In this tragic story the parents represent the utilitarian theory of ethics, which supports the greatest good for the greatest number of people . This definition is rather vague as it implies that sometimes one or more people may have to incur a loss in order to save a greater number . Taking into consideration the psychological aspects of the case, the process of bringing another child into the world to save the existing one that is dying is rationalized by the parents. For a parent it is the greatest responsibility to look after the children’s health and safety. Moreover, the parents are convinced that no one can understand the feeling of helplessness when the child is dying and there is nothing that can be done to help the tragic situation. Therefore, they justify their decision which they would not probably have taken up ever before and may even believe now that they are promoting life: Brian shakes his head, clearly uncomfortable. “You don’t know what it’s like, he says quietly, until your child is dying. You find yourself saying things and doing things you don’t want to do or say. And you think it’s something you have a choice about, but then you get up a little closer to it, and you see you had it all wrong’’ .
What would one do when faced the slightest opportunity to save one’s child? The consequences of losing it due to the fear – the death of the loved child and the guilt – would not let them live peacefully. This guilt was the driving force behind Kate’s parents’ decision to create Anna. Parents as people who are ready to make any sacrifice for their children and become kidney donors, which also naturally requires a change of their lifestyle, believe that each member of the family shares this belief: ‘’I thought it was what she wanted” . The best way to summarize the dilemma of the parents is stated by Kate’s mother: “Since when does anyone get the option to do what’s easiest?” . It is also a great reference to the utilitarian perspective in which the right decision is not always the easiest one to make because there are people harmed (Anna) or just not benefited (Jesse), but it is necessary. After all, the thought of the new child’s death during any medical procedure surely did not cross the parents’ minds. They expected Anna would only have to overcome a few blood transfusions and bone marrow transplants, and they believed it was worth the girl’s sacrifice: ‘’The first time I gave something to my sister, it was cord blood, and I was a newborn. She has leukemia–APL–and my cells put her into remission. The next time she relapsed, I was five and I had lymphocytes drawn from me, three times over, because the doctors never seemed to get enough of them the first time around. When that stopped working, they took bone marrow for a transplant. When Kate got infections, I had to donate granulocytes. When she relapsed again, I had to donate peripheral blood stem cells’’ .
When it comes to fairness, the question is whether an invasive procedure such as a kidney transplant that becomes risky for both children can be justified only because it may potentially cure one child but cannot be in the other child’s best interest: ‘’Did you tell your parents you don’t want to donate a kidney? They don’t listen to me (…) They don’t really pay attention to me, except when they need my blood or something’’ . Sara, Kate’s mother, wants her daughter to undergo the procedure because it is easier to live and breathe with the image of a successful surgery in the future than the bleak present.
In terms of fairness, parents should treat their children with the same amount of love and care, despite how difficult it may be, what definitely does not happen in Fitzgerald’s family: ’’You think something’s going on with Anna? Compared to Kate’s kidneys and Jesse’s sociopathy, I’d say she’s doing fine’’ . It is obvious that in case of one child’s terminal illness, the parents are put in an extremely difficult situation where the time needs to be shared among all the children and it is often impossible to do. The parents become occupied with their drama so strongly that they forget to give their precious time to other healthy children who need their attention as well.
Another issue is that in “My Sister’s Keeper,” Anna’s parents reward her with gifts after every donation to her sister, because they think this could make up for her all the suffer. And Jesse, who is beyond the direct participation in the savior sibling process, feels neglected and abandoned, which results in his bad temper and causing trouble.
The utilitarian perspective is controversial as it deals with difficult choices that may not seem right at first sight but may have a deeper meaning behind it. Parents have a moral and emotional responsibility to protect all their children, especially when faced with an extremely difficult situation, which renders to be too hard for Sara and Brian, who are unable to keep the family together.
