Factors Which Are Critical For Selection of Long-term Mechanical Ventilation
Not all ventilator-assisted persons are candidates for care outside of the hospital. Prior to making any definitive decision about the optimum location for the continued care of these individuals, the following factors which are not related specifically to disease must be carefully considered.
A. Desires of the Patient
For many patients respiratory failure may develop slowly and insidiously, thereby allowing the patient, the family and the physician ample time to consider long-term mechanical ventilation as a therapeutic option. Potential candidates for chronic ventilatory support should be informed about the advantages and disadvantages of long-term mechanical ventilation so that a knowledgeable decision can be reached concerning their desire for such therapy. An important part of this decision is based on the feasibility of long-term ventilatory support in the patients home or at an alternate site in the community. This information cannot be conveyed in a single session since the issues are complex and relate to both survival and quality of life.
While health care professionals have the right and the obligation to advise the patient and family, the ultimate decision must reside with the patient. In some states, informed consent in writing is necessary for reimbursement. Although many patients may initially choose not to accept mechanical ventilatory support, some may later change their minds at a time of crisis. Ethical problems may ensue if the patient is confused due to hypoxia or hypercapnia and competence is impaired. The decision to initiate mechanical ventilation may be made in consultation with the patients closest living relative or with an individual who has been given the power of attorney for health affairs. However, a decision for long-term mechanical ventilation should be made only after the patient’s acute respiratory failure has been corrected and the patient can participate intelligently in the decision-making process. Decisions for change in the method of mechanical ventilation (a change from negative pressure to positive pressure) may be necessary during the course of the illness, and the patient must understand and be involved in this decision-making process. Long-term ventilatory support for patients who are mentally impaired or unable to communicate their desires must be based on consultation with the family and on the potential long-term benefits from this type of management.
B. Desires of the Family
Although the patient desires and needs are paramount in the decision for long-term mechanical ventilation, the concerns and desires of the family must also be considered. The ability and willingness of the family to care for the pediatric patient are usually the most important elements for success in home care. Since the family must be willing and able to participate extensively in home care, they must be involved in the entire process of patient selection and discharge planning. Emotional pressures on the family may be intense and should be recognized and addressed by health care professionals. Some family members require extensive and repeated explanations and most need a sympathetic and supportive approach. Psychologic and social assistance may be very helpful in aiding the family to cope with the conflicting emotions which are likely to occur. Both the family and the patient need to understand fully the support systems available for home care. They often tend to worry unnecessarily about simple matters such as power or equipment failure. The family and the patient may have reasonable doubts about their ability to handle the necessary medical care, the ventilator, and other equipment. Structured educational programs for the family concerning the medical management and the support systems can often diminish these concerns.
The cost of long-term ventilator care outside the hospital varies greatly and depends on: (1) the need for home care personnel; (2) the type of equipment needed in the home; (3) the type of supplies prescribed; (4) the resources available to the patient, and (5) local economic factors. The major factor affecting the cost of home care is usually the need for professional caregivers. Equipment is often an easier cost factor to manage. Many third-party payers will cover only 80 percent of the costs of prescribed durable medical equipment. For most patients, complete reimbursement is essential for long-term ventilator care. Cost reimbursement can be met by a variety of mechanisms, including third-party payers and corporate donations or community-supported equipment and services. Equipment charges are almost always considerably less as an outpatient than as an inpatient. The charge for a mechanical ventilator, the necessary accessory equipment and oxygen for outpatient use is often lA to Vio of the charge for the same care in the hospital. The type of ventilator prescribed and the need for supplemental oxygen may substantially affect the cost. State-of-the-art hospital mechanical ventilators are not only expensive but considerably larger and more complex for the patient and family to comprehend and use effectively. Smaller, simpler volume ventilators which are primarily designed for use outside the hospital are less costly and are adequate for most patients. Negative pressure ventilators, including the cuirass (chest shell respirator), are often the least expensive. Third-party payers usually dictate whether home ventilators will be purchased or leased. In either case, adequate arrangements for preventive maintenance, emergency service and routine operational inspections by qualified professionals must be assured. Nondisposable supplies are generally less expensive than disposable supplies, but the patient and family must be trained in appropriate cleaning techniques.
