Family Doesn't Want Patient To Know?

[missjennmb]

I am just a nursing student, but on reading another thread here, I read that a patient's family requested that they (the patient) not be told of their status (that they were dying of, if I understand correctly). Is that normal/legal? Has anyone had an experience where this was justified? Would a living will or other document be able to keep this from happening?

I'm just trying to understand. Its hard for me to think of being in a situation, regardless of my competency level, where my "family" would be justified in keeping me in the dark about what is wrong with me. Its one thing to be unable to understand it due to lack of consciousness or complete lack of comprehension from mental illness, but I would stll want to know, regardless.

Just looking for stories and thoughts of those of you out in the field.

[Dalzac, LPN, LVN, RN]

I totally agree with this, and I guess this is really what my thoughts are. I have trouble trusting when I am vulnerable (like as a patient/client in a setting where my hands are tied) and can definitely see myself being unable to accept logical treatment reccomendations or care due to mistrust issues.

I can't help but think of my family, and I know that certain of my loved ones would answer this entirely different than others, just based on their own beliefs/attitudes towards life. I would hate, for instance, to have my mother making this sort of decision for me, because as much as I love her, she always feels that its more important to give the impression of normalacy and minimize drama/pain than to deal with issues head on.

I'm 100% certain that she would feel that she was doing me a service by keeping information from me, based on her past attempts to "protect us" (myself, my sister and my father). She always means well and I love her more than life, but her belief in making everything "seem" perfect regardless of the reality has been problematic throughout my life.

My husband on the other hand, would know and agree with my wishes to never be lied to, as that has been the very foundation of our marriage. I would never worry about him not doing right by me in that regard. No matter how bad the news, he would want to be there to help me through it and help me deal with it, which is what I would want.

I can't help but wonder for myself...what would happen if my husband was not around and my mother was responsible for that kind of care decision...and also I wonder how many other people have families similar to mine.

my 2nd husband had brain CA and his mother was adamant about not telling him. and would get so verbally abusive if I said anything about it. She actually thought I caused it and when the Doctor told us his pronosis she reached over and knocked me down. He was aphasic and could barely talk but one day he looked at me and as clear as a bell asked me" Am I going to die?' and I said yes and then asked "When" and I told him. She never forgave me and to be truthful I never forgave her for keeping it from him. He was a smart man and deserved to know the truth.

[pagandeva2000, LPN]

I think that certain cultures do not let their elders know when they are dying. I am not sure if this is a fact, however, I saw an episode of ER a few years ago, where an Asian elderly woman was diagnosed with cancer that had spread and there was no hope for her. The family told the physician that this is not their culture to tell, and, while the doctors were clearly uncomfortable with this, one of them almost slipped and mentioned the word "cancer" and the woman almost lost it. Immediately, they changed their plan and saw that it would not have been in the best interest of the patient to do this. While I don't know if this is an actual fact in Asian culture, it did make me think that maybe some people practice this.

I am not sure how to feel about this, either.

[Vito Andolini]

It used to be the norm to not tell patients they were terminal. All of that has greatly changed in the last 25 or 30 years.

However, the decision is individual. The OP's question is valid. What is she supposed to tell the patient if the patient asks her? We were taught to be rather stone-faced and distant and to tell the patient to talk to the doctor. The doctor was always masterful at avoiding the patient with such questions. It was really something how no one was direct or open about terminal cases. Patients with pain were kept "snowed" on morphine. It was all both good and bad.

I guess I would want to know so I could try to get my affairs finalized, speak with each of my loved ones, etc. Then again, ignorance is bliss.

[TiredMD]

So, if the family or doc tells the staff to keep mum and the pt asks the direct question, what does the nurse reply?

I think everyone in health care comes to a point someday where they have to decide (1) what's the right thing to do, and (2) whether or not to do it.

I would tell the patient, and consequences be damned, no matter their age, culture, whatever.

But you better be right . . . because if they're not actually dying, or the diagnosis is in doubt, you're going to have a lot of explaining to do.

[annmariern]

I will have to deal with this myself personally; my step mother is one of those people who really doesn't want to know, we have talked about it at length. I have encountered several pts over the years with the same feeling, even if you do tell them its in one ear and out the other. I myself would want to know the truth but I can't and won't force my feelings on someone else.

