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

Posted

Specializes in Instructor of Nursing and Med/surg nurse. Has 13 years experience.

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?

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!

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.

Edited by Susie2310

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.

Edited by JKL33

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.

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

Specializes in Instructor of Nursing and Med/surg nurse. Has 13 years experience.

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

Specializes in Vents, Telemetry, Home Care, Home infusion. Has 44 years experience.

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

Specializes in ER. Has 30 years experience.

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.

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.

Edited by JKL33

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."

Edited by Susie2310

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.

5 hours ago, JKL33 said:

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.

This is a very thoughtful comment. In regard to your first two paragraphs I agree that this is quite possibly the underlying situation. The act of lumping the patient's closest family member/support person/Agent into the category "Visitors" is an example as I see it. Whether all the possibilities you and I have mentioned exist together in actuality to some degree, or whether some but not all of the possibilities exist in actuality at one time, or whether in an individual situation one of the possibilities predominates in actuality, I believe will vary depending on the motivations, character, knowledge, professionalism, and empathy of the health care worker involved in regard to the patient/their family member (either in general or towards a specific patient/family member).

I can certainly see your third paragraph 2) as a possibility. But as far as individuals having no way to redress this situation in any meaningful way, the patient's Agent can take legal advice if they perceive the patient's rights are being violated. Assuming they are authorized to do so they can obtain the patient's Medical Record and learn the names of the individuals involved in the patient's care, and they can report individual licensed health care workers to their state licensing Boards if they perceive they have violated the patient's rights in the process of providing care, thus making it difficult or impossible for the patient's family member/Agent to act on behalf of the patient in fulfilling their legal responsibilities to the patient. They can contact their State Department of Health and CMS. In the case of CMS, patients who receive Medicare have the right to designate a person as their authorized representative to appeal for them with Medicare when they are hospitalized if they believe the patient is being discharged prematurely; the only way this person can properly advocate for them is by being present with them. They can contact the ADA and the Office for Civil Rights.

You make a valid point in your fourth paragraph.

In regard to your fifth paragraph, I agree with you that I think some family members are not properly aware of the differences between guardianship and DPOA for Health Care. However, depending on the law of one's state the patient can authorize an individual to receive their HIPAA protected information; in my state the patient can authorize an individual to be permitted to advocate for their health care needs on their behalf with their health care providers/health care facilities regardless of whether or not the patient retains legal capacity. I think being prepared on the part of the patient's Agent is very important; this is often very difficult in the spur of the moment.

In regard to competency (I am not a lawyer) my understanding is that patients are considered to be legally competent unless a Court has determined otherwise; but that the determination of competency for health care decision making purposes is made by the physician, I.e. the physician determines whether the patient is capable of understanding their medical condition and of making informed decisions about their care.

I agree with your last paragraph, but separate from or in addition to the desire to avoid LTC for the patient; the patient's family member very often simply cares deeply for the patient and wishes to help them in maintaining their autonomy and health to the greatest degree possible. I don't think that the patient's family member actually lacks power, but that they may need to take legal advice on how best to be effective in these types of situations.

Edited by Susie2310

On 7/20/2020 at 9:17 AM, Susie2310 said:

This is a very thoughtful comment. In regard to your first two paragraphs I agree that this is quite possibly the underlying situation. The act of lumping the patient's closest family member/support person/Agent into the category "Visitors" is an example as I see it. Whether all the possibilities you and I have mentioned exist together in actuality to some degree, or whether some but not all of the possibilities exist in actuality at one time, or whether in an individual situation one of the possibilities predominates in actuality, I believe will vary depending on the motivations, character, knowledge, professionalism, and empathy of the health care worker involved in regard to the patient/their family member (either in general or towards a specific patient/family member).

I can certainly see your third paragraph 2) as a possibility. But as far as individuals having no way to redress this situation in any meaningful way, the patient's Agent can take legal advice if they perceive the patient's rights are being violated. Assuming they are authorized to do so they can obtain the patient's Medical Record and learn the names of the individuals involved in the patient's care, and they can report individual licensed health care workers to their state licensing Boards if they perceive they have violated the patient's rights in the process of providing care, thus making it difficult or impossible for the patient's family member/Agent to act on behalf of the patient in fulfilling their legal responsibilities to the patient. They can contact their State Department of Health and CMS. In the case of CMS, patients who receive Medicare have the right to designate a person as their authorized representative to appeal for them with Medicare when they are hospitalized if they believe the patient is being discharged prematurely; the only way this person can properly advocate for them is by being present with them. They can contact the ADA and the Office for Civil Rights.

