Middle East Cancer Consortium—Development of Palliative Care Services for Cancer Patients

Abstract

When patients are diagnosed with cancer, they lose the mode of living they have been accustomed to and face difficulties in coping with the new complexed medical condition. In the case of advanced stages of cancer, patients lose the ability to take an active role in decisions related to priority in treatment modality, decision-making, and planning. In addition, these patients lose the ability of choice—to agree to a certain mode of treatment, who will treat them, and where. Thus, these kinds of decisions are between family members and the treating team. This can happen only when both the formal caregivers and to lesser degree the informal partners are exposed to ongoing educational activities and training by both local experienced palliative care experts and international initiated courses (both frontal and remote). This article provides recommendations needed for an effective strategy at national levels to develop appropriate ways, whereby governmental agencies and non-governmental organizations can promote the establishment of palliative care services at all levels from primary to tertiary in each individual country. The basis for the above will rely on the experience that was gained through the application of palliative care principles.

Introduction

The Middle East Cancer Consortium (MECC) was launched in Geneva in 1996 through an agreement signed by the ministers of health of Cyprus, Jordan, Israel, and Egypt and by the deputy minister of the Palestinian Authority. Turkey officially joined the Consortium in 2004. The goal of this new intergovernmental organization was to increase the knowledge and decrease the burden of cancer in the Middle East. The MECC linked cancer research and treatment to share expertise and reduce duplication and to maximize local and regional resources.

The MECC provides a unique mechanism to integrate financial and technical contributions of member states and other national and multilateral bodies and to increase trust and cooperation throughout the region in the common battle against cancer. Its objective is to promote cooperative activities that will:

1. Increase the ability of member countries to coordinate and conduct cancer surveillance;

2. Enhance the dissemination of cancer information from public education to professional training;

3. Improve public health, patient care, and quality control;

4. Facilitate international communication; and

5. Conduct research to improve cancer detection and survival.

During its early phase, the MECC succeeded in establishing a regional network of cancer registries (Freedman et al., 2006).

The MECC’s second regional project revolved around a response to the registries’ information aimed at building capacity for palliative care in the region. To do so effectively, it was necessary to establish a baseline of information on palliative care services in the jurisdictions covered by the MECC and to examine barriers to the delivery of palliative care that might exist. It became clearly apparent that there was an urgent necessity to expand and improve palliative care services for patients suffering from physical as well as psychosocial and spiritual distress as a result of a cancer diagnosis. The MECC began to address the issue of palliative care by organizing several regional training and educational activities aimed at capacity building (Bingley & Clark, 2008; Silbermann et al, 2007; Silbermann, 2008a,b, 2009, 2010b). Moreover, the MECC sought to build a consensus among its members to establish standards for palliative care services in the region. This sort of consensus building has been previously utilized within the MECC to develop standards for cancer registry that have enabled comparisons of cancer incidence rates in the region, as detailed in the monograph published by the National Cancer Institute (NCI).

Specifically, the current project intends to support, through single-country and multi-country activities (including exchanges of palliative care experts already started between Israel and the Palestinian National Authority), regional workshops and courses, the development and linkage of palliative care centers to track relevant information (focusing initially on pain management), and region-wide information dissemination efforts.

Background: The Development Problem, Proposed Response, and Rationale for Addressing the Problem in a Regional Context

The burden of cancer in the Middle East, in terms of both human suffering and its drag on national economies, is heavy. Current epidemiological data, based upon the International Strategic Plan Statistics, March 2008, indicated 100,000 deaths per year, of which 78,000 would benefit from palliative care. This is a strong incentive for countries to pool their resources toward a common goal. The MECC member countries join in peaceful cooperation to battle a universal disease and pledge to promote their mutual interests to improve palliative care services in both their hospital settings and their communities (hospices and home care services).

The ongoing demographic transition in the Middle East means a more elderly population and therefore increasing cancer incidence. Consanguineous marriages are common, leading to high rates of genetic disease, and it is known that some cancers have a strong familial background.

The MECC studies have revealed that the age-standardized rates (ASR) per 100,000 female breast cancer was high in Israeli Jews (93.1), comparable to that of the United States The Surveillance, Epidemiology, and End Results (US SEER) population (97.2). The other MECC populations had much lower rates (36.7–57.7). However, in Turkey, Egypt, Jordan, and the Palestinian Authority, 70% of all breast cancer patients were seen for the first time by a medical professional when the tumor was already at stage III or IV. In Israel, 46% of the Jewish patients were seen at these stages, whereas in the Arab Israeli population, 62.3% of breast cancer patients were seen for the first time at a late stage.

