Cancer rehabilitation: why can't we get out of first gear?

Cancer Rehabilitation: Why Can't We Get Out of First Gear?

Because of advances in the diagnosis and treatment of some cancers, there are now more than five million cancer survivors (American Cancer Society, 1987). Some of these survivors are permanently and totally disabled. Others have some physical limitations, but with assistance they could have an improved quality of life. Still others can be helped through vocational rehabilitation services to enter or re-enter the job market.

The State/Federal Vocational Rehabilitation program has been extending its services to persons with a history of cancer for more than twenty years. In 1978 the Independent Living Program became a new potential resource. Relatively few cancer patients and survivors are served by these programs, however. It is not clear why this is the case.

Since 1965, the Rehabilitation Services Administration has permitted such persons to be accepted for service (U.S. Dept. of Education, 1980). Former Commissioner Robert R. Humphreys was called upon to clarify the issue 15 years later.

It is RSA's position that persons disabled by cancer may be eligible for vocational rehabilitation services and that such services should be provided if the individual wants to work and can work even if for a limited period of time. The services should be individually tailored according to the needs of the individual and the anticipated work life.

Some cancers like the lymphomas and Hodgkins Diseases are similar in their outlook to multiple sclerosis. Others require extensive physical restoration services. In general, it is appropriate for vocational rehabilitation to provide job-related follow-up restorative services as needed, after primary surgical/x-ray and/or chemotherapeutic care has been provided.

Persons who are handicapped by cancer present special problems of eligibility. But over the years, a few principles have been established:

* Persons handicapped by cancer usually have a potential for work for a significant period of time.

* The potential for work is dependent on a number of variables, notably the natural history of the cancer involved, the individualized manner in which the specific cancer affects the patient and the personal characteristics and opportunities of the patient. [Emphasis in original]

Level of VR Series

Despite clarification and reassurance of eligibility by Federal adminsitrators, State employed rehabilitation counselors have served far fewer persons with cancer than might be expected (U.S. Dept. of Education, 1987). Between 1971 and 1979, the number of persons with malignancies who were rehabilitated by the State/Federal Vocational Rehabilitation system increased from 1,000 to 1,556. The gain in persons rehabilitated is poor, considering that more than a quarter million disabled people were closed as rehabilitated in each of those years.

When Taylor (1984) examined closure rates, she found that successful closures for persons with cancer never exceeded 0.54%. Following up on Taylor's work, it became apparent that more recent statistics are no more encouraging. In 1985, 339,688 disabled people in the VR program were closed following rehabilitation services. Of those, 218,039 were closed as successes (i.e. rehabilitations), and 121,659 persons were not rehabilitated. Of those identified as persons with cancer, 1,033 were successfully rehabilitated, and 559 were not (U.S. Dept. of Education, 1987). Simply stated, these figures indicate that one half of one percent (0.50%) of all persons rehabilitated by the vocational rehabilitation program in 1985 were clients with a cancer diagnosis.

When reviewing services in general, rather than rehabilitations alone, it is clear that in a single recent year only 1,633 persons with cancer progressed through the VR system even as far as the planning stage (U.S. Dept. of Education, 1987). In that same year, according to the American Cancer Society, about 900,000 new cases of cancer were diagnosed (American Cancer Society, 1987). Although survival rate estimates vary widely, a safe prediction, using the most conservative data, is that between 40-50 percent of those diagnosed will survive at least five years (>385,000).

Not all cancer survivors need, desire, or qualify for VR services, of course, but those feasible for rehabilitation, and wanting VR services, are surely greater in number than the few the system has served. Analysis of the above incidence data reveals that .0018% of newly diagnosed cancer patients progressed to a planning stage in the VR system. If one were to consider the larger universe of cancer survivors, rather than just newly diagnosed cases, the percentage served by VR drops to an even smaller figure.

