Palliative Care in Children, why it is less known and why do we need to raise awareness more?

(Credit: Unsplash)

This article was exclusively written for The European Sting by Mr. Muhsin Öznaneci, currently an intern doctor who works in Göztepe Prof.Dr. Süleyman Yalçın Hospital (formerly Göztepe Training and Research Hospital) affiliated with İstanbul Medeniyet University, İstanbul, Turkey. He is affiliated to the International Federation of Medical Students Associations (IFMSA), cordial partner of The Sting. The opinions expressed in this piece belong strictly to the writers and do not necessarily reflect IFMSA’s view on the topic, nor The European Sting’s one.

If you are out of the healthcare community, you do not have the chance to know what “palliative care” is.  WHO defines palliative care (PC) as the prevention and relief of suffering of adult and pediatric patients and their families facing the problems associated with life-threatening illness.1 It is maintaining life comfort as much as possible at a chronic or terminal condition. This term has been on the media relatively newish but pediatric palliative care (PPC) is basically non-existent, even in the medical curricula.

I would like to talk about my country, Turkey.  In 2014, the Turkish Ministry of Health (TMH) published guidelines entitled “Directives for PC Services Implementation Procedures and Principles” to regulate the standards of PC. Although the number of PC units for adult patients increased rapidly after 2015, similar improvements did not occur in PPC. There are four recently established PPC units, and their inpatient hospital services take care of non-oncology PPC patients. Although there is still no PPC unit dedicated to children with cancer in Turkey, almost all pediatric hematologists and oncologists throughout Turkey provide some form of PC at their inpatient or outpatient oncology clinics. PPC should be included in the national health policies and education of healthcare workers.2 For a country that has a population of app. 84 million people, it is extremely low and needs improvement. Despite the ongoing need, we know that there are many children suffering needlessly around the world who have no access to PC services. Utilization of global concepts such as SHS and of global platforms such as UHC can help to focus advocacy efforts and ensure that they are centered around key and tractable issues. Not only can this offer support to governments in the roll out of UHC, but also in incorporating CPC as an essential component.3

 I have heard of this term in a tweet, while #MedTwitter was arguing about the long-term care of chronic patients and I have to say, I was ashamed of not knowing this term before I read a conversation about it on Twitter coincidentally. There are detailed guidelines and even a curricula suggestion from WHO about Integrating PPC on regular practice I did not hear of.

What do we have to do then? We need to start from the healthcare professionals. PPC must be included in Medical School Core Curriculum and there should be courses and rotations as much as possible for pediatricians and pediatric surgeons. If healthcare professionals learn and embrace the concept, they can start to raise awareness and convince authorities to invest more in PPC. If we know much better, we can start to convince people that palliative care is more than diminishing the pain and children will have better outcomes. Also, it is widely misunderstood that hospital wards are the only places for palliative care, palliative care starts at home, with parents accepting and embracing the diagnosis.

To sum up, we need a lot more focus on PPC and we need to start from somewhere and maybe educate ourselves and the community first. We need to form policies, prepare campaigns but mostly, embrace the concept.

About the author

Muhsin Öznaneci is currently an intern doctor who works in Göztepe Prof.Dr. Süleyman Yalçın Hospital (formerly Göztepe Training and Research Hospital) affiliated with İstanbul Medeniyet University, İstanbul, Turkey. He was a national Team Member in Turkish Medical Student Association and worked in various SWGs at IFMSA. He is currently interested in anti-vaccination, Pediatric Oncology, and is an active member of Medical Students Working Group in Turkish Psychiatric Association. He also has 2 articles on European Sting about Misinformation in Social Media and another one about SDG’s. You can check it out.

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