Active Consumers

are active and assertive, not passive

select providers who will listen

select providers who will involve you fully in decisions

learn as much as possible about your health conditions and periodically seek updated information

are comfortable asking questions and expressing concerns

are not embarrassed at stopping providers if they are not communicating clearly or are using highly technical terms

ask providers to explain things in plain language

want and expect to work in partnership with providers in shared decision making:

developing effective intervention and treatment plans

sharing responsibility for choosing between options and alternatives

using strategies that include understanding their condition, adopting practices that prevent or minimize complications, and using resources and assistive technology

learn about their health insurance benefits and requirements for coverage

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

worry that their health care will be compromised if they ask questions or disagree

In a few limited situations, even an active person must take a passive approach. For example, in emergencies, you may need a provider to make split-second decisions.

ACTIVE VERSUS PASSIVE CONSUMERS

Today's health care environment is also undergoing massive and rapid change that is having far-reaching effects on all consumers. Therefore as we experience a leaner and meaner health care system, it is more important than ever before that we sharpen our self-preservation and self-advocacy skills. Developing these skills may seem overwhelming at first, but they can be mastered in small pieces. And it is worth the effort, because utilizing these skills may save your life.

The time has come for providers, especially doctors, to stop playing God and for individuals to stop worshiping them. Providers deserve respect, not worship! In today's rapidly changing health care environment, the old "doctor knows best" attitude is disappearing fast. People are finding they must learn how to be effective advocates or they may have to do without essential care. Being passive can be dangerous to your health.

Speaking out may sometimes be the only thing that keeps you from an unnecessary procedure or operation, a mistaken treatment, adverse drug reaction or potential ongoing problem. Ultimately you and you alone are responsible for managing your own health. Research confirms that people who are more active in their relationships with their physicians have more positive results. People who communicate well with doctors benefit medically and emotionally. They are found to be physically healthier, recover faster and are better able to tolerate stress and pain (Miller, p. 4).

Become informed and stand up for yourself. Use health professionals as consultants rather than as gods. They have knowledge about the ‘science' of body and psyche, but you are the only one who is an expert on you ....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."

Health care consumers have to take back control they may have given to providers. You have the right and the responsibility to speak up. 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. It's your health and your right to be involved in every decision. Savvy consumers take responsibility for their health, are co-managers in their health care and share in the decision making process.

When seeking health services, an informed, empowered, assertive approach is key. You should bring your dignity and your advocacy skills with you. Self-confidence is important, that is, a belief that you can manage your medical issues. Self-confidence and assertiveness make things easier.

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.

Sylvia Berta Alaniz was told she needed an ileostomy and, if she didn't do this, her kidneys wouldn't hold out, and she would die within two years. She got a second opinion by asking a staff radiologist what he thought. He told that 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 (January/February 1988 Disability Rag)."

A fairly typical problem is providers who fail to physically evaluate individuals out of their wheelchairs. Take the example of Fred, a wheelchair user, who, with help, can stand and walk a few steps. The first time he had a physical with a new doctor, the doctor never had him get out of his chair. He assumed Fred could not get up and Fred felt too intimidated to suggest that the doctor do the examination differently. If the doctor had asked Fred to get out of his chair, Fred could have received a more comprehensive and complete physical exam.

Nobody can make you feel inferior but yourself. Eleanor Roosevelt

Believe in and have confidence in your own experience. Don't be intimidated by credentials and degrees! You don't have to be a rocket scientist to be a partner in your health care. Your personal experience is what is key, what is unique.

Be aware, assuming a "sick role" because you are called a "patient" may be damaging to you. A sick role has connotations which disempower people. The role connotes that people should be told what to do, cared for and passively wait to get help. While sometimes this is inevitable, it can also lengthen treatment time and create an unhealthy dependence on others. The threat of loss of independence and control imposed by some condescending, patronizing, paternalistic and/or overly concerned health care provider attitudes requires people to develop assertiveness and an active approach in a sometimes hostile and negative environment.

Savvy consumers take responsibility for their health, are co-managers in their health care and share in the decision-making process.

Miller, Marc, ed., 1995. Health Care Choices for Today's Consumer,

Families USA Guide to Quality and Cost. Living Planet Press, Washington. DC.

Return to Resources on Managed Care for People with Disabilities

Source: Copyright © 1998 Be a Savvy Health Care Consumer, Your Life May Depend on It! by June Isaacson Kailes, Disability Policy Consultant. For nformation on ordering this guide, contact the author at jik@pacbell.net or write to KAILES - Publications, 6201 Ocean Front Walk, Suite 2, Playa del Rey, CA 90293, or visit /resource.html