Parental Authority Vs. Child Autonomy Jennifer Amato, NR 328, Ethical Dilemma Chamberlain College of Nursing Abstract This paper presents a case of a 9 year old child who was diagnosed with Glioblastoma Multiforme at the age of 8.
Glioblastoma multiforme (GBM) (also called glioblastoma) is a fast-growing glioma that develops from star-shaped glial cells (astrocytes and oligodendrocytes) that support the health of the nerve cells within the brain.
GBM is often referred to as a grade IV astrocytoma. These are the most invasive type of glial tumors, rapidly growing and commonly spreading into nearby brain tissue (Aans.
org, 2018). She was complaining of pain in her ack, went to the doctor who thought she had a cold that had settled in her back from being wet and sitting in front of the air conditioner, as it was mid-summer. After being on a series of antibiotics, she was feeling better. Two weeks after the antibiotics were complete, she began to experience pain radiating up and down her spine.
At this point she was taken to the doctor and they began to run a series of tests, ultimately resulting in her cancer diagnosis. Unfortunately, this is a rapidly progressing cancer and by the time it was discovered, it was stage 4 and intertwined in her spinal cord and brain stem resulting in her death just 13 months after her diagnosis. This is my niece and I was given permission by her parents to use this story for this paper.
Parental Authority Vs. Child Autonomy Ariana is my 9 year old niece who was diagnosed with Glioblastoma Multiforme at the age of 8. For the first six months of her diagnosis and treatment, she was kept in the loop one hundred percent. Meaning she was told what tests were going to be done, what the treatments would be, how they were going to be performed and when. Ethical Dilemma At this point in time, the treatments were not helping, and tumors were now popping up in several other areas of her brain.
It was at this time that her parents decided that only specific information would be shared with Ariana. It had gotten to a point where the doctor(s) would just look over to mom and know by a look what she/he should or shouldn’t say in front of Ariana. At what age do children develop the ability to make autonomous decisions for themselves?
This has been a question that was asked amongst family members many times during these thirteen months. Was Ariana too young to know what was going on? Was she too young to make the decisions on her own health care? Was the course of treatment to be decided only by her parents or should it be done by the three of them or should it be based on, “it is Ariana’s body, she should decide what she wants to do?” At what age do children develop the ability to make autonomous decisions for themselves? “For the most part the parent-doctor-child/adolescent triangle sides are essentially in agreement, but this may not be true in some cases, causing physicians to face problems attempting to determine their professional duties,“ (Alireza Parsapoor, 2014. In this case, Ariana was quite young, only 8 years old at the beginning of treatment but 9 by the time the lack of communication of her diagnosis began. However, this was the beginning of the i-pad era, where the internet was alive and full of information that a child could look up. She was a smart girl and when mom would go get a bite to eat or take a call, she would be looking into her disease process, diagnoses and outcomes. She ultimately knew that the recent lack of communication meant that things were getting worse and not better. It was around this time, approximately 9 months after her diagnosis, that she changed too.
She became withdrawn. Was this surprising? Not at all, as she was dying, and she now knew it. She would fight more with her mom who was pretty much there day and night. She would get snippy with her dad and other family members as well. It all makes sense now but then, we did not know what was happening, we didn’t know she knew what was happening. We all tried to keep things as upbeat as we could when all she wanted from any of us was honesty about the entire situation. Something none of gave her at this point, not mom, dad, the rest of the family, not even the nurses and doctors. It was never taken into consideration that yes, she was 9 years old, but she was also well educated on her disease process and its consequences.
Her age was nothing but a number, she probably knew just as much if not more than her parents, as to what was happening to her and what her future held for her. Should Ariana have been given all information pertaining to her prognosis as she had been in the past? After her passing, the family was together a lot and there were many discussions about how things were handled. Now it was time for should we have, why didn’t we, but what if we?
There were so many unanswered questions. Her parents were questioning if they were correct in withholding the information as she was so young, and they did not want to burden her with the news and lose her faster. But then they also questioned if they made the decisions they made for themselves or for her? Were they being selfish and trying to make the most of every possible second with their first born child or were they protecting her from the inevitable? They are not the only parents asking these questions. It is an ethical dilemma there really is no correct answer to. At around month 11 of her battle against the cancer, Ariana spoke up to her parents. She knew that she did not have much time left and she decided to make that known to her family. Little did anyone know but hile mom was out of the room, she overheard an attending doctor call the hospice doctor and discuss her case when he thought she was sleeping. She later asked one of her nurses, “Am I dying soon?”
The nurse was caught off guard, she took her hand and just looked at her, without speaking one word. It was that look of love and compassion along with the gentle rub of her hand that gave her the confirmation to what she already suspected. The end was near.
Now, how would she let her parents know she knew what was happening. She was but 9 but she was completely aware and knew what her next step would be. Was she too young to decide her fate? Was this a decision her parents and doctors would make alone or would they listen to her and abide by her wishes? She went for it, took authority and with the help of her nurse advocating for her, they spoke to her parents about the next few months ahead.
“Provision 3 The nurse promotes, advocates for, and protects the rights, health, and safety of the patient,” (Fowler, 2015). Her nurse did just that by sitting with her while she spoke to her parents. She didn’t even speak, she was just there if the parents questioned Ariana’s decisions. Who is the proper decision maker in Ariana’s case? We would soon come to find out, there was no real answer to this question. After Ariana and her nurse sat down with her parents, they agreed to allow Ariana to make the decision as to whether they would continue to prolong the inevitable or go home on hospice and spend the rest of her time home and with family. She chose to go home, on pain management and spend her time left with her little brother, mom and dad and whomever else wanted to come over and see her. In July of 2008, Ariana told her parents she wanted to have a birthday party.
This caught everyone by surprise as her birthday was not until December. They agreed, and we had the biggest party we could think of. Family from Florida and Puerto Rico came as well as those here in New Jersey. It was then we all knew what was happening, we knew it would not be long before we lost her, and she knew it. She asked for her party now knowing she was not going to make it to December. Just days after her party, Ariana’s parents sat together at her bedside and asked the hardest question they may ever ask anyone in their life, “Nana, do you know what is happening?
Do you know you are going to see Abuelo and Titi Donna soon?” Ariana responded, “I have known for a while that I was dying, I just didn’t know how to tell you, so I pretended I didn’t know to make you guys happier.” When is the right time to have the end of life talk with a child? Well, there really may not ever be a correct time, and many people believe it is better not to speak of it. In this case, once this line of communication was established it was like a weight had been lifted on both sides. It also signaled the waiting game because with each passing day, Ariana’s heath rapidly declined.
Within 2 weeks of the birthday celebration, Ariana looked at her parents and said, “I am tired, tired of being in pain, tired of the sadness. She asked for more pain meds and slowly slipped away. It was with chain stokes respirations becoming more prevalent that she waited for mom to step outside for a cigarette, that she looked at her father and took her last breath. This past week Ariana would have turned 19 and not a day goes by that she isn’t remembered for many reasons.
They then questioned if they had made the correct decision. In the end, there is no right or wrong, there is no one person who knows better than the other. They did what they felt she wanted and as much as it hurt to let her go, they knew she was not longer suffering, no longer in pain. Now it was their turn to mourn her loss and deal with their own pain. Ten years later, that pain hasn’t changed, and they question the “why’s” of it all to this day.