Date of Award

2020

Degree Type

Dissertation

Degree Name

Doctor of Philosophy in Nursing

Department

Nursing

First Advisor

Marlene Dufault

Abstract

Patients with end-stage and life-threatening diseases are frequently admitted to the intensive care unit (ICU). In fact, the ICU is the place of death for one in five patients in the United States due to the acuity of this population. Despite the high frequency of death in ICUs, evidence suggests that there is a need to improve end-of-life care (EOLC) for these patients.

Additionally, advancing medical technologies have contributed to the rescue culture of ICUs and in some cases has increased the use of aggressive and ineffective life-support therapies. Since critically ill patients are often too ill to participate in EOL treatment decisions, family members are asked to speak for patients, participating in decision- making with members of the healthcare team to determine the goals of care and to make decisions regarding withholding or withdrawing life-sustaining treatments. Although these conversations with families are common in ICUs, the communication is often difficult for all those involved. While healthcare providers have become more active in the role of managing the deaths of critically ill patients, many continue report the lack of adequate preparation for these complex skills. EOL decision-making is an important issue faced by ICU nurses who are on the front lines providing care to patients and families.

Despite the frequency in which ICU nurses are required to provide EOLC, nurses report variability in the ways in which care is operationalized and the extent of their involvement. It is concerning that nurses’ actual participation or level of involvement in EOL decisions in the United States remains unclear despite endorsement of their roles by professional organizations and established protocols for ICU, palliative and end-of-life care practices. Hence, there is a need to clarify role expectations in clinical practice.

While almost two decades of nursing research suggests that nurses agree about the value and importance of quality EOLC, contrasting experiences have been reported related to levels of involvement in some aspects of care and decision making in clinical practice. Thus, examination of the prevalence of nurses’ involvement in EOL communication, care practices, and identification of factors that may contribute to or predict involvement may help to explain the documented variations in EOL care in ICUs. Few studies conducted in the U.S. have specifically examined ICU nurses’ actual involvement in EOL decision-making. Much of the available work has identified deficiencies in communication, ethical issues, and barriers to optimal EOL care. It has been suggested that nurses are at times dissatisfied with EOL decision-making practices and the quality of EOL care provided.

Communication is the centerpiece of EOL care in the ICU from which all other aspects of care emanate. As interest grows in improving the quality of EOL care in ICUs, the impact nurses can have on ICU patients and families takes on greater significance. End-of-life care in the ICU is challenging. Studying the involvement of ICU nurses in EOL communication and decision- making will contribute to our understanding of how these roles are operationalized, increase active participation by ICU nurses within the interdisciplinary team, and enhance overall quality of EOL care.

The purpose of the studies in this dissertation was to advance understanding of the nurses’ involvement in end of life communication and care practices in the intensive care (ICU) setting. This dissertation will be comprised of three separate manuscripts which will address the following aims:

Manuscript 1: To provide a systematic review of theoretical and empirical research and synthesis of the findings related to nurses’ involvement in EOL care and communication in ICU settings.

Manuscript 2: To explore role theory as a potential framework for understanding nurses’ involvement in EOL care in ICU settings.

Manuscript 3: To describe ICU nurses’ perspectives of their involvement in EOL communication and decision making. Identify potential factors or contribute to nurses’ preferences for involvement.

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