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CASE 1: Mrs. Sakariye: Who is our patient? 24-year old woman from Somali whose labor is not going well but who adamantly refuses a cesarean section. CASE 2: Mr. Leary - Killing or allowing to die? 76-year-old man waiting for a nursing home placement who has a Keofeed tube in place. CASE 3: Joe Jones – Providing futile therapy in the ICU? Man with head and neck cancer who is in the ICU who wants everything to be done. CASE 4: Sammy – Too young and too small? Premature baby in the NICU whose parents are distrustful of the doctors and nurses. CASE 5: Heather – Can we ‘give up’ on a kid? 7 year old who got very sick, very quickly and it is unclear if she will survive. CASE 6: Mrs. Pearlman – would we be killing her or abiding by her wishes? Woman whose has been on TPN for 7 years and now is septic in the ICU. CASE 1: Mrs. Sakariye: Who is our patient? Mrs. Sakariye, a 24-year old woman from Somali, presented to the hospital in labor 18 hours ago at approximately 39 weeks gestation. This is her first pregnancy and has been uneventful. She obtained her prenatal care at a clinic within the university system. Mrs. Sakariye’s husband is currently working and going to school. They hope and plan to return to Africa in the next 5 years. Mrs. Sakariye speaks very limited English while her husband’s English is fairly good. She has no family in the United States but has made several friends within the Somali community. Since being admitted to the hospital, Mrs. Sakariye’s labor has progressed slowly. She is currently 3-4 cm dilated and 40% effaced. Fetal heart tones are being externally monitored. The baseline fetal heart rate has been around 145 for most of the labor and has shown normal variability. At about hour 18 and several times after that, the baby had some early decelerations to around 100 bpm (one reached 90 bpm but was associated with the need to reposition the external monitor and hence was considered suspect by the labor nurse). After another hour she was at 5-6 cm and 60% effacement however the baby had several more episodes of early decelerations to 90-100 and is began to show late decelerations. Meconium staining was noted in the amniotic fluid following these late decelerations. The medical team recommended an urgent cesarean section due to the clinical picture of relatively slowly progressing labor accompanied by probable fetal distress. They presented this recommendation to the husband who translated the information to his wife. After a brief discussion, the husband adamantly refused the C-section. Mrs. Sakariye also clearly and repeatedly said “no” and shook her head. The team and labor nurse again explained the urgency of the situation and the potential serious consequences to the baby. They had an interpreter come to the patient’s room and discussed the issue with the patient without her husband present through the translator. They were able to learn that she adamantly refused the C-section. After some discussion, the translator shared that the patient said she had heard that the university doctors wanted to practice C-sections and that members of her community had warned her that nearly everyone who came to the university hospital ended up with a Csection. She said that she wanted more children and that it was not safe to have vaginal births following a C-section. She also said that sometimes babies died during birth and that if this was what happened then she would grieve this loss. Sarah Shannon. Adapted from a local case. CASE 2: Mr. Leary - Killing or allowing to die? Mr. Leary is 76-years-old and had his first stroke three months ago. It was severe but he was making progress when he suffered a second stroke. After this he was quite depressed and aphasic with left-side paralysis. Three weeks ago he suffered a third stroke. While it worsened his physical condition somewhat, this third stroke seemed to improve Mr. Leary's mood. He is cooperative with care now, even attempting to assist with shaving each morning. Mr. Leary has no swallow reflex. Consequently, he has a Keofeed tube in place to administer nutrition and hydration that is tolerated well. His physician wrote that his prognosis for survival was probably less than a year due to the probability of continued cerebral events--but he might live as much as three to five years. Mrs. Leary is overwhelmed. Two nursing homes have been located by the social worker but she refused each, one was too far from their home (75 minutes drive) and one was too awful (the social worker concurred). In the three months of hospitalization since Mr. Leary’s first stroke, he has occasionally had a no code