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.

[blinks14]

I don't know that it's legal but if the doctor thinks that it might affect the patient adversely or potentially cause more harm to the patient they may decide to withhold information at the family's request. I recently saw this done at the surgical hospital I work at. A woman had metastasized cancer and was very depressed and apathetic as it was, they discovered the cancer had metastasized after and exploratory lap and the family did not give her the full results of the procedure. I wasn't really happy with the family's decision because I personally would want to know. But this woman was barely willing to do anything as it was and she was capable of doing those things as she had been taking care of herself until admission. And I think though that she knew something was up though by the way she spoke. I think some people know they're dying.

[KyPinkRN]

i have never advocated keeping a patient in the dark about their diagnosis. on some unconscious level i think they know anyway. most patients can sense if you are not being completely truthful with them. this creates mistrust at a time when they need to trust us the most. that being said, i always respect the families' decision to tell or not tell. they know their family member better than you, however i always tell them about the trust vs mistrust part. keeping a patient in the dark about the diagnosis makes them isolated from those "in the know".

[loriangel14, RN]

We have a pts bill of rights posted where I work. One of the rights listed is the right to the truth about their condition. We tell them the truth if they ask.

[missjennmb]

i have never advocated keeping a patient in the dark about their diagnosis. on some unconscious level i think they know anyway. most patients can sense if you are not being completely truthful with them. this creates mistrust at a time when they need to trust us the most.

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.

that being said, i always respect the families' decision to tell or not tell. they know their family member better than you, however i always tell them about the trust vs mistrust part. keeping a patient in the dark about the diagnosis makes them isolated from those "in the know".

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.

[nessajune21]

I could only think that this would be allowed if the patient were a child. And even still, I don't think it would be ethical.

[Elvish, BSN, DNP, RN, NP]

People know when they are dying. It has been my experience that family members' reluctance to verbalize it to the patient has more to do with the family's discomfort than the patient's. Almost like if we verbalize it, that hastens the event. Illogical, but when it is your family member, logic seems to fly out the window.

When my grandmother (mom's mom) was dying, she kept seeing my grandfather (dad's dad, whom she hadn't seen in 25 years, also recently died). I told my mother and aunt to get ready, that Nana was going to die. They didn't want to face it at the time, but it wasn't long afterward that she did die. (By that point they had accepted it and it was a peaceful passing.) Anyway, that's JMO.

[chevyv, BSN, RN]

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'm a student and I'm wondering if we use our therapeutic skills we learned and answer by saying something like "You seem concerned about whether or not your condition is terminal. Would you like to talk about this?". It just seems a bit awkard....

[Elvish, BSN, DNP, RN, NP]

As a nurse, my responsibility is to that patient, not to the doc or his family.

[lpnstudentin2010, LPN]

Someone I know, on another board, just found out their son (13 years old) has 6 months to live and is not telling him. I do not agree with that, I feel like he is at an age where he can handle it, and has a right to know that he is dieing.

He has the same disorder I do, and he is dieing because one of the tumors has turned into a malignant nerve sheeth tumor, which they can do. I may not agree with her decision, but it is hers to make, not mine.

[DaMale Nurse]

During my last bit at school I took care of a 16 yr old diagnosed w/ ALL. We were giving her chemo and radiation treatments at the time. She had only been diagnosed about a month but the family still had not told her she had cancer. I spent allot of time looking up the law and talking to a faculty member(an associate dean) who was also a lawyer to make sure but because she was not 18 and not an emancipated minor she had no right to know or to say no to treatment. It was a very sticky situation at times, for example staff walking in w/ dano (a bright red chemo) in a blue gown w/ blue chemo gloves (not the normal) and we couldn't say anything about cancer or chemo to her. On the last day she asked me directly after she had gotten me alone. All I said was you are very sick.

[missjennmb]

Thats heart breaking. I guess I can understand, to a point, with children, only because every other aspect of their lives is not their own to control, so this would be no different. (although I still think honesty is the best policy) Its just hard to wrap my mind around the idea that an adult, particularly an adult who has managed their own affairs and has atleast partially cut ties with family (in the way that any adult does...by moving out, making their own choices, etc), would suddenly have that independence taken away from them in a time of crisis.

I don't know how I could lie to them. I don't know how I could lie to an adolescent or someone my son's age (he's 13) if they asked me either. I find it so unbelievably difficult to be dishonest with someone and I think that my feelings and emotions would most definitely betray me, regardless of what the doctor and family insisted on.