Advancing Human Rights in Patient Care: A Legal Analysis in Seven Transitional Countries, Lecture notes of Human Rights

Download Advancing Human Rights in Patient Care: A Legal Analysis in Seven Transitional Countries and more Lecture notes Human Rights in PDF only on Docsity!

ADVANCING HUMAN RIGHTS

IN PATIENT CARE:

The Law

in Seven

Transitional

Countries

Leo Beletsky

Tamar Ezer

Judith Overall

Iain Byrne

Jonathan Cohen

ADVANCING HUMAN RIGHTS

IN PATIENT CARE:

The Law

in Seven

Transitional

Countries

applicable to patients and providers at the national, regional, and international levels, highlighting illustrative cases and providing an overview of the procedural mechanisms. These rights are then cross-referenced with established human rights norms in the international and European systems. Within this analytical structure, this Compendium summarizes and synthesizes the outcomes of this innovative initiative in seven of the eight countries (Moldo- va is not included, as it is being drafted at the time of this writing). After defining and situating the concept of human rights in patient care, describing the general setting for health care in the region, and detailing the background and method- ology of the project, we compare and contrast the legal mechanisms, cultural and professional contexts, and procedural particularities for vindicating patient and provider rights in these particular transitional settings. The findings suggest that significant formal legal reform over the last two decades has created signifi- cant gains in the legal frameworks and institutions designed to address human rights abuses in patient care. The findings also suggest, however, that a number of challenges in six of the countries included here are intrinsic to a common heritage that includes ves- tiges of Soviet legal concepts, institutions, and attitudes that complicate the full implementation of human rights legislation. The actual expression of this legal, cultural, and institutional heritage varies significantly across the participat- ing countries, providing an opportunity to build on successes in a horizontal exchange, through knowledge transfer and regional advocacy. In all countries of the practitioner guide project, structural issues related to the turbulent transition of the health care and legal systems, such as degree and quality of oversight and financing, further complicate a human rights agenda in the health care sphere. In view of these structural limitations, utilizing administra- tive and alternative dispute resolution channels is often a strategy superior to Western-style legal advocacy. The human rights framework provides a critical lens for addressing a spectrum of problems in the health care sphere, including discrimination, breach of confidentiality, compulsory treatment, and labor rights. Vulnerable groups stand to gain the most from efforts to bolster equity, quality, access, and other human rights in patient care. Within the context of a larger project, the information from this Compendium offers a number of promising di- rections for future programming and research efforts aimed at advancing human rights in patient care. A discussion of how these findings inform future research, programmatic, and funding activities conclude this Compendium. 3

4 List of Abbreviations CAT Convention Against Torture and Other Forms of Cruel, Inhuman, or Degrading Treatment or Punishment CAT–OP Optional Protocol to the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment CEDAW Convention on the Elimination of All Forms of Discrimination Against Women CERD Convention on the Elimination of All Forms of Racial Discrimination CHRB Convention on Human Rights and Biomedicine CIOMS Council for International Organizations of Medical Sciences CMW International Convention on the Protection of the Rights of All Migrants Workers and Members of their Families CRC Convention on the Rights of the Child CRPD Convention on the Rights of Persons with Disabilities ECHR European Convention on Human Rights ECtHR European Court of Human Rights ECPR European Charter of Patients’ Rights ESC European Social Charter ICCPR International Covenant on Civil and Political Rights ICCPR–OP Optional Protocol to the International Covenant on Civil and Political Rights ICESCR International Covenant on Economic, Social and Cultural Rights MoLHSA Ministry of Labor, Health and Social Affairs NGO Non governmental Organization UN United Nations UNESCO United Nations Educational, Scientific and Cultural Organization WHO World Health Organization WMA World Medical Association

