As a pediatric nurse, I often spend my days going from one home to another seeing patients, some sicker than others, advising parents who are either managing their child’s care with great ease (it appears) or floundering in feelings of overwhelming agony. I spend my time teaching, reviewing, and assuring parents that they are doing a great job, and I correct any errors in care as smoothly as possible.
At the end of the day, I will sometimes get a call from one of these parents. The worst is happening, and although we knew it was coming, it doesn’t make it any easier. The parents need support as their child spends his or her last hours on earth in a living room now outfitted with a hospital bed, suction machine, oxygen, monitors, and medications. Siblings may be nearby waiting, crying, and feeling powerless to help, or perhaps not completely understanding the moment at hand, and yet sensing that something major is about to happen.
Providing care, support, and ensuring the patient is as pain free as possible is our goal in Palliative Care. This patient (like many other adults and children with terminal conditions) is spending their last days at home — with the ones he or she loves. Planning and counseling are key to transitioning from one stage of life to another. VNSNY Maternal Newborn and Pediatric Program currently offers Pediatric Palliative Care services in Brooklyn and will be expanding to other regions in 2012. Families and children need community support and access to comfortable care. And for some families, being able to say good-bye at home means they provided their child with love, care, and compassion, free of extreme measures and painful procedures.
Thank you for this very important perspective. When I keep vigil with elderly patients it is with the supposition that each has led a life well lived. There is no doubt that children in this situation, and their parents and siblings, have been denied that opportunity. Dr. Ira Byock’s book “Dying Well: Peace and Possibilities at the End of Life” is a series of meditations on how to make the end at home as peaceful as possible, even for the youngest and most vulnerable.