Ok in my state it's called Durable POA for everything except healthcare and 'Healthcare proxie' for what most other states call 'Medical POA'. So I have durable POA, didn't actually get the papers physically signed for the proxie, but I definitely know my mom, currently being held in a hospital for 2 and a half weeks, with a severe case of 'hospital delirium'.
So now here we are, with everyone's favorite catch-22. She does not understand why she's there, but she just wants to go home. The staff are delighted that I visit, but tell me as little as possible.
Before being admitted, I would communicate with doctors via her patient portal. I would sign a message with [her name] + [my name]. And begin a correspondence with "This is ------'s son helping her access this.
It was a convneient way to get a refill for an RX, etc. etc.
After coming in to the hospital they kicked me off. And her capacity has gone from mild impairment to very bad. I had maybe a minute of access to see that they had restrained her and put her on seraquil; and another stronger anti-psychotic. When I asked, they did not deny it. But I wouldn't have known to ask, were it not or the 2 min that I had access to her patient portal.
I told them this, and asked them if I could please get access again. Just in case, of course I asked my mom if she was ok with that. The notion that she wouldn't be was laughably absurd to her.
Her English was never great, but now that she doesn't generally know the year or where she is, I have to ask her such things in Russian, and with much constraint they occasionally get a russian interpreter in there (and I have to guess and play 'detective' to figure out why).
Once I came by and the interpreter was there and so was the attending doctor. So I asked her, "Would you like me to have access to your medical records?" She said "Of course". The interepreter translated. And I asked, if I could please have access again. Doc replies:
"Well I'll definitely make a note that she said this and put it in her chart."
I take a breath, "Well that's great Doc, but see the problem is, I can't access the chart (remember?). Any chance you could maybe fax or email me this note?"
"No I can't do that" he replies.
------------
At this time I was not yet aware of HIPAA release forms, nor did I know yet about Personal Representative status. Healthcare Proxie requires two witnesses, and 2 visitors is the maximum allowed. And indeed, she really could not show the required capacity to sign the proxie form.
So until this new idea I was planning to just come back with the hospitals standard HIPAA compliant medical records release, and establish her contractual aka testamental capacity which she already passed when testing it. As in, she needs to understand who I am, what she is signing, what the risks are, and voice her decision about it.
That she can do. Furthermore, I've been with her all along, and I'm the only one she could trust to interpret medical records for her, for good reason!
Perhaps I would need an attorney or a notary to add a note about her capacity.
Now I have a simpler idea:
I walk in. In Russian I remind her "Hey mom, I can't do anything for you or really get anywhere in getting you out of here without knowing what is going on, remember? So do -YOU- want to see -YOUR- chart? OK, and I can help you unerstand it as usual, ok? She will say of course.
Then I tell the nurse or who ever is there, my mother just told me that she wants to see her chart, and needs my help understanding it. (due to english, to due delerium, and who knows what else, but seeing the chart would reveal the rest of the story!)
I can't imagine what they could come up with to justify refusing such a request?
Otherwise I'm not even sure the HIPAA release form approach will really work because it's jsut another department at the very same hospital that will decide if the form is good enough, and well, they could just say no.
Feedback cherished!
OTOH, that could also describe used car salesmen, and I'm sure some other trades if I took time to think about it. Some plumbers I've interviewed could fall in that category as well.
update: entry of 'how??' for Social Workers:
Any Social Worker that engages with people in the field, -should- be accredited by an acronym beginning with the letter L, not M. LCW, LISW, etc.
If there is an L, that means that person has an active license, and your states beaureau or office of professional licensure will allow for their license to be looked up, and any formal complaints would show. Same for electricians, real estate agents, and so on. If they do not tell you their full name, it should be demanded.
(advanced) They may have a 'compliance' department and/or a risk mitigation department in their organization. Possibly an ethics board as well.
