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In the mid-1990s, professionals and laypeople began to openly discuss the need for an evidence base or best practice model related to neonatal palliative care. During that time, researchers in the field (Calhoun, Hoeldtke, Hinson, & Judge, 1997, Catlin, 1999; Catlin & Carter, 2000, 2002; Carter & Bhatia, 2001; Leuthner & Pierrucci, 2001) began thoughtful reflection, discourse, and scholarly publication about this subject. At the same time, researchers in the United States and abroad (Armentrout, 1986; Brinchmann, 2001; Hulac, 2001; Penticuff, 1988) were communicating about improved models of care for families of dying infants. To disseminate this knowledge to practitioners, the Gundersen Lutheran Hospital Resolve, through the Sharing Bereavement Program (Gundersen Lutheran Medical Foundation, 2013), was established by Rana Limbo and Sarah Wheeler to educate caregivers in how to professionally respond to the dying infant and family.

These events stimulated researchers to question different aspects of perinatal hospice care, including the ethics involved in neonatal end of life as described by Pinch in 2002. Also in 2002, the Pregnancy Loss and Infant Death Alliance (PLIDA, 2012) was established to provide leadership and guidance for professionals and parents, and Catlin and Carter (2002) published a neonatal end-of-life palliative care protocol that was subsequently circulated worldwide. A few years later, nurse leaders (Gale & Brooks, 2006; Sumner, 2003) created care paths that applied palliative care principles to clinical practice.

Parents played major roles in this movement: they wanted different and better care for their dying infants, they wanted their voices to be heard, and they wanted to be told the truth about long-term infant outcomes. When parents decided that they were ready to withdraw therapy, they wanted partners and not adversaries. As a result, parents such as Robert and Peggy Stinson (1983), Helen Harrison (1993), and Marianne Rogoff (1995) wrote books and articles demanding a better method of treatment for their dying infants.

In the 2000s, practitioners began to collaborate and think about the ethical problems in saving extremely preterm newborns and interest in palliative care for infants with life-limiting conditions increased. In 2004, Carter and Levetown published the groundbreaking Palliative Care for Infants, Children, and Adolescents: A Practical Handbook, now in its second edition (2011). International researchers from Portugal and Australia (Aleimeida, Brites, & Mendes, 2012; Kain, 2006) initiated neonatal palliative care movements in their respective countries. In 2007, researchers established federally funded studies and doctoral education programs on complexities with premature infants in North Carolina (Mears, Peluso, Buschbach, Bidegain, & Brandon, 2007). In 2008, Armigo created an education program on viability to help parents make decisions about preterm delivery. In 2009, the End of Life Nursing Education Consortium (ELNEC), a project sponsored by the American Association of Colleges of Nursing, established a section on Neonatal and Perinatal Palliative Training. Researchers provided methods to address nurses’ moral distress in neonatal end-of-life care (Catlin et al., 2008; Epstein & Delgado, 2010). In 2009, The National Institute of Nursing Research funded a multiyear study on parental decision making in the neonatal intensive care unit (Kavanaugh, 2009).

Currently, these and other researchers continue their commitment to the field by publishing articles that influence the neonatal end-of-life care that is provided in our country and around the world. To add to this discourse, the purpose of this In Focus series is to enhance nursing science by developing the concept of antenatal/perinatal palliative care. The authors in this series build on the palliative care framework for the often unexpected prematurity, illness or death of an infant in the newborn period and add direction with which to help parents who are told antenatally that their fetuses have fatal conditions. The discussion regarding the choice to carry an infant to term, to deliver, and to have access to palliative care in the hospital, hospice, or home is a new concept described in the series.

In the first article, Wool reports the state of the science since 1995 on the concept of palliative care for parents who opt to continue a pregnancy after receiving a life-limiting fetal diagnosis. Wool identifies and compares common themes within the research that met the inclusion criteria using the National Consensus Project for Quality Palliative Care (NCP) core elements. She reviewed relevant articles and concluded that more research is needed to learn how best to support families in need of antenatal and perinatal hospice care. Nurses can lead research and implement evidence-based practice grounded on this review and other studies.

In the second article, Vesely and Beach describe the concept of a free-standing, inpatient, neonatal hospice, which began in Canada and the United Kingdom and has been adopted in the United States at the George Mark Children's House, San Leandro, California. In 2004, this state-of-art facility began serving families with children who have a serious medical illness and who are seeking family-centered medical care that emphasizes quality of life in a compassionate, supportive atmosphere. Newborns with life-limiting conditions are admitted with their families, and the transition from neonatal intensive care to this neonatal hospice is described. The authors demonstrate that with proper training and dedication, nurses along with the entire health care team can provide a dignified and loving death for the infant with a fatal diagnosis.

