Health Law & Human Rights July 9th 2009

1. Health Law & Human RightsJuly 9th 2009 Martin Buijsen iBMG/Faculty of law Erasmus University

2. Health Law & Human Rights • Health Law: An Introduction • Autonomy, Human Dignity and The Right to Health Care. • The Meaning of ‘Justice’ in Health Care

3. Health Law: An Introduction • Law and morality: jurisprudence and ethics • Health law: what? • Principles of health law • Health law and health ethics

4. Law and Morality: jurisprudence and ethics • Subject matter jurisprudence • Legal rules • Legal principles

5. Health law: what? • Health law = medical law? • Health law = medical law + patients’ rights? • Health law = ?

6. Health law: what? • Health law = Legal principles and legal rules governing Patients/clients I III Health care II Health care provider financier

7. Health law: what? Health law = I. Health care provision law II. Health care finance law III.Health care insurance law

8. Principles of Health Law • Does health law have principles of its own? • Yes, strong notion • Autonomy? • No, weak notion • Principles of: • Civil law • Penal law • Administrative law

9. Principles of Health Law • Does health law have principles of its own? • Yes, strong notion • Health law = realization of a human right I.e. access to health care

10. Principles of Health Law Respect for privacy Respect for integrity Equal treatment Access to health care -------------------------------------------- Health Human dignity

11. Health Law and Health Ethics • Health law ultimately serves something which is intrinsically good • Health ethics ultimately serves something which is intrinsically good HEALTH!

12. Autonomy, Human Dignity and the Right to Health Care: A Dutch Perspective

13. Basic Concepts • Autonomy (or individual self-determination) • Human dignity • The right to health care

14. Autonomy or Individual Self-determination • Henk Leenen (1929-2002) • “a right of every human being as human being” • “an individual and original right, not derived from the state or society, having its foundation in the principle of the free and autonomous human being whose inherent dignity deserves unconditional respect”

15. Autonomy or Individual Self-determination • “the right of an individual human being to live according to his or her own concept of life” • “to choose your own norms and values, even if they are different from those accepted by society” • “With regard to one’s own life one can dispose of it in ways perhaps not considered acceptable by society”

16. Autonomy or Individual Self-determination • Autonomy is a legal principle, the pillar of health law • Anthropology: two kinds of individualism • Utilitarian individualism • Romantic individualism

17. Autonomy or Individual Self-determination • Utilitarian individualism • Emphasis on Reason, self-interest, individual well-being, Self as sum of individual preferences, liberties, et cetera. • Romantic individualism • Emphasis on emotions, Self formulated in terms of unicity, authenticity, self-realization, autonomy as something hard to come by, individual morality et cetera.

18. Human Dignity • Dutch health lawyers and ethicists tend to identify autonomy with human dignity • In the preambles of human rights treaties autonomy is never mentioned, human dignity always

19. Human Dignity • “Inviolable and inalienable dignity of human beings, inherent to their existence • “Not the product of convention nor a consequence of the recognition by others” • “Respect for human dignity irrespective of factual reciprocity, is due merely because one originates from human beings

20. Human Dignity • “Human dignity” cannot be defined • Its meaning best represented by the entire body of human rights • Violating a human right is violating human digity • Violating a social right is violating human dignity • No (or dimished) access to health care is a violation of human dignity

21. The Right to Health Care • Dutch legal culture: social human rights are second-rate • Individual freedom rights are enforceable, social human rights are not • Social human rights nevertheless impose obligations

22. Again: autonomy and human dignity • Autonomy is essential to dignity • “Autonomy is rooted in the inviolable and inalienable dignity of human beings” • Dignity ≠ autonomy; dignity > autonomy • Council of Europe: autonomy is the right to be protected from unwanted outside influences.

23. Autonomy: the other side of the coin • Identification of autonomy with human dignity leads to neglection of the right to health care • Examples • Much attention for euthanasia and physician assisted suicide,but little for palliative care • Confidentiality as privacy protection • Adhering to opting in (organ donation) when it is not longer reasonable to do so • Introduction of market forces and changing views on equity.

