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 long-term relationship.

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 your decision-making.

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.

Leading question:
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.

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 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 recommendations.

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!"

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