4 Settings of Care

Moshe Cohn, Emily Johnston, and Julia McBee

Introduction

This chapter explores the settings in which children with serious, life-limiting conditions and their families receive palliative and end-of-life care. At varying times in the illness trajectory, patients may be treated at different sites such as acute care hospitals, home care facilities and agencies, and chronic care facilities, with different teams of clinicians in each setting. Care also extends to hospice, schools, and other community venues where the children continue to live their lives. The concept of medical home, as described by the American Academy of Pediatrics (AAP), has particular relevance for these children. The aim of a medical home is to support the needs of children through collaboration among families, clinicians, and community providers, extending “beyond the four walls of clinical practice.”¹ Pediatric palliative care (PPC) clinicians strive daily to achieve this aim for the most complex and seriously ill children, wherever they are located. This requires varied roles by a large team capable of providing both primary and specialty palliative care. However, roles and team members involved varies between sites (and programs) as listed in Table 4.1. Successful integration of palliative care and hospice care teams across all settings in the continuum of care is in keeping with the Core Commitments set out by the AAP and the National Hospice and Palliative Care Organization (NHPCO).^2,3 This integration of palliative care across settings can have tremendous impact on children and their families, as highlighted in one family’s experience with PPC (see family reflection).

• Epidemiological factors in children receiving palliative and end-of-life care services related to where they live and die

• Inpatient settings: the general pediatrics ward, intensive care units, and the emergency department. Community settings: home hospice, long-term care facilities, free-standing palliative and respite facilities, school, outpatient clinic, and telehealth.

PPC takes on many forms, locations, and patients. While the landscape of life-threatening illness has spread beyond oncology, trauma, and perinatal events, the commitments of PPC remain firm. Along with a growing population of children with complex chronic conditions (CCCs) comes a growing call for a palliative approach to their care from the time of diagnosis.³ However, deciding who should receive specialty versus primary palliative and end-of-life care and when and where it should happen is challenging. Children receiving palliative care live far longer than their adult counterparts.⁴ Unfortunately, despite tremendous medical and surgical advances, some children die from serious illness. End-of-life care is therefore an essential aspect of both primary and specialty PPC. In order to understand where children are receiving palliative care we need to know where children with complex, chronic, and life-threatening illnesses are living and where children are dying.

Where Children with Complex Chronic Conditions Are Living

Children with CCCs spend a significant amount of time in the hospital. According to one report, these children spend an average of 27 days in the hospital in their last year of life, with 7 of those days in the intensive care unit.⁵ On the other hand, they are spending 338 days, or 48 weeks, out of the hospital, during that same year. Additionally, children with CCCs are at high risk for readmission to the hospital.⁶ Therefore, out-of-hospital care, or community-based care that incorporates palliative care is essential for children with CCCs to (1) ensure their medical needs are being met and (2) try to prevent admissions. In the community, these children will be spending time at home, in clinics, in schools, and in care facilities—all of which provide opportunities for delivery of PPC.

Where Children Are Dying

More than 60% of children with CCCs die in the hospital,^7,8,9 with the majority of those deaths occurring in the intensive care unit (ICU).^8,10 Other locations of death include the emergency room or out in the field—typically after an acute event or severe trauma. Hospital length of stay is variable: while some children are hospitalized for just a few days before death, there are many who die after prolonged admissions lasting weeks or even months.¹¹ Although more children with a CCC die in the hospital than at home, and the majority of those hospital deaths occur in the ICU, the distribution varies significantly depending on admitting diagnosis, underlying condition, and number of existing CCCs.^5,8,9 In the early 2000s, there was a slight trend toward death at home for children with CCCs,⁷ but in-hospital death remains more common. Given that most pediatric deaths occur in the hospital, the emergency department, and in the field, hospice services are uncommon in pediatrics: only 26% of children who died and were insured by Medicaid ever accessed hospice or home health services.¹²

