- Email: [email protected]
Home health care for children assisted by mechanical ventilation: The physician's perspective
Home health care for children assisted by mechanical ventilation: The physician's perspective A l l e n I. G o l d b e r g , MD, MM, a n d C o l l e n A. M o n a h a n , DC, RRT From the Department of Anesthesia and Pediatrics, Northwestern University Medical School, and Research and Development, Division of Services for Crippled Children, University of Illinois at Chicago
To obtain the physician's perspective concerning their care of children at home who required prolonged life-supportive medical technology, we conducted a mailed survey of 126 physicians caring for 25 children assisted by ventilators who had been discharged from 11 lllinois hospitals to their homes. The 51 (41%) physicians who responded included those practicing in many specialties from a variety of hospital settings throughout lllinois. The majority of respondents had less than 4 years' experience with ventilator-assisted children and were in their earlier years of practice. Most physicians surveyed had participated in discharge planning and maintained an active role with their patients a t home after discharge. The majority believed that changes in ventilatory settings could be accomplished in the home and found hospitalization unnecessary for adjustments of the home care prescription. The physicians thought that the roles and responsibilities should be defined for both the tertiary and community-based physician before hospital discharge, and that d e v e l o p m e n t and support of resources at the community level were essential for the success of home care. (J PEDIATR1989;114:378-83)
Home care is one option for children who require longterm care that involves life-supportive medical technology.lL7 Physicians are essential primary health care provide r s for such patients, but little is known about which medical specialty, level of experience, and type of hospital affiliation are most appropriate for providing primary care to children requiring life support in the home. In 1983 the U.S. Department of Health and Human Services, Public Health Service, Division of Maternal and Child Health, awarded a grant to the University of Illinois at Chicago Division of Services for Crippled Children for development of a model of home care and discharge planning for children requiring prolonged mechanical ventilation at home. This project, the Children's Home Health Network of Illinois, surveyed families with children
Submitted for publication May 6, 1988; accepted Oct. 3, 1988. Reprint requests: Allen I. Goldberg, MD, MM, Medical Director, Respiratory Care, The Children's MemorialHospital, 2300 Children's Plaza, Chicago, IL 60614. 378
assisted by ventilators in the home and their care givers to develop a model appropriate for all children with special long-term needs. The C H H N I physician survey was conducted to provide insights into the concerns and needs of physicians who were involved with the day-to-day care of ventilatorCHHNI DME DSCC
Children's Home Health Network of Illinois Durable medical equipment Division of Services for Crippled Children
assisted children in hospitals or at home in Illinois. Eleven hospitals were involved in the discharge of the 25 children identified by C H H N I . METHODS Twenty-five ventilator-assisted children were discharged to their homes between 1979 and 1986 in Illinois through collaboration with DSCC. 8 Description of the chi!dren at the time of the study is presented in Table I. T h e major roles of DSCC were to facilitate the funding process before
l/olume 114 Number 3
Home health care f o r children assisted by mechanical ventilation
379
Table I. Biographic data of 25 ventilator-assisted children
Child
Age at discharge (yr)
Length of time home (yr)
Race
1 2 3
6.0 2.5 4.5
2 2.5 1.5
B W W
4 5 6 7 8 9 10 11
1.0 2 3 13.5 1 1.5 2 8
4 6 5 0.5 3 3.5 1 3
W W W W W W W W
12 13 14 15 16 17 18 19 20 21 22 23 24 25
0.8 3 4 4 0.7 3 5 0.5 16 14 19 2 1 15
1 7.5 1 4 1.3 1.3 6 1 1.3 0.5 2 1 1 4
W W W W W W W W H W W W W W
Ventilator model
Diagnosis Congenital myopathy Congenital myotonic dystrophy Intraventricular hemorrhage leading to quadriplegia Tri0sephosphate isomerase deficiency Quadriplegia, birth trauma Quadriplegia, auto accident Muscular dystrophy Subacute necrotizing encephalopathy Bilateral diaphragmatic paralysis Nemaline myopathy Quadriplegia, auto accident BPD Central hypoventilation, birth asphyxia Quadriplegia, congenital epidural cyst Central hypoventilation syndrome Central hypoventilation syndrome Cerebral palsy, BPD Multiple congenital anomalies BPD Congenital degenerative neuropathy Muscular dystrophy Quadriplegia; auto accident BPD BPD Pulmonary fibrosis, Klippel-Feil syndrome
Thompson 3000* LP-4, LP-gt LP-4 LP-3, LP-3
Pvv~ Emerson,wThompson 3000 Emerson, Thompson M25 LP-4 Thompson MA-I LP-4, LP-4 Thompson M25, Thompson, M25 LP-4, LP-4 MA-1, LP-4 LP-3, Emerson MA- 1, Emerson LP-3, LP-3 LP-4, LP-4 Emerson MA-1, MA-1 LP-3, LP-3 Rocking bedw LP-4 Thompson Thompson MA-1, Thompson LP-4 PVV, Bennett AP-5*
BPD, Bronchopulmonarydysplasia;H, Hispanic. *Puritan-BennettCorp, Portable VentilatorDivision,Boulder,Colo. tAccutron, Inc., Minneapolis,Minn. :~Lifecare, Boulder,Colo. w H. EmersonCo., Cambridge,Mass.
