Societal Attitudes and Alcohol Dependency: The Impact on Liver Transplantation Policy.
Liver Transplantation and Disability
Heralded as one of modern medicine's greatest triumphs and a second gift of life, liver transplantations have become a routine procedure in the past several years and a valid treatment option for end-stage liver disease (Batey, 1996). Factors accounting for this trend are primarily medical advancements such as immunosuppression and surgical procedures which have greatly increased survival rates of liver transplant recipients. With continued advancement of medical technology, liver transplantation as a form of treatment will undoubtedly become an option to a broader range of potential candidates (Twillman, Manetto, Wellisch, & Wolcott, 1993).
The United Network for Organ Sharing (UNOS), a national data bank for organ transplant facts and statistics, reported that between 1988 and 1996 the number of annual liver transplantations performed more than doubled (UNOS, 1997). Unfortunately, not all candidates received liver transplants. Over the past nine years the year-end waiting list for liver transplants has increased at an average rate of 36.7% per year (UNOS, 1997). In 1996, 954 people died on the waiting list, while 4062 liver transplantation procedures were completed (UNOS, 1997). While an 81% transplant rate may be exemplary, who receives a transplant and why warrants careful examination.
Addressing these concerns in a managed care environment can be quite complex. For organ transplantations in general, the discrepancy between the number of available donor organs and those in need remains a consistent source of contention. Establishing criteria for who has priority, and ultimately who gains access to these services, is difficult at best. This has been especially true with respect to liver transplantations.
Because medical centers are faced with increasing surgical costs, pressure for positive outcome statistics, competition for funding, and a shortage of donor organs at large, there is a need for careful candidate selection. Although, the current criteria for selection is based primarily on medical factors, moral and ethical considerations assume an important role. For instance, persons with disabilities, specifically those with alcohol dependency, often face difficult exclusion criteria based more on morality stemming from a lack of understanding of the disability than from a lack of overall medical urgency. In fact, certain characteristics (i.e., those outside of medical need) held by candidates may impact receiving or not receiving a transplant. More influential in donor organ allocation may be the perception or stigma attached to such characteristics. In other words, service providers (e.g., physicians, social workers, policy makers) with the power of deciding who receives a transplant and who does not, may make distributive decisions that are influenced by their beliefs or perceptions about candidate characteristics. Individuals who are alcohol dependent and in need of a new liver may elicit such behavior.
Often misunderstood is the fact that alcohol dependency is a disability defined by such federal legislation as the Americans with Disabilities Act (ADA). Moreover, alcohol dependency is a disability of hidden proportions affecting 10-13 million of the U.S. population (Emener, 1993; Kinney & Leaton, 1991). Although theories and beliefs surrounding the etiology of alcohol dependency are abundant, the association between alcohol and the destruction of the human liver is a medical fact. Each year, over 25,000 Americans die from chronic liver disease and cirrhosis, the eighth leading cause of death in the U.S. (American Liver Foundation, 1997). Currently, there are no effective treatments for life-threatening end-stage liver diseases, except liver transplantation (Brenner, Davis, & Friedman, 1997). The primary cause of cirrhosis in the U.S. remains alcohol, and one-third of those currently dependent on alcohol are estimated to reach this end-stage liver disease (ALF, 1997). Worman (1997) further suggests between 10-15% of persons with alcohol dependency have cirrhosis at the time of death. Consequently, persons with alcohol dependency make up a large proportion of candidates in need of liver transplantations.
Some medical centers, however, will not provide liver transplants for persons with alcohol dependency because they believe a substantial percentage of these individuals will return to drinking (ALF, 1997). Other centers may require abstinence from alcohol six months before and after transplantation surgery, as well as additional counseling. Although persons with alcohol dependency are more likely to develop liver failure, they may not be allotted a proportional distribution of donor organs. Examining societal attitudes that potentially influence public policy and health care professionals may help explain this trend.
Societal Attitudes and Public Policy
Culturally shaped attitudes toward persons with disabilities pose a significant barrier to full participation in society and access to societal resources. Bogdan and Biklen (1977) described this process as "handicapism," or the hidden barriers faced by persons with disabilities from society's unequal treatment based on assumed differences or deficiencies. Over a decade later, the ADA provided civil rights legislation intended to protect persons with disabilities in important areas such as employment, public accommodations, state and local government services, and communication. Kilbury, Benshoff, and Rubin (1992) discussed how the ADA could potentially impact negative societal attitudes by increasing accessibility and social interaction between persons with disabilities and the nondisabled. Kilbury et al. demonstrated that the positive effect of this interaction would improve public attitude which in turn would generate favorable public policy regarding disability.
