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The Future of Organ Transplant Psychiatry
Special Articles The Future of Organ Transplant Psychiatry ARTHUR M. FREEMAN
III,
M.D., JAMES
LoRI L. DAVIS, M.D.,
J.
R.
WESTPHAL M.D.
WESLEY LIBB, PH.D.
The future of organ transplant psychiatry depends less on immunologic and surgical advances than on J) an increased supply of donor organs. 2) more sophisticated multicenter outcome studies, and 3) understanding of the subjective as well as objective aspects of compliance and quality of life for transplant recipients. Fromfuture studies, we may improve the selection process for candidates and discover which approaches are optimal for anxiety. depressive. organic mental, and personality disorders. Absolute contraindications to transplantation may become relative. Integration of ethical concerns with biomedical and psychosocial criteria for selection will challenge future investigators given the inadequate supply of donor organs. (Psychosomatics 1995; 36:429-437)
T
he origin of solid organ transplantation depended on advances in immunology. Since the first cardiac transplantation in 1967. significant improvement has been made in the detection and management of rejection. transplant-related infection. and recipient selection. Cyclosporine immunosuppression. introduced in 1980. has led to I-year survival rates for cardiac transplantation greater than 80%. with 5-year survival rates of 66%-70%.1 Further development of immunosuppressive agents. such as FK-506 used in liver transplantation and OKT3 monoclonal antibody and improvement in tissue matching and organ preservation. have facilitated developments in renal. lung. pancreatic. bowel. bone marrow. and other organ transplantation. Currently. I-year survival rates of 75% in Iiver2.3 and more than 90% in renal 4 transplants are expected. In a study of I-year survivors. 67% to 80% were reported to be fully rehabiIitated. 5-8 The future of solid organ transplantation will not solely depend on advances in immunology. The critical issues of the shortage of donor organs and rapid expansion of the recipient pool will foster innovations to increase the supply of VOLUME 36. NUMBER 5. SEPTEMBER - OCTOBER 1995
donor organs. such as the use of nonhuman donors (xenotransplantation). split grafts (using one liver for several recipients). and nonheartbeating donors (cadaver organs).9 In the field of heart transplantation. innovations beyond the boundaries of organ transplantation include the development of artificial hearts and leftventricular assist devices. The shortage of donor organs is a reality that has generated interest in careful candidate selection lO and prompted intense discussion of the ethical issues surrounding transplantation. I I Liver transplantation for alcoholic individuals is the one of the most discussed topics in this area. 12
Received January 22. 1993; accepted November 3. 1994. From the Depanment of Psychiatry. Louisiana State University (LSU) School of Medicine. Shrevepon; the Depanment of Psychiatry. Southwestern University Medical Center, Dallas. Texas; and the Depanmenr of Psychiatry. University of Alabama School of Medicine. Binningham. Address reprint requests to Dr. Freeman. Depanment of Psychiatry, LSU Medical Center. 1501 Kings Highway. Shrevepon. LA 71130-3932. Copyright © 1995 The Academy of Psychosomatic Medicine. 429
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"absolute" contraindications across the field of organ transplantation are biomedical criteria of active infections. malignancy, and end-stage failure of another organ. I The psychosocial criteria also vary by solid organ type and by transplant center. Cardiac transplantation programs have the most stringent psychosocial criteria; renal programs. the most lenient; and liver transplant programs have taken a moderate position in using psychosocial criteria. I? This is in direct correlation to the degree of unmet demand for the specific organ. 4 Psychosocial criTHE SUPPLY OF DONOR ORGANS teria include the absence of recent drug or alcohol use. a history of medical compliance. The supply of donor organs falls far short of the absence of suicidal behavior. absence of psydemand. In 1989. 1.673 hearts were trans- chosis, adequate neurocognitive function. and planted in the United States. While assessing adequate social and financial support. Overall. the different fields of organ transthe accurate number of potential recipients is difficult. some clinicians believe 10 times the plantation have learned much from each other 1989 total could have been transplanted. More about both biomedical and psychosocial selecconservative. recent data tion criteria. As more clinical experience is from the United NetThis article by Drs. Freeman, Westphal. work for Organ Shargained. defined "abDavis. and Libb is the 10th and last article solute" contraindicaing (UNOS) suggest in the JO-part series of critical review arrithat a total of 18.665 ortions become less cles. edited by Deane Wolcott. MD .. that rigidly defined. IS Also. gan transplants were have examined organ transplantation psy- as more psychosocial done in 1994. The chiatry. Topics examined in the series included research is done. the UNOS national patient the relationship of organ transplantation "relative" psychosowaiting list surpassed and psychiatric aspects of specific organs cial contraindications 38,000 in February may be removed com1995. 14 An article in and candidates, neuropsychiatric and phar19921~ stated that the macologic issues. and psychoactive substance pletely. especially if donor shortage crisis abuse. The editors welcome the responses they are shown to had reached "alarmhave little relationand suggestions of interested readers. ing" proportions. The ship to a poor outNovember 1994 UNOS come. data suggest more than 36,000 potential recipiThe origins of organ transplantation used ents are on waiting lists. '6 Thus, with demand "lifeboat" ethics. with an emphasis on a utilitargreatly exceeding supply. the future will depend ian. social worth approach. IS There is no pubboth on increasing the supply of organs or organ lished study on ethical criteria variation among substitutes and resolving the ethical and psy- organ transplant programs. as was done with chosocial concerns in recipient selection. psychosocial criteria. It would be interesting to determine if variability in this area is also correlated with unmet demand. Selection Criteria Different ethical approaches could be used The medical criteria for .acceptance into a to redefine the current recipient pool and the transplantation program vary by solid organ concept of accepted notion of benefit (ANB). type and. to some extent, by center. The only The ANB model uses medical need. the estiAs the technical sophistication of solid organ transplantation advances. treatment regimen noncompliance has become a major cause of late posttransplant mortality and morbidity. 13 Predicting noncompliance by using psychiatric methods has gained increasing importance. In this article, we will assess the progress and recent developments in the ethical and psychosocial criteria of solid organ transplantation. especially as they relate to the definition of the recipient pool.