and after hospital discharge and to provide case management services once the child was home. For this study, DSCC provided assistance in identifying physicians to provide care for these children after the initial hospital discharge. One hundred twenty-six physicians were noted to have written orders for care or provided consultation in the DSCC case records before or after hospital discharge, an average of 4.4 physicians per child. All those physicians were mailed questionnaires that included both structured. and open-ended questions. Physicians were contacted by mail at 2-week intervals for up to 8 weeks to increase the response rate. They were also given the opportunity to decline to participate by mailing back a postcard included with the questionnaire. Description of sample Physician experience. Of the total sample, 51 physicians (40%) completed the questionnaire, 29 (23%) declined in writing to participate, 42 (33%) did not respond to any mailings, and 4 (3%) could not be located. Respondent
physicians came from a variety of professional specialties (Table II). The majority of postresidency physicians involved were in their earlier years of practice (Table III). Of the 47 physicians who responded to this question, 37 (79%) had less than 9 years' experience with ventilatorassisted children, which, for the most part, corresponded to their years in practice. Most physicians (hospital and community based) had worked with one or several children receiving prolonged mechanical ventilation (Table IV), but 27 (53%) had worked with fewer than six during their years in practice. Type o f hospital settings. Of the physicians surveyed, 45 (88%) indicated they were in hospital settings (privileged or hospital based) that had academic affiliations. Of the 44 respondents to this question, 8 (18%) were affiliated with small hospitals (less than 100 total beds), 16 (36%) with medium-sized hospitals (100 to 300 beds), and 20 (45%) with hospitals that had more than 500 beds. Only 12 physicians (27%) were affiliated with children's hospitals.
380
Goldberg and Monahan
The Journal of Pediatrics March 1989
Table II. Specialties of physicians and their responses Specialty
No.
Pediatrics Neonatology Pulmonology Family practice Intensive care Rehabilitation Otorhinolaryngology Neurosurgery Orthopedics Radiology Cardiology Oncology Neurology Total
12 9 6 5 5 5 2 2 1 1 1 1 1 51
"Primary physlcian"
"In community"
9 2 4 4 3 1 1 2 0 0 t 1
"Feel adequately prepared"
5 3 1 3 2 2 0 1 0 1 0 1 O 19
1 29
9 4 4 3 3 3 1 2 1 1 1 0 1 33
T a b l e III. Experience with ventilator-assisted children related to years in practice Length of tlme in practice (yr)
Experience with children assisted by ventilators (yr)
0-3
4-8
9-15
16-25
26-40
Total
0-3 4-8 9-15 16-25 26-40
5 3 --.
5 10 1 --
4 7 4 --
---2
1 ---1
15 20 5 2 1
.
.
.
Residents were excluded;five physiciansdid not respond;somerespondentsmay have includedtheir residencyin their years of experience.
Of the 32 physicians (63%) affiliated with institutions that served both adults and pediatric patients, 7 (22%) stated that their institution had fewer than 10 pediatric beds, 17 (53%) had 11 to 50 pediatric beds, and 11 (34%)had 51 to 100 pediatric beds. Primary care physicians. The questionnaire defined the primary physician as the one who "had the primary responsibility for the overall management of the child." Fifty-one (100%) of the physician respondents agreed that the ventilator-assisted child needed a primary care physician, and 29 (57%) considered themselves to be the primary physician. As seen in Table II, physicians who indicated that they took responsibility for primary care represented diverse specialties. Of the major responsibilities mentioned, 11 (38%) primary care physicians indicated that their responsibilities included acute care, 7 (24%) mentioned ventilator management, and 5 (17%) mentioned "well care." Twenty-two (41%) of the respondents did not consider themselves to be the primary care physician. Nevertheless, of their most common responsibilities relative to the child, 16 (76%) mentioned consultation, 10 (48%) acute care, 9
(43%) general care to meet the overall needs of the child, 7 (33%) the meeting of rehabilitation needs, 6 (28%) the meeting of equipment needs, and 5 (24%) ventilator management. RESULTS
Community-based physicians. Of the 51 respondents, 47 (92%) thought that it was important to have a communitybased physician to ~provide care for the child. Forty-four (86%) of the physicians lived less than 20 miles from the child. Of these 44 physicians 16 (36%) lived less than 5 miles, 10 (23%) lived 5 to 10 miles, and 18 (41%) lived 10 to 20 miles from the child. Nineteen (37%) of the physicians stated that they practiced in the child's "community" (Table II); the majority were pediatricians, family practitioners, or neonatologists. Forty (78%) respondents noted that there was a physician in the community who provided care in their absence. In the event of an emergency, 41 (80%) of the physicians sent the child to the local emergency room. Both for emergency and routine care, local facilities were preferred by all physicians. Adequacy of physician training. Thirty-three (65%) of
Volume 114 Number 3
Home health care for children assisted by mechanical ventilation
the physicians surveyed believed that they had been adequately prepared to meet the needs of their patient in home care. However, of the 18 who did not feel adequately prepared, the majority did not indicate a need for assistance. Those who requested assistance mentioned continuing education, communication or cooperation with the local or tertiary care physician, community resources, respiratory or critical care experience, or more expertise in pediatrics. Participation and the home care plan. Thirty-four (67%) of the physicians reported that the child in their care had a written home health care plan. Of those physicians who indicated that a written plan existed, 33 (97%) were involved in writing it. Specialists participating in the development of the plan included pediatricians (90%), intensivists (75%), and neonatologists, pulmonologists, neurologists, neurosurgeons, laryngobronchologists, physiatrists, oncologists, and cardiologists. For those physicians who did not participate in the development of the plan, all except one indicated that they would have wanted to participate. In addition to the original planning, 29 (57%) physicians approved