6 About the Authors LEO BELETSKY is an assistant professor at the School of Law & Bouvé Col- lege of Health Sciences, Northeastern University and an Adjunct Professor at the Division of Global Public Health, University of California in San Diego School of Medicine. His research focuses on the role of law as a social determi- nant of health and a health and human rights promotion tool. He received his undergraduate training in geography from Vassar College and Oxford Univer- sity, a master’s in public health from Brown University, and his law degree from Temple University School of Law. Beletsky is a native of Russia, whose maternal grandparents—a pediatrician and a urologist—narrowly escaped Stalin’s “killers in white coats” purge of the early 1950’s. TAMAR EZER is the Senior Program Officer in the Law and Health Initiative at the Open Society Public Health Program, where she works on a variety of health and human rights issues in eastern and southern Africa and the former Soviet Union. She was previously a teaching fellow at the Georgetown University Law Center’s International Women’s Human Rights Clinic. While at the Clinic, she supervised test cases challenging discriminatory laws and oversaw fact-finding and legislative projects in Nigeria, Swaziland, Tanzania, Uganda, and the Philippines. Tamar has also taught international women’s rights at Tulane Law School’s summer program and has written various articles on the rights of women and children. She has also served as a law clerk for the Southern District of New York and the Supreme Court of Israel. Tamar is a graduate of Stanford University and Harvard Law School, where she was editor-in-chief of the Harvard Human Rights Journal. JUDITH OVERALL is a consultant to the Law and Health Initiative of the Open Society Public Health Program on the following projects: the Practitioner Guides; law, health and human rights courses in legal, medical and public health faculties; the Community of Practice for faculty members of the courses; and the interna- tional mentoring of the LAHI Fellows. As a former state special assistant attorney general, she prosecuted cases of abuse of vulnerable adults in licensed care facilities and cases of health provider payment system fraud in the United States. She has owned, managed, and consulted for health facilities and was a licensed nursing facility administrator. She is a former department chair and director of international programs in the Department of Health Systems Management at Tu- lane University’s School of Public Health and Tropical Medicine, where she taught health law, public health law, health policy, principles of public health administra- tion and management, and contemporary issues in long term care management to students from around the globe, many of whom are mid-career medical, nurs- ing and public health professionals. She retains an adjunct appointment at Tulane. As a consultant, she has planned, directed and consulted for curricula design of

7 academic programs in health management, public health and health law, and has lectured on health law, public health law, public health/health management, and elder care issues in over 30 countries in Latin America, Africa, Central Asia, Central, Eastern and Southeastern Europe, China and Taiwan. She is co-author of Public Health Capacity Building for the Future of Europe, Lessons Learned from the Project: Quality Development of Public Health Teaching Programs in CEE 2000-2005 Open Society Foundations ASPHER project, for which she served as meta-evaluator. She holds degrees in law, health management, special education and educational psychology. IAIN BYRNE is Chairman of the International Justice Resource Center Board of Directors, and policy adviser on economic, social and cultural rights with Amnesty International. Previously, he was acting Legal Practice Director and Senior Lawyer with lead responsibility for leading litigation work on economic and social rights at INTERIGHTS, the international center for the legal protection of human rights, based in London. Since 2000 he has been a Fellow of the Human Rights Centre, University of Essex from which he graduated with MA (distinction) in 1994 after obtaining a LLB (Hons) degree from the University of Manchester. From 2001 until 2008 he led INTERIGHTS’ work in the Commonwealth, including editorship of the Commonwealth Human Rights Law Digest. He has been involved in litigation in many domestic fora across the Commonwealth and beyond and submitted cases to the European Committee of Social Rights, the European Court of Human Rights, and the UN Human Rights Committee. He has lectured widely in the UK and abroad and conducted training courses for, amongst others, the United Nations, Amnesty International and the British Council in Europe, Latin America, Africa, South Asia and the Pacific. In April 2007 he was Visiting Professor at the Human Rights Centre, UN University of Peace, Costa Rica. He has authored numerous articles, papers and books on human rights and democracy issues including Unequal Britain: an Economic and Social Rights Audit of the UK with Stuart Weir et al. JONATHAN COHEN is the Deputy Director of the Open Society Public Health Program. Mr. Cohen formerly directed the Open Society Public Health Program’s Law and Health Initiative and was previously a researcher with the HIV/ AIDS and Human Rights Program at Human Rights Watch, where he conducted investigations of human rights violations linked to HIV epidemics in sub-Saharan Africa, Southeast Asia, and North America. His articles and commentaries on international human rights subjects have appeared in scholarly journals, edited volumes, and international newspapers. Cohen sits on the Advisory Committee of the Health and Human Rights Division of Human Rights Watch and the Joint United Nations Programme on HIV/AIDS (UNAIDS) Reference Group on HIV/AIDS and Human Rights. A Canadian lawyer, he served as a law clerk for Justice Michel Bastarache at the Supreme Court of Canada in 2001 and was co-editor-in-chief of the University of Toronto Faculty of Law Review. He holds degrees from Yale Col- lege, the University of Cambridge, and the University of Toronto Faculty of Law.

