Managing Your Own Health Care
You've got to be a savvy consumer to make sure your needs are met.
By June Isaacson Kailes
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 health.
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
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 case.
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
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.
I'm going to be OK, aren't I?
A question worded this way implies you may not want to know any bad news.
If you want honest opinions, ask open-ended questions.
What are the chances of my recovery? What's the outlook? My prognosis? What are the
implications of the treatment?
Never be afraid to say, "I'm having trouble understanding. Could you describe the
problem in plain terms?"
Don't pretend you understand if you don't.
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 opinion.
Sylvia Berta Alaniz was told she needed an ileostomy and, if she didn't do this, her
kidneys wouldn't hold out þ 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 opinion.
"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
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 to me?"
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 quickly.
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?
June Isaacson Kailes is a Disability Policy Consultant. This material is excerpted
from her book, "Be a Savvy Health Care Consumer, Your Life May Depend on It!"
What's your opinion?
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