The cost of a taboo
Imagine a country where the event of giving birth and the period that precedes it (pregnancy) is a taboo. An event that nobody wants to talk about, when it happens it happens, a matter “in God’s hands”. Women and families are not being told about pregnancy or labor nor do they prepare for it. No pain relief is available, no information, emotional support or choices are allowed and, as soon as the expectant mother begins to show discomfort or symptoms related to pregnancy, she is put in an intensive care room for months, alone, in pain, while her family is paying a fortune every single day from loans they don’t know how they’ll pay back or from a national budget that is being drained with each pregnancy. No research on the topic, no data to guide decision-makers, no national policies.
This is no fiction, in Egypt this triple burden of pain, financial hardship and emotional depletion is one individuals, families and the community at large suffer from every day. This is exactly what we face in Egypt when dealing with another natural, unavoidable yet taboo event that affects not only women, but a 100% of the population: The event of death.
We treat death as an event we would hope to avoid by simply not preparing for. Many people live by the myth that if death is not talked about; it will pass without the pain associated with the loss of a loved one. This only serves to prolong the grieving process. Many physicians prefer avoiding clear-cut messages to their patients when their health is deteriorating. Families, are often faced with unclear statements such as “the matter is in God’s hands, we are not to predict the fate of the patient”. These confusing statements more than often reflect the discomfort of healthcare providers rather than any uncertainty they have.
This avoidance of dealing with the end of life 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 is minute, and the number of cited Egyptian healthcare researchers on this topic does not exceed the dozen.
In a country with relatively evolved national end-of-life care policy like the US, it is estimated that, in 2009, $50 billion were spent by Medicare for hospital bills during the last two months of patient’s lives, 20 to 30% of which may have had no meaningful impact in extending or improving patient’s lives. This is more than the budgets of the department of Homeland Security or the Department of Education and accounts for 25% of U.S. healthcare spending on dying patients each year.
In Egypt, 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 puts them at high risk of abuse by healthcare professionals, who sell them futile treatments and introduce them to a strenuous process of unnecessary and expensive medical interventions. The deterioration of public health service providers made the private ones particularly appealing; with private, out-of-pocket healthcare expenditures reaching enormous sums. Catastrophic illnesses and the high out-of-pocket healthcare expenditures were reported to push more than one fifth of the population into financial catastrophe and four percent into extreme poverty, according to a study conducted in 2014 before the currency devaluation. It is worth noting that, despite the relative increase in household budgets spent on health, more and more families cannot afford paying for their healthcare needs.
In short, we are talking about a formidable financial and emotional burden we face on daily basis that is only succeeding at providing our loved ones with the most “unhealthy deaths” possible.
What constitutes a “healthy death”?
It is common when addressing any issue related to the health of human beings, to go for a quick reminder of the World Health Organization’s definition of Health, “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” You would notice this “state of well-being” does not have to expand over a specific number of years making the person’s lifespan. Health is, by definition, this state of “well-being” that starts with the event of birth, ends with the event of death and covers anything in between.
So, health is not necessarily about the number of years a person would live, but mostly the “well-being” of that person that expands through his or her lifespan.
As a phase in a person’s life, the end-of-life phase ought to be as “healthy as possible”. We can assume it is the goal of any healthcare professional, any healthcare system, any caring relative or friend.
For failure to find national evidence, there is a global consensus that a “healthy death” is pain-free, in comfort, preferably at home, where patients are able to engage with family and friends. That is presumably how all of us who do not suffer sudden death would presumably like to go, the form of dying and death we would wish for ourselves, our families and friends.
An “unhealthy death” however is mostly a long, drawn-out, painful, in an alienating institutional environment, plugged into machines, alone and scared.
How many of our loved have a say on where they die? How many of our loved ones receive the dignity, and the right to “healthy death” as part of their right to health? The problem is epitomized by our lack of answer to these questions. However, we are in the look-out for an Egyptian family who did not face a nightmarish, painful and resources depleting experience with the death of a close one, mostly unnecessarily.
In a 2014 study on public priorities and preferences for end-of-life care in Namibia, “being in pain” was reported as the most concerning of nine common end-of-life symptoms and problems, and the most important care-related aspect was having as much information as wanted. The majority (64%) would want their end-of-life care to focus on improving their quality of life rather than extending it, with 40% not wanting to know if they had limited time left to live.
These personal preferences reflect the individuality of people’s preferences and concerns regarding their end-of-life preferences. Before solutions are designed to address this gap between expectations and reality, we must state that a “one-size fits all” model will not work. We need a national policy that puts people’s choices and preferences at the center. Even when it comes to preferred place of death, in population-based study in Kenya, “home” was both the most (51.1%) and least (23.7%) preferred place of death in a sample of nearly 200 surveyed individuals. This reflects that people’s living conditions, socio-economic status and perceptions greatly affect these choices. Not all people would automatically prefer to spend their end of live phase at home: a person living detached from family in a country where access to pain medication may least prefer to die at home.