You make a valid point in your fourth paragraph.

In regard to your fifth paragraph, I agree with you that I think some family members are not properly aware of the differences between guardianship and DPOA for Health Care. However, different states have different laws in regard to DPOAs' for Health Care. In my state, to my knowledge, the DPOA for Health Care can, if the patient designates this, take effect while the patient is still able to give informed consent. In my view, this is another reason why it is so important that health care workers/facilities are aware of the specific authority the DPOA for Health Care grants, or one may wrongly assume that the patient's Agent is over-stepping the bounds of their decision making authority, and wrongly prevent the patient's Agent from acting in accordance with the patient's wishes. Also, depending on state law, the patient can authorize an individual to receive their HIPAA protected information. In my state the patient can authorize an individual to be permitted to advocate for their health care needs on their behalf with their health care providers/health care facilities regardless of whether or not the patient retains legal capacity. I think being prepared on the part of the patient's Agent is very important; this is often very difficult in the spur of the moment.

In regard to competency (I am not a lawyer) my understanding is that patients are considered to be legally competent unless a Court has determined otherwise; but that the determination of competency for health care decision making purposes is made by the physician, I.e. the physician determines whether the patient is capable of understanding their medical condition and of making informed decisions about their care.

I agree with your last paragraph, but separate from or in addition to the desire to avoid LTC for the patient; the patient's family member very often simply cares deeply for the patient and wishes to help them in maintaining their autonomy and health to the greatest degree possible. I don't think that the patient's family member actually lacks power, but that they may need to take legal advice on how best to be effective in these types of situations.

I added more information to my post above and made a few other changes (in italics).

Edited by Susie2310

^ Excellent comment and good information for resources. Sorry I couldn't respond sooner.

Here are some additional thoughts in response:

9 hours ago, Susie2310 said:

But as far as individuals having no way to redress this situation in any meaningful way, the patient's Agent can take legal advice if they perceive the patient's rights are being violated.

Definitely. Although sadly I think it sounds more empowering in theory than it is in practice oftentimes. Generally if one doesn't have a cause of action with a potential for significant financial redress, it may be difficult to afford legal fees for much more than a basic consultation or even get anyone to care too much.

Reporting to regulatory bodies (CMS, etc) is a decent option but is not an immediate "make this stop right now" fix for a struggling family and will likely not provide any retribution for financial expenses and physical/emotional exhaustion that easily occurs due to lay persons trying to navigate the bureaucracy and red tape of seeking appropriate care for their loved one.

9 hours ago, Susie2310 said:

Assuming they are authorized to do so they can obtain the patient's Medical Record and learn the names of the individuals involved in the patient's care, and they can report individual licensed health care workers to their state licensing Boards if they perceive they have violated the patient's rights in the process of providing care,

Because of my opinions and best beliefs about the underlying causes of the problem, I could never do this in good conscience. If employees (whether physicians/providers or RNs) had more in-fact, day-to-day autonomy and authority, I would feel differently. As I'm sure you know from my previous comments 🙂, my biggest desire would be to hold those at the top accountable for what they push down the line. Those at the end of the line are in a position not unlike the patient/family, trying to care for self and loved ones (put food on the table, etc.) while being constantly pressured and messed with by those higher up. Constant meddling to the point where, no, they are not truly free to simply "take the best care of the patient that [you] can" or "do what's right for the patient" as an individual with unique needs. Short of purposeful malice, I would never seek the punishment of individual licensees while business people play games knowing it is usually only going to result in a hand-slap, if anything at all. That whole reality is highly offensive to me.

[I have had a loved one actually harmed (requiring escalated care) by an unlicensed, entry-level employee who (in retrospect) was clearly never given appropriate training. I went into business mode and handled it to my satisfaction with the person in charge, including financial redress. When their "solution" initially was to terminate the employee, I expressed my dissatisfaction and advocated on the employee's behalf. This story is neither here nor there, I just want you to know I believe strongly in the principles I am advocating and have reacted accordingly even when navigating the emotions of being personally affected. 🙂]

10 hours ago, Susie2310 said:

They can contact their State Department of Health and CMS. In the case of CMS, patients who receive Medicare have the right to designate a person as their authorized representative to appeal for them with Medicare when they are hospitalized if they believe the patient is being discharged prematurely; the only way this person can properly advocate for them is by being present with them. They can contact the ADA and the Office for Civil Rights.

Good information.

