"The Changing Role of the Amputee in the Rehabilitation Process"
Alvin C. Pike, C.P.* - LeRoy Wm. Nattress, Jr., M.A.**
In the late 195O's, the Prosthetics Research Board of the National Academy of Sciences - National Research Council commissioned Bess Furman, a noted newspaper reporter, to write a summary of what had been accomplished in prosthetic research and development since the end of World War II.[1] Reviewing the text of that report today reminds one not only of the state of the art of prosthetics in the United States as we entered that worldwide conflagration, but also of the quantum leaps that were made in prosthetic knowledge, techniques, and devices during the span of only fifteen years. Her opening chapter, "A New Era For Amputees", previews a future that has yet to become reality. One of at least four reasons for this is the removal from amputees of the responsibility for their own prosthetic rehabilitation . The reason for this seem to be the objectification of the amputee through the amputee clinic team and the placement of limits on service, particularly choice of service, by third party payers. The other three failures identified by the writers are 1) the institutionalization of the clinic team concept; 2) the struggle between the business of prosthetics and the profession of prosthetics; and 3) the efforts of third parties to dictate fees in order to control and/or contain costs.
As we approach the twenty-first century it is apparent that each of us must become better informed more responsible consumers of the goods and services provided at all levels and in every sector of the economy including health care. It is clear that we must participate in the decisions that affect the quality of our lives.
To better understand the changing role of the amputee in the rehabilitation process we need to review the history of prosthetics, prosthetic research, and amputee rehabilitation in this country and determine how each has influenced present services and techniques, as well as to look at what we might expect in the future.
Prior to our Civil War there were few artificial limb companies in the United States. Most individuals who were unfortunate enough to loose a limb either made do without the missing extremity or fashioned something that would work for them. Emphasis was placed on being able to work and earn a living or take care of a family. There were no welfare programs, only handouts from churches or rich benefactors.
A number of limb companies did come into existence following the Civil War. Most were started by amputee veterans who had made limbs for themselves or improved on the limbs provided to them and sort of fell into the business when asked to make similar limbs for other amputees. One of the best known of these is the J.E. Hanger Company. Mr. Hanger, an engineering student serving in the Confederate Army, lost his leg to a rifle ball shortly after the war started. Dissatisfied with the appliance provided him to replace his amputated leg he set about to improve the function of his artificial leg. The leg he developed was such an improvement over what was available that in 1861 he was able to found a company, which bears his name today, and obtain an exclusive contract to provide limbs to confederate amputee veterans. We continue to find examples of this kind of spirit among amputees today.
Few technical advances were introduced in the field of prosthetics from the end of the Civil War (1865) until the end of World War II (1945). Advances that were made often came from the experiences of those who were required to wear artificial limbs in order to carry on their daily activities more efficiently and effectively. Many of these developments were patented and were used to either establish a company or provide a competitive edge to an existing company. [a]
A. A. Winkley a horse farmer and breeder had developed a slip socket below knee prosthesis for himself. Lowell Jepson, a horse trader and entrepreneur, who on occasion visited the Winkley farm, learned of Mr. Winkley's improved design, and with funds from "back east" founded the Winkley Company in 1889. This was just prior to the National Civil War Veterans reunion in Minneapolis, Minnesota. The slip socket below knee limb design was marketed to the amputee veterans during the time of the reunion and helped establish the Winkley Company as a world wide mail order limb company. The Winkley Company continues to serve amputees as a private care facility under the leadership of Lowell Jepson's great grandson.
During this time most of the prosthetic development was for the lower limb with little attention given to upper extremity devices This was to be expected as there were many more leg amputees and standing and walking were more satisfactorily duplicated prosthetically than were the functions of the human hand. In fact, most artificial arms were cosmetic and worn for dress occasions.
