Children with life-threatening illnesses (LTIs) are hospitalized more often and spend more days in the hospital than children without LTIs. Hospitalizations may be associated with changes in health status of children with LTIs and thus alter their care needs significantly. Transitional care is particularly relevant for this population. Pediatric palliative care clinicians and teams are well-positioned to improve transitional care of children with LTIs by facilitating communication between clinicians and educating clinicians about issues related to children with LTIs.
Key points
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Hospitalizations may be associated with changes in health status and care needs of children with life-threatening illnesses (LTI).
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Challenges in transitioning children with LTI to and from acute care settings are many.
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Strategies to improve transitional care exist and include improving communication between clinicians across clinical settings, anticipating medication problems, and preparing families for the transition.
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Pediatric palliative care teams can play an important role in transitional care of children with LTI.
Introduction
There has been a recent focus in reducing hospital readmissions in the United States, especially among Medicare beneficiaries, as a way to reduce health care costs. This has resulted in increased attention to the quality of transitional care–delivery of care that involves seamless transitions of patients from acute inpatient care settings to the community to other clinical care settings. Most quality-improvement activities and research in transitional care target hospitalized adults. Readmissions rates, however, have more recently been included as a quality measure of pediatric health care, and quality-improvement efforts aimed at transitional care for hospitalized pediatric patients are emerging.
Seamless transitional care involves smooth transition of all aspects of care of patients from one clinical setting to another by maintaining continuity of care. When patients do not receive seamless transitional care, they are at risk of not receiving appropriate medical care that is needed in the setting to which they are transitioned. Poor transitional care of patients results in new problems, such as an adverse event from medication error or worsening of existing problems due to lack of adequate follow-up medical care.
Introduction
There has been a recent focus in reducing hospital readmissions in the United States, especially among Medicare beneficiaries, as a way to reduce health care costs. This has resulted in increased attention to the quality of transitional care–delivery of care that involves seamless transitions of patients from acute inpatient care settings to the community to other clinical care settings. Most quality-improvement activities and research in transitional care target hospitalized adults. Readmissions rates, however, have more recently been included as a quality measure of pediatric health care, and quality-improvement efforts aimed at transitional care for hospitalized pediatric patients are emerging.
Seamless transitional care involves smooth transition of all aspects of care of patients from one clinical setting to another by maintaining continuity of care. When patients do not receive seamless transitional care, they are at risk of not receiving appropriate medical care that is needed in the setting to which they are transitioned. Poor transitional care of patients results in new problems, such as an adverse event from medication error or worsening of existing problems due to lack of adequate follow-up medical care.
Importance of transitional care in children with life-threatening illnesses
As described in the article by Bogetz and colleagues elsewhere in this issue, children with life-threatening illness (LTI) account for greater proportions of hospitalizations and hospital days of all children, compared to a decade ago; and a large proportion of readmissions to children’s hospitals in the United States. Children with LTIs are living longer compared with those a few decades ago. Although these children were cared for in congregate settings in the past, since the 1950s there has been a strong movement toward deinstitutionalization and providing care for children with LTIs in the community. These factors have resulted in a steady increase in the number of children with LTIs receiving complex medical care at home.
The American Academy of Pediatrics (AAP) developed the concept of a “medical home,” a model of care that is compassionate, continuous, family-centered, coordinated, and delivered by primary care providers (PCPs). The Agency for Healthcare Research and Quality (AHRQ), as an extension of the medical home model, introduced the concept of the “medical neighborhood” and defined it as a patient’s medical home, with all specialists and community agencies serving the patient. The models in Fig. 1 represent the medical neighborhood for children by adapting a model proposed by another AHRQ white paper to represent medical complexity and care coordination needs. Using the AHRQ model, circles are used to represent the providers and entities involved in an individual’s health care. As seen in Fig. 1 A, for a child with no underlying health condition, the medical neighborhood consists of the medical home and the dentist. For a child with a non–life-threatening condition, such as seizure disorder, the medical neighborhood may in addition consist of a neurologist and a pharmacy (see Fig. 1 B). For a child with LTI, however, who is likely to have impairment of multiple organ systems and significant functional limitations and use assistive technology, the medical neighborhood has many more entities (see Fig. 1 C). Case example 1, a child with LTI who is hospitalized, illustrates the enormous medical complexity of children with LTIs.
