Occasionally, we’ll here a news story documentary a violation of a patient’s rights. Some of us may have been mistreated or are closely associated with someone who has. The violation of patients’ rights is a sad and 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.
I believe these violations are uncommon, most likely the consequence of an overburdened, understaffed health care system. When under stress, human beings cut corners. The amount and quality of time spent with patients may be compromised. We might not act as compassionately as we feel. Our actions may not mirror our intentions. We may make mistakes.
This does not justify unethical behavior. Patients always have the right to be treated humanely. However, I think it is important to understand the reality of modern health care. As patients, perhaps we can adapt to it without sacrificing good medicine.
The keys to navigating the health care system seem to be persistence, good communication and self-advocacy. As in life, the “squeaky wheel” does get the grease. If you need something from your medical provider’s office, such as a test result, keep calling until you get the result. Do not drop the ball. However, do this in a friendly, polite manner. A polite squeaky wheel makes more friends than someone who is rude. Friends are good to have when you need help.
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. Some federal protection for patients finally came into effect under President Obama’s Affordable Care Act. You can read them here.
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 also 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. Additionally, you have the right to make corrections to your medical information and to file complaints if any of these rights are violated.
In addition to the protection under HIPAA and the Affordable Care Act, all patients have the right to informed consent. 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.
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. Patients who receive Medicare also have certain rights.
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.
We are vulnerable when we are sick. If you think your rights have been violated, contact one of the agencies mentioned in this article, the American Medical Association, your healthcare system’s patient rights department, your insurance company, or an attorney.