An exception was D. W. Dorrance, whose right arm was amputated following an accident in 19O9. He, too, was dissatisfied with the limb he received. The upper extremity devices of that time consisted of a leather socket which absorbed perspiration and thus had a distinct odor, a steel frame which was heavy, and one of three types of terminal devices: A heavy cosmetic hand that was covered with a leather or cotton glove; a clumsy limited function mechanical hand; or a passive hook that could be used to lift and carry objects but did not allow for prehension. Dorrance's improvement was the double or split hook, that could be opened by means of a strap across the back which was anchored to the opposite shoulder and closed by heavy duty rubber bands about both hooks. "With missionary zeal, he went all over the country, selling his invention.
At that time it was a common practise not to fit amputees who lost limbs to cancer as the feeling was that they were going to die anyway so why go through the time and expense of fitting them with a prostheses. (This practice was still followed in the late 195O's). The management of the child amputee varied. Fittings were not done until the child was of school age or when full grown - regardless, infants were not fitted and children less than 6 years of age were seldom fitted before the 196O's when the children's amputee clinics became widespread.
The limb companies employed on the road salesmen, most of whom were amputees themselves. These wooden leg salesmen would "ambulance chase" by looking through newspapers for stories of people who had lost limbs or would roam the halls of hospitals hoping to hear word of an amputation. There are stories, one might consider them "tall tales," the various, even nefarious, means used by these salesmen to take customers from their competition in those days. This is part of the lore of the artificial limb field in addition it, was not uncommon for limb companies to subscribe to clipping services to learn about potential clients for their services. Other professions have had their roots in similar practices.
In the small rural towns of America often the local pharmacist or barber would "measure" the amputee and take a plaster cast of the stump. These measurements, along with a shoe, were packed in a box and sent off to a limb company. In a few weeks a completed artificial limb would be returned for the amputee, without the benefit of a trial fitting. In the interim the amputee was instructed to toughen the skin of the stump. General consensus was "artificial limbs were supposed to hurt" and "the amputee would have to get used to the pain."
In the past, but even today, physicians and surgeons viewed amputation as a defeat in their battle with disease or trauma. As a result, once the decision to remove the leg or arm was made, surgery was performed as rapidly as possible with little thought about a prosthetic device, and the patient was discharged. A prescription, if there was a prescription, was often written by another physician and usually read "Fit with artificial leg". Until schools were established in the 195O's few meaningful prosthetic prescriptions were written.
Today, although explicit prosthetic prescriptions can be written, a prescription is not required for service to be provided, although a prescription is required by third-party payers as part of the reimbursement process This continual mixing of business considerations with professional service concerns tends to place the focus on the product than on the skill and knowledge required to meet the needs of the amputee. As a result, the role of the prosthetist as a professional member of the amputee clinic team is weakened, and the amputee is provided with less then optimal care.
The amputee's desire, then as now, is to replace what had been lost, be as functional as possible, but mainly to disguise his or her loss. In our world a missing limb or an abnormal gait seldom carries heroic implications - more often the loss is equated with lowered status, loss of eligibility, for employment and marriage, and shame.[2] The image of "Captain Hook" and "Peg Leg Pete" are ingrained in us as children and only now, on rare occasions, are positive images of the disabled portrayed by the media. If the amputation could not be hidden, amputees had to be hidden away for society's protection as well as their own.
In reviewing the history of prosthetics in this country a number of dates stand out as markers of change, e.g, the founding of the Veterans Administration in 193O, the establishment of the Social Security Administration in 1935, and with this, the beginning concerns for vocational rehabilitation.
The first known amputee consumer's group, The Artificial Limb Users Association, was organized following World War I for exchanging information among amputees and encouraging experimental work to improve the function of artificial limbs. The founder and prime mover was A.G. Bergman of New York City. The group issued a publication entitled "Prosthesis" in October, 1921, and then apparently dropped out of existence.
In the late 1930s Paul J. Cambell of St. Louis, Missouri, founded the Fraternity of the Wooden Leg for the purpose of restoring morale and rebuilding ambition in those who had undergone amputation. The group was incorporated in 1940 with Mr. Cambell as President and Augusta B. Weaver as Secretary. The Fraternity published the bimonthly magazine "Courage" until shortly before Miss Weaver's death in the late 1960s. During World War II and the Korean War "Courage" found its way into the hands of many returning amputees in veterans hospitals throughout the country. The magazine's contribution to the rehabilitation process of countless amputees will never be measured.
