Autonomy and Decision Making for Health Promotion in Adolescence.
The purpose of this article is to increase nurses' knowledge about fostering the participation of adolescents in making decisions about their own health care, either within the context of their families or alone. The definition of autonomous adolescent health care decision making will be discussed, along with its bases in the bioethical principle of autonomy, in the social sciences, and in the law. In addition, the discussion will address the self-care conceptual model of nursing, which is a developmental model and fosters individual growth.
Autonomous Health Care Decision Making
A critical element of Dorothea Orem's (1995) conceptual model concept of self-care agency is the ability to evaluate health care alternatives, make decisions, and take the actions necessary to achieve self-care. By involving adolescents as full participants in their care, self-care agency may be enhanced. This would include provision of informed consent discussions with providers and permission of choice among health care alternatives (Dickey, 1992).
Orem (1995) focused on the developmental aspects of self-care. This theory denotes the relationship between deliberate self-care activities of mature and maturing people concerned with their own development and functioning. Self-care is learned within the context of social groups including the family and community that, for adolescents, does not preclude supervision by responsible adults (Orem, 1995). These premises are consistent with the legal definition of informed consent, which is based on the ethical principle of autonomy (Grisso & Appelbaum, 1998).Withoutsubstantially autonomous action, self-care agency cannot be employed (Faden & Beauchamp, 1986). Competency (the capacity to make informed health care decisions) may be considered a subconcept of self-care agency (Dickey, 1992). A full discussion of adolescent health care decision making follows.
The nature of rational decision making is complex. In addition, determining the age that adolescents can reasonably be expected to make sound decisions regarding their own health care requires a multifaceted approach. The literature is confusing; the law, the laity, and many concerned professional disciplines often disagree with one another. No position is absolutely right or wrong.
Age and Developmental Considerations
Ethical, moral, and legal aspects of obtaining informed consent from adolescents are often considered together because these considerations are frequently intertwined. From a legal perspective, which is most basic to these arguments, the age of majority is 18 years in most states, while other states establish 21 years of age as the official beginning of adulthood (Rosoff, 1981).
For any person, regardless of age, to be considered competent to make health care decisions, four primary tests of legal competency must be satisfied: (a) evidence of choice; (b) reasonable outcome of choice (such choice that a reasonably prudent person might make); (c) rational reasons (the preference was selected by a rational reasoning process); and (d) understanding (comprehension of the risks, benefits, and alternatives to treatments) (Grisso & Appelbaum, 1998; Weithorn, 1983). Based on findings from an empirical study, Weithorn and Campbell (1982) reported that, given all information, adolescents at 14 years of age satisfied these criteria and were able to make decisions as competently as adults. Although neither Ross (1997) nor Weir and Peters (1997) conducted empirical studies, their published work agrees with Weithorn and Campbell's findings: they also suggest that adolescents from 14 to 17 years of age are capable of making their own decisions when full disclosure has taken place. Weir and Peters (1997) further suggest that decision-making capacity should be assumed for all adolescents from ages 14 through 17 years, except when individual adolescents demonstrate that they do not have the necessary decision-making capacity. In reality, in many cases, only those adolescents meeting the criteria for emancipation or mature minor status (see Glossary of Terms) are legally afforded full ability to participate in their care (Weir & Peters, 1997).