The savior child – Anna
The savior child is definitely the most complex of the figures. The deontological principle of ethics involves one’s sense of obligation and duty and the actions that one does despite the consequences, either good or bad, that might come out of them . Anna – the savior kid – fits this profile perfectly as she is forced by her parents to continue donating to her ill sibling Kate, because they are the ones who have control over the medical procedures she is subjected to. In her case the entire situation culminates when her visits to hospital become multiple: ‘’Molecular relapse and granulocyte and portacath – these words are part of my vocabulary (…) When Kate needs leukocytes or stem cells or bone marrow to fool her body into thinking it’s healthy, I’m the one who provides them. Nearly every time Kate’s hospitalized, I wind up there, too’’ .
For Anna being a continuous donor is a great infringement of her autonomy. The question is where is the turning point at which a savior child, who grows up and matures faster than other children, can be considered an adult and have right to make medical decisions regarding their own body? According to Anna, “The truth is, I was never really a kid. (…) I guess maybe my brother had his moment in the sun for the four years he was alive before Kate got diagnosed, but ever since then, we’ve been too busy looking over our shoulders to run headlong into growing up.’’
Therefore, which aspect should be considered decisive – an invasive surgery with potentially life-altering effects or simply the fact that the child no longer wants to be used? The Kantian imperative corresponds strongly with the deontological perspective and states that a child is not the means to an end but rather the end itself. His principle is to “act in such a way that you treat humanity, whether in your person, in the person of any other, and always at the same time as an end and never merely as a means” . Despite the parents’ best intentions, the new child brought into the world has primarily a role to fulfill: ’’They sat me down and told me all the usual stuff, of course – but they also explained that they chose little embryonic me, specifically, because I could save my sister, Kate. “We loved you even more,” my mother made sure to say, “because we knew what exactly we were getting.”’’ . The savior child is born with the certain task and no one asked Anna if she wanted to meet her parents’ needs. The girl suffers inner dilemmas regarding her existence in the world determined by her sister’s illness, and also the fact that she may be a disappointment to the family: ‘’It made me wonder, though, what would have happened if Kate had been healthy. Chances are, I’d still be floating up in Heaven or wherever (…)’’.
Another ethical issue regarding the unnecessary medical procedures the savior child is subjected to is commodification. Immediately, at a young age Anna begins to feel anxiety and doubts about the true love of her parents and she asks herself questions whether they needed her only for her tissues and organs from the start. She says to her parents: “I’m sick of being a guinea pig. I’m sick of nobody asking me how I feel about all of this. I’m sick, but I’m never fucking sick enough for this family” . The pressure and frustration overwhelm her as this is a critical moment for a child, who is growing up with the belief that the parents are the greatest authorities and always know best. Suddenly, there comes a moment of doubt and speaking out against all the experience gained at home. It turns out that parents are not always right and do not always make proper choices, like everyone else. This means that if the parents’ medical decisions are uncomfortable to the savior child, the child should be granted medical emancipation. The savior sibling knows when there is the right moment for them to start making autonomous medical decisions, especially if this moment occurs after finding out that an invasive surgery such as a kidney transplant will take place: “My sister is dying, and my mother wants me to donate one of my kidneys to her”. The matter needs to be discussed with the parents: ‘’ Obviously, you’ve agreed to be a donor for your sister before . She hesitates [Anna], then shakes her head. “Nobody ever asked”. In a situation like Anna’s there should be a law established, which gives the savior child a right to withdraw from medical procedures regarding donation before the age of 18 if this is what the child really wants.
The ill child – Kate
The next figure of the story is the ill child, Kate – the involuntary initiator of the process. The ontological perspective can relate to both the savior sibling and the ill child, but it pertains most to the ill child because it is “the study of being” . Kate is being kept alive by a sibling, who was created with that “mission” imposed on her. The ill child may realize that it is not right to force the savior sibling to be a commodity just for their sake. The kid, like Kate, may also become aware of the serious damage her disease is causing to her family, tearing it apart, which can make her feel guilty for it: “I’m just sick of waiting for something that’s going to happen anyway. I think I’ve fucked up everyone’s life long enough, don’t you?” .
Of course, the close relationship between the siblings is stronger than other normal sibling bonds. Kate will always feel she is a kind of a debtor to her sister for all the sacrifice she gave to her. Despite the roles,the sisters were put into, Kate never wanted to ruin her sister’s life or steal the parents’ attention that Anna also deserved. She blamed herself for being ill and making her family unhappy and broken.
