2013 Marek Vácha. ''I worry that what we do with intensive care is increase suffering. The...

2013Marek Vácha

''I worry that what we do with intensive care is increase suffering. The rationale is that we don't know what is right, and if you don't know what's right, you have to share the decision making.“

Dr. Marilee Allen, assistant director of neonatology at the Johns Hopkins School of Medicine.

neonatal mortality = death before 28 days of age

postneonatla mortality = death between 28 days and 1 year

infant mortality rate = deaths per 1000 live births

Lantos, J.D., Meadow, W.L., (2006) Neonatal Bioethics. The Moral Challenges of Medical Innovations. The Johns Hopkins University Press, Baltimore. p. 14

USA, infant mortality: 1900: 55/1000; 2000: 9/1000

USA: neonatal mortality: 1960: 19/1000 1970: 16/1000 1980: 13/1000 1990: 9/1000 2000: 4/1000

Babies in NICUs

1. full-term or near-term babies with acute illness

2. babies with congenital anomalies

3. babies born prematurely otherwise normal

1. Full-term or near-term babies with acute illness

the least morally controversial

diagnoses must be made quickly and treatment initiated expeditiously

time or need for discussion is limited these babies geneally either get better

quickly or die quickly ethical problems arises only when treatment is

paartially successful

2. Babies with congenital anomalies

trisomy 21; spina bifida; multiple congenital malformations

Baby Doe the underlying syndromes cannot be sured treatment of the life-threatening

manifestations is generally feasible and successful

babies who are successfully treated will be left with significant impairments

if these life-threatening manifestations are not treated, the babies will die

3. Babies born prematurely

long-term prognostic uncertainty at the time whe treatment is initiated, the baby´s

prognosis is usually uncertain doctors cannot say what the outcome for any particular

baby will be first threshold (25+): if the prognosis is good enough,

parents are not permitted to refuse intervention second threshold (23 – 25 weeks): parents are given

the facts and are allowed to make a decision one way or the other

third threshold (before 23 weeks) survival i s unprecedented or treatment is futile starting point for decision making

NICUs: modern miracle or medical nemesis?

USA: roughly 250 000 preterm infants are born each year of these, about 75 000 weigh less than 1500

grams at birth. although most babies treated in NICUs do

well, many are left with a lifelong problems mild-to-severe chronic lung disease visual impairment seizures neurodevelopmental problems


NICUs: modern miracle or medical nemesis?

some parents do not want NICU treatment for their critically ill babies. they´d rather their baby die than be subjected

to the hazards of neonatal intensive care.

Baby Doe was born with Down syndrome and a congenital blockage of his oesophagus.

Baby Doe´s esophageal atresia, with a tracheoesophageal fistula, made it impossible for him to eat. With such a malformation, anything that he

swallowed would end up not in his stomach but in his lungs.

This is a condition for which surgical repair is routine and routinely succesful. Without a surgical repair of this congenital

anomaly, he ould die of either starvation or pneumonia.

the birth weight was 2 722g and the lenght 50,8 cm from crown to heel.

After consideration of all medical information the parents decided not to authorize surgery. The infant was given phenobarbital (5mg) and morphine (2,5mg) as needed for pain and restlessness. The parents visited and held the child frequently until his death six days later.

Legal Facts parents declined repair of the fistula parents felt that „a minimally acceptable

quality of life was never present for a child suffering from such a condition“ and further that it was not in the best interest of the infant, their other two children, and the family entity as a whole for the infant to be treated.

Legal Facts he court heard testimony form the mother´s

obstetrician that he and other members of the obstetrical group believed that the infant should remain at the hospital where he was born, knowing that surgery was not possible there and that the child would soon die.

the infant´s pediatrician, although agreeing with the obstetrician´s prognosis, recommended in testimony that the infant be immediately transferred to another hospital where corrective surgery could be performed.

Legal Facts the trial court determined that the

parents „have the right to choose a medically recommended course of treatment for their child in the present circumstances.“

Ronald Reagan himself asked aides to find a way to use federal law to prevent such cases from happening again.

