Abstract
Abstract
Background:
Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease.
Objective:
To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities.
Design:
Descriptive survey.
Setting/Subjects:
Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings.
Measurements:
Palliative care needs assessment.
Results:
Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly.
Conclusions:
The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.
Introduction
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Approximately 80% of patients requiring palliative care live in low- and middle-income countries; 96% are adults, the remainder children. 3 Although childhood cancers are not among the six leading causes for palliative care, 98% of all children needing palliative and end-of-life care belong to low- and middle-income groups. The highest rates for children needing palliative care for cancer are in eastern Mediterranean countries (WHO-EMRO region). 4
While relative overall cancer survival rates are greater than 60%, in less developed countries it is only 30%−50%. 5 The International Agency for Research on Cancer reported that the percentage of patients dying of cancer in 2012 varied between developed countries (40.4%) and developing countries (66.4%). 6 Palliative care needs of a population can be estimated by number of deaths, a valuable reference for service planning and development. 7
The Middle East comprises countries from North Africa and Central Asia. This region includes a wide range of economically diverse countries, from technically advanced societies with high-level cancer care 8 to communities with little or no cancer treatment capabilities. Large differences in population size, wealth, health expenditure, treatment availability and quality, and palliative care services exist. A sociocultural, ethical, and religious approach is crucial when considering palliative care in the Middle East because religious observance and community support can be decisive in the palliative care approach.
To further elucidate palliative care services in the Middle East, a palliative care needs assessment examined health care professionals' awareness and beliefs about palliative care services and identified country-specific views and recommendations. Findings will be used to inform future educational and training activities.
Methods
A descriptive survey was used to collect data from a convenience sample of health care professionals in 15 Middle Eastern countries. The needs assessment was e-mailed to 46 health care professionals who solicited at least 15 colleagues in their respective countries to complete the survey. No individual identifiers were listed on the surveys. This proposal was reviewed by the Institutional Review Board (IRB) at the TAWAM Hospital in Abu Dhabi affiliated with the Abu Dhabi Health Services Company (SEHA). Because it was considered an initial baseline survey asking for current service levels and did not collect patient or staff identifiers, it did not require IRB approval.
Palliative care needs assessment instrument
This palliative care needs assessment developed and tested in U.S. rural hospitals in 7 Rocky Mountain states was adapted for use in the Middle East. 9 In 2013, an expert panel consisting of Middle Eastern palliative care physicians, nurses, and other interdisciplinary health care professionals from 15 countries attending the Middle East Cancer Consortium (MECC)/Oncology Nursing Society (ONS) conference in Muscat, Oman, suggested revisions to the published needs assessment, appropriate to palliative care delivery models in their region. The questionnaire, based on an extensive literature review of previously developed needs assessment instruments assessing palliative care provision, was translated from English into Turkish by forward translation by bilingual medical and nursing professionals, then backward professional translation.
The six-page instrument includes quantitative and open-ended questions addressing six areas: current palliative care services; satisfaction with and barriers to palliative care provision and service delivery (including physical care and psychosocial, emotional, cultural, and spiritual support); available resources; populations requiring assistance; educational program topics attended in the past 2 years; and preferred learning methods. Respondent characteristics were examined: work setting, city and country, professional background, years of experience, frequency of caring for patients with advanced illness, and approximate number of patients personally cared for in the past year who have died. Several questions asked about palliative care topics respondents would like to learn more about, how they wished to receive that material, and resources needed to attend a palliative care course.
Global palliative care mapping
To examine palliative care development globally, a classification system, developed and refined using a four-part typology, was used to evaluate responses to various needs assessment questions.
10
Countries participating in our survey belong to the following groups:
• Group 1: No known hospice–palliative care activity (Yemen [6.6%]). • Group 2: Capacity-building activity (Oman, Palestinian Authority [13.2%]). • Group 3a: Isolated palliative care provision (Egypt, Iraq, Iran, Lebanon, Morocco, Pakistan, Saudi Arabia, United Arab Emirates [53%]). • Group 3b: Generalized palliative care provision (Cyprus, Jordan, Turkey [20%]). • Group 4a: Hospice–palliative care services are at a stage of preliminary integration into mainstream service provision (Israel [6.6%]). • Group 4b: Hospice–palliative care services are at a stage of advanced integration into mainstream service provision (no Middle Eastern countries).
