News and Information from the Health and Wellness Division of Blindness Support Services - Riverside, California
Your Own Health Care
This material is excerpted from the book, "Be a Savvy Health Care Consumer, Your Life May Depend on It!", by June Isaacson Kailes. June Isaacson Kailes is a Disability Policy Consultant.
to be a savvy consumer to make sure your needs are met.
Finding your way safely through the
increasingly complex health care jungle is never easy, especially if you
are sick. It can be a tricky and pressure-filled business, but there are
ways to protect yourself.
The most important thing to recognize
is that ultimately you and you alone are responsible for managing your own
As a friend Darrell Jones put it,
"I finally began to apply to myself what I had been preaching to the
disabled community in my work: take back your power, become informed and
stand up for yourself. I learned how to use health professionals as
consultants rather than as gods. They have knowledge about the `science'
of body and psyche, but I am the only one who is an expert on me....To
heal, or become whole, is not the same as being cured. A cure comes from
outside of ourselves. Healing is something that occurs within. And being
healed may not mean that we are cured. It may simply mean that we reach a
state of empowerment, self-love and skilled self-care."
Getting the most out of health care
services requires you to be active and vocal in all aspects of health
care. You need to see yourself as a customer who is purchasing services
from health care providers. Being prepared and having faith in your life
experience and your common sense will help you avoid feeling intimidated
by places and providers who may appear cold and distant.
Health care providers are not free of
the common negative stereotypes of disability which cause the
discrimination, environmental and attitudinal barriers that people with
disabilities encounter daily. People working in medical settings reinforce
these stereotypes, often because they are only exposed to people with
disabilities who are indeed sick. In addition, medical students report
there is practically nothing taught about disability during their four
years in medical school.
Researcher Peg Nosek writes that the
stereotype of infirmity, sick people in wheelchairs covered with blankets,
haunts people with disabilities. Curious new acquaintances or health
providers will ask, "When did you first get sick?" Instead of
asking, "How are you doing?" people with disabilities often get
asked, "How are you feeling?" Even in those situations where
people are experiencing poor health, chronic fatigue or pain, they don't
want to be asked how they feel all the time.
A provider who equates difference
with dysfunction invalidates people with disabilities. But you can
increase your chances for quality care by establishing a long-term
Be aware that assuming a "sick
role" because you are called a "patient" may be damaging to
you. Passive consumers want providers to take charge of their health, rely
totally on providers' advice, do not ask questions, offer information only
when asked, are complacent and have a fatalistic "what will be, will
be" attitude, are not interested in thinking about options, are
hesitant to disagree with or confront their providers, often feel helpless
and lost in the health care system, and worry that their health care will
be compromised if they ask questions or disagree.
In fact, though, research confirms
that people who are more active in their relationships with their
physicians have more positive results.
As providers get to know you, they're
able to see you as an individual rather than a textbook or theoretical
But expect that providers will not
know everything they need to regarding your condition or disability. The
information explosion in health care makes it difficult to keep current.
Providers cannot be experts on everything. This, plus the fact your
condition or disability often represents a very small percentage of a
provider's practice, means it is very important you educate yourself and
then your providers.
Being informed about the health
conditions that most concern your life helps you participate on a more
equal basis in medical-care decisions and improves the quality of your
If you feel intimidated,
uncomfortable or forget to ask questions when you visit a provider, you
are not alone. Visiting a provider can be highly stressful. For instance,
you are usually partially or totally undressed while the provider usually
is dressed in authoritarian type clothes (white coats). You also may be
worried about the reason for your visit to the provider.
Consider bringing an advocate/friend
who can listen, take notes, and help ask questions. This strategy is
especially important if you tend to forget your questions, freeze or
become less effective as a self-advocate when dealing with health issues.
This is common and is sometimes due to prior history and experience with
the health care system. If you take advocates as support people:
Ask them to support and assist you
but not to take over. Choose a support person who has the skill to think
objectively; is able to listen and remember accurately; and who can offer
you emotional support.
Take notes. "The faintest ink is
more accurate than the strongest memory." During an appointment, take
notes on important information. At the end of a visit, always check your
understanding by briefly repeating what you heard the provider say.
