Ethical Considerations Regarding Keeping Newborns Diagnosed With Epidermolysis Bullosa Alive (Essay Sample)

Ethical Considerations Regarding Keeping Newborns Diagnosed With Epidermolysis Bullosa Alive
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Every year several newborns are diagnosed with Epidermolysis Bullosa (EB) (Fine, 2010). Epidermolysis Bullosa is classified as a group of rare inherited disorders, generally considered as a skin disease CITATION Jac09 \t \m Den12 \t \m Gol14 \m Hac14 \l 1033 (Denyer, 2009; Denyer & Pillay, 2012; Goldschneider, et al., 2014; Hachem, et al., 2014). There are several types of Epidermolysis Bullosa however, they all have one common feature; all patients often experience recurrent blistering that may be due to minor or major traction. Since there is no specific treatment for this condition, physicians, and the parents or guardians focus on both acute and chronic pain care.
It is most difficult for a mother whose infant has been diagnosed with Epidermolysis Bullosa to cope with it. However, they have no choice but to accept the situation. In fact newborns with severe forms of Epidermolysis Bullosa experience pain similar to that of a third-degree burn (Conger, 2015). When taking care of infants with this condition utmost ethical considerations are or ought to be observed by both the physicians and the parent. Empirical research indicates in that common conditions patients or parents of infants diagnosed with severe illnesses often give the physicians a priority in the decision process and provision of information needed (Budych, Helms, & Schultz, 2012). However, it is different for rare diseases such as epidermolysis Bullosa due to its low prevalence as well as lack of expertise (Fine, 2010; Budych, Helms, & Schultz, 2012). Parents are forced to become informed about their child’s disease state. This paper seeks to elaborate on the ethical consideration of keeping the newborn diagnosed Epidermolysis Bullosa alive with regards to the end of life decisions, diagnosis, and quality of life sustenance and patient-physician relations.
Background
Epidermolysis Bullosa was first diagnosed in the late 1800s. It is caused by mutations affecting the crucial basement membrane components such as the proteins, lamina, keratin or collagen (Conger, 2015). It can be categorized into four major types depending on the site of blister formation. The four types include Epidermolysis Bullosa Simplex (EBS), junctional epidermolysis Bullosa (JEB), dystrophic epidermolysis Bullosa (DEB), and Kindler Syndrome (KS). Each one of these types of Epdermolysis Bullosa is further subdivided into other subtypes depending on other key factors namely; mode of transmission, phenotypic, immunofluorescence molecular and ultrastructural combinations (Hachem, et al., 2014). Molecular testing can be done at the initial stage of the cleavage level. The extent and severity of the mucosa membrane and skin lesions vary distinctively in the different types of Epidermolysis Bullosa and relation to the age of the patient. In several types of Epidermolysis Bullosa, the cutaneous and extra cutaneous expressions and complications lead to high morbidity and even premature death (Hachem, et al., 2014).
The rarity of this condition and its phenotypic variability has greatly challenged the provision of appropriate care to the patients. Moreover, despite considerable effort in the development of cure using different molecular and cellular based strategies, there is no cure for Epidermolysis Bullosa (DEBRA Canada, 2015). Extensive molecular strategies and clinical trials are under way. Stanford team began the first human trial in the world by grafting the type 7 collagen protein onto a patient in November 2013 (Conger, 2015). Type 7 collagen gene was discovered by a team of researchers from Shriner’s Hospital Oregon in the 1980s (Conger, 2015). In Canada, several research studies are under way to find treatment for this condition. It is with hope that replacement of the defective cells in the stem cells that develop into keratinocytes in the skin of Epidermolysis Bullosa patients will result in the keratinocytes producing type 7 collagen genes essential in holding the dermis with epidermis. This will in turn reduce frictions between the dermis and epidermis when under force and subsequently inhibit blister formation.
