During the devastating worldwide polio epidemics of the 1940s and 1950s, a severe form of polio interrupted the lives of countless children and adults, often in their most productive years. In response to this crisis, modern devices for upper airway care and artificial breathing were developed, including the modern positive pressure ventilator. Mechanical ventilation with proper tracheostomy management resulted in a reduction of mortality from respiratory failure from 90 percent to 20 percent. In addition, the comprehensive medical needs of polio survivors required an interdisciplinary team of physicians and allied health personnel. A regional system of specialized health care centers evolved — the polio respiratory centers. One can trace the birth of modern critical care and rehabilitation medicine to these advances.
The ‘‘polio story” did not end for many survivors with the finding of a vaccine. Some individuals still depended upon life-supportive technology. They required part-time or full-time mechanical aids for breathing, and they had to remain in institutions for an undetermined period of time. These polio survivors were the first ventilator-dependent children and adults. These people developed new approaches to their care and answers to their needs. Working with professionals, families, friends, and voluntary organizations, they created outreaches from the regional polio centers: home care and other community-based living alternatives and support services.
At the present time in the United States, many survivors of critical care must remain needlessly in acute care institutional settings at enormous costs in economic and human terms. These individuals constitute a new population dependent upon life-supportive technology. Examples include patients with high spinal cord injury, severe muscular dystrophy, and a variety of other neurologic, muscular, and pulmonary diseases that previously resulted in early death. They cannot leave acute care institutions because their lives depend upon a machine, and they have no other options. Most rehabilitation centers are not equipped to take care of such patients. Nursing homes are reluctant to accept ventilator-dependent patients because of a lack of knowledge about ventilators, the involved risks, and reimbursement problems. In the majority of cases, potential institutional and community-oriented resources that might be available or adapted to meet their needs are unwilling or unable to do so.
The English Solution—The “Responaut Program”
In England, a responaut is a ventilator-dependent, severely physically disabled person living independently. The term was coined by the responauts themselves; like astronauts, they ventured out into the unknown. Responauts want to and do live as they choose in an appropriate community setting.
The original responauts were polio survivors. In 1965, some were at home without any established systems of services, and some still lived in polio centers which were closing. At the same time, the acute intensive care unit just developed by Dr. G.
Spencer at St. Thomas’ Hospital in London already had long-term ventilator-dependent patients. To serve both populations, the Phipps Respiratory Unit (PRU) at the South Western Hospital was created. From this location, the “Responaut Program” has evolved into an organized system of services available to anyone in England who depends upon prolonged mechanical ventilation or who has a respiratory disability that requires referral to Dr. Spencer. The establishment of this program was a collaborative effort among health care professionals, patients and families, hospital administrators, and government authorities.
Organizational Components of the “Responaut Program”
The “Responaut Program” consists of the following services: (1) comprehensive medical and rehabilitative care in the PRU; (2) planning for a safe discharge to home or to a variety of community alternatives; (3) home care, either provided by one of 17 PRU attendant staff who live in the home of responauts, or by community-based caregivers provided by a government agency and/or government fund; and (4) home maintenance service by medical technologists who respond to all technical and personal needs on a regular and emergency basis. The PRU hospital “base-unit” remains the central focus for the “Responaut Program” because this arrangement provides:
- security for the patients, professionals, and administrators;
- a guaranteed standard of care and quality assurance;
- the most coordinated operational system;
- a medicolegal basis for the protection of all involved parties.
The PRU is a respiratory care unit where patients are first admitted for evaluation, stabilization, and eventual discharge. In 1968, the average length of stay was 568 days; some responauts remained there indefinitely. As a result of the “Responaut Study” initiated by responauts successful self-advocacy, all responauts were discharged. The hospital length of stay was reduced to 18 days (1975) and 11.9 days (1983). This permitted the PRU to function appropriately as a short-term unit for more acute illness, minor adjustments in prescriptions, and outpatient reassessments. Even though the responauts are home, all those concerned know that they are forever the charge of the PRU, no matter where they live. Readmission to the PRU can be initiated by professionals or the responauts.
The physician, a clinical consultant, and educator, receives continuous feedback from home maintenance service technicians, nurses, and the social worker. The senior nurse, an educator, and administrator, supervises patient care on the PRU and nursing care at home. The physical therapist, a clinician, and educator, is in charge of coordinating and providing respiratory and physical therapies in the PRU and serves as a resource person for community-based therapists. The medical social worker meets the psychosocial and financial needs of PRU patients and the responauts at home. Since current health care and social legislation provides a complex reimbursement policy which is partly statutory and partly discretionary, the social worker must coordinate a financial program for each responaut from a variety of options. The medical technicians are experts in electronics and mechanics; they maintain and repair equipment in the hospital and home. The technicians also play significant medical and social roles and provide a vital communication linkage. Their home maintenance service results in both the security and satisfaction of all concerned parties.
