End-of-life experiences of parents, nurses and physicians in the Newborn Intensive Care Unit

Epstein, Elizabeth Gingell, School of Nursing, University of Virginia
Hamric, Ann B., School of Nursing, University of Virginia
Hollen, Patricia J., School of Nursing, University of Virginia
Lancaster, Barbara Jeanette, School of Nursing, University of Virginia
Steeves, Richard H., School of Nursing, University of Virginia

Purpose: Infant death in the Newborn Intensive Care Unit (NICU) is an experience that becomes permanently embedded within the lives of parents. However, little is known about the impact of infant death upon healthcare providers. The purpose of this study was to gain a richer understanding of the end-of-life period (EOLP) in the NICU through analysis of the lived experiences of parents, nurses and physicians.

Methods: Hermeneutic phenomenology was the research method. Data from interviews, demographic questionnaires and medical records were collected. Healthcare providers were interviewed within 6 weeks after the death. Parents were interviewed 10-12 weeks after the death. The data were analyzed by group and by infant. Categories and themes were found using procedures described by Lincoln and Guba (1985) and Cohen, Kahn and Steeves (2000). Results: Twenty-one infants died during the study period. Information was obtained on all deaths from one or more groups of respondents. Twenty-one nurses, 11 physicians and 8 parents of 6 infants were interviewed. Six categories of themes (relationships, communication, decision making, creating the best possible experience, EOLP endpoints, and unique experiences) were found. Themes within these categories included: helpfulness, trust, relationship quality, explaining, preparing, identifying decision makers, gaining consensus, providing options, holding the infant, healthcare provider presence, controlling the environment, creating memories, parents' struggle for meaning, readiness, emotional distancing and obtaining an autopsy. In addition, moral obligations of healthcare providers were identified and were primarily parent-focused obligations (i.e., honesty, creating memories).

Discussion: Healthcare provider data indicated that creating a peaceful experience for parents was highly important. The EOLP was composed of two phases: a preparation phase, whereby healthcare providers provided options to parents regarding the withdrawal process and prepared parents for the dying process, and a withdrawal phase, during which healthcare provider presence, holding the infant and creating a peaceful environment were key features. A decision making phase preceded the EOLP which was a significant theme in healthcare providers' experiences. Finally, ethics, specifically a balance of care based ethics and principlism, was present both in decision making and the EOLP. Additionally, moral distress was also present among healthcare providers, especially nurse participants. For Aliyah Lael, whose death has meaning.

Note: Abstract extracted from PDF file via OCR.

PHD (Doctor of Philosophy)
Parents, Nurses, Physicians, Terminal Care, Life Change Events, Intensive Care Units, Neonatal, Communication, Death, Physician-Patient Relations, Nurse-Patient Relations

Digitization of this thesis was made possible by a generous grant from the Jefferson Trust, 2015.

Thesis originally deposited on 2016-03-14 in version 1.28 of Libra. This thesis was migrated to Libra2 on 2017-03-23 16:34:06.

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