Of all the forms of inequality, injustice in health care is the most shocking and inhumane. ~Martin Luther King, Jr.
Years back, the Los Angeles police department videotaped ambulance companies leaving ill patients in Skid Row. A representative from the ambulance company reported that hospital officials ask them to do this on a regular basis. Many of the patients who were dumped were homeless. A local council member spotted an obviously sick patient, dressed in a hospital gown, pushing a walker down the streets.
The violation of patients’ rights is an indefensible reality. When we are sick, we are vulnerable. It is a basic human need to expect others to care for us when we are ill. However, these are expectations that are not always met. Sometimes the people we trust our health with, do not live up to this trust.
How should you expect to be treated by your medical provider? What are your rights? There is not a simple answer to this question. In 1997, President Clinton appointed a commission to develop a plan to protect medical consumers. Since 2001, there have been a number of bipartisan attempts to pass legislation that would provide greater protection for patients. To date, no federal Patients’ Bill of Rights has passed the legislative and executive process.
Patients do have some protection. Nurses, physicians, and surgeons have codes of ethics to follow. Patients have very clear rights when using hospitals and skilled nursing facilities. Some states, such as California and New York, have based Patients’ Rights Bills. Various professional organizations prescribe patients’ rights, such as the American Psychiatric Association and the Joint Commission on Accreditation of Healthcare Organizations.
Before any surgical procedure, you should be informed about the risks prior to consenting to the procedure. This is known as informed consent. All the risks should be listed, even if they are unlikely to occur. It may be frightening to read this information, so ask the doctor or nurse to be specific about the risk. For instance, it is scary to read that one of the risks of liver biopsy is death. However, when told that this occurs in 3 out of 10,000 procedures, this risk does not seem as frightening. If you are healthy, had the necessary lab work, and have an experienced physician, this risk is even less.
Patients have clear rights regarding the handling of healthcare information. Under the Health Insurance Portability and Accountability Act (HIPAA), you have the right to privacy and access to your medical information. You have the right to be notified when your information is being shared, to whom it is being shared with and in certain cases, the power to decide if the information may be shared. You have the right to make corrections to your medical information and to file complaints if any of these rights are violated.
If you participate in any clinical research, your rights are highly protected. Before a clinical trial can begin, it must meet the strict set of standards required by the U.S. Food and Drug Administration (FDA). Additionally, an independent review board must approve every trial before human subjects can be enrolled. This board is comprised of people from many disciplines – doctors, scientists, pharmacists, nurses, and non-scientist community representatives such as attorneys, clergy or lay people. Clinical trials are reviewed throughout the course of the study, and all people associated with the trial are required to keep records long after the study has ended. Participants must be informed of their rights, including the right to drop out of a study for any reason without influencing their subsequent medical care.
If you feel your rights have been violated, there is always recourse. Talk to your insurance company, state insurance commissioner, medical society, or hospital ombudsperson. Keep talking until you get your concerns addresses.