Neonatal Hospice Nursing, Part One: Outpatient
Jayne Taylor, RN
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.
Part Two features Debra Bolton, RNC, CLE, a labor & delivery nurse, who works inpatient. Click here for part two.
Working Nurse: How did you get into this line of nursing?
Jayne Taylor, RN: I was a neonatal intensive care nurse for 13 years, during which time I took care of many dying newborns. These babies were brought to the NICU, separated from their mothers and had little bonding time with any loving family members for the short life that they had. I love the concept of the perinatal hospice and know from those experiences what a necessary program it is. I am thankful to be a part of it and to be able to help these families during this difficult time.
Where do you currently work?
I am with the Perin atal Comfort Care (PCC) program at St Joseph’s Hospital in Orange, CA.
What role do you play on the PCC team?
I work for St Joseph’s Hospice and get involved with the families as soon as they come on service. I usually go out to the couple’s home and provide whatever support and education that is needed, assess their specific needs and help them put together a birthing plan. This plan is specific to their case, personal wishes and desires for how things are going to go at the birth and during the baby’s life and death.I also attend the parent conferences, where we meet with the entire team to go over the birthing plan, clarify their needs and answer any questions they may have regarding what to expect.
So what do your days look like? Describe your typical activities in this nursing position.
The St. Joseph PCC Program Coordinator calls me after she admits a family to service. We review the status and identified needs of the family. I make an appointment with the family and usually visit them at their home. During this time, we discuss the baby’s diagnosis and give them some idea about what they can expect at the time of the birth. They are typically very apprehensive and have a lot of questions. I answer what I can, and refer them or perform further research regarding those questions I do not have answers to.
During these home visits, I help them create the birthing plan, which gives them the opportunity to put in writing what they do and do not want for their baby. This birthing plan then becomes part of their hospital record so that when they get to the hospital to deliver the baby, the staff there is aware of all their wishes. After the visit, I update the PCC Program Coordinator and later provide input at the PCC Conference with the inpatient team.
How do you work as a team?
This program embraces a multidisciplinary team approach to family centered care. The outpatient hospice team communicates with the inpatient hospital team on a regular basis to inform them of changes in the birthing plan or status of the family. When the mother is admitted, the inpatient team communicates with the outpatient team regarding the status of the labor and the condition of the baby. As a team, we talk frequently with each other and inform each other of the status of the families.
Who else is on the outpatient portion of this team?
Myself, the program coordinator, the hospice social worker, a volunteer hospice nurse, the hospice chaplain, and a hospice music therapist.
Describe the other members of the inpatient side of this hospice team.
In the inpatient setting, our multidisciplinary team consists of the PCC Medical Director (who is an OB/perinataologist), the patient’s obstetrician, a neonatologist, an anesthesiologist, the hospital social worker, a case management representative, the hospital chaplain, Debra Bolton as the L&D representative, the L&D manager, the mother-baby unit manager, and other specialists as needed.
What do you enjoy most about your work?
What I enjoy most is knowing that I can be of some help to these families. They are faced with one of the most difficult situations that anyone can face in their lifetime and to be able to make that a little easier for them is very rewarding. I also love it when we get letters thanking us and everyone in our program for what we do.
Is there anything you find a challenge?
It's a very sad and heavy time for these families and it is very difficult to have to watch them go through it and not be able to make it better.
Any advice you’d like to share with hospice nurses and nurses in general?
The advice that I would give for anyone dealing with people in this or any other critical or end of life experience is to be empathetic, caring and quiet. I think that listening is the most important and helpful thing that we do. Grief has many stages and is handled by everyone differently. It is important to meet the clients where they are and allow them to express feelings and needs. We can help and give resources whenever possible, but just to be that supportive ear that clients need is extremely comforting and helpful to them.
RTS (Resolve Through Sharing) Program, www.bereavementservices.org
Perinatal Hospices, www.perinatalhospice.org/Perinatal_hospices.html
Pregnancy Loss and Infant Death Alliance, www.plida.org
National Hospice and Palliative Care Organization, www.nhpco.org