It was jarring. It was upsetting. And it was taken care of swiftly.
One among us decided that advocacy ethics don’t apply to her. And her actions, way outside our best practices and ethics, could have caused a patient to die.
This is what happened (with no names or identifiable citations, because it could have been anywhere or anyone, and those specifics aren’t the point):
I was first informed of the problem last October (2020) when I heard from the Senior Investigator from the State Board of Nursing. She had identified me as a leader in the profession of independent health and patient advocacy. She asked me these specific questions:
- Are there certain boundaries you cannot cross as an advocate?
- Do you need to have certain qualifications to be an advocate?
- Do you have to have Malpractice insurance?
- Are you able to work as a nurse advocate and sell products for profit?
I answered her questions, telling her about the boundaries that exist due to our ethics statements, the existence of insurance (although it is not malpractice coverage because we don’t practice medicine) and that it is against our ethics to sell products for profit, or to accept commissions or high value gifts for our work. I sent her links so she could see the lines that could not and would not be crossed by an ethical advocate.
I then asked what triggered the questions. I hoped her reply would help us learn more about making sure that, as advocates, we don’t cross professional boundaries.
Her reply floored me:
I have a nurse who calls herself an elder advocate. She assists clients with calling the insurance representatives, suggesting caregivers and being there for doctors appointments for support and things like that. She has been accused of selling items to her clients for profit because she works for the company, she was also very close friends with the person before she took her on as a client. There seem to be some lines crossed but I could not know for sure until I got more information about advocates.
The client was in the hospital at the time and the nurse that worked there noticed the supplements and was concerned because some of them if taken would have conflicted with the medication the patient was on so, she filed the complaint.
You can see why I was upset. Of course, I have no idea who the offender is, but I was upset that she informed the hospital nurse that she was an advocate, yet so brazenly violated so many of our advocacy ethics.
Bad enough that she put the patient’s life and health in jeopardy. But she also put our profession’s highly ethical reputation in jeopardy, too. How dare she?
I asked the investigator to let me know what their ultimate decision and outcome was. I heard back several weeks later that a “letter of concern” had been issued to the offender, letting her know that if her behavior continued, there would be discipline. There was no specification of what that discipline might be. (Note: the discipline would be to her nursing license. It was the Nursing Board that made the inquiry.)
So why do I share this with you today?
A handful of reasons:
- Prescribing and selling products to clients as an advocate is an ethics violation, and a major conflict of interest. That is also true for nurses. But in this case, she called herself an advocate, and therefore she sullied the advocacy profession. Calling herself an advocate as part of her defense was a slap in the face to all of us advocates who take our ethics seriously.
- Certification: I have no idea if this person is BCPA-certified. But if she is, and she is somehow identified, she could risk being bounced from her certification. That could also be true of other certifications she might hold.
- Liability insurance: Suppose the patient had gotten sicker or died? Suppose there had ultimately been some sort of licensing sanction or other punishment? I checked in with APHA’s Insurance Advisor about whether her liability insurance would have covered her in the case of a bad outcome. Of course, we have no idea if the offender holds advocate liability insurance, but our Insurance Advisor was very clear – VERY clear – that no, advocacy insurance would not have paid for any of her legal needs. In order to get the insurance to begin with, advocates must state in their client contracts that there will be no hands-on medical care provided. And OMG – selling supplements that make a patient sicker? I can’t even imagine what that request would sound like.
As patient advocates, we have very few limitations to the work we do. Don’t do anything unethical, or illegal, or medical, don’t make any promises you can’t keep, and don’t tell a patient what to do (which includes making recommendations.) This offender violated at least three of those tenets, while claiming she was an advocate.
Outside of that? Our work is summed up as Hustle! Using Chutzpah! Pulling out all the stops! Then, above all – making sure that we protect our OWN reputations while protecting the ETHICAL reputation of independent advocacy, too.
You’ll never get a second chance to make first impression. While focusing on your own reputation, be mindful of your responsibility to protect our profession’s reputation, too.
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Hmmm…interesting and tricky. I say this as someone who is educated as a clinical onco-nutritionist and works as both a cancer patient advocate and cancer health coach and who is an active member of both ASCO and the society of integrative oncology. I have insurance:)….and use professional databases to insure anything my clients take is not problematic for their treatment, diagnosis, or comorbidities. My clients tend to come to me on lots of supplements and I work with them often to get off those supplements because normally they do not help and cause more burden on both liver and kidney function that is already stressed due to treatment(s). I do not sell supplements and do not partner with N.Ds (naturopathic) who sell supplements.
All that said, do I made evidence-based recommendations for side effect management? Yes, I do. Here’s an example: those of us who live with cancer often struggle with aniema and allopathic medicine has not found a great way to treat these conditions (I have struggled with this for years myself). So what do to? I go to Pubmed and after reading through a lot of information explaining that this is a major isue in cancer I came across a 2017 CAM study that showed promising results in treating differing blood cancer treatment complications. The study used papaya leaf tincture, wheatgrass, and amla (an East Indian fruit) to help bring up both WBC and RBC. I started the daily dosing suggested and I also let a breast cancer patient know about it too. We both had baseline bloodwork done and both just had our CBC checked again. I am no longer anemic for the first time in over a decade and my client’s blood work increased enough to be safe to have the Covid vaccine.
How I’m reading this post, this makes me a bad advocate. I’m not sure if I would agree.
And as always, Ms. Trisha, I appreciate your point of view. My thought is we should never sell supplements and the like and also that we need to embrace healthy food, good company, enjoyable body movement, nature, and meditative practices as helpers to heal as we work with our clients and their medical teams.
Cheers and be safe
Sheri
Sheri – I don’t know how you can conclude that you are a “bad advocate”. Far from it!
The takeaway from this post should be that crossing ethical barriers can be dangerous to both a patient and to our profession. You haven’t crossed any barriers as long as your discussion with a client is focused on “I’ve read about this and I’ve tried it myself. Is it of interest to you?” (Inviting your client to think about it and make a decision.) As opposed to “According to this article you should be doing X or taking X.” or “Here – I think you should try these supplements and oh, I just happen to sell them, too.”
Those are VERY different. Your approach is clearly the former.
(And even more importantly, if it’s helping and working for you – then ya-hoo! I’m happy to hear that, knowing you’ve struggled so many years with your cancers.)
Trisha