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Advance Directive Terminology

kevinw

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Hi Everyone...Not sure which thread to put this under so I will start here. I am seeking advice regarding how to phrase certain things within an Advance Directive / Living Will. My main concern is not to be on a long term ventilator due to a neurological condition. But I want to phrase it that this is neurological specific and not necessarily due to any other emergency that might require a respirator, that possibly would eventually be removed.

Basically after all these years my ALSA Clinic says it's now time to get one on record and I want to be clear to separate two different scenarios. One being due to a weakened diaphragm with no chance of recovery and one stating that a respirator is allowed with the chance of recovery (is it that simple?). Attempting to avoid a grey area where it is a judgement call that a medical professional would automatically put a ventilator in to avoid any law suits.

Any idea's or suggestions of possibly how you have one set up would be greatly appreciated.

Thanks
 

Nikki J

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Hi Kevin. It is a good question and I don’t know the answer. Being as specific as you can is good. You might want to think a bit beyond the initial event too and tell people what you want. Suppose you have an acute cardiac event for example. You want to be resuscitated and you are but are intubated in the process. If you improve and are extubated and the same Kevin after ( more or less maybe a touch weaker) great. But suppose you are resuscitated and vented and then they find you had brain damage? If you are in a prolonged coma do you want to be weaned off the vent then?

There are more scenarios than we can put into writing of course but having the outline and some specifics helps

It also helps if you have a reliable person who can be your mpoa / health care proxy. If you do also talk very extensively with them so they can make choices knowing your wishes if needed

This is all so hard!
 

KarenNWendyn

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I agree with Nikki.

Your wishes need to be in writing and also discussed with your next of kin and/or other health care advocates. I also made a video recording of myself reading my wishes, so there would be no ambiguity with what I want.

Think of as many scenarios as possible and formulate those into your plans. It’s all about people knowing your preferences. What you say goes! You may also wish to discuss it with your physician to make sure the bases are covered in terms of possible scenarios.
 

kevinw

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Hello Nikki & Karen...Exactly my problem. I "think" my wife/proxy understands my point of view of not wanting to be on a long term vent due to an ALS situation. But I have historically had high cholesterol and have taken medication for it since high school. Soooo, basically a cardiac event is not out of the question and depending on the extent of the event I would want to be vented.

I guess my concern is not only that "she" will understand what I want. But in the middle of a lot of confusion something will be done in the name of medicine and will be very, very hard for my wife to convince the medical community that it was not what I wanted. Even though the ALSA Clinic will have a copy on file and will distribute copies to the neurologist and hospital records. And I will have informed the 911 Center that there are certain directives in place (and eventually a DNR).

Your right....This is all so hard trying to make sure all the bases are covered with an infinite number of scenarios.

Mmmmm.....maybe time to get a poster board and create a flowchart. It this happens do this, but if this happens do that, but then consider this, and depending on the time of day, weather outside, and the season do this....Lol.
 

lgelb

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I think you are understating your wife's influence. Intubation of a PALS is viewed as a serious thing and if she's waving your duly executed directive and saying no, it's not going to happen, in any hospital I've worked in. Certainly not at home, but that begs the question of why she called 911 if you are not looking for life-extending measures. She needs to be clear on your wishes since not every scenario's on a form as you point out, but the key is that she has your power of health care attorney and is willing to use it to make declarative statements (as opposed to punting to EMTs or docs).

Make sure you have completed your state's standard advance directive form. Some people use Five Wishes and other forms; I haven't found those useful, but worth a look. The ABA site has some nice tools, including a quiz that you and your proxy complete separately, to see if you're on the same page.

Best,
Laurie
 

Nikki J

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I think Kevin is more concerned that he won’t get intubated if he had an arrest caused by smething other than ALS Laurie.

But it is true is you call 911 they are most likely going to resuscitate.
 

kevinw

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Yeah, I'm only filling out paperwork at this point. I don't want to get ahead of myself here, just completing forms. But "Yes" I do listen to the Police/Fire/EMS scanner as a hobby and I do hear calls that go out to EMS that there's a DNR on file. So as long you take the proper steps 911 can inform the dispatched EMS squad that there is an official DNR on file and that EMS worker knows that he or she is not liable at that point.

I by no means am implying that my wife did or will do something wrong god forbid when and if something happens. I am sorry if I confused you with my question.
 

affected

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We have forms here in Australia and these kinds of things are clearly separated out - like under what circumstances you would allow life saving measures like resuscitation or a vent. So you are able to say that if there is a great likelihood you would recover, then you would allow this that and something else to be done. I'm not sure how you would word it but here we have to fill these out with a doctor who co-signs to say we understand what we have said in the directive.
 

Wilson2009

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For what it's worth, I am attaching a copy of the VA durable power of attorney/advanced directive that has options for each major medical event. Might help you decided on the wording you want in your AD.
 

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lgelb

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I had meant "yes or no," sorry about that. If she knows how you want to parse the context, she will be fine.
 
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