Chapter Comparing Effectiveness and costs of Home v. Hospital Care

Transcription

1 ,/.- Chapter Comparing Effetiveness and osts of Home v. Hospital Care

2 Chapter 3 Comparing Effetiveness and Costs of Home v. Hospital Care INTRODUCTION The purpose of this hapter is, first, to sub- hapter presents evidene regarding the osts of marize eisting evidene on the effetiveness of home v. hospital inpatient are. More disussion home are for tehnology-dependent hildren and of alternative settings of are an be found in apthe omponents that may affet it. Seond, the pendi D. EFFECTIVENESS Evidene of the Effetiveness of Home Care There is a broad assumption in the home are literature that, ompared to institutional are, home are is both more desirable and more effetive in promoting the mental, emotional, and physial health of hildren. This assumption seems a reasonable one for many, perhaps most, tehnology-dependent hildren. There is little reason to believe that when a family wants its hild at home, and adequate medial servies and support are available, the home is not an effetive setting of are. Unfortunately, onrete evidene on how muh more effetive home are is, or the irumstanes under whih it is as effetive, is laking. There is also virtuall y no evidene in the literature on the relative effets, either medial or psyhologial, of are aross various alternative settings for the tehnology-dependent population, inluding alternatives suh as board and are homes. A few studies have attempted to doument the benefiial effets generally asribed to pediatri home health are, or to speial servies assoiated with this are. The largest and most rigorously designed of these studies was performed as part of an evaluation of the Pediatri Home Care (PHC) unit at the Albert Einstein College of Mediine- Bron Muniipal Hospital in Bron, New York (150). In that evaluation, hronially ill hildren were randomly assigned either to the PHC unit or to standard outpatient lini-based are (with no speial servies). Standard inpatient are was not ompared. PHC servies inluded delivery of health servies, patient and family training, servie oordination, and patient advoay. Servies were delivered by an interdisiplinary team whose ore was the pediatriian, pediatri nurse pratitioner, and family, but whih also inluded physiian speialists, a psyhiatrist, a soial worker, and a physial therapist. Children enrolled in the PHC program had better psyhologial adjustment, families reported signifiantly higher satisfation with are, and mothers showed redued psyhiatri symptoms ompared to the ontrol group (150). There was no differene between the eperimental and ontrol groups in the impat on the hild s funtional status, or in the impat of the hild s illness on the family. The researhers in this study hypothesized that the soial and psyhologial support offered by the program balaned the family s burden of aring for the hild at home, resulting in no hange in net impat on family ativities, struture, or burden. An evaluation of the impat of the home are oordination and support programs for ventilatordependent hildren in three States (Louisiana, lllinois, and Maryland) is urrently being onduted by researhers at the University of Chiago (3). Results from this evaluation are epeted in late

3 36 Numerous parents and liniians have asserted for some time that home are is superior to hospital are for medially stable, tehnologydependent hildren. Children ared for in the home are believed to make faster medial and developmental progress, and have better psyhosoial development, than hildren in the hospital (69,95,141,156). There are no published objetive investigations of this hypothesis. It is a diffiult one to test, sine one annot ompare a hild s progress at home with his or her progress in the hospital during the same time period. The rate of hroni rehospitalization of hildren plaed in family homes an be onsidered a measure of effetiveness of home are. It is to be epeted that tehnology-dependent hildren will have oasional brief hospitalizations for aute episodes of infetions and illnesses and for evaluation, but the ability of a program to redue or eliminate avoidable rehospitalizations and emergeny room visits ould be a useful measure of its effetiveness. Fators Influening the Quality and Effetiveness of Home Care Two sets of fators influene the effetiveness of home are: those internal to the home environment, inluding parental abilities and attitudes; and those eternal to the home, suh as the availability of trained professional nurses and the quality of equipment available. Internal Fators A ruial ondition for effetive home are is that the family wants the hild at home, and that it is willing and able to help are for the hild (1) or to aept and support a professional, full-time aregiver into the household. Parents have epressed strong desires to have their hild at home, and they ommonly take over muh of the hild s nursing needs (60,156). They may beome so profiient in providing the neessary nursing that they train some of the the professionals who assist in their hild s are (156). However, there are families for whom full-time long-term home are may not be the best alternative for either the hild or the family. The families of hronially ill hildren an sometimes enounter severe and ongoing psyhologial and emotional stress (54,173,180). Some families may be simply unable or unwilling, for physial, psyhologial, or finanial reasons, to ope with intensive home are for the hild. Other families might want to have the hild at home, but might need a long adjustment period, or might need to feel onfident that respite or long-term are outside the home is available if the stress beomes too great. In a few ases, a parent might be willing to are for a hild but be unable to do so safely. These fators lead to less effetive home are and the need for alternative settings of are. Eternal Fators The availability of servies in various settings is also ruial to the quality and effetiveness of home are relative to institutional are. Home are may not be more effetive than hospital or other institutional are if the appropriate range of servies are not provided. If a hild an reeive therapy or other vital servies in the hospital but not at home due to lak of insurane overage, home are is likely to be relatively ineffetive. Conversely, if a hild reeives more intense, individualized therapy and eduation at home, home are is likely to be more effetive than hospital are. Professional nursing skills are a partiularly important fator in the effetiveness of are, but skilled nurses are not always available for home are. In an aute-are hospital, nursing servies for a tehnology-dependent hild are most likely to be provided by a registered nurse (RN), and often by an RN with etensive training in pediatris or intensive are. In home settings, on the other hand, professional nursing is muh more variable. Some home are agenies speialize in high-tehnology home are or pediatri home are. Others, however, may not have nurses (whatever their ertifiation level) trained to provide the speialized are needed by tehnology-dependent hildren. Most liensed pratial nurses (LPNs) and many RNs, for eample, are not trained to operate ventilators and provide respiratory are. Third-party payers may plae restritions on the servies that a nurse with a partiular set of redentials an provide, although there is onsid-

