Palliative care is a new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, the Al-Sadeel Society organized a 1-day workshop in Bethlehem in November 2008 for the health professionals from the governmental and nongovernmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine.
The general population of Palestine is approximately 2.4 million (2007), with a life expectancy of 74.3 years; the death rate is 3.7 per 1000 population, having 8910 deaths a year. Deaths due to cancer were 2305 in 5 years (1999 to 2003), with 5542 new cases diagnosed in the same period.
Health services available for cancer patients are in hospital units, either inpatient or day care units. According to the Ministry of Health (MOH) statistics, there are 75 beds in oncology departments in MOH hospitals; 2.7% of the beds are unoccupied and 60 beds in daily care departments, with an occupancy rate at 231.8%.
There is no hospice or bereavement follow-up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, at the end of life, when the load of symptoms is high, most of the patients are cared for at hospitals, and usually die there, because the families are not able to care for the patients. There is no system for home care available for the Palestinian patients, and if it is, it is available in limited places and in private establishments that are expensive and not affordable to the majority of patients (gross domestic product per capita=$1100 as 2007 estimates).
We conducted a needs assessment survey within the only 4 facilities that provide care for oncology patients in the West Bank and were filled by the direct health care providers. The results showed that there is no palliative care service available for cancer patients or their families, absence of organizations strategic planning for palliative care, no presence of educational resources for palliative care, no presence of communication or consultation to the clergy man, absence of bereavement support group, no active follow-up for the patient and the family, no standards for palliative care service or training programs in palliative care, no home care service for palliative care, absence of community awareness for palliative care, and absence of national standard for palliative care.
Statistics showed 8106 new cancer cases (2000 to 2005) in the West Bank (with 948 cancer cases in Bethlehem district), with 3471 deaths. This is an indicator of the problem of high mortality rate among cancer patients in Palestine, which means that most cancer patients are diagnosed at the end stage of the disease.
Moreover, most of the cancer patients are diagnosed at the end stage of the disease (5550 cases) representing 68% of total cases, which means that they are terminally ill and at their end of life, the thing that means that those patients are not early detected and no more in need for curative care that is no more applicable for them, but indeed in need for palliative care to live comfortably and free of pain.
In contrast, as an example, there are 1113 breast cancer cases representing 27% of female cancers and 14% of total cases (the most common cancer among female), and this indicates the need for education and early detection for cancer (2000 to 2005, Palestinian National Cancer Registry).
Our idea is new to the cancer field in West Bank because the trend of care was to cure cancer patients rather than to educate and palliate, thus we plan to create a specialized organization in Palestine that should handle the issue of education on early detection and palliative care, and the need for being a part of the Palestinian health care system increased in its intensity.
Al-Sadeel Society is a nongovernmental organization, registered under law number 1 of Charitable Societies and nongovernmental Associations, 2000, by the Ministry of Interior of the Palestinian National Authority (PNA) under License Number ((BL-3262-M)). It was registered officially in May 2008, although currently its activities are based mainly in the Bethlehem area.
Al-Sadeel Society is the first and only registered Palliative Care Society in the PNA. The society's vision is that life is a gift from God, and therefore, it should be kept pain free as much as possible, using updated knowledge and skills. The society's activities are aimed to be free and affordable to patients who need them, and not only to those who are able to pay for them.
The mission of Al-Sadeel Society is to alleviate the pain and suffering of terminally ill cancer patients by providing professional nursing and palliative care along with care to the families by means of medical, social, emotional, and psychological approaches. By this, we plan to provide comfort until the end and to preserve the dignity of the suffering patient.
The strategic plan of Al-Sadeel Society is to create a home-based palliative care and hospice center. Moreover, the society plans to become the leading organization in the education and training of palliative and hospice care in the Bethlehem area and the PNA at large.
The overall goal for Al-Sadeel Society is to maintain quality of life (QOL) for the terminally ill cancer patient within the family. This can be achieved through:
- Spreading awareness among the public regarding the importance of early detection to decrease the burden of the disease on the community.
- Training of professionals and education of the caregivers and the public.
- Home-based hospice and palliative care and supplies availability.
- Psychosocial and emotional support for the patient and the family using support groups and survivor volunteers.
- Collaboration with other organizations in the field of cancer care.
- Developing projects related to palliative care services.
A needs assessment survey for Palliative care in West Bank hospitals was conducted by the society. Analysis proved the critical need for affording palliative care services all over West Bank districts. Therefore, we intended to start and appoint firstly at Bethlehem where most volunteers are from.
Bethlehem town is located 5 and half miles from Jerusalem. It has 176,235 inhabitants, half Moslems and half Christians. Beit Jala and Beit Sahour, 2 neighboring sister towns, have 13,000 and 12,000 inhabitants, respectively. Indeed, illiteracy percentage in Bethlehem compared with the total governorates in West Bank equals 5.7%, whereby 190 inhabitants in Bethlehem of 1730 from all West Bank districts have finished diploma study or higher in Life Science programs in addition to 1760 of 16,680 inhabitants have diploma or higher study in health programs. Of Bethlehem's inhabitants 38,481 are employed, of which 1736 inhabitants work in health and social sectors and 3961 inhabitants work in education department (Palestinian Central Bureau of Statistics, 2008) (http://www.pcbs.gov.ps).
