or cultural beliefs: The law, ethical principles, and clinical implications

Parents’ Refusal of Medical Treatment Based on Religious and/or Cultural Beliefs: The Law, Ethical Principles, and Clinical Implications Luanne Linnard-Palmer, EdD, CPON, RN Susan Kools, PhD, RN

When parents apply religious or cultural beliefs concerning spiritual healing, faith healing, or preference for prayer over traditional health care for children, concerns develop. Medical care is considered one of the most basic of all human needs, and yet parents may elect to apply religious or cultural beliefs in place of traditional Western medical care for their children. Because memberships in religious groups that have beliefs concerning prayer and health care for children are increasing, the topic is of great importance for pediatric health professionals. This article describes parental refusal of medical care, and it discusses the legal, ethical, and clinical implications. © 2004 Elsevier Inc. All rights reserved.

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MERICAN CULTURE PLACES great value on the autonomy of parental decision making for their children. When it comes to medical decisions, our culture trusts that parents will meet one the most basic of human needs: the need for health care. However, there are many influences on parents’ decisions about a child’s medical care, two of which are cultural practices and religious beliefs. This article presents clinical examples of treatment refusal and discusses the impact of refusal on those involved, as well as associated legal and ethical concerns for pediatric health care. Reasons why parents do not consent to medical treatments and interventions are many (see Table 1 for examples of treatment refusal). Reasons for treatment refusal include anxiety and emotional turmoil at the time of diagnosis, ambiguous consenting procedures, fears concerning advanced technology, fears about social attitudes towards functional and cognitive limitations as a result of aggressive medical treatment, costs in dollars as well as lost employment time for care of the ill child, sacrifice of family life when a child has great health-related demands, and religious or cultural frameworks that advocate limitation of treatments or the preference for prayer to address illness. Many cultures have particular values and behaviors associated with children’s health, and religion can also influence whether parents consent to particular treatments or seek health care at all. Table 2a describes a sample of cultural groups that have

Journal of Pediatric Nursing, Vol 19, No 5 (October), 2004

imperatives related to medical treatment decision making. Table 2b gives a sample list of the churches recognized in the United States as having doctrines that either limit medical interventions or promote spiritual healing, faith healing, or prayer in lieu of health care. Jehovah’s Witnesses and Christian Scientists are the two most common religious doctrines that may dictate treatment refusal, limitation, or preference for prayer. Some of these churches see infections and diseases as moral issues, examples of sin (Swan, 1997), a “vicious creation of the gross human mind” (Laur, 1980, p.72), or a “wrongful resign of oneself to being ill” (Merrick, 1994, p. 325). Culture, too, may have highly influential norms in which members vocalize their desire for specific health-related guidelines. For example, members of diverse cultural groups may refuse certain medications (beef- or pork-based), standard American diets or medical-surgical treatment, and procedures that are not in alignment with their belief systems, traditions, or practices.

From the Dominican University of California, San Rafael, California, and The University of California, San Francisco, California. Address correspondence and reprint requests to Luanne Linnard-Palmer, 50 Acacia Ave., San Rafael, CA 94901. 0882-5963/$ - see front matter © 2004 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2004.05.014 351

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LINNARD-PALMER AND KOOLS Table 1. Clinical Examples of Treatment Refusal, Limitation or Delay

1. A 4-year-old child with a hemoglobin of 4.9 presents in acute distress from anemia associated with a diagnosis of sickle cell anemia. Parents, devout Jehovah’s Witnesses, refuse to consent to transfusions. 2. A 10-year-old child with status post brain tumor presents with new onset acute leukemia. Mother refuses to consent to second oncology treatment for her child, preferring to take the child to southern Mexico to seek the healing powers of a traditional healer, the curandero. 3. A 9-year-old child who presents with profound osteomyelitis after stepping on a nail is accompanied by devout Christian Science parents who refuse to consent to a hospital admission for extensive antibiotic therapy. 4. A 14-year-old Muslim child is recovering from complications from a deep burn at the elbow because the family had the pig skin graft removed due to ambiguous consent procedures that did not take into consideration cultural requirements.