[leslie :-D]

I will have to deal with this myself personally; my step mother is one of those people who really doesn't want to know, we have talked about it at length. I have encountered several pts over the years with the same feeling, even if you do tell them its in one ear and out the other. I myself would want to know the truth but I can't and won't force my feelings on someone else.

there are many pts who don't want to know the truth.

and that s/b respected as well.

denial works well for some, while knowledge is power to others.

if the pt wants to know, dang it, i'll tell them...even against family/md wishes.

leslie

[rph3664]

my 2nd husband had brain CA and his mother was adamant about not telling him. and would get so verbally abusive if I said anything about it. She actually thought I caused it and when the Doctor told us his pronosis she reached over and knocked me down. He was aphasic and could barely talk but one day he looked at me and as clear as a bell asked me" Am I going to die?' and I said yes and then asked "When" and I told him. She never forgave me and to be truthful I never forgave her for keeping it from him. He was a smart man and deserved to know the truth.

Maybe she was in denial? Nobody wants to lose a child at any age, especially not this way.

That brought back memories of a girl I knew (albeit only slightly) in elementary school who I learned had brain cancer when I saw her obituary. We were in an activity together but attended different schools. A mutual friend later told me that her parents never told her what was wrong with her, but she figured it out anyway. I think she was about 12 or 13 when she died. This would have been in the mid-1970s.

[becembrie]

I think a patient should always know what is going on, especially if they ask point blank. There are patients that don't want to hear what is really going on and they don't ask. I think if they ask, they should be told the truth.

I agree with some previous posters that the family is trying to protect themselves from the emotional pain, but I have found that once families start communicating with the patient, things go much better and there are usually fewer regrets when the patient does die.

My mom has a progressive neurological disorder that will eventually cause dementia and death. When we first found out I didn't know how to talk to her about it. You'd think as a nurse I would be good at this, but she's my best friend and it was just too emotional for me. When we finally sat down and laid everything out on the table, a weight was lifted from all of us. We are still very sad on some days, but most days we use humor and take comfort in the time that we have right now. I can't imagine pretending nothing is wrong. I don't want any regrets.

[nerdtonurse?, BSN, RN]

I've also had patients tell me not to tell their familes they are terminal. At least it's the patient's decision to make but I also tell them they are robbing their families of a precious gift -- the chance to say goodbye. It's hard when the patient's familes have figured it out, but all you can tell them is, "the patient has requested we do not discuss his condition with anyone but his doctor."

I know it would be the hardest thing I ever did to tell my family if I was terminally ill, but I wouldn't want the last months I had with them to be based on lies, either.

[Kylea]

Hi :) New here, and what better place to introduce myself than here!! I advocate for patient's choice. Most patients want to know what is going on with them. I have however been through just the opposite. I had a family member diagnosed with a terminal illness. For as long as I can remember, this person told everyone who would listen that she never wanted to know if she was dying. She was afraid that she would stress herself out about it so much that she would be unable to enjoy what time she had left. After we were notified of her diagnosis, we made sure that none of us mentioned it to her. Up until the day she passed, she was talking about going home and getting stronger. I really feel that this made her last days easier.

[GOMER42]

I think that keeping a patient in the dark about their condition is unprofessional an unethical.

How can a patient consent (or not consent) to treatment without having all the facts?

[missjennmb]

I've also had patients tell me not to tell their familes they are terminal. At least it's the patient's decision to make but I also tell them they are robbing their families of a precious gift -- the chance to say goodbye. It's hard when the patient's familes have figured it out, but all you can tell them is, "the patient has requested we do not discuss his condition with anyone but his doctor."

I know it would be the hardest thing I ever did to tell my family if I was terminally ill, but I wouldn't want the last months I had with them to be based on lies, either.

I see this so differently. When its you thats the patient, its YOU who is being worked on/dying/suffering/whatnot. You have every right in the world to know. But the families... what do they gain from knowing? I would support a patient fully who wanted to tell their families or not tell them.

I watched a movie recently, where the guy that was dying said... every time I look in their eyes, all I can see is my death looking back at me, because they have stopped seeing ME and are only seeing my condition.

I can really see that, because the whole "elephant in the room" thing where everyone sees it, nobody wants to talk about it, but nobody can think about anything else. I think that I would tell my family, but I would do it in my own time, and in my own way, and when I was ready.