Consider bringing a tape recorder if
you don't want to worry about taking notes or remembering what was said.
Ask open-ended questions. Avoid
leading questions. Leading questions can force providers to give the
answer you want even if it's not true.
A question worded this way implies
you may not want to know any bad news.
If you want honest opinions, ask
Never be afraid to say, "I'm
having trouble understanding. Could you describe the problem in plain
Don't pretend you understand if you
Sometimes what you hear may surprise,
shock or upset you. Don't hesitate to ask for more time to make a decision
that could affect your life. Ask how much time you can take for making a
decision without endangering effective treatment.
Always consider getting a second
Sylvia Berta Alaniz was told she
needed an ileostomy and, if she didn't do this, her kidneys wouldn't hold
causing death within two years. She got a second opinion by asking
a staff radiologist what he thought. He told her her kidneys were in great
shape. The next day, she checked out of the hospital and made an
appointment with a well-known urologist who supported the radiologist's
"I spoke up for myself 15 years
ago and I'm glad I did it. Speaking up may be the only thing that keeps us
from the unnecessary operation. After my experience in speaking up for
myself, I found I became a stronger person. I've become more conscious of
controlling my own health decisions. After all, it is my body. Speaking up
is the most powerful tool we have for protecting ourselves, and protecting
the way we want to live our lives."
People often hesitate to get a second
opinion. It's your health; get one if you think you need one. Especially
when: you feel uncomfortable with your provider or the treatment
recommendations, you feel what you are being told isn't logical or isn't
right for you, you are concerned about a procedure (especially a surgical
one), or your provider isn't sure or doesn't seem to know. Or, if you are
dealing with a life-threatening condition or risk of increased disability.
When the second opinion differs from
the first, you may feel justifiably confused and decide you want a third
opinion. Get one or use a trusted provider to review the differing
Caution: Sometimes second opinions
can be biased. Providers frequently refer people to specialists who share
their same philosophy and approach. Be aware of the possibility a provider
will satisfy your request for a second opinion while validating his or her
own assessment by choosing a consultant likely to share the same bias.
If you have a specific or new
condition and you're not sure who to see, research suggests primary care
physicians are generally a good place to start. You can work with this
provider in deciding when it may be appropriate to see a specialist.
Sometimes, when you start with a specialist, they search for the problem
they expect to find, often ignoring alternative diagnoses.
In regard to specialists, there are
some additional considerations for people with disabilities. The advice
and opinions people with disabilities get for everyday conditions are
often not put through a "disability filter." For some this can
be extremely problematic. A common question is "will I get
disability-aware information or just the stuff that doesn't really apply
For example, a man with a spinal cord
injury, employed and living independently in the community noticed a small
skin breakdown on his back. He went to his primary care physician, a
general practitioner who was the gatekeeper to specialist care -- that is,
the HMO's person designated to keep costs down for his health plan. The
doctor treated the man with medication, covered the breakdown and sent him
home. The dressing was the wrong type, causing further breakdown and,
three days later, the man had a massive infection and had to be rushed to
the emergency room. The condition then required acute care and a long
period of bed rest. Even after months of treatment, he had trouble.
Had he been referred to a specialist
in spinal cord injury or had this gatekeeper possessed the proper
disability knowledge or been able to call in a specialist, this fellow
could have been treated appropriately and the condition would have healed
Since providers practicing in
rehabilitation settings tend to have a stronger knowledge base related to
health needs of people with disabilities, they may be, in some situations,
the better choice for who should provide primary health services and be
the primary care provider for people with disabilities. These specialists
are typically experienced and interested in disability-related issues.
Being a savvy health care consumer
does take time and planning. If you do not follow any of these visit
strategies, at least remember this þ you have the right and
responsibility to ask: Why? Why not? What? How? When?
a Savvy Health Care Consumer, Your Life May Depend on It! By June Isaacson
Kailes, 6201 Ocean Front Walk, Suite 2, Playa del Rey, California
90293-7556, tel: (310) 821-7080, fax: (310) 827-0269, email: firstname.lastname@example.org