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Evaluating Palliative Care Needs in Middle Eastern Countries

Article  in  Journal of Palliative Medicine · January 2015

DOI: 10.1089/jpm.2014.0194

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Evaluating Palliative Care Needs in Middle Eastern Countries

Michael Silbermann, DMD, PhD, 1

Regina M. Fink, RN, PhD, AOCN, FAAN, 2

Sung-Joon Min, PhD, 3

Mary P. Mancuso, MA, 2

Jeannine Brant, PhD, APRN, AOCN, 4

Ramzi Hajjar, MD, 5

Nesreen Al-Alfi, RN, MSN, 6

Lea Baider, PhD, 7

Ibrahim Turker, MD, 8

Karima ElShamy, DNSc, 9

Ibtisam Ghrayeb, RN, MSN, 10

Mazin Al-Jadiry, MD, 11

Khaled Khader, RN, PhD, 12

Sultan Kav, RN, PhD, 13

Haris Charalambous, MD, 14

Ruchan Uslu, MD, 15

Rejin Kebudi, MD, 16

Gil Barsela, MD, 17

Nilgün Kuruku, MD, 18

Kamer Mutafoglu, MD, 19

Gulsin Ozalp-Senel, MD, 20

Amitai Oberman, MD, 21

Livia Kislev, RN, MA, 22

Mohammad Khleif, RN, MSN, 23

Neophyta Keoppi, RN, 24

Sophia Nestoros, MD, MPall, 24

Rasha Fahmi Abdalla, MD, 25

Maryam Rassouli, RN, PhD, 26

Amira Morag, RN, MA, 27

Ron Sabar, MD, MBA, 28

Omar Nimri, MD, 29

Mohammad Al-Qadire, RN, PhD, 30

Murad Al-Khalaileh, RN, PhD, 31

Mona Tayyem, RN, MSN, 32

Myrna Doumit, RN, PhD, 33

Rehana Punjwani, RN, 34

Osaid Rasheed, RN, MSN, 35

Fatimah Fallatah, RN, 36

Gulbeyaz Can, RN, PhD, 37

Jamila Ahmed, DPsy, 38

and Debbie Strode, RN, MSN 39

1 Middle East Cancer Consortium, Technion–Israel Institute of Technology, Haifa, Israel.

2 University of Colorado Hospital, Aurora, Colorado.

3 University of Colorado, School of Medicine, Aurora, Colorado.

4 Billings Clinic, Billings, Montana.

5 American University of Beirut, Beirut, Lebanon.

6 Fatima College for Health Care/Sciences, Abu Dhabi, United Arab Emirates.

7 Assuta Medical Center, Tel Aviv, Israel.

8 Dr. Abdurrahman Yurtaslan Oncology Training and Research Hospital, Ankara, Turkey.

9 Faculty of Nursing, Mansoura University, Mansoura, Egypt.

10 Makassed Charitable Hospital, East Jerusalem.

11 Children Welfare Teaching Hospital University of Baghdad, Baghdad, Iraq.

12 Taif University, Saudi Arabia.

13 Baskent University, Ankara, Turkey.

14 Bank of Cyprus Oncology Centre, Nicosia, Cyprus.

15 Ege University School of Medicine, Tulay Aktas Oncology Hospital, Izmir, Turkey.

16 Cerrahpasxa Medical Faculty Istanbul University, Istanbul, Turkey.

17 Division of Oncology, Rambam Health Care Campus, Haifa, Israel.

18 Ankara Oncology Training and Research Hospital, Ankara, Turkey.

19 The Oncology Center, Dokuz Eylul University, Izmir, Turkey.

20 Ankara Oncology Education and Research Hospital, Ankara, Turkey.

21 Poria Medical Center, Tiberias, Israel.

22 Israel Cancer Association Givatayim, Israel.

23 Al-Sadeel Society for Palliative Care, Bethlehem, West Bank, Palestinian Authority.

24 Cyprus Anti-Cancer Society, Nicosia, Cyprus.

25 El-Salam Oncology Center, Cairo, Egypt.

26 School of Nursing & Midwifery, Shahid Beheshti University of Medical Sciences, Teheran, Islamic Republic of Iran.

27 Davidoff Cancer Center, Rabin Medical Center, Beilinson Campus, Petach Tikva, Israel.

28 Sabar Clinics for Community Health Services, Israel.

29 Jordan Cancer Registry, Ministry of Health, Amman, The Hashemite Kingdom of Jordan.

30 Al-Ghad International College for Health Sciences, Riyadh, Saudi Arabia.

31 Al-Bayt University Faculty of Nursing, Mafraq, The Hashemite Kingdom of Jordan.

32 Faculty of Nursing, Jordan University of Science and Technology, Irbid, The Hashemite Kingdom of Jordan.

33 Alice Ramez Chagoury School of Nursing, Lebanese American University, Beirut, Lebanon.

34 Children’s Cancer Hospital, Karachi, Pakistan.

35 Al-Ahli Hospital, Hebron, West Bank, The Palestinian Authority.

36 King Abdul Aziz Medical City, Jeddah, Saudi Arabia.

37 Istanbul University Florence Nightingale Hemsirelik Fakultesi, Istanbul, Turkey.

38 Faculty of Medicine, University of Aden, Aden, Yemen.

39 Tawam Hospital, Abu Dhabi, United Arab Emirates.

Accepted August 28, 2014.

JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number 1, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0194

1

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 con- sideration 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 com- munity 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

Cancer is a global issue. Its impact is devastating, butespecially so for poor, vulnerable, and socially disad- vantaged people who are more often diagnosed with ad- vanced disease and die sooner.

1 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.

2 While progress has been

made in cancer diagnosis and treatment, much remains to be done to improve palliative care, which has emerged as an important subspecialty in high-income countries. The expand- ing need for palliative care is now recognized, both medically and geographically, with the Worldwide Palliative Care Al- liance recommending that governments integrate palliative care into each country’s health care system.

3

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 chil- dren needing palliative care for cancer are in eastern Medi- terranean 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 coun- tries (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 eco-

nomically diverse countries, from technically advanced so- cieties with high-level cancer care

8 to communities with little

or no cancer treatment capabilities. Large differences in population size, wealth, health expenditure, treatment avail- ability and quality, and palliative care services exist. A so- ciocultural, ethical, and religious approach is crucial when considering palliative care in the Middle East because reli- gious 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 recom- mendations. Findings will be used to inform future educa- tional 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 in- dividual 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 ser- vice 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

2 SILBERMANN ET AL.

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 Con- sortium ( MECC)/Oncology Nursing Society (ONS) confer- ence in Muscat, Oman, suggested revisions to the published needs assessment, appropriate to palliative care delivery models in their region. The questionnaire, based on an ex- tensive literature review of previously developed needs as- sessment instruments assessing palliative care provision, was translated from English into Turkish by forward translation by bilingual medical and nursing professionals, then back- ward 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; edu- cational 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 respon- dents would like to learn more about, how they wished to receive that material, and resources needed to attend a pal- liative care course.

Global palliative care mapping

To examine palliative care development globally, a clas- sification 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 (Cy- prus, Jordan, Turkey [20%]).

� Group 4a: Hospice–palliative care services are at a stage of preliminary integration into mainstream ser- vice 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 sum- marized with descriptive statistics (means, standard devia- tions, 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 regres- sion. 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, recon- ciling 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%).

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

Table 1. Respondents by Country

Respondents Number of participating

Country n % institutions

Cyprus 62 8.0 2 Egypt 51 6.6 2 Iran 16 2.1 10 Iraq 31 4.0 15 Israel 143 18.5 20 Jordan 75 9.7 10 Lebanon 50 6.5 13 Morocco

a 2 < 0.01 2

Pakistan 16 2.1 8 Palestinian Authority 66 8.5 10 Saudi Arabia 16 2.1 23 Sultanate of Oman

a 1 < 0.01 1

Turkey 187 24.2 52 United Arab Emirates 45 5.8 7 Yemen 15 1.9 2 Total 776 100.0

b 177

a Eliminated from further analysis (except for Table 5) due to

small sample size in each country group. b Percentages may not total 100% due to rounding.

PALLIATIVE CARE NEEDS IN THE MIDDLE EAST 3

(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 com- fortable 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 cor- relation 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 pro- grams were less common.

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 man- agement (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 be- tween 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 pallia- tive 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.

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 edu- cation, patient-focused care, and political and external fa- cilitators. 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 com- munication skills. Twenty-four percent (n = 182) had not at- tended 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 in- cluded: 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 includ- ing complementary alternative modalities (CAM) and med- ications.

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 avail- ability. When offering a palliative care educational class/ course, having administrative support, financial resources, and location/proximity to home were the top three needs.

Table 2. Existing Palliative Care Services (n = 773)a

Palliative care services n %

Pain management consultative team or service

552 72.2

Quality improvement for pain manage- ment

473 62.2

Quality improvement for symptom management

435 57.2

Discharge planning for patients with chronic illness

420 55.4

Palliative care team or consult service 417 54.7 Ethics committee 335 44.1 Quality improvement for end-of-life care 323 42.4 Palliative care unit 316 41.4 Interdisciplinary care program for dying

patients 306 40.1

Nurses who are certified in hospice and palliative nursing

276 36.0

Professional education program on palliative care

274 35.7

Contractual relationship with one or more hospice programs

265 34.9

Program to promote advance care planning (advance directives)

203 26.9

Program for staff support in caring for dying patients

199 26.0

Bereavement program 146 19.4

a 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.

4 SILBERMANN ET AL.

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 ty- pology described by Lynch and colleagues,

10 with few ex-

ceptions. Compared with Israel, other country groups scored lower in satisfaction with pain management provision.

