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Sue thank you so much for your words of wisdom it really helps a lot. I may just take you up on your offer to talk soon.

Aimee,
Wow, you have already done great work. You built enough trust that he agreed to return. This is an incredibly complicated situation, so I would break it into small steps. By the end of this post I think you will know why his brain is flight out of the survival responses of fight, flight, or freeze.
Stabilize his body first.
Ask for a formal addiction medicine consult along with palliative care or a cancer-pain specialist. Fentanyl withdrawal, opioid tolerance, cancer pain, fear, and other medical factors are all overlapping. He needs specialists who can treat the addiction, cancer, and cancer pain all together, not as separate problems.
Give back as much control as possible.
In my nursing experience, anger was often the visible layer covering fear and loss of control. Offer small, genuine choices whenever possible. Even small choices can help someone feel like a person again.
“Would you rather talk now or after you rest?”
“Would you like me to stay while the doctor explains this?”
“Would you like to focus on today’s plan or tomorrow’s plan?”
Speak to the here and now.
When someone is in severe pain, withdrawal, fear, or survival mode, warnings about what might happen months from now mean very little. His brain may only be thinking, “How do I get through this moment?”
Try:
“Let’s concentrate on getting you through today.”
“What is making this feel unbearable right now?”
“What would make the next two hours more manageable?”
Do not turn leaving into a power struggle. It is his right to choose.
If he wakes up wanting to leave and has the ability to make that decision, be honest without judging or shaming him:
“I really want you to stay because I am concerned about you. I also hear that you want to leave. Before you go, can we make a plan so you do not have to start from the beginning when you are ready to come back?”
Give choices:
“Would you like me to schedule the next appointment, or would you rather we have someone call you?”
“If you leave today, may I call you tomorrow?”
Most importantly, let him know the door remains open.
Build one coordinated plan.
If possible, have an oncology navigator, addiction specialist, pain specialist, cancer specialist, case manager, social worker, and recovery specialist, and yourself as the person to coordinate the pieces.
He may feel as though he has failed at life, failed because of the addiction, and now his body has failed him too. Addiction is a medical condition, not a moral failure. His response to this overwhelming cancer situation may be dangerous, but it is also understandable.
The immediate goal may not be getting him to commit to months of treatment. It may be helping him feel safe and in control enough to take the next step.
When I was an oncology nurse, I cared for patients in similar situations. It can be a long roller-coaster process with plenty of ups, downs, side-to-sides, and even a few pirouettes. This is a tough situation for your patient and for you.
Please reach out if you want to talk through any part of it. I am happy to help.
Sue

Hi, I’m Mel, a board-certified Adult-Gerontology Acute Care Nurse Practitioner. I have 20 years of experience in endocrinology, intensive care, and diabetes management. I also have extensive personal and professional experience supporting individuals and families affected by dementia. I am based in the Chicago area and offer self-pay services; I do not accept insurance. I would be happy to partner if self-pay is an option for you.

Hi Xena,
I am not in the Chicago area but may be able to help virtually if the clients are in a position to do so. Feel free to reach out if I can be of assistance.

Hi Xena,

Thanks for reaching out! I live in a northern suburb of Chicago and have extensive experience with Diabetes Management.

I offer a 10-minute complimentary consultation to clients and work both in person and virtually. I'd love to discuss more to determine if I'm a good fit for collaborating with you and your client.

I'm getting married in 2 weeks and will be available to take on new clients after 9/7.

Meanwhile, I hope you find some great advocates who can help!

Marilyn Kier, BCPA, BCTMB

Hi everyone! My name is Aimee Dundas, in Litchfield Park Arizona. I’m excited to introduce myself and become part of this community of patient advocates and navigators.

I have more than 15 years of experience in oncology and hematology, with a background as a Medical Assistant, Oncology Patient Navigator and Principal Illness Navigator. Throughout my career, I’ve worked directly with patients and families as well as behind the scenes with providers, insurance companies, treatment teams and community organizations.

Today, my work has expanded beyond oncology to include patients facing chronic and serious illnesses. I especially enjoy taking complicated situations, figuring out where the barriers are, and helping patients and families find a path forward.

I currently serve as Director of PINs with Cancer Care Concierge™ and Chronic Care Concierge™, where I also mentor navigators and continue working directly with patients. I am also the creator of the CCC™ Patient Navigation System™, which grew out of years of seeing how difficult it can be for patients and caregivers to keep track of everything involved in their care.

One of the things I value most about navigation is that none of us knows everything. We each bring different experiences, resources and areas of expertise to the table, and we become better advocates when we learn from and support one another.

I’m looking forward to getting to know all of you, learning about your areas of expertise, sharing resources and experiences, and hopefully collaborating along the way!

