The ever-increasing complexity
of our medical system has made accessing quality health care very challenging.
This reality has given birth to a new field called independent patient advocacy.
Many people have heard of patient advocates but have only a vague idea of who
they are and what they do. Patient advocates are usually nurses, sometimes doctors, and,
occasionally, savvy individuals with no medical training but extensive personal
experience with the medical world. Having a patient advocate by your side
reduces the stress of a health crisis, at the very least, and can save your
life at the most.
I am a
patient advocate, and the following stories will give you an idea of what I do.
* * *
One evening a very
active, healthy, 89-year-old lady called me. “I’m not feeling well, but I don’t
want to call 911,” she said, sounding panicked. Within ten minutes, I was
there, holding the woman's hand, feeling her pulse, and talking to her to calm her
down. Noticing the very irregular heartbeat, I convinced the woman to allow me
to call the ambulance. I made sure to get in the ambulance with my client,
because if I followed by car, the hospital staff would not let me into the ER
until they were finished with the patient, leaving her distressed and alone as
she was questioned about her symptoms and medical history.
In the ambulance,
they ran an EKG, documenting a very erratic heart rhythm. Upon arrival at the
ER, however, the first EKG had already normalized. To rule out a heart attack,
she was admitted to the hospital for observation. All the tests came back
normal.
In the morning,
the new attending physician came in and found a shriveled 89-year-old lady in
the hospital bed; he had no knowledge of her impeccable physical health and
competence. The attending physician wanted her to stay for observation for as
long as necessary to rule out any possible abnormality. “She should get a
cardiology consult; wait for an endocrinology consult,” he told us. My thoughts
were different: This lady is in incredible health. Keeping her stationary and
alone in inpatient care for as long as it would take to cover all possible
medical bases would only put her in danger! The fact that her EKG results so
quickly leveled out showed that there was little likelihood of serious concern.
This lady needs to get back to her daily routine — an hour-long walk, raking
leaves for hours, as well as her cooking and cleaning!
After confirming
with the client, I respectfully approached the attending physician: “If the
patient sees her own cardiologist tomorrow, that would be okay, correct? And
the endocrinologist is not urgent. Then she doesn’t really have to stay in the
hospital any longer, right?” The physician agreed on all counts and discharged
her the same day.
During the
discharge procedure, I realized that tomorrow, the cardiologist would want to
see the abnormal EKG. Upon examining the discharge notes, however, this EKG was
nowhere to be found. I walked back to the ER and asked a nurse, who went into a
back room and returned with the EKG strip in hand!
I made sure to get
a next-day appointment with the cardiologist, who was very pleased: “You can’t
imagine how often I have no idea what actually happened in the ER!” he said.
“Now I’m able to have a clear understanding of the situation and adjust your
medications according to the EKG.” So off the lady went back to walking,
raking, and tending her beautiful garden.
* * *
A
sixty-seven-year-old gentleman had a mass growing in his abdomen. Investigation
at a university hospital resulted in the diagnosis of a specific lymphoma
(“blood cancer”). He was directed to begin a certain chemotherapy regime, and
consulted me for assistance. I delved into the medical literature and
discovered that his diagnosis had not been established by up-to-date means and
that the diagnosis needed refinement, with each subtype requiring a different
chemotherapy regime. I also realized that the patient was seeing a physician
who was not a specialist in this condition and that there was a more
specialized center within driving distance! I procured an urgent appointment at
that center, where the specialist confirmed my research and initiated the
appropriate diagnostic tests. The results showed a more aggressive subtype,
which necessitated a specifically tailored chemotherapy treatment. It was a
hard road, but the tumor responded well and he recovered completely, B”H.
* * *
A young man
suffering from stomach problems visited a gastroenterologist. His family engaged
a patient advocate to accompany him. After taking his medical history, the specialist suggested that he try a
newly-approved drug. Uncomfortable with this risky endeavor, the advocate
instead asked about a particular test that she thought might be helpful. “I
guess we can try it,” the gastroenterologist responded. In the end, this test
led to a diagnosis which steered the treatment in an entirely different
direction. Much needless suffering and risk was averted – not to speak of the
time and money saved.
Why
Engage a Patient Advocate?
Patient advocates who
specialize in medical navigation play a vital role in the following situations:
1) Undiagnosed conditions: An advocate can
help you choose a course of action in order to get answers.
2) Choosing the right center and physician:
Misdiagnoses of life-threatening conditions such as cancer are not uncommon.
Always get a second opinion from a specialist before embarking on an invasive
treatment. You might be comfortable with your doctor, but he or she might not
be a specialist in your condition. A patient advocate will help you find the best specialist and treatment center for you.
3) Decision support:
Once the diagnosis is confirmed, the doctor may offer different courses of
treatment. The patient advocate will help you sift through them and make
decisions.
4) Appointments:
During appointments – whether in person, via telehealth, or on
speakerphone during the appointment – a patient advocate helps you to get all your questions answered,
including answers to important questions you did not know to ask. Most
doctors are very cooperative, as having a knowledgeable
“care buddy” involved actually makes their job easier and more successful.
