There are many ways to add to children’s quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.
Key points
- •
There are many ways to add to children’s quality of life within the hospital environment.
- •
Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses.
- •
The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers.
- •
The wealth of human resources and the availability of unique interventions within the inpatient setting facilitate creative ways for improving quality of life and easing distress of hospitalized children and their families.
Case: part 1
Eight year-old Koby was born with hypoplastic left heart syndrome for which he underwent a series of cardiac surgeries beginning shortly after birth. These interventions were done to relieve symptoms from his underlying defect; they were never intended to fix the problem. Immediately following his initial surgery Kobe had a cardiac arrest that resulted in permanent neurologic impairment, including mild global developmental delay, behavioral issues, and a learning disability.
Over the past several years Koby has lived at home, but he has required frequent outpatient visits and admissions. The cardiology team recently shared with Koby’s family that he is now in end-stage heart failure and that only a heart transplant could significantly extend his life expectancy.
Koby has been in hospital for the past month while undergoing transplant assessment and to optimize medical therapy for his heart failure. Staff have noticed changes in his mood and general demeanor; Koby was always outgoing and happy, but he now seems more introverted and quiet.
Case: part 1
Eight year-old Koby was born with hypoplastic left heart syndrome for which he underwent a series of cardiac surgeries beginning shortly after birth. These interventions were done to relieve symptoms from his underlying defect; they were never intended to fix the problem. Immediately following his initial surgery Kobe had a cardiac arrest that resulted in permanent neurologic impairment, including mild global developmental delay, behavioral issues, and a learning disability.
Over the past several years Koby has lived at home, but he has required frequent outpatient visits and admissions. The cardiology team recently shared with Koby’s family that he is now in end-stage heart failure and that only a heart transplant could significantly extend his life expectancy.
Koby has been in hospital for the past month while undergoing transplant assessment and to optimize medical therapy for his heart failure. Staff have noticed changes in his mood and general demeanor; Koby was always outgoing and happy, but he now seems more introverted and quiet.
Maximizing quality of life in the inpatient setting
The primary goal of palliative care is to maximize the quality of life of the child and the family. This is often accomplished in parallel with efforts to prolong life. Despite the centrality of this goal in pediatric palliative care (PPC), few studies have rigorously investigated methods of assessing quality of life or potential interventions to improve it in children with life-threatening illnesses. There is a dearth of research in this area, in part because quality of life is highly individualized and current tools fail to recognize its subjectivity. With this in mind, and absent a universal definition of the term, perhaps the most practical way of understanding and maximizing the quality of life of patients and families is by asking them directly and regularly what would make their lives a little better.
Although any one patient might provide numerous responses to this question at any given moment, ways of improving quality of life can usually be placed into one of 2 categories: things that increase the good and those that decrease the bad. Decreasing the bad in the hospitalized patient usually involves reducing distressing symptoms (primarily addressed later in this article) and, for many, being discharged home. When discharge from hospital is desired by the patient and family, and when the child’s condition and the available community resources offer adequate support, efforts to ensure that the inpatient stay is no longer than absolutely necessary are generally appreciated. Nonetheless, sometimes the right place of care for a child with a life-threatening illness is in the hospital, and during those times clinicians can help maximize quality of life by focusing on increasing the good things each day ( Table 1 ).
| Strategy | Example |
|---|---|
| Create familiar environment | Bring in toys, pictures, mementos, decorations |
| Leverage technology | Video chat, social media, music, video and other multimedia |
| Continue routines | School, tutoring, music lessons |
| Use therapists and specialists | Physiotherapy, occupational therapy, clown, music, massage, child life specialists, art |
| Think broadly | Expressive art, meditation, hypnosis, aroma therapy, Reiki |
| Legacy creation | Photos, hand/foot molds, journaling, blogging |
| Companionship | Family, friends, volunteers, pets |
There are many ways to add to a child’s quality of life within the hospital environment. Simple things like decorating a patient’s room to make it feel more like home can help, and might include having a parent bring a child’s blanket, pillow, or favorite stuffed animal, or putting up posters or artwork in the room. Photographs of family and friends can make a hospital room feel more personal and can become a welcome topic of conversation, and visits from family and friends may also brighten a child’s day. Recent technological advances have resulted in new modalities for hospitalized patients to have virtual visitors: texting, video chatting, blogging, and posting to social media sites, are just a few of the ways that children and parents can stay connected with family and friends.
