Neonatal Hospice Nursing, Part Two: Inpatient
Debra Bolton, RNC, CLE
In this two-part column, we interview two nurses from the neonatal program at St Joseph's Hospice in Orange, CA. They collaborate together to provide a continuum of care from both inpatient and outpatient settings.
Part One features Jayne Taylor, RN, who works in an outpatient setting as a NICU nurse. Click here to go to part one.
Part Two features Debra Bolton, RNC, CLE, a labor & delivery nurse, who works Inpatient.
Working Nurse: How did you choose this nursing specialty?
Debra Bolton, RNC, CLE: I went into nursing with a desire to work in labor and delivery, having always been interested in the birth process. My thinking was that I’d be able to see lots of babies being born and that it would be a fun job. I never realized that I’d also have to work with dying babies and their parents. But this part of my job has become a part that I actually like to do. You can really make a difference for the families. It is so meaningful to be able to help them cope with an unexpected life event and try to make the experience as good as it possibly can be.
Where do you currently work?
I am employed by St. Joseph Hospital in Orange. I am a staff nurse currently working in labor and delivery, and am also part of the Perinatal Comfort Care Team.
How did this collaboration between outpatient and inpatient nurses first come about for St. Joseph?
We had an obstetrician and an L&D nurse awhile back who were interested in starting a perinatal hospice program. They saw a need and had a heart for patients, so they started the process of establishing such a program. About this same time, a hospice social worker from St. Joseph Hospice made contact with them. They met and formed a partnership between the outpatient hospice team and the inpatient hospital team. This collaboration was formed to meet the needs of parents expecting a baby who was going to die at or shortly after birth. It took about seven months to develop the program and accept our first patient. At this time, I was a clinical coordinator in L&D and was assigned to go to the meetings and the conferences and take notes and represent L&D in the interdisciplinary team.
What role do you play?
When I went back to staff nursing, I chose to keep this assignment as an “extra” part of my job. I attend once a month meetings and perinatal conferences, type up the notes and distribute them to those who need to know the plan of care. After the conferences, I take the family on a tour of the L&D Unit and Postpartum Unit. As an L&D Nurse, I provide the support and education to the family regarding what to expect during labor and delivery. In addition, I frequently take care of the patients when they come in to deliver and or visit them while they are here in the hospital. I’m also responsible for keeping track of clinical outcomes.
What does a typical day look like for you?
A typical workday for me is working as a staff nurse in L&D. I participate in the perinatal comfort care program because it is something I enjoy. I attend conferences, which requires me to come in on my day off or have someone cover my laboring patients if I am working. The conferences normally take about an hour. Following the conference, I give the family a tour of the labor and delivery and Mother-Baby units. I type up the conference notes and attach copies to our patient’s prenatal record. This is done to ensure that the family’s wishes are honored no matter who is providing the care. I am available for staff to call if they have any questions, and if I am scheduled to work, I provide care for these families. This continuity of care helps the family since I am a familiar face and am aware of their plan of care.
What do you enjoy most about this work?
I like being part of a core team that collaborates to provide family-centered palliative care. I also enjoy meeting the families and taking care of the mothers—trying to provide the best experience possible at a time when things are not what was expected. I want to help parents take advantage of each moment that is given to them. My goal is to give parents every opportunity to parent their child for as long as they can.
Is there anything you don’t enjoy about working in this specialty and as part of such a team?
The hardest part for me is my own work-life balance—coming in on my days off and always having these patients at the back of my mind. It can be challenging to take care of these patients—just trying to meet their emotional needs as well as care for a dying or dead infant. It is one of those things you do as a nurse in this role, but sometimes it gets to be overwhelming if you’re not careful to work for balance. I am lucky in that I do get to care for healthy moms, too. I don’t just take care of comfort care patients so I get a needed break at times.
What advice do you have for nurses who might like to explore this type of nursing?
I think that some of the desire to work with these types of families is an inherent trait in nurses who choose this specialty. I would suggest taking a course or courses on how to care for families experiencing a loss—i.e. a RTS (Resolve Through Sharing) course or something of that type. Then start talking with the other members in your institution about starting a perinatal hospice program. The goal is to keep the families together—not to separate the mothers from their babies. These babies with known lethal anomalies need whatever time they have to be loved by their families, and the parents should be encouraged to parent their babies for whatever amount of time they have. Additionally, the families need the support as they choose to carry their pregnancy to term and not abort.
When a Baby Dies, A Handbook for Healing and Helping, by Rana Limbo and Sara Wheeler
Empty Arms, by Shokee Ilse
Waiting for Birth and Death: Knowing Your Baby Will Not Survive
When Your Baby Dies—Planning a Special Goodbye
Both pamphlets can be ordered at www.bereavementservices.org