Pediatric nurses and other health care professionals involved with family practice may face complex scenarios concerning treatment refusal. It is, therefore, important for all members of the health care team to be able to recognize the influences of cultural and religious beliefs when parents are making treatment decisions. Without this understanding, a child may not receive thorough health promotion, disease prevention, or treatment for illnesses. TREATMENT REFUSAL Treatment refusal has been defined as the “overt rejection by the patient, or his/her representative of medication, surgery, investigative procedures, or other components of hospital care recommended or ordered by the patient’s physician” (Appelbaum & Table 2(a). Churches Whose Doctrines or Teachings May Refuse, Limit, or Have a Preference for Prayer over Medical Treatment for Children Jehovah’s Witness Christian Science Church of the First Born Christian Catholic Church Faith Assembly Followers of Christ End Time Ministries The Believers’ Fellowship Faith Temple Doctoral Church of Christ Christ Miracle Healing Center The Source “No Name” Fellowship The Fellowship Faith Tabernacle 1st Century Gospel Pentecostal Church Evangelistic Healers

Roth, 1983, p. 1296). Adults have the right to refuse medical treatments because they have a right to self-determination. Children, however, are not considered autonomous and can neither give informed consent nor refuse treatment. Thus, in the field of pediatrics, there are legal implications when a parent refuses medical treatment for a dependent minor. The ethical principles that underpin the processes of informed consent and treatment refusal form the basis for national and state laws on medical treatment for children. FREQUENCY OF TREATMENT REFUSALS Parent refusal treatment for children has been well documented in the literature, in the media, and in court proceedings (Appelbaum & Roth, 1983). The frequency of medical treatment refusal and subsequent loss of temporary guardianship for minors is unknown. On the CHILD website (Children’s Health Care is a Legal Duty), a national organization for information on current laws, exemptions, and the status of many church doctrines, Swan (1997) noted that childhood deaths have been documented after medical care was withheld on religious grounds. CHILD reported 170 deaths between 1975 and 1995 in approximately 18 religious sects that object to, decline, or delay medical intervention. Although the literature documents children’s deaths, there is little current literature regarding nursing care issues when parents refuse treatment based on cultural or religious beliefs. REACTIONS TO REFUSAL EVENTS The refusal of medical treatment for children is a complex phenomenon that can have profound impacts on the child, family, and health care providers. Lawry, Slomka, and Goldfarb (1996) have noted that conflicts with mainstream medical practice can create tension for clinicians when they try to honor different religious perspectives while carrying out what they believe to be the obligations of their profession. Nurses are also affected: They are taught not only to be culturally sensitive, but also to be supportive family advocates; and participating in mandated treatment to enforce medical prescriptions may be perceived as directly in conflict with adTable 2(b). Cultural Groups Who May Direct Specific Treatment Decisions Black Muslim (Vegan diets and refusal of pork-based medicines) Islamic (May refuse narcotics or any medicines deemed addictive or with an alcohol base) Hindu (Refusal of beef-based medical products)

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vocacy. Other reactions include stress related to the treatment decisions (Thurkauf, 1989). When the patient is a child, treatment refusals are particularly difficult; there is uncertainty about who is responsible for the moral and legal implications of the child’s care and outcomes (Overbay, 1996). Parents may experience grief compounded by allegations of possible medical neglect of their child (Kopelmen, Irons, & Kopelman, 1988). When parents refuse medical treatment for an acutely ill child whose condition is deemed to be one that will respond well to conventional Western medical interventions, physicians may choose, after being unsuccessful in bedside dialogues with the parents, to seek legally mandated treatment by way of State guardianship. Policies exist in pediatric hospitals to guide health care professionals in how to obtain State guardianship. Courts will, at times, override a parent’s decision to refuse or limit treatment based on the state’s child abuse or neglect laws (Fox, 1990). The need for state-mandated temporary legal guardianship of a child in order to receive needed medical care is sought by members of the health care team and will be granted, at times very expeditiously, when the treatment is considered lifesaving. This creates tension and therefore requires careful negotiations to ensure the best possible treatment for the child and prevent the family from leaving a health care facility against medical advice (AMA). Tension may be only one of several emotional responses felt by the child’s parents. Parents of Jehovah’s Witness may feel confusion, stress due to the loss of control, guilt, and perhaps some relief during state-mandated treatment when medical decisions are no longer theirs to make (Anderson, 1983). LEGAL PERSPECTIVES Historically, parental rights over their children’s lives have been considered absolute. Since 1903, American courts have upheld the constitutional right to religious freedom. However, they have not conferred the right to deny medical treatment for children (Swan, 1997). The constitutional right to child rearing is protected, but Supreme Court decisions have demonstrated that this constitutional right includes medical decisions only so long as there is no finding of abuse or neglect. According to Swan (1997), the laws make it clear that parents do not have a First Amendment right to abuse or neglect their children, and therefore, there is possible criminal liability when parents refuse medical treatment for their child based on religious or cul-

