Human rights in patient care: a special collection.

This piece introduces the special Public Health Reviews collection on human rights in patient care (HRPC). Work on HRPC dates back to 2007 and an Open Society Foundations initiative in collaboration with partners in Eastern Europe and Central Asia. We found that for marginalized groups, health care settings often were places of coercion, punishment, and/or violence rather than of treatment or care. At the same time, health care providers often did not know of their legal obligations and how to incorporate human rights norms in their work. They themselves faced a lack of independence, unsafe working conditions, and sanctions for providing evidence-based care. Laws existed that could potentially address violations, but they were rarely enforced, and most people did not know what they were. HRPC brings human rights principles to health care delivery and addresses the rights of both patients and health care providers. It seeks to translate laws and procedures protecting rights into practical terms, linking national, regional, and international frameworks. The special collection explores various aspects of HRPC, including state responsibility in private health facilities, reproductive health, palliative care, and intersections with public health. It further explores dimensions relevant to particular populations, including Roma, people who use drugs, and transgender persons.

The Neglect of Persons with Severe Brain Injury in the United States: An International Human Rights Analysis.

Brain injury contributes more to death and disability globally than any other traumatic incident.1 While the past decade has seen significant medical advances, laws and policies remain stumbling blocks to treatment and care. The quality of life of persons with severe brain injury often declines with unnecessary institutionalization and inadequate access to rehabilitation and assistive technologies.62 This raises a host of rights violations that are hidden, given that persons with severe brain injury are generally invisible and marginalized. This article highlights the current neglect and experiences of persons with severe brain injury in the United States, analyzing the rights to life, health, benefit from scientific progress, education, freedom of expression, community, family, and equality.

Strategic Litigation to Advance Public Health.

The HIV movement has relied on strategic litigation as an important tool to develop and enforce legal protections critical to health. This experience contains lessons on the potential of strategic litigation to advance public health more generally. Beyond impacting laws and policies, strategic litigation can change practice, breathing life into existing legal rules never implemented. While cases may target a particular law, policy, or practice, indirect impacts beyond a particular court decision on future cases, other branches of government, and the public record may be just as important. Each case is only one step towards change, and a judgment can be helpful in laying groundwork and in other contexts. Strategic litigation can also shape public discourse on issues relevant to health through development of the court's record, integration of expert testimony, and the use of media advocacy. It provides a means to harness the law's potential to construct reality and historical truth, creating an opening for the narratives of marginalized and affected communities. Strategic litigation and social movements can also have a reciprocal relationship, strengthening each other. Connection to a movement gives a case a political dimension, and social movements can assist in identifying issues, supporting clients, mobilizing communities, engaging media, and following up on the implementation of judgments. Strategic litigation, in turn, can galvanize social movements, creating events around which mobilization and media engagement can occur and facilitating coalition-building and the development of leadership.

Legal advocacy as a tool to advance Roma Health.

Roma in central Europe face many violations of their rights, including those that impede their access to high-quality health care. Legal frameworks have the potential to address these violations, whereas legal advocacy services offer a means for enforcement of rights. We undertook key informant interviews with Roma civil society organisations and selected knowledgeable individuals in Macedonia, Romania and Serbia to identify lessons from the development of these services. Achievements were reported in four areas. Legal empowerment, with employment of Roma paralegals was especially effective, increasing awareness of the ability to challenge violations. Documentation of human rights violations is an important basis for advocacy, but does not guarantee redress, and may work best in combination with legal empowerment or international pressure. Strategic litigation can play a key role in removing bureaucratic obstacles that prevent Roma from exercising their right to access to health care. Progress in changing the narrative on Roma in the mainstream media has been limited but examples of good practice exist. Although much remains to be done, Roma groups report that legal advocacy has strengthened their ability to challenge rights violations, thereby enhancing their ability to access effective and responsive care.

Palliative Care and Human Rights: A Decade of Evolution in Standards.

