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The concept of pediatric palliative care should be analyzed to gain a better understanding of how to address the needs of children living with life-threatening illnesses. According to Walker and Avant, this article identifies uses of the concept, defines its critical attributes, describes a model case, describes additional cases, and identifies antecedents, consequences, and empirical referents. The analysis is useful to researchers and clinicians with a focus on pediatric palliative care. Hypotheses can then accurately reflect relationships among variables in the field, and new tools can be developed to determine the presence of pediatric palliative care.
Each year in the United States, more than 50,000 children die and 500,000 cope with life-threatening conditions.1 Although mortality among children has dropped over the past two decades from 85,135 deaths in 1980 to 69,429 deaths in 1990,2 the number of children living with life-threatening conditions remains a significant problem. Leading causes of infant death include congenital defects, prematurity, and sudden infant death syndrome,3 whereas children most often die from trauma and neoplasms.4 Research shows that most children who die were in the hospital at the time of death and were being treated in an intensive care unit.5 Although improvements in child health and the overall delivery of healthcare have decreased mortality rates over the past few decades,2 pediatric palliative care as a holistic approach is needed for chronically ill children over longer periods of time. These trends suggest that children living with life-threatening conditions in need of palliative care are a significant and growing population and a compelling focus of study.
The term "palliative" is derived from "palliate," which means to make a disease or illness less painful without curing it.6 The earliest recording of the word can be traced back to the late 14th century and it originated in Elizabethan and Indo-European traditions.7 The term "palliate" is derived from "pelte," which means to shield. "Shield" avoids the sense of passivity in human action and offers security during risky and uncertain circumstances.
The concept of palliative care originally evolved from the hospice philosophy of meeting gaps in care for seriously ill and dying patients.1 In 1967, Dame Cicely Saunders founded the first modern hospice in the United Kingdom.8 Florence Wald, the Dean of Yale University, invited Saunders to the United States to learn from her experience and founded the first home hospice care program based in New Haven, CT, in 1974.9 At that time, cancer served as the model disease in hospice development and palliative care services.10 During 1975, St. Luke's Hospice in New York was the first hospice in the United States incorporated into an existing medical center. It included inpatient care, home care, clinic care, and bereavement counseling for families.11 In 1982, the first children's hospice opened in England. This was the beginning of the integrated model of pediatric palliative care that continues to the current model.
Until the mid-1980s, "palliative care" was used interchangeably with "hospice care" and was firmly linked to cancer services and the period immediately before death.12 Two factors challenged this: (1) The manner in which Medicare defined hospice care created the perception that hospice care was an alternative and separate service rather than an integral part of healthcare. (2) Emerging healthcare technologies resulted in people living longer with altered illness trajectories. These changes fostered conceptual distinctions between hospice and palliative care services. Palliative care first received its own definition published by the World Health Organization (WHO) in 1990.13
Palliative care is the active total care of patients whose disease is not responsive to curative treatment[horizontal ellipsis].The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of illness, in conjunction with anticancer treatment.(p11)
Palliative care received recognition as a specialty area of care during this time. Professional societies, innovative palliative care programs, and professional publications emerged. In 1995, the National Hospice and Palliative Care Organization14 (NHPCO) developed the first guidelines for palliative care eligibility for select noncancer diagnoses. Most Americans continued to die in hospitals, however, and circumstances surrounding the experience of death remained largely unchanged. The landmark SUPPORT study was prompted by the Robert Wood Johnson Foundation, which aimed to understand the end-of-life (EOL) experiences of seriously ill hospitalized patients. Shortcomings were identified, such as ineffective communication between patients and providers, lack of advanced care planning, and high prevalence of pain in dying patients.15 It was obvious that novel approaches to palliative care were necessary if care for patients with serious illnesses were to be improved.
The work of the Children's Project on Palliative/Hospice Services16 (ChiPPs) began in 1998, involving a 2-day meeting with 30 leaders in the field of pediatric hospice and palliative care. They identified the critical issues facing the field of pediatric palliative care and developed strategies to address those issues.
ChiPPS contributed to the field by developing a detailed description of pediatric palliative care which currently states that
Pediatric palliative care is both a philosophy of care and an organized program for delivering care to children with life-threatening conditions. This care focuses on enhancing quality of life for the child and family, minimizing suffering, optimizing functions, and providing opportunities for personal growth[horizontal ellipsis].Therapies should take a holistic approach, assisting children and families in fulfilling their physical, psychological, social and spiritual goals while remaining sensitive to personal, cultural and religious values, beliefs and practices. Pediatric palliative care affirms life by supporting the child's and family's goals for the future and hopes for cure or life prolongation[horizontal ellipsis].
Currently, a proliferation in hospital-based palliative care programs has emerged, and a national survey of hospitals revealed that 50% of United States hospitals either have a palliative care program or plan to start one.17 In 2000, the American Academy of Pediatrics called for pediatric palliative care services that are currently getting started at a handful of children's hospitals.18 This is a remarkable change, because the first hospital-based palliative care program was started only 5 years ago.19 The first free-standing pediatric hospice in the United States opened in 2004.18 Experts in the field estimate that only about 25 of the nation's more than 250 children's hospitals have significant pediatric palliative care programs, and about 75 to 80 are making noteworthy efforts to start.
The WHO amended the 1990 definition of palliative care in 2002 and currently defines palliative care as an approach to care of seriously ill patients.20
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual[horizontal ellipsis].
