Non Invasive Ventilation vs Tracheostomy

[Handmaiden]

Hi Friends,

It has been so very long since I have posted anything, and my brother is now close to 4 years since his diagnosis of bulbar onset ALS.

He went from slurring his words, to feeding tube, unable to speak, unable to walk, wheelchair, bipap and for the past 4 months requires the use of non invasive ventilation support using the trilogy machine. He is unable to breath at all on his own anymore.

When he was switched from his bipap to the trilogy, he was provided a new mask which has straps that go around his face. The only time the mask is removed is to attend to his oral care.

That being said, his hospice respiratory therapist and nurse have been talking to him about switching over to an "invasive tracheostomy" due to the fact the mask is breaking down the skin on his face, which could lead to open sores, and infection. They say the trach will give him relief.

The thing that surprised me was that I was told that even by going to a trach - it would not extend his life, only the quality of his life (my removing the face mask). He said that despite having the trach, that the ALS would continue to progress. I began to think about Steven Hawking who has had his life extended for years due to a ventilator. I thought it would allow more time. Only to be told that is not the case.

Now, my brother is weighing the option of remaining on the mask...or invasive surgery.

Has anyone gone from the mask to the trach?

Thank you dear friends...blessings to you all.

 

[lgelb]

You will get replies from those who have vented "invasively" (the trach; what your brother now has is non-invasive ventilation or NIV). I will just clarify that Hawking is considered a very rare case in terms of extended survival and it is generally accepted that ALS continues to progress even while vented because venting is still only addressing a symptom -- respiratory compromise -- and doesn't change the fact that more motor neurons can still die or more strength can be lost after they die, as time goes by.

In thinking about a trach, there are some good pages on the Net and this forum -- it is a substantial commitment financially and personally and as a family so those are all things to think about. It may be worth considering a different mask while consideration is going on; the first step in breakdown (besides ointments and dressings) is switching up the mask.

 

[ECpara]

As suggested by lgelb, there is so much to consider. First, the expense according to most websites, states that it may cost $100,000 to $200,000 a year to stay alive on a ventilator. That being said, it doesn't stop progression, the disease continues to cause motor neurons to die. I have a dear friend whose husband is on one. They fortunately afford it through the VA and other deep pockets. But she has recently told me how they regret having ever done this. He can no longer use his eye gaze computer as his eyes no longer move. He also can no longer blink, so their only means to communicate is gone. He is truly "locked in". She was waiting for him to make the decision to go off the ventilator while his eyelids could still blink, he never did so now the decision is up to her. I wouldn't want to be in her shoes. Some vented ALS patients can still move their eyes, Stephen Hawkins can still move his cheek muscles and his eyes, thus has a means to communicate. They're the "lucky" ones.

 

[MaxEidswick]

>In thinking about a trach, there are some good pages on the Net and this forum

i strongly encourage you to read the CALS Pity Party thread ... grim reality.

Kind regards,

Max

 

[Barbie]

I am surprised that Hospice is recommending this--Do they continue to cover him if he gets a trach or will all the care and expense fall on your family? This is a very big decision for him to make...always a good idea to decide these things in advance...

 

[GregK]

I would also recommend DianeH's blog on this subject. Diane , like Hawkins , is a long term ALS patient.
As stated, this is an important decision.
Vents and Trachs

 

[Diane H]

Switching from a mask to a trach will certainly prevent pressure sores on his face but there are far less drastic ways to do this. The obvious way is to try other types of masks, and use three different types, switching every eight hours or so to change the area of pressure. Also try nasal pad style. No single mask can be used constantly without pressure problems. Also check out websites selling BiPAP supplies for protective foam pads. I am very surprised that the respiratory therapist hasn't suggested this.

Going on a vent doesn't necessarily mean grim results. It is correct that a trach used with a ventilator does not slow progression of ALS. It can help fight off lung congestion and extend life that way, but weakness will progress. The great risk with a ventilator is that people reach the point of no ability to communicate without having made it clear to their families and doctors if there is a point at which they would prefer to be heavily sedated, removed from the vent, and allowed to die peacefully.

As a 10 year vent user, I am a strong advocate of vent use in ALS for some people but that is the minority of people. I only recommend trying a vent if, as mentioned above, the patient has made known his end of life decisions. Rapidly progressing people are poor candidates for vents because they can reach the point where quality of life is so poor so quickly that the vent is discontinued very soon. If someone has a goal to live long enough for a particular event, even someone progressing rapidly should be allowed to use a vent. It can be discontinued without suffering at any time.