CONTEXT: Human rights standards to address palliative care have developed over the last decade. OBJECTIVES: This article aims to examine key milestones in the evolution of human rights standards to address palliative care, relevant advocacy efforts, and areas for further growth. METHODS: The article provides an analysis of human rights standards in the context of palliative care through the lens of the right to health, freedom from torture and ill treatment, and the rights of older persons and children. RESULTS: Significant developments include the following: 1) the first human rights treaty to explicitly recognize the right to palliative care, the Inter-American Convention on the Rights of Older Persons; 2) the first World Health Assembly resolution on palliative care; 3) a report by the UN Special Rapporteur on Torture with a focus on denial of pain treatment; 4) addressing the availability of controlled medicines at the UN General Assembly Special Session on the World Drug Problem. CONCLUSION: Development of human rights standards in relation to palliative care has been most notable in the context of the right to health, freedom from torture and ill treatment, and the rights of older persons. More work is needed in the context of the rights of children, and human rights treaty bodies are still not consistently addressing state obligations with regards to palliative care.

Legal Support for Palliative Care Patients.

CONTEXT: Palliative care patients face legal issues that impact their quality of life. Legal support, embedded in holistic palliative care services, has developed globally over the last decade to address this. OBJECTIVES: This article aims to trace the origins of legal support for palliative care patients, detail models of legal support, and describe achievements and challenges. METHODS: The article draws on years of work in this area and the available literature. RESULTS: Common legal issues include disposing of property and drafting wills, planning for children, dealing with debt and securing social benefits, and addressing discrimination. Diverse approaches to integrating legal support include developing paralegal skills, accessing skilled legal advice, empowering patients and families, and building awareness of rights among health care workers. CONCLUSION: There is robust and growing acceptance of legal support as a key component of holistic palliative care, and many palliative care professionals are identifying and addressing the legal needs they encounter through mediation, guidance on basic rights, or referrals to a lawyer. Addressing legal problems can contribute to peace of mind, well-being, and the health of patients.

Access to justice: evaluating law, health and human rights programmes in Kenya.

INTRODUCTION: In Kenya, human rights violations have a marked impact on the health of people living with HIV. Integrating legal literacy and legal services into healthcare appears to be an effective strategy to empower vulnerable groups and address underlying determinants of health. METHODS: We carried out an evaluation to collect evidence about the impact of legal empowerment programmes on health and human rights. The evaluation focused on Open Society Foundation-supported legal integration activities at four sites: the Academic Model of Providing Access to Healthcare (AMPATH) facility, where the Legal Aid Centre of Eldoret (LACE) operates, in Eldoret; Kenyatta National Hospital's Gender-based Violence Recovery Centre, which hosts the COVAW legal integration program; and Christian Health Association of Kenya (CHAK) facilities in Mombasa and Naivasha. In consultation with the organizations implementing the programs, we designed a conceptual logic model grounded in human rights principles, identified relevant indicators and then coded structure, process and outcome indicators for the rights-related principles they reflect. The evaluation included a resource assessment questionnaire, a review of program records and routine data, and semi-structured interviews and focus group discussions with clients and service providers. Data were collected in May-August 2010 and April-June 2011. RESULTS: Clients showed a notable increase in practical knowledge and awareness about how to access legal aid and claim their rights, as well as an enhanced ability to communicate with healthcare providers and to improve their access to healthcare and justice. In turn, providers became more adept at identifying human rights violations and other legal difficulties, which enabled them to give clients basic information about their rights, refer them to legal aid and assist them in accessing needed support. Methodological challenges in evaluating such activities point to the need to strengthen rights-oriented evaluation methods. CONCLUSIONS: Legal empowerment programmes have the potential to promote accountability, reduce stigma and discrimination and contribute to altering unjust structures and systems. Given their apparent value as a health and human rights intervention, particularly for marginalized populations, further rigorous evaluations are called for to support the scale-up of such programmes.

Assessing legal advocacy to advance Roma health in Macedonia, Romania, and Serbia.

Across Europe, Roma suffer extreme marginalisation, negatively impacting their health. Many cannot access healthcare at all. For others, the health system is a hostile place. At the same time, good legal frameworks are in place to protect health rights, and there is increasing recognition of systemic violations experienced by Roma. Essential to building on this momentum and closing the gap between standards and implementation is Roma ability to conduct legal advocacy Since 2010, the Open Society Foundations has supported Roma engagement in Macedonia, Romania and Serbia in the following advocacy strategies: i) legal empowerment, ii) documentation and advocacy, iii) media advocacy, and iv) strategic litigation. This article presents a framework developed to evaluate the effectiveness of these efforts and a baseline against which outcomes can be measured in a few years. The evaluation framework provides a qualitative assessment of Roma capacity, accountability for violations, changes in law and practice, and impact on communities. Findings reveal that that presently Roma lack knowledge of their rights and rarely challenge violations. Accountability in healthcare is practically non-existent. However, where legal advocacy has been used, violations decrease, and power dynamics shift. As healthcare becomes more responsive to communities, it also better serves non-Roma citizens.

