When a Patient's Belief System Affects His Care

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The Patient

Brian J. is a 42-year-old male without significant prior medical history who presented to the Emergency Department with acute onset of right upper quadrant pain several hours after consuming a meal at a fast food restaurant. He described the pain as sharp in nature, with radiation to his right shoulder. He also complained of nausea, with two episodes of non-bloody emesis. He had no recent change in bowel function, and denied hematochezia or melena. He denied fevers, but had some chills and diaphoresis. He had no known drug allergies and took no medications at home. He denied alcohol, tobacco, or illicit drug use. He was married with one child, college-educated, and worked in an office performing computer technical support. Family history was noncontributory.

On physical exam, there was a low-grade fever and stable vital signs. He was anicteric and mucous membranes were moist. Heart and lung exam were unremarkable. His abdomen had slightly hypoactive bowel sounds, was non-distended, and was markedly tender in the right upper quadrant with a positive Murphy's sign. Rectal exam was normal with negative hemoccult testing. Extremities were warm and well-perfused, without edema. Neurological exam was grossly non-focal.

Laboratory evaluation was notable for a mild leukocytosis, transaminitis, and elevated alkaline phosphatase. Chest radiograph and electrocardiogram were normal. A right upper quadrant sonogram showed the presence of multiple gallstones, gallbladder wall thickening, and surrounding edema, all consistent with a diagnosis of acute cholecystitis. Brian was admitted to the general medical-surgical floor, made nil per os, and started on intravenous fluids and antibiotics. A surgical consult was called to evaluate for cholecystectomy.

The Ethical Dilemma

When the surgical resident was consenting Brian for cholecystectomy and described the risks and benefits of the procedure, one of the risks was the potential for bleeding. Brian told the resident that, as a Jehovah's Witness, he could not accept a blood transfusion were bleeding to occur. The resident stated to Brian that she was unsure if the surgical team could proceed with the surgery if the possibility of emergency transfusion were ruled out, and that she needed to discuss the matter further with her attending.

• Questions for thought and discussion: What are the beliefs of Jehovah's Witnesses regarding medical care and blood transfusion? Are any blood products ever allowable? Are blood substitutes acceptable?

• Questions for thought and discussion: If a Jehovah's Witness will not accept a blood transfusion in the case of significant bleeding, should an elective procedure be withheld from them? Should an emergent procedure be withheld?

• Questions for thought and discussion: In general, how much risk is acceptable to move forward with a procedure on a patient? How does one balance respect for a patient's belief system and yet offer the patient the best possible care?

The Medicine

About three-quarters of patients with acute cholecystitis will have their symptoms resolve within one week of initiating medical management alone. The others will require immediate surgical intervention due to development of a complication such as empyema, gangrene, or perforation. Of those managed initially without surgery, a majority (60%) are likely to have a recurrence of symptoms in the coming years. As a result, eventual surgical treatment of all patients who develop acute cholecystitis is generally considered to be the standard of care for those healthy enough to undergo the operation. Laparoscopic cholecystectomy has become the most popular surgical procedure to treat gallbladder stones in the United States since it was developed in 1988. Lee, et al. reviewed six papers that investigated complication rates from the procedure and noted that the risk of “major bleeding” from the procedure varied from 0.2 to 4.3 percent. Most major bleeds are due to injuries of the epigastric vessels, cystic artery, or the liver bed, and may result in conversion to an open procedure. Overall mortality for laparoscopic cholecystectomy is low, estimated between 0 and 0.13 percent.

Although they have no objection to medical care in general, or to surgery, Jehovah's Witnesses are not permitted to accept allogeneic or autologous (pre-stored) transfusion of whole blood, packed red blood cells, plasma, white blood cells, or platelets during surgery or otherwise. This is based on their deeply held belief that the Bible prohibits the “ingestion” of blood as cited in several Bible verses, such as “You must not eat blood” (Leviticus 7:26) and “Keep abstaining from blood” (Acts 15:29). The rules about accepting blood products are complex, however, particularly around topics such as cell salvage and blood cell tagging. Individual Witnesses should be asked what their wishes are regarding the use of blood products or fractions thereof. The official Jehovah's Witness website is a helpful resource for providers, and patients may want to consult with church leaders for advice.

An area of growing interest for Jehovah's Witnesses, as well as for others who do not want to receive transfused blood products, is so-called bloodless surgery. This often involves the administration of iron and/or erythropoietin preoperatively to bolster a patient's red blood cell reserves, the use of minimally invasive techniques and low central venous pressure anesthesia, the ligation or electrocautery of bleeding vessels intraoperatively, minimizing postoperative phlebotomy, and the use of non-blood volume expanders in the setting of shock. Some Witnesses will allow use of the Cell Saver, whereby autologous blood is salvaged during a procedure.

Blood substitutes not only offer another potential alternative to blood transfusion for Jehovah's Witnesses, but could also be a viable option for others who do not wish to receive banked blood. In addition, such products do not depend on blood bank supplies, significantly lower the risk of transfusing infectious agents, and virtually eliminate immune-modulated transfusion reactions. These products may function both as volume expanders and oxygen carriers. Hemoglobin-based solutions and perfluorocarbons are being researched as potential substitutes for red blood cell products, and are currently in various stages of development and trials.

The Law

Case law in states throughout the country has established the legal right of adult Jehovah's Witnesses to refuse blood transfusions based on their religious beliefs, even if the refusal is likely to result in death. The case of Public Health Trust v. Wons (1989) concerned a Witness who refused a blood transfusion for uterine bleeding. The hospital was permitted by the circuit court to give the transfusion, against her will, because she had two minor children. However, the Florida Court of Appeals and the Florida Supreme Court both ruled that the state's interest in preserving life and providing a home with two parents for the minor children did not override the patient's constitutional rights to practice her religion and to privacy.

