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OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
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ADVANCED LUNG DISEASE
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OPTIONS FOR LONG-TERM VENTILATORY SUPPORT Douglas R. Gracey, MD, MS
INDICATIONS FOR LONG-TERM VENT1LATORY SUP PORT
A number of acute and chronic conditions can lead to the development of chronic ventilatory failure, requiring long-term ventilatory support with a mechanical ventilator. The most commonly encountered reasons for such support may include chronic lung diseases, especially chronic obstructive lung disease (COPD); acute and chronic neuromuscular diseases; catastrophic medical or surgical illnesses; surgery in high-risk patients; and trauma. It is usually possible to liberate patients from a ventilator in the acute hospital setting. A significant number of patients, however, remain dependent upon mechanical ventilation for a considerable period after its initiation. Whatever the cause, long-term mechanical ventilator dependence may be required when it is impossible for an individual to maintain adequate alveolar ventilation without assistance either to survive or, in some, to function with an acceptable quality of life. Depending upon the degree to which normal alveolar ventilation is compromised, patients may need continuous or partial mechanical ventilatory support. For most patients in the latter This work was supported in part by Health Care Financing Administration Demonstration Project Grant 29P-99424/1.
situation, nocturnal mechanical ventilation is used to make it possible for them to function without mechanical support during the day. Unfortunately, a certain number of individuals require full-time mechanical ventilation, which has a limited number of options regarding the safest way to sustain it.
EMERGENCE OF VIABLE CARE OPTIONS Over the past decade, attention has been paid to addressing the multifaceted needs of patients undergoing prolonged mechanical ventilation. Special units have been established, both in acute care hospitals and longterm facilities, to treat such patients and continue the process of liberation from the ventilator, if appropriate. A number of those "ventilator units," (e.g., some Veterans Administration facilities) provide chronic domiciliary care for the ventilator-dependent patient and are prepared to provide that care indefinitely. The goal for patients, however, is the transition from a care facility to home. Essential components of the practice of the special care unit, therefore, must be to meet acute care needs and provide education and instruction to patients and caregivers about ventilator operation and airway care prior to their transition to another level of care or to the home envir0nment.l.6, sf 12, 22
From the Division of Pulmonary and Critical Care Medicine, Mayo Clinic, Rochester, Minnesota
CLINICS IN CHEST MEDICINE
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VOLUME 18 * NUMBER 3 SEPTEMBER 1997
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CAUSESOFDEPENDENCEUPON LONG-TERM VENTILATORY SUPPORT
The need for long-term ventilatory support may occur acutely after an event, with or without a pre-existing disease process, or gradually in the patient with a progressive disease involving the respiratory muscles, such as amyotrophic lateral sclerosis (ALS). An example of the acute type patient with no pre-existing lung disease requiring long-term ventilatory support is the individual with high cervical spinal cord trauma and quadriparesis. A stable patient with COPD, on the other hand, might develop a ruptured abdominal aortic aneurysm and undergo successful surgical intervention but become dependent upon mechanical ventilation postoperatively. In some patients with chronic disease, such as COPD, or a progressive neuromuscular disease, it may be possible to delay tracheostomy by using noninvasive mechanical ventilation with a bilevel ventilator and mask. Patients frequently agree to try noninvasive mask ventilation but refuse to consider mechanical ventilation via tracheostomy when the disease worsens or the noninvasive technique is not tolerated. In our experience, the most common causes of protracted ventilator dependence are acute medical or surgical events with subsequent multifactorial conditions contributing to ventilatory failure. This reflects our center’s large base of patients referred by medical and surgical practices. Although most published series have identified a single underlying factor as the cause of ventilator dependency-e.g, COPD-we have found that the cause of ventilator dependency is, indeed, multifactoral in the majority of our patients. A combination of an acute medical or surgical illness with prolonged bed rest; deconditioning; nutritional deficiency; and nontherapeutic medication administration-e.g., anxiolytics, hypnotics, analgesics-frequently leads to or contributes to prolonged ventilator dependence. We therefore have chosen to classify our ventilator-dependent patients using the Gillespie classification, which describes the acute event that led to ventilator dependency It recognizes six categories of venti(Table l).4 lator-dependent patients-(1) uncomplicated acute lung injury (adult respiratory distress syndrome), (2) respiratory failure with multisystem failure, ( 3 ) previous lung disease, (4) trauma, (5) other medical condi-
Table I . GlLLESPlE DIAGNOSTIC CLASSIFICATION Diagnostic Class
Percent
Percent
(1) Acute lung injury (2) Multisystem failure (3) Chronic lung disease (4) Trauma (5) Other medical diagnosis (6) Postoperative Total Patients
3.0 0.0 12.0 1.o 24.0 60.0 206
3.1 20.5 19.2 9.4 26.8 21.o 224
Data from Gracey DR, Hardy DC, Naessens JM, et al: The Mayo ventilator dependency rehabilitation unit: A 5-year experience. Mayo Clin Proc 72:13, 1997 and Latriano 6,McCauley P, Astiz ME, et al: Non-ICU care of hemodynamically stable rnechanically ventilated patients. Chest 109:1591, 1966.
tions-e.g., neuromuscular diseases, heart disease, and so on, and (6) postoperative. Latriano and associates12recently used the Gillespie classification in reporting their experience in caring for stable mechanically ventilated patients on a nonmonitored respiratory care floor in an acute care hospital. Most other reports have used the classification employed by Scheinhorn and colleagueszzin reporting their experience with such patients (Table 2). Such diversity in classification methodology makes comparison of data from various units difficult. During a 5-year period, 60% of 206 newly ventilator-dependent patients cared for in our Ventilator Dependent Rehabilitation Unit (VDRU) were postoperative, Gillespie category six (Table 1).6 OUTCOME-SURVIVAL AND WEANING OR LONG-TERM VENTILATOR SUPPORT
The reported outcome of patients cared for in special ventilator units has been variable when analyzed from the standpoints of hospital survival, weaning success rate, and longterm outcome. The variation is a result of the cause of ventilator dependence, inclusion and exclusion criteria for admission to such units, Table 2. CAUSES OF VENTILATOR DEPENDENCE Category
Patients (n)
Percent
Chronic lung disease Acute lung injury Postoperative Cardiac disease Neurologic disease Other Unable to determine
103 134 99 21 33 21 10
24.5 31.8 23.5 5.0 7.8 5.0 2.4
Adapted from Scheinhorn DJ, Artinian EM, Catlin JL: Weaning from prolonged mechanical ventilation: The experience at a regional weaning center. Chest 105534, 1994; with permission.
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associated medical conditions, age, and availability of alternate sites of care. The latter factor is especially important, as indicated by data from our institution? which show that the hospital mortality rate in patients ventilator dependent for more than 28 days, with multisystem failure patients excluded, was 29% prior to the establishment of a VDRU. After the establishment of the VDRU, the hos0 4, 7 pita1 mortality of that group fell to 7.8/0. The decrease in mortality probably reflects at least two factors-(1) the improved environment (e.g., decrease in noxious sensory stimuli of an intensive care unit [ICU] and emphasis on a structured weaning program, available in a special unit for the ventilator dependent) and (2) the option of long-term care outside the hospital environment, which has become available over the past decade. In prior years, it seems likely that the physician and family elected to withdraw support in the ICU setting when dependence upon mechanical ventilation appeared permanent and no alternatives other than endless ICU care were available. Today, there are an increasing number of options for ventilator patient care beyond the ICU.5 Ultimately, it should always be the choice of the mentally competent patient whether or not to remain on long-term mechanical ventilatory support. That decision depends upon the patient's perception regarding his or her quality of life as well as the impact on the family obligated to provide care to the patient. The health care team therefore must assure that adequate resources are provided to aid in the making of such decisions. In the situation of an incompetent patient, next of kin or designated guardians need to weigh the options and determine future care. In either case, some patients may have more options than others. The availability of competent family care providers may vary widely, as do financial and community resources. In many areas of the United States, no facilities willing to accept chronic ventilator patients exist near the patient's home. That situation is aggravated when skilled care or nursing home beds are constantly full and no additional payment is available from Medicare or state medical assistance programs to ease the high cost burden such patients create. Clearly, there is no incentive to admit chronic ventilator patients to a facility if additional reimbursement is not provided for their care. When facilities are identified that will accept such patients, it is the duty
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of the physician and the health care team to ascertain the quality and competence of the caregivers in that facility, which may involve on-site visits by family and training of future caregivers prior to dismissal of the patient from the ventilator care unit. Predicting whether a patient can be liberated from the ventilator after a period of longterm ventilator dependence is not a precise science. Although parameters for weanability have been published in many papers and textbooks, they are not always reliable indicators of successful outcomes. Our experience with measurement of pulmonary physiologic parameters has not been particularly helpful and is consistent with the experience of Morganroth and colleagues."j In looking at a ventilator score and an adverse factor score, they found that a total score using both was helpful in predicting the long-term ventilator patient's ability to be liberated from mechanical ventilation but that spontaneous ventilatory measurements were not as useful alone. The ventilator score consisted of factors such as inspired oxygen fraction, positive end-expiratory pressure, static and dynamic compliance, minute ventilation delivered by the ventilator, and respiratory rate. The adverse factor score consisted of a wide range of cardiovascular, central nervous system, pharmacologic, and other factors, such as temperature and quality and quantity of airway secretions. Scheinhorn and associatesz3reported an A B G score that they found helpful in predicting the ability to wean patients dependent upon long-term mechanical ventilation in their experience at a regional weaning center. Their score uses the alveolar-arterial (A-a) oxygen gradient, blood urea nitrogen (BUN), and gender to arrive at a percent chance of weaning success. All patients start with a 15% score; 15% is added if the A-a oxygen gradient is less than 145 mm Hg and nothing is added if it is greater. If the BUN is less than 15 mg/dL, 40% is added to the score and, if 15 to 31 mg/dL, 20% is added. Female gender adds lo%, whereas male gender adds nothing. Scheinhornz2reported that 212 of 287 patients (74%)who survived to discharge were liberated from ventilator support. Over a 5-year period, we found that 81% of 206 longterm ventilator-dependent patients were completely weaned from the ventilator.6 Remov'ing those patients from ICUs and stressing rehabilitation are largely responsible for our
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results. Long-term survival in the 92% of our patients who lived to be discharged from the VDRU has been excellent, as shown in Figure 1. Survival at 1, 2, 3, and 4 years postdischarge was 69%, 60%, 56%, and 53%, respectively.
