Decision-Making: Autonomy, Valid Consent and Guardianship

The objective of this module is to provide information and generate discussion about ethical issues associated with health care decision-making in elderly patient populations. The main categories of issues addressed are as follows:

    Autonomy

    Valid Consent

    Guardianship

Autonomy

Autonomy, typically defined as “self-rule” or “self-determination”, refers to the ability of competent individuals to make decisions over their own lives. In order for autonomy to be meaningful, a competent individual’s decisions should be respected even when those decisions conflict with what others believe to be reasonable. Autonomy includes, but is not limited to, having the freedom to make decisions about our own health care, finances, and living arrangements.

In health care contexts, autonomy entails that competent individuals should be able to decide which medically indicated, effective procedures are appropriate for them. It requires of health care professionals that they respect patients by providing accurate and complete information. In most circumstances, health care professionals have a moral obligation to provide their patients with accurate and complete information. Debates ensue, however, concerning whether “truth telling” is an absolute moral obligation, because it could be argued that a “therapeutic exception” is appropriate in cases in which sharing information might jeopardize the health of the patient.

Over the last few decades, respect for autonomy has come to be recognized as a fundamental principle in bioethics. In general, a patient’s autonomy should be respected even if the patient decides not to follow a health care team’s advice. Respect for autonomy has helped to redefine the physician-patient relationship as patients have become more active participants in making health care decisions. Traditionally, the physician played a more “paternalistic” role in that he/she would largely decide for the patient what the best course of action would be.

One major dispute related to patient decision-making centers on the tension between autonomy and beneficence. Beneficence refers to the notion of doing what is believed to be in another person’s best interests. This concept can conflict with autonomy when a health care professional’s assessment of a patient’s best interests conflicts with the own assessment. Generally, in cases of conflict, the competent patient’s autonomous decisions (or those of the patient’s valid proxy or guardian) regarding health care are respected by the health care team.

With regard to elderly populations, there is concern about whether age, and the physical and mental illnesses associated with aging, erodes autonomy. Prolonged debates have ensued in health care communities about whether elderly patients with conditions such as dementia are capable of making rational decisions. “Dementia” is an ailment generally characterized by the progressive impairment of various cognitive abilities. It typically impairs, memory interferes with judgment and abstract thinking and may cause personality changes as well. Further, a demented person’s appreciation and awareness of his/her own condition can fluctuate during the course of the illness. As a result, physicians disagree about when patients suffering from dementia lose the capacity to make decisions.

A related issue is whether age and illness makes elderly patients vulnerable to being coerced by health care teams and/or family members into making decisions. A significant percentage of elderly patients are poor, lack education about technical medical matters, or are physically and mentally impaired. These conditions can contribute to feelings of helplessness, which can make elderly patients open to being unduly influenced by others. Thus, it is crucially important that health care teams and families listen to and respect the wishes of the patient instead of merely assuming that their own values match what the patient wants.

At times, health care teams and family members might be too quick to label a patient “incompetent” and remove decision-making responsibility from a patient who is still capable of voicing his/her wishes.In some instances, elderly patients prefer to give over decision-making responsibility to a relative or to a friend. Yet this can complicate matters if there is uncertainty about whether the surrogate decision-maker is acting in the best interests of that patient or whether the surrogate is making decisions that are consistent with what patients would actually want. A surrogate or proxy decision-maker is charged with making decisions on behalf of the patient to the best of his or her knowledge of what the patient would have wanted had the patient been able to express his or her own desires. A guardian is charged with deciding on behalf of the patient consistent with the guardian’s understanding of the patient’s best interests. Further, if a surrogate has not been appointed a situation may arise wherein family members argue about what the best course of action is for their elderly relative, which can place the health care team in the unenviable position of having to resolve the dispute.

Questions to Consider:

1) Should a patient’s family have the ability to override the patient’s wishes if they believe that he/she is making a poor decision? Assuming that the individual in question is competent, then family members should not have the ability to override the decision of the patient. Although family members might believe that their relative’s decision is misguided, the patient’s choices are to be respected so long as the steps for obtaining valid informed consent have been followed properly.

2) What is the Patient Self-Determination Act (PSDA)? Enacted by Congress in 1991, the PSDA upholds a competent patient’s right to make choices about his/her own health care, which includes the ability to refuse a medical procedure. A component of the PSDA is to ensure that advanced directives are followed in accordance with a patient’s wishes.

