Chronic Illness in the United States: Volume II Chronic Illness in the United States, Volume II: Care of the Long-Term Patient [Reprint 2014 ed.] 9780674497535, 9780674497528

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CHRONIC ILLNESS IN THE UNITED STATES

Care of the Long-Term Patient

COMMISSION ON CHRONIC ILLNESS June 1949-June 1956

AN

INDEPENDENT THE

NATIONAL

PROBLEMS ILLNESS,

OF AND

AGENCY

CHRONIC

TO

DISEASE,

DISABILITY

FOUNDERS AMERICAN HOSPITAL

ASSOCIATION

A M E R I C A N MEDICAL ASSOCIATION A M E R I C A N PUBLIC H E A L T H AMERICAN PUBLIC W E L F A R E

STUDY

ASSOCIATION ASSOCIATION

CHRONIC ILLNESS IN THE UNITED STATES VOLUME II

Care of the Long-Term Patient COMMISSION ON CHRONIC

Published for The Commonwealth BY H A R V A R D

UNIVERSITY

Cambridge,

Massachusetts 1956

ILLNESS

Fund PRESS

© 1956 BY THE COMMONWEALTH F U N D

Published for The Commonwealth Fund By Harvard University Press Cambridge, Massachusetts For approximately a quarter of a century THE COMMONWEALTH FUND, through its Division of Publications, sponsored, edited, produced, and distributed books and pamphlets germane to its purposes and operations as a philanthropic foundation. On July 1, 1951, the Fund entered into an arrangement by which HARVARD UNIVERSITY PRESS became the publisher of Commonwealth Fund books, assuming responsibility for their production and distribution. The Fund continues to sponsor and edit its books, and cooperates with the Press in all phases of manufacture and distribution. Distributed in Great Britain By Geoffrey Cumberlege Oxford University Press London

LIBRARY OF CONGRESS CATALOG CARD NO.

56-10165

MANUFACTURED IN THE UNITED STATES OF AMERICA

COMMISSION ON CHRONIC ILLNESS OFFICERS Chairman LEONARD W . MAYO ( 1 9 4 9 - 1 9 5 6 ) , New

York

Director, Association for the Aid of Crippled Children Vice-Chairman EDWIN S. HAMILTON, M.D. ( 1 9 5 0 - 1 9 5 6 ) , Kankakee,

III.

Member, Board of Trustees, American Medical Association Secretary J . D . COLMAN ( 1 9 4 9 - 1 9 5 6 ) ,

Baltimore

Vice-President, Johns Hopkins University and Hospital Treasurer THEODORE G . K L U M P P , M.D. ( 1 9 4 9 - 1 9 5 6 ) , New

York

President, Winthrop Laboratories, Inc. MEMBERS CREIGHTON BARKER, M.D. ( 1 9 4 9 - 1 9 5 6 ) , New

Haven

Executive Secretary, Connecticut Medical Society S. BRUCE BLACK ( 1 9 4 9 - 1 9 5 6 ) ,

Boston

President, Liberty Mutual Insurance Co. SARAH GIBSON BLANDING ( 1 9 4 9 - 1 9 5 6 ) ,

Poughkeepsie

President, Vassar College *LESTER BRESLOW, M.D. ( 1 9 5 4 - 1 9 5 6 ) ,

Berkeley

Chief, Bureau of Chronic Diseases, California Department of Public Health DAVID BROCK, D.D.S. ( 1 9 5 2 - 1 9 5 6 ) , St.

Louis

Chairman, Council on Dental Health, American Dental Association MRS. W . DONALD BROWN ( 1 9 5 0 - 1 9 5 6 ) ,

Minneapolis

Attorney LEROY E . BURNEY, M.D. ( 1 9 5 3 - 1 9 5 6 ) ,

Washington

Assistant Surgeon General, Deputy Chief, Bureau of State Services, Public Health Service S. D E W I T T CLOUGH ( 1 9 4 9 - 1 9 5 5 ) ,

Chicago

Managing Director, Chicago Heart Association WARD DARLEY, M.D. ( 1 9 4 9 - 1 9 5 3 ) ,

Denver

President, University of Colorado JOSEPH W . FICHTER ( 1 9 4 9 - 1 9 5 6 ) , Oxford,

Ohio

Chairman, Ohio Farmers Union GEORGE A . HABERMAN ( 1 9 4 9 - 1 9 5 0 ) ,

Milwaukee

President, Wisconsin Federation of Labor E. L. HARMON, M.D. (1954-1956), Valhalla, Director, Grasslands Hospital MARK H . HARRINGTON ( 1 9 5 0 - 1 9 5 5 ) ,

N.Y.

Denver

Past President, National Tuberculosis Association CHARLES H . HOUSTON ( d e c e a s e d )

(1949-1950),

Washington

Attorney *RUTH HUBBARD, R.N. (deceased) (1953-1955), Philadelphia General Director, Visiting Nurse Society of Philadelphia * Served previously as technical adviser.

MRS. R . LIVINGSTON IRELAND ( 1 9 4 9 - 1 9 5 6 ) ,

Cleveland

Chairman, Committee on the Chronically 111, Welfare Federation of Cleveland ANDREW C . IVY, PH.D., M.D. ( 1 9 4 9 - 1 9 5 1 ) ,

Chicago

Vice-President, University of Illinois MRS. HUGH KIRKLAND ( 1 9 4 9 - 1 9 5 1 ) , Santa Barbara LEONARD W . LARSON, M.D. ( 1 9 5 1 - 1 9 5 4 ) , Bismarck,

N.D.

Member, Board of Trustees, American Medical Association SAMUEL L . LATIMER, JR. ( 1 9 4 9 - 1 9 5 6 ) , Columbia,

S.C.

Editor and Publisher of The State THOMAS A . MCGOLDRICK, M.D. ( d e c e a s e d ) KARL P . MEISTER ( 1 9 4 9 - 1 9 5 6 ) , Chicago

(1949-1952),

Brooklyn

Executive Secretary, Methodist Board of Hospitals and Homes JAMES R . MILLER, M.D. ( 1 9 4 9 - 1 9 5 6 ) ,

Hartford

Connecticut Commission for the Care and Treatment of the Chronically 111, Aged and Infirm * HENRY B . MULHOLLAND, M.D. ( 1 9 5 0 - 1 9 5 6 ) ,

Charlottesville

Professor, Department of Internal Medicine, University of Virginia School of Medicine MOST REV. WILLIAM T . MULLOY ( 1 9 4 9 - 1 9 5 4 ) , Covington,

Ky.

Bishop of Covington THOMAS P . MURDOCK, M.D. ( 1 9 5 1 - 1 9 5 6 ) , Meriden,

Conn.

Member, Board of Trustees, American Medical Association PETER Η . ODEGARD ( 1 9 4 9 - 1 9 5 3 ) ,

Berkeley

Chairman, Department of Political Science, University of California THOMAS PARRAN, M.D. ( 1 9 4 9 - 1 9 5 6 ) ,

Pittsburgh

Dean, Graduate School of Public Health, University of Pittsburgh ELLEN C . POTTER, M.D. ( 1 9 4 9 - 1 9 5 6 ) ,

Trenton

Advisory Council on the Chronic Sick, New Jersey Department of Health *OLLIE A. RANDALL (1953-1956), New York Vice-Chairman, National Committee on the Aging WALTER P . REUTHER ( 1 9 4 9 - 1 9 5 5 ) ,

Detroit

President, Congress of Industrial Organizations DEAN W . ROBERTS, M.D. ( 1 9 4 9 - 1 9 5 6 ) ,

Baltimore

Director, Commission on Chronic Illness EDWARD S. ROGERS, M.D. ( 1 9 4 9 - 1 9 5 6 ) ,

Berkeley

Professor of Public Health and Medical Administration, University of California School of Public Health MEFFORD R . RUNYON ( 1 9 5 3 - 1 9 5 6 ) , New

York

Executive Vice-President, American Cancer Society MRS. RAYMOND SAYRE ( 1 9 4 9 - 1 9 5 2 ) , Ackworth,

Iowa

President, The Associated Women of the American Farm Bureau Federation SIDNEY L . SCHWARZ ( 1 9 4 9 - 1 9 5 3 ) ,

Chicago

Industrialist MRS. LUCILLE M . SMITH ( 1 9 4 9 - 1 9 5 6 ) ,

Washington

Chief, Health Services Organization Branch, Division of Public Health Methods, Public Health Service ALBERT W . SNOKE, M.D. ( 1 9 4 9 - 1 9 5 4 ) , New

Haven

Director, Grace-New Haven Community Hospital ERNEST L . STEBBINS, M.D. ( 1 9 5 2 - 1 9 5 6 ) ,

Baltimore

Director, Johns Hopkins School of Hygiene and Public Health R T . REV. CHARLES A . TOWELL ( 1 9 5 4 - 1 9 5 6 ) , Ludlow,

Ky.

Diocesan Director of Hospitals WILLIAM C . TREUHAFT ( 1 9 5 4 - 1 9 5 6 ) ,

Cleveland

President, Tremco Manufacturing Co. THOMAS J . S. WAXTER ( 1 9 4 9 - 1 9 5 6 ) ,

Baltimore

Director, Maryland State Department of Public Welfare * Served previously as technical adviser.

STAFF

DEAN W . ROBERTS, M.D.,

MRS.

Director

PETER G. MEEK, Assistant Director D E A N E . KRUEGER, Research Associate* MARGERY C U N N I N G H A M , Editorial Consultant

EDITORIAL

COMMITTEE

FOR

SAMUEL L . LATIMER, JR.,

THIS

VOLUME

Chairman

JAMES R . M I L L E R , M.D. H E N R Y B . MULHOLLAND, M.D. E R N E S T L . STEBBINS, M.D. M R S . L U C I L L E Μ . S M I T H , Secretary CONTRIBUTORS A M E R I C A N CANCER SOCIETY A M E R I C A N D E N T A L ASSOCIATION AMERICAN H E A R T ASSOCIATION A M E R I C A N H O S P I T A L ASSOCIATION A M E R I C A N MEDICAL ASSOCIATION AMERICAN PSYCHIATRIC ASSOCIATION A M E R I C A N P U B L I C H E A L T H ASSOCIATION A R T H R I T I S AND R H E U M A T I S M FOUNDATION JOHNS H O P K I N S UNIVERSITY MUSCULAR DYSTROPHY ASSOCIATIONS OF A M E R I C A NATIONAL FOUNDATION FOR I N F A N T I L E PARALYSIS NATIONAL M U L T I P L E SCLEROSIS SOCIETY NATIONAL SOCIETY FOR C R I P P L E D CHILDREN AND A D U L T S NATIONAL TUBERCULOSIS ASSOCIATION N E W Y O R K FOUNDATION PUBLIC H E A L T H SERVICE

CONTRIBUTORS

FOR

SPECIAL

STUDIES

T H E COMMONWEALTH FUND T H E EQUITABLE L I F E ASSURANCE SOCIETY T H E LIBERTY M U T U A L INSURANCE C O M P A N Y E L I L I L L Y AND C O M P A N Y T H E METROPOLITAN L I F E INSURANCE C O M P A N Y NATIONAL H E A L T H C O U N C I L T H E N E W Y O R K L I F E INSURANCE C O M P A N Y T H E R O C K E F E L L E R FOUNDATION

* On detail from the Public Health Service.