Although defined within the ADA as a disability, there appears to be difficulty in defining a person with alcohol dependency as a person with a disability. For example, to be covered by the ADA, individuals with alcohol dependency must be abstinent from illegal drag use and they must currently be in treatment or have previously attended treatment (Shaw, MacGillis, & Dvorchik, 1995). This extra condition, relevant only to those with alcohol or drug abuse issues, may reflect the influence of societal attitudes towards persons with disabilities on public policy.
Societal responses toward persons with disabilities may be determined by the perceived responsibility for the disability (Rubin & Roessler, 1995). Alcohol dependency is widely perceived as a "self-inflicted" disadvantage based on willpower. Therefore, a society with such a perspective will likely treat persons defined as alcohol dependent adversely (Rubin & Roessler, 1995) and show less compassion (Orcutt & Cairl, 1979). More so, those perceived as responsible for and succumbing to their condition will be viewed less favorably than those perceived as responsible for and coping with their condition (Shurka, Siller, & Dvonch, 1982). This may explain the ADA's treatment condition for alcohol dependence: an individual who is in treatment or who has been in treatment may be considered as coping and, therefore, be deserving of compassion or favorable societal response.
Societal response to persons with disabilities is not solely influenced by perceptions of responsibility. The extent to which members of a society perceive persons with disabilities as a "threat" will also dictate response (Arokiasamy, Rubin, & Roessler, 1995). For example, the "war on drugs" is the epitome of perceived threat to personal safety; the very words in this phrase suggest that alcohol and drug abusers are enemies of the American people (Statman, 1993). Persons who abuse alcohol and drugs are also perceived as a threat to economic security by communities who fear a reduction in property values upon the establishment of high risk rehabilitation centers such as drag treatment facilities (Arokiasamy et al., 1995). Media images tend to confirm these perceptions, especially when linking violent acts and substance abuse. Digesting these images and philosophies of "war" may lead society to conclude that persons who abuse alcohol and drugs are not worthy of compassion, especially in the form of a liver transplant. This lack of compassion is justified by society's perception of being the victim of such people (Szasz, 1977). Ultimately, this perception may negatively affect the public's willingness to donate needed organs (DeJong, Drachman, Gortmaker, Beasley, & Evanisko, 1995).
In the end, society's response to persons with disabilities can be more disabling than a functional limitation or particular disability. Supporting the theory of societal attitudes dictating public policy (Hahn, 1985), these attitudes towards persons with alcohol dependency can be directly seen in liver transplantation policy.
Liver Transplantation Policy
Currently, selection of transplant recipients depends primarily on medial urgency and waiting time (UNOS, 1997). For persons who are alcohol dependent, however, long-term prognosis post transplantation is assumed to be dependent upon abstinence from alcohol (Beresford & Lucey, 1994). An assessment of the patient's effort to maximize chances of achieving longevity and health along with a psychosocial posttransplant intervention has been suggested (Beresford et al., 1990). Specifically, Beresford et al. (1990) suggest the following prognostic factors in determining the probability of continued sobriety: (a) the extent to which alcohol dependency has been accepted by the patient and family as a presenting problem, (b) the degree of social stability, and (c) the extent of life-style changes positively associated with sobriety. However, recent reports suggest that many persons with alcohol dependency have maintained sobriety post transplantation (Starzl et al., 1988; Tripp, Clemons, Goldstein, & Steward, 1996). In fact, overall survival rates and psychological complications for persons with alcohol dependency have been found to be no different than other groups (Batey, 1996; Beresford, Schwartz, Wilson, Merion, & Lucey, 1992). Additionally, liver transplantation recipients with alcohol-related end-stage liver disease have been found to consume alcohol, post transplantation, in similar proportions as liver transplant recipients without alcohol-related liver disease (Blanford & Moore, 1996). According to Caplan (1994), these findings undoubtedly question the moral issue of whether personal responsibility should be taken into consideration when allocating scarce and expensive resources. For if persons with alcohol dependency are achieving similar successful outcome rates compared to other groups, and consume alcohol in similar proportions (a leading exclusion criterion), then the denial of liver transplants to persons with alcohol dependency is likely to be based more on values than on objectivity or science.
