Practitioner Guides

 
Human Rights in Patient Care: a Practitioner Guide“ is a joint project of the Open Society Foundations’ Law and Health Initiative (LAHI), Human Rights and Governance Grants Program (HRGGP), Russia Project, and the National Foundations in Armenia, Georgia, Kazakhstan, Kyrgyzstan, Macedonia, Moldova, and Ukraine.

The mission of the Practitioner Guide project is to advance enforcement of legislation to promote human rights in patient care by translating laws and procedures into practical terms for legal practitioners, health care providers, and patients.

Background

Legal, ethical, and human rights norms are an increasingly important component of the delivery of quality medical care. The Open Society Foundations’ work on behalf of society’s most marginalized persons — injection drug users, people living with HIV, sex workers, Roma and other ethnic minorities — has shown that health systems can too often be places of punishment, coercion, and violations of basic rights to consent and confidentiality, rather than places of treatment and care. At the same time, doctors and health practitioners are often constrained in their ability to provide quality care to their patients, or are unaware of how to incorporate ethical and human rights norms into their work. There is an urgent need to support legal and administrative remedies for individual and systemic human rights abuse in health settings, and at the same time to establish non-punitive mechanisms of incorporating normative principles into patient care.

The Practitioner Guides Project

To this end, LAHI, in partnership with seven national foundations and the Russia Project, is supporting the development of a series of Practitioner Guides and companion country websites for lawyers interested in taking patient rights cases. These are practical, how-to manuals, covering both litigation and alternative mechanisms such as ombudspersons and medical licensing bodies. They examine patient and provider rights and responsibilities and procedural mechanisms at national, regional, and international levels. Guides are currently being produced in Armenia, Georgia, Kazakhstan, Kyrgyzstan, Macedonia, Moldova, Russia and Ukraine.

Dissemination

These Practitioner Guides will be used as a basis for training and litigation support. They show particular potential as a resource in clinical legal education programs. Although legal practitioners are the primary audience for the guides, they will also be useful for medical professionals, public health managers, Ministries of Health and Justice, patient advocacy groups, and patients themselves.


TEMPLATE FOR PRACTITIONER GUIDES

I. Introduction: Goal of the Project and Potential Uses for the Guide and Website

Chapter 1: Introduction

This guide is part of a series published in cooperation with the Law and Health Initiative of the Open Society Foundations (OSF) Public Health Program, OSF’s Human Rights and Governance Grants Program, OSF’s Russia Project, and the Soros Foundations of Armenia, Georgia, Kazakhstan, Kyrgyzstan, Macedonia, Moldova and Ukraine. Designed as a practical, “how to” manual for lawyers, it aims to provide an understanding of how to use legal tools to protect basic rights in the delivery of health services. The guide systematically reviews the diverse constitutional provisions, statutes, regulations, by-laws, and orders applicable to patients and health care providers and categorizes them by right or responsibility. It additionally highlights examples and actual cases argued by lawyers.

 The aim of the guide is to strengthen awareness of existing legal tools that can be used to remedy abuses in patient care. If adequately implemented, current laws have the potential to address pervasive violations of rights to informed consent, confidentiality, privacy, and non-discrimination. As this effect can be accomplished through both formal and informal mechanisms, this guide covers litigation and alternative forums for resolving claims, such as enlisting ombudspersons and ethics review committees. It is hoped that lawyers and other professionals will find this book a useful reference in a post-Soviet legal landscape, which is often rapidly in flux.

 This guide addresses the concept of “human rights in patient care,” which brings together the rights of both patients and health care providers. The concept of human rights in patient care refers to the application of general human rights principles to all stakeholders in the delivery of health care. These general human rights principles can be found in international and regional treaties, such as the International Covenant on Civil and Political Rights; the International Covenant on Economic, Social and Cultural Rights; and the European Convention on the Protection of Human Rights and Fundamental Freedoms; and the European Social Charter. These rights are universal and can be applied in the context of health care delivery just as they can be in any other context.

