© 2005 American Thoracic Society doi: 10.1164/rccm.2504001
Statement on Home Care for Patients with Respiratory Disorders
Executive Summary Introduction Definition and Models of Home Care General Goals of Home Care Establishing the Need for Home Care Services Medical Diagnoses and Therapies Commonly Requiring Home Care Guidelines for Referral for Home Care Needs of Respiratory Home Care Patients Skills and Competencies Expected of Home Care Providers Episodic Home Health Hospice Home Medical Equipment Companies Chronic Home Care Services Role of the Physician Home Health Assessment Home Health Interventions and Treatments Medications Oxygen Therapy Smoking Cessation Pulmonary Rehabilitation Psychosocial Aspects of Home Care for Patients and Families Palliative and End-of-life Care Outcomes of Home Care Mortality Functioning and Health-related Quality of Life Positive Health Behaviors Patient and Caregiver Satisfaction Hospital Readmission, Emergency Care, and Related Outcomes Cost and Reimbursement Issues Cost of Home Care Cost-effectiveness of Home Care Payment Structure in the United States Future Directions for Practice and Research Conclusions
This statement defines home care as currently provided in the United States, identifies respiratory disorders that may require home care, determines the care needs of individuals with such disorders, delineates expected skills and competencies of providers, and describes key aspects of respiratory home care. The statement also addresses psychosocial issues, palliative and end-of-life care, outcomes, cost, reimbursement, and future directions for practice and research. In the United States, home care includes home health care (episodic, often postacute care provided on an intermittent basis), hospice (palliative and end-of-life care provided for the terminally ill), chronic home care services (private duty services provided on an hourly basis), and home medical equipment (e.g., oxygen, respiratory equipment, nebulized medications, infusion therapy, and in-home supplies). Medicare is the largest single source of payment for home care services to respiratory patients; home health nurses and other home health personnel provide skilled and other care according to federal regulations for Medicare. General goals of home care for individuals with respiratory disorders are to increase survival, decrease morbidity, improve function and quality of life, support independence and self-management, encourage positive health behaviors, and promote optimal growth and development of children with lung disease. For patients with terminal illnesses, home care goals include physical and psychological comfort, and making dying at home possible. This document is relevant for nurse specialists, chest physicians, pulmonologists, and other health care providers who would benefit from understanding U.S. models of home care. Home care services can offer great potential for patients with respiratory disorders, especially pediatric and geriatric patients, by reducing the amount of time they must spend in the hospital during an acute illness event, or removing altogether the need to be admitted to hospital. The evidence suggests that home care does not have negative effects on patients and, in the case of supported early discharge, there is now fairly strong evidence that home care may reduce the risk of admission to long-term care or hospital readmission. Home care service is thus an important option for nurse specialists, clinicians, chest physicians, and pulmonary specialists to consider in their "tool kit" of community-based interventions available to help patients live with respiratory disorders and maintain their independence. However, there are some important issues that must be addressed to understand who best can benefit from home care services. The U.S. Medicare system has made substantial cuts in the amounts of money available for the delivery of home care, so judicious use is essential. The guidelines in the American Thoracic Society (ATS) document on Home Care for Patients with Respiratory Disorders can be used to establish the need for referral for home care, including identification of those patients with respiratory disorders who have received appropriate hospital care, but could be discharged from the acute care setting to release beds (and save money). It is particularly important for the pulmonary specialist to understand the role of all members of the home care team and communicate explicitly with the primary care clinician and others on the team. The statement is relevant to those who would understand the varied competencies expected from providers of home care services, differentiate available services and psychosocial aspects of home care and palliative care, be sensitized to cost and reimbursement issues, and finally appraise future directions for practice and research. Home care for respiratory patients in the United States includes a complex array of services delivered in an uncontrolled setting in which patients and families are integral members of the health care team. In Europe, new models for treatment of a variety of medical and surgical problems, including acute chronic obstructive pulmonary disease (COPD) exacerbation, are being implemented. In supported discharge or hospital at home programs, patients are assessed for early hospital discharge with follow-up by respiratory specialist nurses through frequent telephone contact and home visits as needed. Another model under investigation is the acute respiratory assessment service, in which patients with COPD with acute exacerbations are assessed for suitability to manage the exacerbation at home with support from a home care team. Chest physicians or pulmonologists or nurses determine eligibility for home management on the basis of assessment protocols in the emergency room, with follow-up as in supported discharge models. A third model of care management community-based service is composed of respiratory specialist nurses and physical therapists who make regular, although infrequent, visits to patients with COPD with more than three hospital admissions in the previous year. In this chronic care management service, patients receive education and support, and can call the service during regular business hours with questions or concerns. Chest physicians, pulmonologists, generalists, and nurse specialists providing care need clinical knowledge and skill, a patient-centered perspective, and understanding of the cost and reimbursement structures for home care services. Complexity, lack of provider control, and chronicity of patient health problems all likely contribute to the difficulty in demonstrating improved patient outcomes resulting from home care. Future efforts at identifying effectiveness of respiratory home care will be most successful if they take these factors into account. Home health agencies, nurses, chest physicians, pulmonologists, and other providers, and their advocates, can contribute to a societal discussion on reframing the goals of home care to include those that are both desirable and achievable. Future goals may include patient and family satisfaction, reduction of complications resulting from hospitalization, maintaining an acceptable quality of life, and enabling a comfortable and dignified death. Cost reduction could become a collateral benefit, instead of a primary goal for home health care.
