Gina

An ultrasound performed on Gina who was 23 weeks pregnant revealed multiple findings suspicious for trisomy 21 syndrome, (Down syndrome). Gina and her husband were devastated, saying they could not possibly raise a child with mental retardation and physical anomalies, and they requested a termination. The obstetrician recommended amniocentesis for chromosomal analysis that would give definitive diagnosis of trisomy 21, and the test was performed. The parents said they planned to terminate the pregnancy if the results of the chromosome analysis confirmed Down syndrome.

Before the results were returned, Gina arrived at the labor and delivery unit with a tender abdomen, purulent discharge from the cervix, and high fever. She appeared to have an acute intrauterine infection from the amniocentesis procedure. Antibiotics were started, but it soon became clear that the woman was becoming septic; the obstetrician on call recommended rapid delivery of the fetus. 

Gina and her husband again clearly stated that they wanted no resuscitation performed on the infant after delivery. The couple and the physicians agreed that, given the probability of a severely anomalous infant, the plan would be to provide only comfort care measures.

Gina’s labor was induced and she delivered a liveborn female infant, surprisingly robust. The infant had a strong cry, kicked vigorously, and was much larger than anticipated. The neonatologists examining the infant found themselves reconsidering their decision to withhold resuscitation. Suddenly the seemingly certain prenatal diagnosis of Down syndrome appeared implausible, given the appearance of a strong infant without apparent anomalies. The NICU team realized that, under any other circumstance, resuscitation measures would be well under way; they became uneasy as they watched the premature infant's forceful kicking and energetic cries. Within minutes to hours the female infant's lungs would tire and she would die without respiratory support.

The physicians announced to the parents their decision to reverse their previous plan to withhold care based on the healthy appearance of the neonate. The neonatologist described the resuscitation measures they planned to begin. The parents were infuriated. "We had an agreement," the father retorted. "My wife and I made it very clear to you that we cannot manage an impaired child. This is our decision to make—we're the parents, and it is your duty to respect our wishes."

*http://virtualmentor.ama-assn.org/2008/10/ccas1-0810.html

Neil

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Neil was first diagnosed with acute lymphoblastic leukemia at age 3. After induction chemotherapy failed to produce a remission, his family spent the next 6 months traveling around the country trying to find the best doctors and latest chemotherapy options. When they finally decided to seek treatment for Neil at a major children’s hospital hundreds of miles from their rural home, Neil and his mother moved to this city, where he spent the next 3-1/2 years in and out of eventually successful chemotherapy and a bone marrow transplant.

Years later, Neil revealed that most of his early memories involved the staff or patients of the children’s hospital. He certainly remembered good experiences, like the ceremonial head-shaving parties, the local ballet company’s recitals in the hospital, and his close friendships with other patients. But the reality was that Neil had lost many of those friends during his hospital stay, and he had many painful memories, too—the endless nights of nausea and pain, his mother’s constant anxiety about his recovery, and the unexpectedly difficult transition back to “civilian living,” catching up in school and learning to share belongings and his parents’ time with his siblings.

Neil succeeded in putting those painful memories behind him and living the life of an average kid in a small town. He’d developed an enthusiasm for football in long conversations with a football-loving nurse, and he threw himself into playing. However, when he was 14 years old, he began to notice increasing fatigue during practice and games. He didn’t mention it to his mother. During his annual physical, it was noted that he had lost 15 pounds and, when questioned, he revealed his other symptoms. His mother, inconsolable, prepared for another trip to Children’s Hospital.

There, Andrea, a third-year medical student, was assigned to Neil’s case. She, too, shared Neil’s enthusiasm for football, and they developed a rapport. But when Neil began asking Andrea about his diagnosis, she didn’t know how to respond.

Neil’s ALL had, in fact, returned. Because he had relapsed after transplant, only participation in a Phase I trial designed to measure toxicity and maximum dosages of new chemotherapy agents was offered as an option. But his mother had specifically asked the treatment team not to discuss Neil’s diagnosis with him, believing that he couldn’t cope with the news or appreciate its implications.

Meanwhile, Neil confided in Andrea that he would rather die than endure another course of chemotherapy, saying, “It was horrible. I can’t do it again. I just want to go home, but I’m scared my mom and doctors will hate me.”

*http://virtualmentor.ama-assn.org/2010/07/ccas1-1007.html

Jessica

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Jessica is a 2 ½ year old girl who was evaluated at 7 months of age for failure to thrive and enlargement of her liver and spleen.  She was found to have Gaucher’s disease, a genetic (recessive) lipid storage disease, the manifestations of which are due to the absence of an enzyme.  She was seen in consultation at a Pediatric Research Center.  It was not known which of three types of this disease she has.  She was begun 19 months ago on a 6-month trial of a replacement enzyme, which is approved for and effective in preventing the manifestations of the disease in two of the three types of Gaucher’s disease.  The family was unable to return to the Research Center for the 6-month follow-up visit.  The treatment has been continued, and, at her parents’ urging, her dosage has been increased to higher than normal.  She has had frequent long hospital admissions (infections and seizures) and she has developed problems suggestive of progressive disease (including respiratory failure; she has been on a ventilator at home for several months) strongly suggesting to her physicians that she has the more severe type of this disease that does not benefit from enzyme replacement. 

On the other hand, her liver and spleen have decreased in size, she has survived longer than the average for patients with the more severe type (typically, death before age two), her parents point out that she has grown some, and they are convinced that she shows signs of neurologic development while at home.  However, during her frequent hospitalizations, she has shown minimal awareness; at best she smiles, responds to her parents, and follows simple commands.  She is currently at home and receives total parental nutrition, home mechanical ventilation, a morphine drip (for bone pain) and the intravenous enzyme every 14 days.

Jessica’s overall therapy is somewhat expensive, but her parents are easily able to afford it.  Both Dr. Burgess, Jessica’s primary pediatrician, and the research consultant believe the enzyme is no longer medically indicated.  In addition, Dr. Burgess is concerned that progressive disease and invasive treatments are causing her sufficient suffering that continued treatment might be inappropriate if it is merely postponing her inevitable death.