Glossary of Terms
Basic Bioethical Principles
Autonomy - synonymous with self-determination independent; self-reliant; and the self-contained ability to decide. Includes a person's rights to decide what will be done with his or her person, be given information necessary for making informed judgements, and acceptance or refusal of treatment. Justice - in health care usually concerns allocation of scarce resources or distributive justice - the just allocation of goods, services, insurance, third party payment. Beneficence - principle of the common good. This principle either stands alone, or in relationship to harm, as is the cost-benefit or risk-benefit ratio. Non-maleficence - derived for the Latin word male, which means evil the term literally means do no harm. To determine whether one is doing harm, risk-benefit ratios must be considered. Advance Directives Advance directives - written, often legal documents that specify an individual's wishes regarding care before contact with a health care provider or agency. They require witnesses over the age of majority (18 years) and who are not beneficiaries of the will of the person creating the document. Parents or legal guardians create advance directives for their children, preferably with the child's participation. Living will - a type of advance directive; limited to situations in which the patient's condition is considered terminal of end-stage (difficult legally and ethically to define). Durable Power of Attorney - a legal construct thought of a mainly concerning adults. For minors, parents or legal guardians assume this role in which someone is identified to make decisions on another's behalf when the person is mentally incapacitated. Prior verbally expresses wishes - sometimes respected by providers as advance directives when no written document exists (Cruzan v. Director, Missouri Department of Health, 1990). Special Legal Status of Minors Emancipated minor - one who is not subject to parental control or regulation in many legal contexts. Status exists in health care so that minors will seek treatment for illnesses or conditions in which confidentiality if guaranteed (unwanted pregnancy, sexually transmitted diseases, substance abuse issues). Deals primarily with limited, specific conditions, such as being married. A self-sufficient minor living away from parents may be considered emancipated under some conditions. Mature minor - a variation on the emancipated minor status. Laws vary greatly from state to state, so providers are urged to become aware of the laws in all states in which they practice and treat minors. Components of Informed Decision Making Consent - (see Body of Article). Assent - agreement to participate in the treatment plan even if the full comprehension needed to fulfill the requirements of an informed consent is not present in the patient because of age or lack of capacity to understand all the information requisite to making the decision. Dissent - the act of declining treatment based on having learned all of the information and having decided to forgo (usually life-sustaining) treatment anyway. Note: Adapted with permission from Bowden, V.R., Dickey, S.B. & Greenberg, C.S. (1998). Children and their families: The continuum of care (pp. 77-78). Philadelphia: W.B. Sanders Co.
The process of determining an adolescent's ability to meet the four primary tests of legal competency is shown in the following example. An adolescent presents with blurred vision and right-sided weakness. The first test of legal competency involves making a choice: This could be accomplished by the adolescent indicating a preference among alternatives, even if that is a simple yes or no to treatment. The second test is that the choice that is made has a probable outcome that is reasonable (a reasonably prudent person by legal standards might make such a choice). For example, the adolescent might choose to have surgery to evacuate a cerebral blood clot rather than risking morbidity or death by refusing the surgery. Thirdly, the choice preference must be selected by a process of rational reasoning. For example, the adolescent decides to have the blood clot removed in order to get better. Finally, the adolescent must demonstrate a comprehension of the risks, benefits, and alternatives to treatments. The assessment of understanding is best accomplished by determining the individual's ability to repeat back his or her level of comprehension. However, measurement of a patient's understanding is often subjective and may even defy meaningful evaluation (Dickey, 1992).
Many Institutional Review Boards (IRBs) suggest obtaining assent for participation in research from all developmentally appropriate children over the age of 7 years along with parental consent (Kachoyeanos, 1996). Assent means the child or adolescent agrees with the treatment plans. This is consistent with Federal Regulations (U.S. Department of Health and Human Services, 1991). Although these guidelines are geared toward minors' participation in research, they logically extend to health care treatment choices. In addition, for all ages of human participants in research, Federal Regulations require that a description of the purpose of the study must be supplied to all potential subjects at the sixth to eighth grade reading level (Leiken, 1983). This standard is important in providing information about health care decision making as well as research. However, the sixth to eighth grade reading level may not meet the needs of younger children who fall within the realm of giving assent or dissent.
Guidelines published by the American Academy of Pediatrics (AAP) Committee on Bioethics (1995) emphasize obtaining informed permission for participation in research and for treatment from parents or legally appointed surrogate decision makers (guardians), assent from younger patients, and fully informed consent from those minors that have appropriate decision-making capacity and legal empowerment. The AAP classified decision-making ability into three categories: (a) minors, those who lack decision making capacity; (b) those with developing decision-making capacity, and (c) those with the capacity for health care decision making. They recommend that parents should make health care decisions for their children who lack capacity, unless such decisions are neglectful or abusive (AAP Committee on Bioethics, 1995). A criticism of the AAP statement is that they did not offer guidance as to what their definitions are or how to test for them (Ross, 1997). Grisso and Appelbaum (1998) provide similar guidelines and definitions for adults. The definitions related to the assessment of competence in minors are evolving.