The current objective of the MECC is to develop and coordinate a regional network of palliative care services. The breast cancer findings clearly indicate the urgent need to develop educational programs for public awareness as part of an overall palliative care system. Health policymakers in the region now have basic epidemiological data to understand and respond to the need of developing palliative care services in their countries. At the same time, benefits from the experiences in Middle Eastern countries and populations could extend well beyond the Middle East. As already indicated above, public education in the Middle East has not reached a wide audience, and therefore cancer diagnosis is for the most part made at later stages, with direct consequences on viable palliative care services. A regional approach to a standardized palliative care system in the Middle East could generate significant benefits to patients, families, and healthcare systems.

Cancer patients in the Middle East are cared for in university hospitals, cancer centers, and general hospitals. The capabilities of the institutions vary enormously. Some centers, such as Hadassah University Hospital in Jerusalem, Israel, the Egyptian NCI in Cairo, Egypt, the King Hussein Cancer Center (KHCC) in Amman, Jordan, the Hacettepe University Hospital in Ankara, Turkey, and the Nicosia General Hospital in Cyprus, have reasonable to excellent facilities; yet, in most of them palliative care services are lacking. The main problem lies in the lack of well­ trained personnel and, to a lesser extent, the appropriate equipment. The free movement of health professionals (physicians, nurses, social workers, and psychologists) under the MECC maximizes cooperation and the effective use of scarce human resources in the region.

The MECC plans to empower Middle Eastern health institutions to operate in the development of:

1. national and regionally linked hospital and community-based palliative care services;

2. national educational programs (each country in its native tongue) related to early detection of symptoms, i.e., in cases of breast and colorectal cancers; and

3. programs to exchange residents and cancer experts to improve education, healthcare, and research capabilities. Exchanges are encouraged among member countries. The program has already started by sending health professionals to Calvary Hospital in New York, NY, and to Massachusetts General Hospital in Boston, MA.

The Technical Approach to Be Taken to the Problem and the Rationale for That Approach, Including Specific Objectives

A broad baseline of data is needed for policymakers to make sound decisions. Toward this end, the NCI commissioned the International Observatory on End­of-Life Care (based in Lancaster University, UK) to conduct a review on the current state of affairs in the MECC countries. It was evident that out of the six member states, two had a history of relatively sustained development of hospice and palliative care, but provision across the MECC region is highly variable at the local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support and a lack of awareness and understanding of palliative care needs at public government and professional levels. Key areas for further attention are increasing national and regional professional training and public education programs, improving opioid legislation and healthcare policies (Silbermann, 2010a, 2011). Further, there is an urgent need to negotiate for secure government or health insurance funding provision, to raise awareness about the need for pediatric services and for patients with other illnesses as well as those with cancer, and to work to integrate palliative care into mainstream health service provision and education (Silbermann, 2012a; Silbermann, Al-Hadad, et al, 2012).

In 2004, the MECC sponsored the first Middle Eastern workshop on Palliative Care in Larnaca, Cyprus. In 2005, the second workshop was carried out by NCI funds with the help of grants from the American Cancer Society, The Union for International Cancer Control (UICC), and the Cypriot Ministry of Health (MOH). In 2006, two training courses took place, one in East Jerusalem for Palestinians and one in Istanbul, mainly for Turkish health professionals. At the invitation of the Turkish and Cypriot Ministries of Health, the MECC organizes, every year, workshops and courses aimed at palliative care training in these two countries. In 2007, the Israeli Oncology Nursing Society (ONS), together with the US ONS, organized a regional course for palliative care nurses in Israel. In 2009, the MECC organized an advanced course in pain management for Palestinian professionals at the Shaare Zedek Hospital in Jerusalem. These pilot initiatives formed the basis for the MECC project, which is based on palliative care services and the sharing of these experiences for the benefit of health professionals and policymakers throughout the Middle East (Silbermann, Arnaout, et al, 2012).

A “Planning for Palliative Care Services in the Middle East” meeting was held by the MECC Palliative Care Steering Committee in January 2010 in Larnaca, Cyprus. Prior to the meeting, the representatives of Jordan, the Palestinian Authority, Israel, Cyprus, Turkey, Lebanon, and Saudi Arabia filled out situation analysis templates which were provided to them well ahead of time. The second Steering Committee meeting was planned for December 2010 in Larnaca, Cyprus. In that meeting, each country was requested to be represented by a team comprised of an oncologist, an oncology nurse, and a pharmacist. All the Ministries of Health were invited to send their representative(s) to the meeting. To regionalize the individual efforts in each country, common methods of treatment were agreed upon by adopting the International Network for Cancer Treatment and Research (INCTR) and the INCTR Palliative Care Handbook (2008), which was translated into Turkish.

