Knowing the worst and not saying a word.

[Tait]

The other thread about what to tell patients about diagnostic tests got me thinking.

I remember when a patient of mine had a biopsy done on some masses in the abdomen. For two days I watched for pathology to come back so we could get the MD in to talk to them about the diagnosis. On the second day they decided to discharge the patient to follow up with an oncologist for results. A few hours before the patient left I found the results and it was non-Hodgkin's Lymphoma. (They knew there was something but were hoping it wasn't this.) My heart was so heavy but I knew it wasn't my place to say anything. The patient was very stressed before they left and all I could do was simply hug them and tell them "one day at a time".

Do you have any experiences where you knew something about a patient but could not tell them?

Tait

[Biffbradford]

Yes. I don't want to get into specifics and so this is going to sound weird, but the patient knew fully what the problem was, but none of the patient's doctors could bring themselves to say what the long term prognosis was, even over a period of a year, and all the nurses knew it as well. The best case scenario was assumed, but in reality not at all possible. To know this would have been devastating. The patient faced the unknown bravely and with conviction hoping to beat it, but in the end, died from something else. That was probably best, and probably what the MDs were hoping for. It was a very sad story but inspirational as well. Taking life one day at a time and enjoying every moment possible despite the rotten cards dealt.

[Munch]

I had a patient that was just wonderful. He was a Montagnard, and was a true hero to a lot of our GIs during the war in Vietnam -- the doc told me he'd known the guy for years socially, and if he ever went back to Vietnam there was a price on his head, and that in a righteous world, he'd have gotten a Presidential Medal of Freedom. FYI, 50% of the Montagnards, or Vietnamese mountain people, were executed by the Viet Cong; they paid a horrible price for helping GIs and rescuing downed airmen. My patient was very body shy, but I was able to see he had scars consistent with being shot and what looked like beat with a piece of barbed wire. The scars on his back took my breath away.

Being an Army Brat, this made him royalty to me -- if that man had wanted anything in the hospital, I'd have gotten it for him. I'd grown up hearing stories of how wonderful these people were, how many people they'd saved. But he was "yes, ma'am" and "no, ma'am" and "thank you, ma'am."

He'd come in for something relatively simple -- gallbladder or kidney stones. Had done well and was going home the next morning, and they did a x-ray to make sure that what they'd done had worked. Except this particular x-ray went just a little higher in the chest than the prior films, and he had a 6cm nodule in the middle lobe of his lung. The report spit off the printer, I looked at it (anticipating nothing wrong) and was floored. He had lung CA. And I couldn't tell him. He talked all night about what he was going to do do with his grandchildren that summer, how he and his wife were going to NY because he'd always wanted to see Lady Liberty, etc.

And I'd been on the phone to the big teaching hospital in the state capital, getting him an appointment for a bronch with biopsy.

When I went in the next morning, he'd made his bed neatly, and was sitting at the foot, dressed and putting his shoes on to go home. I told him he didn't get to do that until the doc came by and wrote discharge orders, and that he had to have one more of our wonderful breakfasts before he left. And I started home, pulled over in the McDonald's parking lot, and cried.

When I went back to work that night, he'd been transferred. I never saw him again. But I know that at least for one night in my career, I looked after a true hero.

This story is very similar to what happened to my father. Marine in the Vietnam war. He worked for Bristol Myers Squibb pharmaceuticals-aviation mechanic...he fixed their airplanes and helicopters(copters were his specialty). They required all their employees undergo physical exams once a year around the same time. Everyone was talking about their doctors reports..saying how one just needed to lose a few pounds, one needed to give up sugar etc. Only my dad didn't get his report. He was puzzled by this but didn't think anything of it("I NEVER GET SICK"..was my dads mantra). My dad is sitting in his office(tears are falling just sharing this story) and his boss tells him he has a phone call..it was a nurse from where he got his physical saying that he needed to get a CT scan..he could get it done at home(my dad worked a bit upstate outside of the city about an hour and a half where we live). He decided to get the scan at home.

Long story short the ct scan revealed some nodules in his lungs. He then had an MRI revealing his liver, lungs and pancreas was COVERED with tumors...diagnosis pancreatic cancer...prognosis..6 months if he was lucky...My mom and dad knew about his diagnosis weeks before they told us because my cousin was having a big wedding and we all wanted to go have a good time as a family. I can't imagine how hard it was keeping this a secret from their 14, 16(me) and 20 year old kids. We also had Disney World trip coming up after which we would go on the Disney cruise. My dad died 2 weeks before we went on that cruise and about 11 weeks after his diagnosis. Uncle Sam paid for my college...they believe the exposure to Agent Orange when he was in the war decades before caused the cancer...hence the reason all of his dependents were eligible for Uncle Sam benefits for college and other things. I guess I am a product of my pass..oncology nursing.

