Why can't doctors just "TELL" their patients the TRUTH!?!

Specialties Oncology

Published

Hello. I just started to work on an Oncology floor/BMT floor. I work at a VERY large teaching university/medical center. We take everything when no one else will. Anyhows, my mother died last year of IBC at the age of 52 so that is why I want to work in Oncology.

I have had this patient for 2 days now, 36 y/o female with lung ca and mets to the liver and bone and she has ascities so bad she looks 12 months pregnant! She has a PCA pump and Methadone for pain and it is so sad to know that she has gone through all of these tx's and they have not doen any good. The doc's are going with her wishes to do more, but have the docs really told her the TRUTH about what happens once you mets to the LIVER!?! The doctors and residents and interns and sub-i's sit in the lounge and talk in front of the nurses about how so and so is NOT going to make it and their chances are grim and WE as the nurse know that once you mets to the liver it is NO good, but why can't the docs just tell them so they can get their affairs in order and be comfortable? I know once my mother mets to the liver it was very fast after that.

The nurses tell me that at this med. center they take what every other place won't because it is the patients LAST resort cuz they have tried everything else and because we are a teaching hospital they experiment. But the nurses tell me who have been there for 15 years that they RARELY see anyone do "GOOD". They usually watch these patients deteriorate over a few months, if that then say good bye.

Anyhows sorry for the rant but I have one more thing to say. A patient died tonight at the age of 52 and the family started to cry and I had to excuse myself and go cry my eyes out cuz all I could think about was last year losing my mother. How long will that go on for? I KNOW I am not the oncology nurse to have lost a loved one to cancer.

How do you cope?

Carlissa RN

Hi, I just wanted to say that I kind of know how you feel. I lost my mother in law who I loved very much two days before Christmas. She had been diagnosed for 4 months when she passed and she was only 68 years old. When they finally got her diagnosis (after a whole month of tests) the doctor wouldn't tell her that she had no real chance of recovery. They kept telling her "well, we will get you some radiation and then try to start a more aggressive approach". She had lung cancer with mets to the adrenal glands and liver. The doctor told us and then said if we/she wanted her to know then we could wait until the right time to tell her. What?!!! I was appalled. This is a wonderful woman who deserved that information from the doctor. Not her children. I will say this, if I or my family ever get cancer we will not stay here for treatment. My FIL died after a month and a half of being diagnosed and he had been going for tests for 3 YEARS to find out what was wrong with him and then my MIL after 4 months. The oncology doctors here are horrible with in my opinion with no real respect for the people they are treating. Guess I can't help you much as I tend to really agree with you.

Sunny

Specializes in OB, M/S, HH, Medical Imaging RN.

Patients deserve the truth no matter what it is.

I had one particular patient who the doctor told the daughter that the mother had 6-12 wks to live. Stage V endometrial CA with mets to the brain, liver and pancreas. The woman was already mottling! I told the daughter I felt like she should call her family and have them come right away since they were located out of town. She said "but the doctor said", I said "I know but I don't think we're talking weeks or even days, I think we're talking hours here". She did call the family. They did come. She did die 6 hours later. The daughter thanked me endlessly for being honest with her. I don't understand how the doctor could be such a jerk, I guess just chicken s***!

I had other nurses tell me I shouldn't have said anything but I feel it's my job as a patient advocate to be honest. If I hadn't of been honest the woman's children would not have been at her bedside when she passed and I would have felt guilty for not saying anything even though it was the doctors responsibility to do so.

Princess74

817 Posts

Patients deserve the truth no matter what it is.

I had one particular patient who the doctor told the daughter that the mother had 6-12 wks to live. Stage V endometrial CA with mets to the brain, liver and pancreas. The woman was already mottling! I told the daughter I felt like she should call her family and have them come right away since they were located out of town. She said "but the doctor said", I said "I know but I don't think we're talking weeks or even days, I think we're talking hours here". She did call the family. They did come. She did die 6 hours later. The daughter thanked me endlessly for being honest with her. I don't understand how the doctor could be such a jerk, I guess just chicken s***!

I had other nurses tell me I shouldn't have said anything but I feel it's my job as a patient advocate to be honest. If I hadn't of been honest the woman's children would not have been at her bedside when she passed and I would have felt guilty for not saying anything even though it was the doctors responsibility to do so.

