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SHORT REVIEW ARTICLE
Year : 2014  |  Volume : 2  |  Issue : 2  |  Page : 54-58

Exploring the perspectives of nurses, physicians, and healthcare administrators in Saudi Arabian hospitals on palliative care and palliative care nursing


Elizabeth Gaskell Campus, Faculty of Health, Psychology and Social Care, Manchester Metropolitan University, Manchester, United Kingdom

Date of Web Publication30-Apr-2014

Correspondence Address:
Fhaied Khalaf Almobarak
25 NV Buildings, 96 The Quyas, Salford, Lancashire, M50 3BB, Manchester
United Kingdom
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DOI: 10.4103/1658-600X.131747

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  Abstract 

Palliative care is an area in healthcare that is focused on alleviating and/or preventing the suffering experienced by patients across various conditions. In recent years, palliative care has grown tremendously as an integral part of healthcare institutions worldwide. However, not all countries have well-established palliative care services, or recognise the importance of palliative care. It is important for healthcare professionals to recognise the value of palliative care, and those who work in order to be able to provide such care to patients. However, there may be professional and cultural barriers that prevent practitioners in specific contexts to be able to do so. Specifically, this paper considered the context of the Kingdom of Saudi Arabia (KSA), which is known to be culturally different from the west where the concept of palliative care originated and where the recent progress in palliative care is most evident. In this paper, reviewing of articles regarding cancer care in Saudi Arabia, cancer pain in Saudi Arabia, overview of palliative care in Saudi Arabia and issues with palliative care in Saudi Arabia are analysed and discussed to proceed with the intended research study to solve the research questions.

Keywords: Cancer care, hospice care, palliative care perception in Saudi Arabia, pain care


How to cite this article:
Almobarak FK. Exploring the perspectives of nurses, physicians, and healthcare administrators in Saudi Arabian hospitals on palliative care and palliative care nursing. J Health Spec 2014;2:54-8

How to cite this URL:
Almobarak FK. Exploring the perspectives of nurses, physicians, and healthcare administrators in Saudi Arabian hospitals on palliative care and palliative care nursing. J Health Spec [serial online] 2014 [cited 2020 Aug 6];2:54-8. Available from: http://www.thejhs.org/text.asp?2014/2/2/54/131747


  Cancer Care in Saudi Arabia Top


According to Al-Shahri, Saudi Arabia experiences about 8,000 reported cancer cases annually, providing an incidence rate of 37.8 for every 100,000 and an age-standardised rate of 60.9 for every 100,000. [1] Among these cases, the most common for men are colorectal cancer, non-Hodgkin lymphoma, liver cancer, leukaemia and prostate cancer in that order, while the most common for women are breast cancer, thyroid cancer, colorectal cancer, leukaemia and non-Hodgkin lymphoma in that order. Compared to other countries, this rate is considerably low. [2] The reliability of this report is reasonably high, as it involved the official health agencies of different countries. The data that were collected in this study was not the direct work of the researchers, but were conducted by much larger government institutions with greater capacity to conduct a valid census of their respective populations.

Statistics provided by each country were scrutinised by the independent research body in order to make sure that the statistics can be compared. While Saudi Arabia was found to have comparatively low cancer rates, these rates were found to be similar to those of other Middle-Eastern countries, indicating that phenomenon of low cancer incidence rates may be region-wide instead of just being limited to Saudi Arabia. One limitation of the report by Jemal et al., is that it did not attempt to find reasons behind the distribution of cancer incidence rates across different countries. [2] Given that the results of this global survey were only released in 2011, no studies have yet been published that sought to provide possible explanations for the incidence rate distributions. One potential consequence of the low incidence rates in Saudi Arabia is that it may mean that the conditions are not as grave a social concern in the Saudi population as it is in other populations. However, this was clearly not the case in an early survey reviewed by Gray et al., where it was found that cancer was one of the grave health concerns of healthy Saudis. [3] The problem with this was pointed out by Ibrahim et al., which also found that the incidence rate of cancer in the country is lower than other countries. [4] According to Ibrahim et al., one problem that can arise is that public and private institutions within the country may choose not to focus on developing stronger cancer treatment and research programmes on the assumption that rates will continue to be low in succeeding years. [4] According to regression forecasting analysis conducted by Ibrahim et al., this may not be the case, at least for Saudi Arabia, where there is predicted to be a 5 to 10-fold rise in overall cancer incidence rates by the year 2030, with the age group foreseen to be suffering most from cancer being middle-aged and elderly Saudis. [4] Ibrahim et al., used data for the past 20 years in order to come up with a regression formula that modelled cancer incidence based on previous incidence rates. [4] One problem with this type of regression analysis is that the outcomes are typically only useful for short-term prediction. That is, for predicting incidences in the next few years following the study. However, Ibrahim et al., used the data to make forecasts several decades in the future from the available data, which definitely exposes such estimates to significant error. [4] Nonetheless, even in the study's immediate predictions, it is clear that there is an upward trend in the incidence of cancer in the country, which implies that there is a need for greater palliative care in Saudi Arabia in the future.


