Many of us, in putting our personal affairs in order after diagnosis, establish a living will and advance directives covering procedures that we may be confronted with. The Do Not Resuscitate (DNR) statement dictates what lifesaving measures may or may not be taken in an ambulance and/or hospital. Most PALS end up choosing not to undergo long-term mechanical ventilation (vent with tracheostomy). Every state has a different approach and language in the form that all of us should have displayed in our house describing our preferences. There is a high variability in the description of the various resuscitation measures (defibrillation, intubation, etc.). In Virginia, the form does not make a distinction between various types of resuscitation. The Catch-22 for me is that the way my DNR is written, I have to rule out all forms of resuscitation; this means that if I had a heart attack, the EMTs would not be allowed to defibrillate. If I opt for resuscitation, they can do any procedure they want. Research shows that about 5 % of PALS end up trached and attached toa vent; half of that group got their vents, without prior informed consent, when they went to the hospital for a serious medical condition.
I would very much like to hear from other PALS about whether or not they are aware of this dilemma. My hospice doctor tells me that the only way to avoid my dilemma is to not get in the ambulance or go to the hospital. Heart attack victims, for example, often get intubation as well as defibrillation.
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Hi....I am going to put a link to your blog on my blog, which is also about my journey as a PALS[dx 1/04]
http://fernals.blogspot.com
Anyway, I had a visit from a hospice nurse a few weeks ago because i requested thru the ALS clinic, to get started with hospice. Previously, I had discussed the DNR with my ALS nurse and ALS neuro. They both told me not to do a DNR because I am still strong enough to bounce back from a pneumonia, mucus plug, or infection. They both assured me that, in case of an emergency room visit, they would be very truthful with me as to my chance of full recovery. Incidentally, I have chosen not to trache, so in case I am intubated with no chance of recovery, it would be palliative care from that moment. Yes, the DNR decision is very complex. I currently have a fellow PALS in a hospice/hospital setting that I feel was pressured into signing a DNR by his spouse. When I went to visit him, he said that he was concerned because he wasn't hooked to monitors and was afraid that no one would come if he went into cardiac or respiratory arrest. His wife told him some "cock and bull" reason, then turned to me and whispered "he signed a DNR, but I don't think he gets it".....very nice, i thought....
We have to be very aware of the implications of what we sign. thank you for bringing this to everyone's attention.
fern in ny
Oh boy, horror stsories abound! I work with PALS as a patient services coordinator for the ALS association. I certainly bring up the issue of needing advance directives with new patients. I don't know what all the various state legalities require or prohibit but I would certainly be interested in hearing how people have navigated this issue. It must be hard enough to try to decide what kinds of intervention one might want but the specifics of what and how and when must be overwhelming.
Thanks for bringing this up Tony. I will watch for other's comments.
Ellen
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