Medical DPOA for my mother, constant refusal to give me information even with the official form

[InSchool4eva20, MSN, RN]

I am medical DPOA for my mother and she has dementia. She see's several physician's and I even though her signed official DPOA form is uploaded and I carry it with us, front desk people don't pass on information or give me access to her information. Luckily, most have the EMR charts I have access to, but I'm constantly floored at the lack of education for this form. My mother can't make decisions, but she will have a wonderful conversation with you she just doesn't retain it.

Last general physician's visit the woman at the front desk told me if my mother didn't consent verbally in front of her I could not go in with her to see her physician due to precautions. My mother pleasantly confused said no and that she had to use the bathroom. When the nurse came to get her I held up my forms and she took them just to tell me later they were in the system already. Then didn't update me and I found out through the EMR they changed her medication and she had no clue.

Does anyone have this experience?

[JKL33]

If you have a properly executed and activated DPOA and they have no valid reasons not to honor it, they should comply. They sound ignorant, rude and uncaring. Find well-respected providers who don't make things difficult for nonsensical reasons. I certainly would not do business with the type of people you describe in your post if I didn't have to. That's ridiculous.

[Make sure you know exactly what kind of DPOA you have, whether it has to be activated (and if so, is it?), etc.]

6 hours ago, InSchool4eva20 said:

Last general physician's visit the woman at the front desk told me if my mother didn't consent verbally in front of her I could not go in with her to see her physician due to precautions.

All the more ridiculous!

[Susie2310]

My experience has been that I have found the office staff to not be knowledgeable on the subject of DPOA's. I had the impression they had received training that didn't include considering whether a patient had a DPOA or whether the person they were talking to could be the patient's designated representative, as they appeared to be following a script.

In the hospital I have experienced similar. I have had to explain to the nurse that I am authorized to receive the patient's PHI and have provided the documents; they took them to copy them apparently not knowing what they were, but their behavior remained unchanged. In the ED a physician's behavior became much more receptive when I was finally able to state that I was the patient's designated representative, and that the documents are in the chart, and that I have a copy of them with me.

I think it is necessary for one to be somewhat assertive and explain to the staff what the documents mean and what rights/powers this gives one.

I would suggest contacting your mother's physician or the practice manager (or both) and explaining the situation. Hopefully he/she will facilitate you in being able to accompany your mother to her appointment, allowing you access to her PHI, and in getting the staff to deal with you as your mother's representative.

[JKL33]

Contacting the physician and practice manager is worth a try; OTOH the physician already apparently didn't find it odd that your mother with dementia was unaccompanied in the exam room, didn't care that she doesn't have the capacity to understand suggestions to change her medication regimen, didn't care to seek your input or inform you of the thought process behind the changes to the regimen, and didn't want the trouble of dealing with whatever other input you may have about you mother's well-being or difficulties.

Staff (such as front desk, MA, etc.) are generally working with whatever limited information and blanket directives their employer gives them. No, they do not have a well-rounded understanding of everything. They also do not have any autonomy whatsoever. In this case they have mistakenly combined their office's recent policy changes about visitors with getting permission to have you in the room. What they said makes zero sense (they need your mother's verbal permission because of restrictions). They get tidbits of information from the practice manager or perhaps occasionally from a provider directly, because they are perceived as not being in charge of anything and don't need to know more than what they are told. Then no one follows up to make sure their interpretations are correct. Like every other problem at the bottom rung, this stems from those further up the ladder.

[Susie2310]

On 6/21/2020 at 4:21 AM, JKL33 said:

OTOH the physician already apparently didn't find it odd that your mother with dementia was unaccompanied in the exam room, didn't care that she doesn't have the capacity to understand suggestions to change her medication regimen, didn't care to seek your input or inform you of the thought process behind the changes to the regimen, and didn't want the trouble of dealing with whatever other input you may have about you mother's well-being or difficulties.

I do agree with you that these things don't signal a reason to me to be very confident in how things are done, but I still believe the best place to start is by contacting the practice manager and/or the physician. The OP can decide for herself what she wants to do after that.

[egg122 NP, MSN, APRN]

You might look to shift primary care to a geriatrician. Generally, their offices are well versed in this since it is common. I am surprised that the provider who saw your mother didn't have concerns about changing medications on a diagnosed dementia patient without telling family about it to make sure it was done correctly.

[InSchool4eva20, MSN, RN]

Thank you, I did contact the PCP and she blamed Covid. We did have my mothers hearing checked and found she also is hearing less than 50% in one ear and nothing in the other, but her brain is not translating what she is hearing. So we now have new hearing aids that help slightly and she is given reading material which has helped a lot. I also have the directive in my hand at all times even thought they have it copied and in the chart. I think partially it is the pandemic, but some is lack of education. What is scary is as a nurse this is happening, but what are other people doing? This was at several facilities.

