Employment and the Transplant Patient.

Survival rates after heart, liver, or kidney transplantation are steadily increasing, and the morbidity associated with long term immunosuppressive therapy is slowly being reduced (Cooper & Paris, 1993). As a result, there is increased attention focused on improving the transplant (TX) recipient's quality of life by health care professionals (Jones et al., 1990).

One consistent measure of post-TX quality of life used by patients and staff is whether the patient has returned to competitive employment (Levy et al., 1995; Russell, Beecroft, Ludwin & Churchill, 1992). Not all patients, however, return to the full activity one would expect. Less than 50% of those assessed as medically able to work actually return to successful employment (Adams, Ghent, Grant & Wall, 1995; Jones et al., 1993; Paris et al., 1992).

In the TX literature "successful" is defined as employment which is:

(i) full-time, including homemakers and students but only when they return to their previous pre-TX role, (ii) part-time, or (iii) self-employed. The aim of TX should be to enable each recipient to return to an active lifestyle, and this should include employment in those of an age where this is usual in the population as a whole (Cooper & Paris, 1993). Unfortunately, this goal has not yet been achieved.

There have been only a limited number of studies that have been implemented to enhance post-TX employment. Hence, there is little background information applicable to predicting which patients are more likely to have a successful vocational outcome or the challenges specific to their rehabilitation.

Review of Literature

Economic Issues

Today, there is more discussion than ever before about the need for TX patients to return to competitive employment. The reasons for this are many but include the following: (i) improved medical results with fewer limitations, (ii) greater financial pressures to ration healthcare, and (iii) increased legal options/rights of disabled patients due to the passage of the Americans with Disabilities Act (Paris et al., 1993; Satcher & Hendren, 1992). In addition, both the public and private sectors are questioning whether the benefits warrant the expenditures. In a 1987 UNOS (United Network for Organ Sharing) public opinion survey on heart transplantation, 72% of respondents agreed that a patient's ability to return to work or other regular activity was second in importance only to patient survival (with which 83% of respondents agreed) (Evans & Manninen, 1987). Ultimately, lives have been saved, although the economic price we pay continues to increase (Evans, 1986).

The term "cost/benefit analysis" is becoming a familiar issue in this debate. As early as 1987, Oregon drew national attention when their state Medicaid program stopped funding for solid organ transplants. The legislature believed that the funds spent on TX would save many more lives per dollar spent, if the money was invested in pre-natal maternal care (Golenski, 1990). Although this decision was reversed a few years later, it reflects how economic forces can impact the availability of potential medical funding.

Placing a dollar figure on the costs associated with TX is much easier than placing a dollar figure on the benefits resulting from patients being employed. In fact, at the present time no such data is available. We do know that patients with end stage kidney disease account for 0.35% of the Medicare population but 3.7% of expenditures, and many believe this is indicative of how certain procedures use an excessive "proportion" of health care dollars (Evans, 1990). Previously published return-to-work rates of 45% for heart, 57% for liver, and 41% for kidney TX perhaps gives some credence to the "economic" concern that the cost of TX outweigh the benefits (Adams et al., 1993; Paris et al., 1992; Russell et al., 1992).

Social Issues

Historically (prior to 1990), research studies considered post-TX employment was feasible only for those who could return to a pre-TX job. Multiple barriers were identified that would preclude new post-TX employment, such as (i) changes in priorities whereby patients value family and leisure activities over work, (ii) hiring discrimination based on medical history, (iii) restrictive cost or unavailability of workmen's compensation or medical insurance, (iv) poor local or regional economic conditions, and (v) limited education and/or work skills (Evans, 1986; Harvison et al., 1988; McBride et al., 1988; Meister, McAleer, Meister, Riley & Copeland, 1986; Niset, Cousstry-Degre & Degre, 1988; Samuelsson, Hunt & Schroeder, 1984; Shapiro, 1990; Wallwork & Caine, 1985). As a result, TX programs were liberal in their support of post-TX medical disability and were unlikely to encourage patients to return-to-work.

In a series of studies conducted since 1990, when TX centers began to focus on patient employment, and encouraged the appropriate use of Vocational Rehabilitation (VR) services, results indicated 10% - 15% of the patients were able to secure new employment (Paris et al., 1993; Paris, Tebow, Dahr & Cooper, in press). They also reported a higher rate of patients returning to their previous employment.

The social factors associated with improved employment rates were (i) continued health insurance (either through the patient or his/her spouse), (ii) a willingness to give up disability income, (iii) [is less than] 55 years of age, (iv) white collar work experience ([is greater than] 12 years of education), and (v) pre-TX disability of [is less than] 4 years. In each case, it was necessary to arrange for continued health insurance coverage before a patient would consider VR or attempt to secure new employment.

