So angry right now. Warning: Extremely long

[HappyPediRN]

I really need to vent before I end up calling the medical director at this hour. I am NOT looking for medical/legal advice, I already know what needs to be done and I'm just so angry. (A little background...my dad was diagnosed with Hep C in 1991, but his doctor didn't discuss pursuing anything until he was hospitalized x 2 with low crits and bleeding of unknown origin despite several diagnostics including a camera microchip). He has been on interferon and Ribavirin for two months and has had trouble with his crit counts so he was put on two crit boosting drugs).

My father was admitted to the hospital two weeks ago because he passed out three times at home. EVERYTHING, including the transport to the hospital, has been the most unethical process I've ever witnessed. When the paramedics arrived to my family's house they thought my father was faking and made him walk down the stairs. They had an arm under each of his and told him "Come on buddy, help me out, you're killing us here." My father passed out on them ON the stairs and only then did they realize he wasn't faking and think to check his vitals, which showed a systolic BP in the 70s...the fire rescue team helped get him on the stretcher and into the ER. They were apologetic to my dad and the medic even came back to check on him in the ER because he felt bad. He should have felt bad. My father's crit was 14 and he spent over 24 hours in the ER before he was admitted to ICU. Over the next week he was transfused with a grand total of 10 units PRBC, I believe, before his crit stabilized at 24.1. A CT scan revealed a bleeding 5.6 cm mass on his liver, and doctor came into the ER and told him then and there it was cancer. No apology, no sympathy, just business and walked out. From that point on, he heard several different stories that it was a lesion, "could be" cancer, a mass, etc...he had several CT scans and NO ONE told him the results despite us asking. He was was seen by so many different physicans and they kept telling him different things and he just wanted to give up. He said that he knew he was going to end up dying at this hospital just like his father (my grandfather died as a result of a misdiagnosis at this hospital), so I called the nursing supervisor and told her no one is to discuss his results without consulting the family first and I explained why. She noted in the chart, but no one would discuss anything with us the entire stay except one surgeon who told me he was almost positive it was cancer because of the spot, the fact that it was bleeding, and because it grew from a shadow to 5.6 cm in 8 months. Yes, the physician missed the shadow in December and ultimately that cost my dad eligibility to be on the transplant list. The physician came down and apologized to my father, but that really does nothing for him now.

My dad ran a low-grade temp into the 100s for several days and hadn't smoked since the day before his admission, but when my mother expressed concern they brushed her off and he didn't even get an incentive spirometer until the day before his discharge. Turns out he had an infection after all. They coiled two bleeds on his liver and sent him home with a junky cough, a hugely distended abdomen, and a crit of 25. He came home feeling like he couldn't breathe and his stomach continued to grow. I had him go back to the ER because he looked nine months pregnant and he was admitted again two days ago, spent another 24 hours in the ER and went to the floor. They tried to tap him and were expecting 2-3 L of fluid but got nothing but a bit of blood. My dad was relieved because he felt like ascites was going to be a death sentence on top of everything else. Well, come to find out he does have fluid, the doctor tapped the wrong area! THEN, a resident came down and told my dad he DOES have cancer, and he called my mom bawling. My dad asked him how he knew and do you know what he told him? His exact words were, "Oh, I just know. I've been around this kind of thing for two years now." OH. MY. GOD. I'm so furious. TWO YEARS?? That's it?? TWO years of experience gives you the right to throw the "C" word around as a definite diagnosis?? The chief of surgery came down and apologized to him that his physicians were using the word cancer with him when they didn't have a definitive diagnosis. They were not able able to biopsy his liver last admission because of the bleeding issues so they are going to test the fluid for cancerous cells.

I am FURIOUS that a misdiagnosis may be the reason I lose my father. I'm even more furious that sent him home last week with no answers, no support, insufficient pain control, no psych or social work consult to help deal with this devastating news, and too many interns and residents who are trying to play God with diagnoses and prognosis without any solid evidence to back it up, just "two years of experience". I'm NOT letting him get discharged this time until we sit down and have some kind of diagnosis and a treatment plan, even if it's just palliative care. I'm not unrealistic, I know that he has a very poor prognosis if it is cancer, he does too and so does my mother. We're all on the same page, we just need to get on page with his team. I don't appreciate everyone passing the buck. Here we sit two weeks later, no answers and no plan....they still haven't even tapped him or even discussed it yet. When he was in the hospital last admission it took THREE days to finally get him to CT scan and whenever we asked when he was going no one knew or had any idea why he hadn't gone already! They also made him NPO and it took four days to get any IVF running! His poor mouth was so dry he begged for ice chips to dip a swab in, and some nurses would let him and others would tell him no because he was NPO. There are so many other things but these are the issues sticking out in my mind right now.

