The power of narrative – A story from Turkey

Dr Serpil Ozsezgin, Izmir, Turkey

Dr Serpil Ozsezgin

Dr Serpil Ozsezgin

I am an anaesthesiologist working in intensive care and a pain practitioner. For the past decade, I have also worked as a volunteer physician with cancer patients who need palliative care at the end of their lives.

My opinion is that narrative stories can shape our previous experiences in the light of today’s circumstances and change levels of perception of those who read them. We can create awareness with narrative stories. 

Dying: the difference between east and west
My uncle, DHS, was diagnosed by the Mayo Clinic in the USA as having mesethelioma and was recommended to have two treatments: multimodality therapy (extrapleural pnuemonectomy + radiotherapy and chemotherapy) and radiotherapy and chemotherapy without surgery. The majority of studies has shown that the survival rate for both treatments is two years. After surgery, he was in intensive care for four weeks and later received radiotherapy and chemotherapy. Over the next year and a half his quality of life was poor. Eventually his physician, accompanied by his psychologist, told him that he had only six months at most to live. There being no further treatment available, the doctors told him to go back home to Turkey. But having come back home, my uncle lost his will to live.

The Blue Mosque, Istanbul. (By Bjørn Christian  via Wikimedia Commons)

The Blue Mosque, Istanbul. (By Bjørn Christian via Wikimedia Commons)

 

He was left with only one lung because of the invasive surgery and had also suffered from many side effects caused by the radiotherapy and chemotherapy. As the cancer spread to the skin in the final stages of his illness my uncle felt a great deal of pain caused by the earlier procedures that he had undergone – this was the most painful stage of his cancer.

In the USA, my uncle had received high doses of opioids via fentanyl patches (DURAGESIC® 300 mcg/h) for 72 hours. But in Turkey, the maximum dose of fentanyl allowed by law is 150 mcg/h for 72 hours.  Because of the greatly reduced medication In Turkey my uncle was in the most unbearable pain.

Stories feed one another, unite and intersect with each other. As I listen to each patient’s life narrative about the problems they have experienced I am reminded of previous cases, and I notice how different elements are transferred and relived in other people’s stories.

Unfortunately, there is no palliative care specialty in Turkey. Hospital staff are not organised or trained to provide palliative care and hospitals do not have policies on end of life care or pain management. However, narcotics are often available to meet the needs of dying patients with chronic pain, and medical oncology units and departments of algology at major hospitals do provide pain control and symptom relief. Most of the interested oncologists and pain specialists are working in the relatively few university hospitals.

I would like to work in pain relief and palliative care. My main goals are to improve the use of opioid medication, to introduce a palliative care programme to my country, and to see it developed in other parts of the world through culturally appropriate programmes of education and training.

Making the case for palliative care: stories from across the world
You can read other ‘best or worst case stories’ that show the need for palliative care on the web pages of the Prague Charter

Prague Charter QR EAPCwebsiteThe Prague Charter demonstrates how we can all work together to advocate access to palliative care as a human right. Please visit the web page and think about sharing your story. (There are full instructions on how to submit your story on the web page). 

Prague Charter QR Avaaz

Please support the Prague Charter by signing the petition. We’ve almost reached 5,000 signatures but please help us to get 10,000!

 

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One Response to The power of narrative – A story from Turkey

  1. from Doctor/Professor Luisella Magnani – a Linguist from Italy
    Dear Doctor Serpil Ozsezgin,
    the Fullness of Your sentence which contains the wholeness of this text: “Stories feed one another, unite and intersect with each other”. And this happens because the power of language, the power of thought and the power of action create the perfection of a triangle wherein the Human Being is in the middle. He is in the middle with his suffering and pain, and he asks for being understood and feeling understood. And being understood and feeling understood means that his suffering and pain are cared-cradled-and-loved.
    I am a Little Child’s aunt who died in 2010, at 19 months, because of the AcuteLymphoblasticLeukemia. His pain was great. It was so great. I want to give my studies begun for Him in the Non-PharmacologicalCare to All the PreverbalOncologicChildren in the World.
    Being-in-the-Word-we-say, being-in-the-Sign and Gesture-we-shape is very important for the OncologicPreverbalChild, Who lives His Pain inside His so private world.
    My best regards to You,
    Luisella Magnani

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