24. The Meaning of ‘Justice’ in Health Care(From a Human Rights Perspective)

25. Introduction • January 1st 2006: introduction of market forces in the Dutch health care system. • Health Care Insurance Act (2006): ‘regulated competition’ • More value for money through competition between • Health care insurance companies • Health care providers • While upholding solidarity • Every resident is legally bound to insure himself against costs of ‘necessary’ health care. • Every insurance company is legally bound to accept residents applying for one of its necessary health care insurance policies. Risk selection is prohibited. Risk related premiums are prohibited. • Coverage is determined by law.

26. Introduction Two incidents: • March 2006: Diaconesse Ziekenhuis (Leiden) • No condemnation, no injustice • November 2008: Kennemer Gasthuis (Haarlem) • Universal condemnation, unjust arrangement • Why? • What is justice (in health care)?

27. Justice: what? • (Distributive) justice as virtue and principle • “Suum cuique tribuere”: to each his own • History of thought: • To each according to merit • To each according to need • Justice and equal treatment (or equality) • Health care as sphere of justice • So, what is the meaning of ‘justice’ or ‘equal treatment’ or ‘equality’ in health care?

28. Equal Treatment and the Right to Health Care • Health care is a human right • Article 12 of the International Covenant on Economic, Social and Cultural Rights: “Right to the highest attainable standard of health”. This right includes access to health care.” • A human right in which equal treatment (or non-discrimination) is a matter of major importance. General Comment no 14: • “With respect to the right to health, equality of access to health care and health services has to be emphasized.” • “States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons.” • “Obligations to protect include, inter alia, the duties of States to adopt legislation or to take other measures ensuring equal access to health care and health-related services provided by third parties.”

29. Equal Treatment and The Right to Health Care • A human right in which a specific meaning is given to ‘equality’ (or ‘equal treatment’ or ‘non-discrimination or ‘justice’ or ‘equity’) • Article 3 of the Biomedicine Convention: “Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality.” Explanatory report: “The aim is to ensure equitable access to health care in accordance with the person's medical needs. (…) Access to health care must be equitable. In this context, "equitable" means first and foremost the absence of unjustified discrimination.”

30. Equal Treatment and The Right to Health Care • A human right in which a specific meaning is given to ‘equality’ (or ‘equal treatment’ or ‘non-discrimination or ‘justice’ or ‘equity’) • Article 3 of the Additional protocol (organ transplants) “Parties shall guarantee that a system exists to provide equitable access to transplantation services for patients. Organs and, where appropriate, tissues shall be allocated only among patients on an official waiting list, in conformity with transparent, objective and duly justified rules according to medical criteria.” In November 2008 the Dutch government rejected proposals to stimulate organ donation by means of incentives. So called bonus points were considered unjust and in violation of art. 3 of the Additional protocol and art. 3 of the Biomedicine Convention.

31. Health Care and Justice • From a human rights perspective, health care is a separate sphere of justice • In health care: to each according to objective need • Therefore, differences in treatment can only be justified by differences in objective need. The employment of non-medical criteria is unjust and amounts to discrimination. • Is there a significant difference between the two incidents from a normative point of view? • Legally, no! Both are ‘wrong’, since in both cases preferential treatment is based on non-medical criteria.States party to treaties such as ICESCR and the Biomedicine Convention have a twofold obligation. They have to realize the social right (of access to health care) progressively. There is simply no going back! And at the same time, they have to do so for everybody, that is: with strict adherence to the need-principle. The Dutch government failed in this respect. • And morally?

32. Health Care and Justice • What makes a difference in the new system? • The ability to make the right choices • Having access to information • on the quality of the purchased health care • on the quality of the services provided by the insurance company • on future health needs • on costs, on future income • Being in the (social) position to obtain that information • Having the ability to process that information • Having the means to opt for restitution policies (in stead of ‘in natura’ policies) • In other words: merit!

33. The Meaning of ‘Justice’ in Health Care To conclude: • From a human rights perspective, health care is a sphere of justice in which health care is delivered solely on the basis of objective need. • With market forces come the ‘mores’ of the market • “To each according to need” gradually becomes “To each according to merit” Or rather: “To each according to what he makes for himself.” I.e. the true principle of justice in the new system. Not Rawls, but Nozick.