One doctor advised me to make final preparations, as did one ICU nurse. Instead I focused on what could be done, including mobilizing his church support when he did emerge from the coma. He then lived until 2018 and died 6 months short of 100. (He also built a woodshop for himself during period.)
Second "let him die" events occurred a few months before he did pass. A sort of teeny bopper hospitalist told him, in front of me, and two church friends (w/o even considering who they might be), that "you've had a long life; it's time to just let go." She harped on the topic.
When I'd had enough, I told her firmly to back off. Although I don't recall specifically what I did say, I made it clear that she knew nothing about his personality, his determination, his hardening through Natl. Guard and WWII flight service, or what he was thinking now. (She never asked; she just took a "you should be considering death" approach.
I also told her bluntly that I didn't think she had the maturity or experience to analyze his mind or advise ANYONE what she thought should be done. She was stunned and clearly wasn't used to such frank criticism. She began to walk out before I had even finished. I don't recall if I contacted the charge nurse or administrator, but I got a doctor with a good reputation for dealing with older people.
ITRR, thanks for sharing your experience. For a time I wondered if I might have been too blunt, but still to this day, I don't regret it.
NerdMafia, stand your ground.
I don't feel bad for what I did. If the staff would have behaved as medical professionals the situation would not have been escalated to the point it was.
I think these people get god complexes and too many people defer to their knowledge as authority and get intimidated. I think that an attitude because you are questioned is the biggest, waving red flag there is. A competent doctor welcomes a second opinion and others input. It's the idiots that think they are infallible that make going to the hospital as dangerous as playing Russian roulette.
I raised so much ruckus that there were 12 administrator, nurse, social worker and patient advocate employees in my dads room, because I wasn't going to go away, he couldn't advocate for himself and I wasn't letting strangers make health care decisions for my dad.
I believe that they would have let him die if I didn't raise a fuss. He was in active heart failure, semi unconscious and an idiot hospitalist said he doesn't want any intervention and placed a DNR on chart. All of this took place while I had walked to the elevator to bring my husband to the room. Maybe 3 minutes away from the room. BS, I doubt the conversation ever took place.
Raise hell to ensure some incompetent hospitalist doesn't use her as a guinea pig. Most of them work there because they are to ignorant to make it in private practice and don't have enough brains to blow themselves up with.
I would seek emergency guardianship if it was my mom and this was happening. I would also make sure and write down names, with spelling and job titles and I would start filing complaints.
Best of luck with this nonsense
1. hospital advocate - done - did not return phone call, but 90% chance that complaint was relayed to mother's staff
2. ombudsman at state DHH - Department of Elderly Affairs - not yet
3. Office of Professional Licensure for: Physicians - not yet
4. relevant Social Workers - done - result - pending(very likely the problem started there)
5. Federal DHH - proper complaint procedure specifically for violation of Right to Access - form filled, 4 page summary of complaint - complete. Might file tomorrow
6. Guardianship - member of mother's attending staff, said hospital would be seeking Guardianship. She was extra unpleasant, and a different Doctor may have internally stepped in to oppose. However, this danger cannot be risked. Considering premptive petition for Guardianship to myself.
7. State AG - considering
8. Various Senior and Alzheimers related organizations - considering
-----------
Escalations
-----------
- President of Hospital - Escalating from no call back from advocate
- Social workers - how??
- Doctors Nurses - Present case to high profile Malpractice attorneys, possible landmark case - pending
- Political - _______Redacted for Now
Am I missing anything?
thanks!
"Mm. If only the stupid doctors devoted more of their time to the fine detail of HIPAA regulation and didn't waste so much of it on patient care."
Exactly! Very simple and straight forward common sense, would suggest that just because I did not sign a paper in time with two witnesses, shouldn't make such a drastic difference.
It turns out, not only is this such a huge problem that DHH is helping people leverage huge lawsuits, but they are also hammering out a new proposal to amend HIPAA legislation.
In fact that Request for Comment stream is currently live, where Healthcare practioners, stake holders, and individuals are sharing their experiences.
