ICU Nurse Kristen McConnell: "I’ve often spoken with patients’ family members who seem to feel that an I.C.U. is a time-free holding zone; that intensive care functions as a pause button. Those conversations usually take place on the phone. It’s harder to believe in this pause button when you witness the constant poking and suctioning, the invasive examining and monitoring, the parade of medications and the contraptions necessary to deliver them, the lights and alarms, the coughing and grimacing and shuddering — or, in the less responsive, the bloating and stiffening or slackening and eventually the eerie dehumanization of both the patient and the caregiver. Thinking that intensive care can pause the march of time is a misunderstanding or a willful fantasy. There are always bargains to be made and discomforts to be faced in a place that is staving off death.
Time goes by quickly caring for patients like that young, scarily ill man. It goes by too quickly for nurses and doctors to eat or sit down or even go to the bathroom. It went by too quickly for the E.R. staff to clean the vomit off his face. Each minute matters, and it feels like a focused race. Caring for patients like the old man doesn’t feel like racing, it feels like waiting. In cases like his, time goes by slowly. But it definitely does not stop. These days are lived. For patients in the hospital surrounded by workers just as for patients at home or in hospice surrounded by people they love, these days at the end count.
Americans are increasingly aware that a good death rarely happens on its own; it needs to be negotiated and orchestrated. More people complete advance directives so their families are not left to make end-of-life decisions for them. But every day thousands of the patients toughing it out in intensive care are in fact in a purgatory maintained by family members who are either too intimidated by the complex medical situation to get involved (care providers who communicate poorly share the blame for this), or who don’t realize that this time is crucial. The cascade of responsibilities that occur when someone is dying has begun, even when the nurse on the telephone tells you that the patient is stable.
Families should realize that this time is the end of life, and they should pay attention to its quality just as they would if the patient were dying at home. That’s because although we can usually hold off death, we cannot pause time, and an extended stay in the I.C.U. is an ugly way to end a life. Unless the medical record contains an order limiting the measures that can be taken, originating from the patient, his next of kin or his designated proxy, interventions to keep him alive will continue indefinitely, regardless of the anticipated outcome in quality of life.
When a family member is in the I.C.U., it’s not enough to call. You need to drop what you’re doing and be at that person’s side, figuring out what is best for them. Doctors, nurses and technicians care about patients, but sometimes we cannot express our care by doing what we think is best for them. In the I.C.U., that is not our job. Our job is to preserve life. Often, when working with patients who have a quality of life it is impossible to imagine anyone wanting, we express our care by saying, “I’m sorry.”"
The I.C.U. Is Not a Pause Button - The New York Times
You have come to the right place, and we are glad you are here. This is a safe place to share stories of love and loss, devastating grief, exhausting care-giving, memorials, advanced directives, mourning, hope, and despair. We want to hear about about what you wish you had known or done differently, what you wish those around you had known or done differently, and what went right. We will never tell you to move on or find closure. "What cannot be said will be wept." Sappho
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.