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About the Author
Michael Williams, MD, FAAN
Medical Director, The Sandra and Malcolm Berman Brain & Spine Institute
Director, Adult Hydrocephalus Center, Sinai Hospital of BaltimoreCo-Director, Center for Gait and Mobility, Sinai Hospital of Baltimore
Table of Contents
Section I The Approach
1 Approaches to Ethical Problem Solving Tyler Reimschisel Michael A. Williams 1
Section II Professionalism
2 Medical Student Relationships with Patients, Peers, and Teachers Lois Margaret Nora 17
Case Third-year medical students and their faculty advisor discuss their experiences in the areas of ethics, professionalism, interpersonal behaviors, and communication in the clinical-care and clinical-teaching setting.
3 Truth Telling and Deception Ann E. Mills Patricia H. Werhane 36
Case 1 A neurologist must decide whether to tell a patient and his family about her suspected diagnosis of ALS before confirmatory test results are received.
Case 2 A neurologist must decide whether to tell an established patient with Alzheimer disease and her family about a clinical trial being conducted at a nearby institution to investigate a new vaccine for the disorder. The vaccine may have a significant risk, and in any event, the neurologist doubts that it will benefit the patient. The patient and family are desperate for a cure.
Case 3 A patient asks his neurologist to falsify his diagnosis as "brain tumor" so that the insurance company will pay for an MRI that the patient wants but the neurologist believes is not necessary.
4 Confidentiality Don W. King Michael A. Williams 46
Case 1 An elderly patient with complex partial seizures is still driving, despite having 2 seizures within the last 3 months. The patient asks the neurologist to keep all information about his condition strictly confidential.
Case 2 A neurologist's nurse believes that it would be a HIPAA violation to send a patient's records, without obtaining the patient's signed permission, to the office of a physician who is treating the patient.
Case 3 A neurologist is treating a local elected official who had a seizure at a public event that was covered by the media. A physician colleague who is not involved in the patient's care tells the neurologist that she accessed the patient's EMR and saw the results of the MRI scan.
5 Responding to Medical Errors Michael A. Williams 57
Case 1 A patient with epilepsy is mistakenly given 10 times the dose of IV Iorazepam than she should have received. The neurologist does not want to disclose the error to the patient and her husband.
Case 2 A neurologist has a near-miss medical error upon learning from a patient referred for a lumbar puncture that she had a baclofen pump in place that was not disclosed in the records received from the referring physician.
Case 3 A patient's neurologic condition significantly worsens after a third-year neurosurgery resident allows a first-year neurology resident, while they are on call and unsupervised, to insert an intraventricular catheter in the ICU. Because they had looked at the wrong CT scan, the IVC was inserted on the wrong side. The neurosurgeon wants to hide the error, and the neurologist wants to disclose it to the ICU attending physician.
6 Gifts from Industry Jacqueline J. Glover Steven P. Ringel Mark Yarborough 72
Case 1 The manufacturer's sales representative for a new antiepileptic medication (a) provides lunch at a weekly epilepsy conference, (b) invites the neurologist to speak at an all-expense-paid, industry-sponsored meeting, and (c) later asks the medical director of the EMU why the medication is not on the hospital formulary and why the neurologist's partners are not prescribing the medication.
Case 2 A neurologist has both a business relationship and a social relationship with the sales representative for a manufacturer of epilepsy-monitoring equipment. During a business meeting to discuss the purchase of equipment, the sales representative offers to take the neurologist to the NCAA Final Four.
7 Gifts from Patients Tyler Reimschisel 85
Case 1 A 6-year-old gives his neurologist a hand-drawn picture.
Case 2 The mother of the child in Case 1, who is a prominent local artist, gives the neurologist a large painting that she created.
Case 3 An elderly patient gives her epileptologist homemade cookies and then explains that she is planning to add the physician as a beneficiary in her will.
Case 4 A patient who often gives his neurologist bottles of wine to show his appreciation also frequently reschedules visits and becomes more demanding.
8 Termination of the Physician-Patient Relationship Jill Conway 96
Case 1 A patient repeatedly fails to appear for scheduled appointments.
Case 2 A practice decides to no longer see patients who have public health insurance and gives patients 3 months' warning to that effect. One of the patients says she cannot find another physician.