Jessica’s parents are her caregivers at home, and they have declined assistance from home nursing.  They have no other children.  Her mother no longer works outside the home so is able to be home full time, and her father has reduced his work as an accountant to part time in order to help.   Friends from their church are supportive and help the family in many ways.  You are the physician on the case, what do you do?

Lisa

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Lisa is a 63-year-old retired neurologist who has suffered for 7 years from cancer which has now metastasized throughout her skeleton.  Although she tried and benefitted temporarily from various treatment including chemotherapy and radiation, she is now in the terminal phase of her disease. Lisa’s doctor has referred to hospice care.  Only patients with a life expectancy of less than six months are eligible for such care.

            Lisa has been almost completely bedridden and experiences constant pain, which becomes especially sharp and severe when she moves.  The only medical treatment available to her at this time is medication, which cannot fully alleviate her pain.  In addition, she suffers from swollen legs, bedsores, poor appetite, nausea and vomiting, impaired vision, incontinence of bowel and general weakness. 

            Lisa is mentally competent and wishes to hasten her death by taking prescribed drugs. Lisa has made three separate requests for the drugs to end her life and for the medical team to provide her and her family with counseling, emotional support and any necessary ancillary assistance at the time she takes the drugs.

*Adapted from http://www.rbs2.com/pas.pdf

Mr. Silver

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Mr. Silver is a 39-year-old man with prostate cancer.  Although the disease is confined to his prostate, Dr. Binder knows that, in a patient this young, the cancer is virulent and should be treated aggressively.  For this reason, he strongly recommends that MR. Silver undergo a radical prostatectomy. Mr. Silver has heard about the potential side effects of the surgery including impotence and incontinence, and he insists that he prefers radiation.

            Dr. Bender has explained that the chances of a long-term cure are 30-40 percent better with the prostatectomy and that any resulting problems can be surgically corrected later.  Mr. Silver is adamant, however, saying “Unless you can tell me that the odds are overwhelming that I will not be impotent or incontinent, I’ll take my chances with radiation.”  His wife has told Dr. Binder privately, “I don’t care about the side effects and he’ll get used to whatever happens.  I just want him alive.  We could have many good years ahead of us if he has the surgery.  I’m confused about his decision; it seems so unlike him to take this kind of risk. I’m not sure he totally understands the repercussions of what he is saying.”  Dr. Bender is very uncomfortable with proceeding with radiation.  Dr. Bender wants to respect his patient’s autonomy, but wonders if Mr. Silver is being irrational.

*Post, Blustein, Dubler. (2007). Handbook for Health Care Ethics Committees. Baltimore: Johns Hopkins University Press. 

Mrs. K

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Mrs. K, a chronically debilitated and bedbound 86-year-old woman, was admitted to the hospital with an acute change of mental status. At baseline, the patient was alert and oriented but required assistance with all activities of daily living except feeding herself.. The patient had declined surgery for both the aortic stenosis and the hip fracture.

The patient, widowed in the 1970s, has one adult child, John, and lives by herself.  For 18 months prior to this hospitalization Mrs. K had paid for an around-the-clock caregiver, but in recent months the caregiver's hours had been reduced to 6 hours a day (9AM to 3PM) because of financial limitations. During the evening and overnight, Mrs A was by herself. To pay for caregivers, the patient had taken a reverse mortgage on her home, sold most of her belongings, and used credit cards to their limits.

Her son, who is 57 years old, is her designated health care agent and the only family member involved in her care. He visits periodically to check on Mrs. K, but these visits and his ability to provide assistance are limited by frequent travel and work obligations (he is a semi driver).

About 8 months prior to admission, a meeting was convened to share concerns with the patient about her safety. Participants included a social worker from Adult Protective Services (APS), her son, her EHCP physician (also her primary care physician), and an occupational therapist. The APS social worker was involved in this case for 2 years and had tried, along with Mrs. K's son, to arrange for her to move into an assisted-living facility (to be financed through a Medicaid waiver), but Mrs. K declined. Occupational therapists had worked with the patient for more than a month to see if she could become more independent, hoping to improve the safety of her home situation, but she remained chiefly bedbound. The patient was told by the assembled multidisciplinary team of professionals that her current arrangement was unsafe and that it placed her at higher risk of developing various medical problems and eventually clinically deteriorating. According to her EHCP physician, the patient clearly understood what was at stake: her Mini-Mental State Examination score was 28 of a possible 30, and, more importantly, she had the capacity to understand the risks. The patient's response to being confronted by the professionals was telling them, “You'll have to drag me kicking and screaming out of the house if you want to put me into a nursing home.” The EHCP physician and her son confirmed that this position was consistent with the patient's previously and repeatedly expressed views on the topic.

In the emergency department, she presented wearing a hospital gown, was oriented only to person, and was considered delirious. She was unkempt, had extensive dental decay and a small stage 2 ulcer on her buttock, and was lying in stool and urine. She was given intravenous antibiotics and rehydration. By hospital day 2, she was markedly improved, her mental status was considered to be back to baseline, and discharge planning was initiated. The physical and occupational therapy team recommended a short-term, subacute rehabilitation placement.

Mrs. K is not interested in rehabilitation and wants to go directly home as soon as possible; going home and staying at home is her foremost priority. Given their insights on the patient's home situation, members of the health care team, including social workers, physical and occupational therapists, physicians, and nurses, are concerned about her safety if she were to go home in her current state. She was told that she would likely become sicker, develop worsening bedsores, and have poorer hygiene. She was told that her chances of quickly returning to the hospital or even of dying at home alone were high. In addition, she was informed that her ability to secure in-home caregiver services would end when her money ran out. Although these concerns were shared with the patient, she remains adamant about going home, stating that she is aware of the potential risks and that she is not going to go anywhere else. The medical team thought she had the capacity to make this decision but, given the gravity of the situation, consulted the psychiatry department for a second opinion. After two evaluations, the psychiatric consultant concluded that the patient is competent, but she noted:  “the patient may not fully realize the extent to which her health has deteriorated and her increased need for care. There is uncertainty about how thoroughly the patient has thought through the ramifications of going home. During the evaluation interview, the patient seemed either unwilling or unable to engage in a careful (and adequate) conversation about the risks associated with her proposed course of action.” The psychiatric consultant indicated that the patient's depression was adequately treated.

