Running head: HEALTH OF THE PUBLIC

Individual Rights and the Health of the Public Hollis Misiewicz The Catholic University of America Washington, D.C.

HEALTH OF THE PUBLIC Individual Rights and the Health of the Public In the United States, the 20th century experienced a dramatic decline in the incidence of tuberculosis as living conditions improved and medicine advanced effective treatments for this

disease. In the 1980s, however, an upswing in the incidence of tuberculosis was noted, mostly in areas of poverty and overcrowded living conditions. A major concern accompanying this increase in cases was the concurrent development of drug-resistant strains of tuberculosis. This trend can be traced to uncompleted treatment, which results in the mutation of mycobacterium tuberculosis to drug-resistant strains (Bayer, Neveloff Dubler, & Landesman, 1993). Uncompleted treatment of tuberculosis, which has resulted in latent tuberculosis infections, has often been cited as a result of ineffective social and public health policies (Bayer et al., 1993). Social factors, such as homelessness, alcohol and drug addiction, and psychiatric disorders influence a patients ability to adhere to treatment protocols. Unfortunately, it is this population that is heavily affected by the spread of tuberculosis as they are often impoverished and live where there may be crowding and unsanitary conditions (Bayer et al., 1993). The case presented in this paper involves a homeless man, M.W., who is infected with multi-drug resistant tuberculosis. Initially he came to the clinic when he was scheduled to receive his drug therapy. He began to miss these appointments and the nurse practitioner, along with the social worker, arranged for supervised drug administration. Even with this method of administering his treatment, he frequently was unable to be found and therefore did not receive his medication. The medical director of the clinic is concerned that the patients health will deteriorate further and that he will spread tuberculosis to others. He wonders if he should obtain a court order for mandatory treatment even if it is against the will of the patient. This paper will discuss the ethical dilemma involved in determining whether patients should be treated against

HEALTH OF THE PUBLIC their will for the good of the public and present appropriate action under these circumstances, based on good moral actions. Issues

The major issue of the case presented in this paper is whether it is ethical to treat a patient against their will. In the case of this patient who has been diagnosed with tuberculosis, not completing treatment could adversely affect both the patient and the public. When a patient does not adhere to the medication regimen on their own, partial treatment will result in latent disease, of which the patient will eventually die. In addition to this, the strain of mycobacterium will mutate to become drug resistant (Harper, 2010). M.W. does have multi-drug resistant tuberculosis, but this can further mutate to become extensive drug-resistant tuberculosis. An increase in extensive drug-resistant tuberculosis has implications for the development of a lethal global pandemic (Coker, Thomas, Lock, & Martin, 2007). Historically, involuntary detention has been used to attempt to prevent the spread of tuberculosis when patients have refused treatment, voluntary measures have failed, and the patient is considered a threat to the public. Isolation and quarantine of infected individuals was the only option to contain the spread of disease prior to the advent of effective drug therapy (Coker et al., 2007). This quarantine for disease has always been associated with discrimination and stigmatization of the infected person. Poverty-stricken, socially disadvantaged groups bear the greatest burden of these infectious diseases. For these marginalized groups, enforced isolation could result in further discrimination and negatively affect the behavior of those needing treatment for a disease such as tuberculosis (Coker et al, 2007). Public authority is required to enforce quarantine and isolation and this creates conflicts between the protection of the individuals autonomy and dignity and the protection of the health

HEALTH OF THE PUBLIC of the public. Public health officials have the power to restrict patients liberties and compel them to be treated when it is felt they present a public health threat. Courts do require the government to prove that no less restrictive alternatives exist that will protect the public health

and also the liberties of the patient (Fidler, Gostin, & Markel, 2007). In Western culture, human rights jurisprudence emphasizes the importance of individual autonomy and the protection of individual rights (Coker et al, 2007). Many stakeholders are involved in a case such as M.W. where a person with a deadly infectious disease refuses to adhere to treatment. Tuberculosis is spread by something as simple as breathing, so it a huge concern to the public. In this case, the community where the patient resides would be affected first. If M.W. does not follow his treatment to completion, he could develop an extreme drug-resistant tuberculosis that might be impossible to eradicate. If he remains in the community, he will spread it to others around him, and those people will spread it further. In this day of global travel, it is possible for a disease such as this to be carried to another country. The stakeholders here would be everyone in the world. The patient, himself, is also a stakeholder. His liberties are endangered by the possibility of enforced quarantine, not unlike prison. The nurse practitioner, social worker, director of the clinic and all other personnel who work at the clinic also have a stake in this situation. They are committed to provide the best of care for the patient and protect the interests of the public at the same time. Researchers are also stakeholders as they seek to find an effective treatment for a strain of tuberculosis that is extreme drug-resistant. The director would benefit from more information about the patient himself. Often homeless people are afflicted with psychological disorders. A psychiatric evaluation might help to determine the most effective way to involve the patient in his own treatment or guide the

HEALTH OF THE PUBLIC provision of appropriate intervention during quarantine. Other possible problems, such as drug or alcohol addiction could be addressed if it was found the patient was a substance abuser.