Palliative Care Information Dissemination

The National Institutes of Health (NIH), NCI, UICC, and the ONS made available, free of charge, their information databases:

• EPEC-O (Education in Palliative and End-of-Life Care for Oncology, NIH, CD-ROM and DVD)

• Cancer Basics for All (International Union Against Cancer, PC CD-ROM)

• PPCS—Pain Assessment and Management, NIH

• Oncology Nursing Society Putting Evidence into Practice

• ONS Knowledge Case Studies, Crossword Puzzles and Glossary (CD-ROM discs).

Electronically accessible palliative care information was to be established in all MECC countries. All the centers would be linked through the internet.

The MECC Palliative Care Steering Committee agreed upon the potential next steps:

Situational Analysis/Needs Projections

• Facilitate completion in each country, merge colleagues, and compare and analyze data. Publish MECC situational updates and possibly help countries publish their individual stories. Therefore, each country’s (Egypt, Jordan, the Palestinian Authority, Israel, Cyprus, and Turkey) team should complete situation analyses review together to get agreement.

• Common language/concept (set stage for the development of consistent services).

• “One Voice”—develop common language, which is the concept of palliative care using Survey Monkey plus educational activities to develop a consensus. Therefore, each country’s team should participate in consensus-building process. Each country’s team should develop a wider network of stakeholders and encourage them to participate.

Strategic Planning

• Facilitate development and implementation of strategic plans (education, mentorship, and regular follow-up every quarter). Therefore, each country’s team should convene key stakeholders and develop country and organizational strategic plans (goals, developmental steps, and resources).

Policy

• Facilitate MOH engagement in each country such as site visits with regional and international leaders of MOH and organizational leaders (help with credibility) and access to information to guide policy changes. Therefore, each country’s team should identify key policymakers, create opportunities for site visits, follow-up to keep them engaged, and facilitate policy changes.

Drug Availability

• Facilitate drug regulator/law and enforce official participation in each country through site visits with regional and international MOH and organizational officials, as well as access to information to support policy changes. Therefore, each country’s team should identify important regulators and law enforcement authorities, arrange for site visits, maintain in touch to keep them engaged, and facilitate policy changes.

Education

• Sensitization education—EPEC: oncology-based 1-hour, half a day, and 3-day education sessions with evaluations supported by regional and international faculties. Therefore, each country’s team should identify key healthcare professionals (HCPs) who would benefit from palliative care education and create opportunities for educational events.

• Expert clinical skills education—Develop collaborative arrangements to enhance expert skill development through fellowship training, observerships, and the establishment of a regional educational resource/training center (like KHCC, Jordan). Therefore, each country’s team should identify key HCPs who will commit to implementing/providing palliative care expert services and ensure administrative support/funding for these HCPs to participate in education and implement expert palliative care services.

• Faculty development—Presentation skills, facilitation skills, mentorship skills, feedback skills, media skills, strategic planning program development skills, and leadership skills important to be faculty members. Therefore, each country’s team should identify palliative care experts who will commit to learn faculty development skills and become a trainer in their country.

• Specialty recognition—Each country’s team should help to facilitate recognition of palliative care/palliative medicine as a specialty.

Program Implementation/Quality Improvement

• Mentorship should be used to facilitate program creation, as well as the publication of standards/norms of practice, practice and treatment guidelines, documentation and data collection procedures, and outcome measurements and indicators.

Research

Develop a research/publication agenda for MECC and constantly think about application in similar cultural groups living in other countries. For example, some research/publication topics include the following:

• Culturally sensitive approaches for sharing information.

• Pain management in patients not consuming alcohol or other substances. Is there a difference in opioid usage for matched patients? The Edmonton Pain Risk assessment can be used.

• Issue screening in cancer centers (e.g., Interactive Symptom Assessment & Collection [ISAAC] system).

• Other symptom control, such as depression, delirium. Is there a difference between different cultural and religious groups?

• Does family function impact site of caregiving, site of death, financial impact of family, on individuals. Compare with SUPPORT findings.

Dissemination

• Enable a platform for presentation of results, e.g., European Association for Palliative Care, American Academy of Hospice and Palliative Medicine (experience will influence others). Could this be combined with expert training and MECC regional conferences?

