Enterprise Risk Management (ERM) Legal & Regulatory Patient Safety/Clinical Care

Risks and Legal Issues in Caring for Minor Jehovah’s Witness Patients

A fundamental right of modern healthcare is that a patient can refuse medical treatment (1). In most circumstances, this extends to a parent’s right to refuse treatment for their minor child (2). When the rationale for refusal is religion, and especially when the treatment being refused is potentially lifesaving, the situation becomes more complex. This may arise when working with families from the Jehovah’s Witness (JW) community, a group that largely rejects whole blood products, including transfusion. This article provides background and practical tips for risk managers who may be asked to consult on cases involving the refusal of blood for minor patients from the JW community.

Background

There are an estimated 8.3 million JW in the world, primarily in the United States (1.2 million), Mexico (859,000) and Brazil (829,000) (3,4). The majority of JW interpret the Bible as prohibiting receiving whole blood products (5). The JW community actively instills the importance of this prohibition, encouraging members to carry “blood refusal cards” and execute Advance Directives detailing their wishes regarding blood. This extends to their children who are aware of the prohibition (6,7). JW who accept blood may be subject to repercussions within their community, which reportedly can include shunning (8).

Given the inherent challenges in obtaining bloodless care, the JW community has become sophisticated in healthcare matters. JW Hospital Liaison Committees (HLCs) operate in 110 countries around the world, including 1,700 chapters within the United States (9). HLCs, comprised of male elders, aid patients and families by providing spiritual and practical assistance in the hospital, as well as aiding healthcare providers. In this role, they may offer literature on bloodless techniques, assist with consulting providers experienced in bloodless care or help with arranging transfer to other facilities. HLCs also provide educational lectures to providers and staff on working with JW families.

Legal Landscape

Minors (i.e., individuals under the state-specific age of consent, usually 18) generally cannot provide consent for or refuse medical treatment. States vary on exceptions to this rule (e.g., many states carve out specific types of care that minors may consent to on their own—such as sexually transmitted infection treatment) (10). In the majority of cases, however, a parent must provide consent or refusal.

This principle is not absolute, as is the case when a JW parent refuses blood for their minor child. While the U.S. Constitution protects the freedom to practice religion, courts have not interpreted that freedom to include the right to refuse lifesaving treatment for a child on the basis of that religion (11). Instead, courts confronted with the issue have upheld a hospital’s ability to provide blood even against a parent’s wishes (11). Some states even have specific laws that authorize a court to order treatment under certain circumstances, though such laws are not required since a court can make an independent determination based on the state’s inherent interest in protecting the child (11,12,13).

Exception for Mature Minor

There is one notable exception for cases that involve adolescents. In a minority of states, a “mature minor” doctrine allows minors who demonstrate a requisite level of maturity the right to consent for, and potentially refuse, treatment (14). While 17 states recognize the doctrine to varying degrees and in different settings, only a handful of the states have allowed an adolescent to refuse live-saving treatment (14). Outcomes vary based on state-specific legal precedent and the facts (e.g., genuineness of the religious belief, whether treatment would be curative) (15). In one of the most well-known recent cases, a 14-year-old JW in Washington State was allowed to refuse blood products, ultimately leading to his death, despite the fact that blood transfusions likely would have saved his life (16).

In practice, when blood is emergently needed to save a minor’s life, hospitals likely will provide the blood and document it in the patient’s medical record. After the emergency ends or in non-emergent or chronic condition situations, hospitals typically seek a court order to provide blood products. The court will generally hold a hearing, allowing the hospital and the parent and/or minor to explain their positions. The judge then makes a determination, issued via court order, which should be entered into the patient’s medical record.