Nursing plays a dual role in a case such as the one presented in this paper. The American Nurses Association (ANA) Code of Ethics states that the nurse promotes, advocates for, and strives to protect the health, safety and rights of the patient (ANA, 2001, p. 16). In this case, the nurse practitioner must keep the health of her patient in mind in addition to his protecting his right of autonomy. Does he harm himself by not adhering to his drug regimen? Without treatment his disease will progress and he will succumb to it. The nurse must evaluate his ability to make rational decisions. She will need to decide what course of action benefits the patient most and then act on that. On the other hand, the ANA Code of Ethics states that the nurse collaborates with other health professionals and the public in promoting community, national, and international efforts to meet health needs (ANA, 2001, p. 28). The nurse must also consider the danger to the public if her patient does not adhere to treatment. Does the benefit to the public outweigh the risk of denying the patient his right to autonomy? Analysis Utilitarianism The philosophy of utilitarianism supports the practice of public health. This philosophy, as proposed by John Stuart Mill, states that the outcome of action produces either happiness or misery. The goal of ones action should be to maximize overall happiness for a society and minimize the overall pain or suffering (Grace, 2009. p. 15). Under the circumstances presented in this case where a patient has an infectious disease and resists treatment, coercive isolation would be supported by utilitarianism. Although enforced quarantine would interfere with the

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patients autonomy, this action would be justified since the rights of the individual do not prevail over what is in the best interest of the public (Coker et al., 2007; Grace, 2009). Autonomy Self-determination has been defined as the right of individuals to decide what will or will not happen to their bodies (Guido, 2010, p. 173). Patients must be informed that refusing treatment could likely mean a deterioration in their condition or possible death. It has been argued that patients know what is best for them and that making their own decisions can enhance their psychological well-being (Beauchamp, 1990). For a patient to exercise autonomy he or she must have the mental ability and maturity to be capable of competent decision making. If patients are unable to understand the implications of their actions then they are unable to make a rational decision regarding their care. Respecting the autonomy of a patient does not mean that healthcare providers need to let them make their own mistakes (Grace, 2009). Determinism Determinism is a philosophy that proposes that all events have a cause. People may not be responsible for their behavior because behavior is caused by decisions, decisions by desires, and desires by character. Character is molded by our environment and genetics and, therefore, beyond our control. Patients have internal and external constraints that can affect their ability to adhere to prescribed treatment. In light of this, the healthcare provider must base their care on the strategy that will avoid the worst outcome. If the patient is unable to be held responsible for their action it is considered in their best interest to administer the treatment rather than withhold it and risk adverse consequences to the patient (Browne, Dickson, & Van Der Wal, 2002). Non-maleficence

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Non-maleficence is the moral obligation to do no harm (Westrick, 2009). Nurses ethical responsibility is to protect patients from harm and this includes that which may befall them as a consequence of their own actions. A patient who is unable to make competent decisions might choose to miss appointments with their healthcare provider or not take prescribed medications. It is the nurses responsibility to educate and guide the patient to allow them to make an informed decision. The nurse must also take into consideration the good of society. Patients with communicable diseases who are not receiving treatment and are out in the community have the potential to cause harm to the public (Resnik, 2005). Beneficence Beneficence is the moral obligation to do good and prevent harm (Westrick, 2009). The nurse provides care that benefits the patient. In this case, the nurse practitioner was concerned because the patient was not keeping appointments to receive his tuberculosis treatments. The nurse was troubled that, without the medication, the disease would progress and the patient grow sicker. She then arranges for supervised drug administration to ensure the patient is properly treated. These actions are for the good of the patient in an effort to cure his tuberculosis. Cultural and Religious Considerations Western cultures political philosophy is based on the sanctity of the individual and protection of individual rights. To enforce quarantine against a patients will would be considered a serious breach of that patients right of autonomy and self-determination. Cultures in Asia, Africa or Islamic cultures do not agree with the priority of the individuals rights. The good of the community or society as a whole is given precedence over the individual. In this case, enforced quarantine, in order to protect the community from spread of disease, would be considered the intervention of choice (Coker et al., 2007).

HEALTH OF THE PUBLIC Results In the case of M.W., the director of the clinic is faced with a difficult decision. He has a patient with multi-drug resistant tuberculosis who has started treatment but then become nonadherent with his medication regimen. From a public health point of view, this is the worst

scenario since uncompleted treatment poses a more serious threat than no treatment. The risk of the development of further drug resistance is greater under these circumstances. The patient originally came to the clinic for treatment and when he stopped showing up for appointments, the nurse practitioner and social worker arranged for supervised drug administration. A public health nurse would meet the patient wherever he was living and give him his medication. This did not work either as the patient was not where he was expected to be and could not be found. The patient was given two options for voluntary treatment. The director wants to know if approaching the courts to enforce quarantine of this patient is the ethical action to take. Although enforced isolation is a drastic measure, it does not mean that this is inappropriate. People with tuberculosis do pose a definite threat to the public. In this case, the director of the clinic should go to the courts to enforce quarantine of the patient even though it might be against M.W.s will. The Siracusa Principles provide guidance in determining whether coercive public health interventions are necessary. The first principle is the consideration of whether the restriction of an individuals liberty is of true concern. Controlling the spread of tuberculosis and minimizing the development of drug resistance is definitely legitimate and in the interest of public health. A second principle addresses whether less restrictive alternatives have been tried. In this case the patient was offered two different options to receive his medication voluntarily. The third principle looks at whether the involuntary isolation is imposed on people in a non-discriminating

