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.
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.
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).
^ 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.
^ 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.
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.
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.
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.
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.
I appreciate your explaining your family situation. I wish you the best. I wish I could say that I have found surefire answers that make it possible for one to be effective in the moment in advocating for one's family member's rights as a patient. As the OP said on this thread, if it is this difficult for nurses to do this, how hard must it be for lay people. You used the term bureaucracy and I think that is apt.
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.
As long as the POA isn't activated, we have to respect the patients wishes, even if we think they are making the wrong decision.
Once the doc comes in if we ask the patient again, or word it differently, they may agree to have visitors, or allow us to share information. Give us a bit of time to sweet talk them, and stress the need for your help when they get home.
I can also tip off the doc that the POA wants to come in and the patient refuses, so they can start the competency assessment. It's not a decision I make, it's what is legally required.
As long as the POA isn't activated, we have to respect the patients wishes, even if we think they are making the wrong decision.
Once the doc comes in if we ask the patient again, or word it differently, they may agree to have visitors, or allow us to share information. Give us a bit of time to sweet talk them, and stress the need for your help when they get home.
I can also tip off the doc that the POA wants to come in and the patient refuses, so they can start the competency assessment. It's not a decision I make, it's what is legally required.
It seems it would be rather unusual for someone to go to the trouble and expense (assuming they involved a lawyer in drawing up their Advance Directives) of appointing a person they presumably trust and have confidence in, to be their Agent under their DPOA for Health Care, and, then, when hospitalized, tell the health care staff that they don't want to receive a visit from this person. I can more easily see a person who is using a DPOA for Health Care form they purchased online or in a store, who has named as their Agent someone who they are not particularly close to, doing this, but even then I would be surprised if this happens very often. Of course, there is always the possibility that the patient was pressured by someone into preparing this document. While it is necessary to safeguard the patient’s rights, I have some thoughts about this situation.
On the subject of a patient refusing visitation from the person that they have selected and designated as their Agent under their DPOA for Health Care; besides the possibility that this is what the patient genuinely wants; the possibility that the patient has become unable to give informed consent; and the possibility that the patient has been coerced into preparing the document and designating an Agent; there are also other possibilities:
It is possible that some kind of interaction has taken place between the patient and the staff that has influenced or prejudiced the patient towards the person whom they have designated as their Agent. It is also possible that the staff have said to the patient something like: “You seem to be doing fine without your wife,” or: “You don’t appear to need your wife to be with you,” and the patient wants to please the health care staff and goes along with this, or the patient can’t find a way at that moment (patients are usually very sick when they are hospitalized) when that comment is made to them, to disagree. This may have then been interpreted by staff as the patient actually not wanting their wife/Agent to visit them.
Also, given that patients usually have to be very sick to be admitted to hospital, it is quite possible that when the patient said or indicated that they didn’t want their Agent to visit them, they were severely stressed both mentally and physically during an acute illness, or were just showing improvement from an acute illnesss, or were under the influence of a medication, or had had a reaction to a medication, or were experiencing toxicity from a medication, or polypharmacy, and it is also possible that they have experienced a stroke, intracranial hemorrhage, acute renal failure, delirium, dehydration, hypoxia, or another condition that could affect their mental status or result in an altered mental status, or that they had undergone a medical procedure that could result in a changed mental status. These conditions may result in an altered mental status, or in the patient's state of mind being different to the way it normally is, and thus affect the patient's behavior. These condition/s and others may not be considered or identified by staff.
This is prob one of the most informative, explanatory, detailed but understandable pieces I have read here on AN. And the fact that it is so sorely needed for all HC providers to be cognizant of is an understatement.
Just a wish that staff in any care delivery capacity were to read this.
Thank you to all the respondents who took the time to provide this valuable information.
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?
Why are you not getting a supervisor? And an Administrator if the Sup also has her head where it doesn't belong?
If that doesn't work, get your lawyer on speed dial.
If that fails, take your Mom home. Just cancel the appointment.
File a c/o with the Chief of Staff for whatever service is involved.
Get the ignorant, incompetent front line people schooled and then fired. They are not comprehending that YOU are caring for and speaking for your Mom LEGALLY.
This is prob one of the most informative, explanatory, detailed but understandable pieces I have read here on AN. And the fact that it is so sorely needed for all HC providers to be cognizant of is an understatement.
Just a wish that staff in any care delivery capacity were to read this.
Thank you to all the respondents who took the time to provide this valuable information.
Wish smish. Action is required.
Yes there is valuable info herein. I just get so frustrated when nurses don't take action.
Susie2310
2,121 Posts
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.