[NRSKarenRN, BSN, RN]

On 7/2/2020 at 6:38 PM, InSchool4eva20 said:

What is scary is as a nurse this is happening, but what are other people doing? This was at several facilities.

Thanks for being a great advocate for your Mother and contacting PCP. Having been in home care 25+ years interacting with hundreds of physician offices, too many are just trying to get through that days work and don't have a "big picture vision" of a patients overall health needs.

Patient centered care is supposed to change that -- still an art being patient advocate + getting info to DPOA despite front desk roadblocks. Only about 20% families I deal with advocate for their loved one like you are doing.

Constant re-education key. I'd definitely discuss, sweetly, with front office staff at next visit to hammer point home.

[canoehead, BSN, RN]

For me, a DPOA means nothing if the patient is competent and requests to do the visit alone. She has the right to do that, or even revoke the DPOA verbally. BUT if you also have a court paper that says she can't make her own decisions, then you become as essential as her right arm.

We get a lot of POA folks that think they are in charge, but the patient still is competent and retains decision making power. Usually the POA comes into effect when they become unable to make their own decision, not before that. So, I still won't give a detailed report to family without the patients permission.

[JKL33]

On 7/18/2020 at 9:48 PM, canoehead said:

For me, a DPOA means nothing if the patient is competent and requests to do the visit alone. She has the right to do that, or even revoke the DPOA verbally. BUT if you also have a court paper that says she can't make her own decisions, then you become as essential as her right arm.

We get a lot of POA folks that think they are in charge, but the patient still is competent and retains decision making power. Usually the POA comes into effect when they become unable to make their own decision, not before that. So, I still won't give a detailed report to family without the patients permission. 

Yes, in my state at least, guardianship and an activated DPOA are not the same thing. Guardianship is granted through courts; DPOA is activated via examination by two independent physicians.

FWIW I am sure there are a lot of family members who don't understand the process of activating the DPOA or that more has to be done after completing what is actually the pre-planning (person/patient has made their wishes known and officially named someone who agrees to fill the role and drawn up the papers and had them signed and all of that). A lot of people (the designees) aren't waving the papers around as a means of wrestling control away and elbowing in where they don't belong....rather, they tend to be responsible families who think they have done what is necessary. Now they're taking care of mom/dad and they know that mom/dad doesn't know what's going on most of the time so they figure it's time to use the papers. That's why they (and the patient) went to the trouble of having them drawn up ahead of time. But then there's the matter of actually activating them. That process seems less clear.

It's a little ridiculous, though, when we (HCPs) see a patient for 10 minutes at a time and as long as they can smile pleasantly and appear to cooperate for a short time we act as if it isn't completely in their best interest to involve those caring for them.

It isn't an easy issue but the unnecessary difficulties are perfectly clear (and unacceptable IMO) the minute it hits home and you (we/one of us) finds ourselves on the other side, caring for a loved one who most certainly does not have the capacity to make important decisions and who in fact doesn't even know what's going on most of the time.

[Susie2310]

On 7/18/2020 at 6:48 PM, canoehead said:

For me, a DPOA means nothing if the patient is competent and requests to do the visit alone. She has the right to do that, or even revoke the DPOA verbally. BUT if you also have a court paper that says she can't make her own decisions, then you become as essential as her right arm.

We get a lot of POA folks that think they are in charge, but the patient still is competent and retains decision making power. Usually the POA comes into effect when they become unable to make their own decision, not before that. So, I still won't give a detailed report to family without the patients permission.

As I understand it, and as I see it, in the case of a DPOA for Health Care that becomes valid when the patient is unable to give informed consent or understand the nature of their medical condition/make reasoned decisions about their care, if the DPOA has not been invoked due to these conditions not being present, if the patient clearly expresses the wish for the visit to take place without the person who they have designated as their authorized Agent under their DPOA present, and they are clinically competent to understand their medical problems and make decisions in regard to their care, then they have that right. We should keep in mind however that during the course of a hospitalization a patient can fluctuate between being able to properly give informed consent and not; the effect of medications and treatment alone can have this effect, let alone the patient's actual medical condition, which can vary between competency and delirium in one hospitalization.

