Ethical Dilemma in Withdrawing Life-Sustaining Treatment for Severely Disabled Infants - Research Paper

Introduction

The neonatal care intensive unit has always been faced with the ethical dilemma of withdrawing or life-sustaining treatment for infants. It becomes an even more contentious issue when the withdrawal of life-sustaining treatment has to be done to an infant who might otherwise survive due to severe mental disability or any other form of disability. During continuous practice one of the reasons that influence the decision of withdrawing life-supporting treatment is the prediction that the infant will suffer a severe intellectual and mental disability. Professionally, the ethical decision should be made in the best interest of the infant. However, the dilemma is raised from the fact that intellectual disability might affect the interest of the infant. In this paper, the focus is to unravel this bioethical issue regarding infants. Through unraveling the ethical issue, the paper tries to find an answer to the following underlying questions. Why should neonatal care consider intellectual disability to be more important that physical disability especially to the future interest of the infant? In this paper, the focus is to unravel and reveal answers to some of these bioethical dilemmas.

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Discussion

When deciding on the neonatal intensive care unit, it is important to consider that this technology is barely 40 years old. There are infants in the previous decades that died but would have been saved. In equal measure, some infants have been saved by the neonatal intensive care unit but would have succumbed. Apart from just surviving and prolonging the infant's, the critical issue that most doctors and parents grapple with is whether the infant will be able to overcome her overwhelming disabilities. At times when there is a possibility of a severe or overwhelming disability prolonging the infant's life might not be in the best interest of the child or the infant. Some neonatologists have been daring enough to publicly confess to the parents that sometimes going ahead with active treatment might not be the best option for the infant. From the counter-arguments mentioned above, it is quite clear that the nature of the decision is controversial. The legal uncertainty of this bioethical issue arises from the fact that treatment might be withheld or might be withdrawn from an infant who might otherwise survive, even with the presence of intellectual disability.

Important Biological Factors to Consider Before Withdrawing Treatment

The most important biological factor in determining whether to withdraw or withhold treatment is the predicted presence of severe intellectual disability. The medical teams have to deliberate with the parents and interested parties on the best decision to take. Several doctors and parents have very deep misgivings on continuing to practice treatment even with the discovery that there are serious intellectual disabilities. It is to identify whether the infant has serious disabilities that an MRI is compulsory. An MRI has to be conducted to affirm the prediction that the infant might suffer a serious intellectual disability. The decision is rather simple when the child is only suffering from a physical disability. The neonatologists and the parent are rather relaxed and can only provide maximal treatment and palliative care. Extreme physical disability conditions will only require palliative care. A perfect example is a congenital heart problem, where the parent offers to take care of the child. The decision should only be taken when severe brain damage is evident.

Professional Opinion From Neonatologists

Borrowing from an expert's opinion, the first neonatologists' writers Campbell and Duff supported the argument that withdrawal of life-sustaining treatment in newborn infants might be necessary. In giving their decision, they justified their claims based on the cognitive disability level. The two believed that the most important criteria which can be used to justify the withdrawal of treatment are the degree of abnormality. They argued that, if the condition caused absolute abnormalities, damages and injuries to the central nervous system there could not be any need to continue with treatment. The duo noted that all the conditions which led to the removal of treatment are those that the infant cannot afford to live with, in the future. A number of the conditions involve serious neurological deficits that cannot be salvaged in the future when infantry is over. The above analysis by the two professionals is proof that conditions that merit treatment do not involve cognitive impairment. Cognitive impairment conditions are always severe to the extent the interest of the child might be to withdraw treatment than to uphold it.

