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 health professionals.1 Patient care consists of services rendered by health professionals (or non-professionals under their supervision) for the benefit of patients.2 A patient is a user of health care services whether he or she is healthy or sick.3
What are the issues and how are they human rights issues?
Patients are entitled to the full range of human rights. Health care providers must respect each patient’s dignity and autonomy, right to participate in making health care decisions, right to informed consent, right to refuse medical treatment, and right to confidentiality and privacy. The attention, treatment, and care that each health care provider gives to a patient must respect the human rights of every one of his or her patients.
The human rights-based approach to patient care draws from standards contained in the international human rights framework, which are often mirrored in regional treaties and national constitutions. It differs from patients’ rights, which codify particular rights that are relevant only to patients. Human rights standards apply to all stakeholders in the delivery of health care—including both patients and care providers.
A human rights-based approach seeks, above all, to uphold the inherent human dignity of all actors in the care provider-patient relationship. This relationship can be a complex one, especially when coupled with health care delivery. For example, as medicine becomes ever more advanced, providers and patients must work together to make diagnostic and therapeutic decisions.4 Financial and quality issues are always present in health care delivery and can lead to inequality and discrimination.5 Greater understanding is needed of the social determinants of health that straddle the lines between traditional medicine and a broader concept of health, as well as of the interdependence of the right to health and the realization of all human rights.6 A human rights-based approach uses the human rights framework to analyze these elements of patient care, among others.
Below are some common human rights issues that arise in patient care settings. This list is not comprehensive. The list alternates between highlighting issue areas and highlighting marginalized groups whose human rights are frequently violated in the health care setting.
Right to information
Patients are often unaware of their rights, including the right to information on their condition and the right to access their medical records. In a study conducted at four hospitals in Lithuania, 85% of the staff and 56% of the patients surveyed had heard of or read about patients’ rights laws.7 Moreover, only 50% of professionals and 69% of patients thought it was necessary for patients to have information about diagnosis, treatment results, and alternative modes of treatment.8 Another study in Macedonia found that 82% of respondents stated that there are patient rights, but 56% did not know what their rights were.9
Patients have the right to information about their health status, treatment options and reasonable alternatives, and the likely benefits and risks of proposed treatment and non-treatment. Patients also have the right to access their medical chart and medical history.
Right to privacy and confidentiality
Patients have the right to have their health information and data kept confidential. According to Gostin et al., “Health data may include not only a patient’s sensitive health status, but also those facts or circumstances that the patient reveals to [health care workers] as part of seeking medical treatment.”10 The “right to privacy and confidentiality must be applied sensitively, with respect for different cultural, social, and religious traditions.”11
For certain vulnerable groups, the right to privacy and confidentiality is an essential aspect of obtaining health care. For example, privacy and confidentiality are crucial to realizing sexual and reproductive rights for women and adolescents.12 In General Comment 14 on the right to health, the Committee on Economic, Social and Cultural Rights states that “[t]he realization of the right to health of adolescents is dependent on the development of youth-friendly health care, which respects confidentiality and privacy and includes appropriate sexual and reproductive health services.”13
Privacy and confidentiality are also crucial for patients seeking diagnosis and treatment of illnesses with which stigma is attached, such as HIV/AIDS and mental illness. Depending on the type of care an individual is seeking, some health care centers may only allow specific providers to access the patient’s health information. For example, a nurse who is vaccinating a patient may not access that individual’s private mental health records because the information is not relevant to the treatment being provided at that current moment.
The right to confidentiality of health information should not interfere with the right to access of private health information. While a holder of private health information should be prohibited from sharing that information with anyone who is not essential to providing health care to the individual, the holder must provide the individual access to their private health information upon the individual’s request. Patients have the right to access their own health information, to be able to control how the information is shared with them (for example, being able to indicate to where mail or phone calls are directed), and to be able to authorize the disclosure of information when desired. The right to confidentiality of private health information, as well as the right to accessibility of private health information, should be upheld and not compromised in respecting the rights of the patient.
