A Matter of Life (Support) or Death
After a couple of days off, I returned to work with a renewed sense of vigor. As usual, I arrived a few minutes early and checked my assignment. My eye then wandered to the patient board, and noticed that a couple of the regular names were missing. And I felt … relieved.
I’m a pediatric intensive care nurse. I work at a level one trauma center in southern California. With the latest technology, continuing research and up-to-the-minute trained staff, we treat some of the sickest children on the west coast … so it’s not all smiles and balloons. We manage children, who have temporary organ dysfunction, with medicines, machines and therapies that sustain or mimic the brain, heart, lungs, stomach/intestines, kidneys or skin until the organs recover or can be repaired. We all live for that moment when a patient is able to transfer to the floor, or go home altogether.
However, sometimes we get children in the PICU who are just dying. Not in the vague, kind-of sick, “we’re all closer to dying than we were when we were born” type of dying. No. It’s the incurable, unavoidable, painful, life-support dependent, severe brain or other major organ injury, and drugged type of dying. Trauma, incurable cancers or metabolic disorders, near drownings.
Sometimes a lot of what we do in the PICU is help the parents and family begin the process of grieving and letting go. Most families do a lot of praying, and there are a lot of friends from church and community who come to visit and say their goodbyes. It can be peaceful. We can withdraw life support, let the families hold their child during the last hours, give them privacy and peace in which to say their goodbyes, providing medicines that keep the child comfortable until the end.
However, sometimes the child is just so sick that the end is very traumatic … code blues, defibrillators, chest compressions, chaos, parents keening with grief. Sometimes the parents are just so overwhelmed that even the idea of a DNR (Do Not Resuscitate, in the event of a code blue) or withdrawal is untenable. In which case, as long as the child is not clinically brain dead, we continue to do everything we can to sustain the child’s life. Even if we don’t agree.
There’s generally a lot of praying in these cases as well. And it’s generally very determined. Parents at the bedside chanting. Loud group prayers. Demanding miracles. Which leads me to wonder, what ever happened to, “Thy will be done?” Most people believe in the concept of the soul, and that we will continue to exist after death, and that generally good people go to heaven. It’s what most people live for … to die as a good person. So, what is it that moves these parents to prolong their child’s suffering? Is it fear that there is no heaven? Fear of loneliness for themselves? A need to cling to the barest scraps of life? I don’t know, and I can’t really judge them. I just wonder, and hope to provide as much comfort as I can.
As for myself, I’ve already had the talk with my parents and siblings. None of us has any desire to live on machines in the event of a terminal illness with no reasonable hope of recovery, or a severe insult to the brain that would leave us mentally incapacitated. It’s just not worth it. Our philosophy? “I’ll see you on the other side.”
So, what are your thoughts on life support and death? Do you have an advanced directive that spells out how you would like to be cared for in case you are incapacitated? Have you talked with your family about how you would like to be treated if incapacitated? Keep in mind that advanced directives can generally be trumped by a living relative, so being in accord is important. Have you ever had to deal with making these decisions for a loved one? Do you have a will? Do you have insurance … health, AD&D, life, etc? I know it’s not the type of thing that people ever want to think about. But it’s literally a matter of life and death.