Thematic analysis

In general, a person's choices regarding care ought to override the assessments of others about what best serves that person. Certain people, however, a r e incapable of making choices that reflect and promote their personal goals and values. Some patients-on account of age, incapacity, or inexperience- have a n insufficiently developed set of goals and values. Some lack sufficient capabilities for understanding, communication and reasoning; among patients facing life-threatening decisions, these faculties are frequently compro- mised. The principles for determining incapacity¹ and for making decisions on behalf of incapacitated patients that were developed by the Commission in its report on informed consent² therefore have special relevance to decisions to forego life-sustaining therapy.

Elements of the Determination. Determining whether a patient lacks capacity to make a particular health care decision requires assessing the patient's capability to understand information relevant to the decision, to communicate with care givers about it, and to reason about relevant alternatives against a background of reasonably stable personal values and life goals.³ The ultimate objective of such a n assessment is to

The term "incapacitated" is used in this Report to refer to patients who lack decisional capacity, rather than referring to general illness or disability. "Incapacity" a s used here is roughly equivalent to the conventional legal usage of the term "incompetent."

President's Commission for the Study of Ethical Problems in Medi- cine and Biomedical and Behavioral Research, MAKING HEALTH CARE

Decisions, U.S. Government Printing Office, Washington (1982) at 169- 88.

Id. at 56-68.

122 Foregoing Life-Sustaining T r e a t m e n t : C h a p t e r 4

diminish t w o t y p e s of errors: m i s t a k e n l y preventing p e r s o n s w h o ought t o b e c o n s i d e r e d c o m p e t e n t f r o m directing t h e c o u r s e of their o w n treatment, a n d failing t o protect incapaci- t a t e d p e r s o n s from t h e h a r m f u l effects of their decisions.

H e a l t h c a r e professionals usually p l a y a s u b s t a n t i a l role i n m a k i n g t h e s e a s s e s s m e n t s ; their c o n c l u s i o n s a r e often n o t r e v i e w e d b y officials o u t s i d e h e a l t h c a r e institutions.⁴

E a c h determination of d e c i s i o n a l i n c a p a c i t y f o c u s e s o n a patient's a c t u a l functioning in a p a r t i c u l a r decisionmaking s i t u a t i o n r a t h e r t h a n simply o n a n individual's a g e o r diagno- sis. T h i s a p p r o a c h i s particularly g e r m a n e for fairly m a t u r e children⁵ a n d for mildly r e t a r d e d o r d e m e n t e d p e r s o n s . W h a t i s r e l e v a n t i s w h e t h e r a p e r s o n i s i n f a c t c a p a b l e of m a k i n g a Determining the patient's incapacity, designating and informing a surrogate, and helping the surrogate to decide may require time that is not available in an emergency. In general, because of its grave nature and consequences, a decision to forego life-saving treatment should be made under conditions that permit consultation, reflection, and reasoned decision. In an emergency, ordinarily treatment ought to be given if no decision has previously been made to forego treatment. See generally Alan Meisel, The "Exceptions" to the Informed Consent Doctrine: Striking a Balance Between Competing Values in Medical Decisionmaking, 1979 Wis. L. REV. 413,436, 476.

Lois A. Weithorn and Susan B. Campbell, The Competency of Children and Adolescents to Make Informed Treatment Decisions, 53 CHILD DEV. 1589 (1982). See also Thomas Grisso, JUVENILES' WAIVER OF

RIGHTS-LEGAL AND PSYCHOLOGICAL COMPETENCE, Plenum Press, New York (1981); Gary B. Melton, Gerald P. Koocher, and Michael J. Saks, eds., CHILDREN'S COMPETENCE TO CONSENT, Plenum Press, New York (1983). Law has traditionally viewed people under a specified age- long set at 21 years and more recently at 18-as incompetent to make decisions about any contractual matters, including their own health care; this reverses the usual presumption of competency accorded adults. Some exceptions have been created for "emancipated" or

"mature" minors, in recognition that sometimes children have ade- quate capacity to make decisions and social policy ought to find such decisions sufficient. The ever-expanding scope of these exceptions calls into question the underlying presumption; it may be more reasonable to ask-of any person at any age-"is this person capable of making this decision?" See A. M. Capron, The Competence of Children as Self-Deciders in Biomedical Interventions, in Willard Gaylin and Ruth Macklin, eds.. WHO SPEAKS FOR THE CHILD, Plenum Press, New York (1982) at 57.

