Preparing the Patient and Family for Home Mechanical Ventilation.
In the past decade, an increasing number of individuals use mechanical ventilatory support for all or part of the day (Adams, Whitman, & Marcy, 1993; Lin, Huang, Lan, & Tsai, 1996; Litwin, Flegel, & Richardson, 1992). Adams et al. (1993) found that the number of ventilator-assisted individuals living at home and in long-term care facilities rose 110% from 1986 to 1992. Litwin et al. (1992) reported a 21% increase in Canadian home ventilator care during 1991. In a 1995 survey of 98 HMV users, Goldstein, Psek, and Gort found that at the time of the survey, subjects had received HMV for an average of 59.5 months (range 1.2 to 117.8 months). Fifty-three percent used ventilation electively. Ventilators were used continuously 18% of the time, at night only 37% of the time, and at night with occasional daytime use for 45%. Twenty-seven (28%) of the subjects identified themselves as totally independent, and 32 (33%) rated themselves as partly dependent on caregiver assistance for daily activities.
A variety of conditions can lead to chronic respiratory failure (see Table 1). For chronic respiratory failure of parenchymal origin, especially chronic obstructive pulmonary disease (COPD), the efficacy and survival benefits of HMV have been debated (Branthwaite, 1990; Dudeffant, Manier, Gbikpi-Benissan, & Cardinaud, 1985; Kinnear & Shneerson, 1985; O'Donohue et al., 1986). Muir, Girault, Cardinaud, and Polu (1994) found positive effects of tracheostomy and home mechanical ventilation on long-term outcomes in advanced COPD, suggesting that this treatment may be a valuable alternative to long-term oxygen therapy for such patients. Thus, identifying appropriate candidates for HMV is essential.
Table 1. Causes of Chronic Respiratory Failure Central Nervous System Disorders Central apnea Primary alveolar hypoventilation Brain Stem Tumor, Vascular Malformation Spinal Cord Lesions Cervical trauma, quadriplegia Syringomyelia Neuronal or Muscular Disease Amyotrophic lateral sclerosis Muscular dystrophies Spinal muscular atrophy Multiple sclerosis Poliomyelitis Chronic polyneuropathy Myopathy Phrenic Nerve Damage Postoperative, traumatic damage Idiopathic paralysis of the diaphragm Chest Wall Restriction Kyphoscoliosis Thoracoplasty Chronic Obstructive Pulmonary Disease
Criteria for Use
The evaluation of patients and their families for HMV begins with assessing the cause of respiratory failure and all other disease processes. To be effectively cared for at home, patients must be clinically stable when discharged from the institutional setting. Patients and their families must be willing to cooperate with the program, and the family members must be available as caregivers. The home must be in a physically supportive environment with psychosocial resources. A comprehensive funding plan must be in place.
Clinical stability. Patients with neuromuscular or skeletal disorders or central hypoventilation syndromes are often good candidates for HMV. They usually have a stable disease course, with little or no airflow obstruction requiring frequent ventilator changes; and they tend to be younger, with fewer of the complications that come with advancing age (Make & Gilmartin, 1990). German researchers (Windisch et al., 1997) found, in a study of 67 HMV patients (20 each with COPD, scoliosis, and neuromuscular disorders; 7 others), that the quality of life in terms of psychological and functional aspects improved for patients with scoliosis and neuromuscular diseases who used HMV, as compared to that for patients with COPD. In the first group, the quality of life improved irrespective of the stages of their diseases. However, for patients with COPD, positive outcomes were less evident.
Patients who are not optimal HMV candidates include those with concomitant medical conditions that require frequent monitoring and medical intervention, and those with progressive diseases that require frequent changes in ventilator settings. These patients usually cannot be cared for well at home.
For HMV to succeed, co-existing diseases and other organ system problems must be well controlled. Before discharge, physiologic stability including adequate nutrition and the absence of significant dyspnea and infection must be ensured. Also, the simplest ventilator mode and the lowest possible FI[O.sub.2] must be achieved (Donner et al., 1993; Ferns, 1994; Glass, 1998).