Preface book is the report of the Commission on Chronic Illness with regard to care of the long-term patient. It is Volume II of the Commission's series of reports, which includes also Volume I, Prevention of Chronic Illness; Volume III, Chronic Illness in a Rural Area; and Volume IV, Chronic Illness in a Large City. Central to this present volume are the conclusions and recommendations which were adopted in November 1954 and April 1955 and which set forth the Commission's own views with regard to major questions on care for long-term illness. Recommendations 69 and 74 received final action at the Commission meeting in February 1956. Each chapter is built around the conclusions and recommendations in that subject area; and the entire series, in sequence, constitutes the Summary, Chapter 9. In drafting both the conclusions and recommendations and the supporting text, the Commission has drawn upon information resulting from its own activities including especially the 1954 National Conference on Care of the Long-Term Patient, which was held under its auspices. It has also made extensive use of recent data from sources other than the Commission. In sum, it has attempted to synthesize, from its own experience and from the knowledge of many persons and the work of many communities, the best current information and opinion concerning the care of persons with prolonged illness. No such report could have been written without the devoted and skillful efforts of many individuals and groups. A share of the credit belongs to each of the organizations and agencies which has aided and supported the Commission, particularly those which by their generosity made possible the National Conference on Care of the Long-Term Patient: Equitable Life Assurance Society, Liberty Mutual Insurance Company, Metropolitan Life Insurance Company, New York Life Insurance Company, and the Rockefeller Foundation. We are grateful to the Public Health Service of the Department of Health, Education, and Welfare for the staff services which helped make the Conference on Care of the Long-Term Patient a success, especially those of Mrs. Lucille M. Smith who was executive secretary of the Conference. To the other sponsors of the Conference, the American Hospital THIS

ix

χ

PREFACE

Association, American Medical Association, American Public Health Association, and the American Public Welfare Association, we also extend our thanks for the assistance of their staff both before and during the Conference itself. Particularly valuable was the work of the staff associates those organizations have assigned to the Commission: Miss Pearl Bierman of the American Public Welfare Association; Mr. George W. Cooley of the American Medical Association; Dr. Jonas N. Müller of the American Public Health Association; and Mr. Maurice J. Norby of the American Hospital Association. For the planning and organization of this report—a formidable undertaking—a great deal is owed to the members of the Commission who served as an editorial committee: Mr. Samuel L. Latimer, Jr., chairman; Mrs. Lucille M. Smith, secretary; Dr. James R. Miller; Dr. Η. B. Mulholland; and Dr. Ernest L. Stebbins. The committee was assisted in this undertaking by Mrs. Margery R. Cunningham, the Commission's editorial consultant, who wrote most of the report. The Commission wishes also to express its appreciation for the valuable assistance given the project by the Division of Public Health Methods of the Public Health Service. Miss Martha D. Ring wrote the chapter on Research. Dr. Alice M. Waterhouse and Mrs. Maryland Y. Pennell also gave important help throughout the project. Mrs. Ruby H. Strauss served as administrative and secretarial aide in the preparation and indexing of the manuscript. Finally, the Commission wishes to express its thanks to the Commonwealth Fund for publishing the volume. In the years immediately ahead we must conduct more research on the care of the long-term patient and make better use of the knowledge thus gained. We must train more skilled personnel and make more effective use of their services. We must treat the whole patient more adequately, and in the right treatment facility. We must make better and more economical use of funds. Thousands of persons in more than a dozen disciplines are working toward these ends. It is the hope of all of us who have had a hand in it that this report will be a major help in their endeavors. LEONARD W .

MAYO

Chairman, Commission February 10, 1956

on Chronic

Illness

Introduction The Commission on Chronic Illness is an independent, voluntary organization created by the American Hospital Association, American Medical Association, American Public Health Association, and the American Public Welfare Association. The purpose of its seven-year program has been to review and assess the chronic illness problem and attempt to bring order, cohesion, and direction to the many related but unintegrated efforts to prevent and control chronic disease and minimize its disabling effects. While the Commission embraces the philosophy that "the basic approach to chronic disease must be preventive,"1 it has considered one of its major responsibilities to be a study of what prevails and what should obtain with regard to care for prolonged illness. A number of its activities have had a bearing on care: for example, its study of the characteristics of patients in nursing homes and related institutions.2 One in particular, the National Conference on Care of the Long-Term Patient, was devoted exclusively to care. It was held in Chicago in March 1954. The Public Health Service joined with the Commission's four founders in sponsoring it, and 39 national organizations in the health field were participants. As the planning committee for this meeting, the Commission decided that the Conference would focus on the health services needed by persons whose chronic illness is such that some sort of community organization must be brought to bear on the solution of their problem. Many in this group can be substantially rehabilitated. Others cannot be rehabilitated to the point of employment but can in many instances achieve a higher level of self-care. The Conference did not consider the needs of a much larger number 1 "Planning for the Chronically 111." A Joint Statement of Recommendations by the American Hospital Association, American Medical Association, American Public Health Association, and American Public Welfare Association. See Journal of the American Medical Association 135:343, October 11, 1947; American Journal of Public Health 37:1257, October 1947; Public Welfare 5:218, October 1947. 2 Nursing Homes, Their Patients and Their Care: A Study of Nursing Homes and Similar Long-Term Facilities in 13 States (tentative title). A Joint Project of the Public Health Service and the Commission on Chronic Illness. Washington, D.C., Government Printing Office, 1956 (in press).

xi

xii

INTRODUCTION

of persons who have minor impairments resulting from chronic disease or congenital anomaly, which were never or are no longer disabling. These persons usually need only occasional or minor help ordinarily available in most communities.3 The objectives of the Conference were to: Identify the requirements of the long-term patient in the various stages and severity of his illness. Examine existing methods of providing care, explore new methods, and enunciate principles which should govern needed changes. Suggest patterns for desirable relationships among services, facilities, and programs. Recommend various ways to improve the financing of long-term care. Establish direction and suggest next steps for local, state, and national programs for the care of the long-term patient. The "problem" of long-term care is of course a complex of interrelated problems, in its entirety so vast as to defy productive consideration. However, substantial progress can be made by identifying the individual components of the problem and submitting these components to intensive study and research. The Commission devised a pattern which would do this in the pre-Conference phase and which would then permit the Conference to survey the individual components in the light of broad related subject areas. The first step was to divide the subject matter among five major committees. These committees and their chairmen were: The Patient at Home—Dr. Martin Cherkasky, Director, Montefiore Hospital, New York. The Patient in an Institution—Dr. Anthony J. J. Rourke, Executive Director, Hospital Council of Greater New York. Coordination and Integration of Facilities and Services—Dr. Milton Terris, Assistant Dean for Postgraduate Education, School of Medicine, University of Buffalo, Buffalo, N.Y. Research—Dr. Thomas Parran, Dean, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, Pa.; and Dr. Antonio Ciocco, Head, Department of Biostatistics, Graduate School of Public Health, University of Pittsburgh. Financing—Dr. Theodore G. Klumpp, President, Winthrop Laboratories, Inc., New York. ' T h e needs of this group with regard to prevention are discussed in Volume I of the Commission's series of reports.

INTRODUCTION

xiii

Within the five committees, 28 study groups were set up, and each was assigned a limited segment of the problem with which its parent committee was concerned. Each study group was centered in a city with successful experience in the subject under study and built around a nucleus of persons experienced in that particular subject and intimately concerned with it—the operators of programs or services or institutions, for example. The group was augmented by other members in a position to have a valuable but different point of view, such as the users of a service or those involved in financing. The plan was that each study group would constitute a panel of experts who would examine intensively the contribution being made—or that could be made—by the particular kind of program or service on which they were authorities. A total of 369 persons served in the study groups.4 In the ten months preceding the Conference these specialized groups held an aggregate of over 60 meetings—some lasting several days—in 11 different cities from Boston to San Francisco and from Minneapolis to Atlanta. They produced reports identifying the issues most in need of further study and provided a body of factual information for the use of the Conference delegates and the Commission. A complementary body of information was assembled for the Conference delegates in Care of the Long-Term Patient; Source Book on Size and Characteristics of the Problem.5 At the Conference 200 members of the study groups were joined by 200 additional delegates who were participating in the work for the first time. This composite group was organized into 20 discussion groups, still within the framework of the five major committees. The representation of disciplines and experience within these discussion groups was broader than had been the case with the study groups, since the assignment to the discussion groups was broader. Each discussion group included members of pre-Conference study groups on its subject, members of other study groups, and "new" delegates. This composition enabled the discussion groups to relate their subject matter to a wide range of other subjects and services. 4

List of members appears on pp. 452—473. Perrott, G. St. J., Smith, Lucille M., Pennell, Maryland Y., and Altenderfer, Marion E., Care of the Long-Term Patient; Source Book on Size and Characteristics of the Problem. PHS Publication N o . 344. Washington, D.C., Government Printing Office, 1954. 123 pp. Much of the information contained in the source book has been brought up to date and included in this volume. 5

xiv

INTRODUCTION

Each group held three half-day meetings. The results of their discussions—the work of an aggregate of nearly 600 leaders in a variety of fields—became the basis for the reports made to the final general session by the five committee chairmen. Following the Conference, the editorial committee for the Commission's report on care began its work. Though this report would, in effect, constitute the report on the Conference, it was apparent that it should not limit itself to material produced by the Conference but rather should encompass also all other information which would make of it a comprehensive document. Thus, in deciding what should be included, the committee reviewed not only the Conference results but a considerable body of other data on prolonged illness— with the objective of producing a unified report consolidating the work of the hundreds who participated in some phase of the Conference and an unknown number who have taken part in the various studies and demonstrations that make up the total effort—of which the Commission has been the spearhead—to improve the care of long-term patients. The editorial committee with the Commission staff decided on the organization and form of this volume. Finally, throughout the preparation of the book, the committee members gave of their time, thought, and expert consultation to a degree that is in no way reflected in this brief accounting of their activities. DEAN W .

ROBERTS,

Director, Commission February 10, 1956

M.D.

on Chronic

Illness

Contents Preface

ix

Introduction

xi

CHAPTER

1

The Long-Term Patient

3

CHAPTER

2

The Patient at Home

CHAPTER

3

Rehabilitation at Home and in Institutions

131

CHAPTER

4

The Patient in an Institution

163

CHAPTER

5

Personnel and Education

237

29

CHAPTER

6

Coordination and Integration

289

CHAPTER

7

Research for Planning and Administration

323

CHAPTER

8

Financing

363

CHAPTER

9

Summary: Conclusions and Recommendations

National Conference on Care of the Long-Term Patient APPENDIX

A

APPENDIX

Β

Prevalence of Long-Term Disabling Illness

421 445 475

Characteristics of Special Groups of 481

Long-Term Patients APPENDIX

C

APPENDIX

D

The Patient in an Institution

523

APPENDIX

Ε

Health Personnel and Education

537

APPENDIX

F

Coordination and Integration

579

APPENDIX

G

Definitions

585

Job Definition and Recommended for Supervisor of Homemaker

Index

Qualifications

Service

519

589

XV

CHRONIC ILLNESS IN THE UNITED STATES

Care of the Long-Term Patient

CHAPTER 1 THE LONG-TERM PATIENT

Who Is the Long-Term Patient? Where Is the Long-Term Patient? The Long-Term Patient's Needs for Care Major Elements of the Problem of Long-Term Care Short- and Long-Term Illness and General Medical Care Rehabilitation as an Element of Care and Prevention Overemphasis on Institutional Care Mental Health Services Need Overhaul Money Inadequate Trained Personnel Coordination of Services Attitudes Toward Long-Term Illness The Need for Additional Facts How Well Are We Doing in Meeting Needs?