Case 3 A divorced 60-year-old man appears to be scheduling frequent appointments more for social contact than for medical need and has been asking personal questions of the neurologist and staff.
Case 4 A 40-year-old patient who is consistently angry, rude, and belligerent with physician and staff is escorted from the office by a security guard.
9 The Impaired Physician William Brannon 108
Case 1 A 72-year-old practicing general surgeon is sent to a neurologist after making an intraoperative error. The neurologist suspects dementia, but the patient refuses further testing.
Case 2 A 36-year-old neurologist becomes addicted to hydrocodone and alcohol and is referred to the hospital's committee for impaired physicians.
10 Sexual Misconduct by Physicians Thomas Pellegrino 122
Case 1 An unmarried female patient invites a divorced neurologist to her home for dinner. The neurologist is uncomfortable with the invitation but does not want to insult the patient by refusing her invitation.
Case 2 A neurologist has sexual intercourse with a patient's wife in the office suite after hours and then begins a regular sexual relationship with her.
Case 3 A widowed female neurologist begins a sexual relationship with Mr. Robertson. The neurologist had treated Mr. Robertson's wife, who died 3 years ago.
Case 4 A senior partner in a neurology practice is overheard telling his patient she has "very sexy" underwear.
Case 5 A gay male neurologist is attracted to a male medical assistant who is employed by the practice.
Section III Informed Consent
11 Informed Consent and Refusal Thomas Cochrane 135
Case 1 An otherwise healthy dentist presents within 1 hour of stroke symptom onset and refuses IV tPA.
Case 2 The wife of a Jehovah's Witness with an acute traumatic brain injury says that her husband would steadfastly refuse transfusions, even if he would die as a result.
Case 3 A patient with drug-induced hemolytic anemia is at risk of dying but refuses blood transfusion because of concerns about "contamination."
Case 4 A 32-year-old woman who has suffered traumatic quadriplegia but no traumatic brain injury from a fall is intubated and sedated because of ventilatory failure. Her family refuses spinal stabilization surgery and requests that life-sustaining treatment be withdrawn without waking the patient.
Case 5 The principal investigator of a clinical trial of an investigational ALS drug that has a low risk of lethal allergic reaction contemplates withholding information about the risk from a patient who has previously refused treatments in which severe allergic reactions were a remote possibility. Recruitment in the clinical trial is behind schedule.
12 Assent and Refusal by Children and Adolescents Patricia Evans 147
Case 1 The parents of a 14-year-old girl with a brainstem glioma request that physicians not discuss her diagnosis or treatment with her. She privately tells the physician and nurse that she knows that something is wrong and she wants to know what is happening.
Case 2 A 16-year-old boy with Tourette syndrome wants to stop his medication, but his family insists that he must stay on it.
Case 3 A 17-year-old with intractable epilepsy who lives with her parents and is herself the mother of a 4-month-old refuses epilepsy surgery.
Section IV Cognitive Impairment
13 Intellectual Disability Michael Shevell 157
Case 1 When a 12-year-old boy with Fragile X syndrome is hit by a car, his parents refuse surgery to evacuate an epidural hematoma and insert an ICP monitor.
Case 2 The parents of a 35-year-old woman with Down syndrome who is on peritoneal dialysis because of chronic renal failure are told by the nephrologist that their daughter is not eligible for kidney transplantation because of her intellectual disability.
Case 3 A neurologist asks the parents of a 7-year-old boy with spastic tetraplegic cerebral palsy who has refractory partial seizures to enroll him in a clinical trial of an investigational anticonvulsant. Both the physician and the parents will receive financial compensation if he is enrolled in the trial.
14 Dementia Michael A. Williams 167
Case 1 A gastroenterology team obtains consent for a liver biopsy from a hospital inpatient with documented frontotemporal dementia and performs the biopsy without the knowledge of the patient's wife.
Case 2 A patient with moderate dementia and idiopathic normal-pressure hydrocephalus who unequivocally improves after a trial of CSF drainage refuses shunt surgery, owing to her anosognosia. Her physician and family agree that shunt surgery would be in her best interests.
Case 3 A 90-year-old nursing home resident with end-stage dementia and with no family, guardian, or advance directive is intubated for pneumonia in the ED, admitted to the ICU, and extubated the next morning. The chief resident writes a DNR order, stating that treatment is futile. A medical student says that hospital policy requires an ethics consultation before the DNR order can be written.