Training and Exchange to Create a “Community of Middle East Palliative Care Professionals”

Over the past 20 years, the MECC enabled physicians, nurses, social workers, and psychologists from MECC countries to spend 2 weeks at Calvary Hospital in New York, NY: the leading End-of-Life Hospital in the USA. Every year, two professionals from each MECC country visit New York. The MECC started a new program with Massachusetts General Hospital and other Harvard-affiliated hospitals in Boston, MA, whereby an Israeli and Palestinian nurse spend 3 weeks together in Boston’s hospitals. The MECC also started a new program, whereby nurses and social workers from the West Bank, the Palestinian Authority, spend 1–2 weeks at the Davidoff Cancer Center, Beilinson Medical Center, Rabin Campus in Israel. Concomitantly, MECC is assisting Palestinian physicians to go through a residency program in oncology at the Rambam Cancer Center and the Schneider Children’s Medical Center. The MECC supports the trainees for 1–2 years, and thereafter, the residents are shifted to the hospital’s payroll.

Through these kinds of mechanisms, the MECC has been very instrumental in the establishment of the first Palestinian non-governmental organization, the Al-Sadeel Society for Palliative Care, which was officially registered in Bethlehem. Together with this new Society, the MECC organized, in November 3–6, 2009, an advanced course on pain management for caregivers from all over the West Bank. The MECC hopes to build on these activities to link institutions throughout Israel, the Palestinian Authority, and Jordan, as the first step prior to expanding the exchange program to additional countries. Understanding between clinicians working in one another’s clinics and laboratories will hopefully improve and with better understanding will come from mutual respect (Silbermann, 2013b).

Caregivers from less advanced institutions will surely benefit from hands-on training and clinical research experience in more advanced institutions. For example, no palliative care program exists in any Palestinian, Turkish, or Egyptian institution, nor in the majority of Jordanian or Cypriot facilities. Physicians, nurses, and social workers from the aforementioned nations receive training through the MECC in Israel and at the KHCC in Jordan. When they return, the new skills they have gained improve cancer treatment, care, and quality of life for cancer patients in their native countries.

The MECC builds upon the base of expertise already generated through local efforts augmented by NCI training programs. It funds exchanges of health professionals among Middle Eastern institutions and with the USA. It is MECC’s goal to support multi-country teams of palliative care trainers and experts for further training in MECC countries.

Institutional Arrangement/Management Approach

The MECC supported regional workshops and fellowships in the Middle East (Silbermann, 2012b,c, 2013a, 2015; Silbermann et al, 2015, 2016). Turkish oncologists come every year for a 1-month fellowship to the Rambam Radiotherapy Unit in Haifa, Israel. Palestinian pediatricians train at the Pediatric Oncology Department of the Meyer Children’s Hospital in Haifa, Israel. These activities, along with the MECC-sponsored national course and the MECC annual international palliative workshop in Cyprus and Turkey, lead to a great deal of goodwill among the participants and their respective institutions.

As the MECC grows toward full funding (by the Ministries of Health and other international agencies), a major objective is to expand visits and intra-regional travel, participant training in palliative care protocols and procedures, seminars, and other exchanges to more countries of the Middle East, such as Saudi Arabia, Lebanon, United Arab Emirates, Oman, Yemen, Iraq, Pakistan, Ethiopia, and North African countries. Further, the MECC is particularly interested in training more junior participants in order to increase understanding among caregivers in the region and expose junior people to senior experts from other countries.

In 2009, the MECC assisted two Jordanian nurses in pursuing their PhD studies in USA and UK graduate schools; whereby the theses of these studies will focus on topics directly related to palliative care for cancer patients. The MECC is also supporting M.Sc. and PhD students from Jordan and the Palestinian Authority in Cairo and Alexandria Universities, Egypt.

The Role of the US Institution and Sustainability

Sustainability of the proposed programs is guaranteed by financial contributions of MECC signatories. Additional contributions are expected from the American Cancer Society, the US ONS, UICC, Israel Cancer Society, the Turkish Health Hope Foundation (SUVAK), the Israel ONS, and others.

Summary: A Middle East Cancer Expert Community with Borders

The primary beneficiaries of the projects described above are the people of Egypt, Jordan, the Palestinian Authority, Israel, Cyprus, and Turkey and their governments. Patients have better care, especially in the later stages of their disease (Bar-Sela et al, 2019). Families get more attention and information about the condition of their sick relative (Tuncel Oğuz & Silbermann, 2021). Pain management is reinforced through legislation and education of the treating staff (Silbermann et al, 2022). At the same time, the caregivers become more aware of the need for and importance of psychological issues that involve the treating families (most of the cancer patients in the Middle East prefer to die at home). The MECC gives extra emphasis on the development of home care systems and advocates for volunteerism which so far is not practiced in most countries in the Middle East. The MECC facilitates capacity building of palliative care services in the Middle East (Ronald, n.d.; Silbermann & Berger, 2022).