Case Example 1 : A 1-year-old girl with Dandy-Walker malformation, seizure disorder, and respiratory failure was hospitalized for 132 days in a tertiary care medical center. During this hospitalization, she received 187 laboratory draws, 76 radiographs, 16 neurophysiologic evaluations, 5 CT scans, 2 MRIs, and 9 different surgical procedures. She received care from 20 different specialty health care teams in addition to the primary team of physicians and nurses. She received supportive care from pastoral care, palliative care, and child-life therapy. At the time of discharge home, she had new medical needs, a tracheostomy through which she received oxygen, and a gastrostomy tube and received 15 different medications. In the 6 months after her discharge, she had 18 specialty clinic appointments and was hospitalized thrice.
Because children with LTIs are hospitalized more often, have multiple clinicians and agencies involved in their care in the community and in the hospital, and have complex medical care needs at home, transitional care is more complex for this population with a greater opportunity for problems.
Types of transitions involving acute care setting
In this article, the term, hospital , refers to the acute inpatient care setting and caregivers refers to parents and other informal caregivers of children with LTIs. There are different types of transition that can occur during hospitalization in an acute care setting. These are described in Box 1 . Most children with LTIs transition from the hospital to home. Less commonly, children can be transitioned from the hospital to other facilities, such as long-term care, rehabilitation, or hospice facilities, and other hospitals.
Transition out of the acute care setting (hospital)
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Home: transitioning involves transitioning to community clinicians or entities
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PCPs
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Specialist physicians
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Home health
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Home hospice
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DME companies
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Pharmacy
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Emergency medical services
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Physical therapy, occupational therapy, and other therapy services
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School
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Other special services for children with LTIs, such as Medicaid waiver programs and early intervention services.
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Inpatient hospice facility
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LTCF
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Rehabilitation facility
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Other hospitals
Transition into the acute care setting (hospital)
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Home
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Other facilities (eg, inpatient hospice facility or LTCF)
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Other hospitals
Common challenges and opportunities in providing transitional care to children with LTIs
In addition to a change in clinical setting, hospitalization involves change in clinicians and teams delivering care to a child with LTI resulting in discontinuity in care delivery. Moreover, during hospitalization, a child’s health condition can change significantly. The change in health condition of a child with LTI during hospitalization often leads to changes in the medications, technology, nutrition, specialist care, tests and procedures, support services, and home care services that the child receives. Case example 2 shows how a common illness resulting in hospitalization changed the health condition of a child with LTI.
Case Example 2 : A 10-month-old child with Down syndrome, congenital heart disease that was repaired, and pulmonary hypertension was receiving medical care from her primary care physician and 3 specialists and did not receive home health nursing services. She was hospitalized for respiratory syncytial virus bronchiolitis. At the time of admission, she had a gastrostomy tube for nutrition and medication administration and nasal cannula oxygen and received 5 medications (furosemide, enalapril, pantoprazole, inhaled albuterol, and corticosteroid). She had a complicated 6-month hospital course. At the time of discharge, her health care needs had increased significantly. She had a tracheostomy tube through which she received supplemental oxygen; she received continuous feeds through the gastrostomy tube, 17 different medications, home health nursing services, and follow-up with 10 specialist services.
Many barriers to transitioning children with LTIs across clinical settings exist. Over the past several decades, there has been a shift in how health care is delivered. For example, the introduction of the hospitalist model of care delivery has resulted in different clinicians providing care for children in the hospital and the community. Second, advances in technology, medications, and testing have increased the complexity of medical care, creating greater opportunities for errors during transitions across clinical settings. Third, there has been a steady increase in complex medical care delivered at home and a shift toward delivering medical care at home rather than in the hospital.