ALTERNATE SITES OF LONG-TERM VENTILATOR CARE
One of the problems constantly faced by ventilator patients who want to return to their home is the suitability of the home environment and the availability of caregivers in that environment. If the patient is only on the ventilator at night, mechanical ventilation is somewhat easier to organize and administer. Caregiver availability, trainability, competence, and adequate community resourcese g , public health nursing, reputable durable medical equipment suppliers, and so on-are keys to successful outcomes of home care. Prior to discharging patients from the special care unit, the health care team must be sure the primary caregiver is well trained and capable of performing all care required. Physicians, nurses, social workers, occupational and physical therapists, dieticians, and clergy must all have input into the home care decision. It is advisable that the home caregiver spend one or two nights with the patient in the special care unit and be observed performing all treatments needed. Frequently, patients are elderly and the primary caregiver is the aged spouse. It therefore is essential
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that the physical and psychosocial needs of the caregiver be assessed before expecting the individual to assume responsibility for the patient beyond the hospital. Unfortunately, in some cases, after assessment, it is obvious that home care for the ventilator patient is not an option because of the inadequacy of one or more components of the optimal plan. In light of the long-term survival of longterm ventilator-dependent patients (53% at 4 years), for most, the commitment made by the family to provide care at home is a major one, and an honest approach by all involved will help the transition from the special care unit to a manageable and safe long-term outcome.
THE COST OF LONG-TERM VENTILATOR PATIENT CARE
Cost may be another determining factor when considering a site for long-term ventilatory care. Scheinhornz2described the cost of care of 287 patients who survived to be transferred from a regional weaning center in Los Angeles, California, to either home or extended care facilities. Patients discharged to either site had either been weaned from the ventilator or were still dependent upon assistance from it. The placement cost for 102 patients who were weaned from mechanical ventilation and went home was $28/day, compared with $275/day for 110 patients who were liberated from the ventilator and went to extended care facilities. Seventy-five
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4
5
Years Figure 1. Observed and expected survival of Mayo Ventilator Dependency Rehabilitation Unit patients at 5 years, based on the Minnesota Life Tables. (From Gracey DR: The Mayo ventilator dependency rehabilitation unit: A five-year experience. Mayo Clin Proc 72:13, 1997; with permission.)
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patients were discharged from the facility ventilator dependent, and 26 of them went home, at a cost of $405/day. Forty-nine ventilator-dependent patients went to extended care facilities on mechanical ventilators, at a cost of $600/day. Sevick and c011eagues~~ recently reported the economic cost of home care for ventilator-assisted individuals. The total cost of care was determined by summing total direct care, medical, and nonmedical care costs of home care and lost wages. The average total cost of care was estimated to be $7642 or $8596 per month and the median, $5,406 or $5,911, depending upon whether nursing care was provided by licensed practical nurses or registered nurses, respectively. The authors conclude that home care of ventilator-assisted individuals is labor-intensive and an economically costly undertaking. Clearly, if families accept the responsibility for providing some or all patient care, the costs can be significantly less. A recent appraisal by family caregivers of the problems they perceived in caring for ventilator-dependent family members at home was r e p ~ r t e dThe . ~ problems the caregivers perceived included those with home health care nurses, insurance coverage, and equipment suppliers. They also felt that lack of preparation, in terms of education provided by health care professionals, limited their ability to manage problems that may occur in a timely and effective manner. The caregivers suggested that health care providers include or expand upon problem-solving strategies in discharge teaching. An additional aspect of cost of care of ventilator-dependent patients is the cost to hospitals under prospective payment. Even though the establishment of Diagnosis-Related Group (DRG) 474 and 475 relieved some of the financial burden to hospitals caring for longterm mechanically ventilated patients, the increasing use of noninvasive positive pressure ventilation (NPPV) has not been addressed by Medicare.yCriner and associates2recently reported the financial liability experienced by his hospital for 27 Medicare patients treated with NPPV for moderately severe respiratory failure. Sixteen of 27 patients were admitted with a variety of non-475 DRGs with reimbursement rates under Medicare Part A ranging from $2673 to $4215. The average deficit per patient when cost of care was compared with hospital reimbursement was $9701. Clearly, newer DRG payment scales that recognize the cost of NPPV must be established
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by Medicare, especially in light of the increasing use of that treatment modality. In the study by Criner and associates: the 1- and 2year survival in the 27 NPPV patients were 74% and 63%, respectively, a testimony to the value of NPPV. NPPV is used most successfully in patients with chronic diseases affecting the respiratory system who experience acute exacerbations of their disease. The use of NPPV to avoid endotracheal intubation has been reported to be successful in COPD with acute exacerbations and acute asthmatic episodes, both with acute progressive arterial carbon dioxide retention and acute respiratory acidosis. The use of NPPV in such situations usually is short-term-1 to 2 days-and requires a fullface mask and some sedation of the patient to obtain cooperation. COPD patients with chronic hypercapnia who are stable do not readily accept NPPV and it is unlikely that they benefit from it as a mode of long-term therapy. Patients with neuromuscular disease and diaphragmatic dysfunction, such as progressive motor disease, are excellent candidates for long-term NPPV. Nocturnal NPPV usually allows such patients to function more effectively during the day and helps keep their daytime hypercapnia under better control, especially if they use supplemental oxygen during the day. NPPV can be provided with either a standard or bilevel ventilator. The interface to the patient is a full-face mask, nasal mask, or Adams’ nasal circuit. Most patients find the full-face mask claustrophobic, but it may be the only way to obtain a seal and an effective tidal volume because of air leaks through an open mouth when asleep. Chin straps to keep the mouth closed are effective in some patients. Nasal masks are best tolerated by most patients if they seal. In addition to the confining feeling that masks initially give most patients, problems with pressure breakdown of the skin of the face and, especially, the bridge of the nose can be serious. Many patients cannot tolerate long-term NPPV because of their inability to tolerate the mask. Frequently, patients accept NPPV as an alternative to ventilation through a tracheostomy tube but refuse to accept tracheostomy if NPPV is not successful. As is true of all new techniques and devices in medicine, NPPV is currently being used for a host of acute and chronic respiratory failure patients with multiple underlying
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causes for their disease. It will probably be several years before we gain adequate experience to know when and when not to use NPPV in the chronic respiratory failure patient. In addition, although medical ICUs are gaining much experience in the use of NPPV to avoid endotracheal intubation, the modality is less likely to be used in surgical or trauma patients who require endotracheal intubation for control of the airway and anesthesia at the beginning of their care. We are beginning to see NPPV used in some of those patients, however, in an attempt to avoid reintubation after a failed trial of endotracheal tube removal.
REHABILITATION OF VENTILATORDEPENDENT PATIENTS In our practice: ventilator-dependent patients had been ventilator dependent for 37 k 22 days (mean k SD) prior to admission to our VDRU from an ICU. Because of the critical nature of their illness, most of the patients had been confined to bed for a period of weeks. Although some had been up in a chair or even walked on a portable ventilator, the vast majority were markedly deconditioned and in need of physical rehabilitation. It has been documented that even healthy middle-aged men, when subjected to 10 days of bed rest, develop decreased exercise capacity that is orthostatically induced because of a loss of antigravity cardiovascular reflexes.ll The loss of antigravity reflexes leads to a decrease in left ventricular end-diastolic volume and produces a decrease in peak oxygen uptake during exertion in the upright position compared with baseline. During supine exercise, an increase in the left ventricular ejection fraction and heart rate largely compensate for that change but are not sufficient to maintain oxygen transport during upright effort after 10 days of bed rest. An acute life-threatening medical or surgical illness may place the patient in a prolonged period of bed rest, often with sedation or muscle relaxants. The resulting loss of muscle strength because of the overall inactivity presents serious obstacles in attempts to ambulate the patient.l0, The rate that muscle strength decreases varies with the duration and degree of immobility. In addition, leg muscles appear to lose strength twice as fast as arm muscles during bed rest.I0 Patients who have not assumed upright posture for over a month frequently are ad-
mitted to our VDRU. Thorough assessment of the patient’s ability to initiate movement-i.e., turning in bed, sitting, and weight-bearing ability-must be part of the initial evaluation by the health care team in the special care unit if they are to develop a plan of care to meet the specific rehabilitation needs of each patient. To restore the antigravity cardiovascular reflexes, we start progressive tilt table exercises twice a day until the patient experiences no hypotension at 80 degrees. From that point, we progress the patient to locking of the knees and, eventually, bearing weight. That process may require 2 to 3 weeks for some individuals. When patients tolerate prolonged upright positioning on the tilt table, we begin to work with sitting posture at the edge of the bed and progress to standing attempts. The use of a low bedside platform provides a firm foundation for planting of the feet and reduces the risk of injury to health care workers assisting the patient from an otherwise high bed perch. Initially, standing attempts require maximum assistance. Techniques of proper body mechanics must be taught to the patient and reinforced with each attempt. A standard walker is very useful at this phase of mobility. When the patient is able to stand holding onto a walker for several minutes, we begin attempts at ambulation, supporting ventilation with a portable mechanical ventilator, if necessary. At most facilities, the standard and accepted assistive device for ambulation is a traditional walker with a ventilator mounted on it. That arrangement may be somewhat awkward and adds weight that the patient must deal with during ambulation. For several years, at Mayo, we have found a padded podium type walker with wheels to be much preferred by patients and staff (Fig. 2). Patients find they can support themselves more securely using their upper extremity muscles and equipment can be attached to the podium walker without fear of dislodgment or an unstable situation occurring. Once adequate lower extremity strength and endurance are developed, the patient graduates to the traditional walker, which encourages posture more conducive to otherwise normal ambulation. Ideally, by that point in the patient’s rehabilitation, he or she tolerates walking without ventilator assistance, and there is no need to encumber a walker with equipment. When our patients are able to tolerate unassisted ventilation during the day, we encour-
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Figure 2. Mayo podium walker can be fitted with pressure cycled ventilator and portable gas source.
age periods of physical and occupational therapy conducted at the centralized physical therapy facility, away from the VDRU. That change allows the patient to experience a new environment and sensory stimuli twice a day. Mastery of skills, such as stair climbing and using a kitchen to cook and bake, and the relearning of skills, such as getting in and out of an automobile, are all needed for the patient to function safely at home. Restoring those skills and the ability to carry out activities formerly taken for granted promote selfconfidence, a sense of accomplishment, and the patient’s realization that he or she can cope in the home environment. Adding an exercycle or treadmill to the rehabilitation program when the individual has demonstrated adequate strength and endurance is an excellent way to provide exercise between scheduled physical therapy appointments. Our overall goal is for the patient to achieve a point at which he or she can carry out normal activities of daily living and be out of the home as desired for periods during the day, even if partial or nocturnal mechanical ventilation is necessary.