4 37 erable ontroversy over the relationship between redentials and quality of are. In New Meio s Mediaid program, for eample, RNs may provide any respiratory- or nutritional-support home are; LPNs an provide most suh are, but not ventilator-related are or parenteral nutrition; and paraprofessional attendants may not provide any suh omple are (34). In Louisiana, on the other hand, families needing assistane at home rely heavily on trained paraprofessionals even for ventilator-related are (97). These different onventions are assoiated with differenes in servie availability, but they also reflet different impliit evaluations of the relationship between redentials and quality. The differenes in the quality of home are provided by family members, paraprofessionals, LPNs, RNs, and speialty nurses has not been addressed epliitly in the literature. Undoubtedly, the level of skill-speifi training is an important variable, regardless of the general ertifiation of the provider. Certain quality issues arise at home that rarely arise in the hospital beause of established routines or protools in the latter, but not the former, setting. For eample, home hemotherapy introdues substantial onerns regarding the use and disposal of very toi hemials (87), Widespread use of and dependene on home ventilators intro- Cost onsiderations have played a substantial role in the evolution of home are for tehnologydependent hildren. When the Federal Government first waived ertain Mediaid rules to permit hospital-bound, tehnology-dependent hildren to reeive Mediaid payment for equivalent home servies, it did so on two grounds: that the home was equal or preferable to the hospital as a setting for a hild s are and development, and that home are would be a fration of the ost of hospital are to Mediaid. These riteria, and partiularly the seond, have endured. From 1981, when the first eeption was granted, to 1986, Mediaid (and other third-part y payers) has ontinued to require a showing of program ost savdues onerns regarding the quality of maintenane of equipment and issues of how the widely dispersed users are informed about potential mehanial defets (118). Conerns about monitoring the quality of home health are have been raised before (160). These onerns are partiularly relevant in the ontet of widespread emphasis on early hospital disharge. In a number of States, Mediaid pays hospitals a preset rate per disharge regardless of the atual length of hospital stay of a hild (101). One home are for tehnology-dependent hildren is widely aepted in an area, and funding beomes available, hospitals may be very relutant to keep these hildren, whose length of stay is generally quite long. If the third-party payer s interests also lie in enouraging home are, parents ould be fored to take a hild home, possibly with insuffiient servies, before they are adequately prepared. Or, parents ould be fored into home are when they are unable and unwilling to provide the servie at all. Anedotal reports suggest that, in some ases where home are is a funded option, hospitals or payers are indeed putting pressure on families to take these hildren when the families are not ready to do so (104,120). These irumstanes ould have serious negative impliations for the quality of home are. COST ings before paying for home are for many tehnology-dependent hildren. Of ourse, program ost savings and soial ost savings are not neessarily the same. This setion first desribes the omponents of home are osts i.e., the fators that influene the osts of home are for different tehnologydependent hildren. It then presents the issues and problems involved in omparing the osts of are aross alternative settings. Finally, it presents eisting evidene from the literature and from home are programs regarding omparative average total osts of tehnology-dependent hildren aross settings.