Pediatric Palliative Care in the Inpatient Setting

Due to advances in medical technology, children with CCCs are living for longer periods of time.¹³ The life-sustaining devices on which they depend increases the educational and daily care burden on parents and caregivers, complicating discharge processes, and may be a significant factor in prolonged hospitalizations. In the past, a prolonged admission was defined as greater than 1 week. However, over the past decade this has changed to time measured in months and sometimes years.¹⁴ These children are in effect living in the hospital for protracted periods of time. In the inpatient setting, children with CCCs will receive services from a multitude of subspecialists and interdisciplinary professionals including the PPC team.¹⁵ According to the 2011 prospective cohort study of children cared for by six hospital-based PPC teams in the United States and Canada, the inpatient PPC team was most commonly consulted for patients with genetic/congenital conditions (40.8%), neuromuscular disorders (39.2%), oncologic diagnoses (19.8%), respiratory disorders (12.8%), gastrointestinal conditions (10.7%), cardiovascular conditions (8.3%), metabolic disorders (7.2%), renal diseases (2.7%), and immunologic conditions (2.6%).⁴ Children from this cohort often required at least one type of assistive medical device, most commonly a feeding tube (68.2%) followed by a central venous catheter (22.3%), tracheostomy (10.1%), and 18% requiring assisted respiration with NIPPV.⁴

What Are Their Symptoms?

Children with CCCs experience a high symptom burden throughout their disease trajectory, and management of their constellation of symptoms is a growing area of clinical research. On the ward the PPC team should take an active role in identifying and treating symptoms, which may be refractory to standard medical therapies. Children with CCCs, especially those with severe neurological impairment, may suffer from symptoms which are commonly underrecognized and undertreated, such as pain, disordered sleep, and feeding intolerance.¹⁶ Among pediatric oncology patients, the involvement of a PPC team has been associated with parental perception of a decrease in distressing symptoms, such as pain, dyspnea, and anxiety, especially at the end of life, a time when overall symptom burden is likely to intensify.¹⁷ Symptoms can be difficult to manage on the ward, sometimes due to institutional policies regarding opioid administration and use of adjuvant medication, as well as the level of monitoring available. This may be true especially for patients without the documentation of an advance directive. It is not uncommon for children to require ICU-level care for improved symptom management, especially during end-of-life care. Policies regarding palliative sedation, use of patient-controlled analgesia (PCA), and other related issues vary significantly between hospitals. The PPC team is uniquely situated to navigate these policies to ensure seamless care across hospital units and advocate for change if the local policies do not reflect best practices.

Do They Survive? Are They Receiving Palliative Care?

Unlike the adult population, children receiving PPC live for more than a year after the initial inpatient palliative care consultation.⁴ PPC involvement and team composition differ throughout children’s hospitals across the United States, as demonstrated in a 2013 study.¹⁸ Approximately 50% of hospitals surveyed reported having a PPC team.¹⁸ Staff composition of the PPC teams typically includes a physician, nurse practitioner or other advanced practice provider, and a social worker. Psychologists, child life specialists, and chaplains may also be dedicated members of the interdisciplinary PPC team. The budgetary commitment to each of these disciplines, as a percentage of a full-time equivalent (FTE) is highly variable.¹⁸ Of note, while the Joint Commission certifies palliative care programs at the institutional level, it is currently developing distinct regulations for pediatric programs, which could lead to standardization of PPC team composition and services.

PPC consultations in the hospital were most often for assistance with symptom management, followed by facilitating communication, aid in decision-making and discharge planning, and, less often, discussions regarding resuscitation status.⁶ It should not be overlooked that specialty palliative care clinicians are not the only providers delivering PPC in the inpatient setting. Long before the initial PPC consultation is placed, hospitalists, bedside nurses, social workers, hematologists, and oncologists, among other specialists, such as mental health professionals, often employ primary palliative care skills when caring for children with CCCs. On the ward, the PPC team works alongside the primary clinical team to establish a lasting rapport with patients and families and provide goal-concordant care. The involvement of the PPC team is often longitudinal as the team follows the child and family through lengthy hospital stays and transitions across care settings.