Good for you! What a great nurse you are. I wish everyone were as honest as you. I know that what you did made a HUGE difference in the way that family delt with their loved one passing.

leslie :-D

11,191 Posts

i had a gentleman that was admitted to my hospice unit. he had lung ca w/mets to liver, bones, brain. also arrived with a tube fdg w/orders to run at 60 cc/hr. accompanied by his family, they reported to me that the onc said he had 4-6 mos to live. according to my assessment, he had 4-6 hours. he arrived vomiting and w/absent bowel sounds. i aspirated a couple thousand cc's of bile, tf and whatnot.

i called the onc and reported my findings. i was furious. i wanted an aggressive plan of care for pain, which the pt received. i had to tell the family that it was only a matter of hours. they were furious at me, in denial and kept reiterating what the onc had told them. i encouraged them to make the most of their time with their dad/husband. after a few hours, my pt started becoming highly anxious....so i shooed the family off stating dad needed his rest. after they finally left, i could see him trying to relax but was still restless. i turned down the lights, put on some german music (family had brought it in) and gave him more ms04. he thanked me as i lay my hand on his chest; he closed his eyes, couple of gasps and he passed.

that poor family who had been grossly deceived by this onc.:angryfire

this is not the first time something like this has happened.

when i called to inform the family, you could hear the outpouring of utter shock and grief. had the oncologist been honest, they would have been able to prepare but they were not afforded this. my patient, i think, was ready to go. the family, on the other hand, really needed alot more counselling than they actually got. without a doubt, the truth is ALWAY the route to take.

leslie

Specializes in Oncology/Haemetology/HIV.

Unfortunately, in many cases the MD has told them the truth.....often the family/patient denies what they have heard or does not accept it.

I have personally sat there, when the MD discusses the poor prognosis with the patient - in very plain language, just to have the pt tell their loved ones something totally different.

And then I have had some MDs that refuse to stop treating, because it goes against their nature. However, the "denial" cases out weigh those, generally.

I was recently working at one of the "top" of hospitals in the country. I have worked at several of the "top" hospitals. The patient had a disease that was essentially incurable. Even so the SOs were quoting a cure percentage of greater than 90% if they got "X" treatment and were awaiting approval. How that impression was made, I have no clue because NO ONE would give this patient that sort of odds, because there was no way that it was remotely possible.

When the MDs sat there with witnesses and the family and made it clear that the patient could not be cured, an SO went on profane tirade, complaining loudly about how the SO hated this place, and how they just kill people, how they don't care, etc. And about flying the relative to get a second opinion at a "better" hospital. I had to run for cover as my mouth dropped open so, it could have caught flies.

There is no better place....I've been at some of those places, "quoted as being better", and this patient was in probably in the best place for the disease, compared to the others.

Do you think that the patient got further treatment, though pretty futile???? And when/if the patient got worse, who do you think got blamed?

Like every onco nurse, I hate "flogging" the patient with futile/useless treatment. But many times, my patient has requested that, for the outside chance that it will be successful. And while MDs can frame the options in such a way to direct what s/he prefers the patient to do, ultimately the patient has to make the decision. And many of them HAVE been clearly told what the prognosis is. Sometimes they choose the treatment themselves, or by pressure from family/SOs/religion/culture.

And it is difficult to predict death. I really wish that no one would even try to do so. If I had a nickel for every time an MD said that a patient wouldn't survive the night and they did, I could retire. As well as theones that say they "may" have 3-6 monthes, and they go "too soon", because the MD said that they "definitely" had 6 monthes. "Could" and "may" become "will" and "definitely" as people hear what they want to hear.

leslie :-D

11,191 Posts

for the most part, i agree that it is difficult to predict death.....unless it is imminent. then there are definitive signs. so when i have a pt who is presenting with those signs, i am comfortable in saying so when it's a matter of hours.

i also agree about patients and their families hearing what they want to, and all the other dynamics. when i had spoken to my pt's oncologist, he did report that this particular pt had 4-6 months. the family was accurate in their reporting. i would like to think this is the exception rather than the rule. but after having one too many conversations with various oncologists, sometimes i wonder.

Specializes in OB, M/S, HH, Medical Imaging RN.
for the most part, i agree that it is difficult to predict death.....unless it is imminent. then there are definitive signs. so when i have a pt who is presenting with those signs, i am comfortable in saying so when it's a matter of hours.

:yeahthat:

Leslie, You are 100% correct!

MrsStraty

65 Posts

Well thank you all for the replies.