A caregiver who is willing and able is necessary. Finances are not necessarily an insurmountable problem. Some respiratory supply companies have financial aid to cover equipment costs partially or completely after insurance. RNs or other nurses are not required. A mix of family, friends and assistants can easily be trained to manage suctioning.

For someone with slow progression and what they believe is a good quality of life in spite of the degree of paralysis they have already, trying a vent is only a short step up from BiPAP (and actually better in many ways). The real concern is not the amount of care needed but the length of time the person may survive -- possibly many years with slow progression -- until the point where they prefer to die.

 

[Nikki J]

Diane thank you for your post. I wish I had a like button for it!

 

[affected]

Diane that was so well written! Thank you both for the practical stuff about masks and protective pads, but general and personal information about venting.

 

[Handmaiden]

Thank you igelb, ECpara, Max, Barbie, Greg, Diane, Nikki and affected....So much good information to consider. My brother currently does have two different face masks...hadn't thought about alternating them and also including the foam pads. I had never heard about being "locked in" where he would be unable to communicate. I will be checking out all the links and reading recommendations you have mentioned. He stopped breathing twice this past weekend due to mucous back up. The RT came over yesterday and suctioned each nostril and throat with tubing...it was very very difficult for him to endure even though they gave him Diazapam and Morphine to calm him. No one will tell his where he is at in his progression other than he qualifies for hospice care. Thank you again for your responses.....

 

[nebrhahe53]

> But she has recently told me how they regret having ever done this. He can no longer use his eye gaze computer as his eyes no longer move. He also can no longer blink, so their only means to communicate is gone. He is truly "locked in".

My worst nightmare. I would much rather die than exist in a state like that. I can only imagine the hell he is existing in now. They always say the eye muscles are not affected but I've seen too many comments here about how they are to believe anything I hear from doctors anymore.

 

[pecas]

Handmaiden, I'm sure you know this, but I have worked with hospices four times for family members, and (in the US) they will not take a patient unless a doctor (or two) has certified that they are expected to live less than 6 more months. I would ask for a meeting with the hospice doctor and ask some frank questions along those lines. I'm so sorry. Nothing is ever as cut and dried when it's actually happening as it seemed like it would be. Even DNRs are useless if no doctor will say the words "you're dying".

 

[GilWest]

Handmaiden, I'm sure you know this, but I have worked with hospices four times for family members, and (in the US) they will not take a patient unless a doctor (or two) has certified that they are expected to live less than 6 more months. I would ask for a meeting with the hospice doctor and ask some frank questions along those lines. I'm so sorry. Nothing is ever as cut and dried when it's actually happening as it seemed like it would be. Even DNRs are useless if no doctor will say the words "you're dying".

Mom's doctors had no problem certifying for hospice. Your physician can certify for hospice. ALS is a terminal disease and patients do not improve.

 

[GilWest]

A caregiver who is willing and able is necessary. Finances are not necessarily an insurmountable problem. Some respiratory supply companies have financial aid to cover equipment costs partially or completely after insurance. RNs or other nurses are not required. A mix of family, friends and assistants can easily be trained to manage suctioning.

For someone with slow progression and what they believe is a good quality of life in spite of the degree of paralysis they have already, trying a vent is only a short step up from BiPAP (and actually better in many ways). The real concern is not the amount of care needed but the length of time the person may survive -- possibly many years with slow progression -- until the point where they prefer to die.

Do vents not have a Bipap setting? Mom could not tolerate Bipap and filed with secretions, so we elected for trach. The way I see it life is life and death is forever. The trach made mom MUCH more comfortable. She was struggling so much to breathe even on the BiPap. Seeing your loved one scared and struggling like that makes the decision for trach a little easier. It is very hard to be clinical in a situation like that. Even though mom said she did not want a trach, things can and do change when reality hits. I cannot put a value on mom's life and say, "Well, you need to die now because you will be a financial and emotional burden to me."

 

[ECpara]

You are right GilWest. Seeing your loved one struggling to breathe would certainly make the decision to trache an easy one. That is precisely what happened to my friends. But they never made an advance decision when to stop and now he's "locked in". Diane H made such a good point and she would know. Make sure the patient and family are clear about when to stop the vent. Such a sad thing to have to consider but a necessary one. I am SO sad for my friends.