Data analysis
Quantitative survey items and demographics were summarized with descriptive statistics (means, standard deviations, and percentages) and compared across countries using tests of difference (analysis of variance with Tukey's post hoc test comparison). Associations and relationships between variables were assessed using correlation and linear regression. A backward elimination procedure was used to identify significant predictors. Significance was defined as p<0.05. SPSS version 22 (IBM, Inc. Armonk, NY) and SAS version 9.2 (SAS Institute, Cary, NC) were used for all analyses. Missing data were omitted from each calculation. Open-ended responses were analyzed using content analysis. The team combined the responses into thematic groups, reconciling rival explanations until consensus was achieved. 11
Results
Demographic characteristics
Of 46 health care professionals contacted in various countries, 36 participated (response rate, 78.2%) returning 776 usable questionnaires from 15 Middle Eastern countries (Table 1). The average respondent had 14.05 years (standard deviation [SD]±9.33) of professional experience, frequently cared for patients with advanced, life-threatening illness (M=1.99; SD±0.89) (0=never, 1=sometimes, 2=frequently, and 3=always), and personally cared for 41.6 patients (SD±73.31; range, 1–500; n=439) in the past year who had died. Most of the respondents were nurses (44.3%) and physicians (38.3%); the remaining (17.4%) were psychosocial, academic, and other health care professionals. They were employed in primary health care institutions (34.8%), secondary health care institutions (21.6%), tertiary, cancer, and palliative care settings (12.2%), educational institutions (28.5%), and other settings (2.9%).
Eliminated from further analysis (except for Table 5) due to small sample size in each country group.
Percentages may not total 100% due to rounding.
Palliative care services
When asked about familiarity with palliative care, 695 respondents (M=1.54; SD±0.58) stated that they were very familiar (58%) or somewhat familiar (38%) on a 0–2 scale. Using a 0–3 scale, respondents believed that health care professionals are able to recognize the active dying process (M=1.80; SD±0.83; n=701); once a patient is identified as dying, staff is comfortable knowing what to do for the patient (M=1.69; SD±0.84; n=753); palliative care is integrated into the care plan of seriously ill patients in their setting (M=1.47; SD±0.97; n=753); and respondents are comfortable talking about limited prognosis with patients and families (M=1.65; SD±0.92; n=754). These four items were generally correlated with one another (Spearman correlation coefficient=0.33–0.61; p<0.0001). The strongest correlation was between staff's comfort knowing what to do for the dying patient and integrating palliative care into the care plan for seriously ill patients. The most common existing palliative care service offered was having a pain management consultative team (Table 2). Offering advance care planning, staff support in caring for the dying, and bereavement programs were less common.
More than one response may have been recorded by each respondent.
n (%)=number and percentage of participants who responded in the affirmative that they had the following palliative care services available in their setting.
Palliative care satisfiers and barriers
When asked about satisfaction with palliative care delivery in their setting, health care professionals were most satisfied with pain (M=2.04; SD±0.89; n=761) and symptom management (M=1.94; SD±0.89; n=761) and least satisfied with discussions around advance directives (M=1.19; SD±0.98; n=749). Varying degrees of correlations among items were observed. For example, there was a strong correlation between two items: goals of care for patients with advanced illness, and patients are informed about different care options (Spearman correlation coefficient=0.66; p<0.0001).
An extensive list of possible barriers to providing palliative care was rated (Table 3). The top five barriers recognized included lack of: community awareness about palliative care, designated beds for palliative care services, training for staff related to palliative care, access to hospice services, and personnel and time. Unavailability of medications/opioids and health care professional fear of causing addiction by administering pain medications were the least perceived barriers.
0=not at all; 1=somewhat; 2=severe barrier.
SD, standard deviation.
Existing program strengths and available resources
Individual responses (n=420) to a qualitative question, “Please tell us what your setting is doing well to provide palliative care,” fell into five themes: palliative care services available, palliative care team attributes, professional education, patient-focused care, and political and external facilitators. Regarding palliative care services, the greatest strengths were availability of inpatient palliative care beds, interdisciplinary palliative care and pain teams in Cyprus, Israel, Turkey, Lebanon, and Jordan. Additional strengths were having home-based palliative care services in Cyprus and Israel. Palliative care team attributes were characterized by high-quality nursing care, teamwork, and passion (9/15 countries). Third, provision of professional education was mentioned by respondents in 13 of 15 countries. Components of quality patient-focused care were frequently noted: good pain management and psychological care (11/15 countries), symptom management and holistic care (10/15 countries), and family/caregiver support (7/15 countries). When asked about any particular patient populations with whom more assistance was needed, 57% indicated three specific groups: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly.