Probably the most frustrating thing ventilator patients face is their inability to speak and, with it, the loss of a vital method of communication. The use of vocabulary boards, magic slates, written notes, artificial larynx, and fenestrated tracheostomy tubes are all methods intended to restore communication, but most of them require some form of physical manipulation by the patient. Because many patients have limited fine motor skills, failure to effectively use communication devices leads to further frustration on the part of the patient as well as the health care team. For the past 7 years, we have been able to restore most of our patients’ verbal communication by using a low-profile (tight-to-shaft) cuffed tracheotomy tube. We periodically deflate the tube cuff and occlude the lumen with a rubber stopper or cap with a transtracheal catheter threaded through it for delivery of supplemental oxygen (Fig. 3). Unless the patient has vocal cord dysfunction or upper airway obstruction, most can tolerate periodic ”corking trials” even if so brief as to communicate only a few sentences. If the patient does not tolerate even a short time off the ventilator, the cuff of the tracheostomy tube can be deflated to allow him or her to talk after each inspiratory cycle of the machine. The ability to speak and, thereby, communicate, frequently helps anxious patients focus less on their anxiety, facilitating weaning trials. Occlusion of the low-profile cuff tube is preferred to the same procedure done on a standard, floppy, high-volume, low-pressure cuff tracheostomy tube (Fig. 4). A potential danger of airway obstruction may be encountered because of the bulk of the deflated cuff impeding air flow around it and the need for a patient to cough vigorously to clear mucus over the cuff and up the trachea. Fenestrated tracheotomy tubes are available that permit patients to breathe and speak via their upper airway when the inner cannula of the tube is removed and the cannula occluded. If secretions occlude the fenestration, as frequently occurs, however, the patient may experience acute distress because of the same situation as just noted with the floppy cuff. Other tracheotomy tubes, such as the transairway laryngeal control tube, have been developed to facilitate patient communication
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Figure 3. Tracheostomy tube with low profile cuff (tight to shaft) and occlusive cap, which is used when the cuff is deflated. (Courtesy of Bivona Medical Technologies, Gary, IN.)
(Fig. 5). That device uses a pilot tube above the tracheotomy tube cuff and below the vocal cords through which one can provide a source of gas flow, which allows the patient to vocalize. In our experience, this tube rarely leads to adequate patient speech and communication. Measured pressure within the lowprofile cuff is found to be higher than in the floppy cuffs, which causes us concern about the potential for tracheal wall damage if such tubes are used for extended periods of time with the cuff inflated. The cuffs are permeable
to air, however; subsequently, air leaks out and cuff pressures decrease, but that also leads to leaks around the cuff when on the ventilator. Practitioners therefore find that cuff seals can frequently be maintained only by inflating the cuff with normal saline. By the time we begin using the low-profile cuff tube, the patient is able to tolerate periods off the ventilator and extended occlusion trials with the cuff deflated, thereby decreasing the potential for tracheal tissue damage. In our 7 years of using low-profile cuff tubes we have
Figure 4. Tracheostomy tube with high-volume, low-pressure cuff with cuff deflated. (Courtesy of Mallinckrodt Medical TIP, Irvine, CA.)
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Figure 5. Transairway laryngeal control tracheostomy tube. Multiple vents in the shaft proximal to the cuff allow a gas source to flow up through the vocal cords allowing speech with the cuff inflated. (Courtesy of Implant Technologies, Inc., Minneapolis, MN.)
not seen increased incidence of tracheal wall damage. One additional option used by many medical centers to aid speech is the Passy-Muir unidirectional valve.13 It works well for selected patients. Another very common problem experienced in the ventilator-dependent patient population is swallowing dysfunction. A very high percentage of patients aspirate when given liquids or soft or solid foods by mouth. The association between tracheostomy and mechanical ventilation and swallowing dysfunction has never been well understood. Prolonged or repeated translaryngeal intubation, age, poor swallowing synchronization while on a mechanical ventilator, nutritional depletion, the effects of tracheostomy on the swallow mechanism, and sedation are a few of the factors that have been suggested as contributing to aspiration. Advanced age has been shown to be associated with an increased incidence of dysphagia and total swallowing duration, which does not necessarily lead to aspiration.*O It is possible that advanced age, in association with other factors, may lead to an increased incidence of aspiration. Disturbances of laryngeal elevation and closure have been den A recent study scribed post-tracheo~tomy.’~, by Tolep and associatesz7of 35 patients receiving mechanical ventilation showed that results of a bedside swallowing evaluation
were abnormal in 31% of the patients with a neuromuscular disorder and in 37% of the patients without neuromuscular disorders. When a modified barium swallow with video fluoroscopy was performed, however, results were abnormal in an astounding 85% of patients with and 80% of patients without a neuromuscular disorder. Clearly, mechanically ventilated tracheostomized patients have an extremely high incidence of swallowing disorders, which may greatly complicate their already significant respiratory disorder. Tolep and associate~’~ also found that direct laryngoscopy frequently revealed important abnormalities that contributed to the swallowing dysfunction. Adequate nutritional support is extremely important for ventilator-dependent patients, who are usually malnourished, stressed by the metabolic response to injury, immobilized, and in need of respiratory and general body muscle strengthening and endurance training. Prolonged use of parenteral nutrition is very expensive. The long-term use of nasal duodenal/ jejunal feeding tubes is detrimental to patient comfort and fraught with problems in keeping such tubes in place. For those reasons, demonstration of significant and prolonged swallowing dysfunction is an indication for use of a percutaneous endoscopic gastrostomy feeding tube, placed with the aid of a fiberoptic endoscope. If the patient’s gut is functioning, he or she can be
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fed enterally, with intermittent gravity feedings or nocturnally if rehabilitation activities during the day make tube feedings undesirable. The importance of nutritional support must not be underestimated in ventilator-dependent patients.I5 Although much has been made in the critical care nutrition literature of the value of high fat, low carbohydrate enteral feedings in aiding in liberation of ventilator dependent patients by reducing their carbon dioxide production, there is little in the literature to support that theory. Van den Berg and associatesz8 concluded that, although high fat, low carbohydrate enteral feedings reduce the respiratory quotient values in ventilated patients, with a decrease in carbon dioxide production, that had no effect on the arterial carbon dioxide tension during weaning from the ventilator. EDUCATING THE PATIENT AND THE FAMILY
Once the decision is made to send a prolonged ventilator-dependent patient home, it is essential the health care team provide the patient and caregivers with the knowledge needed to administer care and cope with the sometimes difficult task they are undertaking. The patient has to feel comfortable and confident with the caregivers and they, in turn, must develop self-confidence in their role, if success at home is to be achieved. The health care team must appreciate the feelings of uncertainty both patient and caregiver may have in assuming roles very different from those that existed prior to the patient’s illness.25 MatthisI4 pointed out that societal expectations in the United States demand that families provide the greatest share of care for the disabled. The realities of not being able to find alternative sites of ventilator-dependent patient care in the area also may lead to the need for home caregivers, usually family members. Unless families are prepared for their caregiving jobs, those societal demands are likely to become less ~iab1e.l~ Sevick and associatesz5reported a study of caregivers for 27 home-based ventilator-dependent patients who responded to a questionnaire about their perceptions of their experience. The primary caregivers reported that the needs of the patients are extensive and that they spend an average of 8.4 hours/ day caring for their family member. Individu-
als cared for in the home may require considerable assistance with activities of daily living, and many require total care in many functional domains. Home caregivers are responsible for knowing how to operate ventilators and trouble-shoot problems as well as resolving problems with artificial airways. Despite those findings, the respondents did not perceive home placement to be a negative experience. In another study of caregiver reactions to their roles and experiences, Smith and associatesZ6studied 20 caregivers and adult patients dependent on mechanical ventilation at home. They reported that the caregivers, who were all relatives, spent 7.3 hours/day in direct patient care, with little assistance from extended family or professionals. Overall family functioning was perceived as satisfactory by both patients and caregivers. A threephase teaching program sensitive to individual learning needs was preferred. A variety of coping strategies were used by families to manage home mechanical ventilation, including problem solving and mobilizing help from friends, extended family, community, or church. In a study of 13 caregivers of ventilatordependent patients by Findeis and associa t e ~ caregivers ,~ reported feeling moderate levels of burden and negative impacts of caregiving but a positive sense of mastery and satisfaction with their role. Decisions on home care options occasionally are influenced by the type of treatments patients require and caregivers are expected to provide. As noted previously, many patients with chronic respiratory failure will agree to try noninvasive mask ventilationbut do not want further intervention if it fails or if they deteriorate to the point that noninvasive ventilation is no longer effective. In a survey of ALS patients in northern Illinois, for example, Moss and associates*’ found that fewer than 10% of patients had chosen home mechanical ventilation. They suggest that cost; insurance coverage; and patients’, families’, and physicians’ negative attitudes toward home mechanical ventilation may be important factors. ALS patients are a perfect example of individuals who require a good deal of assistive care at home, with increasing demands on the caregiver as the disease progresses. Moss17 reported that families caring for ALS patients relate experiencing major burdens and only half would choose similar home care options for themselves. Moss and
