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Thank you!!!

Hi Rachel, I'm sorry this is not my area of expertise. Let me think about anyone else I know in the area who may be able to help.

I serve clients primarily on the Olympic Peninsula. I hope there is someone in closer proximity who can assist.

This is an important conversation. Thanks to Alison for raising these issues. — I have separate contracts covering my advocacy services and serving as an agent/proxy/surrogate. I do not engage in both at the same time. — I will not serve as the sole agent/proxy/surrogate because all too often there are family conflict scenarios involved, especially when inheritances are a factor. I typically ask my client’s personal attorney or close friend with a legal background to co-serve with me. I also require my client complete a POLST/MOLST in addition to a healthcare directive before I will accept this role. Finally, it is mandatory for my client to meet with me and their selection of my co-agent prior to any major health complication arising. — While no one can guarantee a 100% problem-free scenario, I always feel better when serving as a co-agent.

Alisha, thank you for sharing your perspective! Your experience as a public guardian brings a valuable dimension to this discussion, especially when considering difficult family dynamics and the challenges of making decisions on someone else's behalf.

Regarding conflicts of interest, complicated family situations would certainly be a concern for me. I've discussed this with an attorney I work with, and I believe much of the risk can be addressed through careful planning before an urgent situation arises.

Ideally, the client and their attorney have already established legally executed documents, clearly documented healthcare and end-of-life preferences, and discussed how potential disagreements should be handled. Those documents provide the legal framework for guiding decisions when the client can no longer speak for themselves.

Another important consideration is serving as both an independent patient advocate and a professional healthcare surrogate. The Patient Advocate Certification Board addresses the importance of recognizing dual-role conflicts, and I believe separate written agreements, clearly defined responsibilities, and transparent billing are essential.

Other potential conflicts include financial incentives, referral relationships, family members who are paying for services, and situations where our personal beliefs differ from the client's expressed wishes.

That last one is particularly important to me. For example, imagine a client who specifically requests that certain family members not be notified of a serious medical event. Personally, I might struggle with that decision. However, before accepting the responsibility of serving as their healthcare surrogate, I would need to determine whether I could honor those wishes within the boundaries of the law and my designated authority.

I believe recognizing our own personal boundaries is just as important as understanding our professional responsibilities. If we cannot set aside our personal feelings and faithfully represent someone's wishes, we need to recognize that before agreeing to serve.

I would also consult with a trusted attorney before accepting a case involving significant family conflict.

I think these are important conversations for our profession as more advocates consider professional healthcare surrogacy.

Given your experience as a public guardian, I'm curious whether you've encountered situations where your personal beliefs differed from the individual's expressed wishes. How did you navigate those situations while maintaining your professional responsibilities?

I'd love to hear your perspective, along with any additional safeguards or conflicts you think we should be considering. I believe we can all learn from one another's experiences.

Thank you again for contributing to this discussion!

These are great questions, Alison, and I look forward to input from others. In my previous role as a public guardian (appointed by the probate court in my state), I had very clear guidelines on decision-making, and while the healthcare proxy/surrogate role is slightly different, I feel the decision-making process is much the same. Where I do have some questions is on the question of how I would respond if there were a family member contesting my decisions. In my guardian role, I always educated and encouraged family members to take their concerns to the probate court, where the judge would issue a ruling on the legal appropriateness of my decision-making.

Can you give any examples of concerns about conflict of interest?

In a surrogacy situation, the court likely still has some ability to hear concerns and issue findings. Which court? That probably varies from state to state. Developing or obtaining a document that potential surrogacy clients complete AND review with both you and any involved (or potentially involved) family members is key. Reviewing that document after any significant health changes and with some regularity is essential.

I plan to consult with my attorney on this before moving forward with accepting any surrogacy cases in which there is the possibility of family dispute. Heck — even the most basic families disagree over these kinds of issues. I might only accept surrogacy clients who are truly solo agers!

Thanks for opening this conversation!

I’ve had this request a few times & have clients who have been comfortable speaking with prospective clients. This assumes I feel I can help the person from my consultation with them, & that it would be a good fit.