5 7 10 12 13 14 15 17 17 18 19 21 22 23

Chapter

1 The Long-Term Patient

WHO IS THE LONG-TERM

PATIENT?

Chronic disease "comprises all impairments or deviations from normal which have one or more of the following characteristics: are permanent; leave residual disability; are caused by nonreversible pathological alteration; require special training of the patient for rehabilitation; may be expected to require a long period of supervision, observation, or care."1 Not all persons who have a chronic disease are long-term patients. Long-term patients are "persons suffering from chronic disease or impairments who require a prolonged period of care, that is, who are likely to need or who have received care for a continuous period of at least 30 days in a general hospital, or care for a continuous period of more than 3 months in another institution or at home, such care to include medical supervision and/or assistance in achieving a higher level of selfcare and independence."2 Studies have not been made to determine how many persons meet this definition. Obviously, however, it is a much smaller group than the 28 million who have the physical and mental impairments described in the definition of chronic disease. Most of these 28 million persons either never had, or no longer have, the kind of handicaps that call for specialized facilities or services. Combining information from several sources results in an estimate— for 1950—-of 5.3 million persons disabled for over three months.3 This 1 Proceedings of the Conference on Preventive Aspects of Chronic Disease. March 12-14, 1951. Baltimore, Commission on Chronic Illness, p. 14. 2 Perrott, G. St. J., Smith, Lucille M., Pennell, Maryland Y., Altenderfer, Marion E. Care of the Long-Term Patient; Source Book on Size and Characteristics of the Problem. PHS Publication N o . 344. Washington, D.C., Government Printing Office, 1954, p. 7. 3 See Appendix A (reproduced from Care of the Long-Term Patient; Source Book on Size and Characteristics of the Problem).

5

6

C A R E O F T H E LONG-TERM P A T I E N T Age 0

5

Percentage disabled 10

15

20

Under 15 15-44 45-64 ι 6 5 and over All ages FIG. 1.

Percentage of population disabled, by age

is a composite group, the estimates for which were drawn from the 1950 Census and two special studies: 4 a. All persons residing in hospitals and institutions for long-term care—mental, tuberculosis, and chronic disease hospitals; all persons residing in homes and schools for the mentally or physically handicapped. All of these are assumed to need a prolonged period of care. b. Four out of five persons residing in nursing and convalescent homes and homes for the aged and dependent. c. The noninstitutional population between ages 14 and 65 who reported on household interview an illness or condition that—for more than three months—prevented them from doing regular work or carrying out other duties, or allowed them to work only occasionally.5 d. A percentage of the groups under 14 years of age and 65 years and over. Since the Current Population Surveys did not cover the younger and older ages, estimates were made for these age groups. The composite group thus constituted corresponds fairly closely though not precisely to the definition of long-term patients. This is the group whose chronic illness problem is such that it usually can be solved only with the help of the community. It is this group which is the subject of the present volume. These 5.3 million disabled persons constitute 3.5 per cent of the total population of the United States. The older the individual, the more likely he is to be disabled (see Fig. 1). 4 Woolsey, Theodore D. Estimates of Disabling Illness Prevalence in the United States. Based on the Current Population Surveys of February 1949 and September 1950. Public Health Monograph No. 4. PHS Publication No. 181. Washington, D.C., Government Printing Office, 1952. 16 pp. See Appendix A, Table A - 3 . ε Ibid.

7

THE LONG-TERM PATIENT

Two-fifths of the disabled are age 65 and over, as shown in the following tabulation: Age All ages Under 15 years 15-44 45-64 65 and over

No. (millions) 5.30 .25 1.17 1.78 2.10

Per cent 100 5 22 34 39

Statistics are lacking to show for the entire group of 5.3 million what kind of person the long-term patient is—what he is like, what diseases he is suffering from, what his limitations are, what kind of life he leads. Only a partial picture exists. The appendices to this volume contain the descriptive information that is available on a limited number of long-term patients. A number of public programs which serve large numbers of longterm patients have collected some types of information: crippled children's programs, public assistance, vocational rehabilitation, and Veterans Administration.® Information is also presented on patients in mental hospitals and psychiatric services of general hospitals, and residents of homes and schools for the mentally and physically handicapped, patients in tuberculosis hospitals, patients in nursing homes and similar establishments, and patients under the care of selected visiting nurse organizations.7 Some of these patients are further described in connection with sections of this report which deal specifically with their care. Patients in still other categories—for example, some who require foster home care or are at home under the care of a private physician—are characterized in various ways in the text or described in case stories. Among all these patients, the diseases which are most likely to be the cause of long-term illness are cardiovascular-renal diseases, nervous and mental diseases, arthritis and rheumatism, accidents, senility, tuberculosis, blindness, cancer, asthma, and diabetes. There are, of course, other diseases which cause long-term illness. Facts are not available, however, on which to rank even the major causes in order of importance.8 WHERE IS THE LONG-TERM

PATIENT?

Of the 5.3 million long-term patients under consideration, 1.1 million are in long-term hospitals and institutions on a given day and 4.2 million live at home. ' See Appendix Β for statistical data on these groups. See Appendices Β and D . 8 See "The Need for Additional Facts" in this chapter and "Estimating the Dimensions of the Problem" in Chapter 7 for discussion of the need for these facts. 7

8

CARE OF THE LONG-TERM PATIENT

The "at home" group includes persons in their own homes, in homes of relatives, in foster home settings, and in short-term general hospitals. It is estimated that those in general hospitals on a given day total about 45,000.® Although a larger proportion of all the disabled are at home than in institutions, relatively more of the older are at home and more of the young adults are in institutions. Millions Age

Under 15 15-44 45-64 65 and over

At home .20 .81 1.43 1.75

disabled In institutions .05 .36 .35 .35

Percentage At home 81 69 80 83

disabled In institutions 19 31 20

17

Approximately equal numbers of young adults, middle-aged, and older disabled persons are in institutions (Fig. 2). The institutionalized population is divided between long-term hospitals and long-term homes and schools (Fig. 3). Nearly two-thirds—about 710,000—are in long-term mental, tuberculosis, and chronic disease hospitals. An additional 155,000—deaf, blind, feeble-minded, epileptic, etc.—are in homes and schools for the mentally and physically handicapped. Another 235,000 disabled persons are in nursing and convalescent homes and homes for the aged and dependent. 10 The numbers of disabled persons in the different types of long-term institutions vary markedly, with a great preponderance in mental institutions. As would be expected, there are also great differences in the extent to which each age group of the disabled uses the several types of institutions. The relationship between age of patient and type of institution in which he resides obviously is tied to diagnosis. For example, relatively few persons 65 and over are in tuberculosis hospitals, whereas a significant proportion in the age range 15-44 are patients in these institutions 1 Estimated on the basis of a Commission on Chronic Illness study of length of stay in 19 general hospitals in Maryland in 1953 and a survey by the Hospital Council of Greater N e w York of discharges from 15 general hospitals in March 1953. 10 Information from the 1954 National Inventory of Nursing Homes and Related Facilities indicates that this figure (based on the 1950 census) is probably low. It could be nearer 300,000. The latter estimate is based on 450,000 beds (see Chapter 4, Table 5 ) with an assumed 80 per cent occupancy rate and 80 to 85 per cent of the patients disabled longer than three months.

THE LONG-TERM PATIENT

Age

9

No. of disabled persons in (millions) 1.0 1.5 - Γ "

2.0

Under 15 15-44

In institutions

FIG. 2.

Number of disabled persons in institutions and at home, by age

100

No. of disabled persons (in thousands) 200 300 400 500

600

LONG-TERM HOSPITALS Mental

n

Tuberculosis

W/, m

_J

Chronic disease

HOMES AND SCHOOLS Mentally handicapped

m

m

Physically handicapped Nursing homes homes f o r a g e d

FIG. 3.

m

Number of disabled persons in institutions, by type of institution

CARE OF THE LONG-TERM PATIENT

10 Age

Percentage of institutionalized population

0

10

Mental

FIG. 4.

20

30

40

50

60

Mentally handi· capped

70

80

Physically handicapped

90

100

Nursing homes and homes foraged

Percentage distribution of institutionalized population, by type of institution and age

(Fig. 4). In the younger ages, under 15 years, more than half of the disabled persons in institutions are in homes and schools for the mentally handicapped. In the older ages, 65 years and over, nursing and convalescent homes and homes for the aged and dependent are the main sites. Only in the between years, 15-64, are more than half of the disabled institutionalized persons residents of mental hospitals. THE LONG-TERM PATIENT'S NEEDS FOR CARE

Every long-term patient has one major need: to be looked upon as an individual, whole person. The urgency of this need was made clear by the National Conference on Care of the Long-Term Patient, where one report after another reiterated that the long-term patient needs to be identified as a person and not as a disease or a focus of a program, and needs to be considered at all times as an individual with specific relationship to his family and the community. Other needs for care arise from the nature of chronic illness. In contrast to acute illness, which is characterized by rapid change, chronic illness may progress or subside so slowly that change can be measured only over the weeks, or months, or years. Change may be so gradual that it is easy to believe there is no change. Yet one of the fundamental features is that exacerbations and remissions do occur—and care and treat-

THE LONG-TERM PATIENT

11

ment must be modified accordingly. Moreover, while the change in the disease or impairment itself may occur slowly, or not at all, the patient's reactions and responses to his condition are likely to be in a fairly constant state of flux. The impact on the patient differs in important respects from that of acute illness. At the Conference on Care of the Long-Term Patient, the Committee on the Patient at Home pointed out: In acute illness where the onset is sudden and the course of illness usually brief, the patient and the family often have sufficient resources— financial and emotional—to cope with the situation. However, in chronic disease the onset is insidious and by definition the course of illness is long. Families are drained emotionally and economically, and associated with all serious chronic illness are important dislocations in relationships between the patient and his family and with society. In treating acute illness it is possible for the doctor to provide virtually all the care, with some assistance in the more severe cases from the nurse. In chronic disease, much more is needed than the doctor's and nurse's skill. The variety of services and facilities useful to long-term patients illustrates the complexity of their needs (and the formidable problem of community organization). At some time in the course of their illnesses, many long-term patients while at home, or in a general or special hospital, or home or other institution, require several of these services: Medical supervision Drug and diet therapy X-ray therapy Surgery Psychiatric treatment Rehabilitation Dental treatment Social service Bedside nursing Physical therapy Appliances Training in the use of appliances Occupational therapy Training in self-care Vocational counselling Education Religious opportunities Friendly visitors

Vocational training Sheltered work, at home or elsewhere Personal adjustment training Homemaker service Transportation Financial aid Assistance in obtaining adequate housing Foster home care Legal aid Convalescent care under medical supervision Custodial care Counselling to modify family's and patient's attitude toward chronic illness or volunteer corps

As this list indicates, the long-term patient needs, in addition to definitive medical care, the kinds of services that will restore his morale, keep-

