What happens with No interventions?

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cpcopin

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Loved one DX
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08/2015
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US
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California
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Anytown
My PALS adamantly wants NO interventions and has expressed his wishes in a legal document. He is at a point where he has been told to think about a feeding tube and bipap. He wants NOTHING. What now?
 
Re: What happens with No inteventions?

The idea behind the interventions is to prolong life, or to make things more comfortable. So without them he will deteriorate quicker. If choking is an issue, he will choke. If breathing is an issue, he will have a higher CO2 level and have air hunger, which is not pleasant. Either way he will die, but at a higher level of discomfort without intervention.
Vincent
 
Re: What happens with No inteventions?

What about hospice and morphine?
 
Re: What happens with No inteventions?

My wife opted for no interventions whatsoever. She had the most peaceful and dignified passing as a result.

My wife was a doctor for 20 years. Like many doctors, she chose not to be sustained artificially. No tubes, no feeding, no IV, no oxygen or forced ventilation. She did allow ONE tube once she was completely and forever confined to bed--a catheter so that we would not have to clean up any pee.

Her ALS had a very rapid progression. It was all over--from first symptom to death--in less than one year. At the end, she had lost every one of her muscles, including her lungs, face, and eyes. On her last day, she could not move her eyeballs or blink on purpose to communicate. I had to constantly put drops into her eyes to prevent her eyeballs from drying out and causing her pain. She was totally and completely locked in.

I'm very happy she chose to go without interventions. If she had opted to keep her body alive longer with feeding and breathing support, then she would have been living for who knows how long, completely limp in all muscles, unable to communicate even by blinking. I cannot imagine a more tortured way of living. Fortunately she died within 24 hours of being totally locked in.

We had hospice in home and morphine in the refrigerator. She had ordered that, whenever she showed signs of air hunger, we were NOT to increase her air, but instead, we were to give her more morphine. As a result, she never felt the fear and panic of air hunger and she was allowed to die in peace. During the last few minutes of her passing, she was surrounded by her family, 3 sisters, nieces, brother, husband and children and we held her hand until her heartbeat faded.
 
Re: What happens with No inteventions?

With all due respect, Mike, Krissy opted out of BiPAP and that likely changed the course of her disease as more of her energy was used for breathing than would have been the case. So I'm not sure it's fair to presume that with BiPAP she would have become locked in on that same day. On the other hand, CP's husband evidently wants to forego BiPAP as well, though it's important to note also that most PALS do not die locked-in. They don't get that far.

CP, we have previous threads that you might want to read. Your husband can still have a more comfortable death with morphine but choking, aspiration and/or air hunger could make it more prolonged than it would be otherwise. For that reason, I would have morphine solution on hand to titrate to his best comfort level. You don't need hospice to write it; any doc can. You can administer it; you don't need a third party to do that. It is your and your husband's choice as to how his life ends.

Best,
Laurie
 
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I think the responses show you different peoples viewpoints and experience. Talk to your pals doctor. If this is truly what he wants when he is fully informed then it is important to get that witnessed by his doctor.
 
I have just done an advanced health directive. The general gist is if some event occurs that will kill me, give me pain relief but let me die.

I am 16 months into bulbar mnd. I have about 8 months left. Roughly. I am refusing a trache. I am consenting to vpap at night only (not needed yet) and will get a peg for having medicine and maybe nutrition.

My philosophy is that i do not want to exist just because technology allows it.
 
AP did they offer you a trache?
 
Only offered in the context of saving my life as a part of an emergency procedure.

As far as i know, we don't get them in Australia as a part of mnd treatment.
 
Hi Ap, nice to see you again, take care and sending hugs.
Luv Gem
 
AP that's where I was a little confused... as I know venting is not an option here.

Good on you for doing the AHCD, they are not easy, but it means your wishes can be followed.

Get the peg early mate, not to prolong your life, but to make the whole process easier - you want the procedure while you are as healthy and hydrated as possible, and while your breathing is still ok. You will adjust to taking in nutrition if you are not already losing weight fast.

The peg can be used for comfort as well as 'intervention'. I know I could look after my Chris far better with the peg. He was rapid progression bulbar onset.

None of these choices are easy, but I believe that the PALS is the one who should chose, and the role of their loved ones is to support their choices.
 
I have read several times, in various wording, that PALS in Australia" can't" have a trach. I assume this means no trach and vent, but does it also mean no trach by itself to be used for suctioning and/or BiPAP attachment rather than a mask? And can I assume that this "can't" means that your health care will not pay for it? What about people with high spinal cord injuries? Are they simply not intubated at the scene so that permanent ventilation never becomes an issue? Is life expectancy the deciding factor? Not intending to criticize, just curious as to how things are handled there. Hard decisions for an individual to make, much less for national policy!
 
Diane, I have not heard of any PALS here having a trach alone either.

It is a financial thing - I would presume that if someone had the money they could elect to pay privately for a trach and vent and then all the care afterwards. I have asked over here and have not found any aussie that has elected to pay for that.

In the case of spinal cord injuries it is very different. Yes, they are intubated at the scene, and then they are normally an insurance case.

It's nearly impossible to get a suction machine at home because our health professionals don't want to authorise it. We don't have access to cough assist because for some reason I don't know, the companies that make these do not sell them in Australia. We also don't have access to Neudexta, and I've no idea why the company that make it don't sell it here.

It's hard to explain how different our health system is. I wouldn't trade ours for the US system any day - everyone here can afford to be seen by a doctor as you will be seen free if needed. Yes, you have to take whoever you get in these situations, but access to health care is considered a basic right here. It's not a perfect system, and we all complain about lots of aspects of it here, but when I consider what a totally private health system would look like ...

Thanks for asking :)
 
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