Finding ways to incorporate a child’s daily routine and normal activities can be helpful. Continuing with school during hospitalization, whenever possible, is another way to bring normalcy to an otherwise abnormal environment. Formal educational services have been shown to improve coping in hospitalized children. Participation in school may be achieved through on-site tutoring or sometimes through videoconferencing with the child’s classroom. When not engaged in other activities, having familiar faces come to visit may be helpful. However, it may not always be possible for someone known to the child to be present, but trained volunteers can offer a welcome distraction while providing welcome respite to families.
Although lacking an extensive body of rigorous data, empirical evidence suggests that a variety of therapists can be instrumental in efforts to improve quality of life in the hospitalized child. Child life specialists, pet therapy, and therapeutic clowns can engage the child and help reduce boredom, provide distraction, and allay anxiety, and also help family members find ways to get involved ( Fig. 1 ). Child life specialists may also arrange special moments: spa days, visits from local celebrities and athletes, screenings of plays and movies, and marking special occasions such as birthdays. Music therapy has been shown to have positive effects such as decreasing various symptoms in children, including pain and anxiety, and increasing their ability to cope with stress. Qualitative and quantitative studies on the effects of music therapy in PPC have shown its ability to improve communication between parent and child. Bereaved parents have also reflected that music therapy helped to form lasting positive memories ( Fig. 2 ). Massage therapy results in modest reductions in pain and a variety of other symptoms in adults receiving palliative care ; it may also reduce pain and induce relaxation in hospitalized children with chronic illness. Although art therapy may also improve quality of life in patients with life-threatening conditions, it can also serve as a tool for hospitalized children to express their thoughts and feelings, which in turn may identify ways to improve overall well-being. Regardless of the evidence to support these and other forms of integrative and expressive therapies, whether or how a particular intervention may benefit an individual child varies. When available, these and other interventions to improve quality of life should be offered, and, if accepted, their effects should be regularly assessed.
Although these and other good experiences in hospital may inadvertently create positive memories for bereaved parents, the hospitalization of a child with a life-threatening condition can be a time for intentional legacy creation as well. Children, like adults, want to be remembered when they die; creating personal messages, art, and other keepsakes for family and friends can help assure a dying child that their memory will live on while providing their loved ones with gifts that will be treasured. Photographs, hand/foot molds and prints, and journaling (written, audio, or video) are just a few examples of activities in which children can engage as inpatients and that many pediatric hospitals support.
Challenges to introducing PPC in the hospital setting
Many children with life-threatening conditions spend long periods in hospital for diagnostic purposes, medical or surgical treatments, or perhaps for end-of-life care. Although increasing efforts are being made to shift the care of children with complex chronic conditions into the home and the community, dedicated pediatric health centers remain a primary setting in which these patients visit their subspecialists, undergo tests and procedures, and ultimately are where patients may feel most comfortable turning for their acute care needs. For this reason, the inpatient setting remains the most common location for PPC introduction. The central role of the hospital for a child with a life-threatening illness makes it an important location for the integration of palliative care services. However, unique challenges exist to integrating palliative care within the pediatric hospital setting (a more thorough discussion regarding factors that affect referral to PPC is provided elsewhere in this issue).
The barriers to PPC on the hospital wards, as with those in other settings, frequently stem from misconceptions about PPC. However, some barriers are intensified by specific characteristics of acute inpatient centers. Although the presence of palliative care services has grown considerably within pediatric hospitals, the overarching goal of inpatient care is to help children to recover from illness. Apart from patient rooms or units designated for palliative care, the ubiquitous glow of vital sign monitors and the overhead buzzers and bells of the hospital environment serve as a reminder that care in the inpatient setting is intended ultimately to fix medical problems or at the least prevent deterioration. Despite endorsements for its early integration by both general pediatric and subspecialty bodies, many health care providers continue to view palliative care as an option reserved only for when all curative therapies have been exhausted. Until it is widely recognized that palliative care and curative care need not be mutually exclusive, the goal of medical care in the inpatient hospital setting may be at odds with palliative care.