Practical Tips

Risk managers should consider the following when working on these challenging cases:

  • Blood refusal by JW not a given. Not all JW ascribe to the blood prohibition, so healthcare providers should not assume a self-identified JW will refuse blood (17). It is important to discuss the need for blood privately with both the parent and the patient (if appropriate), as the presence of other JW (including close family members and HLC members) may make the parent or patient feel pressured to refuse.
  • Nontraditional consent. Although rare, some adult JW have reportedly appointed a non-JW to provide consent on their behalf (18). Similarly, a JW parent may be amenable to temporarily delegating another individual the power to consent for their child’s transfusion.
  • Transfer or collaboration considerations. Ensure that the care team has considered whether collaboration with or transfer to another facility with more experience in bloodless techniques is an option. The HLC, if involved in care, can be a valuable resource in arranging for consultation or coordinating transfer.
  • Continual and critical assessment. Providing blood is often done as a matter of course based on hospital protocol or when laboratory values reach a certain threshold. In cases involving a JW, the care team should continually and critically assess the patient’s condition and options to determine whether withholding blood or alternate options might be medically appropriate.
  • Patient and family inclusion. Healthcare providers may discount the importance of communicating with the patient and the family since, in the end, the hospital will often be able to provide blood. Despite this, risk managers should ensure that, at every hospitalization, the patient and family are: (A) given the opportunity for their wishes to be heard, (B) given a clear explanation of the hospital’s position and any obligations that the hospital has under law or policy and (C) informed of and kept updated on the hospital’s actions (g., seeking a court order).
  • Child protection considerations. The majority of states specifically exempt treatment refusal on religious grounds from the definition of child neglect. If this is true in your state, child protection authorities should not be contacted based solely on a JW parent’s refusal of blood (12).
  • Court preparation. If your hospital does seek a court order:
    • Work with the court and/or hospital legal counsel to prepare. Beyond assistance with forms and procedures, ask the following: will the court accept testimony from any member of the care team (g., social work, case management) or does it require the attending physician? Will the court accept a written statement or telephone testimony or is in-person testimony required?
    • Generally, the court order will relate only to the provision of blood products and the parent will retain all other parental rights, including the right to consent for (or refuse) other types of treatment. When court is involved, a parent sometimes mistakenly believes that their parental rights are broadly being taken away, a distressing misconception.
    • If given the opportunity to propose language for the court order, draft one that authorizes blood products throughout the admission or condition (g., long-term treatment for leukemia) to prevent return trips to court.

Conclusion

Care teams should work closely with patients and families from the JW community to ensure that, while the hospital may need to provide blood with or without court proceedings, it can be handled in a positive manner. Risk managers should encourage the entire care team to approach these cases with an open mind and transparency, with a focus on clearly communicating the hospital’s obligations and plans while minimizing the patient’s or family’s fears of repercussions (whether from the JW community, the hospital, or the court/legal system).