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mated time to death, and estimated quality of life after transplantation to select potential recipients. Different ethical approaches can expand or contract the recipient pool. Surman and Portillo offer four other ethical approaches: 18 duty-driven, patients' rights, utility-driven, and scientific progress-driven. The debate on which approach to use in transplantation will ultimately not only involve the medical profession, but also policymakers, patients and their families, business, and the courts. The decisions will directly affect the size of the recipient pool and the rigidity of the selection criteria. As managed care controls larger portions of the patient population, the utility-driven cost-benefit approach may gain popularity. FUTURE USE OF PSYCHOSOCIAL CRITERIA FOR SELECTION While the protocols for selection for transplant on psychosocial grounds differ significantly among centers and organ type, in the future it is likely that these criteria will converge, especially if criteria become based on carefully collected outcome data. The development and use of standardized evaluation instruments and the creation of a national database would accelerate this process. The first step of this process has started with the development of several standardized instruments. Psychosocial Assessment of Candidates for Transplantation (PACn I9 was the first transplantation evaluation instrument, published in 1989. The Psychosocial Levels System 20 was published in 1991, and a refinement of this scale, the Transplant Evaluation Rating Scale (TERS),21 has shown significant correlation with outcome variables in one study. The next step is to develop multisite collaborations by using a standardized evaluation instrument and a set of standardized outcome measures. OUTCOME AND COMPLIANCE Since duration of life following transplantation has improved significantly, research has shifted to quality-of-life issues. This follows from the VOLUME 36. NUMBER 5. SEPTEMBER - OCTOBER 1995
ANB approach, which uses duration and quality of life to determine benefit. The field of renal transplantation leads this area of research, with three published studies that have compared quality of life in transplantation patients and dialysis patients. 22 - 24 Identifying meaningful and relevant facets of life quality will constitute a major task for clinicians involved in the evaluation and treatment of patients undergoing organ transplantation. 25 One recent study has identified improved cognition as a significant factor in liver transplantation patients' quality of Iife. 26 This work will expand to the point that each organ-specific field will have a list of the critical quality-of-life variables in their patient populations. Future research will more clearly define the relationship between quality of life and compliance. Although some very compliant patients do not experience a good outcome or quality of life and some poorly compliant patients have good outcomes, nonetheless, clinicians both experientially and intuitively recognize that compliance is a critically important factor for good outcome. In fact, most psychosocial research of the past has been done because of a need to identify those candidates who will comply with the medical regimen. 21-3o Expanding the scope of this future research may include correlating levels of compliance and specific quality-of-life variables. The subjective aspects of quality-of-life measurement will be emphasized more in the future. 3o Previous psychosocial research has attempted to be "objective" by emphasizing such factors as return to work, income, marital status, and functional disability.31 At the subjective level, the value of life (whether encumbered with medical illness or not), as evaluated by individual patients, is the most important. J2 Some believe that the value of a transplant lies in eliminating the dysphoria caused by ill health and organ failure. IMPROVEMENTS IN PREOPERATIVE ASSESSMENT Of necessity, preoperative assessment will be comprehensive and extensive in the future as 431
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patients await their organ for longer time periods. Occasionally. this may work to the benefit of the patient. For example. the patient who presents with depression may be treated successfully with medications and psychotherapy during the wait. 33 However. the negative side is the question of how severe the survival rates will be affected by such long delays in obtaining a suitable organ. Approximately 20% of patients awaiting cardiac transplantation died in 1989. 4 Future psychosocial assessments will be better correlated with medical and ethical criteria. because all three are closely linked and evolve in concert during the process. The development of evaluation instruments (e.g.• the TERS)21 that are correlated with outcome will facilitate the development of specific risk factor evaluation as a component of the psychosocial assessment. Given the uncertainty and the fluctuation of conditions while awaiting this scarce resource. in the future the stress level of patients. families. and the medical staff will clearly not diminish.1.33-39 CHANGES IN AlTITUDES ABOUT CONTRAINDICATIONS TO TRANSPLANTATION The absolute contraindications to transplantation include active infection. malignancy. and end-stage failure of another vital organ. 40 Relative contraindications include age greater than 65. recurrent disease. diabetes. noncompliance. psychosis. chemical abuse. and inadequate social support. 40 These lists change often and will continue to evolve in the future as more clinical data are acquired. An example is the University of Pittsburgh's criteria for liver transplantation in AIDS patients. 41 One trend is that of greater flexibility in defining a contraindication. Movement can be in either direction. in that what is relative now may become absolute with more experience. Conversely. it is likely that clinicians will become less rigid about absolute contraindications. especially for the organs with the least unmet demand. 42 The greater number of relative contraindications can be attributed to a smaller 432
database concerning psychosocial influences on medical outcomes. Psychosocial factors will take on greater significance in the future. especially as attention to the subjective status of patients increases. 43 However, a harsher view of the future in which demand even more significantly outstrips supply is that of a time in which only rigidly defined medical criteria will be used. This presents an ethical dilemma. because many conscientious clinicians believe that in periods of donor scarcity. even greater attention should be given to psychosocial factors. particularly the subjective aspects involved in the decision making. The relative psychosocial contraindications may be removed completely if they are not predictors of poor outcomes. For example. it has been reported from several centers that chemically dependent patients who have periods of abstinence may not only survive liver transplants. but also often function well psychosocially.12.~9 The question then becomes whether patients who are chemically dependent should receive liver transplants at the same frequency as other patients. Other patients with psychiatric diagnoses have been transplanted with favorable results. An example of a relative contraindication that may become more rigid is the presence of personality disorder. The postoperative outcome of patients with personality disorders will be scrutinized and evaluated more carefully in the future. because these disorders may be more persistent and pervasive modifiers of outcome and subsequent quality of life than the more successfully treatable Axis I disorders. PSYCHIATRIC ASSESSMENT IN THE FUTURE Psychiatric assessment in the future will cover as exhaustively as possible all relevant past and present clinical factors. More refined assessments of personality by DSM-IV; by biological markers; and by careful psychometric evaluations. including the Minnesota Multiphasic Personality Inventory and other personality inventories. will supplement assessment of the PSYCHOSOMATICS
