womens health

a d v e rt i s i n g s e c t i o n

How to
Be Your
Own
Health
Care
Advocate
Real advice about What it means and
how to do it well from experienced
local care coordinators and nurses.
By Amanda Lepinski

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Arm yourself with a

folder and a notebook.
Keep copies of all your records:
imaging reports, pathology reports,
business cards of people you talk to,
any forms youve signed, says Carol
Bergen, RN nurse navigator with
Consulting Radiologists Limited.
Have a place in the folder that you
can take notes or tuck away reports.
Getting yourself mentally and physically organized is helpful. Its also
important to write down any supplements or medications you take so your
doctor is aware at your appointments.

Dont forget to take

notes about your day.

Its the mantra heard around the medical world: Be your own health
care advocate. Doctors, nurses, magazines, even your friends whove
been through major illnesses or surgeries use it. Its a phrase that can
feel empowering. It can feel, perhaps, a little lonely. It can even feel
impossible, especially if youre facing a recent diagnosis of a serious
illness, or a major surgery that you know will change your life.
Our Twin Cities medical community is aware of all of these feelings.
Theyre experts in helping you wade through the ups and downs, and
teaching you to embrace the idea of advocating for your own health.
Weve asked care coordinators to dig into the phrase, to tell us what
it really means, and how we canin our scariest hoursbe the health
care advocate we need to be for ourselves.
Its not as hard as it feels.

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I am a huge advocate for diaries,

logging food, activity, blood sugar,
emotions, etc., Jennifer Jerde, RN
health navigator at Ridgeview Clinics,
says. The more information I can
learn about my patients, the more I
can help them improve their condition. While you may think a minor
symptom is trivial, telling your nurse
about it can alleviate the pain or even
change the course of treatment. For
instance, Dona Maki, care coordinator
for GYN Oncology at the University
of Minnesota, says that pinpointing a
problem can prompt a change in dose
or cycle of certain medications and
treatments: I tell patients to write
down if theyve had nauseawe know
exactly when that occurs in their treatment cycle.

Take someone with you.

Have another person attend all appointments with you so when youre feeling
overwhelmed, someone else is there
to take notes or ask questions. Some
patients are left with long-term illness.
Having people continuously be present
is so important, says Amy Edwards,
director of clinical integration, specialty
care, and the Piper Cancer Institute for
Allina Health. Its important for someone to be able to provide frank and honest information with and on behalf of
the patients. Letting physicians know
about any changes is key to getting
proper treatment during a medical

Keep copies of
all your records:
imaging reports,
pathology reports,
business cards of
people you talk to,
any forms you sign
. . . Getting yourself
mentally and
physically organized
is helpful.

crisis, and having another person at the

appointments ensures your best care,
especially if your health or your treatment is debilitating.

MAKE A GOAL.
Remember what is important to your
happiness, and make a plan with your
care team to make it happen. Let your
care team know whats important so
they can figure out a plan to get you
closer to doing the things that matter
most in your life versus just choosing
your meds, says Edwards. Looking
forward to what makes you happy will
help you on the road to recovery.

mspmag.com

Carol bERGEN, cONSULTING

rADIOLOGISTS LIMITED

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Have annual exams.

Annual exams and screenings are
wonderful preventative caretheyre
used to measure whats normal for
you and what isnt so you can monitor changes. The first line of defense
is preventionbe up to date on all of
your preventative care. Check the U.S.
Preventative Services Task Force to
see the guidelines for your age, says
Jeanine Rosner, director of clinical
projects for primary care at Park
Nicollet Health Services. Echoing
the sentiment, Jean Pupkes, an oncology clinical nurse specialist at North
Memorial Health Care, adds, Seeing
your doctor annually to get your cholesterol checked, female examinations,
colonoscopies, and other blood work
is really great. If you are or have ever
been a heavy smoker, get a chest CT at
age 55 to look for anything irregular.

Seeing your doctor

annually to get your
cholesterol checked,
female examinations,
colonoscopies, and
other blood work
is really great. If
you are or have
ever been a heavy
smoker, get a chest
ct at age 55 to
look for anything
irregular.

Make a care plan.

Having a plan in place for your care if
you are unable to make decisions, such
as in an accident or as you undergo
treatment, is a crucial step in tak-

ing control of your health. Arming

yourself with information and keeping
track of your progress will help you
feel empowered. How do you know
when youre on the right track? When
you start answering your own questions, you start to feel youre back
in control again, says Bergen. And
feeling empowered is what being your
own health care advocate is about.

Reduce your stress.

No matter your condition, reducing
stress allows your body to relax and
focus on healing. Bergen says, Reduce
stressful situations and eliminate
things that cause stress. Establish
connections with people or reinforce
your relationships with people who
are important to you. Get out and take
a walk with a friend, or if your energy
is low, find ways to socialize at home.
Keeping your social skills sharp and
learning new things will motivate you
to get and stay healthy. Having your
network with you will feed your soul.

Jean pupkes, NORTH MEMORIAL

HEALTH CARE

Being Cared For . . . After Youve Had Major Surgery

Amy Edwards, director of clinical integration, specialty care, and the Piper Cancer Institute for Allina Health says special
hospital-based care coordinators work with patients who are high-risk. In cases like strokes or heart attacks, these care coordinators
make sure home transition is done really well and that follow-ups with surgeon and primary care are scheduled right away. The goal:
Listen to what your medical team says, go to all follow-up appointments, and dont be afraid to reach out if something seems amiss.

