Patient doesn't know he's terminal

[AmericanChai]

In clinicals today there was a pt. who had been in hospital for about a week. He was not aware he was terminal with cancer, but the family was aware. They had not told him yet and didn't want the staff to tell him about his dx. The pt was cognitively/emotionally intact. How can a pt. not be informed of his serious health situation, and what right does the family have to withhold that from him?! As a nurse, how can you be asked to lie to a patient if they ask how they are doing, believing they just have a minor health problem that they will recover from when they are actually terminal?

[S.Gettes]

Moments like these can be hard especially on your emotions, mainly your empathy for the patient. It is hard to look at someone knowing full well that they are not going to survive their condition and knowing that they have no idea that they will be passing over soon due to their illness. It comes down to following the families wishes, if they request your confidentiality in the matter then it is the right thing to do in doing so. If the patient begins to ask questions to which you feel you are not able to lie or change the subject or avoid the truth of then it is best that you tell the patient that you will ask the doctor to speak with them as the doctor will be able to give more informative answer than you are able to due to you not being aware of the full information at that time (even if you do know everything) this way you don't have to lie to the patient and it will be up to the doctor whether or not the patient is informed. Many conditions that are terminal can be excelled by factors such as the patient being stressed, this is another reason that the family may wish for the patient to not know, they probably want him to go peacefully in his sleep rather than lying awake regretting things in his life that he didn't get to do knowing that he will be passing away soon.

[nursel56]

Perhaps it's a cultural norm. For example, in at least one Asian culture (can't remember which one), the family never tells the patient (especially male elder) of a grim prognosis. Culturally, it is considered impolite. And, certain cultures also consider it rude to ask an "authority person" (aka you, the nurse or the doctor) direct questions about their condition. In fact, it was a norm here in the US just a generation ago to just do as you were told regarding health care. Some of the "old timers" here remember this.

Yes. This is an extremely important thing to consider and should be handled within this context or at least considered in evaluating what to say to the patient. I've been told that in another culture, (not Asian, btw) it is the norm not to tell a dying patient what their prognosis is. I don't know why, exactly. I was very surprised to hear that. But she was quite adamant, as in "oh, no. . . we never tell them. ."

This may not be applicable at all to the OP s situation - but I mentioned it because of the conversation I had with this family member.

[tewdles, RN]

wow...and we wonder why we torture people in the hospital before they die...perhaps because of this type of health practice....

hhhmmm, is this how it works....lets not tell the person what their diagnosis is, not tell them of the terminal nature, and then lets pretend that we can cure them...until they die in ignorance and pain....

how's that working for us as a culture?

[DaddyO]

I subscribe to the logic that only HE knows when we will get our wings. Terminal or not, IMO the Pt is living with Cancer and not dying from.

They gave my cousin 6 months to live, Stage 4 Cancer.......3yrs later.....with the help of Sloan Kettering.....he's doing well.

I would follow the family's lead...but only after checking the HIPPA paperwork.

[tewdles, RN]

I will be a patient advocate...this generally does not include lying to a competent patient.

[Kylea]

I agree and disagree with the OP's situation. On the one hand, I would never outright lie to a patient. On the other, I have been in that situation. When a family member very close to me was diagnosed with ESLD and given a very poor prognosis, we did not discuss it with her. She had made it VERY clear through out the years that she never wanted to be told she was dying. She always said that if someone told her that info then she would spend the rest of whatever time she had obsessing about how much time she had. I do know that the MD's working with her did tell her that she wasn't going to get better; I wasn't in the room but I did speak with the MD afterwards. He said that she did agree to go into Hospice, but none of us were ever sure if she actually understood what Hospice was. She passed away a month later. And to this day I do not feel bad for not telling her. She was peaceful, and almost happy during that month.

It is a very tough situation to be put in. The family generally does know the patient better. Something you could do is ask the family why the patient hasn't been told. Perhaps they may say that the situation is similar to mine. Perhaps not. Either way, you can also talk to the MD, your supervisor, and/or the ethics committee if you are still concerned.

Bottom line, if the patient asks me, it is not my place to deliver a prognosis; that is why the MD get's paid so much more than me. But I will not lie to a patient. If he/she asks me if he/she is dying, I will ask him/her what they think. But I won't tell him/her NO if it isn't true.

[DaddyO]

I don't mean to be an A-hole....but we are all dying. right after we are born, we start to die.

So help me to understand here......if this Pt ask if he is dying....would you say yes ? Then if he ask how long does he have.....what do you say then ? Do you give a timeline ? At what point do you draw the line ?

[OldnurseRN]

If it were me I would hope my family never loves me that much that they would withhold my prognosis from me. Perhaps I will have things I want to clear up, finish, or "make right". Maybe I will have final wishes I have yet to be made known. Who knows? In my practice I can't fully advocate for nor holisitically treat my entire patient if I'm forced to withhold something that may or may not come up. A patient with their full faculties and in control of their own life has the right to know of a terminal diagnosis and poor prognosis. My POA for medical purposes knows my wishes, is not a family member, and most importantly WILL carry out what I've chosen, regardless of family pressure to do differently.

[tewdles, RN]

I appreciate Kylea's comments..and yes, this is certainly the circumstances sometimes. More often, however, the family is trying to protect their loved one and their decision to withhold the information has nothing (apparently) to do with the wishes of the patient. (in my experience in hospice encountering this scenario)

I completely agree with OldnurseRN who makes the point that there are, many times, things that a person may want to do or say in the time preceeding their death and a family's insistence upon "protecting" that person from the truth may deny them the closure that they need and deserve.

Yes, if someone asks me if they are going to die, I may simply say yes. If (when) they ask me how much longer I am honest with them...I do not know, but I could guess (which I am not inclined to do). I will often ask them how they feel. I will encourage them to "listen" to their own body and their own heart. I stress with patients and families that this process, like ALL of our lives, is individual and unique. I explain that there are signs and symptoms which will give us clues...but there are limits to our ability to KNOW a specific time frame.

The lines I "draw" are determined by the needs and goals of the patient, the family, and my professional credibility and responsibility. The anticipatory grief of a family can significantly affect the end of life care of their loved one...it is not uncommon for the bereavement team to begin their intervention in advance of the death when these sort of issues become apparent.

[aKyRN81]

. In fact, it was a norm here in the US just a generation ago to just do as you were told regarding health care. Some of the "old timers" here remember this.

I remember when it was also thought that the woman who had delivered a stillborn would ' do better' if she never saw or held the baby. That also was a 'norm' back then which was not beneficial to the patient.... Sometimes progress is a good thing and deception or avoidance are not......

[leslie :-D]

often, a pt will tell me they 'know' something is wrong but no one is telling him/her anything...

and then will ask me, am i dying?

regardless of family/poa wishes, i always tell pts the truth.

(only when pt has indicated they want to know.)

families try to protect their loved ones from any sort of physical, mental, emotional injury...

as well as often projecting their own fears of dying.

what most don't realize, is dying is a process, and there are 'tasks' to be done.

yes, many pts opt to bow out of this 'process' and choose to remain drugged.

but there are just as many who want/need to finalize their life, which necessitates whatever the pt deems important.

we owe it to our pts, to be sensitive and truthful.

and while we promised to "do no harm", that is ironically what we end up doing, when we take away a pt's RIGHT to manage their death.

leslie:twocents:

[tewdles, RN]

well said leslie