On being a new grandmother, a nurse, and a patient advocate
By Gail Douglas RN, MPH

Several years ago I wrote a column about being a patient advocate that has been widely circulated. I now wish to repeat my words but with a different twist. We all know that the healthcare system is in chaos… and real lives are caught in the middle. Witnessing these life events first hand enhances our insight and focuses our perspectives about what is right, good, humane and why we became nurses in the first place. On Aug. 1, I became a grandmother for the first time. With this experience came a renewed sense of activism and advocacy that has re-ignited and increased the fire in my belly. It was not an unusual experience, but one that many have undergone. Many of us think of birth as a normal experience; one that is natural and uncomplicated. It is one that we associate with much joy. What happens when there are problems? How do we reconcile our role as clinician, and grandmother? How do we teach others to advocate for information, inclusion in care decisions, and to help others see the parent’s role as the rightful defender of the baby’s rights? 

When my grandson was born early he had “early lung,” intubated and supported on IV’s and antibiotics. He spent five days in the NICU, a terrifying place for most. My kids received information on the fly. Remember that residents begin in July. This was Aug. 1, a time when resident physicians are proving themselves to their attendings, etc. They were technologically and functionally able to provide medical care, but they had a difficult time providing human care; regarding people and their feelings; their fears; their need to receive information. They talked around the family, only gave information out when questions were asked. 

But new moms and dads don’t even know the questions, while they suffer high anxiety…downright fear and night filled terrors…extubations…. reintubations… vent settings… medical procedures to rule out other sources of infection…usual activities for many NICU providers but not for new mothers and fathers. It wasn’t only my kids who had a difficult time, it was me too. I knew too much. How did I filter out information to give them what they needed; not to increase their terror but provide positive reassurance? How did I get my son to advocate strongly and aggressively for information? 

It was very hard. The nurses were great. They took care of me as well as they took care of the baby and the parents. Babies are not invincible…they are fragile and vulnerable…. but baby did rally… he is home now doing well. My son and daughter-in-law learned the questions. I was the teacher. I also taught the hardest class in my life. I could not be objective. I cried in private. I was direct and candid with the medical staff, insisted on daily updates with the parents, continuous discussion of the options and their inclusion in all decisions. I taught the NICU system that someone was watching and that is OK.

As the system continues to be fragmented, we must all be vigilant. We must all teach our patients and families to advocate for themselves if at all possible and if they cannot advocate for themselves, we as nurses must find our courage and help them ask the hard and difficult questions. For our loved ones as patients, I will reiterate that someone must sit by the bedside or bassinet; someone in the family must be assigned to confront the system to advocate on behalf of those who cannot advocate for themselves; someone must keep our system honest. As a new grandmother I know so much and I will continue this advocacy effort until I die. 

Gail Douglas is an associate professor of health services at Boston University School of Public Health.