Another amputee consumer's group known as the "Conquers," was founded by Louis Sabella and incorporated in 1940 in Chicago, Illinois. The original purpose of this group was to secure employment opportunities for amputees. This organization continues today as the Amputee's Service Association led by Bette Hagglund Its newsletter "Chit-Chat" in recent times has assumed strident advocacy positions.
The Reach to Recovery Program - A self help "visitors" program, now administered by local chapters of the American Cancer Society, for those who have had breast cancer was initially begun in New York City in 1952. The goal of this program is summarized in the following statement: "Reach to Recovery is successful when a woman who has had breast cancer is able to return to her normal activities, is proud of herself, is informed about her disease, and its treatment, and resumes her very special place with her family and friends".[3] The Reach to Recovery Program served as a model for similar visitors programs for amputees in most major cities.
World War II brought many changes, Northrop Aviation initiated upper extremity research as did IBM. Prosthetic research was initiated on the campus of the University of California at Berkeley and Los Angeles. Howard Rusk, M.D. Introduced the concept of rehabilitation as the third phase of medicine. Vocational rehabilitation was legitimatised by the Congress in the early 5O's and the Committee on Prosthetic Research and Development was established under the National Academy of Sciences / National Research Council. Funding was provided by the Army and Navy and both services established their own research laboratories the Army Prosthetic Research Laboratory (APRL) and the Oak Knoll Naval Hospital Amputee Center The Veterans Administration assumed much of this funding responsibility, which later was shared with the Office of Vocational Rehabilitation.
A number of amputee veterans became involved in both prosthetic research and services. Many became prosthetists forming their own companies. It is interesting to note that the prosthetic industry probably had the highest number of disabled individuals in its ranks and leadership than of any other industry in this country, it was truly consumer owned and operated.
Following World War II, research and service emphasis was focused on returning the amputee veteran to an active, productive life. Therefore, the focus was the young adult male who was, in most instances, other wise healthy. The emphasis on children and the elderly would come later. Meeting the special needs of the female amputee is only now beginning to be addressed.
The University of California Los Angeles (UCLA) prosthetic program assumed the upper extremity amputee research projects started by Northrop. Through their efforts upper extremity amputees were fitted with low pressure laminated plastic sockets and split hooks powered by aircraft control systems known as the "Bowden Cable System" and were trained to use these devices.
To train prosthetists, physical therapists, occupational therapists, physicians and surgeons, in this new technology for rehabilitating upper extremity amputees, a series of twelve intensive courses (6 weeks for prosthetists, 2 weeks for therapists, and 1 week for physicians and surgeons) were offered at UCLA from 1952 - 1954. This resulted in the establishment of prosthetic clinic teams in major centers from coast to coast. Similar programs at New York University and Northwestern University followed. These teams were established for the purpose of developing open communication among physicians, therapists, and prosthetists to obtain the best solution for the problem(s) presented by the amputee. The primary function of these programs was the education of the professional service providers. The amputee was there to be "done to" and "done for" - a necessary ingredient, but not a participant. This marked the change in the role of amputees in their rehabilitation from active contributing innovator to passive recipient of service.
The Michigan Crippled Children's Commission "Area Amputee Program" was founded in 1946. This work was led by two orthopaedic surgeons, George T. Aitken and Charles H. Frantz at the Mary Free Bed Hospital. Based on their work terminology for the various types of congenital limb deficiencies was developed and the management of children with missing or severely deformed extremities was sufficiently changed.
