2

wu'd question giving a patient a glass eye, an artificial ear or dentures. As a matter of fact, in some governmental agencies it is still a requirement that a patient who has had an amputation as a result of cancer, survive the five year period before a prosthesis will be provided.

It is our hope that we can indicate a reasonable extension of the present delivery system which will humanize this system and significantly recognize that amputation and prosthetic rehabilitation is a family problem viving much more than the replacement of the lost extremity.

2. THE PROBLEM

During World War II there were 16,130 amputations of limbs as a result of some type of combatant or non-combatant action. During the Korean conflict there were 3,176 amputations, and as a result of the American presence in set Nam there have been 5,858 amputations. The Army and Navy hospitals and veterans Administration Hospitals provided the leadership in research and development of surgery and prosthetic rehabilitation for these veterans despite the fact that at the present time this number represents less than ten per cent of the total population.

In contrast to the number of amputations mentioned above, in the Amputee Center at Rancho Los Amigos Hospital in Downey, California, we are Currently conducting surgery at a rate exceeding 200 amputations per year. The Amputee Center of Rancho Los Amigos Hospital is only one center providing these services in the seven Los Angeles County hospitals not to mention the versity of California, Los Angeles Medical Center and other private hospitals. According to the Report from the National Citizens Advisory

ittee on Vocational Rehabilitation there are an estimated 311,000 amputees Tthe United States. However, there is no provision for reporting the uter of amputations to any central agency because we do not have amputee centers in America, and most of the amputations are done either in a private county government level hospital.

As is happening in many other facets of the medical scene with more and improved medical services, the amputee is living longer and therefore the amputee population is increasing. Also, due to improved surgical techniques instead of eighty per cent of the amputations of the lower limb taking place between the knee and hip as was the case ten years ago, at the present time, eighty per cent of the amputations are below the knee. This as resulted in significant changes in the amputee population.

2.1 The amputee population is increasing in age and with this chance in age there has been an increase in the amputee family responsibility. There are more fathers, mothers, grandmothers, and grandfathers among the tee population. Family adjustment problems have increased requiring extended and improved family counseling.

2.2 The increase in numbers of below knee amputations and the increase in age expectancy of amputees carries with it for the individual

with circulatory problems the possibility of later revisions unless there is continuous attention to the medical therapy of the circulatory problem.

In a study at Los Angeles County-University of Southern California Medical Center a consecutive series of older amputees was analyzed by Dr. R. Mazet and associates eleven years ago. In the ten-year period ending in 195 there were 1,365 lower extremity amputations in patients over the age of fifty-five. Prosthetic devices were prescribed for less than ten per cent of these patients, yet in that group of presumably good candidates, half were found to have discarded their prostheses within six months. In fact, just over ten years ago in this older population, ninety per cent of the amputations were above the knee. This was, no doubt, a major factor contributing to high failure rates of wearing prostheses. This previous experience at the Los Angeles County-University of Southern California Medical Center is not alone as a mark of past performance. The five years from 1961 through 1965 at the Wayne County General Hospital, with a similar population of socially and medically deprived patients, 9.9 per cent of amputees received prosthetic devices and seventy-three per cent of the amputations were above the knee.

2.3 In 1971 of a total of 131 diabetics who were referred for amputation to the Amputee Center, thirty-six of these patients were treated effectively by other prophylactic means such as ambulatory casts and special shoes and were saved an amputation. It is felt that had these patients been treated outside of the Center, they would have resulted in amputations.

2.4 The increase of the numbers of females among the amputee population and the current fashion trend for women has drastically changed the cosmetic aspect of prosthetic devices. Women are demanding better matched color prostheses, correct and matched shaped prostheses, and more pleasing transition from prosthesis to leg or arm, as well as the potential of wearing different heights of heels on their shoes.

3. PROFESSIONAL SERVICES

There are several disciplines that provide professional services to the amputee. These include physical, occupational, and vocational rehabilitation counselors, medical social workers, psychologists, prosthetists, orthopedic surgeons, and nurses. The specific professional training for each of these disciplines rarely includes more than a casual reference to the counseling of the amputee and his family.

All of the personnel who deal with the amputee are professional and technically trained to provide services within their own discipline. Primarily, professionals in each of these disciplines are concerned with the technical amputee aspects of only their own discipline. There is no person whose responsibility is serving as the patient's advocate. There are many times when services are available, but because there is no patient advocate, the patient is ignorant of these services. Vocational rehabilitation service has had a system functioning for many years. Unfortunately the reason a patient was referred to them was basically financial. If the patient had

insufficient funds to provide himself with a prosthesis, he would be referred to a vocational rehabilitation counselor. There are now a number of other

res which will provide funding in some cases the patients are able $ Cure a prosthesis, but not the other things so necessary to total rehabilitation which are made available to him in an organized program. Only centers are established such as the Amputee Center at Rancho Los Amigos Hospital, and professionals from all of the disciplines meet together to defire an amputee management program will we understand and deal with the total adjustment problems of the amputee and his family.

4. COSMETICS

The increase in the numbers of female amputees has placed a greater hasis on the cosmetic aspect of prosthetic devices. We have never aestioned the replacement of an excised eye with an artificial eye nor the se of false teeth or wigs, or toupes in the case of missing teeth or hair. Cometic surgery and orthodontia are both accepted as essential to the well being of the individual.

