A Conversation with Janet Parkosewich, DNSc, RN, CCRN, FAHA:
Premature Life Transitions program at Yale-New Haven Hospital
Janet Parkosewich is the principal investigator for the Premature Life Transitions project, which supports families in the Yale-New Haven Hospital’s Newborn Special Care Unit through the transition from curative care to palliative care, infant demise, and bereavement. Janet describes how this project has not only improved care for patients and families, but has created an opportunity for two dedicated staff nurses, Julia Bishop-Hahlo, RN, BSN and Laurie Jonason, RN, BSNC, to translate their passion into leadership and action.
Your project relates to an intensely emotional experience, not only for families, but for staff. How do you support staff members in learning not only how to support families, but how to care for themselves while providing palliative care for an infant and coping with infant demise?
As part of this project, we asked staff to complete an end of life bereavement care survey. We discovered that many of the staff members did not feel comfortable with the responsibility of caring for a dying infant and supporting families through that process. We are building a select cadre of Transitions mentor nurses who can support other staff through this experience. We are building staff skills, providing training, and implementing a step by step guide and checklist that walks staff through every step of the process. In general, hospitals don’t do a lot to support staff through these events, but we know that this is a loss for staff too. There is sometimes a perception that when an infant’s life support system is withdrawn, the nurse can take another baby right away because “you’re not doing anything.” The nurses need time to care for the family and to grieve themselves. Many times they have cared for these babies for weeks or months and have gotten to know the baby and the family well. We need to support them.
What have you learned from the parents involved in this program?
It is important to make sure we focus on what families themselves say they want and not what we think they need. We are working closely with the Newborn Special Care Unit Aadvisory Committee and the parents on that committee have validated that this project is the right thing to do. The parents on the committee represent a variety of perspectives and experiences, from infants that have died to infants that have been in special care, gone home and are thriving. For all families, it is an emotionally charged situation. What we say and do has a lasting impact. One of the parents expressed it this way, “Do clinicians realize that we will never forget their names, their faces, and what they said to us about our dying child?” We have used these words and other parent perspectives to reinforce the importance of the program to staff. Less than humane interactions, such as “kidneys down, game over” are not acceptable. Families will remember those words forever. We also have learned how to have different types of conversations. For example, in family meetings, we ask about the family’s goals instead of just giving the family information. This dialogue brings everyone onto the same team.
Many organizations are interested in starting their own Always Events projects and could learn from your experience. What would you say are the secrets to your success?
There are several factors that have been essential to our success:
- Administrative Support – Everyone has recognized the value of the project and warmly welcomed the team.
- Nurse Champions – Laurie and Julia are driven and don’t take “no” for an answer.
- A Shared Vision and Common Purpose – The department heads of all involved departments were able to garner support for the project across the staff.
- Data – Both qualitative and quantitative metrics demonstrated we had lots of room for improvement.
The role of frontline leaders can’t be underestimated. For families to receive the level of care we want, we have to give staff nurses these skills and experiences. Often projects such as this involve nurse educators, but this project is being run by frontline staff. The project has helped Julia and Laurie to flourish as leaders. They are doing something they are passionate about and are being given dedicated time in the schedule to do it. The Magnet program requires the involvement of frontline staff in improvement work and this project demonstrates the powerful impact that frontline nurses can have.
We are finishing our behavioral observations and will soon start with our educational intervention. The Yale-New Haven Hospital pediatric intensive care unit will be joining the program and we also are expanding to other hospitals in the health system. I am grateful to the Picker Institute for helping me realize my dreams. This program has enriched my life.