Chapter 6: Rights, Truth and Consent

Section 3. Presentation of Issues

Rights, Truth and Consent

You often hear it stated that there are rights. That humans have rights, basic rights, civil rights and so on. Just what are rights and what are they in the context of Medicine and Health Care?  If a person has a right to privacy and a right to be informed of alternative treatments and a right to make decisions for one's own care that has a definite bearing on how health care and medical services and research takes place. So it is quite important to have some idea of what rights are and how they operate.

Rights

For philosophers the subject of rights is quite complex. For our purposes what is presented below should serve well.

Rights : Rights are Entitlements, Just Claims, or Liberties.  They are powers or privileges which human persons may exercise should they so choose. Rights are what persons are entitled to and should be provided to them should they not be able to provide themselves. Rights are that to which people are justly entitled.

"Justified expectations about the benefits other people or society ought to provide. We are entitled to our rights in the sense that others have a moral obligation to respect them.

At an individual level, my duty to act toward you in a certain way entails your corresponding right to my performance of that action. "

(Dictionary of Philosophical Terms: http://www.philosophypages.com/dy/r9.htm#rights )

(see also: Encyclopedia of Philosophy http://www.iep.utm.edu/h/hum-rts.htm  )

Features of rights:

A. Permissive : one can choose to exercise or claim a right or not to do so.

B. Imply duty : the exercise of rights entails the imposition of duties upon others

C. Protective sphere : the existence of a right establishes a sphere of decision making that is or ought to be protected by society or secured by law to the individual and respected by others

Duties

"What we ought to do; an action that people are required to perform; the practical content of a moral obligation. "

(Dictionary of Philosophical Terms: http://www.philosophypages.com/dy/d9.htm#duty)

A. Permissive : one can choose to exercise or claim a right or not to do so.

One may have a right to something and yet choose not to exercise that right.  For example although people may have a right to own property in the form of land or vehicle or clothing, they may choose not to own such property.  People who have a right to travel may choose not to do so.  People who have a right to seek medical assistance for themselves may choose not to do so.  Of more concern is what occurs when people do choose to seek medical care.  What then are their rights?

B. Rights entail duties (relative and conditional)

Wherever there is a right there is a correlative duty; e.g., the right to life, the right to privacy, the right to certain information under specific circumstances these impose on others the duty not to kill another, not to invade another's privacy and for specific others a duty to provides information  under specific circumstances, respectively.  So,  Rights and Duties are correlative terms. Wherever there is a right it imposes correlative duties on all others. If someone has a right to life it imposes on all others the duty not to take that life.  This would be a duty not to do something and is thus a negative right.  There are several basic ways in which to classify rights.

  • Negative Rights - impose a duty on others to refrain from doing something; e.g., right to life, health, property, vote
  • Positive Rights - impose a duty on others to provide something;  e.g., right to food, shelter, health care

Rights may be also be divided into a variety of categories:

  1. Claim Rights - based upon self asserted claims
  2. Legal Rights - created by an act of the legislature
  3. Moral Rights-- based upon ethical principles

In this text the focus will be on moral rights.

c. Statements of rights are warnings against interference

A right is permission to do something that is protected by law. Others are expected not to interfere with the exercise of rights.  In the case of positive rights others are obliged to take some action to provide the persons exercising their rights that which they have a right to have if they can not provide it for themselves.  If a person has a right to food and does not have the means to acquire it then others must provide for it.  This can be done through some collective action such as taxation that supports social welfare programs that provide for the goods and services to which the right holders are entitled.   The imposition upon others to act in some specific manner relative to the right being exercised leads some theorists to hold that the only rights are legal rights.  Without the force of law to support a claim of a right well then the right is meaningless or imaginary.

  • Real laws >>Real rights
  • Imaginary laws>> imaginary rights

Such claims of rights without the support of an act of legislation or court decree or judgment are merely assertions of values and goals.

However there are also those who claim that legal rights are not the only rights.  They hold that some rights are moral ideals and that other rights are political ideals.  Such rights lead to legislated entitlements.