The focus is on adding some clauses to forbid excessive hurdles for people in need of access to their own or loved ones' medical records. And, precisely as you say, to relieve the healthcare industry from having to constantly worry about legalities.
https://www.regulations.gov/document/HHS-OCR-2021-0006-0001
It is inevitable that you will get denials of valid requests due to misinformed administrators at hospitals and doctors’ offices and in many cases you will receive an incomplete set of the medical records. The authorization should request that the medical record administrator identify any record withheld with sufficient particularity to support a further effort to secure full disclosure should you believe it is necessary.
The medical records administrator should be asked to warrant under oath that all requested records have been fully disclosed or identified as withheld. This request could be ignored and there are no consequences if it is. But at least you have made your best effort to address this potential problem.
What can you do if the hospital still refuses to honor your HIPAA authorization?
Many medical records administrator (believe it or not) are sorely misinformed about HIPAA and are threatened by new authorization forms that are not on forms generated by the NYS Department of Health. When this happens, you should send a letter by certified mail to the medical records administrator with a specific warning that you intend to file a complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services for its violation of HIPAA.
You might want to add a footnote at the bottom of your letter referencing a multi-million fine levied by the Office of Civil Rights for failing to comply with valid HIPAA authorizations against a hospital in Kentucky. This should get their attention.
Keep in mind that you are not alone. Hospitals and doctors routinely ignore HIPAA (out of ignorance and stupidity most of the time) and they will bank on the fact that you will not know your rights and just give up. Don’t give in to this nonsense! Be proactive in enforcing your rights."
https://protectingpatientrights.com/blog/six-requirements-of-a-valid-hipaa-release-authorization/
It's just a small legal practice that fusses in particular about medical malpractice. I find the writer's unrestrained vocabulary on these issues a rare treat and pretty useful actually. Too bad i'm not in NY state.
I brought up my idea in a group call with MD + NP, the attending healthcare staff.
"How would you feel about me coming by to get my mother to sign -your- organizations standard HIPAA compoiant records release form? Would you assist in determining capacity?"
"That is not going to happen. WE already did a comprehensive assessment of her capacity, and she does not have it. She cannot sign any forms, and we will not honor the request."
I respond
"Sorry, but I respectfully disagree with your legal counsel on this matter. Capacity is fluid, and the only assessment that would be relevant to her signing the form would be an assessment done at the time she signs the release."
them:
"I can see your upset, and I have no doubt you love your mother"
"That's not an issue that I wanted to discuss." - I said
when I asked if -she-, my mother, could see her own records, I just got crickets in silence in response.
By the way, this is important.
The U.S. Department of Health and Human Services, Office of Civil Rights, has been jumping and screaming with excitement about one of the 5 or so campaigns they have pushed for in the last year or two years. One of them is titled 'Right to Access".
It is in fact a violation of HIPAA to deny one access to their records, or to deny one the right to add their own commentary to their medical records if they disagree with anything in there.
OCR gladly takes complaints, and ...drum roll.... is hungry to take on injury claims for people that have been denied this right!
youtube:
https://www.youtube.com/watch?v=FKTHncn-5Vs'
3 page fact sheet about 'Right to Access":
https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/consumer_ffg.pdf
this page includes individual links to each of the 20 cases that OCR has taken on and won , settlements in the millions for each ibe
https://www.hhs.gov/hipaa/newsroom/index.html
-------------
OK so fine and then next I mentioned that I would unfortunately have to resort to subpoenas and ultimately pursue a malpractice claim. I could tell this was -not- this lady's first rodeo.