Challenges and Strategies for Delivering Palliative Care on the Hospital Floor

There are numerous hospital teams that will consult PPC, which presents many challenges for PPC teams. First, many team will introduce the idea of PPC prior to the team’s arrival, which will vary considerably from team to team. PPC may be introduced as the end-of-life team, people to help with symptom management, or as an extra layer of support for families. Second, some teams will only want the PPC team to address the initial consult question, whereas others are happy to have the team explore other issues as they arrive. Third, each team in the hospital may have different level of social work, chaplain, psychology, and child life support, which may affect how the PPC teams plan is best enacted. Fourth, some teams will provide regular medical updates to the PPC and others will not. Finally, some teams will enact all of the PPC’s teams recommendations and others will not. Essential to addressing many of these issues is clear communication with the primary team—from asking them what the family understands about PPC to exactly what the team wants out of the PPC consult to regularly touching base with the team about patient updates.

In most US hospitals, children with (or at-risk for developing) acute life-threatening illness are cared for in a single pediatric intensive care unit (PICU). Larger children’s hospitals have specialized ICUs for children with critical cardiac or neurologic illness, analogous to similar units for adult patients. Children in the PICU typically suffer from failure of one or more organ or homeostatic systems, with a wide spectrum of presentations and acuity. Tertiary- and quaternary-care PICUs must therefore provide a range of medical care, from short-term postoperative stabilization to multisystem trauma, as well as mechanical organ support, such as continuous renal replacement therapy and extracorporeal membrane oxygenation (ECMO).¹⁹

An increasing percentage of PICU admissions is comprised of children with CCCs, many of whom develop “chronic critical illness,” are assisted by medical technology, and experience prolonged ICU stays.^20,21 These children often have neurologic impairment resulting from hypoxic-ischemic injury in the perinatal and/or neonatal periods, trauma, and congenital/genetic disorders.

Given the dearth of inpatient hospice facilities for children, the PICU may serve as a surrogate “hospice” in caring for children at the end of life, although this varies significantly by underlying diagnosis. The availability of an inpatient PPC team is recommended for a PICU to provide high-quality end-of-life care.¹⁹

What Are Their Symptoms?

As varied as the ages, diagnoses, and prognoses are in the PICU, so are the constellation of symptomatologies. The full gamut of symptom categories typically treated by a PPC team are encountered in the PICU: pain, psychiatric, gastrointestinal, neurologic, and respiratory. Specific management of these symptoms and symptom categories is discussed in Section III of this book. Children with CCC are more likely to have a higher overall symptom burden—in particular, acute-on-chronic pain, as well as gastrointestinal symptoms due to exacerbated dysfunction in the setting of critical illness. Acute delirium is prevalent in more than 25% of PICU patients in some studies and is likely underrecognized and poorly managed; symptoms of delirium, such as hallucination and catatonia, are quite distressing to both children and their families.^22,23 Along with delirium, disordered sleep is a particularly burdensome symptom in the pediatric setting, and both are amplified in the PICU by the associated and inconsistent use of sedatives, analgesics, and anxiolytics.²⁴

For children receiving palliative care, the concept of a “total symptom” (such as total pain or total dyspnea) takes on unique characteristics in pediatrics and is amplified further in the PICU. In children with intact cognitive function, discomfort in any category may be exacerbated by exposure to their parents’ emotions of anxiety, sadness, and fear.

Do They Survive?

The overall mortality in PICUs has declined steadily in recent decades, although this varies by admitting diagnosis.^25,26 Mortality risk prediction in the PICU is a relatively young science, with several models being studied and refined.^27,28 While mortality may be strongly predicted for patients admitted with severe, multisystem trauma, such that trauma-related deaths would be expected to occur in the PICU or emergency department, this is not the case for surgical, oncologic, and other serious illnesses. Moreover, among children receiving palliative care services, those with a terminal prognosis whose death is not expected during a particular hospital stay may nevertheless become overwhelmed by an acute and irreversible clinical decline. Parent and child preference for a particular location for end-of-life care is being recognized as a potential factor in where children die.²⁹ At the same time, a 2013 study found that PPC involvement reduced deaths in the PICU by 25%.³⁰ In contradistinction to adults, it cannot be assumed that dying at home is the preferred option for most pediatric patients.³¹

Are They Receiving Palliative Care?

