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
My Son is in ICU with a Breathing Tube in Place. Why Does the ICU Team Need to Reduce the Sedation During Ventilator Weaning?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Thea, as part of my 1:1 consulting and
advocacy service! Thea’s mother is admitted to the hospital with an infection and she is asking why do the doctors keep on convincing her to put her mom into a “Do Not Resuscitate” status?
My Mom is Admitted to the Hospital with an Infection.
Why Do the Doctors Keep on Convincing me to Put my Mom into a “Do Not Resuscitate” (DNR) status? Help!
Dear Patrik:
I am wondering if I can engage your help to make sure I provide the correct advocacy for my 98-year-old mother who is in the hospital for Urinary Tract Infection (UTI) with sepsis. She is not in the ICU.
Mom has controlled Congestive Heart Failure and some dementia. She has had past hospital stays for Pneumonia in January
2016, for Urinary Tract Infection (UTI) in May 2016, for Cellulitis that turned to Sepsis in Nov 2016, and resultant volume overload that caused hospitalization for Congestive Heart Failure in Dec 2016. And was just admitted on Tuesday, March 6, 2018 for Urinary Tract Infection (UTI) and sepsis. The hospital feels like she has not been there in a “long time” which is good.
She lives at home and has excellent caregivers providing 24-hour care. I manage the caregivers and their care. She has five children and we help too. She has a pacemaker (no defibrillator & just changed out (for battery) in August 2017.
She has atrial fibrillation and Congestive Heart Failure (CHF). She has no pain and takes one Tylenol few times a year for pain or fever. The prior infections and hospitalizations have weakened her so before current hospitalization, she walks about 50 steps a day with 100%
assistance from caregivers so she doesn’t’t fall.
She has a lot of skin tears just because skin is so fragile (and we are VERY careful) which makes for lots of bandages showing all over. We keep her bedsore free except this is the one exception, she has one now that it ugly but we go to wound care for the skin tears and they will help with this bedsore too.
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On, Tuesday, March 6, her temperature dropped to 93.6 (from her normal base temperature of 96.7). Blood pressure was 90/54 which fluctuated as low as 79/xx since hospitalized. The lactic acid test at ER was 2.3 and fluids were started. Blood culture has come back with gram-negative
bacteria. Her BP has stabilized between 94/xx, and 120/60 last night and 100/48 this morning and her normal temp of 36 degrees Celsius this morning.
They started with Rocephin and Azithromycin and now giving Vancomycin IV, and Cefepime, and added Piperacillin yesterday. She is very sick, but smiles some and yesterday she said “I am hungry”. Her head hangs a lot. Even before the ER, she must have been sick for several days because she wasn’t hungry and ate only 50% for two days.
She can barely swallow now, hangs her mouth open when offered food but wants it. She had dysphasia in prior hospital stay but improved at home till she could eat all regular food safely again. She loves to eat. We asked for a nasal gastric tube to feed her. They put one in yesterday and fed her
and it went well. Speech pathology came and recommends tube for now.
The nurse told me what we need to watch, for now, is “kidney perfusion”. And nurses have been hanging their heads unhappy with the urine output. She is producing a low amount of urine. The colour is nice (like a lightish-amber beer).
One 8-hour shift was 145cc output. Mom is 138 lbs. She is on none of her Congestive Heart Failure (CHF) meds yet except digoxin and the nurses are a little grim about the urine output but the doctor hasn’t mentioned it to me yet at any morning rounds. I have complained of seeing wet on pad (they really don’t believe me).
Today the nurse assistant saw it with our caregiver and they did order and put in a new catheter. (So maybe some urine has been going out on pad after all!!!). I see doctor on rounds each morning (except today). He has not threatened me with “low perfusion” or any discussion of low urine output. I did tell him
that the catheter was leaking on the first day and he said they all do a little.
I have heard the nurses say that the Dr. says that she is dehydrated, so she is continuing IV fluid and can’t give any Bumex yet until hydrated. So of course she is loading up with edema. Mostly on the bottom side from lying down and thighs as lowest gravity point. We are elevating one leg at a time to try to help edema run out of thigh. They said 2 and 4 pitting edema. I don’t know the measures but the thighs are big. Last time they sent her home this way
(after sepsis) with volume overload and she didn’t fit in her wheelchair.
Honestly, just between you and me, we have been noticing at home that the Bumex doesn’t seem to work as good lately. In fact, we even got a different generic brand recently hoping it was the generic brand. With our recent visit with the cardiologist, she said she could stop her Altace (about a month ago) didn’t want low BP fall risk. And in hindsight, output seemed worse after she quit Altace. (Could be coincidental).