I don’t share any PHI & the client can choose if they want the person to call them (so their contact # is shared), or if they want to call the prospective client.

Something you may want to consider for the future is using a (HIPPA compliant) potential client interview form, where you can reveal what the person wants/needs.

This makes excellent use of your time together too...and, don't take this wrong — I also use it to look for red flags. The important thing is being the best «fit» for both of you so you can be at your best.

If a potential client makes me uneasy at the interview stage, I would kindly and firmly let them know I am not their best fit. I might say, «thank you for that question, however it makes me uncomfortable because...(confidentiality, HIPPA or whatever) and give your reason, and see where that leads.

Hope this helps. BTW — You are welcome to grab my interview form from my website :) www.hospitaltohealth.com

I offer a link for clients to leave me a Google review when my services conclude, or earlier if there is a long standing relationship. Leaving a review is their option and what they put in the review is their choice. If I have a client ask for a reference, I send them to my reviews.

if you have an MSW, you can get insurance through HPSO for a ridiculously low premium

Hi, I appreciate everyone sharing their information and knowledge. There seems to be a great variety of classifications patient advocates fall under. I'm moving forward, thank you all!

It sounds to me like this exclusion would be if you were doing the billing for a physicians office or other healthcare provider. I would seek clarification to make sure they don't think you are actually doing medical billing.

BiBerk has me listed as Healthcare Management Social Services. My rate is based on my annual exposure, which is based on my annual revenue.

Hi Alison,
Welcome to this wonderful advocacy community!!.. I am Sangeeta Buragohain, an Independent Patient Advocate, Physical Therapist / Insurance reviewer by background and a part time advocacy liaison at Greater National Advocates. I specialize in hospital and rehab advocacy.

HI alison! welcome and thanks for introducing yourself!

There's a huge thread of introductions. I'd like to encourage you to add your info there and interact with others in that conversation!

gnanow.org/community/taking-business-to-next-level/general-tbnl/91-welcome-to-pa360-please-introduce-yourselves.html

Hi Alison! Nice to meet you! I am Sofie, and I work at Greater National Advocates as a manager. I don't practice advocacy directly, but I work hard to make sure our advocates get what they need and keep GNA running smoothly!

Hello everyone, I’m Dr. Tabu Terrell, a retired emergency physician and the founder of HealthStrategix, an independent patient advocacy practice based in Fort Mill, South Carolina, just outside Charlotte. I practiced emergency medicine for 14 years and was board certified in the specialty for two decades. Long before I started HealthStrategix, I was the person friends and family called when a diagnosis or treatment plan didn’t make sense to them.

My focus is the difficult middle stretch of an illness: when specialists give conflicting opinions, when a family is facing a hard treatment decision, or when care has become complicated enough that nobody seems to be looking at the whole picture. I help patients and families understand what they’re hearing from their doctors, prepare for appointments, and choose a path that fits their goals. HealthStrategix is direct-pay and independent of hospitals and insurers. I meet with clients in person in Fort Mill and virtually.

I’d love to connect with advocates who focus on billing, insurance appeals, or care coordination, since those clients often need clinical interpretation too, and I’m happy to trade referrals. My site is www.gethealthstrategix.com. Glad to be here!

Hello everyone. My name is Shanequa. I'm reside in NC. I primarily work with complex patients. I'm looking forward to learning from you all.

Hi all! Mallory from the Virginia side of the DMV. I work primarily with complex, chronically ill patients and love a medical mystery! Feel free to reach out to me directly if you have a weird one — I might have some resources or suggestions!

Thanks for sharing!

I would love to learn! 512-409-8548 rachelgarvin@14thstreetadvocacy.com

I just succeeded in securing approval for a long covid client who was rejected for months to begin these infusions. The process was challenging but I was successful.

avi

Yes! Thank you, Jessina!

I would love to be considered for a scolarship. I don't currently have health isurance. I was diagnosed with CCI/AAI before records were electronic.

awesome resource

Donna — THANK YOU SO MUCH for sharing this information!!!

