Patient Representative

Definition

A health care patient representative is someone empowered to make or communicate health care decisions on behalf of an incompetent patient.

Description

The right of self determination lies at the center of our culture. Over several decades, legal precedents have established that individuals do not lose their right to self-determination if they become incompetent. A number of court cases have considered controversies over who should serve as incompetent patients' representatives and what level of evidence is required to present their wishes. Generally speaking, doctors and health care institutions presume that spouses and close family members are best situated and suited to convey and make decisions on behalf of incompetent patients. They best know their values and life goals, and could comfortably predict what they would want to happen to them. The process becomes more difficult when there is significant disagreement among family members or when there is no family available. Sometimes a court must step in to appoint and appoint a guardian to make health-care decisions, but Doctors and courts prefer to stay out of these personal matters. When faced with conflicts within families over what choices incompetent patients wouold make, courts sometimes consider the level of evidence favoring choices. These legal cases become of high-profile public interest, but do not settle the issues of what choice an incompetent patient would make if he could magically become competent long enough to fully understandand his circumstances, the available treatment choices, and have an opportunity to consider what best to do.

KEY TERMS

Advance directive —Living will. A document stating choices a patient would make in specific scenarios. The difficulty with living wills is that real-life situations seldom match up perfectly with imagined circumstances, so they are open to interpretation and controversy.

Durable power of attorney —In some states, Michigan, for example, Properly executed Durable Power of Attorney documents have the full weight of law. Patients name proxies or patient advocates to make any and all health-care related decisions when they are incompetent. These documents have specific requirements and patients must specifiy that their Advocates are empowered to discontinue life-sustaing treatments. Many do not fulfill all the requirements of the enabling legislation.

Caregiver concerns

Patients and families should have heart-to-heart and detailed conversations, preferably with notes, about the medical care they do and do not want when they are incompetent or facing death . When appropriate, a family spokespersons should be designated. Doctors and health care institutions want, need, and appreciate having clear direction coming from united families or, when that is not possible, to not have family conflicts spill over into medical care decision making.

Resources

BOOKS

Karlawish, Jason H.T., Bryan D. James. “Ethical Issues in Geriatric Medicine: Informed Consent, Surrogate Decision Making, and Advance care Planning,” in Hazzard, William R., et al., Eds. Principles of Geriatric Medicine and Gerontology. 5th ed. McGraw-Hill Companies, 2003, 353–360.

PERIODICALS

Ashley, Ruthe C. “Why Are Advance Directives Legally Important?” Critical Care Nurse (Aug. 2005):56.

Baldwin, MA. “Patient Advocacy: A Concept Analysis.” Nursing Standard (Feb. 5, 2003):33–39.

Church, Elizabeth J. “Patient Advocacy: The Technologist's Role.” Radiologic Technology (March/April 2004):272–292.

Goeltz, Roxanne J. “Be a Partner in Your Health Care.” FDA Consumer (May-June 2003):40.

Smith, Alison P. “Patient Advocacy: Roles for Nurses and Leaders.” Nursing Economics (March-April 2004):88–90.

Smith, Nick. “GP Business: New Patient Representation Forums Arrive.” GP (Dec. 1, 2003):22.

Stein, Patricia. “Pushing Through Barriers to Advocate for a Patient.” AORN Journal (Sept. 2004):553–558.

ORGANIZATIONS 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.

OTHER

About the Commission. What We Do. Web page. Commission for Patient and Public Involvement, 2005. http://www.cppih.org/about_what.html.

About Us. Web page. Consumers Advocating Patient Safety, 2005. http://www.patientsafety.org/aboutUs.htm.

Patient Representative Program Standards. Web page. Concordia Hospital, 2005. http://www.concordiahospital.mb.ca/quality.htm.

The Role of the Patient Advocate. Web Page. National Patient Safety Foundation, 1999. http://www.npsf.org.

To Err Is Human: Building a Safer Health System. Report. Institute of Medicine, 1999. http://www.iom.edu/report.asp?id=5575.

What Is Family-centered Care? Web Page. Institute for Family-Centered Care, 2005. http://www.familycenter-edcare.org/about_us/what-is-fcc.html.

Teresa G. Odle