Ethics

[chingay]

I have a hypothetical situation that I need input from other nurses. Let's say that there is an individual that has dementia, schizophrenia and has a legal guardian. This individual resides in an adult care home. the prescriber prescribes an LAI with the guardian's approval. The prescriber ask you as the nurse to give the injection monthly, but you have to lie to the patient and inform them that the shot is a "corticosteroids or another medication". When the patient ask if they can see the lab results that justifies the need for the shot, you are ordered to say I don't have it, but it is an ordered medication. Patient is not having any active psychosis, not in crisis. As the nurse being ordered to give the injection, are you going to lie to your patient?

[MunoRN, RN]

I had a vague recollection that the Organ Procurement Organization in my region had a rule on this, I had the chance to ask them yesterday and they confirmed they do not work with any facilities that do not disclose this to kids. The reason is that there is apparently evidence that the distrust the creates increases the likelihood of transplant failure down the road since the kid will be far less likely to engage in the required follow up and ongoing maintenance. It's essentially seen as a strong predictor of medical non-compliance, which often removes patients from transplant eligibility.

The transplant coordinator was taken aback that this was still a thing, she had thought keeping medical issues and proposed treatments from kids had gone away back in the 80's. She correctly pointed out that everything we've learned about disclosing this sort of information to kids is that they are far better equipped to hear this information, it's adults that often don't cope well. In my experience, what's hard for parents is having the responsibility of deciding to tell the kid what's going put on them, just don't give them a choice and they're typically more relieved than angry.

I don't doubt that there are those in hospitals who might consider it easier, or at least less complicated to keep a kid in the dark, which is why the kid has a nurse, our job is to advocate for the patient above all else, a core part of which is keeping them informed.

I think nurses often assume that disagreeing with 'the-powers-that-be' involves having to chose between their job and their professional / licensure responsibilities, but nurses often forget that their job descriptions often include something to effect of requiring that the nurse follow the requirements of their license, so there's not particularly good legal basis for firing a nurse for doing what their license expects of them.

[adventure_rn, MSN, NP]

11 hours ago, MunoRN said:

I had a vague recollection that the Organ Procurement Organization in my region had a rule on this, I had the chance to ask them yesterday and they confirmed they do not work with any facilities that do not disclose this to kids. The reason is that there is apparently evidence that the distrust the creates increases the likelihood of transplant failure down the road since the kid will be far less likely to engage in the required follow up and ongoing maintenance. It's essentially seen as a strong predictor of medical non-compliance, which often removes patients from transplant eligibility.

The transplant coordinator was taken aback that this was still a thing, she had thought keeping medical issues and proposed treatments from kids had gone away back in the 80's. She correctly pointed out that everything we've learned about disclosing this sort of information to kids is that they are far better equipped to hear this information, it's adults that often don't cope well.

It's great that your agency has a policy like that, and it makes so much sense. I completely understand why transplant teams should have a vested interest in requiring that families comply with the practice standard which will have the best outcome for the transplant recipient, and I've seen teenagers come in with rejection (and an inability to be retransplanted) in part because they have mistrust in the medical team (not related specifically to withholding transplant info, but I could certainly imagine that happening). One of the hardest parts for me about this debate is that our practice is decades behind the actual, published evidence, which shows again and again that withholding information from kids doesn't benefit the patient, family, or team. And even when we bring that up to the provider team (again and again), it's brushed off as 'not being the right decision for this specific family/child,' even though keeping kids informed is our standard of practice unless parents specific request otherwise.

11 hours ago, MunoRN said:

In my experience, what's hard for parents is having the responsibility of deciding to tell the kid what's going put on them, just don't give them a choice and they're typically more relieved than angry.