  Cancer Pain in Saudi Arabia Top


Most likely as a consequence of its low incidence rate, limited information about cancer pain in Saudi Arabia is available. However, there may be other factors that can also affect the limitation of information about cancer pain in Saudi Arabia. For example, information about cancer pain may be limited by the ability of healthcare institutions in the country to provide such information to the general public. As explained by Abu Zeinah et al., one problem with regard to cancer care in Saudi Arabia is that institutions that are equipped to deal with such conditions are located far apart from one another. [5] In a desert setting such as Saudi Arabia, where local travel is challenging, there may be limited motivation in such institutions to conduct information dissemination projects to reach remotely located areas in the country.

Al-Shahri posited that since most patients who are diagnosed with cancer in the country are diagnosed at late stages, it can be assumed that pain from cancer is a significant issue in the country. [1] This does not contradict the idea that there is limited information about cancer pain in Saudi Arabia, nor that there are low incidence rates of cancer in the country. Rather, it shows that when cancer is typically diagnosed in the country, it is at the stage where the patient is already suffering from considerable pain, and is therefore, in need of quality palliative care. This makes the problem of having an underdeveloped palliative care system even more critical, as it shows that when cancer patients in the country are identified, they may already be suffering from considerable levels of pain.

However, this position is contrasted by inputs from Al-Shahri which reported that only 9% of patients in pain clinics were found to suffer from cancer-related pain. [1] On the other hand, one study reviewed by Gray et al., found that 92% of cancer patients surveyed had suffered pain, either from the disease itself or from the treatment regimen that they were given. [3] However, none of those interviewed claimed to have received professional assistance with respect to their pain. In addition to this, another survey that was included in the review of Gray et al., found that most Saudis, while being concerned about cancer, had limited knowledge about it and had many misconceptions. [3] These contrasting inputs show that many aspects of cancer-related pain in Saudi Arabia are still unclear, which gives greater impetus for this study to examine at least one of those aspects, the perspectives of physicians and nurses about palliative care in the country, in greater detail.


  Overview of Palliative Care in Saudi Arabia Top


While Saudi Arabia has had a palliative care programme at King Faisal Specialist Hospital and Research Center (KFSHRC) since 1991, slow progress has been made in the field of palliative care. [1] KFSHRC offered the first fellowship programme for palliative care in the country in 2000, a full decade after its palliative care service was established. [1] Nonetheless, Al-Shahri claimed that palliative care graduate fellows from KFSHRC have since established palliative care programmes in other major cities in the country as well as in other countries in the Middle East. [1] However, no definite statistics were presented to support this.

There had been a proposal to create a nationwide programme but it has yet to be approved. [1] Abu Zeinah et al., found that palliative care also began to be offered in Jeddah in 1998, specifically for patients suffering from cancer. [5] It is notable that as pointed out by Abu Zeinah et al., the initiative at Jeddah is only the second since the one at KFSHRC, which means that it took over 7 years for palliative care to become a formal concern in another institution in Saudi Arabia. [5] By 2010, which was the most current data collected by Abu Zeinah et al., there were already over 15 cancer centres in the country, each with its own palliative care system. [5] However, Abu Zeinah et al., admitted that this progress was insufficient, as the need for palliative care was found to grow with the number of institutions that began offering it. [5]

It was as if people in the country did not realise that they did not need to suffer from cancer and cancer treatments as much as they did. The development of palliative care in the country showed Saudis that the pain that came with the disease can be eased with proper medicine and management.