There may also occur some strange and uncommon circumstances when the ill child rejects treatment like Kate did. There arises a question if it is caused by the guilt which the girl feels and should she be allowed to do so? And as a consequence there comes another doubt – where is the limit of Kate’s autonomy?
Due to the fact that the ill kid may feel indebted to the savior child they may want their suffering to come to an end. Particularly because they know, that the sacrifice their sibling is subjected to is caused by the parents’ decisions resulting from a strong will to save the ill child’s life: “Then why did you, as Anna’s father, think this invasive procedure, which carried risk to Anna herself and no personal physical benefit, was in her best interests? “Because,” Brian says, “I couldn’t let Kate die’’ . Kate might consider herself as the cause of her sister’s misery. Driven by an altruistic desire to “pay back” the savior child by giving them back a normal, happy life without the medical procedures the ill child may want to end the treatment to express their love, kindness and respect to the savior sibling.
Cessation of treatment prompted by the ill child’s own will, regardless of feeling weak or just not wanting to undergo more medical procedures puts every member of the family in an extremely difficult situation because it means they will have to let a relative die. The society views life as a wonderful gift which needs to be protected and preserved, therefore allowing the ill child to give it up seems unethical and controversial. Refusing the treatment by the savior child because they want to preserve the control over their body and rejecting it by the ill child are two different aspects. The other will bring suffering to the parents who will experience the death of their child: “Maybe you misunderstood. Maybe she was just having a bad day, or being dramatic. “She couldn’t tell you,” Anna replied. “She was too afraid if she killed herself she’d be killing you, too” .
The other sibling – Jesse
The last figure of this dramatic story is the “other” child, who was born before Kate and is not an exact tissue match, which means that he cannot participate in any of the medical procedures. This usually makes him the outsider, the one who is a little forgotten by the parents, sometimes even neglected, and it is all simply because he is not involved in Kate’s life as the rest of the family. Despite Jesse’s better situation than Anna’s and the fact that he does not have to go to hospital, he probably feels even worse, as he is left alone, abandoned while the rest of his family is strongly into the Kate’s disease: ‘’When I was eleven years old I got a skateboard. I never asked for one; it was a guilt gift. Over the years I got quite a few of these big ticket items, usually in conjunction with one of Kate’s episodes. My parents would shower her with all kinds of cool shit whenever she had to have something done to her; and since Anna was usually involved, she got some amazing presents, too, and then a week later my parents would feel bad about the inequality and would buy me some toy to make sure I didn’t feel left out’’ .
The lack of attention at home results in Jesse’s bad behavior at school just to gain the attention he thirsted. He becomes a pyromaniac who recurrently sets old, abandoned buildings on fire and he admits: “I look for places like me: big, hollow, forgotten by most everyone” . When his father, Brian, finds out, he realizes the boy is not the only one to put the blame on: “And do you blame him, or do you blame the folks who should have told him otherwise?” . At this point he refers to himself and Sara, and even though few people would turn to such acting to feel appreciated and important, Jesse’s behavior proves that not participating in a savior sibling process might have emotional and psychological effects.
Conclusions
Any savior sibling case generates a complicated dilemma of the family members in terms of how it will affect them. It is true that people can protest against creating a savior sibling, but only when put into the parents’ shoes can they understand how difficult it is to watch a child die without any chance to prevent it. No one is ever expecting their kid to be perfectly healthy one day and develop a life-threatening illness the next, like Kate. Sara and Brain are not the ones to put the complete blame on for creating Anna; in some way they wanted her to grow up in love and live. However, the situation becomes unfortunate because the savior sibling is a person, with her own emotions, thoughts, feelings, and independent life, not just a bank of spare parts or a commodity that someone can purchase. When Anna said she wanted to stop being a donor, Jesse argued: “Don’t mess with the system, Anna… Kate plays the Martyr. I’m the Lost Cause. And you, you’re the Peacekeeper” . They had their roles, and once the savior child was created, the system started to be controlled by their parents as if the whole situation was a game with the children being the puppets and the parents having to learn how to pull the strings right.