Some children die in the hospital suddenly, while others slowly decline for weeks or months. If your child is dying slowly, you may have choices about where your child will spend her last days. There are no right or wrong choices. Much depends on the number of people available to provide care at home, and how comfortable they are doing so. Many parents ask their child where they prefer to be. Some like to be with the nurses in a hospital environment, while others want to stay at home with brothers, sisters, friends, and pets.
Parents, children, and staff need to talk honestly to decide on the appropriate place for the child, and then obtain the support (hospice, private nurses in the hospital, family members) needed to make the choice a comfortable reality. Remain flexible so that as the situation changes, options remain open.
Although we had been advised that it didn't look good for Greg, we were trying one last time to get him to transplant. He was sleeping quietly in his hospital bed. He had been complaining of severe head pain, and was on a low morphine drip. The afternoon nurse woke him to take vitals, and he chatted with her. He told me, "Mom, I'm going to go back to sleep, I love you." Two hours later the night nurse tried to wake him up to give him some medicine, and she couldn't wake him. They called the doctor in from his home, and he ordered a CAT scan. When the film came up to the floor, the doctor took me out in the hall and said, "He's not going to live through the night." He held up the film showing a massive cerebral infarction; Greg was bleeding into the brain. He quietly died less than an hour later. Family and staff were in total shock. Nobody expected it. But, looking back, Greg had decided that he had had enough, he was ready to go. I am grateful that he didn't die on a transplant floor in a strange city. We were able to call in friends and family, and we were surrounded and supported by the wonderful nurses whom we knew so intimately. I couldn't leave him until three nurses promised to stay with him and escort him to the morgue. They are still dear friends.
I felt bad for my daughter, because like any good child, she wanted permission, even to die. My husband had promised her that he would never give up. He kept on saying, "Fight. Fight. Don't give up, don't leave me. We'll do another transplant, we'll try different medicine. It's too early to give up." I looked at him and said, "She's not going anywhere until you tell her that it's okay." Then he told her, and she took her last breath. He still feels guilty to this day because of his promises. He just doesn't understand that it was time; that she needed to know that it was okay with us.
Parents of children who died in the hospital stressed the importance of clear communication. Parents need to be strong advocates for adequate pain control, and they need to tell the staff clearly how they would like things to be.
In most hospitals, patients are routinely resuscitated using CPR and electric shocks to the heart. This is called a "code." Parents need to discuss their wishes with the oncologist and ensure that a "Do Not Resuscitate" (DNR) order is put in the chart and on the childs door. Family members should understand that a DNR order does not mean "Do not care for my child." On the contrary, it allows the medical team to provide comfort measures, such as:
• Allowing the child to sleep during the night without interruptions for temperature and blood pressure.
• Providing adequate pain medications.
• Allowing family and friends open visitation without restrictions as to length and time of stay and number of people in the room.
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