This is such a huge need. we as the EDS community are so excited to hear about this progress. thanks for sharing!

I'm using Carepatron. It's so-so, but gets the job done. I'm planning to consider other platforms as my business grows, but Carepatron has a pretty solid free-tier so I'm finding it to be a good option as a «starter home» so to speak.

A quick sanity check as you weigh options. Skip the portal obsession: Most clients in a health crisis do not want another login, password, and 2FA to manage. They want clear PDF briefs, organized agendas, and clean invoices delivered directly to them.

Audit your true day-one needs: the majority of solo advocacy comes down to four basics: tracking time/retainers, structured encounter notes, medical chronology mapping, and visit agendas. Most everything else is bloated software overhead.

Watch the lock-in: When a platform controls your records, switching later if pricing jumps or support degrades is brutal.

If you're already having a bad experience with a vendor before signing an agreement, trust that instinct. Keeping early overhead near zero and owning your records locally often serves a solo practice far better than renting clinical software.

I use SuiteDash and absolutely love it, they offer everything I need, and as each employee completes the task they need to do it automates to the next hand down, like for example once intake has them onboarded and the consult appointment set it automatically goes to the advocates for care and work.

Thanks to Amanda for commenting! All great stuff in there (as expected from our advocacy pain expert).

I had a few months where I was getting tons of these calls myself, so I found some literature and resources. Some is specific to California, and most of my little comments are written for a patient/client email, but you'll get the idea! (Also, I haven't checked most of the links in a few years, but hopefully they are all good. Comment if you find a broken one.)

This fact sheet comes from a group dedicated to policy advocacy for people with chronic pain. nationalpain.org/fast-facts-opioids and this one is a curated list of some of the literature about the harms of tapering against the physicians best medical judgement: nationalpain.org/resources-pain-opioids-patient-harm#facts
More resources from them: nationalpain.org/resources

California state guidelines on opioid prescription: (see page 14 on tapering)
www.mbc.ca.gov/Download/Publications/pain-guidelines.pdf -this one may be a bit hard to read, but it talks about all of the good reasons to reduce a person's dosage of pain meds and why and when and how to do it carefully. Basically it needs to be done with you (the patient) making decisions together with the doctor.

AMA Ethics article about non-consensual tapering: journalofethics.ama-assn.org/article/nonconsensual-tapering-high-dose-opioid-therapy-justifiable/2020-08

This piece was written by a doctor who has experience with chronic pain — its a great read, but it is a little complicated. There are tons of links to studies that your doctor will appreciate, and there is a numbered list of things you can try saying. stefankertesz.medium.com/my-doctor-says-they-have-to-lower-the-long-term-opioid-what-can-i-do-what-do-i-say-b3d35776379e

All that said, there ARE reasons to want to taper opioids, especially for long-term non-cancer pain. They have side effects. So if I can get the client/patient on board with the goal of «pain management» over the goal of «getting my meds» then I want to get them adjuncts. I like the metaphor of a car with 4 flat tires — even if acupuncture (or whatever) alone isn't going to get you back to functional, then maybe acupuncture + a pain psychologist + massage + gabapentin will… This is where I heard that analogy: www.acpanow.com/#/ and they have peer support groups, iirc.
And this is a directory of pain psychologists and some resources: aapainpsychology.org/resources/

I also saved a link to this app, but I don't know if it's good and haven't talked to anyone who's used it.
Curable — The App for Chronic Pain (https://www.curablehealth.com/)
-app for coaching, some CBT, mindfulness/grounding exercises, meditations, visualizations, motor imagery, education, stories of others
-2 week free trial, then paid. $16/month, or $8/month if you buy a year.

As an anecdote, I have an older family member who lives with chronic pain and many other conditions. She's done great with buprenorphine patches, in part because they come with a pain management team (RN she can call when she has questions, and a doctor who regularly prescribes this med and suboxone) — really better than she ever did on oxycodone pills. So, definitely agree that it's worth suggesting callers ask their doctors if they know anyone who can do this and refer out.

