Every anticipating mother and father want one thing and that is a healthy baby to hold, caress, and take home. Unfortunately there are too many cases when a baby is born with a terminal illness that also causes severe physical and mental disabilities such as heart defects, brain hemorrhages, deafness, blindness, and mental retardation. Such conditions are caused by diseases such as trisomy 13 or even premature birth. Medical technology has advanced incredibly over the last half century giving doctors the ability to prolong the life of an infant in such conditions through medical interventions given at different neonatal intensive care units across America.
Hence many ethical issues arise.
- Should life always be extended?
- To what extent should the religious beliefs of the child’s parents be considered ? should that be the decisive factor or should it be regarded as subordinate to the health care provider’s expertise?
- Do some burdens of treatment make life extension immoral?
In order to answer these questions different cases of infants born with these conditions will be examined. The case of a baby with trisomy 13 and of another newborn born prematurely will be the focus. Recent court rulings in similar cases will also be examined to determine the judicial attitude towards this dilemma.
Case #1 Michael
The first case is that of Michael a baby born with Trisomy 13. Below is a summary of Michael’s case which appeared on the Mount Sinai Journal of Medicine Vol. 73 No. 3 on May 2006 in the article “When Staff and Parents Disagree,” by Linda B. Siegel, M.D. Michael was born on term with good prenatal care and was suppose to be a healthy baby but upon birth he was admitted to the neonatal intensive care unit (NICU) for being dysmorphic and small for his gestational age. At six days of age he was diagnosed with trisomy 13. Michael had the following symptoms associated with the disease.
After three months in the NICU he was discharged to a chronic care facility due to his fragile state and ongoing medical needs. According to the article such a case occurs in “approximately one in five thousand live births“. The disease presents with many associated congenital anomalies including “heart defects, brain defects, breathing problems, seizures, severe mental retardation and deafness.”
” About 50 % of patients with trisomy 13 will die within the first month of life, and only 5-10% will survive for more than one year.”
Shortly after Michael was readmitted to the hospital he continued to have respiratory problems related to aspiration of his feeds. The aspiration appeared to be related to his underlying neurologic impairment and he was started on nasogastric (NG) tube feeding. Michael’s respiratory status detoriated and he required intubation.
“Michael had a difficult time while intubated and required sedation and paralysis to maintain his oxygen levels. He had frequent life -threatening episodes despite being on a ventilator. six days after intubation, he was diagnosed with a seizure disorder and was started on medication. It soon became clear that Michael would not be able to come off the ventilator quickly, and discussions about long-term plans were held with the family.”
Michael’s parents were presented with two options:
- Withdrawal of support with palliative care.
- A tracheostomy and at least short-term ventilator support.
Ultimately the parents chose to have a tracheostomy placed for airway protection and ventilator support. It is clear from the article that this was not the choice the medical team viewed as appropriate. It is important to understand why the healthcare team wanted to withdraw support and provide palliative care instead of performing a tracheostomy. The medical team viewed the treatment requested as futile for various reasons.
- First they felt that Michael “was suffering significantly” from treatment. Michael “appeared uncomfortable, especially with suctioning and other medical interventions.”
- Furthermore: “Michael did not appear to get any pleasure form life. He did not smile and did not seem to recognize his family.”
- His prognosis for neurologic function was extremely poor.
Medical professionals health care providers “see many neurologically impaired, cronichally ill children who suffer through recurrent hospitalization and medical interventions, only to die a premature death.” Thus, it is clear that the medical team had the child’s best interest in mind.
Now lets look at the parents reasoning behind their choice. According to the argument the parents had educated themselves about trisomy 13 and understood the prognosis, but “at the same time they had read on the Internet about children who had survived with the condition for more than a year” and for obvious reasons “they were holding onto that image very closely“. Thus the obvious difference between the parties is their measurement of hope for Michael. The doctors thought Michael had almost zero hope for survival based on their experience. Furthermore they seem to put more value on the quality of life Michael would have while the family’s decision seemed to have focused on keeping their child alive as long as possible.