12

CARE OF THE LONG-TERM PATIENT

ing him intellectually and emotionally in the stream of life. Not all longterm patients will need all these services, but most will need several. The social work, occupational therapy, physical therapy, rehabilitative services, counselling services—all of relatively little importance in acute illness—are of prime importance in the care of the chronically ill. Not only must the long-term patient adjust himself to the realistic limitations imposed by his disability. He may be called upon to modify his conception of himself as a useful human being able to carry his own weight and make a contribution to his world. Often he is regarded by himself and others as inferior, not only with respect to his particular limitations but as a person. He may feel shame, inferiority, even worthlessness as a specific result of his chronic illness, to a degree which his physical condition and his residual potential do not justify and which do not generally obtain as a concomitant of acute illness. Disability may have overtaken him almost instantaneously—for example, following an accident or a stroke. In addition to prompt and adequate medical care, he will usually need help in adjusting to this sudden interruption in life as he expected to live it, and in assessing his strengths for making the best of a situation which ultimately may not be as bad as he at first thinks. If illness or injury leaves him with a permanent impairment, he will need to find new ways of satisfying his old interests, new ways in which to be useful. The services which can help in these situations may involve more time and effort than the purely medical care, but the long-term patient desperately needs them. Moreover, he needs them promptly while he still wants to make the effort. MAJOR ELEMENTS OF THE PROBLEM OF LONG-TERM CARE

The total problem which communities must face in meeting the needs of long-term patients is not a group of separate problems to be solved one by one in simple progression. For the community—as for the individual —long-term illness presents a complex of problems so interrelated that many of them require simultaneous solution. Simultaneous solution is possible only if the major elements of the problem are widely recognized and their relationship understood. Consideration of these major elements as a group throws light on how some of them, not seen in perspective, are or can become major obstacles to progress. This section of the report therefore is designed to describe these major elements in broad and general terms. Succeeding chapters will deal with them more specifically. The problem can be summarized in terms of

THE LONG-TERM PATIENT

13

the following needs: (a) to integrate care of the chronically ill with general medical care; (b) to incorporate rehabilitation in all phases of care; (c) to de-emphasize institutionalization as the solution to the problem; (d) to extend mental health services and refocus the objectives of most mental institutions; (e) to improve and extend all of the present means of financing long-term care and develop new ones; (/) to increase the numbers of trained personnel and improve the quality of their training; (g) to develop in every community and at state and national levels ways to coordinate facilities and services; (h) to carry on vigorous programs to accelerate the change in attitudes toward long-term illness; and (i) to gather additional facts on the extent of the problem and the utilization of medical care resources for long-term care. Short- and Long-Term Illness and General Medical Care The dramatic and acute short-term illnesses have long claimed the major attention of professional groups and general public; chronic illness has suffered in consequence. This neglect of chronic illness has been reflected in program arrangements and facilities. Medical care is geared to shortterm illness. A general hospital, for example, is likely to operate at a tempo primarily designed for emergencies and acute problems—a tempo quite unsuited to the chronically ill. Except in hospitals with a well-rounded and active teaching program, professional interest tends to gravitate to the more acutely ill. Attention to nonacute phases of chronic illness is inclined to be transient and minimal, and professional services to the long-term patient are often meager. Many chronic patients need careful and systematic follow-up if their improvement is to be maintained. Few general hospitals make provision for such follow-up; geared as they are to acute illness which seldom needs follow-up, the hospitals simply adhere to the discharge procedures they have established for acute patients. Physicians caring for patients at home are also apt to apply to longterm illness the pattern familiar in acute illness: one or two home visits and fairly simple instructions to the patient and his family. If there are no spectacular complications, the doctor and patient may not see one another again for months or years. For the long-term patient, sporadic visits at infrequent intervals must be replaced by fairly continuous medical supervision over weeks, months, or years. In short-term illness, the doctor rarely needs to call upon the nurse

14

C A R E OF T H E L O N G - T E R M P A T I E N T

to amplify his service to the patient at home. Care to the long-term patient will often require not only nursing service but also physical and occupational therapy, social services, and a variety of other services. For the long-term patient, the solo practice of the doctor must often give way to the team approach. It is fallacious to assume that the neglect of long-term illness—in part due to the extent to which medical care is geared to acute illness—will be corrected by further separation of the care of the long-term patient from the general medical care. On the contrary, prevention of chronic illness and care of the chronically ill should be an integral part of general medical care. Chronic illness now accounts for the major share of all serious illness. The size of the problem alone precludes dissociating the care of the chronically ill from the general problem of medical care. The insidious and asymptomatic character of many chronic diseases further highlights the need to integrate care of long-term illness with general medical care—acute illness may become chronic illness and vice versa. Some special features of the chronic diseases deserve emphasis, require special approaches and special service. For the most part, however, these special aspects must be woven into the framework of general medical care. They "cannot be medically isolated without running serious dangers of deterioration of quality of care and medical stagnation." 11 What is needed is integration of care for both acute and chronically ill in general medical care; application of prevention, care, and rehabilitation as one simultaneous or continuing process. Rehabilitation as an Element Care and Prevention

of

Our failures with regard to rehabilitation are of two kinds. By and large we still do not think of rehabilitation as an integral part of care—and with important implications for prevention. Rather we still consider it a definitive action to be tacked on at the end of definitive medical care. By and large we apply only scantily the technical knowledge that is now available. This failure is partly the result of faulty thinking with regard to the real nature of rehabilitation. Surely we would not do so 11 "Planning for the Chronically 111." A Joint Statement of Recommendations by the American Hospital Association, American Medical Association, American Public Health Association, and American Public Welfare Association. See Journal of the American Medical Association 135:344, October 11, 1947; American Journal of Public Health 37:1259, October 1947; Public Welfare 5:220, October 1947.

15

THE LONG-TERM PATIENT

poorly if there were general recognition that to neglect these skills is to fail in both care and prevention. By neglecting them we are literally creating disabilities that need not exist. It is still commonplace for the hemiplegic to be discharged from the general hospital without any retraining, as soon as the acute medical crisis is passed. He may deteriorate quite rapidly to the helpless, speechless bedridden invalid with incontinence, contractures, and bedsores, in spite of the fact that we know that with proper rehabilitative care many of these patients can learn again to talk and walk, to control their body functions, and lead a fairly normal and productive life. Many such examples could be cited. They point up our neglect of rehabilitation possibilities per se. They also show forth our failure to recognize that rehabilitation often prevents further deterioration; that proper preventive measures often obviate the need for rehabilitation and cut down the need for treatment; that prevention, care, and rehabilitation are inseparably intertwined in fact, and in practice should have no dividing lines. Improvement in applying rehabilitation depends in part upon additional facilities and trained personnel. It depends even more heavily upon increased interest among hospitals and professional people and a willingness to embrace the concept of an interdisciplinary team working jointly toward rehabilitation. Overemphasis on Institutional

Care

Overemphasis has long been given to institutional care of long-term patients as the solution of their problems. Even though less than one-fourth of the patients are in hospitals and other medical institutions, many of the ones who are in such places could—under suitable conditions—be cared for as well or better, and more economically, at home. It is true that construction of additional facilities is needed, particularly for patients needing rehabilitative services and those whose need is primarily for skilled nursing care. More and more beds for long-term care, however, will not solve our basic problem. Administrators of mental, chronic, and general hospitals verify the presence in institutions of large numbers of patients whose care requirements could be better met in the home if nursing services and limited technical services could be made easily available to them—an orthopedic bed for the fracture patient; someone to give a mercurial diuretic to a cardiac patient; someone to lift a heavy paralytic in and out of bed occasionally; someone to shop for the arthritic housewife. The story is re-

16

CARE OF THE LONG-TERM PATIENT

peated over and over. As soon as one important need of the patient develops that the family cannot meet, the patient is placed in a nursing home or some other facility. Once the admission occurs, particularly if the patient is a public charge, the spot in the home from which he came closes over and disappears. The social worker who later tries to help the patient return to his home finds that there have been readjustments and there is no longer a place for the patient. An unknown but admittedly large number of mental patients are occupying institutional beds not because their conditions demand institutional care but because there is no alternative way of caring for them. They could best be cared for in the community if mental hygiene and other required services were available. However, it is far easier to persuade a legislative body to appropriate— or a philanthropic group to devote—funds for a hospital than for care in the home even though extension of home care services would reduce the number of patients who otherwise would be institutionalized. The construction of beds has become an easy escape for those in positions of responsibility who see the problem of long-term care but who are unwilling or unable to face the more difficult job of creating and organizing the community services that will make institutional care less often necessary. Ignoring for the moment the interests of the patient, the sheer force of circumstances represented by rapid aging of the population and the high prevalence of long-term illness among the aged will in time require development of programs for noninstitutional care. Endless construction of custodial facilities would place a very heavy burden of expense on a population already resentful of the tax burden it carries. From the point of view of the patient, it also would be a great injustice to many partially disabled persons who have no real need for institutional care. Home care is an antidote to overinstitutionalization. One of the most constructive steps a community can take is to provide a generous measure of services which will enable families to care for their members at home. Each community will need to determine for itself what services should be offered and by whom. The most frequent and perhaps the most important is the visiting nurse offering bedside care whether under public or private auspices. Other important home services would include social casework, physical and occupational therapy, homemaker service, friendly visitors, and the loan of wheelchairs, hospital beds, and other bedside equipment. These services may or may not be integrated into a fully organized home care program—but if the services are easily available, if administrative obstacles to their use can be removed through skillful

THE LONG-TERM PATIENT

17

community organization, and if practitioners of medicine are fully informed about these services and will in fact make full use of them—then the community can make substantial progress in preventing unnecessary and unwise institutionalization. Mental Health Services Need

Overhaul

More than half the hospital beds in the country are occupied by mental patients. Yet while prodigious sums are being spent for maintenance of these patients, comparatively little is being done in treatment and research. The primary purpose of these institutions must become treatment. The program of too many mental institutions today is limited to maintenance of the patients and to isolating them from society. Many patients having another primary diagnosis suffer also from mental illness; and most long-term patients have emotional problems sooner or later. In short, the mental illness problem permeates the overall field of chronic illness. Yet we have not devised an adequate over-all approach to solving it. Money The financing situation is a paradox. Patently not enough money is being devoted to long-term care; yet a considerable amount of that which is spent is not used effectively. Because of inertia, outmoded practices persist; because of timidity, measures demonstrated to be practical in some communities are slow to spread to others; because of frugality, approaches are adopted that prove to be "penny-wise and pound-foolish"; because of vested interests, the status quo is maintained when a fairly thoroughgoing realignment of methods of providing and financing services would be more economical. We indignantly belabor the private nursing homes for their inadequacies. Yet for the considerable number of public charges they harbor, we, the public, pay rates at which it is clearly impossible to provide services we insist are minimum. General hospitals are urged to welcome longterm patients; yet no regular machinery is provided whereby they can finance this service and, equally important, whereby transfer out of the hospital is assured when the patient no longer needs that service. We sometimes establish one set of services and facilities for the indigent and another for the paying patient—a procedure which may waste the skills of scarce personnel, produce costly duplications, and be detrimental to the members of both groups of patients. As voluntary health insurance continues to grow, more money will be