5 38 Components of Home Care Costs Startup Costs Startup osts are one-time osts that are usually inurred before the hild is plaed in the home. They inlude the osts of home improvements, major equipment, and aregiver training. Home improvements are often a neessary prerequisite to home are, partiularly for ventilatordependent hildren. Home modifiation needs an inlude: wiring and other eletrial work; onstrution (storage and preparation spae, wheelhair ramps, equipment aommodation); speial needs (e.g., a generator for emergeny power in rural areas) (178); and general upgrading that requires the family to move (e.g., moving from an unsanitary apartment or one inaessible to a wheelhair to other housing where appropriate modifiations an be made). The osts of neessary home modifiations an vary substantially; in the first 3 years of Louisiana s home are program for ventilator-dependent hildren, home modifiation harges ranged from $0 to $13,500 (97). Equipment an be a major omponent of startup osts, partiularly for hildren on ventilators or oygen. (If the hild is not epeted to be tehnology-dependent at home for long, or if an insurer will only pay for rented equipment, muh of the hild s equipment will be rented rather than purhased. ) Speial equipment for a ventilatordependent hild might inlude two ventilators (a primary and a bakup ventilator), an emergeny battery, an oygen tank, a sution mahine, a nebulizer (to deliver aerosol mediation), a manual resusitator, and an infusion pump (to ontrol the administration of nutrients). The hild may also need other supportive equipment suh as a wheelhair, a ommode, a speial bed, and various other adaptive furniture and devies. A hild dependent on intravenous feeding, by om- Etra spae may be needed, for instane, for preparing nutrient solutions or for leaning and sterilizing equipment parison, might have startup equipment osts that are a negligible proportion of total home osts. Training in the neessary medial proedures, whih may take days or weeks, is a vital first step for families. Even if they will have professional nursing help, they must learn to perform the neessary proedures as a guard against emergenies (e.g., resusitation) or in situations where the regular nurse might be inapaitated or absent. Table 11 shows a list of skills the family of a hild on respiratory support or infusion therapy (intravenous drugs or parenteral or enteral nutrition) might need to learn. Training time and osts differ by training institution, by level of are the hild requires, and by the family members ability to assimilate information and perform the neessary tasks. Institutions training families in respiratory are may do this in several days of intensive training (13). Or, they may gradually enourage family members to provide are while the hild is in the hospital, perhaps requiring that the family provide total are for 48 hours before disharge (57,65). Training in intravenous tehniques an also be time-onsuming; one program reported a 3-week training period for home patients (181). Ongoing Supplies and Servies Supplies are often purhased monthly through the hospital or home are ageny. Table 12 details the supplies needed for intravenous therapy and tube feeding. The highest ongoing supply osts are probably inurred by hildren requiring total parenteral nutrition, beause their nutrient formulas onsisting of pre-digested fat, arbohydrate, and protein solutions are individualized, require speial handling and storing, and have epensive omponents. In a 1982 survey, average harges for nutrition supplies and solutions were reported as $3,059 per month for hospital-supplied solutions and $4,615 per month for nonhospital-supplied (possibly pre-mied) solutions (122). The range of harges, however, was very wide; the highest harges were nearly double the average in both ategories. Ventilator-dependent hildren also have high ongoing supply osts. As is shown by the hild

6 39 Table 11. Cheklist of Respiratory and Infusion Skills for Home Care Patients and Families Respiratory skills: 6. Eduational and diversional ativities: 1. The disease proess: enouraging hiid self-are lung disease and Its treatment sedentary ativities short- and long-term prognosis and goals 2. Pulmonary hygiene measures: 7. Aess to servies: nurses avoidane of infetion (hand-washing and sterile physiians tehnique). respiratory equipment suppliers adequate systemi hydration therapists hest physiotherapy proedure emergeny power steriie sutioning proedures other servies traheostomy are proedure Infusion skills b traheostomy tube uff are proedure 1. Understanding of omponents of home lnfusion signs of airway infetion and or pulmonae that therapy: should be reported to the dotor 2. Sterile proedures: 3. Use and maintenane of the equipment: aring for mediations and solutions daiiy maintenane of the ventiiator preparing mediations and solutions for infusion oygen use, abuse, and hazards 3. Infusion tehniques: leaning and hanging of ventiiator iruits measuring omponents, using syringes, bottles, resusitation bag use and leaning and bags sution mahine use and leaning setting up the infusion 4. Nutrition ounseling: a starting the i n fusion maintenane of ideal body weight disontinuing the infusion speial dietary restritions as needed operating the infusion pump 5. Physial therapy: 4, Reognizing ompliations: ambuiation, where possible of the atheter general strengthening eerises of the infusion relaation eerises of the mediations athls table IS based on one for adults Most In f ants on ventilators requl re enteral lube feeding for at least the beg[nnlng weeks or months Thus the aml I Ies of these hildren must also be tral ned In I nfus!on skills relatlng to tube feeding and are bnot all SKI115 are appliable to all k!nds of lnfuslon therapy SOURCES List of respiratory skills adapted from J Feldman and P G Tuteur Mehanial Ventilation From Hospital Intensive Care to Home Heart & Lung 11 (2) Marh April 1982 Infusion skiils adapted from Blue Cross and Blue Shteid Assoiation In fusion Therapies in Home Health Care (Chiago, I L BC/BSA, January 1986) Table 12. Supplies Needed for Four Home Infusion Therapies Therapies for whih supplies are needed Parenteral Enteral Intravenous Supplies nutrition nut ri t ion antibiotis Intravenous atheter Intravenous tubing.... Mediations Nutrient solutions (e.g., lipids) Intravenous solutions (detrose or saline).,.... Infusion pumps Heparin lok and dilute solution Needles and syringes Dressings (gauze and tape or transparent Nasogastri, gastrostomy, jejunostomy tubes Enteral bag and tubing., Enteral feeding preparations SOURCE Blue Cross and Blue Shield Assoiation Infusion Therapies in Home Health Care (Chiago IL: BC/BSA, January 1986) Cheroot herapy

