Advance Directives - AKA Living Wills - power of attorney - my thoughts on these

For ethics I have to read two positions on this. Funny thing is is that I have personal experience with this - outside of my role as a nurse.

About 3-4 years ago my mom's good friend Jane (not her real name) - her husband Joe (again not a real name) was walking about 15 minutes from home to go to the local coffee shop (Tim Horton's for us Canadians) where he would meet up with his chums for a morning pick-me-up. He reached the traffic light, pressed the button and when told to cross he did so. Unfortunately at the same time was a young girl who went through the (green for her) light and struck Joe. He was thrown about 15-20 feet and landed in a snow bank. EMS showed up and rushed him to the local hospital. He was stabilized and was discovered to have a massive head injury that required immediate surgery. We live in a (smallish - approx. 75, 000 pop) community that does not have a brain surgeon so he was air lifted to the closest center that could perform this - happened to be in the US. So there he went. Well his wife was notified and off she went to the US to be with her husband. She permitted them to do brain surgery and he was intubated (naturally) and was ventilated for his surgery. The surgery went according to plan and he was brought back to the ICU. He was touch and go for several days and when they tried to take him out of the medically induced coma he would not regain consciousness. He was in an actual coma. He remained this way for several weeks. When he finally DID come out of the coma he was found to have major brain trauma which stripped him of his ability to function - approx. 25% of what he was previously. It took him almost 2 years to be able to even slightly talk (remembered how to curse though which is hilarious) but he had a feeding tube and ended up also needing a catheter. He was wheelchair bound and required support 24 hours a day. He was put into a nursing home for this care but his family also provided for him additional care during the day hours so that his therapists could work with him more personally and often and TRY to regain some function. Then he started to get complications upon complications. This inevitably caused his death. During some part of this his wife was notified that she was NOT allowed to make decisions in regards to his health OR expenses because they had had NOT created a power of attorney, living will or advance directives and so someone else had to make these decisions PLUS she had to go to court in order to get these right given to her (as it should have been).

Because I've seen this and what Jane and Joe had to go through - from this side - and seeing what patients and their families have to go through when these things aren't put into place..... as well as when they are (it's wonderful when they have been). I would like to make it known what I would want or not want.... husband and I tend to disagree on some of it. He would like me to be kept alive (on a ventilator and everything else) so that he could be with me. I on the other hand would NOT want to be kept alive if I were to be incompacitated or diagnosed brain dead.

I had a conversation with my BFF about some of these things and we talked about scenarios because I told her in no uncertain terms that I would NOT want a tracheostomy. Well she made me realize that I would ONLY want it if it could come out - and I would only allow it for 30 days (ever seen the episode of Grey's anatomy - 30 days and that's all I get - if you can't figure it out by then I'm being taking off support) then take it out and if I live then i live - if not I die and I'm ok with that. Clearly I wasn't meant to live.

Now the ONLY time I want to be on a ventilator and kept alive is if I were pregnant and the fetus could be viable and NORMAL (no cerebral palsy due to hypoxemia) then keep me alive until I could "give birth" then take me off life support.

Now if I were expected to live but have some deficits - if I could be expected to be at least 75% of who I was previously (mental faculty wise) then do extradinary measures. If I need antibiotics - please give - I completely agree with them. Don't give him a G/J or any other kind of tube to extend my life. I see enough of this at work and do NOT agree with it. I WANT to be able to drink and eat the "normal" way and if I would die if I didn't have a tube going into my body then that's not the way I would want to live. Again if it's longer then 30 days - let me die! When it comes to tests - do them, do as many as you can to try to figure out what's wrong with me and try to fix it - I'm ok with that - I like tests, it makes treatment easier and WAAAY more effective. When it comes to CPR it's a bit trickier - inately I agree with CPR. However, the longer that CPR is done, the less likely it is that mental faculties will be back to 100% so really, would I want extended CPR?! I suppose I will have to ask a doctor about this to truely know what my answer is to this one. I agree 100% with dialysis and pain medication - I think these things are totally important. I can't think of other things that should be included but I will totally update these kinds of things as I learn and see more.

I think MORE people should put it in writing what they want. And try to think of ANY and ALL kinds of situations.

