Eye on Ethics
The Complexities of Informed Consent
Alex C. enters the emergency department of the small community hospital complaining of intense stomach pain. He is interviewed by the triage nurse and waits to see a doctor. The triage nurse contacts the hospital social worker, Marcia, and tells her that Alex seems “somewhat disoriented” and “doesn’t understand English very well.”
Marcia interviews Alex and learns that he is an active client with a local community mental health center. According to Alex, he immigrated to the United States in 1994 from the Dominican Republic and has been receiving psychiatric and supportive services “for years—my mind doesn’t work right.”
Marcia wants to obtain Alex’s consent to contact the local community mental health center, both to obtain information about his psychiatric needs and to provide information about his current medical circumstances. However, Marcia questions Alex’s ability to understand what she is asking and the information provided on the hospital’s release-of-information form.
The concept of informed consent has always been prominent in social work. Consistent with social workers’ longstanding embrace of the principle of client self-determination, informed consent procedures require social workers to obtain clients’ permission before releasing confidential information to third parties; allowing clients to be photographed, videotaped, or audiotaped by the media, professionals, or other parties; permitting clients to participate in treatment programs; or permitting clients to participate as subjects in research or evaluation projects (see standards 1.03 [a-f] and 5.02 [e-h] in the National Association of Social Workers’ Code of Ethics).
The historical roots of informed consent have been traced to Plato, who in Laws compares the coercive Greek slave-physician with the free physician who “takes the patient and his family into confidence … [and] does not give prescriptions until he has won the patient’s support.” The medieval French surgeon Henri de Mondeville also stressed the importance of obtaining a patient’s consent. By the late 18th century, European and American physicians and scientists had begun to develop a tradition that encouraged professionals to share information and decision making with clients.
The first major legal ruling in the United States on informed consent was in the 1914 landmark case of Schloendorff v. Society of New York Hospital, in which Judge Benjamin Cardozo expressed his oft-cited opinion concerning an individual’s right to self-determination: “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.” The phrase informed consent was introduced in the 1957 court case of Salgo v. Leland Stanford Jr. University Board of Trustees. The plaintiff in this case, who became paraplegic following a procedure for a circulatory problem, alleged that his physician did not properly disclose ahead of time essential information concerning risks.
Although the concept of informed consent originates in medicine and healthcare, it has widespread relevance in social work. Unique informed consent issues arise when social workers deliver services to people including children, older adults, people with mental illness and physical challenges, nursing home residents and hospital patients, or prison inmates. For example, social workers who serve children must keep pace with various informed consent guidelines and requirements concerning minors’ right to obtain substance-abuse treatment, mental health services, or contraception without parental notification. Social workers in healthcare settings—such as hospitals, rehabilitation facilities, nursing homes, hospice programs, and home-health agencies—must be familiar with informed consent requirements concerning patients’ right to consent to and refuse treatment and participate in experimental research protocols.
State and federal laws and regulations vary in interpretations and applications of informed consent standards. In general, professionals agree that the following standards must be met for consent to be considered valid:
1. Coercion and undue influence must not have played a role in the client’s decision. Social workers often maintain some degree of control over clients’ lives (eg, by approving benefits, admission into programs, and the termination of services). Practitioners must ensure that clients do not feel pressured to grant consent.
2. A client must be mentally capable of providing consent. Clearly, some clients (eg, young children and individuals who suffer from serious mental illness or dementia) are unable to comprehend the consent procedure. Other clients, however, may be only temporarily unable to consent, such as individuals who are under the influence of alcohol or other drugs at the time consent is sought or who experience transient psychotic symptoms. In general, social workers should assess clients’ ability to reason and make informed choices, comprehend relevant facts and retain this information, appreciate current circumstances, and communicate wishes. Clients who are unable to consent at a given moment may be able to consent in the future if the incapacity is temporary.
3. Consent forms and procedures must be valid. Social workers sometimes present clients with general, broadly worded consent forms that may violate clients’ right to be informed and may be considered invalid if challenged in a court of law.
Social workers should include details that refer to specific activities, information to be released, or interventions. Typical elements include details of the nature and purpose of a service or disclosure of information; advantages and disadvantages of an intervention; substantial or possible risks to clients, if any; potential effects on clients’ families, jobs, social activities, and other important aspects of their lives; alternatives to the proposed intervention or disclosure; and anticipated costs for clients. All of this information should be presented to clients in clear, understandable language and in a manner that encourages clients to ask questions for clarification. Consent forms should be dated and include a reasonable expiration date.
Social workers should be especially sensitive to clients’ cultural and ethnic differences related to the meaning of concepts such as “self-determination” and “consent.” When necessary, forms should be translated into a client’s primary language, and competent interpreter services should be provided. Social workers should never ask clients to sign blank consent forms, even when practitioners believe they have clients’ permission to insert details at a later time. This arrangement can not possibly constitute informed consent.
4. A client must have the right to refuse or withdraw consent. Social workers should be prepared for the possibility that clients will exercise these rights. Social workers should inform clients of their rights and help clients make thoughtful and informed decisions based on all available facts and information about potential benefits and risks.
— Frederic G. Reamer, PhD, is a professor in the graduate program of the School of Social Work, Rhode Island College. He is the author of many books and articles, and his research has addressed mental health, healthcare, criminal justice, and professional ethics issues.