The Right To Choose

Care of the Terminally Ill Child

One of the most common yet heart breaking events that happens in the world wide today is children facing terminal diseases. This is an occurrence in our society that has become so vast that there are hospitals that specialize in pediatric diseases alone. Some diseases are hereditary while others are from the child's living environment, yet others are unexplainable. There are many important decisions to be made when a child is diagnosed with a terminal illness. There are also many obstacles to be faced as well. But above all it is the child's well being that must always come first.

St. Jude Hospital, Lucile Packard Children's Hospital, and UCLA Children's Hospital are the beginning of names of hospitals that were built for the sole purpose of pediatric care. The majority of the patients are children who will remain there until they pass away. In our society the last 20 years over 100 public funded children's hospitals have been built and operating at their full capacity with plans for more to come. Why are there so many sick children?

I have seen an increase in childhood diseases in the last twenty years. I'm not sure if it is because certain diseases are being diagnosed earlier then before or if there is something that is causing the diseases to rear their ugly heads and attack the youth of today. I do know that there is no specific reason. Some diseases are genetic, others because of their living conditions, and some for unexplainable reasons. (Robbins)

Poor air quality exists all across the nation. The food that we eat on a daily basis is less organic and lacking of natural vitamins and minerals for healthy growth. Twenty years ago the snack that was given were fruit or vegetables cut up by Mom that has now been

replaced with potato chips, cookies, and other store bought items loaded with preservatives and other items not designed for healthy living but to make the package more appealing.

Though there is no direct link to the theory that food filled with artificial flavoring and preservatives are the cause of the increase in these diseases but it is something that society needs to sit back and take a look at. Until this happens we will have to focus on taking care of our children and making their time here on earth memorable.

The process of making the decisions for a child can be overwhelming for many parents. Time for anticipatory grieving should be provided when the child is diagnosed with a terminal illness. It is important to ask questions, delegate responsibilities to other family members when necessary, and to discuss the decisions to be made with the child, if appropriate. (Stanford)

The child and family have the right to refuse treatment. Often, options for treatment are offered that may extend the child's life, but not yet proven to be a cure. The quality of life should be considered as well as the possibility of extending it. Many families want their loved ones to die at home in their natural and most comfortable setting. Others do not feel they can emotionally handle the death in their home. Siblings may or may not influence this decision. Therefore, some families choose to be in the hospital and then find the child and themselves are more comfortable at home. Time and circumstances can help to make these decisions. In a personal interview with a 16 yr old boy he says, "I just want to be home with my family. When I am at the hospital I get very lonely. The nurses are great but it's just not the same. Besides, I like sleeping in my own bed, it's more comfortable." (Coontz) A quote from another terminally ill teenager speaks volumes in the mental capacity that society can expect from most children in their same situation. Samantha Weber said, "It can kill me and I know that. When the doctors make decision

about my care they tell me everything. They're not keeping anything from me and I tell them what I think." Love, respect, and dignity are all important factors in caring for a dying child.

Allow them time to be a child by engaging in age-appropriate activities. Many physical changes that occur before death can make the child depressed or withdrawn, by giving them some form of independence and control whenever possible helps them to deal with their situation. Communication, listening, and expression of fears or anger, or just having someone to talk to is important to a child. Comfort in knowing they are not alone in the dying process gives reassurance to the child and helps them to know that they will be missed. Parents are cautioned to continue setting appropriate limits on a child's behavior and not let their guilt or grief inhibit their normal parenting, the consequence of which can be children becoming or feeling out of control. (mcg health)

Along with difficult decisions come difficult situations. There will always be health care professionals who feel that they are doing what is best for the child and do not take the families wishes into consideration. Recently a terminally child and his family faced opposition from one of the hospital physicians.

I called my mom and asked her to come get me so I could be home with my family for Thanksgiving. The next night a bunch of people were at our house telling my mom that they were going to take me and all my brothers and sister away. I'm still not sure why (Coontz)

Child Support Services, along with the physician, appeared on the family's doorstep demanding the return of the child. Even though the child's health was in no immediate danger the family was forced to comply with the doctor's demands. In a personal interview with the mother of the child she said:

My son called and asked me to come get him for the weekend. He is in the hospital the majority of the time because we can't afford a live in nurse for him and he enjoys being around some of the other kids. I know that his time is limited and every minute with his family is precious. The next thing I know Child Protective Services is at my door. One of the