Withdrawing care & comfort care measures

I've spoken about this before, but we see it ALOT on our unit. Because we have many stroke patients come through our unit, it really gets to me that ppl don't know how to bring up this subject.

Why is it so hard to talk to ppl about death and dying and being realistic. Why hold out hope that your family member/patient will pull through to just be a burden on the system and the family?! IMO, if God wills this person to live, they will but don't put in a NG/G/Peg tube to prolong the life of ppl. I think it's a pointless to prolong these lives.

There's one family I dealt with who their father had a stroke several years back, he lived for 3 yrs with complications before finally dying. Because of this, their mother indicated verbally (of course not in writing!) that should anything like that befall her, to make her a DNR and let her die! Well go figure, same happens to her and this family makes her a full code!!! Then when she stabilizes, the family is FINALLY persuaded to make her a DNR BUT they want to put in a G-tube.... STUPID!!!! UGH But of course I have to keep my opinions to myself and respect the decisions of this family. After a month or so, the only thng she had done was open her eyes. Not much of a life right?! Another pt we've dealt with is semi-comotose and they put a g-tube in her. It's soooo frustrating.

On the other side of this coin, we've had several where the family decided to withdraw care other than comfort care measures and these people have passed peacefully without having to suffer from bed sores, infections,etc. I relish those times.

I have also dealt with a family who had their loved one come in with pneumonia, possible TB and the person is elderly and cognitively intact and doesn't want to eat or drink. What's going to be their decision???? I think that if ppl can make decisions before they lose their minds, let them do what they want! Provide comfort care measures and end of life support and allow them to pass they way they want to!

Am I losing my touch with humanity?

Lately on our unit we've had an increase in the amount of deaths. Now I understand that eveyone has to die, heck we don't live in the age of the bible/torah/quran and live to be 800 yrs+

That being said, we've also had people on our unit who are DNR (do not resuscitate) who I can't help myself in thinking that many of these people I would rather see die... but only because IMO they are suffering.

The last shift I worked was one such case - I had a patient who's not very old - I'd say youngish, on TPN (since like 2001/02), was severely emaciated, had several comorbidities and had been in and out of units (whenever he gets readmitted he gets put back on our unit for some reason - totally unrelated to the fact that our unit is for neuro pts) for like a year+.

During this last admittance, he suddenly started vomitting blood EVERYWHERE and had to have an emergency scope to have varices in his stomach banded/cauterized. When he returned back to us, he required like 6-10 units of blood, plasma, IV fluids, etc...

To see him, he was CLEARLY suffering - and I'm thankful that he passed because you could see that not only was he suffering, but so was his family.

Another pt we've had on our unit is an older patient who is also a DNR, tho has late stage dementia. She's been on our unit for several months I think and recently became a DNR, the family was in denial about her condition for so long. This woman moans CONSTANTLY, is completely delirious and is VERY difficult to take care of, emotionally and psychologically because there's nothing that we can do to settle her. Even super strong anti psychotics don't touch her. She's REALLY difficult to feed or get her to drink and therefore she's starving herself. At least with the DNR in place, we don't have to give her a feeding tube. I'm hoping that she's passed, her family is having such a hard time seeing her waste away, physically and psychologically. They cry almost every time they come to visit but know that a DNR is the best thing to do. Thank goodness!!!

We have another lady on our unit who's on restraints because she has a neuro disorder that causes these involuntary movements. Now, in our province, no LTC (long term care) facility will take a pt with restraints, and therefore must stay with us in the hospital. This family, tho will not make her a DNR. I don't understand why, or maybe the Dr hasn't talked/pushed the family into making her a DNR. It's not like this lady's condition is going to improve, it'll only get worse! It's a terminal disorder. And I certainly don't want to be pushing down on this lady's chest when the time comes that her brain is going to deteriorate to the point where she stops breathing and I have to call a code on her, because she isn't a DNR. SOOO frustrating. I am surprised tho that this family comes to the hospital DAILY - for lunch or for dinner and personally feed her. It astonishes me because you think that that would eventually fade.

My question to you folk out there.... have you ever thought about delaying calling a code on someone who should VERY obviously SHOULD be a code????