Relevant Links and Resources

    Agich GJ. Autonomy and Long-term Care. New York: Oxford University Press, 1993.

    Bergsma J, Thomasma DC. Autonomy and Clinical Medicine: Renewing the Health Professional Relation with the Patient. Massachusetts: Kluwer Academic Publishers, 2000.

    Bioethics Resources on the Web: Culture and Diversity in Medicine (provided by the NIH)

    Cohen ES. The elderly mystique: Constraints on the autonomy of the elderly with disabilities. The Gerontologist 1988;28 (Suppl.):24-31.

    Gamroth LM, Semradek J, Tornquist EM, Eds. Enhancing Autonomy in Long-Term Care: Concepts and Strategies. New York: Springer Publishing Company, 1995.

    Gauthier CC. Moral responsibility and respect for autonomy: Meeting the communitarian challenge. Kennedy Institute of Ethics Journal 2000;10.4:337-352.

    Lidz C, Fischer L, Arnold RM. The Erosion of Autonomy in Long-Term Care. New York: Oxford University Press, 1992.

    Smyer M, Warner Schaie K, Kapp MB, Eds. Older Adults’ Decision-Making and the Law. New York: Springer Publishing Company, 1996.

Valid Consent

Under most circumstances, valid consent (also referred to as informed consent) must be obtained from a competent patient before a medical procedure is performed. In fact, if a medical procedure is perform without obtaining appropriate consent, that action might be considered battery.

The three fundamental criteria for assuring valid consent are as follows:

Competence: In order for a patient to consent to or refuse a medical procedure, the patient must be competent. There are longstanding debates concerning what competence entails. Identifying criteria for determining whether an individual is competent to make a decision is difficult, but some indicators include whether the person can communicate choices, understand and assess information given to him/her, and appreciate the consequences of a decision.

Being adequately informed: Before giving consent, the patient must be adequately informed about the medical procedures in question. This includes, but is not limited to, being informed by the health care team of the risks and benefits of a given procedure, the likelihood of the procedure’s success, and alternative options to the procedure.

Voluntary/ not coerced: The patient should not be coerced into making a health care decision, meaning that the patient should not be forced against his/her wishes into making a choice. The patient’s decision must be voluntary. Determining whether a person is being coerced is not always easy; a patient can be coerced in subtle ways, including having undue pressure placed on the patient by family members or by the health care team.

Consent is usually obtained through a process where the patient signs consent forms before a procedure is performed. The health care team should clearly and thoroughly explain relevant information to the patient before these forms are signed. Valid consent cannot be given, for example, if the patient does not adequately understand the information presented. A common problem with the consent process is that the language used can be too technical for the intended audience. Elderly patients might be unfamiliar with new medical terms, for instance, because they probably received their formal education decades ago. Hence, health care teams need to use consent forms that reflect what patients will find understandable.

Questions to Consider:

1) What is valid refusal? Valid refusal refers to the ability of a patient to refuse a medical procedure. If a competent individual is adequately informed and is not coerced into making a decision, he/she has the ability to refuse any medical procedure.

2) Are the special challenges associated with obtaining consent in elderly populations? Yes and no. Aging alone does not preclude a patient from being able to give consent. However, since a large number of elderly patients suffer from debilitating mental illnesses, obtaining consent can become a challenge. For instance, there is no definitive marker indicating when a patient suffering from Alzheimer’s disease loses the ability to make health care decisions. Hence, the health care team might need to check the patient’s ability to recall information frequently.

3) Under what circumstances should a patient’s consent be questioned? If any of the three conditions for providing valid consent are not met, then the patient’s “consent” should be re-examined. For instance, if the patient is not a native English speaker, the health care team should take steps, such as using a consent form in the patient’s native language, to make sure that the patient understands the nature and consequences of a medical procedure. Or, if there is concern that the patient has been coerced into a decision by family members, for financial or other reasons, the health care team might want to discuss the decision with the patient while the family is not in the patient’s room.

Relevant Links and Resources

    Alt-White AC. Obtaining “informed” consent from the elderly.West J Nurs Res 1995;17(6):700-705.

    Appelbaum PS, Grisso T. Capacities of hospitalized, medically ill patients to consent to treatment. Psychosomatics 1997;38(2):119-125.