Without a flinch or pause, she voiced her welcoming approval of such an action and proceeded to threaten me:
me "OK well can I still visit my mom?
her: "Well subject to hospital rules.." *Now suddenly dismissing all of the research that has been done and the advisory publications , that really stress the importance of allowing loved one's to visit without any restriction if there is any hope of slowing down the cognitive decline for Alzheimer's, which give or take accounts for 70% of all dementia patients. Yup and the smooth threat right here:
"But I will say that if you come here and are disrupting our activities the police will come and arrest you"
me:
"Wow, not sure what exactly prompted you to say that just now? It seems like you have gotten the mistaken impression that I am violent or something like that? That's absurd. "
I pause and change my tone from argumentative to a theatrical sort of calm, calming , reassuring:
"Let me just reassure you that, I definitely would not be SO foolish as to sabotage my mother's future, and my own, by making anyone feel threatened by me? That would very stupid!
I intend to come either to simp;ly visit , or perhaps to tend to some legal matters with my mother.
haha "thank you for reassuring me about that"
me: "You are so welcome!"
and just one more awesome link on this matter:
I see, ok. I noticed how your two examples are interesting, in that they are like my prospective subpoena, specifically, that the subpoenas are served outside of the Discovery process. Or before it, or in lieu of it/a lawsuit.
form law.cornell.edu:
"A subpoena duces tecum is a type of subpoena that requires the witness to produce a document or documents pertinent to a proceeding. From the Latin duces tecum, meaning "you shall bring with you".
See, e.g., United States v. Nixon, 418 U.S. 683 (1974)."
That would be disappointing if this turned out to be another one of the very very few actions that can not be done Pro Se. Back to the books!
"Why are you assuming the hospital department will reject it?"
A fair question. I could tell the whole story from day one, but it would be a screen full.
The problem with not knowing what's going on, is that until I do know, I can't really make super reliable predictions. And there's a good chance I will try it anyway, but I can't just try everything.
A few assumptions that I can't know 100% are accurate, but close enough that I am accomplishing more with them than I was without them:
- After reading a transcription of an emergency meeting held by US congress people regarding HIPAA, right after that shooting in Connecticut, I finally felt affirmed in what I had witnessed. One of the main complaints, that various doctors and parents, were bring up was that healthcare professionals were using HIPAA as an excuse, as cover, to simply not have to answer to scrutiny when doing their jobs.
By not having to share the details of their care with loved one's of the patient, they could just do whatever they wanted.
This, I suppose became an issue when 'Protected' records were discovered after the shooting, or AFAIK, almost every shooting, where it was pretty clear that the person was about to go hurt a lot of people. And their psychiatrists, for example, could have told someone.
Well, that is an extreme example that does not directly relate here, but it is true that Doctors are misinterpreting HIPAA by applying it as their default. That's their policy, not the law.
They would not get in trouble with anyone if they chose to share my mom's medical records with me. She never asked them to keep them from me. She hardly even understands what medical records even are, even before the dementia. Practical things like that just did not interest her.
But I keep reading the same experiences, that I myself had with many different providers, and finally it all made sense.
Which brings me right to assumption #2:
2. the real reason they would prefer that I don't see the records, is because then they will have to account for what they have already done wrong.
e.g. I did not know, until those 2 minutes of access came and went, that my mother, allegedly, had become violent, and was running into other patients' rooms. Then when I brought it up they did not deny it. However they were presenting their whole position on the bed alarm, the anti-psychotics etc., as being for -her- safety-, because of some mobility problem.
If she had a mobility problem, how did she manage to slip off under their watch and get violent in other patients rooms?
After asking questions like that a few times, i quickly learned it was not productive. I was just get a blank stare in response. And sometimes a non-answer. They would , it seemed, use the distracting maneuvers that work so well on people with dementia, on me.
3. When I didn't yet know about HIPAA compliant records release forms, I had my mom -verbally- state that she consented to sharing her records with me. And a whole team of professionals, chose to -omit- the existence of the HIPAA release form. The truth , the whole truth, and nothing but the truth,
4. The internet. I keep reading more and more examples of people only getting access to such records after their loved one has died. I really would prefer to win this battle BEFORE that happens. Once she is dead, it won't matter that much anymore.
5. "How's she doing? Well she's very confused" - this is how every chat begins. Hey, I am confused too, ya know? Is often my response. Can you take a hint people?