9 Background Legal, ethical, and human rights norms are an increasingly important but still- often-neglected component of the delivery of quality medical care. This is so even though respect for human rights in patient care is increasingly under- stood as an issue that has implications for public health, as well as for broader functional economic and societal development. Across the world, especially in totalitarian and post-totalitarian settings, health systems have too often served at times as venues of punishment, coercion, and violations of basic human rights. In countries transitioning from totalitarian regimes, for example, health care practitioners and institutions are often constrained in their ability to provide quality care, sometimes unaware of ethical and human rights abuse that may be occurring, and sometimes lacking in incentives to reform individual, organiza- tional, or system-wide norms and practices. In regard to patients, there is a growing, global body of empirical evidence doc- umenting patterns of systemic maltreatment of members of marginalized com- munities, including migrants or other displaced people; ethnic minorities such as the Roma; sexual minorities; women; people living with HIV/AIDS, tuberculosis, viral hepatitis and other infectious diseases; people needing palliative care; peo- ple who use drugs; people with disabilities; and the poor. Many of these groups are especially vulnerable to abuse because they often lack access to both formal and informal resources and structures to vindicate their individual rights and to address violations on the systems level. Across the Eastern and Central Europe- an region and Central Asia, the geographic region of the Practitioner Guides, for example, a culture of disrespect, abuse, and/or poor oversight in many health care institutions over time created a fertile environment for endemic and severe human rights abuse of patients, particularly those in marginalized communities.^3 Patients, however, are not the only group that suffers human rights abuses in health care settings globally: medical professionals may be persecuted for pro- viding evidence-based health care to marginalized groups, ordered to destroy medical records or disclose confidential health information to the state, or co- erced into participating in (or covering up) torture and crimes against humanity.^4 Even in open societies, health providers may be denied safe working conditions, punished for alleged ethical breaches without proper due process, or forced to provide care that violates their professional or personal ethical principles.^5 Recognizing that universal human rights norms have special relevance to health 3 See, e.g. International Dual Loyalty Working Group, Dual Loyalty & Human Rights in Health Professional Practice: Proposed Guidelines & Institutional Mechanisms. 1993. 4 Ibid. 5 Ibid. at 12; see also F. Hashemian, et al. Broken Laws, Broken Lives: Medical Evidence of Torture by US Personnel and Its Impact. Boston, Physicians for Human Rights. 2008.

10 care providers as well as patients is essential to nurturing a culture of respect for these norms within the health care delivery context. Beyond their impact on individuals, systemic violations of human rights in patient care also weaken societies. Left unchecked and uninvestigated, medi- cal errors become significant sources of morbidity and mortality. Discrimination against and under-treatment of patients with stigmatized diseases push epidem- ics underground and fuel their spread. Fear of disclosure of confidential health information to employers, family members, and law enforcement authorities cre- ates deadly barriers to health care institutions and emergency services. Corrup- tion sentences the least resourced patients to receiving inadequate care, further marginalizing them. Lack of transparency hampers public health surveillance and response to emerging threats. Lack of access to quality preventative services increases susceptibility to population-level health problems and increases overall medical expenditures. These and other human rights abuses perpetuate cycles of ill-health, poverty, negligence, corruption, and dysfunctional governance. There is an urgent need to support and strengthen legal, administrative, and other remedies for individual and systemic human rights abuses, and to do so in a way that promotes access to quality health care services. By helping identify and support effective mechanisms, advocates and funders can help ensure safe, effective, and respectful patient care.