A dignified, healthy end-of-life is possible
We are in no need to reinvent the wheel, just to adapt it. Developed and developing nations have put in place national policies to attempt to these pitfalls. Countries from the UK to Rwanda, Kenya and Namibia have developed and implementation end-of-life care national policies that managed to significantly improving the well being of patients in their end of lives and reducing unnecessary costs that do not match patient’s preferences.
In Egypt, national NGOs and a limited number of palliative care centers have been operating with minimal resources, against resistance and government neglect for years, trying and succeeding to make a difference in the way people live their last days. Services provided through the palliative care unit in the Cairo University medical school are relieving around 600 patients every year from severe pain, significantly improving their quality of lives while they are undergoing curative treatment. It also made it possible for families to honor the wishes of 73% of patients with terminal illness to die comfortably at home. Local NGOs such as the Josaab foundation are providing home-based hospice services to hundreds of terminally ill patients across Egypt.
Yet, this is hardly sufficient to address the large defect in services we are suffering from. The UK with 65 million inhabitants has had nearly 3200 hospice and palliative care beds in 2009, in all accounts, Egypt does not have a hundred of those. (The Cairo university medical school has only 8 hospital-based inpatient palliative care beds, the rest is mostly provided by NGOs).
We can’t improve what we don’t measure
We need to examine, study and change the way we approach the end of life. We need to shift from an “every party loses” situation where patients suffer in pain and discomfort, families go into poverty and state resources are depleted, all unnecessarily, to a situation where the right to a healthy death becomes part of the right to health. Where healthcare providers understand their mandate of not only prolonging lives but also improving the quality of life, specially when death is inevitable. Where effective, evidence-based national policies are put in place to ensure patients have access to accurate information about the progress of their health status, given choices regarding their end-of-life preferences, enabled palliative treatment that improves their quality of lives, reduces their pain and where health and socio-economic implications are carefully accounted for when dealing with this unavoidable phase in every person’s lives.
In the wake of a new social health insurance system, rising costs of healthcare services and increased economic difficulties on individuals and families, we are in deep need to give this issue the priority it deserves, to deal with death without the taboo and solemn connotation it evokes. To give ourselves and our loved ones the tools and the space to think and prepare for our end-of-live in the same way we think of any other life event like adolescence or pregnancy. An event that is likely costing us the biggest chunk of our resources as families and as nations, the biggest source of pain in our every days lives, simply because are afraid to talk about it.
Download our “End of Life Care – In brief” document for more details.
- Extending the Right to Health to the Moment of Death: End of Life Care and the Right to Palliation in Rwanda, Agnes Binagwaho et al. Health and Human Rights Journal, 2015, https://www.hhrjournal.org/2015/12/extending-the-right-to-health-to-the-moment-of-death-end-of-life-care-and-the-right-to-palliation-in-rwanda/
- The 2015 Quality of Death Index Ranking palliative care across the world, The Economist Intelligence Unit, 2015 https://www.eiuperspectives.economist.com/sites/default/files/2015%20EIU%20Quality%20of%20Death%20Index%20Oct%2029%20FINAL.pdf
- Oxenham D, Finucane A, Arnold E, et al Delivering preference for place of death in a specialist palliative care setting BMJ Open Quality http://bmjopenquality.bmj.com/content/2/1/u201375.w897
- Elshamy K (2015) Current Status of Palliative Care Nursing in Egypt: Clinical Implementation, Education and Research. J Palliat Care Med S5:005. https://www.omicsonline.org/open-access/current-status-of-palliative-care-nursing-in-egypt-clinical-implementation-education-and-research-2165-7386-1000S5005.php?aid=65135
- To die a healthy death is not an oxymoron, Trevor Hancock:, 2015 http://www.timescolonist.com/opinion/columnists/trevor-hancock-to-die-a-healthy-death-is-not-an-oxymoron-1.1758728
- The Josaab Foundation Website: http://www.josaab.org/
- The Value of ICU Care at the End of Life, Thomas W. Feeley, NEJM Catalyst, 2016, https://catalyst.nejm.org/value-icu-care-end-of-life/
- Where Do Egyptian Palliative Care Patients With Cancer Die? Samy A. Alsirafy, Sage journals, 2010, http://journals.sagepub.com/doi/abs/10.1177/1049909109357613
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- Opioid Needs of Patients with Advanced Cancer and the Morphine Dose-Limiting Law in Egypt, Samy A. Alsirafy et al, Journal of Palliative Medicine, Vol. 14, No.1, 2011, https://www.liebertpub.com/doi/abs/10.1089/jpm.2010.0220
- Elshamy K. Cultural and ethical challenges in providing palliative care for cancer patients at the end-of-life. Palliat Med Hosp Care Open J. 2017, https://openventio.org/Special-Edition-1/Cultural-and-Ethical-Challenges-in-Providing-Palliative-Care-for-Cancer-Patients-at-the-End-of-Life-PMHCOJ-SE-1-116.pdf