Thomas F. Kelly, MD, MPH
According to the CDC, tobacco use and obesity are the two primary causes of preventable death in the U.S.; over 400,000 deaths per year are blamed on tobacco use; and about a quarter of the adult population smokes tobacco. Over the last decade untold numbers of dollars have gone into smoking cessation programs. Cities, towns, and states have implemented broad policy initiatives aimed at limiting the exposure to second-hand smoke. What is the prevalence of tobacco use in individuals with MR/DD? A 2003 literature review on the use tobacco products by individuals with MR/DD revealed some interesting information.1 Firstly; rates amongst those individuals living in large institutions were found to be lower, 2.2% and 6.8%, then the rates of smoking amongst those who lived in community-oriented settings: 'community residences' (10.2%), 'community agencies that were vendor-operated' (15.8%), and 'state-run community settings' (9.7%). Interestingly, the smoking prevalence cited in the 'natural family' setting was 4.7%.
The differences represented here point to a generally higher rate of smoking in individuals with MR/DD who live in community-based residencies, with the exception of 'natural family' settings. There could be several reasons for this difference. Some might say that it points to a greater ability of individuals with MR/DD to exert their personal rights in community-based residences. This viewpoint doesn't consider the rights of those co-habiting individuals who may want to live in a smoke free environment without exposure to second-hand smoke. Another way of looking at the increased rate found in non-natural family, community residential settings is that it occurs because of a lack of a meaningful policies or interventions to the issue. Let us not forget that tobacco dependency is classified as a substance use disorder in DSM-IV and, consequently, is an important issue in dual diagnosis. Furthermore, the literature review previously noted, found that the presence of tobacco dependency in those individuals with MR/DD and co-morbid mental illness was 18%; with the highest rates amongst those individuals who have 'borderline' MR (37%) or mild MR (30%).1
The behavior of tobacco use generally begins with volitional acts geared towards some satisfaction of lifestyle or peer acceptance. The 'profit-oriented' tobacco industry establishes or reinforces these motivations and, then, habituation and addiction eventually is established. For consent capacity to be assessed, Ruedrich et al.1 described a four-level approach. The first level is exhibiting the ability to indicate choice. The second aspect of this assessment process has to do with the ability to understand factual information. The third consideration is the ability to appreciate consequences. And lastly, the highest level of consent capacity is the expressed ability to rationalize risks and benefits of any suggested treatment. These four levels imply a fairly high threshold. This fact is complicated by the difficulty in gauging the extent to which consent capacity was ever really assessed from the beginning of the behavior. Historically, cigarettes have been used to reward 'proper' behavior in various residential settings. To what degree individuals with MR/DD are more vulnerable to the 'profit-oriented' tobacco industry is not known. And, also, where on the volitional - addiction gradient any one individual lays is something that is hard to pinpoint.
That said; probably a good number of individuals with MR/DD and tobacco addiction have not had the benefit of proper consent assessments. Ruedrich et al.1 made a very strong conclusion that competent individuals with MR/DD should be expected to display the highest (fourth) level of the capacity to give consent in order to be allowed to smoke. To do less is to expose such a person to higher risks of preventable illnesses such as lung cancer, emphysema, cardiovascular disease, and others. Using this ethical standard to apply such an assessment, one must then ask certain questions. What has been done and what is being done to see to it that such individuals have at least a chance to withdraw from this behavior safely and successfully? And from a policy standpoint, what 'tobacco-fund' monies have gone into the development of targeted prevention programs for this population?
One example that I have recently reviewed is from the ARC of Lincoln, Nebraska. With funds from the Nebraska Health Care Cash Fund and the Nebraska Health and Human Services System, they developed a health promotion curriculum entitled; Smoking Cessation for Persons with Developmental Disabilities.2 This curriculum has a facilitator guide and a participant workbook called "I Want to Quit Smoking!" This curriculum is made up of eighteen educational and motivational lessens. The facilitator information includes several areas which discuss issues related to working with and teaching individuals with MR/DD. There is also a tool which assesses smoking and medical history, environmental issues, and personal reflections and expectations. I would encourage professionals to review it and to think more about this important issue in dual diagnosis.
1 Ruedrich, S et al. (2003). Cigarette Smoking, and the Use of Tobacco Products, by Persons with Developmental Disabilities. Mental Health Aspects of Developmental Disabilities, 6 (3): 99-106.
2 O'Hare, M.(2004). Smoking Cessation for Persons with Developmental Disabilities: Facilitator Guide & Participant Handbook. ARC of Lincoln/ Lancaster County, NE.
Dr. Kelly is the Director of Health Care and Behavioral Services, Division of Developmental Disabilities, Community Service Section, State of Delaware
His e-mail is: email@example.com.
The "U.S Public Policy Update" is an ongoing column in the NADD Bulletin. We welcome your comments, as well as, submissions for this column. To learn more or to contribute to this column, you may contact Joan Beasley, chairperson of the U.S. Public Policy Committee, at firstname.lastname@example.org.