This statement is a revision of the original American Thoracic Society (ATS) position paper "Skills of the Health Team Involved in Out-of-Hospital Care for Patients with COPD" (1), which identified the competencies of the health care team providing outpatient and home care services to patients with COPD. The revised statement is written primarily from the U.S. perspective, but incorporates international research and practice principles throughout. In fact, much research on newer models for home care has been conducted in Europe, Canada, and Australia, with relatively less innovation in the United States. These research studies have implications for care in the United States, and therefore constitute an important part of this statement.
Home care is the provision of services and equipment in the place of residence of individuals and families who have needs resulting from acute illness, long-term health conditions, permanent disability, or terminal illness (2, 3). In the United States, home care includes home health care (episodic, often postacute care provided on an intermittent basis), hospice (palliative and end-of-life care provided for the terminally ill), chronic home care services (private duty services provided on an hourly basis), and home medical equipment (oxygen, respiratory equipment, nebulized medications, infusion therapy, and in-home supplies; Figure 1). In this statement, the term home care subsumes all four service categories, and the terms home health care and home health care agency refer primarily to episodic care provided by Medicare-certified home health agencies as ordered by the physician. Home health nurses and other home health personnel provide skilled and other care according to federal regulations for Medicare. Federal regulations also dictate the care provided by Medicare-certified hospice agencies. Because Medicare is the largest single source of payment for home care services to respiratory patients (3), the primary focus of this statement is on the service delivery models mandated by the Medicare program. Episodic, postacute home health care is limited to a discrete time frame, often triggered by hospitalization or a new diagnosis. Hospice services are provided for patients with a predicted life expectancy of 6 months or less who have elected palliative rather than curative care. Chronic care services include private duty nursing services, home health aide, and chore services to support and maintain chronically ill adults and children at home in collaboration with family members. Home respiratory equipment and related services may be part of a long-term management plan for patients receiving any or none of these other services.
In Europe, new models for treatment of a variety of medical and surgical problems, including acute COPD exacerbation, are being implemented. In supported discharge or hospital at home programs, patients are assessed for early hospital discharge with follow-up support by home care personnel (4–7). A typical hospital at home scheme provides follow-up by respiratory specialist nurses through frequent telephone contact. Home visits are made when the patient's condition or ability to manage the care suggests they are necessary. Another model under investigation is the acute respiratory assessment service, in which patients with COPD with acute exacerbations are assessed for suitability to manage exacerbation at home with support from a home care team. Chest physicians or pulmonologists or nurses determine eligibility for home management, using assessment protocols in the emergency room, and home care follow-up is usually similar to that for supported discharge (8–11). A third model of care management of patients with COPD in the United Kingdom has been described (12). A community-based service composed of respiratory specialist nurses and physical therapists makes regular, although infrequent, visits to patients with COPD with more than three hospital admissions in the previous year. In this chronic care management service, patients receive education and support, and can call the service during regular business hours with questions or concerns.
General goals of home care for individuals with respiratory disorders are to increase survival, decrease morbidity, improve function and quality of life, support independence and self-management, encourage positive health behaviors, and promote optimal growth and development of children with lung disease. For patients with terminal illnesses, home care goals include physical and psychological comfort, and making dying at home possible (13). In keeping with contemporary models of patient-centered care and the unique nature of the care setting (i.e., the patient's home), specific goals of care for individual patients are negotiated by patients and families in partnership with home care professionals and the responsible physician (14–18). In addition to benefits for individual patients, home care is sometimes used to meet societal goals to reduce total health care costs, primarily by reducing acute care hospital days (19). For example, the movement of acute care services formerly provided only in hospitals (e.g., mechanical ventilation, infusion therapy) to the home setting is driven, in part, by the desire to reduce costs of prolonged treatment of acute problems such as infection, or chronic problems such as respiratory failure (13).
Medical Diagnoses and Therapies Commonly Requiring Home Care Acute and chronic disorders that may require home care are listed in Table 1 (20). The most common diagnosis of patients with respiratory disorders referred for home health care is COPD (21). Approximately 11.1% of the 7.6 million patients receiving home health care in 1998 had respiratory system disease as their primary diagnosis (22). COPD and pneumonia are, respectively, the fourth and fifth most frequent reasons for hospital discharge of Medicare patients to home care, respectively (3). Patients with other diseases receiving home health care who may have significant respiratory care needs include those with paralytic syndromes (1.8% of those receiving home health care), and malignant neoplasms of the trachea, bronchus, and lung (0.9%) (21).
Complete data on the number of children receiving home care services for chronic respiratory-related conditions are not available, although some data are available for children with cystic fibrosis receiving home medical therapies. In 2003, 19.6% of patients with cystic fibrosis received one or more courses of intravenous antibiotics at home, 6% received home oxygen therapy, and 8.9% used supplemental tube feedings at home (23). Traditionally, a wide range of medical, nursing, and respiratory therapies has been delivered in the home, including continuous oxygen therapy, inhalation (nebulizer) therapy, tracheostomy care, and others (24). In the past 20 years, the frequency with which other treatments are delivered in the home has increased. These therapies that may involve pulmonary specialists include continuous positive airway pressure therapy for obstructive sleep apnea in adults and children (25), home apnea monitoring, administration of intravenous medications, and mechanical ventilation. The number of ventilator-dependent patients doubled from 1980 to 1990, with about 20% of the estimated 11,419 patients being cared for at home (26).
