Case Studies

LJ

Pentecostal beliefs. Her family brought her, under protest, to a large urban medical center when they discovered she walked with great difficulty. On her left food was an erosive and festering black mass, diagnosed as malignant melanoma. LJ stated that five years earlier, she first noticed this lesion, she had assumed it was a cancer. She had carefully concealed the lesion from her family because she had no desire for, nor belief in, medical care. Specifically, LJ was certain that doctors would want to amputate her foot, and she would never agree to such a treatment. LJ’s doctors identified a host of other medical problems, including a significant blood clot in her leg, a resulting leg infection, and fever. LJ accepted hospitalization and initial treatment, including hydration and antibiotics. After pathology confirmed that the lesion on her foot was malignant melanoma, the doctors told LJ that the required emergent amputation of her left leg below the knee. Without amputation, she might soon die from either the infection or a pulmonary embolus formed by the blood clot in her left leg. Amputation would also halt the spread of her melanoma if it had not already metastasized. LJ, however, refused amputation vehemently for religious reasons. Not convinced of the severity of her condition, LJ began to refuse blood draws, antibiotics and other medications.

LJ has a close and supportive family of three daughters and one son, all of whom are alarmed she is refusing medical care, but only one of her daughters believes that the physicians should not allow LJ to refuse care, saying the choice is akin to suicide, that it is ‘crazy,’ and that she might go to court to force her mother to accept amputation. The staff caring for LJ also object to her refusal of amputation and to her reasons for it. Physicians believe she will have a 50% chance of survival for 5 years if she accepts the surgery. LJ has grown increasingly irascible at the medical staff, refusing them to speak to her and threatening to throw food trays at them if they bring up the subject of amputation. One doctor referred to her refusal as a tragic ‘delusional belief in the healing power of Jesus.’ Another doctor believes that if she refused treatment, she should be immediately discharged for fear of a liability should she suffer a rapid deterioration as a result of nontreatment.

--By Tia Powell

Jean McGuire

Jean McGuire is a seventy-one-year old profoundly mentally disabled woman with the mental age of a two year old. A lifelong resident of a state institution, she was hospitalized because of a mild fever that resisted standard treatment. She has been in the hospital for nearly three weeks undergoing a battery of invasive and uncomfortable diagnostic procedures: two bone marrow biopises, a barium enema, and a fine needle lymph node bipsy had all been performed, and their results had been inconclusive. Ms. McGuire has been placed with a PEG tube because she had been losing weight. After some of her worst experiences, Ms. McGuire had been seen whimpering and crying for days. She spends most of her time in the hospital curled up in a fetal position, with the blankets drawn over her head. Before her hospitalization Ms. McGuire was reported to be capable of enjoying the company of others and enjoyed the facility she resided in. The director of her facility said that she reacted with obvious displeasure during even routine medical examinations, often needing to be held by an assistant. Though the physicians are unsure of her exact diagnosis, they suspect she has high grade large-cell lymphoma. Treatment for this would include six to eight course of chemotherapy with its burdensome side-effects. With treatment, up to 70 percent of patients have measure improvement of symptoms, but only 30 percent can expect long-term remission. Ms. McGuire’s physicians and facility direct wonder whether the treatment will do more harm than good.

Ian Bykovsky

Ian Bykovsky is a twenty-six-month-old child of recent immigrants from a former Soviet-bloc country. He had been a well child, but, because of fever and cough, he was taken for a pediatric visit. Physical examination and laboratory studies led to a presumptive diagnosis of acute lymphoblastic leukemia. Ian was admitted to the hospital, and the diagnosis was confirmed by bone marrow aspirate and biopsy.

Communication with Ian’s parents is complicated because neither speak English. A family member who does speak English attended meetings between the physician and Ian’s parents, to interpret the explanation of Ian’s condition and the medical recommendations. They physician explained that standard treatment for Ian’s condition included one month of inpatient treatment with steroids and chemotherapy, followed by two years of weekly outpatient treatment with steroids and chemotherapy. A Broviac catheter would be necessary as well as a series of spinal taps. The physician explained that with this standard course of treatment, Ian had an 80 percent chance of permanent remission. The physician also explained that the side-effects of the treatment would include hair loss and nausea, as well as some long term effects on Ian’s learning ability and heart function were possible, but they should be minor. Mr. and Mrs. Bykovsky decided they did not want this treatment and provided a number of reasons for their position. First, they said that the treatment would be a long and painful ordeal to put a child through, they were also concerned about the spinal taps. They were also afraid of being responsible for Ian’s home care, particularly using the Broviac catheter. They spoke of the easier acceptance of life and death in their native country, and how people there typically have large families, in part from an expectation that not all children would survive to maturity. In their country, people are less likely to rely on aggressive medical treatment when a grave diagnosis is given. Mr. and Mrs. Bykovsky could accept that Ian’s life would be shortened by their decision, but they preferred tat to subjecting him to the horror of treatment. Furthermore, Mr. and Mrs. Bykovsky said that they were guided in their decision by the deep religious convictions of their Pentecostal faith, that the hand of God would decide Ian’s fate. The Bykovskys are told that if there leave the hospital against medical advice that a child protective agency might authorize Ian’s treatment over their objection. They respond that they left a totalitarian state for America because of the promise of religious and personal freedom, and that this kind of interference by the state in their family’s life was exactly what they thought they had escaped.