Exploring Possible Reasons for

Underrepresentation

Although it is clear that the pool of potential workers with a cancer history has not been fully tapped by VR, the reasons for that remain somewhat of a puzzle. A "bad economy" or "restrictive program regulations" are commonly used excuses for not adequately serving persons with malignancies (McAleer, 1975).

Contributing factors to underrepresentation may include hopelessness on the part of persons with cancer, and prejudice or a lack of information on the part of counselors and state administrators (Conti, 1981).

Brickner (1978) suggests three reasons why cancer patients are rarely involved in vocational rehabilitation:

* The lack of up-to-date information on treatment and prognosis of the disease on the part of vocational rehabilitation professionals;

* The lack of a comprehensive educational program on the potentials of persons whose cancer has been cured or contained; and

* The lack of consideration of rehabilitative goals and vocational planning early in the treatment.

Researchers have also considered that cost might be a factor. However, financial constraints probably can be discarded as a valid reason since it has been shown that the cost of closed cancer cases is the lowest per case of all compred disabilities (including tuberculosis, diabetes, mental disorders, heart disease, and orthopedic problems). Several studies have confirmed that money is not the reason for underrepresentation. One such study found that the $370 average cost spent on a cancer client was about one third of that spent on a client with a coronary disorder. Although similar-benefit funding sources are available, they are not being tapped (Taylor, 1984).

The medical sector's failure to refer for rehabilitation services has been suggested as a reason so few persons with cancer appear on vocational rehabilitation case lists. It has also been pointed out that statistics may be spuriously low due to methods of coding, e.g., when amputation, colostomy or laryngectomy are selected as codes rather than the underlying cancer.

Perhaps cancer patients are not being made aware of the rehabilitation program. The Rehabilitation Act has had little impact on the rehabilitation of cancer patients, according to a Mayo Clinic study. Employers, labor unions, and the general public generally do not recognize that cancer survivors are able to return to work and that they are excellent candidates for vocational rehabilitation counseling. Rather than emphasizing the reality that many persons who are either cured or in a stage of cancer containment will live long, productive lives, public education programs have instead emphasized information about early warning signs of cancer, benefits of early treatment, and preventive health measures. Information on cancer and employment is particularly needed by three groups: industrial physicians, recovered cancer patients who lack adequate job skills and counselors (Brickner, 1978).

The primary reason for the underrepresentation of cancer survivors in Vocational Rehabilitation, however, seems to result from the bias of the rehabilitation counselor (Taylor, 1984). Counselors' attitudes have been demonstrated to be a major obstacle to those persons receiving vocational rehabilitation services. Cancer has been shown to pose the greatest personal threat to counselors when compared with other disabilities, such as renal failure, paraplegia, and heart disease (Pinkerton and Nelson, 1978). The counselor apparently distances himself as much as possible from the cancer client, threatened by some of the same fears as those experienced by the individual with cancer.

VR Sucess Rate Compares Favorably with

Other Disabled

The phychological, social, and vocational problems of the person with a cancer diagnosis are not so different from those of other disabled persons. Some researchers report the primary difference as the ever-present fear that the disease will progress or recur (Healey and Zislis, 1981). But fear of progression of illness is shared by many other disability groups including people with multiple sclerosis, and some forms of visual impairment, such as retinitis pigmentosa and diabetic retinopathy. Recurrence of illness also is not limited to cancer clients; persons with psychiatric disabilities, for example, have always expressed such a fear, often on sound grounds. The physical restoration problems of cancer clients require therapeutic measures similar to those provided other physically limited individuals.

The most recent national statistics available on rehabilitation success (U.S. Dept. of Education, 1987), reveal that cancer patients succeed in their rehabilitation programs about as often as other disabled persons. Since cancer is a severe disability, it is more proper to compare the rehabilitation rate with that of other severely disabled clients. In doing so, we find that the success rate for cancer clients is slightly higher. We may therefore say that cancer survivors, when given the opportunity to participate in a rehabilitation program, do at least as well, or even slightly better, than others with severe disabilities.