My experience has been the opposite. For us, it's almost always parents who are frustrated with a long, drawn-out medical course that isn't going as expected; they're at odds with the medical team, digging their heels in, trying to regain some semblance of control. They feel like they don't have any control over how their child is doing, and being the gatekeeper for their child's medical information makes them feel as though they're protecting them from a medical course that hasn't gone they way they'd hoped. When we have a good relationship with families and explain that withholding medical information can be harmful, they will generally listen to us. When we try to explain this concept to a family who is already belligerently upset with us, the response is, "Screw you, who are you to tell me that you know what's better for my child than I do." The team-patient-family dynamic is generally in so much turmoil to begin with that the providers feel as though going against the family wishes will throw an already turbulent social situation into further unrest, which really may not be best for the child. Social work, management, and ethics committee are almost always already involved.

11 hours ago, MunoRN said:

I don't doubt that there are those in hospitals who might consider it easier, or at least less complicated to keep a kid in the dark, which is why the kid has a nurse, our job is to advocate for the patient above all else, a core part of which is keeping them informed.

I think nurses often assume that disagreeing with 'the-powers-that-be' involves having to chose between their job and their professional / licensure responsibilities, but nurses often forget that their job descriptions often include something to effect of requiring that the nurse follow the requirements of their license, so there's not particularly good legal basis for firing a nurse for doing what their license expects of them.

20 hours ago, FolksBtrippin said:

This is going to seem harsh, but as a nurse you really are not doing your job if you are not informing your patient when you know it is to their detriment to not be informed. I am not usually this critical, but I find this unacceptable.

We have licenses because we are expected to uphold nursing values, even when policy fails.

Muno, what you are saying makes so much sense in theory, but is so difficult to implement in practice. We are advocating--to the provider team, to the ethics committee, to nursing management. These cases create a ton of unrest for nursing, and we voice those concerns again and again to the providers (one-on-one and in multidisciplinary conferences) and to nursing management. Given the amount of moral distress such cases cause for staff, we exhaust just about every avenue we have.

As I said before, it really is outside of our scope to deliver diagnostic information. There was a post just a few days ago about how nurses can receive disciplinary action for simply delivering straightforward lab values. In just about any other situation, it would be tremendously inappropriate for me to tell a patient (for the first time) that they had cancer or that they were in end-stage heart failure and would need a VAD; if the medical team is specifically withholding this info (and instructing me to be complicit in their withholding of it), it doesn't suddenly become appropriate for me to share it. I would still feel as though I was acting entirely out of my scope to tell a patient who has never received a formal diagnosis/treatment plan, "I'm giving you chemo to fight your cancer." I'm sure I'd get written up, possibly fired, and potentially reported to the BON for acting outside of my nursing scope (by deliberately delivering diagnostic information that in any other situation would be entirely inappropriate for me to deliver).

It puts nurses in a profoundly difficult situation, especially since it's fairly easy for providers to avoid the topic (since they see the patient for only a few minutes), while we interface with patients all day, and we can't do our job to the highest moral standard because of it. I think that the feedback from FolksBtrippin is somewhat unfair; yes, the situation is horrible, but if you were in that situation, what would you do differently? As Muno suggested--we've advocated, loudly and persistently. When that gets you nowhere, most people either give up, become burned out, and/or quit. And then you end up with a PICU which has 50% annual turnover and is staffed almost entirely by new grads (which is incredibly unsafe).

IMHO, the situation requires a culture change with buy-in from nursing, management, and the provider team. But despite the all of the decades-old evidence supporting informing kids about their care, many peds teams aren't willing to make that culture shift. I'm sure we're all well-aware of how painfully difficult it can be to change deeply-seated attitudes and behaviors when it's "what we've always done," even when there's plenty of evidence to the contrary.

