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Nine tips
for patients
(This article was first printed in
the July 2004 issue of the Harvard Health
Letter. For more information or to order,
please go to www.health.harvard.edu/health.)
It’s no fun being a patient. You’re
sick or worried about being so. There’s
the loss of control to contend with as your illness
(and the health care system) seems to take over.
Even normally assertive and intelligent people
find themselves “shutting down,” so
they can’t understand new information or
think clearly about important decisions. Others
become irritable or downright hostile — not
a great mind-set for making medical decisions,
either.
On the bright side, patients now have more rights
than ever before. Most doctors today neither
want nor expect patients to passively follow
orders. And the Internet provides vast resources
to help you understand your condition and make
choices.
Earlier this year, Harvard Medical School sponsored
a forum titled “Taking Charge: Patient
Advocacy for Yourself or a Loved One.” Dr.
Nancy Keating, an internist at Brigham and Women’s
Hospital, and Dr. George Demetri, director of
the Center for Sarcoma and Bone Oncology at the
Dana-Farber Cancer Institute, led the discussion.
Here are nine suggestions that emerged from the
forum:
- Bring along a family member or close
friend. This is perhaps the single
most important piece of advice anyone can
give. Patients need a second pair of eyes
to look out for them and a second set of
ears both to hear their concerns and to listen
to the doctors and nurses. If you don’t
have anybody close by who can accompany you
in person, ask the doctor to list someone
in the medical record who should be called
before crucial decisions are made or after
something important has happened.
Incidentally, many doctors like patients bringing
a family member or friend along. It’s
helpful to them to have friends or family members
of the patient who can listen carefully and
perhaps help the person make important decisions.
Many people become calmer patients that way.
And doctors often pick up some insights into
the people they’re taking care of by
meeting family and friends.
- Talk to a nurse. Even if
we know better, some of us are a little too
eager to be good patients, so we don’t
complain or admit to having a problem. Others
may feel embarrassed at repeatedly asking, “What
does that mean?” Some find themselves
clamming up around authority figures. If you
don’t feel comfortable talking to a doctor,
seek out one of the doctor’s nurses or
some other staff member. It’s no secret
that patients confide in nurses and other staff.
Many doctors have found out more about their
patients from nurses than they’d ever
find out on their own.
- Know your options. Most
medical journeys have several crucial forks
in the road. If a doctor presents only one
choice, chances are you’re not getting
the full story. Of course doctors often do — and
should — make recommendations. If you
make a choice not favored by a doctor, then
you must decide whether that doctor can still
provide you with the care you need.
- Set the terms of the relationship.
A study published several years ago showed
that most patients want a collaborative relationship
with their doctor. But people’s preferences
vary. The researchers found that roughly 1
in 4 people prefer an active, take-charge role,
while 1 in 10 prefer a more passive one and
would rather defer to the doctor’s expertise.
But when researchers asked people how well
their preferences matched their actual experience,
only half said it was what they wanted. About
a quarter said they were relegated to a more
passive role than they desired, and a similar
percentage felt thrust into one that was too
active.
There’s a limit to how much any patient
can influence the dynamics of his or her relationship
with a doctor. But if you find your doctor
too bossy or too deferential, make that known.
If it continues to bother you, think about
switching doctors (see #9).
- Think through your priorities.
Treatments often involve trade-offs that only
you can sort out. Are you willing to go for
a potential cure even if it means harsh side
effects? Or are you more comfortable with a
conservative approach that has drawbacks but
also a well-established track record? As best
you can, express your thoughts to your doctors.
If they know about your values and preferences,
it can mean more fruitful and focused discussions
of treatment choices.
- Use the Internet. Sure,
the Internet is full of half-baked hokum and
untested snake oil. But today there’s
also plenty of credible health information,
so much so that it’s really a missed
opportunity not to get online and tap into
it. Harvard Medical School provides editorial
oversight of the Aetna InteliHealth site at http://www.intelihealth.com/.
The Web site for the National Institutes of
Health is a treasure trove with a great deal
written for the public. The federal government’s
National Library of Medicine offers PubMed,
a free, searchable database of all the medical
journals.
- Get your medical records.
Under the federal Health Insurance Portability
and Accountability Act (HIPAA), you have a
right to see and get copies of your medical
records. You’ll probably be charged for
the copies, so it can get expensive. HIPAA
also gives you the right to ask for changes
to your medical record, although doctors have
the final say-so over whether they’ll
be made. We’re not suggesting that everyone
run out and get copies of their medical records.
But getting acquainted with your official medical
biography can help you become a fully informed
patient.
- Bring a tape recorder to your office
visit. This may seem intrusive,
but — especially if you have a serious
medical condition like cancer or heart disease
that involves complicated treatment choices — listening
to an audiotape after your visit may help
you understand things you didn’t grasp
the first time around. Just refreshing your
memory can be helpful. Canadian researchers
published a study of audiotaping visits last
year in the Journal of Clinical Oncology.
They found that breast cancer patients who
listened to an audiotape of their first appointment
about chemotherapy had significantly better
recall of having discussed the side effects
than did patients who didn’t listen
to a tape.
- Find a doctor you like and respect. This
can be hard. Your health insurer may limit
your choices. For routine care, many people
want someone whose office is nearby. Good doctors
are often popular, so they may not be accepting
new patients. But especially if you have some
health problems, the value of compatibility
with your doctor is hard to overrate.
…and don’t feel obligated to stick
with one you don’t. It’s important
to make a good-faith effort to work with your
doctor — and it can be work. But don’t
settle for someone who you don’t like
or trust. It may not feel like a good match
from the doctor’s perspective, either.
You’d both be better off going your separate
ways.
(This article was first printed in
the July 2004 issue of the Harvard Health
Letter. For more information or to order,
please go to www.health.harvard.edu/health.)
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