Mrs. K’s strongly expressed desire to go directly home and not to a rehab facility appears consistent with her long-standing expressed wishes.  Communication with her son revealed that Mrs. K’s attitude toward “nursing homes” stemmed from a time in her life when she volunteered with a seniors’ facility. In doing this, she visited several nursing homes and developed an unfavorable view of them, insisting she never wanted to go to one. Accordingly, her son explained, past efforts to have her consider assisted-living options were always unsuccessful.

*http://www.hopkinsbayview.org/medicine/residency/files/grandrounds/Carrese_RefusalOfCare.pdf

Dr. Lammers

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Dr. Lammers

            Dr. Damien is the personal physician and friend to another physician Dr. Lammers.  Lately, Dr. Lammers has seemed withdrawn, irritable, and distracted.  Dr. Damien has heard rumors that Dr. Lammers recently made an error in calculating a medication dosage, but a pharmacist caught the error before the drug was dispensed.  Dr. Lammers has resisted talking to anyone about the incident.  As Dr. Lammers’ physician, Dr. Damien knows that Dr. Lammers once had an addiction to cocaine in medical school.  Dr. Damien has a strong suspicion that Dr. Lammers may be relapsing, but Dr. Lammers will neither confirm nor deny Dr. Damien’s assumption when asked.  Dr. Damien offers to help Dr. Lammers enter into a treatment program, but Dr. Lammers says he is “handling things by himself” and is now avoiding Dr. Damien. 

Dr. Damien has no proof of his suspicions and Dr. Lammers has not made any medical errors since the incident with the medication error.  Rumors are circulating about Dr. Lammers’ performance, as he has been particularly irritable with the staff around him.  Dr. Lammers wants to intervene, but is unsure how to proceed.  Dr. Lammers is not sure that he is justified in bringing forward a charge Dr. Lammers being an impaired physician, as he has no convincing evidence that Dr. Lammers is currently on drugs. 

*Written by Devan Stahl

Ms. L

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Ms. L is a 28-year-old woman admitted to General Hospital to deliver her first child.  In the past she has been treated for pyro-mania and schizophrenia (paranoid type), and since the age of 18 she has spend a total of 5 and a half years in a state mental hospital. She has also been arrested for arson on three occasions.  Each arrest led to a court referral for psychiatric care.

            Mrs. D, the social worker on the Ob-Gyn service at General Hospital, is familiar with Ms. L’s psychiatric history and arrest record because she was formerly employed by the community mental health center where Ms. L had been a patient.  During a pre-delivery conversation with Ms. L about her plans, Mrs. D discovers that Ms. L. has no current residence and spent the previous year drifting from shelter to shelter.  Ms. L. informs Mrs. D that after her baby’s birth she is planning to move in temporarily with a local Rabbi and his family, who occasionally share their home with people in dire straits.

            Mrs. D immediately begins to wonder about warning the Rabbi about the danger to him, his wife, and young children.  As a member of Rabbi P.’s congregation, Mrs. D is aware that, on occasion, he opens his home to transients.  She is very concerned about the welfare of Rabbi P’s family, given Ms. L’s documented history of arson.  The next day, Mrs. D asks Ms. L. for permission to talk with Rabbi P. about her housing needs and about the difficulties she has experienced over the years.  Ms. L refused permission for such disclosures.

*

-->Crigger, Bette-Jane. Cases in Bioethics : Selections from the Hastings Center Report. 3rd ed. New York: St. Martin's Press, 1998.

Mr. V

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Mr. V is a 23-year-old orthodox Jewish man. Mr. V was admitted to the intensive care unit following a bicycle accident. Three days after the accident, the consulting neurologist declared Mr. V to be brain dead based on current medical standards, thus meeting the state’s legal definition of death. When the consulting neurologist shared the brain death diagnosis with Mr. V’s family and their rabbi, the rabbi responded, ‘‘Our sect of Judaism does not believe in the diagnosis of brain death. We believe that there is only one way to determine death: when your heart and breathing stop.’’ The family also responded, ‘‘We believe that our son is alive. We want to take him home.’’ Dr. R, the patient’s attending physician, is also an orthodox Jew. Dr. R is in full support of Mr. V’s family taking him home; however, before discharge, Mr. V will require a feeding tube and tracheostomy to continue mechanical ventilation.

Several days have passed while Dr. R seeks a surgeon to perform these procedures. Numerous surgeons refused to participate because of the brain death diagnosis and the associated belief that it is unlawful to perform surgery on a dead person. You are asked by Dr. R to perform the surgery, how do you respond?

*DeWolf, Bosek, Marcia, Sue. "Refusal of Brain Death Diagnosis." JONA's Healthcare Law, Ethics, & Regulation. July/September, 2007 vol.9 no 3. p87

Mrs. F

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Mrs. F is a 65-year-old woman with recurring medical problems as a result of many years of anorexia.  Mrs. F has mild dementia and she is having an increasingly difficult time taking care of herself.  One day she falls down the stairs in her home and breaks her hip.  When she is brought into the emergency room, it is clear that Mrs. F is malnourished, as her body resembles that of a much older woman.  Mrs. F refuses to eat, without any explanation.  Shortly into her ICU stay, Mrs. F has a stroke and she is quickly ventilated and given a PEG tube. Mrs. F has two daughters who come to see her at the hospital.  Mrs. F’s oldest daughter says that Mrs. F hated hospitals and doctors because she had once been institutionalized many years ago for her anorexia.  She asks doctors to stop all treatment and let her mother die in peace.  Mrs. F’s other daughter, however, claims that Mrs. F never wanted to eat and her earlier refusal is a symptom of her anorexia and not her wish to die.   Mrs. F has no advanced directives and the medical care needs to decide whether or not to remove Mrs. F’s feeding tube.