References

  1. Cruzan v. Director, Missouri Dep’t of Health, 497 US 261 (1990).
  2. We use “parent” throughout as shorthand for parent(s) or guardian(s).
  3. Watchtower Bible and Tract Society of New York, Inc. (2016) 2017 yearbook of Jehovah’s Witnesses: 2016 grand totals. Retrieved from https://www.jw.org/en/publications/books/2017-yearbook/2016-grand-totals/
  4. Watchtower Bible and Tract Society of New York, Inc. (2016) 2017 yearbook of Jehovah’s Witnesses: 2016 service year report of Jehovah’s Witnesses worldwide. Retrieved from https://www.jw.org/en/publications/books/2017-yearbook/jehovahs-witnesses-service-report-2016/
  5. For example, Genesis 9:4: “Only flesh with its soul—its blood—you must not eat”; Leviticus 17:14: “You must not eat the blood of any sort of flesh, because the soul of every sort of flesh is its blood. Anyone eating it will be cut off”; Acts 15:20: “Abstain . . . from blood.” See JW.org, (n.d.) What does the Bible say about blood transfusions? Retrieved from https://www.jw.org/en/bible-teachings/questions/bible-about-blood-transfusion/. The official JW stance is that while whole blood products are prohibited, it is up to the individual to determine whether they will accept blood fractions (g., gamma globulin, interleukins)—under the theory that “at some point fractions that have been extracted from blood [may] cease to represent the life of the creature from which the blood was taken.” Use of certain blood techniques (e.g., hemodilution, cell salvage) is also up to the individual’s determination. JW.org, Keep yourself in God’s love, appendix: blood fractions and surgical procedures. Retrieved from https://wol.jw.org/en/wol/d/r1/lp-e/1102008086
  6. Watchtower Bible and Tract Society of New York, Inc. (2005) Could your child make a mature decision? Our kingdom ministry, 48(12). Retrieved from https://www.scribd.com/document/303664572/Watchtower-Kingdom-Ministry-2005-issues
  7. Watchtower Bible and Tract Society of New York, Inc. (2015) She stuck to her beliefs. Awake! Retrieved from https://wol.jw.org/en/wol/d/r1/lp-e/102015286
  8. Smith S. (2016) Jehovah’s Witnesses incapable of free, informed refusal of blood, former adherent says. CBC News (Montreal). Retrieved from http://www.cbc.ca/news/canada/montreal/jehovah-s-witnesses-incapable-of-free-informed-refusal-of-blood-former-adherent-says-1.3829778
  9. org (2012) Hospital liaison committees for Jehovah’s Witnesses. Retrieved from https://www.jw.org/en/medical-library/strategies-downloads/hospital-liaison-committees-jehovahs-witnesses/
  10. Guttmacher Institute (2018) An overview of minors’ consent law. Retrieved from https://www.guttmacher.org/state-policy/explore/overview-minors-consent-law
  11. Woolley, S. (2005) Children of Jehovah’s Witnesses and adolescent Jehovah’s Witnesses: what are their rights? Archives of Disease in Childhood 90(7), 715–719. doi:10.1136/adc.2004.067843
  12. Sandstrom A. (2016) Most states allow religious exemptions from child abuse and neglect laws. Retrieved from http://www.pewresearch.org/fact-tank/2016/08/12/most-states-allow-religious-exemptions-from-child-abuse-and-neglect-laws/
  13. National District Attorneys Association (2015) Religious exemptions to child neglect. Retrieved from http://www.ndaa.org/pdf/2-11-2015%20Religious%20Exemptions%20to%20Child%20Neglect.pdf
  14. Coleman D.L., & Rosoff P.M. (2013) The legal authority of mature minors to consent to general medical treatment. Pediatrics 131(4), 786-793. doi:10.1542/peds.2012-2470
  15. Blake V. (2012) Minors’ refusal of life-saving therapies. AMA Journal of Ethics: Virtual Mentor 14(10) 792-796. doi:10.1001/virtualmentor.2012.14.10.hlaw1-1210
  16. Raftery I. (2015) When a 14-year-old chooses to die because of religion, can anyone stop him? KUOW News and Information. Retrieved from http://kuow.org/post/when-14-year-old-chooses-die-because-religion-can-anyone-stop-him
  17. See, for example, the Advocates for Jehovah’s Witness Reform on Blood (AJWRB), a group of dissident JW who do not ascribe to the blood prohibition.
  18. Karkowsky C.E. (2013) How I treat patients who refuse blood transfusions. Slate. Retrieved from http://www.slate.com/articles/health_and_science/medical_examiner/2013/06/jehovah_s_witness_blood_transfusions_how_a_doctor_works_around_doctrine.html

 

Denise Winiarski, JD, CPHRM, Associate General Counsel at the University of Michigan, advises Michigan Medicine, the University of Michigan’s academic medical center, on risk management and litigation issues.

Emily Klatt, JD, is Associate General Counsel at the University of Michigan, advising Michigan Medicine on regulatory matters.

Amir Kazerouninia, MD, PhD is a graduate of the University of Michigan Medical School and an internal medicine/pediatrics resident at Baylor College of Medicine / Texas Children’s Hospital.

 

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