YOU ARE AN EMERGENCY NURSE PRACTITIONER (ENP) in the emergency department (ED) of a southeastern university associated hospital when J.T., a 67-year-old Caucasian male, is brought in with severe ascites. He was diagnosed 1 year ago with metastatic colon cancer stage 3 and has had rounds of surgery, radiation therapy, and chemotherapy. He is accompanied by his wife and one daughter, who is in her early 40s.
As you enter the examination room, you note J.T. to be in obvious discomfort, as evidenced by diaphoresis and grimacing. He complains of overall body weakness and his right upper right abdomen pain 3/10 worse with movement and breathing 5/10. He explains his oncologist said this is due to the ascites affecting his liver. He states he has a limited appetite with early satiation. When he tries to eat more than a few bites, he feels nauseous to the point of near vomiting. His wife and daughter are also concerned because today he was confused and was not able to easily get out of bed. This, coupled with his breathing problems, pain, and lack of appetite, prompted their visit to the ED today.
The patient's vital signs are heart rate 110, blood pressure 119/60, respirations 30 breaths per minute and shallow, and temperature 99.6°F with SpO2 of 88%. You note that his urine in the urinal is markedly dark orange. Physical assessment reveals a pallor with mild jaundice and cachexia with marked grade 3 ascites and caput medusae (visible veins surrounding his navel). There is grade 3 bilateral lower extremity edema with minor scrotal edema. Upon auscultation, lung sounds are clear but decreased bilaterally in the lower fields, and there is a grade 3 systolic cardiac murmur.
You drain his ascites in the ED, and the patient states that his shortness of breath and pain are “better.” You page his oncology nurse practitioner (NP) who comes from an accompanying department of the hospital. She is compassionate but firm, and informs you, the patient and his family that his condition is terminal, and the oncologist has determined that there are no further invasive procedures, radiotherapy, or chemotherapy to treat his metastatic cancer that will be of benefit. She adds that was why she initiated a referral to hospice several weeks ago. She states she believes he has about 6 months to live and expresses her condolences. She says that she is concerned about giving this important yet tragic information in the ED, as ED staff may feel unprepared to care for the dying patient and his family. She further states she regrets that the patient and family may not be able to best process this information here due to the limited time and counseling resources available in the ED, but she needs to leave and answer a page.
The patient's wife and daughter tell the ENP that they have not yet seen anyone from hospice, and admit they feel helpless and fearful about what to expect at this stage of his disease. As his ENP, you have questions about whether to push for hospital admission, given his worrisome vital signs, pain, and breathing difficulty or to discharge him home to his family's care, knowing that they have fears and concerns. You also feel time compressed as there are 40 patients waiting to be seen in the waiting room, and staffing is down due to absenteeism.
McCallum, K. J., Jackson, D., Walthall, H., & Aveyard, H. (2018). “Exploring the quality of the dying and death experience in the emergency department: An integrative literature review,” International Journal of Nursing Studies, 85, 106–117.
The purpose of this systematic review study was to examine health care provider experiences when caring for dying patients in the ED. The review was limited to research published in English from 1990 to 2017. The year 1990 was chosen as the starting point because that was the year the World Health Organization (WHO) set the scope and definition of palliative care (WHO, 1990), and the authors assumed this seminal paper would influence subsequent research in palliative care and end of life (McCallum, Jackson, Walthall, & Aveyard, 2018). The authors initially searched PubMed, the Cumulative Index to Nursing and Allied Health Literature, Magonline (internurse), and the Cochrane Library databases using the key words death, sudden death, dying, caregivers, spouses, nurses, medical staff, chaplains, allied health professionals, end of life, palliative, and terminal care. The initial search yielded 65 nonduplicate studies. Study inclusion criteria included studies involving dying adults older than 18 years, study setting limited to the ED, and studies whose primary purpose was to examine health care provider experiences. Exclusion criteria included studies focusing on resuscitation and studies that described health care provider experiences across multiple hospital settings. Thirty-three of the initially retrieved articles were excluded after applying inclusion/exclusion criteria to the titles and abstracts. Of the remaining 32 articles, 16 were also excluded after failing to meet inclusion criteria. The remaining 16 articles, which included qualitative, quantitative, and mixed-method designs, were then assessed for research quality using the National Institute of Clinical Excellence (NICE) research appraisal checklist tool (NICE, 2012).
The NICE appraisal tool is a validated instrument developed by the NICE organization, an independent agency that sets policy standards for the British National Health System similar to the United States Agency for Healthcare Research and Quality. NICE standards are evidence-based and developed with input from professional and community groups (NICE, 2012). NICE research appraisal tools were developed to provide researchers with a systematic approach to evaluating the quality of qualitative and quantitative research publications by assessing for bias and internal and external validity in research methods and analysis. The checklist yields a score that provides an objective analysis of the quality of the reported research evidence (NICE, 2012; Zeng et al., 2015). The NICE appraisal checklists guide researchers on how to conduct research reviews and are also used by the NICE organization in the development of clinical practice guidelines for the British National Health System.