Learning about palliative care: educational topics and methods
Eighty-six percent of respondents wished to learn more about palliative care, and 90% believed their clinical staff would like to learn more about the topic. Seventy-six percent (n=587) recalled attending a palliative care professional educational session in their work setting in the past 2 years; common topics were pain/symptom management and communication skills. Twenty-four percent (n=182) had not attended a session or one had not previously been offered.
When asked, “What specifically would you like to learn?” (n=349; multiple responses possible), frequent themes included: psychosocial issues including communicating with patients and families about prognosis and care; models of care, program development, team education, how to finance a palliative care team; death and dying, end-of-life care, grief and bereavement; and pain/symptom management including complementary alternative modalities (CAM) and medications.
Respondents were asked how they would like to learn about palliative care, identifying various modalities. They favored attending a professional meeting or workshop and integrating palliative care information into academic nursing or medical programs. The teaching modality least likely to be used was Web-based learning as 13% had no internet availability. When offering a palliative care educational class/course, having administrative support, financial resources, and location/proximity to home were the top three needs.
Mapping Middle Eastern palliative care using analysis of variance and linear regression
Several variables were considered for comparison across country groupings. Significant differences were found for all variables (Table 4); generally following the order of the typology described by Lynch and colleagues, 10 with few exceptions. Compared with Israel, other country groups scored lower in satisfaction with pain management provision.
AD, advance directive; NS, not significant and dropped from the model.
—Reference group(s)
Adjusting for provider type and work setting, the differences largely persist with R2 ranging from 0.05–0.14 (Table 4). For example, physicians, in general, and health care providers employed in tertiary, cancer center, and palliative care settings were more comfortable talking about limited prognosis with patients and families than other provider types (including registered nurses) and health care providers in other settings.
Adjusting for provider type and work setting, providers in Israel were more comfortable talking about limited prognosis. Alternatively, physicians were less able to recognize the active dying process; and providers in countries with isolated hospice–palliative care provision (Group 3a) were less able to recognize dying than those in Palestine (Group 2).
Compared with Israel, Cyprus, Jordan, and Turkey, advance directives were less often addressed with patients and families in all other countries. Patients were informed about different care options in line with their goals of care more often by physicians; in tertiary care, cancer center, and palliative care settings; and in Israel, Cyprus, Jordan, and Turkey. On the other hand, compared with Israel and all other countries, Yemen scored highest in satisfaction with the provision of spiritual care, adjusting for work setting.
Discussion
Integration of palliative care into Middle Eastern countries
It has been consistently argued that in most developing countries patients diagnosed with terminal cancer must confront their mortality alone and in pain because palliative care is virtually nonexistent in poorer nations. 12 It was encouraging to learn that in the present survey health care professionals were familiar with the palliative care concept. This is an important first step in facilitating cancer palliation in this part of the world. The majority of respondents indicated that the most common existing palliative care services are related to pain management. Yet, the most recent survey of the Pain & Policy Studies Group, 13 documented that mean consumption of opioid drugs in Middle Eastern countries is 10.562 mg/capita as compared to the global mean of 61.66 mg/capita; 6 times less than the global mean (Table 5). Physicians and the public are concerned about addiction and the illicit use of morphine, resulting in decreased opioid prescribing and consumption. 14 Opioids are not universally available in the Middle Eastern region. While opioid consumption has increased in Middle Eastern countries since 1999, opioid use is still less than 10% of the anticipated Adequacy of Consumption measures for opioids. 15 Israel is the only exception. So how are pain and symptoms managed?
Eastern Mediterranean region.
Available at 2011 global, regional, and national opioid consumption statistics, Pain & Policy Studies Group, University of Wisconsin Carbone Cancer Center.
