Not the End We Planned For

In 1997, my four–year–old daughter was diagnosed with a high–risk medulablastoma. She underwent the current treatment program at that time. She suffered multiple complications from the treatment and developed seizures, which caused her to lose her sight and 80% of her hearing. These all contributed to her manifesting many behavioral issues, making her a danger to herself and others. Also during this time, she developed large amounts of brain atrophy from the maximum radiation dose she had been given. In August of 2010, Emily was still deteriorating, her seizures were uncontrollable, and her quality of life was extremely poor. A meeting to discuss how to care for my child if an acute crisis presented was held. The meeting included her parents, oncologist, endocrinologist, pediatric neurologist, social worker and the head of medical ethics. We discussed what course of action would be best for her nothing could be done to reverse her condition or prevent further deterioration. A POLST is a physician order for life sustaining treatment and is appropriate if the doctor feel that the patient has a good chance of death in the next year. The purpose of this document is to have a plan in place in case the patient has a life threatening crises. We chose to put a POLST in place with specific instructions not to intubate. This was a hard decision to make for a parent, but we all felt it was the best choice for her.

A few months after the POLST was entered, in November, 2010, I came home from the store and my daughter’s caregivers told me she had complained of a headache different from her usual headaches. They gave her Tylenol with codeine and she went to bed about 4 p.m. When I checked her later she seemed fi ne, merely sleeping her headache off. We decided to let her sleep some more. Around 8 p.m the caregivers came and got me because they could not wake her up to go to the bathroom, which was her normal routine. I immediately went to try and wake her up but could not. I ran my thumb up the bottom of her foot and there was no reflex response. I yelled for her father that we needed to immediately go to the hospital.

We took her to the ER at the local hospital that treated her close to the house. We told them we did know what was happening with her but that there was a POLST in place in her chart. They started lines, a nasogastric tube, and sent her for a CT, which showed massive amounts of blood in her brain. I repeated again to the ER staff and physician that there was a POLST in place but no one acknowledged my statement. I asked for a different physician, one that would respect the POLST, and was told there was no one else nor was there a neurosurgeon available. The attending physician insisted she be intubated in order to be transferred to a partner hospital (more than 20 minutes away) where there was a neurosurgeon on duty. I asked him to please call her oncologist at which point he yelled at me that, “he was not calling anyone else and that she needed to be intubated and transferred to the other hospital.” By this time, four hours had passed and I knew she had not gotten any medication for pain, so I told the physician to go ahead and transfer her since I knew the hospital we were at would not admit her for palliative care. She was then intubated, in violation of the POLST, and transferred to the other hospital where the neurosurgeon there told us what we already feared: That she had experienced a massive bleed in her brain. We requested she be extubated and be given palliative care to make her comfortable until she passed away.

It is tragic that our daughter’s last hours involved aggressive medical treatment. As parents we hoped to avoid any additional suffering for our child, we did everything we knew to do to insure aggressive...