The Commission endorses this general trend, recognizing that there is a n age, below about 1 4 years old, at which the traditional presumption of incompetence remains sensible. The presumption, however, is merely a starting point for inquiry. See MAKING HEALTH

CARE DECISIONS, supra note 2, at 170, n.6, and Sanford L. Leikin, Minors' Assent or Dissent to Medical Treatment, in id.. VOLUME

THREE: APPENDICES (STUDIES ON THE FOUNDATIONS OF INFORMED

CONSENT), at 175.

Inadequate Decisionmaking Capacity 123 particular decision despite his or her youth, retardation, or dementia. Even when ultimate decisional authority is not left with a patient, reasonable efforts often should be made to give the person relevant information about the situation and the available options and to solicit and accommodate his or her preferences.

The Commission recommends that determinations of inca- pacity be made only when people lack the ability to make decisions that promote their well-being in conformity with their own values and preferences.⁶ Rarely-infants and unconscious patients are the main exceptions-is incapacity absolute. Even people with impaired capacity usually still possess some ability to comprehend, to communicate, and to form and express a preference. The fact that a patient makes a highly idiosyncratic decision or has a medical or mental condition⁷ similar to others who have been unable to make decisions that advance their own well-being may alert health care profession- als to the possibility of decisional incapacity, but does not conclusively resolve the matter. "Decisionmaking incapacity"

is not a medical or a psychiatric diagnostic category; it rests on a judgment of the type that a n informed layperson might make-that a patient lacks sufficient ability to understand a situation a n d to make a choice in light of that understanding.⁸ Indeed, when judges are called upon to make legal determina- tions of patients' competence, they consider the situation not a s medical experts but a s laypeople examining the data provided by health care personnel^g and by others who know

MAKING HEALTH CARE DECISIONS, supra note 2, at 172-73.

7 In fact, a diagnosis of a major psychiatric illness only rarely in itself decides the question of the patient's capacity to make a particular treatment decision. There is no necessary correspondence between mental illness and the presence or absence of decisional capacity either in fact or in law. See Rogers v. Okin, 634 F.2d 650, 657-59 (1st Cir. 1980).

See also Mark Perl and Earl E. Shelp, Psychiatric Consultation Making Moral Dilemmas in Medicine, 307 N^EW ENG. J. Med. 618 (1982).

The "mental status examination" is perhaps the best example of how professional expertise can be enlisted in making assessments of incapacity. Such an evaluation is intended, among other things, to elicit the patient's orientation to person, place, time, and situation, the patient's mood and affect, and the content of thought and perception, with an eye to any delusions and hallucinations; to assess intellectual capacity, that is, the patient's ability to comprehend abstract ideas and to make a reasoned judgment based on that ability; to review past history for evidence of any psychiatric disturbance that might affect the patient's current judgment; and to test the patient's recent and remote memory and logical sequencing.

In testimony before the Commission, Dr. Paul Hardy, a neurolo- gist, cited the Earle Spring case a s a n example of need for careful

124 Foregoing Life-Sustaining Treatment: Chapter 4 the individual well, and possibly from personal observation of the patient.

Finally, in any assessment of capacity, due care should b e paid to the reasons for a particular patient's impaired capaci- ty-not because the reasons are the determinant of whether the patient's judgment is to be honored, but because identifica- tion of the causes of incapacity may assist in their remedy or removal.¹⁰ The Commission urges that those responsible for assessing capacity not be content with providing a n answer to the question of whether or not a particular patient is incapaci- tated. Rather they should, to the extent feasible, attempt to remove barriers to decisional capacity.

Procedural Policies. A decision that a patient is incapaci- tated can be of great importance, both in the Commission's ethical analysis and in the function of law. Courts have generally held that, whereas competent patients may forego any treatment, incompetent patients' wishes can be overridden in order to protect their lives and well-being." Since the attention to underlying medical conditions bearing on determinations of competence. (Earle Spring's son petitioned a Massachusetts pro- bate court for permission to stop dialysis treatments for his 79-year- old father who had been adjudged incompetent.)

If there is a...major travesty about the Earle Spring case, it lies in the utter confusion on the part of the judicial community and the medical community on how to go about determining competency

...

There w a s some conflicting testimony a s to whether he w a s indeed competent or not, and there w a s even confusion over the exact medical condition and diagno- sis....[one psychiatrist] never once recognized that Mr. Spring w a s clearly aphasic and made certain determinations about Mr.