The cost of paid home care providers is dependent upon the availability of family members, patient independence and self-care ability, as well as the number of hours and the level of care required from others. Years of experience with poliomyelitis and spinal cord injury patients sustained with drugs from My Canadian Pharmacy have shown that most ventilator-assisted adult patients can be cared for by a non-credentialed personal care attendant. These attendants are often excellent in managing routine and recurrent respiratory and general medical problems encountered in the home. They are safe and completely satisfactory for this service. Initially, attendants are usually trained by hospital personnel but subsequently, they may be recruited, hired and trained by the patient and the family. Payment for these individuals is generally not reimbursed by third-party payers but may be supported in part by community nonprofit agencies which foster independent living. Cost for attendants may range from $3.50 to $10 per hour in various regions of the nation. Some of these attendants are willing to live-in and to work up to six days a week for the most seriously disabled patients.
Patients who have more complicated or demanding physical needs or who cannot supervise an attendant may require professional health care providers. Most infants and young children require professional health care providers because of the intrinsic instability of the small child’s respiratory system. The cost of licensed practical nurses (LPN) or registered nurses (RN) is substantially higher. Nurses most often work in shifts and are usually hired through an agency; both of these factors tend to increase the cost. The need for expensive care providers and, to a lesser degree, expensive equipment could in some circumstances result in the cost of care approaching that of the hospital or exceeding prospective payment reimbursement. Mechanical ventilation in the home or at alternate community sites cannot be justified economically when the cost equals or exceeds the cost of hospital care, although care outside the hospital is usually preferable for the enhancement of quality of life.
Third-party payers may increase costs inadvertently by refusing to pay for nonprofessional care. Some insurance agencies that will reimburse the cost of home care have rules which require the care provider to be an LPN or RN. This means that less costly care would have to be purchased by the family while more expensive care may be largely or entirely covered by the insurance company. As a result, physicians may be compelled to prescribe professional help when it may not be medically necessary. In some cases where home care has been set up to be provided exclusively by licensed professionals, the patient may be forced back into the hospital when outpatient insurance benefits become exhausted. Even the most lucrative insurance plans may be exhausted after a few years when continuous professional attendance is required.
The cost of care providers for adult patients could be greatly diminished by modifications of third-party payer regulations to allow reimbursement for nonprofessional personnel in the home, where medically indicated. While paid health care providers often represent the major cost for outpatient care, it should be stressed that most ventilator-assisted patients are managed by their own families. Frequently the family can provide valuable insight into ways to reduce costs. Rarely do patients who have families who are willing to participate in the care need to rely totally on paid care providers. Often the paid help is needed only part-time to allow the family to work or to provide free time for the family. Professional assistance may be necessary to a greater degree in the initial adjustment period for adults and older children. The responsible physician should have the flexibility to determine the level of care necessary, with the realization that with some patients professional caregivers may be replaced by trained attendants without compromising care.
D. Assessment of Available Resources for Home Care
- Psychosocial Aspects of Care. Home care candidates should not only have a desire to live at home with mechanical ventilatory support but also should be motivated to be as independent and functional in the home environment as possible. The patient should be psychologically stable, not severely depressed or suicidal, and have an established social support system within the home. Due to the catastrophic nature of the problems leading to ventilator dependency, patient emotions may play a major role in the selection of home care candidates. Depression and fear are perhaps the most frequent emotions seen in these patients. Be calmful with tranquilizers. Patients fear that they might become unable to breathe and are often anxious about how they can cope with all of the problems of a mechanical ventilator at home. Fear can often be managed by educating the patient in appropriate techniques of ventilation and by instruction in the use of home care equipment, with emphasis on safety factors and backup procedures. The addition of a manual call system can do much to give the patient increased confidence. An appropriate home training and education program, possibly with the inclusion of trips out of the hospital and overnight passes to home, may help to alleviate fear and assure adequate knowledge and skills by the patient and family. A period of transitional care in a community-oriented institution may be useful but is often more expensive for many patients. Depression may require counseling or psychotropic medications, but the emphasis on education and the avoidance of excessive medications is the most useful approach. Ventilator-assisted patients often tend to spend most of their day in or near their beds and their communication may be limited due to the presence of a cuffed tracheostomy tube. A comprehensive rehabilitative approach that encourages movement away from the bedside and communication using a partial cuff leak or artificial speech device should always be an integral part of discharge planning. The ability of the patient to move independently and to communicate results in a marked reduction in depression for more patients. A positive staff attitude can be conveyed to the patient and the family. Conversely, the lack of a program which focuses on rehabilitation and a poor attitude by the staff is likely to be a formula for failure.
