My Dad’s Prognosis is Poor According to the Doctor But Who is Really Directing His Care? Help!

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 is Already Out of ICU But Still with Swallowing and Speech Problem. Should I Request for a Review of His Medical Records to Know the Cause?

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 seeks advice from a neuro gastroenterologist about her dad’s swallowing problem and she asks what would be the next step in her dad’s care based on what the specialist said.

My Dad’s Prognosis is Poor According to the Doctor But Who is Really Directing His Care? Help!

Hi Patrik,

This is the email exchange I told you about on the Skype message, with the neuro gastroenterologist, who does specialist research in dysphagia.

I would very much welcome your thoughts.

Best wishes as ever,

Anna

Dear Professor Bach,

I write on behalf of my father, who has asked me to contact you after my telling him about your specialist work in neuro-gastroenterology and dysphagia.

My dad has been a patient at the St. Anne’s Hospital for 5 months, having spent the initial 3 months in the intensive care unit.

He is 76.

RECOMMENDED:

Membership for families in Intensive Care

Book your free consultation call here

Check out our Ebooks and videos

His critical illness has been complex, and his recovery, ongoing.

He was admitted to ICU with double pneumonia/respiratory failure and sepsis. His condition continued to deteriorate rapidly despite antibiotic therapy and mechanical ventilation. He went into kidney failure. In early May he suffered 7 cardiac arrests after an (uncomplicated) tracheostomy procedure. Thanks to the skills of the critical care staff, each arrest was reversed, with no drop in oxygen levels.

It took Dad weeks and weeks to emerge from the induced coma. It was thought that he must have suffered irretrievable brain damage not discernible on diagnostic scans.

An MRI was not possible due to the pacemaker fitted after his cardiac arrests, so a head CT scan was done, which was normal.

The clinical outlook was that he would likely remain in a vegetative/minimally conscious state.

Gradually he woke up, although it took many weeks to recover from delirium. By early this year, he regained normal cognitive function.

It looked unlikely that Dad would wean from the ventilator, such was the ostensible damage to his lungs.

However, by mid-July he successfully weaned from the ventilator after many setbacks and multiple secondary lung infections.

The tracheostomy was removed. He began oral trials but it became clear he has silent aspiration.

Of course, his prolonged critical illness has left him with chronic muscle wasting. He was diagnosed with ICU acquired weakness and critical illness polyneuropathy. There are additional aspects: his vocal cords have sustained structural damage from long term intubation; his swallow is not safe and he has ongoing bowel incontinence which is still unresolved.

Throughout his stay in ICU, Dad was fed through an NG tube which remained until yesterday, when he underwent a PEG feed procedure to obviate complications in managing the NG tube (displacement of tube, weight loss).

Dad wants to recover as well as he can, and addressing his dysphagia and bowel incontinence is extremely important to him.

Before becoming seriously ill, he was in good health, active and rarely unwell (despite having COPD).

We remain indebted to the specialist care delivered by the multidisciplinary teams within ICU and beyond.

The hospital have been open and honest in communicating with us that they have never had a patient case like him before.

His recovery from the point of no return has been remarkable for the clinicians and for us.

The clinicians feel he is unique and that tailoring the right pathway for his aftercare and recovery is presenting something of a challenge. For example, he was discharged from ICU to the neuro ward but when he developed a lung infection it required him to be transferred to the respiratory ward.

Fortunately, he is now under the care of a specialist respiratory physician who diagnosed Interstitial Lung Disease. After commencing treatment, Dad came off all oxygen requirements and his lungs have recovered.

The challenges which remain are the complexities of his current condition, which of course are shaped by the complexities of his critical illness over the last 5 months.

Dad is very conscious that he is in a critical stage of his recovery and he would really welcome perspectives on possible treatment pathways and how he can move forward.

He would have written to you himself to seek your expertise, but he is unable to write well enough yet or type.

We are conscious that you must have so many demands on your time, and do hope you don’t mind us writing to you directly. We were not sure the best way to go about it; if you offer private consultations/patient case reviews we would be very keen to seek your expert opinion.