MY MAIN QUESTION:
It has been absolutely horrible getting her care and I have done it ONLY from my learning from your website and your case emails that I follow. She is NOT in ICU nor has she ever been. Currently, she has improved and each day on rounds, the Dr has said: “she looks better today”. Honestly, it doesn’t show too much, must be talking about labs. Her oxygen is 100% on 1.5 L, blood pressure fluctuates between 94/54 and 120/60 now, and heart rate is between 65 and
85.
On the first Doctor’s rounds (caregiver there), Dr. said she has low BP (it was dipping to 79 at lowest), low temperature (was 93.6), and she is 98. I’ll put her as a Do Not Resuscitate (DNR) (everything except Cardio-Pulmonary Resuscitation (CPR) and Intubation. I was called to confirm and I said she is full-code
status.
Rounds Dr. called me to convince to Do Not Resuscitate (DNR), her Internist called me to convince to Do Not Resuscitate (DNR), but Dr. did change it back to full-code for me. Soon after that she started getting excellent care and still is. But it is hard to keep Do Not Resuscitate (DNR) away!!!
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I rode with Mom in the ambulance and have been with her ever since and no less than 10 people have accosted me to put her on a Do Not Resuscitate (DNR): nurses, doctors, administrative. And the subject of Do Not Resuscitate (DNR) keeps coming up. There were 40 beds needed that day from ER. There were 15 still needed when Mom got hers.
I think only because she has a respected Dr. but he doesn’t do rounds anymore (little older) so he has to rely on his partners to follow Mom in hospital. (Probably does not want to burden them?) In the past, he has stuck us with hospitalists and has been very “dangerous” care. It has been excruciating listening to how I am making my mother suffer. Rounds dr. wouldn’t do that to his Mother. He even said, “there is someone down in ER with a heart attack and needs that bed”.
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What actually horrifies me equally is that I feel maybe I should be listening and cutting her care? Before this admission, she doesn’t talk much, she knows who I am and is always happy to see me. Her caregivers love their job because she is so lovely and thanks them every time they do anything for her. They love their job.
Mom is so nice to them. She loves to eat and eats a HEALTHY diet, no junk.
When she had her first Urinary Tract Infection (UTI) about 2 years ago, her Dr. said, “you should consider Hospice. It’s going to be one infection after another”.
And it kind of has been. He just doesn’t want to follow her or have her, as patient because he has to put her on his partners in hospital is what I’m thinking. She wants to live. And asked “Is this the hospital? Am I going to die?” and was horrified when she figured it out. Last time she was in hospital, they let the hospitalists care for her and it was AWFUL. Kidneys were damaged then I’m sure getting that overload off.
So my main questions are these:
1.) Please help me continue to keep fighting them by helping me know what might be coming next. (I left Friday after rounds because I feel they won’t mess with us too much over weekend and caregivers will be there and report to me 24 hours coverage.)
2.) What do I need to do if, in fact, her urine output is not enough for kidney perfusion? She is not back on any Congestive Heart Failure meds yet except digoxin. Will her Congestive Heart Failure meds (Coreg 6.5mg twice a day, and 0.5 Bumex every other day) help enough to make more
output?
3.) Is the “low urine” real or perceived trouble for her?
4.) How do I continue to keep the Do Not Resuscitate (DNR) away?
5.) More appalling why do I feel like they are pushing me to cave, she has nothing but some infections? They have antibiotics for that!!! She has no pain. Except being sick from infection? But, I know she is OLD.
6.) They make me feel “unsophisticated” and “dirty” for wanting to keep her alive and get her proper care. She believes in care and always has. Always took great care to go to Drs. in her life even PAP at GYN each year, and for us as kids. I have 4 sisters that will support me but want to stay away so they won’t be accosted by Do Not Resuscitate (DNR) requests because they don’t study this stuff and don’t like hospitals. When they visit, they are 100%
supportive but one of them thinks “comfort care” is good in general and has mumbled it in front of her caregivers once before in the hospital. She and I don’t talk about this much right now.
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I have returned to my home for a 24-hour respite with 24-hour caregivers there at her bedside. We are texting every time. But I will return probably for 7am rounds (unless I strategize to skip one). But I feel if Dr. is there, family needs to show at that time too, to let Dr. know that we are 100% in on this 98-year-old cure!!!!
Please let me know if and how I can engage your help????
Thank you so much for your help already!!!! I haven’t asked for Do Not Resuscitate (DNR) policy to read yet.
Thank you,
Thea
Hi Thea,
It’s Patrik here from intensive care hotline. Thank you for contacting me and thank you for using my one on one email consulting advocacy service.