Right to informed consent to treatment
The UN Special Rapporteur on the right to health, Anand Grover, defines informed consent as the following:
Informed consent is not mere acceptance of a medical intervention, but a voluntary and sufficiently informed decision, protecting the right of the patient to be involved in medical decision-making, and assigning associated duties and obligations to health-care providers. Its ethical and legal normative justifications stem from its promotion of patient autonomy, self-determination, bodily integrity and well-being.14
The right to informed consent is central to the right to health. Issues that arise concern the competency or legal capacity of the patient to consent, respect for personal autonomy, the sufficiency and completeness of information, and circumstances compelling limits on the need for informed consent.
The complexity of informed consent is mirrored by patients’ lack of understanding of its meaning and importance. For example, in a 2006 study of 732 European surgical patients in obstetrics and gynecology during a six-month period, about 46% believed that the primary function of the written consent form was to protect the hospital, and 68% thought that the form allowed doctors to take control, while only 41% believed consent forms expressed their own wishes for treatment.15
Derogations, or departures, from the right to informed consent are necessary at times, but the question of when derogations may be permitted is a complicated one. When a patient is unconscious, medical providers must seek consent from a legally entitled representative. However, if there is an emergency situation where the patient’s life is in danger, medical providers may presume that consent is given. Issues of informed consent also arise from public health policies that require compulsory testing, compulsory vaccinations, or mandated quarantine during epidemics. Procedural safeguards are crucial to derogations from informed consent, to ensure that proper circumstances are met and to provide a means to challenge the departure from the law. Some groups are particularly vulnerable to violations of the right to informed consent. The UN Special Rapporteur on the right to health brought attention to children, elderly persons, women, ethnic minorities, indigenous peoples, persons with disabilities, persons living with HIV/AIDS, persons deprived of liberty, sex workers, and persons who use drugs.16
The Inter-American Court points out the issues surrounding free and voluntary consent when it comes to women’s sexual and reproductive rights.17 Access to information on sexual and reproductive health is crucial for women to make free and informed decisions. According to the Inter-American system, access to information on sexual and reproductive health “involves a series of rights such as the right to freedom of expression, to personal integrity, to the protection of the family, to privacy, and to be free from violence and discrimination.”18
There is also particular concern and confusion regarding the right to informed consent for persons with disabilities or mental health illness, two groups whose rights are frequently violated. Treatment decisions are often based on inappropriate factors such as ignorance or stigma surrounding disabilities, and indifference or expediency from staff. The Special Rapporteur on the right to health writes, “[These inappropriate considerations are] inherently incompatible with the right to health, [and] the prohibition of discrimination on the ground of disability … In these circumstances, it is especially important that the procedural safeguards protecting the right to informed consent are both watertight and strictly applied.”19 For more detailed information on disability and health, please see Chapter 9.
Persons unable to provide informed consent
Patients may be deemed legally incompetent to make decisions on their own behalf, including providing informed consent to treatment. Patients who are declared legally incompetent can include unconscious patients; minors; patients experiencing confusion or other altered mental states (this includes the elderly); those under the influence of sedatives or other drugs that affect alertness and cognition; and on occasion, persons with disabilities, depending upon their perceived impairment.20
Many countries have a system in which a guardian or representative is authorized to make decisions on behalf of the legally incompetent individual. Depending on the jurisdiction and circumstances, health providers might also have the authority to commit a person involuntarily to a health care facility. Involuntary commitment is generally reserved for severe cases where the person is in immediate danger of harming him/herself or others.
There are frequent issues with guardianship and involuntary commitment because these processes involve denying an individual their autonomy to make decisions. It is crucial that the system be as formal and transparent as possible and to establish procedural safeguards to ensure that the dignity and rights of the individual are upheld. An example of a procedural safeguard for involuntary commitment is to allow courts or tribunals access to challenge the admission.21 For more information, please see Chapter 9 on Disability.
Prisoners who are ill often face violations of their rights as patients. Prisoners have the same rights as other patients, including the right to refuse treatment, the right to informed consent, the right to privacy and confidentiality, and the right to information. For example, they have the right to refuse treatment, including abortions and medical testing.22 Conducting these procedures without informed consent would be coerced or forced and in violation of the prisoner’s right to refuse treatment. Derogations from the right to refuse treatment in prison include the prevention and control of communicable diseases and the treatment of mental illness, but both are subject to specific conditions and should be implemented in line with international standards.23 The prison population includes especially vulnerable groups with special needs, including prisoners with mental health care needs, elderly prisoners, and prisoners with terminal illness.24 These vulnerable sub-populations may require special attention to ensure that their rights to health and life with dignity are realized.