For information/reference I attach copies of the two video fluoroscopy procedures done, with Dad’s full consent.

The clinical team are considering a head MRI, but tell us they are cautious to proceed unless the benefits outweigh the known risks.

With many thanks.

Yours sincerely,

Anna Ward

RECOMMENDATION:

THE 3 WAYS ON HOW TO TURN THE TABLES IN YOUR FAVOUR AND HAVE CONTROL, POWER AND INFLUENCE WHILST YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

Why having a loved one critically ill in Intensive Care is a ONCE IN A LIFETIME situation and why YOU can’t AFFORD GETTING IT WRONG!”

HOW TO MAKE SURE THAT “WHAT YOU SEE IS ALWAYS WHAT YOU GET” WHILST YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

Hello Anna,

Apologies for the tardy response to your email.

As you can imagine, being both a clinician and an academic means you are almost always 2 weeks behind the curve on everything.

Thank you for the summary of your father and the copies of the VFS reports enclosed. The situation as you mention is complex, with overlapping comorbidity, all of which can interfere with safe swallowing.

I note the VFS reports showing primarily a pharyngo-laryngeal problem, with presumed reduced sensitivity and significant weakness plus the vocal cord paresis. It would not be unusual to see this type of picture in a post ICU patient, with possible hypoxic brain damage, CIPN/myopathy and the diagnosed concurrent lung disease.

Given the multifactorial nature of the problem, a single solution is unlikely and I will also be honest and say that the prognosis in terms of (swallowing) recovery is not good. Moreover, in terms of recovery, the longer the dysphagia persists, generally the poorer the response to treatments. Most of the neuromodulation therapies, which I have been involved with and have researched, remain experimental are unlikely to impact on this level of deficit. Intensive SALT, such as the McNeill Dysphagia Therapy Programme has shown some limited success, but is labor intensive and relies on significant amounts of co-operation and compliance. However, your father’s SALT team may want to explore this option further.

As you might be aware, I’ve been heavily involved in the development, study and commercialization, via a University spin-out, of pharyngeal electrical stimulation – mainly in stroke. I should also emphasize this as a declaration of conflict of interest when discussing this treatment with you. However, there are some groups in Austria that have attempted to use this technique in post-ICU patients with dysphagia with some success. These have been mainly open label studies, so there is very limited evidence that would be considered of a high quality. However given your father’s situation, and the lack of any viable alternatives, I would propose that, if you can access a center that has this technique, this is perhaps considered.

Unfortunately very few hospitals in the UK are using or have access to the technique – given the limited evidence base, costs, the current lack of NICE guidelines and the general slowness of adoption in the NHS. Even I don’t have direct access to it in my own hospital! However, I’m aware that Phagenesis Ltd, the company that sell the product, offer a free tester pack for trial by clinicians across the UK. I’m not sure if the clinicians and therapists at St. Anne’s Hospital would be willing to consider this option – if they are, I can pass your details on to the company. Unfortunately, I don’t do any private practice, so it’s very difficult for me to offer any face to face examinations.

I hope this brief summary is of some (limited) benefit, and I wish you father all the best in his recovery.

With regards,

Prof Bach PhD FRCP

RECOMMENDATION:

HOW MEDICAL RESEARCH DOMINATES YOUR CRITICALLY ILL LOVED ONE’S DIAGNOSIS AND PROGNOSIS, AS WELL AS THE CARE AND TREATMENT YOUR LOVED ONE IS RECEIVING OR NOT RECEIVING!

Evidence- Based approach

Hi Anna,

The delay in giving Insulin when feeds have been stopped is due to hypoglycemia=low blood sugar. When NG feeds are being stopped for diabetic Patients sugar is likely to go down not up.

Hyperglycemia means high blood sugars.

The delay in giving Metformin in particular might have increased blood sugars in the short term, no question about it, even in the absence of feeding.

However not feeding at all for long periods- which has been the case- also has the risk of low blood sugars over time. He basically had no nutrition for up to 24 or even 36 hours from what I have seen in the previous notes.

