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 Dad’s Prognosis is Poor According to the Doctor But Who is Really Directing His Care? 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 Anna as part of my 1:1 consulting and advocacy service!  Anna’s dad was rushed back to the hospital due to an infection and the medical team wants to place him on a DNR status. Anna is asking for help to manage the situation appropriate for her dad’s state.

 

The Medical Team Wants My Dad On A DNR (Do Not Resuscitate) Status. What Should We Do? Help!

 

Hi Patrik,

 

Thanks so much as always for your advice and support!

 

Sorry it’s taken me a while to respond; Dad is back in hospital. He was admitted via ambulance. My brother visited him at home that morning and was really concerned to find him in bed and delirious, with an inability to speak. My stepmom felt it was due to the consistently high blood sugars and that it would resolve (she was in daily contact with the diabetic team help line). 

 

Fortunately, my brother urged her to question this and to ring for an ambulance. The paramedics took him in straight away.

 

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Working diagnosis has been pneumonia and sepsis.

 

Things looked perilous that day and the consultant and matron told us they wanted to place a DNR if he arrested. I used everything you have taught me, not to be rushed into making decisions, to advocate for dad. ICU reviewed him and said they wouldn’t readmit him. Said there was nothing they could do that would be in his best interests. Ward consultant said, we may reach a point where we have to accept he is not going to make it, or is dying but that they would continue to offer all treatment in the hope he would respond to antibiotics and steroids.

 

My sister and I have learned through your counsel to think carefully, ask questions, consider the viewpoints of the medics and not be rushed to make decisions which might prove critical Re: the DNR, I sought clarity. What does this actually mean?

 

Would you try to resuscitate? Or not even attempt it? At the time, he was very unwell. They said is it fair to jump on his chest? Is the outcome likely to be negative? 

 

I said, well the quality of the CPR if he arrested would be my big question. How quickly would a response happen? How at risk would he be of potential brain damage? They said they would act and crash team would immediately come. That they would try to resuscitate but if clear it’s not working they would stop.

 

In the end we said, ok well, dad has had plenty of opportunities to go before and he hasn’t. If he arrests it may be his natural choice to go. But we review it in the morning. They agreed. Fortunately, he made it through the night.

 

He was exhausted the next day, slept all day and still a bit delirious. But by Friday he was awake and sitting in his chair. He is still on oxygen, but it’s coming down.

 

Sodium levels now normal. Blood sugars still high and erratic. I’m going to purchase a package to get your advice on how to manage this whole situation.

 

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We have maintained our position as advocates and reminded them it’s their duty to treat dad to the point where he can make decisions himself, if possible and fortunately we are at that point again as he can communicate. Although of course he’s still not out of the woods. 

 

So, there is still the unresolved issue of his ongoing diarrhea (unchanged since admission to ICU as you know) He is NBM due to the dysphagia as you know, PEG fed since November (after the NG tube debacle which you know well too!) but actually it’s clear dad has not been receiving adequate levels of hydration or nutrition, or indeed absorbing his insulin. 

 

On admission to hospital, he was dehydrated (despite my stepmom administering the feeds correctly including flushing etc.) and had lost weight. For the 3-week period he was at home his blood sugars were 30-35 daily. My stepmom was on the phone every day to the diabetic team who used to advise upping the insulin. But then started to speculate that he wasn’t absorbing the insulin as he was so fatigued.

 

Thank you Patrik! Also not sure if I told you MRI done on 5 December showed two old strokes (which stroke consultant told us have resolved well), two micro bleeds and microvascular ischemic disease sitting in the pons area of the brain (and likely cause of dysphagia and voice atrophy, we have been told).

 

Dad is feeling much better today, was sitting out in chair. Still on oxygen cannula but at reduced rate and oxygen saturation unaffected. Alert and able to communicate. He is remarkable and surprised the clinicians once again! But of course in the back of my mind I always worry how much Dad can take, poor man. 

 

Also we applied formally on dad’s behalf (he signed the form) for copies of all his medical records, including doctor’s written notes but they have only sent us radiology images, some charts but not the nursing or medic narrative that we know exists. Should we be able to access those? Without the medical/doctors notes it’s impossible to track the decision making and narrative. 