Case # 2
Case number two is taken from another article, “Understanding, Avoiding, and Resolving End-of-Life Conflicts in the NICU” by Arthur E. Kopelman. A baby weighing one pound and two ounces was delivered at 22-24 weeks’ gestation (about 3 months prematurely) by an 18-year-old unmarried woman. The infant’s mother had not known she was pregnant and subsequently failed to receive prenatal care. The infant was intubated after birth and placed on a ventilator.
Soon after the baby was transferred by helicopter to the regional level 3 NICU the following symptoms were observed:
repeated generalized seizures
unresponsive to pain
In addition, an aultrasound study of the infant’s brain showed “a large right-sided grade 4 intraventricular and parenchymal hemorrhage (venous infarct).” Upon discussion of the infant’s prognosis it was concluded that the infant now had less than a 10% chance of survival to discharge and if the infant did survive there was a 90 % chance of severe-to-profound neurological damage which would likely result in “mental retardation, developmental delay, and cerebral palsy“. An infant born at such an early stage was also likely to develop retinopathy of prematurity which has a moderate chance of causing reduced visual acuity or blindness. Once again the poor prognosis for survival, and the likelihood of serious developmental problems if the child even survived were discussed with the infant’s mother and the grandmother. discontinuation of life support was suggested as an option by the medical staff but the family asked that full life support be continued. The article sates that the staff became “extremely frustrated” for the following reasons:
“The staff didn’t think that the family appreciated how burdensome continuing care was for the infant, and they believed that the infant would probably die despite continuing ventilator support. The nurses perceived that the infant was suffering, and they resented having to care for him 24 hours a day, while the family only paid occasional brief visits.”
Some nurses even stated that they felt the family was “forcing them to torture the infant by continuing pointless care” and others questioned whether the family fully understood what the infant’s life would be like if he survived with severe disabilities such as “developmental retardation, cerebral palsy and blindness”. As a result some nurses felt disturbed enough that they asked not to be assigned to the infant.
Case number three is that of Emilio Gonzalez, a terminally ill patient who was blind, deaf, and dependent on a ventilator for life support. This case was taken from two different sources. The first is an article, “Case Puts Texas Futile-Treatment Law Under a Microscope”, from the The Washington Post website on April 11, 2007. The second source is another article titled “Emilio Gonzalez, Baby in Texas Futile Care Case, Died Saturday Night“. This article appeared on Lifenews.com on May 21sth 2007.
After birth Emilio was diagnosed with Leigh disease and had spent most of his life “asleep from the powerful drugs administered to him” and breathing through a ventilator because he could not breathe on his own. Because of this disease, Emilio also could not eat on his own and could not purposefully move. After a year and a half of life in this state the hospital declared his case “medically futile” and gave the mother ten days to find another facility that would take take care of her child. The hospital doctors “declared that continuing treatment is potentially painful and is prolonging the child’s suffering”. After the time expired the hospital would shut down Emilio’s ventilator killing him in minutes. After failing to find another facility he mother, with the help of several lawyers, persuaded a judge to keep the hospital from discontinuing life support until another facility was found.
Emilio “died naturally with no withdrawal of treatment” at 19 months old.
Would you want to be kept a life if you were in such conditions?
It is essential that decisions regarding withdrawing or denying treatment be taken with only the child’s best interest in mind. Thus the idea of quantity versus quality of life for a patient cannot be ignored. It is just immoral to keep a child alive simply because medical technology enables us to when that child will not be able to have a good quality of life and when further treatment will only prolong life without enhancing the quality and even causing pain and suffering. This judgment should be left to a panel of doctors and enough time should be given to the family to find another facility that might be willing to take their infant in.
That being said I am in no way advocating euthanasia for terminally ill infants just because they are terminally ill or suffer from a physical or mental disability. Although an infant with such disabilities will never be able to do simple tasks such as learn how to ride a bicycle or learn algebra they could still enjoy life in their way. Another reason why children facing such circumstance should be withdrawn from treatment is that the treatment that would be wasted on them could be used to treat another patient with a higher probability of surviving and recovering.
There is a point when a disease such as trisomy 13 completely cripples an infants life to the extent that they will never be able to live a significant life. Some would say that every infant’s life should be extended as long as it is possible because of their religious background. It is in these cases when a patient should be allowed to die a natural death and nature should be let to take its course.