Andrea Gonzalez

Andrea Gonzalez is an 18-year-old single mother who works on a mushroom farm. Ms. Gonzalez was referred to a tertiary medical center for prenatal care when her fetus was found by her community health center to have low amniotic fluid, a sign of a birth defect. An ultrasound showed the unborn baby had extremely small kidneys and there was a significant chance that, after delivery, her kidney function would be insufficient for survival.

            The baby, Lynn, was spontaneously born at 38 weeks. Though full term, her bladder is completely absent and she has kidney failure. Despite these problems, she is able to produce some urine. She also has normal urethral, vaginal, and rectal orifices. She has no abnormalities of the nervous system to suggest that she will have problems walking and talking, or to suggest that she will be mentally challenged. She is able to breathe completely on her own and there is no evidence of any problems with the heart, lungs, or digestive system that would affect quality of life. The situation does not require an immediate decision, but clearly, medical intervention will be necessary if she is to be given some chance of a reasonably extended life. She was admitted to the Infant Intensive Care Unit for evaluation and management of her condition.

            The attending physician, Dr. Watson, is a neonatologist who is in charge of baby Lynns’ care. Dr. Watson does not think it possible to construct a bladder for her at this time. Dr. Watson called for a nephrology consult. The nephrologist, Dr. Hyde, sees only two possible options. Baby Lynn could be started on peritoneal dialysis with the intention of listing her for kidney transplant when her weight reaches 10 kg, or the team could recommend supportive care to help the mother keep her baby comfortable until she peacefully dies of kidney failure. In examining these options, Dr. Hyde believes that it is not possible for the mother to perform outpatient peritoneal dialysis and recommends supportive care only.

            Dr. Watson, however, thinks it is mandatory to start dialysis and plan a transplant for baby Lynn, whose disabilities are confined to her urinary system. She strongly believes that baby Lynn could develop to live a reasonably normal life in which she could become educated, employed, and married, if her kidney problem can be managed.

            Ms. Gonzalez loves her baby and does not want Lynn to die, but she has a very low income and no family support. She is incapable of providing the necessary outpatient care for her baby without substantial assistance. She is the only decision-maker for Lynn’s care.

Chloe Erikson

Chloe Erikson is a 22-year-old woman who has been struggling with anorexia since the age of 16. After losing both of her parents in a car accident at that age, Chloe began to suffer from depression and an eating disorder. Although she has been receiving psychological treatment for almost six years, she has not been able to lead a normal life. Despite the fact that eating disorder treatment programs isolated Chole from every day life, they did not succeed in treating her mental illness; each time she is released from treatment, her weight drops precipitously and she must be re-committed within a few months. Chloe hates being in treatment, but she can’t control her disease sufficiently to stay healthy and independent. When she is not in an in-patient eating disorder treatment facility, she lives with her sister Heather Moriarty and Heather’s husband, John, who love Chloe and are fortunately able to support her financially.

            Following release from her last in-patient stay, Chloe decided she wanted to obtain an advance directive and healthcare proxy stating that the next time her weight dropped to a dangerous level, she did not want to be sent to a hospital ICU by ambulance if she collapsed. Although when her weight reaches a life-threatening low, Chloe is vulnerable to collapse and fatal heart attack caused by electrolyte imbalance, she has decided that dying as a result of such an episode would be preferable to her than returning to in-patient treatment. It’s not that Chloe has become suicidal—if there were a way for her to maintain a healthy weight without being committed she would do so, but her disease is uncontrollable, and in her view, returning to in-patient therapy that never seems to work is no longer and acceptable option.

            Chloe’s requires has greatly upset her care team and her family. Her sister is adamant that she not be allowed to obtain the directive she wants and won’t agree to Chloe’s wishes as her healthcare proxy because she can’t bear the idea of her sister dying at such a young age and in such a tragic and preventable way. Chloe’s internist, Dr. Shankar, is also opposed to the directive, because he feels that 22 is too early for a person to give up on life, and that anorexia is a mental disease that renders Chloe incompetent to make such an important medical decision for herself. However Chloe’s psychiatrist, Dr. Snyder, insists that despite her disease, Chloe is sufficiently competent to make her own treatment choices.

Richard Mertek

Richard Mertek is an 88-year-old retired physician who has been hospitalized for the second time in three months with Lewy Body Dementia. In spite of the dementia, he is still able to carry on a conversation and answer questions about current events and perform simple math calculations. He is ambulatory with a walker and is able to dress and feed himself, but he has become incontinent. In addition to suffering from loss of cognitive capacity and motor control, this form of dementia is affecting Richard’s emotional stability. Unfortunately, Lewy Body dementia also causes paradoxical reactions to antipsychotic medications, so that sedative medications that could ordinarily treat his psychological symptoms would instead cause agitation and hallucinations. Richard’s unmanageable behavior has been problematic, to the point where he tried to choke a nurse under the delusion that his medication was poisoned.

            At this point, Richard is medically ready for hospital discharge, and psychiatric medications have been optimized. However, Richard’s doctors are family are struggling to plan his discharge. Because of his history of belligerent conduct, Richard has been rejected by more than 20 assisted living facilities and nursing homes. His elderly wife suffers from emphysema and may be developing dementia herself, and has refused the necessary healthcare aids that she and her husband would need to remain in their own home. None of Richard’s children are prepared to take their father into their own homes. Doctors are reluctant to release Richard to his home.

BB

BB was a thirty-seven-year-old woman, in good health, employed and pursuing martial separation. Without warning, she suffered a brain stem stroke in November, resulting in the diagnosis of locked-in syndrome. She was left fully alert mentally, although quadriplegic and unable to speak; she preserved limited voluntary head movement, vertical gaze, blinking, and minimal voluntary movement of her left arm. Before her stroke, BB had a history of major depression with psychotic features, with on previous psychiatric hospitalization ten years earlier. Over the past decade, her symptoms were well controlled with weekly psychotherapy and medications. She was an effective and skilled professional in a competitive technical field. Ten weeks after her injury, BB was transferred to a rehabilitation facility for possible weaning from a ventilator and assistance with communication and mobility. Here she learned to communication with a computer system and received a modified power wheelchair. After some difficulty, she succeeded in breathing without the ventilator. However, her success disappointed her, to the surprise of the staff. It was then that the medical team learned of BB’s wish to die.  BB told a psychotherapist that she was suffering, which was primarily psychological rather than physical. She did not believe that this could ever accept life with her extreme physical limitations. BB’s medical team encouraged her to reconsider, saying many who suffer catastrophic injury have suicidal ideas year only, but after a year or two often regain their desire to live.  BB initially promised to postpone the discussion for 6 months, but after three weeks she changed her mind and said she wanted to die by stopping all nutrition, hydration, and medications, except for morphine to control her pain. BB manifested significant fluctuations of mood since admission, but a psychologist noted that she did not appear to have depression or a formal thought disorder.

            BB’s attending physician felt he could not continue to act as her doctor if she wanted to terminate food and fluid. The physician described to BB his idea of the suffering she would endure as she died of starvation and dehydration. He would not offer her pain medication, for to do so, in his opinion, would hasten her death, in violation of his ethical and personal beliefs. The physician believed BB’s request was more akin to assisted suicide. BB is not a candidate for local hospices as her imminent death is her own choice. BB’s disability makes the option of dying at home and impossibility, as she would need significant assistance to manage pain, possible seizures and routine care.

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