A Patient's Right to Know
The Denver Post
January 21, 2001

Sometimes it's scary to be a mom. Last week, my daughter had her hip replaced. As the two-hour surgery stretched to three hours, I started to imagine all the awful things that could have happened to her. I wondered why no one had let me know anything. I was so grateful when the surgical nurse called to tell me everything was OK.

My son's back surgery also lasted hours longer than expected. I was panicked. Luckily for me, a nurse came to tell me the surgery was going well. A neighbor who is an anesthesiologist checked on my son and reported back. Those little bits of information were so important to me. They relieved my anxiety. They should be available to everyone involved in the health care process.

My daughter received wonderful care at Los Angeles' Orthopedic Hospital, near where she lives. Because the hospital is located in the heart of Los Angeles, many of its patients speak Spanish. Most of the staff is bilingual. All printed communications, signs and instructions are in Spanish and English. Every patient received the same care, complete information and assistance my daughter received, delivered in the language the patient could understand.

The surgeon who replaced my daughter's hip spent 45 minutes with her just before her surgery, going over some potential risks he'd read about the week-end before. He'd already spent a lot of time discussing the surgery with her, but he wanted her to have every piece of information he could provide, even at this late moment.

Physical therapists and nurses reviewed medications and care instructions many times. They watched closely as my daughter got used to her crutches, dressed herself and moved about the room, making sure she understood precisely what she could and could not do, what was safe and what wasn't. They described in detail how to take care of her incision, how she would feel over the next few weeks, what danger signs to look for.

Providing all this information takes time. And time is what our modern health care system often doesn't have, either because hospitals and clinics are understaffed or doctors and nurses are urged to see more patients and be more cost-effective. But having all the information that will help patients make good decisions and take responsibility for their own care is what is most cost-effective. To be of maximum value, this information needs to be provided in a way that patients can understand, whether that's another language, demonstrations, videos or tapes and CD's.

Our health care system is often intimidating. If you're poor or sick or fearful, you may not seek the care you need until it is very late and very expensive. When we call our doctor's office or health insurer and get some cold, aloof or rude respondent, many of us don't call back, even if we need answers or care. Or we don't ask all the questions we should, afraid we'll be offensive or take too much of someone's time.

The health care system should be anything but intimidating. It should be one of society's most welcoming institutions. It should openly and willingly provide all the information we need. It should always offer, as much of the system does now, options for care and advice and help in living healthier lives. It should ensure we get the time we need with health care professionals to get our questions answered and our needs met.

We hear about doctors being muzzled by HMO's who don't want patients to know about more expensive drugs or procedures. There are too many stories of patients not knowing all their treatment options or all the risks of a particular therapy. Ultimately, this will cost the health care system more, whether it's in lawsuits or repairing damage or patient rage. Our health care system suffers greatly from widespread distrust, precisely because patients don't believe they're getting reliable and complete information.

Whether it's patients fighting illness or families in the waiting room, information relieves anxiety and improves health care. It should always be forthcoming and complete.