If the right to self-determination establishes the right to refuse medical treatment, symmetry would seem to require that patients have a right to demand treatment as well. This would mean that individuals have a right to healthcare. At current writing, this situation is not the case in the United States.⁽¹⁾ Nor is it the case in other countries where there is a right to healthcare that patients have the right to every possible form of healthcare. For even in those countries where there is universal access to healthcare guaranteed by the tax dollars collected, there is a rationing at the point of utilization.⁽²⁾ It would seem that in those countries where universal access is available, rationing is the price individuals have to pay in that society.⁽³⁾

    A return to the examination of the concept of rights will reveal the reason for the asymmetry in the right to self-determination. It will be recalled from the previous section that a right entails a duty imposed upon someone or some organization to act in certain ways or refrain from acting in certain ways so that the values identified by the right can be realized. Without a duty on another there is no right, only a wish or desire that certain things might happen.⁽⁴⁾

    A duty, then, is a burden that someone has to bear in order for others to achieve a certain good which they, or society in general, have deemed worthy of protection. If duties are viewed as burdens, then the asymmetry between the right to refuse treatment and the "right" to demand treatment begins to make sense. In exercising the right to refuse treatment the patient is only placing upon another the duty to refrain from acting. Thus, the burden on the person or institution possessing the duty is a light, or indirect, one requiring no positive actions on the bearer of the duty to promote the welfare of the one refusing treatment. The bearer of the duty does not have to engage in any direct action or bear any special economic burden. At most the individual may have to watch a patient pursue an approach to a healthcare condition with which she does not agree. It may be the case that such a duty might place a strain on the integrity of the caregiver. But such is the burden which caregivers assume (in light of their pledge of beneficence) as a part of the responsibilities of their profession; setting aside their own preferences in order to promote the good of those whom they have dedicated themselves to serving. In this case the major burden falls on the individual refusing treatment. This individual is the one who may be placing herself in harm's way by her decision and she must bear the consequences.

    On the other hand, a right to demand treatment would impose upon another a serious burden in the form of a duty. The individual or institution bearing the duty would be required to engage in positive actions or bear financial burdens which might be considered too heavy to bear. In addition the bearer of the duty might have to transgress some important professional obligations if she is engaging in some actions which might very well harm the patient demanding the treatment.⁽⁵⁾ For example, a patient who asks for healthcare in the form of aid-in-dying may be imposing an unwarranted burden on the physician if the physician understands that her professional obligations prohibit such assistance.

    If the patient suffers harm in refusing treatment, the harm is the patient's, under considerations of autonomy. In the case of treatment refusals, autonomy overrides a desire on the part of caregivers to be beneficent in the form of imposing treatment. If the patient enjoys a benefit from refusing treatment, then the benefit is the result of both the autonomy of the patient and the beneficence of the caregiver who has honored the patient's autonomy. If a patient suffers harm in demanding inappropriate treatment, the requirement to produce the harm in the form of treatment imposes a heavy duty on the bearer of the duty, i.e., the caregiver who may be honoring the patient's wishes but who also violates the principle of non-maleficence, the first step of beneficence.⁽⁶⁾ If a patient should benefit from an inappropriate treatment which is demanded, then the caregiver may have honored the patient's autonomy but only accidentally fulfilled the requirements of beneficence.

    In addition, there is often limited financial liability if a patient refuses treatment. However, if a patient can demand treatment and cannot pay for the treatment, someone else must bear the burden of the cost; members of the taxpaying community or members of the insurance pool or both. In exceptional cases, patients could refuse a certain form of healthcare which, if utilized, could improve the patient's situation, but without which the patient could continue with on-going healthcare problems. There could be significant costs in such cases, but one would hope that such cases would be rare. Perhaps these sorts of cases indicate that there are hidden costs to the exercise of autonomy.

    In summary, then, refusals of treatment ordinarily impose only light, or indirect, burdens on another by way of duties. Demands for treatment could impose heavy burdens on another by way of duties. As a society we have a tacit commitment to keep burdens at a minimum when possible. This may be one of the reasons why American society, up to this time, has recognized the right to refuse treatment while not granting the right to demand treatment.

    While there is no universal right to healthcare in the United States there are some limited legal rights to it. Medicare and Medicaid are two forms of these entitlements and for those who qualify for the programs it can be said that they have a right to some healthcare. Dialysis is a right for every citizen since it is funded by Medicare but is extended to all citizens and it is not restricted only to those over 65. Even with Medicare and Medicaid programs, however, there is a form of rationing. For example, transplant surgery is available to members of the programs only on a very limited basis.

    We can now see emerging the texture which demands for treatment or a right to healthcare takes. In a free market economy one gets what one can pay for either in direct payment or indirect payment through an insurance contract.⁽⁷⁾ Any care is available if one can pay the price. In this case the right to healthcare follows from the ability to pay. In healthcare programs, on the other hand, the right to healthcare extends only as far as the providers' willingness to pay for procedures.⁽⁸⁾ If the provider is unwilling to pay, then the only way the individual can get the procedures is to pay for it out of pocket or have it provided as an act of charity.

    Limits on healthcare provided by taxpayer-supported or insurance programs are ordinarily determined by examining what the programs are willing to provide. Some procedures are considered too costly for the program. Or some procedures may be too costly for the benefits they provide. Sometimes these procedures are called "not costworthy."⁽⁹⁾ Sometimes procedures are considered experimental and not clinical.⁽¹⁰⁾ All programs, therefore, stipulate the limits of treatment which it will make available to their subscribers. No program can provide everything. Thus, demands for treatment can never be universally satisfied unless one pays for the treatment out of pocket.