According to CAPC National Registry data, more than 26% of PPC referrals come from the PICU. If the neonatal ICU (NICU) is included in the tally, the total is more than 50%.³² However, at present, it is unknown how many PICU patients are seen by palliative care specialists. This is an area of much needed research, but there is little, if any published data. An important area of ongoing research is how to best identify children who would benefit from a palliative care consult and, of those, whether or not they were seen by a PPC team.³¹

What Does Palliative Care Look Like in the PICU?

The limited data from the National Registry suggests that the PICU is a location where PPC services are highly utilized. The involvement of the pediatric intensivist is a major factor that differentiates palliative care in the PICU from the hospital ward. While hospitalist pediatricians may have some education or experience with providing primary palliative care and basic medical decision-making, children with life-limiting illness or CCCs admitted to the general pediatrics ward are often followed closely by the relevant “primary” subspecialty, such as oncology, neurology, or nephrology. Such subspecialists are assumed to be in the best position to prognosticate and assist with medical decisions for their patients. In contrast, children with critical illness require an additional layer of clinical expertise.¹⁹ Pediatric intensivists are trained to take a more clinically “holistic” approach to prognostication, in the sense that all organ systems are considered in contributing to the assessment of the ultimate outcome for the patient.

The pediatric intensivist may thus play the role of “gatekeeper” to life-sustaining, life-prolonging, or even heroic life-saving measures. The intensivist is a key participant in discussions regarding resuscitation, dialysis, or ECMO, as well as palliative extubation and limiting artificial nutrition and hydration. At the same time, involvement of a PPC team appears to be a factor in whether invasive interventions are utilized, especially at the end of life.³⁰ Perimortem decision-making such as determination of death by neurologic criteria, autopsy, and organ or tissue donation frequently involve intensivists as well.³³

Urgency of care is an additional characteristic of PPC in the PICU setting. As critically ill patients are at higher risk for sudden or acute decline, the availability of an on-call PPC team is crucial to providing timely PPC services and should include social workers, child-life specialists, chaplains, and mental health professionals. In the PICU, members of the interdisciplinary PPC team provide a more “intense” level of service than they do elsewhere. For example, a dying child may be attended by a large family group, including siblings and grandparents. Emotions and stress levels are heightened among family and clinical staff. The presence of social workers and other psychosocial professionals, palliative care nurses, and child-life specialists is vital to facilitating communication, privacy, respite, and bereavement in this scenario.

Improving the quality of palliative care in the PICU has become a major focus of the Society for Critical Care Medicine, especially around end-of-life care.³⁴ In several published reports between 2010 and 2016, the Improving Palliative Care in the ICU (IPAL-ICU) Project describes several levels of palliative care education and provision in the PICU.^35,36,37 Models of care delivery, such as consultative and integrated models, are currently being studied,^38,39,40 and clinician education and resilience support have been identified as key components of quality care.⁴¹ A recent qualitative analysis of speech used by pediatric intensivists and palliative clinicians suggests that the addition of a palliative care team to family meetings may improve communication with families.^42,43 Standardization of family meetings and decreasing PICU readmissions are stated goals of a recent program of the American Academy of Pediatrics, partnering PPC and intensive care clincians.⁴⁴ The crucial role of palliative care “champion” is most often played by the PICU nurse, who serves as the daily liaison between the child, the family, and all other clinical and nonclinical team members. The model of a palliative care “champion” may also be formalized in an effort to enhance quality of palliative care provision in the PICU.⁴⁵

Challenges and Strategies for Delivering Palliative Care in the Pediatric Intensive Care Unit

In addition to the challenges of working with diverse teams on the floor, PPC teams in PICU face the additional challenges of working with families during an extremely stressful time. During PICU admissions, families may or may not be receptive to additional team involvement and may or may not have the emotional bandwidth to consider critical decisions that need to be made. Therefore, when possible, it can be beneficial to have someone familiar with the family introduce the PPC team, work with the family to identify the best time for discussions with PPC, and include the child and families’ key support people when possible (these can be family members or people such as their primary oncologist or social worker). Finally, as mentioned earlier, not all PICU teams are equally receptive to PPC. Therefore, working to develop a PICU “champion” can be beneficial to all involved.