7 40 whose reimbursable epenses are detailed in table 13, monthly osts for major supplies may total over $1,600 (116). Mediations, speial nutrient solutions, and equipment maintenane an add substantially to this ost. 2 Nursing needs are highly varied and, for many hildren, are the most epensive omponent of home osts. Outlays for nursing are are inversely related to the amount of unpaid are that the family is willing and able to provide. As has been noted (148), most of the redution in harges reported for ventilator-dependent patients at home results from shifting the burden of nursing osts from the payer to the family. Similarly, a signifiant part of the redution in home harges observed by numerous intravenous therapy programs (96,130,132,151) is due to the fat that the patients in these programs reeive little or no professional nursing at home. Inadequate or poorly oordinated equipment maintenane an present a major problem to a home are program and a signifiant epense to families or third-party payers (104). Programs are still aumulating eperiene in working with manufaturers and suppliers to minimize problems. Table 13. Sample Home Respiratory Care Costs That Were Reimbursed by a Third-Party Payer, 1985 one-time Durhase of eauipment Unit ost Sution equipment $ Manual resusitator Emergeny 12V battery Heating nebulizer Total one-time ost $ 1, Monthly servies and supplies Monthly ost Home assistane: Nursing $ 7, Rentals: Bakup ventilator Ventilator ,00 Sution devie Apnea monitor Oygen system Supplies: Ventilator tubing Oygen masks Liquid oygen Nebulizer Sterile water Traheotomy tubes Sution atheter w/ gloves Cardia leads Total monthly ost $9, SOURCE M Mikol, SKIP of New York, In, New York, NY, personal ommunia. tion, June 1986 Atual nursing are ependitures for a tehnology-dependent hild depend on three fators: the ompleity of are required, the amount of paid nursing are required (e. g., 3 hours per day v. 24 hours per day), and the ertifiation level of the nurse. In general, 24-hour ventilator-dependent hildren with traheotomies need the most onstant and omple nursing are. Other hildren, suh as those reeiving intravenous nutrition or therapies, may need omple or intensive are for several speified hours per day; or they may need less omple are but need it onstantly in order to avoid a life-threatening event (e.g., hildren requiring trahea sutioning). Professional home nursing osts an be substantial and vary onsiderably with the ertifiation level of the nurse. In New Meio, for eample, Mediaid pays $17 per hour for RNs and $13 per hour for LPNs, slightly more than the harges of the lowest pried home nursing ageny in that State (34). If all are were provided by professional nurses, the monthly Mediaid payments for a hild requiring an 8-hour professional nurse would range from $3,120 to $4,080; payments for a 24-hour nurse would range from $9,360 to $12,240. If Mediaid paid ageny harges, as some insurers do, payments ould be as high as $18,000 per month for a 24-hour RN. Other fators an also affet nursing osts. For eample, the need for an esort to aompany a nurse to work in a high-rime area would raise osts. Or, nurses might demand higher pay when working in suh areas. Speialized therapy is needed by most tehnology-dependent hildren in order to progress. Speeh therapy, physial therapy, and oupational therapy are ommonly provided to these hildren in one or more weekly visits. Basi respiratory therapy, however, often beomes a required skill of the primary aregiver, both beause it is often required so frequently and beause many third-party payers do not pay for home respiratory therapy visits. Outpatient servies to tehnology-dependent hildren in home are an inlude regular visits to one or more speialty physiians (e.g., a pediatri pulmonologist), frequent laboratory workups, and visits to a loal pediatriian or family

