Over the past two decades, the application of advanced technology to the care of patients with respiratory disease has improved survival in acute respiratory failure. However, a considerable number of patients treated for exacerbations of chronic lung disease fail to be weaned from mechanical ventilation, even after prolonged attempts. These persons are often placed on general medical floors of acute care hospitals
for prolonged periods of time or are transferred to chronic care facilities. Their world is limited to the area described by the radius of their ventilator tubing. They rarely leave the confines of their hospital room, never go outside the institution, become dependent upon hospital staff for their care, and virtually cease social and recreational activities. The social and economic loss to society is compounded by the financial drain of chronic institutional care.
We have established a unit for the rehabilitation of ventilator-dependent patients in the belief that if we could successfully apply the principles of musculoskeletal and pulmonary rehabilitation to this group of patients, it should be possible for them to become more responsible for their own care, more mobile and more functional in activities of daily living (ADL). Ideally, many of these persons could be discharged to their homes, and in addition to improving the quality of their lives, the cost of their care could be markedly reduced. This report provides an overview of our methods and summarizes the results in our first 16 consecutive discharges, with a minimum of one year of follow-up.
In January, 1981, an inpatient unit devoted to the rehabilitation of ventilator-dependent persons and called the Respiratory Care Center (RCC), opened at University Hospital, Boston, MA. The unit is located on a floor dedicated to the rehabilitation of patients with neurologic and musculoskeletal conditions. This floor is equipped with wheelchair roll-in showers and bathrooms, a physical therapy exercise room, a recreation room, an occupational therapy training facility with a kitchen and video-tape replay facilities; its corridors are equipped with hand rails. In addition to having the expected complement of physical and occupational therapists, social workers, respiratory therapists and psychologists, all nurses are specially trained and experienced in the discipline of rehabilitation.
The RCC is co-directed by a pulmonary physician and a respiratory nurse specialist. A psychiatrist acts in a liaison role with patients and the staff. Physicians specializing in rehabilitation medicine, clinical nutrition and otolaryngology are consulted on most patients. In-service training provides for interchange of expertise in respiratory care and rehabilitation among the members of the team.
Patients referred to the unit are screened by the unit co-directors after a family visit to the RCC allows the nurse and social worker to assess the family. A physical and occupational therapy evaluation devised by RCC personnel is completed by the staff of the referring hospital. Once all evaluations are complete, the RCC team meets to review the patient s potential for successfully meeting the goals of the RCC and decides on the suitability of the patient for admission to the unit. Criteria for admission are a stable medical condition not requiring intensive medical and nursing care, the absence of conditions other than lung disease that limit life expectancy to less than five years, a physically and psychologically supportive family willing to aid in home care, and patient willingness to participate in the program.
Patients admitted to the RCC proceed through five phases of the rehabilitation program: stabilization, evaluation, rehabilitation planning, rehabilitation training and discharge.
Following transfer to the RCC, the patients preadmission schedule is re-created as closely as possible to allow the patient to gain confidence in the staff and to adjust to the new environment. A system of primary care nursing enhances the development of rapport with RCC staff. The primary nurse acts as a patient advocate in weekly team meetings held to discuss patient progress and rehabilitation plans and takes the main responsibility for coordinating patient interactions with other team members.
Adjustments are made on mechanical ventilator settings to achieve adequate ventilation (PaCOz of50-55 mm Hg) and oxygenation (PaOz >60 mm Hg at rest and during activity). The rate of ventilator-delivered breaths is set at 8 or more per minute to improve patient comfort and decrease energy expenditure for breathing, thereby allowing increased ability to perform nonrespiratory activities.
RCC staff and consultants perform baseline evaluations during this phase to allow planning of an individualized rehabilitation program for the patient and subsequent assessment of patient improvement. RCC team members assess upper and lower extremity strength and endurance, ADL performance, social and home situation and leisure time interests. Necessary medical consultations, tests and procedures are performed during this period so that they will not interfere with the rehabilitation process which follows. Neuropsychological test results and psychiatric consultation aid the staff in planning the best methods of teaching patients the skills and knowledge necessary for home care. Behavior modification techniques are developed to meet the needs of each individual.
The patient and family are engaged by the staff and together they set long-range goals, including discharge home. From these long-range goals, short-term goals are developed by the patient and staff. Motivation of the patient is an important part of this phase and is aided by realistic, readily-achievable, short-term goals and providing staff feedback to the patient as goals are successfully accomplished. Motivation is further enhanced by allowing the patient to speak and be mobile. Speech is allowed by partially deflating the tracheostomy cuff and simultaneously increasing the tidal volume delivered by the mechanical ventilator so that the patient may talk during ventilator-delivered inspirations. Mobility is provided as early as possible through the use of mobile ventilators.
We use the term “mobile ventilators” to refer to small mechanical ventilators mounted on motorized wheelchairs; these units are selfcontained, self-powered, and include sufficient oxygen and suction equipment to allow mobility for up to three hours. The most appropriate mobile ventilator for each patient is chosen, depending on the individuals pulmonary mechanics and oxygen requirements. The LP-3 and LP-4 (Life Products Co, Boulder, Colorado), IC-2 (Bio-Med Devices, Stamford, Connecticut), and a sophisticated, custom-designed prototype ventilator have been successfully mounted on motorized wheelchairs in several different configurations.
The battery powered LP-3 and LP-4 units have generally proved adequate for patients with restrictive pulmonary disorders (eg, neuromuscular disease, kyphoscoliosis), but have not always proven satisfactory for patients with chronic obstructive pulmonary disease (COPD) who require supplemental oxygen, long expiratory times and a variable respiratory rate. The gas-powered Bio-Med machine was chosen because of its small size, versatility and ability to ventilate patients with airways obstruction.