There are barriers to transitional care at the clinician level as well. Hospital and community-based clinicians report not having adequate time to perform tasks related to transitional care. Moreover, there is not clear assignment of responsibility of roles about who performs the tasks related to transitional care. Until recently, quality of transitional care has not been a focus of the US health care system. As such, the health care system is not organized for delivering optimal transitional care.
In the following sections, various challenges in transitional care are identified and strategies that facilitate seamless transitions across settings are provided.
Communication with Clinicians and Other Agencies
Communication is the most important aspect of transitioning children with LTIs. As children with LTIs are transitioned from the hospital to the community, there should be effective communication between hospital-based clinicians and community-based clinicians. A systematic review showed that communication and information problems at the time of discharge are common and result in potential harms to patients discharged to the community.
Clinicians report several barriers in communicating with other clinicians during transition of children across clinical settings. Some of these barriers are listed.
Clinicians’ perceived barriers to communication across clinical settings
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Lack of time
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Lack of reimbursement
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Lack of agreement between clinicians about information to be communicated
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Lack of knowledge about the best method of communication
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Difficulty accessing clinicians in other clinical settings
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Communication with primary care providers
PCPs play a major role in the care of children with LTIs in the community and often serve as the primary resource for caregivers and other community clinicians, such as home health nurses. It is imperative that there is effective communication between hospital-based clinicians and PCPs.
Over the past 10 years, increasingly hospital-based physicians rather than PCPs provide medical care for children with LTIs when they are hospitalized. One of the concerns of this model of care delivery is the lack of continuity of care during transitions to and from the hospital. The AAP describes communication with PCPs as one of the responsibilities of hospital-based clinicians. Communication between hospital-based physicians and PCPs is, however, not optimal.
In 2011, a survey of PCPs of children (pediatricians, family physicians, and midlevel clinicians) was conducted in northwest North Carolina that inquired about their preferences for and experiences with communication of hospital-based clinicians. Of the 123 respondents, a large proportion reported need for communication during hospitalization, but their communication needs were largely unmet ( Table 1 ). These observations were similar to other reports on this topic.
| Communication Type | Preference for Receipt of Information (Yes) | Receipt of Information (Usually/Always) |
|---|---|---|
| Notification about child’s hospitalization | 96% | 58% |
| Updates during hospitalization | 87% | 43% |
| Discharge plan | 98% | 58% |
When inquired specifically about discharge summaries, 97% of PCPs in the North Carolina survey reported that they needed discharge summaries. Only 76% reported, however, receiving discharge summaries consistently and 33% received discharge summaries before the first follow-up visit with their patients. Only 56% rated the completeness of discharge summaries as excellent or very good. PCPs’ preference for information to be included in the discharge plan were discharge medication (99%), discharge diagnoses (98%), issues to follow-up (94%), hospital course (81%), radiology reports (76%), laboratory results (76%), and consult notes (76%).
Strategies to improve communication between hospital-based clinicians and PCPs
Accuracy and thoroughness of discharge summaries are critically important for effectively transitioning children with LTIs from the hospital. Discharge summaries should have accurate information about medications, nutrition, and details about technology used by a child with LTI. Discharge summaries should also include information about follow-up appointments with specialist physicians and other clinicians and other issues to follow-up after discharge. The discharge summary should be sent to the PCP in a timely fashion preferably before the first postdischarge follow-up. Other pertinent records that help facilitate continuation of care of a child with LTI in the community should be shared with the PCP as well.
Experience suggests that direct phone communication with PCP prior to discharge of a child with LTI is valuable in communicating pertinent information to the PCP to continue care in the community. Communication by phone, however, is not the most preferred method of communication for both hospital-based and PCPs. This is likely due to time constraints and logistical difficulties.