10 hours ago, Susie2310 said:

However, different states have different laws in regard to DPOAs' for Health Care. In my state, to my knowledge, the DPOA for Health Care can, if the patient designates this, take effect while the patient is still able to give informed consent. In my view, this is another reason why it is so important that health care workers/facilities are aware of the specific authority the DPOA for Health Care grants, or one may wrongly assume that the patient's Agent is over-stepping the bounds of their decision making authority, and wrongly prevent the patient's Agent from acting in accordance with the patient's wishes. Also, depending on state law, the patient can authorize an individual to receive their HIPAA protected information. In my state the patient can authorize an individual to be permitted to advocate for their health care needs on their behalf with their health care providers/health care facilities regardless of whether or not the patient retains legal capacity. I think being prepared on the part of the patient's Agent is very important; this is often very difficult in the spur of the moment.

Re DPOA. I have recently had personal reason to look into this more. In my state, DPOA is set up while the patient has the capacity to choose the designee and make their care wishes known. The "durable" part means that the document remains in effect after the individual (patient) has become incapacitated/unable to make decisions. However, in my state, the DPOA is not "activated" until some future time when two independent physicians have examined the patient and concluded that the patient no longer has the capacity to make most or all of their health care decisions and therefore the DPOA should become active. This process makes sense, as a DPOA would be arranged while a patient does have capacity, and therefore it wouldn't make sense for it to immediately be active. However, sensible as it may be, I don't think many families understand it and believe that whenever they feel that the patient can't make decisions they just get out the papers and use them as their authority to make decisions. It just doesn't work that way in my state and a lot of the pushback families get from HCPs is because they actually haven't enacted the DPOA entirely. Everything is ready, it just isn't yet formally activated.

10 hours ago, Susie2310 said:

In regard to competency (I am not a lawyer) my understanding is that patients are considerED to be legally competent unless a Court has determined otherwise; but that the determination of competency for health care decision making purposes is made by the physician, I.e. the physician determines whether the patient is capable of understanding their medical condition and of making informed decisions about their care.

Competency is through the courts, that is my understanding, too. In my state, using and activating a DPOA doesn't involve the legal process of having someone declared incompetent through a court, but rather it is activated as I've already described above, which does involve two physicians.

Another avenue is that a family could pursue guardianship, which would encompass medical decision-making, etc., but it is a much more rigorous and expensive court process. My understanding is that DPOA purposely avoids all of that in the interest of making it easier for patients and caring families to make a plan while the patient is both competent and has capacity to choose the designee and state their wishes, etc. My understanding (and I could be wrong) is that guardianship may need to be pursued in the instance that a patient is permanently/globally incapacitated and there was no DPOA for healthcare/finances, etc.

10 hours ago, Susie2310 said:

I agree with your last paragraph, but separate from or in addition to the desire to avoid LTC for the patient; the patient's family member very often simply cares deeply for the patient and wishes to help them in maintaining their autonomy and health to the greatest degree possible.

Absolutely.

On 7/20/2020 at 12:17 PM, Susie2310 said:

I don't think that the patient's family member actually lacks power, but that they may need to take legal advice on how best to be effective in these types of situations.

You are probably right about that. Information is needed and will lead to empowerment. I do think that if families are not very sure of their (and the patient's) rights then the situation (laws, bureaucracy, policies, inappropriate directives, misinformation from staff) quickly becomes overwhelming enough to pretty much stymie them, and it is then difficult to quickly (or in a timely manner) gain the concern and cooperation of healthcare business persons (and their staffs) without a level of social resources and sophistication and knowledge that a lot of people simply don't have.

Appreciate the interesting discussion.

1 hour ago, JKL33 said:

^ Excellent comment and good information for resources. Sorry I couldn't respond sooner.

Here are some additional thoughts in response:

Definitely. Although sadly I think it sounds more empowering in theory than it is in practice oftentimes. Generally if one doesn't have a cause of action with a potential for significant financial redress, it may be difficult to afford legal fees for much more than a basic consultation or even get anyone to care too much.

Reporting to regulatory bodies (CMS, etc) is a decent option but is not an immediate "make this stop right now" fix for a struggling family and will likely not provide any retribution for financial expenses and physical/emotional exhaustion that easily occurs due to lay persons trying to navigate the bureaucracy and red tape of seeking appropriate care for their loved one.

Because of my opinions and best beliefs about the underlying causes of the problem, I could never do this in good conscience. If employees (whether physicians/providers or RNs) had more in-fact, day-to-day autonomy and authority, I would feel differently. As I'm sure you know from my previous comments 🙂, my biggest desire would be to hold those at the top accountable for what they push down the line. Those at the end of the line are in a position not unlike the patient/family, trying to care for self and loved ones (put food on the table, etc.) while being constantly pressured and messed with by those higher up. Constant meddling to the point where, no, they are not truly free to simply "take the best care of the patient that [you] can" or "do what's right for the patient" as an individual with unique needs. Short of purposeful malice, I would never seek the punishment of individual licensees while business people play games knowing it is usually only going to result in a hand-slap, if anything at all. That whole reality is highly offensive to me.