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tural grounds. Since 1944, the United States Supreme Court has ruled that “the right to practice religion freely does not include liberty to expose . . . a child . . . to ill health or death. Parents may be free to become martyrs themselves, but it does not follow that they are free . . . to make martyrs of their children before the children reach the age of full and legal discretion when they can make that choice for themselves” (Prince vs. Massachusetts, 321 US 158, 166, 1944). This limitation of parental rights is illustrated by a county in the state of New York that ruled that when a parent’s religious beliefs interfere with a child’s basic right to live, the child’s life is paramount and the parent’s religious beliefs (doctrines) must give way (Fox, 1990). Religious exemptions from child abuse laws were first passed in 1974 by states as a reaction to the federal government’s claim that no allocation of funds for child protection programs would take place unless an exemption was provided. The purpose of an exemption is to provide parents who refuse medical treatment an avenue to follow their religious beliefs without fear of legal prosecution. Eleven states had exemptions in place by the end of 1974, and within 10 years, all states had one in place. Some states (Arizona, Washington, Illinois, and Connecticut) met these federal requirements by providing religious exemptions to prosecution to Christian Scientists only. These exemptions have been slowly revoked, and now, in all states except Iowa and Ohio, the government can prosecute for manslaughter when a child dies after parents refuse treatment based on religious doctrines. Currently, the U.S. Department of Health and Human Services does not mandate that states include an exemption. Rather, it requires states to include failure to provide medical care in their definitions of child neglect (Swan, 1997). The Christian Science church has been successful in securing exemptions from care of newborns, including eye drops and metabolic testing, as well as premarital and prenatal blood tests (Talbot, 1983). Forty-eight states continue to have religious exemptions from immunizations (Swan, 1997). Medicare, Blue Cross-Blue Shield, and many other insurance companies reimburse for Christian Science practitioners who provide spiritual care for a fee (Talbot, 1983). Furthermore, the Internal Revenue Service allows Christian Science healing prayer expenses to be deducted as medical expenses for income tax purposes (Skolnick, 1990). In order for this to happen, however, the state must recognize the tenets and practices of a “recognized

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church or religious denomination” as in the California Penal Code, Section 270. There are specific rules for exempting a church from legal prosecution for child abuse. The predication is that the church does not mix medicine, nutrition, manipulation, or hygiene with prayer (Swan, 1997). ETHICAL PERSPECTIVES Parental refusal of treatment is a highly complex phenomenon with both ethical and legal issues. Parental autonomy, a constitutionally protected right within the 19th amendment, pertains to procreation, marriage, child rearing, and education. Parental treatment refusals make this autonomy complex to uphold. Paren’s Patriae is the state’s right and duty to protect children, as evidenced by the requirement to report child abuse or neglect. Treatment refusal is considered a recognizable form of child neglect. The Best Interest Doctrine requires courts to consider both subjective and objective evidence when evaluating a minor’s best welfare, whereas Substituted Judgment is the court’s determination, on behalf of an incompetent individual, of the choice an individual would make if the individual was competent (Cushing, 1982), The four ethical principles of autonomy (selfdetermination), beneficence (promotion of welfare), nonmaleficence (inflicting no harm), and justice (fairness and impartiality) are all relevant to parental treatment refusal (Fox, 1990). When religious beliefs are deemed to have led to parents’ inability to decide what is right for a child, the