[emmanewgrad]

I was a juvenile counselor looking for a new career, came across a cna position. Not knowing what it entailed , though eager for a new professional adventure, I accepted the position. Tested out for certification and started work a week later .my first patient to help take care of was Mrs Emma, the last member in her family, no kids, no one left by her side. I started my shift and saw her in a fetal position, I covered her with a warm blanket and massaged her hands with lotion while wetting her lips with water. She was passing away. I asked the nurse in charge if I could stay by her side, she let me. I stayed with her , she passed away during my shift...warm, while I held her hands. She was the reason I decided to earn an RN degree .

[Anna Flaxis, BSN, RN]

Do you have any experiences where you knew something about a patient but could not tell them?

Tait

Yes.

[emmanewgrad]

I had a patient that was just wonderful. He was a Montagnard, and was a true hero to a lot of our GIs during the war in Vietnam -- the doc told me he'd known the guy for years socially, and if he ever went back to Vietnam there was a price on his head, and that in a righteous world, he'd have gotten a Presidential Medal of Freedom. FYI, 50% of the Montagnards, or Vietnamese mountain people, were executed by the Viet Cong; they paid a horrible price for helping GIs and rescuing downed airmen. My patient was very body shy, but I was able to see he had scars consistent with being shot and what looked like beat with a piece of barbed wire. The scars on his back took my breath away.

Being an Army Brat, this made him royalty to me -- if that man had wanted anything in the hospital, I'd have gotten it for him. I'd grown up hearing stories of how wonderful these people were, how many people they'd saved. But he was "yes, ma'am" and "no, ma'am" and "thank you, ma'am."

He'd come in for something relatively simple -- gallbladder or kidney stones. Had done well and was going home the next morning, and they did a x-ray to make sure that what they'd done had worked. Except this particular x-ray went just a little higher in the chest than the prior films, and he had a 6cm nodule in the middle lobe of his lung. The report spit off the printer, I looked at it (anticipating nothing wrong) and was floored. He had lung CA. And I couldn't tell him. He talked all night about what he was going to do do with his grandchildren that summer, how he and his wife were going to NY because he'd always wanted to see Lady Liberty, etc.

And I'd been on the phone to the big teaching hospital in the state capital, getting him an appointment for a bronch with biopsy.

When I went in the next morning, he'd made his bed neatly, and was sitting at the foot, dressed and putting his shoes on to go home. I told him he didn't get to do that until the doc came by and wrote discharge orders, and that he had to have one more of our wonderful breakfasts before he left. And I started home, pulled over in the McDonald's parking lot, and cried.

When I went back to work that night, he'd been transferred. I never saw him again. But I know that at least for one night in my career, I looked after a true hero.

Amazing!!! Your life experience made me cry :*)

[QuenymamiRN]

My mother had a suspicious nodule on her lung. Me and the dr knew it was cancer, but the dr refused to tell her that it was suspicious until she had surgery and it was confirmed. She was angry that no one told her it was "suspicious" and she felt that they had given her false hope. I think it is terrible to not tell people, but on the other hand I understand.

I have a lump, hard to tell if it is the ribs or the breast, and the same dr tell's me "its probably benign, don't worry." Needless, to say I will worry.

[Biffbradford]

How about just knowing the worst and dealing with the consequences?

(Trying to keep the details to a minimum and still get the point across)

We had a long term ICU patient that was very high acuity but could have transferred to the floor if it weren't for being highly infected with drug resistant germs. I don't exactly recall, but prob. MRSA, VRE, and I think others as well. The infectious disease team stated that leaving the isolation room would be impossible. Ever. It took some time to come to an agreement, but the patient (fully oriented) decided that further treatment should be held and let nature take it's course. Although, NPO, the patient had the entire family in the room for a hearty meal of favorites and they all enjoyed a final meal together. Although the patient probably aspirated half the meal eaten, it was enjoyed as a great party and they all had fun that evening. The removal of the life support that was the key factor and the patient died very quickly after that. It was a tough situation for everybody. The nurse on that assignment that day had a similar case not too long before with a similar ending where life support on a fully oriented patient had to be withdrawn because nothing further could be done. That was straw that broke the camel's back and that nurse quit shortly after.

It can be a tough job.

[bagladyrn, RN]

For me the toughest is when I have a patient come in to L&D and am unable to get a fetal heart tone. Of course the physician and ultrasound get called immediately but the wait for confirmation of what I already know is agonizing.

Some of these couples come in not even realizing there is a problem, simply because they are in labor.

Since this is one of the most devastating diagnoses for a young couple I am not going to tell them m conclusion until the doc and US are there to help with confirmation.