Q: You are consulting on a 7-year-old girl who was admitted for several generalized seizures resulting from severe anemia from an actively bleeding colonic neoplasm. Her admission hemoglobin was 3.8 grams/dL. She needed urgent blood transfusions and surgery to remove the bleeding neoplasm. Her parents were Jehovah's Witnesses, and she and her two older siblings were being raised in that faith group. Her parents insisted that, according to the teachings of the church, she be treated aggressively with all medical therapies except for receiving blood or blood products. What should her physicians do?
DR. JAMES L. BERNAT RESPONDS:
Physicians managing an acutely ill Jehovah's Wit-ness patient need to know and understand the belief system and respect the adult patient's right to refuse therapies that are not permitted by their religious doctrine. It is generally known that Jehovah's Witness patients refuse treatment with blood or any blood product such as plasma, platelets, packed red blood cells, clotting factors, IV-immunoglobulin (IVIG), and albumin. They also are not permitted to bank their own blood in advance of transfusion need (for example, for scheduled elective surgery), and then receive a transfusion of their own banked blood. This religious proscription bans all blood and blood products of any source from entering their body.
The biblical religious proscription derives from the book of Acts, chapter 15, verses 28 and 29: “For the holy spirit and we ourselves have favored adding no further burden to YOU, except these necessary things, to keep abstaining from things sacrificed to idols and from blood and from things strangled and from fornication. If YOU carefully keep yourselves from these things, YOU will prosper. Good health to YOU!”
Jehovah's Witness religious authorities interpret these and other biblical passages related to consuming blood as an injunction by God prohibiting all blood from entering the body under any circumstances. This proscription typically includes not only whole blood but also all blood products and fractions. As an acceptable medical alternative to blood transfusion, Jehovah's Witness religious authorities propose “transfusion-alternative health care.”
Physicians have responded by developing guidelines for managing hypovolemic shock from blood loss or anticipated blood loss from surgery in Jehovah's Witness patients. Medical treatments consistent with their religious beliefs, and therefore usually acceptable, include plasma expansion by non-blood products such as lactated Ringer's solution or other crystalloid solutions, pro-hemostatic drugs such as tranexamic acid, erythropoietin, vasopressors, iron dextran, ferric gluconate, and intraoperative blood conservation techniques such as using a cell saver. Non-blood-derived oxygen-carrying molecules and other substances are undergoing investigation as potential treatments. Despite the blanket proscription, some Jehovah's Witness patients will accept coagulation factor concentrates or other products so this possibility should be explored.
Surgeons and intensivists have published accounts of heroic rescues of Jehovah's Witness patients who were treated without transfused blood or blood products, including open-heart surgery; subtotal colectomy for massive lower gastrointestinal bleeding, and acute bleeding and other conditions leading to severe anemia and hypovolemic shock. The entire subject of the physiology of hypovolemic shock and extreme anemia has been revisited in the context of trying to manage these patients with a trend toward lowering the critical threshold for blood transfusion.
American society affords a high level of respect to personal religious beliefs. In the case of Jehovah's Witness adult patients who refuse transfusion with blood or blood products, physicians routinely honor this refusal of therapy. In the case in which a patient might die without a transfusion of blood or blood products, the patient needs to be carefully counseled to know that death is possible or probable, and all aggressive alternative treatments should be undertaken that are permissible by the dictates of the religion. Some hospitals require patients or their family members to sign an explicit written refusal of therapy stating that death may result.
As a hospital ethics consultant, I have had disquieting personal experience of seeing two Jehovah's Witness patients die as a consequence of otherwise treatable conditions after they adamantly refused transfusion of blood or blood products and could not be saved by heroic alternative treatments.
However, our society does not extend this same level of respect of adult religious beliefs to the minor children of Jehovah's Witnesses when they are likely to die without blood transfusions. We do not presume that minor children share the same belief system as their parents in adhering to a religious doctrine that may produce their death rather than to receive a blood transfusion. In these cases, the parens patriae (“parent of the nation”) function of the state is invoked to protect vulnerable children from preventable harm when one knows they are at risk. This is the same legal doctrine that authorizes state agencies to remove children from abusive or neglectful parents to protect them from known harm at home.
There is an established tradition in the United States for physicians to seek a judicial order mandating life-saving transfusion if the parents refuse consent on religious grounds for their minor children. In my experience, judges hearing these cases require physicians to testify that the minor patient is likely to die or suffer grievous harm without the transfusion and that alternative treatment measures are inadequate. The process of seeking a court order can be conducted expeditiously as is appropriate for a medical emergency. In our hospital, we can contact the local judge by telephone, explain the case to him, and receive an immediate court order mandating treatment.
One memorable experience in which I performed an ethics consultation on a minor patient whose Jehovah's Witness parents refused consent for blood transfusion yielded an unexpected outcome. After the bioethics committee requested and obtained a court order mandating treatment, rather than being angry or resentful with us for superseding their parental authority through the judiciary, the parents were relieved that their child would survive. It became clear to us in retrospect that they felt compelled to refuse blood transfusions on behalf of their child for them to remain true to their religious beliefs. But once the responsibility was removed from them and their refusal of transfusion on behalf of their child was overruled by a judge, they were happy that the child survived and that their conscience as religious believers remained clear.
NEED HELP WITH A TOUGH ETHICAL PRACTICE DECISION?
Are you looking for advice or direction in handling a challenging ethical quandary or challenge in your neurology practice? Dr. Bernat and others with expertise in neuroethics are available to answer your questions. Submit your questions and ideas for topics for Ask the Neuroethicist to neurotoday@LWWNY.com.
James L. Bernat, MD, is the Louis and Ruth Frank Professor in Neuroscience and professor of neurology and medicine at Dartmouth Medical School. He is the former chair of the AAN Ethics Law & Humanities Committee and is the author of Ethical Issues in Neurology, 3rd ed. (Lippincott Williams & Wilkins, 2008).
The Book of Acts, Chapter 15, verses 28,29: The Watchtower
, Accessed May 1, 2011
“Transfusion: Alternative Health Care,” The Watchtower
: Accessed May 1, 2011
Berend K, Levi M. Management of adult Jehovah's Witness patients with acute bleeding. Am J Med 2009;122:1071–1076.
Donahue LL, Shapira I, Greenburg G, et al. Management of acute anemia in a Jehovah's Witness patient with acute lymhoblastic leukemia with polymerized bovine hemoglobin-based oxygen carrier: a case report and review of the literature. Transfusion
El Azab SR, Vrakking R, Rosseel PM, et al. Safety of cardiac surgery without blood transfusion: a retrospective study in Jehovah's Witness patients. Anaesthesia 2010;65:348–352.
Rama SR, Parithivel VS, Cosgrove JM. Emergency subtotal colectomy in a Jehovah's Witness with massive lower gastrointestinal bleeding: challenges encountered and lessons learned. Am J Crit Care 2011;20:176–178.
Vaziri K, Roland JC, Fakhry SM, et al. Extreme anemia in an injured Jehovah's Witness: a test of our understanding of the physiology of severe anemia and the threshold for blood transfusion. J Trauma 2009;67:E11–13.
Vinicky JK, Smith ML, Kozachuk WE, et al. The Jehovah's Witness and blood: new perspectives on an old dilemma. J Clin Ethics 1990;1:65–70
©2011 American Academy of Neurology