„What more dramatic confirmation could we have of the real issue than the Baby Doe case in Bloomington, Indiana? The death of that tiny infant tore at the hearts of all Americans because the child was undeniably a live human being — one lying helpless before the eyes of the doctors and the eyes of the nation. The real issue for the courts was not whether Baby Doe was a human being. The real issue was whether to protect the life of a human being who had Down's Syndrome, who would probably be mentally handicapped, but who needed a routine surgical procedure to unblock his esophagus and allow him to eat.

A doctor testified to the presiding judge that, even with his physical problem corrected, Baby Doe would have a "non-existent" possibility for "a minimally adequate quality of life" — in other words, that retardation was the equivalent of a crime deserving the death penalty. The judge let Baby Doe starve and die, and the Indiana Supreme Court sanctioned his decision.“

The Justice Department proposed a controversial mechanism for intervening: they defined decisions like the one made for

Baby Doe as discrimination against children with disabilities, a violation of federal civil rights laws

Any organization that was found to be in violation of civil rights laws could lose all of its funding.▪ for hospitals, this potentionally meant that they

could lose their Medicar, Medicaid and NIH funding

Neonatologists had been arguing for years that newborns had a right to medical care equivalent to that of all other citizens The Baby Doe regulations enshrined that

right in federal law.But the regulation also represented an

unprecedented intrusion of the federal government into the doctor-patient relationship.

Ultimately, the U.S. Supreme court struck down the Baby Doe regulations Hospitals, court said, could be judged only

if they refused to provide treatment for which the parents did consent.

New amendments specified three criteria for situations in which it woud permissible for doctors and parents to withhold or withdraw life-sustaining therapy:

1. The infant is chronically and irreversibly comatose

2. The provision of such treatment would merely prolong dying, not be effective in ameliorating or correcting all of the infant´s life-threatening conditions, or otherwise be futile in terms of the survival of the infant.

3. The provisions of such treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane.

the baby Doe criteria permitted the withdrawal of „futile“ or „inhumane“ treatment, but they did not define „futility“ or „inhumanity“.

neonatologists were critized for inappropriately withholding treatments that parents might have wanted and of unjustly judging quality of life as unacceptable or intolerable.

Has the fetus right to life? right to prenatal care? right to be born of sound mind and body?

anencephalic infant born at Fairfax Hospital, Virginia

her mother insisted that everything be done, including CPR and mechanical ventilation› only God could take life

at first, the hospital complied with the mother´s wishes

after few months, the baby was transferred to a chronic care facility.› the hospital sought judicial validation of its claim

that continually resuscitating and ventilating this infant was futile, based on the prognosis

lack cerebral hemispheres, but may have varying degrees of brainstem present

most of them die in utero the vast majority are diagnosed in the

early stages of pregnancy most parents elect to terminate such

pregnancies because lack of the skull, the

anencephalic infant cannot be born by vaginal delivery, but by cesarean section

Paola, F.A., Walker, R., Nixon, L.L., (2010) Medical Ethics and Humanities. Jones and Bartlett Publishers, Sudbury, MA. p. 277

born-alive have only a limited lifespan of days to seeks before the exposed brainstem to function

brainstem loses function gradually, with periods of apnea, cyanosis, and poor perfusion before the heart and lungs stop functioneing.

during this period, organs are irreversibly damaged and rendered unfit for use in transplantation


„brain absent“ – new category› that would permit organs to be harvested from

these infants without the necessity for the to be declared brain dead or dead by cardiopulmonary criteria

anomaly of anencephaly is often assoceated with anomalies in other organs, such that deformed organs could not be used for transplantation

in the end, transplant programs abandoned the use of anencephalic infants as organ donors


http://www.nytimes.com/2002/04/30/health/eyes-of-texas-fasten-on-life-death-and-the-premature-infant.html?pagewanted=all&src=pm

http://www.ama-assn.org/amednews/2001/02/05/prsb0205.htm

https://www.msu.edu/course/hm/546/miller_v_hca.htm

Karla Miller, a mother Karla and Sidney Miller, 1999

Aug. 17, 1990: Karla Miller (28) had premature labor she was little more than five months pregnant.

The Millers decided to forgo resuscitation. ''Although it was the most difficult decision we will

ever face in our lives, it was the right decision,'' Mr. Miller said. ''We wanted to allow nature to take its course.“‚

Some 23-week infants lead healthy, normal lives. But many more, even with the best treatment, die in infancy or suffer complications that lead to lifelong disabilities.