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
as~ociates’~ also reported that the mean yearly cost for patients on home mechanical ventilation 24 hours/day was $153,252. For home ventilator care to be successful, without overwhelming the family, the health care team providing teaching must be aware of the caregivers’ ability and readiness to learn and must be sensitive to the concerns and fears they experience. It is the duty of the team to assist the family in seeking resources in the community that can assist them, if needed, and to have those resources mobilized before the patient is dismissed from the hospital. Home nursing agency or public health nurse visits may be extremely useful in assisting the caregiver with establishing routines of patient care, as well as providing periodic examination of the patient’s nutritional, physical, and psychosocia1 status. Our VDRU nurses and respiratory therapists routinely call the patient’s home on the day of arrival and on a regular basis thereafter. The follow-up determines patient status, whether proper supplies were available upon the patient’s return home, and whether there are questions or immediate problems, and establishes a resource link. Caregivers are instructed to call the VDRU 24 hourslday, 7 days/week, if they cannot solve a particular problem or have questions about any aspect of the patient’s care. The VDRU keeps a copy of the patient’s history summary and home-going care plan, to which on-duty personnel can refer if calls are placed to the unit. With home care becoming an increasing choice of alternative site care, the health care worker is often faced with plans that are extensive and relatively complicated, and it is imperative that meticulous attention is paid to detail in all aspects of the ~ l a n . To 2 ~ assure that occurs, our VDRU has developed a comprehensive checklist of the details that require attention (Appendix). The checklist assures that teaching is done in the following areas: required forms and prescriptions, all components of respiratory care, standard and bilevel ventilator operation, oxygen equipment and safety, medication information, nutrition plans and method of administration, fluid balance assessment, activity requirements, and emergency care. In addition, patients are given written instructions on many of the aforementioned issues, as appropriate. Meeting patients’ acute needs and preparing them and their families for what lies ahead is truly a team effort. No patient or
573
family should be excluded from decisions that will affect their life and, above all, no patient should go home unless those who will be involved in his or her care are properly trained and competent. References 1. Criner GJ, Kreimer DT, Pidlacan L: Patient outcome following prolonged mechanical ventilation via tracheostomy [abstract]. Am Rev Respir Dis 147874, 1993 2. Criner GJ, Kreimer DT, Tomaselli M, et al: Clinical investigations in critical care: Financial implications of noninvasive positive pressure ventilation (NPPV). Chest 108:475, 1995 3. Findeis A, Larson JL, Gallo A, et al: Caring for individuals using home ventilators: An appraisal by family caregivers. Rehabilitation Nursing 19:6, 1994 4. Gillespie DJ, Marsh HM, Divertie MB, et a1 Clinical outcome of respiratory failure in patients requiring prolonged mechanical ventilation. Chest 90365,1986 5. Gracey DR Ventilator care beyond the intensive care unit. Mavo Clin Proc 70:595.1995 6. Gracey DR, Hardy DC, Naessens JM, et al: The Mayo ventilator dependency rehabilitation unit: A 5-year experience. Mayo Clin Proc 72:13, 1997 7. Gracey DR, Naessens JM, Krishan I, et al: Hospital and posthospital survival in patients mechanically ventilated for more than 29 days. Chest 101:211,1992 8. Gracey DR, Naessens JM, Viggiano RW, et al: Outcome of patients cared for in a ventilator-dependent unit in a general hospital. Chest 107494, 1995 9. Gracey DR, Nobrega FT, Naessens JM: Financial implications of prolonged ventilator care under DRGs 474 and 475. Chest 91:424, 1987 10. Greenleaf JE, Van Beaumont W, Convertino VA, et al: Handgrip and general muscular strength and endurance during prolonged bedrest with isometric and isotonic leg exercise training. Aviat Space Environ Med 54:696, 1983 11. Hung J, Goldwater D, Covertino VA, et al: Mechanism for decreased exercise capacity after bed rest in normal middle aged men. Am J Cardiol 51:344, 1983 12. Latriano B, McCauley P, Astiz ME, et al: Non-ICU care of hemodynamically stable mechanically ventilated patients. Chest 109:1591, 1996 13. Manzano JL, Lubillo S, Henriquez D, et al: Verbal communication of ventilator-dependent patients. Crit Care Med 21:512, 1992 14. Matthis E: Family caregivers want education for their caregiving roles. Home Health Care Nurse 10:19, 1992 15. McMahon MM, Benotti PN, Bistrian BR A clinical application of exercise physiology and nutritional support for the mechanically ventilated patient. JPEN J Parenter Enteral Nutr 14:538, 1990 16. Morganroth ML, Morganroth JL, Nett LM, et al: Criteria for weaning from prolonged mechanical ventilation. Arch Intern Med 144:1012, 1984 17. Moss AH, Casey P, Stocking CB, et al: Home ventilation for amyotrophic lateral sclerosis patients: Outcomes, costs, and patient, family, and physician attitudes. Neurology 43:438, 1993 18. Muller EA: Influence of training and inactivity on muscle strength. Arch Phys Med Rehabil51:449, 1970
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19. Nash M: Swallowing problems in tracheotomized patient. Otolaryngol Clin North Am 21:701, 1988 20. Robbins J, Hamilton JW, Lof GL, et a1 Oropharyngeal swallowing in normal adults of different ages. Gastroenterology 103:823, 1992 21. Sasaki CT, Suzuki M, Hoiuchi M, et al: The effect of tracheostomy on the laryngeal closure reflex. Laryngoscope 871428,1977 22. Scheinhorn DJ, Artinian BM, Catlin JL: Weaning from prolonged mechanical ventilation: The experience at a regional weaning center. Chest 105:534, 1994 23. Scheinhom DJ, Hassenpflug M, Artinian BM, et al: Predictors of weaning after 6 weeks of mechanical ventilation. Chest 107500, 1995 24. Sevick MA, Kamlet MS, Hoffman LA, et al: Economic cost of home-based care for ventilator-assisted individuals. Chest 109:1597, 1996
25. Sevick MA, Sereika S, Matthews JT, et al: Homebased ventilator-dependent patients: Measurement of the emotional aspects of home caregiving. Heart Lung 23269, 1994 26. Smith CE, Mayer LS, Perkins SB, et al: Caregiver learning needs and reactions to managing home mechanical ventilation. Heart Lung 23:157, 1994 27. Tolep K, Getch CL, Criner GJ: Swallowing dysfunction in patients receiving prolonged mechanical ventilation. Chest 109:167, 1996 28. van den Berg B, Bjogaard JM, Hop WC: High fat, low carbohydrate, enteral feeding in patients weaning from the ventilator. Intensive Care Med 20470, 1994 29. Weeks SK: What are the educational needs of prospective family caregivers of newly disabled adults? Rehabilitation Nursing 20:256, 1995
Address reprint requests to Douglas R. Gracey, MD, MS Division of Pulmonary and Critical Care Medicine Mayo Clinic 200 First Street, SW Rochester, MN 55905
APPENDIX
Home-Going Checklist Chronic Ventilator Rehabilitation Unit -0
al
c
al Cl
Forms Physician-signed oxygen certification sheet Nursing referral Physicians' dismissal summary Physical therapy referral Nutrition referral Occupational therapy referral Teaching instructional books
$2 05
n o
0 0
n o o n
0 0 0 0
o n n o
0 0 0 0
Written medication instructions Disease-specific pamphlets Discharge Ventilator/CPAP/BiPAP Operation" Power sources Power switch Control panel Oxygen supply connection Tubing connections Humidifier Oxygen flow rate Mode Alarms Rate Volume Mask fit Cleaning Transport Trouble-shooting Emergency and/or resources
o n n o n o
o n
0 0
Respiratory Teaching Respiratory anatomy Tracheostomy tube Metal tube cleaning Oxygen equipment Ventilation techniques Tracheostomy suctioning Lavage technique Stoma care Cuff inflation techniques Tracheostomy occlusion procedure Transtracheal oxygen Tracheostomy tube change Inhalation therapy Chest physiotherapy Signs/symptoms of respiratory infection
n o n o n u o n
Oxygen Equipment Tanks Liquid Transtracheal Nasal cannula Concentrator Safety
o 0 o o o
Medication Verbal instruction completed Written information Written schedule Patient received prescriptions Patient received medications
0 0 0 0
n 0 n n n
Nutrition Tube Feeding Verbal instruction Written instructions Caregiver returned demonstration Checking for residual Setting up feeding equipment Measuring and hanging tube feeding Flushing the set Runs feeding at correct rate Cleans equipment Resource for feeding and supplies Oral Feeding Verbal instruction Written instructions Nutrition referral
n o 0 0 n o
Wound and Skin/lncision Verbal teaching Written information Return demonstrations of care of dressing
n o n o o n
Activity Instructed on use of assist devices Activity program instruction Travel with oxygen
0 0
n o o n 0 0
o n
Emergency Ventilator mechanical failure Power outage Tracheostomy tube dislodgment Mucous plug Tracheostomy stoma bleeding
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0 0 0 0 'CPAP
0 0 0 0
Fluids Signs/symptoms dehydration Signs/symptoms fluid overload =
continuous positive airway pressure; BiPAP
=
Respiratory arrest Cardiac arrest
bilevel positive airway pressure
ADVANCED LUNG DISEASE
+ .20
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT Douglas R. Gracey, MD, MS
INDICATIONS FOR LONG-TERM VENT1LATORY SUP PORT
A number of acute and chronic conditions can lead to the development of chronic ventilatory failure, requiring long-term ventilatory support with a mechanical ventilator. The most commonly encountered reasons for such support may include chronic lung diseases, especially chronic obstructive lung disease (COPD); acute and chronic neuromuscular diseases; catastrophic medical or surgical illnesses; surgery in high-risk patients; and trauma. It is usually possible to liberate patients from a ventilator in the acute hospital setting. A significant number of patients, however, remain dependent upon mechanical ventilation for a considerable period after its initiation. Whatever the cause, long-term mechanical ventilator dependence may be required when it is impossible for an individual to maintain adequate alveolar ventilation without assistance either to survive or, in some, to function with an acceptable quality of life. Depending upon the degree to which normal alveolar ventilation is compromised, patients may need continuous or partial mechanical ventilatory support. For most patients in the latter This work was supported in part by Health Care Financing Administration Demonstration Project Grant 29P-99424/1.
situation, nocturnal mechanical ventilation is used to make it possible for them to function without mechanical support during the day. Unfortunately, a certain number of individuals require full-time mechanical ventilation, which has a limited number of options regarding the safest way to sustain it.