 

Obviously the request came from Dad himself too. 

 

Many thanks in advance for your help Patrik.

 

As always,

 

Anna

 

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Hi Anna,

 

It’s Patrik here from intensive care hotline.

 

Thank you again for being a client I really appreciate it. I’m very sorry to hear that your dad is back in hospital. I do understand that he’s not in ICU and the ICU team is involved, but they don’t want to admit him at the moment and they do want to place a DNR order form what you are saying that your dad has been diagnosed with pneumonia and sepsis.

 

My question is, how are they treating the pneumonia and sepsis? If somebody has sepsis, there’s a high chance they need ICU. So you may want to clarify if it is really a sepsis or whether it’s just a pneumonia slash infection. You also want to find out if they really place a DNR on your dad or not because you know, sometimes they say, oh, they might want to place a DNR and in fact it has already happened.

 

So you may want to get evidence that they haven’t placed a DNR. You should definitely advocate for your dad to go into ICU if he needs to. Now, here’s the other thing, you know, you may also want to look at things like, you know, what are your Dad’s vital sign?

 

So starting from the top, really, you know, you mentioned he’s not talking from what I remember. I do remember the speech therapy involved in the past and I wasn’t sure or I’m not sure at this stage if he was able to talk or not. Then next, how are his vital signs, you know, is he in a regular heart rhythm?

 

I do believe he was in atrial fibrillation or AF in the past. You know, what are those vital signs showing ECG, is his blood pressure normal? And most importantly with the pneumonia, what is, you know, what is his respiratory status?

 

Like, for example, what is this oxygen saturation like? What is his work of breathing? How fast is he breathing? How slow is he breathing? Is he able to take deep breaths? Is he able to only take shallow breaths, etc.? Using his respiratory muscles or is he using his abdominal muscles because he can’t breathe properly, etc. Is he on high flow oxygen? How much oxygen is he on?

 

Those are very important questions, you know, would he benefit from BIPAP you know, you’ve seen BIPAP in the past with the mask. Would he potentially benefit from having the tracheostomy inserted temporarily? You know, is he able to cough up all his secretions, you know, those are the important questions. What are they doing for the pneumonia? Are they giving him antibiotics? Have they done a sputum sample? Do they know what they’re treating him for? Is he getting chest Physiotherapy for the Pneumonia?

 

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Also, you know, with the sepsis, often patients can go into kidney failure and I do believe your dad has been in kidney failure in the past from what I remember. So those are all the questions because the sepsis can easily shut down the kidneys and therefore, you know, you may want to ask whether the kidneys are okay.

 

You’re also saying that ICU, they reviewed him on the ward and they said they wouldn’t readmit him. So you know, you got to talk to them over and over again and tell them that you want him back into ICU and that you decide what’s in his best interests and not they.

 

And also if your dad is awake, ask him what he wants, ask him whether he wants to go into ICU or not, and then, you know, make sure that they know what your dad wants. You’re saying the ward consultant said that we may reach a point where you have to accept he’s not going to make it or is dying again, you know, that they’re always negative and that they’re always painting the worst case scenario picture.

 

So I wouldn’t be too worried about that and I would just go with advocating for him.

 

You know, you mentioned antibiotics and steroids. Again, the steroids would impact on the sugar also. How do they control the sugar? Is it insulin? Is it tablets like Metformin? Is it diet or is it a combination of all of it?

 

You know, you are saying that through my counsel, you need to think carefully and ask questions. Consider the viewpoints of the medics and not be rushed to make decisions which might prove critical, so therefore you’re absolutely right with that, keep standing your ground!

 

But therefore you need to make sure that your dad can go into ICU anytime if required. So, regarding the DNR you sought clarity, what does this actually mean?

 

Would I try to resuscitate or not even attempted? I can’t answer that question for you, Anna. However, again, if your dad is able to make a decision, ask him. Ask him that if he wants to be resuscitated or not. Right? And the decision should be made by your dad. You know, they say it’s not fair to jump on his chest again, ask your dad.

