“No one gives us rights. We win them in struggle. They exist in our hearts before they exist on paper. Yet intellectual struggle is one of the most important areas of the battle for rights. It is through concepts that we link our dreams to the acts of daily life.”
Albie Sachs (1990)
This idea of rights as being fundamental will be referred to throughout this module, as the concept of human rights is essential to an understanding of modern health systems.
Right ethicists consider human rights as morally paramount and fundamental i.e, conduct/behaviour is morally right or obligatory when or because it respects human right, which are considered the bottom line. From this has followed several movements, viz women’s/gay rights, farm workers movement, etc., and in health care in South Africa is expressed for example in the National Patients Right Charter. Human rights also form part of the SA Constitution and in the American Declaration of Independence it states that all men are created equal with inalienable rights such as life, liberty, the pursuit of happiness, etc. These rights are said to be self-evident and intuitively obvious.
Human rights exist by virtue of a person’s humanity and are valid claims on society for social and material resources, respect and tolerance. They therefore represent a fundamental need. They limit the power of the State over individuals as the State must protect, promote and fulfil human rights.
Competent adults have the ability and moral authority to exercise these rights but not children or incapacitated adults. Yet these rights can be violated, waived (e.g. forced isolation of patients with XDR-TB), exchanged or passed to others to exercise on another’s behalf (e.g. power of attorney). They also overlap with legal rights, i.e those that are embedded in legal documents. However, they can also be violated by law such as when slavery or apartheid were legalised.
Basic human rights extend to a long list and some examples are life (and obviously all that support it), liberty, property, pursuit of happiness, etc. In America the pursuit of happiness later became the right to pursue legitimate interest, i.e. equated to liberty. Such rights have further been classified into liberty rights, considered negative rights (not to be killed, have property stolen) and welfare rights, considered positive rights (to receive essential goods) such as the right of disabled or sick persons to receive care, the fired worker to receive unemployment benefits, senior citizens to receive social security, etc. On the other hand, libertarians only recognise liberty rights and, although a small minority, they have had great political influence, whereas most rights ethicist recognise both liberty and welfare rights e.g. the right to therapy of disabled persons. Deception is said to violate the liberty to legitimate pursuits, but other rights may compete or take precedence over liberty. Special moral rights emanate from contracts, promises, membership, relationships with others, etc., and thus don’t apply to all persons.
Good moral judgement entails identifying all the rights relevant to a specific situation and then finding the most reasonable way to balance and/or priorities those rights in order to resolve the dilemma that has arisen.
Restriction and limitation of human rights
Human rights may be restricted:
- To secure the recognition and respect for the rights and freedoms of others
- To meet the just requirements of morality, public order and the general welfare
- In times of emergency, when there are threats to the vital interests of the nation
The Syracuse principles describe the conditions under which basic human rights may be restricted or waived:
- The restriction is provided for and carried out in terms of the law
- There must be a legitimate objective in terms of restricting the person’s rights
- It must be strictly necessary to achieve the objective
- There must be no less restrictive means of achieving the objective
- It is not arbitrary, unreasonable or discriminatory
The following human rights may never be restricted:
- Freedom from torture, slavery, servitude
- The right to a fair trial
- Freedom of thought
Every patient has the right to:
- A healthy and safe environment
- Participate in decision-making around their care
- Access health care
- Knowledge of ones health insurance/medical aid scheme
- Choice of health services
- Be treated by a named health care provider
- Confidentiality and privacy
- Informed consent
- Refuse treatment
- Be referred for a second opinion
- Continuity of care
- Complain about health services
The South African Medical Research Council (SAMRC) has suggested that the forced isolation of patients presenting with MDR- and XDR-TB may promote human rights violations according to the South African constitution and international human rights law.
The dilemma is that current legislation permits the detention of patients with infectious diseases until the disease no longer poses a threat. In the case of patients with a potentially incurable untreatable disease i.e. XDR-TB, detention could conceivably be until death. From this perspective, forced isolation without procedural safeguards, may be unconstitutional.
The SAMRC illustrates the following points that must be considered:
- Quarantine must be preceded by lawful procedure
- Enforced treatment of XDR-TB patients, even under quarantine conditions, represents a most severe invasion of an individual’s right to freedom and security of the person
- The threat of an uncontrollable XDR-TB epidemic fuelled by HIV, should urge policy makers, public health authorities, researchers and funders to spend the necessary time, energy and financial resources addressing the problem as a national priority in SA
- They highlight the fact that patients suspected of being infected with TB must have universal access to rapid diagnosis, appropriate treatment, and adequate support systems to ensure treatment completion. However, this approach must also encompass patient rights and responsibilities.
The dilemma: public health vs. individual rights
The SAMRC suggests that the control of XDR-TB must be the most important priority of the Department of Health. However, their approach in protecting public health must be balanced by “…operating within the context of the Bill of Rights enshrined in the Constitution, thereby promoting, respecting and protecting individual rights”. They then go on to highlight the human rights that would be limited, or violated by implementing enforced detention and treatment of patients with TB:
- Freedom and security of the person;
- Human dignity;
- Privacy and confidentiality;
- Freedom of movement and residence;
- Freedom of trade, occupation and profession;
- Just administrative action (the right to be heard before action is taken);
- Equality ( discriminating between those who will be detained and those who will not);
- An environment that is not harmful to health or well-being (particularly health care workers and other patients).
It appears, that the forced detention of patients infected with (or suspected of being infected with) XDR-TB may be unconstitutional in that it appears to violate several human rights of the patients. In contrast, the protection of the public must also be taken into account when considering legislation in this regard. At this stage, it seems prudent to conclude with this remark from the SAMRC:
“The challenge to all South Africans therefore is to develop an ethically justifiable framework for management of XDR-TB based on sound legal principles.”
Singh, J.A., Upshur, R. & Padayatchi, N. (2007). XDR-TB in South Africa: no time for denial or complacency.