[FolksBtrippin, BSN, RN]

2 hours ago, adventure_rn said:

It's great that your agency has a policy like that, and it makes so much sense. I completely understand why transplant teams should have a vested interest in requiring that families comply with the practice standard which will have the best outcome for the transplant recipient, and I've seen teenagers come in with rejection (and an inability to be retransplanted) in part because they have mistrust in the medical team (not related specifically to withholding transplant info, but I could certainly imagine that happening). One of the hardest parts for me about this debate is that our practice is decades behind the actual, published evidence, which shows again and again that withholding information from kids doesn't benefit the patient, family, or team. And even when we bring that up to the provider team (again and again), it's brushed off as 'not being the right decision for this specific family/child,' even though keeping kids informed is our standard of practice unless parents specific request otherwise.

My experience has been the opposite. For us, it's almost always parents who are frustrated with a long, drawn-out medical course that isn't going as expected; they're at odds with the medical team, digging their heels in, trying to regain some semblance of control. They feel like they don't have any control over how their child is doing, and being the gatekeeper for their child's medical information makes them feel as though they're protecting them from a medical course that hasn't gone they way they'd hoped. When we have a good relationship with families and explain that withholding medical information can be harmful, they will generally listen to us. When we try to explain this concept to a family who is already belligerently upset with us, the response is, "Screw you, who are you to tell me that you know what's better for my child than I do." The team-patient-family dynamic is generally in so much turmoil to begin with that the providers feel as though going against the family wishes will throw an already turbulent social situation into further unrest, which really may not be best for the child. Social work, management, and ethics committee are almost always already involved.

Muno, what you are saying makes so much sense in theory, but is so difficult to implement in practice. We are advocating--to the provider team, to the ethics committee, to nursing management. These cases create a ton of unrest for nursing, and we voice those concerns again and again to the providers (one-on-one and in multidisciplinary conferences) and to nursing management. Given the amount of moral distress such cases cause for staff, we exhaust just about every avenue we have.

As I said before, it really is outside of our scope to deliver diagnostic information. There was a post just a few days ago about how nurses can receive disciplinary action for simply delivering straightforward lab values. In just about any other situation, it would be tremendously inappropriate for me to tell a patient (for the first time) that they had cancer or that they were in end-stage heart failure and would need a VAD; if the medical team is specifically withholding this info (and instructing me to be complicit in their withholding of it), it doesn't suddenly become appropriate for me to share it. I would still feel as though I was acting entirely out of my scope to tell a patient who has never received a formal diagnosis/treatment plan, "I'm giving you chemo to fight your cancer." I'm sure I'd get written up, possibly fired, and potentially reported to the BON for acting outside of my nursing scope (by deliberately delivering diagnostic information that in any other situation would be entirely inappropriate for me to deliver).

It puts nurses in a profoundly difficult situation, especially since it's fairly easy for providers to avoid the topic (since they see the patient for only a few minutes), while we interface with patients all day, and we can't do our job to the highest moral standard because of it. I think that the feedback from FolksBtrippin is somewhat unfair; yes, the situation is horrible, but if you were in that situation, what would you do differently? As Muno suggested--we've advocated, loudly and persistently. When that gets you nowhere, most people either give up, become burned out, and/or quit. And then you end up with a PICU which has 50% annual turnover and is staffed almost entirely by new grads (which is incredibly unsafe).

IMHO, the situation requires a culture change with buy-in from nursing, management, and the provider team. But despite the all of the decades-old evidence supporting informing kids about their care, many peds teams aren't willing to make that culture shift. I'm sure we're all well-aware of how painfully difficult it can be to change deeply-seated attitudes and behaviors when it's "what we've always done," even when there's plenty of evidence to the contrary.

I don't want to be unfair. I think you have been put into an impossible situation.

It makes sense that there would be a lot of moral distress and consequently, turnover.

I agree with you that informing the patient of their diagnosis is the responsibility of the provider. I disagree that it is outside the RN scope of practice to do it and that it is BON reportable.

Still, you are put into a situation where you must either go against the whole team or follow your personal ethics. It's not reasonable for anyone to expect you to go against the whole team. That's not nursing, its activism.

I don't know where you live and what hospital systems these are. I encourage you to share the info.

