Abstract
Very little is known about the provision of or the need for palliative care in the Middle East, including Jordan. This study investigated the mortality rate, demographics, and clinical attributes of patients with cancer who had died in the intensive care unit (ICU) of a national cancer center over a 3-year period in Jordan. We reviewed the records of 661 patients who had died and found that the majority of the people were terminally ill at the time of admission (had metastatic cancer, multisystem organ dysfunction, and seriously ill). This approach differs from the usual practice worldwide in which it is uncommon to admit patients with cancer to the ICU at the end of life. Improving end-of-life care in the ICUs in Jordan requires further exploration of the cultural context in which end-of-life care practice occurs in Jordan and developing a palliative care approach that fit with the Islamic and Arabic culture.
Cancer continues to be one of the leading causes of death worldwide with an estimated 9.6 million deaths from cancer in 2018 (Bray et al., 2018; World Health Organization & International Agency for Research on Cancer, 2018). Patients with cancer are increasingly of older age, they live longer, and they face multiple health challenges (Bluethmann et al., 2016; Miller et al., 2016). Improving cancer survival rates, with the associated health complications encountered by patients, and the continuing evolution of technology in cancer care, have increased the need for more advanced care. Therefore, a greater number of patients with cancer are being admitted and treated in intensive care units (ICUs; Bos et al., 2015; Sauer et al., 2019).
In spite of the intensified management of patients with cancer and the advanced technology used in ICU, the mortality rates of these patients remains high (Aygencel et al., 2014; Sauer et al., 2019; Shimabukuro-Vornhagen et al., 2016). Worldwide studies have documented that admitting patients with cancer to ICU represents 15% to 21.5% of total ICU admissions (Bos et al., 2012; Soares et al., 2010), and the overall in-ICU cancer mortality rates were in the region of 20% to 50% (Aksoy et al., 2016; Auclin et al., 2017; Martos-Benitez et al., 2018; Ostermann et al., 2017). Regardless of the underlying malignancy, it is estimated that 5% to 7% of patients with cancer will be admitted at least once to an ICU within a 5-year period (Bos et al., 2015; Puxty et al., 2015). Moreover, it is estimated that between 18% and 40.3% of cancer decedents aged 65 years and older will be admitted at least once to an ICU in the last 180 days of their lives, and between 11% and 27.2% will be admitted to an ICU in the last 30 days of their lives (Bekelman et al., 2016). Of these admissions, 85% are patients with solid tumors, while the remaining 15% are patients with hematologic cancer (Taccone et al., 2009). Patients with cancer are admitted to the ICU primarily for postoperative care (57%), sepsis (15%), and for respiratory failure (10%; Soares et al., 2010).
In Jordan, cancer is the second leading cause of death after chronic cardiovascular disease, with an estimated 4,000 new cases diagnosed annually (Ministry of Health, 2015; Nazer & Tuffaha, 2017). The majority of the newly diagnosed cancer cases present at advanced stages—III or IV—with the majority of those patients dying within 1 year of diagnosis (Ministry of Health, 2015; Stjernswärd et al., 2007). In addition, palliative and health-care facilities that support terminally ill patients with cancer (e.g., hospice facilities, nursing homes, home-based palliative care services) are lacking in Jordan. Growing numbers of patients with advanced cancer and limited palliative and hospice facilities increase the risk of ICU admission for these patients, as reflected in recent Jordanian studies that have explored intensive care practices in Jordanian ICU settings (Almansour, 2015; Hawari et al., 2016). These studies found that admitting patients with cancer to the ICU for end-of-life care is considered a common practice in Jordan.
Despite these issues, information about the nature of patients, the practice of end-of-life care, and the ICU outcomes for patients with cancer are presently lacking in Jordan. Such information is essential to understand the current status and to consider where improvements can be made. Exploring mortality rates and characteristics for ICU patients with cancer is crucial for planning advanced care and providing quality end-of-life care. It also provides a point of reference for future evaluation and implications for practice and research.
This study is part of a national research project aimed at understanding and managing ICU care for patients with cancer at the end of their lives in Jordanian ICUs. The objective of this study was to explore the characteristics, mortality rates, and the determinants of length of ICU stay of patients with cancer who died in a national oncology ICU of a comprehensive cancer center in Jordan. Data related to intensive care interventions received in the last few days of life for those who died are reported in another article.