Professionals concerned about adolescent informed consent have given many examples of adolescents deciding about their own health care (Holder, 1992; Igoe, 1992; Leiken, 1983). Evidence suggests that many adolescents have reached the age at which they can make competent decisions when a full consent process takes place (Deatrick et al., 1994; Dickey, 1992; Weithorn, 1983; Weithorn & Campbell, 1982). Full disclosure becomes key to the process of enabling their competent participation. Additionally, to protect adolescents from making foolish decisions for themselves, those who are psychologically or mentally incompetent are excluded from most considerations regarding independent decision making. An incompetent person has either been adjudicated legally incompetent or has such severe behavioral symptoms that a provider seeks help from other decision makers.
When adolescents of normal and higher intelligence are given all the information to make health care treatment decisions, they probably make decisions similarly to adults (Dickey, 1992; Weithorn & Campbell, 1982). Although many health care providers believe that the ability to make reasonable informed consent decisions is based on abstract thinking and formal operations as described by Piaget (1972), Dickey (1992) found that an adolescent need not possess formal operational, abstract thought to participate in valid health care decision making. Physiologic correlates, such as Tanner stage, evaluated by the adolescent's remembered knowledge of his or her own body, also are not statistically significant indicators of a person's ability to make competent health care decisions (Dickey, 1992). The most important factor is age (Dickey, 1992; Weithorn & Campbell, 1982). While this variable can be seen as arbitrary, age probably serves as a useful guide because it subsumes so many other factors, at least among adolescents.
Legal Concerns and the Care of Adolescents
The legal development of the doctrine of informed consent has its basis in the value of autonomous decision making in Anglo-American society (Rosoff, 1981). It is of historical interest to note that issues in early recorded cases were not concerned so much with self-determination but with lack of information presented to the patient. Four famous battery case decisions between 1905 and 1914 formulated the basic features of the American doctrine of informed consent (Faden & Beauchamp, 1986). The holdings in these cases were that specific consent to a particular procedure is required. The idea was that free citizens have a right to govern themselves.
These cases led to the evolution throughout the 20th century of what has become current doctrine concerning informed consent with those who have reached the age of majority. Pediatric nurses are concerned about the legal aspect of consent because they often serve populations who may have developmental capacity prior to their legal age, or they may lack this capacity even though they have reached the chronological age.
The Patient Self-Determination Act of 1990. The Patient Self-Determination Act of 1990 is part of the Omnibus Budget Reconciliation Act of 1990 (OBRA). Any organization with Federal funding providing health care must develop a written description of advance directives regarding withholding or withdrawing life-sustaining treatment. The idea is that patients know about having advance directives and then execute their own directives before they are treated.
Advance directives is a term connoting written, often legal, documents that specify an individual's wishes regarding care; for example, end-of-life care and life-sustaining treatment. These documents are written in advance of the occurrence of a situation in which they might be needed -- usually prior to a surgery or treatment of a serious medical problem. Advance directives require witnesses who have reached the age of majority (18 years) and who are not beneficiaries of the will for the person creating the document (Bowden, Dickey, & Greenberg, 1998). To encourage the adolescents' self-care agency, parents or legal guardians can create advance directives with the full participation of their teenagers. A living will is a type of advance directive. Other types include Durable Power of Attorney and prior verbally expressed wishes.
Case law acknowledges the legal validity of an individual's verbal wishes and remarks (Cruzan v. Director, 1990), but written and appropriately witnessed documents, such as advance directives, carry much greater weight. With adolescents, verbal expressions remembered by their intimates may be the only records about what their thoughts would be regarding a life-threatening situation. Many people probably would find the prospect of discussing advance directives with their healthy adolescents emotionally distressing, since most parents do not expect their children to die before they do. However, parents of adolescents with serious acute or chronic conditions, where there is a higher risk for death, should be actively encouraged to discuss such topics with their off. spring before an acute situation arises (Cruzan v. Director, 1990).