order. However, when his condition stabilizes he is changed to a partial code. These changes apparently follow discussion between the physician and Mrs. Leary although this discussion is not recorded in the chart. The nurses overheard conversations between the doctor and wife regarding the appropriateness of aggressive care. On Thursday, a representative from the hospital business office approached Mrs. Leary to inform her that on Monday Mr. Leary would be decertified by Medicare and that she would be responsible for hospital charges after that date. On Friday Mrs. Leary called the physician and asked that the Keofeed be withdrawn, something they had discussed on other occasions but which Mrs. Leary had previously refused. The physician phoned the unit and left a verbal order to remove the Keofeed, discontinue feeding, and to not attempt resuscitation. The nursing staff was very upset and called the physician back to discuss the order. He stated that, "this is congruent with the patient's stated values prior to the first stroke. The patient asked me not to over do it." The Keofeed was pulled Friday afternoon, although the nurses remained very distressed. On Sunday morning, the patient reached for a glass of water sitting by the bedside for mouth care (apparently from thirst) and aspirated. By Monday pneumonia was evident. Over the weekend arrangements have been made to transfer the patient to home to be cared for by his wife. Mrs. Leary was nearly hysterical. She had not been participating actively in her husband's care and now realized that she is physically unable to provide total care including turning, positioning, etc. Mr. Leary was discharged to home Monday afternoon significantly febrile. He died late Monday evening. Sarah Shannon. Adapted from a personal case. CASE 3: Joe Jones – Providing futile therapy in the ICU? Joe had been diagnosed with head and neck cancer 4 years ago. At the time he was told he had six months to live. Joe had beaten the odds for a while but had been admitted to the hospital two weeks ago in deteriorating health. A bowel obstruction was assumed to be metastasis of the original cancer but Joe refused to believe this. After much discussion, the surgeon agreed to do an exploratory laparoscopy to confirm the diagnosis. This procedure revealed over 100 sites of studding in the peritoneal cavity. Joe continued to deteriorate over the next 2 weeks but insisted that he wanted everything done including CPR in the event of an arrest. As his condition worsened, Joe required constant fluid resuscitation to maintain his blood pressure. As this fluid leaked into his peritoneum, pressure on his diaphragm compromised his breathing necessitating intubation and mechanical ventilation. In addition, Joe has needed to be placed on inotropic pressure support to avoid an arrest. The physicians involved in Joe's care agree that his prognosis is, at best, 2-3 weeks of life in the ICU. Joe has no family but many friends. His friends have visited and tell him to "give it up, it's over." Joe is fully competent and able to communicate by notes. A chaplain and psychiatrist visited Joe and determined that he does not seem to be motivated by any religious beliefs or untoward fears about death or dying. He is a watchful patient always monitoring any changes to the ventilator or drips. Each time the physician asks Joe whether he wants CPR, he indicates emphatically that he does. The nurses in the unit are upset that they must participate in what feels like futile care. Also, they are dreading the inevitable code. Sarah Shannon. Adapted from a personal case. CASE 4: Sammy – Too young and too small? Janelle and James Jones are both attorneys in their 40s. They were joyously awaiting the birth of their first child – which they expected several months from now. One night, they rushed to the emergency room with Janelle in hard labor after only a 25-week gestation. Despite the intervention of the hospital staff, their son Sammy was born prematurely, weighing just over 1.5 lbs. He required immediate medical attention and was put on mechanical ventilation in the NICU. He developed necrotizing enterocolitis and required surgery to remove part of his intestine. Within days of surgery, he had Grade 4 cerebral bleeding. Yet he hung on. Either Janelle or James was at Sammy’s NICU bedside nearly 18 hours a day. From birth, Janelle’s and James’ interactions with the NICU staff were problematic. It started when a nurse asked Janelle if she had obtained prenatal care. Janelle replied that the question was racist and that the nurse was clearly uneducated to not be aware that African Americans of all socioeconomic