The question of functional use is not the primary concern in this stance. The function of the artificial eye is not considered, it is understood that it will not function but will provide cosmetic improvement and the orvidual is likely to "feel" better about himself.

Therefore, we should not only be interested in providing functional stheses for those amputees who can return to active lives, but we should so provide cosmetic prostheses for even the eighty year old grandmother who has not walked in perhaps ten years, but wants to look better for her friends and family. The questions for the older amputee is not whether they want to w, but rather whether they will look better. Any patient who has had a sert of their body amputated has a right to have that part replaced.

5. FAMILY PROBLEM

The fact that the new amputee is getting older indicates that more are in responsible family positions. They, therefore, face the potential of es of jobs or inability to do housework, problems in their social relations ■th their mates, children, and friends to say nothing about their personal adjustment to the amputation. The pre-amputee and his family have no one to turn to when the decision has been made by the surgeon to amputate the limb. At this point he is a medical patient and the basic concern is to save the *ife.

It seems obvious to us that a medical patient and his family when faced with such a far reaching decision is immediately in need of supportive seling. The medical profession which has been activated to save a life though corrective surgery is usually not in a position to objectively answer Questions which are posed by the patient or his family.

5

Such questions often seek information which goes far beyond the usual background of the medical staff and often includes: prognosis on walking running, and climbing stairs; capability of conducting a normal pursuit of ones occupation--or how one changes from one occupation to another and the availability of training programs; how amputation affects ones relationships with other people, will others be embarassed when looking at an empty sleeve or pant leg?; length of time to be fitted with a prosthesis--how do they fit, stay on, feel? These are, of course, only a few of the more obvious questions and there are often many unvoiced questions with deep psychological implication To allow the pre- and post-amputee to have these questions unanswered is to treat only one aspect--the medical problem.

6. RECOMMENDATION

In view of the (1) changing population trends of the amputee, (2) the need for extensive team services to the amputee and his family, and (3) the technical hardware advances in recent years, the following recommendations are suggested to the Committee as it considers the Vocational Rehabilitation Act of 1972:

6.1 To amend section 409 (a) SPECIAL PROJECTS (1) and (2) to add Demonstration Amputee Training Program.

6.2 To amend section 413 from NATIONAL CENTERS FOR SPINAL CORD INJURIES to NATIONAL CENTERS FOR SPINAL CORD INJURIES AND NATIONAL CENTERS FOR AMPUTEE REHABILITATION.

6.3 Sums to be appropriated to the above shall be commensurate with the other provisions of the reference sections.

Senator CRANSTON. Our next witness is Dr. John S. Young, project director, Southwest Regional System for the Treatment of Spinal Cord Injury, of Phoenix, Ariz.

Thank you also for your presence, and thank you for coming across the country.

STATEMENT OF JOHN S. YOUNG, M.D., PROJECT DIRECTOR, SOUTHWEST REGIONAL SYSTEM FOR THE TREATMENT OF SPINAL CORD INJURY

Dr. YOUNG. First, Senator, I would like to thank the chairman and the committee for giving me the privilege of coming here today and speaking primarily on behalf of the spinal cord injured.

I am Dr. John S. Young from Phoenix, Ariz. I am the project director of the Southwest Regional System for the Treatment of Spinal Cord Injury. This system brings together the Barrow Neurological Institute of St. Joseph's Hospital, the Institute of Rehabilitation Medithe, Good Samaritan Hospital, and other institutions and agencies, riuding the Arizona Division of Vocational Rehabilitation and the Public Health Service, Division of Indian Health, in a system that provides a continuity of patient care throughout the region. The region includes all of Arizona and adjoining parts of surrounding States. We started the system in 1968, and in 1970 we received a major grant from Sial and Rehabilitation Services to demonstrate a regional system for treatment of spinal cord injury.

In March of this year Congressman John Rhodes requested we reView H.R. 8395, particularly section 413 pertaining to National Centers for Spinal Cord Injuries, and submit our opinions and recommendations. We reviewed the section, both in light of our experience and the experience of others, worldwide. We discussed the section with several authorities in the field of spinal cord injury throughout this country and other countries that have developed spinal cord injury centers. We have submitted the following observations and recommendations for amending the section to enable us to demonstrate effective systems of spinal cord injury care in this country.

In essence, Senator, the bill is broad enough to do a good job. However, we felt that there was a certain weakness in this broadness, in that it was not specific enough. Particularly it did not spell out the need for a continuity of care literally from the moment of accident or onset of the injury, and continuing throughout the remainder of that patient's

... time.

We believe that the act as written has a major weakness in that it refers to vocational rehabilitation centers for spinal injury. This is adequate. The whole program for the treatment of spinal injuries is directed at prevention. It is not limited to rehabilitation. We must prevent a whole series of consequences that are costly and devastating to the individual.

The good spinal system must literally be involved with the mechaisms of the accident itself. It must contribute to programs and legislation concerning better automobile packaging, better industrial safety measures, and this sort of thing.

It must be involved in better techniques for the transport of the patient to the treating hospital. Regrettably I can say we have seen