Figure 1 shows one of our mobile ventilators incorporating the Bio-Med ventilator, oxygen blender (Medical Products Division, 3M Corp, St Paul, MN), four tanks of compressed air, two tanks of oxygen, and battery powered suction machine (Laerdal Safety Labs, Baywood Park, CA) mounted behind the seat of a motorized wheelchair (Everest and Jennings, Camarillo, CA). Moving the wheelchair batteries forward counterbalances the weight of the gas tanks. The tank carrier tilts backward to facilitate cylinder changes. Custom made high pressure tubing connects the gas tanks in parallel; tanks are connected in pairs with one pressure gauge and regulator for each pair to simplify the apparatus. Although mobile ventilators are an important part of the inpatient rehabilitation program, they are infrequently required at home because some patient mobility without ventilator support has been attained by most patients.
Other important goals of the rehabilitation planning phase are to reduce patient anxiety and allow individuals to control their dyspnea. Anxiety about the RCC environment, personnel and program are allayed by staff reassurance. Specific relaxation techniques, including imagery and audio tapes, are often employed. Patients are taught the factors likely to precipitate dyspneic episodes, how to recognize such situations early, how to treat the underlying factors by themselves, and finally, how to prevent dyspnea. For example, because of the importance of retained tracheobronchial secretions as a cause of increased airways obstruction, patients are taught how to recognize a buildup of secretions prior to the onset of dyspnea and how to suction themselves.
Throughout the rehabilitation process, patients and families are taught respiratory anatomy and physiology; are informed about the patients lung disease and are taught the techniques necessary for self-care. A set of comprehensive patient learning objectives guides the staff in providing patient education.
Complete weaning from ventilatory support is not the primary goal of rehabilitation, but one of the major lessons of this program has been the great utility to patients for periods as short as two hours off the ventilator for mobility and independence in ADL. Weaning is attempted on all ventilator-dependent persons, once they have regained sufficient strength and endurance (as judged by ability to transfer independently from bed to chair, sit in a chair for most of the day, wash independently at the bedside and walk at least 100 feet with ventilatory support), and have an adequate nutritional state (ie, gain of most of the weight lost during hospitalization prior to RCC admission and sufficient oral caloric intake to maintain weight stability). Patients are removed from all ventilatory support for increasing periods of time with appropriate increase in inspired 02 concentration; the technique of weaning by decreasing the rate of intermittent mandatory ventilation is not used. Patients are taught to return promptly to mechanical ventilation when they become dyspneic or fatigued. The weaning process is monitored by arterial blood gases and clinical parameters (pulse, blood pressure, respiratory rate, tidal volume, diaphoresis, skin color, fatigue, and subjective assessment of work of breathing). Weaning is terminated if there is respiratory acidosis (Po2 <7.30), hypoxia (Po2 <50) or significant change in other monitored parameters. Once patients can be without mechanical ventilation for more than one to two hours, they begin to perform activities, such as eating, washing, dressing, toileting or walking, with progressively increasing metabolic requirements. Thus, the purpose of weaning is focused not on permanently removing the patient from the ventilator, but on improving the patient’s capacity for independent ADL, mobility and leisure time activities.
Retraining the patient to perform ADL independently is accomplished by nurses, physical therapists and occupational therapists. Each team member is guided by written general protocols. Physical therapists concentrate on improving lower extremity strength and endurance, while occupational therapists stress energy conservation and concentrate on upper extremity activities such as washing and dressing. Patients walk early in the program while receiving oxygen and mechanical ventilation, or inspirations from a manual resusci-tator. Most patients are able to progress to the point where they tolerate exercise on a stationary bicycle (Fig 2). ADL such as washing and using the toilet are performed in the bathroom, with continued mechanical assistance to ventilation. With improved mobility, speech and endurance, patients are encouraged to increase their recreational and social activities in the hospital.
During the discharge planning phase, patients and families are taught the skills required for independent home care, such as suctioning, tracheostomy care, the use of supplemental oxygen, chest physical therapy and ventilator care. Home support services including homemakers, home health aids, visiting nurses, and respiratory therapists are integrated into discharge planning to allow a smooth transition to the home. The simplest, least costly method of providing ventilatory support in the home is chosen, based upon each patients lung disease, oxygen and ventilatory requirements. Oxygen, ventilators, and other respiratory equipment are provided and maintained in the home by an independent respiratory home care company chosen on the basis of well-defined criteria for routine and emergency services provided by respiratory therapists and equipment support. A visit to the patients home is made by RCC personnel prior to discharge and appropriate modifications are arranged. Prior to final discharge, patients spend one or more half days and then an overnight visit at home to practice techniques learned in the hospital. Follow-up care is provided by RCC pulmonary physicians and respiratory nurse specialist through home and office visits. Our approach to making a smooth transition from hospital to home for these patients has been reviewed.
Patients are characterized according to the number of hours of free time from mechanical ventilation and independence in ADL. The latter is graded on a 4-point scale: maximal (independently performing personal care and ambulation), moderate (requiring aid only for selected activities such as meal preparation and showering), minimal (requiring assistance to organize materials for personal care and to travel away from the bedside) or none (requiring complete or almost complete assistance from others in all aspects of care).
Figure 1. Mobile ventilator. A Bio-Med IC-2 ventilator mounted on a motorized Everest and Jennings wheelchair is used to increase patient mobility and thereby motivation. A—ventilator; В—oxygen blender; С—pressure regulator; D—compressed gas tanks; E— portable suction unit (see text for details).
Figure 2. Ventilator-dependent patient with COPD exercising on a stationary bicycle as part of the rehabilitation program.