8 41 physiian who oversees the hild s well hild are. A loal. physiian who is familiar with the hild s health status and medial needs is partiularly important for families who live a great distane from the speialty lini or tertiary are hospital. Even with these outpatient visits, hildren in home are may have frequent hospitalizations for in-depth assessment, initiating new treatments, respite are, or ompliations or sudden emergenies relating to their onditions. These rehospitalization are often overlooked when omparing home and institutional are osts. Although outpatient visits and laboratory tests are often relatively minor ompared with other home are osts, they are ongoing and by no means negligible. For eample, the individuals inluded in a 1982 survey of home parenteral nutrition programs averaged $23 to $32 per month in physiian and lini osts (for patients served by hospital- and nonhospital-programs, respetively), with etremes ranging from $6 to $83 (122). Laboratory work for stable patients in this survey averaged $69 and $82 per month for hospitaland nonhospital-supplied patients, respetively, and ranged from $4 to $350 per month (122). Transportation to outpatient servies and to shool is required by tehnology-dependent hildren in home are and an be a substantial ost for some hildren. Children reeiving intravenous antibioti therapy or hemotherapy may require physiian visits as often as twie a week (130). For stable ventilator-dependent hildren, visits may be less frequent weekl y or monthly but transporation osts may be very high beause the transportation vehile must be spaious enough to aommodate respiratory equipment and a wheelhair. Children served by the Louisiana home program for ventilator-dependent hildren travel up to 385 miles round-trip for physiian and lini visits (97). Of 23 hildren whose transportation needs were detailed by this program as of June 1985, 7 used the family ar; 3 used speial vans purhased for that purpose; 3 used publi transportation; 1 hild used an institutional van; and 8 hildren used ambulanes. 3 Three of the hildren using ambulanes did so for emergeny or lnterhospital transfer purposes only, while they resided in institutions or nursing homes. One other hild required an ambulane twie for traheotomy tube hanges. Of the remaining 4 hildren using ambulanes for transportation, 3 eventually died. No other forms of transportation are reorded for any of these 8 hildren, Respite are is are that gives the family some relief from ongoing nursing are. It may be in the form of an oasional professional nurse or other person who provides are in the home. Or, it may be in the form of a nearby hospital or other faility that ares for the hild while the family is on vaation or pursuing other ativities. Respite are raises the immediate osts of home are, but it may lower total osts if the assurane of oasional respite enables the family to provide most ongoing are. Case management-oordination and oversight of the pakage of servies provided to an individual is a vital servie to most tehnologydependent hildren beause of the multipliity of startup and ongoing servies needed, Case management may be performed by a health are professional, suh as the hild s pediatriian (112) or a speially trained pediatri nurse (129). Or, thirdparty payers may provide ase managers (as part of an individual benefits management program) to ensure, first, that the appropriate mi of servies are available to enable the hild to reeive appropriate are at home; seond, that those servies ontinue to be provided as arranged; and third, that the hild s progress is monitored, so that appropriate hanges in servie are made. Case management an sometimes minimize the osts of are for hildren already being ared for at home. The Florida Rural Efforts to Assist Children at Home (REACH) program, a Mediaid demonstration projet, sueeded in reduing rehospitalizations and emergeny room visits of hronially ill hildren in that program as ompared to equivalent hildren not served by the program (129). The program, targeted at high-ost hildren (not neessarily tehnology-dependent hildren) eligible for both Mediaid and Servies to Children with Speial Health Care Needs, used ommunity-based pediatri nurses as ase managers, oordinators, and onsultants to help families make the most appropriate use of medial servies (129). The most important aspet of ase management is that it an serve both the interests of the family and of the third-party payer. At present, it is losely linked with the epetation of ost savings, and the proess of ensuring those savings. If a private insurer epets to eventually pay out the maimum lifetime benefit, however, the inentive

9 42 to provide ase management may be weakened. There is also a danger that ase management will be superfiial. Managers whose ativities are limited by the payer s interests, or by a large aseload, may be hampered by not being intimately aquainted with the hild s needs, or by ignorane of important resoures that ould be made available. Issues in Comparing the Costs of Hospital and Home Care 1. Cost to whom? The relative osts of hospital and home are depend on whether one is onsidering osts to Mediaid, osts to private insurers, osts to the family, or total resoure osts. Home are might often involve fewer total resoure osts than hospital are, but it might not ost the third-party payer less. For eample, in some States, Mediaid pays hospitals a set rate per patient or per admission, regardless of the atual length of stay for that patient or the servies provided. In these States, paying for adequate home are for tehnology-dependent hildren ould ost the State and the Federal Government more than finaning those hildren s are in a hospital at the fied rate. (Of ourse, the unompensated osts to the hospital aring for hildren in this situation are very high. ) Home osts may be lower to third-party payers than institutional osts beause of ertain unompensated osts inurred by the family when the hild lives at home. The two most notable eamples of suh unompensated osts are the osts of basi room and board, and the unpaid time of parents or other volunteer aregivers. For some hildren, paid home servies may be replaing not institutional are but are previously provided by the family at great epense. These servies redue the osts to the family while inreasing the net ost to the third-party payer. 2. Comparing equivalent osts. Different soures of information on osts of tehnologydependent hildren use different onepts of ost. For eample, one may report hospital harges, while another reports third-party payments to the hospital. Hospital harges themselves may not be equal to the atual osts assoiated with providing a servie. For eample, one analysis of intensive are unit (ICU) servies found that the harges in one hospital for room and board in the ICU were only slightly more than one-half of alulated atual osts to the hospital (77a). Even omparing average hospital harges (say, per month) with average home are harges for a tehnologydependent hild an be misleading if the two inlude different servies. For eample, hospital harges often inlude aute-are servies suh as surgery, while home harges do not. Inonsisteny in omparing the appropriate equivalent osts (i.e., maintenane and reuperative treatment osts) in eah setting is a major problem in the literature. 3. Biased soures of data. Most third-party payers offering intensive home are servies require that it be heaper for them to pay for are in this setting. Consequently, most data on tehnology-dependent hildren served at home will, by definition, show that home are is heaper, There may be some hildren who are not disharged home beause it will not be heaper to the payer, but sine these hildren are not served at home their presumably higher home osts are not reorded. 4. Different osts for different hildren. -In the hospital, osts depend largely on medial need and on the physiian s judgment and style of medial pratie. At home, however, the osts of are vary not only with the type and severity of disability, but also with the family and home environment. Fators suh as the ability of family members to provide most nursing are, and the etent of home are renovations needed, have great impat on osts of home are. 5. Cost in whih setting? Given suffiient equipment and servies, many tehnology-dependent hildren ould, if neessary, reeive are in any of a number of settings that are intermediate between the aute-are hospital and home (see app. D). In some urban areas, several of these intermediate options may atually be available; in other areas, none may be. Thus, while for one hild it may be appropriate to onsider the relative osts and effetiveness of are in a long-term rehabilitation hospital as well as home and auteare hospital osts, for another hild the rehabilitation hospital may be unavailable, even if it theoretially offers the lowest ost are.

