Futile Care. Dead is dead.

[MrsWampthang, BSN, RN]

We have a similar experience on our floor now. I work on a surgical floor and we have a patient who is 60 something days post op from complete removal of her small bowel secondary to necrosis, septic and almost dead pre-op. After spending 34 days on a vent this poor soul is on TPN, wound vac, insulin gtt with every 2 hr CBG, raging antibiotic resistant infections and recurring systemic yeast infections from the futile attempts at erraticating the infection which you can smell despite how well she is cleaned. This patient has incessant diarrhea (CDiff) and when the family comes we get reemed out because "mama smells" and insisting she wear a gown they bring from home because she just doesn't look like mama in that hospital gown, of course I refuse, but they will put it on anyway cuz Sally Jane (not her real name) put this here velcro on the sleeve so it can get over the lines!!!. Poor mama is minimally responsive except for the groans and tears. When I am am providing care I am continually apologizing to this lady for changing the dressing on her abdomen, sticking her finger, she will make eye contact with me and I feel like she is begging me to stop. The surgeon has made multiple attempts to convince this family to make her a DNR but they want everything done to keep mama alive, constantly telling him to not let mama die. The doc is in the process of finding another doctor to take over her care because he is blunt enough to tell the family that this goes against every fiber of his being. She has swirled around the tubes a couple of nights threatening to crash and this doc just wants to turn her care over before we have to resucitate her and go down the road of the ventilator again. Would you be surprised to know that it has been very difficult to find a physician willing to take over care? Maybe you should give me the names of some of the physician's you guys are talking about who keep hanging on.. (j/k)

Unfortunately for the patient, the family has no one to give them a reality check and make them truly understand what those labs, medications etc. mean to her overall condition. Not that I don't think the nurses and doctors have tried, but families hear what they want to hear and in this day and age of shows where people literally "come back from the dead," it is hard for families to realize that there isn't going to be a miracle occur. The patient you described could have been my mom a week ago. Except, believe me, she wasn't! It's just that almost everything you described, my mom had. Wound vac, vent, numerous IV meds, numerous rounds of ATBS etc. And maybe I was just as guilty of not letting her go sooner, but two weeks ago she was able to look at me, focus on me and mouth words to me. I'm a nurse, but there is no way I would have said "let her go." This past week she took a turn for the worst, and the next time I saw her, I knew she was no longer "in there." I knew that it was time to let her go. It was the hardest decision I have ever had to make, to tell my dad that it was time to let her go. Had I not been there, he would have let her be put through dialysis, and she would still be on vent support, with numerous IVs going, ect. He didn't understand the meaning behind the lab values that were way off the chart, he didn't understand that when she opened her eyes, that she wasn't looking at him. As of this post, she is still hanging on, which I doubt will go on much longer, but she is breathing on her own, and has only a TKO IV attached to give her medications to keep her comfortable. It has been about 5 days since we took everything off and I'm glad that my dad has had enough time to adjust to letting her go. If she would have passed away as soon as we took her off everything, I don't know that he could have handled it. It actually would have been harder for me too, since I was the one that convinced dad that it was time to let go. Now I know that it up to God's time when it is time for her to pass away, she's not just being kept alive anymore. Anyway, I guess the point of my story is this: please try not to be too hard on the family, I don't know if you have, but show them the lab values on her chart and explain to them what they mean. My dad was told my mom's lungs were "congested." No one ever bothered to explain to my dad what that meant until I came down and had a talk with the lung doc. Show them her chest xrays and explain to them what it shows, or have her doc do that. Show them her wound and let them see how painful it is when you change her dressing. Let them see how she cries when you turn her. They only see her when she is clean, and all prettied up. Let them see what you see when you are doing her care and maybe then they will decide that it is time to end her suffering. Just a suggestion, but maybe if the family actually sees clinically what is going on, rather than just hearing it, they will understand better. Good luck to you and I hope that poor women finds peace soon.

Pam

[BeenThereDoneThat74, MSN, RN]

i recently had a 27 month old who was found floating ia a contaminated swimming pool. tha paramedics coded him with more meds than i've seen an adult coded with.he ended up neurologically devestated.his parents had him a full code, trached,gt,d and so on.some brilliant doc suggested if they put him in a hyperbaric chamber he may regain some function (this is 7 months after the accident)so, they sold their house to pay 2g's a pop at a chamber in a strip mall!in 5 years of peds, that was a hard case!i went in one night to give him one of many narcs he was on due to storming episodes and found mom crying(he is her only child).she says to me "he just smiled in his sleep-he's never done that since the accident".i was speechless for the 1st time ever. what could i say to her?that was so sad.i'm a mom of a 2 and 5 year old and i hope that i would not do that to my child but then again,i dont know. but definately a huge moral dilemma.

i've seen a few "near" drownings (i hate that expression) in my career too. i know a "near" sids case (never heard of that one- the kid was found in the crib dead, and was rescussitated- six years ago- and is still "alive"). i guess your instincts to "do something...anything!" kick in at that moment. i know i'd probably feel the same way. but when the dust settles, and a month or two (or 12) later when it's time to be extubated, and the kid fails extubation, and needs to be trached, that's when you hope you can make that decision.

last year (two days before christmas) a 16 y/o came into the picu, s/p mva, which killed her friend instantly. she held on for a month, and after unsucessful extubation (and other complications) the parents let her go. all i could think of was if they didn't let her go, what she would be like right now: at a ltc facility, trached and lifeless. it can't be an easy decision, especially if you believe in faith and miracles. i personally don't think i could have that much faith.

[payday]

I would love to see a movement in this country back to dying with dignity. The senior center here does projects and activities together. I think an educational activity would be to go into an ICU and see the near dead on ventilators, smell the smell, see the stage four wounds, .... . One freezing winter day last year , a 90 plus sweet little old lady neighbor of mine came home from the hospital after going in to get a peg tube. She did not want this as she only had a few weeks left of life, with her yellow skin and advanced mets, but her family wanted it. What an ordeal for all involved for a few weeks --- For the poors souls living in nursing homes for years on end with help of feeding tubes well I truly feel that that's not "quality of life." The administrator talked to me several times about peg tube and hydration for MIL because to paraphrase her "she recognizes you when you walk in, so she does have quality of life" To me that aint much of a life.

[BeenThereDoneThat74, MSN, RN]

I think an educational activity would be to go into an ICU and see the near dead on ventilators, smell the smell, see the stage four wounds, ....

A little scary sounding, but likely to be effective. Also a good lesson in why you need advanced directives.

[Elenaster]

I think an educational activity would be to go into an ICU and see the near dead on ventilators, smell the smell, see the stage four wounds

A "scared straight" program for seniors... All kidding aside, we'd have to send their families with them and have them say "I NEVER WANT TO BE IN THIS CONDITION." I've had so many elderly trauma patients' families go against their advance directives because "Pawpaw wasn't supposed to go like this." Like some awful terminal disease or a big MI would be a better way to die?

I know alot of what I've said sounds callous, but I've walked in their shoes. My family and I had to make the decision to make my mother a DNR when she had terminal CA, and it was one of the most painful and difficult decisions of my life. Now, nearly ten years later, I'm grateful to that kind oncologist for being truthful with us and allowing palliative care to take over. Having been on both sides, I can honestly say that a morphine drip and your family close by is a much more peaceful way to go than with someone thumping on your chest.