Women are particularly vulnerable to violations of their rights while seeking health care, especially for sexual and reproductive health care services. For example, Human Rights Watch documented abuse of pregnant women during health care visits in South Africa:
[Forms of abuse] include ridiculing or ignoring women’s needs when in pain, especially during labour, unnecessary delays in providing treatment, leaving women to deliver their babies without help, accusing women who appear not to be following nurses’ orders of wanting to harm their babies, verbal insults and degrading treatment, such as asking women to clean up their own blood, or intimidation and threats of harm. Physical abuse involves slapping, pinching, rough treatment and a deliberate refusal to give pain-relieving medication.25
Other issues include independent and autonomous access to sexual and reproductive services, forced sterilization and forced contraception, and physical and sexual abuse by the care giver.26 Violence and assault against women in sexual and reproductive health care settings perpetuates stigma and discrimination against women that denies them human dignity.
The Special Rapporteur to health notes, “Stigma and discrimination against women from marginalized communities, including indigenous women, women with disabilities and women living with HIV/AIDS, have made women from these communities particularly vulnerable to such abuses.”27 The Special Rapporteur on water explains, “Stigma is, by its demeaning and degrading nature, antithetical to the very idea of human dignity. Stigma as a process of devaluation, of making some people “lesser” and others “greater”, is inconsistent with human dignity, which is premised on notions of the inherent equality and worthiness of the human person. It undermines human dignity, thereby laying the groundwork for violations of human rights.”28 Female patients from marginalized populations have the right to seek health care in a manner that is non-discriminatory and respects their dignity.
Access to essential medicines
Access to essential medicines is lacking in many developing countries. An estimated 1.3 to 2.1 billion people worldwide have no access to essential medicines. According to a 2011 study, about one third of the world population lacks regular access to essential medicines.29 Only 10% of pharmaceutical research and development 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.30 However, “Inequity in access to essential medicines is part of inequity in health care.”31 An expert consultation on access to medicines recommended in 2011 that “From the right to health perspective, access to medicines must be equitable. Additionally, more research and development is needed to promote the availability of new drugs for those diseases causing a heavy burden on developing countries.”32
High pricing is another factor that hinders access to medicines. Companies that develop new medicines are often granted a patent, which permits that company to be the sole manufacturer of that medicine for a designated period of time. The expert consultation on access to medicines explains:
While intellectual property rights have the important function of providing incentives for innovation, they can, in some cases, obstruct access by pushing up the price of medicines. The right to health requires a company that holds a patent on a lifesaving medicine to make use of all the arrangements at its disposal to render the medicine accessible to all.33
Access to essential medicines is considered an integral part of the right to health. However, 60 countries do not recognize the right to health in their national constitutions and more than 30 countries have not yet ratified the International Convention on Economic, Social, and Cultural Rights. General Comment 14 says that States must make public health and health care facilities available, including “essential drugs, as defined by the WHO Action Programme on Essential Drugs.”34
1 Dorland’s Illustrated Medical Dictionary, 28th ed., p. 269.
2 This definition, and other similar definitions, are often provided for the term “health care.”
3 World Health Organization (WHO), Declaration on the Promotion of Patients’ Rights in Europe, European Consultation on the Rights of Patients, (1994).
4 Leaning J, “Human rights and medical education,” Boston Medical Journal 315 (1997): 1390. http://dx.doi.org/10.1136/bmj.315.7120.1390.
7 Ducinskiene D et al, “Awareness and practice of patient’s rights law in Lithuania,” BMC International Health and Human Rights 6 (2006):10. www.biomedcentral.com/1472-698X/6/10.
9 Velik-Stefanovska V et al, “Rights of Patients in Macedonia According to European Standards” (2005).
10 Gostin L et al, The Domains of Health Responsiveness –A Human Rights Analysis (World Health Organization Health and Human Rights Working Paper Series No 2, 2003). www.who.int/hhr/information/en/Series_2%20Domains%20of%20health%20responsiveness.pdf.