10 43 The primary reason for variations in average ost aross institutional settings is that different settings offer a different mi of servies and different levels of servie intensity. For eample, one setting may ost more beause it offers full-time respiratory therapists on staff. However, ost is not a diret measure of effetiveness or servies. Costs and effetiveness are related (e.g., adding home servies to enhane effetiveness may inrease osts), but, given no other information, one annot dedue the relative effetiveness of different settings from their relative osts. Evidene There are two types of evidene on the osts of home are for tehnology-dependent hildren ompared to are in other settings. First, there is evidene on the osts of are for hildren requiring ventilators and other devie-based respiratory supports. Sine the evidene is sparse, some information of the osts of are for ventilatordependent adults is also inluded here. Seond, there is literature regarding the ost of home are for people reeiving home intravenous nutrition or drug therap y. In this ase, there is little evidene speifiall y for hildren, and the programs generally do not send home individuals whose families annot provide the neessary nursing servies. Published omparisons of home are osts with the osts of nonhospital institutional are (e. g., nursing homes) are noneistent for tehnology-dependent hildren in either group. There is some evidene regarding osts of are for hildren with less intensive needs, suh as those on dialysis or apnea monitors. It is not disussed here beause the relative osts of are for these hildren is less of an issue than the osts of are for hildren requiring respiratory and nutritional supports. Evidene on Relative Costs of Care for Ventilator-Dependent Children The evidene on the relative osts of aring for ventilatordependent hildren in alternative settings is inomplete. Cost estimates are typially based on harges or payments and are available for small numbers of hildren enrolled in a partiular program or disharged from a partiular institution. All omparisons of home and hospital osts for these hildren show that their are is almost inevitably less epensive at home. These omparisons demonstrate that there are a onsiderable number of hildren for whom home are appears to be less epensive, often dramatially so. However, up to now no payer has reimbursed for an eeptional 1evel of home are unless it is less epensive than hospitalization, so the ventilator-dependent hildren now on home are are by definition less epensive to are for in this setting. Table 14 summarizes omparative hospital and home harges for ventilator-dependent people from the literature. Beause of the few reports available, adults as well as hildren have been inluded, The figures in this table suffer from many of the problems disussed above. The servies inluded in hospital osts are generally muh more etensive than those inluded in home osts, and the fat that the figures are averages disguises high variations in the amount of paid nursing the patients required. Despite these methodologial problems, however, table 14 still provides ompelling evidene that for some tehnology-dependent hildren the home are harges are substantially less that those for intensive or intermediate hospital are, The primary reason for this differene is simple: when a hild is ared for at home, the osts of housing and muh of the nursing are borne by the family rather than by the hospital or health are payer. If a hild required 24-hour paid nursing at $20 per hour (slightly higher than Mediaid pays in New Meio), monthly home nursing osts alone would total $14,400 nearly as muh as monthly hospital osts in several of the studies in table 14. Thus, the etent to whih total home are harges are less than total hospital harges depends largely on the etent to whih the family is able and willing to provide nursing are and appropriate failities for the tehnologydependent hild. The differene in harges also depends on whether less epensive nursing an be substituted for more epensive are, and on the medial effetiveness of home are. Home are beomes relatively heaper if it speeds the time until a hild ahieves minimal dependene (or delays total dependene), and if it minimizes the