Durable Power of Attorney is a legal construct for adults in which an individual is identified to assume a decision-making role on behalf of another individual. Parents or legal guardians legally assume this role when a child is mentally incapacitated. An exception might be in the case of a legally emancipated minor, who might identify a proxy decision maker, or have one identified by the courts.
In the nursing care of adolescents, living wills are primarily used with minors who are in the terminal stages of an illness, where death is imminent, and they can express their wishes. To be most effective, living wills must be current and negotiated with the family (Rushton, 1992). Those adolescents most likely to be involved in creating their own living wills have chronic illnesses that deteriorate over time, such as cystic fibrosis, AIDS, or certain types of cancer. In practice, living wills created by adolescents often are overridden by parents, physicians, nurses, and other health professionals who "individually and collectively, may simply choose not to listen ..." (Weir & Peters, 1997, p. 35). However, personal, life-and-death decisions made by an adolescent and expressed in a living will may be "primarily matters of law" that jeopardize the legal status of the involved adults, either as parents or professionals (Weir & Peters, 1997, p. 35). In other words, by fulfilling the minor's wish, the parents or providers could be courting civil or criminal risk to themselves.
The legal doctrine of informed consent is based on medical decision making by an individual, rather than a person within a family context (Kuczewski, 1996). For adults, there is ambiguity about what role family members will have in participating in health care decisions. In fact, the family's role for an adult patient, "when there is no unresolvable conflict, is trivial and uninteresting" (Kuczewski, 1996, p. 32). With minors, the tables are turned and the decisions legally belong to parents or guardians in most cases unless there is unresolvable conflict. The minor's role becomes important only when there is severe conflict among the minor, parents, and/or providers. Then the decision must go elsewhere, for example, to the courts. This is why providers of child and adolescent health care have a stringent responsibility to see that their patients' autonomy needs are met within the contexts of their developmental abilities and in relation to the desires of all decision makers within the family.
Rights of minors. An important aspect of health management in the nursing of adolescents is protecting the legal rights of the adolescent. Nursing responsibilities in this regard include (a) understanding what qualities a fully informed consent, assent, or dissent by a minor; (b) child abuse reporting and documentation; and (c) a full comprehension of parent or guardian access to the child or to confidential information regarding that child. It is beyond the scope of this article to define these due legal processes further, but the interested reader can learn more from AHCPR, 1997; Bowden et al., 1998; DHEW, 1977; DHHS, 1991; Holder, 1977; Leiken, 1993; and NIH, 1998.
Technically, minors have no rights under the U.S. Constitution. Laws regarding the rights of children originated later and have been codifiedmostly at the state level (Rosoff, 1981). The impact of state level laws is a patchwork across the country with some states having very liberal laws and others having very conservative ones (Rosoff, 1981). This has an impact on both adolescents and the providers of their care. Each state has its own definitions regarding the status of emancipated minors (usually those who are married, pregnant, a parent, in the military, or abandoned by their parents). Some states have minor treatment statutes, allowing minors to consent to certain types of medical care (usually treatment for sexually transmitted diseases; pregnancy; pregnancy prevention, possibly including abortion but not sterilization; alcohol and other drug abuse; and in some states, mental health problems) (Weir & Peters, 1997).
With regard to state laws, many legislators lack realistic thinking about adolescents in clinical settings. Weir and Peters (1997, pp. 33-34) contend that "most state legislatures seem to think that adolescents do not die in clinical settings, or are incapable of making informed consent or informed refusal decisions about treatment options, must be protected from their own lack of judgment, or simply should not be permitted to give legally binding advance directives regarding life-sustaining treatments and surrogate decision-makers."
Legislators make policy based on perceived importance to their voters and must be educated regarding issues such as these.
