Saturday, August 7, 2004
My Directive to the Hospital
Following is the directive I wrote and delivered to the hospital while my mother was waiting for pre-admittance ER evaluation. I handed it to the ER nurse assigned to her at 2310, 1 August 2004, previous to her being seen by the ER doctor, ten minutes after I finished writing it (I noted that time with my signature). It solicited amazing results. It should be noted that I came up with the idea of doing this while we were mired in a back-up on I-17 due to an accident 20 miles ahead of us and I was despairing that I was probably, this time, too exhausted, physically, intellectually and emotionally, to perform "magnificently" on my mother's behalf. I wrote the directive, by hand on notebook paper several hours later when we were finally informed that she would most likely be admitted to the hospital. All underlining mimics the original directive and was done to emphasize the underlined words and phrases.
Notes to the nurses, doctors and all staff:
The following notes should be helpful to you in caring for my mother. They apply to problems experienced during her stay for a blood transfusion of 6/8 - 6/10 (or 11, not sure):
After tonight and tomorrow morning I will be commuting back and forth from Prescott daily. You will work with my schedule, not the other way around. I manage our life, including pets, and will be returning home to Prescott every evening, returning here every morning. On August 2nd, after sleeping at [Mesa phone number] and checking in on my mother, I will be returning to Prescott.
You are not to do any procedures without my consent and without a full discussion with me. When I am not here after midday August 2nd I will either be in Prescott at [Prescott phone number] or in transit. You will need to take this into consideration regarding discussing my mother's care with me, scheduling procedures and planning her discharge. You will work with me - not the other way around.
I will keep at least one of you informed of my movements. It will be your responsibility to find me.
I am hoping we will work well together in regards to my mother and her care here. Further, I expect all staff members who need to know the above information to have access to this document, including but not limited to: physicians, nurses, CNAs, techs, dieticians, etc.
I expect my mother to be treated with the respect and honor she deserves. I expect her not to be abused (as she was here in September of 2002) or neglected (as she was, as explained above, in June of 2004) whether I am here or not.
Overall, as you can see in the attached document rating this hospital's performance [a standard rating sheet which is sent to patients after a hospital stay to be filled in and returned] last time, I consider this hospital a good hospital, full of good intentions, with some pesky little problems that need some attention.
I expect every member of this hospital's staff who attends to my mother to receive a copy of this declaration. Might be a good idea if all who see it sign it, too, and keep it on file, as if there are any problems I will first look to determine whether this document or a copy thereof was indeed distributed to all staff attending to my mother.
I think we can work well together to heal my mother - I hope you feel this way, too.
--Gail Rae Hudson
2300 8/01/04
This document had an almost immediate effect. Soon after my mother was transferred from the ER waiting room to a bed in an examination cubicle and seen by the attending ER physician, the nurse arrived with a pill to administer. I asked what it was and was told it was an unbuffered 325 mg aspirin, standard practice medicine in the case of TIAs, actual or assumed, which I understood. I expressed concern, though, about her receiving this because of her iron deficiency anemia. I informed the nurse that her surprisingly good hemoglobin result that night (10.8) was probably due to the mega-doses of iron I'd been feeding her since soon after her transfusion and I was unsure whether her iron deficiency anemia was due to internal gastro-intestinal bleeding since, after much testing, none had been discovered. I knew the doctors were concerned about this, though, and the neurologist had not yet arrived to determine if, in fact, she had suffered a TIA or a series of mini-strokes, thus I was unsure that giving her an unbuffered normal dose of aspirin was appropriate treatment at this time. I indicated that I wished to discuss this with the attending ER and was told he had left. I mentioned that I would not be averse to intravenously administered aspirin and was told "it doesn't exist". I was, however, able to draw the attending nurse into enough discussion that she decided to hold off on administration of the unbuffered normal dose of aspirin until the arrival of the neurologist and her evaluation of my mother.
The neurologist agreed with me, saying that considering my mother's history, which she solicited in detail from me (she was, I think, another physician sent by the gods, as were her partners) and the possibility that what appeared to be mini-stroking might also be caused by her extremely low sodium and chloride levels, the aspirin should not be administered until it was determined that my mother's hemoglobin was stable and she was, indeed, suffering classic TIA or mini-stroking, thus indicating that past internal bleeding or not, her anemia would likely not be affected by taking unbuffered aspirin in normal doses.
The second effect of my directive took place the next day. Early in the morning I was met in my mother's room by the Clinical Manager of my mother's floor and a woman whose cards weren't ready but who I believe was pretty much head of PR at the hospital and whose job it is to be primary negotiator between patients/caregivers and the hospital when "situations" occur.
The first words out of their mouths were that my letter was "excellent" and the entire directive should apply to "every patient" in the hospital. We met standing, for a good 45 minutes, discussing the directive and my complaints in detail, with frequent reference to the directive. Aside from me being given a chance to correct a few clerical errors I'd discovered when I reread my copy of the document (relating to dates and miswritten words), each of my complaints was addressed specifically as follows:
When I retrieved the paperwork necessary to establish my legal right to oversee my mother's care I discovered, to my surprise, that while I have Durable Power of Attorney I did not have Medical Power of Attorney, which I'd thought I had. No problem. The hospital keeps notaries and forms for this contingency. I was immediately attended by an extremely capable notary who took care to determine whether my mother was mentally capable of granting me Medical Power of Attorney over her. She was, but I consider it important that this woman would have questioned the granting if my mother seemed somehow unable to understand what was going on. I was also able to establish Mental Health Care Power of Attorney (which I didn't know existed) and my mother was able to establish Advance Directives to be used in the event of paramedic involvement in which a choice had to be made, pre-hospital, as to whether to revive her from terminal heart or breath stoppage. Both of us were also informed of and invited to participate in a program which allows for the donation of one's body to science at death, a program which we will, indeed activate and I will discuss in a later post with web links. I might add, all of these services were provided as a part of normal hospital procedure. No out of pocket fees were involved.
I was surprised throughout my mother's stay how much of a difference asserting oneself made in my mother's care and my ability to negotiate on her behalf. I was careful to try not to make a pest of myself but I know I kept the staff on their toes. I feel no need to apologize for this. This, I believe, was as it should be. If everyone, patient or caregiver, who comes into contact with hospital staff demanded the level of care and respect I demanded hospitals would have to respond with a higher quantity of better prepared, more responsive staff and the reverberation would have to be translated throughout all areas of the non-alternative medical-industrial complex including insurance, drug and research companies and medical administrative organizations.