Beit Jala Governmental Hospital is considered one of the major oncology hospitals located in the Bethlehem district, with bedding capacity of about 125. This impressive hospital still retains the foundations of its original structure, which date back to the early 20th century, when it was founded by a German doctor serving the local community.
Since then, the hospital has expanded to now cater to the 170,000 inhabitants in Beit Jala and surrounding villages, with others coming from the far reaches of the West Bank. Beit Jala Hospital caters to the needs of most illnesses, although as with most West Bank medical facilities, some cases are referred to Israel, or a third country, for specific treatments.
In 2001, United Nations Development Programme/Programme of Assistance to the Palestinian People with funding from the Italian Government, initiated a US$1.5 million project that established the National Palestinian Onco-hematology Center at Beit Jala Government Hospital. The project's aim was to assist the PNA in carrying out the National Health Plan through the establishment of the Center, aimed at improving the level of advanced medical services in West Bank and enhancing access to highly specialized services in the fields of oncology and hematology. The project was completed in 2003.
“Indeed, it's the only governmental hospital in the district and people from as far away as Jericho and Ramallah travel to the Onco-heamatology Center, for services from diagnosis to chemotherapy and patient care. “Focus-Volume 4-2005 Empowering Women”.
Beit Jala Hospital Onco-hematology Center has 25 beds; a 3-room day care unit with 6 beds and 11 armchairs for outpatients; and a specially constructed histopathology laboratory, in which tissue is studied for cancerous cells. The project also includes a training component, whereby personnel are trained in Italy, and in Beit Jala, by visiting Italian health professionals, including physicians and nurses. The final component included the provision of chemotherapy drugs for patients during the center's first year of operation, and the purchasing of specific equipment for procedures including colonoscopy and proctoscopy.
Women receive many services at Beit Jala oncology department, including breast examinations.
The Director of Beit Jala Hospital expressed concerns although for the high number of cancer cases among women. He cites limited early detection as one of the main reason for the high number of fatalities among cancer patients.
“Unfortunately most patients come to us with late stage cancer. Some women in particular are afraid to go to the doctor, as they do not want to face the prospect of being ill. So they delay it and thus early diagnosis and optimal treatment become impossible. There is a great need for more education and awareness-raising on the importance of early detection and regular screening,” explained The Director of Beit Jala Hospital.
DESCRIPTION OF THE STRUCTURAL PROBLEM
The main problem revolves around the lack of affordable palliative care services to Palestinian cancer patients, which directly affects their QOL because of deferring thinking about initiation of establishing a hospice center to serve patients by key word personnel that might be due to lack of awareness, concerning the crucial role of finding out such places besides the shortage of health care providers in cancer field either due to financial problems or absence of voluntarism.
Palestinian statistics showed a high mortality incidence rate among cancerous patients as most cases are discovered at a late stage. The government plays an important role in the delay process of not executing such project, as it is not involved in their priority ladder yet. The trend is still directed toward cure rather than palliative care in late stages of cancer. Dispensing morphine for patients is still in debate. Admitting patients in late stages to hospital wards is considered a burden; therefore, most patients are discharged despite their need to be treated. Some nongovernmental institutions take responsibility for spreading information as regards the early discovery of cancer besides affording mammogram as a screening test with little fees in return.
In addition, most health care providers in Palestine who work in cancer units need training and education concerning providing patients with palliative care as there is no curriculum present to address problems and the effective solutions suggested for them either in medical or nursing schools.
Most nurses get terrified when they are asked to work at cancer units or even handle the cytotoxic drugs. Governmental hospitals do not own vertical laminar flow devices besides personal protective equipment that is needed during cytotoxic drug preparation and administration.
Staff shortage in hospitals is also a serious problem.
The recommendations that we can conclude, depending on the needs assessment that we did, and according to the recommendations that come up through the workshop that was organized by Al-Sadeel Society and was attended by key personnel from the Palestinian MOH who summarized the conclusion, are as follows:
- Need for better quality care for the cancer patient.
- Need for training of health professionals in palliative care.
- Importance of networking and cooperation between the national non-governmental organization and the MOH.
- Need for public awareness regarding the early detection for cancer, especially breast cancer.
- Need for national policy and standards for palliative care and opioids legislations.
- Importance of base line data and research.
- Need for interdisciplinary teamwork in the issue of cancer.
- To involve palliative care education within the curriculum of schools of health professions.
Al-Sadeel Society team conducted a research to highlight the concept of QOL for Palestinian cancer patients through providing an understanding about influences of cancer and chemotherapy on QOL of cancer patient, this with comparison with international data about QOL.