decision of what is best is left to the courts. There can be no doubt that parental treatment refusal is a powerful ethical dilemma for both the family wishing to adhere to their religious faith or cultural norm and for members of the health care and legal team who must live with the ethical consequences of their actions, specifically, their conscience. According to Fox (1990), “the result of the violation of a deeply held, long standing religious conviction (also) can be devastating. Pope John Paul II reportedly described forcing someone to violate his or her conscience is the most painful blow inflicted on human dignity. He believes it may even be worse than killing” (p. 138). Catlin (1997) notes that the two competing harms of withholding critical treatment from a child and overruling a parent’s decision making create a “classical ethical dilemma” (p. 289). Nurses involved in this ethical dilemma may experience personal distress when there is a perception of “committing a sin” (Catlin, 1997). IMPLICATIONS FOR CURRENT CLINICAL PRACTICE Members of health care professions who encounter families from diverse cultural and religious backgrounds must be knowledgeable about legal and ethical principles as well as the foundations of various religious doctrines. Table 3 briefly summarizes the history and beliefs of Jehovah’s Witnesses and Christian Scientists, the most widely recognized of religious sects whose doctrines in-

Table 3. Summary of Christian Science and Jehovah’s Witness Faiths Christian Science History: Established in 1879 by Mary Baker Eddy based on her own divine healing experiences in 1866, after reading the New Testament’s disclosure of Jesus’s healing practices. Beliefs: CS relies on prayer for healing based on the belief that God is supremely good and He does not create, nor do His laws sustain, disease. Illness is a direct result of ignorance, fear, and sin in the minds of humans (Phinney, 1989). CS sees spiritual healing as a rational choice for those who have witnessed God’s healing powers over the years. Providing spiritual healing for children is not seen as neglect, but as a responsible religious practice with evidence of consistent healings over decades. CS believes that God’s love is a healing power and prayer rooted in this love is beyond asking for a miracle. CS rejects the notion that if healing does not take place, then disease/illness is then God’s will (Meyer, 1986). Current Membership Status: There are millions of members in 70 countries. Each church is self-governed, without individual pastors. Jehovah’s Witness History: Founded by Charles Taze Russell in the 1870s as a nondenominational study group. By 1909, study groups had been formed all over the world. The Watchtower Bible and Tract Society, an international organization, first published the forbidding of blood transfusions in 1927 on penalty of loss of eternal life in God’s kingdom (Vercillo & Duprey, 1988). Beliefs: JW faith is based on Christian beliefs with underlying teachings on the consequences of disobedience. If members of the church disobey God, they are “cut-off,” and denied life through resurrection. Life extended via transfusion therapy becomes meaningless without spiritual purpose as the hope of everlasting life is forfeited (Quintero, 1993). Specific references in the Bible that are taken literally include Genesis 8:3-4, Acts 15:28-29, and Leviticus 17:13-14 (Thurkauf, 1989). Current Membership Status: In 1988 there were over 3.2 million JW’s worldwide, 25% living in the United States (Vercillo & Duprey, 1988; now there are over 10 million worldwide (Muramoto, 1999). Since 1996, there has been a movement to change the blood transfusion policy by the international members of the Associated Jehovah Witnesses for Reform on Blood (AJWRB) (Muramoto, 1999).

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fluence treatment decisions. Table 4 lists resources for continued study for health care professionals. The American Academy of Pediatrics, Committee on Bioethics has published four guidelines for health care professionals who encounter families with religious beliefs that lead them to refuse or limit treatment, or prefer prayer before seeking treatment: (1) be flexible and sensitive toward families who practice religious beliefs; (2) find ways to be supportive of legislation addressing that parents who refuse or deny life-sustaining and harm-preventing medical care for their children will be held legally accountable; (3) support the repeal of state exemption laws for religious affiliations; and (4) seek ways to support community agencies and organizations that provide education for both the public and lay groups on the issue of medical treatment refusal and legal implications (Frader, 1997). Nurses are in a unique position to offer support to families who are experiencing this dilemma. Although health care professionals involved may not think that parental cultural or religious beliefs should be applied to children’s medical decision making, and they may secure mandated treatment, the families deserve to be listened to and respected. Nurses can minimize families’ stress by demonstrating understanding of their diverse beliefs and allowing time for family members to disclose their concerns. Nurses, who pride themselves in being culturally competent, must decide the extent to which they want to be involved with this ethical dilemma. When nurses or physicians become emotionally distressed, it is important to not only seek up-todate information on the legalities associated with the case and seek guidance from the institution’s ethics committee, but also to seek guidance on how to stay focused and emotionally healthy.