[I have had a loved one actually harmed (requiring escalated care) by an unlicensed, entry-level employee who (in retrospect) was clearly never given appropriate training. I went into business mode and handled it to my satisfaction with the person in charge, including financial redress. When their "solution" initially was to terminate the employee, I expressed my dissatisfaction and advocated on the employee's behalf. This story is neither here nor there, I just want you to know I believe strongly in the principles I am advocating and have reacted accordingly even when navigating the emotions of being personally affected. 🙂]

Good information.

Re DPOA. I have recently had personal reason to look into this more. In my state, DPOA is set up while the patient has the capacity to choose the designee and make their care wishes known. The "durable" part means that the document remains in effect after the individual (patient) has become incapacitated/unable to make decisions. However, in my state, the DPOA is not "activated" until some future time when two independent physicians have examined the patient and concluded that the patient no longer has the capacity to make most or all of their health care decisions and therefore the DPOA should become active. This process makes sense, as a DPOA would be arranged while a patient does have capacity, and therefore it wouldn't make sense for it to immediately be active. However, sensible as it may be, I don't think many families understand it and believe that whenever they feel that the patient can't make decisions they just get out the papers and use them as their authority to make decisions. It just doesn't work that way in my state and a lot of the pushback families get from HCPs is because they actually haven't enacted the DPOA entirely. Everything is ready, it just isn't yet formally activated.

Competency is through the courts, that is my understanding, too. In my state, using and activating a DPOA doesn't involve the legal process of having someone declared incompetent through a court, but rather it is activated as I've already described above, which does involve two physicians.

Another avenue is that a family could pursue guardianship, which would encompass medical decision-making, etc., but it is a much more rigorous and expensive court process. My understanding is that DPOA purposely avoids all of that in the interest of making it easier for patients and caring families to make a plan while the patient is both competent and has capacity to choose the designee and state their wishes, etc. My understanding (and I could be wrong) is that guardianship may need to be pursued in the instance that a patient is permanently/globally incapacitated and there was no DPOA for healthcare/finances, etc.

Absolutely.

You are probably right about that. Information is needed and will lead to empowerment. I do think that if families are not very sure of their (and the patient's) rights then the situation (laws, bureaucracy, policies, inappropriate directives, misinformation from staff) quickly becomes overwhelming enough to pretty much stymie them, and it is then difficult to quickly (or in a timely manner) gain the concern and cooperation of healthcare business persons (and their staffs) without a level of social resources and sophistication and knowledge that a lot of people simply don't have.

Appreciate the interesting discussion.

Thank you for your thoughtful reply. You raise good questions and make good points. I will reply back once I have had the chance to think more about what you have said.

11 hours ago, JKL33 said:

Here are some additional thoughts in response:

Definitely. Although sadly I think it sounds more empowering in theory than it is in practice oftentimes. Generally if one doesn't have a cause of action with a potential for significant financial redress, it may be difficult to afford legal fees for much more than a basic consultation or even get anyone to care too much.

I think it is wise to consult with a lawyer in drawing up Advance Directives etc. One can consult further if one has specific concerns/questions. I think it is important to be as well informed as possible.

Reporting to regulatory bodies (CMS, etc) is a decent option but is not an immediate "make this stop right now" fix for a struggling family and will likely not provide any retribution for financial expenses and physical/emotional exhaustion that easily occurs due to lay persons trying to navigate the bureaucracy and red tape of seeking appropriate care for their loved one.

I don't know how long this course of action could take to be effective.

However, sensible as it may be, I don't think many families understand it and believe that whenever they feel that the patient can't make decisions they just get out the papers and use them as their authority to make decisions. It just doesn't work that way in my state and a lot of the pushback families get from HCPs is because they actually haven't enacted the DPOA entirely. Everything is ready, it just isn't yet formally activated.