*Written by Devan Stahl

Mrs. Z

           Mrs. Z, a young, pregnant woman with no children underwent an ultrasound examination. Her baby girl was overdue and he ultrasound revealed that she was anecephalic. There appeared to be no brain tissues present except for portions of the brain stem. The parents were told of this tragic diagnosis and immediately decided to volunteer the baby as an organ donor. The obstetrician in charge of Mrs. Z’s care decided to contact a large, tertiary care facility nearby in order to ascertain their interest in utilizing the child as a donor.

            Two-thirds of children who suffer from anecephaly are stillborn. Many of the organ systems in such children are underdeveloped, but it is possible to utilize both the heart and kidneys for transplantation to other children. The OB and the pediatrician agreed that it would soon be necessary to induce labor. However, if organ procurement was to be undertaken, it seemed reasonable to transfer her to the large tertiary care hospital to induce labor there.

            The rest of the medical staff was uncertain to proceed. If they accepted the mother’s wish to have the baby be an organ donor, were they under an obligation to try to resuscitate the infant if it was stillborn? What steps should they take to try and support the child considering that babies born with this condition normally receive no aggressive treatment in the neonatal nursery? Perhaps most confusing was the question of when death should and could be pronounced.

            Should Mrs. Z be transferred to the large medical center? Should the physicians accept the wishes of Mr. and Mrs. Z to have their child serve as an organ donor? If they do, what steps would be morally permissible to help increase the chances of allowing the child to serve as an organ donor?

*

--> -->Crigger, Bette-Jane. Cases in Bioethics : Selections from the Hastings Center Report. 3rd ed. New York: St. Martin's Press, 1998.

Stephen

Stephen is 28 years old. He is becoming more and more concerned about his increasing muscle weakness. He shares his anxieties privately with his GP who refers him to the hospital for further tests. These confirm that Stephen is suffering from Myotonic Dystrophy. This means that over the years his muscles will weaken and he may have other physical and mental symptoms. However, his consultant assures him that at least for the time being, this condition should not affect his life too much. Myotonic Dystrophy is a disease that is inherited. This means that one of Stephen's parents must carry the defective gene that is causing the disease. It could mean that many other members of the wider family could be affected. Even if their own condition is mild, they could pass it on to their children in a very severe and even fatal form.  Stephen’s physician advises that he tell his family about their risk of MD, but Stephen claims that this information is private and he does not want to tell his family.  Stephen and his wife are also planning to have children, but Stephen is afraid that his wife, who has always dreamed of having children, will leave him if she finds out about the disease. Stephen’s physician is unsure if he has the right to tell Stephen’s family and wife about his condition.

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*http://prs.heacademy.ac.uk/view.html/prsdocuments/52

 

John

John, a 32 year-old lawyer, had worried for several years about developing Huntington's chorea, a neurological disorder that appears in a person's 30s or 40s, bringing rapid uncontrollable twitching and contractions and progressive, irreversible dementia. It leads to death in about 10 years.

John's mother died from this disease. Huntington's is autosomal dominant and afflicts 50% of an affected parent's offspring. John had indicated to many people that he would prefer to die rather than to live and die as his mother had. He was anxious, drank heavily, and had intermittent depression, for which he saw a psychiatrist. Nevertheless, he was a productive lawyer.

John first noticed facial twitching 3 months ago, and 2 neurologists independently confirmed a diagnosis of Huntington's. He explained his situation to his psychiatrist and requested help committing suicide. When the psychiatrist refused, John reassured him that he did not plan to attempt suicide any time soon. But when he went home, he ingested all his antidepressant medicine after pinning a note to his shirt to explain his actions and to refuse any medical assistance that might be offered. His wife, who did not yet know about his diagnosis, found him unconscious and rushed him to the emergency room without removing the note. What should the care team at the emergency room do?

*

-->http://depts.washington.edu/bioethx/tools/cecase.html

Janet M.

            Janet M., in her early twenties, is pregnant for the third time.  She has been an insulin-dependent diabetic since the age of 12 but has experienced no major complications of diabetes.

            Dr. Lambert has repeatedly advised her of the risks that uncontrolled diabetes poses to her fetus.  Congenital malformations are two to four times more common in infants of mothers whose diabetes is poorly controlled. Furthermore, uncontrolled diabetes can result in the birth of a premature, stillborn fetus. 

            Dr. Lambert admits her at 15 weeks gestation as an inpatient to treat her diabetes, but she discharges herself against his advice five days later before her diabetes has been satisfactorily controlled.  Once home, she ignores pleas from Dr. Lambert and other physicians to obtain chemstirps or a dextrometer for monitoring blood sugar.  In response, she tells them she ‘has no money’ or ‘forgot.’

            At 21 weeks gestation she is hospitalized for a threatened miscarriage but quickly announces her intention to leave.  Dr. L. decides that her behavior poses a clear risk to the well being of her fetus.  Unless she changes her mind, he says, he will seek a court order to keep her hospitalized. Is his response justified?

*

-->Crigger, Bette-Jane. Cases in Bioethics : Selections from the Hastings Center Report. 3rd ed. New York: St. Martin's Press, 1998.

Yusef

A 9-year-old boy named Yusef Camp who lives in inner-city Washington ate a pickle that he had bought from a street vendor.  Soon after, he went into convulsions and collapsed on the sidewalk.  A rescue squad took him to the nearest emergency room where his stomach was pumped.  Tests revealed that the pickle contained traces of marijuana and PCP.  The boy suffered severe respiratory depression and was left unconscious, unable to breathe for an unknown period.

