Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting.1 End-of-life (EOL) care is primarily focused around supportive measures for the dying patient and their family to achieve the highest quality of death (QOD). Quality of death is defined as a multidimensional construct, which encompasses physical, psychological, social, and spiritual experiences; life closure; death preparation and circumstances of death; and characteristics of health care at the EOL.2
Individuals near EOL are often unable to communicate, at which time friends and family (families) of the dying are an important focus of care requiring specific skills, support, and resources.3 Existing literature demonstrates a significant need for quality improvements in EOL care in the hospital setting with a specific focus on improving communication between health care professionals and family.2-7
Families of dying patients desire a more active role in EOL care but are unsure of how to participate because of ambiguous communication from health care professionals.8 With a lack of communication about the dying process, they become attentive to visual and auditory cues from the patient and environment, leading to assumptions and misunderstandings about prognosis.5 For example, families may mistake tremors or seizure-like activity for purposeful movement, which can lead to false hope and mistrust in the health care team. Families need to know the difference between a normal dying process as opposed to what they perceive as suffering, to avoid emotional trauma caused by the perception that their loved one suffered while dying.9
Nurses play an important role in helping families understand the dying process by communicating clear, direct, and consistent patient information7 using easily understood language.3 Nurses skilled and comfortable with EOL discussions improve quality of life and patient satisfaction in the hospital setting.10 Nursing education regarding EOL care is inadequate, leaving new nurses feeling unprepared and lacking coping skills.11,12
Because of the unnecessary patient suffering that can result from this knowledge deficit, the CARES tools were developed by Bonnie Freeman, DNP, RN, ANP-BC, ACHPN, formerly a nurse practitioner in the Department of Supportive Medicine at City of Hope in Duarte, California. The CARES tool is an acronym-organized pocket-sized reference based upon the most common symptom management needs of the dying. This includes Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. It is designed to assist nurses in linking evidence-based knowledge to clinical practice with the goal of achieving a peaceful death.1 In addition to the CARES tool for nurses, a second CARES tool entitled Final Journey was developed. Final Journey is an acronym-organized (CARES) detailed booklet designed for family members of dying patients that explains the difference between a normal dying process and suffering. Final Journey teaches families about body changes that may happen as part of the normal dying process and what could be a sign of suffering. In addition to basic explanations, it includes recommendations for EOL care that can be provided by families and promotes communication. Use of the CARES tools can assist in optimizing EOL care by ensuring all components are in place to allow for a peaceful death and to support families of the dying during the process.1
The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. This project was conducted to answer the following 2 questions: (1) does use of the CARES tool improve nursing knowledge and comfort related to EOL care, and (2) does use of Final Journey improve the EOL experience of families of dying patients? Specific aims include assessing nursing knowledge and comfort related to EOL care, implementing use of the CARES tools, evaluating the impact of the CARES tool on nursing knowledge and comfort related to EOL care, and evaluating the impact of Final Journey on families experience with EOL care.
This project used the plan-do-study-act cycle of the “Model for Improvement”13 as the framework to integrate this tool of anticipatory guidance education about the EOL into clinical practice. It can be challenging to integrate new tools and procedures into clinical practice. The plan-do-study-act model guided the process of improvement through (1) planning an improvement initiative, (2) implementing the change, (3) assessing the outcomes, and (4) acting based upon the outcomes.
This project utilized a pre- and post-quasi-experimental design with a pre-educational and posteducational intervention. Presurveys and postsurveys evaluated self-reported changes in knowledge and comfort related to EOL care before and after use of the CARES tool. In addition, one-on-one interviews were conducted to obtain qualitative data from nurses regarding family's perceptions of Final Journey. The CARES tool and Final Journey are collectively termed “the CARES tools” for the purpose of this article. All study procedures were conducted under institutional review board approval after expedited review in the setting of minimal harm risk.
Sample and Setting
Convenience sampling of registered nurses was used on a 16-bed medical progressive care unit at a western Pennsylvania hospital. This 16-bed unit was chosen based upon the frequency of caring for patients at EOL.
Using the components of the CARES tool, the preintervention and postintervention survey questions were developed by the principal coordinator. Additional questions were included to assess the overall knowledge and comfort related to EOL care and confidence in communicating with families about the dying process. An educational PowerPoint presentation was developed by the principal coordinator to inform nurses of project details and to introduce the CARES tools. Interview questions were developed to capture feedback nurses received from families regarding Final Journey, as well as the nurses' own perspectives regarding the usefulness of the tool. All materials were approved by all authors before use.
Nursing staff completed a preintervention survey (Table 1) to assess self-reported knowledge and comfort related to EOL care, knowledge of family needs, knowledge and comfort related to common symptom management needs of the dying, and confidence in communicating about the dying process with families of dying patients. Nurses self-rated their knowledge and comfort of these components using a Likert scale. A 4-digit numerical code was required for the purpose of comparing preintervention and postintervention surveys while maintaining anonymity.
After completing the preintervention survey, nurses independently reviewed the educational PowerPoint. Following review, nurses completed a 5-question posttest, which required a 100% pass rate to ensure understanding of project requirements before implementation. The 100% pass rate was achieved through remediation as necessary.