Rights of parents. Parents have rights to privacy, legally derived from the U.S. Constitution's Bill of Rights and later amendments. These rights have been subject to broad interpretation in the United States. Rights typically involve an obligation, usually to others. In the case of parents' rights, the obligation is that the parents provide a healthy and safe environment for their children. Rights may be interpreted as legal, ethical, or both (Hall, 1996). Ethically-related rights answer to a higher authority (fidelity to ethical principles) than mere legal codes, but are enforced by the criminal codes. For example, parents who treat their children inhumanely can be prosecuted under criminal statutes if the injuries or neglect are severe. Another example would be when the courts intervene if parents neglect the health care of their offspring.
Stemming from the right to privacy are the rights of parents to parent in the manner they choose, as depicted in the Declaration of Independence with regard to citizens' inalienable rights ... life, liberty, and the pursuit of happiness. The freedom to parent without interference, especially for minors who were by custom considered chattel (owned persons), evolved out of this document (Rosoff, 1981). Although the Declaration is not a legally governing document as is the U.S. Constitution, freedom to parent without interference is an idea that fostered the Constitution's development and a 200-year-old evolution of legislative recognition that certain rights are to be protected, among them the freedom to parent and the protection of privacy (Rosoff, 1981).
Some individuals in Colorado sought to amend that state's constitution to include the "inalienable right for parents to direct and control the upbringing, education, values, and discipline of their children" (Brandon, 1996). While sounding straightforward, this position is a culmination of a growing national public policy debate regarding whether government has overreached its limits in shaping home life (Brandon, 1996). Supporters believe that such an amendment would delineate official and legal responsibility for a parent to raise a child. However, others believe that it could become a serious obstacle for assisting children at risk for many kinds of abuse or neglect.
Emancipated minors. Unless an adolescent is considered legally emancipated in the state where care is being provided and can provide proof of emancipation, legal requirements of parental consent involve the signatures of a custodial parent or legal guardian (Holder, 1992). Holder (1992) defines an emancipated minor as one who has been recognized as "one who is not subject to parental control or regulation" in many legal contexts (Holder, 1992, p. 559) (see Table 1 for a prototype state). The legal status of minors regarding emancipation has remained static since the 1970s, although that climate may be changing. Nurses and other health care providers must become aware of the specific statutes, rules, and regulations within each state of practice to avoid breaking the law unintentionally.
Table 1. Pennsylvania Law Regarding Consent by Minors - Prototype State Law for Adolescent Autonomous Decision Making
According to the following Pennsylvania Law, minors can give consent for medical care in the circumstances listed below: Pa. Stat. Ann. Tit. 35 (1977 Bd. Vol.) (a) [sections] 10101; (b) [sections] 10102; (c) [sections] 10103; (d) [sections] 10105; (e) Tit. 71, [sections] 1690.112 (1979-80 Cum Supp.). * A person who is 18 or older, who has graduated from high school, or who has been married or pregnant -- medical, dental and health services. * A minor parent -- medical treatment for his or her child. * Any minor -- examination or treatment for pregnancy, venereal disease or any other reportable disease. * A physician acting in good faith -- may rely upon the consent of a minor who professes to be one who is capable of consenting to care. * A minor -- diagnosis, care and/or counseling, for drug abuse. Physicians or organizations providing counseling to a minor -- may, but need not, inform the minor's legal guardian of care given or needed.
Many states have liberalized their laws to permit any minor to consent to the diagnosis and treatment of pregnancy, infectious diseases (especially sexually transmitted), harmful substance use and dependency, and emergency care when life or health are threatened. The law increasingly recognizes that under certain circumstances, adolescents will not seek treatment unless confidentiality is guaranteed. Case law for the state where health care is delivered should be consulted when treating any minor without the knowledge or consent of the custodial parent or legal guardian. Most legal cases to date have upheld the following general principles: (a) the right to an abortion as an extension of constitutionally guaranteed personal freedoms; (b) consultation of a minor's parents/guardian in non-emergency cases; and (c) at least an attempt to consult parents unless dealing with an emancipated minor (Holder, 1977; Rosoff, 1981). Abortion statutes vary from state to state with much greater frequency than the general applications of these laws (Rosoff, 1981).