Adjusting for provider type and work setting, the differences largely persist with R

2 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 progno- sis. 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, ad- vance 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 pal- liative care settings; and in Israel, Cyprus, Jordan, and Tur- key. 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 en-

couraging 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 indi- cated 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 de- creased 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 opi- oids.

15 Israel is the only exception. So how are pain and

symptoms managed? 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 in- jectable 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

Table 3. Barriers to Providing Optimal Palliative Care

Barrier n Mean (SD)

Lack of community awareness. 758 1.48 ( – 0.67) Lack of designated palliative care beds. 742 1.48 ( – 0.68) Lack of staff training in palliative care. 756 1.41 ( – 0.68) Lack of access to hospice services. 743 1.35 ( – 0.73) Personnel shortages and time constraints. 754 1.34 ( – 0.65) Lack or inadequacy of written policies and procedures about palliative care. 748 1.31 ( – 0.74) Lack of home care availability. 758 1.28 ( – 0.73) Lack of volunteers in community. 747 1.28 ( – 0.73) Patients’/families’ avoidance of issues around dying. 759 1.19 ( – 0.64) Lack of knowledge about palliative care by health care professionals. 761 1.17 ( – 0.63) Differences in opinion among health care professionals about palliative care. 752 1.16 ( – 0.65) Communication difficulties among health care professionals, patients, and/or families. 754 1.12 ( – 0.66) Cultural, religious, and/or spiritual beliefs influencing end-of-life care. 757 1.12 ( – 0.70) Health care professionals’ personal discomfort with death. 758 1.04 ( – 0.64) Patients’/families’ fear of addiction to pain medications. 757 1.03 ( – 0.65) Improper communication among interdisciplinary team. 757 1.01 ( – 0.69) Fear of legal action by leadership or government. 752 0.96 ( – 0.75) The patient/family is not part of the decision-making process. 754 0.91 ( – 0.72) Health care professionals’ fear of causing addiction by administering pain medications. 758 0.80 ( – 0.69) Lack availability of medications/opioids (narcotics). 752 0.73 ( – 0.77)

0 = not at all; 1 = somewhat; 2 = severe barrier. SD, standard deviation.

PALLIATIVE CARE NEEDS IN THE MIDDLE EAST 5

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6

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 ad- vanced. Continued education and training is critical and timely, as is advocacy for palliative care practices.

17 Dis-

crepancy between knowledge and practice is evident; 70% of oncologists in Qatar are aware of pain management guide- lines but only 60% incorporate them in practice.

18 In recent

years more countries have commenced palliative care train- ing in the region, focusing on pain management.

19

When considering the development of a palliative care edu- cational program/initiative for all Middle Eastern health care providers, priority focus areas include: psychosocial and com- munication strategies specifically focusing on end-of-life com- munication. While physicians were more comfortable talking about limited prognosis with patients and families, nurses and others would benefit from this education. Additionally, an in- troduction 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 piv- otal 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 palli- ative 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 commu- nication 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 on- cology 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 experi- ence 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 sam- ple; surveying health care professionals, not patients; an ab- sence 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 contin- uous variables in the analysis.

Conclusions

The majority of respondents in the present survey believed palliative care education is a high priority along with gov- ernmental policies. An additional key issue is disclosure, as in most Middle Eastern countries, informing cancer patients

Table 5. 2011 Opioid Consumption in Middle Eastern Countries Compared to Global Use

Country Total morphine equivalence

(milligrams per capita)

Cyprus 35.084 Egypt 0.956 Iran 78.183 Iraq 0.125 Israel 154.836 Jordan 6.694 Lebanon 4.912 Morocco 1.169 Pakistan 0.018 Palestinian Authority Not reported Saudi Arabia 4.301 Sultanate of Oman 3.908 Turkey 12.220 United Arab Emirates 3.419 Yemen 0.150 EMRO

a region (mean) 10.562

United States 749.786 Canada 812.186 Germany 395.580 Global (mean) 61.660

a Eastern Mediterranean region.

Available at 2011 global, regional, and national opioid con- sumption statistics, Pain & Policy Studies Group, University of Wisconsin Carbone Cancer Center.

www.painpolicy.wisc.edu/opioid-consumption-data

PALLIATIVE CARE NEEDS IN THE MIDDLE EAST 7

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 uni- versal nor shared by the majority of Middle Eastern people. The latter barriers comprise psychological, social, and cul- tural elements limiting access to palliative care. Future achievements rely on the involvement of communities in caring for their members.

26

Acknowledgments

Funding was provided by MECC. Ronit Esther, MECC coordinator, is acknowledged for assistance with data collec- tion 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 sur- vey revision and qualitative data analysis.

Author Disclosure Statement

No competing financial interests exist.

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Address correspondence to: Regina M. Fink, RN, PhD, AOCN, FAAN

University of Colorado Hospital University of Colorado, College of Nursing

PO Box 6510-901 Aurora, CO 80045

E-mail: [email protected]

8 SILBERMANN ET AL.

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