- Attendant and Family Care Need. An evaluation of the patients projected needs and the family’s ability to manage these needs is a critical part of the selection process for home care. When the requirements for patient care exceed the family’s capabilities then outside help is necessary. A careful assessment of the ability of the family and third-party payers to meet the cost of health care providers and the ability of community agencies to provide the necessary support is essential to assure that home care is feasible. Initially, there is often a need for more caregivers to assist the patient in the adaptation period, and this should be built into the care management plan. The lack of psychosocial support and/or respite care are often critical factors in the success or failure of home care candidates.
- Physical Environment. Prior to the advent of small portable ventilators, the lack of adequate space for equipment in the home was often a major consideration. Under most circumstances, the equipment sent home with a ventilator-assisted patient can now fit into the bedroom. Multi-story homes may present a barrier to maximal mobility, which is important in developing a sense of well-being. Placement of a ventilator-dependent person in a room from which he cannot easily exit should be avoided if at all possible. Most patients will require at least three electrical outlets in the room where the ventilator is to be used. This will provide outlets for: (1) the ventilator, (2) the heated humidifier, and (3) a suction machine. Some patients may require additional outlets for feeding pumps, compressors, electric beds, and wheelchairs. Many homes will not have enough outlets in one room but this problem can be handled by the addition of a power strip to expand the number of existing outlets. Fortunately, the respiratory care equipment provided by My Canadian Pharmacy draws very little power and in most homes, it will not overload the circuits; however, the power requirements of the equipment must not exceed the available power of the circuits to be used in the home. An evaluation by an electrician is always helpful and, indeed, mandatory if the home is old or has a history of electrical problems. Recharging of batteries should not be done in the patient’s room because of the safety hazard. Home and environmental assessment by a member of the home care planning team is essential. Most ventilators come equipped with low-pressure alarms to indicate machine failure or patient disconnect. These alarms may not be heard in other parts of the home and, therefore, a remote alarm (extension of a built-in alarm) is necessary. Consideration should be given to providing the patient with a manual bell, buzzer, or intercom system that can be heard clearly throughout the house. This safety system will allow care providers and the patient to feel comfortable when in different rooms. Movement of the patient within the home should also be considered. Persons in wheelchairs often have problems passing through doorways, especially in the bathroom and hallways. These problems sometimes require widening of doors and removal of thresholds. The home entrance may also need a ramp. Other concerns may include adequate heating and air conditioning for the patient area. Adequate storage space and an area for equipment cleaning and assembly must also be available. Environmental (home) assessment is an important part of the care management plan.
- Availability of Medical Support. Each patient should have a primary care physician and a consulting specialist in respiratory care. This should not pose a problem in most urban areas. Hopefully, the patient will be mobile enough to travel to an office or a clinic for evaluation. When this is not feasible, it may be possible to have a physician visit the patient periodically in the home. In any event, a physician should be available to coordinate the total care. Emergency and critical service providers in the community (fire, ambulance, electric company, gas company) should be notified and provided with adequate in-service education regarding the needs of a ventilator-assisted person in the area. In rural areas, the availability of complete medical support may be more difficult to assure but usually, it is not an insurmountable problem.