Patient's and family's desire for HMV. Although the use of HMV is increasing, information on how users perceive it is incomplete. Goldstein et al. (1995) reported that only 38% of the 98 patients studied felt they had made an informed choice in starting HMV. However, having used the program, 87% of those patients reported their use of a mechanical ventilator to be a positive experience. The personal resources and coping skills needed by patients receiving HMV are strong motivation, optimism, resourcefulness, self-determination, flexibility, and adaptability (Make & Gihnartin, 1990). A 1996 study found that the most important adaptation factors are the level of family communication and the degree of family commitment (Glass, Boling, & Gammon, 1996).
Ability to learn and perform the care needed. The caregivers and patients using HMV do not always have the abilities and information they need to use it successfully. In a 1994 study of ventilator-dependent patients, Sevick and colleagues (1994) found that because of limited bed availability, family members were pressured to take patients home, sometimes when the support for their daily care at home was inadequate.
Moreover, patient and family frequently underestimate the burden imposed by HMV. Health care providers must give the family members a realistic picture of what to expect since care responsibilities often go on 24 hours a day, 365 days a year. In a study of 20 caregivers, Smith et al. (1994) found that family caregivers spent, on average, 7.3 hours daily on direct care, with little assistance from either extended family or professionals. Although they had been taught survival skills, these caregivers felt they had needed more information about HMV. Disrupted schedules, financial strain, burden, and negative reactions to caregiving were associated with more hours of ventilator use. However, both patients and caregivers reported satisfactory family functioning. There were no differences by gender in perceived learning needs, family function, and caregiving tasks. A more recent study (Sevick, Kamlet, Hoffman, & Rawson 1996) of 277 primary family caregivers in 37 states found a much higher average number of hours spent each day in caring for HMV patients -- 11.4 hours. Since HMV requires motivated, optimistic persons who can deal with problems flexibly and positively, the psychosocial resources of the patient and the family are an important element in its feasibility. In particular, a plan for comprehensive funding must be developed.
Accessible resources. Since the patient's home environment must be supportive, necessary adaptations must be identified early. The patient must be able to use appropriate rooms, and a safe emergency evacuation route must be available. The home's electrical circuits must be adequate for the HMV equipment. Other essentials are adequate storage space, a safe water supply, telephone service, and in some cases a call system (Make & Gilmartin, 1990).
Although the costs for home care are substantially less than those in hospitals, it remains expensive (Bach, Intintola, Alba, & Holland, 1992; Goldberg & Frye, 1990; Sevick et al., 1996). In a study of direct and indirect costs for 227 HMV patients, Sevick and colleagues (1996) found that the total cost of care was $7,642 per month for LPN private duty care and $8,596 per month for RN care. At present, a major factor in home care cost is the need for professional caregivers. Allocating most of the patients' care to family members and friends may reduce costs markedly, but can have other social, psychologic, and economic consequences. Short of that option, many ventilator-dependent patients can be cared for by nonprofessional attendants, which also significantly reduces cost.
Preparation for Going Home
It is important to establish effective communication with patients and families before discharge in order to involve them completely in planning. When the patient has been stabilized on the ventilator, communication can be achieved by deflating the tracheostomy tube cuff so the patient can talk. Note that, when doing so, an increased tidal volume may be needed to compensate for the volume lost around the tracheostomy tube during both the inspiratory and expiratory phases of ventilation. Other means of communication are a speaking tracheostomy, an electro-larynx, a buccal resonator, a writing board, a computer, or mutually understood signals. Once HMV has been chosen and it has been established that a patient has the necessary resources for home care, preparation for discharge can begin. Goals should be realistic. Guidelines are provided here with the understanding that modifications may be necessary.
Optimal functional status. Although function often improves when a patient goes home, steps should be taken before discharge to bring HMV candidates to optimal status to increase the chances of HMV's success. Optimal functional status includes the absence of acute infections, a stable metabolic status, controlled secretions, the ability to spontaneously clear or suction secretions, stable ventilator parameters with a Fi[O.sub.2] of .40 or less, and the simplest ventilator mode possible (Donner et al., 1993; Ferns, 1994; Glass, 1998). Patients who have been hospitalized for extended periods of time may have less strength, mobility, and independence than before hospitalization. Occupational and physical therapists can help restore patients to the optimal levels of functioning (Beckman, 1995; Spence, 1995).