It seems that it would be difficult to know whether family members are acting within the bounds of their authority towards the patient without being privy to very personal and private information that is contained in Advance Directives and other legal documents. I have no knowledge of what types of Advance Directives are used in your state, or what they can contain. Also, these legal documents may require further legal interpretation. In my state I have perused a variety of DPOA for Health Care template forms. Another confounder is that aside from the DPOA for Health Care, patients have the right to choose who they want to be involved in their care even if they haven't prepared an Advance Directive; I.e. they have the right to say "Please share my medical information with my daughter" or "Please tell my daughter my lab results and answer any questions she asks", and they can indicate to their health care providers, for example, by attending their medical appointments with their daughter, that they want their daughter to be included in their medical decision making. Patients can include and involve their family members in their health care as their basic right. Certain types of care situations require that the patient has appointed a representative, such as the example I gave with CMS in regard to perceived premature discharge of Medicare patients. In addition, my understanding is that if the patient has not prepared an Advance Directive, then according to the laws of one's state there are various people who the physician will ask to make decisions on behalf of the patient; I understand there is a specific order in regard to which people will be asked, for example, the patient's spouse would normally be first. So there may be many factors contributing to what at first glance may look like patients' family members overstepping the bounds of their decision making authority in regard to a patient's care, although of course it is possible that the patient's family member/s are doing this. I think we have to be very careful and tread very carefully. You gave the example of patients' family members waving forms that you believe are DPOA for Health Care documents, and of the patients' family members presuming that these documents give them the rights that Guardianship would give them, but do you know for a fact that their documents are DPOA for Health Care documents and do you know what is specified on them? Without knowing this for a fact one is conjecturing.

Another avenue is that a family could pursue guardianship, which would encompass medical decision-making, etc., but it is a much more rigorous and expensive court process. My understanding is that DPOA purposely avoids all of that in the interest of making it easier for patients and caring families to make a plan while the patient is both competent and has capacity to choose the designee and state their wishes, etc. My understanding (and I could be wrong) is that guardianship may need to be pursued in the instance that a patient is permanently/globally incapacitated and there was no DPOA for healthcare/finances, etc.

I think it would be wise to seek legal advice for this type of situation.

I do think that if families are not very sure of their (and the patient's) rights then the situation (laws, bureaucracy, policies, inappropriate directives, misinformation from staff) quickly becomes overwhelming enough to pretty much stymie them, and it is then difficult to quickly (or in a timely manner) gain the concern and cooperation of healthcare business persons (and their staffs) without a level of social resources and sophistication and knowledge that a lot of people simply don't have.

I think this is true, unfortunately. One can try one's best to discuss the problem and seek a solution with the managers/administrators, and one can contact the Patient Advocate, although I personally have experienced not being able to find a Patient Advocate. It may be necessary for one to seek appropriate/qualified legal advice on what one's options are; what one can do in this situation, etc; while this involves legal consultation fees I believe this is money well spent.

I have inserted my thoughts in bold underneath your comments. I do not have any special expertise or knowledge on this subject. I mainly am speaking from what I have learned from my own experience, and from doing basic research. You are a very good critical thinker and ask very intelligent questions and make very good points. I don't think I have much more to offer on this topic, but I have found this a very productive discussion, for which I thank you.

Edited by Susie2310

11 hours ago, Susie2310 said:

You gave the example of patients' family members waving forms that you believe are DPOA for Health Care documents, and of the patients' family members presuming that these documents give them the rights that Guardianship would give them, but do you know for a fact that their documents are DPOA for Health Care documents and do you know what is specified on them?

I should have been more clear. Recently my own family was in a position where they thought that because a DPOA had been responsibly set up by a lawyer ahead of time (before anyone lacked capacity), that when the time came and our elder was not able to make decisions, we should just begin acting on his behalf, on the basis of those papers that he had previously drawn up. Then we found out that they have to be activated. My family didn't literally wave papers in anyone's face, we aren't like that. But I know for a fact that the designees/agents thought they had necessary powers when they actually didn't. They knew that papers had been properly drawn up and that they were in possession of them. They thought that's all that was needed. [Just for further clarification, there was nothing negative about any of it, all members are attempting to lovingly care for another member according to wishes and best interests]. I have to believe that there are other families who have difficulty understanding how to assert the patient's rights, as my own family includes a number of well-educated people and yet it was just unfamiliar territory that wasn't as straightforward as it might seem.

I agree with you that patients have the right to designate someone whom they would like to receive their health care information along with themselves. In some places there is a BIG problem with honoring this. It's almost like it's too much trouble. I think that is unacceptable and have never understood it as a family member or as a nurse caring for patients.

12 hours ago, Susie2310 said:

I think it would be wise to seek legal advice for this type of situation.

Yes, definitely. You are right that a lot of what we are discussing is well worth the money to consult an attorney, even if it has to be scraped together.

You've included a lot of avenues for families to pursue as they try to navigate this. An informative thread.