Sick of hearing "We don't want mom (or dad) to know"

[TXRN44]

I hear that A LOT from the children of elderly patients who have recently been diagnosed with whatever disease process.... Many, if not all of them are able to grasp the diagnosis and deserve to know. It is their right, however the Doctor will inevitably tell the children and they will run us nurses down and tell us "please don't tell mom, we just don't want her to know she has cancer" or whatever it may be. I even had a daughter tell me not to let her mother know that she has been diagnosed as a type 2 diabetic. To top it all off, some of the doctors kind of go along with it, leaving it up to the family members to decide what to tell the parent. I am a patient advocate and so of course my patient is my focus, but it is very hard with family dynamics. This in particular has been getting me lately. I know that it is a horrifying diagnosis to hear "cancer" at any age, but pretending that it doesn't exist in your elderly parent doesn't make it go away. How do you deal with family members who demand you not speak of diagnoses to the patient?

[Fiona59]

The only time I've experienced this is with elderly Chinese patients. The family do not want their parent to know. It's almost like it's shameful. We have more than a few who don't speak English and the family acts as translators and get very hissy when a staff nurse offers to translate.

[jadelpn, LPN, EMT-B]

There is something wrong with this on a number of levels. The patient has rights. And their rights are up to the nurse to advocate for. And a patient regardless of age has a right to know. And to decide whom, if anyone, they would like to share things with.

It is up to your manager, the charge nurse, even the DON to be sure that the medical staff is aware that adult children do not have the right to get the low down on Mom or Dad's condition without the permission of the patient. That is basic in any facility. Patients have the right to privacy, have the right to direct their own care, and have the right to be completely involved in the diagnosis and treatment of same.

If this is not happening in your unit, then you need to go to your compliance officer, your risk managment team, the ethics board. Something needs to change. Don't ever put yourself in a spot where you are blamed for not advocating for a patient. That "Dr. Such and So told me not to tell the patient" is NOT a viable excuse if this were to be in the courts--and it will only take one spry 70 year old who lives with diabetes unknowingly and loses limbs or goes on dialysis to sue the heck outta everyone they can.

Just not good practice.

[dudette10, MSN, RN]

I get very frustrated when an adult child of an alert and oriented patient thinks being designated POA means the adult child gets to make all the decisions. I even challenged one of our doctors whose MIL was hospitalized (alert and oriented) when he insisted on signing the consent. I pointed out that he wasn't even the POA, and his MIL was able to understand the procedure and sign the consent herself. He reported me to the NM, and I got a "talking to." Of course, that particular NM will throw the nurses under the bus at any given opportunity. The whole situation was very demoralizing.

[OneDuckyRN]

I get very frustrated when an adult child of an alert and oriented patient thinks being designated POA means the adult child gets to make all the decisions. I even challenged one of our doctors whose MIL was hospitalized (alert and oriented) when he insisted on signing the consent. I pointed out that he wasn't even the POA, and his MIL was able to understand the procedure and sign the consent herself. He reported me to the NM, and I got a "talking to." Of course, that particular NM will throw the nurses under the bus at any given opportunity. The whole situation was very demoralizing.

That's not even legal, and that doctor should have known it. Even if he WAS the POA, there's a process to get the POA activated. He should know that too. That he got you "talked to" by your NM is very disturbing.

I'm pretty sure I'm not telling you anything new, so I'll stop preaching to the choir now. I just couldn't let that one go by...

[suanna]

There are specific cultural groups where this type of behavior would be acceptable, but in American society, how can this even come up? How is it that children are being given private, protected health care information before or exclusive of the patients? A health care power of attorney dosen't remove the patients rights to make health care decisions for themselves- only protective guardianship appointed by the court could make the situation you describe possible without violating HIPPA. A doctor "going along" with violating patients legal rights would provoke a call the the hospital's or state medical board's violation of ethics department if I was involved.

[TheGooch]

In nearly every situation I encounter the children of the elderly patient are the ones told of the condition and not the patient. It maddens me.

