Living and dying in pain: it doesn’t have to happen

Saturday, 8 October is World Hospice and Palliative Care Day, a unified day of action to celebrate and support hospice and palliative care around the world. The day, organised by the Worldwide Hospice Palliative Care Alliance (WHPCA), aims to share their vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues, to raise awareness and understanding of the holistic needs of people living with a life limiting illness and their families and to raise funds to support and develop hospice and palliative care services around the world.

The theme for 2016 is Living and dying in pain – it doesn’t have to happen which addresses the serious issue of improving access to controlled medications for pain management. This year WHPCA has published a Toolkit specifically for palliative care advocates to use when approaching national decision makers and the general public to remove barriers that persist and continue to prevent responsible access to effective pain medication for all. 

Children in pain
Recently, ehospice republished the harrowing story of Mahesh, a four-year-old child from India with cancer who lived almost his entire life in excruciating pain, and died on his fourth birthday. Sadly, he died before palliative care professionals, who’d heard of his plight through a newspaper article, could get to his bedside to allow him and his distraught parents to at least experience a dignified and pain free death. 

In 2014 we published an article about four-year-old Abdurahmane, suffering with renal cancer in Senegal. His story, broadcast by the BBC in their programme, Unreported World, showed how he was one of those ‘fortunate’ enough to have access to the pitifully inadequate supply of morphine in that country and so did not have to die in pain.  

In yet another disturbing tale out of India, in June 2014 ehospice reported on the death at the hands of his parents of a nine-year-old boy, Karthik, simply because they could no longer endure his unrelieved suffering. They then took their own lives.

Babies feel pain
In April 2015, researchers finally confirmed what parents have always known: that babies feel pain much like adults. The ehospice article on this welcome research stated that a new brain scan study has discovered that when exposed to similar painful stimulus, the brains of babies ‘light up’ in a very similar way to adults which suggests that babies experience pain much like adults. 

Childhood cancer pain
In an ehospice article on pain as a result of childhood cancer, Liz Burns, Operations Manager at World Child Cancer wrote that we have a moral obligation to do our best to ensure that no child dies in pain. She writes, “More than 80% of the world’s children live in low-middle income countries, where survival rates for children with cancer can be as low as 5%. In these countries tens of thousands of children die needlessly every year, most without any effective pain relief.”

What are the barriers related to children?

Even in countries where opioids are available for adults, additional barriers may still hinder access to pain management for children. In addition, the impediments that prevent adults in pain from receiving adequate pain management and access to opioids, are applicable to children.

Children experience additional impediments to access, including those related to their age, their inability to describe their pain, cultural factors that do not allow them to speak for themselves, lack of professionals with the necessary skills to assess pain in children and lack of paediatric formulations of essential medications for pain management. 

What is being done for children?

The International Children’s Palliative Care Network (ICPCN) works vigorously to address the barriers affecting children’s ability to access pain relief. Up-to-date resources on pain relief for children can be accessed and downloaded from the ICPCN website including the 9th Edition Basic Symptom Control in Paediatric Palliative Care as well as the World Health Organization (WHO) Guidelines on persisting pain in children. 

The ICPCN e-learning module on pain relief for children, linked to the WHO Guidelines, is a free resource available in English, French, Spanish, Portuguese, Russian, Serbian and Dutch. 

Advocacy
ICPCN has also worked to address these barriers through advocacy up to the highest level, having held a side event at the 2015 World Health Assembly which focused on the importance of pain management and is part of an International Advocacy Group, working together with other organisations such as the International Association for Hospice and Palliative Care (IAHPC) and the WHPCA to address the barriers at the international level.