As JKL33 mentioned, I too have seen physicians, health care employees, and managers, who are meeting the patient for the first time for 10 minutes or less and have no knowledge of the patient's medical problems, medical history, or that the patient's family member is their Agent under their DPOA for Health Care, or of the relationship between the patient and their Agent, and even when they are told that the patient's family member is their Agent under their DPOA for Health Care, literally dismiss the Agent/spouse because the patient, often not wanting to cause any difficulties, said something like: "Yes, I'm fine by myself" or "No, I don't need my wife with me." I find it mind blowing; it almost seems like a power trip for some; as though they subconsciously want to undermine the relationship between the patient and their family member and say triumphantly: "Your husband said he doesn't need you to be with him!," while not having full knowledge (or any knowledge, or just a cursory knowledge) of the patient's medical problems, medical history, or relationship with their family member. Do health care workers do this for convenience, or because they want to be "In Charge," or because they think they need to protect the patient from their own family member who the patient has trusted to be their Agent? Do they just not think about what they are doing? They have a desire to keep the patient's loved one away from them; to deny their presence with the patient. Do they think that the nurse-provider-patient relationship excludes the patient's family member when the patient wants their family member to be involved in their care? This completely ignores/negates the benefit that the patient receives by having their Agent/spouse whom they love, trust, and who very often knows more about the patient's medical history and problems than most of the health care providers involved in their care, present with the patient. This is the person whom the patient very often wants to be involved in their care and who often IS involved in the patient's care on a daily basis, and who is involved in the patient's medical decision making.

Perhaps these are the people you perceive as "thinking they are in charge"; the patient's closest family members or loved ones. Why does the involvement of the patient's family members that they love and want to be involved in their care bother you so much? Patients don't live as hermits or receive health care in a vacuum.

Enormous thought and detail usually goes into drawing up legal documents such as DPOAs' for health care, and the patient and their Agent family member usually take pains for this document to be recognized by health care facilities. However, it seems as though some nurses, physicians, managers, and facilities, either don't care to recognize the importance of these documents and what they mean, or are inexcusably ignorant about them; or because they are pushed for time just skirt past this situation ("I didn't know" is a wonderful excuse), and are similarly oblivious to the fact that the person who is with the patient may be their Agent under their DPOA for health care, or just don't care (which seems foolish to me as this is a legal document that they are obligated to comply with).

The patient's Agent under their DPOA for health care needs to be present with the patient in order to be able to observe the patient's condition and how the patient is responding to their treatment and to be able to advocate for them when necessary; they can't do this or fulfill their legal responsibility if someone on a power trip, or someone for some other reason, often convenience, decides it is best/fine to shut the family member/Agent out from being with the patient.

Being an Agent under a DPOA for health care is an active role, not a passive one. The Agent family member doesn't just sit at home and wait for the facility to phone them and say: " Your husband/wife, is, now, according to our medical judgment, unable to give informed consent, and we need your opinion on what your husband/wife would want us to do."

[JKL33]

2 hours ago, Susie2310 said:

Do health care workers do this for convenience, or because they want to be "In Charge," or because they think they need to protect the patient from their own family member who the patient has trusted to be their Agent? Do they just not think about what they are doing?

A good comment in its entirety...I have a comment on ^this section specifically. I think there is another much more likely possibility: Hospitals/health care facilities 1) take the easiest path and then further simplify it into a blanket directive for staff to follow and 2) seem mostly motivated by financial risk.

1) What is easier for them? To ferret out whether every individual patient/family has properly executed their DPOAs, or to simply tell their staff that patients have rights and they retain them except for very rare situations?

2) What is the bigger financial risk? Well, it isn't too risky for them if an individual family here and there has huge headaches because of a facility's policies or practices with regard to DPOAs. Individuals/families have virtually no way to penalize them in a way that matters to them or to be compensated for unnecessary difficulties that result in the lesser harms and damages that this stupidity causes. On the other hand, if the facility can be found to be regularly violating patient rights, that could be a problem that hits them where it hurts. Facilities have people who know the stats on what kind of a risk something poses and the data will tell them that a family's frustration doesn't pose a real and likely risk to them.

Not trying to exaggerate here - in most of the situations where I've observed coworkers being very confident but wrong with patients about things like what we're discussing here, their confidence (or power trip) was rooted somewhere in inappropriately broad directives of management. Stupid in = stupid out. If you don't want to hire thinkers and then trust them to think critically, then you have no choice but to issue overly-simple directives and let the chips fall where they may. As a staff member, I've lost count of the number of inappropriately broad explanations and directives (lies) I've been told by management about either HIPAA, EMTALA or some other medicolegal issue.

A second major problem I'm personally learning of is that DPOAs are not much akin to guardianship, legally-speaking. I now believe that a lot of families erroneously think that a DPOA is pretty much like guardianship. It follows along with the confusion between competence and capacity. Competency is a matter for the courts, as is guardianship. Capacity and DPOA are both more nebulous and as long as some HCP can say, "Well, she was alert and mostly oriented when I saw her so it would've been a violation of her rights" families are going to struggle. It doesn't matter that mom/dad grandpa/grandma spends most of the day hallucinating about the past.

Families are increasingly trying to avoid LTC at all costs and making huge sacrifices to do so. It is really horrible that they can't be more empowered and that all this malarkey adds even more to their already-enormous burden.