In many Middle Eastern countries, symptom management of mild cancer pain is controlled with nonpharmacologic therapy alone while moderate to severe pain appears to be controlled using multimodal therapy including the usage of nonsteroidal anti-inflammatory drugs, limited doses of injectable opioids, and CAM. 16
Palliative care educational needs for health care professionals
An important lesson learned from this survey is that 86% of Middle Eastern health care professionals wish to acquire additional knowledge about palliative care to ensure a change in attitude and practice. This differs from U.S. rural hospital needs assessment results that found only 46% of health care professionals wanted to learn more about palliative care. 9 This discrepancy may indicate that Middle Eastern health care professionals recognize the need for palliative care given that cancer diagnosis is often delayed and disease is advanced. Continued education and training is critical and timely, as is advocacy for palliative care practices. 17 Discrepancy between knowledge and practice is evident; 70% of oncologists in Qatar are aware of pain management guidelines but only 60% incorporate them in practice. 18 In recent years more countries have commenced palliative care training in the region, focusing on pain management. 19
When considering the development of a palliative care educational program/initiative for all Middle Eastern health care providers, priority focus areas include: psychosocial and communication strategies specifically focusing on end-of-life communication. While physicians were more comfortable talking about limited prognosis with patients and families, nurses and others would benefit from this education. Additionally, an introduction to palliative care is necessary for many community professionals. It would be helpful to review models of delivery, how to develop a program and team, and financial aspects of care provision. Pain and symptom management education should assimilate CAM therapies and various medications that will impact quality of life and increase functionality. Since hospice is in its infancy in many Middle Eastern countries, a focus on death and dying, care at the end of life, and developing grief and bereavement programs would be helpful.
Future directions for improving pain and palliative care services in the Middle East
A significant finding suggests that the community is pivotal to any future plans for developing palliative care services in individual countries as the larger majority of Middle Eastern patients with cancer are treated in the community setting. Oncologists, along with general practitioners, family physicians, and community nurses in rural areas, are often alone on the frontlines caring for patients. In most Middle Eastern countries limited numbers of oncologists and palliative care specialists exist, whereas, the number of patients with cancer is increasing steadily. Furthermore, development of communication skills among practicing individuals across the community is needed. Only 50% and 20% of respondents attended educational programs aimed at fostering communication skills and dealing with community health resources, respectively. In several countries, community services have been successfully developed; ensuring home-based treatment and support are provided along the cancer continuum with better coordination among primary care and other health care agencies. The current lack of functioning hospice and home-based services leaves families and providers unable to honor patients' wishes. 20
Another salient theme that emerged is the need for extra assistance when caring for geriatric and pediatric oncology patients. In the Middle East, the problem with geriatric oncology is not lack of knowledge about palliative care but failure to put it into practice. 21 It is imperative that regional regulatory agencies evolve to support the delivery of high-quality palliative care to a growing elderly population in the Middle East suffering from cancer. 22 Most Middle Eastern countries, similar to other low- and middle-income countries, have younger populations and, therefore, a larger proportion of children with cancer than high-income countries. MECC has recently initiated training activities involving pediatric oncologists in seven Middle Eastern countries. 23 The current regional survey supports creating a nucleus of local advocates to further disseminate knowledge and first-hand experience of cancer care generally and cancer palliative care in particular. 24
One proposed way to monitor future growth of palliative care in the region is through continued mapping of palliative care services development on a country-by-country basis, as many have recently instituted various care delivery models to facilitate palliative care services, including home and hospice care. Based on our experience, Cyprus, Israel, Turkey, and Lebanon have made the most significant gains in the past 7 years.
Limitations
Survey limitations include the use of a convenience sample; surveying health care professionals, not patients; an absence of data from some Middle Eastern countries: Syria, Libya, Qatar, Algeria, and Tunisia; and scarce data from others: Morocco and Oman. In addition, the needs assessment was only translated into Turkish. Had it been translated into Arabic, participation may have been increased. Some of the questions were ordinal in format but were treated as continuous variables in the analysis.
Conclusions
The majority of respondents in the present survey believed palliative care education is a high priority along with governmental policies. An additional key issue is disclosure, as in most Middle Eastern countries, informing cancer patients of their diagnosis and prognosis is prohibited or strongly discouraged. Culture plays a significant role in how patients and families interpret illness and suffering, expression of pain, and views concerning death. 25 While Western health culture places a high value on individual autonomy and full disclosure of information to the patient, this is neither universal nor shared by the majority of Middle Eastern people. The latter barriers comprise psychological, social, and cultural elements limiting access to palliative care. Future achievements rely on the involvement of communities in caring for their members. 26
Footnotes
Acknowledgments
Funding was provided by MECC. Ronit Esther, MECC coordinator, is acknowledged for assistance with data collection and manuscript formatting. ONS leaders Barbara Lubejko, RN, MS, Project Manager/Education Team and Nurse Peer Review Leader/Approver Unit and Kate Shaughnessy Hankle, MBA, CVA, Management of International and Leadership Development are acknowledged for their assistance with survey revision and qualitative data analysis.
Author Disclosure Statement
No competing financial interests exist.
