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.

[sparketteinok]

Like everyone else, so sorry for what you've been through. Sounds like you're handling it the right way. No one should ever have to go through what you are just to get treated properly. Unfortunately, a scaled down version of this happened with my mother's cancer diagnosis. I believe compassion is lost in more medical fields than we would like to believe. A tragedy. Whatever happened to Florence Nightengale, and "first, do no harm"?

[HappyPediRN]

I spent almost three hours on the phone with patient advocacy and the executive office. After I arranged the meetings for tomorrow and threw administration into a tizzy, my father told the gastroenterology resident that he had had enough, that he didn't feel safe here and wanted to go home. He said they could discharge him or he would leave AMA. I spoke to the GI resident and my dad on speaker and my dad was almost hysterical. He said they couldn't do anything for him there, that he had been in the hospital back and forth for two weeks without any answers or help, and that he just wanted to be at home safe with his family, his pets, and his couch. The GI resident said he was stable enough to go home and was going to be medically cleared for discharge tonight anyway. She said that his crit was 25 and holding, that he tolerated the paracentesis for 4 liters of bloody fluid well and his vital signs held all day, and that all the CT scans/chest x-rays to rule out infection were negative but he's still running a low-grade fever into the 100s. I was satisfied with this but I still didn't want him coming home because he gets dizzy after walking a few feet (as he should with a crit of 25), but he sounds so much better now that he's home. He has an appointment with his liver surgeon on Tuesday. I really don't feel like I will be able to forget this or just let it go. My dad is grateful to be home alive and I should be grateful for that but I'm actually even more angry that he received such subpar care that he feels relief that they didn't end up killing him. I'm just putting it all in God's hands right now because at this moment I can't be objective and my heart is full of hate and anger.

[HappyPediRN]

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!

Thinking of you all.....:redbeathe

Maisy

Maisy, thank you so much. Your post gave me the confidence to speak to the patient advocate and executive office knowing that the interns and residents were 100% wrong in approaching my father with the "C" word. I worked in an ER also and initially I was most bothered by the way EMS treated my father. I hear the stories from our EMS boys and girls, and the way that people are treated based on their history...it's like an instant stereotype. I knew as soon what they thought of my father as soon as my mother told me she told them that my father kept passing out in pain and was on treatment regimen for Hepatitis C. After that, without even taking vital signs, they tried to force him to walk down the stairs and yelled at him to help them because they thought he was drug seeking. I know I could never prove this but I know in my heart this is what happened because I see it all the time with patients they bring into the ER and I'm disgusted. I wanted to call them up and scream at them for judging based on that information and to label my father in their heads instead of knowing the facts. He was a young kid who made some bad choices and stupid mistakes. My father is not a junkie. He's a good, kind, loving man who beats himself up everyday for the choices he made and wishes he could start his life over again. He doesn't need the callous attitude of EMS and numerous residents to serve as a reminder on top of it. Cancer is a monstrous, huge, life-altering word. Once you say it you can never take it back...I just wish they had remembered he's a husband and father with a family who thinks the world of him before they uttered those words and literally shattered his world.

[SuesquatchRN, BSN, RN]

Honey, even if he were a junkie it doesn't excuse the treatment he got from them.

I'm glad he's home. And don't ever go back to that hospital!

[RNGB]

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.

Please, please pull the nurses card, I kind of did with both my parents deaths, BUT NOT ENOUGHT I AM CRYING WRITING THIS.

but I felt happier if that the right way to put it with my dad, I and he were part of the process, but I didn't with my mum and I still feel angry she died in 1997, what makes me angry in both cases is their doctors both refused to tell them they where going to die...oh werid ,today my boys had to had a physical and maybe a shot and daddy kept saying don't tell them about the shot and I got angry and said I wouldn't lie cos my mum would'nt and I am realising my having to tell them both that they where dying was because they never lied to me...I will never forgive those doctors who refused to tell them the truth and they where both people who needed the truth.. I am crying again, how can Doctors make me tell both my parent that they are going to die when they asked me.. why would they do that...