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How is patient care a human rights issue?

What is patient care?

Patient care refers to the prevention, treatment and management of illness and the preservation of physical and mental well-being through services offered by medical and allied health professions; this, and similar definitions, often are provided for the term "health care" as well. Patient care consists of services rendered by members of the health professions or non-professionals under their supervision for the benefit of the patient. 1 A Patient is a user of health care services, whether healthy or sick.2

What are human rights in patient care?

The concept of "human rights in patient care" brings together the rights of both patients and health care providers. It refers to the application of general human rights principles to all stakeholders in the delivery of health care. It encompasses all rights recognized under international law that are relevant to the provision of health services. This includes basic empowerment rights (such as information, consent, free choice, privacy and confidentiality), rights to a remedy for abuses, and rights of access to services.

Human rights in patient care is complementary to bioethics but provides a set of universally accepted norms and procedures for making conclusions about abuses within health care settings and providing remedies. It uses standards contained in the international human rights framework, which are often mirrored in regional treaties and national constitutions. It differs from patientsí rights, which codify particular rights that are relevant only to patients rather than applying general human rights standards to all stakeholders in health care service delivery, including providers. It draws on concepts such as dual loyalty, which attributes much human rights abuse in health settings to health care providersí simultaneous and often conflicting obligations to their patients and to the State.

What are patient rights?

Patient rights” refers to a “set of rights, responsibilities and duties under which individuals seek and receive health care services.”3

The call for patients’ rights is a movement that is growing globally to make governments and health care providers more accountable for providing access to quality health services.  In 1997, the Council of Europe adopted the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine:  Convention on Human Rights and Biomedicine (European Convention on Human Rights and Biomedicine). This convention sets out certain basic patient rights principles, such as equitable access to health care and protection of consent, private life, and right to information, binding on ratifying states.

The European Charter of Patients’ Rights, compiled in 2002 by Active Citizenship Network, a European network of civic, consumer, and patient organizations, provides a clear, comprehensive statement of patient rights. This statement was part of a grassroots movement across Europe for patients to play a more active role in shaping the delivery of health services and an attempt to translate regional documents on the right to health care into specific provisions.4 Although this Charter is not legally binding, a strong network of patient rights groups across Europe have successfully lobbied their national government for recognition and adoption of rights in the Charter.5 The Charter has also been used as a reference point to monitor and evaluate health care systems across Europe. In September 2007, the European Economic and Social Committee (EESC) approved its own initiative opinion on patients' rights, declaring that it "welcomes and acknowledges" the European Charter of Patients' Rights.

European Charter of Patients’ Rights

Source: Active Citizenship Network, 2002

The 14 ‘immutable’ rights Description
1. Right to preventive measures Every individual has the right to a proper service, in order to prevent illness.
2. Right of access Every individual has the right of access to the health services that his or her health needs require. The health services must guarantee equal access to everyone, without discriminating on the basis of financial resources, place of residence, kind of illness, or time of access to services.
3. Right to information Every individual has the right of access to all kinds of information regarding their state of health, the health services (and how to use them), and all that scientific research and technological innovation makes available.
4.Right to consent Every individual has the right of access to all information that might enable him or her to actively participate in the decisions regarding his or her health. This information is prerequisite for any procedure and treatment, including participation in scientific research.
5. Right to free choice Each individual has the right to freely choose from among different treatment procedures and providers, on the basis of adequate information.
6. Right to privacy and confidentiality Every individual has the right to the confidentiality of personal information, including information regarding his or her state of health and potential diagnostic or therapeutic procedures, as well as the protection of his or her privacy during the performance of diagnostic exams, specialist visits, and medical/surgical treatments in general.
7. Right to respect for patients’ time Each individual has the right to receive necessary treatment within a swift and predetermined period of time. This right applies at each phase of the treatment.
8. Right to observance of quality standards Each individual has the right of access to high-quality health services, on the basis of the specification and observance of precise standards.
9. Right to safety Each individual has the right to be free from harm caused by the poor functioning of health services, medical malpractice and errors, and the right of access to health services and treatments that meet high safety standards.
10. Right to innovation Each individual has the right of access to innovative procedures (including diagnostic procedures), according to international standards and independently of economic or financial considerations.
11. Right to avoid unnecessary suffering and pain Each individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness.
12. Right to personalised treatment Each individual has the right to diagnostic or therapeutic programmes tailored as much as possible to his or her personal needs.
13. Right to complain Each individual has the right to complain whenever he or she has suffered harm, and the right to receive a response or other feedback.
14. Right to compensation Each individual has the right to receive sufficient compensation within a reasonably short time whenever he or she has suffered physical (or moral and psychological) harm caused by a health service treatment

Did you know?

  • Worldwide, information about patient rights is severely lacking.
    • In Macedonia, while 82% of respondents stated that there are patient rights, 56% do not know what their rights are.6
    • In Lithuania,
      • 85%of medical staff (out of 255) and 56% of patients (out of 451) had heard of or read about patients’ rights laws;
      • 50% of professionals and 69% of patients thought information about diagnosis, treatment results, and alternatives necessary for patients.7
  • There are widespread misconceptions about the meaning of forms providing for patient consent to invasive surgery.
    • In a recent survey among 732 European surgical patients,
      • 46% believed that the primary function of the written consent form was to protect the hospital,
      • 68% thought that the form allowed doctors to take control, and
      • 41% believed consent forms made their wishes known. 8
  • Access to essential medicines is lacking in developing countries.
    • The total number of people without access to essential medicines is estimated at between 1.3 and 2.1 billion people.
    • According to a 1999 study, about 30% of the world population lacked access to essential medicines.
    • Only 10% of R&D spending is directed to health problems that account for 90% of the global disease burden.
    • A small number of companies dominate global production, trade, and sale of medicines.  Ten companies account for almost half of all sales.9
  • Worldwide, medicines are often inappropriately taken.
    • Half of all medicines are inappropriately prescribed, dispensed, or sold.
    • Half of all patients fail to take their medicines properly.
    • An estimated 2/3 of global antibiotic sales occur without any prescription.
    • In Pakistan and India, 70% of patients were prescribed antibiotics, and up to 90% of injections are estimated to be unnecessary.
    • In the United States, adverse drug events rank among the top 10 causes of death and cost between $30-130 billion each year.10
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