subsequent changes in the home care plan. The respondents believed that the major roles of the physician responsible for initiating discharge included continuing and primary care, medical follow-up and consultation, and serving as a resource to other physicians and health care professionals. Physicians indicated that they also have roles in home care planning, implementation, evaluation, and subsequent modification of the plan after hospital discharge with the assistance of parents, nurses, and respiratory care personnel. Involvement with the hospital discharge team. Thirty-one (61%) of physician respgndents were affiliated with a hospital that had a designated discharge team. This number correlated positively with the number of beds in the hospital of affiliation. Of the 20 physicians who did not have a discharge team at their institution, 9 (45%) said they needed one. In the absence of a discharge team, they recruited nurses, social workers, physicians, or other personnel to create an ad hoc discharge-home care plan. Regarding who is responsible for the selection of provid~ ers of durable medical equipment, physicians mentioned themselves, the hospital discharge team, parents, and respiratory therapists. The most prevalent criteria for selection of DME providers included cost, reliability (dependability), and availability of the vendor. Regarding the selection of the ventilator, 30 (59%) of the physicians consulted other physicians, respiratory care personnel, or both. The minority mentioned that they consulted with DME providers, nursing staff, or social workers (or a
38 1
T a b l e IV. Experience by physician respondents in caring
for children requiring prolonged mechanical ventilation No. of children "ever served" 1
2 3-5 6-10 11-20 21-30 31-40 "Many"
No. of physicians
11 7 9 3 4 3 2 7 46
Of the 51 respondents,fivedid not respondto this question. combination of these) for ventilator selection. Regarding responsibility for the selection of the home health agency to provide nursing services to the home, the majority mentioned the parents, the discharge team, or the funding agency (or a combination of these). Follow-up after hospital discharge. After discharge, there appeared to be a relatively low level of use of the resources of the discharging hospital. The major postdischarge responsibility was rehospitalization for emergency care. Physicians did not assign much responsibility to the discharging hospital for follow-up evaluation; only nine (18%) physicians cited follow-up or evaluation as the responsibility of the hospital discharge team. Fifteen (29%) indicated that follow-up was the responsibility of the physician, and 20 (54%) stated that the child should be examined by the physician every 3 to 6 months. To better serve the child after discharge, physicians believed that they needed more access to information. Once the child returned to the community, 28 (54%) physicians received reports from nursing agencies and 22 (43%) from DME providers. Eighteen (15%) of the physician respondents received no reports from the agencies or equipment providers. Twenty-three (45%) of the physicians indicated a need to receive reports from professionals who provide home service to their patient. Seventeen (33%) respondents believed that the physician should be responsible for follow-up changes in ventilator settings after discharge. Physicians indicated that most changes in ventilator settings were made in the home; only six (12%) thought that hospitalization was necessary for such changes. However, seven (14%) physicians reported that they had readmitted their patients to the hospital for this purpose. Of the 35 physicians who indicated that changes were made in their patients' ventilator settings since discharge, 22 physicians had given the order for the change and 13 indicated it was done by another physician. When changes were made in the home, communication to
382
Goldberg and Monahan
care givers was more often verbal than written. Twentyfour (47%) physicians gave verbal orders to nurses in the home, 15 (29%) to parents, and 13 (25%) to respiratory therapists. Twenty-eight (55%) physicians indicated that clinical observation was the primary means used for determining the appropriateness of changes in ventilator settings in the home. Physiologic measurements used included blood gas values (23 [45%]), oximetry (22 [43%]), and transcutaneous monitoring (11 [22%]). DISCUSSION The 40% response rate, although an acceptable rate for a mailed survey, may indicate a biased sample. Physicians who chose to respond may have differed from those that did not. However, the characteristics of the respondents suggest otherwise. For example, the sample of respondent physicians was normally distributed across hospital size, and there was a diversity among specialty groups, those who performed primary and nonprimary care, and community and non-community-based physicians. Approximately 50% of those surveyed indicated that they prescribe changes in ventilator settings. Therefore the heterogeneity of the sample would seem to preclude a skewed sample. The majority of physician respondents perceived themselves as involved in primary care, the development of the home care plan, evaluation, and subsequent plan modification irrespective of medical specialty group. This perception was contrary to the assumption that a specialist was needed to provide consultation and that primary care of the child was then turned over to the pediatrician or family practitioner. It is unknown what percentage of specialists surveyed had completed pediatric residencies. The majority of the physicians surveyed had a relatively minimal number of years of experience (less than 4 years) and followed small numbers of these children (less than 6). This may be related in part to the fact that the discharge of the ventilator-assisted child to his home was a largely unknown practice before 1979. Physicians surveyed indicated a need for a designated discharge team, a defined discharge process, or both. When a designated team did not already exist, one was usually created for that purpose. Physicians participated in the development of the home care plan and indicated that their participation after discharge was important. However, there was no overall agreement as to the frequency and methods for follow-up after discharge. The majority relied on local resources for emergency and routine care, and, in general, there was a low level of use of the services provided by the discharging hospital once the child was home. A strong case was made for community-oriented case management. Physicians who indicated an interest in follow-up reports
