MY LIFE Matters - Advocacy in Action - 21

THE IMPORTANCE OF ACTION Use Your Voice
Left to right: Pat Washington, PhD, RN, OCN, my mother Grace
Washington, Regenia Washington-Redmon, Jonathan Redmon, MD, FACS,
little Reagan Harper Redmon, and Jonathan's Mother, Georgia Redmon.
Coming and going, repositioning, medications,
meals, bathing, whispered conversations with
doctors and nurses, comforting, prayer, wiping of
tears, the gentle stroking of a head or hand, all done
with great care and with pure love. In our family,
as soon as you could carry a glass of water without
spilling more than half of it, you, too became a part
of that loving care that is at the heart of advocacy.
GET ORGANIZED WITH A MEDICAL HISTORY
TRACKER/BINDER:
Create an organized physical binder or electronic
file with important reports with dates and details.
Much of this can be found in your clinic's electronic
patient portal. Include tabs or folders for:
* Past medical history: Include diagnoses of chronic diseases,
allergies, surgeries, hospitalizations, and major physical and
mental illnesses.
* Wellness history: When was your last mammogram, bone
density, pap smear, colonoscopy, skin exam, dental, or vision
exam, etc.
* A comprehensive list of all your physicians, including those
not associated with your cancer care, should include their full
names, addresses, phone/fax numbers, and emails for each one
so that records can be easily shared.
* Medication list: With all dosages/frequencies/start and stop
dates of every single medication you take, even those taken on
occasion. Be sure to include over-the-counter supplements/
meds (highlight changes and leave room for additions when
at appointments or as you pick up new ones from the pharmacy.)
Include your cancer treatment medications. Keep a copy
of this in your wallet/vehicle or in your phone in the event of
an emergency.
* Pathology/genomic testing reports: These reports are crucial
for treatment planning.
* Imaging/radiology: Always ask for a disc or copy of your
imaging reports such as CT/PET, X-rays, bone scans, echocardiograms,
etc.
* Labs
* Advanced directives/powers of attorney: Always have copies
of these documents on hand. Social workers or other clinic
staff can often assist with obtaining and filing these documents
with appropriate personnel.
START A " TREATMENT TRACKER " :
Keep a paper or electronic calendar to record
dates of treatment with drug name dosages.
Also track onset, severity (0-10 scale), and relief
of any treatment-related symptoms. Share this information with
providers at each visit. Viewing a month or cycle at-a-glance
allows you to anticipate/identify a pattern as to when symptoms
may occur in later cycles and come up with a plan to minimize
issues proactively. This is also a great place to keep track
of testing/treatment appointments and who will assist with
transportation.
* Add pages or a tablet dedicated for taking notes at visits.
* Designate a caregiver or companion to be a scribe during
appointments so the patient can focus on what is being said
and can revisit the notes later to ensure nothing was missed.
* Keep a dedicated list of " questions to ask providers " as
they arise between visits. Before the next appointment,
put them in order of importance to ensure the most crucial
questions are answered in a timely manner. Use electronic
communication portals/e-charts to send questions to your
care team without having to wait until the next visit.
ENGAGE IN MEDICAL FINANCIAL TRACKING:
* Keep all treatment-related Estimation of
Benefits (EOB)/bills and payment receipts
in a single binder/electronic file.
* Record the names, and if possible, extension
numbers of service representatives at your care
facilities and at your insurance company.
* You can ask to be assigned to a specific representative and
communicate with them each time you have needs.
* Ask for meetings with a social worker, case manager, nurse
navigator, and/or financial counselor to get as much help
as you can with copay assistance/financial assistance programs
and benefits investigations.
* Keep receipts for lodging, dining, and transportation organized
for tax purposes, inform your tax professional of
your diagnosis and ask for advice on what is important for
your individual situation.
While these are just a few " action items " to help get you
started on this journey, I pray they help propel you or your
caregivers into action mode and enhance your ability to advocate
for the best possible cancer care experience! l
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
21
MY LIFE Matters - Advocacy in Action

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