No doctor can predict the outcome.

Sidney Miller: 23-week, 615 gram baby Today (2001), she is 11 years old. Besides

having cerebral palsy, she is nearly blind severely retarded incontinent She has never walked, talked or fed herself. She smiles and appears to interact with parents to

some minimal extent she seems to lack the capacity for symbolic

interaction. With good care she could live to age seventy.

it was hospital policy to resuscitate every premature infant born weighing more than 500 grams

Sidney Miller weighed 615 grams the hospital informed the parents it was

obligated by law and an unwritten policy to administer life-sustaining procedures even without their consent.

hospital administrators asked father to sign a consent form allowing ressuscitation, but he refused

the parents sued the hospital, but not the doctors, because they felt that the doctors were just doing what they were told to do by hospital administrators

''The hospital made decisions on their own that affected my life, my wife's life, and more important, my daughter's,'‘

''This case is very simple. It boils down to who has the right to make medical decisions for a child.''

'While we sympathize with the Millers' situation, we believe that we had a moral, ethical and legal obligation to provide care for Sidney Miller, who was born alive.''

In 2000, a legal case in Texas pitted parents against the hospital

The parents had asked that their baby not be resuscitated and instead be allowed to die.

The doctors treated the baby anyway. The baby survived with severe impairments. A trial court awarded the parents $ 60 million,

including $ 13,5 million in punitive damage (this decision was later overturned on appeal)

A Texas appellate court ruling in December 2000 essentially excludes parents from decisions about withholding treatment from their premature newborn unless the infant is considered to be "certifiably terminal“

"The doctors and nurses were legally, morally and ethically obligated to provide care to Sidney Miller."

"It seems to presuppose that there is a clear black-and-white line between those [infants] who are clearly going to die and those who are clearly going to survive," said E. Haavi Morreim, PhD, professor in the Dept. of Human Values and Ethics at the University of Tennessee Health Science Center in Memphis.

"The court did not appreciate the nature and magnitude of medical uncertainty and the burdens that are imposed on the child in order to pursue what is sometimes a very small chance of survival."

While recognizing that parents ordinarily have the right to consent to or refuse medical care for their children

the Court also recognized that an exception to the parental consent requirement arises when an emergent condition exists and treatment must occur immediately to prevent the death of the child.

The Court found that the doctor's initial resuscitation in Miller was justified because the situation was an emergency and there was not enough time necessary to get consent from the parents or from a court.

2003: Texas Supreme Court upheld an appellate court's decision to overturn the ruling.

Justices said the hospital didn't have hours to seek the court order, that doctors had only moments to make a decision immediately after the baby was born.

the court concluded that physicians in emergencies are permitted to err on the side of the preservation of life.

Thus the court's ruling is in direct conflict with the Child Abuse Prevention and Treatment Act Amendments of 1984, which are commonly referred to as the Baby Doe Regulations.

"When you're talking 22, 23, even 24 weeks' gestation, every child would be terminal if we chose not to act,“

"If we decide to act, we can't predict who's going to survive and who's not going to survive.„

http://www.ama-assn.org/amednews/2001/02/05/prsb0205.htm

„There comes a point with extremely premature infants... where the risk of mortality and morbidity becomes so significant and the degree of burden and the prospects of benefit so suffused in ambiguity and uncertainty that a decision as to whether to institute or continue medical treatment properly belongs to the parents“

John Paris

Sidney continues to require exceptional medical attention.

She is a quadriplegic, blind, has cerebral palsy and cannot speak.

Sidney Miller at her home in April 2002.

when parents are given the choice between trying a desperate treatment that has a small chance of short-term success or withholding treatment and letting their baby die, most parents choose treatment most of the time.

the cases in which either a physician or a parent wants to withhold treatment are rare.

the cases in which both physicians and parents agree that treatment should be withheld are rarer.