The Journal of Pediatrics March 1989
from nursing agencies and equipment providers were receiving them on a variable basis. There was an acknowledgment by many of these physicians of the need for a family-centered program with a central role for parents in selecting home nursing services and making changes in the home care plan. Physicians surveyed differed in their experience in selecting DME providers. This job was most often allocated to .other members of the discharge team. The majority also consulted with others in the selection of the ventilator. Most physicians thought that hospitalization is not necessary when changes are made in ventilator settings. However, communication patterns differed widely when changes in these settings were made. It was not clear whether the communication patterns with parents and health professionals working in the home were outlined before discharge or happened spontaneously when a need arose. Verbal orders over the telephone from the physician must be documented in writing, both to minimize any problems that may arise because of the multitude of care givers in the home and to prevent the risk of medical liability. The majority of physicians felt adequately prepared to meet the child's needs, but those who did not showed little interest in increasing their preparedness. One or more of the following reasons may apply: 1. The early years of the C H H N I Project focused on facilitating the hospital discharge of these children to home throughout the state, which may have increased the knowledge base of many of these physicians. 2. Physicians feel comfortable with the family's expertise and therefore often rely on the family's judgment for making changes in the home care plan. 3. Given the relative inexperience with these children, the ventilator-assisted child may represent a small majority in the physician's practice, and therefore a lot of time spent on further education may not be justified. 4. The medical conditions of the majority of the children served by these physicians are stable and therefore require minimal intervention. 5. The reports received from the home health care agencies and equipment vendors on the status of the child minimize the need for continuing education. CONCLUSION A model for discharge and home care planning should clarify relationships among physicians and establish mechanisms of accountability for all persons involved in caring for the child. It must be community based and must include physician involvement at both the tertiary and
Volume 114 Number 3
Home health care for children assisted by mechanical ventilation
local levels. Roles and responsibilities should be established, to the extent possible, for both the physician based in the tertiary care center and the community-based physician before hospital discharge. The community-based physician should be identified early in the planning process and should have the opportunity to supply input into the home care plan and to receive training, if needed, at the tertiary care center. Because of the wide range of physicians' qualifications, the role of the physician will vary according to expertise and needs. The physicians' preference to provide routine evaluative and most emergency care at the local community level suggests that the physicians support community-based care for these patients. Once the child is home, physicians are part of a team that includes parents, community health care providers, home medical equipment providers, funders, and others. The physician, in partnership with the parents and other members of the team, should help define those roles and provide support in the maintenance of those guidelines and any subsequent changes. Development and support of resources at the community level, as well as case management, is essential for the success of home care. Direct physician participation is crucial for the delivery of highquality care. Perhaps the preponderance of specialists involved in primary care indicates that the medical complexity of these children's disease requires a long-term intensive commitment by the physician involved in their care. The role of all physicians, regardless of specialty, will change in the future as home care becomes a more frequent option for children with complex medical needs, necessitating the direct involvement of physicians as members of the home care team. It is essential to provide physicians with educational
38 3
opportunities to make them acquainted with, and to help them better understand, the realities of home care. Physicians in Illinois have had exposure to some innovative approaches to community care of ventilator-assisted children. In addition, the familities and home care providers have had attention paid to their preparation for home care by extensive training programs. Because of the vital role physicians must play in home care, efforts should be undertaken to give them full access to updated information so that they may have the incentive for full direct participation. REFERENCES
1. Burr BH, Guyer B, Todres ID, et al. Home care for children on respirators. N Engl J Med 1983;309:1319-23. 2. Downes J J, Schreiner MS, Kettrick RG, et al. Chronic respiratory failure in infancy: causes and survival. Crit Care Med 1984;12:339. 3. Frates RC, Splaingard ML, Harrison GM. Outcome of home mechanical ventilation for children. J PEDIATR 1985;106: 850-6. 4. Goldberg AI, Faure EAM, Vaughn CJ, et al. Home care for life-supported persons: an approach to program development. J PEDIATR 1984;104:785-95.
5. O'Donohue WJ, Giovannoni RM, Goldberg AI, et al. Longterm mechanical ventilation: guidelines for management in the home and at alternative community sites. Chest 1984; 86:358-65. 6. Schreiner MS, Downes J J, Kettrick RG, et al. Chronic respiratory failure in infants with prolonged ventilator dependency. JAMA 1987;258:3398-404. 7. Goldberg AI. Home health care for life-supported persons: new challenges for physicians. Chicago Med 88, March 7, 1985:340-4. 8. Report of the Surgeon General's Workshop. Children with handicaps and their families: case example--the ventilatordependent child, Washington, D.C.: U.S. Department of Health and Human Services, 1983.