18

CARE OF THE LONG-TERM PATIENT

available for the care of those who can afford to pay the basic premiums. Trends are in the direction of extending coverage and modifying policies in ways that will benefit the long-term patient; but large groups of these patients are still excluded from the bulk of private insurance and from nonprofit voluntary prepayment plans. Moreover, considerable development must take place if voluntary insurance is to become a medium which serves the long-term patient efficiently. Government funds are frequently held to a parsimonious level, reflecting the traditional philosophy of providing minimum subsistence and care rather than reconstruction of the person's health. All too often public monies are made available in ways that practically preclude their most effective use. The manner in which they can be spent may be so restricted by law that they can pay for some services but not necessarily the kind of service the patient needs. Government often waits until the patient is reduced to the level of public assistance, missing earlier opportunities to halt the deterioration of his health. This in spite of the fact that many programs which are adequately supported are demonstrating good results. The assets of philanthropy are and will remain so limited that they cannot carry a major share of operating costs of programs for care of the long-term patient. However, philanthropy can and should give further stimulus to coordination of services and to experimental, imaginative approaches to provision of care—the type of investment which has been a unique contribution of private money. Such projects as counselling services, homemaker services, and home care programs—all aimed at making better care available to more people but lacking appeal to legislative bodies—are also appropriate to the sponsorship of philanthropic agencies. Inadequate

Trained

Personnel

Shortages characterize all health personnel groups. For long-term care, shortages in these categories are probably the most acute: general practitioners; psychiatrists; specialists in pulmonary medicine and in physical medicine and rehabilitation; public health physicians; nurses, particularly the public health nurse giving bedside care and the practical nurse; trained attendants; medical and psychiatric social workers; occupational and physical and speech therapists; and vocational counsellors. Most of these shortages are not primarily due to insufficient capacity of professional schools. The schools which offer training for most types of the needed personnel report vacancies. Ways must be found of attracting more people into these occupations.

THE LONG-TERM PATIENT

19

Not only must the numbers be increased, but educational programs must be revamped to produce personnel interested in and equipped to care for long-term illness. Education for most of these professions has long been directed to acute illness and has been provided principally in a hospital setting. Interest and skill in serving patients at home need primary emphasis. The professional schools as a rule have failed to prepare physicians and nurses adequately for care of the chronic sick, and have failed to inspire enthusiasm for such service. Only a beginning has been made in remedying this situation. Coordination

of

Services

Lack of coordination of services is a major obstacle to progress. In many communities it may supersede the lack of money. The importance of good working relationships among diverse community agencies, facilities, and interests in providing better care for the long-term patient cannot be overemphasized. Coordination and integration are applicable among local institutions and services, among members of the care team, among public and voluntary agencies; and as between one level of government and another or between a teaching hospital and smaller "satellite" institutions. They are inextricably involved in quality of care, availability of services, and financing. They help greatly in providing the proper service at the proper time, in bringing about early effective treatment to prevent permanent disability, in preventing fractionation of the patient by different specialist interests, and in promoting the team approach which is indispensable to good care for the long-term patient. They help balance the needs for different types of facilities; they help assure that services are available to all segments of the population—persons of different age, race, religion, and economic status; persons entitled by law to some services but not to others, such as veterans. They encourage full use of expensive skills and facilities, increase operating efficiency, and prevent costly duplication. In recent years a promising start in coordination and integration has been made in many localities. Yet in thousands of communities they are underdeveloped or nonexistent. No single agency in any community can meet all the complex needs of the long-term patient; yet without some central organization concerned with those needs, gaps and overlaps in long-term care are almost inevitable. The task of such a central agency is formidable because of the wide range in the needs of long-term patients, the multiplicity of ways through

20

CARE OF THE LONG-TERM PATIENT

which care is financed, conflicting interests and pressures, the existence of outmoded facilities, and other factors. But the formidable nature of the task is matched by the urgency of need in every community. Chronic illness is everyone's problem and, by the same token, no one's clear responsibility. Hospitals, physicians, welfare agencies, health departments, councils of social agencies, community chests—all are deeply concerned and involved but none clearly responsible for charting and pursuing a course of action. If a city has an inadequate junior high school there is no doubt in the mind of the citizen as to where the responsibility for correction rests. Likewise, if diphtheria goes uncontrolled the public knows who is failing in his duty. Not so with care of the long-term patient. If the over-all facilities of a community for care of this group are inadequate, if there are overlapping areas, gaps, conflicting administrative policies of different agencies and the type of general confusion that seems to be all too common, neither government nor the general public can with clarity and firmness say to a legally authorized unit "this is your problem—it is up to you to chart a course of action that will result in reasonable service for families who have encountered disabling chronic illness." For the individual long-term patient, the absence of a single responsible agency is a major lack. Even though in recent years the term "catastrophic" has been widely, if loosely, applied to long-term illness, few communities have located responsibility for helping the individual meet this catastrophe. Everyone knows where to turn for help in the situations so long considered catastrophes that responsibility for help is fixed by law or ethic—to the fire department when one's house is ablaze; to the police when one is assaulted; to the doctor or hospital when one is suddenly and acutely ill or severely injured. But in the less dramatic, slowerto-develop, and more protracted catastrophes due to chronic illness, the individual does not know where to turn. A number of states have set up health department units or independent agencies charged with responsibility for the chronically ill. In a few scattered communities—Essex County, New Jersey; Chicago; Milwaukee; and San Francisco, for example—central services for the chronically ill have been established under voluntary auspices to advise patients, their families, and physicians on where various types of services can be obtained, what they are likely to cost, and which are available without charge or on a part-pay basis. For a community to have a single source of these counselling and referral services is most unusual. Most victims of long-term illness must

THE LONG-TERM PATIENT

21

attempt to make contacts with a vast number of programs, agencies, and institutions before they can locate the specific service needed at a given time and—if the cost is beyond their means—find a source of funds with which to pay. Attitudes

Toward

Long-Term

Illness

Attitudes—warped for generations—are changing as the nature of longterm illness and the needs of its victims are better understood and as better treatment methods become known. Neglect and pessimism are being replaced by an aroused social conscience and by confidence in the value of treatment and rehabilitation. The change is not sufficiently rapid or extensive, of course, and paradoxically needs to be accelerated among persons in the health professions even more than among those in the general population. Previously, misconceptions were so widespread that attitudes constituted the single most important block to progress. They still impede, for much long-term illness is painful, ugly, depressing, and costly. An appraisal of changing attitudes, however, will reveal what kinds of ideas have been modified and provide some measure of what still needs doing. Only a few years ago chronic illness was commonly regarded as hopeless. Now it is well known that many persons who are seriously disabled can be restored to comfortable, happy usefulness. A short time ago most chronic illness was regarded as progressive, if not hopelessly static. Now we know that the progression of the disease can often be interrupted and that its course has many ups and downs. Old age formerly was erroneously confused with chronic illness—the terms even being used interchangeably in much of the literature as recently as ten years ago. Now, it is more generally recognized that chronic illness affects all age groups. The chronic disease problem as a whole has looked so formidable that for years the nation was deterred from even starting to work out a solution. Twenty-eight million—the total of chronically ill—seemed an unmanageable problem. Now we know that some 23 million of this total are not in the problem group in that their diseases and impairments are so minor that they are amenable to the care and services which most communities offer. There remain about 5.3 million. Only for this hard core—roughly about 3 or 4 persons in every 100—is the disability so great that some form of community organization needs to be brought to bear on solving the problem. Following this same line of thinking, it is clear that the share of the

22

C A R E OF T H E LONG-TERM

PATIENT

problem falling to any given community is not so large as to be out of the question. Thus, a community of 100,000 is likely to have about 3,500 persons needing long-term care. A problem of these dimensions does not overtax the imagination, ingenuity, and capacity for change of most American communities. The Need

for Additional

Facts

Although most families are affected by chronic illness, we have no accurate up-to-date measure of the dimensions of the problem. At present, we are not even making substantial progress in gaining the basic information that is needed. Considerable research is being conducted on causes of the various chronic diseases and better measures for treatment, but very little attention is given to studies of how best to apply what knowledge we already have. Since 1949 the United States National Committee on Vital and Health Statistics has emphasized the need for more adequate information on illness. In 1953 that group published a "blueprint" 12 of the needs for statistics on illness in the general population. With the exception of a few community studies, the far-reaching recommendations of that group have not been realized. It is especially unfortunate that the continuing national morbidity survey which the committee designed has not materialized. The urgency of need for additional facts is expressed in the Commission's conclusion and recommendation No. 15.13 The conviction is expressed that fact-finding in the medical and social sciences must have high priority in claims on research funds and research personnel. Only through research can we find clues to the distribution and severity of chronic disabilities of various types, to their obscure causes, and to the factors that impede or accelerate their progression. Only through research can we learn what health resources are needed for the care of the chronically ill and how these resources can be organized with maximum effectiveness, economy, and public acceptance. The achievement of positive health will require the cooperation of individuals with all those who provide health service. Only through the collection, analysis, and use of facts on health conditions, attitudes, and 12 Proposal for Collection of Data on Illness and Impairments: United States. A Report of the Subcommittee on National Morbidity Survey. United States National Committee on Vital and Health Statistics. PHS Publication N o . 333. Department of Health, Education, and Welfare, Public Health Service, October 1953. 13 See pp. 26-27.

THE LONG-TERM PATIENT

23

modes of living can we gear health resources to the health needs of the community. HOW WELL ARE WE DOING IN MEETING NEEDS?

Despite the absence of statistics to measure over-all the extent to which we are meeting the needs of long-term patients, some generalizations can still be made. Some groups of patients would appear to be faring very well—at least receiving the services required to meet their major needs, or most of their needs. They include: a. Patients at home in communities which provide the range of services most often needed by long-term patients and coordinate these services to make them easily usable. b. Patients in general hospitals where care for the chronically ill is well integrated with, and equal to, the care accorded acute patients; and where rehabilitation services are generally available and widely used. c. Patients in well-run nursing and convalescent homes, where the medical supervision is adequate, the admission and discharge policies are appropriate, community services are used effectively, and financing is sufficient for the planned program. d. Needy patients under well-organized home care programs. On the other hand, some groups of patients are getting only fragmentary or substandard care, some are receiving inappropriate care which happens to be available, and some are losing the advantages of prompt treatment while they wait their turns. They include: a. Patients at home in communities where many of the services they need are lacking. b. Patients in general hospitals which indulge in practices that ignore the needs of their long-term patients for diagnostic work-up, evaluation, rehabilitation, and the development of a plan for care. c. Patients in substandard nursing and convalescent homes. d. Patients in overcrowded and understaffed mental institutions. e. Persons who make up the long waiting lists of mental hygiene clinics; the handicapped who have been referred to state vocational rehabilitation agencies but must wait their turns for evaluation. Additional examples of the good and the bad sharpen the spottiness of the picture but fail to define it more clearly. So much for the present. With regard to the future, when the 1950 disabling illness rates by