Before 24 hours had elapsed I was readily identified by all the people involved directly and peripherally in my mother's care. Apparently my reputation spread, as people who were not involved knew who I was, probably because of the description of my unusual arrangement of earrings, attached to a cautionary verbal note to "watch out for [me]".
I was my usual ebullient, off-the-cuff self, perpetually interested in the others around me, friendly and available, stern when necessary (which wasn't often), willing to help and, as well, made some very interesting acquaintances who I will not forget and who I believe will serve my mother well the next time we are there.
I was very, very pleased with the level of care provided this time. As I told the PR representative on my way out of the hospital to meet my mother at the SNF, the only complaint I had this time was about the furniture and it was not on behalf of my mother but myself. We both laughed, knowing that this isn't a complaint which is likely to be addressed, except, perhaps, in the storied manner of the movie Calendar Girls.
As of 2055, 8/20/06, I removed a long amendation to this post, the contents of long comment I left addressed to "ER Nurse". At this time, it is the last comment attached to this post. I had added this amendation because on 8/18/06, when I published the comment, I was having trouble posting comments, as, apparently, were others. However, my comment published quickly and well. Since it is a long one, its repetition here seems ridiculous. Thus, I've deleted it. You can find the comment to which I'm referring below in the comments section.
Notes to the nurses, doctors and all staff:
The following notes should be helpful to you in caring for my mother. They apply to problems experienced during her stay for a blood transfusion of 6/8 - 6/10 (or 11, not sure):
- She left the hospital with skin tears from the tape used to hold her saline drip in her arm. The skin tears began to develop the day before she was released and were brought to the staff's attention the night before she was released but were not attended to until I brought them to the attention of the day shift the day she was released.
- She is a type 2 diabetic. She was put on a normal diet the last time she was here and remained on it for 24 hours until her blood sugar shot up to 368.
- She left the hospital so dehydrated last time that her calf skin folded about a half inch and stuck. This is severe tenting. The doctor said it was due to blood loss but:
- She was on a saline drip.
- She has never been this dehydrated, although doctors have been assuming internal bleeding for 2 years. I have no trouble keeping her more hydrated than this without a saline drip.
- She suffered severe bruising on her fingers from blood glucose testing. This isn't necessary! I test her 3 times a day, sometimes more. She doesn't get bruised. She doesn't need to get bruised!
After tonight and tomorrow morning I will be commuting back and forth from Prescott daily. You will work with my schedule, not the other way around. I manage our life, including pets, and will be returning home to Prescott every evening, returning here every morning. On August 2nd, after sleeping at [Mesa phone number] and checking in on my mother, I will be returning to Prescott.
You are not to do any procedures without my consent and without a full discussion with me. When I am not here after midday August 2nd I will either be in Prescott at [Prescott phone number] or in transit. You will need to take this into consideration regarding discussing my mother's care with me, scheduling procedures and planning her discharge. You will work with me - not the other way around.
I will keep at least one of you informed of my movements. It will be your responsibility to find me.
I am hoping we will work well together in regards to my mother and her care here. Further, I expect all staff members who need to know the above information to have access to this document, including but not limited to: physicians, nurses, CNAs, techs, dieticians, etc.
I expect my mother to be treated with the respect and honor she deserves. I expect her not to be abused (as she was here in September of 2002) or neglected (as she was, as explained above, in June of 2004) whether I am here or not.
Overall, as you can see in the attached document rating this hospital's performance [a standard rating sheet which is sent to patients after a hospital stay to be filled in and returned] last time, I consider this hospital a good hospital, full of good intentions, with some pesky little problems that need some attention.
I expect every member of this hospital's staff who attends to my mother to receive a copy of this declaration. Might be a good idea if all who see it sign it, too, and keep it on file, as if there are any problems I will first look to determine whether this document or a copy thereof was indeed distributed to all staff attending to my mother.
I think we can work well together to heal my mother - I hope you feel this way, too.
--Gail Rae Hudson
2300 8/01/04
This document had an almost immediate effect. Soon after my mother was transferred from the ER waiting room to a bed in an examination cubicle and seen by the attending ER physician, the nurse arrived with a pill to administer. I asked what it was and was told it was an unbuffered 325 mg aspirin, standard practice medicine in the case of TIAs, actual or assumed, which I understood. I expressed concern, though, about her receiving this because of her iron deficiency anemia. I informed the nurse that her surprisingly good hemoglobin result that night (10.8) was probably due to the mega-doses of iron I'd been feeding her since soon after her transfusion and I was unsure whether her iron deficiency anemia was due to internal gastro-intestinal bleeding since, after much testing, none had been discovered. I knew the doctors were concerned about this, though, and the neurologist had not yet arrived to determine if, in fact, she had suffered a TIA or a series of mini-strokes, thus I was unsure that giving her an unbuffered normal dose of aspirin was appropriate treatment at this time. I indicated that I wished to discuss this with the attending ER and was told he had left. I mentioned that I would not be averse to intravenously administered aspirin and was told "it doesn't exist". I was, however, able to draw the attending nurse into enough discussion that she decided to hold off on administration of the unbuffered normal dose of aspirin until the arrival of the neurologist and her evaluation of my mother.
The neurologist agreed with me, saying that considering my mother's history, which she solicited in detail from me (she was, I think, another physician sent by the gods, as were her partners) and the possibility that what appeared to be mini-stroking might also be caused by her extremely low sodium and chloride levels, the aspirin should not be administered until it was determined that my mother's hemoglobin was stable and she was, indeed, suffering classic TIA or mini-stroking, thus indicating that past internal bleeding or not, her anemia would likely not be affected by taking unbuffered aspirin in normal doses.
The second effect of my directive took place the next day. Early in the morning I was met in my mother's room by the Clinical Manager of my mother's floor and a woman whose cards weren't ready but who I believe was pretty much head of PR at the hospital and whose job it is to be primary negotiator between patients/caregivers and the hospital when "situations" occur.