To obtain the physician's perspective concerning their care of children at home who required prolonged life-supportive medical technology, we conducted a mailed survey of 126 physicians caring for 25 children assisted by ventilators who had been discharged from 11 lllinois hospitals to their homes. The 51 (41%) physicians who responded included those practicing in many specialties from a variety of hospital settings throughout lllinois. The majority of respondents had less than 4 years' experience with ventilator-assisted children and were in their earlier years of practice. Most physicians surveyed had participated in discharge planning and maintained an active role with their patients a t home after discharge. The majority believed that changes in ventilatory settings could be accomplished in the home and found hospitalization unnecessary for adjustments of the home care prescription. The physicians thought that the roles and responsibilities should be defined for both the tertiary and community-based physician before hospital discharge, and that d e v e l o p m e n t and support of resources at the community level were essential for the success of home care. (J PEDIATR1989;114:378-83)
Home care is one option for children who require longterm care that involves life-supportive medical technology.lL7 Physicians are essential primary health care provide r s for such patients, but little is known about which medical specialty, level of experience, and type of hospital affiliation are most appropriate for providing primary care to children requiring life support in the home. In 1983 the U.S. Department of Health and Human Services, Public Health Service, Division of Maternal and Child Health, awarded a grant to the University of Illinois at Chicago Division of Services for Crippled Children for development of a model of home care and discharge planning for children requiring prolonged mechanical ventilation at home. This project, the Children's Home Health Network of Illinois, surveyed families with children
Submitted for publication May 6, 1988; accepted Oct. 3, 1988. Reprint requests: Allen I. Goldberg, MD, MM, Medical Director, Respiratory Care, The Children's MemorialHospital, 2300 Children's Plaza, Chicago, IL 60614. 378
assisted by ventilators in the home and their care givers to develop a model appropriate for all children with special long-term needs. The C H H N I physician survey was conducted to provide insights into the concerns and needs of physicians who were involved with the day-to-day care of ventilatorCHHNI DME DSCC
Children's Home Health Network of Illinois Durable medical equipment Division of Services for Crippled Children
assisted children in hospitals or at home in Illinois. Eleven hospitals were involved in the discharge of the 25 children identified by C H H N I . METHODS Twenty-five ventilator-assisted children were discharged to their homes between 1979 and 1986 in Illinois through collaboration with DSCC. 8 Description of the chi!dren at the time of the study is presented in Table I. T h e major roles of DSCC were to facilitate the funding process before
l/olume 114 Number 3
Home health care f o r children assisted by mechanical ventilation
379
Table I. Biographic data of 25 ventilator-assisted children
Child
Age at discharge (yr)
Length of time home (yr)
Race
1 2 3
6.0 2.5 4.5
2 2.5 1.5
B W W
4 5 6 7 8 9 10 11
1.0 2 3 13.5 1 1.5 2 8
4 6 5 0.5 3 3.5 1 3
W W W W W W W W
12 13 14 15 16 17 18 19 20 21 22 23 24 25
0.8 3 4 4 0.7 3 5 0.5 16 14 19 2 1 15
1 7.5 1 4 1.3 1.3 6 1 1.3 0.5 2 1 1 4
W W W W W W W W H W W W W W
Ventilator model
Diagnosis Congenital myopathy Congenital myotonic dystrophy Intraventricular hemorrhage leading to quadriplegia Tri0sephosphate isomerase deficiency Quadriplegia, birth trauma Quadriplegia, auto accident Muscular dystrophy Subacute necrotizing encephalopathy Bilateral diaphragmatic paralysis Nemaline myopathy Quadriplegia, auto accident BPD Central hypoventilation, birth asphyxia Quadriplegia, congenital epidural cyst Central hypoventilation syndrome Central hypoventilation syndrome Cerebral palsy, BPD Multiple congenital anomalies BPD Congenital degenerative neuropathy Muscular dystrophy Quadriplegia; auto accident BPD BPD Pulmonary fibrosis, Klippel-Feil syndrome
Thompson 3000* LP-4, LP-gt LP-4 LP-3, LP-3
Pvv~ Emerson,wThompson 3000 Emerson, Thompson M25 LP-4 Thompson MA-I LP-4, LP-4 Thompson M25, Thompson, M25 LP-4, LP-4 MA-1, LP-4 LP-3, Emerson MA- 1, Emerson LP-3, LP-3 LP-4, LP-4 Emerson MA-1, MA-1 LP-3, LP-3 Rocking bedw LP-4 Thompson Thompson MA-1, Thompson LP-4 PVV, Bennett AP-5*
BPD, Bronchopulmonarydysplasia;H, Hispanic. *Puritan-BennettCorp, Portable VentilatorDivision,Boulder,Colo. tAccutron, Inc., Minneapolis,Minn. :~Lifecare, Boulder,Colo. w H. EmersonCo., Cambridge,Mass.