24

CARE OF THE LONG-TERM PATIENT 14

age are applied to the projected population for 1960, the number of disabled persons increases from 5.3 million to 6.4 million, a 20 per cent rise. By 1970 the number of disabled persons is estimated at 7.4 million, a 40 per cent increase during the 20-year span. These figures do not take into account the possible future accomplishments of preventive measures and increased emphasis on rehabilitation. Undoubtedly, prevention and care and rehabilitation will postpone for many individuals the period of disability. In other cases they will preserve for many years the life of a disabled person who otherwise would die an early death. In the light of these probabilities there is no evidence that the average period of disability preceding death will be reduced. What evidence there is suggests that this period will occur later in life than it now does but that it may indeed be lengthened. In short, a disability problem will remain even in the face of the most promising advances which medical science can envisage. It follows that we owe it to the long-term patients of future generations —as well as those now among us—to redouble our efforts to provide the best care we know how to give. To this end the Commission has adopted the following general conclusions and recommendations: 1. Care of the chronically ill is inseparable from general medical care. While it presents certain special aspects, it cannot be medically isolated without running serious dangers of deterioration of quality of care and medical stagnation. 15 2 · Care and prevention are inseparable: the basic approach to chronic disease must be preventive, and prevention is inherent in adequate care of longterm patients. Persons and institutions assuming care of the long-term patient have an obligation to apply early diagnosis and prompt and comprehensive treatment of the whole patient to prevent or postpone deteriorations and complications which may produce or aggravate disability. 3 . Rehabilitation is an innate element of adequate care and properly begins with diagnosis. It is applicable alike to persons who may become employable and to those whose only realistic hope may be a higher level of self-care. Not only must formal rehabilitation services be supplied as needed, but programs, institutions, and personnel must be aggressively rehabilitation-minded. 4 . Recognition should be given to the importance of the emotional attitude of those whose illnesses become long drawn out, permanently crippling, or in other ways a major frustration. These attitudes embrace morale, motivation, and mood. Personnel in institutions and at home, including the patient's family, must constantly seek to help the patient to endure pain, delay and disappoint14 ,c

Appendix A, Table A - l . "Planning for the Chronically 111" (see note 11).

THE LONG-TERM PATIENT

25

ment, faithfully follow difficult treatment regimes, keep hope alive, maintain a "will to live," and develop a philosophy of acceptance as part of a mature faith. Program planning, schedules, activities, and architectural considerations must bear these points in mind. 5. The Commission on Chronic Illness recognizes that the mental illness problem permeates the entire field of care of the long-term patient. A n over-all attack on all aspects of the problem is long overdue. The Commission commends the Council of State Governments for its comprehensive 1950 recommendations concerning state mental health programs 1 6 and the governors for the vigor with which they have undertaken to turn the recommendations into action. 17 States are urged to continue and accelerate these efforts. But state government action is not enough. Private individuals and organizations must be brought into a coordinated effort with city, county, state, and federal experience. The Commission believes that there is great need for continued emphasis on the development of comprehensive community-wide preventive programs in the mental health field. 6. The cost of programs to provide care to long-term patients should be measured first in terms of human values, of effectiveness, a n d of productivity. The most economical care is that which returns a person as quickly and as fully as possible to the highest attainable state of health and social effectiveness. Practices in conflict with this conclusion must be eradicated and procedures consistent with it substituted. 7. With full appreciation of the necessity for adequate institutional facilities, and realizing that some areas do not have such accommodations and should provide them, the Commission nevertheless feels that henceforth communities generally should place the greater emphasis on planning for care in and around the home. 8. Hospitals, outpatient departments, health departments, nursing organizations, and others furnishing the specialized services required by the long-term patient should re-examine their policies and practices to assure the long-term patient the best of modern medical care. This reorganization should be in the direction of strengthening the personal relationship of physician and patient, bringing the doctor aid and not attempting to substitute the agency for the personal physician. 9. Adequate care of the long-term patient requires arrangements which promote frequent evaluation of patient needs and easy flow back and forth among home, hospital, and related institutions. 1 0 . Coordination and integration of services and facilities are so valuable in promoting g o o d care for the chronically ill that all who are concerned with the long-term patient have an obligation to support and further arrangements to this end. M

The Mental

Health Programs

of the Forty-Eight

States. Chicago, T h e Council

of State Governments, 1950. 17

Governors' Conference on Mental Health. State Government, March 1954.

26

CARE OF THE LONG-TERM PATIENT

11. No pattern for organizing services is satisfactory for all communities. Programs of necessity must be tailored to fit local situations taking full account of what is good in existing resources for care at home or in an institution. Planning should be based on facts—both local and regional—as to needs, density of population, financial capacity, and types of illnesses and accidents likely to prevail. 12. Planning and programs must be directed to the needs of all long-term patients and not limited to those of any special economic, racial, cultural, or other segment of the population. Planning for all long-term patients must, however, take into account the services now available to special groups such as veterans, fraternal, and others. 13. A significant but unknown number of the 5.3 million persons estimated to be long-term patients are ex-servicemen and women. Of the total service to long-term patients, a considerable proportion is provided by the Veterans Administration. Congress is urged to take necessary action to clarify fully the federal responsibility to veterans who are long-term patients, and in doing so to be mindful of the community need for integrating programs for care of all chronically ill patients. 14. Personnel shortages in the professions concerned with the chronically ill remain so serious as to constitute a major block to improvement of care. The number of personnel must be increased by better recruitment, assistance with the costs of education, better salaries, and other inducements to enter and remain in practice. This is particularly applicable to the classes of personnel associated with physicians in patient care. In addition, changes in curricula for undergraduate, graduate, and postgraduate education are needed to produce personnel interested in and equipped to care for long-term patients. 15. Since health is of paramount importance both to individuals and to the strength of the nation, investigations of diseases and their origins and studies of the needs and resources for maintaining and improving health should command a high priority in the spending of research funds. In the past half century research has led to unparalleled advances in improving human health. These achievements give us confidence in the dividends that will accrue from continuing basic and applied research in the biological and medical sciences. In order to increase as well as extend the application of knowledge gained from such research, laboratory and clinical investigations must be correlated with intensive and extensive research designed to measure the dimensions of the chronic disease problem and to reveal the most appropriate and effective methods and procedures for meeting those problems. As guides to methods of organizing, administering, coordinating, and evaluating health services for the chronically ill, research efforts must be extended in four relatively neglected fields of inquiry, to ascertain: (1) the distribution and severity of illness in various population groups; (2) the association of long-term disability with social, economic, genetic, and familial factors; (3) the origins and development of health attitudes and practices that influence

THE LONG-TERM PATIENT

27

people to utilize available health resources; (4) the availability, organization, administration, public acceptance, and effectiveness of various kinds of health services within individual communities. Institutions educating people for the health professions or the social sciences should cooperate with other community agencies in all four of these fields of investigation. They should also give adequate instruction in the significance and techniques of classifying diseases, assessing health conditions, and appraising the effectiveness of health services. 16. Financing long-term illness poses a mosaic of problems: their magnitude defeats the efforts of most individuals; and their stubborn complexity has up to now confounded the efforts of the community. a. The financial burden created by chronic illness may be and often is beyond an individual's capacity to meet. The long-term patient has two related financial problems: maintenance of income; and payment of the medical and other expenses resulting from the illness. A realistic solution to the first of these problems will amelioratebut cannot be expected to resolve—the second. To enable the patient more nearly to meet both problems, present means of dealing with them must be improved and extended and new methods developed. b. The need for community participation in financing long-term care is recognized, but the community's problem has yet to be solved. This problem has two facets, both of which the community must face promptly and forcefully. Care of the long-term patient is not adequately financed from any source, and much of the money now available is inefficiently expended on uncoordinated and overlapping services. More money is needed; and all funds must be used in ways which will make better care available to more long-term patients.

CHAPTER 2 THE PATIENT AT HOME

Most Long-Term Patients Belong at Home The Private Physician and the Patient at Home The Physician's Responsibility to His Long-Term Patients The Physician's Responsibility as a Member of His Profession The Physician's Responsibility as a Citizen Services Needed by Long-Term Patients at Home Nursing Care The Place of Nursing Care in Home Care of the Chronically 111 Types of Nursing Services Needed by the Patient at Home Personnel for Home Nursing Care of the Chronically 111 Public health nursing personnel and their services Private duty nurses and nurse registries Standards for Community Nursing Agencies Providing Service to the Patient at Home Factors Influencing Action Social Services and Care of the Long-Term Patient The Long-Term Patient's Needs for Social Services Social Services an Integral Part of Medical Care Social Services to Patients at Home Social Services from Public and Private Nonmedical Agencies Outpatient Services and Long-Term Care Development of Outpatient Services How Many Outpatient Departments Services and Financing The Potentialities of Outpatient Services for the Long-Term Patient Gearing the program to the community Staffing the services adequately Factors which contribute to high quality care Indications for Extension of Outpatient Services Home Care Programs Historical Background of Home Care Forerunners of the Organized Home Care Program The Organized Home Care Program—the Modern Concept What Organized Home Care Programs Are Doing Home Care from the Patient's Point of View Home Care from the Point of View of the Professions Home Care Programs and Professional Education Indications for Extension of Organized Home Care Developments in the Future

31 32 32 35 35 36 36 36 36 38 38 40 40 41 42 42 47 49 50 53 54 56 57 58 58 59 59 62 63 63 64 66 67 73 75 76 78 79

Homemaker Services Homemaker Service—What It Is Homemaker Service in the United States Today Organization and Administration of a Homemaker Program Essentials of a Homemaker Program Supervision Medical service Social casework Adequate financing Adequate staff Good working conditions Foster Home Care Current Practice in Foster Care Standards for Foster Care Programs Legal Factors Financing Prospects for the Future Mental Hygiene and Treatment Services Mental Illness and Mental Handicap What Is Being Done? Community Services for the Mentally 111 Clinics Community care for "hospitalized" mental patients Toward extending community care Community Services for the Mentally Handicapped The mentally handicapped in the community Meeting the needs of the mentally handicapped in the community Specialized diagnostic services Special education Other community services Information and education for professional workers and the public Services for Handicapped Children Handicapped Children—Their Special Problem Handicapped Children in the Population Keeping Handicapped Children at Home Education of parents and professional personnel Specialized social, educational, and health services Resources for Handicapped Children Dental Care The Necessity of Dental Services for Long-Term Patients The Long-Term Patient and Dental Care Extending Dental Care to Long-Term Patients Housing Long-Term Patients Need Adequate Housing Housing and Chronic Illness Financing and Coordination of Services Needed by the Long-Term Patient at Home

81 81 82 85 85 85 86 86 87 87 87 88 90 91 94 94 95 96 96 97 98 98 101 107 108 108 109 109 110 112 113 115 115 116 116 118 119 120 123 123 124 125 126 126 127 129

Chapter

2 The Patient at Home 1 7 . M o s t long-term patients can best be cared for at home during much of their illness a n d prefer care in that setting under supervision of their personal physician. In spite of this, community planning continues to underemphasize such care. Comparatively little effort has been m a d e to organize a n d provide the means whereby physicians can obtain for their patients the variety of services required to meet the diversified a n d complex needs that arise in long-term illness. 1 8 . It is imperative that the patient's personal physician participate as continuously as possible in the medical care of each patient at all stages of illness. The physician determines the nature, time, a n d place for the patient's diagnostic work-up a n d therapeutic services. The physicians, therefore, must equip themselves with k n o w l e d g e of new methods of treating long-term illness; learn to use other health professions in care of the patient; a n d become familiar with community resources that offer the various services the patient m a y require. 19. part into low,