Cancer and Independent Living

In recent years the rehabilitation field has broadened the constituency to include newly disabled persons, and people who are often more severely disabled. Traditional rehabilitation programs that are vocationally oriented have been supplemented by programs with a different goal--stressing independent living for persons with handicapping conditions.

Independent living centers (ILCs) have been created throughout the country to help disabled persons move toward this goal. The basic requirement at ILCs is that the person be severely handicapped by a physical or mental disability and in need of one or more services offered by the center so they can live more independently or can secure and keep jobs. Although many persons with cancer qualify under this definition, relatively few take advantage of this resource.

The families of cancer patients often do not know where to go for advice, or how to obtain medical equipment, get legal counseling, or arrange for transportation. However, the recovering cancer patient may find help at ILC counseling groups whose members are learning to live with physical limitations. ILC services designed to help those who are trying to re-enter the labor market may also prove useful to cancer survivors (Conti, 1982).

Counselor Planning and Coordination of

Special Importance

Vocational planning for the cancer client requires that the counselor consider many factors, including the part(s) of the body involved, functional limitations, success in physical restoration, motivation, family support and psychological adjustment. Employer attitudes and the client's education and work history will all have a bearing on the formulation of a vocational plan.

The goals of successful employment for the cancer client requires the cooperation and coordination of many professionals. After the client's rehabilitation potential has been established, specific vocational options can be considered. Physical and environmental job demands and the client's education and work history, as well as the status of his disease, will all enter into the evaluation. The length of training programs may be affected by morbidity and life-expectancy prognosis. There are many valuable services that rehabilitation counselors can offer, including vocational counseling, psychological counseling, crisis intervention counseling (especially at the time of diagnosis), and advice about prostheses in the cases of post-mastectomy and amputation.

The role of the rehabilitation counselor as a member of the professional cancer rehabilitation team needs to be emphasized, especially to physicians who may not be aware of, or who harbor misconceptions or prejudices about the training and competencies of the rehabilitation counseling profession. Perhaps personal contact with competent counseling personnel is the most effective way of educating and changing misconceptions among colleagues in health, education, mental health and other related fields. It might be worthwhile for VR state directors and office managers to consider sending some knowledgeable, personable, and articulate counselors to staff meetings of local American Cancer Society (ACS) chapters so they can make brief presentations about how rehabilitation counselors are trained and what their roles are. Many ACS chapters would likely welcome such in-service training because it would give many nursing, administrative, and patient services personnel the opportunity to hear for the first time about the contributions rehabilitation counselors can make.

The field of rehabilitation counseling is little known even within the narrow area of cancer rehabilitation. A few years ago the Journal of Rehabilitation reported on an exemplary program in cancer rehabilitation at New York's Memorial Sloan-Kettering Hospital (McLaughlin, 1984). This writer was surprised to discover that no rehabilitation counselors were reported on the comprehensive staff. Funded by the National Cancer Institute, the project was charged with developing a model system of rehabilitation services for patients.

The Journal article painstakingly described staff roles, especially in the fields of medicine, social work, and nutrition, but not a word is mentioned about rehabilitation counseling. This is especially surprising in a metropolitan area that trains graduate level rehabilitation counselors in four universities.

A few efforts to call attention to the potential contributions of rehabilitation counselors to clients having cancer histories have been made. In the state of Virginia, an excellent Counselor Cancer Handbook has been developed (Franco, 1978). Commissioner Altamont Dickerson of the Virginia Dept. of Rehabilitation Services opens the handbook with an upbeat and encouraging open letter in which rehabilitation counselors are urged to increase outreach to those persons with a diagnosis of cancer. The handbook has been revised from time to time; updated resource listings are prepared by students and mailed to holders of the book. Comparable resources are needed before counselors will begin to feel comfortable working with cancer patients and survivors.