5) Representation
during a hospital stay: The medical world
is like a foreign country, and the hospitalized patient needs a guide and
translator, especially when a patient is
distressed and disoriented by the health crisis. The patient advocate lends a
competent voice, guided by the patient’s wishes and needs, influencing treatment
and care, leading to greatly improved outcomes for the patient and their family.
To
quote Dr. Ronnie Samet, anesthesiologist, UMD Shock Trauma Center, Baltimore:
“Patients who have a family member present or a patient advocate tend to do
better and get out of the hospital quicker.” A good patient advocate, who is at
home in that setting, very politely but confidently asks, negotiates, and
coordinates. They also alleviate much of the patient’s and family’s distress by
explaining what is happening and why. The Patient Advocate is competent,
supportive, and compassionate. He or she also has the presence of mind to think about
preventing excessive bills down the
road, while patients and family are distressed by illness.
6) Transitions of
care: Transitions of care, such as a
hospital discharge, are very problematic times when many moving parts can go
wrong. In the past, patients who got a new hip or had a breast removed were
kept in hospital care for at least a few days to supervise their recovery.
Nowadays they are usually sent home the same day. How is a person or family
without medical knowledge expected to cope? This situation requires proper
preparation and oversight in order to prevent and manage problems before they
escalate. The patient advocate will attend to details that the patient and
family might not know to ask about. As the above story illustrates, the patient
advocate ensures appropriate follow-up and that
the medical record is accurate and complete, allowing for seamless
continuity of care.
7) Assistance in
coordination of ongoing medical care and communication with providers:
Especially in the case of seniors and individuals with
disabilities, a patient advocate can help relieve caregivers of many of their
duties and provide them with peace of mind. The advocate can then catch
problems early, often preventing the need for hospitalization.
Conclusion
As a patient advocate, I and my fellow
professionals are guided by these three principles:
1) All medical treatment, including hospitalization, requires
a risk/benefit analysis, and should only be utilized when necessary.
In
addition, all medical care has to be modified to fit the individual patient’s
needs.
2) The
elderly need to be protected from over-testing. Any person who has reached such
a proud age is vulnerable in even “routine” testing. The question must be asked: “What is the benefit of this test for this patient?” Without suggesting any
malice, one has to keep in mind that the physicians’ and hospitals’
interests are skewed towards over-testing, which provides them with both
protection from litigation and greater profit.
3) The
patient’s autonomy is paramount. The providers are here to help patients
achieve their health goals. Although the patient enters the providers’ turf,
this turf should revolve around the patient’s needs.
Lea
Milgraum, M.D. is a professional board certified patient advocate. She received
her M.D. in Munich, Germany, in 1992, did a surgical internship in London, UK,
worked in pathology research at Johns Hopkins and completed one year of
residency in pathology at UMMC. While raising her four children, she qualified
for and worked as a therapeutic massage therapist, as well as a PA in
pathology. She is based in Silver Spring, MD and works with clients locally
and nationwide. Her website is www.harmonyadvocacy.com. She can be reached at HarmonyAdvocay@gmail.com or 301-980-3994.
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Frequently
Asked Questions about Patient Advocates
What
do patient advocates charge?
Fees vary and can be
negotiated. They usually range from $75 to $250/hour and are not covered by
insurance. An advocate can take an advisory role, explaining your rights
and guiding you on how to proceed at a very minor expense, or step in and take
a large burden of the advocacy off of you at the price of many more hours. Some
chesed organizations, such as Yad
Yehuda, might help with the fees in qualifying cases.
What else can patient advocates do besides
medical navigation?
Some patient advocates
specialize in medical billing issues. Medical financial issues come in many
forms: overbilling, surprise billing, and rejections by insurance
carriers. Once bills arrive, these advocates negotiate, appeal, and invoke
little-known laws to save their clients thousands of dollars.
Where
can I find a qualified patient advocate?
A
number of professional organizations provide directories:
?
www.advoconnection.com
?
www.nahac.com
?
www.healthadvocatex.org
?
www.gnanow.org (also has
informative videos)
?
www.pacboard.org/bcpa-certificant-list
Is there any other way to obtain advocacy?
Before
you hire a professional patient advocate, try these free resources:
?
Hospitals have patient
advocacy (or experience) departments. They also have a hospital social
worker assigned to each patient. Ask for the name and number of your social
worker.
?
Rabbi Pinchos
Rabinowitz, executive director of Bikur Cholim of Baltimore, is a patient
advocate. (See the video at www.baltimorebikurcholim.org/patient_advocacy). Bikur Cholim office: 410-999-3700.
?
Patient Advocacy
foundation (www.patientadvocate.org)
?
A number of Jewish
organizations, all in New York or Boston provide advocacy
(www.beineinu.org/orgenizations/medical-organizations/5344-organizations-in-the-usa)
?
Bikur Cholim of Greater
Washington provides subsidized patient advocacy in appropriate circumstances
(www.bikurcholimgw.org): 202-331-4481
Further
information: www.checkbook.org/washington-area/patient-advocates