EMERGENCE OF VIABLE CARE OPTIONS Over the past decade, attention has been paid to addressing the multifaceted needs of patients undergoing prolonged mechanical ventilation. Special units have been established, both in acute care hospitals and longterm facilities, to treat such patients and continue the process of liberation from the ventilator, if appropriate. A number of those "ventilator units," (e.g., some Veterans Administration facilities) provide chronic domiciliary care for the ventilator-dependent patient and are prepared to provide that care indefinitely. The goal for patients, however, is the transition from a care facility to home. Essential components of the practice of the special care unit, therefore, must be to meet acute care needs and provide education and instruction to patients and caregivers about ventilator operation and airway care prior to their transition to another level of care or to the home envir0nment.l.6, sf 12, 22
From the Division of Pulmonary and Critical Care Medicine, Mayo Clinic, Rochester, Minnesota
CLINICS IN CHEST MEDICINE
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VOLUME 18 * NUMBER 3 SEPTEMBER 1997
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CAUSESOFDEPENDENCEUPON LONG-TERM VENTILATORY SUPPORT
The need for long-term ventilatory support may occur acutely after an event, with or without a pre-existing disease process, or gradually in the patient with a progressive disease involving the respiratory muscles, such as amyotrophic lateral sclerosis (ALS). An example of the acute type patient with no pre-existing lung disease requiring long-term ventilatory support is the individual with high cervical spinal cord trauma and quadriparesis. A stable patient with COPD, on the other hand, might develop a ruptured abdominal aortic aneurysm and undergo successful surgical intervention but become dependent upon mechanical ventilation postoperatively. In some patients with chronic disease, such as COPD, or a progressive neuromuscular disease, it may be possible to delay tracheostomy by using noninvasive mechanical ventilation with a bilevel ventilator and mask. Patients frequently agree to try noninvasive mask ventilation but refuse to consider mechanical ventilation via tracheostomy when the disease worsens or the noninvasive technique is not tolerated. In our experience, the most common causes of protracted ventilator dependence are acute medical or surgical events with subsequent multifactorial conditions contributing to ventilatory failure. This reflects our center’s large base of patients referred by medical and surgical practices. Although most published series have identified a single underlying factor as the cause of ventilator dependency-e.g, COPD-we have found that the cause of ventilator dependency is, indeed, multifactoral in the majority of our patients. A combination of an acute medical or surgical illness with prolonged bed rest; deconditioning; nutritional deficiency; and nontherapeutic medication administration-e.g., anxiolytics, hypnotics, analgesics-frequently leads to or contributes to prolonged ventilator dependence. We therefore have chosen to classify our ventilator-dependent patients using the Gillespie classification, which describes the acute event that led to ventilator dependency It recognizes six categories of venti(Table l).4 lator-dependent patients-(1) uncomplicated acute lung injury (adult respiratory distress syndrome), (2) respiratory failure with multisystem failure, ( 3 ) previous lung disease, (4) trauma, (5) other medical condi-
Table I . GlLLESPlE DIAGNOSTIC CLASSIFICATION Diagnostic Class
Percent
Percent
(1) Acute lung injury (2) Multisystem failure (3) Chronic lung disease (4) Trauma (5) Other medical diagnosis (6) Postoperative Total Patients
3.0 0.0 12.0 1.o 24.0 60.0 206
3.1 20.5 19.2 9.4 26.8 21.o 224
Data from Gracey DR, Hardy DC, Naessens JM, et al: The Mayo ventilator dependency rehabilitation unit: A 5-year experience. Mayo Clin Proc 72:13, 1997 and Latriano 6,McCauley P, Astiz ME, et al: Non-ICU care of hemodynamically stable rnechanically ventilated patients. Chest 109:1591, 1966.
tions-e.g., neuromuscular diseases, heart disease, and so on, and (6) postoperative. Latriano and associates12recently used the Gillespie classification in reporting their experience in caring for stable mechanically ventilated patients on a nonmonitored respiratory care floor in an acute care hospital. Most other reports have used the classification employed by Scheinhorn and colleagueszzin reporting their experience with such patients (Table 2). Such diversity in classification methodology makes comparison of data from various units difficult. During a 5-year period, 60% of 206 newly ventilator-dependent patients cared for in our Ventilator Dependent Rehabilitation Unit (VDRU) were postoperative, Gillespie category six (Table 1).6 OUTCOME-SURVIVAL AND WEANING OR LONG-TERM VENTILATOR SUPPORT
The reported outcome of patients cared for in special ventilator units has been variable when analyzed from the standpoints of hospital survival, weaning success rate, and longterm outcome. The variation is a result of the cause of ventilator dependence, inclusion and exclusion criteria for admission to such units, Table 2. CAUSES OF VENTILATOR DEPENDENCE Category
Patients (n)
Percent
Chronic lung disease Acute lung injury Postoperative Cardiac disease Neurologic disease Other Unable to determine
103 134 99 21 33 21 10
24.5 31.8 23.5 5.0 7.8 5.0 2.4
Adapted from Scheinhorn DJ, Artinian EM, Catlin JL: Weaning from prolonged mechanical ventilation: The experience at a regional weaning center. Chest 105534, 1994; with permission.
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
associated medical conditions, age, and availability of alternate sites of care. The latter factor is especially important, as indicated by data from our institution? which show that the hospital mortality rate in patients ventilator dependent for more than 28 days, with multisystem failure patients excluded, was 29% prior to the establishment of a VDRU. After the establishment of the VDRU, the hos0 4, 7 pita1 mortality of that group fell to 7.8/0. The decrease in mortality probably reflects at least two factors-(1) the improved environment (e.g., decrease in noxious sensory stimuli of an intensive care unit [ICU] and emphasis on a structured weaning program, available in a special unit for the ventilator dependent) and (2) the option of long-term care outside the hospital environment, which has become available over the past decade. In prior years, it seems likely that the physician and family elected to withdraw support in the ICU setting when dependence upon mechanical ventilation appeared permanent and no alternatives other than endless ICU care were available. Today, there are an increasing number of options for ventilator patient care beyond the ICU.5 Ultimately, it should always be the choice of the mentally competent patient whether or not to remain on long-term mechanical ventilatory support. That decision depends upon the patient's perception regarding his or her quality of life as well as the impact on the family obligated to provide care to the patient. The health care team therefore must assure that adequate resources are provided to aid in the making of such decisions. In the situation of an incompetent patient, next of kin or designated guardians need to weigh the options and determine future care. In either case, some patients may have more options than others. The availability of competent family care providers may vary widely, as do financial and community resources. In many areas of the United States, no facilities willing to accept chronic ventilator patients exist near the patient's home. That situation is aggravated when skilled care or nursing home beds are constantly full and no additional payment is available from Medicare or state medical assistance programs to ease the high cost burden such patients create. Clearly, there is no incentive to admit chronic ventilator patients to a facility if additional reimbursement is not provided for their care. When facilities are identified that will accept such patients, it is the duty
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of the physician and the health care team to ascertain the quality and competence of the caregivers in that facility, which may involve on-site visits by family and training of future caregivers prior to dismissal of the patient from the ventilator care unit. Predicting whether a patient can be liberated from the ventilator after a period of longterm ventilator dependence is not a precise science. Although parameters for weanability have been published in many papers and textbooks, they are not always reliable indicators of successful outcomes. Our experience with measurement of pulmonary physiologic parameters has not been particularly helpful and is consistent with the experience of Morganroth and colleagues."j In looking at a ventilator score and an adverse factor score, they found that a total score using both was helpful in predicting the long-term ventilator patient's ability to be liberated from mechanical ventilation but that spontaneous ventilatory measurements were not as useful alone. The ventilator score consisted of factors such as inspired oxygen fraction, positive end-expiratory pressure, static and dynamic compliance, minute ventilation delivered by the ventilator, and respiratory rate. The adverse factor score consisted of a wide range of cardiovascular, central nervous system, pharmacologic, and other factors, such as temperature and quality and quantity of airway secretions. Scheinhorn and associatesz3reported an A B G score that they found helpful in predicting the ability to wean patients dependent upon long-term mechanical ventilation in their experience at a regional weaning center. Their score uses the alveolar-arterial (A-a) oxygen gradient, blood urea nitrogen (BUN), and gender to arrive at a percent chance of weaning success. All patients start with a 15% score; 15% is added if the A-a oxygen gradient is less than 145 mm Hg and nothing is added if it is greater. If the BUN is less than 15 mg/dL, 40% is added to the score and, if 15 to 31 mg/dL, 20% is added. Female gender adds lo%, whereas male gender adds nothing. Scheinhornz2reported that 212 of 287 patients (74%)who survived to discharge were liberated from ventilator support. Over a 5-year period, we found that 81% of 206 longterm ventilator-dependent patients were completely weaned from the ventilator.6 Remov'ing those patients from ICUs and stressing rehabilitation are largely responsible for our
+
+
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results. Long-term survival in the 92% of our patients who lived to be discharged from the VDRU has been excellent, as shown in Figure 1. Survival at 1, 2, 3, and 4 years postdischarge was 69%, 60%, 56%, and 53%, respectively.