12 along with the particular country guide, include additional resources gathered by the country working groups that prepared each guide. These include other related laws and regulations not included in the guides, case law, tools and sample forms, and practical tips for lawyers. The websites also provide innova- tive communication tools to connect lawyers, health providers, and patients concerned about human rights in patient care. Each of the websites provides a mechanism for feedback on the guides. The second phase of this project has included trainings for lawyers, judges, and health care providers based on the guides; production of patient-friendly materi- als (written in everyday language rather than legal terminology) with a focus on marginalized populations; and gaps analyses comparing domestic legislation with international and regional human rights standards. A legal fellow in human rights in patient care in each country coordinates updates to the Guides, train- ings, and development of patient-friendly versions in collaboration with their host NGOs, practitioner guide authors, and representatives of marginalized pa- tient groups. Fellows are recent law graduates based at local nongovernmental organizations with expertise and interest in expanding work in law, human rights, and patient care.^7 A parallel activity is the development and teaching of sixteen courses to date in law and health and human rights in the same eight countries in law, medical, and public health faculties, in which the practitioner guides are included as teaching materials.^8

The Aims and Structure of this Compendium

This compendium synthesizes seven^9 country-specific practitioner guides drafted as of July 2012 into a single, macro-level analysis. Aimed at policymakers, advo- cates, academics, and other observers, it is intended to provide a bird’s-eye view of the overall legal, case law, and procedural state of human rights in patient care in these seven particular transitional settings. It is designed to facilitate cooperation and to provide a baseline for comparative analyses in the future by highlighting similarities, identifying common issues, and contrasting specific examples. The structure of the compendium parallels that of the individual country-specific practitioner guides. Section 2 (P. 19) describes the international and regional law governing human rights in patient care, with examination of the relevant body of law and provision of illustrative examples of cases and interpretations of treaty provisions. This section is organized around established human rights ap- 7 As of June 18, 2010, fellows in Armenia, Georgia, Macedonia, and Ukraine initiated work on this project; fellows in Kazakhstan, Kyrgyzstan, and Russia began in 2011. For additional information on the Fellows, please see www.health-rights.org/fellowships. 8 For additional information on these courses, please see http://cop.health-rights.org/teaching. 9 Moldova is not included in this compendium.

13 plicable to both patients and providers. For patients, these are rights to liberty and security of the person; privacy; information; bodily integrity; life; the highest attainable standard of health; freedom from torture, cruel, inhuman, and degrad- ing treatment; participation in public policy; and non-discrimination and equality. Provider topics include the right to work in decent conditions and freedom of association, as well as due process-related rights. Sections 3, 4, 5, and 6 focus on the national legal frameworks and mechanisms of seven of the countries of the Practitioner Guide project.

• Section 3 (P. 34) clarifies the legal status of international and regional treaties ratified, signed or adopted across the seven countries; analyzes the governance, legal, and health care systems across the countries; and addresses the countries’ use of legal precedent.
• Section 4 (P. 45) synthesizes patients’ rights and responsibilities. The pa- tients’ rights section is organized according to the rights in the European Charter of Patients’ Rights with the addition of any country-specific rights not specifically covered by the charter. The charter attempts to translate regional documents on health and human rights into 14 concrete provi- sions for patients: rights to preventive measures, access, information, consent, free choice, privacy and confidentiality, respect of patients’ time, observance of quality standards, safety, innovation, avoidance of unneces- sary suffering and pain, personalized treatment, the filing of complaints, and compensation. Each of these rights is then cross-referenced with es- tablished international and regional human rights norms listed above. The patients’ responsibilities section contains those responsibilities identified in the national legislation by each country working group.
• Section 5 (P. 67) focuses on provider rights and responsibilities, using the same structure as Section 4, including specifically the rights to work in de- cent conditions, freedom of association, and due process, plus any other relevant national-level rights, as well as responsibilities of health providers that the working groups identified.
• Section 6 (P. 80) covers the national procedures and mechanisms for enforcement of both patient and provider rights and responsibilities. This encompasses administrative, civil, and criminal procedures and alternative mechanisms, including examples such as the office of the public prosecu- tor, ombudspersons, ministries of health and internal affairs, ethics review committees, and inspectorates of health facilities. It additionally describes what the participant countries chose to include in the annex of sample forms and documents of their country guides. As this compendium illustrates, the field of human rights in patient care is still new and evolving in this region, as it is globally. Courts have not authoritatively interpreted many of the statutory provisions cited in the practitioner guides, and those that have been remain open to additional application and interpretation.