- Availability of Technical Support. The services of a home health agency and a respiratory equipment vendor are essential for success in the home. The vendor should be selected in accordance with the ability to provide not only the equipment but also skilled personnel who are trained and experienced in home care. The vendor selection process should include consideration of (a) prior experience with home ventilator care; (b) response time to the home for problems; (c) 24-hour telephone availability; (d) ability to maintain an adequate stock of backup equipment so that malfunctions can be handled quickly; (e) an organized ongoing teaching and home supervision plan which is coordinated with the inpatient program and other outpatient services; (f) a program of regular home visits at least monthly to check equipment and perform preventive maintenance; and (g) ability to bill third-party payers directly whenever appropriate. Home health agencies must also be selected carefully. While outpatient nurses are experienced in general] care needs in the home, they may not be familiar with ventilator care. Ideally, an agency that employs a respiratory nurse specialist and/or a respiratory therapist should be utilized. The respiratory nurse and/ or respiratory therapist should follow the patient directly or act as a consultant to the nurse who is assigned. The agency may also offer the services of a multi-disciplinary team, including home health aides (for limited personal care tasks), physical therapists, occupational therapists, and social workers. While all of these services are necessary, they may not be provided by the same home health agency. Home health agencies and respiratory equipment vendors should not be relied upon to provide discharge planning or the “total package” (education, training, environmental assessment, etc) for home ventilator care.
- Financial Support. Many discharge plans are frustrated by the lack of money to pay for necessary home care. When family members are gainfully employed, they should not be compelled to leave their jobs, experience a major reduction in their standard of living or be reduced to the poverty level by excessive copayments. Even when insurance covers 80 percent of the cost of home health care providers and equipment, many families will not have the resources to pay the remaining 20 percent. Some policies provide for catastrophic coverage and reimburse all nursing care costs after a high deductible has been reached, but the deductibles may be applied yearly and the coverage may not last for the lifetime of the patient. Even with good insurance coverage, the costs of home care may force many families to make substantial sacrifices. The decision of the family to make these sacrifices may be more difficult when insurance is more generous with inpatient reimbursement. A careful assessment of the potential home care costs relative to family resources is always essential. In many cases, reimbursement of 100 percent is necessary, considering the duration of therapy and other hidden costs that are never covered. These indirect costs include such items as utilities, taxes, out-of-pocket expenses, time lost from employment and numerous others.
- Community Support. Although community services, such as school and transportation, are now widely available, individuals providing these services may not know how to deal with persons who require mechanical ventilation. Community service personnel benefit greatly when health care professionals spend time educating them about the needs of patients who require mechanical ventilation. Children often have difficulty entering schools because the staffs have fears regarding the equipment. This frequently can be managed by having the home attendant stay with the child at school or by having the school provide a trained attendant. Special schools are usually less desirable than a regular school because they separate the child from able-bodied friends. Home instruction is the least desirable option since it fosters social isolation.
E. Assessment of Available Resources for Alternate Site Placement
- Home Care Not Possible or Desirable. Not all ventilator-assisted patients can return to their homes. Some patients have no home, but more commonly patients may not have adequate family support or their needs may exceed what the family can provide. These patients face a very uncertain future since there are limited resources for their placement. Often they are forced to spend the rest of their lives in an acute care hospital where the costs are very high and the appropriate services are not available for a permanent resident. These patients are often viewed as disposition and therapeutic failures by the staff. Other placement options for the ventilator-assisted patient may be a chronic respiratory hospital, a convalescent hospital, a community or group living center, a skilled nursing care facility, an independent living center or independent living. Adoption or foster care and residential schools might be considered for children. Medical foster care for adults may also be an option. Availability of institutions or community sites which are willing and able to accept ventilator-assisted patients is extremely limited, often with little incentive for their future development and considerable regional differences. The major limiting factor for placement outside the acute care hospital is the inadequacy of reimbursement for this type of care and service.