12 Inter-American Commission on Human Rights (IACHR), Access to Information on Reproductive Health from a Human Rights Perspective (Nov. 11, 2011). www.oas.org/en/iachr/women/docs/pdf/womenaccessinformationreproductivehealth.pdf.
13 UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14, U.N. Doc. E/C.12/2000/4 (Aug. 11, 2000).
14 UN General Assembly, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272 (Aug. 10, 2009).
15 Akkad A et al, “Patients’ perceptions of written consent: questionnaire study,” Boston Medical Jouranl 333(2006):528. www.bmj.com/content/333/7567/528.
16 UN General Assembly, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272 (Aug. 10, 2009).
17 Inter-American Commission on Human Rights, Access to Information on Reproductive Health from a Human Rights Perspective (Nov. 11, 2011).
19 UN Commission on Human Rights, Special Rapportuer on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, E/CN.4/2005/51 (Feb. 11, 2005).
20 World Medical Assembly (WMA), Declaration of Lisbon on the Rights of the Patient, (1981). www.wma.net/en/30publications/10policies/l4/.
21 UN Commission on Human Rights, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, E/CN.4/2005/51 (Feb. 11, 2005).
22 Lines R, “The right to health of prisoners in international human rights law,” International Journal of Prisoner Health, 4, no. 1 (March 2008): 3-53.
24 United Nations Office of Drugs and Crime, Handbook on Prisoners with special needs (2009). www.unodc.org/documents/justice-and-prison-reform/Prisoners-with-special-needs.pdf.
25 Human Rights Watch, Healthcare is Failing Women (Dec. 20, 2011). www.hrw.org/news/2011/12/20/healthcare-failing-women.
26 Inter-American Commission on Human Rights, Access to Information on Reproductive Health from a Human Rights Perspective (Nov. 11, 2011). www.oas.org/en/iachr/women/docs/pdf/womenaccessinformationreproductivehealth.pdf; UN General Assembly, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272 (Aug. 10, 2009).
28 UN Human Rights Council, Special Rapporteur on the human right to safe drinking water and sanitation, A/HRC/21/42 (July 2, 2012).
29 Hogerzeil H and Mirza Z, The World Medicines Situation in 2011: Access to Essential Medicines as Part of the Right to Health (WHO, 2011). http://apps.who.int/medicinedocs/documents/s18772en/s18772en.pdf.
30 World Health Organization (WHO), The World Medicines Situation (2004). http://apps.who.int/medicinedocs/en/d/Js6160e/9.html. The 2011 edition is being released chapter by chapter and will be available at: www.who.int/medicines/areas/policy/world_medicines_situation/en/index.html.
31 Hogerzeil H and Mirza Z, The World Medicines Situation in 2011: Access to Essential Medicines as Part of the Right to Health (WHO, 2011). http://apps.who.int/medicinedocs/documents/s18772en/s18772en.pdf.
32 UN Human Rights Council, Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/HRC/17/43 (Mar. 16, 2011).
34 UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, U.N. Doc. E/C.12/2000/4 (Aug. 11, 2000). www.unhchr.ch/tbs/doc.nsf/(symbol)/E.C.12.2000.4.En.
35 United Nations Educational, Scientific and Cultural Organization (UNESCO), Universal Declaration of Bioethics and Human Rights, 2005. www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/bioethics-and-human-rights/.
36 United Nations Educational, Scientific and Cultural Organization (UNESCO), “International Bioethics Committee,” www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/international-bioethics-committee/.
37 World Medical Assembly, Declaration of Lisbon on the Rights of the Patient [Declaration of Lisbon], 1981. www.wma.net/en/30publications/10policies/l4/.
39 Council of Europe, 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], 1997. http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm.
40 Active Citizenship Network, European Charter of Patients’ Rights [ECPR], 2002. www.eesc.europa.eu/self-and-coregulation/documents/codes/private/085-private-act.pdf.
41 It is important to note that the pharmaceutical company Merck & Co. also provided funding for this movement.
42 One of the activities of new EU member-states during the process of preparation for accession in the EU was adjustment of health care legislation towards European standards. Many countries, such as Bulgaria, adopted a new health law, whose structure and contents are strictly in line with the European Charter of Patients’ Rights.