The triple burden of pain, financial hardship, and emotional depletion associated with death is one suffered by many individuals and families in Egypt. Many people live by the myth that if death is not spoken about, it shall pass without the pain associated with the loss of a loved one. However, this misbelief only prolongs the grieving process on the deceased&rsquo;s family and loved ones (Prater). The taboo we have created around death makes the <a href="https://www.nia.nih.gov/health/what-end-life-care">end-of-life</a> phase the most emotionally and financially draining period in a person&rsquo;s life; meanwhile, families and national budgets get consumed in healthcare services that often fail at providing real value to patients.&nbsp;Hence, this avoidance of dealing with the end-of-life phase and its inevitability transcends beyond popular behaviors. It creeps out to our research output, national policies and government priorities. National evidence regarding the end-of-life period is minute, and the number of cited Egyptian healthcare researchers on this topic does not exceed the dozen. For this reason, this article provides an overview of the socio-economic and health implications resulting from the lack of preparedness for this inevitable phase in every person&rsquo;s life. It emphasizes the need for tools, measures and evidence-based national policies that give this critical phase the importance it deserves.
<h3 style="text-align: justify;">The need for palliative care</h3>
The absence of a discussion on medical futility and concealment of accurate diagnosis results in patients with life-limiting diseases often being administered expensive, irrelevant and invasive treatments; consequently, exposing them to excessive pain and suffering until their death. One example that underlines the need for palliative and end-of-life care development in Egypt is that national resources for cancer control are almost exclusively directed to treatment, whereas most cancer cases are diagnosed at advanced stages (stages III and IV); hence, they are unlikely to respond to curative treatment (Elshamy, 2015). Another example is the common misconception of the Intensive Care Unit (ICU) being a place for the terminally-ill instead of the critically-ill, which leads to excessive unnecessary admissions (Mokhtar,&nbsp;2015). Palliative and end-of-life care are increasingly recognized as indispensable components of comprehensive care worldwide. In Egypt, however, they are largely absent with no government-led strategy for their development in the foreseeable future.
Moreover, Egyptians with chronic and life limiting conditions such as cancer, heart and respiratory disease are often diagnosed late. These diseases account for an estimated 82% of all deaths and 67% of premature deaths in Egypt (WHO EMRO, 2018). Patient referrals to medical specialists are often delayed, which means that their diseases are not amenable to curative treatments. Attempts to cure disease are frequently coupled with aggressive medical interventions that are costly and often associated with poor quality of life, psychosocial distress and suffering of patients and their families. It is estimated that 70-90% of patients with cancer pain will require moderate to severe pain relief during the course of their illness. However, it is common for Egyptian patients, who do not respond to medications or lack the strength to undergo further treatment, to be neglected by their doctors; consequently, they are left to suffer alone without guidance or support. On the contrary, approximately half of the cancer patients in the eastern Mediterranean Region only visit a physician when their cancer has progressed to an advanced and often incurable stage (Silbermann et al., 2015). For them, the main focus of care should be placed on improving the quality of life. Therefore, their only realistic treatment option is palliative and end-of-life care.
Similarly, terminally-ill patients and their families are particularly vulnerable and cling on to any false hope that may be intentionally or unintentionally communicated to them. Their vulnerability places them at high risk of abuse by a fragmented healthcare system. The deterioration of public health services in Egypt led private clinics and health service providers to become particularly appealing. Consequently, this resulted in the increase of private, out-of-pocket healthcare expenditures by enormous sums, reaching 62% of the total health expenditures according to the WHO&rsquo;s latest available figures (WHO Global Health Expenditure Database). A study conducted in 2014 (before the currency devaluation) also showed that catastrophic illnesses and high out-of-pocket healthcare expenditures push more than one-fifth of the population into financial catastrophe and four percent into extreme poverty (Rashad, 2014). It is worth noting that, despite the relative increase in household budgets spent on health, an increasing percentage of low-income families cannot afford paying for their healthcare needs (Christopher, 2011). As a result, periodic check-ups and adequate curative care have become unaffordable, thereby accelerating the probability of disease progression to terminal stages. Due to a widespread presence of incurable illnesses among patients from high- or low-income households, a dire need for palliative and end-of-life care has emerged.