State agency administrators and rehabilitation counselors should be encouraged to learn more about this specialty area. No national conference on cancer rehabilitation has been held. No priority attention for grants aimed at rehabilitating severely disabled individuals with a history of cancer has been extended. There is no cooperative agreement between RSA and the American Cancer Society, perhaps the oldest and largest organization representing disabled consumer interests (established 1913). Steps should be taken to address each of these deficiencies.

Summary and Conclusions

The number of people with a cancer history is substantial, however, those who are served by the rehabilitation system are very few. We are at virtually the same level of service for this population as we were fifteen years ago. Counselors may not be aware of the increasingly hopeful survival statistics for cancer, which is now between 40-50%, five years after diagnosis. Rehabilitation agencies should make a concerted effort to reach out to this large, underserved population. VR experience with the small number of persons with cancer who have gone through the system has been positive, and costs for cancer cases are lower than for other chronic disabilities.

Some state agency personnel have complained in recent years about the lack of good candidates for VR services. An aggressive outreach effort aimed at cancer survivors could very well yield a new group of highly motivated, severely disabled potential clients. VR and IL communication with the American Cancer Society at national, state and local levels would be a good way to begin, with possible later movement toward cooperative working agreements if early contacts are promising. Training of rehabilitation personnel of the special characteristics and needs of cancer clients can and should be done in every state.

Fifteen years have passed since the Rehabilitation Act of 1973 targeted certain disabilities for special attention by labeling some people severely disabled. Persons with cancer are included among that group but little effort to serve them has been made. The declaration of need is empty without a good faith attempt to bring cancer clients into local offices and make them a real part of the rehabilitation program.

References

American Cancer Society (1987) Cancer Facts and Figures 1987 (No. 5008-LE). New York: American Cancer Society.

Brickner, A. (1978) Action for reducing barriers to employment and community participation, The Role of Vocational Rehabilitation in the 1980s. Perlman, L. (Ed.) Washington, D.C.: N.R.A.

Conti, J. (1981) Vocational rehabilitation, Living With Cancer, 4(5), 1.

Conti, J. (1982) Independent living, Living With Cancer, 5, (1), 3.

Franco, P. (1978) (Ed.) The Challenge of Cancer Rehabilitation: A Handbook for Vocational Rehabilitation Counselors. Richmond, Virginia: Virginia Commonwealth University.

Healey, J. & Zislis, J. (1981) Cancers in Handbook of Severe Disability, Stolov, W.C. & Clowers, M.R. (Eds.) Washington, D.C.: U.S. Govt. Printing Office.

McAleer, C.A. (1975) Cancer: a rehabilitation challenge, Journal of Applied Rehabilitation Counseling, 6, 83-87.

McLaughlin, W.J. (1984) Cancer rehabilitation: people investing in people, Journal of Rehabilitation, 50(4), 57-59.

Pinkerton, S.S. & Nelson, S.B. (1978) Counselor variables influencing rehabilitation outcome of persons with cancer, Rehabilitation Counseling Bulletin, 21, 253-260.

Taylor, C.M. (1984) The rehabilitation of persons with cancer: Is this the best we can do?, Journal of Rehabilitation, 50 (4), 60-62,71.

U.S. Dept. of Education, O.S.E.R.S., National Institute of Handicapped Research, (1980) Psychosocial rehabilitation of cancer patients, Rehab Brief, 10 (3) Washington, D.C., National Institute of Handicapped Research.

U.S. Dept. of Education, O.S.E.R.S., R.S.A. (1987) "RSA 300 tabulations of characteristics of clients whose cases were closed in FY 85," Series C1 and C2, Table T012, RSA IM-87-30, May 14, 1987.

U.S. Dept. of H.E.W., O.H.D.S., R.S.A. (1980) Memorandum from the Commissioner Robert R. Humphreys to the RSA Regional Program Director, Seattle, Wash., March 28, 1980.

JOHN V. CONTI, Acting Regional Commissioner, Rehabilitation Services Administration, Region II, 26 Federal Plaza, Room 4104, New York, New York 10278.