  Issues with Palliative Care in Saudi Arabia Top


Alsirafy et al., presented various statistics on palliative care in Saudi Arabia. [6] From a review of 629 medical records at KFSHRC, it was found that 86% of patients admitted to the palliative care unit (PCU) died in the hospital. This was high compared to PCUs in other countries. The reason behind this higher rate of mortality was considered to be the greater use of home care in Saudi Arabia, which leads to patients being brought to the PCU when their conditions were already at a critical stage. In addition to this, another factor that contributed to the mortality rate was that many patients, after being admitted to the hospital, are no longer able to be discharged even when they have stabilised and can be transferred back to home or hospice care. This was because most of the other cities in the country still had inadequate palliative care capabilities, and people travel great distances across Saudi Arabia in order to reach KFSHRC in Riyadh.

As such, there is usually no suitable facility in which to discharge patients, and the risks associated with travel are often too great to make the patients go back after they have received treatment. The study concluded that the present palliative care model in KFSHRC is inadequate in addressing all the unique needs of cancer patients in Saudi Arabia. This inadequacy leads terminally ill patients suffering considerably as inpatients in a stressful setting and contributes to the high death rate experienced by the hospital. [6] Alsirafy et al., emphasised the need to examine the present model and make changes to it in accordance with the demands of the Saudi setting. [6] However, specific recommendations of what those changes ought to be were not provided by Alsirafy et al.[6] The study only pointed out that settings used in other countries, as revealed from literature, were found to be considerably better than those experienced at KFSHRC.

Gray et al., from a systematic review of literature, identified various issues in the development of palliative care in the country. [5] First, there was the issue of ineffective communication, where it was shown from an internal report at KFSHRC that referring doctors sent patients with advanced cancer over long distances to KFSHRC only for them to be sent back home since their facilities there already had the means to take care of them. These patients were found to have been conditioned by their referring doctors to think that institutions such as KFSHRC were the only places where they can be provided with the pain management care that they needed, and that the pain that they were suffering from progressive stages of cancer can somehow all be removed once they were at KFSHRC.

According to Gray et al., the reason behind this behaviour of local practitioners may be their lack of confidence, knowledge or skills in handling the palliative care needs of their patients. [3] As a result, patients are left unaware about their palliative care options, and end up suffering considerably during the end stage of their diseases. Another problem related to this issue is that most doctors in local communities still tend to focus solely on curative treatment plans for cancer patients, even when palliative care should already be considered as the best option. [3] There is still insufficient communication to local practitioners on the benefits of locally administered palliative care in improving the quality-of-life of their patients. The second issue identified by Gray et al., pertains to problems with the sufficiency of inpatient units. [3] While Saudi Arabian culture has strong family ties which translate into a good support system at home, some cancer patients have "overwhelming symptoms" which the family are not prepared to handle. However, many local hospitals were found to be underequipped to handle the palliative care of such patients, or may not have a palliative care inpatient unit at all. [3] Another issue is the lack of coordination between different professionals in hospitals where palliative care is concerned. Gray et al., considered the need to have a consultative team that can coordinate with doctors and nurses on matters regarding a patient's palliative care. [3] However, one problem with the study of Gray et al., is that it is considerably dated, having been based on studies that are at least 15-years old. [3] While there is no certainty that the same conditions exist and the situation has not improved, inputs from Al-Shahri [1] about the slow progress of palliative care in the country and from Alsirafy et al.,[6] on current statistics in relation to palliative care support the position that the situation has indeed not improved significantly, and lend credence to the arguments for development of palliative care that were brought forward by Gray et al.[3]