and after hospital discharge and to provide case management services once the child was home. For this study, DSCC provided assistance in identifying physicians to provide care for these children after the initial hospital discharge. One hundred twenty-six physicians were noted to have written orders for care or provided consultation in the DSCC case records before or after hospital discharge, an average of 4.4 physicians per child. All those physicians were mailed questionnaires that included both structured. and open-ended questions. Physicians were contacted by mail at 2-week intervals for up to 8 weeks to increase the response rate. They were also given the opportunity to decline to participate by mailing back a postcard included with the questionnaire. Description of sample Physician experience. Of the total sample, 51 physicians (40%) completed the questionnaire, 29 (23%) declined in writing to participate, 42 (33%) did not respond to any mailings, and 4 (3%) could not be located. Respondent
physicians came from a variety of professional specialties (Table II). The majority of postresidency physicians involved were in their earlier years of practice (Table III). Of the 47 physicians who responded to this question, 37 (79%) had less than 9 years' experience with ventilatorassisted children, which, for the most part, corresponded to their years in practice. Most physicians (hospital and community based) had worked with one or several children receiving prolonged mechanical ventilation (Table IV), but 27 (53%) had worked with fewer than six during their years in practice. Type o f hospital settings. Of the physicians surveyed, 45 (88%) indicated they were in hospital settings (privileged or hospital based) that had academic affiliations. Of the 44 respondents to this question, 8 (18%) were affiliated with small hospitals (less than 100 total beds), 16 (36%) with medium-sized hospitals (100 to 300 beds), and 20 (45%) with hospitals that had more than 500 beds. Only 12 physicians (27%) were affiliated with children's hospitals.
380
Goldberg and Monahan
The Journal of Pediatrics March 1989
Table II. Specialties of physicians and their responses Specialty
No.
Pediatrics Neonatology Pulmonology Family practice Intensive care Rehabilitation Otorhinolaryngology Neurosurgery Orthopedics Radiology Cardiology Oncology Neurology Total
12 9 6 5 5 5 2 2 1 1 1 1 1 51
"Primary physlcian"
"In community"
9 2 4 4 3 1 1 2 0 0 t 1
"Feel adequately prepared"
5 3 1 3 2 2 0 1 0 1 0 1 O 19
1 29
9 4 4 3 3 3 1 2 1 1 1 0 1 33
T a b l e III. Experience with ventilator-assisted children related to years in practice Length of tlme in practice (yr)
Experience with children assisted by ventilators (yr)
0-3
4-8
9-15
16-25
26-40
Total
0-3 4-8 9-15 16-25 26-40
5 3 --.
5 10 1 --
4 7 4 --
---2
1 ---1
15 20 5 2 1
.
.
.
Residents were excluded;five physiciansdid not respond;somerespondentsmay have includedtheir residencyin their years of experience.
Of the 32 physicians (63%) affiliated with institutions that served both adults and pediatric patients, 7 (22%) stated that their institution had fewer than 10 pediatric beds, 17 (53%) had 11 to 50 pediatric beds, and 11 (34%)had 51 to 100 pediatric beds. Primary care physicians. The questionnaire defined the primary physician as the one who "had the primary responsibility for the overall management of the child." Fifty-one (100%) of the physician respondents agreed that the ventilator-assisted child needed a primary care physician, and 29 (57%) considered themselves to be the primary physician. As seen in Table II, physicians who indicated that they took responsibility for primary care represented diverse specialties. Of the major responsibilities mentioned, 11 (38%) primary care physicians indicated that their responsibilities included acute care, 7 (24%) mentioned ventilator management, and 5 (17%) mentioned "well care." Twenty-two (41%) of the respondents did not consider themselves to be the primary care physician. Nevertheless, of their most common responsibilities relative to the child, 16 (76%) mentioned consultation, 10 (48%) acute care, 9
(43%) general care to meet the overall needs of the child, 7 (33%) the meeting of rehabilitation needs, 6 (28%) the meeting of equipment needs, and 5 (24%) ventilator management. RESULTS
Community-based physicians. Of the 51 respondents, 47 (92%) thought that it was important to have a communitybased physician to ~provide care for the child. Forty-four (86%) of the physicians lived less than 20 miles from the child. Of these 44 physicians 16 (36%) lived less than 5 miles, 10 (23%) lived 5 to 10 miles, and 18 (41%) lived 10 to 20 miles from the child. Nineteen (37%) of the physicians stated that they practiced in the child's "community" (Table II); the majority were pediatricians, family practitioners, or neonatologists. Forty (78%) respondents noted that there was a physician in the community who provided care in their absence. In the event of an emergency, 41 (80%) of the physicians sent the child to the local emergency room. Both for emergency and routine care, local facilities were preferred by all physicians. Adequacy of physician training. Thirty-three (65%) of
Volume 114 Number 3
Home health care for children assisted by mechanical ventilation
the physicians surveyed believed that they had been adequately prepared to meet the needs of their patient in home care. However, of the 18 who did not feel adequately prepared, the majority did not indicate a need for assistance. Those who requested assistance mentioned continuing education, communication or cooperation with the local or tertiary care physician, community resources, respiratory or critical care experience, or more expertise in pediatrics. Participation and the home care plan. Thirty-four (67%) of the physicians reported that the child in their care had a written home health care plan. Of those physicians who indicated that a written plan existed, 33 (97%) were involved in writing it. Specialists participating in the development of the plan included pediatricians (90%), intensivists (75%), and neonatologists, pulmonologists, neurologists, neurosurgeons, laryngobronchologists, physiatrists, oncologists, and cardiologists. For those physicians who did not participate in the development of the plan, all except one indicated that they would have wanted to participate. In addition to the original planning, 29 (57%) physicians approved