            The emergency room personnel restored respiration by putting him on a ventilator, but they were unable to restore him to consciousness or get him breathing adequately on his own.  The physicians concluded that his brain function was irreversibly destroyed and that there was no possibility of recovery.  They might have simply pronounced him dead and then stopped the ventilator, but the situation soon became more complicated.  Two of the attending neurologists were convinced that the patient’s brain was totally dead, but one believed that he had minor brain function still in place. So they were incapable of pronouncing the patient dead based on loss of brain function. Now the question became, what should they do? Their patient was still living but permanently unconscious, breathing only because he was on the ventilator. The physicians pointed out that there was nothing more they could do except keep the ventilator running, perhaps indefinitely and maintain the body in a persistent or permanent vegetative state.  The parents are Muslims, members of the Nation of Islam, who firmly believed in the power Allah.  They believe that Allah would intervene if it was his will, and that it was the physicians’ job to give Allah the opportunity.

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*http://floiakoatbp.blogspot.com/2009/03/bioethics-note.html 

Sara

Sara, a 22 year-old woman has been re-admitted for treatment of active tuberculosis. She emigrated with her family from Somalia approximately 18 months ago.

Three months ago, she came to the hospital because she was coughing up blood.  Work-up revealed pulmonary tuberculosis without evidence of spread outside the lungs.  The organism was not resistant to standard therapy.  She was not critically ill, had not lost weight, and was Human Immunodeficiency Virus negative.  Active disease in family members was excluded.  Her prognosis for cure was good.  In addition, her inpatient and outpatient treatment was to be provided without charge by a religious hospital that exercised a prominent mission to the indigent community.

Therapy was begun, but she frequently refused medication and occasionally said she wanted to die.  Her nurses suspected that she induced vomiting after taking her medication.  She refused treatment by injection.  Because of concern about compliance and contagion, the Health Department recommended inpatient, monitored anti-tuberculosis therapy for 6 weeks rather than discharge for outpatient treatment.

Multiple management conferences were held with translation services.  Her parents and siblings were included, as well as a Muslim cleric, but support could not be engendered for the prescribed treatment goals. The Somalis perceive tuberculosis as a death sentence and could not be convinced otherwise in spite of hearing repeatedly that in contrast to the dire prognosis of tuberculosis in Somalia, the treatment here would have a high likelihood of success.  She and her family were consistently resistant to the necessity of inpatient treatment and subsequent outpatient follow up.

She was diagnosed as depressed, but she also refused treatment for depression. Psychiatric, Palliative Care, Health Department, and Ethics committee consults were obtained. All the consultants were consistent in their exhortations for her to comply with therapy. She again refused injections and began to pull out intravenous lines. She completed the 6 week course, such as it was, had improvement in her symptoms and chest x- ray findings. She was sent home, presumably cured.   She did not return for scheduled ambulatory visits.

She is re-admitted now, three months later, with fever and intermittent mental confusion.   She has been found to have recurrent pulmonary disease plus tuberculosis inside her skull, both meningitis and a cerebellar abscess.  It was surmised by the Infectious Disease Consultant that there were substantial medication gaps in her hospital regimen during the last admission.  When lucid, she again refuses or expectorates her medications and pulls out her intravenous lines.  Her family supports her decision to refuse medication.  The attending physician has asked the ethics consultant to address the question: “Is it ethically permissible to accept this patient’s refusal of potentially life-saving treatment?"

*

-->http://cbhd.org/content/permissibility-accept-refusal-potentially-life-saving-treatment

Charlie

            Dr. Stevens was nearing the end of a 30-hour shift in the emergency room when he walked into Charlie’s room. Before even conducting a physical examine, Dr. Stevens immediately recognized this as a case of malnutrition. He knew that after his examination, he would have to contact Child Protective Services.

            Charlie was a five-year-old African American boy. He sat listlessly on the bed surrounded by his parents and grandmother. Dr. Stevens first noted the child’s size: he was dramatically smaller than an average 5 year old. His hair was thin and dull, his skin appeared dry and pallid, especially in comparison to his parents rich, dark tones. Upon examination, the child was indeed drastically underweight: he was in the 3^rd percentile for age (26 lbs) and in the 3^rd percentile for linear growth (24”). His abdomen was distended, he suffered from diarrhea, his nails were thin and ridged, and his hair was brittle and falling out. Charlie did not have a pediatrician and had not received routine care. Dr. Stevens also noted that Charlie was irritable and was not responding socially as would a typical child his age. Physically and socially, Charlie seemed more like a 2 or 3 year old. 

            Dr. Stevens then turned to the child’s parents to confirm what he had already diagnosed. The mother adjusted the La Leche League tote on her shoulder as she glanced nervously from the nurse, to the doctor, to her son.  The parents were both tall and thin, though healthy looking. They had immigrated to the US from Ghana about 10 years ago and retained much of their cultural garb. Not surprising to Dr. Stevens, they also spoke little English. One glance from the nurse confirmed what he had already suspected – noncompliance and defiance! He sighed, realizing that his shift would be even longer than anticipated.

            A brief discussion with the parents revealed that Charlie was exclusively breast-fed. That was enough for Dr. Stevens. Clearly the problem was that Charlie was not getting the nutrients he needed because his parents were not feeding him. A 5 year-old child cannot survive on only breast milk! Dr. Stevens quickly demanded that Charlie’s parents cease breastfeeding immediately, “...or we’ll have to involve the authorities!”

            Dr. Kidley, a pediatric clinical psychologist, was brought in for a consultation before Child Protective Services were called. Walking into the room, she could feel the tension. She had been forewarned that this was a case of malnutrition and that the parents were noncompliant, and she was expecting something quite different from what she encountered. Both the parents and the grandparents, though weary of the medical staff, were clearly greatly concerned over the health of their son. They appeared loving and distraught – not the behavior of parents who were starving their child. Dr. Kidley suspected something deeper was going on here and suggested an ethics consultation.

*Written by Heidi Pieroni

Blake

 "I get that my cancer's back," said Blake, obviously frustrated and eager to leave Dr. Conrad's office. "So what's the plan? How tough is it going to be?" Dr. Conrad answered, "Well, it is a fairly aggressive treatment. I can't deny that. But you're 16 now and pretty strong. The side effects are different for everyone; they can range anywhere from mild to harsh. This therapy has worked for a lot of patients and I believe it can work for you. What do you think?"

Just then Blake's cell phone rang. "I'm stepping out for a second," he said to Dr. Conrad. "It's one of my best friends."