The Patient Self-Determination Act (1990) has also strengthened the right of Jehovah's Witnesses to refuse blood products. This federal law requires health care institutions receiving Medicaid and Medicare funds to provide written information to all adult patients concerning their rights to make decisions about their medical care, “including the right to accept or refuse medical or surgical treatment.” With this law in place, there is little doubt that a competent adult Witness must be permitted to refuse blood transfusions.

The Ethics

The surgical team will need to consider the risks and benefits of doing this surgery without the possibility of an emergency blood transfusion. Using the Principle of Beneficence they will consider the good promoted, such as a return to good health for Brian, and the harm removed and prevented, including severe pain, infection, and the possible perforation of the gallbladder. Of particular importance, in this case, is the Principle of Non-Maleficence which requires the practitioners to avoid causing harm to their patients. Attempting this surgery without the option of a blood transfusion may risk having uncontrolled bleeding and possibly result in death. Comparing these risks and benefits, the surgical team will need to determine what would be in Brian's best interests.

The surgical team may decide to attempt the surgery, even under this restriction, given the low rate of a major bleed and the low mortality rate. There are two things they could do, however, to minimize these risks. First, they could talk with Brian about his willingness to accept components such as albumin and blood substitutes. They should also let him know that, if a bleed occurs, they may need to convert to an open procedure to enable use of methods other than a transfusion to control the bleeding. They should ask for his consent to change the procedure, in case this becomes necessary.

The Principle of Respect for Autonomy is particularly important in this case as the basis for the Patient Self-Determination Act and the court rulings that permit Jehovah's Witnesses to refuse blood transfusions. Brian has agreed to the recommended surgery, but has refused one aspect of the standard of care for that particular surgery. According to this principle, Brian must be allowed to refuse the transfusion of blood products.

However, the principle does not mean that the surgical team is required to go ahead with the surgery under this condition. This principle only permits capable patients to accept or refuse recommended treatment. If the surgical team decides not to attempt the surgery without the option of a blood transfusion, they will need to notify Brian that their recommendation is that he have the surgery with the possibility of a transfusion or not have it at all.

An essential part of respecting the autonomy of capable patients is the requirement of voluntary informed consent. Brian cannot make an informed decision to undergo the surgery without a blood transfusion, if needed, unless he is fully informed and understands the risks and alternatives as well as the expected outcome of not having the surgery at all. If the surgical team decides to go ahead with the surgery, they need to be careful and thorough in informing Brian of the increased risks and the possible alternatives for controlling a major bleed. It will also be important for Brian to sign a waiver that indicates his understanding of these risks and his willingness to undertake them.

The other essential principle in this case is the Principle of Respect for Dignity. Respect for Brian's dignity as a person requires respect for his religious beliefs and his deep commitment to them. In the past physicians have sometimes been judgmental about the religious beliefs of Jehovah's Witnesses and refused to proceed with needed surgery because of the limitations their beliefs placed on the established standard of care. This attitude is changing and is encouraged by the new Bloodless Medicine and Surgery Programs at many hospitals. These programs educate practitioners and support patients and practitioners as they develop treatment plans that meet the spiritual requirements of Jehovah's Witnesses. Often a nurse administrator will coordinate the program, work with elders of the church in exploring alternatives to the transfusion of blood products, and supervise nurses caring for Jehovah's Witness patients (“The Pregnant Jehovah's Witness,” 2005).

Early communication and planning for the care of Jehovah's Witnesses is essential. Even in the case of emergency surgeries, hospital administrators can be better prepared by meeting with the elders in their community to develop a program for providing respectful care to Witnesses in the area. These plans should include education for practitioners and a list of acceptable blood substitutes for various medical conditions and surgeries.

With such plans in place, it should not be necessary to refuse to provide either elective or emergency procedures to Jehovah's Witnesses. Even without such programs or plans, practitioners should approach their Witness patients with respect for their religious beliefs. They will need to consider the risks and benefits of the procedures their patients need, with the restriction against blood transfusions, and try to provide the best care they can within these restrictions. They should also explore the possibility of blood substitutes with their patients to reduce these risks.

In general, if the risks of the procedure without the option of providing blood products are equal to or less than the risks of forgoing the procedure, practitioners should proceed. The most important requirement, when risks need to be balanced, is to make sure the patient is fully informed of the risks that are being compared. Patients who are Witnesses may also choose to take greater risks with procedures performed without blood products than those they would face by forgoing these procedures altogether. In this case, practitioners need to decide for themselves if they want to proceed with these more risky procedures.

The Formulation

Now that the evidence-based medicine, legal precedent, and relevant ethical principles for this case have been reviewed, formulate a strategy to address the ethical conflicts in this case. If necessary, perform additional research into local and state laws and hospital regulations. Consider delving further into the background medical literature to assist with making sound therapeutic decisions. Devise a treatment approach that addresses the needs of the patient and his family, that is both ethically and medically sound, and that is culturally competent. Ensure that the strategy employs fair and appropriate utilization of medical resources, and that the approach is practical and feasible within the limits of the medical system at large. Work out a clear and professional way to communicate the proposal to the patient and his family. Attempt to foresee challenges that may arise in conveying or implementing the plan. Determine what follow-up will be necessary to ensure that the chosen strategy remains successful for the patient in the long-term. Reflect on how the knowledge and skills learned from this case can be used to improve the care of patients that may be encountered in future practice.

Afterthoughts

In this case a question arose about offering a procedure to a Jehovah's Witness patient if a complication such as bleeding may occur and blood transfusion was not an option. Are there any other situations in medicine where a patient's beliefs may interfere with what is considered standard of care? Are there any situations where a provider's belief systems affects their ability to deliver quality medical care to their patient?