Fundamental to health and human dignity, palliative care is a basic human right. As a holistic approach to the treatment of progressive illness, palliative care supports quality of life for both the patient and their family, and addresses physical, psychosocial, spiritual, legal, and rights issues. These legal and rights issues may include anything from assistance accessing social security benefits and managing property and inheritance issues, to advocating for appropriate access to essential palliative care medications.
In Armenia, Ukraine, Romania and Georgia, lawyers work in multidisciplinary medical, legal and psychosocial teams to identify and advocate for patient and family rights. A medical-legal partnership incorporated as part of a comprehensive palliative care model helps to effectively address unmet health needs and resolve related legal issues faced by patients with life-limiting diseases. And while each country has a unique story, professionals recognize the common challenges of limited access to appropriate pain medication, a lack of trained specialists, and obstructive legal frameworks.
This year, the well-known Hospice Casa Sperantei in Romania is working to document the need for legal support for patients and families. With this evidence, the hospice will make a case to formalize legal support for patients as part of their comprehensive spectrum of palliative care services.
Codruta Popa, social worker at Hospice Casa Sperantei, said: “Working at the centre of a multidisciplinary network of health and legal professionals enables us, the social workers, to support the patient to navigate the complex array of legal and social issues that inevitably accompany serious health issues.”
In Georgia, three law firms are the big heart of legal support for palliative care. Lawyers from Asatiani & Attorneys at Law, Kordzadze Law Office, and Migriauli & Partner, give their time – pro bono – to resolve patients’ legal issues and to provide legal advice and representation to hospices. An important case, currently being heard by the Tbilisi City Court involves the hospice challenging an attempt to retroactively cut funding vital to its operations.
Armenia showcased a unique partnership of NGOs, doctors and lawyers making strong progress in advancing patient rights in palliative care settings. Remarkable doctor-turned-human rights advocate, Dr Narine Movsisyan, is at the forefront of this work. Nationally recognised for her expertise in anesthesiology and intensive care, Dr Narine visits palliative care wards and clinics to advocate for adherence to global standards in pain relief. She said: “Appropriate pain medication is key to ensuring patient’s quality of life – and our duty as doctors.”
Dr Narine is part of the partnership comprised of Real World Real People, Public Information and Need of Knowledge (PINK) and in-house lawyers. Together they use the law and human rights to serve their patients, advocating for the implementation of national protocols for pain relief, and for a rights-based regulatory framework for palliative care.
In Ukraine, lawyers work with the Office of the Ombudsman to monitor conditions at hospices and healthcare facilities. They file reports with the local and national departments of health. These reports are then used to push for improved conditions, and compliance with national regulations and human rights norms. A hospice facility in Western Ukraine responded positively to a recent monitoring visit, committing to improving recommendations and guidance on pain relief for patients discharged with prescription opioids.
United in their commitment to palliative care, lawyers and healthcare professionals used the time together in Yerevan to strategize around common objectives and discuss gathering evidence for use in advocacy for reform. Participants agreed the convening was thought-provoking and motivating, and valued the opportunity to hear about work across the region.
These inspiring professionals are the vanguard of palliative care as a human right – their daily work pushes boundaries, and makes significant improvements in patients’ dignity, well-being, and quality of life.
For further information please contact:
Naomi Burke-Shyne, Open Society Foundations naomi.burkeshyne@opensocietyfoundations.org
Anahit Papikyan, Open Society Foundations-Armenia panaida@osi.am
Nina Kiknadze, Open Society Georgia Foundations nkiknadze@osgf.ge
Kseniya Shapoval, International Renaissance Foundation shapoval@irf.kiev.ua
Leave a Reply