Sharing the Care: Palliative Care, Human Rights and Legal Services in Georgia

26 Nov, 2014

The Open Society Georgia Foundations (OSGF) supports palliative care patients in the country by facilitating pro bono legal services. Nino Kiknadze, Law, Media and Health Initiative Coordinator for OSFG, writes about her personal experience of the need for integration of legal services and palliative care.

“For me, the most significant lesson in this project… is the critical importance of remaining a human being caring for others, no matter the circumstances and until the very end.”

People living with life threatening illnesses often face complicated legal questions, such as those relating to the disposition of property, planning for dependents, accessing social benefits, and combating discrimination. Also, caregivers may be particularly vulnerable to human rights abuses. 

In Georgia, the Open Society Foundations has offered support by facilitating pro bono legal services. These services are expensive in Georgia and are usually beyond the means of palliative care patients, many of whom have undergone long-term, intensive and costly treatment, leaving few funds for legal services. 

In October 2008, OSGF held an introduction session on palliative care for legal groups. Kordzadze Law Office, a prestigious Georgian law firm, dedicated one of its lawyers to visit local hospices and remain on call to meet with patients (see Tamar Ezer’s article: Uniting Lawyers with Hospices in Georgia).

Nowadays, lawyers from Kordzadze Law Office, Assatiani Law Office and independent lawyers frequently assist hospices in setting down various issues. So far, approximately 85 patients have used the ‘Free Legal Aid’ service.

A personal story

In 2004, my uncle fell seriously ill. He was diagnosed with lung cancer. Like many other people, he was sent to the Palliative Care Service at the National Centre of Oncology Hospital. On my first visit, the notice on the door immediately caught my eye: “The Hospice of Palliative Care, Open Society Georgia Foundation”. Up until that very moment I had no idea 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 an inpatient hospice facility or at home. In the hospice, people are provided an extra layer of support through focusing on pain relief and psychosocial support – whatever the diagnosis. 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 Open Society Georgia Foundation (OSGF) had a major role in creating this oasis.

That same year I went to work there. I am happy to be working with the OSGF and the wonderful team at the OSF’s International Palliative Care Initiative (IPCI) and Law and Health Initiative (LAHI). The collaboration started in 1999, when OSGF and IPCI supported the establishment of palliative care as a separate specialty and, until the present day, has trained hundreds of doctors, caregivers and nurses in pain management (trainings were held both in Georgia with the help of foreign experts and abroad). 

Special clauses on palliative care were included in three laws of Georgia: the ‘Law on Patients’ Rights’, the ‘Law on Medical Activities’ and the ‘Law on Healthcare’, and sub-legislative normative acts were enacted as well, laying the foundation for the implementation of palliative care norms. A home care service was established that cares for about 2000 patients per year.

The introduction session on palliative care for legal groups held by OSGF in October 2008 enabled palliative care patients to enjoy free legal services to address critical legal concerns. Common legal issues faced by patients include the distribution of property, safeguarding family members, and accessing state benefits. Lawyers help them to get information and quite often help them to prepare documents for state insurance. Additionally, lawyers provide legal aid not only to patients, but also to hospices to address issues such as cooperation with insurance companies or exploration of the existing state programs.

A year later, OSGF organized a public launch of the initiative to interest additional law firms. At the launch, a documentary film highlighted the dramatic case of one of the first patients benefiting from the program. The Kordzadze Law Office helped reunite a cancer patient with her husband, who was serving a prison sentence, four days before her death. After the launch, two additional law firms, as well as independent lawyers, volunteered to provide free legal services to palliative care patients (see Tamar Ezer’s article: Uniting Lawyers with Hospices in Georgia).

We have prepared and published brochures about human rights, legal services and palliative care, distributed to all hospices and available in Georgian from the OSGF website. In the brochures there are contacts of law offices and patients are put in contact with them when needed.

For me, the most significant lesson in this project, apart from professionalism and the learning of new skills, is the critical importance of remaining a human being caring for others, no matter the circumstances and until the very end.