The first words out of their mouths were that my letter was "excellent" and the entire directive should apply to "every patient" in the hospital. We met standing, for a good 45 minutes, discussing the directive and my complaints in detail, with frequent reference to the directive. Aside from me being given a chance to correct a few clerical errors I'd discovered when I reread my copy of the document (relating to dates and miswritten words), each of my complaints was addressed specifically as follows:
- Skin Tears: Unacceptable, yes, they agreed, but not always avoidable, although more care would be taken with my mother's skin, which the RN noted through on-the-spot examination, was extremely delicate. Alternatives such as Coban would be used with my mother when possible. When not possible, tears, if they should occur, would be treated immediately and observed and tended for prompt healing.
I also related the incident which happened on the morning of my mother's discharge when, after bringing the tearing to a nurse's attention after the same nurse had been alerted to it by my mother's doctor the night previous, the nurse, in an exasperated voice, while looking at the tearing, appeared baffled as to how to treat it and demanded of me how I treat my mother's skin tearing. I replied, "My mother's skin doesn't tear around me." Both of the hospital representatives who were responding to my directive were taken aback at this nurse's response, which, I might add, I'd documented in the survey form. - Meal Ordering: Would definitely be correct this time around. In fact, with each meal that was delivered the dietician made a special effort to announce that the meal was a "special diabetic meal ordered by your doctor".
- Dehydration: I already know this is a tricky issue. As it turns out I had apparently been over-hydrating my mother during the few days prior to her entry into the hospital. My techniques and standards for determining dehydration in my mother had already been solicited and reviewed by two neurologists and corrected, where necessary. The problem was that I have been over-ambitious in identifying and combating skin tenting in my mother
In my defense, I was using standards explained and shown to me by one of her Mesa PCPs through the clinic that I trust and I've been following them for four years. They have only recently caused a problem. I did not, however, explain my defense to the hospital advocates, as it seemed unnecessary since I was getting new, up-to-date instruction on identifying dehydration in the elderly.
As well, because of my ambitious over-hydration, which caused a significant and potentially dangerous and possibly immediately affective drop in her sodium and chloride levels, her hydration was ordered to be closely managed in order to raise these levels, which, in fact, were back to normal in less than two days. My mother's quick recovery of the rudiments of her natural strength attest to the probability that her "TIA" was actually a dangerously low sodium/chloride episode. The probable reason for her weakness manifesting primarily on her right side is because this side is already weak due to the years' ago mini-stroke. - Finger Bruising: Was explained to be due to the hospital equipment used to take blood glucose readings versus standard home testing equipment, as well as the techniques used to pump adequate blood into fingers withered with age. This discussion lasted a while and came to a compromised end. I continued to argue that perhaps their equipment should be changed and perhaps their pumping efforts should more mirror mine and be done before sticking rather than after sticking (which is the hospital's practice).
Interesting sidebar: One of the CNAs who regularly took my mother's blood glucose is also a type 2 diabetic and mentioned that she took her own readings three times a day or more. As she worked on my mother I noticed that her fingers showed no evidence of bruising, even as my mother's fingers blossomed under her touch. I'm now thinking that this problem is completely avoidable in hospitals by two means: The first being the use of better equipment; the second being taking a few more seconds to be careful when testing, despite the fact that the CNAs who collect the daily stats are bombarded with several patients whose stats must be taken on a timely basis. Perhaps more CNAs are needed. - My Time Is Not At Your Disposal: When we got to this section of my directive I took the time to explain my circumstances in regards to my mother's and my life. I also explained that in June during her stay for her blood transfusion I was literally driven temporarily insane due to the doctors' expectations that I would be at their disposal. This temporary insanity, I explained, caused me to be able to oversee my mother's care with a lowered level of effectiveness. While I believe I did a good job overall, I was reduced, finally, to incoherent babbling in some cases. I was determined, I explained, that this would not happen to me again. I needed to be in as high form as possible to negotiate the medical complex on my mother's behalf. To this end, I expected to have my schedule and my availability respected. Both representatives agreed that this was reasonable and assured me that, whether I was able to be present during examinations or not, if the doctors who conducted the examinations were unavailable to me when I was available they would be paged to speak with me.
As it turned out, only one doctor was unavailable but I knew how to get ahold of him and his determinations were reviewed for me by the charge nurse that day in such detail that I found it unnecessary to contact him.
- Wearing an identification badge, in which I secretly took pleasure in since this would alert staff to the need to handle my mother and me with care and respect;
- Participating in as many or as few personal care procedures for the patient in question. I chose, I imagine, a medium number since I knew I would not be constantly available and frankly expressed that there were certain duties, like overseeing bowel evacuation, from which I wanted a rest;
- Receiving discounts at the hospital cafeteria and gift shop.
When I retrieved the paperwork necessary to establish my legal right to oversee my mother's care I discovered, to my surprise, that while I have Durable Power of Attorney I did not have Medical Power of Attorney, which I'd thought I had. No problem. The hospital keeps notaries and forms for this contingency. I was immediately attended by an extremely capable notary who took care to determine whether my mother was mentally capable of granting me Medical Power of Attorney over her. She was, but I consider it important that this woman would have questioned the granting if my mother seemed somehow unable to understand what was going on. I was also able to establish Mental Health Care Power of Attorney (which I didn't know existed) and my mother was able to establish Advance Directives to be used in the event of paramedic involvement in which a choice had to be made, pre-hospital, as to whether to revive her from terminal heart or breath stoppage. Both of us were also informed of and invited to participate in a program which allows for the donation of one's body to science at death, a program which we will, indeed activate and I will discuss in a later post with web links. I might add, all of these services were provided as a part of normal hospital procedure. No out of pocket fees were involved.
I was surprised throughout my mother's stay how much of a difference asserting oneself made in my mother's care and my ability to negotiate on her behalf. I was careful to try not to make a pest of myself but I know I kept the staff on their toes. I feel no need to apologize for this. This, I believe, was as it should be. If everyone, patient or caregiver, who comes into contact with hospital staff demanded the level of care and respect I demanded hospitals would have to respond with a higher quantity of better prepared, more responsive staff and the reverberation would have to be translated throughout all areas of the non-alternative medical-industrial complex including insurance, drug and research companies and medical administrative organizations.
Before 24 hours had elapsed I was readily identified by all the people involved directly and peripherally in my mother's care. Apparently my reputation spread, as people who were not involved knew who I was, probably because of the description of my unusual arrangement of earrings, attached to a cautionary verbal note to "watch out for [me]".