Advancing human rights in patient care through higher education in Eastern Europe and Central Asia.

BACKGROUND: In Eastern Europe and Central Asia, for society's most marginalized people, health systems are too often places of violations of basic rights, rather than of treatment and care. At the same time, health practitioners are largely unaware of how to incorporate human rights norms in their work. Additionally, they may face abuses themselves, such as unsafe working conditions and sanctions for providing evidence-based care. Similarly, legal professionals have limited experience working in the health sector, trying to address abuses that occur. CONTEXT: Republics of the former Soviet Union and Yugoslavia have emerged from communism and experienced continued restructuring of their health care systems. As faculties of law, public health, and medicine have sought to incorporate these rapid changes into their curricula, this period of reform and openness to new approaches presented a particular opportunity to integrate human rights education. RESULTS: The Open Society Foundations have attempted to respond to the need to build health and human rights capacity by supporting the development of over 25 courses in human rights in patient care in nine countries. Targeted at different audiences, these courses are now part of the regular offerings at the academic institutions where they are taught. Student evaluations point to the strength of the interdisciplinary approach and the need to integrate practical examples and exercises. Faculty response has led to the development of a virtual community of practice and series of workshops to gain exposure to new ideas, strengthen interactive teaching, and share materials and experiences. REFLECTIONS: Critical to this initiative has been working with faculty champions in each university, who shaped this initiative to meet the needs in their context. It quickly became apparent that teaching methodology is as important as content in human rights education. Meaningful engagement with health practitioners has entailed connections to day-to-day practice, participatory methodology, inclusion of marginalized voices, and linkages to provider rights and challenges.

Human rights in patient care: a theoretical and practical framework.

The concept of "human rights in patient care" refers to the application of human rights principles to the context of patient care. It provides a principled alternative to the growing discourse of "patients' rights" that has evolved in response to widespread and severe human rights violations in health settings. Unlike "patients' rights," which is rooted in a consumer framework, this concept derives from inherent human dignity and neutrally applies universal, legally recognized human rights principles, protecting both patients and providers and admitting of limitations that can be justified by human rights norms. It recognizes the interrelation between patient and provider rights, particularly in contexts where providers face simultaneous obligations to patients and the state ("dual loyalty") and may be pressured to abet human rights violations. The human rights lens provides a means to examine systemic issues and state responsibility. Human rights principles that apply to patient care include both the right to the highest attainable standard of health, which covers both positive and negative guarantees in respect of health, as well as civil and political rights ranging from the patient's right to be free from torture and inhumane treatment to liberty and security of person. They also focus attention on the right of socially excluded groups to be free from discrimination in the delivery of health care. Critical rights relevant to providers include freedom of association and the enjoyment of decent work conditions. Some, but not all, of these human rights correspond to rights that have been articulated in "patients' rights" charters. Complementary to­but distinct from­bioethics, human rights in patient care carry legal force and can be applied through judicial action. They also provide a powerful language to articulate and mobilize around justice concerns, and to engage in advocacy through the media and political negotiation. As "patients' rights" movements and charters grow in popularity, it is important to link patient rights back to human rights standards and processes that are grounded in international law and consensus.

Lessons from Africa: combating the twin epidemics of domestic violence and HIV/AIDS.

Domestic violence and HIV/AIDS have proven a lethal combination, exacting a heavy toll on women's lives, particularly in Africa. In this article, partially based on a presentation made at the human rights networking zone at the conference, Tamar Ezer examines the interrelation between domestic violence and HIV/AIDS, provides an analysis of obligations under human rights law, and describes innovative programs that attempt to address the intersection of these twin epidemics. The author argues for holistic approaches that address the social, economic and legal dimensions of the problem.

Comprehensive care: palliative care and legal services in South Africa.

A fundamental and neglected part of the global response to HIV and AIDS, palliative care is also a critical entry-point for legal services. As Tamar Ezer and Joan Marston write, providing legal services to patients in palliative care can both protect human rights and improve health outcomes.

Swaziland: widows fighting for their rights.

The AIDS epidemic in Swaziland--the world's most severe--has wrought a generation of widows facing deep discrimination and violence. But the enactment of a new constitution, and support for the legal empowerment of women, provide new hope, Tamar Ezer writes.