One of the central issues which arises in the clinical applications of informed consent centers on the ability of the patient to make decisions.⁽¹⁾ For information can only be received and consent given if the patient has the mental and emotional capacity to make the necessary decisions. If the patient lacks this capacity, then the burden for decision-making shifts to the patient's authorized surrogate who possesses decisional capacity.⁽²⁾ The matter of decisional capacity is important for the implementation of the Patient Self-Determination Act insofar as the rights accorded by the law apply directly to the patient with decisional capacity and indirectly to the patient's surrogate. Knowing how to deal ethically with the possession (or lack thereof) of decisional capacity is an essential component of the ethical foundations of the Patient Self-Determination Act.

    The conditions for decisional capacity have received considerable attention in the past generation in proportion to the increasing emphasis on patient autonomy and informed consent.⁽³⁾ When the autonomy of patients was not an important matter for consideration and could be readily ignored, then determining decisional capacity was of no consequence. But once respecting autonomy became a cornerstone of healthcare, the conditions for exercising one's autonomy through making healthcare decisions became increasingly significant.⁽⁴⁾

    Two authors, Paul Appelbaum and Thomas Grisso, have developed a concise conceptual map of the components of decisional capacity by identifying the following four features.⁽⁵⁾ The first component of capacity is the ability of an individual to communicate the choice which she wishes to make. Those without this ability cannot meaningfully participate in decisions about their care unless they have done so in advance of their inability to communicate. Thus, the comatose, the catatonic, and those whose communications are incoherent would be considered lacking in decisional capacity.⁽⁶⁾

    The second component of capacity which they identify is the ability to understand relevant information. This feature does not require that patients have the ability to understand information in every category of knowledge, but only in the categories which are relevant for the healthcare decision at hand.⁽⁷⁾ Thus, an individual may very well be able to make financial decisions but may be unable to grasp the information necessary to make a sound healthcare decision (or vice versa). It is important for caregivers to give some attention to this characteristic because some tests for orientation may have little to do with deciding decisional capacity. And yet great weight is given to them in the clinical setting.

    The third component is extremely difficult to judge in some cases. This constituent is identified as the ability to manipulate information rationally. Caregivers could easily set the standards too high for this test. To satisfy this component, caregivers might be tempted to demand that patients follow the same rules of logic to which they themselves subscribe. However, everyone need not follow the same rules of logic in order to manipulate information rationally. What is basically required is that individuals see the connections between bits of information and that they can establish further connections between the information they have, or are given, and the decisions which they make. Thus, it is not illogical for members of the Jehovah's Witness community to refuse blood products. Their decision is logically related to the information which they have about God's law.⁽⁸⁾ The premises of their decision may simply be different from those of other patients. If the logic is consistent, then the conclusion must be upheld regardless of the content of the decision. While this may be a difficult standard to apply, its application must include a great deal of latitude for the individual differences among patients and their cultures.⁽⁹⁾

    The last feature of capacity which Appelbaum and Grisso identify may very well be one of the most significant. This trait is the ability of a patient to appreciate the situation in which she finds herself and the consequences of the situation.⁽¹⁰⁾ If the patient does not possess this ability then one can confidently say that the patient lacks capacity.⁽¹¹⁾ For example, an elderly patient with already compromised system function may be facing a possible DNR decision. Thus, to be considered as having the capacity to make such a decision, the patient would have to understand the nature of her condition and the extent to which it is compromised. Additionally, she would have to know the likelihood of a "successful" CPR attempt and the outcomes of such an attempt for someone her age and in her condition.⁽¹²⁾ Finally she would have to know the outcomes of a DNR order,⁽¹³⁾ as well as the positive benefits for her care and comfort which a DNR order might provide or foreclose. This is an important feature of capacity because it combines both the canons of informed consent and the trust which a caregiver must have for the patient who may make a decision which may not please the caregiver or the patient's family.

    An additional feature to be considered has been identified by Jonson et al. in their manual, Clinical Ethics.⁽¹⁴⁾ The authors point to the patient's having goals and values as an important component to decisional capacity. This implies that the patient can articulate to some extent the goals and values which she possesses and can make decisions which are consistent with them. Taking into account the values of the patient individualizes the assessment of capacity. For each patient will have a peculiar cast to their set of values and their priorities. As in assessing the ability to manipulate information rationally, so here caregivers must guard against the imposition of their own conceptual and value frameworks, as well as their priorities, on the patient. Patients' values may be significantly different from those of the caregivers or family members but such differences do not point to decisional incapacity in the patient.