I was my usual ebullient, off-the-cuff self, perpetually interested in the others around me, friendly and available, stern when necessary (which wasn't often), willing to help and, as well, made some very interesting acquaintances who I will not forget and who I believe will serve my mother well the next time we are there.
I was very, very pleased with the level of care provided this time. As I told the PR representative on my way out of the hospital to meet my mother at the SNF, the only complaint I had this time was about the furniture and it was not on behalf of my mother but myself. We both laughed, knowing that this isn't a complaint which is likely to be addressed, except, perhaps, in the storied manner of the movie Calendar Girls.
As of 2055, 8/20/06, I removed a long amendation to this post, the contents of long comment I left addressed to "ER Nurse". At this time, it is the last comment attached to this post. I had added this amendation because on 8/18/06, when I published the comment, I was having trouble posting comments, as, apparently, were others. However, my comment published quickly and well. Since it is a long one, its repetition here seems ridiculous. Thus, I've deleted it. You can find the comment to which I'm referring below in the comments section.
Comments:
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posted by Amanda M: Tue Aug 15, 10:59:00 PM MST
Wow. Sounds like the letter was very, very effective. I am sending this to family members, because the only way that we've EVER been able to be that effective was by tag-team 24-hour care, which is exhausting. Effective, but exhausting. And not for the long term.
Thank you, thank you for this post.
Wow. Sounds like the letter was very, very effective. I am sending this to family members, because the only way that we've EVER been able to be that effective was by tag-team 24-hour care, which is exhausting. Effective, but exhausting. And not for the long term.
Thank you, thank you for this post.
posted by Anonymous: Wed Aug 16, 05:14:00 AM MST
thanks for confirming my decision to leave medicine.
thanks for confirming my decision to leave medicine.
posted by ER Nurse: Wed Aug 16, 06:09:00 AM MST
You would have lost any credibility with me when you demanded IV aspirin, and it's beyond my comprehension why, if such a thing did exist, the IV form would be okay while PO was not.
You would have lost any credibility with me when you demanded IV aspirin, and it's beyond my comprehension why, if such a thing did exist, the IV form would be okay while PO was not.
posted by Anonymous: Wed Aug 16, 07:18:00 AM MST
Yep, pple like you turn professional nurses into maid servants and cause the whole system to go dowm the drain.
Yep, pple like you turn professional nurses into maid servants and cause the whole system to go dowm the drain.
posted by Anonymous: Wed Aug 16, 09:45:00 AM MST
yep, people like you who expect and demand professional behavior from professionals are whined at by people who don't measure up to professional standards.
yep, people like you who expect and demand professional behavior from professionals are whined at by people who don't measure up to professional standards.
posted by Amanda M: Wed Aug 16, 07:01:00 PM MST
Hi,
Thought you might like to see the response from another patient advocates....http://www.liverfamilies.net/forum/showthread.php?t=2515. Enjoy!
As for the comments from "anonymous" above - uh, what??? What is this "people like you" business? What does that really mean? Do you mean perhaps frustrated-stretched-to-their-limits caregivers? Or someone-who-clearly-states-what-their-limits-and-needs-are? What do you mean by "people like you?" Seriously - I truly don't understand your comment. The "tone" of your comments implies that there must be something wrong with the letter above, but from your comments I don't understand what that something is. Quick request from the audience here - if you're going to comment, please take the time to really explain so that other patient advocates like myself understand what your response is, and why it is.
As I explained in another comment, my extended family is medical (a doctor, nurses, pharmaceutical reps) and highly educated (a teacher, 3 lawyers, a college professor, and an urban planner trained in conflict resolution) and we've still had problems with care like the Mom & Me Journal author identified. I think that a letter directive is a pretty creative solution to what was clearly a situation that had gone wrong many times before.
As for the first anonymous comment, again, uh...what? Why would a to-the-point letter confirm your decision to leave medicine? I just don't get it...
and ER nurse - why would a question about IV aspirin lose one credibility? There are all sorts of IV painkillers, from a patient point-of-view it's not always clear what's available in IV and not....and that's kind of besides the point. The point is that asking questions can result in better care.
Best wishes to all,
Hi,
Thought you might like to see the response from another patient advocates....http://www.liverfamilies.net/forum/showthread.php?t=2515. Enjoy!
As for the comments from "anonymous" above - uh, what??? What is this "people like you" business? What does that really mean? Do you mean perhaps frustrated-stretched-to-their-limits caregivers? Or someone-who-clearly-states-what-their-limits-and-needs-are? What do you mean by "people like you?" Seriously - I truly don't understand your comment. The "tone" of your comments implies that there must be something wrong with the letter above, but from your comments I don't understand what that something is. Quick request from the audience here - if you're going to comment, please take the time to really explain so that other patient advocates like myself understand what your response is, and why it is.
As I explained in another comment, my extended family is medical (a doctor, nurses, pharmaceutical reps) and highly educated (a teacher, 3 lawyers, a college professor, and an urban planner trained in conflict resolution) and we've still had problems with care like the Mom & Me Journal author identified. I think that a letter directive is a pretty creative solution to what was clearly a situation that had gone wrong many times before.
As for the first anonymous comment, again, uh...what? Why would a to-the-point letter confirm your decision to leave medicine? I just don't get it...
and ER nurse - why would a question about IV aspirin lose one credibility? There are all sorts of IV painkillers, from a patient point-of-view it's not always clear what's available in IV and not....and that's kind of besides the point. The point is that asking questions can result in better care.
Best wishes to all,
posted by Anonymous: Thu Aug 17, 01:27:00 AM MST
wow.
I have to agree with the commment that you have decided that the hospital staff are somehow servants to terrorize.
I agree that every patient deserves respect and good care but you are ridiculous. An elderly patient with a skin tear and some bruises and you make it sound like she was nearly murdered.
You overhydrate your mother due to your complete lack of knowledge and then have the balls to complain about crappy medical care..the health care providers fixed a potentially deadly problem you created and still no respect.
You are almost gleeful about the attention you are getting "everybody knows who I am" yes you are right and everybody thinks you are a monster..and if you think that is helpful to your mother you are nuts. Your behaviour means everyone will do their best to stay away from your mother..you are a court case waiting to happen and no one wants their name on the chart so they will give your mother the very basics and get the hell out.
