The authors report no conflict of interest or relevant financial relationships.
In Focus Editorial
Perinatal Hospice Care during the Antepartum Period
Article first published online: 18 APR 2013
© 2013 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses
Journal of Obstetric, Gynecologic, & Neonatal Nursing
Volume 42, Issue 3, pages 369–371, May/June 2013
How to Cite
Catlin, A. (2013), Perinatal Hospice Care during the Antepartum Period. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42: 369–371. doi: 10.1111/1552-6909.12029
- Issue published online: 17 MAY 2013
- Article first published online: 18 APR 2013
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.
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