    The caution has been repeatedly sounded that, in assessing decisional capacity, one must avoid any standard which would suggest that agreement with the caregiver would be a primary indicator of capacity.⁽¹⁵⁾ When patients make healthcare decisions which are in agreement with their caregivers, the caregivers often simply accept the decision without challenge either to the decision or the patient's decisional capacity. However, when the decision is in disagreement with the caregivers' agenda, the decision is often challenged and, if not changed, the patient's capacity to make the decision often comes into question. Such an approach places the patient in a particularly vulnerable position and virtually strips her of all decisional autonomy unless she can vigorously defend her capacity to make the decision.

    The preferable approach to the relationship between the patient's agreement with the caregivers' preferences and the assessment of decisional capacity would be to view agreement as indicating nothing about the patient's capacity.⁽¹⁶⁾ With this approach, the canons of informed consent would be followed for each decision and the tests for capacity would be applied on their own merits, and only when concerns arise independently of agreements or disagreements. Every decision would be treated equally and require the same kind of test for capacity when questions arise.

    In the fairly recent past, clinical practice often presumed that the patient, who was rendered vulnerable by disease or injury, did not have the capacity to make healthcare decisions, particularly when there was a history of mental illness.⁽¹⁷⁾ The patient was considered to have been made so vulnerable by the disease that she was out of control both of her lifestyle and the ability to return to it. This was based upon the belief that the information required to make the decision was simply out of reach of the patient. Thus, the patient could neither access the information nor manipulate it rationally. Furthermore, the patient's personal stake in the outcomes of the syndrome or therapies was thought to cloud her judgmental abilities. She would be overcome by emotion which would make her unable to appreciate the situation fully. With these beliefs as a background, others were placed in the primary decision-making role, generally the physician.

    In recent times the President's Commission has redirected that attitude.⁽¹⁸⁾ The Commission identifies the proper approach to be that of presuming the capacity of the patient rather than presuming her incapacity. This strategy allows for respect for the patient's dignity and autonomy from the outset. The patient is vulnerable only in some aspects in the clinical relationship. There is no justification for presuming that the patient's vulnerability is extended to the ability to make decisions. It may be true that some patients may find their decisional ability to be compromised by fear or uncertainty. In such cases the proper approach is not to declare them lacking in decisional capacity. Instead they may only need special assistance in making the decisions which they face.⁽¹⁹⁾ More time needs to be spent with them and more assistance provided for them, rather than declaring them lacking in decisional capacity in order to make things more convenient for the caregivers and family members.

    The Patient Self-Determination Act has a direct bearing on the issue of decisional capacity. If one takes the approach to the law that it is important to assist patients, as the President's Commission suggests, in the decisions which have to be made relative to the law, then decisional capacity can be significantly strengthened in the clinical setting. Taking a mechanical approach to the implementation of the law would result in further compromising the patient's decisional capacity and underlying dignity by failing to promote decisional capacity in those who might be on its functional margins. The superficial approach to informing patients about the stipulations of the law could compromise decisional capacity in the areas of making choices, understanding relevant information, and appreciating their situations and the consequences of their decisions. Finally, the lack of information would compromise their ability to manipulate the information which they do have in a rational manner in light of their values and goals. For example, many patients do not realize that they have the right to refuse treatment. Even if they are informed of this right in their initial interview at a healthcare facility, they may not understand the full significance of this right. This might also apply to the matter of drafting an advance directive.

    Assisting patients in processing the various concerns of the Patient Self-Determination Act would enhance their decisional capacity by helping them form appropriate choices about their healthcare. Caregivers will be able to identify the information which patients need and give them the confidence to demand further explanations when those which have been given to them are insufficient. This assistance will give them a better perspective on their healthcare situations and the results of various treatment alternatives, even no treatment as an alternative. Finally, this approach will make it possible for patients to order the information within the context of their values and goals, which the assistance will help them identify and rank according to their personal priorities. All of these efforts will substantially bolster the patient's dignity.

    We can see once again how a perfunctory approach to the Patient Self-Determination Act can diminish the patient in ways which are substantially harmful. This happens when the law is treated as an administrative nuisance to be discharged as conveniently as possible. On the other hand, we can see how careful adherence to the spirit of the law and attempts to make it work fully for the benefit of the patient can enrich the patient's relationship with the caregivers and the institution caring for the patient. The patient's dignity is enhanced which is one of the primary goals of healthcare.

