Sharing the Care: Palliative Care and Human Rights

14 Jun, 2013


by Nina Kiknadze, Public Health Program Coordinator, OSGF

In 2004 my uncle fell seriously ill and was diagnosed with lung cancer. Like many other people, he was sent to the Palliative Care Service at the National Centre of Oncology Hospital. The very first thing that caught my eye during my first visit was the notice on the door which said:  “The Hospice of Palliative Care, Open Society Georgia Foundation”.

Up till that moment I had not had a clue what either “hospice” or “palliative care” meant or even what the “Open Society Georgia Foundation” was.

Later on I learned that palliative care is given to terminally ill people by a team of doctors, nurses, psychologists, and other specialists at either special facility called Hospice or at home.  It is specialized medical care for terminally ill people providing  an extra layer of support  through focusing on pain relief, stress relief  -whatever the diagnosis. And as a final goal the quality of life for both the patient and the family is improved.

My uncle spent most of his remaining time on earth in the hospice, where the doctors relieved his pain, kept him calm and encouraged those who surrounded him.

I was amazed by this extraordinary group of doctors, their multidisciplinary approach and the family-centered environment. As I learned later in 2006, the Foundation had a major role in creating this oasis.

That same year I went to work for OSGF. As I became better acquainted with the concept of palliative care, I was extremely proud when I found out that the doctors, who looked after my uncle so well, had been trained in pain management with the help of the Foundation. The hospice, with a truly family environment, was also created and supported by the Foundation.

In 2009, I was delighted to agree to coordinate the section on palliative care along with The Law on Media and Health. Later, in 2009, with the Law, Media and Health initiative, with pleasure I agreed to coordinate Palliative Care direction, since for me as a lawyer, protecting patient’s rights is interesting and important in all respects, especially when it comes to protecting the rights of those who were in need of palliative care.

While working at the Foundation I had a chance to visit many hospices worldwide but I have to note with pride that one of the most remarkable is the Transfiguration Mercy Centre and Homecare Service in Tbilisi.  Mother Nino, the nurses, and each of the working staff care for the patients as if they were their own family members.

I am happy to be working with the OSGF. In 1999, the Foundation was the first to establish palliative care as a separate specialty and, until the present day, has trained hundreds of doctors, care-givers and nurses in pain management (trainings were held both in Georgia with the help of foreign experts and abroad).

The Foundation helped establish palliative care in several ways: as a separate discipline in higher educational institutions; by financial support to hospices; and in laying the legislative foundation for and implementing palliative care laws. Special clauses on palliative care were included in three laws of Georgia: Law on the Rights of Patients, Law on Medical Practice and Law on Protection of  Healthcare and sub-legislative normative acts were prepared and implemented as well.

The Foundation also established a home care service that cares for about 2,000 patients per year. Thanks to OSGF support of the annual budget, since 2010 palliative care patients can enjoy free legal aid and services. I am happy that I have been granted an opportunity to be part of these activities together with all those people and organizations who have helped it succeed, including First Lady Sandra Roelofs, who has helped at every stage of development of this field.

Adequate pain management is an indispensable part–and the most important component–of palliative care. In the 21st century the drugs and expertise exist to virtually eliminate physical pain although in our country this still remains a problem.

In 2011, through the support of the Foundation, the campaign “Let’s Live without Pain” started. The aim of the campaign is to create an environment in which every citizen will be able to access effective and modern painkilling treatment.

Despite many difficulties and obstacles, as a result of the campaign and with the help of the experts in palliative care, Georgia was provided with rapid-action pain-relievers in 2012. Through active advocacy we managed to prepare and implement guidelines for pain management. Thousands of people learned that they can ask for painkillers because living without pain is a fundamental human right.

For me, the most important lesson in this program is that apart from professionalism, education and other skills, the main thing is to remain a human caring for other human beings.