Bioethics I ~ the cases plus current (2018) medical information

The Terri Schiavo case:

Theresa Marie Schindler was born on December 3, 1963, to prosperous and devoutly Catholic parents, Robert and Mary Schindler, in a Philadelphia suburb, Huntingdon Valley. Robert Schindler was a dealer in industrial supplies. Mary Schindler was a full-time wife and mother. She went to a Catholic grade school and a Catholic high school, where the single activity listed in her yearbook entry was “Library Aide,” an extracurricular effort on which she and a friend had settled for the express purpose of having something besides their names in the yearbook. The college application process, in the sense of the crucial competition that it was for many in her generation, an exercise in the marshaling and burnishing of deployable accomplishments, seems not to have entered the picture.

She enrolled in the two-year program at Bucks County Community College, where, in a psychology class during her second semester, she met Michael Schiavo. He was from Levittown. He is said to have been the first person she had ever kissed. At the time they married two years later, in 1984, she was just under twenty-one; he was eight months older. After a honeymoon at Disney World, they moved in with her parents in Huntingdon Valley, then, when the Schindlers decided two years later to move to Florida, preceded them there. They lived in a condominium with the Schindlers in St. Petersburg. Theresa Schindler Schiavo clerked at the Prudential Insurance Company. She dyed her hair blonde. She lay out by the pool and drank several quarts of iced tea a day. She had been overweight in college, lost 60 lb. and continued to lose weight. Her husband later said she had an eating disorder. She reached 121 lbs of weight, having begun to miss periods due to undereating.

On the evening of February 24 or the early morning of February 25, 1990, is unclear but important. Michael Schiavo has said that his wife was already in bed when he came home that evening from the restaurant where he was then working. He went to bed. He woke at five AM, earlier than usual, to hear his wife falling on the floor in the hallway. “For some strange reason that day, I was just taking the covers off, and then she hit the floor,” he told the St. Petersburg Times-Floridian nine months after the fact. He called 911. It has been established that Theresa Schiavo was, at the time the emergency crew arrived, in full cardiac arrest. After seven attempts to defibrillate, or electrically shock the heart into beating normally, a rhythm was restored.

The cardiac arrest caused a severe lack of oxygen and brain damage since her brain did not receive oxygen for about five minutes. Doctors said that the collapse had been caused by a potassium imbalance, probably caused by her eating disorder.

During 1990 both husband and parents believed that, through physical therapy and treatment she could recover. After several nursing homes, the husband and parents bring her back home, but overwhelmed with the G-tube emergencies and coughing fits, they take Terri back to a nursing home in September. In March, 1991, a bone scan shows prior traumatic injuries to multiple ribs (on both sides), both sacroiliac joints, both knees, both ankles, several thoracic vertebrae, and her right thigh. In addition, the scan shows a minor compression fracture of her L1 vertebra. The trauma is consistent with her cardiac arrest, fall, CPR attempts, and eventual resuscitation. It was ordered because she appeared to show signs of pain during a physical therapy session.

Dr. Victor Gambone, Terri Schiavo's primary care physician, concludes that she is in an irreversible persistent vegetative state (PVS): a generally unresponsive state. That means that she has normal sleep-wake cycles but does not think, speak or respond to commands and is not aware of their surroundings. Noncognitive functions such as breathing and circulation may remain relatively intact. Terri Schiavo breathes on her own and blinks. Terri receives nourishment and hydration through a tube that placed the nutrients directly in her stomach.

During 1992, the Schindlers and Michael Schiavo stop living together, and Mr. Schiavo begins dating Jodi Anne Centonze with whom he eventually moves in and has two children (2002 and 2004). Michael cannot marry her since the Catholic Church does not allow for divorce.

In 1994 the Schindlers begin to challenge Michael Schiavo's guardianship of Terri Schiavo and attempt to remove him as legal guardian. This battle will last for the next 10 years.

In 1998, Michael Schiavo files a petition to discontinue feeding tube for Terri Schiavo. Terri's parents fight the petition. Dr. Jeffrey Karp neurologically evaluates Terri and indicates that she "is in a chronic vegetative state" exhibiting "an absence of voluntary activity or cognitive behavior...inability to communicate or interact purposefully with her environment." Karp also notes that "her chance of any improvement to a functional level is essentially zero."

Later tests will show that Terri's cerebral cortex has been completely destroyed; that her upper brain is 80% destroyed, and there is much damage to the lower brain. A CAT scan shows severe cerebral atrophy and an EEG shows no measurable brain activity.

The Schiavo case is especially difficult on two grounds: the patient's intent and her medical status. Mrs Schiavo did not make a “living will”—ie, a statement of what she would like to happen if she were subsequently to fall desperately ill but be unable to make her own decisions.

What would you do?

The end of the story:

https://www.nbcnews.com/health/health-news/bioethicist-tk-n333536

The Jahi McMath case

Before having her tonsils removed, Jahi McMath, a thirteen-year-old African-American girl from Oakland, California, asked her doctor, Frederick Rosen, about his credentials. “How many times have you done this surgery?” Hundreds of times, Rosen said. “Did you get enough sleep last night?” He’d slept fine, he responded. Jahi’s mother, Nailah Winkfield, encouraged Jahi to keep asking questions. “It’s your body,” she said. “Feel free to ask that man whatever you want.”