Guidelines for Referral for Home Care Garrard and colleagues (31) developed a "Need for Home Health Services Check List" using expert consensus, including nurses, to identify health, psychosocial, and behavioral problems, and education and coordination needs suggesting the need for home health services after hospital discharge. Although adequate interrater reliability has been reported (31, 32), construct validity of the scale remains to be established. The chest physician or pulmonologist can use the scale as a guide to identifying the need for home health care referral, but without evidence for predictive validity, clinical judgment is the deciding factor in whether to order home care referral. Discharge criteria for mechanically ventilated patients have been developed on the basis of expert consensus, and include medical, respiratory, and psychological stability, and the existence of a comprehensive discharge plan (26). Gilmartin (33) identified criteria specific to home management of chronically ventilated patients (Table 2). It is important to note that both of these sets of criteria indicate readiness for discharge, not criteria for referral to home care. The American Association for Respiratory Care (34) has developed a clinical practice guideline for hospital discharge planning for respiratory patients going to any setting, including the home. The guideline includes assessment of the patient's medical needs, the site to which s/he will be discharged, and financial resources available for posthospital care. Education and training needs of patients and families must also be assessed, preferably by the respiratory clinicians.
The American Academy of Pediatrics (35) developed guidelines for home care referral for infants and children with chronic disease that include patient, family, home, and community factors that should be in place before the child is discharged. Although not specific to respiratory patients, these factors constitute important criteria for discharge of infants and children with chronic respiratory disorders. The guidelines call for an individualized health care plan to be in place before discharge. Patients, families, a designated case manager, and interdisciplinary team members representing all sites in which care will be provided must be involved in planning for home care. For respiratory patients, the pediatric pulmonologist can play a central role. The evidence base for appropriate home care referral for respiratory patients is evolving. On the basis of a consensus of clinical experts and existing knowledge about home care outcomes, the ATS recommends that referral be considered for respiratory patients if one or more criteria in Table 3 are present, as evaluated by clinician specialists, chest physicians, or pulmonologists.
Needs of Respiratory Home Care Patients Adult and pediatric patients with respiratory disorders living at home may have a wide variety of medical, functional, psychosocial, developmental, and advance care planning needs. These needs are best addressed using a patient- or family-centered model, because the provision of home care services occurs in the patient's context and the provider is a visitor in that setting. A multidisciplinary health care team is needed to address the patient's holistic needs. The developmental needs of children with respiratory problems that improve over time are different than the needs of adults with similar problems. Children must have early services so that they can achieve normal age-dependent function as a respiratory impairment improves (36). Although the assumption that children develop more normally at home than during prolonged hospitalization has not been studied in controlled clinical trials, some reports have documented normal development among ventilator-dependent children who remain at home (37, 38). Ideally, home health professionals, including nurses, chest physicians, and pediatric pulmonologists, work with parents to develop a daily plan of care that maximizes their child's developmental potential.
Episodic Home Health Home health care providers are expected to assist patients and their caregivers to manage day-to-day living with respiratory disease and disability, identify and respond to complications, and use respiratory equipment and procedures safely. Determination of which disciplines are involved in an individual patient's care is based on the primary problems identified and the reimbursement mechanism supporting home care. Disciplines covered by Medicare to provide home health services include registered and licensed practical nurses, physical and occupational therapists, speech–language pathologists, social workers, and home health aides. Most patients, and particularly those with active comorbid conditions and a high risk of developing complications beyond the respiratory system, require referral by the physician to a home health registered nurse (39). A patient with primary problems of deconditioning, impaired mobility, or the need for home adaptation is best served by referral for physical or occupational therapy. If the primary need is for assistance with ADLs or IADLs, services offering home health aide assistance should be explored. Medicare reimburses for personal care only if skilled nursing or rehabilitation services are also required as determined by the physician's evaluation of the patient's medical condition. Limited chore services are available within the context of home health aide delivery of personal care services. Nurses who provide home health care in the United States and Canada are generalists who care for patients with a wide range of medical diagnoses (40). They provide skilled care for patients within the context and challenges of the home environment, integrating interventions into the complex interactions between physiologic, family, and environmental needs (41). Home health nurses must be able to function independently and develop collaborative relationships with family members and interdisciplinary team members (14, 17, 18). Care coordination by nurses is common for patients with multiple comorbid conditions and for patients who receive services in addition to those provided by the home health agency (42). Nurses are the primary link to the chest physician or pulmonologist when patients receive home health care. A taxonomy of required practice elements for home health nurses has been developed (Table 4 [43, 44]).
