What my research has revealed

[joelc]

The last several weeks have revealed a few things I really don't understand or accept.

1. You can refuse a Bipap.
2. You can disconnect a Bipap.
3. You can refuse a ventilator.
4. You can have a DNR order.
5. You can refuse to eat.
6. You can refuse antibiotics if you have pneumonia.
7. You can't disconnect your ventilator.

All of the above are a guaranteed death sentence.

Number 1 to 6 are something that are respected and hospice will make you comfortable as you die.
Number 7 is not allowed and they will not help you.

I am a bit confused - what is the difference? I guess you have to suffer first?

 

[brooksea]

Joel, are you saying a patient in Canada, no matter the circumstance, has no right to have their own ventilator disconnected? And furthermore, are you saying hospice won't help because you are ventilated?

 

[BarryG]

Joel, number 7 is totally contrary to what my neurologist told me in November when I asked her that specifically. What's the difference between refusing to eat (how do you refuse to eat if you have a peg tube and no hands?) and refusing to breathe except that refusing to breathe is faster?

Thinking of you buddy and hating all of this

 

[BarryG]

Here is a quote from page 60 in the 2010 Manual For People Living With ALS published by the ALS Society of Canada.

http://www.als.ca/_media/docs/2010 Manual People Living With ALS - English.pdfhttp://www.als.ca/als_manuals.aspx

"Artificial ventilation can be withdrawn at any time, and the medical team can ensure that this is done comfortably. It is legally and morally acceptable in Canada to ask to have life-sustaining therapies including mechanical ventilation withdrawn."

 

[abbas child]

Joel, is this your area's Hospice ruling or a more widespread law? If it is purely a Hospice rule, could you meet with your Pulmonary Doc and talk with him about how to deal with this? Or, do you have a choice of more than one Hospice to use?

 

[LornaDoone]

In BC, once you are on a ventilator, you can not go off it. It is considered suicide which is against the law. We were recently looking into this and this is how I understand it works. But I must admit that I dont totally get it. Barry's information seems to totally contradict what the ALS people lead me to believe.

What I wonder now is what is to prevent someone from disconnecting it themselves? If it's against the law, so what.. they can't arrest you. Keep in mind, I have no idea how a ventilator works.

 

[brooksea]

I guess if it is "illegal" the issue would involve the caregiver. Not good...

 

[TedH5]

Joel I know this is a little off subject but I just want to say I hate you are going through this. I know I speak for many when I say that I admire your strength and am praying for you.

 

[Katie C]

Joel I have to agree that's just weird. And it's something that should be clearly spelled out not just to PALS but any patient when deciding whether or not to go on the ventilator.

 

[abbas child]

Has the law been changed since your vent... or is this not a law back where your trache and vent was done? I agree with Ted, Joel. This really stinks, and I'm so very sorry.

 

[brooksea]

What does the ALS Society of Canada have to say about your situation? Since it is clearly written in the manual, seems that they should know what they are talking about.

I don't understand how socialized medicine would work this way.

I hope you will keep us informed of your situation, as we all love you and wish you the best!

 

[Judith]

This does sound as if somewhere down the line, there is miscommunication. How can you not request for artificial life support not be removed, especially if the one asking is the patient?
i would contact the ALS Assoc., tell them what your dealing with and what their own manual states as Barry G's post states.

 

[fba75]

We have exactly the same issue in France, once on vent, nobody will get you out, no matter what. I found it very disturbing and counterproductive. How can you accept to be put on vent knowing your disease will continue eventually to a complete locked in and you won’t be able to get out of vent when things get too hard for you…

In France, the issue is not suicide. The problem is, usually with ALS, when you want to be put out of vent, you are unable to do it yourself. Somebody have to do it for you and in France, this is murder.

 

[irismarie]

so the lesson is in this horrible horrible, disgusting situation, to let go before you get on a vent. what a life! but my lot here in UK are throwing up their hands at the thought i refuse to eat etc, not getting a peg and my hands nearly gone. what a life! what a silly world! sending you much love, all of you, al in particular

 

[pudge44]

I want to know what the law for this is in the USA, Joel & Christine I am devastated for you both, it is enough that you have both battled through this disease and to me you are BOTH heroes, but to now have to deal with such a personal choice ( which should be yours and yours alone) makes my mouth drop, Don and I send our personal love to you and I pray you are uplifted to the lord in this very difficult time, <<<<hugs & kisses>>>>>>>