Sorry this is getting to be longer than needed.
The simple idea, that this thread is named after, was that I would tell them my mother, wants to see her own records. HIPAA is crystal clear on that matter. In fact, the laws are phrased with particular emphasis on this. It even comes -before- all the privacy/secrecy stuff.
I appreciate the compliments; they mean a lot to me. You're very kind. But excuse me for a moment while I go outside to cool down as my face is becoming hot and red with embarrassment!
As to a Subpoena duces tecum, med mal attorneys used them frequently in 2 different situations:
1. When a medical facility wasn't responding to a patient/potential client's request for documents, and/or appeared to be deliberately delaying.
2. When accepting a potential client for a medmal case wasn't certain. The med files would be subpoenaed; the facility had to respond, and the attorneys could then have the medical history reviewed by their own in-house nurse, NP, or a physician experienced in the field, to determine whether or not a case existed. This was of benefit not only to the firm, but to the potential client, so he/she could understand why or why not a case could successfully be pursued.
That she can do. Furthermore, I've been with her all along, and I'm the only one she could trust to interpret medical records for her, for good reason!
Perhaps I would need an attorney or a notary to add a note about her capacity.
Now I have a simpler idea:..."
How is any of the subsequent ideas simpler? In what way?
The hospital is not going out of its way to obstruct you, it is straightforwardly the case that you can't have access to your mother's medical records because she hasn't signed the HIPAA. So get it signed, ask one of the senior staff to be present perhaps along with an interpreter to witness the process, and let it run. Why are you assuming the hospital department will reject it?
Regarding the all mighty subpoena, I began to read up on that, and it just kind of slipped off the priority back burner, and I totally forgot about it.
Escalating Tension(no problem!):
First of all, they already escalated the tension just fine by
a. casually omitting clearly indicated and appropriate information, such as the existence of HIPAA release forms, and so on. I left out my final words to the 'Doc' who was actually kind of over-sharing, compared to his colleagues, when he told me he would put what happened in my mom's chart.
I said, "It would be so much easier on everyone if you could just be more forthcoming. Do I seriously have to subpoena this information from you?"
His response was something to the effect of "Do what you gotta do"
b. Observing my interactions with my mom, and not having the simple basic common sense gut reaction of knowing that of course I am the one that cares for her, that knows every thing about her, and keeping things from me is torturous to me blatantly, and to my mom, vaguely, and thus catastrophically.
c. Mentioning, in a threatening context, that in lieu of explicit consent, a court will have to decide what my mom's wishes would be.
In other words, I don't mind tension!
Subpoenas:
I know that a subpoena will trump HIPAA, and I know that a subpoena does not actually require the judge, or 'court' to even see it or let alone approve it. Of course I will look the nitty gritty stuff up on my own, and seriously, thank you , for the wise words at the right moment to the right person who was about to totally forget about such a handy legal device.
Here's some cozy goodnight reading, or re-reading, that served as the framework from which I finagled my idea about telling them my mom wants to see her own medical records, with my help.
to the DIY legal practioners like myself, here's some gold:
(Statutory and Administrative law, especially for things like this, will have very little variation on the state level, and most of it copy/pasted from the federal laws, in this case, Codified Regulations)
HIPAA, protected information, down to the nitty gritty:
https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-G/part-482
https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-C/part-164/subpart-E/section-164.524
Ok THAT is interesting. This forum is , as we all know, very lucky to have you, and many others of course.
I have been trying to take your advice in a different thread about having specific questions, and learning their jargon.
Example:
The last time I visited, the nurse just didnt know what to say and offered to get the attending (nurse practioner in this case). Once she was in the room, I recall her defending anti-psychotics:
"It's really a shame that they earned such a name. People automatically have negative associations thinking, well the person being treated is now called 'psychotic'."