Overview of the Guide

Chapters 2 and 3 of the guide respectively cover the international and regional laws governing human rights in patient care. They examine relevant “hard” and “soft” laws and provide examples of cases and interpretations of treaty provisions. These two chapters are identically organized around the established human rights applicable to both patients and providers. These are the rights to liberty and security of the person; privacy; information; bodily integrity; life; highest attainable standard of health; freedom from torture, cruel, inhuman, and degrading treatment; participation in public policy; non-discrimination and equality for patients; decent work conditions; freedom of association; and due process for providers. Chapter 4 provides information on the international and regional procedures for protecting these rights.

 Chapters 5, 6, 7, and 8 are country-specific. Chapter 5 clarifies the legal status of international and regional treaties ratified, signed, or adopted by a given country; explains the country’s use of precedent; and includes a brief description of the legal and health and systems. Chapter 6 deals with patient rights and responsibilities. The patient 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. Drawn up in 2002 by the Active Citizenship Network - a European network of civic consumer, and patient organizations - the European Charter of Patients’ Rights is not legally binding, but it is generally regarded as the clearest and most comprehensive statement of patient rights. The Charter attempts to translate regional documents on health and human rights into 14 concrete provisions for patients: rights to preventive measures, access, information, informed consent, free choice, privacy and confidentiality, respect of patients’ time, observance of quality standards, safety, innovation, avoidance of unnecessary suffering and pain, personalized treatment, the filing of complaints, and compensation. These rights have been used as a reference point to monitor and evaluate health care systems across Europe and as a model for national laws. Chapter 6 uses the rights enumerated in the European Charter of Patients’ Rights as an organizing principle, but along with each right, the applicable binding provisions under the national laws are presented and analyzed. These rights are then cross-referenced with the more general formulation of rights in the international and regional chapters. Chapter 7 focuses on provider rights and responsibilities, including the right to work in decent conditions, the right to freedom of association, the right to due process, and other relevant country-specific rights.

 Chapter 8 covers the national mechanisms for enforcement of both patient and provider rights and responsibilities. These mechanisms include administrative, civil, and criminal procedures and alternative mechanisms, such as the Office of the Public Prosecutor, ombudspersons, ministries of internal affairs, ethics review committees, and inspectorates of health facilities. The chapter additionally contains an annex of sample forms and documents for lawyers to file.

 The final section is a glossary of terms that are relevant to the field of human rights in patient care. Some versions of the guides also include a section of the glossary with country-specific terminology. The glossary will enable greater accessibility of law, health, and human rights material.

Uses of the Guide

The guide has been designed as a resource for both litigation and training. It may be particularly useful in clinical legal education programs. Although designed for lawyers, the guide may additionally be of interest to medical professionals, public health managers, Ministries of Health and Justice personnel, patient advocacy groups, and patients who desire a firmer understanding of the legal basis for patient and provider rights and responsibilities and the available mechanisms for enforcement.

Companion Websites

The field of human rights in patient care is constantly changing and evolving, necessitating the need for regular updates to the guide. Electronic versions of the guides will be periodically updated at: http://www.health-rights.org. This international homepage links to country websites, which also include additional resources gathered by the country working groups that prepared each guide. These resources include relevant laws and regulations, case law, tools and sample forms, and practical tips for lawyers. The websites also provide a way to connect lawyers, health providers, and patients concerned about human rights in health care. Each of the websites provides a mechanism for providing feedback on the guides.

Note from the Authors

The material in this guide represents the views of an interdisciplinary working group composed of legal and medical experts. The guide does not carry judicial or legislative authority, and it does not substitute for legal advice from a qualified lawyer. Rather, it represents the authors’ attempt to capture the current state of the law and legal practice in the field of human rights in patient care in [each given country]. The authors welcome any comments concerning errors or omissions, or suggested additions to the guide, and questions about how the law might apply to a particular factual scenario.

 As this guide illustrates, the field of human rights in patient care is still new and evolving. Many of the statutory provisions cited in the guide have not been authoritatively interpreted by courts, and those that have still remain open to additional application and interpretation. There remain huge gaps in understanding how, in practice, to apply human rights in patient care. This guide is, therefore, a starting point for legal inquiry, not a final answer. It is hoped that this guide will attract new professionals to the field of human rights in patient care, and that future editions will be much richer in their elaboration of legal protections.