Methods
Design
This retrospective, single-center, chart review cohort design study was conducted in an ICU located in a cancer-specific center in Jordan. The center is a nongovernmental medical institution that provides not-for-profit services solely to patients with cancer. It is the only cancer center in the Middle East region treating both adult and pediatric patients. It has 352 beds and treats more than 3,500 new patients with cancer each year from various areas within Jordan, as well as from neighboring countries. Recently, the center established the first and the only comprehensive palliative and hospice care program in Jordan. The program offers various palliative care services that include inpatient consultation services at a hospital-based palliative unit, an outpatient palliative care clinic, and a palliative home care service. However, patients have very limited access to palliative care services because these are both privately provided and only available in the capital of the country (Bingley & Clark, 2009). The center has a 16-bed adult ICU that provides a Western-style approach to critical medicine for various patients with cancer or life-threatening conditions resulting from cancer or its treatments.
Data Collection
In this study, the electronic databases for all admissions to the ICU at the center between January 2014 and January 2017 were screened for patient death or survival to determine mortality rates. Data from previous years were difficult to retrieve due to inefficient records management systems. For the patients who died, data related to their clinical and demographic characteristics were reviewed. The following characteristics were retrieved: age, gender, illness severity on ICU admission; pre-ICU hospital and ICU length of stay; comorbidities (cardiovascular illnesses, neurological diseases, cerebrovascular diseases, cancers, and chronic lung diseases); and cancer-related characteristics (type, stage, and related complications). In our ICU, the severity of patients’ illness is assessed using Acute Physiology and Chronic Health Evaluation (APACHE II) scoring system (Knaus et al., 1981). APACHE II is the world’s most widely used severity of illness score that assess the disease severity for ICU patients using the worst value recorded during the first 24 hours of a patient’s admission to the ICU for 12 physiological variables (APACHE II score) and use it to predict outcome (APACHE II predicted mortality rate). In this study, the retrieved complications of cancer or of its therapy were categorized according to the number of organ systems affected by the complication. Pediatric patients aged younger than 18 years and patients admitted to the ICU for less than 4 hours were excluded, in addition to patients with medical records with inadequate relevant data.
The prerecorded, patient-specific data were collected by a team of ICU nurses. To make sure that the collated data were consistent and reliable, a paper-form tool was developed to record information from a data source. The team reviewed a small subset of records together before starting data collection to ensure that the data were extracted in a uniform manner for every patient. Data collection took place over a period of 1 year.
Ethical Considerations
The study was reviewed and approved for ethical and scholarly merits by the institutional review boards of the study cancer center (Reference: 16 KHCC 35). The requirement to obtain informed consent was waived due to the retrospective nature of the study. The study was also reviewed and approved by the Research Ethics Committee of the School of Nursing at the University of Jordan (Reference: 26–4-2016 SON).
Data Analysis
Statistical analysis was performed using the Statistical Package for Social Sciences software 22.0 (IBM Corp., Armonk, NY). Counts and percentages were used to describe the categorical variables, means (M) and standard deviations (±) for continuous variables. The ICU mortality rate over a 3-year period was calculated. Chi-square and Kruskal–Wallis statistical tests were used to compare the characteristics of deaths between years of death (2014, 2015, and 2016). Spearman correlation coefficient was used to examine the relationship between ICU length of stay and different patients’ characteristics. Significance was set at p < .05.
Results
Out of a total of 2,030 patients with cancer who were admitted to the ICU over a 3-year period, 669 patients died. Data from 661 health charts were retrieved and analyzed. The overall mortality rate was 32.9% with a slight decline from 2014 through 2016 (35.2%, 34.8%, and 30%, respectively). Table 1 reports the ICU’s total admissions and mortality rates as well as the demographic characteristics of those who died. The mean age of deaths was 54.88 years (±15.51) with 42% (N = 282) aged 60 years and older. The majority of the patients who died were male (N = 384, 58.1%) and spent 3 days or less in the ICU before their deaths (N = 402, 60.8%). Before their admission to the ICU, the average length of stay in the cancer center was 8.19 days (±13.27).
Characteristics of Deceased Patients (N = 661).
Note. APACHE = Acute Physiology and Chronic Health Evaluation; ICU = intensive care unit.
Regarding illness severity, 56.6% of the deaths had ≥25 score on the APACHE II scoring system, which denotes a mortality rate of >50%. The mean APACHE II predicted mortality rate for the overall deaths was 48.99% (±23). Most patients who died in ICU had Stage III or IV cancer (N = 388, 58.7%), suffered from one or more comorbidities such as cerebrovascular, cardiovascular, respiratory, and neurological diseases (N = 348, 52.6%), and transferred to ICU from the cancer center’s inpatient wards (N = 423, 63.9%). Of the patients who died, 576 (87.1%) had cancer related complications that affected three or more different organ systems. Pulmonary complications were the most frequent complication (N = 296, 44.8%) followed by sepsis (N = 174, 26.3%).
