| Monthly newsletter for the Baobab Paediatric
Palliative Care Virtual Resource Centre
www.baobabppc.org.za 21 March 2010
FROM THE ADMINISTRATORS DESK…
Welcome to the first “Baobab Treemail”: the monthly newsletter for the Baobab Paediatric Palliative Care Virtual Resource centre. Those of you who are survivor fans will remember that the survivors receive “treemail” to inform them of their next challenge or reward. This monthly newsletter hopes to assist professionals working in the field of paediatric palliative care with little bits of information to meet the challenges they may face in caring for children with life limiting or life threatening illnesses in resource constrained settings.
For some this may seem like a difficult and challenging field to work in, but it comes with great rewards. It is an honour and a privilege to be able to assist families caring for children with palliative care needs knowing that there is never “nothing that can be done” even in the face of an incurable illness. By applying the principles and philosophies of palliative care we can help to ease suffering and bring families closer together at a difficult time in their lives.
This first newsletter is to be circulated on Human Rights Day together with the launch of the Virtual Paediatric Palliative Care Resource centre. As this is the first newsletter an overview of the different
parts of the letter will be presented. We hope to make this newsletter as interactive as possible and to relate it to what’s happening on the website.
TOPIC OF THE MONTH: PALLIATIVE CARE FOR CHILDREN: A BASIC HUMAN RIGHT
“There can be no keener revelation of a society's soul than the way in which it treats its children”.
Nelson Mandela
Today is Human Rights Day: a public holiday in South Africa. On this day in 1960 the police killed 69 people in Sharpeville, Soweto who were participating in a protest against the pass laws. Many of the protesters were shot in the back and their cold-blooded deaths made world headlines. Four days later the South African government banned black political organizations; many leaders were arrested or went into exile. During the Apartheid era there were human rights abuses by all sides; Human Rights Day is but one step to ensure that the people of South Africa are aware of their human rights and to ensure that such abuses never occur again.
It’s a sad historical fact that it has always taken human rights abuses and atrocities to make people aware of the need to uphold these rights. In fact the first comprehensive global expression of human rights (The Universal Declaration of Human rights) adopted in Paris by the United Nations General Assembly in 1948, arose directly out of the Nuremburg trials during which war criminals were tried for human rights violations committed during the Second World War.
Article 5 of this declaration states that “no one shall be subject … to inhuman or degrading treatment ….”. Activists advocating for proper pain management and palliative care have used this article to argue the case for improved pain management and access to palliative care as a fundamental human right. In 2004 the International Association for the Study of Pain (IASP) and the World Health Organisation (WHO) sponsored a “Global Day against pain” highlighting the need for improved pain management across the world. In 2008 the theme for the Global Hospice and Palliative Care Day was “Palliative Care as a Basic Human Right”.
Despite all this activity there are still many children and adults today whose right to be pain free and to receive palliative care is infringed on a daily basis. Harsh drug trafficing laws in some countries make it difficult for patients to access opioids for medicinal use. Even in countries where morphine is available patients may not be able to access it due to a lack of prescribers or fears around its use (opiophobia). When it comes to babies and children, opiophobia is even more prevalent with many believing that the drugs are “too strong for them” or even worse that “they don’t need them because they aren’t able to feel pain!”
Although many will agree that we all have a right to live, few may acknowledge that we also have a right to die with dignity when death is inevitable. “There is a moral responsibility to give those who leave life….. the same care and attention we give those who enter life” (Stjernsward and Clark).
Fortunately there is a little uprising in the developing pain and palliative care fields for children. It started with a “lone cry” for the “voices of children to be heard” at a conference held in Korea in 2005. The Association for Children with life threatening and life limiting illnesses (ACT) and the International Children’s Palliative Care Network (ICPCN) have developed charters on the palliative care rights of the child and there are now three academic chairs in Paediatric Palliative Medicine in the world.
Whilst it’s good to have international organizations, declarations and academic chairs, meeting the right of the child to be pain free and to access palliative care starts at the bedside. It was the Sowetan on the street that was the catalyst that led to the fall of apartheid. If every healthcare professional working with children spent a little time thinking about how to ease pain and relieve suffering as part of their everyday job, the fundamental right of every child to be pain free and to access palliative care would soon be realized. If you’re interested in making this commitment, then stick around under the shade of the baobab tree!
FORUM OF THE MONTH:
Future newsletters will highlight an interesting discussion that took place (on the forum page) around a “clinical enquiry” that was submitted to the website by a health care professional caring for a child with a life threatening or life limiting illness.
Visitors to the Baobab PPC virtual resource centre are welcome to ask a palliative care question or for advice on managing a palliative care patient on the “clinical support page” of the website. With permission from the patient (whose identity will be protected) and the professional concerned, discussions will be held on the website’s forum page. Forum participants will need to subscribe to participate in these discussions and the forum will be moderated by the website administrator. Expert opinions will be sought from leaders in the field locally and internationally when necessary.
FACT SHEET OF THE MONTH:
According to Wikipedia a fact sheet is a “presentation of data on any subject from any biased or objective viewpoint in a format emphasizing brevity, key points of interest and concern, a fairly spartan design, and a general desire to convey the most relevant information in the least amount of space”.
Medical Fact sheets are useful summaries that can be used to address common issues encountered in the clinical setting. Fact sheets may be developed for patients or for professionals.
Fact sheets will be developed by the website administrator in consultation with other professionals and in response to common clinical queries received through the clinical support page of the website. Eg: Fact sheet on “morphine myths and facts in children”.
This newsletter will contain a link to the most useful Paediatric Palliative Care fact sheet developed during the preceding month.
FEATURED CHILDREN’S HOSPICE AND PALLIATIVE CARE ORGANISATION.
This is your spot. Each month a children’s hospice or palliative care programme will be featured. Please tell us what you are currently doing or would like to do to improve palliative care for children in Africa!
CONFERENCES AND EVENTS RELEVANT TO PAEDIATRIC PALLIATIVE CARE:
Each month upcoming conferences and events relevant to paediatric palliative care will be listed.
Any feedback received from website visitors about recent events will also be highlighted in this section.
WHAT’S HAPPENING IN APRIL?
When: 11- 16th April
Where: Heimvolkschonchschole,
Haltern en See
Germany
What: International Multi-professional Paediatric
Palliative Care course
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