We used the EORTC QLQ-C30 V. 3.0 to assess QOL of cancer patients, the sociodemographic and clinical variables, which affect the functional scales and global QOL (GQOL) scale of the QLQ-C30. Participants were patients who attended to oncology wards to receive chemotherapy in the 2 main oncology centers in Palestine.
The 70 patients were aged 18 to 70 years with a mean of 50.13 (SD=14.34), 48.6% were male and 51.4% were female, 62.8% were in stage III and IV of cancer. The score of GQOL was 48.4 and the 5 functional scales ranged 45.9 to 57.6, which indicate poor function and QOL. In addition, when used 33.3% cutoff point, those with problematic function and QOL ranged 27% to 57% of the sample. Relating the symptoms and items of EORTC QLQ-C30, most of them were intense in the sample (16.9 to 62.3). All these results were problematic when comparing with international data about QOL, this indicates poorer QOL in Palestinian cancer patients. Factors, which found to be associated with GQOL and QOL domains, were sex, income, ward, pain, fatigue, and cancer stage. Furthermore, the relationship was found to be negative between cancer and treatment-related scales with QOL scores, which indicates a negative impact of cancer and chemotherapy on QOL of Palestinian cancer patients.
The poor QOL that is investigated in this study can be made better by increasing the awareness toward cancer and improving palliative care in Palestine. In addition, Palestinian cancer patients should receive more psychological, spiritual, and social care.
The volunteers of Al-Sadeel Society did also conduct interviews with nurses working at Beit Jala hospital, to assess the challenges and obstacles that they face in pain management for cancer patient. Oncology nurses at the Palestinian Authority face many challenges and obstacles in their practicing of pain management for the cancer patient. These challenges are classified under 3 main categories: rules and regulations, nurse-related practices, and patient and family beliefs.
The current rules and regulations in the Palestinian authority regarding opioid use and consumption are complicated and consist of long routine process, special forms for prescribing opioids with duplication of forms and the need for many signatures and approvals from the doctor and the administration are in use. The amount of medication prescribed for patients are restricted and not to exceed 30 tablets of morphine chronic release and 5 ampoules of morphine. Morphine immediate release is not available, no national policy for palliative care and pain management available at present in the Palestinian Authority. Pain treatment and palliative care are not priorities for the government, complex procurement and prescription regulations and the threat of harsh punishment for mishandling morphine discourage pharmacies and hospitals from stocking and healthcare workers from prescribing it.
Nurses effect in the process of pain management in local oncology department in the governmental hospital is limited to administering the ordered medications for the patient, as well; the high work load, the limited time available for assessment of patient needs and pain, and the lack of training and education in pain management and palliative care are of the main obstacles. In addition, nurses' attitude toward patient's perception of pain and disbelieve of the patients' complaint of pain is another obstacle. Moreover, pain management is not in the priority of the nurse schedule of work and daily duties and is not taken as a fifth vital sign. Nurses' accessibility to controlled drugs is constricted and complicated. Myths and misbelieves of nurses regarding side effects of opioids are also major obstacles.
Public attitude and social and cultural issues toward pain perception and pain management is a considerable obstacle. The public tend to believe that bearing pain is part of the human well being, and consider morphine consumption as a social stigma. People also tend to fear addiction of opioids, and belief that they should not use analgesics for mild or moderate pain as they will get tolerated to them and they will not find anything for their pain if it gets worse. They combine the use of morphine with the end of life and death. Patients and families usually look forward to curative care rather than palliative care and pain management and believe that pain will go with the eradication of the disease itself. Moreover, patients have limited accessibility and affordability of pain medications, not enough services (palliative care services) that limit the availability of pain medications for the patients. Finally, mistrust between staff, patient and family, patient and family education (other caregivers) are an obstacle.
Misinformation about oral morphine remains extremely common among healthcare workers; knowledge about how to assess and treat pain is often absent or deeply inadequate. The combination of ignorance among healthcare workers with myths about opioids results in failure to treat patients, who are suffering from severe pain with opioid analgesics. (Human Rights Watch, March 2009).
Al-Sadeel Society in cooperation with the Middle East cancer consortium started educating health professionals in palliative care by sending a physician to San Diego hospital in the USA. We also have one physician training in Rambam hospital and anther one in Shaarei Zedek in Israel. We are preparing educational material for the staff, patients, and their families. This material will be in Arabic.
Special appreciation and thanks to Middle East Cancer Consortium and its Executive Director, Professor Michael Silbermann, for their continuous help and support.
Major Sources of Information
1. Palestinian Central Bureau of Statistics, 2008 (http://www.pcbs.gov.ps).
2. Eastern Mediterranean Health Journal, Vol. 14, Special Issue.
3. Source: Based on data from “2004 Report on the Global AIDS Epidemic” (UNAIDS 2004).
4. Ministry of Health report, heath status in Palestine 2004.
5. HRD 2006.
6. Palestinians cancer registry.
7. Beit Jala hospital pharmacist.
8. Medical union.
9. Human Rights Watch, March 2009.