Psychological Issues

The most difficult aspect of a patient's rehabilitation is the psychological component (Andrews et al., 1992; Shoemaker, Robin & Robin, 1992). Before TX patients will return to former employment or before they can secure new post-TX employment, they must believe they are physically able to work (Grady, Jalowiec, Grusk, White-Williams & Robinson, 1992; Paris et al., in press). Consistently, the patient's perception of physical disability is directly linked to post-TX employment status.

The discrepancy between the 10% of TX patients meeting disability requirements (as determined by physician assessment) and the 40% of patients who perceive they have a work disability is problematic. Whether this reflects a real or imagined incapacity on the part of the TX patient is uncertain. As with other chronic illnesses, TX patients may not be totally disabled but may have specific physical limitations and complaints which preclude only certain types of work (Paris et al., 1992).

Depression, fear, or anxiety may limit the patient's capacity to function optimally in a vocational environment (Tarter, Switala & Van Thiel, 1994). With post-TX depression and anxiety rates reported above 50%, psychological evaluation and treatment should be considered for patients whose health perceptions differ significantly with that of the physician (Maricle et al., 1989).

Another psychological factor that is rarely discussed in the TX literature is the effect of having a pre-TX history of substance abuse. Patients accepted with as little as six months sobriety or abstinence from alcohol or drugs may have a profound impact on a patient's post-TX opportunity to obtain, and more importantly, sustain employment (Gish et al., 1993). It is a recurrent and well-documented theme that vocational instability and unemployment are serious problems among persons who abuse substances (Gardiner, 1978; Waldo & Gardiner, 1984). In the general population they have consistently reported unemployment rates greater than 35% (Renwick & Krywonis, 1992). This number will undoubtedly be higher in a patient population with severe physical complications resulting from end stage cardiac, liver, or kidney disease.

There is evidence to suggest that patients with a history of alcoholism and certain types of drug abuse are likely to have cognitive deficits which result in behavior patterns that serve as an obstacle to maintaining employment or having a stable pre-TX work history (Smith, 1991; Tarter, Moss, Arria & Van Thiel, submitted for publication). However, there are also reports that a prior history of substance abuse has not been associated with limiting a patient's post-TX employment or rehabilitation potential (Berlakovich et al., 1994; Paris, Muchmore, Pribil, Zuhdi & Cooper, 1994). One could only speculate on this discrepancy.

Medical Issues

Clearly, the pre-TX physical status of the patient may influence his post-TX rehabilitation. For example, if a bedridden patient is physically weak at the time of TX, his post-TX physical rehabilitation will be slow, and it is likely that social rehabilitation will be similarly prolonged (Cooper & Paris, 1993). Attention should, therefore, be paid to the pre-TX physical state of the patient. Surprisingly, patient pre-TX inactivity and deconditioning has, in some cases, responded to regularly monitored exercise (to the limit of his/her capacity) from the physical rehabilitation staff (Squires, 1990).

Once TX has taken place and the organ is functioning satisfactorily, patients should be put through a rapidly progressive physical rehabilitation program (Kempeneers et al., 1988; Noakes & Kempeneers, 1990). A patient's progress will be limited largely by his peripheral muscle strength, and if this is depleted from pre-transplant inactivity, then rehabilitation may be prolonged (Nicholas, Oleske, Robinson, Switala & Tarter, 1994). For liver TX patients, a persisting encephalopathy, even of a low-grade sub-clinical severity, may impair concentration and psychomotor capacity which further delays rehabilitation (Tarter, Edwards & Van Thiel, 1986).

At the three TX centers represented by the authors of this paper, in the absence of any major complications, appropriate patients are referred for VR assessment and training 2-3 months after TX. It is recommended that training and/or employment begin part-time 2-4 hours a day for 2-4 weeks, and depending on tolerance, it should then be slowly increased to full time over the next 4-6 weeks. By 3-4 months the typical TX patient should be cleared to work full-time. The type of employment will have some influence over this time frame.

Employment limitations are considered general in terms of the avoidance of the extremes of weather and physical exertion (especially if the patient is [is greater than] 50 years old), exposure to physical irritants, potential for recurrent infections (i.e. public information desks, cafeterias, bars, etc.), and/or industrial pollution or dust. Post-TX medication side effects may also pose some employment limitations. Jones et al. (1990) found that patients on a steroid-free immunosuppressive regimen were more likely to be employed, presumably because they were in better physical condition. Tarter et al. (1994) reported that steroids, even in small doses, can exert subtle but detectable effects on cognitive functioning. Furthermore, physical appearance, most notably cushingoid features, obesity, acne, and hair loss may exacerbate negative self-appraisal, thereby contributing to social withdrawal.