Being proactive is good, being assertive is good but making ridiculous demands and freaking out over things that are unavoidable makes you a person who overreacts and will freak out over anything and in the mind of the staff you can't wait to get the lawyer.
When you started questioning the aspirin order you lost me..why bother going to a hospital when you are going to refuse treatment?
Then you ask for IV aspirin after you questioned the need for aspirin..why is IV aspirin somehow better? The aspirin wasn't being used as a painkiller by the way, something you should know if you had paid attention during the first TIA, it is antiplatelet therapy to prevent stroke which was suspected at the time of admission.
More importantly the hospital doesn't run on your schedule, it runs on your mothers..you are not the patient and you are not the center of attention..you stated your mother is competent to make her own choices why are you inserting yourself in her healthcare?
The only obligation the hospital has is to the patient not some attention seeking hysteric.
I am horrified by your attitude and behaviour not as a nurse but because I think your mother who is the patient and should be the focus is getting pushed out by your hostile and agressive attitude.
You are not the focus, your mother sets the agenda not you, if she is competent enough to sign legal documents then she is competent enough to participate fully in her own care without interference.
Why should she have to wait for care because you have to go home and feed the cat? Why is she not allowed to consent to treatment when she wants to?
You can't have it both ways, either your mother is competent or she is not and if she is not then she signed those papers illegally.
You weren't treated with respect you were treated like a pariah and not once do you mention how your mother felt about her care.
wow.
I have to agree with the commment that you have decided that the hospital staff are somehow servants to terrorize.
I agree that every patient deserves respect and good care but you are ridiculous. An elderly patient with a skin tear and some bruises and you make it sound like she was nearly murdered.
You overhydrate your mother due to your complete lack of knowledge and then have the balls to complain about crappy medical care..the health care providers fixed a potentially deadly problem you created and still no respect.
You are almost gleeful about the attention you are getting "everybody knows who I am" yes you are right and everybody thinks you are a monster..and if you think that is helpful to your mother you are nuts. Your behaviour means everyone will do their best to stay away from your mother..you are a court case waiting to happen and no one wants their name on the chart so they will give your mother the very basics and get the hell out.
Being proactive is good, being assertive is good but making ridiculous demands and freaking out over things that are unavoidable makes you a person who overreacts and will freak out over anything and in the mind of the staff you can't wait to get the lawyer.
When you started questioning the aspirin order you lost me..why bother going to a hospital when you are going to refuse treatment?
Then you ask for IV aspirin after you questioned the need for aspirin..why is IV aspirin somehow better? The aspirin wasn't being used as a painkiller by the way, something you should know if you had paid attention during the first TIA, it is antiplatelet therapy to prevent stroke which was suspected at the time of admission.
More importantly the hospital doesn't run on your schedule, it runs on your mothers..you are not the patient and you are not the center of attention..you stated your mother is competent to make her own choices why are you inserting yourself in her healthcare?
The only obligation the hospital has is to the patient not some attention seeking hysteric.
I am horrified by your attitude and behaviour not as a nurse but because I think your mother who is the patient and should be the focus is getting pushed out by your hostile and agressive attitude.
You are not the focus, your mother sets the agenda not you, if she is competent enough to sign legal documents then she is competent enough to participate fully in her own care without interference.
Why should she have to wait for care because you have to go home and feed the cat? Why is she not allowed to consent to treatment when she wants to?
You can't have it both ways, either your mother is competent or she is not and if she is not then she signed those papers illegally.
You weren't treated with respect you were treated like a pariah and not once do you mention how your mother felt about her care.
posted by Anonymous: Thu Aug 17, 05:29:00 AM MST
You nearly kill your mother out of your own ignorance (hint: there is no such thing as "severe tenting" - either you have tenting or you don't and old people's wrinkly skin commonly tents no matter how well hydrated they are) and then have to chutzpah to treat the hospital staff like a bunch of slaves - like your mother is the only patient in the hospital and the doctors have no other responsibility than catering to your whims. Here's an idea, why don't you demand that the doctors go home and feed your cats so you can carry on killing you mom?
You nearly kill your mother out of your own ignorance (hint: there is no such thing as "severe tenting" - either you have tenting or you don't and old people's wrinkly skin commonly tents no matter how well hydrated they are) and then have to chutzpah to treat the hospital staff like a bunch of slaves - like your mother is the only patient in the hospital and the doctors have no other responsibility than catering to your whims. Here's an idea, why don't you demand that the doctors go home and feed your cats so you can carry on killing you mom?
posted by Amanda M: Thu Aug 17, 04:04:00 PM MST
Oh anonymous, there's a way to be critical and helpful without being mean... When I read your most recent comment, my reaction is OMG, somebody is having a bad day! Not quite sure your comments meet the definition of "troll" yet, but you're well on your way. Is this how you want the blogosphere to be? Personally, I don't.
Note to mom & me - maybe anonymity doesn't encourage respectful commenting? In some way the vitriol of the anonymous comments is interesting in and of itself, because they're a perfect representation of what happens when health care starts to go sideways... If it were my blog, I would disable anonymous comments, because caretaking is hard enough without being torpedoed. Yikes!
Statements like "you are ridiculous" or other name-calling (a "court-case waiting to happen")are what's called a "personal attack." The Arlington Post has some wonderful advice on how to say what you have to say without making it into a personal attack. Worst case, say, "that sentence is ridiculous. Or, "that's a ridiculous statement." But saying "you are ridiculous" is an attack.
On the forum that I'm an admin for (www.liverfamilies.net) attacking behavior would likely encourage us to remove you from the forum, or at the very least encourage you to seek anger management counseling or conflict resolution training.
As always, best wishes to all. Hope tomorrow is a better day!
Other than that, I won't be giving you any more attention..as I normally have a rule of rewarding only good behavior with attention.
Oh anonymous, there's a way to be critical and helpful without being mean... When I read your most recent comment, my reaction is OMG, somebody is having a bad day! Not quite sure your comments meet the definition of "troll" yet, but you're well on your way. Is this how you want the blogosphere to be? Personally, I don't.