Home health specialty programs, including home management of respiratory patients, were developed in the early 1980s in an effort to provide comprehensive care to complex, chronically ill patients (45). Health care cost containment efforts and an inability to demonstrate cost-effectiveness of specialized respiratory home care services (46–48) led to eventual discontinuation of most of these programs. More recently, earlier discharge of even sicker patients and marketplace competition have again created a call for specialty practice in the home setting (49, 50). One example described by Nemcek and Egan (51) is a pulmonary disease management program among five specialty programs in place in their agency. A quasi-experimental study of a respiratory specialist advanced practice nurse (APN)-directed home health intervention for patients with COPD within parameters determined in consultation with pulmonologists found somewhat better patient outcomes compared with patients receiving usual home care, suggesting that availability of a respiratory clinical nurse specialist for consultation and education may be of benefit (52). Naylor and colleagues (53) suggested that cost reductions in an APN-led home health intervention could be attributed to the fact that the APNs were gerontologic, not disease-focused, specialists. These master's prepared gerontologic specialists were able to address comorbid conditions, combined effects of multiple health problems, and social issues, not only the needs related to the diagnosis causing the index hospitalization, and communicate early with the physician specialist. Traditional Medicare does not reimburse for the in-home services of respiratory therapists (RTs), but private insurance or Medicare Health Maintenance Organizations (HMO) providers may provide reimbursement for these services. Because Medicare now reimburses home health agencies for a physician-ordered episode of care (usually 60 days) rather than for each home visit, there may be an opportunity for home health agencies to use RTs for home visits. Whether use of RTs is permissible reimbursement remains an unresolved question, because RT services are excluded from Medicare home health care reimbursement by statute.
Hospice
Home Medical Equipment Companies Home infusion therapy companies provide intravenous medications and fluids, enteral or parenteral nutrition, and other injectable therapies. These vendors employ pharmacists to prepare prescribed medications and solutions, and registered nurses who have specialized training in infusion therapy. Registered nurses providing infusion therapy must have the skills to teach the patient how to safely administer prescribed medications using the home infusion equipment, monitor expected and untoward responses, communicate with the prescribing physician, and respond to complications (57, 59). Large companies generally provide both respiratory and infusion services and also may provide bathroom and other adaptive equipment.
Chronic Home Care Services Comprehensive discharge planning that emphasizes clear communication among patient, family, and an interdisciplinary care team is required to ensure successful home care for MFTD children (35, 60, 61). Communication between hospital-based staff, chest physicians/pulmonologists, and providers who will take over patient care after the transition to home is also essential (60). In most situations, family members will provide the majority of direct patient care, but referrals to home care agencies providing hourly care are often required to allow family members to sleep, rest, do household activities and errands, care for other family members, maintain relationships, and work outside the home (62, 63). Parents of MFTD children expect nurses and physicians to work respectfully and collaboratively with the family, and to allow parents to direct the care of their child (64). They expect nurses and physicians to provide safe, competent, skillful care, delivered with the same level of attention and care that parents themselves use (64, 65). Parents view home care nurses as a resource for increasing the ability of family members and respite care providers to provide quality care through education and training (66). Parents also want nurses to educate the family about available resources, and to help secure these resources through advocacy. Communication among nurses, physicians, and family (65), and recognition of professional boundaries and respect for the family unit, are highly valued (65, 67).
Role of the Physician Medicare and other payers require that the physician direct the provision of home health care by the interdisciplinary care team through on-going oversight of the treatment plan. The physician determines the patient's medical needs, approves a treatment plan and orders that meet those needs, and monitors implementation of the plan (35, 70). The physician may assume the role of case coordinator, but is more likely to delegate this role to the home health nurse or other home care agency personnel. Most physicians, including specialists, report that they work with home health agency or hospital staff to determine home health services needed by patients (71). Regular communication between the physician, the case coordinator, and other home care agency personnel is critical to assure that patients receive appropriate clinical care, and that treatment plans are updated and approved when the patient's condition changes (69). Home care agencies are increasing their use of technology and telemedicine programs to send reports and treatment plan changes to physicians (69, 72). Effective electronic modes of communication, telemedicine, and other home care technologies exist but are beyond the scope of this statement.
When episodic care is provided by a Medicare-certified home health agency, under physician orders, the initial home visit is usually made by a registered nurse. General assessment includes relevant history, examination of body systems, and evaluation of the patient's management of and response to medications and treatments. The nurse also evaluates challenges to management of the respiratory condition presented by the living environment, the impact of disease on day-to-day living, the degree to which institutional teaching has been transferred to the home setting, and the effectiveness of family coping. Focused assessment of functional status, potential safety problems, ability to access emergency help, psychosocial and learning needs, patient/family coping resources, and end-of-life issues are also addressed as indicated. Parameters for in-home assessment of chronic respiratory patients are shown in Table 5. In-depth respiratory assessment includes: pulse oximetry at rest and with ADLs, IADLs, walking, or exercise; a peak expiratory flow rate or portable spirometry; and, if indicated, home apnea monitoring. Observation of inhaled medication technique, evaluation of airway clearance maneuvers, and management of home respiratory equipment are other components of a thorough respiratory assessment. After the nurse clinician's visit, contact is made with the generalist physician, chest physician, or pulmonologist to verify medical care.