The Neonatal Intensive Care Unit

Who Is Cared for in the NICU?

There has been an increased admission rate to high-acuity NICUs in the past two decades, for reasons that are unclear.⁴⁶ Hospital policies vary about whether only newborns are admitted to the NICU or if neonates, once discharged, are “readmitted” to the NICU rather than the PICU. Regardless, NICU admissions include preterm and term infants requiring ICU-level care. As of 2012, 77.9 neonates out of every 1,000 live births were admitted to the NICU.⁴⁷ Preterm infants born at less than 31 weeks’ gestation make up only 1.5% of the admissions, with up to 90.4% of NICU admissions having been born full-term.⁴⁷ Full-term infants in the NICU suffer from a variety of conditions, including respiratory failure, pulmonary hypertension, congenital anomalies, birth trauma, and infection.⁴⁶ The length of stay in the NICU can vary, from less than 1 day for certain conditions to an average of 43 days for babies weighing less than 1,500 g at birth.⁴⁸

What Are Their Symptoms?

Neonates regularly undergo painful procedures, such as IV catheter placement and frequent blood draws, along with major and minor surgeries. Evaluating the pain elicited from these procedures is challenging due to gestational age-related differences in pain physiology. Pain responses can be atypical, altered, or abnormal—phenomena such as hyperalgesia and neuropathic pain are not uncommon. Babies admitted to the NICU frequently require tube feedings and invasive respiratory support, which are nonphysiologic, and both are associated with distress. Environmental stimuli such as excessive ambient noise are particularly noxious to neonates, as enclosed isolettes amplify decibel levels reaching premature ears. An extensive discussion of these symptoms can be found in Chapter 28 of this book. Palliative care can not only be critical in managing these symptoms, but there is also pressing need for PPC services for parents of babies in the NICU. In addition to the challenges faced by all parents in the intensive care setting, those in the NICU face the added stress of early separation from their newborn child during a period critical for early attachment and parent–child bonding, and when mothers are often exhausted from childbirth.⁴⁹

Do They Survive?

The majority of neonates admitted to the NICU survive. At the same time, the majority of childhood deaths occur in the first year after birth, and particularly in the first 30 days of life.⁵⁰ Therefore, the NICU is a common location for death to occur in the inpatient setting.⁵¹

Are They Receiving Palliative Care?

There is a growing specialty of neonatal palliative care, which can even begin when diagnosis of a life-threatening condition is made during a prenatal visit.⁵² Many programs have been developed to encourage primary and specialty PPC in the NICU for terminally and non–terminally ill patients. Many surviving neonates face a variety of long-term medical challenges including developmental delays, the need for supplemental oxygen, and the inability to feed by mouth. Decision-making around surgeries and the use of medical technology, such as tracheostomies and gastrostomies, may present an opportunity for the PPC team to become involved. Once a relationship is established, the PPC team can then support these neonates and their parents in the transition from hospital to home and can facilitate continuity between the NICU and outpatient care.

Challenges and Strategies for Delivering Palliative Care in the NICU

The PPC team in the NICU faces the same challenges mentioned on the floor and in the PICU. However, these challenges are compounded by recent childbirth and long admissions. Parents, particularly mothers after complicated pregnancies and deliveries, may not be available at the bedside. Other parents will have to decide if they want to be present at the bedside during the NICU stay or save their parental leave for when their child is discharged home. Therefore, working with the family to find appropriate times to talk (potentially utilizing telehealth or visits to the mother’s hospital room) is essential.