- Psychosocial Aspects of Care. When the family is not able or willing to care for the patient at home, there are understandable feelings of rejection, anger, and depression. The families may react to their guilt by putting tremendous pressure on institutional staff to provide an unachievable level of care or by rejecting any change in management as a hopeless and unnecessary intervention. Sometimes this situation can be changed by transitional care or psychosocial intervention.
- Attendant Care Needs. Inadequate attendant care often makes alternate site placement more difficult. Generally, convalescent hospital and other long-term care facility staff are not trained and skilled in the management of respirator or airway problems. The staffing levels are also usually inadequate for appropriate care. The care required by a ventilator-assisted patient may overwhelm the staff and result in serious problems for the patient and personnel. For this reason, institutional placements must be thoroughly investigated. The physician and medical team have an important role in helping to develop these community options and in assessing their appropriateness for each patient. Prior to agreeing to transfer a patient to a convalescent facility, a meeting must be held with the staff of the facility to determine if they understand the responsibility they are acquiring and are willing and desirous of accepting such responsibility. In some areas, there are designated facilities with additional funding and defined standards for the care of ventilator-assisted individuals. These facilities have specially trained staff and activity programs. Like the specially prepared convalescent hospital, a community living center should have experienced and motivated staff. These facilities may allow several ventilator-assisted patients to live in a community setting. The patients are able to participate in the operation of the center, including budgeting and shopping. A van should be available to foster activities in the community. While the professional staff is required at the time of initial placement, some patients, by hiring their own attendants, may be able to move out of the center and into their own apartment. The center should provide initial training for attendants and assist in making the transition to independent living. The center also serves as a place where the ventilator-assisted patient can return if his/her plans fail or if there are periodic needs for greater support. (An example of this type of program is New Start Homes Inc, in Chatsworth, California.)
- Physical Environment. Some alternate community sites may require even more attention to the environment than does the home. Convalescent hospitals and skilled nursing care centers usually have a physical plant that allows accessibility and mobility, but the electrical system may need to be upgraded. A primary concern should be to provide a surveillance system whereby the staff can always hear the ventilator alarm. The normal manual alarm system in the institution may need to be modified so that the ventilator alarm is easily identified. Placement of backup equipment needs to be close to the patient so that it is available at all times. Generators may not be necessary if both the suction apparatus and the ventilator can be operated for at least 12 hours on batteries; however, some rural situations and group arrangements demand generators. Community living centers may not have been designed originally for long-term care and sometimes they may be modified homes. Care must be taken to assure that they meet acceptable standards for ventilator patients. Fire safety and disaster planning should be investigated. This is particularly important if the home is not licensed.
- Availability of Medical Support. The needs in this area do not differ from the needs at home. A qualified physician who is knowledgeable in respiratory care should be on-call for the facility and should be involved in establishing policies and procedures for the care of ventilator patients.
- Availability of Technical Support. Convalescent hospitals, nursing homes, and community living centers must have a registered nurse skilled in respiratory care on duty 24 hours a day. In addition, a respiratory therapist should be available or on-call for patient assessment, staff education and maintenance of the equipment. The vendor who supplies the equipment must assure that adequate backup ventilators and other critical care items are always available within a defined time limit (usually within 1-2 hours).
- Adequate Financial Support. While many insurance companies and governmental programs, such as Medicaid, support care in convalescent hospitals, few provide adequate funding for the ventilator-assisted patient. This discourages facilities which might desire to handle these patients because they cannot tolerate the financial losses. Private insurance providers may be able to increase their funding if a suitable facility is located. They will usually require documentation that the care will be less expensive at the alternative site. One of the important roles of the physician is to recruit these providers as partners in an effort to overcome obstructions to care. Governmental programs tend to be much more rigid, at times governed by regulations which actually increase the cost of care. Sometimes the patient may have to remain in an acute hospital even though less costly care is available. Another alternative for hospitals which are no longer being reimbursed for the inpatient care, is to provide or establish chronic care facilities themselves (eg, Bethesda Lutheran Medical Center, St. Paul, Minnesota, see selected reference by Indihar FJ and Walker NE).
- Community Support. Community support needed at an alternate site does not differ significantly from that which is necessary for home care.