ALTERNATE SITES OF LONG-TERM VENTILATOR CARE
One of the problems constantly faced by ventilator patients who want to return to their home is the suitability of the home environment and the availability of caregivers in that environment. If the patient is only on the ventilator at night, mechanical ventilation is somewhat easier to organize and administer. Caregiver availability, trainability, competence, and adequate community resourcese g , public health nursing, reputable durable medical equipment suppliers, and so on-are keys to successful outcomes of home care. Prior to discharging patients from the special care unit, the health care team must be sure the primary caregiver is well trained and capable of performing all care required. Physicians, nurses, social workers, occupational and physical therapists, dieticians, and clergy must all have input into the home care decision. It is advisable that the home caregiver spend one or two nights with the patient in the special care unit and be observed performing all treatments needed. Frequently, patients are elderly and the primary caregiver is the aged spouse. It therefore is essential
2ol ".
0
i
that the physical and psychosocial needs of the caregiver be assessed before expecting the individual to assume responsibility for the patient beyond the hospital. Unfortunately, in some cases, after assessment, it is obvious that home care for the ventilator patient is not an option because of the inadequacy of one or more components of the optimal plan. In light of the long-term survival of longterm ventilator-dependent patients (53% at 4 years), for most, the commitment made by the family to provide care at home is a major one, and an honest approach by all involved will help the transition from the special care unit to a manageable and safe long-term outcome.
THE COST OF LONG-TERM VENTILATOR PATIENT CARE
Cost may be another determining factor when considering a site for long-term ventilatory care. Scheinhornz2described the cost of care of 287 patients who survived to be transferred from a regional weaning center in Los Angeles, California, to either home or extended care facilities. Patients discharged to either site had either been weaned from the ventilator or were still dependent upon assistance from it. The placement cost for 102 patients who were weaned from mechanical ventilation and went home was $28/day, compared with $275/day for 110 patients who were liberated from the ventilator and went to extended care facilities. Seventy-five
3
2
4
5
Years Figure 1. Observed and expected survival of Mayo Ventilator Dependency Rehabilitation Unit patients at 5 years, based on the Minnesota Life Tables. (From Gracey DR: The Mayo ventilator dependency rehabilitation unit: A five-year experience. Mayo Clin Proc 72:13, 1997; with permission.)
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
patients were discharged from the facility ventilator dependent, and 26 of them went home, at a cost of $405/day. Forty-nine ventilator-dependent patients went to extended care facilities on mechanical ventilators, at a cost of $600/day. Sevick and c011eagues~~ recently reported the economic cost of home care for ventilator-assisted individuals. The total cost of care was determined by summing total direct care, medical, and nonmedical care costs of home care and lost wages. The average total cost of care was estimated to be $7642 or $8596 per month and the median, $5,406 or $5,911, depending upon whether nursing care was provided by licensed practical nurses or registered nurses, respectively. The authors conclude that home care of ventilator-assisted individuals is labor-intensive and an economically costly undertaking. Clearly, if families accept the responsibility for providing some or all patient care, the costs can be significantly less. A recent appraisal by family caregivers of the problems they perceived in caring for ventilator-dependent family members at home was r e p ~ r t e dThe . ~ problems the caregivers perceived included those with home health care nurses, insurance coverage, and equipment suppliers. They also felt that lack of preparation, in terms of education provided by health care professionals, limited their ability to manage problems that may occur in a timely and effective manner. The caregivers suggested that health care providers include or expand upon problem-solving strategies in discharge teaching. An additional aspect of cost of care of ventilator-dependent patients is the cost to hospitals under prospective payment. Even though the establishment of Diagnosis-Related Group (DRG) 474 and 475 relieved some of the financial burden to hospitals caring for longterm mechanically ventilated patients, the increasing use of noninvasive positive pressure ventilation (NPPV) has not been addressed by Medicare.yCriner and associates2recently reported the financial liability experienced by his hospital for 27 Medicare patients treated with NPPV for moderately severe respiratory failure. Sixteen of 27 patients were admitted with a variety of non-475 DRGs with reimbursement rates under Medicare Part A ranging from $2673 to $4215. The average deficit per patient when cost of care was compared with hospital reimbursement was $9701. Clearly, newer DRG payment scales that recognize the cost of NPPV must be established
567
by Medicare, especially in light of the increasing use of that treatment modality. In the study by Criner and associates: the 1- and 2year survival in the 27 NPPV patients were 74% and 63%, respectively, a testimony to the value of NPPV. NPPV is used most successfully in patients with chronic diseases affecting the respiratory system who experience acute exacerbations of their disease. The use of NPPV to avoid endotracheal intubation has been reported to be successful in COPD with acute exacerbations and acute asthmatic episodes, both with acute progressive arterial carbon dioxide retention and acute respiratory acidosis. The use of NPPV in such situations usually is short-term-1 to 2 days-and requires a fullface mask and some sedation of the patient to obtain cooperation. COPD patients with chronic hypercapnia who are stable do not readily accept NPPV and it is unlikely that they benefit from it as a mode of long-term therapy. Patients with neuromuscular disease and diaphragmatic dysfunction, such as progressive motor disease, are excellent candidates for long-term NPPV. Nocturnal NPPV usually allows such patients to function more effectively during the day and helps keep their daytime hypercapnia under better control, especially if they use supplemental oxygen during the day. NPPV can be provided with either a standard or bilevel ventilator. The interface to the patient is a full-face mask, nasal mask, or Adams’ nasal circuit. Most patients find the full-face mask claustrophobic, but it may be the only way to obtain a seal and an effective tidal volume because of air leaks through an open mouth when asleep. Chin straps to keep the mouth closed are effective in some patients. Nasal masks are best tolerated by most patients if they seal. In addition to the confining feeling that masks initially give most patients, problems with pressure breakdown of the skin of the face and, especially, the bridge of the nose can be serious. Many patients cannot tolerate long-term NPPV because of their inability to tolerate the mask. Frequently, patients accept NPPV as an alternative to ventilation through a tracheostomy tube but refuse to accept tracheostomy if NPPV is not successful. As is true of all new techniques and devices in medicine, NPPV is currently being used for a host of acute and chronic respiratory failure patients with multiple underlying
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causes for their disease. It will probably be several years before we gain adequate experience to know when and when not to use NPPV in the chronic respiratory failure patient. In addition, although medical ICUs are gaining much experience in the use of NPPV to avoid endotracheal intubation, the modality is less likely to be used in surgical or trauma patients who require endotracheal intubation for control of the airway and anesthesia at the beginning of their care. We are beginning to see NPPV used in some of those patients, however, in an attempt to avoid reintubation after a failed trial of endotracheal tube removal.
REHABILITATION OF VENTILATORDEPENDENT PATIENTS In our practice: ventilator-dependent patients had been ventilator dependent for 37 k 22 days (mean k SD) prior to admission to our VDRU from an ICU. Because of the critical nature of their illness, most of the patients had been confined to bed for a period of weeks. Although some had been up in a chair or even walked on a portable ventilator, the vast majority were markedly deconditioned and in need of physical rehabilitation. It has been documented that even healthy middle-aged men, when subjected to 10 days of bed rest, develop decreased exercise capacity that is orthostatically induced because of a loss of antigravity cardiovascular reflexes.ll The loss of antigravity reflexes leads to a decrease in left ventricular end-diastolic volume and produces a decrease in peak oxygen uptake during exertion in the upright position compared with baseline. During supine exercise, an increase in the left ventricular ejection fraction and heart rate largely compensate for that change but are not sufficient to maintain oxygen transport during upright effort after 10 days of bed rest. An acute life-threatening medical or surgical illness may place the patient in a prolonged period of bed rest, often with sedation or muscle relaxants. The resulting loss of muscle strength because of the overall inactivity presents serious obstacles in attempts to ambulate the patient.l0, The rate that muscle strength decreases varies with the duration and degree of immobility. In addition, leg muscles appear to lose strength twice as fast as arm muscles during bed rest.I0 Patients who have not assumed upright posture for over a month frequently are ad-
mitted to our VDRU. Thorough assessment of the patient’s ability to initiate movement-i.e., turning in bed, sitting, and weight-bearing ability-must be part of the initial evaluation by the health care team in the special care unit if they are to develop a plan of care to meet the specific rehabilitation needs of each patient. To restore the antigravity cardiovascular reflexes, we start progressive tilt table exercises twice a day until the patient experiences no hypotension at 80 degrees. From that point, we progress the patient to locking of the knees and, eventually, bearing weight. That process may require 2 to 3 weeks for some individuals. When patients tolerate prolonged upright positioning on the tilt table, we begin to work with sitting posture at the edge of the bed and progress to standing attempts. The use of a low bedside platform provides a firm foundation for planting of the feet and reduces the risk of injury to health care workers assisting the patient from an otherwise high bed perch. Initially, standing attempts require maximum assistance. Techniques of proper body mechanics must be taught to the patient and reinforced with each attempt. A standard walker is very useful at this phase of mobility. When the patient is able to stand holding onto a walker for several minutes, we begin attempts at ambulation, supporting ventilation with a portable mechanical ventilator, if necessary. At most facilities, the standard and accepted assistive device for ambulation is a traditional walker with a ventilator mounted on it. That arrangement may be somewhat awkward and adds weight that the patient must deal with during ambulation. For several years, at Mayo, we have found a padded podium type walker with wheels to be much preferred by patients and staff (Fig. 2). Patients find they can support themselves more securely using their upper extremity muscles and equipment can be attached to the podium walker without fear of dislodgment or an unstable situation occurring. Once adequate lower extremity strength and endurance are developed, the patient graduates to the traditional walker, which encourages posture more conducive to otherwise normal ambulation. Ideally, by that point in the patient’s rehabilitation, he or she tolerates walking without ventilator assistance, and there is no need to encumber a walker with equipment. When our patients are able to tolerate unassisted ventilation during the day, we encour-
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
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PROBLEMS ENCOUNTERED IN VENTILATOR-DEPENDENT PATIENTS
Figure 2. Mayo podium walker can be fitted with pressure cycled ventilator and portable gas source.
age periods of physical and occupational therapy conducted at the centralized physical therapy facility, away from the VDRU. That change allows the patient to experience a new environment and sensory stimuli twice a day. Mastery of skills, such as stair climbing and using a kitchen to cook and bake, and the relearning of skills, such as getting in and out of an automobile, are all needed for the patient to function safely at home. Restoring those skills and the ability to carry out activities formerly taken for granted promote selfconfidence, a sense of accomplishment, and the patient’s realization that he or she can cope in the home environment. Adding an exercycle or treadmill to the rehabilitation program when the individual has demonstrated adequate strength and endurance is an excellent way to provide exercise between scheduled physical therapy appointments. Our overall goal is for the patient to achieve a point at which he or she can carry out normal activities of daily living and be out of the home as desired for periods during the day, even if partial or nocturnal mechanical ventilation is necessary.