The home health plan of care is based on assessment findings and the physician's determination of medical needs. Frequently prescribed home health interventions for common respiratory conditions are described in detail below. Detailed discussion of less common therapies (e.g., home apnea monitoring, care of adults and children using invasive or noninvasive mechanical ventilation, etc.) are not included in this document. Comprehensive clinical practice guidelines, other guideline statements, and position statements already exist for such specific patient problems. The reader is referred to the website of the National Guideline Clearinghouse initiative of the Agency for Healthcare Research and Quality (AHRQ; www.guideline.gov), other guidelines websites (e.g., the Institute for Clinical Systems Improvement; www.icsi.org/index.asp), and other professional organization statements including medical assemblies of the American Thoracic Society (www.thoracic.org), the American College of Chest Physicians (www.chestnet.org), the American Association for Respiratory Care (www.aarc.org), and the American Academy of Pediatrics (www.aap.org).
Medications The National Asthma Education and Prevention Program (74) recommends inhaled steroids for mild, persistent asthma in patients of any age; low- to medium-dose inhaled steroids plus a long-acting ß2-agonist for moderate and severe, persistent asthma; and high-dose inhaled steroids plus a long-acting ß2-agonist and oral corticosteroids as needed for severe, persistent asthma. Antibiotics are recommended for treatment of exacerbations only when there is fever and purulent sputum, pneumonia, or bacterial sinusitis. Nebulized tobramycin and colistin are commonly administered to patients with cystic fibrosis for maintenance therapy (75–77). Nebulized tobramycin has also been effective against Pseudomonas aeruginosa infection in patients with bronchiectasis (78). Acute, serious exacerbations generally require intravenous administration. Primary pulmonary hypertension may be treated by continuous intravenous prostacyclin infusion. Treatment may include oral anticoagulants, diuretics, and calcium channel blockers (79). Administration of oral or parenteral opiates may reduce severe dyspnea that cannot be controlled by nonpharmacologic measures (80, 81). Successful home administration of medications requires knowledge of the drugs and administration techniques and adherence to the medication regimen. Patient nonadherence with prescribed medications is well documented. In one study, a sample of 342 patients at high risk for rehospitalization was counseled regarding medications to be taken at home (82). At a home visit 1 week later, nearly half the patients had mixed the discharge medications with preexisting supplies or medications prescribed by other practitioners. Approximately half of those patients for whom a pill count could be made were nonadherent with medications prescribed at discharge. Most patients could not identify adverse effects or special instructions for prescribed medications. The only predictor of nonadherence was the number of prescribed medications. Of concern to nurses, chest physicians and pulmonologists is medication noncongruence between 74% of physician and clinic patient pairs (83). Yang and coworkers (84) studied adherence in 50 elderly patients, without cognitive impairment, who were instructed to bring all their medications to a clinic visit. A subsequent home visit was conducted to determine medications actually taken. When clinic and in-home medication lists were compared, nearly half the clinic lists missed at least one medication being taken at home. Omitted prescription medications included such drugs as oxycodone, warfarin, and insulin. Barat and coworkers (85) found that living alone, dementia (i.e., a Mini-Mental State Examination score below 24), more than one prescriber, and three or more prescribed medications were associated with nonadherence. Gray and coworkers (86) found that 44% of 147 elderly home health agency patients were over- or underadherent with at least one medication. Risk of nonadherence increased with Mini-Mental State Examination scores below 24 and with each added prescribed medication. Medication knowledge alone did not predict adherence. Ho and colleagues (87) administered knowledge questionnaires to parents of asthmatic children as part of a longitudinal study on treatment adherence. Knowledge scores did not predict medication adherence or asthma outcomes, such as number of emergency room visits. The investigators could not support the assumption that knowledge directly leads to improved self-management and health outcomes and emphasized the complexity of factors associated with adherence. Poor adherence has been demonstrated with use of metered dose inhalers (MDIs) (88–91), and loss of correct technique over time has been shown as well (92, 93). Incorrect MDI use has been correlated with asthma instability (94). Addition of a spacer reduces technique problems related to coordination of firing and inhalation (95). Although dry powder inhalers (DPIs) are more often used correctly (96–98), technique errors are possible, particularly in elderly patients (99). Because MDI and DPI administration techniques differ, patients must be able to demonstrate the correct technique for each device. The risk of incorrect use may increase when patients use both MDIs and DPIs (100). Patients must also know how to determine the number of doses remaining. DPI dispensers that include medication counters may be preferable to MDIs (101) because floating an MDI canister in water may cause contamination (102). Patients must clean the device and spacer correctly. To reduce the accumulation of electrostatic charge that decreases respirable dose, spacers should be washed with diluted household detergent, left unrinsed, and allowed to drip dry (103). APNs, chest physicians and pulmonologists must assess multiple factors in making prescribing decisions, including patient cognition, dexterity, and administration skill. Home nebulizers are used to deliver maintenance antibiotic therapy for patients with cystic fibrosis or bronchiectasis. Nebulizers are preferred for patients with asthma or COPD if they are unable to master MDI or DPI technique despite repeated instruction, have an extremely low inspiratory capacity or flow rate, cannot breath hold, or need high bronchodilator dosages (104, 105). Home nebulizers are potential reservoirs for respiratory pathogens, among them Staphylococcus aureus and Pseudomonas