 

II. International Framework for Human Rights in Patient Care

Introduction
Key Sources
Patient Rights:

A. Right to Liberty and Security of the Person
B. Right to Privacy
C. Right to Information
D. Right to Bodily Integrity
E. Right to Life
F. Right to the Highest Attainable Standard of Health
G. Freedom from Torture and Cruel, Inhuman and Degrading Treatment
H. Right to Participate in Public Policy
I. Right to Non-Discrimination and Equality

Provider Rights:
J. Right to Work in Decent Conditions
K. Right to Freedom of Association
L. Right to Due Process and Related Rights

III. European Framework for Human Rights in Patient Care

Patient Rights:
Key Sources
Patient Rights:

A. Right to Liberty and Security of the Person
B. Right to Privacy
C. Right to Information
D. Right to Bodily Integrity
E. Right to Life
F. Right to the Highest Attainable Standard of Health
G. Freedom from Torture and Cruel, Inhuman and Degrading Treatment
H. Right to Participate in Public Policy
I. Right to Non-Discrimination and Equality

Provider Rights:
J. Right to Work in Decent Conditions
K. Right to Freedom of Association
L. Right to Due Process and Related Rights

IV. International and Regional Procedures

A. Introduction
B. The International System
C. The European System
D. Complaint Procedure: European Convention on Human Rights

V. Country-Specific Notes

A. Status of International and Regional Law
B. Status of Precedent
C. Legal and Health Systems

VI. National Patients’ Rights and Responsibilities

A. Patients’ Rights
1. Right to Preventive Measures
2. Right of Access
3. Right to Information
4. Right to Consent
5. Right to Free Choice
6. Right to Privacy and Confidentiality
7. Right to Respect for Patient Time
8. Rights to Observance of Quality Standards
9. Right to Safety
10. Right to Innovation
11. Right to Avoid Unnecessary Suffering and Pain
12. Right to Personalized Treatment
13. Right to Complain
14. Right to Compensation
15+: Additional Rights in Specific Country


 

Structure for each right and responsibility

Name of Specific Right
1. Right as Stated in European Charter of Patients Rights (for rights 1-14)
2. Right as Stated in Country Constitution//Legislation
3. Supporting Regulations/Bylaws/Orders
4. Provider Codes of Ethics
5. Other Relevant Sources
6. Practical Examples: Compliance, Violation and Actual Cases
7. Practice Notes for Lawyers
8. Cross-Referencing Relevant International and Regional Rights
Name of Specific Responsibility
1. Note of Explanation for How Responsibility Relates to Patient Care
2. Responsibility as Stated in Country Constitution//Legislation
3. Supporting Regulations/Bylaws/Orders
4. Provider Codes of Ethics
5. Practical Examples: Compliance, Violations and Actual Cases
6. Practice Notes for Lawyers

VII. National Provider Rights and Responsibilities

Providers’ Rights
1. Right to Work in Adequate Conditions
2. Right to Freedom of Association
3. Right to Due Process
4+: Additional Rights in Specific Country
Providers’ Responsibilities (to be identified by each country)

 Structure for each right and responsibility

Name of Specific Right
1. Note of Explanation for How Right Relates to Health Providers
2. Right as Stated in Country Constitution//Legislation, Including Licensing and Certification Statutes
3. Supporting Regulations/Bylaws/Orders
4. Provider Codes of Ethics
5. Other Relevant Sources
6. Practical Examples: Compliance, Violation and Actual Cases
7. Practice Notes for Lawyers
8. Cross-referencing Relevant International and Regional Rights
Name of Specific Responsibility
1. Note of Explanation for How Responsibility Relates to Health Providers
2. Responsibility as Stated in Country Constitution//Legislation, Including Licensing and Certification Statutes
3. Supporting Regulations/Bylaws/Orders
4. Provider Codes of Ethics
5. Other Relevant Sources
6. Practical Examples: Compliance, Violation, and Actual Cases
7. Practice Notes for Lawyers

VIII. National Procedures

A. Mechanisms to Protect/Enforce Rights and Responsibilities in Court
1. Administrative Procedure
2. Civil Procedure
3. Criminal Procedure
B. Alternative Mechanisms to Protect/Enforce Rights and Responsibilities
1. Office of Public Prosecutor
2. Office of Ombudsperson
3. Ministries of Internal Affairs
4. Ethics Review Committee
5. Inspectorate of Health Facilities
6. Other
C. Annex of Documents and Forms
GLOSSARY OF TERMS
A. International
B. Country-Specific

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