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current illness, past disorders, suicidal potential, previous treatment, previous compliance, chemical dependency, family history, social supports, educational and occupational history, ambivalence about surgery, cognitive functioning, anxiety, and depression. 50 Preoperative assessment will thus provide diagnoses of significant mental illness, including substance abuse and severe personality disorders; include treatment recommendations; establish a baseline mental status exam for future comparison; and give support both to the patient and to the family. The use of standardized mental status examinations with component scores such as the Neurobehavioral Cognitive Status Exam 51 will allow more detailed evaluation and monitoring of cognitive status. The development of evaluation instruments such as the TERS 21 that are correlated with outcome will facilitate the development of focused psychosocial interventions in the transplant waiting period. Preoperative assessment will also provide education about what to expect emotionally during the various stages of transplantation, the possible side effects and interactions of medications, and effective treatments for stress. This is a comprehensive multidisciplinary task. An expanded concept of suitability for transplantation will result in more sophisticated recommendations to surgeons. The hope is that future selections will be more informed by evolving research findings concerning our ability to predict psychosocial outcomes and compliance.4 Fortunately, in the future, more aggressive treatment of psychosis, chemical dependency, and severe depression should result in more patients being suitable for a transplant. Future studies will assess the effects of postoperative stress, complicated medical regimens, and the side effects of immunosuppressive medication (particularly the neurologic side effects)52 and their potential interaction with psychotropic medication. 49 Careful ethical analyses will help determine whether diagnosing a personality disorder, mental retardation, or a variety of other mental disorders represents bias or discrimination. 18 To VOLUME 36. NUMBER 5 • SEPTEMBER - OCTOBER 1995
the extent that clinicians are advocates for their patients, they may underdiagnose mental illness. To the extent that they perceive a lack of social worth in a patient, countertransference issues may accentuate psychiatric diagnoses. IMPROVEMENT OF POSTOPERATIVE OUTCOMES OF PATIENTS WITH PREOPERATIVE PSYCHIATRIC DISORDERS In the future, data will accumulate concerning the postoperative outcome of patients with psychiatric disorders. A study that followed 70 cardiac transplant patients reported that 14 of the 19 patients recommended with "reservations about suitability" developed postoperative medical or psychiatric complications. 25 While this study demonstrated a significant relationship between preoperative psychiatric disorder and postoperative complications, future studies with larger numbers of patients may reveal different relationships. In another related study, only 4 of 17 patients with preoperative psychiatric disorders who received transplants had significant postoperative noncompliance. 53 This suggests that many such patients may have a potentially successful outcome. The study also strengthens the recommendations of psychiatric treatment for the noncompliant or psychiatrically diagnosed patient rather than automatic denial of transplantation.· Reviews of organ transplantation psychiatry conclude that the basic tasks for the future are improvement of patient selection, prediction of noncompliance, and assessment of posttransplantation rehabilitation. '3 .48 These concerns will be addressed by well-designed clinical investigations in the future. Previous studies have correlated the various stages of the heart transplant procedure with specific psychiatric disorders for those stages. I ,54 This form of clinical thinking can prepare treatment teams for, as examples, treating anxiety in patients awaiting transplant, or managing delirium postoperatively. Closer relationships between psychosocial variable and medical outcomes will be addressed by future 433
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research. Not only will more studies be done with alcoholic cirrhotic patients who receive a liver. but several-year follow-up studies will define their long-term status compared with other patients with different diagnoses leading to hepatic failure. 48 An example of this type of work is the poor prognosis of liver transplants in Asians with hepatitis B. H This knowledge will enlighten the ethical debate about who should be prioritized to receive a liver and whether patients with a history of substance abuse or a specific racial and infectious status should be excluded. Some standardization of the length of abstinence will likely be obtained between transplant centers in the future. Perhaps rather than specific Axis II disorders. certain personality characteristics that cross diagnostic entities such as hostility. extreme dependency. and persistent demands for attention may be found in future clinical studies to be detrimental to transplantation outcome. Behavioral traits. rather than specific Axis II disorders. may be more clinically relevant. Optimally. we can predict that surgeons and internists will see the importance of preoperative psychiatric evaluation. particularly that which leads to enhanced survival rates and enhanced quality of Iife. 56 IMPROVED QUALITY OF LIFE Early research in transplantation focused on issues of survival such as infection. immunosuppression. and rejection. As transplantation surgery has advanced. more recent studies have shifted to include quality-of-life variables. 57-58 The emotional. social. familial. and work adjustments following a transplant have taken on increasing importance. Defining quality of life precisely remains an elusive task. Numerous measures have been proposed and may be categorized into a psychometric approach and a decision theory approach. 59 The first includes separate measures of psychopathology, such as anxiety. depression. and cognitive dysfunction. The psychometric approach is highly focused and may yield a biased perspective. Decision theory is another way to look at 434
