Human rights in patient care: A themed issue

Tamar Ezer

Health and Human Rights 15/2

Published December 2013

A man with mental disabilities is locked up in a mental health facility, forcibly medicated, and held in unhygienic conditions.

Hospital staff publicly disclose a patient’s HIV status.

A drug user is denied anesthesia during a medical operation.

The doctor at a health care facility refuses to treat a sex worker, throwing her out with a gaping wound.

Women living with HIV, Roma women, women with disabilities, and transgender persons are sterilized without their consent.

Unfortunately, these abuses of patients are not uncommon. At the same time, health care providers may also face rights violations themselves, such as unsafe working conditions or government sanctions for providing evidence-based care.

This issue of Health and Human Rights has a themed section on these concerns. The articles explore various facets of “human rights in patient care,” or the application of human rights principles to the context of patient care. The first piece, which Jonathan Cohen and I co-authored, lays out the human rights in patient care framework. It provides a typology of critical human rights applicable to patients and providers and differentiates the concept of human rights in patient care from other paradigms commonly applied to health care settings, such as the right to health (which overlaps with human rights in patient care in certain ways), patients’ rights, patient safety, and bioethics.

Next, a series of pieces from Macedonia, Georgia, and Armenia assess gaps in human rights in patient care protection in each of these countries, examining both the legal framework as well as its implementation. In Macedonia, Filip Gerovski, Gabriela Alcheva, and Leo Beletsky explore the discrepancy between Macedonian law, which complies with international best practice in protecting patient access to care, information, and compensation, and the lack of implementation, disproportionately affecting marginalized groups, such as women, Roma, and rural residents. In Georgia, Nino Kiknadze and Leo Beletsky highlight gaps in key patient protections, such as informed consent and confidentiality, as well as the complete lack of attention to the rights of providers. In Armenia, Violeta Zopunyan, Suren Krmoyan, and Ryan Quinn point to the need to make pain relief medication more accessible to patients and to set up procedures to resolve disputes and address violations.

While the above pieces focus on legislation and provide recommendations for law reform, the fifth piece by Susie Talbot from the International Centre for the Legal Protection of Human Rights (INTERIGHTS) shifts to litigation as a means to ensure state accountability and encourage systemic change. It focuses specifically on breaches of medical confidentiality, a pervasive problem in many Eastern European and Central Asian countries with serious implications for vulnerable and marginalized populations.

The final piece, which Judy Overall and I co-authored, turns to education. It reflects on an Open Society Foundations initiative, which supported higher education courses on human rights in patient care in faculties of law, medicine, and public health in nine Eastern European and Central Asian countries. This piece indicates the importance of an interdisciplinary approach, integrating practical examples and exercises, bringing in marginalized voices, and linking to provider rights and challenges. It further highlights the role of faculty champions within each university, who shaped this initiative to meet local needs.

Building expertise in human rights in patient care must, of course, go beyond academia. Three of the authors of the above gaps analyses—Gabriela Alcheva, Filip Gerovski, and Violeta Zopunyan—are graduates of a fellowship with a focus on human rights in patient care. This fellowship places recent law graduates from Eastern Europe and Central Asia at leading nongovernmental organizations in their countries, where they coordinate the development of materials, trainings, litigation, and advocacy on human rights in patient care (see http://www.health-rights.org/fellowships/ for additional information). A new generation of advocates with the skills to work at the intersection of law and health is critical to address violations experienced by both patients and providers.

We also honor the memory of Dmytro Groisman (affectionately known as “Dima”) with this themed section, a doctor, lawyer, and passionate human rights defender who helped inspire the concept of human rights in patient care and worked tirelessly to ensure protection of these rights. In fact, the Ukraine case on confidentiality of patients’ medical information, which Susie Talbot discusses in her article, was a case Dima litigated.

We must continue to build on Dima’s legacy and ensure health care settings become true places of care, everywhere and for everyone.

Tamar Ezer, JD, LLM, is the Senior Program Officer at the Law and Health Initiative of the Public Health Program at the Open Society Foundations in New York, New York.

Please address correspondence to Tamar Ezer, Open Society Foundations, 224 West 57th Street New York, New York 10019 USA, email: tamar.ezer@opensocietyfoundations.org