Caplan (1994) examined three moral arguments for excluding persons with alcohol dependency from access to liver transplants. First, society's prevailing moral argument asserts that persons with alcohol dependency do not merit a larger share of society's resources because their situation or medical condition is voluntary or self-inflicted. Second, Caplan notes that some would argue against equal access to liver transplants for those who are at a high risk of future harm to themselves. In the case of persons with alcohol dependency, the fear is that they will continue to use alcohol post transplantation. Third, Caplan explains that some would claim that permitting access to transplants to those with cirrhosis, hepatitis, or other liver complications resulting from alcohol would make alcohol abusers the majority in transplant recipients and thereby "alienate the general public." This third argument examined by Caplan resonates society's long-term fear and resulting stigmatization of persons with disabilities. For example, in the 1800s, persons with mental illness were frequently tortured, warehoused, and isolated from the society due to the fact that society equated cognitive disabilities with criminality. More recently, the fear of contagion surrounding HIV/AIDS has lead to discrimination, isolation, and the protest of children with HIV/AIDS attending public schools. Society's fear of persons with disabilities affecting economic well-being is another example. Society has held a prevailing perception of persons with disabilities as a "welfare drain" (Arokiasamy et al., 1995). Employers have held erroneous fears that hiring persons with disabilities would ultimately increase their worker's compensation rates, lower overall productivity, and increase expenditures due to modifications of the workplace. The result of such fear has led to persons with disabilities becoming discriminated, segregated, isolated, and unemployed.
In response to the moral arguments for exclusion, Caplan (1994) contends, even without discussing whether alcohol dependency is a voluntary "choice," these arguments hold little weight. First, if access to services is related to the cause of a disability, should we then reexamine other disabilities that result from voluntary risks to one's health? For example, should persons who smoke, play professional football, disregard exercise, expose themselves to excessive sun, fight fires, or police our streets have less of a right to the access of health care services because of the voluntary decision to engage in such risky activities or professions (Caplan, 1994; Rubin & Roessler, 1995)? Second, because recent reports suggest low recidivism rates (Starzl et al., 1988; Tripp et al., 1996), similar proportions of alcohol consumption (Blanford & Moore, 1996) and similar survival rates and psychological complications compared with other groups (Batey, 1996; Beresford et al., 1992), the risk of future harm is an insignificant exclusion criterion. Finally, Caplan (1994) notes that although there is a risk of alienating the public by creating a majority of transplant recipients who misuse alcohol, many medical fields (e.g., psychiatry, psychology, infectious disease, oncology) must manage with this same reality. There appears to be no easy solution to this problem. However, as Caplan (1994) and Cohen and Benjamin (1991) suggest, society's response to the discrimination and stigmatization surrounding liver transplantation policy should not be to exclude patients who might benefit from such treatment or related services. Rather, society should provide education concerning the importance of fair access to services for those in need and strengthen efforts to find solutions to potential precipitating factors such as alcohol abuse.
The impact of liver transplant policy on potential recipients is evident. Life-style and personal responsibility have become a highly debated criterion for deciding the allocation of health care resources in organ transplantation. Persons with disabilities such as alcohol dependency are often assumed to have a lower probability of achieving successful outcomes due to high recidivism rates. In effect, transplant teams in the past have feared providing the "alcoholic another chance to destroy a second liver," when the viable organ could have been allocated to another candidate (i.e., a person not dependent on alcohol) with an assumed greater chance of maximizing quality of life. Ultimately, this lack of general consensus concerning the etiology of alcohol dependency combined with a moral conceptualization of dependency in general, limits the access of persons with disabilities to liver transplants.
Negative societal views appear to impede the progress of a fair and just allocation of donor organs. The association between societal perceptions and transplant policy culminates with health care professionals, the enforcers or interpreters of such policy. However, decisions of organ allocation are not made within a vacuum: dominant societal values and attitudes also potentially influence professional decision-making. That is, professionals essentially reflect those values held by others in American society (Gatens-Robinson & Rubin, 1995). Professional and life experiences can have a significant impact on how service providers define "valuable" human life. Therefore, enforcement or interpretation of transplant policy (i.e., assessment procedures and candidacy criteria) will reflect the moral and ethical framework of health care professionals; as policy and professionals are both influenced by society. Describing this complex relationship in terms of ethical principles, such as justice, should provide guidance to professionals when making resource allocation decisions as well as assist in the interpretation of moral responsibility (Millard & Rubin, 1992).
According to Beauchamp and Childress (1989), "scarcity and competition make [distributive] justice a troublesome ethical problem" (p. 49). With limited donor organs and high demands, the distribution of organs requires a specific criterion for the fair allocation to all candidates. Philosopher John Rawls described justice in terms of fairness and fundamental rights (Beauchamp & Childress, 1989), while professions such as rehabilitation refer to the principle of justice as the fair allocation of monies, resources, and time (Gatens-Robinson & Rubin, 1995). Six criterion are often applied in distributive justice:
1. equal shares,
3. motivation and effort,
5. free-market exchange, and
6. fair opportunity.