Palliative care encompasses end-of-life care but is also administered to patients suffering from serious and incurable illnesses. It is concerned with ensuring an optimal quality of life to patients and their caretakers. This is performed in-part through pain and symptom management, addressing social, spiritual and psychosocial needs, and extends over the continuum of a patient&rsquo;s illness. Access to palliative care is increasingly recognized as a human right, based on Article 12.1 under the International Human Right to Health section within the International Covenant on Economic, Social, and Cultural Rights (ICESCR) (1996). Despite its importance, Egypt was ranked 79 out of 80 countries with regard to the quality of palliative and healthcare environment and the existence of a well-articulated, effective, and widely implemented government strategy. The ranking, performed by the Economist Intelligence Unit in 2015, was performed using a set of measurable indicators that include the presence, relevance and feasibility of government policies to deliver palliative care services. Many consider that end-of-life care only focuses on patients nearing the end of their life, usually during their last 6-12 months. The primary goal of end-of-life care, however, is to maintain quality of life and enable patients to attain a &lsquo;healthy death&rsquo;.
<h3 style="text-align: left;">What constitutes a &ldquo;healthy death&rdquo;?</h3>
The concept of a &ldquo;healthy death&rdquo; and its role in preserving the dignity and individuality of the passing is predominantly unfamiliar in Egypt. The World Health Organization (WHO) defines health as &ldquo;a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.&rdquo; Accordingly, the goal of any healthcare system is to ensure that the end-of-life phase is as healthy as possible. Moreover, there is a global consensus that a healthy death is pain-free, in comfort, and preferably at home, where patients are able to engage with family and friends. &nbsp;An &ldquo;unhealthy death,&rdquo; however, is mostly a long, drawn-out, and painful process, taking place in an alienating institutional environment, while the patient is alone, scared, and plugged onto machines (Hancock, 2015). Not all people would automatically prefer to spend their end-of-life phase at home. Hence, this reflects that people&rsquo;s living conditions, socio-economic status, and perceptions greatly affect their choices.
<h3 style="text-align: left;">A dignified, healthy end-of-life is possible</h3>
There are several examples from both developed and developing nations that have introduced national policies to remedy defects in palliative care and healthcare services for severely-ill patients. Countries from the UK to Rwanda, Kenya and Namibia have developed and implemented end-of-life care national policies that managed to significantly improve the well-being of patients. It also reduced unnecessary costs that do not match patients&rsquo; preferencies.
In Egypt, national NGOs and a limited number of palliative care centers have been operating with minimal resources against resistance and the neglect of government officials for years. Against all odds, they managed to make a difference in the way people live their last days. For example, services provided through the palliative care unit in the school of medicine at Cairo University are relieving around 600 patients every year from severe pain; hence, they are successfully and significantly improving patients&rsquo; quality of life while they undergo curative treatment. These efforts also made it possible for families to honor the wish to die comfortably at home of 73% of patients with terminal illnesses (Alsirafy, 2010). &nbsp;Local NGOs such as the Josaab foundation are providing home-based hospice services to hundreds of terminally-ill patients across Egypt.
Nonetheless, these initiatives are hardly sufficient to address the large defect in the end-of-life health services currently present in Egypt. With 65 million inhabitants, the UK has had nearly 3200 hospice and palliative care beds in 2009. In sum, Egypt does not have a hundred of those. (The Cairo university medical school has only 8 hospital-based inpatient palliative care beds, while the rest is mostly provided by NGOs) (Alsirafy, 2010).
<h3 style="text-align: justify;">Conclusion &nbsp;</h3>
The absence of the issue in public debates and Egyptians&rsquo; lack of awareness about it means that numerous patients will continuously die while suffering from excruciating pain, irrespective of their socioeconomic status. Focusing on palliative and end-of-life care could accelerate progress towards reducing avoidable suffering. For that reason, the way the end-of-life phase is approached in Egypt must be thoroughly examined and studied in order to instill real change.
Understanding that the mandate of healthcare providers is not only to prolong lives, but to also improve the quality of life (especially when death is inevitable) is crucial. Accordingly, effective, evidence-based national policies should be enforced to ensure that patients: 1) have access to accurate information about the progress of their health, 2) are given choices regarding their end-of-life preferences, and 3) granted palliative treatment that improves the quality of their life and reduces their pain. Under such a system, health and socio-economic implications would be carefully accounted for and minimized.&nbsp;
<hr>
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