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