Note to mom & me - maybe anonymity doesn't encourage respectful commenting? In some way the vitriol of the anonymous comments is interesting in and of itself, because they're a perfect representation of what happens when health care starts to go sideways... If it were my blog, I would disable anonymous comments, because caretaking is hard enough without being torpedoed. Yikes!
Statements like "you are ridiculous" or other name-calling (a "court-case waiting to happen")are what's called a "personal attack." The Arlington Post has some wonderful advice on how to say what you have to say without making it into a personal attack. Worst case, say, "that sentence is ridiculous. Or, "that's a ridiculous statement." But saying "you are ridiculous" is an attack.
On the forum that I'm an admin for (www.liverfamilies.net) attacking behavior would likely encourage us to remove you from the forum, or at the very least encourage you to seek anger management counseling or conflict resolution training.
As always, best wishes to all. Hope tomorrow is a better day!
Other than that, I won't be giving you any more attention..as I normally have a rule of rewarding only good behavior with attention.
posted by Anonymous Er Nurse: Fri Aug 18, 09:32:00 AM MST
I checked back and I have to say that I'm surprised that the blog owner left my previous comment up. I would expect someone who is so obviously a control freak to have deleted any messages that weren't in line with her thinking. I have to give credit to that.
Amanda, I don't see the comment following mine as a response to what I said. I think it's directed at the blog owner.
The whole IV versus oral aspirin just illustrates the total lack of understanding. If the concern is about bleeding, then the route makes absolutely no difference. it shouldn't be that hard to understand.
I know this woman. She brings her perfectly oriented parent to the ER and refuse to let them talk to the triage nurse. When the triage nurse attempts to talk to the patient, if only to determine if they are capable of conversation, she demands to talk to a supervisor and writes a complaint. I would've refused to read a manifesto handed to me by her.
Bruised fingers? Come on. Your mother is deteriorating and there is nothing that you or the hospital can do to prevent it. She is dying. We all die and no amount of badgering will postpone the inevitable.
I'm really glad I don't work an inpatient floor. More than a few hours with you would be very destructive to my mental health.
I checked back and I have to say that I'm surprised that the blog owner left my previous comment up. I would expect someone who is so obviously a control freak to have deleted any messages that weren't in line with her thinking. I have to give credit to that.
Amanda, I don't see the comment following mine as a response to what I said. I think it's directed at the blog owner.
The whole IV versus oral aspirin just illustrates the total lack of understanding. If the concern is about bleeding, then the route makes absolutely no difference. it shouldn't be that hard to understand.
I know this woman. She brings her perfectly oriented parent to the ER and refuse to let them talk to the triage nurse. When the triage nurse attempts to talk to the patient, if only to determine if they are capable of conversation, she demands to talk to a supervisor and writes a complaint. I would've refused to read a manifesto handed to me by her.
Bruised fingers? Come on. Your mother is deteriorating and there is nothing that you or the hospital can do to prevent it. She is dying. We all die and no amount of badgering will postpone the inevitable.
I'm really glad I don't work an inpatient floor. More than a few hours with you would be very destructive to my mental health.
posted by Gail Rae : Fri Aug 18, 11:34:00 AM MST
To ER nurse:
I wrote here, last night, yet another post (if you scroll down the main page, you'll find the others) regarding the problem I am having, either with my ISP, or with Blogger, I'm not sure which, receiving email, blogger comments and email notification of those comments. I just made another attempt to straighten the problem out. If there are comments that haven't yet been registered, I assure you it's not that I'm blocking them. This situation is probably even more frustrating for you than for me. You can read my reason for not blocking comments here, which I also wrote last night. I consider it both unfortunate and annoying that this problem is occurring now, just as my post appeared in Grand Rounds but, well, I'm doing everything I can. As of this posting the problem is still not resolved. Just in case this comment also lags in showing up, I state here that I am writing it on 8/19/06 at 10:11 a.m. MST (we don't observe daylight savings time in my state). It will probably take some minutes beyond this time and date for me to finish and attempt to post. In either case, I will also amend the hospital directive post to include this comment at the end. If this doesn't post as a comment, I hope you will take a moment to look up and see this amendation.
Although, in the second above mentioned post, I said I was not going to address comments again, it seems I am moved to respond to yours, ER nurse.
To your decision that I am a "control freak": In a previous comment which I attempted to post a few days ago, which still has not posted (I'm assuming it will eventually be posted) I explained that I did not assume medical advocation on behalf of my mother easily or lightly. I resisted it for some time until I realized I had to do this. I don't always do it well, nor am I always well-prepared to do it. I have written about this many times in my journal. I still don't like doing it. I wish I didn't have to. But, if I have to, I will, and in whatever manner it takes to make sure I am, at least, heard. You would know, if you had read much of my journal, that it often takes very little effort and goes very smoothly.
Second, in response to you knowing me: Actually, you don't. You don't know (although you would if you'd been reading the rest of my journal), that when my mother goes to the doctor or the hospital I don't talk for my mother unless she has already displayed that she is unable to communicate her symptoms and/or she is refusing treatment which she needs and the physician's/nurse's eyes go to me. One of the reasons we retain her current PCP (which you would also know if you had read anymore of my journal) is because he makes it a point to always address her first and asks me for fill in when it is apparent that she isn't completely present and her recall is poor. She has what I call "Dementia-Lite", you see, and has a quirky recall, even on the spot, of where she is, why she's there, her immediate-to-far past and whether or not she needs medical treatment. You would also know this if you had read much of my journal. In June of 2004, for instance, when her hemoglobin was a bit above 5 and she desperately needed a blood transfusion, she was insistent on refusing the transfusion and walking out of the hospital. I reported the whole episode in this journal. It took awhile for both the physician and me to gain her trust and convince her that she needed the transfusion. It wasn't until this point that the physician asked me to sign a document which allowed me, on a one-time basis, to speak on my mother's behalf. At that time, I didn't know such a document existed. Her ability to understand her situation is tricky...she can, at one moment, be "perfectly" lucid and, at the next, be "perfectly" disoriented.
Third, I readily concede, usually verbally, when my information is lacking or wrong, am willingly corrected and am quick to ask questions. You'll note, in the above post, that I was more than willingly corrected on the hydration issue and the aspirin issue while I was at the hospital despite the fact that I overhydrated her by following her PCP's directions from four years previous, directions of which were continually underscored each time she went to the doctor between the initial instruction and the hospital visit for overhydration four years later, all of which has been documented in my journal, as well. You will also note that, although my reasoning at the time was wrong, the neurologist also decided that my mother should not be given aspirin, either way.