I plan on calling the chief surgeon tomorrow and I REFUSE to be brushed off. I want all the students and interns off this case (he is at a major teaching hospital), I don't want ANYONE giving my father diagnostic information EXCEPT for his liver surgeon. They are treating him like he should have expected to get cancer and it's going to stop. If that's what he has then they are going to muster up some compassion and treat him like he's a husband and father whose life is about to be cut far too short, and they are going to treat us like we are about to lose the husband and father who we love more than anything in this world. I don't expect a miracle, I really don't, and I'm not trying to pull the nurse card...just the humane and compassionate one.

If you made it this far I thank you from the bottom of my heart.

[uscstu4lfe]

i am sorry to hear that your father/family/you have been treated this way.

[bossynurse101]

More power to you. Way too much "casual" medicine going on these days. Good luck and hang in there.

[Wise Woman RN]

I am so sorry for all of your bad experiences. I wish I could say more to make it better for you, but I am sure that there are many, many people on this board who are keeping you and your family in their prayers...

God bless you all...

[BinkieRN, BSN, RN]

His case sounds very mismanaged. Too many people doing too many things. I would talk with his case manager, his primary physician and go to medical records and ask for a copy of the CT report. No one can tell you with 100% certainty that he has cancer unless a biopsy has been done.

I'm sorry you're going through this, I can feel your sadness and frustration through your words. My heart goes out to you in this most difficult time. Please keep us informed. I care

[mondkmondk]

Oh my heavens! If I were you I'd be very P.O.'ed too. Actually, if I was in your shoes, I'd transfer him to Mayo or somewhere else. How big is his abdomen now? I can't believe he is getting such sh*tty care there. I would definitely be talking to a medical director, administrator, somebody...and possibly an attorney too. Keep a journal and take it with you to the hospital...every doctor that talks to you, write down what they say and what their name is....this sounds like a possible lawsuit against the hospital.

Oh my goodness...I'm so sorry you have to deal with all this....but you are being very active in your dad's treatment and plan of care; that I commend you for. I don't know what else to say; keep us updated and I'll send some prayers for you and your family and your dad too.

Blessings, Michelle

[RNfromMN, BSN, RN]

Wow, October, I don't know what to say...how awful. I can't believe they haven't done another tap yet...what's the reasoning behind that?

I sincerely hope you can get somewhere on the phone tomorrow.

[JessiekRN]

Oh. My. Gosh. Words can not express how angry and frustrated I feel for you and I can not believe such inhumanity and cruelty exists. I am so sorry, so sorry, for what you, your father, and your family are going through and I will have you in my thoughts and prayers. I don't think I would have the strength to see my father treated that way, no person deserves to be treated that way. Is there any way to change hospitals at this point.. please let us know how things turn out.. I am thinking of you..

[Acosmo27]

Im so sorry you are going through this. Do what you have to do, I can tell you are a great daughter and your dad is lucky to have you on his side. My prayers are with you and your family. :redbeathe

[lakepapa]

Wow, what a nightmare! Have you demanded a conference with Faculty? Patient Advocacy/Affairs? I too work at a very large teaching hospital. Don't waste you time with residents, get the Department Head involved.

Good luck and God bless,

[Selene006, BSN, LPN]

I wish you the best during this terribly frustrating time! A little bit of compassion can go a long way, and the treatment of you and your family is heartbreaking. I will keep you in my prayers!

[plumrn, BSN, RN]

Just wanted to say how sorry I am for your families experience. I think you are on the right track with your plan. Hope your father gets the care he deserves and answers to all your questions.

My Mom was in the ER recently and then admitted due to nearly passing out twice. I saw so many disappointing events occur that it really scares me to have any of my family in the hospital again without someone knowledgeable in healthcare to stay with them. Lack of experience in the staff, delays in care, sheer lack of compassion- I'm getting mad all over again. I really believe some of the problems- but not all- are caused by understaffed, overworked staff.