I mostly manage opioids for GI and cancer clients. Here are some short- and long-term approaches I use, including some of what's been mentioned here.

In the short term, I encourage my clients to track their pain level (1-10) and medications by time of day. If they have the bandwidth, I also encourage them to note the pain location and a description (sharp, searing, dull, etc.). When they talk about their pain with their providers, I may ask them to share what their pain has stopped them from doing (if they shared something relevant with me beforehand). Sharing this information with providers can help them get a fuller picture when making their assessment and prescribing.

I also encourage clients to be completely honest about their (legal and illegal) drug use; to obtain and learn how to use Narcan; and to prepare/share a list of how they manage their pain besides medication (e.g., meditation, therapy/support, yoga, TENS machine, acupuncture, etc.). Showing all the pathways the client has taken supports their valid requests.

It's critical I make clear to the provider which medications have been stopped or are inaccurate. Sometimes a clerical error for a drug that is no longer taken is enough to make a provider hesitant to prescribe more or something else. This is where I step in as an advocate to speak for the patient to share if a script was never picked up, whether the supply was completed as expected, or details on the dosage, frequency, and situation when a specific drug did/did not work.

When the client is struggling to understand why they are having trouble getting a prescription, I will share information or provider chart notations from the client's chart; for example, when they are outside the average on their ED screening scores. This can help clients understand where providers may be coming from.

Like Ilene, I've found that in the long term, connecting clients with a pain management, palliative, or hospice care provider TEAM is the best long-term option. I've found they are more knowledgeable and willing to discuss not only opioid drugs but also the medications to combat the side effects of opioids and other medical and non-medical options, including, but not limited to, mental health and cannabinoid products. In addition, they can best help manage tapering down and the side effects of withdrawal.

Why a team? So clients have access to multiple providers as needed, may be eligible for home visits, and often have a more responsive 24/7 line to call. This is also helpful when the patient has to go to the hospital or their PCP in crisis because there's a record that they have a palliative care team that can advise them and that someone specific is managing all pain medications.

Finally, when working with the provider and client, I will advocate for or ask, «What else?» Alternative options I've pursued or had patients prescribed include lidocaine patches, a nerve block, prescription NSAIDs (e.g., celecoxib and Toradol), and anti-anxiety medications.

I have taken my client to a «pain» doctor who is much more knowledgeable and empathetic to this situation. This doctor recommended Gabapentin as an alternative but did not stop the use of Oxy completely. Together we monitor the use, and it has been less and less use though still not off completely. Not sure if this is helpful but it is what I did, and we are still working on it…

Just an update on this. I went with biBerk who was the only provider that could cover everything I needed and who also is a fraction of the price of some of the other quotes (~$750 vs $2000+).

Jenny's recommendation of Dennis Bernstein (dennis.bernstein@piascins.com) was a huge help and I'd recommend people connect with him if they are in the market for an insurance broker.

Thanks again for everyone's insight!

I use Biberk but only because it was recommended to me. My agent April was very thorough in finding out what I do and what I need. She bundled a couple of things and got me a good price. Thankfully, I have yet to need it but it covers general, cyber, and professional liability and includes an umbrella policy with extra coverage for property as well. I do in person as well as virtual advocacy so I wanted to cover all my bases. Good luck to you!

Hiscox

Hi Lola. Welcome! I'm a PhD in Tucson AZ, degree in Pathology. I struggled with genetics a lot!!! I don't really focus on rare diseases, although I will tackle almost any condition.
I grew up in Des Moines and know what a great school U of Iowa is. I give you a lot of kudos for keeping at your degrees at the same time taking care of your mother. You will be great at advocacy.
Best of luck in your future endeavors.
-Nancy
StepwisePatientAdvocacy.com

Welcome to this space! Your expertise is greatly needed and I look forward to seeing where your business takes you.

Lola,
Thanks for sharing your unique background! we're so glad you're here
could i suggest adjusting the title of your post to help others know your unique niche? i can edit it for you if you prefer.

thanks os much for sharing marc! would love to learn more about any unique challenges you see, for example, with seniors aging in place in such a massive city.