Palliative Transport Home for Compassionate Extubation

There are children intubated in the NICU and PICU who would only survive a short period after extubation. Some families will chose to withdraw care and have their child pass away in the hospital. However, other families want their child to die at home—including parents whose neonate has spent their entire life in the hospital. Some facilities are equipped to provide palliative transport home, which is defined as “the medical transport to home or inpatient hospice of children with levels of life-sustaining support demanding a critical care team, with the expectation of death within minutes to days after the cessation of that support.”⁵³ Such transport requires active participation by the ambulance company, nurses, respiratory therapy, and the PPC team. When families have chosen palliative transport home, they have reported that the ride home is stressful but that they were extremely grateful for the opportunity for their child to die at home.⁵³ Therefore, when available, palliative transport home may be a unique location for provision of PPC.

Emergency Department

PPC has two potential areas of integration in the emergency department setting. Children with CCCs who are already followed by palliative care may present to the emergency department.⁵⁴ They constitute a unique group that may benefit from the availability PPC in the emergency department, which can serve as a point of contact and continuity. There is evidence that children with a higher number of CCCs have a greater likelihood of visiting the emergency department but without requiring inpatient admission.⁵⁵ As outpatient pediatric palliative programs are not ubiquitous, the emergency department may be an opportune setting for a PPC team to connect with patients with whom they have a long-standing relationship. A second group of patients consists of previously healthy children who experience sudden life-threatening events such as drowning, severe trauma, sudden infant death syndrome (SIDS), or sudden unexpected childhood death (SUCD). Some of these children will die in the emergency room while others will begin a long medical journey—and both may benefit from palliative care involvement. Unintentional injury remains the leading cause of mortality among children age 1–19 years, accounting for 44% of deaths.^39,40,41 From an epidemiologic perspective, the dominant trajectory of childhood death is sudden and, therefore, unexpected.^26,39,41 An estimated 20% of childhood deaths actually occur in the emergency medical services (EMS) environment.^42,43,44

These two groups have vastly different needs and require different approaches to provide them with the PPC services they could benefit from in the emergency room. For children with CCCs, establishing new relationships with on-call palliative care providers in the emergency setting is not ideal. Therefore, if there are palliative care needs in the emergency setting, the emergency room team might reach out to the primary palliative care clinician already known to the family, if one exists. For those children who present in extremis following a trauma, a PPC clinician will not always be available. Therefore, it is essential that (1) emergency room physicians receive primary palliative care training and (2) chaplains, social workers, and other supportive care staff are available.⁵⁶

Pediatric Palliative Care in the Community

Home

Living at Home

There is a large and growing population of children with CCCs living at home and requiring substantial caregiver support. A study of caregivers of children with special healthcare needs showed the average caregiver spent 11–20 hours per week providing direct care for their children and an additional 2 hours per week of care coordination.⁵⁷ Not surprisingly, 57% of these families face financial difficulties because of their child’s health.⁵⁸ It is evident that these children and their families could benefit greatly from home-based palliative care or hospice. However, the life expectancy requirement for hospice enrollment, which is less than 6 months, limits which children can enroll in hospice. Some states in the US, such as California, have adopted hospice waiver programs to allow children with life expectancies greater than 6 months to receive hospice services. Other states, such as Massachusetts, have developed statewide programs to meet the PPC needs of children living at home. The Massachusetts program was developed in 2006 to provide statewide community-based palliative care.⁵⁹ As of 2010, they were caring for more than 200 children annually, and the most common services provided were psychosocial and case management.⁵⁹ For states without such programs, families frequently have to work with multiple agencies to get their home care needs met—from durable medical equipment to home nursing to transportation to appointments. Unfortunately, these agencies do not always have interagency collaborations, creating additional work for families and case managers.^60,61 The type of home care that is more commonly available to children is home nursing, but there is a significant shortage of providers for these children.⁶² Additionally, there are disparities in access to these critically important resources, with minorities, those from poorer areas, and children with behavioral problems having the most difficulties.⁶³ These factors contribute to delays in discharge when children with CCCs are admitted and to the high care burden at home, and they highlight the critical role of case managers in maximizing home resources and coordinating delivery of needed services.