And, finally, yes, she is dying. At this point, she is much closer to it than most of us can assume we are. I am always aware of her chronic conditions, that any of them, at any moment, could take her out. At the same time, she has a strong determination to continue to live. She just celebrated her 89th birthday. She has not had an emergent issue since the hydration problem. In fact, under the care of her PCP and myself since the time of the hospital visit referred to in "the post", she has not only not had an emergent issue, her Anemia Due to Chronic Disease is under better control than ever and all her PCP visits have been splendidly routine. You would know all of this if you had read even a little further in my journal. If I was as treacherous to my mother as you and others assume, I don't believe this would be the current state of her medical affairs and profile.
Regardless, I fail to see what her relationship to death has to do with severe bruising of her fingers when being glucose tested, considering that I continue to be able to test her without bruising her fingers.
ER nurse, you actually don't know me, nor do you know my mother. You haven't read enough of my journal to know either of us. You haven't digested enough of what I wrote in the directive and the discussion with hospital personnel which followed to know us. You apparently didn't even understand that I did not write the directive until after I understood that she was to be admitted to the hospital and wanted to make sure that she did not experience the same problems she experienced during two earlier hospital stays. As well, if you had bothered to search out previous posts on hospital visits, alone, you would be aware that I am quick to cooperate and trust medical personnel when it is due. I have a history of lagging, a bit, in noticing problems and working to ameliorate these problems, one of which, documented over and over again in my journal, is receiving conflicting information and direction from medical personnel (all of whom are directed and approved by her long standing PCP) and having to make sense of it in order to make decisions on my mother's behalf. You would also know that my mother's ever voiced wish, demented or not, is to be "poked and prodded" (her words) as little as possible by medicine, and I struggle to honor this wish, as well. Sometimes, as in the blood transfusion episode, I consider it unwise to honor her wish. Then, I'm in for the struggle of my life and hers.
I'm okay, though, with your willingness to jump to conclusions. I understand, as I explain in this recent post, to which I am repeating my previous link.
I know that you and others think that I am simply being tolerated. My experience does not bear this out.
ER nurse, if I could, I would wave a magic wand and see to it that you, my mother, me as her medical advocate and everyone else in the world who ever has or ever will seek and who ever has provided or will provide medical treatment never had a problem, even as some are dying, as you put it (we are all dying, though, every moment), and some are tending to Us Who Will Die, whatever stage of life we're in. This, solution, however, also seems to be beyond my scope, or anyone else's for that matter.
In the meantime, my mother and I struggle, you struggle, everyone struggles. It is an imperfect world. Would that it weren't but, you know, "if wishes were horses..."
To ER nurse:
I wrote here, last night, yet another post (if you scroll down the main page, you'll find the others) regarding the problem I am having, either with my ISP, or with Blogger, I'm not sure which, receiving email, blogger comments and email notification of those comments. I just made another attempt to straighten the problem out. If there are comments that haven't yet been registered, I assure you it's not that I'm blocking them. This situation is probably even more frustrating for you than for me. You can read my reason for not blocking comments here, which I also wrote last night. I consider it both unfortunate and annoying that this problem is occurring now, just as my post appeared in Grand Rounds but, well, I'm doing everything I can. As of this posting the problem is still not resolved. Just in case this comment also lags in showing up, I state here that I am writing it on 8/19/06 at 10:11 a.m. MST (we don't observe daylight savings time in my state). It will probably take some minutes beyond this time and date for me to finish and attempt to post. In either case, I will also amend the hospital directive post to include this comment at the end. If this doesn't post as a comment, I hope you will take a moment to look up and see this amendation.
Although, in the second above mentioned post, I said I was not going to address comments again, it seems I am moved to respond to yours, ER nurse.
To your decision that I am a "control freak": In a previous comment which I attempted to post a few days ago, which still has not posted (I'm assuming it will eventually be posted) I explained that I did not assume medical advocation on behalf of my mother easily or lightly. I resisted it for some time until I realized I had to do this. I don't always do it well, nor am I always well-prepared to do it. I have written about this many times in my journal. I still don't like doing it. I wish I didn't have to. But, if I have to, I will, and in whatever manner it takes to make sure I am, at least, heard. You would know, if you had read much of my journal, that it often takes very little effort and goes very smoothly.
Second, in response to you knowing me: Actually, you don't. You don't know (although you would if you'd been reading the rest of my journal), that when my mother goes to the doctor or the hospital I don't talk for my mother unless she has already displayed that she is unable to communicate her symptoms and/or she is refusing treatment which she needs and the physician's/nurse's eyes go to me. One of the reasons we retain her current PCP (which you would also know if you had read anymore of my journal) is because he makes it a point to always address her first and asks me for fill in when it is apparent that she isn't completely present and her recall is poor. She has what I call "Dementia-Lite", you see, and has a quirky recall, even on the spot, of where she is, why she's there, her immediate-to-far past and whether or not she needs medical treatment. You would also know this if you had read much of my journal. In June of 2004, for instance, when her hemoglobin was a bit above 5 and she desperately needed a blood transfusion, she was insistent on refusing the transfusion and walking out of the hospital. I reported the whole episode in this journal. It took awhile for both the physician and me to gain her trust and convince her that she needed the transfusion. It wasn't until this point that the physician asked me to sign a document which allowed me, on a one-time basis, to speak on my mother's behalf. At that time, I didn't know such a document existed. Her ability to understand her situation is tricky...she can, at one moment, be "perfectly" lucid and, at the next, be "perfectly" disoriented.
Third, I readily concede, usually verbally, when my information is lacking or wrong, am willingly corrected and am quick to ask questions. You'll note, in the above post, that I was more than willingly corrected on the hydration issue and the aspirin issue while I was at the hospital despite the fact that I overhydrated her by following her PCP's directions from four years previous, directions of which were continually underscored each time she went to the doctor between the initial instruction and the hospital visit for overhydration four years later, all of which has been documented in my journal, as well. You will also note that, although my reasoning at the time was wrong, the neurologist also decided that my mother should not be given aspirin, either way.