subsequent changes in the home care plan. The respondents believed that the major roles of the physician responsible for initiating discharge included continuing and primary care, medical follow-up and consultation, and serving as a resource to other physicians and health care professionals. Physicians indicated that they also have roles in home care planning, implementation, evaluation, and subsequent modification of the plan after hospital discharge with the assistance of parents, nurses, and respiratory care personnel. Involvement with the hospital discharge team. Thirty-one (61%) of physician respgndents were affiliated with a hospital that had a designated discharge team. This number correlated positively with the number of beds in the hospital of affiliation. Of the 20 physicians who did not have a discharge team at their institution, 9 (45%) said they needed one. In the absence of a discharge team, they recruited nurses, social workers, physicians, or other personnel to create an ad hoc discharge-home care plan. Regarding who is responsible for the selection of provid~ ers of durable medical equipment, physicians mentioned themselves, the hospital discharge team, parents, and respiratory therapists. The most prevalent criteria for selection of DME providers included cost, reliability (dependability), and availability of the vendor. Regarding the selection of the ventilator, 30 (59%) of the physicians consulted other physicians, respiratory care personnel, or both. The minority mentioned that they consulted with DME providers, nursing staff, or social workers (or a
38 1
T a b l e IV. Experience by physician respondents in caring
for children requiring prolonged mechanical ventilation No. of children "ever served" 1
2 3-5 6-10 11-20 21-30 31-40 "Many"
No. of physicians
11 7 9 3 4 3 2 7 46
Of the 51 respondents,fivedid not respondto this question. combination of these) for ventilator selection. Regarding responsibility for the selection of the home health agency to provide nursing services to the home, the majority mentioned the parents, the discharge team, or the funding agency (or a combination of these). Follow-up after hospital discharge. After discharge, there appeared to be a relatively low level of use of the resources of the discharging hospital. The major postdischarge responsibility was rehospitalization for emergency care. Physicians did not assign much responsibility to the discharging hospital for follow-up evaluation; only nine (18%) physicians cited follow-up or evaluation as the responsibility of the hospital discharge team. Fifteen (29%) indicated that follow-up was the responsibility of the physician, and 20 (54%) stated that the child should be examined by the physician every 3 to 6 months. To better serve the child after discharge, physicians believed that they needed more access to information. Once the child returned to the community, 28 (54%) physicians received reports from nursing agencies and 22 (43%) from DME providers. Eighteen (15%) of the physician respondents received no reports from the agencies or equipment providers. Twenty-three (45%) of the physicians indicated a need to receive reports from professionals who provide home service to their patient. Seventeen (33%) respondents believed that the physician should be responsible for follow-up changes in ventilator settings after discharge. Physicians indicated that most changes in ventilator settings were made in the home; only six (12%) thought that hospitalization was necessary for such changes. However, seven (14%) physicians reported that they had readmitted their patients to the hospital for this purpose. Of the 35 physicians who indicated that changes were made in their patients' ventilator settings since discharge, 22 physicians had given the order for the change and 13 indicated it was done by another physician. When changes were made in the home, communication to
382
Goldberg and Monahan
care givers was more often verbal than written. Twentyfour (47%) physicians gave verbal orders to nurses in the home, 15 (29%) to parents, and 13 (25%) to respiratory therapists. Twenty-eight (55%) physicians indicated that clinical observation was the primary means used for determining the appropriateness of changes in ventilator settings in the home. Physiologic measurements used included blood gas values (23 [45%]), oximetry (22 [43%]), and transcutaneous monitoring (11 [22%]). DISCUSSION The 40% response rate, although an acceptable rate for a mailed survey, may indicate a biased sample. Physicians who chose to respond may have differed from those that did not. However, the characteristics of the respondents suggest otherwise. For example, the sample of respondent physicians was normally distributed across hospital size, and there was a diversity among specialty groups, those who performed primary and nonprimary care, and community and non-community-based physicians. Approximately 50% of those surveyed indicated that they prescribe changes in ventilator settings. Therefore the heterogeneity of the sample would seem to preclude a skewed sample. The majority of physician respondents perceived themselves as involved in primary care, the development of the home care plan, evaluation, and subsequent plan modification irrespective of medical specialty group. This perception was contrary to the assumption that a specialist was needed to provide consultation and that primary care of the child was then turned over to the pediatrician or family practitioner. It is unknown what percentage of specialists surveyed had completed pediatric residencies. The majority of the physicians surveyed had a relatively minimal number of years of experience (less than 4 years) and followed small numbers of these children (less than 6). This may be related in part to the fact that the discharge of the ventilator-assisted child to his home was a largely unknown practice before 1979. Physicians surveyed indicated a need for a designated discharge team, a defined discharge process, or both. When a designated team did not already exist, one was usually created for that purpose. Physicians participated in the development of the home care plan and indicated that their participation after discharge was important. However, there was no overall agreement as to the frequency and methods for follow-up after discharge. The majority relied on local resources for emergency and routine care, and, in general, there was a low level of use of the services provided by the discharging hospital once the child was home. A strong case was made for community-oriented case management. Physicians who indicated an interest in follow-up reports