quality of life. The Quality of Well-Being Scale. which developed based on the Rand Corporation research. is an example of this method. 58 It yields quality-adjusted life years. derived from comprehensive data. by multiplying the number of years an individual lived in a given condition by the overall total quality-of-Iife score for that period. Recent advances in decision theory postulate that not all factors in a major decision such as whether to have a transplant are of equal weight for all persons. 60 One year in a wheelchair with frequent visits to a hospital may be very desirable for a 65-year-old grandmother. but less desirable for the 45-year-old physician. The variety of expected utility theory proposes a model that includes both survival duration and quality of life. It emphasizes the subjective value ofthe combination of duration and quality of life that could result from the choice. Thus. expected utility theory advocates systematic identification of subjective choices. This personal "existential" emphasis in research will be increased in the future. Many investigators using the psychometric approach have shown that a complicated medical course after surgery profoundly affects quality of life. 61 -64 Subjective effects from immunosuppressive drugs. rejection episodes. infections. and rehospitalizations are primary determinants of quality of life for many patients. However. it is often observed that many patients can tolerate these events with relative maintenance of quality of life. For some. changes in body image. sexual functioning. and finances may be more important than the previously mentioned concerns. 57 Careful identification of the relevant "objective" life events and the subjective appraisal of those events for each patient will be important in the future for both clinical and research endeavors. FUTURE RESEARCH Although the person's personal sense of outcome is critical. group comparison data remains important. This poses difficulties because of appropriate ethical constraints on obtaining control group comparisons. as there can be no PSYCHOSOMATICS
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randomly assigned groups for this critical procedure. Within-subject designs offer an infrequently used alternative. In the future. clinicians will use more sophisticated quality-of-life measures that combine subjective and objective measures in larger. widely selected samples of patients. In addition. quality-of-life research will address the special needs of pediatric transplant recipients. especially the effect of transplantation on development. 65 Quality-of-life research will also expand to measure the effects of transplantation on family members. 4.65 A broader range of cognitive assessments preoperatively and postoperatively will be used instead of simple screening instruments. 58•60 Physical measures such as EEGs may be included in cognitive assessment. The PACT I9 criteria and National Heart Transplantation Study selection criteria will be modified as we come to understand their interrelationship. Each patient's outcome is influenced by different variables. Some persons require less intensive relationships and social support than others. While we will strive for objective instruments. those instruments that incorporate subjectivity will also be developed. The reliability data published on the PACT suggests high agreement on the measure of psychological health. with lowest agreement on substance abuse. 19 The most important question may be how these dimensions are related to compliance. Simplification could be possible if several dimensions are highly correlated with compliance. Deeper understanding of the causes and definition of compliance will. in the next decade. reduce the need for some psychosocial and cognitive research. A few candidates may be prevented from obtaining a transplant who would be compliant even in the face of their diagnosed psychopathology. Future studies should consider that painful likelihood. Consideration of the amount of cognitive function necessary for compliance is currently a matter of clinical judgment. Increasingly. the moderately mentally retarded will be transplanted as future research supports their enjoyment of satisfactory quality of life. 4 • 18 Also. VOLUME 36. NUMBER 5 • SEPTEMBER - OCTOBER 1995
those patients with more adaptive personality styles will be more favorably considered for a transplant. 25.63-65 Thus. the surgeon who chooses to transplant an individual will consider not only physiology but also compliance and quality of life as well. It may be discovered that personality and cognition have an enormous impact on compliance and quality of life. Discrimination will be lessened in the future because of ethical application of research findings. In a legal sense. avoiding violation of the Rehabilitation Act of 1973. which prohibits discrimination against persons with disabilities. will extend to the mentally ill. the mentally retarded. and the physically disabled. The question of who can donate a precious organ will be clarified. We will have data to distinguish the patient who will care for the organ optimally and have the best chance of obtaining the maximum in duration and life quality from the patient who would squander a scarce resource. However. economics in the form of type of medical coverage will determine to some extent who receives an organ. The first come. firstserved method will not. however. be viewed as entirely appropriate. Nor will the situation in a region that has more donors and thus more transplantations necessarily mean that unequal access is justified. Ideally. future studies will integrate biomedical findings. psychosocial factors. and ethical analyses in the selection of candidates for organ transplantation. 64 .6H8 The hope for synthesis is that psychosocial research that addresses the relevant medical and ethical issues will provide the best opportunity for harmonizing the different concerns.
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55. Ornery A. Jurim Oded. Busullil RW: Transplanting Asian patients with hepatitis B: should poor outcomes innuence decision to proceed? UNOS Update 1994; 10:11 56. Freeman AM. WallS D. Karp R: Evaluation of cardiac transplant candidates: preliminary observations. Psychosomatics 1984; 25: 197-207 57. Jones BM. Chang VP, Esmore D. et al: Psychological adjustment after cardiac transplantation. Med J Aust 1988; 149:116--122 58. Bush JW: General health policy model/quality of wellbeing (QWB) scale, in Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies. edited by Wenger WK. Malison ME. Furberg CD. et al. New York. Le Jacq Publishing. 1985, pp 287-297 59. Kaplan RM: Health-related quality of life in cardiovascular disease. J Consult Clin Psychol 1988; 56:382-392 60. Miyamoto JM. Eraker SA: A multiplicative model ofthe utility of survival duration and health quality. J Exp Psychol Gen 1988; 117:3-20 61. O'Brien VS: Psychological and social aspects of hean transplantation. Hean Transplantation 1985; 4:229-231 62. McAleer MJ, Copeland J. Fuller J. et al: Psychological aspects of hean transplantation. Hean Transplantation 1985; 4:232-233 63. Craven J. Bright J, Lougheed DC: Psychiatric. psychosocial and rehabilitative aspects of lung transplant. in Pulmonary Considerations in Transplantation. edited by Mauer J. Grossman R. Philadelphia. PA. WB Saunders. 1990 64. Craven J. The Toronto Lung Transplant Group: PostOPerative organic mental syndromes in lung transplant recipients. J Hean Transplantation 1990; 9: 129-132 65. Stuber ML: Psychiatric aspects of organ transplantation in children and adolescents. Psychosomatics 1993; 34:379-387 66. Mai FW. McKenzie FN. Kostuk WJ: Liaison psychiatry in hean transplant unit. Psychosom Med 1984; 46:80-8 I 67. Jonsen AR: Ethical issues in organ transplantation. in Medical Ethics, edited by Veatch RM. Boston. MA. Jones and Banlell. 1989 68. WOlcoll DL: Psychiatry's role in the second gift of life. Psychosomatics 1990; 31 :91-97
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LoRI L. DAVIS, M.D.,
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R.
