Patients’ Rights

September 21, 2011

The mystique of medicine and technology combined with an innate desire to maintain the well-being of our bodies has led us to grant a tremendous amount of power to both health care providers and the insurance industry. Health care providers carry an acquired knowledge of corporeal mechanics and the insurance industry holds the purse strings for health care spending. The patients who were the recipients of health care were left with little or no power to negotiate on their own behalf.

In 1972, I was witness to an example of this type of discrepancy in power. My position was that of a nurse’s aide on the maternity ward of a small hospital. One evening I was in the room of a patient who had been admitted for a cesarean section that had been scheduled for the following morning. While I was present, the obstetrician entered the room, greeted the patient, and began a discussion that led me to believe that she had been following the patient throughout the pregnancy. The physician then directed me to expose the woman’s abdomen in preparation for an examination. Once exposed, the very pregnant abdomen displayed two well-healed scars from previous surgical procedures. While looking at the scars, the physician said to the patient in a chastising tone, “what do you expect me to do with this?” as if to infer the surgical scars were an imposition. Without further comment, she (the physician) left the room. The patient was left lying in bed with a look that displayed some combination of horror, fear, embarrassment, and demoralization. I spent the remainder of the evening pondering over the patient’s situation and was much relieved the next day when I saw her with her newborn child.

This and other stories with similar themes reflect a violation of patients’ individual “rights.” But what is a “right”? According to Webster’s New Universal Unabridged Dictionary, a “right” can be defined as “… a just claim or title, whether legal, prescription or moral.” The American Civil Liberties Union (ACLU) states that “rights give us dignity and protection; if we have a right to something we can insist on it without embarrassment.” That patients have rights is surprising to some. The demanding force of the “baby boomer generation” has been instrumental in the establishment of rights to protect vulnerable citizens, including patients. Some patients have crossed an emotional line from being self-confident, independent persons to becoming dependent individuals who are at the mercy of the health care system. Patients have had little input into the framework and structure of the system they are now dependent on for delivering the remedies needed to reclaim their desired state of being.

In 1990, The Patient Self Determination Act was enacted as part of the Omnibus Budget Reconciliation Act of 1987. This law applies to all institutional providers that receive Medicare or Medicaid funding. The law is described in the text, Health Law. “The statute requires that each of those covered by the Act provide every patient with written information describing that person’s rights under state law ‘to make an informed decision concerning medical care, including the right to accept or refuse medical treatment or surgical treatment and the right to formulate advance directives’.”

The Patient Self Determination Act has placed the health care provider and the health care recipient in a face-to-face position to address issues that deal with the mandates of the patient. Patients have the opportunity to define their values (as they relate to medical care), their quality of life preferences, and to whom the patient will entrust the position of surrogate for health care decision-making.

To make well-informed decisions regarding one’s own health care, one must be knowledgeable about their own health issues. The major source of knowledge for a patient is the health care provider. The information that the health care provider has must be shared with the patient in language and at a level that the patient understands. This concept is the embodiment of the doctrine of informed consent. The importance and significance of this concept was stressed by The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions, “ethically valid consent is a process of shared decision making based upon mutual respect and participation, not a ritual to be equated with reciting the contents of a form that details the risks of particular treatments. Its foundation is the fundamental recognition that adults are entitled to accept or reject health care interventions on the basis of their own personal values and in furtherance of their own personal goals.” The American Hospital Association has developed a list of guidelines in support of patients’ rights. Many hospitals throughout the United States have implemented these guidelines as part of their standard of care. This document was recently revised and renamed “The Patient Care Partnership”.

Patients’ rights are extensive and announced, acknowledged, and explained in several laws, including. The Rights of Minors; The Americans with Disabilities Act; Title VII of the Civil Rights Act of 1964; The Rehabilitation Act of 1973; The Child Abuse Prevention and Treatment Act of 1974; The Public Health Service Act; The Uniform Determination of Death Act; and The Uniform Anatomical Gift Act. Under the Omnibus Budget Reconciliation Act of 1987, residents of long-term care facilities have listed among their rights the right to be free of physical and chemical restraints. This further reflects the multitude of rights that are in place to protect us as patients. An act that is currently being implemented is the

Health Insurance Portability and Accountability Act, also known as the HIPAA privacy rule. This rule defines how to use and disclose the personal health information of the patient. In addition, the rule contains regulations that all health care providers must follow in order to comply with the protection of patient privacy.

SEE ALSO: Confidentiality, Durable power of attorney for health care, Informed consent, Living wills, Medical malpractice, Quality of life

Suggested Reading

  • Annas, G. J. (1989). The rights of patients. The basic ACLU guide to patients rights. Carbondale: Southern Illinois University Press.
  • Fremgen, B. F. (2002). Medical law and ethics. Upper Saddle River, NJ: Prentice-Hall.
  • Furrow, B. R., et al. (Eds.). (2000). Health law (2nd ed.). Florence, KY: West.
  • Medicare and Medicaid programs: Survey certification and enforcement of skilled nursing facilities and nursing facilities—final rule. Federal Register, Vol. 59, November 10, 1994.

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