"Sure, go ahead." Dr. Conrad said and turned to Blake's parents for some corroboration. They had been over this ground before when Blake's initial chemo treatments had put his acute lymphoblastic leukemia into remission, giving him several years of normal life.

"I've been talking to him about the importance of starting treatment again," said Blake's father. "Maybe I didn't do a good enough job explaining the urgency of it. He says he wants to know what to expect before deciding."

Blake's mother also weighed in, "I think he should be the one to make this decision. He asked directly, what does this treatment entail? He doesn't like it when we hold out on him. He wants to know the truth—and he deserves to be given all of the information straight."

"This time treatment will consist of not only high doses of chemo but radiation, too. But I don't want to lay all that on him right now," said Dr. Conrad. "All I want is for him just to agree to begin the new round of treatments."


*http://virtualmentor.ama-assn.org/2008/08/pdf/ccas3-0808.pdf

Josh

Dr. Carpenter had taken care of 3-year-old Josh since he was born. One afternoon, Dr. Carpenter received a call from Josh’s parents, both of whom were successful professionals. Josh’s dad had just been diagnosed with Huntington’s disease, a degenerative, neurological disorder, and the parents wanted Josh to be tested for the disease. The genetic polymorphism for Huntington’s is autosomal dominant, so Josh had a 50-50 chance of inheriting the gene from his father, and, if he did, he would develop the disease if he lived to middle age.ment is available.

After offering her condolences to Josh’s parents, Dr. Carpenter expressed what she considered to be a consensus opinion on the matter: “At present, there is no prevention, treatment, or lifestyle change that has an effect on expression of the gene. For these reasons, pediatric and genetic medicine specialty societies advise against testing children. Josh will have plenty of time to decide whether he wants to be tested once he is an adult.”

“I disagree completely,” said Josh’s mom. “If Josh grows up knowing he has this condition, he will be much better prepared to deal with it as an adult. He’ll be forming his identity over the next 18 years. Assuming he has the disease, he won’t face the trauma of having his identity and life plan change all at once.”

“But you’ll be denying him the chance to make the decision as an adult,” replied Dr. Carpenter. “Maybe he will decide not to know.”

“Isn’t that what parents do?” said Josh’s dad. “They make decisions for their children. If we take your approach, Josh may be 25 when he discovers that he wishes he knew all along whether or not he has Huntington’s. But he won’t have that option because of our decision not to test him. The choice to do nothing is still a choice, Dr. Carpenter.”

*http://virtualmentor.ama-assn.org/2009/09/pdf/ccas2-0909.pdf

Dayton

Dr. Pittman was nearing the end of her shift at a busy community clinic on a Friday afternoon. Her last appointment was with a new patient, Dayton, a 6-year-old boy who, according to his parents, had an earache. Dr. Pittman quickly diagnosed otitis media and talked with Dayton’s parents about treatment.

            Dayton’s behavior troubled Dr. Pittman far more than his inflamed eardrum. He did not make eye contact or respond to her questions. He flinched whenever she approached him, cried out in fear when she peered in his ear with an otoscope, and hopped up and down, shaking his hands compulsively, several times during the visit. When Dr. Pittman questioned Dayton’s parents about his behavior, they told her he had been diagnosed with autism at age 4. His development, they said, was delayed.

            She asked what treatment Dayton’s parents had sought for him, and the answer shocked her. They were members of the autism self-advocacy movement and believed that Dayton’s condition was simply an example of neurodiversity and was not pathologic. They clearly adored their son, doting on him during the clinic visit and telling Dr. Pittman how they home-schooled him after the public school system failed to meet his social and educational needs. They accepted Dayton as he was and were determined to provide him with lifetime care.

            Dr. Pittman viewed Dayton’s situation differently. She knew that with proper therapy and medication his condition could improve considerably—but only if treatment were begun as soon as possible. She worked at a nearby autism clinic, where Dayton could probably qualify for long-term treatment. When she mentioned this to Dayton’s parents, they wanted nothing to do with it. They were adamant in their belief that Dayton’s condition required no medical intervention. Dr. Pittman had encountered many adult patients with culture-based opinions about their health problems that she found hard to understand, but this was the first time she’d disagreed so fundamentally with parents about a situation that she believed would harm their child by limiting his future opportunities. She fought the urge to reprimand them for what she considered their neglect of his debilitating developmental problem. Did their treatment constitute child endangerment, she wondered? Would she be justified in contacting a child protection agency?



*http://virtualmentor.ama-assn.org/2010/11/pdf/ccas1-1011.pdf

Kelly Patterson

Dr. Thomas Daley was happy to see Kelly Patterson.  He had been following her budding acting career through the local community newspaper.  A 17-year-old high school senior, she would be graduating in a few months and heading off to the state university to major in theatre.  He recalls the shy, reclusive girl she was before her rhinoplasty some years ago.  Although Kelly’s mother was initially leery of a nose job for her then 11-year-old daughter, she and Kelly were desperate to put an end to the merciless teasing by other children about her nose.  According to Mrs. Patterson, plastic surgery on Kelly’s nose dramatically improved her self-confidence.  “She just became a different person, so much more outgoing,” her mother said, “it made such a big difference in her social life.”

     Kelly and her mother entered Dr. Daley’s office and made small talk for a minute or so.  Dr. Daley then asked Kelly about her reason for the appointment.  Kelly looked at her mother and then said that she had been doing research on the internet about breast augmentation surgery and would like to undergo the procedure. Dr. Daley first assured Kelly that she was perfect the way she was.  He then expressed some reservations about performing the procedure and sent the Pattersons away with some informational booklets that detail risks and side-effects of breast augmentation surgery. 