WESTPHAL M.D.
WESLEY LIBB, PH.D.
The future of organ transplant psychiatry depends less on immunologic and surgical advances than on J) an increased supply of donor organs. 2) more sophisticated multicenter outcome studies, and 3) understanding of the subjective as well as objective aspects of compliance and quality of life for transplant recipients. Fromfuture studies, we may improve the selection process for candidates and discover which approaches are optimal for anxiety. depressive. organic mental, and personality disorders. Absolute contraindications to transplantation may become relative. Integration of ethical concerns with biomedical and psychosocial criteria for selection will challenge future investigators given the inadequate supply of donor organs. (Psychosomatics 1995; 36:429-437)
T
he origin of solid organ transplantation depended on advances in immunology. Since the first cardiac transplantation in 1967. significant improvement has been made in the detection and management of rejection. transplant-related infection. and recipient selection. Cyclosporine immunosuppression. introduced in 1980. has led to I-year survival rates for cardiac transplantation greater than 80%. with 5-year survival rates of 66%-70%.1 Further development of immunosuppressive agents. such as FK-506 used in liver transplantation and OKT3 monoclonal antibody and improvement in tissue matching and organ preservation. have facilitated developments in renal. lung. pancreatic. bowel. bone marrow. and other organ transplantation. Currently. I-year survival rates of 75% in Iiver2.3 and more than 90% in renal 4 transplants are expected. In a study of I-year survivors. 67% to 80% were reported to be fully rehabiIitated. 5-8 The future of solid organ transplantation will not solely depend on advances in immunology. The critical issues of the shortage of donor organs and rapid expansion of the recipient pool will foster innovations to increase the supply of VOLUME 36. NUMBER 5. SEPTEMBER - OCTOBER 1995
donor organs. such as the use of nonhuman donors (xenotransplantation). split grafts (using one liver for several recipients). and nonheartbeating donors (cadaver organs).9 In the field of heart transplantation. innovations beyond the boundaries of organ transplantation include the development of artificial hearts and leftventricular assist devices. The shortage of donor organs is a reality that has generated interest in careful candidate selection lO and prompted intense discussion of the ethical issues surrounding transplantation. I I Liver transplantation for alcoholic individuals is the one of the most discussed topics in this area. 12
Received January 22. 1993; accepted November 3. 1994. From the Depanment of Psychiatry. Louisiana State University (LSU) School of Medicine. Shrevepon; the Depanment of Psychiatry. Southwestern University Medical Center, Dallas. Texas; and the Depanmenr of Psychiatry. University of Alabama School of Medicine. Binningham. Address reprint requests to Dr. Freeman. Depanment of Psychiatry, LSU Medical Center. 1501 Kings Highway. Shrevepon. LA 71130-3932. Copyright © 1995 The Academy of Psychosomatic Medicine. 429
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"absolute" contraindications across the field of organ transplantation are biomedical criteria of active infections. malignancy, and end-stage failure of another organ. I The psychosocial criteria also vary by solid organ type and by transplant center. Cardiac transplantation programs have the most stringent psychosocial criteria; renal programs. the most lenient; and liver transplant programs have taken a moderate position in using psychosocial criteria. I? This is in direct correlation to the degree of unmet demand for the specific organ. 4 Psychosocial criTHE SUPPLY OF DONOR ORGANS teria include the absence of recent drug or alcohol use. a history of medical compliance. The supply of donor organs falls far short of the absence of suicidal behavior. absence of psydemand. In 1989. 1.673 hearts were trans- chosis, adequate neurocognitive function. and planted in the United States. While assessing adequate social and financial support. Overall. the different fields of organ transthe accurate number of potential recipients is difficult. some clinicians believe 10 times the plantation have learned much from each other 1989 total could have been transplanted. More about both biomedical and psychosocial selecconservative. recent data tion criteria. As more clinical experience is from the United NetThis article by Drs. Freeman, Westphal. work for Organ Shargained. defined "abDavis. and Libb is the 10th and last article solute" contraindicaing (UNOS) suggest in the JO-part series of critical review arrithat a total of 18.665 ortions become less cles. edited by Deane Wolcott. MD .. that rigidly defined. IS Also. gan transplants were have examined organ transplantation psy- as more psychosocial done in 1994. The chiatry. Topics examined in the series included research is done. the UNOS national patient the relationship of organ transplantation "relative" psychosowaiting list surpassed and psychiatric aspects of specific organs cial contraindications 38,000 in February may be removed com1995. 14 An article in and candidates, neuropsychiatric and phar19921~ stated that the macologic issues. and psychoactive substance pletely. especially if donor shortage crisis abuse. The editors welcome the responses they are shown to had reached "alarmhave little relationand suggestions of interested readers. ing" proportions. The ship to a poor outNovember 1994 UNOS come. data suggest more than 36,000 potential recipiThe origins of organ transplantation used ents are on waiting lists. '6 Thus, with demand "lifeboat" ethics. with an emphasis on a utilitargreatly exceeding supply. the future will depend ian. social worth approach. IS There is no pubboth on increasing the supply of organs or organ lished study on ethical criteria variation among substitutes and resolving the ethical and psy- organ transplant programs. as was done with chosocial concerns in recipient selection. psychosocial criteria. It would be interesting to determine if variability in this area is also correlated with unmet demand. Selection Criteria Different ethical approaches could be used The medical criteria for .acceptance into a to redefine the current recipient pool and the transplantation program vary by solid organ concept of accepted notion of benefit (ANB). type and. to some extent, by center. The only The ANB model uses medical need. the estiAs the technical sophistication of solid organ transplantation advances. treatment regimen noncompliance has become a major cause of late posttransplant mortality and morbidity. 13 Predicting noncompliance by using psychiatric methods has gained increasing importance. In this article, we will assess the progress and recent developments in the ethical and psychosocial criteria of solid organ transplantation. especially as they relate to the definition of the recipient pool.