For the purposes of this text the focus will be on rights as based on ethical principles and others based on legislation and court decrees.  In other words the rights that will be spoken of here are of the moral or legal variety.

How are the recipients of health care to learn of their rights?  There are a variety of sources:

  • books
  • websites
  • physicians
  • nurses
  • friends
  • educators

Within the institution of medicine and health care the provision of this information becomes part of the responsibility of providers of health care.  In addition to being informed of such rights by the physician, which does occasionally take place, nurses have as part of their role serving as advocates for the recipients of their care.  As previously stated this means that the nurse would be involved in assisting those for whom nurses provide care in a number of ways , including:

  • Informing persons served by the nurse of their rights
  • Supporting persons served by the nurse in the exercise of their rights
  • Defending the rights of those served by the nurse
  • This advocacy goes against the culture of all bureaucratic systems, e.g., the hospital system.

    The rights that are spoken of in the context of medical research and health care involve those of self-determination, privacy and basic dignity.  How these rights are involved in medical research and practice and how they are challenged is the principal subject of this chapter.

    If people are autonomous moral agents capable of and responsible for making decisions concerning their own health and that of those entrusted to their care then they would have the right not to be coerced or ignored in the decision making that they do.  This is the right of Autonomy.

    If people have the right of self determination then they have the right not to be interfered with through the application of coercive measures nor through the indirect manipulative measures of being denied information or being given partial information or misleading information, including untruths.  People would have the right to being properly informed about the situation they confront and the freedom to choose amongst the options available that one which is most consistent with their values.  This is the right of Informed Consent.

    If people are autonomous moral agents capable of and responsible for making decisions concerning their own health and that of those entrusted to their care then they would have the right not to place under the stress of their deliberative process and actions being revealed to others.  There would be a right to privacy.  Where information must be revealed to others in order for the appropriate care to be rendered then there would be a right of confidentiality through which a person would be confident that information being provided will be kept confined to those to whom that person grants permission to have that information.  This is the Right of Privacy and for Confidentiality.

    As people have a basic right to life then they would have the right to the means to preserve their lives.  If such means involve health care to what extent is this a right and how would it be exercised and satisfied?

    If these basic rights exist and people chose to exercise them then the duty falls upon others to insure that the rights are respected.  If it is a negative right then people must refrain from infringement or violation of those rights.  If people have a right to health then others must not injure their health.  This would mean that health care providers and researchers must not cause harm to them or in any way deliberately cause their health to worsen.

    If there is a positive right then others must insure that whatever is the entitlement is provided to those who hold that entitlement.  Thus if a person is entitled to information in order to make an informed decision then others must provide it.  How much, by whom and in what manner become the questions to be answered in the context of health care and research.

    If a person is entitled to health care then others must insure that the care is rendered to the holder of the entitlement.  How much care and by whom it is to be provided are major questions to be addressed and answered.  The developed countries of the world have all been dealing with this matter for some time.  Different answers have been put forward and different systems have been are are being tried.  More on this in the last chapter.

    Bills of Rights

    The source  of a person's legal and moral rights are located respectively in the law and in the principles of an ethical theory.  The rights are not a gift of any agency or association or individual.  There is in the health care institution the instrument known as a "Bill of Rights".  These instruments are issued by organizations of professionals in health care.  They are variously known as the Hospital Patient's Bill of Rights, The Dying Patient's Bill of Rights, the Cosmetic Surgery Patient's Bill of Rights  and so on.   In a recent newsletter published by the American Chronic Pain Association a copy of the "Pain Patients' Bill of Rights" was included.  The first and most famous of such "bills" was issued by the American Hospital Association (AHA) in 1973. AHA: Patient's Bill of Rights.