aeruginosa (106, 107). Although no evidence-based guidelines exist for cleaning of home nebulizers, usual recommendations include rinsing after each use, disinfecting three times per week, and air drying (108). Quaternary ammonium compounds have been shown to be effective against both S. aureus and P. aeruginosa, whereas acetic acid (white distilled household vinegar) has been shown to be effective against P. aeruginosa but ineffective against S. aureus (109). However, washing with household detergent removes S. aureus (110). Thus washing followed by a vinegar soak has been accepted practice. Chatburn and coworkers (110) compared the effectiveness of two concentrations of acetic acid, quaternary ammonium compound, and household detergent against a mixture of P. aeruginosa, S. aureus, and Pseudomonas cepacia. Washing in detergent followed by a 60-minute soak in a 1.25% acetic acid solution (1 part vinegar to 3 parts distilled water), then air drying, was as effective as detergent washing followed by a 10-minute soak in a quaternary ammonium compound solution, then air drying. However, neither technique removed all organisms. Note that quaternary ammonium solutions can be reused and are less expensive over time than acetic acid solutions. More stringent home nebulizer cleaning guidelines are recommended for patients with cystic fibrosis and include: detergent prewashing; disinfection by boiling, immersion in bleach, alcohol or hydrogen peroxide; rinsing with sterile or filtered water; and air drying. These guidelines recommend against use of acetic acid (111). Riethmueller and colleagues (112) found in-home administration of intravenous antibiotics for patients with cystic fibrosis with chronic P. aeruginosa infection to be as effective as in-hospital administration. Community-acquired pneumonia and COPD exacerbations have also been treated by intravenous antibiotic administration in the home. However, patients must be evaluated for factors precluding safe home administration, such as no telephone, active substance misuse, history of anaphylaxis, unsafe home situation for home care staff visits, or language barriers that cannot be overcome by interpreter use (75, 113). Patients or their caregivers must be able to recognize complications, including loss of access, infection, and drug side effects (113). The recommendation of a European Consensus Conference is that the first dose should be administered in the hospital setting under medical supervision (75). However, several studies examining cost-effectiveness of outpatient intravenous therapy in the United States and Canada reported that treatment often started in an outpatient setting (114–116). The role of a team's (as nurse, physician, pulmonologist) communication was critical in providing safe and effective pharmacotherapy. Exploring barriers to adherence, providing education, and assisting patients to use medications correctly are essential in-home interventions. If patients are to adhere to their prescribed regimens, it is necessary to ensure correct administration technique, assist in the development of a realistic medication schedule, teach how to order medications, and ensure correct maintenance and cleaning of the administration system. Involving family caregivers is indicated for cognitively impaired patients. Fostering communication among multiple prescribers, such that a chest physician or pulmonologist is aware of the number of drugs a patient is taking, may reduce polypharmacy or complexity of medication regimens (117–119).
Oxygen Therapy Current ATS guidelines stipulate LTOT for a PaO2 less than or equal to 55 mm Hg (or an SaO2 less than or equal to 88%). LTOT is also recommended for patients with cor pulmonale who have a PaO2 of 55–59 mm Hg (or an SaO2 less than or equal to 89%) and EKG evidence of "P" pulmonale, hematocrit greater than 55%, or congestive heart disease. ATS standards (123) recommend an arterial blood gas analysis rather than pulse oximetry to initially establish long-term oxygen need. Evidence suggests that 30 to 60% of patients who initially qualify for LTOT no longer qualify when retested 1 to 3 months later (124, 125). Current recommendations for patients initially prescribed LTOT at hospital discharge are for physicians to retest after 90 days (126). Concentrators, liquid oxygen, and compressed oxygen are used to deliver LTOT. Oxygen concentrators are the least expensive but do not deliver 100% oxygen or usually permit portability. Only one portable concentrator is currently Medicare approved. Concentrators deliver at least 95% oxygen when the flow rate is less than or equal to 2 L/min. Liquid systems are costly but deliver 100% oxygen regardless of flow rate and easily transfill portable containers. Compressed oxygen systems deliver 100% oxygen and are supplied in heavy cylinders designed for stationary use, and in light-weight aluminum cylinders designed for portability (127). Cost containment efforts have driven development of oxygen-conserving devices, such as pulsed systems that deliver oxygen only during early inspiration. Some oxygen-conserving devices deliver insufficient oxygen during activity (128, 129). Patients must have the oxygen flow rate individually titrated for the specific device to be used (126, 130, 131). The Nocturnal Oxygen Therapy Trial empirically recommended increasing the oxygen dose by 1 L/minute during sleep for patients hypoxemic at rest (120). Plywaczewski and colleagues (132) confirmed desaturation during sleep in nearly half of patients with COPD who were receiving a nocturnal oxygen flow rate sufficient to maintain a daytime PaO2 greater than 60 mm Hg. Mohsenin and colleagues (133) found that daytime oxygen saturation values did not accurately predict nocturnal oxygen need, but continuous oximetry monitoring during sleep permitted precise dosing (123). Note that oxygen supplementation in nocturnal hypoxemia without daytime hypoxemia at rest has not demonstrated a long-term survival benefit (134, 135). O'Donohue and Bowman (136) recommend sleep studies for patients without daytime hypoxemia who exhibit right heart failure or other clinical evidence of nocturnal desaturation to determine the need for oxygen or other therapy. Supplemental oxygen reverses exercise-induced hypoxemia and may improve exercise performance (137). However, the long-term benefit of oxygen supplementation for exercise-induced hypoxemia without hypoxemia at rest has not been clearly demonstrated and remains controversial (131, 138). Although the Nocturnal Oxygen Therapy Trial