Adequate caloric intake and a workable bowel program are important in discharge preparation. A swallowing test should discover whether the patient can eat safely. Additional compensatory mechanisms are altering food consistency and teaching the patient to swallow repetitively after receiving a bolus of food. By the time of discharge, many patients have improved swallowing and may be able to eat. For patients at home who cannot swallow safely, early placement of either a PEG or a PEJ tube is important in maintaining nutritional balance.
Ventilatory support needs must be determined with the patient's help. Oxygen concentrators are expensive and they limit mobility. For patients who can maintain adequate oxygenation on room air (0.21 Fi[O.sub.2]), successful trials of ventilation without oxygen should be accomplished before discharge. Positive end expiratory pressure (PEEP) and pressure support ventilation (PSV) are not available on some small home ventilators, so either those settings must be modified, or a more expensive machine must be provided. If the patient can be comfortably ventilated on a simple mode, costs and complications will be less.
The administration of medicines should be simplified so that both the patient and the caregiver can get adequate rest. Most ventilated patients take a variety of medications for problems with other body systems. It is important to evaluate the medications to discover whether the family can administer them without difficulty and whether the patient can maintain adequate sleep. In preparation for discharge, flu and pneumococcal vaccines should also be considered.
Patient/family care conferences to communicate goals. At the initial conference the family and the patient should discuss the goals for HMV with the hospital care providers and develop a plan. At an early care conference the discharge date can be determined with the patient and the family. Also early in the discharge planning, if the physician managing hospital care will not care for the patient after discharge, the subsequent physician should be identified and enlisted in the planning. Goals for teaching home mechanical ventilation care are listed in Table 2 and a documentation checklist for patient and family instructions is provided in Table 3. Throughout the discharge planning, periodic conferences with the patient, family caregivers, and hospital care providers should be held to evaluate progress (see Table 4).
Table 2. Goals for Teaching Home Mechanical Ventilation Care 1. Maintain Clear Airway Education related to: Tracheostomy care, suctioning, tube change Signs of infection Proper hydration for thin, clear secretions Chest physiotherapy and augmented cough Medication administration bronchodilators and antibiotics Mobility 2. Maintain Adequate Oxygenation and Ventilation Education related to: Proper use and maintenance of mechanical ventilator Use of manual resuscitation bag In-line nebulized medications 3. Perform Skills to Maintain Cleanliness and Maximum Strength and Flexibility Education related to: Bathing, shampooing, shaving Mouth care Management of bowel and bladder elimination Range of motion, strength and flexibility exercises 4. Prevent Irritation, Infection, and Skin Breakdown Education related to: Turning, positioning Transfer, ambulation Tracheostomy stoma care, PEG site care 5. Maintain Adequate Nutrition and Hydration Education related to: Feeding Flushing, declogging tube Assessing hydration/dehydration Recognizing and dealing with diarrhea and constipation 6. Maintain Effective Coping with Home Care for Both Patient and Caregivers Education related to: Recognition of coping skills found to be useful in past experiences Communication Resources for counseling, networking with others Other care options available Table 3. Documentation of Instructions for Patient and Family Initiate and Document Teaching Related to the Following: Date Initials Initiate care plan and patient education checklist in computer. View with patient/family videotape (Shiley) on trach care/suctioning before beginning tasks. (May repeat prior to discharge for reinforcement.) Tracheostomy care Tracheostomy dressing change Tracheostomy tie change Suctioning equipment Use of manual resuscitation bag Nebulized medications Tracheostomy tube change Home ventilator management - taught by home ventilator company in hospital and at patient's home prior to discharge. Arrange for viewing of film on patient's home ventilator when available and appropriate. Films on Companion 2800 and 2801 can be obtained from the Respiratory Care Coordinator. Communication techniques Table 4. Additional Teaching Needs Date Initials Skin car Mobility Medication administration Tube feeding Foley catheter care PEG care Hickman or Groshong catheter care Activities or daily living CPR training for care providers
Partnership with the medical equipment provider. Since many of the pitfalls during home care are related to equipment problems or failure, it is advantageous to develop an early, continuing relationship with the provider of durable medical equipment. The home care company can help with home modifications. Their personnel can also help to plan where the patient will sleep, how he/she will move about the house, and how he/she will be evacuated in an emergency.
