In this guest blog, Dr Nima Ghadiri describes the harrowing experience of the end-of-life care his grandmother received in an Iranian hospital, and the betrayal of the principles of bioethics, which were first identified many centuries ago by Iranian polymaths, including Avicenna and Razi.

My beloved grandmother and closest friend Batool Sepassi died in an Iranian Hospital ICU (Intensive Care Unit) following a short illness.

During the course of a viral illness, she became increasingly short of breath and had to be admitted to a local private hospital. She had a chest infection and was taken to the intensive care unit accompanied by close family. At this point the family had separated to go to the payment desk, and my grandmother was taken to ICU, though no medical history was taken nor treatment started until payment was organized (the privilege of private healthcare).

There were some major flaws in treatment. Having been admitted with a chest problem, it took 30 hours for a chest consultant to see my grandmother, though not without a battle — we were told “this patient is not on my list” — and a serviceable X-ray was only taken the following day.

My family was only allowed an hour a day to visit my grandmother, which was extremely hard given that she thrived on closeness to family and friends. My close relatives stayed outside all day the ICU to be able to glance at my grandmother from a distance and hear her calling out for them. This was a traumatic experience, particularly when they heard the expressions “Saaket” or “Khafeh Sho” (“Shut up”) from my grandmother when she was undergoing procedures. My grandmother loved to communicate and form bonds with people, and appreciated having her close ones hold her hand during medical procedures. During all of her stay, her arm was outstretched to hold someone’s hand, but there was no one there and her hands were eventually fastened to the bed.

The course of the disease was unpredictable, and ultimately a poor prognosis was given, i.e. the chances of my grandmother’s survival diminished. During this period, interactions with nurses and doctors were punctuated by disregard and dismissal. For example, when one relative noticed that the nebulisers were inserted in my grandmother’s eyes rather than her nostrils (where they belong), this fact was dismissed with a “oh, her oxygen was high”. There were a few good doctors and nurses, but they were conspicuously outnumbered by the poor ones. When my cousin objected against intubation (insertion of a tube into the lungs) for the last few hours of life, instead of explaining the rationale, the doctor shouted at her “Do you want to kill your grandmother?” It took a lot of pressure to prevent the ICU team from doing a completely needless invasive procedure (kidney dialysis) with just a few hours of life remaining and kidney test results that had been unchanged for years.

Nevertheless, simple measures such as giving my grandmother something to drink were considered a luxury. When my grandmother was deteriorating, no provision was made to allow her to be close to loved ones. She and her family did not want her to be in an intensive care unit, and not only was she kept there against her will during the treatment phase, but she was kept there when she was about to die.

I asked my cousin to connect her to me by video call before her death during the one-hour visiting period. Her eyes were initially closed, but as soon as she heard my voice, they opened wide. Her mouth was entirely bandaged apart from a tube coming out of it, but I could see the outline of her lips moving briskly underneath all the bandages. She wanted to say something, and had never been stopped from talking to me before. She started vigorously shaking her tied arms in an attempt to communicate with me, but then realized her efforts were fruitless and her eyes started welling up with tears. In all my years of knowing her, I don’t remember her crying. She died just over an hour later, curtains drawn and no loved ones around her.

Nothing could have prepared me for this image, which remains traumatically imprinted in my mind. It will be a memory I will never forget. I keep wondering what she wanted to say – was she saying goodbye to me, or asking me to convey a message: to look after my mother, my brother, or help someone desperately in need? Finding the answer to this is a futile quest, but it is a rumination that will, sadly, remain.

Dying alone, with family not allowed to be with her is one thing, but my family were also denied the chance to see her after death. Only after begging were they able to get a brief glimpse of her in the corridor prior to entering the mortuary after challenging the comment, “She’s gone, why don’t you just go now”.

Passing away is an inevitable part of people’s existence, but the environment for this chapter of life is so important. As a doctor who works in the United Kingdom’s National Health Service, I have been well-versed in the importance of dignity in death. But in Iran, a country whose polymaths helped define the early principles of bioethics, it is unfathomable that core bioethical values were denied for such a sweet soul as my grandmother, and potentially for others. These principles include Non-Maleficence — not performing unnecessary procedures that serve just to prolong the patient’s life and often cause distress and pain to the patient — and Autonomy – respect for the desires and values of the patient, including how they want to be treated and how they want to die.

In my grandmother’s case this was with her family around her and without fruitless procedures. Denying someone’s spirit and character so manifestly in their final days and hours is criminal. These sentiments were shared by my family, and indeed being able to spend time with a loved one before and after their death to say goodbye should be a basic right, rather than just being able to observe this sorrowful moment from a distance. It should not be such as Sisyphean effort to spend time with a loved one and find out what happened during a hospital stay, hampered at all stages by a lack of sympathy and empathy alongside a degree of ageism against someone who is perceived as just a bed number rather than a human being.

I remain always indebted to my grandmother for looking after me as a child in the United Kingdom and being someone I could talk to and share my life with for so much of my existence. Even at her age, she had the spirit of someone many decades younger, was full of life and brought joy to so many. She shared all she had with charity and those less fortunate than herself. Strangers often commented on how sweet and bright she was and I used to talk to her about films, technology and current affairs. She remained a fountain of wisdom and I could not have dreamt of a better grandmother. Her grandchildren remain traumatized by the manner in which she has gone, and the suffering and abuse that she endured. Because she was such a positive and life-loving soul, I do not want the final page of her life to be negative. I am not sure how yet, but I know that I would be happy if the discussion arises for Iran, the country of Avicenna, Razi and numerous others, to re-discover what care, particularly at the end of life, means. Perhaps in the future, I will open a palliative care institute in her name.