1. The distinction must be made between "decisional capacity" and "competence." "Competence," the more traditional term, is determined by a judge as the result of a legal proceeding. "Decisional capacity" is a functional assessment made by an attending physician or a psychiatrist which has ethical connotations without a strict legal determination. (Cf. The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Bloomington, IN: Indiana University Press, 1987, page 131.)
2. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forego life-sustaining treatment: a report on the ethical, medical, and legal issues in treatment decisions. Washington, D.C.: US Government Printing Office, 1983, pages 126-136.
3. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press, 1989. This text focuses upon the issues surrounding proxy decision-making and the way patient autonomy and well-being may be extended and enhanced through the proper exercise of the decisional authority of surrogates.
4. One of the most detailed analyses of decisional capacity can be found in White BC. Competence to consent. Washington, D.C.: Georgetown University Press, 1994.
5. Appelbaum PS, Grisso T. Assessing patients' capacities to consent to treatment. N Engl J Med. 1988;319:1635-1638.
6. This component does not offer a serious problem. However, the issue of making a choice can become an matter of concern if one requires detailed supporting reasons for the choices which are made. Thus, a competent choice may be a choice expressed by "yes" or "no" responses with no reasons attached. (Cf. Roth LH et al. Tests of competency to consent to treatment. Am J Psychiatry 1977;134:279-284.)
7. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: The ethical and legal implications of informed consent in the patient-practitioner relationship. Washington, D.C.: U.S. Government Printing Office, 1982, page 55.
8. Macklin R. Consent, coercion, and conflicts of rights. Perspectives in Biology and Medicine 1977;20:360-371.
9. This component offers some difficulty for situations of mental impairment. While the logic of the patient in a psychotic episode may seem flawless, the problem rests with the premises of the logical construction. Religious or cultural beliefs, while not always "rational" according to many schemas of "rationality", are not flawed in the same sense as the premises of the schizophrenic. (Cf. Roth LH et al. Tests of competency to consent to treatment. Am J Psychiatry 1977;134:279-284.) A helpful exploration of the importance of being sensitive to beliefs about medical goals and practice in cultures may be found in Pellegrino ED. Intersections of western biomedical ethics and world culture: problematic and possibility. Cambridge Quarterly of Healthcare Ethics 1992;3:191-196.
10. This component differs from the third component (manipulating information rationally) insofar as it addresses only the likelihood of results from the various interventions, given the patient's condition. The third component will very likely involve patient's values, from which a logical conclusion may follow, while the fourth component may not have a value dimension at all. Thus, a patient may make a seemingly competent decision for an intervention which will extend life, while not genuinely understanding that the limitations of the intervention are such that it may not achieve the goal she has in mind.
11. Jonson AR et al. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 4th edition. New York: McGraw-Hill, 1998, page 58-59.
12. A "successful" CPR attempt can be measured in a variety of ways: (1) restoration of heartbeat, (2) survival to leave the hospital, (3) return to a previous level of functioning, (4) achievement of a minimally decent quality of life. (Cf. Landry FJ. Outcome of cardiopulmonary resuscitation in the intensive care setting. Arch Intern Med 1992;152:2305-2308.)
13. Jonson AR et al. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 4th edition. New York: McGraw-Hill, 1998, page 58.
14. Jonson AR et al. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 4th edition. New York: McGraw-Hill, 1998, page 58. Cf. also The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Bloomington, IN: Indiana University Press, 1987, page 131.
15. Roth LH et al. Tests of competency to consent to treatment. Am J Psy. 1977;1344:279-284.
16. The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Bloomington, IN: Indiana University Press, 1987, page 132.
17. Wear S. Informed consent: patient autonomy and physician beneficence within clinical medicine. Dordrecht: Kluwer Academic Publishers, 1993, pages 10-11. It can be as erroneously easy to presume that patients, because of their vulnerability, lack decisional capacity as it is to make the presumption simply because patient do not agree with their caregivers. (Cf. Roth LH et al. Tests of competency to consent to treatment. Am J Psychiatry 1977;134:279-284.) Both presumptions seriously violate the dignity of patients. (Cf. White BC. Competence to consent. Washington, D.C.: Georgetown University Press, 1994. pages 3-5.)
18. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: the ethical and legal implications of informed consent in the patient-practitioner relationship. Washington, D.C.: U.S. Government Printing Office, 1982, page 62.
19. Ibid., page 60.