In 1917, the United States Council of National Defense, anticipating the need for orthotic and prosthetic services from the conflict that was World War I, called a meeting in Washington D.C. of representatives of artificial limb and brace manufactures across the country. Out of that meeting the Artificial Limb Manufactures Association was organized Interestingly, the brace makers did not want to associate with the limb makers at that time because they considered the limb makers to be sales oriented rather than service providers. In the years between World War I and World War II these differences were resolved and the two fields joined together to become the Orthopedic Appliance and Limb Manufactures Association.
In 1946 a need arose to establish standards for those individuals and facilities providing orthotic and prosthetic services in this country. Individuals were to submit to examination to determine their competence to provide the required services; facilities were required to meet various health and safety standards and employ certified prosthetists and orthotists in the fitting of appliances. The intent of this then, as it is today, was to protect the public and assure them of the best possible service.
The Orthopedic Appliance and Limb Manufactures Association and the American Academy of Orthopaedic Surgeons jointly established the American Board for Certification in Prosthetics and Orthotics in 1948. From that time on only those individuals who successfully met the educational requirements in effect at the time and passed written, oral, and practical examinations could use the title of Certified Prosthetist, Certified Orthotist or Certified Prosthetist-Orthotist. At this same time, the various agencies of the Federal Government involved in prosthetic research and education looked to the National Academy of Sciences / National Research Council to coordinate their efforts. As a result both the Committee on Prosthetic Research and Development and the Committee on Prosthetic Education and Information were established. The latter was instrumental in forming the University Council on Orthotic and Prosthetic Education.
In 1966 the Orthopedic Appliance and Limb Manufactures Association changed its name to the American Orthotic and Prosthetic Association to reflect the growing awareness of and interest in professionalism. While still a trade association, this new identity opened the door to increased emphasis on the education of practitioners and the eventual formation of a professional organization.
The American Academy of Orthotists and Prosthetists with membership limited to those individuals certified by the American Board for Certification in Orthotics and Prosthetics came into being in 197O. The Academy's purpose was and is the furtherance of high quality orthotic and prosthetic care through the education of practitioners providing orthotic and prosthetic services. In the 198O's the American Academy of Orthotists and Prosthetists led the way in working with amputee consumer's groups helping make them aware of the options available in their rehabilitation process. The Academy conducts a yearly symposium for the open exchange of information by all disciplines involved in providing orthotic and prosthetic services, including consumer, on the orthotic and prosthetic options available.
The American Board for Certification in Orthotics and Prosthetics has diligently in the years since its' establishment, gaining creditability with both national and state agencies for the standards established for individuals and facilities providing prosthetic and orthotic services. One reason for this is the continued effort on the part of the Board to review and upgrade its requirements. The Board has been recognized to a level that other standards-setting bodies have emulated its programs and practices in this country and aboard.
In the 1960s and 1970s it was common practice for the amputee, to be presented to the "amputee clinic team", where the physician prescribed what he thought was the best prostheses sometimes in consultation with the therapists and prosthetists in attendance. Prosthetists, representing private facilities, attended these clinics primarily to collect orders for prostheses that were assigned through a "rotation system". Administratively, the rotation system seemed the only fair way for each "limb shop" participating at the clinic to receive its fair share of prosthetic orders in a given year. The consequences of these practices was that there was no incentive to provide high quality prosthetic care. It was also almost impossible for a new prosthetic facility to become established as the volume of new work available was predetermined and often the clinic would accept participation by certified facilities when certification was available only to established facilities. The tension between professional service and the business of prosthetics was actually increased by the way in which the clinic team operated.
The basic "amputee clinic team" was comprised of a physician, who was its chief, his therapist, and prosthetists from the accepted (certified) facilities. The physician's therapist reported his or her evaluation to the physician following a pre clinic examination of the amputee. A new amputee was rarely seen by any of the participating prosthetists prior to the clinic team meeting. The amputee was examined by the physician at the time of the clinic and a prescription was dictated which was given to the prosthetist whose company was next on the rotation list. A secondary role for the therapist was to "check out" the prosthetist's work after the prosthesis had been fitted and delivered to the clinic/hospital. The amputee's role was to provide the amputated stump, and to answer questions when and if asked.
