Pediatrics: Parents asking not to disclose diagnosis

[rant]

I've recently encountered a bit of an ethical dilemma at work. For the first time, I had to float on a pediatric oncology ward, and I read in the chart history of one of my patients that the nursing and medical staff had to deal with her parents asking them not to reveal the diagnosis of leukemia to their daughter.

How it was resolved was not clear in the notes, and I did not have time to read the entire history.

It occurred to me to come on the forum and ask: what would you have done? Here in Canada, the age of a child is until 16. This patient was 9. Putting the logistics of the daughter already being on a cancer ward and surrounded by other children with cancer aside, how would you deal with this request?

Obviously, we need to advocate for the daughter, and gently remind the parents that children are very perceptive and generally immediately know when there is something wrong. But if they were adamant?

Thank you in advance for any responses.:redbeathe

[tryingtohaveitall]

That is a hard situation and I supposed it depends on what is happening. I can certainly see if the parents need time to digest the news themself before dealing with the child's questions. I definitely think the child needs to be told, but I don't think the staff should do it before the parents are ready.

I can't imagine being in their shoes and I try to NEVER judge people in such a terrible situation.

[rant]

Thanks for the reply, and the thoughtful answer.

My question to you:

What would you tell the daughter if she asked you what was wrong with her?

[OttawaRPN]

This is a good example of parents believing they are doing right by the child, but in fact doing their daughter a huge disservice. Kids of all ages are very perceptive and figure things out on their own, but sadly this may be a case where the daughter hears it, either deliberately or accidentally, from someone else. There are age appropriate ways to relay bad news, giving the facts but downplaying the negatives and reinforcing the good stuff. Kids are a heck of a lot more versatile than we given them credit for. I sincerely hope these parent's decision to withhold information that the daughter has every right to know, is simply a temporary thing until they deal with their own emotions.

It sounds like the parents need a lot of teaching and support. Has SW been involved?

[rn4ever?]

You'll have to call your ethics committee on this, also, I believe that it has something to do with culture at times. Where I come from, it is not uncommon that family members request this kind of thing-----to not let the sick loved one know his/her diagnosis-----especially if he/she is terminally ill. I am not saying it is ethical or right. But I have witnessed this myself many times. And what's interesting is that patients who seem to not know that their time on earth is limited due to an illness live longer than what was predicted by the healthcare staff when they don't know how sick they really are. Could be psychological. Perhaps the stress of knowing could negatively impact the patient and thus speed up the dying process? I didn't make any study. It's not scientific, but it's just an observation.

[hiddencatRN, BSN, RN]

Definitely involve the ethics committee. We had similar discussions in class about situations where family didn't want patients to know the diagnosis.

Even though it might seem obvious that the patient has a right to know....what if the patient doesn't *want* to know? What if the family, who knows the patient better than we do, is in fact acting in that patient's best interest in shielding them from knowledge they don't want?

[AgentBeast, MSN, RN]

These parents are a perfect example of why there should be licensing requirements to be able to reproduce.

[OttawaRPN]

Definitely involve the ethics committee. We had similar discussions in class about situations where family didn't want patients to know the diagnosis.

Even though it might seem obvious that the patient has a right to know....what if the patient doesn't *want* to know? What if the family, who knows the patient better than we do, is in fact acting in that patient's best interest in shielding them from knowledge they don't want?

Unless the parents are mind readers there is no way they could possibly know what the patient wants, they can assume based on what they perceive to be good judgment but that's about the extent of it. We tend to project our own biases on others under the illusion it's in their best interest, but it is still our own bias no matter how we rationalize. Only the patient knows what the patient wants.

[OttawaRPN]

These parents are a perfect example of why there should be licensing requirements to be able to reproduce.

Wow, that was harsh. Am I missing something here?

[hiddencatRN, BSN, RN]

Unless the parents are mind readers there is no way they could possibly know what the patient wants, they can assume based on what they perceive to be good judgment but that's about the extent of it. We tend to project our own biases on others under the illusion it's in their best interest, but it is still our own bias no matter how we rationalize. Only the patient knows what the patient wants.

And you can't ask someone if they want to know that they are very ill without telling them that they are ill. I think it is not something that is so cut and dried. There are cultural differences in the desire to know as well as individual preferences, and the importance placed on knowing is a bias itself. This situation is all the more complicated because the patient is a child. Aren't we taught that parents are the experts on their child?

These parents are a perfect example of why there should be licensing requirements to be able to reproduce.

I agree that this is harsh. A woman just killed her baby for interrupting a computer game, and THIS family is a perfect example of the need for reproductive licenses?

[BrnEyedGirl, BSN, MSN, RN, APRN]

I'm not sure how I feel about this as a nurse, and I don't work in peds,..however as a Mom I like to think that I know my child better than anyone. I can't imagine being in this position, but I'm sure I would need time to

think about this, ask all the appropriate questions, do some research and pray.

I would want to try to prepare myself for all of my daughters questions, know what I'm going to say, and how much I'm going to say. I would want to have all the appropriate diagnostic results and a plan before I tried to explain something to a 9yr old that I can't even understand.

This is a tough spot to be in and I don't envy you. Breaking the parents trust right now would not set up a good relationship for what is going to be a long hard road on your unit. I would think, that at least for now, it would be best to allow the parents some control here,...they have to be feeling very scared and helpless right now.

[rn4ever?]

I also want to add that in my country of origin, when I was a nursing student, we had an elderly gentleman who had brain cancer and was terminally ill. The children requested to staff that his actual condition be not revealed to him. The front of the chart was marked as such-----in black, bold letters, with a sharpie. Whenever staff was asked, this was the response: “You’ll have to talk to the Doctor about it because he makes the Diagnosis”. And then he would be quiet afterwards. It seems like the family really knew him better. He would ask about his condition but it also appeared like he didn’t really want to know. I am not saying what happened was right or ethical. But I am just conveying an actual situation that happened many miles away many years ago. I don’t know for sure what are the legalities of such in the USA. Better ask about it to be sure.