The Journal of Pediatrics March 1989
from nursing agencies and equipment providers were receiving them on a variable basis. There was an acknowledgment by many of these physicians of the need for a family-centered program with a central role for parents in selecting home nursing services and making changes in the home care plan. Physicians surveyed differed in their experience in selecting DME providers. This job was most often allocated to .other members of the discharge team. The majority also consulted with others in the selection of the ventilator. Most physicians thought that hospitalization is not necessary when changes are made in ventilator settings. However, communication patterns differed widely when changes in these settings were made. It was not clear whether the communication patterns with parents and health professionals working in the home were outlined before discharge or happened spontaneously when a need arose. Verbal orders over the telephone from the physician must be documented in writing, both to minimize any problems that may arise because of the multitude of care givers in the home and to prevent the risk of medical liability. The majority of physicians felt adequately prepared to meet the child's needs, but those who did not showed little interest in increasing their preparedness. One or more of the following reasons may apply: 1. The early years of the C H H N I Project focused on facilitating the hospital discharge of these children to home throughout the state, which may have increased the knowledge base of many of these physicians. 2. Physicians feel comfortable with the family's expertise and therefore often rely on the family's judgment for making changes in the home care plan. 3. Given the relative inexperience with these children, the ventilator-assisted child may represent a small majority in the physician's practice, and therefore a lot of time spent on further education may not be justified. 4. The medical conditions of the majority of the children served by these physicians are stable and therefore require minimal intervention. 5. The reports received from the home health care agencies and equipment vendors on the status of the child minimize the need for continuing education. CONCLUSION A model for discharge and home care planning should clarify relationships among physicians and establish mechanisms of accountability for all persons involved in caring for the child. It must be community based and must include physician involvement at both the tertiary and
Volume 114 Number 3
Home health care for children assisted by mechanical ventilation
local levels. Roles and responsibilities should be established, to the extent possible, for both the physician based in the tertiary care center and the community-based physician before hospital discharge. The community-based physician should be identified early in the planning process and should have the opportunity to supply input into the home care plan and to receive training, if needed, at the tertiary care center. Because of the wide range of physicians' qualifications, the role of the physician will vary according to expertise and needs. The physicians' preference to provide routine evaluative and most emergency care at the local community level suggests that the physicians support community-based care for these patients. Once the child is home, physicians are part of a team that includes parents, community health care providers, home medical equipment providers, funders, and others. The physician, in partnership with the parents and other members of the team, should help define those roles and provide support in the maintenance of those guidelines and any subsequent changes. Development and support of resources at the community level, as well as case management, is essential for the success of home care. Direct physician participation is crucial for the delivery of highquality care. Perhaps the preponderance of specialists involved in primary care indicates that the medical complexity of these children's disease requires a long-term intensive commitment by the physician involved in their care. The role of all physicians, regardless of specialty, will change in the future as home care becomes a more frequent option for children with complex medical needs, necessitating the direct involvement of physicians as members of the home care team. It is essential to provide physicians with educational
38 3
opportunities to make them acquainted with, and to help them better understand, the realities of home care. Physicians in Illinois have had exposure to some innovative approaches to community care of ventilator-assisted children. In addition, the familities and home care providers have had attention paid to their preparation for home care by extensive training programs. Because of the vital role physicians must play in home care, efforts should be undertaken to give them full access to updated information so that they may have the incentive for full direct participation. REFERENCES
1. Burr BH, Guyer B, Todres ID, et al. Home care for children on respirators. N Engl J Med 1983;309:1319-23. 2. Downes J J, Schreiner MS, Kettrick RG, et al. Chronic respiratory failure in infancy: causes and survival. Crit Care Med 1984;12:339. 3. Frates RC, Splaingard ML, Harrison GM. Outcome of home mechanical ventilation for children. J PEDIATR 1985;106: 850-6. 4. Goldberg AI, Faure EAM, Vaughn CJ, et al. Home care for life-supported persons: an approach to program development. J PEDIATR 1984;104:785-95.
5. O'Donohue WJ, Giovannoni RM, Goldberg AI, et al. Longterm mechanical ventilation: guidelines for management in the home and at alternative community sites. Chest 1984; 86:358-65. 6. Schreiner MS, Downes J J, Kettrick RG, et al. Chronic respiratory failure in infants with prolonged ventilator dependency. JAMA 1987;258:3398-404. 7. Goldberg AI. Home health care for life-supported persons: new challenges for physicians. Chicago Med 88, March 7, 1985:340-4. 8. Report of the Surgeon General's Workshop. Children with handicaps and their families: case example--the ventilatordependent child, Washington, D.C.: U.S. Department of Health and Human Services, 1983.