Table 2 presents the comparison between deceased patient demographics, according to years of death (2014, 2015, and 2016). It was found that there were no significant differences between the 3 years of deaths with respect to age, χ2(2, N = 661) = .42, p = .81; gender (χ2 = 2.07, p .81); APACHE II score, χ2(2, N = 661) = 0.42, p = .81; APACHE II predicted mortality, F(2, 555) = 0.73, p = .48; the total number of comorbidities, χ2(2, N = 658) = 0.87, p = .65; or ICU length of stay, χ2(2, N = 661) = 0.01, p = .99.
Comparison Between Deceased Patients’ Demographics, According to Years of Death (2014, 2015, and 2016).
Note. APACHE = Acute Physiology and Chronic Health Evaluation; ICU = intensive care unit.
aKruskal–Wallis test.
bChi-squared test.
cOne-way ANOVA.
In this cohort of deaths, a longer time of ICU admission was found to be associated with advanced age (r = .08, p = .04), having a longer hospital stay before being admitted to the ICU (r = .14, p < . 001), and a higher number of organ systems affected by complications (r = .11, p = .004). Shorter ICU stays were found with patients who had higher APACHE II scores (r = –.19, p < . 001), higher mortality rates (r = –.12, p = .004), and an increased number of comorbidities (r = –.11, p = .005). The correlation coefficient values though indicate that the relationships were very weak. Patients’ stay in ICU was not found to be correlated with cancer stage (r = –.06, p = .21; Table 3).
Correlations Between ICU Length of Stay and Patients’ Characteristics.
Note. APACHE = Acute Physiology and Chronic Health Evaluation; ICU = intensive care unit.
Discussion
This retrospective chart review study sought to explore the demographics, clinical attributes, and causes of death of patients who died in a cancer ICU over a 3-year period. Little is known about end-of-life care in the Middle East, including Jordan. Many resources that are available in the West are lacking in Jordan. There is a need to explore the current end-of-life care needs and care practices in Jordanian ICU. This study is the first to examine the intensive care practice and outcomes in Jordan which is vital to understand what is currently going on and consider where improvement can be made. The results revealed that almost one third of patients with cancer who were admitted to the center’s ICU died there. Moreover, while the clinical severity scores for deaths remained overall unchanged from 2014 through 2016, the mortality declined. The mortality rate in our setting was broadly in line with the literature. Various worldwide studies have described the mortality rates of patients with cancer hospitalized in ICU in the range of 20% to 50% (Aksoy et al., 2016; Auclin et al., 2017; Martos-Benitez et al., 2018; Ostermann et al., 2017; Xia & Wang, 2016). The literature suggests that there is a substantial variation in the mortality of ICU patients with cancer depending on the type of ICU; cancer-specific criteria (e.g., histological subtype, stage, and the number of metastases); and other prognostic factors (e.g., sepsis, performance status, and organ dysfunction; Benekli, 2018; Sauer et al., 2019). The higher mortality rates reported in the literature were among the frail elderly, those with advanced metastatic cancer, higher prevalence rates of comorbidities, and a higher severity of clinical condition (Aygencel et al., 2014; Kizilarslanoglu et al., 2017; Martos-Benitez et al., 2018). The mortality rates in this study are also comparable with those of critically ill patients without malignant diseases reported in a recent epidemiological study in Jordan (32.9% vs. 34.6%; Almansour et al., 2020).
Even though the overall mortality rate observed in this cohort resonates with the literature, our results demonstrate that the majority of the deaths were older people, at the end stages of their cancer (Stage III or IV), with multisystem organ dysfunction, and high scores of illness severity. These results, in addition to the fact that the majority of the deceased patients spent 3 days or less in the ICU before their deaths, convey a clear picture that the majority of patients were dying at the time of ICU admission. Compared with the characteristics of ICU patients with cancer observed in this study, the wider contemporary literature on intensive care for cancer suggests quite remarkable differences from what is considered common eligibility criteria of patients with cancer for ICU admission worldwide. A recent consensus has suggested that full ICU resources should only be offered for critically ill patients with cancer with a curative goal of care; with a considerable expected life span; and if long term survival is compatible with the general prognosis of the underlying malignancy (Kiehl et al., 2018). The consensus has also recommended that dying patients, patients with poor performance status, or who are not eligible for anticancer treatment should not be admitted to ICU in general. This is consistent with what has been suggested in an earlier consensus of using a prognosis of 1 year as a cutoff point for full intensive care support (Azoulay et al., 2011).
