Case Study: Making Room for Alternatives (2000)

RS is a ten-year-old Hmong (Southeast Asian) boy with a long history of hemodialysis for end-stage renal disease and hypertension. His parents clearly cared deeply for their son and had been compliant with treatment, but were suspicious about his medical care and his need to continue dialysis. Without notifying their pediatric nephrologist, they took their son off dialysis and traveled to a medical center several hundred miles away. When RS failed to appear for his appointments, a referral was made to Children's Protective Services (CPS). When RS's records were requested by the consulting medical center, CPS was contacted and they intervened by removing RS from his parents' care and placing him in a temporary foster home. RS resumed his dialysis and his parents cooperated with family reunification counseling and agreed to comply with all required medical care. RS was returned to his family several weeks after placement but this incident clearly increased his parents' distrust of the medical team. Several months later, RS was admitted to the hospital after becoming febrile. The line used for his dialysis was infected with Staph. aureus. A routine chest X-ray revealed a complete opacification of his left chest. A chest tap was performed and it revealed that RS had a hemothorax with old, thickened blood surrounding his left lung. A surgical consult suggested that he would require immediate surgery to clear out the blood so that his left lung could possibly return to function. At first, RS's family agreed to this procedure, but they changed their mind after a few hours and rescinded their consent. RS's family, communicating through a translator, stated that they felt that the blood was the result of RS's poor care by his physician and that the hospital wanted to do the surgery to destroy the evidence. They also communicated a strong desire to have RS receive Hmong shaman intervention to treat his lung. An ethics consultation was requested and the options were reviewed. Some members of the treatment team felt that CPS should remove RS from his family and place him in foster care permanently to assure compliance with medical care. Others were less sure that the hemothorax was treatable with surgery--the blood had been present for quite some time and may have permanently affected his left lung. The hospital has a long tradition in working with children of Hmong ancestry and agreed to invite the shaman to come to the hospital to provide alternative treatment. Traditional Hmong health practices are based on the belief that spirits cause illness and that spiritual healing can remove their harmful influence. Healers in the community specialize in treating various specific spiritual illnesses, using a variety of herbs and roots, which are often boiled and made into a tea. The healer may also tie a spirit string around the wrist of the ill person to ward off harmful spirits, or at times perform animal sacrifices to appease the spirits. As some treatments involve the need for heating or igniting different materials, it was suggested that RS's bed could be moved to a interior courtyard of the hospital during these procedures. However, the Hmong shaman told RS'S family that he felt it would be best if RS were discharged home so that he could conduct the ritual healing on a daily basis over a seven to ten-day period. A second ethics consultation session was held and the physician agreed to discharge RS home for shaman treatment. The family agreed to attend a formal ethics meeting three days after discharge so that everyone's concerns could be aired completely. At the meeting, RS's parents reported that the shaman said that if he successfully treated the lung, the cause of the bleeding was spiritual in nature and they should continue to work with RS's doctors. If he was unsuccessful, RS's family was led to believe that the bleeding was then caused by the doctor's poor practice of medicine and they would not want to continue dialysis. …