My ame jun was born in 1931 in Shahre Rey, Tehran. Per tradition, she married young and shortly after had her only child. It wasn't long before her life took a turn and her husband passed away after their first year of marriage.
As a teenage widow, she moved back to my grandfather’s house next to Haram Shaah Abdol Azeem. From that point on she dedicated her life to her son and became further spiritually and religiously devoted. She raised her siblings along with my grandmother, and was referred to as “maman” by all of them. After the upheavals of 1979 her only son moved to the United States and she became the sole entity at my paternal home. Throughout the years, I remember making the long trip from our apartment in Gheytarieh to the narrow, historic and conservative alleys of ‘Shaabdol azim’. Once there, we could be free, wild kids, in her large garden with its turquoise hoz at the center.
She filled up her loneliness reading religious texts and teaching at nehzat savad amoozi. Any extra money she had would go towards traveling to a religious pilgrimage site. Every trip was accompanied with souvenirs for us kids. Many summers my mom would ship me out to her house so I wouldn’t disturb my sister studying for her final exams. I recall one childhood summer when my cousin ‘Hooman’ and I decided to turn her hoz into a swimming pool. We took out all the goldfish with a basket and changed the water. We proceeded to wear our bikini and swimsuit and lounged around the “pool” while the religious neighbors observed this scandalous act and said ‘astaghforelah’ under their breaths. Through all of our antics she never reprimanded us or enforced piety upon us.
Since we left Iran, the years took their toll on her health and she gradually declined. Fortunately, with the help of home nurses and my other sacrificing aunt she was able to stay in her childhood home throughout all these years and lived with dignity.
This past month while being on two blood thinners she suffered a hemorrhagic stroke on both sides of her brain and went into a coma. Despite her poor prognosis and concomitant morbidities, the surgeons decided to operate on her to ‘save her life’.
Her life was “saved” but after the operation she was admitted to the ICU and her condition never improved beyond demonstrating primitive reflexes. Her breathing was controlled by a ventilation machine. Her body started to retain water due to renal failure and her frail body became unrecognizable given the severe swelling. Two large tubes were cut through her chest to drain the fluid. Since she couldn’t breathe on her own, her neck was cut for direct breathing into her lungs.
As a practicing surgeon myself in the United States and having been involved in numerous similar scenarios, I was enraged at the level of futile treatments provided. I do believe in events that sometimes defy our medical expectations, but I am realistic enough to realize that those “miracles” are usually in the case of younger, resilient patients without many pre-existing health issues.
Per my discussion with her surgeon, he was in agreement that these treatments were mere temporizing measures and nothing would improve her overall condition or improve the outcome. However, he was obliged by the hospital legislations and religious laws to do everything to “save a patient’s life”, even if that meant the patient remained in a vegetative state indefinitely.
During this process I realized the majority of individuals residing in Iran and abroad, were unaware of how such end of life situations are handled in Iran. To my surprise, many physicians in Iran practicing in the non-critical care, and ambulatory setting were unaware of these specific legal and medical parameters.
It is important to note that such ethical matters are not straightforward decisions in the U.S healthcare system either. The main difference in the United States is the incorporation of the patient’s wishes and the family’s decision along with the physician’s objective recommendations in structuring end of life care decisions as opposed to religious mandates.
One key element present in the US healthcare system is the concept of palliative and hospice care. The goal of palliative care is to provide relief from the symptoms and stress of a serious illness by assisting the patient and family with the emotional, social, practical, and spiritual problems that debilitating illnesses can bring up. The focus is to improve quality of life for both the patient and the family. Palliative care may be initiated from the time the illness is diagnosed all the way to the end of life.
In comparison, hospice care begins after the active treatment of the disease is halted and it is clear that the person is not going to survive the course of the illness. In the United States hospice and palliative medicine is a formal subspecialty of medicine, but such a field is not established in Iran. The lack of palliative care specialists relinquishes the management of end of life decisions to the treating medical team, which potentially creates a conflict of interest.
Another concept which may be poorly understood is euthanasia vs. withdrawal and withholding of life sustaining treatments. Euthanasia is the practice of intentionally ending a life in order to relieve pain and suffering. Withholding and withdrawal of life sustaining treatments refers to not using medical equipment and treatments to prolong life when there is no prospect of recovery. Implicit in such a decision is a determination of balance of benefit and burden (i.e is the discomfort of continuing therapy balanced by the benefit to the patient?)
There is a wide range of literature discussing different perspectives of end of life care in Islamic nations. Based on sharia law and Quran everything possible must be done to prevent premature death. There is however literature and interpretations of Islamic laws in which care must not hasten death, but to abstain from overzealous treatments.
It is also important to note the cost associated with these lengthy ICU stays is partially absorbed by subsidized government healthcare. In a country with high morbidity and mortality rates in rural areas, the costs from impractical ICU care could more effectively be redistributed.
I plan to pursue this topic further professionally; however more importantly I hope sharing this experience opens up a dialogue among our own families and community regarding end of life perspectives. I believe in life and death with dignity and to honor an individual’s preferences. There needs to be more awareness, cultural understanding and re-evaluation of guidelines in approaching end of life care in Iran. Our grandparents and families deserve a peaceful and dignified death.
Note: My love for my aunt and challenges associated with the process inspired me to research this matter extensively. The information provided here is based on my own experience, personal and professional research and discussion with religious scholars and critical care physicians. I welcome feedback and any insights from the community.
This is the kinda blog of which we need a lot, and I mean a lot on this site. I only hope it will stir up a "lively" debate among our learned friends...
Thank you for sharing this.
"After the upheavals of 1979 her only son moved to the United States"
It is really sad for a single mum bringing up her only child without a father then her son decides to leave and go. so typical of us.
He had to.
This is a complex problem to which there is no right solution; otherwise it would be taught to all physicians the way Krebs Cycle or the drug of choice for an infection are. Therefore, as "obvious" as the right course of action in such a scenario may seem to a professional healthcare provider, there are numerous factors that enter the decision making on the part of the patient and/or the family that do not lend themselves to hard and fast rules, yet are as important as those that do. A short list of such factors includes the family dynamics; available resources; level of expertise of healthcare providers and education of the patient and family; level of mutual respect and trust between the various stakeholders; religious and spiritual beliefs; and many, many others. It is due to these factors that there is often a degree of frustration on both sides -- the patient/family vs. healthcare team -- with respect to what the "right" course of action should be... a dilemma that unfortunately I have personally experienced on both sides of this type of scenario. Nevertheless, I am encouraged that such discussions in forums like this as well as among scholars and practitioners are happening with an increasing frequency and intensity. The emerging field of Shared Decision Making (SDM) is an area of active research and development in the medical community. It appears promising in terms of optimizing treatment plans through evidence-based practices while educating and incorporating the unique goals and values of an individual patient, the family, and the community in order to achieve outcomes that are considered satisfactory to the specific stakeholders on a case by case basis. Although I am not very familiar with the state of affairs in Iran with respect to this topic, I imagine the key elements are universal issues and the more relevant local factors are precisely where SDM can prove to be an effective tool if properly designed and implemented.