Communication Between the Nurse and Family Caregiver in End-of-Life Care: A Review of the Literature

Susan E. Lowey, MS, RN, CHN, BC

Disclosures

Journal of Hospice and Palliative Nursing. 2008;10(1):35-45. 

In This Article

Discussion

This article attempts to address three questions surrounding the nature of communication between the nurse and family caregiver during the last few days of life of their loved one. Through a thorough review of the literature, the need for improved and sensitive communication and information regarding EOL care has been found to be an important need reported by family caregivers. Family members want to continue to be at the bedside and involved in every aspect of care and in the decision-making process. Throughout the chaos of dealing with nurses and other care providers and the dying process itself, family caregivers just want some normalcy back in their lives with their loved ones. Communication has been found to be a central part of the nurse-patient relationship. Communication and the nurse-patient relationship are based on the formation of trust and personal attitudes and values brought into the relationship by the nurse. A team approach has been shown to be an important feature of communication in EOL care, particularly when the nurse is involved from the beginning of the illness trajectory. All four themes that were examined to address the questions in this article were related to one another; at times, it was difficult to decide which category would be the most appropriate for classification.

What is not yet known about this topic deals specifically with communication of the imminence of death by the nurse to the family caregiver in the last days or hours of life. Many articles and studies have examined the physical signs and changes that take place as the body is dying. Research on the nature of the environment, communication, and emotional coping of the family caregivers once the imminence of death is communicated is limited at best. Although the death of a person with terminal illness on hospice is expected, it is not fully anticipated by the family until the physical changes make it a reality. What does the family do with that information telling them their loved one's death is imminent? Does the process of letting go occur at that point? Does the nature of grief change at that point? What can nurses do for the family during that final stage? These are all questions not yet answered in the realm of palliative and EOL research.

To address the gaps in knowledge on the topic of nurse and family communication in EOL care, there should be a study describing the lived experience of family caregivers after the communication of the imminence of death by the nurse. Before any conceptual perspectives can be formulated to guide clinicians in practice on how to best communicate that information, the lived experience surrounding the nature of that phenomenon must be explored. The proposed methodology would be a phenomenological qualitative design with a hermeneutic process of interpretation. A purposive sample of four female and four male family caregivers of patients with advanced cancer who have died within the last 6 months on hospice care in the home would be selected. The purpose of limiting the terminal diagnosis to only cancer is to better capture the similarities within the illness and dying trajectories. Pediatric, non-English speaking, and persons with primary tumors of the brain would be excluded. Data would be collected through open, semi-structured interviews focused on the time that the imminence of death was communicated to the family caregiver by the nurse. Data would be collected until the point of saturation occurs. Data would be analyzed by two researchers independently and then together for common themes. The themes would be taken back to the participants for checking and feedback for credibility. Through the process of exploring these accounts, it is hoped that benefits of closure and positive reflection would come to the family participants.

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