Planning to improve care of the long-term patient at home should be of a community's general health care program. Such planning must take account the fact that for some patients care at home m a y precede, folor be interspersed with care in a hospital or other institution. MOST LONG-TERM PATIENTS BELONG AT HOME

"At home" in this discussion means living somewhere except in an institution. It applies to almost four out of five, or an estimated 4.19 million, long-term patients who live in their own or their relatives' homes or in foster homes or boarding houses. The situation of the long-term patient at home gains even more significance by virtue of the fact that even more would be in this group if our arrangements for medical care and community services were such as to permit it. The "discharge problem" is general among hospitals of all sizes and types. The situation is illuminated by comments from chronic disease hospital administrators who reported to the Conference on Care of the Long-Term Patient. These are typical: "At the end of our first 31

32

CARE OF THE LONG-TERM PATIENT

year of operation we found that we had 310 patients in the hospital who required something less than full hospital service, yet we were unable to place them." ". . . when custodials arrive they invariably remain, for outlets for them are indeed limited." "As is so commonly the case, even though patients may no longer require the hospital bed, social situations in the home or the lack of a home may prevent discharge." THE PRIVATE PHYSICIAN AND THE PATIENT AT HOME

There are three sources of care for the long-term patient at home: the private physician, clinics, and organized home care programs. The vast majority of long-term patients outside of institutions are cared for by the physician in private practice. Thus, the private physician has a major role and a great responsibility in connection with long-term care. At the same time, the changing socioeconomic situation and changing patterns of medical practice have tended to confuse the character of this responsibility and complicate the process of discharging it. There are three aspects to the private physician's role: his responsibility to his own patients, his responsibility as a member of his profession, and his responsibility as a citizen. The Physician's to His Long-Term

Responsibility Patients

In retrospect, the job of the family doctor of fifty years ago seems fairly simple. He had perhaps never heard of a medical social worker and never seen a physical therapist. Specialists were few and their consultation resorted to only in exceptional circumstances. He could not look for help to many of the modern diagnostic aids and treatment services, for they had not yet been devised. His duty was not so defined, but nonetheless he could plainly perceive it: to be to his patients medical practitioner, social worker, health educator, and friendly guide. The degree to which he was able to do this is evidenced by the reverence in which he is held. Strengthened by the discoveries of medical science and the development of the paramedical disciplines, medical practice at its best can bring today's patient the service and the solace the family doctor used to provide, but raised to a higher power. The private physician's role is to do just that. He is the medium through which this comes about. It is he who must determine the nature, time, and place for the patient's diagnostic work-up and therapeutic services. He is the one in best position to keep abreast of the patient's

THE PATIENT AT HOME

33

total and changing needs and so to insure that all the possibilities for treatment are being realized. The full exercise of this role is of special importance to the long-term patient, who may need so many different kinds of help over so long a period of time. The fulfilling of this role requires that the patient's personal physician participate continuously in his medical care at all stages of his illness. This requirement raises some very fine points with regard to the optimum degree of participation and the techniques of maintaining it. It would be unrealistic to suggest that the personal physician should maintain primary responsibility for all phases of treatment at all times. His continuing participation may consist of relinquishing responsibility in certain situations, sharing it to varying degrees in others, and assuming complete responsibility for periods of time or phases of treatment. Perhaps the best prototype of this technique is seen in the practice of the pediatrician. He is a general practitioner who treats children, and is so recognized by the professions and the public. Consider for example the pediatrician who has as a patient a child with a cleft palate and emotional difficulties. In accepting this child as a patient, the physician assumes complete responsibility for his over-all growth and development. Important to his development is the reduction of his specific disabilities. To reduce and hopefully to eliminate these disabilities, the pediatrician arranges for necessary diagnostic procedures and calls on appropriate specialists to help plan, and then to carry out phases of, a treatment program. When the child goes to surgery, the pediatrician passes on to the surgeon the primary responsibility for the patient until such time in the postoperative course as the surgeon is satisfied that his specialized services are no longer necessary. Between the steps of surgical correction, the pediatrician may share with a medical or psychiatric social worker the conduct of a treatment program which they have jointly planned to reduce the emotional difficulties. Meanwhile, before and after surgery, and concurrently with the treatment of emotional difficulties, the pediatrician watches over the child as a whole, protecting him from communicable diseases, advising his parents, seeking to find his total needs and devise ways to fulfill them. In short, he is the general manager, the medium through which all the medical and allied skills are brought to bear on his patient. This type of management is the optimum for any long-term patient whatever his age. His "growth" may not be physical, but instead may be growth toward greater maturity, or rehabilitation to a higher level of self-care. His "development" may consist only of adjusting to exacerba-

34

CARE OF THE LONG-TERM PATIENT

tions and remissions of an existing disease, or it may encompass the onset of additional illnesses. But like the pediatric long-term patient, he needs a medical supervisor to watch over his total situation, to call on specialist help as indicated, to bring him together with the community resources which can help him. The physician who serves the chronically ill in this manner gives thoughtful consideration to long-term illness from the patient's point of view. He puts himself in his patient's shoes so that he can understand the fears, the discouragements, the family derangements which are usual concomitants of long-term illness and which can have such an overriding effect on the patient's physical condition. To him a sensitive appreciation of the chronic patient's complex of difficulties is basic equipment. It is the cornerstone of the peculiarly effective doctor-patient relationship which is all-important to the chronically ill. This relationship is one in which the patient feels utmost faith in the physician as a medical man and also regards him as a trusted friend. It is strong enough to induce the patient to assume and maintain a proper share of responsibility for his welfare. It is what makes him follow instructions faithfully. It is what keeps him returning for treatment over the months or years when his progress may seem slow or when he may in fact be regressing. In the atmosphere it creates the patient knows that no question of his will be made light of and no reported symptom dismissed as trivial. In its warmth he can bring himself to confide in his doctor fears he may be ashamed of entertaining. It is a major tool of the physician who gives good care to the longterm patient—the medium through which he helps his patient adjust to his whole constellation of difficulties. It is a tool of the doctor's own making, and it is something which every physician owes his long-term patients. To serve his patients in an exemplary manner, the physician must keep abreast of new methods of treatment. To increase his ability to treat the long-term patient, the physician needs to know of new developments not only in the strictly medical aspects of care but among the paramedical disciplines. If he does he will be properly aware of the skills and abilities of the other members of the health team—the first step in learning to work with them. His knowledge of various specialties helps to make him adept at recognizing his own limitations and determining when to seek specialist consultation.

THE PATIENT AT HOME

35

The Physician's Responsibility as a Member of His Profession Every physician has an obligation to do what is within his power to improve the quality of medical care. The exercise of this responsibility redounds to the benefit of the chronically ill as well as other patients. Sometimes physicians have opportunity to participate in projects which are of substantial aid to large segments of the profession. An example is the Kansas regional postgraduate medical education program, of which a main objective is to raise the level of medical practice in rural areas. One of the factors which led to establishment of this program was the request by the medical profession for refresher courses after World War II. Individual Kansas physicians responded by contributing to a fund to help finance postgraduate education for their colleagues returning from the Armed Forces, and the Kansas Medical Society cooperated with the University of Kansas School of Medicine in designing, sponsoring, and promoting the project. In the absence of such programs there are in every locality situations which call for physician action to improve the level of practice. A common one is that which finds doctors arbitrarily denied hospital affiliations. A physician's association with a hospital is an educational experience which improves his competence. It is conceded that hospital privileges should be granted only in accordance with an individual's training, experience, and ability. However, the trend among hospitals, particularly in urban areas, to limit staff appointments to specialists goes far beyond this criterion and denies to many able physicians who are not specialists the educational benefits which accrue from day-to-day contacts with other professionals working in wards and outpatient departments. Physicians who already enjoy hospital privileges are in an advantageous position to remedy this situation. They can press for reappraisal of policies. They can promote the extension of courtesy appointments and special educational opportunities to qualified physicians not on staff. The Physician's as a Citizen

Responsibility

Participation in community planning and action for the benefit of all is a recognized obligation of citizenship. Leadership properly devolves on those best trained to deal with the various matters of community interest. Thus, the physician has a particular responsibility with regard to the health needs of the people.

36

CARE OF T H E LONG-TERM PATIENT

The private physician's proper concern for all patients finds concrete expression in such action as that taken by the Tennessee Medical Association to bring medical care to areas of "medical poverty." A foundation, established by the Association for the purpose, has worked out a plan to provide general practitioner and specialist services to residents of remote areas, who heretofore had no access to medical care. Designed to become self-supporting, the plan has been put into operation with money contributed by individual Tennessee physicians. In communities which are "poor" in services that help the long-term patient remain at home, physicians have a special opportunity to aid the growing group of chronically ill. They can take the leadership in modifying community attitudes and promoting action to make available the services most often needed for patients at home. SERVICES NEEDED BY L O N G - T E R M PATIENTS AT H O M E 2 0 . In addition to physician services, long-term care for many patients— though by no means all—requires nursing, dental, social work, nutrition, homemaker, housekeeper, occupational therapy, physical therapy, and other rehabilitative services. In most communities these services, except nursing, are not yet available for the patient in his home. Communities are urged to make these services available and to develop methods to acquaint professional groups and the general public with them. NURSING CARE

The Place of Nursing Care in Home Care of the Chronically III Nursing care is one of the components of comprehensive care of the longterm patient at home. Next to medical supervision, it is the one perhaps most often needed by these patients—and the one most likely to be available to some degree in communities. Types of Nursing Services Needed by the Patient at Home In varying amount, the person who is sick at home will need the following nursing services:1 1. Personal care services. This includes general nursing care—bathing and feeding; training in proper body posture; keeping the patient com1 See Public Health Nursing Care of the Sick at Home. League for Nursing, 1953. 57 pp.