Moral imperatives suggest obtaining the assent or consent signature of the adolescent whenever possible. Most institutions do not provide for including minors in decision-making, but obtaining such a signature may satisfy an adolescent's need to feel a part of crucial health decision making.
Confidentiality issues and the minor patient. Confidentiality is inherent to one's right to privacy and generally recognized by states and the national government. It is frequently violated by health care providers and by the sheer accessibility of patient records in the information age. The right to confidential health promotion services and care can be found in American Nurses Association (ANA) Code for Nurses (1985) (see Table 2).
Table 2. ANA Code for Nurses -- First Three Statements
1. The nurse provides services with respect for human dignity and the uniqueness of the client, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems. 2. The nurse safeguards the client's right to privacy by judiciously protecting information of a confidential nature. 3. The nurse acts to safeguard the client and the public when health care and safety are affected by the incompetent, unethical, or illegal practice of any person.
Note: Reprinted with permission from American Nurses' Association (1985). Code for nurses. Kansas City, MO: Author. The Code is made up of 11 statements. Those relevant to the article are listed here.
Information of a confidential nature should be protected judiciously. Contradictions do occur. If a minor is seen by a school nurse for a routine problem, this may not be considered confidential. A pregnancy test is considered confidential. Information that parents may obtain about their adolescents varies from state to state and may be legally contradictory. The right to confidentiality may be superseded, especially when vulnerable parties, such as adolescents or those at risk to self or others (suicidal or violent), are in direct jeopardy. The patient and family should be warned that this ethical duty may be overridden.
Informed consent. Three general situations where treatment may be rendered to minors without legal consent by a parent or guardian are: (a) an emergency where consent is presumed and failure to treat would lead to permanent damage or death; (b) a situation where the consent of a minor is sufficient (for example, treatment for sexually transmitted diseases); and (c) a court order or other form of legal authorization is obtained (Hall, 1996).
The idea of informed consent stems from the ethical principle of autonomy in classical ethics that on the individual level encompasses independence, self-reliance, and the self-contained ability to decide. This idea of obtaining the person's informed consent has been developing in nursing, biomedical, and legal literature since the early 1970s. It has inspired a multistage process for protecting adult patient choice in health care. Allowing adolescents and parents to choose freely and specifically among all care options permits a greater sense of control over individual destiny and greater confidence in the overall direction of care (Dickey, 1992).
Leiken (1983; 1993) described the idea of consent and its subtypes, assent and dissent (see Glossary of Terms), and questioned whether minors should be able to withhold consent and, thereby, nullify that of their parents. In addition, he felt that if assent is honored by a health care provider, then dissent should be binding (Leiken, 1983). Kachoyeanos (1996) supported this position. Holder (1992) concurred, at least in cases that are not life-threatening. Consent, assent, and dissent are interlocked in the legal sense.
Informed consent is not simply a matter of signing a consent form. It is a process that occurs between provider and patient. The nurse must pay attention to the situations for which consent, assent, or dissent are rendered by the minor and family. The ages at which these processes may take place are controversial, depending upon the context of the situation (see Table 3).
Table 3. Full and Legal Disclosure
An informed consent must contain the following six transactions to be considered full disclosure: 1. An explanation of the condition 2. A fair explanation of the procedures to be used and the consequences 3. A description of alternative treatments or procedures 4. A description of the benefits to be expected 5. An offer to answer the patient's inquiries 6. Freedom from coercion, unfair persuasions, or inducements
The ANA (1985) places priority on the right to self-determination first in its ethical Code for Nurses and alludes to certain developmental and competency considerations. This means that adolescents must display cognitive processes indicative of a capacity to make an informed health care decision. To demonstrate the highest degree of respect for persons, a central ethical principle, some advocate that each person be individually evaluated for competency to the task at hand (Heath, 1977; Weir & Peters, 1997; Winslow, 1984). This approach empowers youth as developmentally appropriate consumers of self-care (Igoe, 1991). Assurance that a full consent process has taken place is especially important as nurses assume advanced practice roles (Kline, 1995). Mention of the principle of autonomy can be found in ANA Code for Nurses (1985) (see Table 2).
