A missing link: rehabilitation counseling for persons with cancer.

Estimate of relative five-year survival for persons diagnosed with cancer in 1990 is at fifty percent (American Cancer Society, 1990). Despite these encouraging statistics, job discrimination and associated employment problems continue to plague cancer survivors. The purpose of this paper is to provide a review of the literature and recommend the inclusion of rehabilitation counselors as an integral part of the multidisciplinary oncology team. A rationale for linking hospital and community based support services is presented.

Vocational rehabilitation has been willing to address the most pressing needs of people with disabilities in our society. Needs addressed have been as diverse as severe mental retardation, traumatic brain injury, and other developmental disabilities such as cerebral palsy. However, one disability group that apparently has been neglected in the rehabilitation process has been individuals with cancer (Goldberg & Habeck, 1982). Cancer has been designated by the Vocational Rehabilitation Act of 1973 as a disease resulting in severe disability requiring priority services. However, despite this legislative mandate, Goldberg and Habeck found that persons with cancer accounted for only 0.6% of the total successful vocational rehabilitation closures in 1979.

Cancer is a complex group of debilitating diseases resulting from the uncontrolled growth of abnormal cells (American Cancer Society, 1990). Cancer cells may originate in any organ system of the body. The presentation and course of the disease varies with diagnosis of cell type and response to the disease is highly individual. Despite the apparent extreme consequences of cancer, estimates of the relative five-year survival in the U.S. for all types of cancer will be approximately 50% in 1990. That means over 500,000 persons could potentially benefit from vocational rehabilitation services in one year. Unfortunately, few people with cancer have received these services (Goldberg & Habeck, 1982).

It is unclear why people with cancer have not received the benefit of vocational rehabilitation at the same rate experienced by other disability groups. However, three explanations have been postulated. First, it may be that many vocational rehabilitation counselors believe the prognosis for people with cancer is so poor that the time and expense involved in providing services precludes the benefits to be gained (Conti, 1990).

Second, Watson (1983) suggested that job discrimination may exist for those people with cancer who wish to attain or maintain employment after being diagnosed. Employers may not wish to hire an individual on the assumption that the employee will miss large periods of work due to illness, or that the employee will die on the job. Clearly if this is the case, successful rehabilitation will require extreme effort on the part of the counselor to identify employers willing to hire a person with a diagnosis of cancer. These efforts may not appear cost effective. Indeed, this attitude may be reinforced by health providers (e.g., physicians and nurses) who view cancer as a terminal disease, resulting in a low inclusion rate into the rehabilitation system for people with cancer. The medical model of providing health services typically does not take a proactive concern for the employment of those individuals receiving treatment. Discharge planning and case management are seldom utilized to address employment as a viable outcome for the person with cancer leaving the hospital. Furthermore, families and friends, sources for many vocational rehabilitation referrals (Keitel, Cramer, & Zevon, 1990) may be cued by health providers and view cancer as a terminal disease. Thus, a subtle form of employment discrimination occurs when the person with cancer is seen as an invalid by family, friends, and health providers rather than as a potential contributing member of the work force.

Finally, the person with cancer may experience what Mundy and Moore (1990) identify as "disability syndrome." Disability syndrome refers to injured or ill persons who fail to return to gainful employment when it has been medically determined that it is possible for them to do so. Unemployment for an extended period of time, coupled with the negative attitude by many health providers may exacerbate this condition for persons with cancer.

The paucity of research in oncologic rehabilitative counseling suggests a need to assess the viability of its inclusion in the multidisciplinary medical team. Treatment modalities and technology will only improve the long term quality of life for persons with cancer. It is time to close the gap between the perceptions of cancer and the reality of life for cancer survivors.

The purpose of this paper is to assess the current role of rehabilitation counseling in oncology and suggest methods by which professional rehabilitation counselors may improve the vocational prognosis for persons with cancer. Additionally, a model is proposed for creating a link between hospital and community based services to improve the care of persons with cancer.

Review of the Literature

Mullan (1984) reports that as many as 22% of persons with cancer will experience employment and insurance discrimination on an annual basis. In the assessment of all employment discrimination suits filed since the Vocational Rehabilitation Act of 1973, less than 2% were by persons with cancer. Implications of such findings suggest that there may be a lack of awareness that discrimination is taking place by the cancer survivor. The implied passivity in discrimination awareness may yield a clue to what drives the transformation of patient to survivor.