After using the NICE checklist to rate the quality of evidence in the study sample, the authors conducted a qualitative analysis of research findings by applying code words to selected texts within each study (McCallum et al., 2018). By combining codes and using an iterative synthesis process, the authors identified eight interrelated, descriptive themes within the sample.
The eight descriptive themes obtained from the analysis of the systematic review exploring health care providers' experiences of death and dying in the ED are shown in Table 1. The most common theme, identified in 10 of 16 studies, was that health care personnel do not see the ED as a setting for death and dying but rather as a setting for resuscitation and preservation of life (Bailey, Murphy, & Porock, 2011b; Chan, 2011; Decker, Lee, & Morphet, 2015; Grudzen et al., 2011; Kongsuwan et al., 2016; Marck et al., 2014; McCallum et al., 2018; Smith et al., 2009; Weil et al., 2015; Wolf et al., 2015). Another common theme was that when death does occur in the ED, health care personnel perceive their efforts as failures because death is not considered a normal ED outcome (Bailey, Murphy, & Porock, 2011c; McCallum et al., 2018; Wolf et al., 2015). A third theme was that ED staff and providers feel underprepared in caring for dying patients in the ED (McCallum et al., 2018). For example, ED personnel discussed lacking education in palliative care content during training and expressed a desire to learn more about palliative care and symptom management. Additionally, providers described confusion about the meaning of palliative care and how it fits with the focus of emergency medicine practice (Bailey et al., 2011b; Beckstrand, Wood, Callister, Luthy, & Heaston, 2012; Decker et al., 2015; Hogan, Fothergill-Bourbonnais, Brajtman, Phillips, & Wilson, 2016).
Table 1. -
Eight themes from the literature
Care in the ED is about living not dying
Staff perceive that death is a failure
Staff feel underprepared to care for the dying patient and family in this environment
There is limited time for safe standard of care
Staff stress and distress
Staff use of distancing behaviors
The care of the dying role is devolved from medics to nurses at the end of life
Patients and staff perceived that ED is not the preferred place of death
Note. ED = emergency department.
Another theme was that ED staff do not feel they have sufficient time to provide the resources to promote safe standards and quality care to a dying patient in the ED (McCallum et al., 2018). ED staff described that dying patients and their families require more time, privacy, and space than can be provided with a full patient load in a crowded ED (Beckstrand et al., 2012), which contributes to the fifth related theme that caring for dying patients in the ED contributes to provider stress and distress (McCallum et al., 2018). Also mentioned in several studies was that personnel who care for dying patients in the ED require high levels of emotional intelligence to cope with the emotional aspects and feelings of powerlessness that are experienced when death occurs to prevent burnout (Bailey, Murphy, & Porock, 2011a; Bailey et al., 2011b; Codier, 2014; Codier & Codier, 2015; Powell, Mabry, & Mixer, 2015).
In regard to coping with death in the ED, another reported theme was provider use of distancing behaviors when there is not enough time to get involved in providing care to dying patients and their families (McCallum et al., 2018). Distancing behaviors were acknowledged as contributing to communication failures between health care personnel and patients and their families. This results in patients and families feeling ignored and a negative ED experience (Bailey et al., 2011b; Decker et al., 2015).
Another theme was that when a patient is determined to be “palliative” care then shifts from physicians and medics to nursing, which often leads to a more positive experience for patients and their families (McCallum et al., 2018). Some nurses reported feeling privileged to care for dying patients despite the stress and belief that dying patients do not belong in the ED (Hogan et al., 2016). The final theme was that patients and ED providers do not see the ED as a preferred place of death (McCallum et al., 2018). Patients report using the ED as a safety net for symptom control to relieve the burden of their care from their families (Grudzen et al., 2011); however, ED staff do not prioritize palliative care in the ED, which limits care options for patients at the end of life (Weil et al., 2015). Similarly, without palliative care options, Marck et al. (2014) found many patients at the end of life are often subjected to inappropriate medical intervention in the ED that is unlikely to provide any benefit instead of receiving compassionate, end-of-life, palliative care measures.
The authors conclude that their review demonstrates that patients who die in the ED often have a poor experience of care and that the staff and providers who care for them also experience stress and distress (McCallum et al., 2018). Among the factors that contribute to the negative quality of the death and dying experience in the ED include the culture of the ED with its focus on resuscitation methods, the lack of palliative care training for nurses and physicians, and ED resource constraints that prevent adequate time, space, and privacy for patients and their families. The authors suggest that each of these factors is potentially modifiable and provide for areas for future research.