“We should not limit our knowledge and experience to the dying alone but apply it to whoever needs it.” Moreover, Dr. Charles von Gunten keeps preaching that we should move away from the time that only a specialist could prescribe morphine, just as every physician can prescribe antibiotics, and that the hospital should not be the only place where we can offer comfort care but in the community as well. It is our conviction that more emphasis in our international courses should be placed on the role of palliative care in the community, especially in developing countries where hospices are still very rare and cancer centers usually operate only in the capital and other large cities.

The role of the nurse in promoting palliative care services in the community is critical, and accordingly special efforts should be given to nurses’ education and training in these countries. Nurses in the community serve as the genuine bridge between the physician, who often works in a remote hospital setting, and the patient and his/her family.

This special issue intends to spread the notion that in the twenty-first century palliative care and skills should be expected to be part of our routine medical practice, an integral part of standard care wherever it is. Nurses everywhere should advocate for this ideal to come true, since our job is to perceive medicine as more than a set of laboratory values and procedures related to an organ or a disease, but as a speciality that serves people beings who live and suffer as members of society.

This dire situation is one that MECC seeks to resolve by offering training and resources for oncology professionals. Through the development of palliative care programs and better communication between oncology professionals and patients, palliative care will become more widely accepted in the region. The MECC has helped initiate palliative care programs in many Middle Eastern countries. In many cases, these countries do not recognize each other, but it is not about religion or politics but rather about humanity, interpersonal relationships, peace, and setting aside prejudices. This is in all MECC’s mottos.

One of the biggest hurdles to overcome is a lack of communication and understanding of cultural and faith differences between providers and patients. The MECC trains oncology providers to have more open and ultimately more fruitful discussions with patients in the region. Prof. Silbermann offers the following suggestions on how oncologists can overcome cultural, faith, and communication barriers to provide the best possible care to their patients from the Middle East:

1. Become aware of any sensitivity. Start by listening to the patient’s concerns and asking questions about what he or she wants their cancer care to look like. “Personalized medicine isn’t just genetics,” and healthcare professionals should ask patients some personal questions so they can get to know their patients better and learn what barriers to care and treatment they may face.

   While the USA is a “death-denying” culture, other cultures have a different perspective on death. Patients should be given choices for mapping out their care, based on what gives their lives meaning. By gaining a better understanding of the cultural and religious beliefs of patients, oncology professionals may be able to offer alternative solutions while still respecting the patient’s customs and faith.

2. Involve the patient’s family. In the Middle East, it is not uncommon for families to know the diagnosis before the patients. In many cases, the family tries to shield the patient from their diagnosis and hides the disease from them. While this would be considered unethical in the USA, it demonstrates the importance of the family’s role in a patient’s treatment. Collective care involving the family is often paramount, so include the family, with the patient’s permission, whenever possible.

3. Provide resources and options, especially those that are family and community oriented. Some patients from the Middle East may be wary of Western medicine and may seek to rely more on the support of their family or religious community. One of MECC’s primary tasks is to build trust with communities and families. Oncology professionals should support their patient’s choices while helping to dispel misconceptions and advocating for the best care and treatment. Additionally, oncology professionals should provide resources and options for home care and help find community support groups for patients.

Table 1.

Issues Related to Individual Countries

Country	Issues Related to Individual Countries
Palestinian Authority	Government sensitization and engagement Sensitization education Team formation and education Resources for planning and implementation
Turkey	Identification of stakeholders and leaders Planning team formation—national and organizational Situation analysis—Izmir, other centers and country Sensitization education Site visit and engagement
Saudi Arabia	Staffing (Jeddah) Sensitization education Team education
Cyprus	Expert training—physicians and others Site visit to facilitate engagement with MOH, process to merge palliative care providers, and HCP education
Jordan	KHCC team consolidation—stable nurse turnover, expert education. Form a national group to revise opioid prescribing rules and regulations. A national physician/nurse education program on opioid prescribing is being planned. Plan for KHCC to be MECC Educational Resource Center
Israel	Site visit to facilitate engagement with MOH
Egypt	What is going on? What can be usefully done? Facilitate the development of organizational and national planning teams Begin expert education

Note: HCP, healthcare professional; KHCC, King Hussein Cancer Center; MECC, Middle East Cancer Consortium; MOH, Ministry of Health.