Patient representation is the involvement of an individual or group to protect the best interests of the patient in the medical system.
Many definitions are offered for patient representation, ranging from one individual acting as a guardian or liaison for an individual patient to organized groups within hospitals and society that campaign for preservation of patient's rights and improved patient safety. Patient representation also may be called patient advocacy.
In the past, patients often followed any advice given by the physician and asked no questions. Many events have changed this way of thinking. Some of the suggested causes for change are managed care, consumers who are more well informed due to available information from the Internet and other sources, and increased concern about medical errors. The 1997 Convention on Human Rights and Biomedicine saw respect for a patient's autonomy as key to supporting patient's human rights within the health care context. In 1999, the Institute of Medicine released a report titled To Err Is Human: Building a Safer Health Care System. The report included findings that at least 44,000 people, and as many as 98,000 people, die in hospitals each year as a result of medical errors.
Many health care institutions have created patient representatives to serve as liaisons between patients and family members and the institution's staff. They may help ensure timely investigation of complaints and oversee quality improvement activities. In other institutions, patient representation is considered a new way of thinking as providers are educated on concepts such as "patient-centered care.". Some adopt a "Patient's Bill of Rights," which reminds staff of their responsibilities regarding patient interests and rights. A formal bill of the same name was introduced into the U.S. Senate in 2004 in an attempt to advance rights of enrollees in managed care plans. Educating providers about compassionate care, cultural competency, and speaking out for patients has been emphasized more in recent years as part of patient representation.
The 2005 case of Terri Schiavo, in which the woman with brain damage had failed to put her wishes concerning end-of-life decisions in writing, led to extended court battles between family members and international attention. It also has increased emphasis on advance directives and durable powers of attorney. When a patient does not express his or her wishes with advance directives, a patient guardian or advocate often is appointed to act on behalf of the patient as an intermediary between health care providers and even family members.
Informed consent is an example of formal, required patient representation. It is a process of informing patients of medical procedure risks.
In the United States and other countries, councils, organizations, and local efforts continue to form to address issues related to patient safety, autonomy, end-of-life matters, and disease-specific advocacy. Whether patient representation is formal, informal, individual or collective, it is an important emerging development in health care.
Advance directive— A legal document that guides health care decisions if a person becomes incapable of making the decisions. It also may be called a living will.
Advocacy— Working or pleading on behalf of another, seeing people as individuals, protecting their dignity, privacy, and respecting their choices.
Durable power of attorney— Also called a health care proxy, it is a person designated to make decisions on behalf of a patient in the event the patient is incapable of making decisions; the power of attorney is designated in writing.
Some traditional physicians and those involved in the medical ethics debate may argue that physicians still know what is best for the patient and that sometimes it is more kind to withhold information, such as when a patient is dying. However, people involved in advocating for patients believe that while empathy and compassion are important, commitment to the truth is equally important. Proponents of patient advocacy and patient-centered care say that the benefits are numerous to the patient, who will feel empowered. But they say it also benefits the provider to work in cooperation with an informed patient. Patient advocacy may reduce legal risks and litigation, improve job satisfaction for health care professionals, and improve overall quality of medicine.
When an individual health care professional serves in the role of patient representative, he or she often feels "caught in the middle." Being an advocate for patients carries an inherent risk of confronting other parties within a facility or the medical field. For example, a nurse who serves as patient representative in her hospital may have to confront a physician concerning a patient's complaints.
For health care professionals who take a more patient-centered approach, advocating for patients brings many benefits, including job satisfaction and improved patient care. However, the staff member who speaks up about problems within a health care institution that negatively affects one or all patients may feel threatened unless the entire organization adopts a "patient first" attitude. In the broadest sense, patient representation may change how some providers interact with patients, eventually leading to improved patient care, outcomes, and patient safety throughout society as advocacy organizations work as a collective voice to improve the patient experience.
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Consumers Advancing Patient Safety. One W. Superior Street, Suite 2410, Chicago, IL 60610. (312) 274-1301. http://www.patientsafety.org.
Institute for Family-Centered Care. 7900 Wisconsin Ave., Suite 405, Bethesda, MD 20814. (301) 652-0281. http://www.familycenteredcare.org.
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