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manner (Coker et al., 2007). In this case, that is unknown, since only one patient is addressed in the scenario. John Stuart Mills proposed theory of utilitarianism, in particular the harm principle, provides a moral foundation for the government to interfere with the rights of the individual in order to protect the public (Resnik, 2005). If M.W. is not quarantined he is likely to infect persons around him with a drug-resistant strain of tuberculosis. The due process of law is necessary before the involuntary isolation of any individual in order to determine that convincing evidence exists to support the quarantine as necessary to protect the public. The government has the burden of proof that the patient is indeed infectious and a threat to the public and can mandate that the quarantine environment is safe and healthful (Fidler et al., 2007). An effective plan for M.W. will include a secure place to live with treatments that are appropriate and social services to address his problems (Bayer et al., 1993). Imposing quarantine on M.W. in a safe environment where he will receive his medication for tuberculosis until the completion of treatment is supported by both principles of nonmaleficence and beneficence. If M.W. completes his entire prescribed drug regimen he will have a good chance to be cured of his disease. The restoration of health is for the benefit of the patient. By confining him until he has been cured, the public will not be harmed by the spread of tuberculosis. Determinism also supports this position since if he is truly not responsible for his decisions, then treating him against his will, will cause the least harm and, possibly, cure his disease. Enforced quarantine is ethically justifiable provided it is necessary to protect the public, is utilized as a last resort, and is applied in such a way that human dignity is maintained (Bayer et al., 1993; Coker et al., 2007; Fidler et al., 2007; Negus, 2004; Resnik, 2005). Conclusion

HEALTH OF THE PUBLIC The case scenario presented in this paper involves a homeless patient with tuberculosis who has not been adherent with treatment. It is known that partially completed tuberculosis treatment will not cure the disease and the patient will eventually die while at the same time,

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drug-resistant strains of the disease will develop. This poses a great threat to the health of others, both in the community and globally. In a situation such as this it is necessary for the health care provider to consider the good of the public over the individual rights of the patient. Each case must be considered individually, with the use of a framework to guide decisions and ensure legitimacy of the decision when enforcing quarantine against a patients will.

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References American Nurses Association. (2001). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Nursebooks,org.

Bayer, R., Dubler, N. N., & Landesman, S. (1993). The dual epidemics of tuberculosis and AIDS: Ethical and policy issues in screening and treatment. American Journal of Public Health, 83(5), 649-654.

Beauchamp, T. L. (1990). The promise of the beneficence model for medical ethics. The Journal of Contemporary Health Law and Policy, 6, 145-155.

Browne, A., Dickson, B., & van der Wal, R. (2003). The ethical management of the noncompliant patient. Cambridge Quarterly of Healthcare Ethics : CQ : The International Journal of Healthcare Ethics Committees, 12(3), 289-299.

Coker, R., Thomas, M., Lock, K., & Martin, R. (2007). Detention and the evolving threat of tuberculosis: Evidence, ethics, and law. The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 35(4), 609-15, 512. doi:10.1111/j.1748720X.2007.00184.x

Fidler, D. P., Gostin, L. O., & Markel, H. (2007). Through the quarantine looking glass: Drugresistant tuberculosis and public health governance, law, and ethics. The Journal of Law, Medicine & Ethics : A Journal of the American Society of Law, Medicine & Ethics, 35(4), 616-28, 512. doi:10.1111/j.1748-720X.2007.00185.x

HEALTH OF THE PUBLIC Grace, P. J. (2009). Philosophical foundations of applied and professional ethics. In Nursing ethics and professional responsibility in advanced practice (1st ed., pp. 3-31). Sudbury, MA: Jones & Bartlett Publishers.

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Guido, G. W. (2010). Informed consent and patient self-determination. In M. Connor (Ed.), Legal & ethical issues in nursing (5th ed., pp. 150-194). Upper Saddle River, NJ: Pearson.

Harper, I. (2010). Extreme condition, extreme measures? compliance, drug resistance, and the control of tuberculosis. Anthropology & Medicine, 17(2), 201-214. doi:10.1080/13648470.2010.493606

Negus, J., Viney, K., & Bothamley, G. (2004). The ethics of legally detaining a patient who has tuberculosis. Nursing Times, 100(36), 52-3, 55.

Resnik, D. B. (2005). The patient's duty to adhere to prescribed treatment: An ethical analysis. The Journal of Medicine and Philosophy, 30(2), 167-188. doi:10.1080/03605310590926849

Westrick, S. J. (2009). Ethical decision making. In Essentials of nursing law and ethics (1st ed., pp. 258-265). Sudbury, MA: Jones & Bartlett Publishers.