Probably the most frustrating thing ventilator patients face is their inability to speak and, with it, the loss of a vital method of communication. The use of vocabulary boards, magic slates, written notes, artificial larynx, and fenestrated tracheostomy tubes are all methods intended to restore communication, but most of them require some form of physical manipulation by the patient. Because many patients have limited fine motor skills, failure to effectively use communication devices leads to further frustration on the part of the patient as well as the health care team. For the past 7 years, we have been able to restore most of our patients’ verbal communication by using a low-profile (tight-to-shaft) cuffed tracheotomy tube. We periodically deflate the tube cuff and occlude the lumen with a rubber stopper or cap with a transtracheal catheter threaded through it for delivery of supplemental oxygen (Fig. 3). Unless the patient has vocal cord dysfunction or upper airway obstruction, most can tolerate periodic ”corking trials” even if so brief as to communicate only a few sentences. If the patient does not tolerate even a short time off the ventilator, the cuff of the tracheostomy tube can be deflated to allow him or her to talk after each inspiratory cycle of the machine. The ability to speak and, thereby, communicate, frequently helps anxious patients focus less on their anxiety, facilitating weaning trials. Occlusion of the low-profile cuff tube is preferred to the same procedure done on a standard, floppy, high-volume, low-pressure cuff tracheostomy tube (Fig. 4). A potential danger of airway obstruction may be encountered because of the bulk of the deflated cuff impeding air flow around it and the need for a patient to cough vigorously to clear mucus over the cuff and up the trachea. Fenestrated tracheotomy tubes are available that permit patients to breathe and speak via their upper airway when the inner cannula of the tube is removed and the cannula occluded. If secretions occlude the fenestration, as frequently occurs, however, the patient may experience acute distress because of the same situation as just noted with the floppy cuff. Other tracheotomy tubes, such as the transairway laryngeal control tube, have been developed to facilitate patient communication
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Figure 3. Tracheostomy tube with low profile cuff (tight to shaft) and occlusive cap, which is used when the cuff is deflated. (Courtesy of Bivona Medical Technologies, Gary, IN.)
(Fig. 5). That device uses a pilot tube above the tracheotomy tube cuff and below the vocal cords through which one can provide a source of gas flow, which allows the patient to vocalize. In our experience, this tube rarely leads to adequate patient speech and communication. Measured pressure within the lowprofile cuff is found to be higher than in the floppy cuffs, which causes us concern about the potential for tracheal wall damage if such tubes are used for extended periods of time with the cuff inflated. The cuffs are permeable
to air, however; subsequently, air leaks out and cuff pressures decrease, but that also leads to leaks around the cuff when on the ventilator. Practitioners therefore find that cuff seals can frequently be maintained only by inflating the cuff with normal saline. By the time we begin using the low-profile cuff tube, the patient is able to tolerate periods off the ventilator and extended occlusion trials with the cuff deflated, thereby decreasing the potential for tracheal tissue damage. In our 7 years of using low-profile cuff tubes we have
Figure 4. Tracheostomy tube with high-volume, low-pressure cuff with cuff deflated. (Courtesy of Mallinckrodt Medical TIP, Irvine, CA.)
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
571
Figure 5. Transairway laryngeal control tracheostomy tube. Multiple vents in the shaft proximal to the cuff allow a gas source to flow up through the vocal cords allowing speech with the cuff inflated. (Courtesy of Implant Technologies, Inc., Minneapolis, MN.)
not seen increased incidence of tracheal wall damage. One additional option used by many medical centers to aid speech is the Passy-Muir unidirectional valve.13 It works well for selected patients. Another very common problem experienced in the ventilator-dependent patient population is swallowing dysfunction. A very high percentage of patients aspirate when given liquids or soft or solid foods by mouth. The association between tracheostomy and mechanical ventilation and swallowing dysfunction has never been well understood. Prolonged or repeated translaryngeal intubation, age, poor swallowing synchronization while on a mechanical ventilator, nutritional depletion, the effects of tracheostomy on the swallow mechanism, and sedation are a few of the factors that have been suggested as contributing to aspiration. Advanced age has been shown to be associated with an increased incidence of dysphagia and total swallowing duration, which does not necessarily lead to aspiration.*O It is possible that advanced age, in association with other factors, may lead to an increased incidence of aspiration. Disturbances of laryngeal elevation and closure have been den A recent study scribed post-tracheo~tomy.’~, by Tolep and associatesz7of 35 patients receiving mechanical ventilation showed that results of a bedside swallowing evaluation
were abnormal in 31% of the patients with a neuromuscular disorder and in 37% of the patients without neuromuscular disorders. When a modified barium swallow with video fluoroscopy was performed, however, results were abnormal in an astounding 85% of patients with and 80% of patients without a neuromuscular disorder. Clearly, mechanically ventilated tracheostomized patients have an extremely high incidence of swallowing disorders, which may greatly complicate their already significant respiratory disorder. Tolep and associate~’~ also found that direct laryngoscopy frequently revealed important abnormalities that contributed to the swallowing dysfunction. Adequate nutritional support is extremely important for ventilator-dependent patients, who are usually malnourished, stressed by the metabolic response to injury, immobilized, and in need of respiratory and general body muscle strengthening and endurance training. Prolonged use of parenteral nutrition is very expensive. The long-term use of nasal duodenal/ jejunal feeding tubes is detrimental to patient comfort and fraught with problems in keeping such tubes in place. For those reasons, demonstration of significant and prolonged swallowing dysfunction is an indication for use of a percutaneous endoscopic gastrostomy feeding tube, placed with the aid of a fiberoptic endoscope. If the patient’s gut is functioning, he or she can be
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fed enterally, with intermittent gravity feedings or nocturnally if rehabilitation activities during the day make tube feedings undesirable. The importance of nutritional support must not be underestimated in ventilator-dependent patients.I5 Although much has been made in the critical care nutrition literature of the value of high fat, low carbohydrate enteral feedings in aiding in liberation of ventilator dependent patients by reducing their carbon dioxide production, there is little in the literature to support that theory. Van den Berg and associatesz8 concluded that, although high fat, low carbohydrate enteral feedings reduce the respiratory quotient values in ventilated patients, with a decrease in carbon dioxide production, that had no effect on the arterial carbon dioxide tension during weaning from the ventilator. EDUCATING THE PATIENT AND THE FAMILY
Once the decision is made to send a prolonged ventilator-dependent patient home, it is essential the health care team provide the patient and caregivers with the knowledge needed to administer care and cope with the sometimes difficult task they are undertaking. The patient has to feel comfortable and confident with the caregivers and they, in turn, must develop self-confidence in their role, if success at home is to be achieved. The health care team must appreciate the feelings of uncertainty both patient and caregiver may have in assuming roles very different from those that existed prior to the patient’s illness.25 MatthisI4 pointed out that societal expectations in the United States demand that families provide the greatest share of care for the disabled. The realities of not being able to find alternative sites of ventilator-dependent patient care in the area also may lead to the need for home caregivers, usually family members. Unless families are prepared for their caregiving jobs, those societal demands are likely to become less ~iab1e.l~ Sevick and associatesz5reported a study of caregivers for 27 home-based ventilator-dependent patients who responded to a questionnaire about their perceptions of their experience. The primary caregivers reported that the needs of the patients are extensive and that they spend an average of 8.4 hours/ day caring for their family member. Individu-
als cared for in the home may require considerable assistance with activities of daily living, and many require total care in many functional domains. Home caregivers are responsible for knowing how to operate ventilators and trouble-shoot problems as well as resolving problems with artificial airways. Despite those findings, the respondents did not perceive home placement to be a negative experience. In another study of caregiver reactions to their roles and experiences, Smith and associatesZ6studied 20 caregivers and adult patients dependent on mechanical ventilation at home. They reported that the caregivers, who were all relatives, spent 7.3 hours/day in direct patient care, with little assistance from extended family or professionals. Overall family functioning was perceived as satisfactory by both patients and caregivers. A threephase teaching program sensitive to individual learning needs was preferred. A variety of coping strategies were used by families to manage home mechanical ventilation, including problem solving and mobilizing help from friends, extended family, community, or church. In a study of 13 caregivers of ventilatordependent patients by Findeis and associa t e ~ caregivers ,~ reported feeling moderate levels of burden and negative impacts of caregiving but a positive sense of mastery and satisfaction with their role. Decisions on home care options occasionally are influenced by the type of treatments patients require and caregivers are expected to provide. As noted previously, many patients with chronic respiratory failure will agree to try noninvasive mask ventilationbut do not want further intervention if it fails or if they deteriorate to the point that noninvasive ventilation is no longer effective. In a survey of ALS patients in northern Illinois, for example, Moss and associates*’ found that fewer than 10% of patients had chosen home mechanical ventilation. They suggest that cost; insurance coverage; and patients’, families’, and physicians’ negative attitudes toward home mechanical ventilation may be important factors. ALS patients are a perfect example of individuals who require a good deal of assistive care at home, with increasing demands on the caregiver as the disease progresses. Moss17 reported that families caring for ALS patients relate experiencing major burdens and only half would choose similar home care options for themselves. Moss and