While an argument can be made even today that the amputee population, many of whom are elderly, lack sufficient knowledge to be a meaningful contributor to their rehabilitation process, it is hardly the way to encourage amputees to be active in their own rehabilitation. This method of patient management is expedient, given the demands on the Clinic Team's time, and cost effective in a era when cost containment and cost control are key concepts, but the objectification of care is the likely reason for articles and editorials in the newsletters of the amputee support groups and is more appropriate for an assembly line then for a customized professional service. What is lacking is a system of checks and balances system for quality service.
Given the major changes that have occurred and are occurring in this country, we cannot expect the role of the amputee in the rehabilitation process to remain the same. As we have become a more information oriented society, with an increasing emphasis placed on service the passive role of the amputee is inappropriate, especially since the amputee's involvement directly effects his or her quality of life. We must be prepared for the informed amputee consumer will place even more demands on service providers, in light of the passage of the Americans with Disabilities Act.
Major breakthroughs in information-sharing technology have been realized throughout the world. Never before has so much information been available to so many so immediately. The major drawback is that agreed upon research-validated criteria for the prescription of prostheses have yet to be established Therefore, amputees must rely on word of mouth, managed news releases and advertising for their knowledge about prostheses. This is known and used by service providers. In an environment characterized by misinformation and disinformation, it is not surprising that the most vocal groups of consumers are the amputee athletes. The parents of child amputees are also becoming more informed, but the elderly, a major market share, are not that involved, are more of a captive audience seemingly incapable of informed decisions, and are vulnerable. To alleviate this problem, we should involve more members of the elderly amputee's family in the decision-making process and consider training and employing ombudsmen to act on their behalf.
An example of how this new amputee information system works is the pre-marketing of the "Energy Storing Seattle foot which was done in the news media. Amputees were asking their prosthetist for the Seattle foot long before it was available to prosthetists, without knowing or understanding whether it would be of value to them As new products, technology, and services became available direct marketing to the amputee will be more prevalent and competition for the shrinking health care dollar will become more intense.
With new technology available to improve their quality of life, better informed amputees have been forced to take on a new, and more active role as "consumers". It behooves those of us involved in prosthetic rehabilitation to encourage the education of the amputee population for with more information about the prosthetic options available to them, they will take a more active part in the rehabilitation decision making process, and all of us will be more successful.
Why must the amputee take on the role of "consumer"? Of what value is "informed consent"? What protection does the amputee have who trusts the members of the clinic team to be fully knowledgeable and contemporary? These are questions we must ask and answer objectively. The survival of the professional providers of prosthetic services depends on the amputees we serve. But they must they apply the rule -Caveat Emptor- "Let the buyer beware".
The amputee clinic team concept had as its foundation a uniform body of opinions on the management of the amputee. One dictum was that prostheses be made available only by prescription through the amputee clinic team; another was that prosthetic appliances must meet specific criteria for comfort, function, and cosmesis in that order. The "teams" (physician, therapist, and prosthetist,) were trained at one of only three universities (The University of California, Los Angeles; New York University; or Northwestern University). As members of these "teams" were replaced by practitioners who had not received instruction at one of these three universities, and with the addition of new schools as well as the expanding armamentarium of prosthetic devices, some basic knowledge became diluted, lost and outdated.
Another problem is that there are no reported longitudinal studies of amputees to document limb use over time - acceptance, complications, satisfaction, or changing needs. Without such studies we continue to operate on the basis of opinion. When the Committee on Prosthetics Research Development was in place it provided the structure for evaluating new techniques, components and devices in relation to their safety and effectiveness. The resulting new information was channeled through the schools to the amputee clinic teams. With the demise of that committee a vital link between researcher and amputee was lost; no longer was there a reliable method to transfer technology from the developer to the amputee clinic team.
To further compound the problem, most rehabilitation services are now purchased through a myriad of third party payers. This has added step has been added to the rehabilitation process, and too often the individuals responsible for administering the payment system for amputee management have little knowledge of the clients served or the services provided, much less the service providers. In addition, cost containment policies set by those even further removed from direct patient contact.
