Wrapped in Their Arms

Next-of-Kin's Perceptions of How Hospital Nursing Staff Support Family Presence Before, During, and After the Death of a Loved One

Beverly Rosa Williams, PhD; Donna R. Lewis, MSN, GNP-BC; Kathryn L. Burgio, PhD; Patricia S. Goode, MD

Disclosures

Journal of Hospice and Palliative Nursing. 2012;14(8):541-550. 

In This Article

Abstract and Introduction

Abstract

Family presence is a vital component of quality end-of-life (EOL) care. We conducted face-to-face, in-depth interviews with next-of-kin of deceased veterans to explore perceptions of how hospital nursing staff supported and facilitated family presence during the actively dying phase, at the time of death, and immediately following the patient's death. We used content analysis to examine respondents' accounts of the role of nursing staff in fostering and sustaining family presence in the hospital setting. We provide exemplary quotes to contextualize nursing staff behaviors that encouraged, supported, and guided families, enabling them to be present and to function adaptively before, during, and after the loved one's death. In particular, we focus on nursing behaviors that were responsive to family members' needs for information, privacy, intimacy, physical comfort, and emotional reassurance. Nurses' effectiveness in optimizing family support required clinical competency in recognizing the actively dying phase of life and engaging in behaviors that facilitated the delivery EOL care, with thoughtful attention to family needs.

Introduction

Family presence at the death of a loved one is a marker of the quality of end-of-life (EOL) care.[1] However, family members may not be adequately prepared to manage the stress and distress associated with witnessing the decline and death of a loved one in the hospital setting. Nurses skilled in the art and science of palliative care are uniquely situated to provide compassionate care, comforting presence, and reassuring counsel to patients and family members throughout the dying process.[2]

The emergence of palliative care as the dominant model of EOL care[3] has highlighted the importance of fostering key nursing competencies for the holistic care of dying patients and the support of family during the transition to the end of life.[4] In 1998, the American Association of Colleges of Nursing (AACN) articulated nursing competencies needed for the provision of quality care to patients and families before, during, and after a patient's death.[5] Today, through the End-of-Life Nursing Education Consortium (ELNEC), the AACN and its partners coordinate the development and dissemination of the national ELNEC curriculum to enhance and expand the delivery of palliative care.[6]

In their publication Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care, the AACN delineated 16 behavioral competencies that nurses should possess, including the ability to (1) "communicate effectively and compassionately with the patient, family and health care team members about end-of-life issues"; (2) "assist the patient, family, colleagues, and one's self to cope with suffering, grief, loss and bereavement in end-of-life care"; (3) "assess and treat multiple dimensions, including physical, psychological, social and spiritual needs, to improve quality at the end of life"; and (4) "demonstrate respect for the patient's views and wishes during end of life care."[5]

The primary purpose of this article was to demonstrate the integration of the EOL nursing care standards in clinical practice and to validate the meaningfulness of these nursing interventions for families of deceased veterans. By showing the relevance of certain qualities of EOL nursing care to family members, we hope to illustrate the alignment of nursing guidelines with family needs. In particular, we focus on nursing behaviors that facilitate and support family presence with the patient and resonate with family needs for information, privacy, intimacy, physical comfort, emotional support, and spiritual reassurance in the final days and hours of the patient's life. In so doing, we hope to inform the discourse on EOL nursing care in the hospital setting and expand awareness of the type of nursing behaviors that provide comfort and consolation to family members in the face of a loved one's death. While there is a great deal of literature on what family members need in the EOL setting, there is little work characterizing the delivery of supportive nursing services to loved ones of dying hospitalized patients or describing contextualized elements that shape family members' perceptions of the efficacy of such care in facilitating family presence and well-being.

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