Table 4. Valuable Resources 1. Children’s Health Care is a Legal Duty (CHILD) (www.childrenshealthcare.org). 2. Watch Tower Society publications. 3. Christian Science Reading Rooms. 4. World Islamic Medical Society (www.worldislamicmedicalsociety.org). 5. Book Born in Zion by former RN Carol Balizet who promotes Christian home births, stating that medical care is linked to pagan witchcraft. 6. Associated Jehovah’s Witnesses for Reform on Blood (www.ajwrb.org). 7. Elena Kondos’s article on “The Law and Christian Science Healing for Children: A Pathfinder” (1992) in Legal Reference Services Quarterly 12(1), 5-71 gives detailed descriptions of exemptions, laws, beliefs, and resources for further study. 8. Rita Swan’s article, “Children, Medicine, Religion and the Law” (1997) in Advances in Pediatrics, 44, 491-544.

In summary, it is very important that concerned readers find various sources of published literature before drawing any general conclusions about religious or cultural beliefs. There continue to be variations in the ways that religious beliefs and tenets are described by church members and health care professionals. For example, Nathan Talbot, a representative of the First Church of Christ, Scientist (Christian Science) wrote in 1983 that no dictates of the CS church mandate spiritual means of healing alone, for members or their children, nor is there coercion to adhere to one choice of treatment. However, Dr. Laur wrote in 1980 that “Christian Scientists are unalterably and irrevocably opposed to the traditional practice of medicine” (p. 74). Health care professionals can be better prepared to participate in treatment decisions if they are well versed in the literature on religious and cultural beliefs, and the many perspectives on treatment refusal. Further, as there may be variations in how families interpret or apply religious beliefs, individual families must be allowed to share their belief systems with the health care team.

REFERENCES Anderson, G.R. (1983). Medicine vs. religion: The case of Jehovah’s Witnesses. Health and Social Work, 8, 31-38. Appelbaum, P., & Roth, L. (1983). Patients who refuse treatment in medical hospitals. Journal of the American Medical Association, 250(10), 1296-1301. Catlin, A. (1997). Commentary of Johnny’s story; transfusing a Jehovah’s Witness. Pediatric Nursing, 23(3), 289-291 317. Cushing, M. (1982). Whose best interest? Parents vs. child rights. American Journal of Nursing, February, 313-315. Frader, J. (1997). Religious objections to medical care. Pediatrics, 99(2), 279-281. Fox, V. (1990). Caught between religion and medicine. AORN, 52(1), 131-146. Kopelman, L., Irons, T., & Kopelman, A. (1988). Neonatologists judge the “Baby Doe” regulations. The New England Journal of Medicine, 318(11), 677-683.

Laur, W. (1980). Christian Science visited. Southern Medical Journal, 73(1), 71-74. Lawry, K., Solmka, J., & Goldfarb, J. (1996). What went wrong: Multiple perspectives on an adolescent’s decision to refuse blood transfusions. Clinical Pediatrics, June, 317322. Merrick, J. (1994). Christian science healing of minor children: Spiritual exemption statues, First Amendment rights, and Fair Notice. Issues in Law & Medicine, 10(3), 321-342. Meyer, J. (1986). The spiritual-healing alternative. The Denver Post, June 21. Muramoto, O. (1999). Recent developments in medical care of Jehovah’s Witnesses. WJM, 170, 297-301 May. Overbay. (1996). Parental participation in treatment decisions for pediatric oncology and intensive care unit patients. Dimensions of Critical Care Nursing, 15(1), 16-24.

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Phinney, A. (1989). What is Christian Science Treatment? Christian Science Sentinel, 22, 21-42 May. Quintero, C. (1993). Blood administration in pediatric Jehovah’s Witnesses. Pediatric Nursing, 19(1), 46-48. Skolnick, A. (1990). Christian Scientists claim healing efficacy equal if not superior to that of medicine. JAMA, 264(11), 1379-1381. Swan, R. (1997). Children, medicine, religion, and the law. Advances in Pediatrics, 44, 491-544.

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Talbot, N. (1983). Faith healing, Christian Science, and medical care of children. The New England Journal of Medicine, 309(26), 1639-1644. Thurkauf, G. (1989). Understanding the beliefs of Jehovah’s Witnesses. Focus on Critical Care, 16(3), 199204. Vercillo, A. & Duprey, S. (1988). Jehovah’s Witnesses and the transfusion of blood products. New York State Journal of Medicine, September, 493-494.