Job discrimination was studied by Bordieri and Drehmer (1988). They explored selection evaluation of job applicants with a disability. One hundred twenty-five business administration undergraduates reviewed a cover letter and resume of an applicant with a disability. The applicant's impairment was systematically manipulated in the cover letter and attribution of responsibility for the disability and recommendation to hire were measured. In this study there was a recommendation to hire given when applicants were not perceived to be responsible for the cause of disability, except for those applicants with cancer. Although reasons for this discrimination were not identified, difficulty in obtaining health insurance carriers to provide new coverage for persons with cancer may provide a clue.

Heinrich and Schag (1988) assessed the impact of living with cancer by comparing a sample of 25 persons with cancer to a control group of 32 healthy people. One of the most significant findings of the study was related to work status. Only two of the 25 cancer survivors were employed, while 23 of the control group were employed at the time of evaluation. The cancer survivors also reported maintaining adequate levels of exercise and recreation, implying that they were not severely disabled by their disease. Another interesting finding was that there were no statistically significant differences between the groups with respect to how much they understood about the physiology of the disease.

Apparently the persons with cancer did not receive or perhaps retain information regarding the disease process. This suggests the need for educational research to determine how health professionals and rehabilitation counselors may become more effective teachers when informing people with cancer about the disease, and the effect they can expect upon their lives.

Strong (1987) identified goals of oncology rehabilitation according to the stage of disease. The goals were prevention, restoration, support, and palliation (terminal care). Strong suggested that counseling can and should play an active role in all stages of cancer. She made a differentiation between diversional and meaningful activities. Diversional activities were defined as those that divert a person's attention from life and should be avoided, even in the terminal stages of the disease process. Meaningful therapeutic activities were stated as those which maximize the process of living with disease. Meaningful activities focus on engagement in life rather than detachment. Strong emphasized the need for the counselor to be in touch with his or her own attitude toward death and dying. The opportunity to express emotion is critical for the cancer survivor to incorporate a sense of integrity with the counselor.

The development of a network of rehabilitation resources for referral was examined by Polinsky, Ganz, Rofessart-O'Berry, Heinrich, and Schag (1987). These authors believe a comprehensive referral network ensures that consistency and maximum utilization of available resources will occur. Categories of services required by cancer survivors include emotional and life planning needs, as well as health care needs. The person with cancer should have a directory identifying community resources prior to discharge from the hospital. Each community has unique provider resources that clients should be able to recognize and access. The rehabilitation counselor should evaluate providers on a regular basis to assess continuity of quality service. The best method of evaluation includes site visits rather than telephone interviews. Evaluation of services received by clients should also be included in case management of persons with cancer.

Discussion

It appears obvious that case management in oncology could be enhanced significantly by the increased use of rehabilitation counselors as a part of the multidisciplinary team. The prevalence of cancer and the statistics regarding employment discrimination and lack of awareness make this an issue of critical importance in cancer treatment. The total care plan of the person with cancer must include assessment and advocacy of appropriate vocational rehabilitation. Further, emphasis on maximal function must begin at the time of diagnosis and be maintained throughout the life of the cancer survivor.

Additionally, prospective research is needed to provide an understanding of the long term benefit of normalization, including employment. It would appear cancer survivors who remain employed may live longer (Goldberg & Habeck, 1982). The socioeconomic impact of transforming the cancer patient to survivor needs to be studied in an objective fashion. A significant contribution to empowerment of a cancer survivor is to provide immediate emphasis on life issues, including employment. Employers need to be aware that persons with cancer have average turnover and attendance records when compared to non-cancer employees of similar age and job description (Goldberg & Habeck, 1982). Concurrently, rehabilitation counselors and health care providers must update their perception and philosophy of care in the oncologic profession. Perception and philosophy must focus on life issues as long as possible.