 

Yes. The outcome is likely to be negative potentially because your dad has been through so much, but if he survived seven cardiac arrests, why could he not survive an eighth one? You’ve got to ask those questions. You know, the risk would be of potential brain damage, you know? Yes. If there is significant downtime during CPR, yes, the risk for potential brain damage is there. But again, it’s all hypothetical at this stage.

 

You then say they would act if the crash team would come immediately, yes, that would be necessary. And if it’s not clear they would stop, they would stop CPR, but that’s why you need to make sure that there is no DNR, period. You need to make sure that there is no DNR so that you know, they will do everything that you want them to do at this point in time.

 

You know, they’re clearly pointing out your dad has had plenty of opportunities to go before and he hasn’t and that’s what you should base your judgment on. And if he arrested maybe a natural choice to go, yeah, but again, why would you do that if you don’t want that? Leave it up to your Dad.

 

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So he made it through that night. You need to make sure that there is no DNR and by Friday, he was awake and sitting in his chair. That looks good in that picture. I mean, you keep asking your Dad what he wants. That is the most important thing.

 

You’re also saying that blood sugars are still high and erratic. Yes. Make sure he’s getting some feeds, regular feeds, and also have a look how much steroids he’s getting it. He’s getting lots of steroids. His sugars will be through the roof!

 

You need to maintain your position as advocates and you definitely need to remind them that you want everything to be done including sorting out the blood sugar issue. It’s their duty of care to treat your dad to the point where he can make the decision himself. It’s what I said all the way along, you know. But even though he’s not out of the woods yet, you would definitely want to make sure that there is no DNR and he can go into ICU if need be.

 

Now you’re talking about unresolved issue of ongoing diarrhoea since admission to ICU in May. Have you consulted a dietician and/or gastroenterology? Is he getting Gastro stop to counteract the diarrhoea? Especially with diarrhoea he will need water to stop him from dehydration.

 

He’s still NBM since November and I do remember the nasal gastric tube debacle.

 

You know, it’s clear that your dad has not been receiving adequate levels of hydration or nutrition or indeed absorbing his insulin. Can you share with me how much hydration or nutrition he has been getting? If he was dehydrated, you know, can you give me an idea how much fluids he’s had or how much he’s getting every day and if he’s lost weight, there’s a good chance he is malnourished and you don’t want that. The sugars were 30 to 35 daily. That’s incredibly high.

 

It needs to be sorted while he’s in hospital. The sugar and the insulin needs to be sorted. Get an endocrinologist involved. High sugars at home are a huge risk for hospital readmissions. He’s in hospital, but that’s the best way to get the sugar sorted because that could get your dad to bounce back into hospital if the sugar’s up and down.

 

Okay. So if you can clarify those issues and then you know, I can respond to that.

 

You’re thinking he wasn’t absorbing the insulin as he was so fatigued. I think insulin absorption should be pretty steady. I would hope you’re also saying that the MRI done on the 5th of December shows old strokes and micro bleeds and microvascular ischemic disease, but he’s feeling much better today.

 

He’s sitting out in the chair and is on an oxygen cannula, but at reduced rates and oxygen saturation unaffected. He is alert and able to communicate that is remarkable. And he surprised the doctors once again, but you still need to, you still need to make sure there is no DNR in place so he can keep surprising the doctors!

 

And you need to make sure he can go back into ICU whenever needed!

 

Voice atrophy I believe is a result of prolonged tracheostomy. Dysphagia could be a result of the stroke but also prolonged ICU stay!

 

Is he still getting speech therapy?

 

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Last but not least, you will need to make sure your stepmom will get some support when your Dad is going home! What about hospital in the home type services? A nurse coming at least once a day to check blood sugar levels and give your stepmom a hand by assessing your Dad? It’s a vital necessity going forward. Ask the hospital, they will need to sort something out. They don’t want your Dad back in hospital!

 

Always, always check in with your Dad, as long as your Dad isn’t giving up neither should you!

 

You will need the copies of all of his medical records. You know, you need to keep pushing for that. You need to keep pushing for the medical records. You will need to access the medical records to ensure no DNR and ICU access when needed and if the request came from your Dad, that’s even better. Okay. So if you can answer some of my questions and I can get back to you and guide you further.

 

Thank you Anna!

 

Kind regards,

 

Patrik