Jahi had begged not to get the surgery, but her mother promised that it would give her a better life. Jahi had sleep apnea, which left her increasingly fatigued and unable to focus at school. She snored so loudly that she was too embarrassed to go to slumber parties. Nailah had brought up four children on her own, and Jahi, her second, was her most cautious. When she saw news on television about wars in other countries, she would quietly ask, “Is it going to come here?” Her classmates made fun of her for being “chunky,” and she absorbed the insults without protest. A few times, Nailah went to the school and asked the teachers to control the other students.

The operation, at Oakland’s Children’s Hospital, took four hours. When Jahi awoke, at around 7 p.m. on December 9, 2013, the nurses gave her a grape Popsicle to soothe her throat. About an hour later, Jahi began spitting up blood. She eventually lost blood enough that she went into cardiac arrest. She was put on life support and declared brain dead on December 12, and issued a death certificate. Her family disagreed with the declaration and the certificate.

This launched a months-long battle between the hospital, which sought to remove Jahi from a ventilator after doctors and a judge concluded she was brain-dead, and her relatives, who fought in court to keep her on the ventilator and contended she showed signs of life. The issue wound up in Alameda Superior Court.

In court documents and public comments, the hospital maintained that there's no doubt that McMath is brain-dead, describing the condition as irreversible.

"No amount of prayer, no amount of hope, no amount of any type of medical procedure will bring her back," Children's Hospital Oakland spokesman Sam Singer said last month. "The medical situation here in this case is that Jahi McMath died several weeks ago."

A judge on December 23 appointed Dr. Paul Fisher, chief of pediatric neurology at Stanford Children's Hospital, to evaluate Jahi.

Fisher concluded the next day that she met the criteria for brain death. According to a court filing, Fisher found that the girl's pupils were fully dilated and unresponsive to light and that she did not respond to a variety of intense stimuli.

His report also says Jahi showed no sign of breathing on her own when a ventilator was removed: "Patient failed apnea test." The report says her heart was beating only because of the mechanical ventilator.

Jahi's family members maintain that they're hoping for a miracle. Her mother told CNN that she'd seen improvements, including indications from a hospital monitor that she said suggest her daughter was trying to breathe on her own. The family is debating moving Jahi to a new facility in a different state. Jahi has not been fed for the past three weeks, and her organs are failing.

What would you do?

The end of the story: https://edition.cnn.com/2018/06/29/health/jahi-mcmath-brain-dead-teen-death/index.html

More details of Jahi's case can be found in https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die - written in Feb. 2018

Interview with Dr. Trevor Resnick, chief of neurology at Miami Children’s Hospital

What’s the difference between brain dead and a vegetative state?

While a brain-dead person shows no sign of electrical activity in the brain, a person suffering from extreme brain damage can often exhibit some normal bodily functions, doctors say. The body essentially goes into autopilot: It can sweat when it’s hot, digest food and control its own heartbeat.

“A vegetative state means the person is so brain-damaged that they have no higher cognitive awareness of what’s going on around them,” Resnick said. “But they still have some brain stimulation.”

A brain-dead person, however, can’t even maintain normal blood pressure or body temperature, and would require medications and life-support technology to keep them breathing.

In one of the most famous right-to-life struggles, Terri Schiavo of Florida was diagnosed as being in a “persistent vegetative state” following brain damage from a heart attack in 1990. While she couldn’t communicate, she still had a functioning brain stem. She was kept alive until her feeding tube was disconnected in 2005.

How long does the body of a brain-dead person sustain itself?

There isn’t significant research showing how long a brain-dead person can keep functioning with the help of technology because such cases are rare.

"It's going to be different depending on the age and health of the person," said Dr. Art Caplan, head of the Division of Medical Ethics at NYU Langone Medical Center. “We don’t have much documentation of this because people who are corpses don’t wind up being put on machines."

Resnick added that a brain-dead body is more prone to lung infections and other health risks.

Can their body still process food?

Yes, but poorly, Caplan said. While a feeding tube is needed to get food into the body, those nutrients aren’t being properly processed.

"You need a lot of energy to function," Caplan added. “Your heart could eventually stop for a lack of energy.”

A moment to talk about costs...

What is the cost of keeping someone brain dead alive?

With medical care, doctors and equipment required, it doesn’t come cheap.Some estimates put it around $7,500 per day in a hospital. In Jahi's case, at home, it cost around US$150,000 a week according to Jahi's mother in an interview to the New Yorker.

And would insurance cover it?

Not in most states, because, legally, the person is considered dead. However, in NJ (and NY) it is different. Both NY and NJ where families can reject the concept of brain death if it violates their religious beliefs. According to New Jersey’s 1991 statute on death, insurance providers can’t deny coverage because of “personal religious beliefs regarding the application of neurological criteria for declaring death.”