Futile Care. Dead is dead.

Trauma-tizedRN · Nov 21, 2004

My mom is in an advanced care hospital right now. She has a perferated ulcer and wasn't expected to survive the surgery. She did, that was about three weeks ago. She has an NJ tube feeding, is on alternating CPAP and SIMV (?) so that she can have periods where she breaths on her own and periods where she can rest, but still breath over the vent setting. She has a major open abdominal wound that had been sutured but dehissed so is now being left to heal from the inside out. She has drains, IVs, a foley and a trach. The last time I was in town (a distance of almost 700 miles one way to drive), I talked to my dad about making mom a DNR. He agreed, but it was so hard for me to do that, and I still question whether I did the right thing. Mom opens her eyes and is able to respond with head nods so I know she is still aware of her surroundings. She has constantly run a fever since she had surgery, been through boughts of hypotension, hypertension, ABGs that sucked, and right now she is in CHF. They had her on a diuretic, but stopped it due to hypotension. I don't know if they have restarted it yet, her BP has gone back up. It is so frustrating to me because my dad or my aunt will call me and tell me about things that are going on and ask me what I think. Well, I can't tell what is going on without knowing lab values, etc. Dad did have my mom's nurse call me recently and tell me what is going on clinically which helped me. I can tell you though from experience, it was really hard to see that DNR bracelet on my mom's arm. I did ask the surgeon to at least have the order read so that they would shock her. I guess I just don't want to see her die from a rhythm that can be converted, other than that she is a full code. Course, she does have the trach already so she can't be a do not intubate. Sorry to be rambling, but this is really hard for me. She is hanging on, but no one gives her more than a 50/50 chance of making it out of the hospital. The surgeon has been upfront and blunt about that from the beginning. I don't feel like they are just trying to keep her alive, but they area treating what they can, with what they have available. Anyway, thanks for letting me ramble. It's hard being on the other side of the coin, and knowing too much about what is going on with her body.
Pam

I am sorry to hear that your mom is going through this. How awful for her and your family. I have had patients similar to her scenario, some survive and have quality of life and some do not. So I understand your dilemma. Without knowing all of the details, it would be fair to say that none of us here could predict any type of outcome, but I will say that it does sound promising that she is able to nod and seems to understand, is able to tolerate intermittent CPAP. Bottom line is that it IS an ICU and critical patients, such as your mom, CAN actually survive with measurable quality of life. If critical patients didn't ever survive with quality of life there would be no need for ICU's, right? Your mom does sound like the 50/50 scenario you mentioned. Alot of our patients fall into that category. You just don't know sometimes so you do everything and see if they fly. Some do, some don't. It is when they decline and all that you do doesn't seem to improve the situation that becomes the real dilemma. It is hard to watch someone futily lingering, when you know that survival and quality of life is at a minimum. I agree that in your moms case, i'd too want a rhythm converted and meds if needed if not an arrest situation. Not advice, just where i think i'd be if that was my mom at the 50/50 stage and I in that boat. I don't agree when docs let families choose to do partial codes such as shock only or meds only in full arrest situations, which happens often. Why bother if you can't do CPR to circulate the drugs or intubate? Kinda crazy and very sad to be poking and prodding without reason to the last minute of life. This is no way to leave the planet. I hope everything turns upward for your mom.

MQ Edna · Nov 21, 2004

ilovehottea, my sincere condolences.
I agree with Stevierae above.
The telltale statement in your post was "but we loved him so much it was very tough to let go of someone that suddenly. our hour of need.", lets me know the heorics didn't have your uncle's best interests at heart, but your own. That is perfectly understandable and very common. You and your family can rest easy in the peace of knowing you did everything possible. But I wonder how your uncle felt and what he might have said at the end? It was his hour of need as well, and those are the needs one has to put before our own. I hope I have the strength to do it if I'm ever faced in that kind of situation.
Please don't feel I'm being understanding and unkind. A situation where someone is walking and talking one minute and critically ill the next makes it tough to let go.

Hi - I don't feel that you were unkind at all....he was transferred for a while to a rehab hospital, and the problem was, I KNEW his movements were involuntary, but it was my father knowing that his last surviving brother was in such a state, that had a very hard time grasping what went on. I think the decision my aunt made to stop the ventilation was a blessing - yes, my uncle did state that he would never want to be some sort of vegitative state if it ever happened to him....it was just so tough letting go. He was here with us laughing, being very vital and vibrant one minute, and the next gone....it's very tough for a family to deal with. I think if my uncle put his wishes into a written living will, the decision to cut off the ventilator would have been an easier one....

begalli · Nov 21, 2004

As an operating room nurse, let me just say one thing: A Whipple procedure IS palliative. It is NOT a cure. It is essentially buying time; hopefully giving a patient with this type of pancreatic cancer a few months or possibly a year or so of QUALITY time to spend with his family and get his affairs in order.

I'm very well aware that a Whipple is a palliative procedure. I advised my dad against it. Sorry to be so vague, but one thing I didn't mention is that dad's pancreatic cancer turned out to be a misdiagnosis, it was not pancreatic cancer. If I could only tell the whole story. Four months of what we went through would make for pretty interesting reading for someone who has several hours a day for about a week OR maybe you'll just see the story on 60 minutes one Sunday night in the future.

Not only was there a misdiagnosis, there was a major surgical error and the way my family was treated; the noncommunication, withholding information, avoiding behaviors, and continued mistakes over the months just disgusts me.

I'm not knocking all surgeons. I work with some of the finest in the world. I just wish that the physicians that we dealt with would've had balls enough to help us get that **QUALITY of life following the surgery by admitting that dad was circling the drain for a couple of months and there was nothing that they could do about it AND that it was partly of their own doing. They could have done this easily by encouraging hospice when I requested to talk about it on several, several occasions! Instead they just kept digging themselves in deeper because of the mistakes they made and ended up robbing us of that QUALITY. They were trying to save my dad from their mistakes (CYA) but in the process did much more harm than good in more ways than one.

THIS is why people get pizzed off and sue....not only for the flagrant mistake but for all the bulls* that follows.

I'm not exaggerating, I have no reason to. This was my dad, my mom, and my family. This was a horrible experience that I would wish upon nobody...ever.

**QUALITY = Us caring for him at home or in an environment more conducive to a comfortable, peaceful, dignified death.

stevierae · Nov 22, 2004

I'm very well aware that a Whipple is a palliative procedure. I advised my dad against it. Sorry to be so vague, but one thing I didn't mention is that dad's pancreatic cancer turned out to be a misdiagnosis, it was not pancreatic cancer.

Well--refer to your original post, which is what I was responding to--you very clearly stated, "Dad had pancreatic cancer."

Obviously there are many and varied issues surrounding your dad's death--particularly if there was a misdiagnosis, and if a Whipple clearly was not the surgery of choice--perhaps he had a pancreatic pseudocyst, or something else mimicing pancreatic CA and probably causing profound jaundice due to improper elimination of bile? ---but it's difficult for any of us to address them and opine if you are not being upfront about those issues. However, I do realize and respect that you are in a Catch-22 situation--you CAN'T be upfront about them, if there is a lawsuit in process. I feel for you--but please don't ask our opinions if we don't have access to the complete facts. Also, if indeed there is a lawsuit in place, I'd be very careful about posting on an internet message board--you never know who is reading it and how THEY might be conected to the case.

begalli · Nov 22, 2004

Well--refer to your original post, which is what I was responding to--you very clearly stated, "Dad had pancreatic cancer."

And as I also said in that post...my mind races faster than my fingers can type.

I feel for you--but please don't ask our opinions if we don't have access to the complete facts.

Thanks for your feeling, but I never asked for an opinion.

Typing what I did was therapeutic for me in a way. But won't be doin' that anymore.

Ever feel like you're going to explode and just need somewhere to direct the energy? Ever feel like you may have found somewhere that's safe to do so and then find out it's probably not the best idea?

That's what's happened.

Maybe we needed someone like you, stevierae, being completely blunt with us during this process. I can't say that I don't appreciate your upfront-ness.

No need to instill fear in me though about who might be reading this. I'm not stupid.

Fighting for what's right and grieving is hard work, man.

Tweety, BSN, RN · Nov 22, 2004

Hi - I don't feel that you were unkind at all....he was transferred for a while to a rehab hospital, and the problem was, I KNEW his movements were involuntary, but it was my father knowing that his last surviving brother was in such a state, that had a very hard time grasping what went on. I think the decision my aunt made to stop the ventilation was a blessing - yes, my uncle did state that he would never want to be some sort of vegitative state if it ever happened to him....it was just so tough letting go. He was here with us laughing, being very vital and vibrant one minute, and the next gone....it's very tough for a family to deal with. I think if my uncle put his wishes into a written living will, the decision to cut off the ventilator would have been an easier one....

Living wills do make it easier. Especially when someone was in good health it's quite a burden on the family, because we want to know we've done everything possible before making any end of life comfort measure decisions.

Loved ones sometimes need a period of time before coming to that conclusion. I've seen people try all kinds of heriocs and then seeing the futility and the suffering it causes change their mind as acceptance settles in. But it's not an instantaneous thing. Families such as yours need time and support during this process.

