Patient advocates? what does that look like?

  1. 0
    I am interested in feedback on this situation...

    Imagine a mid 20s young woman who likely has PCOS but has not received a definitive dx. Last year, she bled for 8 months and then went to the ER of a large university hospital where she was found to have a Hgb of 7 something, was admitted and transfused. She followed up with the docs at that clinic and they were able to get the bleeding stopped with hormones (BCPs in high doses). They wanted to do an endometrial biopsy and other tests but the patient had just started a new job and her insurance had not yet kicked in. She simply could not afford that care.

    Fast forward to the present. Same young woman...now working for another employer, this time in an MD office FT with no benefits. She has now applied for and receives Medicaid coverage. She is having a hard time finding a PCP. She has been bleeding since October of 2009 and at last check had a Hgb of 8.5 (approx 1 mo ago). Approx 3 weeks ago this young woman went back to the gyne clinic at the university. They gave her a high dose of hormones (BCPs) which stopped her bleeding over several days. Then they requested that she return, at which time the docs asked for and then completed an endometrial biopsy. They told the young woman that she would bleed and cramp lightly for several days after the procedure. Metformin was started and the young woman is taking it daily (it causes nausea daily). They changed her to a new BCP (one that is currently in the news with some litigation type stuff). Immediately after the biopsy this young woman started cramping and bleeding heavily again. She is now bleeding as heavily as she was before her visits, now with cramps...and the nausea. She is a single mom working FT.

    Seven days after the biopsy this patient called the gyne office and spoke with a nurse. The patient was concerned that she was bleeding so heavily and having cramps. The nurse told her that bleeding and cramping were expected for several days after the procedure. The young woman told the nurse that she expected some bleeding for several days but was under the impression that it would slow and stop over a short time, and it has not slowed or stopped. As well, during that conversation, the patient told the nurse that she does not feel that this new "designer" BCP was working and she had concerns about its safety because of information she has seen on the tv about it, particularly related to heart patients (this young woman has a congenital heart defect and has been completely pacer dependent since the age of 2). The nurse advised the young woman to continue to take her meds as prescribed, to be patient..."it may take several months for the plan to work", and to keep her next appointment (2 months in the future). When the young woman asked to speak with a physician, the nurse told her she would write a note in the chart and put in on the physicians desk.

    The young woman waited 48 hours with no call from the doc...so she called the clinic back...and spoke with a different nurse. A very similar conversation followed with the patient providing a reasonably concise outline of her symptoms and concerns. The RN stated that she would put a note in the chart and have the doc call her...this was an A.M. conversation before 0900. No phone call from MD that day or next morning. Patient calls back afternoon of next day and speaks with another RN who can find NO notes or references about any of the calls in the chart...the patient must repeat all aspects of her concerns etc.

    This RN spends almost 30 minutes on the phone with this young woman during which time she questions the young woman's judgment about the BCPs ("you were on a much bigger dose before and THAT didn't seem to worry you, why would you be worried about this little dose?") She told the young woman that she would "just have to tough it out until the medications can work" When the patient asked why they weren't concerned that she was still bleeding and cramping, now day 10 post biopsy, when that was not "normal" by their own standards the RN replied that she had been a nurse for over 30 years and she wasn't going to "argue" with this patient. The RN did agree to notify the MD and advise of the patient request for a phone consult. The patient was in tears and in fact was distraught by the end of the conversation. That conversation was on a Thursday afternoon. The young woman verbalized to me that she felt, each time, like what she felt, thought, or wanted really had no importance to the nurses she spoke to. She stated that "it was like they could have cared less what I wanted when I called, I was bothering them and the doctors". The patient called the office on Friday morning and requested an urgent appointment for Monday AM.

    The MD called this young woman on Friday evening about 5:30. It was a brief conversation. The doc immediately changed the hormone back to the previous orders (pre-biopsy), told her to cancel her appt and resched it immed after she stopped bleeding. The patient said that the doc was pleasant and sympathetic and she felt reassured after the conversation.


    I am curious as to how you view these patient/nurse interactions...I personally feel that these nurses were not acting as patient advocates and in fact, slowed the health care process for this young woman. I am saddened that this patient, who called for help, was again and again told that she had no reason to be concerned and was seemingly "blown off" by the nurses. I am concerned that these RNs didn't even apparently document their conversations with this patient in her clinic chart.

    what do y'all think...?
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  4. 16 Comments so far...

  5. 1
    I have been treated like this by nurses when I was having similar problems related to adenomyosis. I went through 10 years of agony before finding a gyn (who did not accept insurance) who was empathetic and viewed me as an entire person, not just a whiner.

    They are drones. Unfortunately, there are many.
    LovebugLPN likes this.
  6. 1
    The problem is the patient's lack of insurance. Medicaid is viewed just the same as nothing. The physician (practice) although friendly to the patient, has instructed staff to put off (or not accept at all) those without insurance/medicaid. The ER, although responding to the blood count is also not interested. ER and gyne do not mix well. There is a total lack of interest of gyne in the ER. Another thing, I have to add is that the pt is 20. Many gynes just don't look at this type of condition in that age group as urgent.