15 TABLE 1. CROSS-REFERENCING THE EUROPEAN CHARTER OF PATIENTS’ RIGHTS WITH HUMAN RIGHTS OF GENERAL APPLICATION Right to Preventive Measures Right to Health Right of Access Right to Non-discrimination & Equality Right to Information Right to Information Right to Consent Right to Bodily Integrity: Right to Liberty & Security of Person; Right to Freedom from Torture & Cruel, Inhu- man, Degrading Treatment; Right to Privacy; Right to Health Right to Free Choice Right to Bodily Integrity: Right to Liberty & Security of Person; Right to Freedom from Torture & Cruel, Inhu- man, Degrading Treatment; Right to Privacy; Right to Health Right to Privacy & Confidentiality Right to Privacy Right to Respect for Patients’ Time Right to Health Right to Observance of Quality Right to Health; Right to Life Standards Right to Safety Right to Health; Right to Life Right to Innovation Right to Health; Right to the Benefits of Scientific Progress Right to Avoid Unnecessary Right to Health; Freedom from Pain & Suffering Torture & Cruel, Inhuman, Degrading Treatment Right to Personalized Treatment Right to Health; Right to Non-discrimination & Equality Right to Complain, Right to Right to a Remedy Compensation European Charter of Patients’ Rights Human Rights of General Application

16 Situating “Human Rights in Patient Care” in the Philosophical Landscape Unlike the concept of “patients’ rights,” which articulates particular rights specific to patients, the concept of “human rights in patient care” refers to the applica- tion of general or universal human rights principles to all stakeholders in the delivery of health care services. In this latter paradigm, patient and provider rights are interdependent. Just as patients face risk of violations of rights to informed consent, confidentiality, privacy, non-discrimination, and even egregious abuses that rise to the level of torture and cruel, inhuman and degrading treatment, health care providers likewise may face abuses such as unsafe working conditions, sanctions for providing evidence-based health care, and denial of due process when patients make complaints against them. These abuses impede the delivery of quality health care services and contribute to a human rights environment that undermines the provider-patient relationship. Socially marginalized groups such as migrants or other displaced people; ethnic minorities such as the Roma; sexual mi- norities; people living with HIV/AIDS, tuberculosis, viral hepatitis and other infec- tious diseases; people needing palliative care; people who use drugs; and people with disabilities are especially vulnerable to this dynamic. Thus, the concept “hu- man rights in patient care” acknowledges the rights of both patients and providers as important and interrelated, while still retaining a focus on patient care. Discussions of human rights in medical and scientific settings conventionally rely on a number of well-established philosophical and legal frameworks. These include bioethics, patients’ rights, right to health, and patient safety, among others. Therefore, it is important to situate the novel term “human rights in patient care,” which serves as the main focus of the practitioner guides, among traditional key conceptual frameworks. Bioethical pillars of beneficence, autonomy, and justice, with added consider- ation of non-malfeasance and human dignity by some commentators, counter many of the types of patient abuses and human rights violations that may oc- cur in health care settings.^14 While the field of bioethics has traditionally been concerned exclusively with protecting patients and research participants, the international human rights framework takes a wider scope to encompass other key stakeholders, including health care providers.^15 Further, this more expansive 14 International Dual Loyalty Working Group, supra note 1. 15 Cohen J, Kass N, and Beyrer C. “Human Rights and Public Health Ethics: Responding to the Global HIV/AIDS Pandemic.” In: Beyrer C and Pizer HF, eds. Public Health and Human Rights: Evidence-based Approaches. Baltimore, MD: Johns Hopkins University Press, 2007:362-390.