empirically recommended increasing the oxygen dose by 1 L/minute during exercise for patients hypoxemic at rest, current guidelines recommend dose titration to achieve an SaO2 exceeding 90% during exertion (123, 126, 131, 139). A walking protocol using pulse oximetry to determine dose requirements produced comparable results in hospital and home (140). Supplemental oxygen is recommended for chronic lung disease of infancy to promote repair of developing lungs, provide adequate exercise tolerance, and reduce pulmonary arterial hypertension and right ventricular workload. Monitoring oxygenation is essential during activity, feeding, and sleep, when oxygen levels are known to fluctuate. Recommendations for assessment of oxygenation level as well as parameters and techniques for supplemental oxygen administration are described in detail in the ATS Statement on the Care of the Child with Chronic Lung Disease of Infancy and Childhood (141). Although chest physicians and pulmonologists are using appropriate criteria for prescribing LTOT, the order alone does not assure appropriate use in the home. LTOT patients report using oxygen for less than the prescribed time (142), and overestimate their use when self-reports are compared with metered values (143). Kampelmacher and colleagues (144) found that of 528 patients receiving LTOT only 33% had been given any instruction for oxygen use, and more than 40% did not know their oxygen prescription or guidelines for use. Reported reasons for nonadherence included difficulty in managing equipment, absence of dyspnea, restricted autonomy, fear that the therapy would not work when it was "really needed," and feelings of shame. The investigators concluded that more education, motivation, and monitoring of patients was needed, and suggested that support at home was more cost-effective than additional outpatient visits. Depression, anxiety, less independence in IADLs (such as shopping), and poor health-related quality of life were described in LTOT patients (145–147) LTOT patient experiences of impaired mobility, restriction, and social isolation have also been described (148). APNs, chest physicians, pulmonologists, and other clinicians along with home care providers must assist patients in adapting to the many challenges posed by LTOT. Pulse oximetry in the home has the advantage of replicating the patient's usual environment and activities and can be used for flow rate titration during rest and exercise. Many aspects of LTOT use can be initially taught or reinforced in the home. Examples include correct usage guidelines, determining when replacement or refill is needed for compressed or liquid systems, safe filling of liquid portable devices, maintaining a back-up system for concentrators, and avoidance of fire hazards (149). Patients can be helped to incorporate oxygen use into ADLs and IADLs, and can be assisted with activities they cannot manage independently. Psychological support and identification of situations requiring professional intervention can also be provided in the home setting.
Smoking Cessation Research supports recommendations for encouraging and assisting patients to quit, but data are insufficient to make definitive recommendations for parents (151). However, clinical practice guidelines encourage smoking cessation interventions in parents to eliminate second-hand smoke exposure in their children (152), and application of knowledge about the risks posed by such exposure suggests these recommendations are warranted. Although guidelines do not distinguish between potential harms to well children and those with acute or chronic lung disease, smoking cessation for parents of ill children is especially important.
Pulmonary Rehabilitation
The psychosocial needs of patients with chronic respiratory disorders are significant. Managing even basic tasks such as bathing and dressing increases dyspnea and undermines confidence and self-esteem (166, 167). Greater levels of dyspnea are associated with more impaired physical and psychosocial functioning in community-dwelling patients with COPD (168). Chronic fatigue and recurrent exacerbations contribute to impaired muscle endurance with a negative cycle of inactivity and progressive deterioration in functional and psychological status (169). Home oxygen may represent a significant barrier to previous activities (148). The prevalence of depression is high in elderly patients with COPD, and is associated with lower self-rated HRQL (146, 170) and reduced ability to perform ADLs (170). Poor emotional functioning and living alone are associated with earlier mortality in female patients with COPD receiving LTOT (171). Dow and Mest (172) recommend screening for depression in patients with chronic respiratory disease, as well as a full family assessment to identify family coping patterns and the level of support required for the patient. Home care team-led interventions that may be beneficial include counseling (individual and group therapy), treatment with antidepressants when indicated, home-based or outpatient exercise programs, teaching of relaxation techniques, and formal education classes with other chronic respiratory disease patients. Family or other caregivers also experience a significant impact on their quality of life (173, 174) and mental health (175). Chronic pulmonary disease can reduce the patient's wage-earning ability and cause financial distress. Family members become involved in direct care as the patient loses the capacity for self-care and social activities gradually decrease. Family caregivers to patients with COPD report dissatisfaction with recreational or free-time activities for themselves and for patients (176, 177). However, these perceived reductions may be common to aging people, not just patients with COPD (177). Wicks (178) found that the only patient factor significantly affecting family health was cognitive impairment (i.e., poor memory), a common condition of elders with and without physical impairments. Cain and Wicks (179) found that COPD caregiver burden was lower among black individuals and among family caregivers over age 55 years, but did not differ by sex, relationship to the patient, caregiver education, perceived adequacy of financial resources, or employment status. Wives of patients with COPD interviewed by Bergs (176) reported that outside employment reduced their perceived caregiver burden. These wife caregivers also reported dissatisfaction with the amount of social support received from others, although the overall caregiving experience