And, finally, yes, she is dying. At this point, she is much closer to it than most of us can assume we are. I am always aware of her chronic conditions, that any of them, at any moment, could take her out. At the same time, she has a strong determination to continue to live. She just celebrated her 89th birthday. She has not had an emergent issue since the hydration problem. In fact, under the care of her PCP and myself since the time of the hospital visit referred to in "the post", she has not only not had an emergent issue, her Anemia Due to Chronic Disease is under better control than ever and all her PCP visits have been splendidly routine. You would know all of this if you had read even a little further in my journal. If I was as treacherous to my mother as you and others assume, I don't believe this would be the current state of her medical affairs and profile.
Regardless, I fail to see what her relationship to death has to do with severe bruising of her fingers when being glucose tested, considering that I continue to be able to test her without bruising her fingers.
ER nurse, you actually don't know me, nor do you know my mother. You haven't read enough of my journal to know either of us. You haven't digested enough of what I wrote in the directive and the discussion with hospital personnel which followed to know us. You apparently didn't even understand that I did not write the directive until after I understood that she was to be admitted to the hospital and wanted to make sure that she did not experience the same problems she experienced during two earlier hospital stays. As well, if you had bothered to search out previous posts on hospital visits, alone, you would be aware that I am quick to cooperate and trust medical personnel when it is due. I have a history of lagging, a bit, in noticing problems and working to ameliorate these problems, one of which, documented over and over again in my journal, is receiving conflicting information and direction from medical personnel (all of whom are directed and approved by her long standing PCP) and having to make sense of it in order to make decisions on my mother's behalf. You would also know that my mother's ever voiced wish, demented or not, is to be "poked and prodded" (her words) as little as possible by medicine, and I struggle to honor this wish, as well. Sometimes, as in the blood transfusion episode, I consider it unwise to honor her wish. Then, I'm in for the struggle of my life and hers.
I'm okay, though, with your willingness to jump to conclusions. I understand, as I explain in this recent post, to which I am repeating my previous link.
I know that you and others think that I am simply being tolerated. My experience does not bear this out.
ER nurse, if I could, I would wave a magic wand and see to it that you, my mother, me as her medical advocate and everyone else in the world who ever has or ever will seek and who ever has provided or will provide medical treatment never had a problem, even as some are dying, as you put it (we are all dying, though, every moment), and some are tending to Us Who Will Die, whatever stage of life we're in. This, solution, however, also seems to be beyond my scope, or anyone else's for that matter.
In the meantime, my mother and I struggle, you struggle, everyone struggles. It is an imperfect world. Would that it weren't but, you know, "if wishes were horses..."
posted by kim: Wed Aug 30, 11:46:00 AM MST
Hi Gail Rae,
Wow, I am catching up on my reading and actually came to this post through "impactED".
I was contemplating a post and now after reading this, I believe I will actually write it.
I would not have considered you a pariah, nor would I have been insulted by your letter.
I would not have expected you to know that aspirin did not come in an IV form, you are a daughter caring for her mom, not a medical person. I would have explained to you the reason for the aspirin in the context of stroke and held it per your request pending neuro examination (I would have documented why it was held, of course, but that is just routine.)
You were working on the hydration issue with your mom's PCP. It inadvertently resulted in overhydration and was discovered and corrected. You learned new ways of detecting dehydration in the elderly. Trust me, even we medical folk learn from mistakes and having learned, the same mistakes are avoided in the future. Same for you as caretaker.
Re: skin tears - had a patient who came back from CT with one and I cleansed it, put an "opsite" over it and told the family to watch for signs of infection.
And you know what? I learn a lot from my patients. If you had a way of obtaining a blood glucose that did not cause bruising to your mom then I would want to know it, not just for your mom, but for other patients as well. My first experience accessing a port-a-cath was with a patient who walked me through the whole thing - willingly and happily. This was back when they were relatively new and not something ERs usually dealt with.
I saw my husband's surgery pushed back six hours because they were giving him full meals instead of clear liquids. His gallbladder was gangrenous - that extra time could have led to serious complications.
You know your mom and her needs better than anyone. You attempted to facilitate the communication of those needs through your letter.
And you wanted to be acknowledged as part of the health care team while your mom was hospitalized, and to have your particular needs respected.
Since your life is so closely intertwined with your mom's that would not be so unusual.
I don't know. I thinks sometimes we lose track of the fact we are there for the patients.
And I know more about your relationship with your mom than someone who just read the post as it stood individually.
Whew! This is almost a post itself.
Post a Comment
Hi Gail Rae,
Wow, I am catching up on my reading and actually came to this post through "impactED".
I was contemplating a post and now after reading this, I believe I will actually write it.
I would not have considered you a pariah, nor would I have been insulted by your letter.
I would not have expected you to know that aspirin did not come in an IV form, you are a daughter caring for her mom, not a medical person. I would have explained to you the reason for the aspirin in the context of stroke and held it per your request pending neuro examination (I would have documented why it was held, of course, but that is just routine.)
You were working on the hydration issue with your mom's PCP. It inadvertently resulted in overhydration and was discovered and corrected. You learned new ways of detecting dehydration in the elderly. Trust me, even we medical folk learn from mistakes and having learned, the same mistakes are avoided in the future. Same for you as caretaker.
Re: skin tears - had a patient who came back from CT with one and I cleansed it, put an "opsite" over it and told the family to watch for signs of infection.
And you know what? I learn a lot from my patients. If you had a way of obtaining a blood glucose that did not cause bruising to your mom then I would want to know it, not just for your mom, but for other patients as well. My first experience accessing a port-a-cath was with a patient who walked me through the whole thing - willingly and happily. This was back when they were relatively new and not something ERs usually dealt with.
I saw my husband's surgery pushed back six hours because they were giving him full meals instead of clear liquids. His gallbladder was gangrenous - that extra time could have led to serious complications.
You know your mom and her needs better than anyone. You attempted to facilitate the communication of those needs through your letter.
And you wanted to be acknowledged as part of the health care team while your mom was hospitalized, and to have your particular needs respected.
Since your life is so closely intertwined with your mom's that would not be so unusual.
I don't know. I thinks sometimes we lose track of the fact we are there for the patients.
And I know more about your relationship with your mom than someone who just read the post as it stood individually.
Whew! This is almost a post itself.
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