Stress and coping with HMV. Total dependence on an external object for life support can inflict great stress on the patient. Bertolotti and Carone (1994) suggest that such stress can give rise to psychologic symptoms: the patient's fear of death, feelings of abandonment or of mutilation, and changes in self-image. Patients' family members also need help in dealing with stressful situations. False beliefs, anxiety, and other debilitating emotions are associated with the use of mechanical ventilation. At first, the immediate challenges to master and manage the home ventilator equipment may overshadow the importance of psychologic support for the patient and the family caregivers. Psychologic support should be offered well before discharge, and periodically afterwards, during ambulatory care sessions.
Two additional factors associated with successful adaptation to mechanical ventilation are how well tile family members communicate with each other, and the degree of commitment each one has to providing the patient's care. Helping patients and their family members to communicate openly can help them cope with the technical and psychological aspects of mechanical ventilation, and will make the transition from the hospital to the home easier for both. In the hospital staff's communications, an ethical responsibility is to explain to patients that ventilation will not change the course of their underlying disease or prognosis.
HMV can have a significant impact on family life, although there has been little research to explore the consequences fully. Some studies have found that family members spent between 8 and 11 hours of every day providing direct care. Even if chronic disability has resulted in dependence on a caregiver before starting HMV, the addition of HMV can create a new set of feelings and emotions. Make and Gilmartin (1990) identified the most important family home care skills as motivation, optimism, resourcefulness, self-determination, flexibility, and adaptability. Working on these skills early in the preparation stage improves the likelihood of success. Counseling both before and after discharge can be helpful. Families who have provided HMV care can help others by sharing their experiences of success; and failure (Glass, Boling, & Gammon, 1996).
Developing alternative plans. When the decision is made to begin HMV, the discussion should include the other options for the patient or family if HMV is not successful. Some people choose not to continue long-term mechanical ventilation if they cannot be at home; others accept nursing home care if it is the only choice. Unless all the options are openly discussed when HMV is planned, patients and families may later feel trapped and angry. This can obstruct communication and make the situation difficult to resolve.
Teaching Home Ventilation Care
Discharge teaching is often based on the health professionals' perceptions of what patient need to know and how they can learn it best. Thompson and Richmond (1990) asked 13 ventilator-dependent patients living at home to describe ideal discharge instruction. The patients believed that teaching should occur (a) at the bedside, (b) with one or two family members, (c) with only the team member doing the teaching, (d) for no more than 30 minutes at a session, and (e) using demonstrations. These patients thought that instruction about lung disease was less important than to explain and demonstrate airway maintenance, equipment maintenance and use, and emergency care. Clearly, as discharge preparation begins, health care providers should assess the learning needs of patients and caregivers and include them in setting goals for the instruction and begin teaching.
Airway maintenance. Clean technique using thorough handwashing, rather than sterile technique, is recommended for tracheostomy care, suctioning, and tracheostomy tube changes in the home (O'Donohue et al., 1986). Instructions for airway maintenance at home should also include: signs and symptoms of infection; proper hydration to ensure thin, clear secretions; chest physiotherapy, with augmented cough if needed; and giving respiratory medication (nebulized breathing treatments).
Equipment maintenance and use. The patient and/or the family must become expert at cleaning the mechanical ventilator, changing circuits, and troubleshooting when ventilator alarms occur. The home care company should provide the 24-hour backup for equipment failure. The patient and the family should become comfortable with use of the manual resuscitation bag in case of equipment breakdown or power failure. While still in the hospital, the patient should be placed on the ventilator that will be used at home. This will help the patient and the caregivers become accustomed to the equipment.