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Some women dont

have good support
systems, so we find
support within the
community and get
them involved . . .
We have to teach
patients its ok to
put yourself first.
take that afternoon
nap if you need it.

Being Cared For . . . After a Serious Illness or Cancer

The most important thing is that patients understand their medication and have a
system in place to manage that, like a pill organizer, says Jennifer Jerde, RN health
navigator at Ridgeview Clinics. We also want to coordinate with specialists for
new conditions (after unexpected major surgeries) and keep track of any follow-up
testing. The goal: Stay organized and track your treatments, tests, and follow-ups.

Find support.
Accepting your condition and that you
may need help is part of the healing
process. Some women dont have a
good support system, so we find support within the community and get
them involved, but some women find
[their diagnosis and treatment] so
overwhelming that they dont process

the whole thing until theyre done

with treatment, says Maki. There
are resources for people who have difficulty preparing meals, and there are
people who come in to clean houses
so patients dont have to worry about
any of that. We have to teach patients
its OK to put yourself first. Take that
afternoon nap if you need it.

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Dona maki, gyn oncology at the

university of minnesota

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The Care Coordinator

Consider care coordinators and nurse navigators
the project managers of your health care,
helping you to help yourself through it all.
Care coordinators, sometimes
called nurse navigators, help you be
your own strongest health ally when
you go home.
Though the functions have been
around for decades, the titles of nurse
navigator and care coordinator are
relatively new, and the duties are
different than that of a traditional
nurse. Care coordinators partner
with the patient as more of a longterm relationship, says Amy Edwards,
director of clinical integration,
specialty care, and the Piper Cancer
Institute for Allina Health.
Nurse navigators/care coordinators
answer questions after treatment,
during therapy, or while taking
medications. When treatment is
complex or chronic, care coordinators
are especially helpful. They keep
close tabs on appointments, and
communicate vital information
about your health to physicians and
specialists. Having nurses more
involved on the clinical side and
being the point person for the bigger
picture of the patient has been helpful
in decreasing the fragmentation of
care, says Jeanine Rosner, director

of clinical projects for primary care at

Park Nicollet Health Services.
Care coordinators also act as
translators, conveying information
about your condition to you from a
variety of health care providers. They
can help find balance between what
a physician recommends and what
the patient wants. Nurses are very
strong in education about prevention
and self-management, says Rosner.
Mary Haugen, director of nursing,
ambulatory surgery center, and the
pain program at TRIA Orthopaedic
Center, says, Nurses work to create
a holistic plan of carelooking at the
whole person and not the illness.
Coordinating care can ease
anxiety and stress, especially if you
have a health emergency out of
state, or a complicated insurance
situation. Jean Pupkes, an oncology
clinical nurse specialist at North
Memorial Health Care, remembers
a patient visiting Minnesota who
was diagnosed with cancer. I spoke
to the patient, her oncologist, and
went in with a book about ovarian
cancer and all the paperwork about
the treatments, Pupkes says. Her job

To see someone fully activated and engaged

in their own health and/or chronic illness
makes me believe we are doing the right thing.
The trust that is developed in the relationship
between a patient and an RN health navigator is
very powerful.
Jennifer Jerde, Ridgeview Clinics

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Nurses are
very strong in
education about
prevention and
self-management.
Nurses work to
create a holistic
plan of care
looking at the
whole person and
not the illness.
mary haugen, tria
orthopaedic center

also required additional research. I

talked to different resources like the
Minnesota Ovarian Cancer Alliance
about financial resources because her
insurance was out of state and we
were having difficulty.
In essence, its what nursing is
all aboutgiving care, however
the patient needs it. The most
rewarding part of being a nurse
navigator is seeing a patient
transition in front of you on their own
terms, their own way, on their own
path. To see someone fully activated
and engaged in their own health and/
or chronic illness makes me believe
we are doing the right thing, says
Jennifer Jerde, RN health navigator
at Ridgeview Clinics. The trust
that is developed in the relationship
between a patient and an RN health
navigator is very powerful.

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How to
Care for
Someone
Else
Be supportive. Show love in a way
you know your partner appreciates.
The husband of one of my patients
told me, I dont know what to say to
my wife because its not me whose
role is changing or me that has to go
through surgery, but I do know she
likes to have her hair brushed, says
Carol Bergen, RN nurse navigator
with Consulting Radiologists
Limited. He said, In the evenings
when the kids are in bed, I ask her
to come over to me. She sits on the
floor and I brush her hair, and she
reaches her hand up and we hold
hands for a minute. And that says it
all. Its his way of showing support
to his wife.
Be present at appointments. Your
presence will show your support and
solidify your relationship with the
care team so you can be a voice for
your loved one. It helps if you and
your loved one can be clear with the
care team about who is responsible
for communication. Make sure
the care team understands who the
point person is. Many patients have
conditions that arent always visible,
like dementia, so knowing who we
should call is important if it is not
the patient, says Jeanine Rosner,
director of clinical projects for
primary care at Park Nicollet Health
Services.
Take care of yourself. You cant be
a good caregiver to someone else
if youre exhausted or unhealthy.
Caregivers have to take care of
themselves too, and know when
to ask for help, Jennifer Jerde,
RN health navigator at Ridgeview
Clinics, says. Dont be afraid to ask
friends or family to cook a meal
or pick up the kids from school.
Nurse navigators can also be great
resources for caregivers who need
advice finding help.

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