didn’t know because she wasn’t a doctor.
9. Poor discharge arrangements and discharge after hours (twice) when no one could be reached for clarification on orders, etc.
As part of the ICU team, I think it is reasonable to expect that the ICU staff should have been properly trained and equipped to handle medical and practical matters. And from both, I would hope that they would put the care and attention necessary into excelling at the work they do in all areas, including tending to the physical, psychological, emotional, organizational, relational, spiritual, and intellectual needs of their patients and their
families.
We were disappointed at many of these levels, and we thought that it was important to share about our experience.
Sincerely,
Vickie
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Hello Vickie,
Sorry to hear about what happened to your sister. I appreciate you sharing your sister’s story and what has led to her passing.
In my experience, generally speaking, intensive care teams are overtly negative and they often pay a doom and gloom picture for families in intensive care. And if you don’t know how to challenge that, if you don’t know how to ask the right questions, it’s very difficult for you to get the outcomes that you want.
Asking the right questions to the ICU team is so important when you have a loved one in intensive care, and the biggest challenge for families in intensive care is they don’t know what they don’t know. They don’t know what questions they need to ask and worst of all, they don’t know how to manage intensive care teams.
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Most families in intensive care feel completely powerless but if you know what questions you need to ask and if you get professional consulting advocacy from us here earlier at the intensive care hotline, because we understand intensive care inside out, thus helping you very quickly to make informed decisions, get peace of mind control, power and influence in those situations. I always say that when ICU’s know that you have someone involved that understands ICU,
the dynamics change in your favour. Most families in intensive care leave it too late to seek out help and it’s a tragedy.
No one can ever dictate what outcome we want for our loved ones as we feel and see with our own eyes that they have a good chance at recovery. We should never let, even the ICU team tell you any differently no matter how grim the situation is.
Kind regards,
Patrik