OPTIONS FOR LONG-TERM VENTILATORY SUPPORT
as~ociates’~ also reported that the mean yearly cost for patients on home mechanical ventilation 24 hours/day was $153,252. For home ventilator care to be successful, without overwhelming the family, the health care team providing teaching must be aware of the caregivers’ ability and readiness to learn and must be sensitive to the concerns and fears they experience. It is the duty of the team to assist the family in seeking resources in the community that can assist them, if needed, and to have those resources mobilized before the patient is dismissed from the hospital. Home nursing agency or public health nurse visits may be extremely useful in assisting the caregiver with establishing routines of patient care, as well as providing periodic examination of the patient’s nutritional, physical, and psychosocia1 status. Our VDRU nurses and respiratory therapists routinely call the patient’s home on the day of arrival and on a regular basis thereafter. The follow-up determines patient status, whether proper supplies were available upon the patient’s return home, and whether there are questions or immediate problems, and establishes a resource link. Caregivers are instructed to call the VDRU 24 hourslday, 7 days/week, if they cannot solve a particular problem or have questions about any aspect of the patient’s care. The VDRU keeps a copy of the patient’s history summary and home-going care plan, to which on-duty personnel can refer if calls are placed to the unit. With home care becoming an increasing choice of alternative site care, the health care worker is often faced with plans that are extensive and relatively complicated, and it is imperative that meticulous attention is paid to detail in all aspects of the ~ l a n . To 2 ~ assure that occurs, our VDRU has developed a comprehensive checklist of the details that require attention (Appendix). The checklist assures that teaching is done in the following areas: required forms and prescriptions, all components of respiratory care, standard and bilevel ventilator operation, oxygen equipment and safety, medication information, nutrition plans and method of administration, fluid balance assessment, activity requirements, and emergency care. In addition, patients are given written instructions on many of the aforementioned issues, as appropriate. Meeting patients’ acute needs and preparing them and their families for what lies ahead is truly a team effort. No patient or
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family should be excluded from decisions that will affect their life and, above all, no patient should go home unless those who will be involved in his or her care are properly trained and competent. References 1. Criner GJ, Kreimer DT, Pidlacan L: Patient outcome following prolonged mechanical ventilation via tracheostomy [abstract]. Am Rev Respir Dis 147874, 1993 2. Criner GJ, Kreimer DT, Tomaselli M, et al: Clinical investigations in critical care: Financial implications of noninvasive positive pressure ventilation (NPPV). Chest 108:475, 1995 3. Findeis A, Larson JL, Gallo A, et al: Caring for individuals using home ventilators: An appraisal by family caregivers. Rehabilitation Nursing 19:6, 1994 4. Gillespie DJ, Marsh HM, Divertie MB, et a1 Clinical outcome of respiratory failure in patients requiring prolonged mechanical ventilation. Chest 90365,1986 5. Gracey DR Ventilator care beyond the intensive care unit. Mavo Clin Proc 70:595.1995 6. Gracey DR, Hardy DC, Naessens JM, et al: The Mayo ventilator dependency rehabilitation unit: A 5-year experience. Mayo Clin Proc 72:13, 1997 7. Gracey DR, Naessens JM, Krishan I, et al: Hospital and posthospital survival in patients mechanically ventilated for more than 29 days. Chest 101:211,1992 8. Gracey DR, Naessens JM, Viggiano RW, et al: Outcome of patients cared for in a ventilator-dependent unit in a general hospital. Chest 107494, 1995 9. Gracey DR, Nobrega FT, Naessens JM: Financial implications of prolonged ventilator care under DRGs 474 and 475. Chest 91:424, 1987 10. Greenleaf JE, Van Beaumont W, Convertino VA, et al: Handgrip and general muscular strength and endurance during prolonged bedrest with isometric and isotonic leg exercise training. Aviat Space Environ Med 54:696, 1983 11. Hung J, Goldwater D, Covertino VA, et al: Mechanism for decreased exercise capacity after bed rest in normal middle aged men. Am J Cardiol 51:344, 1983 12. Latriano B, McCauley P, Astiz ME, et al: Non-ICU care of hemodynamically stable mechanically ventilated patients. Chest 109:1591, 1996 13. Manzano JL, Lubillo S, Henriquez D, et al: Verbal communication of ventilator-dependent patients. Crit Care Med 21:512, 1992 14. Matthis E: Family caregivers want education for their caregiving roles. Home Health Care Nurse 10:19, 1992 15. McMahon MM, Benotti PN, Bistrian BR A clinical application of exercise physiology and nutritional support for the mechanically ventilated patient. JPEN J Parenter Enteral Nutr 14:538, 1990 16. Morganroth ML, Morganroth JL, Nett LM, et al: Criteria for weaning from prolonged mechanical ventilation. Arch Intern Med 144:1012, 1984 17. Moss AH, Casey P, Stocking CB, et al: Home ventilation for amyotrophic lateral sclerosis patients: Outcomes, costs, and patient, family, and physician attitudes. Neurology 43:438, 1993 18. Muller EA: Influence of training and inactivity on muscle strength. Arch Phys Med Rehabil51:449, 1970
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19. Nash M: Swallowing problems in tracheotomized patient. Otolaryngol Clin North Am 21:701, 1988 20. Robbins J, Hamilton JW, Lof GL, et a1 Oropharyngeal swallowing in normal adults of different ages. Gastroenterology 103:823, 1992 21. Sasaki CT, Suzuki M, Hoiuchi M, et al: The effect of tracheostomy on the laryngeal closure reflex. Laryngoscope 871428,1977 22. Scheinhorn DJ, Artinian BM, Catlin JL: Weaning from prolonged mechanical ventilation: The experience at a regional weaning center. Chest 105:534, 1994 23. Scheinhom DJ, Hassenpflug M, Artinian BM, et al: Predictors of weaning after 6 weeks of mechanical ventilation. Chest 107500, 1995 24. Sevick MA, Kamlet MS, Hoffman LA, et al: Economic cost of home-based care for ventilator-assisted individuals. Chest 109:1597, 1996
25. Sevick MA, Sereika S, Matthews JT, et al: Homebased ventilator-dependent patients: Measurement of the emotional aspects of home caregiving. Heart Lung 23269, 1994 26. Smith CE, Mayer LS, Perkins SB, et al: Caregiver learning needs and reactions to managing home mechanical ventilation. Heart Lung 23:157, 1994 27. Tolep K, Getch CL, Criner GJ: Swallowing dysfunction in patients receiving prolonged mechanical ventilation. Chest 109:167, 1996 28. van den Berg B, Bjogaard JM, Hop WC: High fat, low carbohydrate, enteral feeding in patients weaning from the ventilator. Intensive Care Med 20470, 1994 29. Weeks SK: What are the educational needs of prospective family caregivers of newly disabled adults? Rehabilitation Nursing 20:256, 1995
Address reprint requests to Douglas R. Gracey, MD, MS Division of Pulmonary and Critical Care Medicine Mayo Clinic 200 First Street, SW Rochester, MN 55905
APPENDIX
Home-Going Checklist Chronic Ventilator Rehabilitation Unit -0
al
c
al Cl
Forms Physician-signed oxygen certification sheet Nursing referral Physicians' dismissal summary Physical therapy referral Nutrition referral Occupational therapy referral Teaching instructional books
$2 05
n o
0 0
n o o n
0 0 0 0
o n n o
0 0 0 0
Written medication instructions Disease-specific pamphlets Discharge Ventilator/CPAP/BiPAP Operation" Power sources Power switch Control panel Oxygen supply connection Tubing connections Humidifier Oxygen flow rate Mode Alarms Rate Volume Mask fit Cleaning Transport Trouble-shooting Emergency and/or resources
o n n o n o
o n
0 0
Respiratory Teaching Respiratory anatomy Tracheostomy tube Metal tube cleaning Oxygen equipment Ventilation techniques Tracheostomy suctioning Lavage technique Stoma care Cuff inflation techniques Tracheostomy occlusion procedure Transtracheal oxygen Tracheostomy tube change Inhalation therapy Chest physiotherapy Signs/symptoms of respiratory infection
n o n o n u o n
Oxygen Equipment Tanks Liquid Transtracheal Nasal cannula Concentrator Safety
o 0 o o o
Medication Verbal instruction completed Written information Written schedule Patient received prescriptions Patient received medications
0 0 0 0
n 0 n n n
Nutrition Tube Feeding Verbal instruction Written instructions Caregiver returned demonstration Checking for residual Setting up feeding equipment Measuring and hanging tube feeding Flushing the set Runs feeding at correct rate Cleans equipment Resource for feeding and supplies Oral Feeding Verbal instruction Written instructions Nutrition referral
n o 0 0 n o
Wound and Skin/lncision Verbal teaching Written information Return demonstrations of care of dressing
n o n o o n
Activity Instructed on use of assist devices Activity program instruction Travel with oxygen
0 0
n o o n 0 0
o n
Emergency Ventilator mechanical failure Power outage Tracheostomy tube dislodgment Mucous plug Tracheostomy stoma bleeding
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0 0 0 0 'CPAP
0 0 0 0
Fluids Signs/symptoms dehydration Signs/symptoms fluid overload =
continuous positive airway pressure; BiPAP
=
Respiratory arrest Cardiac arrest
bilevel positive airway pressure