Autonomy, Paternalism, and the Care of Adolescents
Autonomy is thought to be synonymous with self-determination. Of the four major bioethical principles -- autonomy, justice, beneficence, and non-maleficence -- autonomy for adolescents is the principle that is most perplexing to the provider. Autonomy encompasses independence, self-reliance, and the self-contained ability to decide. Autonomy for the adolescent would include the rights (a) to decide what will be done with his or her person; (b) to be given information necessary for making informed judgments; (c) to be told the possible effects of care; and (d) to accept, refuse, or end treatment. This ethical principle has been supported for adults in the U.S. since 1914, when Judge Cardozo held that "Every human being of adult years and sound mind has a right to determine what shall be done with his own body" (Schloendorff v. The Society of the New York Hospital, 1914). This case precedent has formed the basic societal construct of informed consent in 20th-century American law (Hall, 1996).
Allowing adolescents and parents of less competent, younger children to choose freely and specifically among all care options enables a greater sense of control over individual destiny and greater confidence in the overall direction of care. Protecting and assuring the autonomy of adolescents is a set of delicate negotiations. Developmental ability and age are the most appropriate guidelines for judging how well those less than the age of majority may participate in making autonomous decisions and how participation can be gradually assumed (Deatrick et al., 1994).
Paternalism is a form of behavior by providers whereby the assumption is that the professional knows what is "best" for the parents and the adolescents. In general, the pediatric nursing perspective fosters arriving at a consensus by the minor (assent for children in the school-age range and increasing participation in consent for the developing adolescent), parents' or guardians' consent, and the recommended treatments by the health professionals involved. Most pediatric nurses assist all to come to an acceptable agreement whenever possible.
Acts of paternalism preclude the adolescent's or family's ability to be a full participant in care due to nondisclosure of critical information used for autonomous decision making. This approach by health care providers is tolerated less and less by consumers of health care. For information withheld from consumers by professionals to be validated ethically, the adolescent or family must state that they do not wish to have the information.
The application of the bioethical principle of autonomy is important when nurses care for adolescents. Orem's (1995) proposition set for the theory of self-care includes the idea that self-care and care of dependent family members are learned within the context of different social groups. The presence or absence of self-care agency is related to the stage of development of individuals, including the development of self-direction with respect to goal selection. The ability for such behavior is consistent with the legal definition of informed consent, is based upon the principle of autonomy (Faden & Beauchamp, 1986), and falls under Orem's rubric of self-care agency.
Health services delivered by a trusted source frequently will influence an adolescent's choice for the best possible options in the care of oneself. If at all possible, the adolescent's health care should be dealt with by providers within the context of his or her family, unless it is likely that seeking care will be avoided when this is done. Full, informed consent discussions should take place, even for routine care decisions. Assent of the younger child and consent or a binding dissent of the adolescent should be the provider's goal.
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Susan B. Dickey, PhD, RN, C, is Associate Professor, Department of Nursing, Temple University, College of Allied Health Professions, Philadelphia, PA.
Janet Deatrick, PhD, RN, FAAN, is Associate Professor and Program Director, Nursing of Children Graduate Program, University of Pennsylvania School of Nursing, Philadelphia, PA.
Acknowledgment: The authors gratefully acknowledge the following for their funding and support: 1989, Sigma Theta Tau International, Grant Award Recipient; 1989, American Nurses' Foundation Scholar; Doctoral advising -- Dr. Laura Hayman, PhD, FAAN, Case Western Reserve University (formerly of the University of Pennsylvania, School of Nursing).
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|Author:||Dickey, Susan B.; Deatrick, Janet|
|Date:||Sep 1, 2000|
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