Another issue in pain management in Saudi Arabia is the country's highly restrictive policies on pain medication. As found by Al-Shahri, the per capita consumption of morphine in the country is less than 0.35 mg, which when compared to the worldwide consumption of 5.6 mg shows that people in Saudi Arabia are provided with much lower doses of pain medication than people in other countries. [1] This work is very reliable, as it directly gathered data from the Ministry of Health in Saudi Arabia and compared with earlier statistics gathered by the World Health Organization from other countries. Based on the statistics gathered by Al-Shahri, it is clear that Saudi Arabian citizens have very limited access to pain medication, which has critical implications to the quality of palliative care in the country. [1]

While palliative care is certainly not just about pain management and pain management in turn is not just about administering pain medication to patients, pain medication is nonetheless a critical component of palliative care. Much of the pain suffered by patients are physiologically induced by their afflictions. This is very true in the case of cancer, where pain is directly proportional to the severity of the condition. As such, pain medication serves the role of directly alleviating physiologically caused pain, so that other palliative care strategies can be used to treat emotional and psychological pain that are felt by the patient. Pain medication, therefore, serves as the first line of defense of palliative care professionals. When there is insufficient pain medication available, it can be expected that the initial needs of palliative care patients could not be met, which would make it more difficult for practitioners to address the other pain that are being felt by their patients. This places palliative care practitioners at a significant disadvantage in attempting to help patients deal with the pain that they are suffering.

This has been a consistent problem, as it was also mentioned in the work of Gray et al., more than a decade prior. [3] According to Gray et al., the reluctance of doctors to administer morphine may be due to culture-affected misinformation, where doctors may look at the substance as a tool for euthanasia, an act that is perceived as immoral in Saudi. [3] Doctors may feel that by allowing patients to have greater access to morphine, they are encouraging them to use the substance more often and in doing so, are contributing to the possibility that they would die sooner than they would have without such open access to pain medication. According to their culture, this would place them in the position of being responsible for the untimely death of their patients. Similarly, doctors may also feel that giving patients greater access to morphine can increase the chance of such patients becoming addicted to pain medication, which is another cultural taboo in Saudi Arabia. These examples show that culture may be a very relevant factor in considering why palliative care in the country has not developed as well as it has in other countries over the last decade. It may be that there are aspects of palliative care, such as providing greater access to pain medication, that run in contrary to cultural values that are held by medical practitioners in Saudi Arabia.

On the other hand, Al-Shahri disregarded culture as the cause for this suboptimal use of pain medication, since the Ministry of Health allowed the use of opioids and Islamic doctrine has little to say against the medical use of such substances. [1] Instead, Al-Shahri argued that the problem may lie in practitioners' knowledge and competence in their role as pain managers. [1] However, no empirical evidence was provided to support the arguments made by Al-Shahri or Gray et al.[1],[3] Another concern that was raised in Saudi Arabia with regards to the use of pain medication for palliative care is the risk of patients becoming addicted to pain medication. [5] Of course, properly administered pain medication has negligible risk of making a patient addicted. As explained by Abu Zeinah et al., [5] and consistent with Al-Shahri, [1] the reluctance of practitioners to provide ample pain medication can be one of the misconceptions that doctors in Saudi Arabia are prone to having which prevent them from being able to deliver quality palliative care.

Aside from cultural and professional peculiarities in the Saudi Arabian palliative care setting, legal characteristics have also been explored. Specifically, Babgi compared and contrasted legal issues in palliative medicine in Saudi Arabia and the U.S. [7] The study examined laws and compared cases between the two countries, and found that there existed both important convergences and divergences that have implications to the end-of-life palliative care offered in Saudi Arabia. While Arabic law is based on Islamic tenets and U.S. law is based on an entirely secular system, both uphold the importance of life and the need to preserve it. [7] However, at the same time, laws in the U.S. put as much importance on individual rights and the need for people to be as comfortable as possible during the last of their days. As such, healthcare facilities in the U.S. are more likely to consider patients' wishes and to monitor how a patient is feeling more closely, whereas facilities in Saudi Arabia tend to see these responsibilities as falling more upon the family members of the patient than the practitioners in the facility itself. [7]