    Auerswald KB. The informed consent process in older patients who developed delirium: A clinical epidemiologic study. American Journal of Medicine 1997;103(5):410-418.

    Dymek MP et al. Competency to consent to medical treatment in cognitively impaired patients with Parkinson's disease. Neurology 2001;56(1):17-24.

    Faden RR. A History and Theory of Informed Consent. New York: Oxford University Press, 1986.

    Food and Drug Administration: A Guide to Informed Consent

    Roberts LW. Informed consent and the capacity for voluntarism. Am J Psychiatry 2002;159(5):705-712.

    The Veteran’s Administration Informed Consent Bibliography for Researchers

    Wirshing DA et al. Informed consent: assessment of comprehension. Am J Psychiatry 1998;155(11):1508-1511.

Guardianship

A guardian is a surrogate decision-maker who has been given the legal authority to make decisions for another individual (the ward). Typically, a guardian is appointed by a court to make decisions for a mentally incompetent individual. A guardian might be needed, for example, to protect the ward from self-harm. Courts usually demand that there is a “sufficient showing” indicating that the person in question is unable to manage life decisions before a guardian is appointed. This may involve detailing how a functional impairment has interfered with the ward’s ability to make rational decisions.

Each state is empowered to appoint surrogate decision-makers for incompetent individuals although the circumstances and procedures for appointing guardians may vary by state. In Florida, the guidelines for selecting a guardian, and the duties associated with being a guardian, are utlined in Florida Statute Chapter 744. The state guidelines for selecting a guardian for health care related issues are outlined in Florida Statute Chapter 765-Part II.

A guardian can be chosen in advance of a situation that would require his or her assistance. Arranging for the appointment of a guardian can help ensure that the ward’s best interests are pursued. Increasingly, however, guardians are being appointed in situations where an incompetent patient does not have an advanced directive and there is no identifiable family member or friend available to assist in decision-making. Guardians are charged with making medical decisions

Courts can grant guardians different types of decision-making powers. A “plenary” guardian is given the power by a court to make bothhealth care and financial decisions for a ward. A guardian ad litem is given the temporary authority to represent a ward during a legal proceeding. “Limited” guardianship refers to when a court delineates the circumstances and situations under which a guardian is allowed to make decisions for a ward even though the ward may be competent to make some decisions. “Voluntary” guardianship refers to situations in which a ward explicitly grants a guardian the power to assist that ward with decision-making. Generally, this type of guardianship can be halted by the ward if he/she believes that having a guardian is no longer necessary.

Questions to Consider:

1) What are the potential drawbacks to appointing a guardian? When a guardian is appointed, the ward may lose some of his/her rights, the degree to which depends on the type of guardian appointed. For instance, a ward may lose the right to enter into contracts and manage financial resources. Further, although guardians are appointed to protect the interests of their ward, they might not be familiar with the ward’s wishes, especially if they had never met the ward.

2) What safeguards are in place to ensure that guardians make appropriate decisions for the individuals that they are entrusted to protect? The monitoring of guardians varies greatly by state. In most states, guardians are required to provide a report to a local court on the status of their ward once or twice a year. Typically, guardians must detail the condition of their ward and disclose financial activities related to their duties. In Florida, the reporting duties of guardians are delineated in Florida Statute Chapter 744.367 The Committee on Guardianship Monitoring also oversees and reports on guardianship programs in the state of Florida.

Relevant Links and Resources

    The Florida Bar Online: Guardianship

    Florida State Guardianship Association

    Zimny GH, GT, Eds. Guardianship of the Elderly: Psychiatric and Judicial Aspects. New York: Springer Publishing Company, 1998.

    Hommel PA. Guardianship reform in the 1980s: A decade of substantive and procedural change. In Smyer M, Warner Schaie K, Kapp MB, Eds. Older Adults’ Decision-Making and the Law. New York: Springer Publishing Company, 1996.

    Hornung CA. Ethnicity and decision-makers in a group of frail older people. Journal of the American Geriatric Society 1998 ;46 (3):280-286.

    National Guardianship Association

    Statewide Public Guardianship Office

    Sugarman J et al. How proxies make decisions about research for patients with Alzheimer’s disease. Journal of the American Geriatric Society 2001;49:1110-1119.