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mated time to death, and estimated quality of life after transplantation to select potential recipients. Different ethical approaches can expand or contract the recipient pool. Surman and Portillo offer four other ethical approaches: 18 duty-driven, patients' rights, utility-driven, and scientific progress-driven. The debate on which approach to use in transplantation will ultimately not only involve the medical profession, but also policymakers, patients and their families, business, and the courts. The decisions will directly affect the size of the recipient pool and the rigidity of the selection criteria. As managed care controls larger portions of the patient population, the utility-driven cost-benefit approach may gain popularity. FUTURE USE OF PSYCHOSOCIAL CRITERIA FOR SELECTION While the protocols for selection for transplant on psychosocial grounds differ significantly among centers and organ type, in the future it is likely that these criteria will converge, especially if criteria become based on carefully collected outcome data. The development and use of standardized evaluation instruments and the creation of a national database would accelerate this process. The first step of this process has started with the development of several standardized instruments. Psychosocial Assessment of Candidates for Transplantation (PACn I9 was the first transplantation evaluation instrument, published in 1989. The Psychosocial Levels System 20 was published in 1991, and a refinement of this scale, the Transplant Evaluation Rating Scale (TERS),21 has shown significant correlation with outcome variables in one study. The next step is to develop multisite collaborations by using a standardized evaluation instrument and a set of standardized outcome measures. OUTCOME AND COMPLIANCE Since duration of life following transplantation has improved significantly, research has shifted to quality-of-life issues. This follows from the VOLUME 36. NUMBER 5. SEPTEMBER - OCTOBER 1995
ANB approach, which uses duration and quality of life to determine benefit. The field of renal transplantation leads this area of research, with three published studies that have compared quality of life in transplantation patients and dialysis patients. 22 - 24 Identifying meaningful and relevant facets of life quality will constitute a major task for clinicians involved in the evaluation and treatment of patients undergoing organ transplantation. 25 One recent study has identified improved cognition as a significant factor in liver transplantation patients' quality of Iife. 26 This work will expand to the point that each organ-specific field will have a list of the critical quality-of-life variables in their patient populations. Future research will more clearly define the relationship between quality of life and compliance. Although some very compliant patients do not experience a good outcome or quality of life and some poorly compliant patients have good outcomes, nonetheless, clinicians both experientially and intuitively recognize that compliance is a critically important factor for good outcome. In fact, most psychosocial research of the past has been done because of a need to identify those candidates who will comply with the medical regimen. 21-3o Expanding the scope of this future research may include correlating levels of compliance and specific quality-of-life variables. The subjective aspects of quality-of-life measurement will be emphasized more in the future. 3o Previous psychosocial research has attempted to be "objective" by emphasizing such factors as return to work, income, marital status, and functional disability.31 At the subjective level, the value of life (whether encumbered with medical illness or not), as evaluated by individual patients, is the most important. J2 Some believe that the value of a transplant lies in eliminating the dysphoria caused by ill health and organ failure. IMPROVEMENTS IN PREOPERATIVE ASSESSMENT Of necessity, preoperative assessment will be comprehensive and extensive in the future as 431
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patients await their organ for longer time periods. Occasionally. this may work to the benefit of the patient. For example. the patient who presents with depression may be treated successfully with medications and psychotherapy during the wait. 33 However. the negative side is the question of how severe the survival rates will be affected by such long delays in obtaining a suitable organ. Approximately 20% of patients awaiting cardiac transplantation died in 1989. 4 Future psychosocial assessments will be better correlated with medical and ethical criteria. because all three are closely linked and evolve in concert during the process. The development of evaluation instruments (e.g.• the TERS)21 that are correlated with outcome will facilitate the development of specific risk factor evaluation as a component of the psychosocial assessment. Given the uncertainty and the fluctuation of conditions while awaiting this scarce resource. in the future the stress level of patients. families. and the medical staff will clearly not diminish.1.33-39 CHANGES IN AlTITUDES ABOUT CONTRAINDICATIONS TO TRANSPLANTATION The absolute contraindications to transplantation include active infection. malignancy. and end-stage failure of another vital organ. 40 Relative contraindications include age greater than 65. recurrent disease. diabetes. noncompliance. psychosis. chemical abuse. and inadequate social support. 40 These lists change often and will continue to evolve in the future as more clinical data are acquired. An example is the University of Pittsburgh's criteria for liver transplantation in AIDS patients. 41 One trend is that of greater flexibility in defining a contraindication. Movement can be in either direction. in that what is relative now may become absolute with more experience. Conversely. it is likely that clinicians will become less rigid about absolute contraindications. especially for the organs with the least unmet demand. 42 The greater number of relative contraindications can be attributed to a smaller 432
database concerning psychosocial influences on medical outcomes. Psychosocial factors will take on greater significance in the future. especially as attention to the subjective status of patients increases. 43 However, a harsher view of the future in which demand even more significantly outstrips supply is that of a time in which only rigidly defined medical criteria will be used. This presents an ethical dilemma. because many conscientious clinicians believe that in periods of donor scarcity. even greater attention should be given to psychosocial factors. particularly the subjective aspects involved in the decision making. The relative psychosocial contraindications may be removed completely if they are not predictors of poor outcomes. For example. it has been reported from several centers that chemically dependent patients who have periods of abstinence may not only survive liver transplants. but also often function well psychosocially.12.~9 The question then becomes whether patients who are chemically dependent should receive liver transplants at the same frequency as other patients. Other patients with psychiatric diagnoses have been transplanted with favorable results. An example of a relative contraindication that may become more rigid is the presence of personality disorder. The postoperative outcome of patients with personality disorders will be scrutinized and evaluated more carefully in the future. because these disorders may be more persistent and pervasive modifiers of outcome and subsequent quality of life than the more successfully treatable Axis I disorders. PSYCHIATRIC ASSESSMENT IN THE FUTURE Psychiatric assessment in the future will cover as exhaustively as possible all relevant past and present clinical factors. More refined assessments of personality by DSM-IV; by biological markers; and by careful psychometric evaluations. including the Minnesota Multiphasic Personality Inventory and other personality inventories. will supplement assessment of the PSYCHOSOMATICS