2004: Rowland (28) was pregnant with twins doctor in LDS Hospital in Salt Lake City

recommended an immediate caesarian section because the fetuses were in poor health

she left the hospital against the doctor´s advice

ten days later Rowland gave birth at another hospital one child was born alive, other was stillborn

Rowland was charged with first-degree murder, demonstrating „depraved indifference to human life“

The story is complicated by the fact that Melissa had four other children (two of which were previously delivered by cesarean section): two were given up for adoption, and one was taken away by child protective

services. she ended up in St. George, Utah, when

she and her partner ran out of money. She became pregnant with his child.

She carried a diagnosis of oppositional defiant disorder had been convicted of felony larcenyas well as endangerment of another child in

the past. She apparently had traveled from

Florida to Utah in order to give these twins up for adoption, and had sought no prenatal care.

On December 25 she contacted one hospital by telephone complaining of no fetal movement and was advised to go to a hospital immediately. She did not.

She was then seen on January 2 by a physician at another hospital who recommended an immediate cesarean section due to oligohydramnios (abnormally small amount of amniotic fluid), fetal growth retardation, and repetitive fetal heart rate decelerations, but Melissa left against medical advise

She presented to another hospital on January 9 to see if her babies were alive; no heart rate could be found on one of the twins by external monitor, but again Melissa left against medical advice.

Finally she returned to one of the hospitals on January 13, and was delivered by cesarean section; twin A was a stillborn male infant, and twin B, a girl, was found to have cocaine and alcohol in her blood at birth.

The medical examiner determined that the stillborn male had no congenital anomalies and had died about two days prior to delivery.

On January 2, 2004, Dr. Sean Esplin advised her to have an emergency cesarean section based on low amniotic fluid and poor fetal growth and vital signs

Mrs. Rowland refused to consent to a procedure that had substantial risks for her and no benefits

She eventually consented to a cesarean section on January 13, 2004, delivering one baby daughter and a stillborn male fetus. The daughter tested positive for cocaine and alcohol.

The Salt Lake County District Attorney’s Office filed murder charged under a state statute establishing a fetus as a person for the purposes of criminal prosecution and a theory of conduct evincing a depraved indifference to the value of human life.

The legal landscape for prosecutions of mothers for injuries to their children in utero is far from clear.

The facts themselves are very much in question.

Did Mrs. Rowland refuse the c-section because she did not want the scarring?

because she preferred not to have the procedure because of the risks to her own life and health? C-section carries a small, but real, risk of

maternal mortality. Some reports state that Mrs. Rowland simply

preferred not to have the child at the particular hospital she was in on January 2. Her choice to have the baby at another facility

could impact her intent or degree of recklessness.

Charging a mother with murder for willfully contributing to the death of her unborn child was seen by many as

an egregious violation of a woman’s autonomy rights

step to undermine abortion rights by conferring the status of personhood on the unborn

Her sentence of consecutive prison terms and fines were suspended in lieu of 100 hours of community service and 18 months of probation, including completion of outpatient mental health substance abuse treatment a rehab program a parenting skills class.

Melissa, however, left the state and complied with none of her probation stipulations.

Ultimately, her surviving child was removed from her home as well.

The Utah district attorney declined to have Melissa returned to the state.

http://www.bbc.co.uk/news/magazine-12987504

So What If My Baby Is Born Like Me?

The nature of the condition means that any child Jono fathers will have a 50 per cent chance of contracting Treacher-Collins.

Some comments...

"I find it interesting how some people so quickly reduce a disabled or ill person's life to a 'life of misery', and therefore a life that shouldn't be if at all possible. I would want to know how many disabled people those who hold such opinions actually know. It is possible to live a full life with disabilities - just more challenging."

"I am 32 and still suffering from my father's hereditary disability and I can tell you that I hate him for that. He knew he will pass it on to any child of his and yet that wasn't bad enough. I regret his selfish attitude and I haven't spoken to or seen him in many years because of this. You are right to ask you some questions: make sure you find the right answers not just the ones that suits you."

"The assumption that the less-abled live exclusively painful, distressing lives is troubling. Yes, it is hard and difficult. Are many of you really suggesting they are better of dead, or not existing at all? Perhaps you should ask a few disabled people. Yes, they suffer but few want to die, and those that do, require more care and love, not to hear that science should eradicate their very existence"

http://www.nytimes.com/1999/04/25/nyregion/disabled-married-their-own-mount-kisco-couple-are-among-those-with-handicaps.html

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