11 Table 14. Summary of Comparative Average Monthly Charges Presented in the Literature of Ventilator-Dependent Individuals in Hospital and Home Settings.,, , J Soure Banaszak, et al., Burr, et al., Cabin, 1985.,.. Care for Life, 1985 Dorm, Feldman, et al., Goldberg, Goldberg, et al., Kahn, Lee, Perry and Lierman, Sherman, et al., Sivak, et al., Splaingard, et al., Average hospital harge $15,469 19,613 29,113 25,063 19,071 17,500 27,435 24,590 22,000 40,590 51,517 40,332 15,600 15,000 Average Home COSts Inluoe home Number of Adults (A)/ some professional harge patients hildren (C) shift nursing Comments $3, , , , , , , , , , , SOURCES See referenes 13, 26, 28, 32, 42, 55, 68, 69, 92, 103, 128, 146, 147, and 149 A A,C A A No Not given Not given Not given No Yes (1 patient) Yes Yes NO (if inluded, home harges are $8,000) Not given Yes (1 patient) Not given Yes (4 patients) Yes (patient represented by high home harge figure) All hospital harges (not just maintenane harges) are inluded In hospital figure. Hospital harges inlude harges before patient was medially stable. Home harges inlude first month home. Based on survey of State respiratory therapist representatives estimation of average harges. Reeived nasal oygen only (not ventilation).. Hospital harges from intermediate are unit. Charges are averages during one year, not neessarily before initial disharge home. Two patients were not hospitalized that year. Hospital harges inlude surgery, aute are. Home harges Inlude estimated ost of some servies provided at no harge. Charges presented here are averages of ranges given in Iiterature report, Hospital harges are estimated and inlude physiian harges. Home harges do not inlude physiian harges or initial osts. If startup harges are inluded, home harges rise to $1,894. Hospital is a rehabilitation hospital. Home are ost does not Inlude drugs.

12 45 frequeny of rehospitalization for infetions or other problems. An analysis of more detailed harge and payment data from hildren who have been served by high-servie home are programs is illuminating. Maryland has omputed the monthly hospital and home payments for 25 hildren served by the State s home are program for hildren requiring respiratory support (93). For these hildren, the mean third-party payment for the last month of hospitalization (a proy for typial hospital osts of a hild when medially stable) was $24,715 (range: $210 to $41,057). These hildren were hospitalized an average of 421 days before disharge. The average monthly home are payments for these hildren, eluding the first month home, was $9,267 (range: $300 to $25,000). First-month payments averaged $9,798, or an average of $531 per hild for one-time epenses (93). In Louisiana, average third-party payments for the last month of hospitalization were omparable to those in Maryland ($25,995 for 19 hildren), but average monthly home are osts to the Louisiana program were onsiderably lower (97). Home payments (omputed for 21 hildren) averaged only $3,012 per month, eluding startup osts. Children in this study were all at least partly ventilator dependent. Louisiana Mediaid, the soure of support for many of these hildren, does not pay for home shift nursing, whih may eplain why the home are payments are so low. Data from Illinois demonstrate the potential differenes between private payers and Mediaid in ost-savings of home are to third-party payers. For hildren whose are was ompensated only by Mediaid, payments for the last month of hospitalization averaged $16,984, while monthly home are payments averaged $6,358 (104). For hildren who had at least some private overage, the payment for the last month of hospitalization averaged $26,616, while equivalent home are payments were $6,922. Thus, while the monthly home are payments for hildren in these two groups are roughly equivalent, the ost savings of home are eperiened by private payers (or that would have been eperiened had they overed home are) was substantially greater than that eperiened by Mediaid alone. (Illinois Mediaid program pays for a maimum of 45 hospital days per year, whih limits program hospital ependitures. ) Evidene on Relative Costs of Home v. Hospital Administration of Intravenous Therapies Intravenous therapies prolonged parenteral nutrition and drugs have followed the pattern of renal dialysis and hemophilia treatment, in whih treatments one reeived elusively in the hospital have been adapted to the home. (Intravenous drug therapy may also be administered in outpatient settings. ) Drug therapy usually takes a few weeks, ompared with the months or years ommon with parenteral nutrition, but in other ways the two therapies have many similarities, There is little information in the literature regarding relative osts of are in different settings for individuals reeiving hemotherapy, but all programs reporting their eperienes with home antibioti therapy have reported substantially lower harges for home treatment ompared to hospital inpatient treatment (table 15). In all ases in these programs, patients or their families administered the infusion at home. Patient seletion was a vital omponent of these programs, beause inadequately administered infusions an result in ineffetive treatment and rehospitalization. In one study, 40 perent of the patients reeiving prolonged antibioti therapy were rejeted by the home are program for reasons inluding inability to administer the antibioti, poor family support, and poor motivation. Thus, patients who would have required substantial professional nursing to reeive home treatment (had it been available) and thus might have had more epensive home are ould not partiipate in the program. The major differenes in harges for home and hospital treatment in the programs reported in the literature are the need for patient training, planning, and lini or nurse visits for home patients; and the hospital room harge for hospitalized patients. Most individuals on parenteral nutrition, too, go home only after they or their families have mastered the tehniques and an provide all home are. One ase has been reported in whih a 58-