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current illness, past disorders, suicidal potential, previous treatment, previous compliance, chemical dependency, family history, social supports, educational and occupational history, ambivalence about surgery, cognitive functioning, anxiety, and depression. 50 Preoperative assessment will thus provide diagnoses of significant mental illness, including substance abuse and severe personality disorders; include treatment recommendations; establish a baseline mental status exam for future comparison; and give support both to the patient and to the family. The use of standardized mental status examinations with component scores such as the Neurobehavioral Cognitive Status Exam 51 will allow more detailed evaluation and monitoring of cognitive status. The development of evaluation instruments such as the TERS 21 that are correlated with outcome will facilitate the development of focused psychosocial interventions in the transplant waiting period. Preoperative assessment will also provide education about what to expect emotionally during the various stages of transplantation, the possible side effects and interactions of medications, and effective treatments for stress. This is a comprehensive multidisciplinary task. An expanded concept of suitability for transplantation will result in more sophisticated recommendations to surgeons. The hope is that future selections will be more informed by evolving research findings concerning our ability to predict psychosocial outcomes and compliance.4 Fortunately, in the future, more aggressive treatment of psychosis, chemical dependency, and severe depression should result in more patients being suitable for a transplant. Future studies will assess the effects of postoperative stress, complicated medical regimens, and the side effects of immunosuppressive medication (particularly the neurologic side effects)52 and their potential interaction with psychotropic medication. 49 Careful ethical analyses will help determine whether diagnosing a personality disorder, mental retardation, or a variety of other mental disorders represents bias or discrimination. 18 To VOLUME 36. NUMBER 5 • SEPTEMBER - OCTOBER 1995
the extent that clinicians are advocates for their patients, they may underdiagnose mental illness. To the extent that they perceive a lack of social worth in a patient, countertransference issues may accentuate psychiatric diagnoses. IMPROVEMENT OF POSTOPERATIVE OUTCOMES OF PATIENTS WITH PREOPERATIVE PSYCHIATRIC DISORDERS In the future, data will accumulate concerning the postoperative outcome of patients with psychiatric disorders. A study that followed 70 cardiac transplant patients reported that 14 of the 19 patients recommended with "reservations about suitability" developed postoperative medical or psychiatric complications. 25 While this study demonstrated a significant relationship between preoperative psychiatric disorder and postoperative complications, future studies with larger numbers of patients may reveal different relationships. In another related study, only 4 of 17 patients with preoperative psychiatric disorders who received transplants had significant postoperative noncompliance. 53 This suggests that many such patients may have a potentially successful outcome. The study also strengthens the recommendations of psychiatric treatment for the noncompliant or psychiatrically diagnosed patient rather than automatic denial of transplantation.· Reviews of organ transplantation psychiatry conclude that the basic tasks for the future are improvement of patient selection, prediction of noncompliance, and assessment of posttransplantation rehabilitation. '3 .48 These concerns will be addressed by well-designed clinical investigations in the future. Previous studies have correlated the various stages of the heart transplant procedure with specific psychiatric disorders for those stages. I ,54 This form of clinical thinking can prepare treatment teams for, as examples, treating anxiety in patients awaiting transplant, or managing delirium postoperatively. Closer relationships between psychosocial variable and medical outcomes will be addressed by future 433
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research. Not only will more studies be done with alcoholic cirrhotic patients who receive a liver. but several-year follow-up studies will define their long-term status compared with other patients with different diagnoses leading to hepatic failure. 48 An example of this type of work is the poor prognosis of liver transplants in Asians with hepatitis B. H This knowledge will enlighten the ethical debate about who should be prioritized to receive a liver and whether patients with a history of substance abuse or a specific racial and infectious status should be excluded. Some standardization of the length of abstinence will likely be obtained between transplant centers in the future. Perhaps rather than specific Axis II disorders. certain personality characteristics that cross diagnostic entities such as hostility. extreme dependency. and persistent demands for attention may be found in future clinical studies to be detrimental to transplantation outcome. Behavioral traits. rather than specific Axis II disorders. may be more clinically relevant. Optimally. we can predict that surgeons and internists will see the importance of preoperative psychiatric evaluation. particularly that which leads to enhanced survival rates and enhanced quality of Iife. 56 IMPROVED QUALITY OF LIFE Early research in transplantation focused on issues of survival such as infection. immunosuppression. and rejection. As transplantation surgery has advanced. more recent studies have shifted to include quality-of-life variables. 57-58 The emotional. social. familial. and work adjustments following a transplant have taken on increasing importance. Defining quality of life precisely remains an elusive task. Numerous measures have been proposed and may be categorized into a psychometric approach and a decision theory approach. 59 The first includes separate measures of psychopathology, such as anxiety. depression. and cognitive dysfunction. The psychometric approach is highly focused and may yield a biased perspective. Decision theory is another way to look at 434