For example, with better preparation and education in palliative care, health care personnel would have an awareness of treatment options that may reduce suffering for patients and their families. This could shift the focus from unnecessary treatment to appropriate symptom management and access to resources allowing the ED to serve as a better source for obtaining beneficial care. Improved palliative care services and access to those services through the ED may also lead to the improved architectural design of care areas where dying patients and families are assigned to quiet, private areas conducive to relaxation and symptom control. Finally, including palliative care education for all providers may shift the current ED culture by promoting skill development and emotional intelligence, allowing health care personnel to recognize that death is not a failure, but an aspect of total person care regardless of setting. Teaching ED personnel strategies to cope with feelings of sadness, distress, and of being overwhelmed that often accompanies caring for a dying patient and their family is likely to improve the quality of the death experience for patients, families, and health care providers. The authors suggest that further research is needed to test new models of ED care at the end of life to promote better practice models for ED staff and providers. Another area of research that can inform improved models of care includes studying how caregivers experience the end of life within the ED.
A major strength of McCallum and colleagues' study (2018) is that it is the first systematic review to examine the evidence related to the quality of the death and dying experiences among ED providers since the publication of the WHO's (1990) recommendations for implementation of palliative care within health systems. What the findings show is that more work needs to be done. Another strength is that the authors followed a rigorous process for data abstraction and selection of studies to ensure that study conclusions were evidence-based. Study limitations include a small sample size and inclusion criteria limited to English language publications. This may have led to cultural bias in the interpretation of findings, limiting the generalizability of results to other cultures. Finally, by restricting the search to research selected for publication from 2000–2017 publishing bias may affect and limit the authors' interpretation of findings.
McCallum and colleagues' study (2018) was well conducted and adds to the palliative care literature by highlighting the challenges that emergency providers continue to face in caring for dying patients and their caregivers at the end of life. By using the NICE appraisal tool and a standardized, systematic approach in their analysis, the authors provide a validated method to future researchers interested in replicating or expanding their work.
Although society recognizes death as a natural life transition and with increasing research and efforts to bridge palliative care with emergency medicine education and practice (Quest, Marco & Derse, 2009; Quest, Herr, Lamba, Weissman, & the IPAL-EM Advisory Board, 2013), McCallum and colleagues' review (2018) brings to focus the challenges encountered in the ED when patient care transitions from the relief of illness and injury to palliative care. The review highlights how ill-prepared many ED providers feel when caring for dying patients. The fact that only six of the 16 articles on ED provider experiences of death in the ED were published since 2013 also shows that this topic has not been well studied. Although much research has been completed on hospice patient-centered care (Baik, Cho, & Masterson Creber, 2019), McCallum and colleagues (2018) found no studies examining death and dying in the ED from the patient and family's experiences with ED personnel. Further research involving patients and their caregivers could inform ED palliative care practice models and ED provider educational preparation to ensure that providers obtain competency in culturally appropriate palliative care principles.
Although ED death rates declined by 50% between 1997 and 2011 (Kanzaria, Probst, & Hsia, 2016), ENPs can expect to encounter ED patient death throughout their careers. Despite the downward trend in ED death rates, an analysis of site of death among Medicare beneficiaries between 2000 and 2015 found that a quarter million of these recipients died annually in EDs where costs of care are substantial (Cubanski, Neuman, Griffin, & Damico, 2016; Teno et al., 2018). Therefore, ENPs must be prepared to recognize the end-of-life signs in their patients so that they can discuss palliative care options and services with patients and their caregivers to prevent unnecessary and costly treatments that may only prolong suffering.
Although ENPs must be prepared and competent in performing acute resuscitation and stabilization, McCallum and colleagues' review (2018) suggests that they must also be competent in assisting patients with end-of-life decisions and providing palliative care measures that reduce unnecessary treatment and suffering. Although McCallum et al. (2018) state that the term “palliative care” is used interchangeably with end-of-life care, the Center to Advance Palliative Care (CAPC) does not consider the terms interchangeable. The CAPC defines palliative care as care provided to people with serious illness requiring relief from disease symptoms with the goal of improved quality of life (CAPC, n.d.). With this definition, palliative care does not have the time-limited connotation of end-of-life. Palliative care can be employed at any stage in a serious illness, not only when the patient is within weeks or months of death.
Fortunately, efforts to bridge palliative care within emergency medicine have grown in the past decade, and ED clinical initiatives are increasingly mentioned in the research literature (Quest et al., 2009,2013). In fact, subspecialty education and certification in palliative care medicine is now available for emergency medicine physicians (Quest et al., 2009). The American College of Emergency Physicians (ACEP) provides free access to policy statements, research reports, and to the ACEP Palliative Care Toolkit that contains evidence-based guidelines for assessing imminent death and identifying those patients whose conditions are likely to benefit from early access to palliative care services (American College of Emergency Physicians, n.d.). These resources can be accessed on the ACEP website (www.acep.org). Early initiation of palliative care in the ED may reduce unnecessary ED visits and hospital admissions while also promoting improved quality of life (Revels, Goldberg, & Watson, 2016). Another excellent educational resource that is free and may be completed through online modules or within a group setting is the Education in Palliative and End of Life Care (EPEC) course (Northwestern Medicine, n.d.). The EPEC curriculum covers basic palliative care content, including legal issues, advance care planning, communicating difficult news, patient assessment, symptom management, among others (www.epec.net).