Spring's competency based upon Mr. Spring's speech pat- terns..

.

.I think the field of neuropsychiatry and behavioral neurology will be able to help considerably in the months and years ahead to characterize and define whether an individual is competent or not.

Testimony of Paul Hardy, transcript of 10th meeting of the President's Commission (June 4, 1981) at 137-38; In re Spring, 405 N.E.2d 115 (Mass. 1980).

10 See Paul S. Appelbaum and Loren H. Roth, Clinical Issues in the Assessment of Competency, 138 AM. J. PSYCHIATRY 1462 (1981); Loren H. Roth et al., The Dilemma of Denial in the Assessment of Competency to Refuse Treatment, 139 AM.

J.

PSYCHIATRY 910 (1982);

Albert R. Jonsen,Mark Siegler, and William J. Winslade, CLINICAL

ETHICS, Macmillan Pub. Co., New York (1982) at 56-66.

11 Compare Satz v. Perlmutter, 379 So.2d 359 (Fla. 1980); In re Quackenbush, 156 N.J. Super. 282, 383 A.2d 785 (1978); In re Osborne 294 A.2d 372 (D.C. App. 1972), Lane v. Candura, 376 N.E.2d 1232 (Mass.

App. 1978); with John F. Kennedy Hosp. v. Heston, 279 A.2d 670 (N.J.

1971): and Application of President and Directors of Georgetown College, Inc., 331 F.2d 1000, rehearing denied, 331 F.2d 1010 (D.C.

1964). The court's authority to intervene arises largely from the

Inadequate Decisionmaking Capacity 125

threshold issue of capacity is not only so weighty but often so complex,¹² it is of prime importance that assessments of incapacity be made carefully and adequately.

Health care professionals should therefore be familiar with the reason that a careful determination is important a s well a s with the procedures necessary to achieve it. Further- more, health care institutions need to have clear policies a s to who is responsible for assessing incapacity and by what standards. Institutions should ensure that those who assess capacity know the kinds of inquiries to make, the data to collect, and the records to keep. Finally, provisions also need to be made for reviewing determinations of incapacity both within the institution and, when necessary, through a judicial proceeding.

The first questions about a patient's decisionmaking capacity will usually be raised by attending health care personnel or by family members. Although formal legal proce- dures exist for adjudicating incompetency, a determination that a patient lacks the capacity to make some or all medical decisions independently is customarily made extra-judicially;

only rarely is it reviewed in court. The legal status of such nonjudicial determinations is therefore uncertain, though this common practice is endorsed in the routine admonition to physicians to secure informed consent from the patient's next-of-kin,¹³ in institutional regulations,¹⁴ and even in court cases.¹⁵ common-law doctrine of porens patriae, which recognizes that the state, through probate, juvenile, chancery, and other courts, must act as guardian for those people whose interests cannot otherwise be defended.

12 See, e.g., State Dept. of Human Services v. Northern, 563 S.W.2d 197 (Tenn. 1978); Lane v. Candura, 376 N.E.2d 1232 (Mass. App. 1978).

13See, e.g., Consents, 2 HOSPITAL L^AW M^ANUAL, Aspen Systems, Rockville, Md. (1975) paragraph 4-12, at 58; Joseph H. King, Jr., The

126 Foregoing Life-Sus taining Treatment: Chapter 4

Some commentators, however, advocate requiring formal, judicial proceedings for all treatment decisions and especially for decisions to forego life-sustaining treatment on a n incompe- tent patient.¹⁶ Ideally, the courts are better equipped to protect the interests of incompetent patients; unfortunately, judicial proceedings, besides consuming time a n d resources, seem frequently to diffuse responsibility rather than increasing the acuity with which patients' interests are scrutinized.¹⁷

The Commission therefore believes that determinations of incapacity are best m a d e without routine recourse to the courts. The Commission recommends that- except where state l a w clearly requires judicial intervention or where a real dispute persists after intrainstitutional review- determinations of decisional incapacity b e made by the attending physician a n d regulated and reviewed at the institutional level, a n d that those w h o make a n d apply the law b e encouraged to recognize the validity of such determinations. This recognition will require institutions to adopt procedures that merit such defer- ence; in turn, it should reinforce for all participants in the decisionmaking process the importance of reaching a sound determination in each case.

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