New York, National

THE PATIENT AT HOME

37

fortable and clean; helping teach the patient to get dressed, to get in and out of bed, and to perform other essential activities for himself. 2. Nursing procedures which have been ordered to implement medical care. In some cases there will be need for highly technical treatments over a long period of time; or for treatments which require considerable judgment to administer; and for improvisation of furniture or equipment. Temperature, pulse, and respiration must be recorded as necessary. Tests such as blood pressure reading or urinalysis must be given as prescribed by the physician. Treatments such as surgical dressings, hypodermic injections, respirator care, irrigations of various sorts, artificial feeding, or catheterization are frequently necessary. With the help of a physical therapist, the nurse may be called upon to provide massage and therapeutic or re-educational exercises for paralyzed muscles or for preservation of function. Throughout such treatments, the patient's condition must be observed carefully, and evidence of progress or distress reported to appropriate medical personnel. 3. Instruction and guidance in relation to the disease and for general health promotion and maintenance. Both patient and family need to understand the disease and its usual course—and how to avoid preventable complications and recurrence of disease. They may need instruction in care or treatments such as insulin injection or colostomy dressings. Instruction relative to general hygiene, nutrition, preventive measures, and general health maintenance is needed on a family-wide basis, and may or may not be related to the immediate disease situation. Prevention of fatigue for the family member giving care is an example of such instruction. 4. Emotional support and guidance. The nurse can help the patient and his family understand, accept, and adjust to illness and to temporary or permanent physical limitations. Expert counselling as part of general nursing care is necessary to minimize or to cope with fears and hostilities that commonly develop in response to the illness situation. An opportunity to express fears and worries about the disease or about family problems to a professional worker who knows when to reassure and when to listen, and when and how to offer specific help, may release, and so reduce, the force of these difficult emotions and their causes. Realistic discussion of rehabilitation possibilities and of the community resources available often do much to relieve legitimate anxiety. 5. Guidance in the use of community services. In the prediagnostic period, those with potential chronic illness need to be directed to facilities for screening and diagnosis, and encouraged to make full use of

38

CARE OF THE LONG-TERM PATIENT

available facilities. When illness has been recognized, supplementary and related services may be needed—physical therapy, occupational therapy, diversional activities, religious counselling, rehabilitation, or educational activities. There is need for interpretation of the services, charges, and policies of hospitals, nursing or convalescent homes, homemaker services, or of the services of nutritionists, social workers, or other specialists who can bring special skills to the family, if the family is to use them wisely. Personnel for Home Nursing Care of the Chronically III Nursing care of the sick at home may be provided by professional and practical nurses, supplied on a part-time basis by a community public health nursing service or employed by the family as private duty nurses. However, by far the most common source for home nursing care of the chronically ill is a family member. Family members who have been prepared in home nursing can and do carry much of the load of home care for the chronically ill. Secondary schools and community groups, including civil defense organizations, have trained a large number of homemakers and potential homemakers in home care of the sick. The American National Red Cross has for many years maintained a nationwide program of training in this field. In the period from 1948 through 1953, a total of 1,063,361 certificates were issued. There is a supplementary lesson in care of the chronically ill which was elected by many groups.2 There is no available count of the number who have had a similar course under other auspices. However, far too few individuals in homes where chronic illness exists have had such preparation. Public health nursing personnel and their services. There are no data as to how many official health agencies provide home nursing care for the chronically ill. In the opinion of professional workers, however, the number is small. Also, the service is likely to be extremely limited as to comprehensiveness of service or segments of the population covered. Local nonofficial agencies such as visiting nurse associations numbered 1,005 in 1952.3 These agencies generally provide home care of the sick on a much more extensive basis than do health departments. 2 Communication from American National Red Cross to Pre-Conference Study Group on Nursing Care for the Conference on Care of the Long-Term Patient, November 10, 1953. s Facts About Nursing. New York, American Nurses Association, 1952, p. 27.

THE PATIENT AT HOME

39

A 1951 survey of nursing organizations by the Commission on Chronic Illness and the National League for Nursing revealed that of 106 cities in the United States with populations of 100,000 and over, 74 have a separate visiting nurse association and 17 have a combination agency.4 According to this survey, only 15 of these cities have no such organization. Data on patient visits were received from visiting nurse associations in 50 of the cities of 100,000 or more persons. These associations made 238,000 visits during a 1-month period in 1951. About 53 per cent of the visits were to chronically ill patients. An additional 79 agencies in smaller cities reported 64,000 visits during the month, half of them to the chronically ill. Similar information is not available for nursing services furnished by public agencies. Data on pay status of visits by visiting nurse associations were supplied for 129,540 visits to the chronically ill (81 per cent of the visits to the chronically ill by the 129 reporting agencies). For almost one-third of the visits, payment was made under contract. The patient paid in whole or part for 37 per cent of the visits. Most of the remaining visits were free because of the inability of the patient to pay. Some visiting nurse associations and public health nursing services of local health departments furnish services other than nursing. The most frequent additional service furnished by the 46 reporting agencies was physical therapy (33 agencies). Nutrition service was furnished by 17 agencies, social service by 9, and occupational therapy by 3. Services other than nursing Physical therapy Nutrition Social service Occupational therapy

VNA 22 11 4 3

Local health departments 10 4 4 0

Other agencies 1 2 1 0

Information on the kinds of services given by VNA nurses in two localities was produced by the studies in Baltimore and Connecticut.5 The services most often given by the Baltimore nurses were bed baths and hypodermic injections. 4 For a description of "combination agency" see A Study of Combination Services in Public Health Nursing. N e w York, National Organization for Public Health Nursing, 1950. 55 pp.; and Progress Report on Combination Services in Public Health Nursing. N e w York, National League for Nursing, 1955. 56 pp. 5 For additional detail on these studies, see Appendix B, section e.

40

C A R E OF T H E LONG-TERM Type of care Bed bath Hypodermic injection Instruction in care of patient Massage and exercise Dressings Enema Crutchwalking Catheter irrigation Temperature, pulse, respiration Compresses

PATIENT

Percentage of patients 35.8 34.3 12.4 6.7 6.1

5.9 .8

.6

.4 .2

Half of the Connecticut patients were given general care.6 Type of care General care and/or treatment Parenteral therapy only Advisory only

Percentage of patients 51.6 38.2 10.2

Private duty nurses and nurse registries. Private duty and hourly nurses constitute an additional source of nursing care, but one which is not being used to any extent by the long-term patient at home. A total of 69,665 nurses engaged in private duty7 in the United States in 1951. Of the private duty calls received by official nurse association registries for professional nurses, 98 per cent were for private duty service in hospitals and only 2 per cent for home care.8 Among practical as well as private duty nurses, the great majority work in hospitals and are not assigned through registries. However, in 1951, 79 of the approved registries served practical nurses, and more than 60 per cent of the calls they filled for practical nurses were for home care. Many state and local nursing surveys indicate that larger numbers of practical nurses could be employed if they were available. Standards for Community Nursing Agencies Providing Service to the Patient at Home Every agency which provides nursing service in the home should aim to operate in accordance with principles which promote efficiency and effectiveness : 1. The over-all nursing care of the patient should be planned with the physician and supervised by a professional nurse. 2. Nursing service should be carefully coordinated with other services. • Ibid. Inventory of Professional Nurses. 1951. 8 Facts About Nursing, p. 79. 7

N e w York, American Nurses Association,

THE PATIENT AT HOME

41

3. There should be constant case review and replanning to adjust the nursing care to the changing needs of the chronically ill patient. Community programs for nursing care in the home should utilize both professional and practical nurses. 4. Emotional and social needs should be given full recognition in planning the amount and type of service to be provided. 5. Direct nursing services should be made available to all patients in the amount and kind needed. Services which are provided only for certain segments of the public, such as the indigent, may be grossly inadequate. Factors

Influencing

Action

As with other components of long-term care, improvement in nursing care of the patient at home depends not on one clearly delineated course of action but on a number of interrelated problems and situations. They include: 1. There is no adequate information about the amount and kinds of nursing care needed and wanted by long-term patients. 2. Planning is customarily done in terms of an institution or agency rather than in terms of total patient welfare. A shift in this approach is indicated to promote continuity and comprehensiveness of care. 3. Attitudes and fears among professional groups sometimes keep them from cooperating fully in community programs. For example, physicians may resist having their patients cared for by a nurse from an official health agency; an established agency may be unwilling to consider seriously or act on recommendations for program changes made by study groups. 4. There is a serious shortage of nursing personnel.9 It will not be possible to increase the amount of home nursing care available to the chronically ill without limiting some other programs, decreasing noneffective time, or adding more personnel. 5. Any extension of care will require local studies of need, use of current resources, and costs. It will also require careful planning to assure the proper relationship between nursing care of the sick at home and the other professions and the institutions involved in the total care of the patient. Such program development can proceed only on a basis of sound public understanding, serious and continuing professional study, and aggressive civic action. 8

See Chapter 5, "Personnel and Education."

42

CARE OF THE LONG-TERM PATIENT SOCIAL SERVICES A N D CARE OF THE

LONG-TERM

PATIENT

The nation's social services are primarily used to help needy persons and families meet their social, economic, and emotional problems. Because chronic disabling conditions are prevalent among low-income groups, most social workers encounter and are called upon to help longterm patients. Increasingly these social services are being made available also to long-term patients who are not needy. The patients served by the country's 5,000 medical and psychiatric social workers are for the most part persons who have—or are likely to have—a long-term illness. Almost all social workers, however, are concerned with some long-term patients and are equipped to help them. Well over half of the 75,000 social workers employed in the United States are in public assistance (41 per cent) and child welfare (17 per cent) programs. These programs and their private agency counterparts are important sources of social services for long-term patients. The Long-Term for Social

Patient's

Needs

Services

To the patient, the impact of chronic disease is quite different from that of short-term illness. Most individuals can face with equanimity the prospect of a few days or even weeks of illness. The definite anticipation that, at the end of a foreseeable period, he will again return to health and normal activity carries enormous restorative value for the patient. Furthermore, the extent of the patient's responsibility in illness is affected by what the doctor and hospital can do. With the development of diagnostic and surgical techniques and the use of antibiotics, blood transfusions, and other modern methods, the patient's role in acute illness is likely to be a relatively passive one in which he submits to a battery of diagnostic and therapeutic procedures and usually gets well. When confronted with the prospect of a long-term illness, however, the patient may be subject to a set of pressures, internal and external, that make almost intolerable demands upon him and his family. To the chronically ill person, the complexity of medical diagnosis and treatment presents a bewildering situation. He may become confused, fearful, depressed. If he has a communicable disease like tuberculosis, he may feel anxiety and guilt about its effect upon the other members of his family. Several chronic diseases that are not communicable present a somewhat similar problem, for people are increasingly aware that medical examination of relatives of persons with heart disease, diabetes, hypertension,

THE PATIENT A T HOME

43

arteriosclerosis, and some forms of blindness, deafness, and epilepsy, for example, may reveal that some of them also have the same disease, previously unrecognized. If a long period of hospitalization is in store for the patient, the prospect of prolonged physical inactivity, separation from family, loss of job, and withdrawal from normal social life may be overwhelming. If, in addition, he cannot find or pay for skilled medical service in which he has confidence, or if care in a suitable hospital or other facility cannot be arranged, his confusion may be confounded by despair. If he knows that no cure is possible and that death is inevitable in a matter of weeks or months, he has to face still more serious problems. If the chronically ill patient does not require care in a hospital, he has to cope with a different set of problems. How can he manage to get a job that will match his skills and not make excessive demands on his working capacity or how can he make necessary adjustments on his present job? Or must he remain homebound, with all the extra demands that his helplessness will impose on his family and friends? Can he adjust to the changes in diet—some of them drastic? How can his family adjust to reduced income at a time when he, as a major cause of expense, greatly increases the need for money? And most important of all, where and how will they find the combination of health and other services needed? The kinds of social services needed by long-term patients run the length of human experience and reaction. They are essentially emotional, economic, or social. In practice it is often impossible to draw a dividing line—the patient's problem may result from a combination of the three. The kinds of social services patients may need include those shown in the accompanying list (p. 44). 10 Brief stories will illustrate the nature of patients' problems toward the solution of which social services are directed and also show some of the method characteristic of social casework—a way of helping the patient as much as possible in his own way and on his own initiative. 10

This listing is drawn from a variety of sources, principally: a. Medical Social Service in Tuberculosis Control. Department of Health, Education, and Welfare, Public Health Service, p. 4. Original printing 1946. Reproduced 1954. 22 pp. b. Berkman, Tessie D. Practice of Social Workers in Psychiatric Hospitals and Clinics. N e w York, American Association of Psychiatric Social Workers, Inc., 1953. c. Study of Medical Social Work in Medical Facilities by American Association of Medical Social Workers-American Hospital Association-Public Health Service (inprocess).

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