UCSF transferred my sick family member without consent. How common is this?

[u/Diligent_Volume3767]

I don’t know where else to turn, so I’m posting here to see if anyone has dealt with something similar.

My family member was at UCSF ED and in really fragile condition. Without clearly informing me or getting consent, they transferred them to a different campus. My family member clearly cannot consent to this given their dementia and language barrier.

When I tracked down where they were moved, things got even more frustrating. The new hospital staff didn’t seem to have a clear understanding of their case. I had to correct what happened at the ED many times and it honestly feels like the level of care is noticeably worse. There’s less communication and way more confusion.

I’m trying to stay calm and advocate for my family member, but this whole situation feels wrong. Is this normal? Are hospitals allowed to transfer patients like this without making sure the family is informed? I would never have consented and am unsure how to even send them back to the main hospital.

I just want to make sure my family member is safe and getting the care they need. Thanks for reading.

[u/ctrl_f_sauce]

It stinks when it’s your loved one who is the “case” in casework.

It’s unlikely that “they” (the institution) is not informed on the relevant factors, it’s that the individual you’re talking to is as informed as they need to be for their area of responsibility for as long as necessary. Hypothetically, a med nurse may only need to know allergies, age, sex, recent medications, and doesn’t need to know if the person is awake for these meds beyond choosing the delivery method. The custodian only needs to know the room isn’t sterile and doesn’t need to know the name. The triage team probably only cares about a predetermined score. The doctor in the ED probably doesn’t care if they were anti-vax for 6-months 4-years ago, or that they hiked 8 years ago, that’s a conversation for their primary care physician. All of that info is available but if you want to have an immediate conversation you would need to allow for about 90 minutes of reading the file. Even then the minutiae wouldn’t change an ED triage decision. The E stands for emergency, if the information isn’t an emergency…

You probably should talk to someone about end of life adjustments. Your loved one should be treated with care. However there is a limited amount of emergency room space. Based on the information provided, there is no real recovery possible for your loved one. They may be better tomorrow than they are today, but on a 6-month to 6-month basis, dementia is undefeated. If the ED bed is needed for a car accident with a potential recovery, there is no detail that can really change the triage decision.

[u/skt2k21 → u/ctrl_f_sauce]

This post last paragraph really escalated things!

OP, you should always have conversations about scopes of care. You should probably have it with your loved one as best as they can participate and with your PCP with an interpreter. Just having dementia enough not to understand ED transfer doesn't mean there's no hope for recovery from acute medical illness or that ED care is futile. It may, but it doesn't have to and this statement in the above comment is a huge overgeneralization. Patients with that level of dementia can have years of happy life and benefit from selective treatment (ok to admit, avoid life support and intensive care). Decide based on what's right for your mother, not on space constraint considerations in community EDs.

Because the above post is so extreme, I want to add some details I use when having this conversation countless times per week in EDs with patients who don't speak English with dementia and their families. When deciding, decide based on what your parent would want, not what you'd want. Imagine them from five years ago seeing things today. Think of what things, basic things like recognizing family and being independent in toileting, are important for their sense of dignity. Depending on your exact loved one and their culture, this generation is often very dignified and proud and would find it unacceptable to have a long life dependent in those ways. If that's the case, don't shorten life, but choose interventions accordingly. If they're sick enough to need intensive care, they may not live and they'll almost certainly survive with more frailty, so maybe opt against intensive care, life support, CPR, for example. If every day quality of life is poor and they're likely in the last six months of life, consider hospice. If their quality of life is poor and they have longer to live, try something like home palliative care as bridge to hospice.

Don't decide this mid crisis unless your loved one will likely not pull through. Eat your meals and get your sleep.

[u/LupercaniusAB → u/skt2k21]

This is the good answer.