Furthermore, the advent of diagnostic related groups (DRG's) as a means of reimbursement for Medicare recipients has resulted in an overall decrease in number of hospitalized days for persons with cancer and other illnesses (American Cancer Society, 1990). The continued emphasis on out-patient treatment reduces the time a person with cancer has to receive hospital based support services. The gap created by early discharge of the person with cancer into the community after initial diagnosis and treatment needs to be recognized and addressed.

Typically, the transition from hospital to community is primarily the responsibility of the discharge planning team. This team generally consists of the client's physician, nurse, and social worker.

The physician's role in the discharge planning process is developing the medical treatment plan that the client will receive after leaving the hospital. This includes determination of what medications the client will need, as well as treatment procedures that the client may need while recuperating at home. Vocational issues are largely ignored at this stage of the discharge planning process unless brought to the physician's attention by the client. Rehabilitation counselors could have a major impact on solving this problem by updating target physicians on what services are available to clients with a particular disability. Additionally, identifying possible benefits of early rehabilitation intervention needs to be emphasized as an important area of further research.

The nurse's role in the discharge planning process is multifaceted. The nursing discharge plan primarily acts to facilitate the medical and social service plan, although creative nurses have the unique ability to coordinate all professional services in the role of client advocate. Nurses study and practice in the realm of life issues. Effective practitioners utilize attending skills and the basic listening sequence (Ivey, 1988) to become a focused client advocate.

Among the many roles of the social service professional is coordinating the medical plan with the client's schedule. Again, the ability to work empathically with clients make this a vitally important link in the transition from hospital to community. Caring, empathetic social workers can be one of the greatest allies of a client and family.

Graduates of rehabilitation counseling programs at the Masters' level would be ideally suited to contract with insurance carriers to be case managers in the community. Such service providers would ensure that clients receive maximum utilization of entitlements, as well as act to assist the client in administrative paperwork. The rehabilitation counseling profession has by its philosophic nature a developmental and advocative body of knowledge well suited for community case management.

Advanced technology and improved methods of treatment make cancer increasingly a disease with potential for long term survival. It is inappropriate to ignore the employment potential of a person with cancer. Rehabilitation counselors have an opportunity to impact a significant number of lives by becoming an integral part of the multidisciplinary oncology team. Improved networking between hospital and community based services needs scrutiny by researchers. The goal is to determine the most effective models of service that will both improve overall health of our society as well as become efficient and cost effective.

References

American Cancer Society. (1990). Cancer Facts and Figures 1990. New York: Author.

Bordieri, J. E., & Drehmer, D. D. (1988). Causal attribution and hiring recommendations for disabled job applicants. Rehabilitation Psychology, 33 (4), 239-247.

Conti, J. V. (1990). Cancer Rehabilitation: Why can't we get out of first gear? Journal of Rehabilitation. 56 (4), 19-22.

Golberg, R.T., & Habeck, R. (1982). Vocational rehabilitation of cancer clients: Review and implications for the future. Rehabilitation Counseling Bulletin, 26 (1), 18-28.

Heinrich, R. L., & Schag, C. C. (1987). The psychosocial impact of cancer: Cancer patients and healthy controls. Journal of Psychosocial Oncology, 5 (3), 75-91.

Ivey, A. E. (1988). Intentional interviewing and counseling: Facilitating client development. Pacific Grove: Brooks/Cole.

Keitel, M. A., Cramer, S. H., & Zevon, M. A. (1990). Spouses of cancer patients: A review of the literature. Journal of Counseling and Development, 69 163-166.

Mullan, F. (1984). Re-entry: The educational needs of the cancer survivor. Health Education Quarterly, 10, 88-94.

Mundy, R. R., & Moore, S. C., & Mundy, G. D. (1991). Early versus delayed rehabilitation intervention on development of disability syndrome. Manuscript submitted for publication.

Polinsky, M. L., Ganz, P.A., Rofessart-O'Berry, J., Heinrich, R. L., & Schag, C. C. (1987). Developing a comprehensive network of rehabilitation resources for referral of cancer patients. Journal of Psychosocial Oncology, 5 (2), 1-10.

Strong, J. (1987). Occupational therapy and cancer rehabilitation. British Journal of Occupational Therapy, 50 (1), 4-6.

Watson, M. (1983). Psychosocial intervention with cancer patients: A review. Psychological Medicine. 13,(4), 839-846.