I have heard some nurses say that the docs DO tell some patients the truth but the pts are in denial and so is the family.

Also in my original post I was talking about my 36 y/o patient, who is on the brink of death, well the nurse who is precepting me to the floor is soooooo damned mean. She is like 60 y/o and is ready to retire, trust me. She(my pt.) gets a world of visitors and she has young kids,......"Oh the young kids should not be here, we have pts. who have no immunity", my preceptor says. It gets my pt really upset for one, and for 2, for God's sake she IS dying! She should be able to have as much time with those precious kids and her family as they all need. And when I stand there to talk to the patients.....she hits my arm and pulls me out of the room.....you don't have time for this little chit chat. Oh she is so controlling. Yes I DID have time if I did not I would not have stayed for a few minutes. I am very good with time mgt. I was working at a sub-acute rehab wgere I was responsible for 43 residents PLUS supervising the whole house of 119. I can't wait to do my own thing. I am so tired of hearing the patients say how mean she is and she is. Thank God I am going to nights and I won't have to work with her. Also if I lay in my bed dying NO ONE ever better tell me who can come see me and when they can come see me. That is just plain heartless, if it were them, thats all I think.

Anyhows, anyone out there ever lose a family memer to cancer and work on an oncology floor now? How do you cope? Does it get easier cuz I find myself CONSTANTLY thinking about my mother! All the bald ladies LOOK like my mother.....well make me think of my mother and when someone dies I lose it.

Carlissa

JeanettePNP, MSN, RN, NP

1 Article; 1,863 Posts

Specializes in Pediatric Pulmonology and Allergy.

What is SO?

These stories are making me cry.... My dh lost 2 close relatives to ALS, one in the last year. ALS is nothing like cancer but in the sense of being an incurable disease. I know well the denial, the desperate grasping at straws, the willingness to accept any quackery that offers a shred of hope for a cure. My BIL who died in August was on all sorts of weird diet regimens, vitamins, etc none of which did a whit of good.

happynurse1

20 Posts

hi there..i am new to this website and i am also a bone marrow transplant nurse who has worked with transplant patients for 4 years. it is hard but so rewarding. i am also a traveler and i have a mom with cancer. i have also worked in hospice. i think that has helped with seeing how the docs live in denial and are not always as honest as they should be. i am sure there are alot of reasons for it but who knows. i can tell you that any big teaching facility you go to .. they will say..these patients come here as a last resort..we are their last hope. i have worked in 3 places that believe they are the only hope..haha!!! but really, i hope you can hang in there. we need caring transplant nurses. and you know..it is ok to cry in front of a patient's family! i have been there when many patients have died. i remember them all but one touched me in a special way. she was 21 and had had 2 transplants...her dad would sit at her bedside and take such wonderful care of her. they were such a special family and we all got close to her and the family. when she died, the sun came out and her dad said..look she is smiling..we all cried including the doctor! while that is sad, i was so honored to be part of that experience. i am still in touch with that family today. and there are successes..we don't always see them because they go to the clinic and then home. i am still in touch with some of my transplant patients. they send me pics and email me! of course, i will not lie, more die than live but i would never trade my experiences for any other type of nursing! i hope that helped!

Specializes in Oncology/Haemetology/HIV.

Anyhows, anyone out there ever lose a family memer to cancer and work on an oncology floor now? How do you cope? Does it get easier cuz I find myself CONSTANTLY thinking about my mother! All the bald ladies LOOK like my mother.....well make me think of my mother and when someone dies I lose it.

Some of us have had cancer and/or chemo and still work the Onco/Hemo floors. Plus numerous family members that have/had the disease.

I consider that death is as much a part of life as birth. My job is optimize my patients' time, health and choices, the same as any other nurse. Even though that patient's time is limited and coming to an end, unlike birth, where that time is less limited.

As far as children and visitors, there are interventions to reduce the risk of disease, unless the patient is extremely immunocompromised (very neutropenic), and as long as the visitors follow the rules. But you also have to recognize the risks to other patients on the floor (if they are immunocompromised) as well as some overstay their welcome and tire the patient. Also, many children endanger themselves and others by behaving like children.

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I agree that when there are signs that death is imminent, it is okay to indicate that to the the SOs. But too many MDs say 4-6 weeks, then when the patient dies in three days or 6 monthes, the family is distressed. They either blame (s/he would have lived if you did your job) or it becomes another form of denial.

For question of what is SO, it stands for significant others.

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