So what I’ll do, I had a read through your email and I’m on now going to address your questions in particular. I’ll just read out these questions before I answer them.
So your first question is
“Please help me continue to keep fighting them by helping me know what might be coming next. You left Friday off the rounds because you felt that won’t mess with you too much over the weekend and can’t give us. We’d be there and report to you 24 hour coverage”.
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So I can definitely help you fight them. The fight is not a good word, it’s much better to say, I’ll help you get what you want for your mother!
Whatever comes next doesn’t really matter what the situation looks like. You know, I have so much experience, therefore I can guide you in one way or another, but I clearly understand what you want and that’s for your mother to leave the hospital and get the best care and treatment and I’ll come to that.
So your next question is what do I need to do?
If in fact, urine output is not enough for kidney profusion, she’s not back on any Congestive Heart Failure meds yet, except Digoxin, will her Congestive Heart Failure meds, Coreg 6.5 mg twice a day and Bumex 0.5 my every other day help enough to make urine output?
So Thea, this is the issue with urine output. Urine output is not a result of, well, urine output is a result of kidney perfusion, but kidney perfusion is a result of sustained blood pressure. So you’ve mentioned that initially your mother’s blood pressure was pretty low because of the infection, so
they brought it up. So kidney perfusion really needs to be driven by sustained blood pressure and that needs to be really above 90 to 95, systolic or above 65, mean blood pressure. So the Digoxin will definitely help because the Digoxin improves the contractility of the heart.
The Bumex will help as well. But keep in mind your mother is dehydrated from what you’ve said. So that means even if she has high blood pressure, she also needs some fluids to get the kidneys perfused. It’s a tricky one because on the one hand you want to keep the heart and the lungs dry so they can cope. But on the other hand you need kidney perfusion, so it’s a fine line between a sustained blood pressure and not to dehydrate her.
So she has a blood pressure. She has fluids that’s actually perfuse the kidneys. So with low kidney perfusion you know, she won’t make much urine, that’s the bottom line. So are the kidney issues real or perceived for her? Well, it’s probably real at this stage, it’s not perceived because you don’t want to get the kidneys into shutdown mode. Next, how do you continue to keep the Do Not Resuscitate (DNR) away?
As you know Thea to keep the Do Not Resuscitate (DNR) away, it’s as simple as you keep telling them, you want to keep the Do Not Resuscitate (DNR) away and that you want for her to leave the hospital alive! It’s something you’ve made crystal clear to them that you want for her to live it. Something she has voiced. So you don’t need to go overboard. You just keep telling them, look, this is what I want for my mom and this is what she wants, and if they don’t
listen to you, then you can go back and ask for the hospital policy, but it’s probably not there yet to ask for the policy.
Just be persistent with your message and be persistent with pointing towards what your mother wants and what you want as her next of kin or medical power of attorney. So then the next you say “more appalling, why do I feel like they’re pushing me to caving? She has nothing but some infections. They have antibiotics for that. She has no pain except being sick from infection, but I know she’s old so you know, it is appalling if they are pushing you to
cave.”
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But again Thea, you got to ignore that. Yes, she has infections. You’re treating them with antibiotics. You know, she’s not in any pain. You know, she’s sick, she’s getting the antibiotics, she’s in hospital, you’re doing all the right things and age is not a factor. You know your mother has her brains and her wits together. You have your brains and your wits. So again, same with the Do Not Resuscitate (DNR).
Just keep going, keep going back to saying, look, I want full treatment for our mom except for cardiac compressions and intubation. Everything else I want for her.
Just keep repeating yourself and make sure you get what you want. It’s as simple as that. Don’t over-complicate.
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Next, you say they make you feel unsophisticated and “dirty” for wanting to keep her alive and get her proper care. She believes in care and always has, has always taken great care to the doctors in her life, even at doing each year and for us as kids, you have four sisters that will support you but want to stay away so they won’t be reminded to Do Not Resuscitate (DNR) requests because they don’t study this stuff and they don’t like hospitals when they
visit.
They are 100 percent supportive, but one of them thinks comfort care is good in general and she has mumbled it in front of her caregivers once before in the hospital, she and you don’t talk about this much right now.
Again, Thea don’t make anybody make you feel unsophisticated or “dirty” for wanting to keep your Mom alive and get the proper care.
It’s just what you want, it’s just your preference, your mother’s preference, especially if she believes in care and treatment, you know, she’s always taken great care of itself. So just keep going with that. And you know, and keep informing your sisters about what you’re doing. It sounds like you are the decision maker and if you have good rapport with your mother, just keep referring back to what your mother wants so you have returned home for now. I think
that’s a very good idea, especially if you have 24-hour caregivers because you don’t want to burn out. You don’t want to burn out. You need to look after yourself because this could go on for a few weeks, for a little while.
