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.
:icon_hug:I am so sorry that you and your family are going through this. I think many times doctors(and nurses) can get so jaded by what they see that they fail to realize that they are treating a person, not a diagnosis. I have had to advocate for a family member(the break room on that particular floor probably had my picture as a dart board) and it can be heartbreaking and draining..
You and your family are in my thoughts and prayers, please let us know how things go.
Specializes in Med/Surg, LTC, Rehab, Hospice, Endocrine.
I am so sorry you are having to deal with this. Everyone has posted some good advice. Write down everything, get copies of the records now, and if you can, try to get him moved. It sounds like he could be having a hard time dealing with everything on top of the fact that he lost his father there. I know how hard that can be. Everything you are doing sounds right; kuddos to you, and loves of prayers coming your way. Keep us updated as you can. We are here if you need us :icon_hug:
You of all PEOPLE have the RIGHT to BE FURIOUS with them... It's so inhumane for them to just tell you WHAT THEY THINK and then say SORRY in the end if they were wrong... LIFE is at STAKE here..
I symphatized with what you feel because I'll do the same thing especially if my parent's life is at stake..
The only thing that's bothering me is to think that, how easily they can say the word "CANCER" and not even care what the family will feel... I have friends who are surgeons and it's HARD for them is to tell a patient that they have CANCER... I mean, there should be DIAGNOSTIC PROCEDURE or EXAMS, a BIOPSY should have been done to determine the Histopathology of the tissue taken. To rule out if it's cancer or something else and it's also His duty to explain and present the said supporting diagnostic exam why HE (the Doctor) end up making SUCH IMPRESSION... Then, and there,Once CONFIRMED, HE, should be in a HASTE to REFER the patient to the Oncologists and then, the oncologists has his own say about things, what treatment and therapy he needs..Time is ticking. If it's a cancer they should be in a haste to prevent further complications.. Oh my goodness, GET a SECOND OPINION ASAP. Secure all necessary documentation and diss those surgeons and residents
2 YEARS is NOT ENOUGH to tell SOMEONE that HE KNOWS THINGS...Ugghh... And the Chief SURGEON is ALLOWING THIS TO HAPPEN??? My good ness what's up with them....All of these are happening because a doctor MISSED a SPOT?? Wow, and a surgeon is ALMOST POSITIVE??? Hmmm...
(deep breath)... they should be doing their job RIGHT... It'll cost life if they dont straighten up...grrrrrrr.. Getting mad... but be strong, I salute you for your concerns with your parents
So sorry your family is going through this. It's hard enough to have a family member ill, but when the hospital is only making is worse by mismanaging his case that's torture.
Specializes in ICU, Agency, Travel, Pediatric Home Care, LTAC, Su.
First of all, you, your father, and family are in my prayers. Big hugs.
I would agree with getting all of the students, interns, etc of this case as it has been so mismanaged. I am not sure where you live or how your dad's insurance is, but have you thought about having him transferred to a different hospital?
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 hope that you and your family get the care for your father that he deserves. Please keep us posted
I am so sorry you are going through this. I know it is extremely frustrating. You need and your father needs, to be at a place you guys are comfortable with the level of care he is receiving. I am surprised that your father's physician, the one who is managing his hepatitis C, did not discuss the development of hepatocellular cancer as a complication of hepatitis C. I believe that the numbers are close to 25% of patients with hepatitis C develop liver cancer. That might be the reason they are throwing the diagnosis around so flippantly, but again that is no excuse. My :redbeathe goes out to you and your family.
I feel for you - because I have recently gone through similar with my mother. Her care has been totally mismanaged, too many people involved and no follow through and it is soo infuriating.
GadgetRN71, ASN, RN
1,841 Posts
:icon_hug:I am so sorry that you and your family are going through this. I think many times doctors(and nurses) can get so jaded by what they see that they fail to realize that they are treating a person, not a diagnosis. I have had to advocate for a family member(the break room on that particular floor probably had my picture as a dart board) and it can be heartbreaking and draining..
You and your family are in my thoughts and prayers, please let us know how things go.