In addition to communication prior to discharge, PCPs should be notified at the time of hospitalization and when major changes in clinical condition of a child with LTI occur. In the survey of PCPs, 61% of the respondents said that they usually/always visit their patients hospitalized at the children’s hospital. Many PCPs have long-standing relationships with children with LTIs and their families. PCPs’ perspectives on children and the caregivers, which are often formed in the context of a longitudinal relationship over several years, are helpful for hospital-based clinicians, who may or may not know a child and family well. PCPs’ perspective is especially valuable in situations where major decisions, such as use of life-sustaining treatments, are made.
Communication with home health nurses
Home health nursing is skilled nursing care at home that is either intermittent (nursing visits) or continuous (private duty nursing [PDN]). PDN is continuous, complex nursing services provided by a licensed nurse at a recipient’s home. The demand for pediatric home health care services (including home health nursing) has grown substantially, and the number of children with LTIs receiving care at home from home health nursing agencies has steadily increased.
Home health nursing services are not uniformly available. It may be difficult to find a home health agency that serves some geographic areas, especially those that are rural. Even if a home health agency is available, home health nurses with expertise in caring for children with LTIs may not be available.
In 2012, a focus group of stakeholders involved in transitioning children with LTIs from the hospital to the community conducted in northwestern North Carolina. In this focus group, home health nurses reported that they value accurate home health orders when children with LTIs are discharged. They reported that changes made to the orders at the last minute prior to discharge are problematic. Home health nurses found direct communication with hospital-based nurses about children with LTIs prior to discharge valuable.
Strategies to improve communication with home health nursing agencies
Typically, home health agencies develop a plan of care for their clients based on the home health orders written by physicians. Discharge home health orders should be detailed and accurate to help home health agencies develop this plan of care. Physicians should avoid generic “resume home health” discharge orders because the home health nursing needs prior to hospitalization may not be the same as after hospitalization. Clinicians should remember that home health nursing agencies need orders for all medications, including vitamins, supplements, and nutrition, if they are to be administered by home health nurses. So, if medications or nutrition change during hospitalizations, home health nursing orders should reflect these changes. Discharge home health orders should be aligned with caregiving at home and hence could be different from orders for care in the hospital. Children with LTIs can have many home health orders; hence, changes to existing home health orders should be identified clearly and specifically.
Communication with hospice clinicians
Children with LTIs with a life expectancy of 6 months or less could be transitioned to hospice care. Some children with LTIs are transitioned to an inpatient hospice facility. More commonly, children with LTIs receive hospice services at home. The Affordable Care Act mandates that children are eligible to receive hospice care concurrently with cure-directed therapy (described in the article by Bogetz and colleagues elsewhere in this issue).
The availability and extent of hospice services for children are often limited and vary by geographic region. Hospice agencies serve many geographic areas, but pediatric expertise in most hospice agencies is also often limited or lacking. Hospital-based clinicians should, therefore, understand the extent of pediatric services and expertise held by the hospice agencies to which they refer. Referral to hospice often involves a collaborative working relationship between pediatric clinicians and hospice clinicians to care for children with LTIs. Pediatric clinicians can be a valuable resource for hospice clinicians (see Case example 3). Pediatric palliative care teams in tertiary care hospitals can serve as resources for hospice agencies with limited pediatric expertise. Some hospice agencies have pediatric expertise and can also be a resource for those with less pediatric expertise.
When a child is transitioned to hospice care, it is important for hospital-based clinicians to communicate with hospice clinicians about the child’s clinical information, goals of care, plan of care especially with regard to symptom management and advance directives, and family characteristics. Hospital-based palliative care clinicians are valuable in facilitating this communication between hospital-based clinicians and hospice clinicians.