This is dangerous for anyone let alone for a diabetic. A diabetic Patient can have erratic blood sugars at the best of times, let alone during a time when NG feeds are not given consistently.

That means that both ends of the spectrum hyper and hypoglycemia are a concern from my perspective and experience.

Normally after or during critical illness, Insulin is a temporary treatment option and not permanent. I do remember your Dad being on steroids, therefore his sugar level baseline might be elevated because of the steroids, potentially triggering the need for permanent Insulin.

You should ask the endocrinologist and the diabetic nurse what they think is going to happen long term with Insulin. Also ask the dietician.

You are saying that “SALT have fallen away on the premise that they couldn’t do anymore until NG tube is removed and MRI is done”.

I can’t see how that could impact on your Dad not having any SALT. It sounds to me like speech therapy might be out of their depth too. It takes a very experienced speech therapist treating tracheostomy or former tracheostomy Patients, not many have those skills.

It looks to me like it’s been too difficult for the whole treating team and they are all overwhelmed and potentially out of their depth.

This whole NG tube issue looks really amateurish to me and it shouldn’t have happened in the first place.

Having an x-ray almost daily due to NG tube dislodgement is dangerous and has potential negative side effects.

If he can’t dress or wash himself, it might be too early to go to rehab. How can he get there?

The Physios need to make a plan to continuously moving him forward and keep up the mobilization schedule.

Overall it definitely sounds like a cop out, at the same time, there is always a chance for your Dad moving forward at his own pace. I believe he’s definitely moving forward, just slowly.

As far as the catheter is concerned, it’s a clear infection risk. By the same token, taking it out and your Dad potentially becoming incontinent might trigger skin irritation, as well as the need for nappies.

Does he wear nappies at present due to bowel incontinence?

Who’s is the team of 3 you are referring to? Doctors, Nurses, Speech therapy or Physios? Who’s in charge anyways?

RECOMMENDATION:

When an Intensive Care Unit is failing one of their families! A real life case study!

WHAT YOU AND YOUR FAMILY NEED TO DO IF YOUR CRITICALLY ILL LOVED ONE IS VERY SICK IN INTENSIVE CARE AND FACES AN UNCERTAIN FUTURE WITH THE POSSIBILITY OF FUTURE QUALITY OF LIFE IMPAIRMENTS

HOW TO COPE WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!

I have read Prof Bach’s report and I’m not surprised that he suggests prognosis is poor. However, he also suggests that experimental treatment might be beneficial.

From a practical point of view, I strongly feel SALT needs to recommence ASAP. Another option might be to seek a private speech therapist who has experience with post-tracheostomy swallowing and voice recovery. Those speech therapists would be out there somewhere, however probably are rare to find.

Experimental treatment such as what Prof. Bach is referring to with McNeill Dysphagia Therapy Programme could be an option. If you google “McNeill Dysphagia Therapy Programme” you’ll get some information.

As I mentioned before, with a PEG in place, they might think that nutrition is now taken care of however and therefore they neglect the swallowing aspect as well as the voice recovery.

Swallowing and voice recovery take specialist skills when working with Patients. I can see that they don’t have those skills in this particular hospital.

RECOMMENDED:

1:1 Email counselling and consulting with Patrik

7 days unlimited 1:1 phone consulting and advocacy

Membership for families in Intensive Care

1:1 phone and email counselling and consulting with Patrik

Exercising your Dad’s swallow as well as the voice daily is important and it sounds like it hasn’t happened. Normally for voice recovery after tracheostomy, the speech therapist goes through a set of training exercises with Patients and again it takes a highly skilled speech therapist that is persistent as well.

The many secretions he has could be from a potential neurological deficit.

The question most important to me really is, who is directing his care? Does anybody have a plan what needs to happen what, when and by whom?

Also, have you looked at the rehab facility? Is this within driving distance for your Dad’s wife?

Also, once you have the doctors notes, you might find information documented that is useful.

Kind regards,

Patrik

How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?

You get to that all important feeling of making informed decisions, get PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below!

In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!

Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover

How to ask the doctors and the nurses the right questions

Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests

How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying

5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation