Futile Care. Dead is dead.

begalli · Nov 19, 2004

Trauma-tizedRN, and the rest of you....I sure wish my family had nurses such as yourselves advocating for us when my dad and my family were going through what we recently went through.

I can relate to the topic of this thread from both perspectives.

As an ICU nurse it breaks my heart to do the things that we do to some of these old folks. Just a couple of months ago we had an admit from the OR who was a 92 year old with a ruptured AAA. First of all, anyone with a ruptured AAA is going to have a hard time in recovery from this giant and emergent surgery. But I just can't figure out what the surgeon was thinking when he agreed to do this procedure on this poor 92 yr old man. Of course he had all the post-op complications, he stroked post-op, ended up pegged and tubed with dead bowel and vent dependent. He eventually died after weeks of what I would call futile care.

Now my dad, who just turned 68 at the time of his death, and my family I feel, were robbed of the opportunity to employ hospice to help us along on our journey to my dads death. Dad had pancreatic cancer and had a whipple procedure done on July 6th. The doctors painted a curative picture up to the last moments of my dads life and would not even discuss hospice or palliative care with me.

They didn't tell my mom they thought dad was on his way out until just a couple of hours before he actually died. Of course all along (he was hospitalized for 4 months) I kept telling my mom that one of the outcomes here is death and maybe we should be looking into hospice or palliative care (but why should she when everything she was hearing from the doctors was positive?).

The doctors NEVER talked about palliative care. Niether did the nurses, as a matter of fact these nurse were woefully lacking in the psychosocial aspect of nursing and these were among the worse nurses I have ever come in contact with! Among other things, we had nurses attempting to fulsh a picc line with heparin when my dad was HIT postive, we had nurses literally afraid to do a wet to dry dressing change on the open wound that was once a chevron incision that dehisced (sp?) so dad would lay there for literally hours in his own digestive enzymes, we had nurses who would not question dr orders for dc'ing pain meds d/t bp issues when it was more than obvious this was a human being suffering. Give him a damn fluid bolus, start some dopamine, but DON'T D/C the pain meds!! (My mom starting taking notes at one point. She was told by a doctor that" he would rather have him in pain than looking like that." Meaning dad was a bit out of it at times, he was freakin' septic! Of course he's not going to be able to recite the Declaration of Independence but he could nod his head yes or no to pain!)

When I was in town (I live 2000 miles away and flew out there 5 times in 4 months), I actually gave informal inservices to the nurses and medical students on how to do the dressing changes, brought up pain control and got the pain service involved, got an antidepressant and antipsychotic ordered (dad was hallucinating at times, especially at night), got a sleeper for him, got them to decrease his nicotine patch on each of 3 consecuative visits I made (they needed me to prompt them to do that?), got orders to take him for 15 minute walks in a wheelchair (he was on a continuous wall suction for wound drainage--the nurses wouldn't even let him out in the hallway because it meant disconnecting the suction for a few minutes!!), got an order for him to have popsicles. This is just some of the basic, BASIC stuff that wasn't getting done when I wasn't there!

Just to clarify something...I was NOT the pushy healthcare experienced type of nurse family member. I wanted nothing more than just to support the people who were caring for my dad. These nurses were obviously overworked. I would frequently see the same nurse every day of my visists and I when I went out I would stay at least 2 weeks at a time. One night dad's nurse started out a 12 hour shift with an assignment of 3 patients. By the end of her shift she had 10!

From the beginning dad had a difficult and complicated recovery. He developed a fistula, an abscess, his incision dehisced and he became septic. He was in and out of CHF and kidney failure. One thing we did do was to change his code status from full code to no cpr/co intubation (and then they had the nerve to ask my mom if they could take him back to the OR [for the 4th time] for wound exploration = intubation!). C'mon.

There's even more to this story (there are some medico-legal aspects here that I can't talk about), but after all that dad went through and the false hope that was perpetuated by these lousy doctors who didn't have the balls to be forthcoming with my family, after all this, they didn't even allow me the 12 hour notice I needed to get out there so I could be there at the time of my dad's passing. Even if they were wrong about predicting his death, I wanted to know so I could be there and I would have been there haad they just told me what they were thinking.

According to them, they called my mom early that morning but she was she was apparently in the shower...they didn't leave a message. She went to the hospital her usual time that day (she was there every single day for 120 days for 7-8 hours/day) and when she arrived she noticed that dad was having a bit of breathing difficulty (in hindsight now, I'm pretty sure it was agonal breathing). I just happened to call that morning and she told me all of this so I said let me call the resident and find out what's going on. I asked her if he was getting breathing treatments...little did I know! So I called and not once did the resident mention to me that my dad was actively dying and that come to find out later, they thought he wouldn't make it to the end of the day. I actually talked the resident into speaking with my mom about palliative care...I had no idea!! All he told me was that my dad was in kidney failure. I told him that my mom probably wouldn't agree to any dialysis and he agreed that they probably wouldn't try that. Never once did he tell me that I should try to catch a flight asap. They knew I was far away. They knew me very well as a matter of fact. Up to that point, I was the person who they gave all the technical information to so I could break it down into terms my family could understand (something else that bugged me--why couldn't they do that--why was it me?)

So okay, I thought to myself, FINALLY, finally they're going to tell mom what I've been saying now for about 2 months. We FINALLY get to try to get dad out of there and bring him home or get him into a different environment so he can die in peace.

But then just two short hours later I got a barely audible call from my brother..."It's over" he said, "dad's gone." I couldn't believe it. I mean I could, but I couldn't believe that no one had the courtesy to give any of us the heads up. It's not like this was a sudden thing. My dad was in this hospital for 4 months. Fortunately, my brothers were there. They all live and work in the area and after the resident had the talk with my mom, she called them for support. So instead of being talked to about palliative care (like the resident and I talked about), they told my mom that they were giving my dad to the end of the day to live.

I don't think that the family can always be blamed for prolonging the inevitable. Being honest and realistic about an outcome and getting that information through to the family is the responsibility of the healthcare professional = the doctors. They failed miserably in my dad's case. Maybe it would have been different for us if they hadn't screwed up (the medico-legal thing). But I really don't think that it matters, dying is dying. Fortunately, my dad died without a vent or pressors or heroic measures. But a cold hospital bed isn't what we had in mind either.

Thanks for reading my story. It's probably not very eloquent, but my mind races faster than my fingers can type when I think about this. Dad died 3 weeks ago today. It's all still very fresh and I think I'm more angry right now about the fact that they robbed me of being there than I am about the fact that my dad died.

Pediatric Critical Care Columnist · Nov 19, 2004

How awful for all of you. Bless you for not letting it go.

begalli · Nov 19, 2004

Thank you Jan. No, we're not letting this go. To do so would be to dishonor my dad.

I guess my whole point of telling my story is to say that it's not always the family who wants to do everything. I believe firmly, especially with surgeons, that they cannot admit defeat and becuase of that people suffer. I work with some such surgeons. I also find it to be worse in a teaching hospital where they will do everything they can just to get the "practice." In critical care, this happens all too often. I'm frequently finding myself asking the docs, why on earth does this little terminally ill 80 or 90 something year old lady need to be swanned? And then what's worse, is that the newest person on the team performs the task and ends up not being successful which turns this procedure into an hour or longer unnecessary assault (assault with a deadly weapon, if you ask me).

manna, BSN, RN · Nov 19, 2004

I wonder if some of the people who are aware of advanced directives avoid putting them into place because they're not comfortable with their own mortality?

I'm just a nursing student, so I haven't experienced a patient's death yet... but this conversation just reminded me of a radio talk show host I'm fond of who often speaks about the fact that often people don't buy life insurance because they're afraid of death.. then goes on to say, "face it, nobody gets out of here alive."

MQ Edna · Nov 21, 2004

One of the most challenging ethical dilemmas for me. I just HATE participating in it. We get so many patients in the ICU setting that prove to us in so many ways that it is JUST TIME TO DIE! But no, for whatever reasons ie: Doc is a super god..saves everyone, doc is too wimpy to call it to a stop, families running the show and docs letting them...and other various reasons, we get to come to work everyday and poke and prod these poor souls. Costs the system alot of money too. I don't go home feeling like a good nurse when having to do this. In fact I feel really bad. I am pretty aggressive about it and corner these docs and families for a "chat" to help bring some reality to play, but sometimes have to get ethics involved to make any headway....docs don't appreciate it either. But geez people...we are maintaining dead or dying people with all the bells and whistles, for weeks on end. Can't we just let people die when they ARE. Treat pain and suffering....not cause more. Never a good day when you get to work and the buzz phrase on the unit is "I see dead people"
:angryfire

Hello, I am new to this board and to nursing in general. Unfortunately, I do not agree with your sentiment. With all due respect, I had a family member in this condition, and I wholeheartedly praise every day that both the nursing staff and the physicians at the hospital this relative was sent to did everything humanly possible to keep my uncle alive for a little while. He was my most beloved uncle, and he had an aortic aneurysm that ruptured....he could have been easily written off, a cost undone by the hospital machinery. However, the staff (BLESS THEIR HEARTS!!) did everything in their power to keep him alive. We KNEW he was alive, and probably didn't want to be a burden on anyone, but we loved him so much it was very tough to let go of someone that suddenly. I am trying to be nice, but try to remember the other side of the argument when you feel that way. You may be dealing with an emotionally traumatized family member who just doesn't want to let go, and that the case probably isn't "dead on arrival". After all, you all have to follow that hippocratic oath whatever it takes. All of you, I give you credos and my best. I hope to become a nurse someday - I am going through the prerequisite courses first before I apply! And the REASON why I am going into the nursing profession is YOU all, you BEAUTIFUL PROFESSIONAL CARING people who took such care of me and my family in our hour of need. God bless every single one of you!:)

zambezi, BSN, RN · Nov 21, 2004

I believe firmly, especially with surgeons, that they cannot admit defeat and becuase of that people suffer.

I agree with this statement, except that I don't know if I would call it defeat. In defense of the surgeons that I work with, I do feel that they really are caring and want their patient's to do well...but I do think that they go way overboard at times, especially when all of the signs point towards death. There is a time to let go and progress to comfort care and helping the family transition--and that is okay, it is not a defeat...people cannot live forever. I do feel that often times patient' s suffer because of this prolonged medical care--weeks of ventilation and multiple organ failure, etc...even if they do "survive" what is the quality of life going to be?? I will say that I give most docs credit because I can see how it would be hard to have to make these decisions in some cases when everyone is looking at you and depending on you for the best plan of care.

I was actually in this situation just last night. With one of our surgeons that does ever not want to let go on any of his patient's. He typically has a "30 day" rule which means that after he operates, the patient is a full code despite what else might be going on.

I am glad that the other two consults (renal and vascualr surgery- yes they were planning on taking the patient back for a bowel exploration) both talked the primary surgeon into talking with the family about a change of code status (after a very long code earlier in the day with poor outcome--epicardial pacer dependent/remained vented/horrible blood gases/renal failure for which crrt was started and wasn't helping/pupils fixed and dilated/mottling from abdomen down, etc) The family agreed (thankfully because I did not want to code this patient again). About 30 minutes after they agreed to change code status, my crrt filter clotted (which we knew was going to happen). The family chose not to restart and within 20 minutes the patient passed on. The family was at the bedside the entire time and didn't have to see us coding their loved one (again)...I am thankful that the surgeon talked with the family up front this time because there was really only one end that this patient could have had and I am glad that the family was there to be by his side and that he could pass on with his family holding his hands instead of us pushing on his chest--he had been through enough.

MrsWampthang, BSN, RN · 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

stevierae · Nov 21, 2004

Now my dad, who just turned 68 at the time of his death, and my family I feel, were robbed of the opportunity to employ hospice to help us along on our journey to my dads death. Dad had pancreatic cancer and had a whipple procedure done on July 6th. The doctors painted a curative picture up to the last moments of my dads life and would not even discuss hospice or palliative care with me.
They didn't tell my mom they thought dad was on his way out until just a couple of hours before he actually died. Of course all along (he was hospitalized for 4 months) I kept telling my mom that one of the outcomes here is death and maybe we should be looking into hospice or palliative care (but why should she when everything she was hearing from the doctors was positive?).
The doctors NEVER talked about palliative care.

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. Now, there are NO guarantees. They may spend 8 hours doing a Whipple, only for the patient to develop liver mets a month or so down the road and succumb to them, rapidly.

I have been in far too many situations in which we did a Whipple despite the surgeon's best judgement, simply because the family insisted that he do "everything possible." I have done Whipples in which we opened up and saw liver mets, but the surgeon proceeded with the family's wishes to do "everything possible." In truth, we probably should have just bypassed the patient to relieve his jaundice, which is usually pronounced at the point, and allow bile to breakdown properly--at least for a while. Don't fault the surgeons too much. They are human, too, and sometimes they hope for miracles, too. So do the operating room nurses. We are a team. They often look up at us and say, well, what do you think? We either say, let's close, let's bypass him, or hell, let's go full speed ahead--he's only 68 (that's young, in our view--) and give it our best shot. The family will feel better knowing that we did, and, hey, miracles are known to happen.

stevierae · Nov 21, 2004

Hello, I am new to this board and to nursing in general. Unfortunately, I do not agree with your sentiment. With all due respect, I had a family member in this condition, and I wholeheartedly praise every day that both the nursing staff and the physicians at the hospital this relative was sent to did everything humanly possible to keep my uncle alive for a little while. He was my most beloved uncle, and he had an aortic aneurysm that ruptured....he could have been easily written off, a cost undone by the hospital machinery. However, the staff (BLESS THEIR HEARTS!!) did everything in their power to keep him alive. We KNEW he was alive, and probably didn't want to be a burden on anyone, but we loved him so much it was very tough to let go of someone that suddenly. our hour of need.

But what was the QUALITY of that life? Often after a ruptured AAA, circulation to the legs dies and these poor folks come back to the OR for below the knee amputations and then above the knee amputations. They often succumb to sepsis from decubitus ulcers, ARDS, MRSA, VRE, multiple organ failure, or just plain old garden variety community aquired pneumonia, any of which can be epidemic in ICU or long term care settings. I learned many years ago that there are things far worse than death. This "life" that these poor people are suspended in is one of those things.

To keep these poor people from the inevitable because YOU (meaning anybody, not "you" personally) can't let go--because YOU love them so much-- is simply a selfish decision. Let them go. Let them rest in peace.

Tweety, BSN, RN · 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.

MrsWampthang, BSN, RN · Nov 21, 2004

We must provide dignity to both patient and family as best we can, know when to ask for another assignment, and EDUCATE EDUCATE EDUCATE the public at home, in our neighborhoods, in our churches about living wills, healtcare surrogate designees and the reality of death. QUOTE]
As Dr. Phil would say "Are you kidding me?!" Not to sound cynical, but we can't even educate people to treat themselves at home. Time after time they come to ER for things that can and should be treated at home. Why would education on end of life be any different? People are going to do what they want despite what we try to do to educate them about the right thing to do. Sorry, it's been a long night of sore throats, coughs and congestion and I'm a little cranky.
Pam

stevierae · 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.

Very well stated, Tweety.