Hi everyone! I'm Tiffany Hare, I am new to GNA but not new to patient advocacy. I am a nurse in Southwest Florida with many years of experience in case management, behavioral health, and hospice care. I have witnessed families struggle to find answers and become overwhelmed with our fragmented healthcare system, and have personally experienced the difficulty of navigating for my own loved ones. As a nurse, I have said for years, I am not tied to any one company or hospital, I am dedicated to my patients first and foremost. I decided to take a leap of faith in June and start my own advocacy practice, Rooted waters nurse advocates, to help families navigate our complex health system, review records, and help them find their voice for their loved ones. I am currently pursuing my BCPA certification and am excited to be a part of GNA. I look forward to learning and collaborating with you all!
Tiffany Hare
Rootedwatersnurseadvocates.com

Hello! It's Tracy here from Listening Advocates! I work with the aging population… including solo agers and those managing injury, illness, and those in facilities. It is a BIG job with the aging population growing everyday, and the population of the younger caregivers is much less. I am passionate about talking about it as people are still digesting that idea and what that means! Advocates are more than needed! (If anyone has a good link to understanding Medicaid, I would appreciate… and coupled with LTC and denials -that would be helpful! )
Thank you!!!

Yes, I'm interested in feedback! Try it out and let me know what worked, didn't work so well, which features should be added! My goal is to create useful, no/low-cost tools for the important work patient advocates do!

Has anyone tried this out?

Hi Rebecca,
I’m in Orange County and would love to connect. I tried emailing you but it was returned as undeliverable.
My email is amy@entrustedhealthadvocates.com

hi Rebecca! We've got quite a lineup of advocates in the LA area.
I'm used the PA360 message feature to these advocates and encourage them to join this post. you can also do the same- use this search,and use the 'write a mesasge" to connect to any advocate.

gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Los+Angeles%2C+CA%2C+USA

I am in CO, I’d be happy to connect.
I specialize in cancer and survivorship.
There is a webinar I am doing that you might be interested in participating as well, since it involves billing.

Here is the link:
triagehealth.org/webinars/medicaid-changes-patients/

~Katherine

THANKS fo rsharing!

I purchased my domain name, build an HTML file website using Claude, and then uploaded it through Netlify. It sounds complicated, but it was actually pretty simple. My practice is new and I only have a handful of clients, so I'm only taking payment through Venmo and Zelle, and my business banking account also has a native invoice and payment tool.

For my website, I built everything on WordPress using Elementor, hosted on Hostinger, and paired with Google Workspace for domain management (sonoranwayfinders.com). Elementor gives me complete control over my design without needing an expensive developer, while integrating directly with MailerLite so contact forms and email leads route into my system automatically. For billing, I created a custom spreadsheet tailored specifically to patient advocacy workflows that eliminates the need for expensive accounting software. I built it myself to handle automated time-tracking timers for different clients and automated invoice generation, all completely free without monthly subscription fees. It’s been such a game-changer for streamlining my practice that I’m actually thinking about packaging and selling it to help other advocates simplify their back office, too.

You also could consider working with a program like Umbra for billing, scheduling, setting prices, and a lot more. They are a membership program. Claire Pickering could tell you much more.

Sure, that sounds like a great topic! Particularly if the content can be generalized for nationwide, not just in NC.

So glad to see you asking this, John.

I might suggest a slight reword to your title to make it clear you are offering to provide assistance to the advocate at no cost in turn for your experiential learning.

Welcome John :) You have a wonderful approach in asking to learn alongside others. Together we are better. Best wishes to you.

also — there is a NAHAC webinar around GLP1s this week:

www.facebook.com/groups/616959243721609/posts/1379504134133779

Thanks so much for sharing this, Renea!

CONGRATS TERRY!!!

www.facebook.com/share/p/18MJ57Drmm/

You are correct, for 2026, CMS set the KX modifier threshold at $2,480 for PT and SLP combined with a separate $2480 for OT services.

Generally speaking, $2480 isn't a «hard» cap, it's a «soft cap». The KX modifier isn't a magic bullet, but it tells Medicare that the services are still needed and the medical necessity is contained in the medical record.

That having been said, Medicare can still deny it or pay it now and audit the provider later.

My favorite «go to solution» for situations like this are the FREE, DPT-student-led clinics for any patient who lives near a university or college with a PT program. Those clinics were meant to serve the people you're describing here — out of resources but still in need; while teaching the future DPTs. Availability may vary based on the university, the current patient load, and the academic school year calendar.

When my husband utilized a free DPT clinic, he received simultaneous services from: one, 3rd year DPT student, two, 2nd year DPT students, was observed by multiple undergrads, and had between 1-2 professors also treating and supervising.

Hope this helps!

Thanks so much Jenn! Onboarding is such an important step in building a strong community of advocates!

And, as always, thanks to AnnMarie for all the great work!

Jenn,
I'm… speechless.

Thanks so much for your kind words. I'm so glad you found it worth your time, and worth the brief wait.

-AnnMarie

Welcome Annie and THANK YOU for your dedication. I am just 100 miles from Seattle — so «hello neighbor» :)

welcome annie! so glad you're here!

you might also add your intro (its super welcome here) -in the introductios post, wher eyou can read lots of others folks intros also.

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

Congratulations Annie! 🎉