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You know, and you just need to keep making sure that you get what you want for your mother. OK? Any other questions? Please get back to me and I will flick back in email to you with some answers that you can take action on. Take care.
Patrik
Patrik:
Thank you for your help.
Perhaps I have done wrong with Mom’s status choice? You wrote the following:
“Just keep going, keep going back to saying, look, I want full treatment for our mom except for cardiac compressions and Intubation. Everything else I want for her.
Just keep repeating yourself and make sure you get what you want. It’s as simple as that. Don’t over-complicate.”
I have to ask you this? I have Mom at “Full-code” (which includes cardiac compressions and intubation) because I am afraid that any type of Do Not Resuscitate (DNR) means, she will not “really” get very good care, or maybe even the room, or bed she has? I just don’t feel that she would get the same care with a “lesser” status than “full-code”.
They haven’t described the various choices of Do Not Resuscitate (DNR) well, just telling me “do I want her ribs crushed”? But I felt it was safest to go “FULL CODE” and then it is clear!!!! And I would like to leave it like this unless you think I am risking anything else for her that I’m not thinking of, like might they discharge her sooner so as not to have the liability of a 98-year-old full-code in the hospital?
In other words, would full-code give her any “negative” that I am just ignorant of?
Other than them thinking I am ridiculous? But if not, then I would leave it here. I don’t want her to have Cardio-Pulmonary Resuscitation (CPR) or Intubation at her age, but I feel I would see a decline first and be able to change her status if she were to start to decline. I am right here, not by phone across the country as many children might be. Our experience is: My Uncle was allowed to choke and die as he fell ill in the cafeteria (choking) while people
stood back and said, “he has a Do Not Resuscitate (DNR), don’t help him”.
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She is quiet today but the caregiver feels she is “same” and NOT worse than yesterday. My question is, she typically has high blood pressure without her heart meds I would think it would be 140 systolic by now? Especially with all the volume given and edema and the liquid food with 954 mg sodium which she eats less sodium than that at home. (at home, Natural sodium in the Mediterranean-type diet, no added salt for Congestive Heart Failure) But with recent skin
infection, her BP tended to go down, in fact, we held some heart meds when BP under 100 during that infection. But after she was well again, her BP became higher again to carefully add back heart meds. Are these recent BP readings strong enough? The last lactic acid test was 1.6 on March 6th. Why isn’t her BP higher by now?
They just hung another bag of antibiotics Piperacillin/Tazobactam if that tells you anything.
Sunday, March 11 Blood Pressure
6am 100/48
12:20pm 93/43
4pm 98/48
8pm 97/48
Monday, March 12 Blood Pressure
4:30am 94/48
8am 101/43
Noon 91/45
Thank you for your help.
Thea
Hi Thea,
Thank you for clarifying.
I read your first email as if you wanted everything but cardiac compressions and intubation. If you want full resuscitation status for your mom it would include Cardiac compressions and intubation. There is certainly no guarantee for anyone to “crack ribs” during Cardio-Pulmonary Resuscitation (CPR) and there is also no guarantee for saving a life during cardiac compressions either, but it increases the chances.
Don’t let anybody make you feel bad about you or your mother’s choices. Always keep in mind that it’s none of your business what other people think about you or your choices. This is a critical mindset to have. Age is not a determining factor of somebody having full code or not. Outlook on life, personal beliefs personal preferences and quality of life are the determining factors for your choices and nothing else.
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Again, don’t make anybody feel you bad by saying “do you want her ribs to be crushed?” You can’t control what they are saying but you can control your reaction to it. With severe infections often one of the first signs is BP going down, therefore withholding heart meds makes sense.
Given that her BP is still low and they are starting antibiotics again, there is a very good chance she is still battling an infection. An infection is bringing BP down.
Lactate 1.6 is slightly elevated, which could be a sign of an infection. Keep asking for her temperature as well as White cell count and CRP for infection markers.
Also have they done more testing like sputum , urine tests to isolate a potential bug and treat it?
They may have done so which is why she’s getting the Tazocin.
With BP low they will need to keep watching her urine output because the low BP might compromise her kidney perfusion.
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Please also ensure she keeps getting mobilized to prevent Pneumonia and just get her going as much
as you can, it will also prevent pressure sores. Also, if she’s swollen, she may need Frusemide to get the swelling down especially with a weak heart Congestive Heart Failure. You don’t want to fluid overload a weak heart.
I hope this all makes sense. Please let me know if you have any other questions.
Kind Regards,
Patrik
The 1:1 consulting session will continue in next week’s episode.
Kind Regards