For those patients who are well recovered, the limitations are few and they should be able to resume fairly normal daily activities. However, this positive outcome is often dependent on regular exercise, medication and dietary compliance, and an absence of psychological problems (Kavanagh, 1992). Contrary to the fear of most employers, many of the numerous follow-up exams could be done within the work or training program with minimal disruption. The frequency of exams could be reduced for those patients who are able to follow more detailed instructions and have a home town physician who could assume part of the follow-up responsibility.

Discussion

Prior to receiving a TX, patients often experience long periods of illness requiring multiple medical interventions. During this process patients often come to regard themselves as ill, weak, and incapable of being productive. As TX recipients, most feel fortunate to have their lives extended, yet they realize their longevity will be reduced when compared to the general population. In deciding how to live a satisfying post-TX life, many factors, often conflicting, enter their minds.

They may have undergone a personal values restructuring regarding the importance of work in the face of having survived a life-threatening illness. Depression, fear, or anxiety subsequent to the TX mitigates against the capacity to function optimally in vocational, as well as social environments. Depending on the individual patient's medical status, it may not be possible for him/her to physically perform tasks that were previously possible. Medication side effects and the fear of infection and/or rejection will also make some patients hesitant to re-enter the workforce.

Employment can offer structure and meaningful activity. Work can provide a sense of purpose that contributes to positive self-esteem, thus enhancing the patient's quality of life. Nevertheless, unemployed TX recipients who are experiencing relative satisfaction in their daily lifestyle and activity, along with sufficient financial security, will likely be reluctant to attempt employment and disrupt this homeostasis. Avoiding change is certainly the path of least risk. Boredom, restlessness, or a need for additional income may help break this barrier and provide the motivation to consider employment.

Health insurance remains a concern for the TX patient whose coverage is predicated on his/her disability. Even though returning to work may increase income when compared to the amount the person was receiving from medical disability payments, private health insurance often remains difficult, if not impossible, to obtain or afford. Certainly this is a major stumbling block to securing new employment and requires clarification by the TX social work staff.

Obviously, there are many barriers to post-TX employment. In general, those patients (i) who maintain health insurance, (ii) who are [is less than] 55 years of age, (iii) who believe they are physically able to work, (iv) who have a history of white collar employment, and (v) who have at least a high school diploma are likely to need only limited VR services. The patients in need of significant VR services are those with (i) a limited education, (ii) an absence of work skills, or (iii) a health perception that differs dramatically from the medical team, and/or (iv) the view that they are physically unable to work.

Although some state VR policies may limit providing services to patients pre-TX, an early referral to the VR counselor should be considered. A few patients who are medically stable enough to stay out of the hospital may benefit from counseling services. Social workers often sponsor support groups or arrange for individual mentors who also serve as a source of motivation and information. For most patients, however, a full assessment should not be attempted until the patient is medically stable (2-3 months post-TX).

It is important that all members of the TX team communicate that their expectation for the TX recipient is that he will likely become abled, rather than disabled, within a few months following TX. If this message is conveyed from the time of being accepted as a candidate, the patient and TX team can work together with the VR counselor to set realistic goals and develop a plan of action consistent with this expectation. In carefully selected patients, these interventions help speed a patient's re-entry into the post-TX job market (Paris et al., in press). However, the point to be made from this discussion is that disturbances in vocational performance, a common post-TX sequela, has a multifactorial basis and requires an equally creative and flexible management approach to increase the patient's chances of success.

Author's Note: This project was funded by a grant from the Bennett Research Fund, Integris Baptist Medical Center, (William Orr, Ph.D., President and Chief Operating Officer, Thomas N. Lynn Institute for Health Care Research). We thank Jana Lindley and Michelle Malone for their assistance in the preparation of this manuscript.

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W. Paris
G. Calhoun-Wilson
B. Slentz
Integris Oklahoma Transplantation Institute

S. Tebow
Oklahoma Department of Rehabilitation Services

J. Hart
St. Vincent Hospitals and Health Services

J. Harrison
Fairfax Hospital

Wayne Paris, MSW, Integris Oklahoma Transplantation Institute, Integris Baptist Medical Center, 3300 N.W. Expressway, Oklahoma City, OK 73112-4481.3