    Unless the items in such listings are rooted in law they carry no weight. The existence of such documents presents the appearance of the issuing organization being the source of the rights.  Those that grant such rights would also be able to take them away.  This is not the case.  The AHA is neither the source of those rights and has no authority to remove anyone's legal or moral rights.  Those that grant the rights would have responsibility to enforce those rights by some actions against those who transgress.  This is not the case in any effective manner with the AHA or other professional group issuing such bills of rights.  It is the licensing agencies of the political organizations, the states, that are the effective enforcement agency against transgressions against rights.  Further the appearance of such documents presents the appearance that those items in the listing are the entire set of rights.  This is also not the case.  For those interested in what their legal rights are as recipients of care and services they should consult the legal authorities.  There are publications and organizations that offer assistance.  Several of such for different situations are produced by the American Civil Liberties Union.  They include:

    Annas, George, et al. The Rights of Doctors, Nurses and Health Professionals. New York: Avon Books, 1981.

    Annas, George. The Rights of Hospital Patients. N.Y.: Avon Books, 1976. (ACLU)

    Ennis, Bruce and Siegel , Loren. The Rights of Mental Patients. N.Y. Avon Books, 1973. (ACLU)

    Robertson, John A.  The Rights of The Critically Ill. N.Y.: Avon Books, 1983. (ACLU)

    Organizations that issue such documents are performing an educational function for their members and are sensitizing them to some of the entitlements of those whom they serve.  They are also providing some advice that if followed might minimize the exposure to lawsuits for the health care providers.

    If the claim of a right is to be respected and for such declarations of rights to have an influence on actual behavior and practices then the right would need to be supported either by an act of legislation or judicial decree.  The assertion of a right based on moral grounds is often insufficient to secure a respect for and observance of the right claimed.  Those who want their rights to be recognized often work through the legislative or judicial process to gain the support needed. 

    In the USA there have been many people concerned about the acknowledgement of some basic tights in a health care institution that has drastically increased the amount of care and services provided through health maintenance organizations or HMO's .  This has lead to a variety of proposals and a great deal of political activity intended to produce a legislative act to provide for recognition of some set of entitlements for the recipients of care.  Many of the proposals have been termed as "Patient's Bills of Rights."  Some of the proposals and acts deal with privacy and confidentiality, others deal with access to care or the appeals from denials of care. Such activity is likely to continue as part of the process of transforming and expanding health care in the United States.  Similar process are evident in other countries.

    Basic Rights

    Recognizing and respecting and exercising the basic legal and moral rights within the health care institution is not a straightforward and simple process.  There are many factors that come into play in even the simplest situations.  There are many complex issues related to these basic rights.  Click on each of the topics immediately below and learn more about each and learn something of the complexity of each and why they are matters for serious consideration.

    AUTONOMY

    INFORMED CONSENT

    TRUTH TELLING

    CONFIDENTIALITY and PRIVACY

    ===========================================================

    APPLICATIONS:

    Applying the Ethical Principles of the basic traditions to some of these issues and cases.

    Egoism as a moral theory offers no clear resolutions to any moral dilemmas as it is so subjective.  For egoists there are no rights for anyone to be respected unless it providers the decision maker with some form of personal satisfaction or pleasure to do so.  This being the case there are no guidelines or rules for an egoist with respect to recognizing the rights of others or accepting and acting upon their duties with respect to others exercising their rights.

    For Utilitarians autonomy is not an absolute value.  Individual freedom could be restricted if it provided for the greater benefit of society.  Concerning both State paternalism and Personal Paternalism in most cases the principle of utility supports only a theory of values and goals and not  any absolute right or privilege. John Stuart Mill held that individual right to choose is to be restricted only by the Harm Principle. Likewise, confidentiality can be breached to promote the General Welfare.  Mill opposed Strong Paternalism.  Several critics of his position claim that his argument on behalf of weak paternalism also would support strong paternalism. (See the materials under Paternalism in the presentation on Autonomy.) 

    In a similar fashion Utilitarianism can support violations of Confidentiality and Privacy in the interest of General Welfare.  Whatever produces the greatest utility is justified for Utilitarians.  Likewise on the issue of truth telling Utilitarians are mindful of the consequences and if such that utility is maximized lying and other deceits would be morally justified.