I think you are right that it needs to be a cultural change. It isn't something one nurse can fix. Even if one nurse was to make the decision to break the rule and become an activist she would need a lot of support to make a real impact. She would need a fund, a legal team and connections with the press.

To provide contrast for you, I will share the practices of the child adolescent inpatient psych unit where I used to work in the recent past. This was highest level of psychiatric care for children ages 5 to 17.

Parents who want their child admitted and whose child meets criteria for admission sign a 7 day consent form. This means their child can be on our unit for up to 7 days. No more than that. The child will be there until discharged by the doctor. A parent may not simply take their child out once admitted. Our unit is locked. A parent may visit during special visiting hours only. The treatment plan is developed by the child, nurse and or social worker and is signed by the child. The parent does not sign the treatment plan. If the child does not want us to talk to the parent, we do not. Although we encourage the child to let us communicate.

A parent cannot sign another 7 day form once the time is up. This is state law. If the child requires further hospitalization after 7 days, the child must sign herself in if she is 13 or older or be involuntarily committed. In some cases a doc can write a letter stating that a child can sign herself in if younger than 13. Hopefully the parent is on board with the child and doc, but if not, it is still their decision. The parent has no legal say at this point.

[JadedCPN, BSN, RN]

In my experience it has never been nursing against doctors in regards to nursing want to tell the child but the doctors don’t want to. It is always the team (nurses, doctors, PT/OT, etc) who all agree the child has the right to know, against parents who are very against the child knowing despite being educated on why it’s beneficial.

[JKL33]

Quote

I think that the feedback from FolksBtrippin is somewhat unfair; yes, the situation is horrible, but if you were in that situation, what would you do differently?

In kindness/sincerity, I don't think it was meant to be a personal indictment, and I don't think it's unfair. I had the same reaction. Even just as a matter of straight up practicality, how do you, say, administer medication to a patient while being sure to withhold enough information that they won't guess what commonly-known ailment you are treating? How would that go along with every other principle of doing anything to a patient (administering a treatment/medication)? Yes, there is phrasing things in age- and development level-appropriate terms (completely ethical) in order to help patients understand, and then there is phrasing things with the major underlying goal being that they won't find out what you're "really" doing.

I don't think that is appropriate nursing care except in rare scenarios - but not those that include parents' difficulty accepting the information or working with the care team.

Without disparaging the nurses in these wrenching situations, I don't think I could do it myself in a setting where it was not acknowledged as something that needed to change, with every effort being made to change it.

Are common (and generally successful) approaches not working, or not really being tried in a therapeutic manner? Sitting down and sensitively delivering bad news to parents, answering questions, conveying genuine concern.....and then (at the appropriate point) eventually bringing up, "We need to let [child] know...there are different ways people choose to do this (alone, together, with/without medical team present at first, etc) - - do you have any thoughts or preferences about what seems right to you in this situation?"

Regardless of rationale for making things worse for the child, there isn't a whole lot that is going to be worse in the long-term than prolonged lying by those charged with providing care and security. I think that's fairly well-established. So the overall rationale here just doesn't make sense.

If there's that much turnover and that much inexperience and all sorts of other havoc, this particular issue of ethics sounds like just another facet of a series of very poor decisions by this facility.

Do any of the nurses have any rapport with the physicians to speak of? I haven't encountered this much in the ED, but I've encountered other types of withholding/delivering devastating info that wasn't being handled with the ethical picture in mind. In each of those instances I went right to the MD and asked to speak in private and said, "Okay....I'm sorry but we really, really cannot let this go on (or go down) this way. It isn't right. I know it feels terrible, but this is what we have to do...[...]. Here's what I want to do [x, y, z]...and then I will help facilitate you having a conversation. I will support you....[etc.]"

Are people working together in these ways? Are nurses establishing rapports, like real patient/family/nurse rapports so that the family feels supported from the get-go and some of this doesn't get off the ground in such a negative manner to begin with?