18 By recognizing that the health care environment is prone to foster relevant abuses and by providing specific case examples, Comment 14 highlights the troubled history and complex reality that surrounds patient care in many regions across the globe, including that of the practitioner guide participant countries. In the last fifty years, patients’ rights have been codified in key regional instru- ments. In the European context, the European Charter of Patients’ Rights^19 and the World Health Organization’s Declaration on the Promotion of Patients’ Rights in Europe^20 provide additional obligations and guidance for participating states; these documents are discussed in the next section. Furthermore, the European Convention on Human Rights and Biomedicine establishes an additional re- gional mechanism to the patient rights framework.^21 These instruments are representative of a patients’ rights approach, which differs in at least two respects from the application of general human rights principles in the context of patient care. The first distinction is that the human rights frame- work applies not only to patients but to all stakeholders in health care delivery, including providers. A second difference is that some patients’ rights charters advance rights that are relatively new in the cannon of international law. Human rights in patient care also closely relate to issues arising from dual loyalty, or “simultaneous obligation to a patient and a third party,”^22 including insurers and governments. This phenomenon includes such issues as resource rationing, mandatory reporting, and compulsory medical or mental health treatment. In cases where the interests of the patient and the third party are aligned, there is arguably much lower risk of human rights violations. Their misalignment, however, often facilitates abuses that can affect the provider as well as the patient.^23 Dual loyalty is an important concept not only because it sheds light on the causes and manifestations of human rights violations in patient care, but also because it provides a framework for spotting and resolving such conflicts in health care settings. 19 ECPR, see supra note 10. 20 World Health Organization Declaration on the Promotion of Patients’ Rights in Europe. www.who.int/genomics/public/eu_declaration1994.pdf. Accessed July 31, 2012. 21 Council of Europe (COE). Convention for the Protection of Human Rights and Dignity of the Hu- man Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine. April 4, 1997. http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm. Ac- cessed on July 31, 2012. (hereinafter European Convention on Human Rights and Biomedicine). 22 International Dual Loyalty Working Group, supra note 1 at 11. 23 Ibid. at 12.

19 International and European Legal Framework The human rights architecture at the international, regional, and national levels provides an important formal and procedural framework for addressing abuses of human rights in patient care. This legal framework creates a number of specific mechanisms that can be utilized to hold abusive governments and state actors accountable. This section provides an overview of the key instruments designed to safeguard patients’ and providers’ rights internationally, as well as specifically within the ‘European Region’ (defined here as the member states of the European Region of WHO). Within the United Nations regime, a number of the major binding treaties and covenants contain applicable provisions.^24 These include various EU instru- ments, such as the European Convention on Human Rights (“ECHR”) and the European Social Charter (“ESC”). Below is a condensed overview of the relevant documents and their application to patient care, as well as illustrative examples of their application to the various issues of interest. 25 (A summary of participating countries’ ratification of these instruments appears in Table 2.) The international and European human rights regime utilizes individual monitor- ing bodies, courts and other special procedures to enforce its provisions. These bodies include such treaty bodies as the United Nations Human Rights Com- mittee, courts like the International Court of Justice and the European Court of Human Rights (ECtHR), and a number of special procedures, e.g. the Special Rapporteurs mandated by the Human Rights Council. Extending beyond treaties that fall within the scope of the UN regime, this section addresses several docu- ments and frameworks developed by international and European organizations and civil society groups that aim to interpret international and European human rights law for the purposes of national legislation and enforcement. 24 See Appendix : Thirteen Health and Human Rights Documents in Health and Human Rights: A Resource Guide , published by Open Society Institute and Equitas and edited by J. Cohen, T. Ezer, P. McAdams, and M. Miloff. An HTML version of this resource guide is available at: http://equal- partners.info/. 25 See generally Health Rights: Human Rights in Patient Care Home Page , www.health-rights.org, for a more detailed discussion of international legal frameworks of human rights in patient care, including an exhaustive enumeration of the international treaty and other instruments.