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.
Specializes in Med/Surge, Psych, LTC, Home Health.
Not much else to say except I'm terribly sorry this has happened to your father and your family. My first instinct would be to say "have him transferred to another hospital!" but if that is not possible, you are definately correct to have all residents off of the case.
Again, I'm sorry. I really hope things somehow get better soon...
Specializes in Psych/Substance Abuse & School Clinics.
other things to consider:
-giving the patient advocate a call and insisting on meeting with them in person
-making a list of all of your concerns to go over with the advocate.
-demanding a meeting with the department head, liver surgeon, charge nurse/nurse manager, and your family
i totally agree w/this post also. you have every right to be outraged and to advocate for your father. prayers are going your way. please, as others have said, keep us posted. :heartbeat
i'm so sorry you're having to deal with this situation. it sounds to me like you're a caring, proactive daughter and that is exactly what your father needs right now. your family is in my thoughts.
First of all I am so sorry you are having this problem, there is nothing like seeing a loved one treated so inconsiderately, and like an object rather than a human being. I am so sorry for your dad, you, and your family....no one should go through this!
Secondly, I would print this post and send it to the CEO with names! This type of culture needs to be stopped-willy, nilly idiot residents should not be allowed to wander on their own. Residents SHOULD NOT BE DIAGNOSING AND DISCUSSING ANYTHING without their ATTENDING! Results should be disseminated, and discharge planning, socialservice, case management, and patient reps should be available to a family regardless if the news is good or bad. Illness needs to be managed at home too!
I would also send this to EMS, it appears they need sensitivity training too! As an ER nurse I know personally how much these guys are lifting, moving, straining etc...but that is the job they chose! They have to do it!
I would be angry too, all you can do is love and honor your father and family by being supported and kicking some butt! It will make you feel better. Thank God he has you!
here's something you can do....find an aggressive liver transplant program you trust. they may be able to do radiation on the spot seen on your dad's liver if he only has the one spot. after they shrink the spot down to a certain size (i've forgotten how big) they may be able to proceed with a transplant. remember i said an aggressive transplant program because the more conservative programs wont do this kind of thing. i've seen this approach work and i've seen it fail but at least it offers a chance. best of luck to you and your dad.
i am so sorry you and your family are going through this. how horribly mismanaged it has been is sad. i feel your frustration . i also have hep c and have been treated at major teaching hospital. it is very confusing and frustrating dealing with all the various ...for lack of a better term..."student doctors." stand by what you said...one doctor. there are way too many hands stirring this pot! good luck and god bless
Specializes in Pediatric Psychiatry, Home Health VNA.
Wow. Thank you so much for all of your support. I'm glad to see that I'm not overreacting...it can be a bit difficult to separate emotions from actions with news like this but I've NEVER seen such a cluster you-know-what as this. I took all of your advice and contact patient advocacy. We are in the process of getting his medical records and my father is giving me full disclosure so that I can speak with his physicians. The advocacy rep told me that it's been challenging to sort this out because there are so many disciplines and physicians involved...I'm like hello, that's the problem! Today they drained 4 liters through paracentesis. UNBELIEVABLE. I canNOT believe they let him go home in that condition and I can't believe they gave him false hope by tapping the wrong area and then telling him there was no fluid. Four liters. That's horrible. I'm so disgusted I can't even think about this right now. I'm waiting for a call back from the rep and a physician, and then tomorrow I'm trying to get a meeting together so we can get on the same page. I also contacted the executive office and am waiting for a call back from them too. I can't believe I have to go through all of this just to get my dad proper medical care. I can't believe this.
I am so sorry you are going through this. We had a terrible time with my father-in-law's care several years ago. We ended writing letters and faxing them to the president, head nurse, and head of the whole hospital network. It got their attention, and they straightened up a bit.
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NurseCard, ADN
2,850 Posts
Not much else to say except I'm terribly sorry this has happened to your father and your family. My first instinct would be to say "have him transferred to another hospital!" but if that is not possible, you are definately correct to have all residents off of the case.
Again, I'm sorry. I really hope things somehow get better soon...