Family Doesn't Want Patient To Know?

Nurses General Nursing

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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.

you see i feel like i can put myself kind of in the situation (I have the same disorder) I have always known that it was a possibilty that they could turn cancerous (since 7th grade when I did a project about my disorder) and I would want to know if they did. Not to make decisions about my care but just to know.

By the way this family decided against treatment, docs think it would only add 2 or 3 months he has too many other tumors on top of this one so they decided to let him be mildly healthy in the end of his life rather then puking and feeling miserable.

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Specializes in critical care; community health; psych.

When they ask the direct question, I do not lie. That the patient is asking this shows that they already suspect the truth. I'm talking about an awake, alert and aware patient.

This usually has to do more with the family's inability to accept the truth than the patient. The family is not yet ready. I gently let the family know that I intend to respect their wishes to a point. I also consult other members of the team so we're all on the same page.

We take care of families too.

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Specializes in Critical Care.

My father had been a very healthy person. He developed some lower GI issues and was diagnosed with Crohn's late in life. Got worked up for surgical intervention and discovered he needed CABG. When they opened his mediastinum to do the CABG, his lymph nodes were full of cancer, previously undetected. They stopped, conferenced with my step mother, and all decided to proceed with CABG until further tests could be done to find the source of the Cancer, determine if it was treatable, etc.

His postop course was a bit dicey postop, and he was on the vent much longer than anticipated. We (the family and MD's) decided to not tell him right away re: the cancer, since he was fogged out from the pain meds/pressors, uncomfortable from a chest tube (developed a pleural effusion that needed draining, etc. etc. etc.). After about a week, he was in a clearer mental state, and that's when we broke the news to him. AFTER we had more of an idea of what he was dealing with. (It was mets from a previously treated bladder cancer that he was supposedly clear of for 2+ years - negative cystoscopies, etc.).

I don't regret for one minute not telling him sooner. He had enough on his plate, trying to cope with being so sick postop, and not in a mental state to be able to deal effectivley with his new diagnosis. He died several weeks later (still on vent/trached, etc.). He had time to prepare himself mentally/spritually/emotionally, wrote my step mother the most tear jerking love letter saying good bye.

So - bottom line - families know their loved ones better than we do, and perhaps there are reasons we aren't privvy to as to why they might delay telling the patient bad news. I don't think someone should go their grave not knowing, personally. But there is often more than meets the eye, and in some instances the family might be right in holding off for a little while.

Just a different view point, not applicable to every situation to say the least!!!

1 Votes

Pt. has the right to know their health status. If they choose not to know, then that's also their right; however, it sounds like in this situation, the pt. should have been told.

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Specializes in Maternal - Child Health.

Generally speaking, I think the idea of not telling a patient "bad news" is a throwback to an earlier time when it was believed that sharing negative information could precipitate depression, interfere with recovery and/or that failing to tell them was "protecting" them somehow. Those were the same days when we didn't allow mothers to see or hold their stillborn infants, based on the same misguided notion of "protecting" them. We now know that we were interfering with their normal grieving process and doing them no favors.

I don't think this comes up these days nearly as much as it once did, given changes in medical ethics that call for an honest relationship between the healthcare provider and patient (not family).

I understand that there are circumstances such as bluehair described above, or situations involving patients who are incapable of comprehending their diagnosis (such as young children, intellectually disabled persons or those temporarily incapacitated by treatment) which may justify delaying the sharing of such information.

But if any patient asks for his/her diagnosis and prognosis, I believe we must be honest. That may involve scheduling a family meeting and arranging for support services such as social work, but the patient deserves an honest answer.

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Specializes in CVICU, Burns, Trauma, BMT, Infection control.

As a nurse I know that if someone ask's me point blank if they're dying I will talk to them about it and answer their questions.

On the other hand,my brother died before I was born of ALL(in the 50's) and one of the things my Mom was most angry about years later was "One of those nurses told Bill he was dying!" Of course this was quite a long time ago and things were different back then but it does go to show that when you're dealing with a sick child you are also caring for the family. And if the communication is not done with care it may impact the remaining family for a really long time.

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Specializes in Community, OB, Nursery.

Of course, it is indeed key to say anything with care and compassion. You can do that without denying reality.

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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.

I just can't believe this. I get personally upset about this because it happened with me when I was diagnosed with ALL when I was 18. My immediate AND extended family all agreed not to tell me my diagnosis becuase they felt that I wouldn't be able to handle it. It was my sister who told me in private and the reason I was not told. I was so angry. I would have felt more out of control and scared by not knowing what was going on with me and why I was in the hospital than if I was told so that I could get involved, educated, and mentally prepared for what was happening.

I supposed it may be better under some circumstances for a patient to not know. Even if the patient is a minor - if they have the sense to ask what is wrong with them, geez - shouldn't they be able to know. It's their body! I'm blown away by the thought of keeping that information a secret.

I guess this is a big red flag that says I shouldn't work with children so that I do not find myself in this situation. I wouldn't go against a parents wishes, but it would be very upsetting.

On the other hand, being a parent to a 3 year old, I can understand how it could hurt the parent more to know the child knew they were dying. We all want to protect our kids.

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Specializes in Hospital Education Coordinator.

this is why hospitals have ethic committees. The first responsibility is to the patient, but sometimes there are gray areas.

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Specializes in OB.
you see i feel like i can put myself kind of in the situation (I have the same disorder) I have always known that it was a possibilty that they could turn cancerous (since 7th grade when I did a project about my disorder) and I would want to know if they did. Not to make decisions about my care but just to know.

By the way this family decided against treatment, docs think it would only add 2 or 3 months he has too many other tumors on top of this one so they decided to let him be mildly healthy in the end of his life rather then puking and feeling miserable.

Just an aside here to tell you I find it really helpful on many of these topics to hear the perspective from someone "on the other side of the bed".

Thanks!

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Just an aside here to tell you I find it really helpful on many of these topics to hear the perspective from someone "on the other side of the bed".

Thanks!

I am glad. I like hearing from your guys side. It has helped me as a patient.

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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.

In 1948, when she was 15, my mom lost her best friend to cancer. She was told only that she had a growth on her kidney, as was standard practice then even with adults, but she knew.

This horrible disease possibly stole a great performer from the world's concert stages. She was a violin prodigy whose small-town Iowa parents were looking into sending her to train with one of the great masters (Haifetz? Menuhin? Another? Not sure) when she got sick.

:cry:

Unless this girl is mentally challenged, she knows exactly what's happening to her.

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