Home Hospice

While the majority of children with CCCs die in the hospital, a growing minority dies at home and would derive significant benefit from hospice services. Hospice is intended to provide high-quality medical and psychosocial care for people with a life expectancy of less than 6 months. Traditionally, the hospice benefit provides for care related to end-of-life needs, including medications, durable medical equipment, nursing, and social work; curative or disease-directed treatment of the underlying disease is not typically covered. Hospice agencies will receive a fixed amount to cover all expenses for each day of hospice-related services provided.

Although some adult hospices and programs have an interest and willingness to care for pediatric patients, adult-focused programs and staff may be unprepared for the occasional pediatric referral and lack connections to pediatric-trained clinicians to assist them in providing safe, effective, and age-appropriate hospice care.^64,65 Adult-focused hospice agencies vary in the amount of pediatric experience among staff. The 2007 survey of hospice agencies by the National Hospice and Palliative Care Organization showed that 78% of hospice agencies report caring for children, but the majority see fewer than 10 children per year.⁶⁴ Given this low volume it is not surprising that many hospice agencies lack personnel trained to care for children: only 14% of hospice agencies report formal pediatric services, and only 37% report formal training in pediatric hospice care.⁶⁴ The Concurrent Care Provision of the Affordable Care Act allows children with Medicaid coverage to receive disease-directed therapies while enrolled in hospice. This scenario may be confusing to hospice agencies that are most familiar with adult patients, for whom curative treatment is not a covered benefit.

Clinician attitudes toward and education in palliative and hospice care create a ground-level barrier to children receiving these services. Physicians and other healthcare workers in the community may be unaware of or uncomfortable with the specialized services that pediatric hospice and palliative care programs have to offer and may be reluctant to make referrals.^55,56 Inadequate formal training in the fundamentals of PPC^57,58,59,60 can in turn have clinical ramifications, in that the children may not receive services that would otherwise enhance their quality of life even if they are enrolled in hospice. One such consequence is that some families report negative experiences with hospice. In a study of 12 parents of children with cancer who enrolled in hospice, 5 out of 12 (42%) revoked hospice because of poor symptom management and another child died in uncontrollable pain because the parents did not realize they could return to the hospital.⁶⁶ This is consistent with findings from a qualitative study about palliative care experiences that included 17 children who died at home with a variety of conditions, albeit predominately cancer.⁶⁷ Parents expressed frustrations with hospice and home health agency scheduling and staffing, particularly staff that explicitly stated they were unprepared to care for children.⁶⁷ With inadequate care at home, many parents wanted services that would have been provided in the hospital but were not available to them through hospice.⁶⁷ Another qualitative study of bereaved parents of children with cancer found similar frustrations with staffing that led to inadequate symptom management.⁶⁸ Others reported feeling abandoned by their pediatric oncology team when they enrolled in hospice.⁶⁸ These problems with hospice and home care are supported by a study of 95 patients with cancer who enrolled in hospice at a single institution: 41% of families withdrew from hospice before the child died.⁶⁹ It can be beneficial for families to have their primary teams continue to follow them while they are on hospice to ensure that their needs are being met, to remind them that they are always welcome to return to their hospital if their needs cannot be met at home, and to ensure continuity of care if families choose to return to the hospital.

Home Away from Home: A Clinical Vignette

At large academic institutions with multiple subspecialists, it is not uncommon to find children who have traveled with their families from across the country and around the world for second opinions, novel surgical procedures, and clinical trials. These children often need a “home away from home,” which may mean living in the hospital where they are being treated. This clinical vignette describes the journey of a young woman and her mother who traveled to the United States for a second opinion after receiving a devastating oncologic diagnosis.

Related posts:

Program Development Neurological Symptoms Fatigue Practical Aspects of Palliative Care Communication Advanced Heart Disease Children’s Voices: The Experience of Patients and Their Siblings

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