levels were at risk for premature and lowbirth weight infants. Whenever James visited Sammy in the late evening, he was frequently stopped by the hospital security and questioned. To make matters worse, a first year resident told the parents soon after Sammy’s birth that there was little hope he would survive and that they should prepare themselves for his death – yet Sammy did not die. The final blow was when Janelle discovered in Sammy's chart that he had been tested for cocaine and other drugs soon after birth. Janelle and James feared that hospital was not providing Sammy with the highest quality care available due to staff’s prejudice that they “caused” his premature birth through poor care or drugs. They also feared that the physicians were giving up on Sammy sooner than they would have given up on another child – in particular, a white child. Sarah Shannon. Adapted from a personal case. CASE 5: Heather – Can we ‘give up’ on a kid? Heather, an engaging 7-year-old, was brought to the ER with a sore throat that had rapidly worsened and was now threatening her breathing. She was alert and able to shake her head ‘yes’ and ‘no.’ She was admitted to the pediatric intensive care unit for treatment of impending septicemia. Triple antibiotic therapy was started immediately but within hours she required intubation and inotropic medications to support her blood pressure. Her condition continued to deteriorate over the next three days requiring increasingly aggressive treatment to support her cardiovascular functioning. The result of this treatment was that circulation had been comprised to her extremities. Both of her arms below the elbows and both legs below the knee would need to be amputated, should she survive. In addition, it was not clear she would survive. She remained unconscious, septic, and clinically unstable. On the 10th day of hospitalization, her parents requested that treatment be stopped. They said that they believed everything that should be done for their daughter had been done and that “God was calling her home.” They seemed calm and confident in their choice. The healthcare team was astonished by the parents’ request. No one had approached them about withdrawing therapy. While some clinicians agreed that the child’s prognosis was grim and future quality of life would be severely compromised, others felt that Heather deserved a chance to survive and conquer her disabilities as so many other pediatric patients demonstrated daily. Sarah Shannon. Adapted from a personal case. CASE 6: Mrs. Pearlman – would we be killing her or abiding by her wishes? Mrs. Pearlman had suffered a small bowel infarction 7 years prior requiring surgical removal of her entire small intestine. Subsequently, Mrs. Pearlman had been maintained on total parental nutrition (TPN) at home with the assistance of her large and supportive family. Mrs. Pearlman's general health had been declining for several years. While still entirely self care for the activities of daily living, Mrs. Pearlman had stated often that her quality of life was not adequate because of frequent bouts of the flu, colds, etc. In addition, the TPN had caused renal damage, which would necessitate chronic hemodialysis within one year. Mrs. Pearlman had clearly and repeatedly refused chronic dialysis (recorded in her medical record by her primary physician). Four days ago Mrs. Pearlman was taken by her family to the emergency room of their local community hospital with complaints of stomach pain. Within a short period of time her condition worsened and she was transferred to a tertiary care center to receive a CAT scan of her abdomen. Upon arrival Mrs. B "crashed" requiring intubation, mechanical ventilation, and inotropic support. She was transferred to the critical-care unit where she has remained for the past three days. At this time, Mrs. Pearlman is acutely septic requiring dopamine at 5-8 mcg/kg/min to maintain a systolic blood pressure of 80. She has had a 10 kg fluid gain with a urine output of less than 30cc per hour. Currently, Mrs. Pearlman's ventilator settings are FiO2 = 80, AC 12, TV 800, PEEP 10. Her arterial blood gases are adequate. She continues to spike temperatures to 103 degrees Fahrenheit but no source of infection has been found. Antibiotic therapy has been initiated including Gentamycin IV. Mrs. Pearlman is obtunded with minimal response to deep pain. Mrs. Pearlman's family is distraught. While their mother had not signed a Living Will, she had spoken frequently of not wishing heroic treatment, such as dialysis. Her family stated that they had promised her they would not allow "heroics." Sarah Shannon. Adapted from a personal case.