The Medical Interest of the Infant and Biological Conflict

In analyzing whether to withdraw or withhold life-sustaining treatment biological experts argue from the point of the interest of the child, about the medicine applied. To determine the best interest of the child professional bodies create a relationship between medicine and intellectual disability. An argument for sustaining treatment would be that it is discriminatory to think that withdrawing treatment is the best interest following false assessment based on the assumption of how those infants with the disability choose to live their medical life in the future. The infants might not need to socialize in the future or to go to school and college, but can they sustain living with drugs daily. Best interest is biased since the people who make the decision assuming that the objections of the future are constant. However, these claims of the future being bleak are refutable. Best interest decisions for adults are autonomous. For children, a lot of parties are involved to limit the bias on assumption as mentioned in the earlier argument. For infants, the best interest decision is made by a proxy. The proxy is usually a parent and most likely the courts. The court has to be involved to help weigh up different competing interests. The court sets to adjudicate the course of action that leads to the balance of the net benefits and seeks to release the burdens of the child. While making medical decisions, professionals are expected to analyze if the affected is bound to benefit or get harmed by the decision that has been taken. The professionals are, therefore, expected to analyze the prudential value that is associated with withholding or withdrawing treatment. Using best interest as a perspective to justify withdrawing treatment plan from an infant can be related to a situation found in, 'Oryx and Crake' novel by Margaret Atwood a scientist is held up with the dilemma of setting the record straight of how the biological disaster is released that claims many lives. Biologically, it is only fair that Crake tells the secret of how the virus is released. However, logically he is focused on saving his childhood friend from the Oryx, which impairs his scientific judgment. At the end of the novel, he loses his friend. The above analysis provides a conflicting situation between biology as a science and our interest as an individual which might most definitely end in a disaster.

Severe Nature of Intellectual Disability Diseases and Their Lack of Medication

Apart from best interest, another justification for withdrawing treatment is the severe nature of intellectual disability on the affected children and lack of medication. Intellectual disability includes a spectrum of impairment which includes thinking, communication and self-awareness. To the extreme levels, the disability extends to the level of rudimentary consciousness. A perfect example of such a rudimentary condition is anencephaly. Anencephaly makes infants be born with their skull and spine exposed to the air. Their brains become incompletely underdeveloped. Infants with these conditions are likely to die shortly after treatment is withdrawn. Occasionally, if the parents insist on keeping him alive, the infant can be sustained for months and years. It is, however, unclear how the child will survive without treatment. In such conditions, it is only fair that the treatment is withdrawn. It becomes very difficult to argue for these infants on how they will survive out without treatment. The obvious decision which is also less popular has to be considered. The treatment for the infant has to be withdrawn. Decisions of withdrawal of treatment are highly considerate but less popular for a condition where there is a lack of anatomical substrate. Sensory processing, cognition and motor conditions dictate sensory awareness and if the infant is incapable of all these conditions, it is only fair that the parents accept that withdrawal is the best treatment option that they could afford to them. Creating a deep personal relationship with the infant or even nurturing them scientifically is something out of the question. As described above, these conditions provide a fundamental challenge for any professionals to out intrinsic value to human life.

Lack of drugs to treat severe conditions

Lastly, the rise in burden can also cause the withdrawal of treatment from an intellectually disabled infant. In terms of burden the best example that can commonly be referred to as a condition called; Infantile Tay Sachs. Infantile Tay Sachs is a disorder that causes progressive neurological deterioration. The child might look healthy at the age of six months but derails slowly as time continues. At the age of one year the child experience severe epilepsy, cognitive decline. In the second year, the child might be fully mentally deteriorated. Neonatologists are yet to find a treatment for the condition and mostly find a treatment option in withdrawing care from the disabled infant. The infantile disease also called Lesch-Nyhan Syndrome is an intellectual disability that the parents of the infant have to accept the withdrawal of treatment. The severity of the disease within the short time that the infant exists become burdening to both the infant and the family. The burden of dealing with the condition justifies the withdrawal of treatment on the infant at birth or during neonatologists' care. Even worse, the affected infant suffers from clinical depression. Research has shown that infants affected by intellectual disability are vulnerable to clinical depression than any other group. Clinical depression becomes a burden to the infants when they are aware and are conscious of being from being discriminated against by other people. To ease the burden on the parents and the infant, it is a wise decision to withdraw treatment.

Conclusion

The paper has exploited three important biological aspects that might justify the withdrawal of treatment from an infant suffering from an intellectual disability. Apart from analyzing these logical reasons, the paper also analyzes expert opinion from neonatologists who have dealt with infantry cases and confess that there is justification for treatment withdrawal. The paper has also analyzed objections that prove what decision of best interest has to be anchored upon. As mentioned in the thesis statement, the withdrawal of treatment from an intellectually disabled infant might be an unpopular decision but necessary.

Bibliography

Atwood, Margaret. "Margaret Atwood on What 'The Handmaid's Tale' Means in the Age of Trump." The New York Times 10 (2017).

Branford, D. "Factors associated with the successful or unsuccessful withdrawal of antipsychotic drug therapy prescribed for people with learning disabilities." Journal of Intellectual Disability Research 40, no. 4 (1996): 322-329.

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