:)

stevierae · Nov 22, 2004

And as I also said in that post...my mind races faster than my fingers can type.
Thanks for your feeling, but I never asked for an opinion.
Typing what I did was therapeutic for me in a way. But won't be doin' that anymore.
Ever feel like you're going to explode and just need somewhere to direct the energy? Ever feel like you may have found somewhere that's safe to do so and then find out it's probably not the best idea?
That's what's happened.
Maybe we needed someone like you, stevierae, being completely blunt with us during this process. I can't say that I don't appreciate your upfront-ness.
No need to instill fear in me though about who might be reading this. I'm not stupid.
Fighting for what's right and grieving is hard work, man.

Sigh. I am on your side, don't you see that? Feel free to PM me if I can be of any help (I am also a legal nurse consultant.) I understand that you did not ask for an opinion--perhaps you were just ventilating--but you must understand that some of us are experts in the various arenas you are addressing (my own area of expertise is the operating room, and, if you post a situation, will likely respond not only for your own information, but in the hopes that our knowledge base can be helpful to others.) I am surprised no hospice or chronic pain/palliative care experts on this BB addressed your situation, AS YOU DESCRIBED IT--that is all we have to work with, after all, but we are also adept at reading between the lines and being cognizant of the fact that there is likely more to the story then is presented on a public bulletin board.

I was not in ANY way trying to "instill fear into you" nor was I insinuating that you were "stupid." I think that you are reading things into my post that simply are not there. I am deeply sorry for the loss of your father, and, in the various operating rooms in which I have worked, we would have not only listened to the patient's and family's wishes (as I stated, 68 is YOUNG!) but also done everything we could to ensure quality of life and be upfront and honest about what to expect 1 day, one week, one month, one YEAR down the road post-op, if by God's good grace that one year survival (slim) was meant to be. Sounds like you had a bad team, and I apologize for their lack of communication and possibly their lack of skill--of course, without actually being privy to the OR records, I cannot opine on their skill or lack of it--what I know of the situation right now is all subjective. Now, please, do not go interpreting THAT statement to read that I am saying you are incorrect or "lying" as that, too, would be untrue--I am simply stating that I do not have documentation, and cannot form an unbiased and honest opinion without it. Your attorney will feel the same way, as will any experts (nursing OR medical) he retains.

kat29 · Nov 22, 2004

No wonder health insurance is so expensive. I cant help but wonder that if we did more to teach families about "death with dignity" and that sometimes its just time to go, that insurance wouldnt be a little less expensive. Especially for those of us who pay out of pocket but never ever need it!

On the other hand, theyd probably just gouge us for more. Just like gas.

stevierae · Nov 22, 2004

Oregon, where I live, is the only state in the country with a "Death with Dignity" Act--also known as the "assisted suicide" law. Any terminally ill patient is allowed to ask his doctor for a lethal prescription that he can take if/when he feels the time is right, and be assured that, by law, it will be written. (Of course, if his own doctor has moral or religious objections to writing such a script, he is under no obligation to do so--but the patient WILL get the script written by an alternate doctor who has no such dilemma.) I have read that many of the prescriptions have been filled, but there has been no real research done, to my knowledge, as to how many patients followed through with actually TAKING the lethal prescription and thus ending their lives, how many just died naturally before they got a chance to take the prescription, and how many filled it just for the comfort of knowing it was available if they decided to go through with it, but haven't had the nerve or felt the time was right just yet to carry it out.

Anyway, I am glad that we were sophisticated enough to pass such a law, and proud of the voters in my state for doing so.

arthura · Dec 1, 2004

I have been nursing for 31 yrs (RN): the last 24 in emergency and Cardiac.

What you say is both very true and unfortunately increasing.

I believe that a majority of nurses believe that "when your numbers up it's up" but are unfortunately, in most instances powerless to do anything about it. As much as we claim to are advocates for the patient and their families i believe at the end of the day the nurses want the doctors to stand in front of the judges and juries, not themselves.

It is a sad indictment on the profession but i belive that our fear of litergation (and more than us the medical officers fear of litergation) results in the last ditch effort to preserve life.

I heard that about 95% of the health care dollar goes into the last 5 days of peoples lives.

Maybe instead of having "evidence based practice" rammed down our throats we should have "Reality based practice" instead.

I'm sure you are a very reality based nurse who is very kind and caring to her salvagable patients, keep up the good work.

Arthur A

nursenatalie, ADN, RN · Dec 1, 2004

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)

KIMPEDILPN · Dec 1, 2004

I am new to the forum but would like to reply to the "futile care"thread. I am a pediatric lpn in a hospital and homecare settings and I have to agree how horrible it is to watch this stuff happen.I have come to the conclusion that #1 most people have no idea what it is like to code someone at any age and#2-with kids,they just cant let them go. 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.