     Later that month, Dr. Daley found himself at the conference on plastic surgery, talking informally to another plastic surgeon, Dr. Sarah Carlson.  He recounted to Dr. Carlson his discussion with Kelly and Mrs. Patterson, and then added that, although he does not doubt that she is sharp enough to understand the factual complexities about the breast augmentation procedure, he still, nonetheless, felt morally uncomfortable with Kelly’s request.   Dr. Carlson confessed that in southern California, where she practiced, it was not uncommon for girls Kelly’s age to undergo breast augmentation surgery.  “Besides Tom,” she said, “if you’re ethically uncomfortable with performing the surgery, you can just tell her that you won’t do it, that she’ll have to find someone else.”  Dr. Daly nodded and pointed out that where he practices, most plastics surgeons refuse to do breast augmentations on adolescents.

     A few weeks later, Dr. Daley met with Kelly and her mom.  They discussed the procedure in detail.  Kelly’s remarks and questions reflected a thorough understanding of the risks and side-effects of the procedure. You are Dr. Daley. Do you decide to do a breast augmentation of Kelly or do you refuse?

*Written by Jeffrey P. Bishop 

Jason Garrett

Jason Garrett is brought in to see Dr. Heaney, a local pediatric endocrinologist. In reviewing the patient’s chart, Dr. Heaney notes that the patient is followed by Dr. Sanchez. Dr. Heaney knows that Dr. Sanchez is a very good pediatrician and reviews Dr. Sanchez’s notes.

Jason Garret is a 13 yo boy who has been seen since birth by Dr. Sanchez. It was noted that over the last 7 or so years, the parents had brought Jason in to see Dr. Sanchez on numerous occasions. At first the visits were scheduled due to behavioral issues in school. Over time, the parents wanted him tested because his grades began to fall. In time, Jason underwent neuropsychiatric testing and it was noted that he met criteria for a diagnosis for ADHD. Jason was placed on Ritalin and the parents seem to think that his behavior in school improved, as did his grades.

Dr. Sanchez also notes that Jason has always been small for his age. Since birth and at virtually every well-child check-up Jason was in the lowest percentile for height. He loves sports and especially basketball. The parents have brought Jason to see Dr. Sanchez for every month for three months, and at each visit they ask Dr. Sanchez to begin Human Growth Hormone for Jason. Dr. Sanchez runs a Growth Hormone level and Jason's Growth Hormone Level and other hormonal panels are normal.  He notes that given Jason’s growth pattern that he is likely going to be 5’4” tall.

Dr. Heaney goes in to see Jason and his parents. They are there for a consult for his shortness. The parents have done their research and note that shorter people are often picked on in school and they are sure this is the source of many of Jason’s problems at school. They note that Jason gets in a lot of fights because the other kids pick on him for his size. They also note that if Jason could be more successful in sports that he will have more confidence and be more successful in his academic work. They also note that on average, for every inch in height that a man is over 5’8” tall, he makes about $600 per year per inch more. After an interview, physical exam, and review of the chart, Dr. Heaney diagnoses Jason with Idiopathic Short Stature Syndrome.

Dr. Heaney knows that at most Human Growth Hormone can gain Jason between 0.75 and 3 inches in height.

Should Dr. Heaney give Jason the hormone?

Mrs. Randall

Pauline Randall, a 65-year-old married woman with three adult children, has been suffering from amyotrophic lateral sclerosis (ALS) for several years.  Her neurological condition has deteriorated so that she can no longer control any voluntary muscles.  Confined to a bed in a nursing home in a small Midwestern American city and breathing with the aid of a respirator, she communicates through the electronic monitor that responds to eyelid blinks.  She can ‘write’ words and brief sentences in this way.

            Mrs. Randall understands that her condition cannot be treated and that it will inevitably lead to her death.  But she has been an active participant in her health care and has been determined to continue functioning as long as possible.

            Her physician, Dr. Samuels, believes that she is not receiving adequate nutrition and that the time has come to insert a nasogastric feeding tube.  When he proposes this procedure to her, she blinks quickly, ‘No more!’ He asks, ‘Do you understand you will die slowly of starvation if we do not insert this feeding tube?” “Yes,” she blinks, “No more.”

            When Mrs. Randall’s family, which has been close and supportive through her illness, learns of her opposition, they have divided opinions.  Her husband believes that her wishes should be respected, but two of their three children are convinced that her life should be prolonged.  The nursing staff believes that she should not be made to suffer any longer.

            There is no question that Mrs. Randall is legally competent, that is, that she understands the procedure being proposed and the consequences of refusal.  Should her refusal of the feeding tube be honored, even though it will lead to her death?

* http://ethics.iit.edu/EEL/Right%20to%20Die.pdf

R.L.

At 80, R.L. lives with his wife in a retirement community. He has always valued his independence, but recently he has been having trouble caring for himself. He is having difficulty walking and managing his medications for diabetes, heart disease, and kidney problems. His doctor diagnoses depression after noting that R.L. has lost interest in the things he used to enjoy. Lethargic and sleepless, R.L. has difficulty maintaining his weight and talks about killing himself with a loaded handgun. He agrees to try medication for the mood disorder. Two weeks later, before the effect of the medicine can be seen, R.L. is hospitalized for a heart attack. The heart is damaged so severely it can't pump enough blood to keep the kidneys working. Renal dialysis is necessary to keep R.L. alive, at least until it's clear whether the heart and kidneys will recover. This involves moving him three times a week to the dialysis unit, where needles are inserted into a large artery and a vein to connect him to a machine for three to four hours.

After the second treatment, R.L. demands that dialysis be stopped and asks to be allowed to die.

You are R.L.'s physician. What should you do?

Malcom

            Malcolm ("Mac"), age 64, is an architect who was found to have an incurable cancer of the esophagus 5 months ago. He came to the Emergency Department 35 days ago with shortness of breath and it was found that his tumor was compressing the large airways going into both lungs. He was emergently intubated, admitted to the ICU, and given ventilatory support which has now continued for more than a month. Vigorous treatment has failed to shrink the tumor, and the ICU physician and oncologist are both convinced that his condition cannot be improved. Efforts have been made to awaken him to discuss limitation of treatment, but he remains too confused to understand or to engage in meaningful conversation. Because of his unawareness and his very poor prognosis, his professional caregivers have said they believe continued ICU care is futile.