Beyond the fix-it mentality that families expect and providers espouse within the pediatric inpatient setting, the nature of the highly subspecialized care that occurs there may also impede palliative care. Most PPC services work in a consultative model : patients are referred to them by other services or clinicians when involving palliative care might be beneficial. Guidelines recently published by the American Academy of Pediatrics recommend that all physicians be able to inform patients and families about PPC. However, many subspecialists, particularly those who do not regularly collaborate with palliative care, may not possess the knowledge and language to adequately convey to families what palliative care involvement might add. If palliative care is perceived by most families as giving up, then it must be introduced by individuals who can confidently dispel these and other myths in order to achieve timely integration. It is paradoxical that the availability of an inpatient PPC service may exacerbate the problem by unintentionally sending the message that palliative care requires the expertise of a subspecialty team. Efforts to promote palliative care as an essential competency for all health care providers caring for children with life-threatening illness remain essential.
Distressing effects of hospitalization on the child and family unit
Several challenging and distressing effects are associated with hospitalization, including sleep, emotional, and behavioral disturbances. Hospitalization often affects the entire family unit as well (symptoms in children receiving palliative care are discussed elsewhere in this issue).
The impact of hospitalization on the emotional well-being of children has long been recognized. More than 60 years ago Moncrieff said, “The emotional needs of the sick child need as much consideration as his food or drug therapy.” More recently, work has been done to determine those factors that place children at greater risk for difficulty coping while in hospital. These include, but are not limited to, age between 0.5 and 4 years, prolonged admission, more severe trauma or illness, length of time since diagnosis, and the child’s previous experience(s) in hospital. Many of these factors can be seen in the PPC population and create difficulties for children merely because they are admitted, regardless of their diagnosis and concurrent symptoms. Two suggested methods to help children cope with hospitalization are preparation techniques and cognitive coping strategies. The preparation techniques include using reading material or videos before procedures and introduction to new areas of the hospital (eg, intensive care unit, operating suite). Cognitive coping strategies, including relaxation, distraction, and cognitive restructuring, may also be helpful in the hospital environment.
However, the effects of prolonged hospitalization are not isolated to the patient: siblings and parents are also affected. Siblings can have feelings of abandonment, guilt, jealousy, confusion, or resentment. Regarding parents, a recent review showed how critical illness (specifically admission to the pediatric intensive care unit [ICU]) affected parents in many ways: physical and emotional fatigue, changed routines, lower quality of life, and increased physical symptoms. Parents also have stress-related symptoms and difficulties with family functioning as long as 6 months after a child’s admission to the ICU. Divorce rates may be increased secondary to stress and prolonged hospitalization; however, studies examining this issue have yielded conflicting results. There is anecdotal evidence that many providers think that stressful situations accentuate preexisting qualities of relationships and do not in themselves increase separation rates.
One of the most important and impaired aspects of daily living in the hospital is sleep. Even in hospitals where private rooms are the norm, constant noise, disturbances (both for necessary and accidental reasons), and the continuous vigilance of nurses and family members can be expected. These factors, among others, create an environment that is not conducive to normal sleep and may exacerbate sleep disturbance and fatigue related to their underlying condition. Physiologic changes caused by sleep disturbance may result in impaired natural host defenses and inhibition of growth hormone secretion. In addition, sleep deficits have behavioral and cognitive effects such as decreased attention and concentration, and increased irritability, depression, and impulsivity. One study even showed that sleep disturbance may lead to increased feelings of depression and hopelessness, which for PPC patients and their families could compound existing hardships. Efforts should be made to reduce nighttime noise and frequency of vital sign monitoring, in addition to restructuring medication schedules in inpatient units. In addition, simple interventions such as decreasing nighttime intravenous fluid rates can decrease wakings and improve sleep in the hospital setting. Individual sleep hygiene tips, such as those published by Seattle Children’s hospital, can also be helpful, even for the hospitalized child ( Table 2 ).
Full access? Get Clinical Tree
