Correspondence
Blindness among Nursing Home Residents
N Engl J Med 1995; 333:879-880September 28, 1995
- Article
To the Editor:
Tielsch et al. (May 4 issue)1 are to be commended for their thorough and clinically relevant research on visual impairment in nursing home residents. But why did the authors employ a cognitive examination as a screening instrument to determine whether they would approach subjects or proxies to obtain informed consent? This practice reflects the mistaken notion that the cognitively impaired cannot grant informed consent.
Decision-making capacity is at issue in informed consent, not competency.2,3 The assessment of decision-making capacity occurs during the first two parts of an informed-consent interview: disclosure and understanding. A categorical assessment of competency based on a cognitive-assay score potentially restricts a person's self-determination. I believe that the cognitive screening by Tielsch et al. may have excluded subjects who, although cognitively impaired, may well have possessed sufficient decision-making capacity to consider participation in the study.
Rather than a cognitive examination, perhaps future research can employ a series of standardized questions designed to ascertain whether a potential subject understands the nature of the research proposed. Since much of the research conducted by Tielsch et al. resembles standard clinical ophthalmologic practices, I wonder why informed consent was required at all. Were the risks of the research any more than minimal? Instead of obtaining informed consent from the subjects, the investigators might have considered a practice of informed assent.
3 ReferencesJason Karlawish, M.D.
University of Chicago, Chicago, IL 606371
Tielsch JM ,Javitt JC ,Coleman A ,Katz J ,Sommer A . The prevalence of blindness and visual impairment among nursing home residents in Baltimore. N Engl J Med 1995;332:1205-1209
Full Text | Web of Science | Medline2
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: a report on the ethical and legal implications of informed consent in the patient-practitioner relationship. Vol. 1. Washington, D.C.: Government Printing Office, 1982.
3
Appelbaum PS ,Grisso T . Assessing patients' capacities to consent to treatment. N Engl J Med 1988;319:1635-1638
Full Text | Web of Science | Medline
To the Editor:
Tielsch et al. report a very high rate of visual disability among institutionalized people but do not identify those who might benefit from low-vision rehabilitation. The visual-acuity results were based on distance correction, yet functional loss, especially among the elderly, is more accurately assessed by measuring the ability to perform near-vision tasks, such as reading. Since most institutionalized people have few if any distance-vision tasks, a more appropriate measure would have been the ability to read newspaper-sized print. Reading at this level, no matter how much magnification is required to attain fluency and comprehension, does provide a measure of independence and thereby an improvement in the quality of life.
The accompanying editorial by Klein and Klein1 does discuss various low-vision adaptive devices but omits mention of the root causes of the relative inaccessibility of low-vision services to blind and visually impaired people, especially those who are institutionalized. The rehabilitation of partially sighted people is a painstaking and time-consuming process. Current market forces, especially in this era of managed care, are working against the use of limited resources to “ensure that our independence and joy in living are curtailed as little as possible by limitations in vision.”
The population of the United States is getting older. In the absence of radical changes in reimbursement patterns, we risk relegating an entire population of the old and visually impaired to being “old and in the way.”
1 ReferencesDaniel C. Schainholz, M.D.
Pacific Eye Care, Walnut Creek, CA 945961
Klein BEK ,Klein R . Protecting vision. N Engl J Med 1995;332:1228-1229
Full Text | Web of Science | Medline
Author/Editor Response
The authors reply:
To the Editor: Dr. Karlawish questions our use of the Mini–Mental State Examination to determine a patient's ability to provide informed consent for participation. We fully agree with his distinction between cognitive function and decision-making capacity. That is why a strict cut-off score on the examination was not used to determine who was approached for consent. If a subject scored poorly (<15), the medical and nursing staff of the facility evaluated his or her ability to provide consent and determined whether the subject or a proxy should be approached during the recruitment phase of the study. Regarding the suggestion that perhaps informed consent was not needed because this research resembled standard clinical practice, we can only say that we fully support the well-established principle that requires informed consent when human subjects participate in research, regardless of the level of risk. Whether a process of informed consent or, as suggested by Dr. Karlawish, informed assent is used, the obligation of the investigator to inform study subjects or their guardians fully of the nature and purpose of the research is not removed.
Dr. Schainholz makes an important point regarding the limited access to and use of low-vision services by residents of long-term care facilities. As we noted in our discussion, there is confusion in the ophthalmologic community about the benefits of providing surgical services to residents of nursing homes with cognitive impairment. Similar concern about this population's ability to use low-vision aids must also be addressed. Although we agree that a more comprehensive assessment of the visual status of this population would have included a measure of near vision, tasks involving distance vision, such as watching television and moving around, are also important activities for nursing home residents.
James M. Tielsch, Ph.D.
Joanne Katz, Sc.D.
Alfred Sommer, M.D.
Johns Hopkins University, Baltimore, MD 21205-2103Author/Editor Response
We agree with Dr. Schainholz that much of the functional loss among the elderly is for near-vision tasks, but suboptimal distance vision is important for ambulating, for reading signs and watching movies and television, and for generally appreciating the environment. Tielsch et al. described the distance acuity as measured during an epidemiologic study and gave accurate rates of visual impairment using those criteria. One may infer that the frequency of visual disability for near tasks differs from that of distance disability, and the data clearly suggest a problem of substantial proportions.
We also agree that rehabilitation of partially sighted people requires professional time, although the cost of technology may be relatively small. Our editorial was meant to encourage funding of the necessary professional time and of appropriate aids. Managed-care programs can incorporate support for such rehabilitation, which is especially often needed in the older population.
Barbara E.K. Klein, M.D., M.P.H.
Ronald Klein, M.D., M.P.H.
University of Wisconsin Medical School, Madison, WI 53705-2397