Three of these criterion appear to operate in the current allocation of resources in liver transplantation for persons who are alcohol dependent.
First, the criterion of need considers the allocation of services to patients with the greatest necessity. Medical urgency is a significant criterion in the transplant recipient selection process. Second, the criterion of motivation and effort calls for greater allocation of services delivered to patients demonstrating higher motivation for longevity and compliance. This coincides with Beresford et al. (1990) who suggest the examination of a patient's commitment to sobriety. Those patients with greater support systems and predicted compliance are assumed to benefit more from transplantation. Third, the criterion of contribution would allocate a greater proportion of services to persons with similar disabilities based on their contribution to society. Veterans are often considered in this criterion; however, of recent concern are those contributors to society by other means such as entertainment and athletics who have received liver transplants with relatively short waiting time. This third criterion has also led to public skepticism about the integrity and fairness of the current organ distribution system (DeJong et al., 1995). The concern is that this skepticism will lessen the public's willingness to donate needed organs (Caplan, 1992).
According to the UNOS (1991), the most significant principles to be used in the allocation of scarce organs include: medical utility, justice, and autonomy. A relevant criterion missing in the current system, however, is fair opportunity, an extension of the Fair Opportunity Rule. This rule states that persons should not be granted or denied social benefits on the basis of undeserved advantages for which they are either not responsible, or occur by chance (Howie, Gatens-Robinson, & Rubin, 1992). Beauchamp and Childress (1989) state, "Properties distributed by the lottery of social and biological life are not grounds for morally acceptable discrimination between persons if they are not the sorts of properties that people have a fair chance to acquire or overcome" (p. 271).
As stated earlier, how society defines alcohol dependency may influence professional decision-making and resource allocation. For example, if persons with alcohol dependency are seen as responsible for their health problems and disability, then special benefits may not be distributed. On the other hand, if alcohol dependency is viewed as a product of social and biological factors, then according to the Fair Opportunity Rule, they would receive additional benefits to counterbalance these disadvantages determined by the lottery of life. John Rawls suggests that all abilities and disabilities are a product of a natural and social lottery. Embracing the Fair Opportunity Rule, Rawls suggests the goal should be to amend the unequal distributions created by undeserved advantages in an attempt to create greater equality. According to Rawls, evening out the distribution of disabilities based on these lotteries of life would coincide with society's conception of justice (Beauchamp & Childress, 1989).
Adopting the fair opportunity criterion would allocate more services to those with disadvantages such as persons with alcohol dependency. The effort behind this criterion is a just distribution of resources. Denying social benefits on the basis of privilege or rank is not just. However, providing greater access to health care for those at a disadvantage would begin to create equal access to services in a just manner. The current selection of transplant recipients appears to oppose this criterion. Excluding groups based on disability is discrimination regardless of scarce resources. At stake is the determination of for whom and for what reasons we allocate the second gift of life.
With liver transplantation becoming a valid and routine treatment option, the rehabilitation needs of those with alcohol-related liver disease would be in jeopardy if access to services continues to be denied. This denial seems opposed to the philosophy of social inclusiveness that resonates throughout the ADA. As public policy, the ADA mandates that persons with disabilities are not to be denied services because of assumed or true differences and/or deficiencies. Ultimately, effective services such as liver transplantation may increase the potential for social inclusiveness (e.g., employment) and enhance quality of life.
Analysis of the potential impact of societal attitudes on liver transplantation policy indicates that these complex questions raised in a managed cared environment necessitate complex solutions. What is clear is that there does not appear to be a sound medical, scientific, or moral reason to exclude persons with alcohol dependency as candidates for liver transplantation. Personal judgment on a patient's virtue should play no part in deciding who will receive care and who will wait. Assigning a group based on a disability a lower priority in gaining access to health care is an argument for discrimination. The current system for the allocation of donor organs needs to be reexamined with an emphasis on the patient's right to equal access to health care. A system designed to allocate resources in a fair and just manner would be another triumphant success in the organ transplant field.
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Robert L. Hewes, Rh.D., CRC, CAS, Assistant Professor, Rehabilitation Services Department, Springfield College 263 Aldent Street, Springfield, MA 01109. firstname.lastname@example.org
Robert L. Hewes Springfield College
Paul J. Toriello Southern Illinois University
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|Author:||Toriello, Paul J.|
|Publication:||The Journal of Rehabilitation|
|Date:||Apr 1, 1998|
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