Other notable and highly recommended books on death, dying, and working with the terminally ill include Being Mortal (Gawande, 2014), The Unwinding of the Miracle (Yip-Williams, 2019), Everything Happens for a Reason and Other Lies I've Loved (Bowler, 2018), the groundbreaking On Death and Dying (Kubler-Ross, 1997), and the best overall survey of palliative care in America, Extreme Measures: Finding a Better Path to the End of Life (Zitter, 2017). A worthwhile online resource is the CAPC, which “provide(s) essential tools, training, technical assistance, and connection for all clinicians caring for people with serious illness” (CAPC, n.d.). In addition to clinician training and information, there is a patient and family website, which includes patient-centered blogs and palliative care provider directories. The American Association of Colleges of Nursing (AACN, 2016) has also published palliative care curricular recommendations within nursing. Other educational resources available through the American Nurses Foundation that can be submitted for continuing educational credit include the film Defining Hope (Mager, n.d.) that can be viewed in individual segments for discussion using accompanying study guides (https://hope.film/study-guide-videos/).
Death with dignity is an optimal outcome at the end of life and relies on clear communication of desires by patients and their families and an ENP's willingness to engage in crucial conversations to support patient wishes. Core ENP competencies include providing ethical, patient-centered, culturally diverse care inclusive of shared decision-making to achieve optimal care outcomes (Wilbeck et al., 2018). However, competency in palliative care is not listed as a unique core competency. This warrants consideration as ENP educators study how to best prepare ENPs for practice. Future research to examine outcomes of palliative care education on ENP practice seems warranted and could be useful in structuring curricula for these providers.
After the oncology NP leaves the ED, the ENP returns to reassess the patient and talk with the family about their understanding of his condition. The ENP recognizes that the patient's physical examination findings are consistent with sepsis, organ failure, and end of life. The ENP asks the patient about his end-of-life wishes and if he prefers to be hospitalized or return home with the support of palliative care and hospice. The patient states that what he really wants to do is return home to spend his remaining time with his family and friends. He then adds tearfully that he does not want to be a burden to his wife and daughter, who then embrace him and tell him that taking him home is what they both want as well. They also admit they are worried about his care and do not want him to suffer more pain and discomfort. The ENP asks if the family and patient will allow her to call the palliative care team to the ED to discuss home hospice services. She explains that this will allow them to have access to skilled nursing personnel that can provide pain medication and other measures to reduce his suffering. While the family and the patient wait for the team to arrive, the ENP calls the chaplain to sit with the family and answer questions as well as provide spiritual care. Two hours later, the palliative care NP presents a plan to the patient and his family and, along with the social worker, arranges for the delivery of necessary medical equipment. The plan includes having a nursing team meet them in their home the same day as his discharge. The ENP makes sure that the patient has enough medication to control his pain and oxygen to assist with his dyspnea before discharging him. She also asks the family if they have any questions about what to expect in the patient's final days to prepare them for the signs of imminent death. As the patient's discharge papers arrive, the ENP ensures that the family has no further questions and are comfortable with the plan. The ENP acknowledges the overwhelming sadness as the patient prepares to leave, but also feels gratified that she was able to assist in providing compassionate end-of-life care in a busy ED.
McCallum et al.'s (2018) article provides evidence that supports the inclusion of palliative care training for ENPs to prepare them for caring for patients and their families when death unexpectantly occurs within the ED or when a patient's condition is terminal, and patients need realistic, compassionate education about palliative and hospice care. Patients uninformed about the dying process, and palliative care, may imprudently believe that prolonging life is always the best option. With Medicare spending in the last year of life accounting for over one-quarter of all Medicare outlays (French et al., 2017), and with the peak of the baby boom yet to arrive at the end of life, the life-at-any-cost mind frame is not financially sustainable for families or the health care system. Research should continue to study optimal care models to assist the dying, their caregivers, and the ED professionals who care for them during this critical life transition.
As emergency providers, we must be prepared to care for our patients with confidence and compassion, even when death is the outcome. Our ability to serve the public with sensitivity is, indeed, why nurses continue to be America's most trusted profession (Stone, 2019). Our patients depend upon us for guidance amid their most trying life moments. We must become as educated as possible and meld this knowledge and awareness with the innate compassion inherent in our profession.
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