    For Immanuel Kant people are autonomous rational moral agents are not to be treated as a means to any other end than themselves.  The Categorical Imperative supports the basic rights to the truth and confidentiality and is opposed to coercion in any form and to lies and placebos.  There is the obligation to fulfill promises and the Right of Confidentiality is as a promise either in an implicit or explicit form in the context of the relationship between the recipient of care and the providers of that care. Kant supports a theory of moral rights. No adult autonomous rational persons are to be touched for medical services or research without their informed consent.

    Individuals may opt to waive confidentiality in whole or in part.  They could grant permission to others to share information concerning their medical condition.  Such permissions cold be and most likely would be specific and restricted.

    Individuals may opt to grant permission to others to act on their behalf and even to make decisions on their behalf.  There are exceptions to this granting of a proxy decision making authority.  Persons who have moral obligations cannot surrender their decision making authority nor their obligation to have information needed to make decisions in a rational manner if that would jeopardize the fulfillment of their other moral obligations.  Thus a parent could not tell a physician not to inform the parent of the actual nature of their condition and their prognosis and estimated lifespan if doing so would place them in a position where they would be diminished in their capacity as guardian to look after the welfare of those entrusted to their care, e.g., their children and other dependents.

    For a Kantian placebos are not to be used if they are used in a manner deceiving to the recipients of care or would subject an ill person to a treatment less effective than other known treatments that are already proven effective. An autonomous moral agent could volunteer to be a subject of an experiment only if it did not subject the person to possible harm or, if they are ill,  to a treatment less effective than other known treatments that are already proven effective.

    For John Rawls and his Maxi Min Principle every person has a right to be treated as an autonomous moral agent who is to be granted a maximum of liberty consistent with that of others. Rawls supports the right of Informed Consent.  However, this theory supports state paternalism of the restricted kind- e.g., regulations and licensing that is protective of basic rights and promotes health.  Rawls acceptance of prima facie duties would hold that personal paternalism would be morally objectionable. Likewise, as Confidentiality is a form of promise it too would be observed and its violation would be a violation of liberty and could lead to  further disadvantages that would be a violation of the Difference Principle.  Truth telling becomes an duty or obligation connected to the right of informed consent that rests upon the Liberty Principle.

    Natural Law Theory favors paternalism in both personal and state forms to promote a natural good such as the health of individuals and society as a whole. It holds that the physician must act in the best interests of the those they serve and protect and promote life. At times this provision of care may need to involve an act of paternalism.  Such acts might also be performed despite the refusal of the recipients of the services.  This could be so if those who refuse treatments were deficient in rational capacity or knowledge or not.  Individuals may be considered over wrought with short sightedness or emotions and fail to understand or accept what is in their own interests or those of society in terms of the natural good of health.  In a similar fashion as health care providers are more knowledgeable about health matters they might know the natural health interests of the recipients of their care better than they do and thus while they should tell them the truth concerning their conditions they may at times withhold some information or allow them to believe something that is not accurate in order to secure their cooperation with the care the hcp believes to be in the best interests of the recipients of their care.

    Natural Law Theory while supporting respect for privacy as a means to secure trust and provide for care to restore or preserve health would also support violations of confidentiality in order to secure the avoidance of additional illness or harm to anyone, including the recipient of care.

    The application of the principles of the various ethical theories will always be within the context of the specific situation and the moral dilemmas posed by the factors present as well within the more general social setting and the factors that environment contains that bear upon the situation.  It requires serious effort and reasoning to arrive at possible resolutions of dilemmas that are morally acceptable, given the principles the decision makers hold as the basis for their morality.  This text is providing some familiarity with the basic principles and some examples of how people have applied them and how one might go about doing so.

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    Copyright Philip A. Pecorino 2002. All Rights reserved.

    Web Surfer's Caveat: These are class notes, intended to comment on readings and amplify class discussion. They should be read as such. They are not intended for publication or general distribution.

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