Nightingale Notes

“Far and away the best prize that life offers is the chance to work hard at work worth doing.” -Theodore Roosevelt

As a pediatric palliative care nurse,  I work hard at work worth doing, caring for little ones fighting big battles and those who love them. There is a bioethical compass integral to the practice of nursing, and nowhere is this more apparent than when caring for children and families living in the shadow of life-limiting illness.  In the complex milieu of health care today, nurses are often faced with bio-ethically complex clinical situations that challenge and call into question our own morals and beliefs.  Steadfast compassion and our shared humanity serve as the underlying moral compass to guide our paths through suffering and moral distress. My work in pediatric palliative care has led me to one of the deeper truths in health care…

“We can’t always cure, but we can always care.”

Many clinicians work within the “fix it” paradigm of modern medicine which may lead to feelings of helplessness when we cannot mend the broken pieces or gentle the journey of serious illness.  Nurses on the frontlines act as advocate and voice for the sick and vulnerable in their care, and thus are best positioned to raise bioethical questions, recognize clinical concerns that lead to feelings of moral distress in their colleagues, and lift each other up.   

As the Palliative (Supportive) Care RN Coordinator in our large tertiary care center for many years, I am witness to the joys and challenges that come with caring for seriously ill children and families. This work humbles us.  The science and technology we have at our fingertips allows us to keep small failing bodies alive far beyond what is natural. There are oscillators and LVADs, ECMO and whole genome sequencing.  There is almost always an experimental chemotherapeutic agent on the horizon, another surgery, or new procedure to endure.  When the brutality of illness outstrips the powers of medical technology, part of the fallout lands squarely on front-line clinicians. (Back, et al 2015)   We push the limits of technology, and nurses at the bedside experience suffering in vicarious and almost palpable ways.  How do we best advocate for the smallest and most vulnerable entrusted to our care?  How do we find our voice and preserve our integrity, and then share our lived experience and inner wisdom with nurses entering our profession?  How do we bear the unbearable and come back the next day to do it all over again?

I have seen moral distress and nursing heartache up close and personally.  I have been present in the aftermath of many an unsuccessful code, a powerful witness to feelings of failure, and could we have done more/should we have done less? I have debriefed those physically and emotionally exhausted nurses, drained and empty, acknowledging their trauma, offering a kind ear to listen and a shoulder upon which to lean. I have helped a sad and tearful nurse shroud a small body and leave it in the cold harshness of the morgue more times than I can count.  I long to fix it for them, to offer magical words of comfort and solace, but know they do not exist.  I offer my presence.  I remind them that what we do matters, it shapes our humanity and makes us who we are.  We are grit and grace.  Dr. Jean Watson teaches us as nursing professionals to BE the healing environment.  How can we create a safe, and dare I say, sacred space to share the blessings and burdens of this work?  

A commitment to enhance ethically-centered caring practices, strengthen our moral capacity, and nurture a healing environment ensures high quality care for each and every patient and family we serve, and safeguards the moral spaces necessary to grow the seeds of resilience for our colleagues, ourselves, and our profession. 

Thank you for knowing what you know, doing what you do, and being who you are!

“I am only one, but I am still one. I cannot do everything, but I can do something.” -Helen Keller