    Because of this disparity between refusals of and demands for treatment, conversations about the Patient Self-Determination Act must be very clear about the parameters of self-determination. While patients must be clear that they have the right to refuse treatment they must be equally clear that requests or demands for treatments must be considered as their conditions warrant and as treatment options present themselves in their fiscal situations.⁽¹¹⁾ Any specific limitations on treatments must be discussed with the patient's caregivers. However, at the time of admission, a summary of the healthcare institution's general policies on limiting treatments must be made available to patients or potential patients.⁽¹²⁾ This will be a delicate matter to communicate at the time of admission but it is essential so that patients will be able to decide if they want to continue the admission procedure.⁽¹³⁾ It would certainly be unfair to disclose to the patient the information about the institution's policies after the patient is admitted or is made a member of a health maintenance organization.

    In examining the matter of a "right" to demand treatment or a "right" to healthcare, we have looked at the issue from the standpoint of legal rights. Strong positions have been taken in the healthcare reform debate that, while we may not have an entitlement to healthcare presently, we still have a moral right to healthcare.⁽¹⁴⁾ The difference between the two forms of rights can be briefly outlined in the following manner.⁽¹⁵⁾ Legal rights are those which are codified and which specify the individual, group, or institution upon which the duty to act or refrain falls. This identification sets the stage for a judicial process which can be invoked if there is a failure to perform the duty. To put it another way, a legal right guarantees the right to sue. Moral rights, on the other hand, are not codified. They appeal only to the enlightened conscience. Although they may identify the individual, group, or institution upon which the duty should fall, they cannot do so with the force of judicial intervention if the "duty" were to be transgressed.⁽¹⁶⁾ For this reason, moral rights take on the complexion of wishes or desires held by individuals without the power of legal sanctions.⁽¹⁷⁾

    In spite of their limitations, moral rights are not totally anemic. They can be a strong force in society for social change. Legal rights do not emerge from a vacuum. These rights are developed and codified as the result of prior beliefs and desires in society. These prior beliefs and desires often take the form of expressions of moral rights. As the moral rights which are articulated become more convincing and more pressing they may be translated into legal rights. This is precisely what is happening in the healthcare debate. While the moral right to healthcare has be articulated for a number of years, it has only now reached a point where there is wide-spread agreement that this moral right embodies values which are worthy of being encased in legal rights.⁽¹⁸⁾ Thus, while the moral right to demand treatment is rapidly reaching the status of a legal right, nevertheless, even the legal right to demand treatment will have some limitations because of the nature of the conditions of patients, the therapeutic possibilities which they afford, and the limitations on the economic resources which can be made available for healthcare.

    The Patient Self-Determination Act may be another case of a moral right being translated into a legal right. Since the problem of patients' knowing about the right to refuse treatment emerged in the last generation and new strategies for patients were opened by advance directive legislation in the states, there was a demand that somehow patients ought to know about their rights in these areas. The moral pressure became so great that the law was enacted.

2. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Securing access to health care. Washington, D.C.: US Government Printing Office, 1983, pages 115-119.

3. Rodwin MA. Medicine, money, and morals: physicians' conflicts of interest. New York: Oxford University Press, 1993, pages 158-160.

4. Macklin R. Moral concerns and appeals to rights and duties. Hast Cent Rep 1976;6:31-38.

5. Pellegrino Ed. The place of intention in the moral assessment of assisted suicide and active euthanasia. In Beauchamp TL. Intending death: the ethics of assisted suicide and euthanasia. Upper Saddle River, NJ: Prentice Hall, 1996, pages 163-183.

6. Pellegrino ED, Thomasma DC. For the patient's good: the restoration of beneficence in health care. New York: Oxford University Press, 1988, pages 26-27.

7. Engelhardt HT. The foundations of bioethics. 2nd edition. New York: Oxford University Press, 1996, pages 387-390.

8. Managed care contracts have underscored this feature which has always been a part of healthcare insurance contracts. The provider decides what level of healthcare will be provided. The insured, by agreeing to the contract, also agrees to the reimbursement limitations for healthcare costs. The rights of the insured (patient) and the duties of the provider are limited to the terms of the contract. (Cf. Zibelman AM. The practice standard of care and liability of managed care plans. J Health Hosp Law 1994;27:204-217.)

9. The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Bloomington, IN: Indiana University Press, 1987, pages 120-126.

10. In vitro fertilization was not covered (and, in some situations, is still not covered) in its early implementation because insurers considered it to be experimental rather than clinical in spite of the fact that its success rates in fertility centers was well established.

11. Some of the conditions for unwarranted demands for treatment will be considered in the next section which examines the issue of futile treatments. The parameters of decisional authority in cases of demands for futile treatments will be explored in that discussion.

12. An example of such a statement is provided to patients by Grandview Hospital and Medical Center, Dayton, OH with regard to its "Medical Staff Guidelines on Determining Futile and Inadvisable Treatments" (1998).

13. This becomes a particularly important issue when seniors are seeking admission to extended care facilities. If they have particular beliefs about the extent of healthcare they wish to receive, they should be sure at the time of admission that the policies of the extended care facility complement their wishes.

14. Buchanan AE. The right to a decent minimum of health care. In Beauchamp TL, Walters L. Contemporary issues in bioethics. 4th edition. Belmont CA: Wadsworth Publishing Co., 1994, pages 695-700.

15. Feinberg J. Social philosophy. Englewood Cliffs, NJ: Prentice-Hall, Inc., 1973, pages 55-68 and 84-88.

16. While moral rights may be compelling and may ultimately be codified in the law, they do not confer upon the bearer the power to sue which is present only with legal rights.

17. Macklin R. Moral concerns and appeals to rights and duties. Hast Cent Rep 1976;6:31-38.

18. McCullough LB. The right to health care. Ethics in Science and Medicine 1979;6:1-9.