quality of life. The Quality of Well-Being Scale. which developed based on the Rand Corporation research. is an example of this method. 58 It yields quality-adjusted life years. derived from comprehensive data. by multiplying the number of years an individual lived in a given condition by the overall total quality-of-Iife score for that period. Recent advances in decision theory postulate that not all factors in a major decision such as whether to have a transplant are of equal weight for all persons. 60 One year in a wheelchair with frequent visits to a hospital may be very desirable for a 65-year-old grandmother. but less desirable for the 45-year-old physician. The variety of expected utility theory proposes a model that includes both survival duration and quality of life. It emphasizes the subjective value ofthe combination of duration and quality of life that could result from the choice. Thus. expected utility theory advocates systematic identification of subjective choices. This personal "existential" emphasis in research will be increased in the future. Many investigators using the psychometric approach have shown that a complicated medical course after surgery profoundly affects quality of life. 61 -64 Subjective effects from immunosuppressive drugs. rejection episodes. infections. and rehospitalizations are primary determinants of quality of life for many patients. However. it is often observed that many patients can tolerate these events with relative maintenance of quality of life. For some. changes in body image. sexual functioning. and finances may be more important than the previously mentioned concerns. 57 Careful identification of the relevant "objective" life events and the subjective appraisal of those events for each patient will be important in the future for both clinical and research endeavors. FUTURE RESEARCH Although the person's personal sense of outcome is critical. group comparison data remains important. This poses difficulties because of appropriate ethical constraints on obtaining control group comparisons. as there can be no PSYCHOSOMATICS
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randomly assigned groups for this critical procedure. Within-subject designs offer an infrequently used alternative. In the future. clinicians will use more sophisticated quality-of-life measures that combine subjective and objective measures in larger. widely selected samples of patients. In addition. quality-of-life research will address the special needs of pediatric transplant recipients. especially the effect of transplantation on development. 65 Quality-of-life research will also expand to measure the effects of transplantation on family members. 4.65 A broader range of cognitive assessments preoperatively and postoperatively will be used instead of simple screening instruments. 58•60 Physical measures such as EEGs may be included in cognitive assessment. The PACT I9 criteria and National Heart Transplantation Study selection criteria will be modified as we come to understand their interrelationship. Each patient's outcome is influenced by different variables. Some persons require less intensive relationships and social support than others. While we will strive for objective instruments. those instruments that incorporate subjectivity will also be developed. The reliability data published on the PACT suggests high agreement on the measure of psychological health. with lowest agreement on substance abuse. 19 The most important question may be how these dimensions are related to compliance. Simplification could be possible if several dimensions are highly correlated with compliance. Deeper understanding of the causes and definition of compliance will. in the next decade. reduce the need for some psychosocial and cognitive research. A few candidates may be prevented from obtaining a transplant who would be compliant even in the face of their diagnosed psychopathology. Future studies should consider that painful likelihood. Consideration of the amount of cognitive function necessary for compliance is currently a matter of clinical judgment. Increasingly. the moderately mentally retarded will be transplanted as future research supports their enjoyment of satisfactory quality of life. 4 • 18 Also. VOLUME 36. NUMBER 5 • SEPTEMBER - OCTOBER 1995
those patients with more adaptive personality styles will be more favorably considered for a transplant. 25.63-65 Thus. the surgeon who chooses to transplant an individual will consider not only physiology but also compliance and quality of life as well. It may be discovered that personality and cognition have an enormous impact on compliance and quality of life. Discrimination will be lessened in the future because of ethical application of research findings. In a legal sense. avoiding violation of the Rehabilitation Act of 1973. which prohibits discrimination against persons with disabilities. will extend to the mentally ill. the mentally retarded. and the physically disabled. The question of who can donate a precious organ will be clarified. We will have data to distinguish the patient who will care for the organ optimally and have the best chance of obtaining the maximum in duration and life quality from the patient who would squander a scarce resource. However. economics in the form of type of medical coverage will determine to some extent who receives an organ. The first come. firstserved method will not. however. be viewed as entirely appropriate. Nor will the situation in a region that has more donors and thus more transplantations necessarily mean that unequal access is justified. Ideally. future studies will integrate biomedical findings. psychosocial factors. and ethical analyses in the selection of candidates for organ transplantation. 64 .6H8 The hope for synthesis is that psychosocial research that addresses the relevant medical and ethical issues will provide the best opportunity for harmonizing the different concerns.
References I. Mayo Clinic: Cardiac transplantation. Mayo Clinical
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55. Ornery A. Jurim Oded. Busullil RW: Transplanting Asian patients with hepatitis B: should poor outcomes innuence decision to proceed? UNOS Update 1994; 10:11 56. Freeman AM. WallS D. Karp R: Evaluation of cardiac transplant candidates: preliminary observations. Psychosomatics 1984; 25: 197-207 57. Jones BM. Chang VP, Esmore D. et al: Psychological adjustment after cardiac transplantation. Med J Aust 1988; 149:116--122 58. Bush JW: General health policy model/quality of wellbeing (QWB) scale, in Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies. edited by Wenger WK. Malison ME. Furberg CD. et al. New York. Le Jacq Publishing. 1985, pp 287-297 59. Kaplan RM: Health-related quality of life in cardiovascular disease. J Consult Clin Psychol 1988; 56:382-392 60. Miyamoto JM. Eraker SA: A multiplicative model ofthe utility of survival duration and health quality. J Exp Psychol Gen 1988; 117:3-20 61. O'Brien VS: Psychological and social aspects of hean transplantation. Hean Transplantation 1985; 4:229-231 62. McAleer MJ, Copeland J. Fuller J. et al: Psychological aspects of hean transplantation. Hean Transplantation 1985; 4:232-233 63. Craven J. Bright J, Lougheed DC: Psychiatric. psychosocial and rehabilitative aspects of lung transplant. in Pulmonary Considerations in Transplantation. edited by Mauer J. Grossman R. Philadelphia. PA. WB Saunders. 1990 64. Craven J. The Toronto Lung Transplant Group: PostOPerative organic mental syndromes in lung transplant recipients. J Hean Transplantation 1990; 9: 129-132 65. Stuber ML: Psychiatric aspects of organ transplantation in children and adolescents. Psychosomatics 1993; 34:379-387 66. Mai FW. McKenzie FN. Kostuk WJ: Liaison psychiatry in hean transplant unit. Psychosom Med 1984; 46:80-8 I 67. Jonsen AR: Ethical issues in organ transplantation. in Medical Ethics, edited by Veatch RM. Boston. MA. Jones and Banlell. 1989 68. WOlcoll DL: Psychiatry's role in the second gift of life. Psychosomatics 1990; 31 :91-97
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