can be rewarding. Families of stable Finnish patients living at home with LTOT had better overall family functioning than families of patients with COPD experiencing repeated hospitalizations, although functioning in both groups was good (180). Families of LTOT patients had more emotional closeness, and were more flexible and independent than families of inpatients. In the pediatric asthma population, depression, anxiety, recent loss, and denial of symptoms are associated with increased morbidity and mortality (181). Parents of asthmatic children experience multiple stressors as they attempt to manage their child's asthma by monitoring symptoms, giving prescribed treatment, providing emotional support, and handling the everyday responsibilities of parenting. The impact of stress can result in family dysfunction manifested by excessive worry, denial, and noncompliance, anxiety about parenting and discipline, and overprotectiveness. Pediatric pulmonologists and specialist nurses can play a definitive role in providing access to appropriate resources. Asthma self-management courses and peer support groups can enhance parents' abilities to manage their child's asthma and associated stressors (182). Families of medically fragile or technology-dependent (MFTD) children experience an ongoing crisis owing to the seriousness of the situation and, often, uncertainty about the child's future (64, 66). Parent caregivers may feel inadequate to the task of caring for their MFTD child, or experience social isolation, fatigue, and emotional exhaustion due to the demands of care (66). Parents and families use multiple strategies to manage the stress of the situation, including use of respite care (below). They draw on informal social support resources such as family and friends (183), and formal sources such as pediatric pulmonologists and home care professionals (64). Emotional expression, physical exercises, distraction, positive self-talk, and humor are also used to manage stress (66). Prayer (66, 183) and meaning-making experiences ("we are special," fate, faith) are used to move to acceptance of the situation (183). Home health agencies frequently provide the first link for patients and families to address these psychosocial adjustments. Chest physicians and pulmonologists can provide access to community or home-based rehabilitation. Where access to rehabilitation programs is not possible, home health nurses assess the impact of chronic illness on the patient and family. The nurse plays a primary role in providing education, making appropriate referrals to other health care professionals, and coordinating care. Home health nurses need to assist families to identify their own strengths and support networks, and to make appropriate referrals for additional resources (184). Community support resources are listed in Table 6.
When the home health nurse identifies psychosocial concerns, referral to a medical social worker is indicated. The social worker can facilitate the identification and use of community resources, including negotiating appropriate financial assistance, providing counseling for long-term care planning, end-of-life decision-making, and short-term family therapy (185). Formal respite care has been promoted as an appropriate preventative health intervention for stressed family caregivers, allowing them time away from caregiving activities (186). Respite services include in-home aides or nursing services, overnight respite programs, short-term group home or nursing home placement, day treatment centers, and camps for MFTD children (187). Physician support can facilitate access to these services. Respite care may be especially important for families caring for a medically fragile or technology-dependent child, particularly those using an apnea monitor or mechanical ventilator. Parent caregivers to MFTD children value the opportunities provided by respite care to attend to other family responsibilities, including time for siblings of the ill child and to engage in spontaneous family activities; to allow for rest and recovery from exhausting, sometimes 24-hour care; to accomplish personal goals; to strengthen relationship with a partner, including having time alone; and just to have time away from the child (62, 63). The pediatric pulmonologist and nurse's awareness of the available services and appropriate referral are key to caregiver support. Although respite care has been identified by caregivers as the most needed service (188), barriers to using respite care have been identified. Barriers include lack of knowledge about respite resources, inability to access care because of lack of qualified caregivers for children with complex care needs, insufficient financial resources to cover respite care, and selected agency requirements that respite care be planned weeks in advance of need (187, 189). Even when respite care is available, it is often unaffordable or is not compensated by insurance programs (190).
As lung function progressively deteriorates, the emphasis of care for patients with chronic lung disease shifts toward palliation of symptoms and preparation for eventual death. Patients with advanced lung disease need to consider options for end-of life care, ideally in collaboration with their primary care physician, chest physician or pulmonologist, nurse, and family members. A priori decisions as to whether care can be maintained at home, under what circumstances to hospitalize, whether to initiate life support, and when to discontinue life support should be made whenever possible (191, 192). The hospice care team is specially trained to assist. Admittedly, determination of the terminal phase of COPD is difficult (193–195). On the basis of reviewing recent research findings, Hansen-Flaschen (192) recommends that the following profile be considered indicative of high risk of death within the next year: best FEV1 less than 30% predicted, declining performance, increasing dependence on others for ADLs, uninterrupted walk distance limited to a few steps, more than one urgent hospitalization within the past year, left-heart and/or other chronic comorbidity, older age, depressed mood, and unmarried status. End-of-life issues are especially important for patients undergoing long-term mechanical ventilation (LTMV). The patient receiving LTMV at home may be faced with determining when it is appropriate to consider the withdrawal of treatment. When 50 patients with amyotrophic lateral sclerosis who were receiving LTMV were interviewed, mos |
TOP
CONTENTS
EXECUTIVE SUMMARY