Insights into some of the mechanisms that may be behind our findings are linked to the cultural milieu observed in studies exploring end-of-life practices in ICU settings in Jordan (Al-Awamer & Downar, 2014; Almansour, 2015; Almansour et al., 2019). In an original study, Almansour (2015) explored end-of-life care practices of ICU staff (15 nurses, 10 physicians, and 5 head nurses) in 5 general ICUs providing care for different medical illnesses, including cancer, at two major hospitals in Jordan. The staff revealed that the presence of terminally ill patients with cancer in ICU is a common phenomenon in their hospitals, and they perceived that this is a family decision. The staff perceived that seeking consent from families in decision making was mandatory due to a lack of legal clarity around the practice of end-of-life decision making and the fear of legal action by the patient’s family. These staff perspectives were also reflected in a very recent national quantitative study that explored the perceptions of Jordanian ICU staff regarding the obstacles and facilitators to end-of-life care (Almansour et al., 2019). Additional reasons that underpin our results are related to cultural norms for clinicians in the Middle East to avoid open, direct, and effective end-of-life discussions with relatives (Al-Awamer & Downar, 2014), a lack of frameworks for interdisciplinary team work, and the challenge of embedded patterns of hierarchical interaction (Silbermann et al.,2013).
In addition, the majority of deaths were transferred to ICU from hospital wards. This, in addition to the cultural norm for relatives to have a crucial role in end-of-life decisions, highlights the importance of empowering clinicians to address and discuss the issue of ICU admission with relatives before approaching the end-of-life stage. Moreover, to empower families through the provision of information about how best to support their relative and to encourage the notion of shared decision making and consultation to minimize undue admission to the ICU at end of life.
Minimizing intensive care hospitalization near the end of life helps in achieving the widely suggested goal of a “good death” or “successful death” (Meier et al., 2016). This goal encompasses dying free from undue physical and psychological suffering, with dignity and respect, surrounded by family and friends, and with the proper management of cultural, spiritual, and religious needs and wishes. Further, fewer ICU visits at the end of life helps to minimize feelings of guilt and depressive symptoms in family members, alleviates moral distress in ICU professionals, and is a better allocation of ICU resources (Kelley & Morrison, 2015; Metaxa et al., 2019). On the other hand, provided most of our patients admitted to the ICU are at the end of their lives, end-of-life care and management should be tailored to support this population and their relatives. Our findings also illustrate the importance of equipping ICU staff with the knowledge and skills to provide end-of-life care alongside curative and lifesaving care.
Findings of the study suggest several new directions of investigation for future research. There is a need to explore further the cultural context within which end-of-life care practice occurs in Jordan. Another important investigation for future research is to look at the decision-making experiences, needs, concerns of family who support relatives who are no longer able to make their own health-care decisions in the Middle East to develop evidence-based approaches to family care and communication. Also, other approaches in addition to the currently used prognostic model should be attempted and evaluate to improve the accuracy of cancer prognosis in ICU. Further adjusting for the available model is also required.
The retrospective nature of this study, in addition to the fact that our study was conducted in a single specialized oncological ICU in a cancer center, limits the generalizability of our findings to other ICU settings in Jordan.
Conclusion
A high percentage of the cancer patients admitted to ICU were near the end-of-life stage and died, usually due to cancer progression. There is a need to gain further understanding on the current practice, trends, and needs as well as the cultural environment to reveal possible targets for future interventions in the context of end-of-life care in critical care. Proper management of ICU admissions for patients with cancer at the end of life requires a culturally appropriate model of shared decision making in which clinicians, relatives, and patients—where possible—participate to develop and implement a care plan that reflects clinical evidence and balances risks and possible outcomes with patient preferences and values. Intensive care should be tailored to support patients with cancer and their relatives at the end of life.
Footnotes
Acknowledgments
The authors would like to thank all participating health-care professionals, without which the study could not have come to a successful conclusion. Appreciation goes to the University of Jordan for the logistic support provided during the study.
Author Contribution
All authors have contributed to writing the article and have seen and approved the article in its final version.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Almansour has received fund from the Deanship of Scientific Research, University of Jordan, Jordan.