13 46 Table 15. Comparative Charges for Home v. Hospital Administration of Intravenous Antibiotis as Reported in the Literature Study Home harges Antoniskis, et al., $69 per day Eron, $10 per day in harges inurred only by home patients (training lini visits) Harris, et al,, $207 per day Rehm and Weinstein, $1,652 per illness Stiver, et al., $40 per day Hospital harges $243 per day $170 per day in harges inurred only by hospital patients (room harge in ommunity hospital) $428 per day $7,380 per illness $137 per day NOTE All home lnfusions in these studies were administered by patients or their families SOURCES See referenes 6, 50, 78, 132 and 151 Comments Separate home and hospital groups studied. Other harges (for servies provided to both home and hospital patients) are assumed equal. Charges are for patients treated initially in the hospital, then at home. Hospital harges may inlude surgery. Hospital harges are estimates (patients all got home are). Charges are averages over 4 years of the program. Hospital harges are estimates (patients all got home are). year-old patient was disharged home on parenteral nutrition under the supervision of full-time home nurses (105), When this patient first went home, requiring 12 hours per day of parenteral nutrition administered by a nurse, her home are harges were omparable to harges for hospital are. Her need for parenteral nutrition and the assoiated nursing are diminished over time, however, lowering the home are harges (105). The previously-mentioned 1982 survey of home nutrition programs found home are harges for parenteral nutrition that were roughly $3,400 per month for hospital-supplied patients and $4,900 per month for nonhospital-supplied patients (122). Individual programs have reported program osts of serving patients of approimately $1,800 per month (in ) and approimately $2,700 per month (in ) for the first year, when osts are highest (48,181). Even after adjusting for in- flation, these osts are probably substantially less than the osts of a patient reeiving parenteral nutrition in an aute-are hospital. A third study has reported per-patient monthly home are harges of $1,445, ompared with hospital harges that would have been approimately $6,170 (23). Thus, for both intravenous drugs and nutrition, the literature suggests that home treatment provided under an organized program is substantially less epensive to the payer than are in an auteare hospital, provided that patients are arefully seleted and an perform all neessary proedures themselves or with the help of family members. The literature also suggests, however, that home are harges for adult patients who require substantial professional nursing may approah hospital are harges. None of this literature speifially addresses the relative osts of offering these therapies to hildren in different settings. CONCLUSIONS There is no onrete evidene regarding the relative effetiveness of home and hospital are, Home are is generally onsidered more effetive in promoting the psyhologial and emotional health of hildren; hospital are is generally onsidered more effetive at providing medial and nursing are when neessary to promote physial health. With the adaptation of sophistiated tehnologies and are systems to the home, however, there is no reason to believe that home settings annot be equally effetive at promoting physial health. The desire of the family to have

14 47 the hild home, however, and the availability and quality of these sophistiated tehnologies and are systems, are ritial determinants of effetiveness. Cost savings to third-party payers have beome an important fator in their willingness to finane intensive home are. Suh ost savings are likely to eist for most hildren whose families are willing to bear some of the osts of home are, partiularly nursing osts, by providing those servies at no ost to the payer. However, beause the tehnology-dependent hild population is so diverse, and the nonmedial harateristis of the hildren and their families are so important a fator in nonhospital health are osts, there are no medial or linial riteria that an be used to lassify hildren aording to their epeted ost saving. Payers an ensure a high probability of overall ost savings only on a ase-by-ase basis, where eah hild is evaluated and the likely total osts of are for that hild in alternative settings estimated. Still, some general fators that tend to inrease or derease relative osts (and, sometimes, relative effetiveness) an be identified. 1. Nursing Costs: Home are beomes more favorable to third-party payers as family nursing an be substituted for professional nursing, as less epensive professional or paraprofessional help an be safely substituted for more epensive help, and as intensive nursing needs deline. Paid 24-hour nursing may make home are as epensive as hospital are. 2. Epeted Duration of Dependene: The high startup osts assoiated with home are an be more easily justified if a hild is epeted to be tehnology-dependent for a very long time and ongoing home are osts are relatively low. 3. Family and Other Environmental Fators: Some hildren annot or should not return to a family home. If foster are annot be found, there are often few options other than aute-level hospital are for suh hildren, although other appropriate options (e. g., rehabilitation hospitals, pediatri skilled nursing failities, or group homes) may be less epensive when available. 4. Availability of Servies: Inadequate availability of respite are or aregivers trained in the appropriate skills an make hospital are the only viable option even where home are might be less epensive if those servies eisted. Or, hoies in home servies may be so onstrained that families and thirdparty payers may be fored to pay high pries for the servies. 5. Substitution of Care: Home are will be likely to redue third-party payments only if it an substitute for institutional are, rather than augmenting the are of hildren already being ared for at home by their families. In many ases, however, augmented are partiularly respite are and ase management may be effetive in inreasing the quality of are and of life for these hildren, and may redue rehospitalizations.