15 Principled Approach to Neurologically Impaired Drivers Matthew Rizzo Katherine G. Shearer 178
Case 1 A 70-year-old widow who has been arrested twice for dangerous driving is diagnosed with frontotemporal dementia. She keeps trying to drive even though she has been told not to.
Case 2 A 45-year-old man has mild residual motor dysfunction and cognitive impairment following surgery and radiation therapy for a frontal glioblastoma. He passes a formal driving evaluation, but the neurologist still recommends that he should not drive.
16 Requests for Enhanced Function in Healthy Individuals William P. Cheshire 190
Case 1 A post-graduate student with multiple sclerosis who is writing her doctoral dissertation asks for a prescription for donepezil, citing 2 clinical trials that demonstrate improved cognition in multiple sclerosis.
Case 2 Part A. At 20, a premed student requests a prescription for something to help him study so that he can keep up with classmates who are using pharmaceutical stimulants as "study aids." Part B. Ten years later, the same patient, now a practicing physician at a high-volume practice, seeks a prescription for modafinil to sustain his alertness and concentration. He also asks for prescriptions for anxiety, insomnia, and headaches.
Case 3 Part A. A 16-year-old high school student with ADHD improves with methylphenidate. Her father, a physician, wants her dosage increased to aid her performance in gymnastics. Part B. Ten years later, the same patient, now a financial analyst, requests a prescription for a "brain-boosting pill" to help improve her performance and exceed her productivity targets.
Section V Issues In Death And Dying
17 Neonate with a Severe Neurologic Disorder Russell D. Snyder 203
Case A 3-day-old infant, born at 24 weeks' gestation weighing 590 grams, is in the NICU with a germinal matrix hemorrhage, hydrocephalus, a severely impaired neurologic exam, myoclonic jerks, burst-suppression on EEG, respiratory failure, circulatory shock, and renal failure. The healthcare team recommends no further escalation of therapy and provision of comfort care. The baby's parents refuse, stating, "We believe in miracles."
18 Advance Directives Jerome E. Kurent 215
Case A 53-year-old man with ALS wants to ensure that his wishes for his end-of-life care will be honored by his wife, whom he believes would insist on having him intubated and placed on a ventilator when he loses the ability to breathe.
19 Withholding and Withdrawing Life-Sustaining Treatment in Patients with Decision-Making Capacity Eran Klein 225
Case 1 A morbidly obese woman with multiple medical problems agrees to limited radiation treatment of the spine for palliation of pain related to leptomeningeal carcinomatosis, but she refuses chemotherapy. Although sedated from large doses of narcotics needed for pain relief, she says that she understands that she is forgoing treatment that might extend her life.
Case 2 A 49-year-old physician with Guillain-Barré syndrome agrees to treatment with IVIG and intubation but states that if his symptoms progress after a full course of treatment, he wishes to be extubated and allowed to die.
Case 3 A woman with locked-in syndrome who previously said that she wanted to be treated aggressively changes her mind.
20 Withholding and Withdrawing Life-Sustaining Treatment in Patients Without Decision-Making Capacity Michael A. Williams 237
Case 1 The parents of a 22-year-old woman who has suffered severe traumatic brain injury and moderate hypoxic cerebral injury disagree about her treatment. CT shows bilateral frontal lobe contusions and traumatic subarachnoid hemorrhage. She has been unconscious for 7 days.
Case 2 Based on the patient's prior statements, the family of a woman with bilateral infarctions of the frontal lobe and caudate head secondary to subarachnoid hemorrhage and vasospasm requests that all treatment be stopped. However, the patient is showing signs of emerging consciousness, and the ICU team questions whether the family's request is appropriate.
21 Persistent Vegetative State Dan Larriviere 248
Case The husband and the parents of a woman who has been in a persistent vegetative state for more than 10 years disagree on treatment for the patient. The parents have filed a motion for a court injunction.
22 End-of-life Care for the Neurologically Impaired Child Patricia Evans 261
Case 1 A neurologist must decide whether to discuss resuscitation status and palliative care issues with the parents of a 2-year-old who has severe cerebral palsy, intractable epilepsy, and worsening neurologic function.