Regional Community Options and Services
Not all responauts have families to go home to. Some responauts have temporary or permanent social, educational, and vocational needs that require other options and services to permit a reasonable degree of independent living in the community setting. This is possible by utilizing available resources and facilities which are used jointly with other members of the community. The following examples will illustrate how systems can develop meeting universal needs, as well as those of ventilator-dependent persons when there are linkages to a “base-unit” and its home maintenance service.
Respite Care: The Netley Waterside House was built in partnership between government (Borough of Lambeth) and a voluntary organization (REFRESH)—a group of responauts, professionals, and concerned people. As a holiday home, Netley serves the respite care needs of four responauts and 26 persons who are disadvantaged or elderly.
Education: Chailey Heritage Hospital and School, a long-established hospital, residential school, and recognized rehabilitation engineering center, serves 160 severely physically disabled children. Staff members have accepted the challenge of one 14-year-old spinal cord injured responaut, and he is provided with computer-based education and personal care.
Group Living: Le Court Cheshire home is an independent living center which offers a community of disabled adults a group-living experience with shared services. Le Court is equipped to serve responauts who have chosen this alternative as appropriate for their unique social and financial circumstances. It is only one of several homes of the Cheshire Foundation meeting this need.
Technical Aids: For all responauts living at home or elsewhere, more independence is possible because of electronic and computerized technical aids designed with the input of disabled persons. This is done by a not-for-profit organization controlled by charities (Possum). Assistive devices, which are bought with public funds, permit the physically-disabled person a greater degree of independence and a reduced need for personal care attendants.
Information: The transition to home or to the community requires knowledge of the availability and functioning of technical aids that will permit independence. Ibe Disabled Living Foundation (DFL) provides two essential services for responauts to supplement their education and experience from the PRU. The Technical Aids Center is a permanent display of a comprehensive range of devices. Practical information is disseminated to health care professionals, social workers, educators, hospital administrators, architects, designers, students, and disabled persons. The devices are explained by professional occupational and physical therapists. The Information Service is a major documentation center for disabled persons and all those concerned about disability. As a registry of information, it offers subscriptions for bulletins and indexed information available or prepared upon request.
Self-Help: The Phipps Respiratory Unit Patients Association (PRUPA) is a self-help group founded by responauts in 1978. The PRUPA has made improvements in the PRU, and it has made possible developments in care, services, and equipment. The PRUPA was co-founded and is chaired by Baroness Lane Fox, a quadriplegic polio survivor, who also endeavors to serve all disabled persons as a member of the House of Lords and the All-Party Disablement Group of Parliament.
Advocacy and Documentation: As a small group, although organized, responauts cannot obtain all the advocacy, program research and development, political action, fundraising, and documentation they need. As this group has needs similar to other disabled persons, many voluntary organizations and concerned people have joined to form the Royal Association for Disability and Rehabilitation (RADAR). This organization sponsors important awareness activities, special projects, conferences, and documents of general concern to the disabled, and of vital concern to responauts.
Since 1965, the “Responaut Program” has served 411 patients; neurologic cases comprise 318 (77 percent) of them. As of June 15, 1983, 225 patients were served by the PRU, and the home maintenance program was directly responsible for 176 of them. Approximately 75 patients were served at home monthly; the others were served every two to three months.
Does home care save money? The “Responaut Study” reviews the complexity of cost analysis of home vs institutional care. The experience reveals how difficult it is to calculate real costs. To his best ability, Dr. Spencer provided an estimate of the annual costs of the “Responaut Program.” Currently, $1,125,000 is allocated by the National Health Service for the annual operation of the Phipps Respiratory Unit and the home maintenance service. The PRU cost of $230 per day is reduced by 58 percent ($86 per day) at Netley, and by 76 percent ($50 per day) at Le Court.
The reason it is difficult to determine “true costs” of the Responaut Program” is because its financial foundation is so complex. It includes the following: (1) the involvement of the family member (active caretaker role, lost salary); (2) the original arrangement between St. Thomas’ Hospital and the Department of Health and Social Security (DHSS) providing for the PRU, the equipment, and the home maintenance service; (3) the “Responaut Study,” which provided the initial three years of personal care attendants, who now remain as hospital paid employees (funds from local National Health Service district); (4) both statutory and discretionary funding which makes reimbursement flexible and variable from case to case; and (5) supplemental funding from a variety of charities which is often not taken into account.
What is the quality of survival for the responauts? The judgment of the quality of life is best left to the survivor. There are numerous documents discussing responauts who are living fully in the community with and without families. Because of appropriate support systems, many responauts are active professionals in politics, law, and business.
Ten Elements of Success of the “Responaut” Program
Certain unique political, social, economic and/or cultural realities in England may explain the nature of the “Responaut Program.” In this study, an attempt was made to analyze elements of success which might have applicability to the current national, regional, and local realities in the United States.