Once preintervention surveys and education were complete, copies of the CARES tools were made available on the unit. Nurses were asked to independently use the CARES tool when providing EOL care. A copy of Final Journey was provided to all family members of “comfort measures only” (CMO) patients by the admitting nurse upon arrival to the unit. Before the end of that nurse's shift, he or she revisited the tool with families, offering to clarify any questions or concerns. Nurse discretion was used when offering the tool. For example, if a family member appeared severely emotionally distressed or not accepting of the anticipated death, the tool was not provided. After implementation, nurses completed the postintervention survey (Table 1) and were interviewed by the principal coordinator to obtain qualitative data regarding the feedback they received from families about Final Journey.
This project took place over a 5-month period from September 2017 through January 2018. Of 11 nurses employed on this unit, a total of 9 participated (82%). For unknown reasons, 2 nurses did not participate. A total of 30 CMO patients were admitted to this unit during data collection.
Descriptive statistics of the nurses are displayed in Table 2. All 9 nurses were full-time employees of the progressive care unit. Most nurses were in the age range of 30 to 39 years, had greater than 6 years of nursing experience, and held bachelor degrees in nursing. Years of palliative care experience varied according to years working in that specific unit; however, most (n = 3) nurses had either less than 1 year or more than 6 years (n = 3) of palliative care experience.
Preintervention and Postintervention Survey
Preintervention and postintervention survey results were evaluated for self-reported changes in knowledge and comfort related to EOL care at baseline and after use of the CARES tool (Figure). A paired-sample t test was conducted using SPSS for comparison of survey results with a predetermined significance level of less than 0.05 (Table 3). All postintervention survey scores improved after use of the CARES tool. Of these components, 5 of 9 postintervention survey changes were statistically significant. These 5 components included (1) knowledge regarding EOL care, knowledge, and comfort in addressing symptoms including (2) comfort/pain management, (3) airway, (4) emotional support of the patient and his/her family, and (5) confidence in communicating about the dying process with families of the dying patient.
All 9 nurses participated in a semistructured interview to obtain qualitative information regarding the feedback that nurses received from families about Final Journey. Responses were recorded by the interviewer and reviewed by 2 additional authors for identification of main themes (Table 4). The 3 main themes identified in regard to Final Journey include (1) “reinforces EOL care information for loved ones,” (2) “helps nurses answer difficult questions,” and (3) promotes and encourages communication between staff and loved ones.”
Findings from this project are similar to those of previous studies that suggested that nurses who receive additional EOL education are more comfortable communicating with dying patients and their families and improve EOL care.10 Of note, the findings of Moir et al10 are specific to inexperienced nurses. Although this project did not specifically compare outcomes between nurses based upon years of experience, several new nurses did report particular usefulness of the CARES tools in relation to being new and inexperienced with CMO patients. Data from this project also support the findings in Caswell et al3 that families of dying patients experience a better QOD when mutual understanding was achieved because of improved communication.
IMPLICATIONS AND RECOMMENDATIONS FOR NURSING PRACTICE
Use of the CARES tool can help nurses provide optimal, evidence-based EOL care to dying patients and their families. Final Journey can be used as an opportunity to improve the EOL experience as perceived by families of dying patients. Improving QOD in the hospital setting is becoming increasingly important. Improving EOL care provided by nurses and improving the EOL experience for families of the dying are 2 main focuses for quality improvement that can be achieved through the use of the CARES tools.
This project was limited by a small convenience sample recruited from a single hospital unit. Given the frequency of EOL care provided by nurses working on this unit, it is possible that the skill level of this sample was more advanced than that of general progressive care nurses. Despite an improvement in all postintervention survey components after use of the CARES tool, only 5 of 9 were statistically significant. This may be explained by the likely above average baseline knowledge of this nursing sample. The self-developed preintervention and postintervention survey was chosen as the method of evaluation versus a validated preexisting tool for the purpose of assessing EOL care components specific to the CARES tool.
Another limitation of this project involved possible bias because the author/principal investigator conducted the interviews. Face-to-face interviews were chosen as the method of evaluation in an effort to obtain more candid and elaborate insight from nurses. Despite detailed responses from nurses during interviews, the information obtained regarding feedback from families about Final Journey was secondary and therefore at an increased risk for bias. Nursing discretion was used when providing Final Journey to emotionally distraught family members. As a result, all 30 families may not have received the booklet.
With in-hospital deaths on the rise, nurses need to be adequately prepared to care for dying patients and their families to improve the overall EOL experience. Use of the CARES tool for nurses significantly improved knowledge regarding EOL care, knowledge, and comfort in addressing symptom management needs of the dying, including comfort/pain management, airway and emotional support, and confidence in communicating about the dying process with family members of dying patients. Final Journey helped families be more informed, helped nurses answer difficult questions, and promoted and encouraged communication between health care professionals and families. Through use of the CARES tools, unnecessary suffering at EOL can be mitigated by improving the EOL knowledge of nurses and the EOL experience as perceived by family members of dying patients.
The CARES tools are available as free downloads at www.carestool.com.
The authors thank the progressive care registered nurses at UPMC Mercy and Bonnie Freeman who were instrumental in establishing the CARES tools.
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Keywords:© 2019 by The Hospice and Palliative Nurses Association.
CARES tool; end-of-life care; Final Journey