CHALLENGES IN THE ASSESSMENT OF DECISION-MAKING CAPACITY.

INTRODUCTION

We are all presumed to be competent upon reaching the legal age of adulthood (unless otherwise established), at which time we are permitted to vote, sign binding contracts, and so on. Competence is both a legal and societal concept (Dubler 1990; Roth, Meisel, and Lidz 1977). We typically maintain our competence designation until someone questions our ability to participate fully in our society and in decision making regarding our own welfare and property. For older adults, the question of competence often arises with regard to medical decisions when their choices do not match those of care providers or family members. When an older adult's decision-making capacity is questioned, it is often the responsibility of a clinician to evaluate the individual to determine decision-making capacity. The results of this decision-making capacity evaluation (multiple evaluations in some states) are then used in the legal determination of whether the older adult will retain the rights to self-determination.

It was through just such a mismatch between the "decision" of several care providers and that of the individual for whom they were providing care that I was drawn into the development of an assessment instrument. Several years ago, I was approached by a member of the nursing staff of a long-term care facility and told that an older woman was refusing mammography in spite of the fact that her physician believed that she might have breast cancer. I was told that the staff would like me to find the woman incompetent so that they could force her to have the needed test. This was all done out of the beneficence of the staff, who believed they were operating in the best interest of this older woman. I refused the opportunity for an automatic judgment of decision-making incapacity and sought empirically supported guidance from the literature. Unfortunately, the literature offered me only a wide array of unsupported recommendations.

To date, there are no generally accepted practices for assessing decision-making capacity. Several authors (e.g., Grisso 1994; Kapp and Mossman 1996; Moye 1996; Pruchno et al. 1995; Weiler 1991) have argued cogently for the development of assessment instruments designed specifically to aid in the determination of decision-making capacity, notwithstanding concerns over the potential abuse of such instruments (see Kapp and Mossman 1996, for nature of potential abuses). Although these appeals have been compelling, several daunting issues associated with the development of such instruments have slowed instrument development progress.

In the remainder of this article, the challenges faced when considering the development of a decision-making capacity assessment instrument, and some of the more critical methodological and conceptual issues that arise in the development process will be discussed. Experiences from the development of the Hopemont Capacity Assessment Interview (HCAI; Edelstein et al. 1993) will be used to illustrate how one might approach such challenges and issues. The HCAI is a semi-structured interview designed to aid in the assessment of medical and financial decision-making among nursing home residents.

INSTRUMENT CONSTRUCTION: CONCEPTUAL AND METHODOLOGICAL ISSUES

Defining Decision-Making Capacity