    The patient needs a job with benefits. Even then there will be a delay in tx due to preexisting condition wait period. What she can do is to research and look for someone who is interventional in nature and respected for listening to patients. Tip: look to forums/associations for those that suffer from endometriosis, PCOS, fibroids, etc. Never take advice from forums as God's truth (as here) but use them as a springboard as many women have concurrent conditions.
    SuesquatchRN likes this.
  7. 0
    A very good springboard for resources:

    http://www.endometriosisassn.org/index.html
  8. 6
    my dtr has been complaining of abd pain to her pcp/clinic x 1 yr, only to be relatively dismissed.
    (they prescribed her protonix, and drew labs)
    recently, she became acutely symptomatic, results coming back as a growth on her kidney and enlarged liver.
    she told me recently left a message at this clinic, to the effect of:

    'you people have ignored my concerns for the past year, even though i insisted something was wrong.
    if you folks don't get your **** together and respond to my immediate needs this time, you're going to be dealing with my attorney, who insists he has a strong case of neglect from your facility.'

    within 5 minutes after hanging up, my dtr got a call back, and all her concerns tended to.

    i was shocked (yet very happy) she did this...
    i didn't think she had it in her, and 'mommy' was getting ready to intervene.

    sometimes you need to do whatever it takes to be heard.

    tewdles, tell her it's time to start kicking a$$.

    leslie
  9. 0
    What I think about this interaction scenario cannot be printed in family-friendly words.

    While the patient's Medicaid status may have had something to do with it, I fail to see why that would (or more importantly, SHOULD) have impacted the call documentation procedure in two different instances. That is deplorable.

    For the nurses to brush off the impact of the drug on her known, long-term heart condition, along with her heavy bleeding and cramping, multiple times? Even though the drug is known to be problematic for those with heart conditions? And to do so without so much as documenting the call or notifying the doctor until the third time she called? I'm not all that experienced in risk management yet, but that sounds like it could possibly constitute a sentinel event. It is certainly not anything approaching patient advocacy - nor is trying to intimidate a patient out of her concerns by telling her "I've been a nurse for 30 years and I'm not going to argue with you!"

    Good heavens, what a terrible situation for that poor patient! I would have been so torn - frightened and in pain because of what the drug was doing to my body, but intimidated and discouraged by the "advice" I was being given by the nurses.

    @Leslie: Totally awesome. I'm sorry your daughter had to go through that, but she sounds like one tough cookie!
  10. 2
    Quote from 2ndwind
    The problem is the patient's lack of insurance. Medicaid is viewed just the same as nothing. The physician (practice) although friendly to the patient, has instructed staff to put off (or not accept at all) those without insurance/medicaid.
    Herein you have outlined the primary, fundamental problem with healthcare in the United States.

    Why should it matter if a patient has no insurance or is on Medicaid/Medicare?
    Why should it matter if a person is rich or poor; educated or illiterate?

    The very fact that your proposed solution is that the patient find a job with benefits is insulting. I'm assuming you don't have any family members who were unable to complete high school the conventional way (for any of a hundred different reasons) and had to resort to obtaining a GED later on?

    Try walking a mile in those shoes.

    When I worked in sales, we were trained to treat every customer equally and to provide the same level of service regardless of whether that person was buying a battery or a computer system. When I changed careers, I saw this mentality duplicated in the clients I dealt with on a daily basis.

    Now that I am in training, I teach my staff and my clients to promote the same attitude.

    Why is that such a hard thing to do?
    talaxandra and tewdles like this.
  11. 1
    Dawg, Here is the deal.

    What I posted is a reality. It is not right, but it is real. Most people, even nurses are not aware of this reality if they have not ever been on the receiving end of it. I speak from vast knowledge of who the players are. I have...

    Been employed with insurance.

    Been self-employed and purchased insurance even during times when I had to cut back everywhere just to afford it, No matter how high the deductible.

    Have fought to overturn denial of insurance claim coverage for myself.
    (Brought it to high-level government attention with full documentation and was successful. And, I believe I caused quite a stir)

    Have fought for many patients in private practice. I am the one you want looking out for you.
    leslie :-D likes this.
  12. 0
    I appreciate your responses...I was concerned that perhaps I have a skewed view of what nurses ought to be doing relative to patient advocacy...

    I am reassured that maybe nurses ARE stilled trained and expected to advocate for patients, not just meet the needs of the employers and physicians.
  13. 2
    I was an OB/Gyn office nurse for 10 years and I would have never looked at her insurance to factor that in on how i triaged the call.

    I would have assessed the amount of flow, risk for infection, on and off OCP use and that also causing issues and i would have spoken to the MD myself about her and whether she needed to be seen or we could continue to manage the symptoms telephonically.

    Insurance would have had nothing to do with my advice in any way, shape, or form.
    tewdles and TDCHIM like this.


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