Emergency care. Family caregivers must learn to troubleshoot any problems that arise. They must respond to each situation, whether life threatening or not. Families should be given a list of important phone numbers: the respiratory care company, the home health nursing agency, a contact person in the intensive care unit, the power company, the telephone company, and emergency medical services. Before the patient is discharged, hospital personnel should go over possible scenarios for problems with the family.
Disease process. Understanding the need for HMV may help the patient and the family deal with home care more effectively. If the disease is progressive, knowing what to expect may lessen their fear and anxiety.
Nutrition. Once home nutritional needs have been defined, teaching the family about feeding can begin. If the patient can eat safely, the family should watch for aspiration and use methods to prevent or minimize it. If enteral feedings and medications are necessary, the family must learn how to administer them. They must also learn how to care for the enteral tube, how to assess for hydration and dehydration, and how to deal with diarrhea and constipation. They must understand the purposes of the patient's medications and side effects.
Other instruction. Instruction on maintaining good patient hygiene and range of motion exercises to improve strength and flexibility are also necessary.
Sources of Family Support
Haynes, Raine, and Rushing (1990) stated that teaching is the key to achieving HMV goals. Teaching should be individualized to suit each patient and family. Videotapes, booklets, observation, and mannikin demonstrations are among the materials available for patient education. Numerous teaching strategies are useful for patients and families and include question and answer sessions, problem-solving scenarios, and discussions. Return demonstrations, techniques, and their rationales can be reviewed. Before the patient is discharged, the family should perform a skills return demonstration, to increase their confidence and assess learning.
For some patients and families, a short home visit prior to discharge is helpful. When the caregiver can provide the care needed for a short time, it builds confidence and comfort in both caregiver and the patient. Caregivers also may provide at least 24 hours of the patient's care in the hospital when resources for doing so are available (Muir & Cuvelier, 1995).
Patients and families who have experienced HMV have valuable knowledge to share with others who are learning to care for someone at home (Glass et al., 1996). The state chapter of the American Lung Association may have a list of patients in the area who are mechanically ventilated at home. Often patients and families are eager to assist those who are considering HMV. Help can also be sought from support groups, pastoral services, and mental health professionals.
Presently there is only limited respite care available for mechanically ventilated patients, and it may be possible only through costly hospital admission. Long-term care may be limited to skilled nursing home placement.
"Ducks, all in a row." During the last days before discharge, several important steps must be taken. It is important to have a schedule set that allows the patient 6 to 8 hours of uninterrupted rest at night; this makes it possible for the patient to function at the optimal level, and it prevents deterioration of strength and respiratory status. Transportation from the hospital for the ventilated patient must be arranged, including the decision about whether a private vehicle or an emergency medical transport will be most comfortable and safe. Who will accompany the patient home and who will assist the patient and family when they arrive must be decided to ensure the availability and proper functioning of all equipment. Prescriptions for home medication should be filled, and instructions on their administration and side effects to family caregivers should be documented. A system for communicating with the primary nurse or case manager should be established to provide emotional and psychological support after discharge. However, once the patient has been discharged, the home care agency assumes responsibility for additional teaching and reinforcement.
Followup care. Once the patient is at home, home care personnel will provide whatever further instruction is needed for the patient, the family, and the caregivers. Their feedback also can benefit the hospital staff; they should report how the patient and family are doing and suggest any needed improvements in discharge preparation.
Ensuring the Hospital's Continued Improvement in HMV Preparation
It is recommended that primary nurses or case managers talk with each patient and family a few months after discharge to gather valuable information that will benefit future patients. Among the areas to discuss are: suggested topics for additional teaching; changes after discharge that can lead to simpler, safer, and more effective care; or helpful hints to make the transition to home care less traumatic can be incorporated into future teaching plans. Readmissions and their rationale should be monitored and identified. Problems relating to the home setting should be addressed.
Preparing patients for mechanical ventilation at home is a new area of nursing and medical staff responsibility. The health care team needs education and reinforcement in the task of providing care and instruction for patients and families considering HMV. Protocols and patient teaching guides help make instruction uniform and reduce the intimidation of HMV.