Case 2 A 15-year-old adolescent with type 2 spinal muscular atrophy who has been on noninvasive continuous ventilation for 5 years and has recently had several bouts of pneumonia wants to review his options with his neurologist.
23 Palliative Care Robert M. Taylor 271
Case 1 A frail 62-year-old man is in the ED with a large halamic hemorrhage with intraventricular extension. He has no advance directive, and his family thinks that he would not wants to live severely debilitated.
Case 2 A 75-year-old woman with untreatable colon cancer awakes from sleep 3 days after exploratory surgery with a stroke with right hemiparesis and partial expressive aphasia with retained comprehension. She has severe dysphagia, and a PEG is being considered.
Case 3 A 69-year-old man with advanced Parkinson disease is hospitalized with aspiration pneumonitis, delirium, and severe dysphagia. He has no advance directive and has never discussed treatment preferences with his wife, who feels that he would not want resuscitation or a PEG.
24 Physician-Assisted Suicide Michael P. McQuillen 282
Case 1 A 48-year-old woman with quadriparesis from multiple sclerosis is admitted for acute respiratory failure. She has just moved to the region from another state, and her prior records and scans have not yet arrived. She is intubated and admitted to the ICU on a ventilator. When she wakes up, she tells the neurologist, "Stop it! I don't want it!"
Case 2 A 32-year-old man with ALS for 7 years has dysphagia, poor sleep, and dyspnea when supine. He asks his neurologist for a prescription for enough sedation that he will go to sleep and never awaken.
25 Brain Death Jennifer Berkeley 292
Case 1 After two clinical exams and an apnea test, a patient is determined to be brain dead. However, after the patient's husband has been told that she is brain dead, the ICU team learns that a transcranial-Doppler exam-accidentally done after the second clinical exam-showed anterograde blood flow in the middle cerebral artery. The ICU attending states that the diagnosis of brain death must be withdrawn; the ICU residents, nursing staff, and transplant coordinator disagree.
Case 2 A neurologist at a hospital that requires 2 brain-death examinations refuses to come to the hospital at 7 pm on a Saturday to perform a second exam on a patient whose wife has initiated a request to donate the patient's organs. By the time the neurologist performs the examination the next day, many of the organs are no longer suitable for transplantation.
26 Organ Donation Michael A. Williams 305
Case A 40-year-old man has a severe hemorrhage in the pons and midbrain, with obstructive hydrocephalus treated by an intraventricular catheter. CT shows no evidence of hemispheric infarction or edema, and EEG shows diffuse 1-2 cps activity. Based on the patient's wishes, the family wants to donate as many organs as possible, and instead of donating under the protocol for organ donation after cardiac death, they ask that the IVC be removed so that brain death can be pronounced, with organ donation to follow. Members of the ICU team disagree as to the proper course of action.
Section VI Other Topics
27 Genetic Testing in Huntington Disease Allison W. Willis 313
Case 1 A woman whose father and sister had Huntington disease wants to be tested so that she can plan her life accordingly. Neurologic examination shows subtle signs of chorea.
Case 2 A woman with recently diagnosed Huntington disease has 35-year-old identical twin sons. One wants to be tested for the disorder as soon as possible, but the other does not want to know his status and insists his brother should not be tested.
Case 3 To determine whether she should begin her family, a 19-year-old newlywed whose paternal grandfather has been diagnosed with Huntington disease wants to be tested for the disorder. Her father, however, does not want to be tested.
28 Opiate Treatment of Chronic Nonmalignant Pain Peter Lars Jacobson 322
Case A neurologist refuses to treat a patient with clearly documented neurologic, neurosurgical, and orthopedic sources of chronic nonmalignant pain, citing concerns about scrutiny by the Drug Enforcement Administration; in actuality, he does not want to contend with another "drug-seeking patient."
29 The Clinical Investigator and Involvement in Clinical Research Amalia M. Issa 330
Case A medical school dean of admissions who has ALS asks a neurologist-who is on faculty at the school of medicine and who is the principal investigator of a randomized, placebo-controlled phase III clinical trial of a novel ALS drug-to guarantee the dean assignment to the active drug arm of the trial.
Relevant Documents for Practical Ethics in Clinical Neurology 342
Appendix A. American Academy of Neurology Code of Professional Conduct 343