And I replied: "Oh yes that makes perfect sense. So in that case, seratonin, dopamine, norepinephrine, ANtagonists" really stressing that first syllable, the last thing I want is to be 'that guy' that doesn't know his Agonists from his Antagonists, ugh.
Anyway I told her never would I just write off an entire class of a medication by calling it 'good or bad'. That would just be way too primitive. I explained that Of course plenty of circumstances absolutely call for the use of such drugs. and I even can empathize with their usage in elder care settings. But just that specifically, since, her mental capacity, is being constantly assessed and re-assessed, and just MAYYYYYBE, ties in to matters perHAPS even outside the scope of medical care....that maybe it would be a good idea to not use them.
Well surprise surprise, she then tells me that this is exactly why they have been adjusting the dosage, and weening her off of them. The expression on her face was like "leave me alone, i have to go, stop interrogating me" hah well I thanked her for informing of such a wonderful developmnt, and i meant it!
So it's a doctor and 2 nurse practioners that are the 'attending body'.
Well, i know the hospital us part of a network, and there is: a 'president'.
I know their name. The advocate told me they would call me back, it's about 2pm, and not a squeek. My plan was
1. advocate
2. office of elderly affairs(for the state) - ombudsman
then if that's not enough
3, state complaint process for the office of professional licensure. They have specific forms and options for doctors, and then for nurses, and then for other sorts of healthcare staff. And unlike the hospital's advocate, they REQUIRE that everything be in writing, where as the hospital advocate, REQUIRES everything to be done via voice over on the phone(by not offering any other option)
4. Next indeed, would be medical malpractice attorneys. I didn't even think of dropping the casual threat of such a thing. It is a very large hospital, and , ugh don't even get me started, but is supposed to be kind of a leader in the field, and publishes a lot of research and people just assume it's the best hospital. It's not.
I'm just not sure who to express my (true) intentions to, about persuing a malpractice, misconduct lawsuit. I have no doubt that if and when I find an attorney able and willing to help, that it would be a landmark case that they would do pro bono(and of course I know just how to slap that comment in) Just not sure who would care? I guess the attending Doctor, with max staff in the background listening, just might.
Many thanks!
That sentence that you quote, has already been stated to me on numerous occasions. The issue is that, I can hardly bring a case to the probate court to petition for Guardianship, when I don't even know the details of what is happening at the hospital. I do however know that, once I get a hold of those records, it will be 100 times easier for me to convince a court of this, for reasons that would deserve a separate post. Nothing particularly new for this forum, but kind of extreme.
The wording of the Durable POA is pretty good, but again, in my strate, a POA can never extend to medical decisions, nor would it ever cover HIPAA privacy, and certainly not empower me with fiduciary decision making powers for anything to do with her health care. All of that is solely covered by the standard Healthcare Proxy form(in most states called Medical POA).
I've also filed a complaint with the hospital's office of the Advocate, only intending to just get help with gaining access to her chart.
I am her son, there is no other immediate kin alive today. The closest after me is her first cousin, my Aunt..once rremoved? I just call her my Aunt. It really gets under my skin that this very same Aunt, when she has tried to ask any questions about my mother, they told her 'Ask her son'.
They're treating me as caregiver when convenient, or as stranger when convenient. Some of you might already have a hunch as to why they might be doing that. Thank you for the feedback! I will look into this more either way, and finally find a probate attorney to talk to.
You can also break down the problems and suggest solutions, adding that those have been rejected, and querying what it does in fact take to get this situation resolved, short of your removing her to another hospital (even if you don't plan to).
I had to do that once when my father was hospitalized and wasn't getting nurse response on the floor for an emergency situation. But I called his treating physician, spoke with one of his office staff, and asked for guidance, with the anticipated result that she said she would intervene.
I also said that my father was ready to leave AMA, that I had significant medmal experience and would be considering contacting one of the firms for which I worked if Dad didn't get immediate relief (which he needed; he was in agonizing pain, but the floor staff weren't listening.)
It worked; someone from another floor came up shortly and resolved the situation.