In the final article, English and Hessler describe a best practice model of advance care birth planning in which prenatal and palliative care teams offer guidance and support to parents preparing for their infants’ birth. This model facilitates decision making and consensus building resulting in a birth plan that reflects parental values and ethical guidelines and focuses on the specific needs of the newborn.

In closing, I am honored to work with these colleagues to bring antenatal/perinatal hospice care into focus. Along with the Resolve through Sharing Bereavement Program and the End of Life Nursing Education Program for Perinatal and Neonatal Care, this series provides a framework for caring for an infant with a life-limiting condition. I believe that the parents mentioned above would be proud to know that we as professionals listened to them, and that in the future, parents of infants with life limiting conditions will receive the support that they so strongly desire.

REFERENCES

  1. Top of page
  2. REFERENCES
  3. Biography
  • Almeida, P., Bretes, M., & Mandes, J. (2012). Work package 1. Institute Bioethical, University Catholic Portuguese, Vulnerabilities Program.
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  • Calhoun, B. C., Hoeldtke, N. J., Hinson, R. M., & Judge, K. M. (1997). Perinatal hospice: Should all centers have this service? Neonatal Network, 16(6), 101102.
  • Carter, B., & Bhatia, J. (2001). Comfort/palliative care guidelines for neonatal practice: Development and implementation in an academic medical center. Journal of Perinatology, 21, 279283.
  • Carter, B. S., Levetown, M., & Friebert, S. E. (2011). Palliative care for infants, children, and adolescents: A practical handbook (2nd ed.). Baltimore, MD: Johns Hopkins Press.
  • Catlin, A. J. (1999). Physicians neonatal resuscitation of extremely low birth weight preterm infants. Image, 31, 269275.
  • Catlin, A. J., & Carter, B. S. (2000). Continuing the dialogue: Resuscitation of marginally viable neonates. Cambridge Quarterly of Healthcare Ethics, 9(3), 400403.
  • Catlin, A. J., & Carter, B. S. (2002). Creation of a neonatal end of life palliative care protocol. Journal of Perinatology, 22(3), 184195.
  • Catlin, A. J., Armigo, C., Volat, D., Vale, E., Hadley, M. A., Gong, W., … Anderson, K. (2008). Conscientious objection: A possible nursing response to care at the end of life. Neonatal Network, 27(2), 101108.
  • Epstein, E. G., & Delgado, S. (2010). Understanding and addressing moral distress. Online Journal of Issues in Nursing, 15(3), 1.
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  • Gundersen Lutheran Medical Foundation. (2013). Our mission. Retrieved from http://www.gundluth.org/foundation/mission
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  • Hulac, P. (2001). Creation and use of You are Not Alone, a video for parents facing difficult decisions. Journal of Clinical Ethics, 12(3), 251253.
  • Kain, V. J. (2006). Palliative care delivery in the NICU: What barriers do neonatal nurses face? Neonatal Network, 25(6), 387392.
  • Kavanaugh, K. (2009). Life support decisions for extremely premature infants. Bethesda, MD: National Institutes of Health.
  • Leuthner, S. R., & Pierrucci, R. (2001). Experience with neonatal palliative care consultation at the Medical College of Wisconsin-Children's Hospital of Wisconsin. Journal of Palliative Medicine, 4(1), 3947.
  • Mears, S., Peluso, M., Buschbach, S., Bidegain, M., & Brandon, D. H. (2007). Development of a neonatal program of palliative care: From needs assessment to implementation. Paper presented at National Association of Neonatal Nurses 23rd Annual Conference Proceedings, San Diego, CA.
  • Penticuff, J. H. (1988). Neonatal intensive care: Parental prerogatives. Journal of Perinatal & Neonatal Nursing, 1(3), 7786.
  • Pinch, W. E. (2002). When the bough breaks: Parental perceptions of ethical decision-making in the NICU. Lanham, MD: University Press of America.
  • Pregnancy Loss and Infant Death Alliance. (2012). Pregnancy and infant death organizational mission. Retrieved from http://www.plida.org/.about/
  • Rogoff, M. (1995). Sylvie's life. San Tan Valley, AZ: Zenobia Press.
  • Stinson, R., & Stinson, P. (1983). The long dying of baby Andrew. Boston, MA: Little Brown.
  • Sumner, L. H. (2003). Lighting the way: Improving the way children die in America. Caring, 22(5), 1418.

Biography

  1. Top of page
  2. REFERENCES
  3. Biography
  • Anita Catlin, DSC, FNP, FAAN, is an ethics and research consultant, Pope Valley, CA.