In Canada Epidermolysis Bullosa affects one in every 30,000-50,000 births (DEBRA Canada, 2015). The children born with this condition are regularly referred to as the "butterfly children" because their skin is too fragile to touch. Currently, the available methods are patient management that is centered on daily wound care protective bandaging and pain management (DEBRA Canada, 2015). The daily routine of newborns with severe forms of Epidermolysis Bullosa will experience painful events, this calls for the need for intervention. It is therefore paramount to look into the needs of these newborns and the available options for taking care of those needs. Together, the practitioner and the parents can transform the available guidelines into the personalized care plan. In all this ethical consideration is given priority with regards to the overall outcome of the condition. It is to be anticipated that the needs of each newborn will be dynamic, which calls for periodic review of the needs to optimize care at each stage of the child’s life.
These newborns go through a great deal of pain during their childhood. To parents, it is stressful. This condition is non-contagious but genetically inherited implying that one in several children in a family with this trait can develop it. A parent may give birth to the healthy firstborn only to have the second or third born with this condition. For instance, Garrett Spaulding 18 years old was born with this condition on January 25th, 1997 at Stanford Disease Clinic (Conger, 2015). Spaulding is the fifth born to their family. The newborns skin was blistered and falling off due to its fragility and sensitivity to touch. The excruciating pain the wailing newborn experienced was heart-wrenching to his parents. The father had to be admitted in an hospital as he fainted on receiving the news. He was diagnosed with the recessive dystrophic epidermolysis Bullosa, the second most common form after junctional epidermolysis Bullosa (Conger, 2015). Some parents opt to end the life child to relieve them this unbearable and unrelenting pain especially in severe forms of Epidermolysis Bullosa.
End of Life Decision making
In Canada, there is a constant debate about end of life issue (Blackwell, 2014). Much of the assisted death by physicians has centered on the adult patients. However, the debate has been intensive in recent past especially after a released report by the Royal Society of Canada’s 2011 panel on bioethics CITATION Sch11 \l 1033 (Schuklenk, Van, McLean, Upshur, & Weinstock, 2011). The argument is that in newborns with severe conditions, the act of ending their life should be acceptable. It faces stiff criticism from religious and other groups. In Netherlands, at least two newborns have been euthanized to bring to an end to what the physicians described as unrelenting pain (Conger, 2015). In Canada, it is still a new approach especially considering that its implementation on adults is still against the law. United state already has five states applying laws that permit euthanasia of adults (Blackwell, 2014).
Since the law regarding euthanasia of adult or newborns is not available in Canada, the clauses in the Criminal Code of Canada still considers it as illegal and should be respected. Also, the ethical aspect surrounding this matter should still be base on the international governing rights available. The International Covenant on Civil and Political Rights in its Article six prohibits arbitrary deprivation of life (Joseph, Schultz, & Castan, 2004). This is ensured by the Criminal Code of Canada subsection 223(1) which states a child is recognized as a human only "when it has completely proceeded, in a living state, from the body of its mother" (Criminal Code, 1985). It guarantees the newborn full rights as outlined in the Canadian rights and Freedom Act. Moreover, It Prohibits assisted end of life to newborns upon conception however, it does not provide clarity when it comes to a fetus as other diagnostic measures such as Prenatal diagnosis (PND) may prompt termination of life of a fetus in the case of detection of severe genetic disorder such as Epidermolysis bullosa.
The international human rights law ensured by the Canadian Criminal Code, in some sense considers a parental competency over the child’s right to life as incompatible CITATION Joz10 \l 1033 (Dorscheidt, Verhagen, Sauer, & Hubben, 2010). The reason behind this view lies in an exceptional quality attributed to the child’s rights to life. It is attributed to its inalienable character (Dorscheidt, Verhagen, Sauer, & Hubben, 2010). It holds that exercise of the right to life cannot be transferred to others, and in due respect it cannot be annulled, suspended or made void, and the one who holds it also cannot waive it. Moreover, Article 6 of the United Nation Convention on the rights of the child characterizes the rights of a child as inherent. This implies that right to life is intrinsically tied to the human person (the child). It is perceived that this inherent right to be self-evident. Since it is non-transferable, parents may not be entitled to renounce the newborn’s legal protection of its fundamental right.
When interpreting this inalienability doctrine as well as an inherent quality of life in the context of the end of life decision for neonates with severe forms of Epidermolysis Bullosa is yet, under debate. Most parents despite the child condition would rather keep it. As in the case of Garret Spaulding whose parents agree...