Voluntary Organizations (Charities): Charities play a strong advocacy and political role. Charities initiate and develop new services and programs based on demonstrated needs. Government and charities work together from the start in the process of mutual cooperation. Charities often supplement costs not covered by public programs.
The process of Evolution of Services: All programs began with a leader, a small group of concerned people, and private money. Each one had an initial success, which brought more attention from government leaders and consumers, who had been involved as advisors from the start. This initial government involvement led to support, commitment, and later government appropriations for the operation of the program, once it was proven essential and satisfactory to all concerned.
Funding Support: Home care services are supported with public funds based upon legislation. Ventilators at home are prescribed by a physician and must be provided by law. Professional decisions do not depend upon the cost of care. However, healthcare and personal service expenditures are part of a finite allotment which must be divided among multiple competitive and worthwhile organizations. Hence, actual funding of programs can be variable and highly discretionary.
Attitude Toward Disability; Role of Self Help: In England, there is a strong and favorable public concern about disability. This is due to adequate media coverage, parliamentary discussion (All-Party Disablement Group), and effective advocacy by charities (RADAR, DLF, PRUPA). Much success is due to the self-help efforts of the responauts who demonstrate their own abilities.
The Regional Approach: The “Responaut Program” grew from local to national scope due to the expertise developed and the number of persons who required special services. The geographic size of England permitted the centralization of a program; decentralization is now an issue of debate.
The “Base-Unit” A “base-unit” of excellence at a major healthcare institution provides a high standard of care. The “base-unit” also serves as a facility for the stabilization of patients; initial family education, training, and preparation for home; and for meeting the subsequent health care needs, such as readmission and reevaluation.
The Home Maintenance Service: High-quality home care surveillance guarantees competent and reliable preventative maintenance, emergency repair service, and communication to all involved persons. This assures safety and decreases risk for the patient. The responaut feels and is medically secure at home.
Equipment: Home ventilators (respirators) are simple and reliable. They do not have to meet rigid standards and governmental regulations. However, they are designed and improved by experts in home care who are health care professionals or disabled persons who use them. The “Responaut Program” provides excellent preventative maintenance and service to the home.
Liability: Malpractice litigation is less likely. The “Responaut Program” provides a personal service; recipients are satisfied and committed.
Adaptability of Other Services: In England, other available programs, not specifically designed for the ventilator-dependent person, serve as important resources by virtue of their mission: eg, documentation centers for the disabled. Some organizations have adapted to serve ventilator-dependent persons among their other constituencies.
Application of the English Model in the United States
The United States is larger geographically and more complex socially than England. The possibility for home care or alternatives for chronic respiratory disabled children and adults are limited to a few demonstrations. For adults, existing facilities include several respiratory rehabilitation centers: Howard A. Rusk Respiratory Rehabilitation Center, Goldwater Memorial Hospital, New York; Institute for Research and Rehabilitation, Houston; and Ranchos Los Amigos, Downey, C A. In addition, there are few creative approaches to chronic respiratory care units,® and scattered home care experiences. A significant problem exists that the total number of ventilator-dependent people and their location is unknown. A major need exists to document and register this information.
The times of today are vastly different from the period of the polio epidemic.’ Many people find it difficult to meet expenses of routine health care, and they now oppose limitless health care costs. Hospitals, our major provider of care since the 1960s, now face an economic austerity which will limit new program development and expansion of services. At the same time, a gigantic private sector home care industry is preparing to serve the disabled. From 1970 to 1990, the growth of the home health care industry will be 20-fold: from $500 million to $10 billion.
Major public policy decisions are about to be made concerning home health care. Up to now, private and public reimbursement authorities have not yet developed or adapted mechanisms to finance home care equipment and services. There are gross inequalities based on the financial resources of various social classes. All involved are concerned about issues such as a standard of care, quality assurance, and malpractice-liability, a major hidden cost of health care in the United States. Policy experts appropriately wonder if deinstitutionalization will lead to better health at less cost. As an example that this can be done in the United States, the State of Illinois has saved $4.3 million in medical charges after a four-year experience with home ventilator care for children (personal communication, G Bilotti).
There are certain elements that make the observations in England applicable to the United States: (1) All good programs start privately through charitable or voluntary organizations. (2) All evolve with the patience and cooperation of multiple involved interests working together in partnership (government officials, disabled persons, organizations, professionals). (3) Although the reimbursement system for English programs is public, all reimbursement issues have similar conflicts. The same issues are within “government systems” (finite allotments) as are in a private/public system. (4) Effective programs must be initiated in small scope with a defined focus. They must demonstrate their worth before growth and government support. (5) Most programs can adapt to meet multiple needs and hence optimize available resources.