--by Jeffrey Spike and Jane Greenlaw

Ben Garrett

Case of Ben Garrett: Cleft Lip and Palate[1]

Ben Garrett is an otherwise healthy 15-month-old boy born with a cleft lip and palate. His mother left when he was just a few weeks old and Jordan has since been living with his single father, Mr. Garrett. While he received he did receive standard vaccinations as an infant, Jordan did not pursue any other medical care for his son. When Ben’s doctors brought up corrective surgery, Mr. Garrett would put off the conversation, saying “he’d think about it”.

Typically, corrective surgery is done between 6 weeks and 9 months to maximize the child’s ability to develop normal speech patterns. Ben has already demonstrated speech difficulties, alongside other common effects of cleft lip and palate, including repeated ear infections and poor growth. Doctors agree that while not ideal, Ben’s clinical prognosis without surgery is neither life-threatening nor severely disabling. He will, however, probably always have a noticeable speech impediment and have some minor trouble feeding.

Concerned the child will soon be too old for surgery to have beneficial effects on Ben’s speech and growth, Ben’s physicians re-approach Mr. Garrett about corrective surgery at 15 months. This time Mr. Garrett refuses outright, saying that prayer is much more effective at healing Ben than invasive surgery. The risks of surgery are minimal to moderate with the only significant risk being a possible adverse reaction to anesthesia (5% chance of happening, but if it happens, it could be fatal for Ben).

Should the state intervene and mandate corrective surgery for Ben?

[1] Author: E.K. Salter, PhD (2013).

Bernice Mettack

Case of Bernice Mettack[1]

Adolescent Refusing Blood Transfusion Against the Wishes of His Parents

Bernice is a bright, thoughtful and outgoing 17-year-old female. When she was 15, she became a Jehovah’s Witness, despite her family’s skepticism. She has been a committed and faithful member of the church since her conversion. At age 17, Bernice is diagnosed with immune thrombocytopenia, an autoimmune disease that interferes with the blood’s ability to clot. As a result, Bernice’s immune system is attacking its own platelets, causing a low platelet count. For the first couple weeks, physicians treat Bernice’s disease with corticosteroids, which slow platelet destruction. However, her condition continues to worsen and doctors decide a blood and platelet transfusion is the most effective mode of treatment. Bernice’s parents agree to the transfusion, but Bernice adamantly objects claiming that if she accepts blood products she will be forfeiting eternal life. The medication alone is expected to be 35% effective at treating Bernice’s thrombocytopenia effectively, with minimal side effects. The blood transfusion is expected to be 90% effective at treating Bernice’s disease, with minimal side effects.

Should the physicians follow Bernice, and treat her only using medication, or should they follow her parents and force Bernice to receive a blood transfusion, against her considered wishes?

[1] Author: E.K. Salter, PhD (2013)

Colin Newmark

Case of Colin Newmark: Refusal of Chemotherapy for Lymphoma[1]

At three years old, Colin Newmark developed an aggressive and lethal form of pediatric cancer known as Burkitt’s Lymphoma. Colin’s doctors recommended that Colin be treated with a heavy regimen of chemotherapy, stating that chemotherapy offered Colin a 40% chance at surviving at least eight more years. Without chemotherapy, he would almost certainly die within one year. His parents decided that instead of allowing an uncertain and painful medical treatment, they would take Colin home and seek prayer-healing through their church.

Should the state intervene and compel chemotherapeutic treatment for Colin?

[1] Author: E.K. Salter, PhD (2013), based on court case Newmark v. Williams/DCPS, 588 A.2d1108 (1991).

Kevin Sampson

Case of Kevin Sampson[1]: Surgery for Neurofibromatosis

Kevin Sampson is a 15-year-old boy with neurofibromatosis (also known as “elephant man’s disease”) which manifested as a large, bag-like benign growth causing one side of his face to be twice as large as the other. Kevin had fallen severely behind in school and functionally illiterate, in part because he had left school at an early age, finding the taunting of his classmates to be unbearable. Kevin’s mother refused to consent to the surgical excision of his growth not based on the operation itself, but the high likelihood that Kevin would need blood products during the surgery, which her Jehovah’s Witness faith did not permit.

Kevin’s neurofibromatosis is not fatal and only causes mild to moderate clinical problems (head aches, balance problems). However, his physicians are more worried about the relational and emotional (and indirectly, intellectual) issues caused by the growth. Removal and reconstructive surgery carries a 95% success rate of both removing the growth and restoring a normal appearance (with a small scar). However, there is a small but significant risk of complications from anesthesia (5% chance of a fatal reaction). There are no alternative treatments for the physicians to consider.

When asked, Kevin states that he is desperate to have the growth to be removed. He is tired of being ridiculed and shunned.

Should the state intervene and compel surgical removal of Kevin’s growth?

[1] Author: E.K. Salter, PhD (2013). Based on In re: Sampson 278 N.E.2d 918, 1970.