The emphasis of end-of-life care in Saudi Arabia is on preparing the patient to rest and go back to Allah, whereas facilities in the U.S. have been mandated to have considerable responsibility in making sure that a patient does not suffer needlessly under their care. [7] As such, the study was able to show that legal directives on palliative care are present in the U.S. that are not yet present in the context of Saudi Arabia. Part of the reason behind this, as inferred upon by Babgi, is the difference between how the two cultures perceived ownership of life. [7] Whereas the U.S. places this ownership upon the individual, Saudi Arabian culture perceives ownership of life as Allah's alone. As such, whereas the healthcare system in the U.S. can be seen as directly serving the interests of the patient, that in Saudi Arabia can be seen as serving the interests of Allah as expressed in Islamic laws, which means that protocols cannot be changed simply because of individual patients' preferences. An obvious consequence of this where palliative care is concerned is that saving and prolonging life is of higher priority in Saudi Arabian hospitals than making the patient comfortable and following the patient's wishes where their need for comfort is concerned, such as in the case of euthanasia or withdrawal of life support. [7] In such cases, the protocol of protecting the value and sanctity of life would take precedence over the needs and preferences of the patient.

While doctors are supposed to care for their patients above all else, this directive is overridden by the need for all people in the country to protect the cultural norms that define their society. As such, doctors will not provide patients with the means through which they can end their lives even if such patients already desire to die. In the context of this study, protocols in palliative care typically entail providing the patient with pain-killing medication. The issues arise when such medication may affect the remaining lifespan of the patient. In such situations, doctors would have to make the choice between allowing the patient to use pain medication at risk of reducing their lifespan, or withholding such medications from them with the purpose of enabling them to live longer although in great discomfort. These studies indicate that challenges to palliative care in Saudi Arabia exist on various levels. They exist at the professional level, where practitioners may neither be sufficiently equipped nor sufficiently oriented to deal with palliative care concerns. Saudi practitioners may have misconceptions that lead them to recommend or carry out activities that may actually be detrimental to the palliative care of their patient. Issues also exist at institutional levels, where palliative care systems that are in place in Saudi hospitals are insufficient for addressing the needs of its patients. There are also issues found at the cultural and legal levels, where pain and individual choice are not considered as an important enough concern in Islamic law especially when weighed against matters about prolonging and preserving life, and preparing the individual for the afterlife. As such, even if there were competent practitioners of palliative care in Saudi Arabian healthcare institutions, their hands are tied from doing or prescribing what should be the best course of action for a patient's comfort, dignity and well-being by the cultural-based wishes of the patients' family to keep the patient on life support even against that patient's will or to keep the patient from becoming addicted to pain medication.

 
  References Top

1.Al-Shahri MZ. Cancer pain: Progress and ongoing issues in Saudi Arabia. Pain Res Manag 2009;14:359-60.  Back to cited text no. 1
    
2.Jemal A, Bray F, Center MM, Ferlay J, Ward E, Forman D. Global cancer statistics. CA Cancer J Clin 2011;61:69-90.  Back to cited text no. 2
    
3.Gray AJ, Ezzat A, Volker S. Developing palliative care services for terminally ill patients in Saudi Arabia. Ann Saudi Med 1995;15:370-7.  Back to cited text no. 3
    
4.Ibrahim E, Bin SB, Banjar L, Awadalla S, Abomelha MS. Current and future cancer burden in Saudi Arabia: Meeting the challenge. Hematol Oncol Stem Cell Ther 2008;1:210-5.  Back to cited text no. 4
    
5.Zeinah GF, Al-Kindi SS, Hassan AA. Middle East experience in palliative care. Am J Hosp Palliat Med 2013;30:94-9.  Back to cited text no. 5
    
6.Alsirafy SA, Hassan AA, Al-Shahri MZ. Hospitalization pattern in a hospital-based palliative care program: An example from Saudi Arabia. Am J Hosp Palliat Med 2009;26:52-6.  Back to cited text no. 6
    
7.Babgi A. Legal issues in end-of-life care: Perspectives from Saudi Arabia and United States. Am J Hosp Palliat Med 2009;26:119-27.  Back to cited text no. 7
    



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