Case Example 3 : A 3-month-old girl with inoperable glioma of the brain with extensive cerebral and spinal metastasis was discharged home with hospice care. Symptom management was offered by the oncologist at the tertiary care children’s hospital, and emotional and other support services were provided by the community hospice agency. The oncologist, the pediatric palliative care team, the pharmacy of the children’s hospital, and the community hospice agency worked collaboratively to provide palliative and end-of-life care to the infant. She died peacefully at home 5 weeks after discharge from the hospital.
Communication with emergency medical service providers
Another important agency to communicate with when a child is discharged from the hospital is the emergency medical service (EMS). It may be helpful to contact the nearest EMS to update them about a child with LTI. Care plans ( Fig. 2 ) are helpful in communicating the plan for emergency care about children with LTIs to EMS providers.
In cases of emergency out of the hospital, EMS providers need clear orders for resuscitation or life-sustaining treatments for a child with LTIs. EMS providers are required to provide resuscitation in the event of cardiac arrest and life-saving interventions in the event of an emergency unless there is a physician order stating otherwise. Although a physician’s orders to not resuscitate or to forgo life-sustaining treatments placed in a child’s medical chart are sufficient when a child is hospitalized, these orders are not sufficient for EMS providers when responding to a child at home or in the community. Hence, specific do-not-resuscitate (DNR) forms or medical orders for life sustaining treatments (MOLST) forms are helpful in these situations to clarify the goals of care for children with LTIs. The DNR order form helps clarify resuscitation goals to EMS providers in the event of cardiac arrest. MOLST forms, implemented in many states, provide greater clarification about patients’/caregivers’ goals about life-sustaining treatments in emergency situations. In a survey of EMS providers, Waldrop and colleagues identified several barriers when providing emergency care to seriously ill patients, including lack of education of EMS providers about advance directives and lack of education of other healthcare clinicians and families about EMS providers’ scope of practice.
Families of children with LTIs should be prepared for what to expect when an EMS system is activated. Hospital-based clinicians should anticipate situations where out-of-hospital resuscitation orders may be necessary. Pediatric palliative care clinicians can guide hospital-based clinicians in preparing families for out-of-hospital emergencies, completing the DNR/MOLST forms to align with family goals, and communicating the emergency plan to EMS providers.
Communication with other community clinicians and agencies
Durable medical equipment (DME) companies are important entities in the medical neighborhood of children with LTIs. To address all their needs, some children with LTIs are served by more than one DME company because there is a lot of variability in the services provided by DME companies. Lack of availability of DME companies that provide ventilator care at home may cause substantial delay in discharging children with LTIs from the hospital or limit the option of discharging these children home. Communication with representatives of the DME companies is especially critical for children receiving tracheostomy or chronic mechanical ventilation.
In the transition stakeholder focus group (described previously), DME company representatives mentioned that they do not receive discharge summaries but that discharge summaries would be helpful. They also mentioned that they need more notification time to order special supplies (eg, specific tracheostomy tube) prior to discharge. DME clinicians preferred to be notified of changes in equipment, changes in settings, the rationale for the equipment, and specifics about the equipment (eg, size of tube). It may not be logistically possible to obtain or use equipment and supplies used in the hospital (eg, equipment for oxygen delivery) for use in a home setting. This problem can be addressed if hospital-based clinicians work collaboratively with DME providers prior to discharge of a child with LTI.
As described in Case example 2, change in a child’s health condition leading to hospitalization can significantly alter the need for services, such as specialist care, school, and other health care services, compared with before the hospitalization. These specialist physicians and other clinicians should be notified about the child’s hospitalization especially when there is a change in health condition. Children with LTIs who are hospitalized may acquire new services, such as physical, occupational, and speech therapy and other services (see Case example 4), that need to be continued after discharge.
Case Example 4 : A 10-year-old girl was hospitalized for profound myopathy from vitamin deficiency from malabsorption. She was receiving physical therapy 3 times a week during her hospitalization. Outpatient physical therapy was arranged. Because the inpatient and outpatient systems are different, she did not receive physical therapy for 10 days postdischarge. This gap in service was identified during the postdischarge follow-up and the problem was rectified.
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