Isn't that against the law? Unless they have a POA they legally have no right to this information unless the patient says it's okay, am I correct?

[annie.rn]

I worked hospice for 6 months and in that short a period of time I probably had 6 patients whose families gave strict instructions to not let the patient know that they were receiving care from hospice. One patient was told by his family that the hospice staff were visiting nurses from the VA. It was maddening. I got bawled out once by a family member of a patient for talking about the dying process and symptom relief w/in earshot of the patient. According to him: "I was a hospital chaplain for xx years and that is one thing you NEVER do!" Yeah, whatever. I loved hospice nursing but have not gone back into it mainly b/c I couldn't deal w/ the family drama surrounding illness/death. And, I don't like to play "let's pretend!" (....Mom doesn't have cancer, Dad is getting visits from the VA, etc.) Most times I think it's the family that can't handle it and they somehow think it's less real if the patient doesn't know. They don't want to accept their loved one's mortality..

[KelRN215, BSN, RN]

OP, unless your patients have been judged incompetent by the courts or have specifically stated "share my diagnoses, test results, updates on my condition with my children and not me" then what your facility is doing is blatantly illegal. It's not surprising as many clinicians misunderstand the law and what a health care proxy actually is/means. Even if the child is the patient's healthcare proxy, it does not apply if the patient is competent and able to make decisions for himself.

I found the reverse problem to be true in pediatrics. We're so used to discussing everything with the parents first that people would often forget when we had 18, 19, 20 year olds as patients that THEY are the ones who should be addressed. More than once, I saw nurses have an 18 year old's parent sign the discharge papers and not think anything of it. I think I was one of the few nurses who paid attention to it since I was diagnosed with a serious medical condition at 17 and 364 days and it irked me beyond belief when MDs would address my mother and not me in the year and a half that followed. I was not allowed to drive because of my medical condition so she had to come with me to appointments and not one MD ever once asked me if it was appropriate that they invited her back into the room with us. For this reason, the day I got my license back 6 months post surgery, I banned her from attending any medical appointments with me.

Anyway, I recall once taking care of an 18 yr old on a night shift who was pre-op first case. The resident came up to do the consent and when I was doing the pre-op check list (on the list is that consents for surgery and anesthesia are done) later that night, I noted that the mother was the one who signed it. When I stated "this consent isn't valid", not one other nurse believed me. Everyone's response was "well maybe the mother is her healthcare proxy." It. Doesn't. Matter. The mother's consent would only apply if the daughter was unable to sign for herself. She was perfectly alert, oriented and competent. Also inappropriate when, on rounds, MDs would assume that it was ok to have conversations in front of the parents if they happened to be there. I always asked my 18+ patients if they wanted their parents to leave the room for conversations or if it was ok to talk to parents if they called. Patients have rights and, no matter what the intentions, violating someone's autonomy is not ok.

[angikat]

This happens a lot in LTC. I had a patient who was also a hospice patient. Her family didn't want her to know her diagnosis or that she was a hospice patient. At times she would get upset with the staff because she felt as though her health was not being taken seriously and would request to see a specialist to find something that could be done. She felt as though she was being denied medical care when in fact no medical care could be given to make a difference. This makes the nurses seem uncaring from the patient point of view and often makes the patients agitated.

Sent from my iPhone using allnurses. Angi/LPN (?RN)

[dudette10, MSN, RN]

This happens a lot in LTC. I had a patient who was also a hospice patient. Her family didn't want her to know her diagnosis or that she was a hospice patient. At times she would get upset with the staff because she felt as though her health was not being taken seriously and would request to see a specialist to find something that could be done. She felt as though she was being denied medical care when in fact no medical care could be given to make a difference. This makes the nurses seem uncaring from the patient point of view and often makes the patients agitated.

Sent from my iPhone using allnurses. Angi/LPN (RN)

Your example, out of all given here, makes me the saddest. Can you imagine feeling like something is wrong with you, but your caregivers and family are acting like its no big deal? No wonder she was agitated...it would make me agitated too. It's cruel!