            His only son, Paul, and wife, Lindsey, have been very attentive and willing to consent to any therapy that has been suggested so far. When presented a few days ago with information about his terminal condition and imminent death, however, they were unwilling to consider or even discuss any limitation of treatment, insisting that he remain in the ICU, on ventilator support, on a “full code” status. They stated that their deep religious faith (Methodist) required them to do everything possible to preserve life, and they were counting on God to perform a miracle. They report that the patient was also a man of deep faith who would likewise insist on this approach.

Mac’s ICU nurse reports that he remains unresponsive and does not appear to be uncomfortable. She further reports overhearing a conversation between Paul and Lindsey about the need to get the patient’s signature on a document that would finalize a real estate venture that he and his son have developed. An attorney came to the ICU to obtain the patient’s signature a few days ago, but Mac was unable to understand or to sign the document.


*http://cbhd.org/content/continuing-futile-icu-support-relatives-insistence

Patient Ed

Dr. Goldstein looked with concern at the small man lying in the ICU bed. The nursing home had brought him to the hospital because of lung congestion. Dr. Goldstein glanced back at his notes: Ed, age 67, a white male with diabetes, high blood pressure, and poor vision. Somewhat mentally retarded. Dr. Goldstein knew from past experience that Ed functioned at about a 10-year-old level and tended to think very literally. Oh yes, and a hearing problem, thought Dr. Goldstein, seeing Ed’s hearing aid gleam under the room light. “Ed,” Dr. Goldstein said loudly. “Ed, you have no control over your esophagus. When you swallow, food and water are going into your lungs, which is making you sick. You have developed pneumonia from the infection. We can treat the pneumonia, but we need to put you on a ventilator and a feeding tube. We’d sedate you so that it wasn’t uncomfortable.”

Ed stared up at Dr. Goldstein, blinking several times. His right eye drifted off to look into the corner of the room, but his other eye was focused on Dr. Goldstein.

“Do I get an operation?” Ed asked. “OK, but I don’t want tubes, and please don’t cut off my big toe.”

Dr. Goldstein sighed. Ed was running a fever and his oxygen levels were low in his blood. It was hard to talk to Ed in the best of times, so Dr. Goldstein wasn’t completely sure that Ed had understood him now. He tried again, shouting more loudly. “Ed! You have pneumonia. We need to treat it. You are very sick. We need to put in a ventilator and a feeding tube. Once the pneumonia is cured, we may be able to remove the tubes.”

Ed shook his head, eyes rolling. “Go away! No tubes! No tubes!” Dr. Goldstein looked at Ed’s file. Seven years ago, Ed had checked himself into the local nursing home. When he entered the nursing home, and again three years ago, a patient advocate had helped him fill out an Advance Directive which stated Ed’s medical wishes. Ed had clearly indicated that he did not want a ventilator, a feeding tube, or drastic cardiopulmonary measures such as CPR.

Dr. Goldstein wanted to put Ed on a ventilator, but it was fairly clear Ed didn’t want one. However, without the feeding tube and ventilator Ed would certainly die, probably in a week or two. Dr. Goldstein checked again. Ed had also filled out a Durable Power of Attorney, in which he stated he wanted his younger brother Bert to make medical decisions for him in the event he was no longer able to do so for himself.

Dr. Goldstein got up and left the room. He was convinced that it was time to call Bert. It wasn’t clear to Dr. Goldstein that Ed really understood what was happening to him, and Dr. Goldstein had always felt that it was courteous to involve the entire family when possible. Dr. Goldstein called Bert and explained the entire situation.

Bert is a rather shy, 63-year-old man. Living quietly at home, Bert has Crohn’s Disease and some arterial damage, including fairly major blockages in the arteries feeding his kidneys. Bert has never married, and he doesn’t like to make decisions. Bert sat down, still holding the telephone, and sighed. Poor Ed! What should he do?

After a long pause he mumbled, “Can I think about it and let you know tomorrow?”

“No,” said Dr. Goldstein firmly. “Bert, Ed’s not doing well. He has bad pneumonia, but he may be able to get better if we give him treatment and put him on a ventilator for a while. As you know, Ed’s against being on a ventilator, but I don’t think he understands that this may only be temporary. I don’t think his infection is letting him think clearly on his own. As his representative, you can decide to put him on a ventilator, but you need to understand the risks and benefits.”

Bert hesitated. “Um. What are the risks?”

Dr. Goldstein was more comfortable answering this question. “Bert, he has pneumonia, complicated by an esophageal defect. If we don’t treat him aggressively, he will almost certainly die, probably in a few days. There is a risk that we may not be able to remove the ventilator and feeding tube after the pneumonia is treated. It depends on the condition of his esophagus.”

Bert squirmed. “OK,” he sighed. “How about if you put him on the ventilator tonight, and if I change my mind tomorrow, then you can remove it?”

“Absolutely not,” Dr. Goldstein roared. “That would be murder!”

Finally Bert agreed to drive into the hospital, see Ed, and make a decision. After he hung up, Bert decided to call his nephew Eric. Eric might know what to do.

Eric was not at home. Bert left a message: “Eric, this is Uncle Bert. Ed is in the hospital. He has pneumonia and they say he needs tubes put in. But I know he doesn’t want them. Well, I just thought you might want to know. Sorry you weren’t home.”

Later that evening, Eric played the phone message. He immediately called Bert, but Bert was gone. Eric drove to the hospital to find out what was happening. He didn’t find Bert, but he was directed to the ICU unit, where he met Dr. Goldstein. Eric shook hands with Dr. Goldstein. “I’m Eric,” he said. “I’m Ed’s nephew. Ed’s older sister is my mother. I know there are patient privacy laws you can’t break, but I’d appreciate any information you can give me. If there is anything I can do to tell my mother or help my uncles, I’d like to know about it.

Dr. Goldstein was relieved Eric had shown up. Eric seemed to be someone he could talk to who would understand the situation and help Bert realize that Ed should get treatment.

*

--> http://sciencecases.lib.buffalo.edu/cs/files/treating_ed.pdf