Prosthetic research continues, much of it funded through the Veterans Administration grants. However there are serious problems. 1) lack of coordination of research activities or focus on solving specific problems. 2) limited accountability for the funds expended; 3) no central source for information about on-going research. As a result the researchers do not know what is being developed, and repetition occurs increasing costs. The information gap is increased and amputees find that they are further removed from the technology that is being developed to help them.
As noted earlier, there have been amputee support groups in the United States for more than fifty years. Not much was heard from these groups in the past as most were social in nature and often ignored by members of the amputee clinics teams. In recent years the number of amputee support groups has multiplied rapidly, they have become more concerned with service issues and they are becoming more involved in advocacy. In 1988 a number of these groups came together to form a national alliance, The Amputee Coalition of America. Amputees are networking, publishing newsletters, establishing electronic bulletin boards, and are taking an active role in the politics of rehabilitation.
With a national shift toward an aging population, the need for prosthetic services will increase, while the availability of funds and services will likely decrease. As of this writing the prosthetic education program at the University of California at Los Angeles has, after almost 40 years of service announced that it is closing for lack of funding. The program at New York University will end in May of 1991, and other schools with funding problems such as Florida International University may have closed by the time this is printed. This dilemma must be addressed immediately, for without high-level and high-quality educational opportunities for prosthetists, the amputees in this county, regardless of how well informed they may be, will not be properly served.
A preview of advanced prosthetic technology can be see in a number of privately owned prosthetic facilities where as many as 85% of the below knee prosthetic restorations are being accomplished with the aid of first generation CAD/CAM systems. Second generation systems, already on the drawing board, will allow prosthetists to produce mirror images of the amputees' remaining limb, improve upon socket design to enhance comfort and function, and develop prescription criteria based upon a profile of the amputee's life style and mobility requirements.
At this very moment amputee consumers may access information about their condition through personal computers and modems and already existing data bases such as Medline and Compuserve. The amputee consumer can and will be better informed about services and appliances.
We are certain that the amputee clinic team of tomorrow will be more amputee-centered and less appliance-centered-even permitting or accepting the position that some amputees function more effectively without being fitted with a limb or limbs. In fact, the clinic team may assume the position intended when the team concept was originally taught in the early 1950s. That is, each member will independently examine and evaluate the amputee and feed information appropriate for the management of their patients into a data base to which the amputees and those members of their immediate family who are impacted by the limb loss will also contribute information The result will be a list of possible alternatives, ranked by the probably of success in rehabilitating amputees- returning them to maximal function and attending to their quality-of-life needs. Direct advertising, including public information broadcasts and news releases, will continue to create expectations that may not be realistic: The anticipated services may not be available (research versus production), prosthetists may not yet be trained to provide services, and third-party payers may not be willing to pay for these services.
Decisions regarding amputee rehabilitation will still be made by the clinic teams based on the options presented, but those decisions will be based on a probability model with input from all affected and involved individuals. With this we will realize the true amputee clinic team.
* Director, Professional Relations, Otto Bock Orthopedic Industry,Inc.,USA / President - American Academy of Orthotists and Prosthetists 1988-89.
** Senior Associate, Okon Associates, New York, New York and Former Executive Director - American Board for Certification in Orthotics and Prosthetics.
[1] Furman,B., Progress in Prosthetics. Washington, DC : U.S. Government Printing Office, 1962.
[2] Goffman E: Stigma: Notes on theManagement of Spolied Identity> Englewood Cliffs, NJ, Prentice Hall, 1963.
[a] All of the Federally supported research developments in prosthetics following World War II were free of patent restrictions (Protective patents were issued so no one company or individual could gain exclusive rights to devices or techniques).
[3] Reach To Recovery, a brochure of the American Cancer Society, 1982.
PHYSICAL MEDICINE AND REHABILITATION CLINICS OF NORTH AMERICA Vol. 2. No
2, May 1991