Adams, A.B., Whitman, J., & Marcy, T. (1993). Surveys of long-term ventilatory support in Minnesota: 1986 and 1992. Chest: The Cardiopulmonary Journal, 103, 1463-1469.
Bach, J.R., Intintola, R, Alba, A.S., & Holland, I.E. (1992). The ventilator-assisted individual: Cost analysis of institutionalization vs rehabilitation and in-home management. Chest: The Cardiopulmonary Journal, 101(1), 26-30.
Beckman, R. (1995). Rehabilitating the ventilator-dependent patient. Rehabilitation Management: The Interdisciplinary Journal of Rehabilitation, 8(1), 51-53.
Bertolotti, G., & Carone, M. (1994). From mechanical ventilation to home-care: The psychological approach. Monaldi Archives of Chest Disease, 49, 537-540.
Branthwaite, M.A. (1990). Home mechanical ventilation. European Respiratory Journal, 3, 743-745.
Donner, C.F., Howard, R, & Robert, D. (1993). Patient selection and techniques for home mechanical ventilation. European Respiratory Society Rehabilitation and Chronic Care Scientific Group. Monaldi Archives of Chest Disease, 48, 40-47.
Dudeffant, R, Manier, G., Gbikpi-Benissan, G., & Cardinaud, J.R (1985). Outcome of patients with chronic respiratory insufficiency treated at home with tracheotomy and assisted ventilation. Revue des Maladies Respiratoires, 2, 145-150.
Ferns, T. (1994). Home mechanical ventilation in a changing health service. Nursing Times, 90, 43-45.
Glass, C. (1998). Home care management in ventilator-assisted patients. In M. Chulay (Ed.), Research-based practice protocols. Aliso Viejo, CA: AACN.
Glass, C., Boling, RA., & Gammon, S. (1996). Collaborative support for caregivers of individuals beginning mechanical ventilation at home. Critical Care Nurse, 16(8), 67-71.
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Lin, M.C., Huang, C.C., Lan, R.S., & Tsai, Y.H. (1996). Home mechanical ventilation: Investigation of 34 cases in Taiwan. Chang Keng I Hsueh, 19, 42-49.
Litwin, P.D., Flegel, C.M., & Richardson, B.G. (1992). An overview of home mechanicai ventilation in Canada. RRT: The Canadian Journal of Respiratory Therapy, 28(2), 67-73.
Make, B.J., & Gilmartin, M.E. (1990). Mechanical ventilation in the home. Critical Care Clinics, 6, 785-796.
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Muir, J.E, Girault, C., Cardinaud, J., & Polu, J. (1994). Survival and long-term follow up of tracheotomized patients with COPD treated by home mechanical ventilation. Chest: The Cardiopulmonary Journal, 106(1), 201-209.
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Sevick, M.A., Sereika, S., Matthews, J.T., Zucconi, S., Wielobob, C., Puczynski, S., Ahmad, S.M., & Barsh, L.F. (1994). Home-based ventilator-dependent patients: Measurement of the emotional aspects of home caregiving Heart & Lung, 23(4), 269-278.
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Spence, A. (1995). Home ventilation: How to plan for discharge. Nursing Standard, 9(42), 38-40.
Thompson, C.L., & Richmond, M. (1990). Teaching home care for ventilator-dependent patients: The patients: perception. Heart & Lung, 19(1), 79-83.
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Connie Glass, MSN, RN, is Research Coordinator, Medical Respiratory Intensive Care Unit, Medical College of Virginia Hospitals, Richmond, VA.
Mary Jo Grap, PhD, RN, CCRN, ACNP, is Associate Professor, School of Nursing, Virginia Commonwealth University, Richmond, VA.
Gwen Battle, BSN, RN, is Clinician III, Medical Respiratory Intensive Care Unit, Medical College of Virginia Hospitals, Richmond, VA.
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|Author:||Glass, Connie; Grap, Mary Jo; Battle, Gwen|
|Date:||Apr 1, 1999|
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