Currently, there is no agreement among various disciplines, professions, and lay groups on the definition of palliative care,19 but literature suggests that most entities view palliative care as an integrated type of care aimed at patients with life-threatening illnesses.
The NHPCO14 describes palliative care as
Treatment that enhances comfort and improves quality of an individual's life during the last phase of life[horizontal ellipsis]. The test of palliative care lies in the agreement between the individual, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life[horizontal ellipsis].
The American Academy of Hospice and Palliative Medicine21 defines palliative care as
[horizontal ellipsis]enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care. Palliative care is operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s)[horizontal ellipsis].Palliative care affirms life by supporting the patient and family's goals for the future, including their hopes for cure or life prolongation as well as their hopes for peace and dignity throughout the course of illness, including the dying process and death.
The Center to Advance Palliative Care22 has a broader definition of palliative care.
Palliative care aims to relieve suffering and improve quality of life for patients with advanced illness and their families. Palliative care is provided by an interdisciplinary team and offered in conjunction with all other appropriate forms of treatment[horizontal ellipsis]
The nursing and medical disciplines have also embraced the changing notions of palliative care. Albert et al23 proposed that
"In any terminal disease, palliation becomes a larger part of the care plan as time passes, but there is no point at which only curative care is appropriate and no point at which only palliative care is appropriate[horizontal ellipsis]palliative medicine should not be thought of as a program that only deals with the transition from aggressive treatment to 'care.'"(p322)
Most authors believe that curative and palliative approaches to care often coexist. Selwyn and Arnold24 stated that
"It is a false dichotomy to consider these approaches strictly separate; this separation is implied, for example, in patients' hospital records when progress notes indicate an abrupt shift from 'aggressive' to 'comfort' care, as if to suggest that palliative care cannot be aggressive or that curative care cannot decrease symptom burden."(p901)
Therefore, most contemporary definitions conclude that palliative care is an integrated approach in which medical science and humanism are merged with the goal of providing competent and compassionate care to patients with a life-threatening condition.17 Despite the fact that literature uses a specific definition of palliative care, the reality in clinical practice seems to be lagging behind as various disciplines, professionals, and lay groups use the term "palliative care" interchangeably with "EOL care" and "hospice care."17 This practice introduces a conceptual difficulty in effective and timely implementation of care to patients with life-threatening illnesses and their families. It is important to examine the differences between these related concepts.
Philosophically, the hospice concept is not different from the palliative care concept.17 The current practice of hospice care challenges some central assumptions of palliative care delivery, however. Hospice care is a model for the delivery of palliative care at the end of life that primarily serves administrative, regulatory, and cost-containment interests.25 The long-standing history of hospice care emphasizes a "nothing but palliation" approach and is considered an alternative to curative treatment. Consequently, the few people who choose hospice care do so late in the illness course.26 The existing hospice model aims to improve the quality of death and dying process. In contrast, the goal of palliative care is to relieve suffering and maximize a patient's dignity and quality of life and death. Similarly, using the term palliative care synonymously with EOL care or terminal care creates conceptual confusion.17 Contrary to EOL or terminal care, which is initiated when the patient is nearing death, recent evidence suggests palliative care should begin at the time of diagnosis of a potentially life-threatening illness.2 Palliative care is appropriate over the continuum of a progressive, life-threatening illness and may be initiated in conjunction with curative treatment.
Critical attributes are characteristics vital to defining and understanding the concept.27 Six significant attributes emerge from the literature and are critical to defining and understanding pediatric palliative care: (1) total, active, and individualized pediatric patient care, (2) family support, (3) interdisciplinary team approach, (4) effective communication, (5) initiation with life-threatening illness diagnosis, and (6) focus on improving quality of life.
Total, active, and individualized pediatric patient care is critical to the concept of pediatric palliative care. Although management of pain and symptoms is a cornerstone of care for children living with life-threatening illnesses, total patient care warns against reducing suffering to merely pain and symptom management.28 Total patient care implies attending to all dimensions of patients' "pain" and "suffering," which includes physical, psychological, social, and spiritual needs.16 According to Clark and Seymour,12 the key to understanding the concept of palliative care is aligning the notion of "palliative" with the notion of "care." "The concept of 'care' directs attention from paternalism to participation, from linearity to holism, and most important from patient to person."(p81)
Another attribute to pediatric palliative care is family support. The child living with a life-threatening illness and the family are considered units of care.20 Family support becomes increasingly crucial as children progress within the palliative care continuum. Families involved in palliative care encounter concerns such as fear of losing a loved one, fatigue, and anxiety.29 Pediatric palliative care can provide opportunities for patients and family to reconcile conflicts, heal relationships, and provide professional support such as counseling, respite care, and bereavement support.30 A family-centered model of care encourages family participation in a supportive partnership with healthcare providers and facilitates seamless continuity across healthcare services at various stages of the illness trajectory.31
An interdisciplinary team approach is also essential to pediatric palliative care. To achieve the goals of pediatric palliative care, efforts of physicians, nurses, therapists, social workers, clergy, and others must be coordinated.32 Different pediatric palliative care team members bring different perspectives to the patient's experience to successfully achieve the goal of total, patient-centered care.19 When multiple specialties are involved, however, team members may not always be in agreement about goals of care. Consensus among team members is vital to an interdisciplinary team approach.
Effective communication is another critical attribute of pediatric palliative care. Communication among patients, families, and the interdisciplinary team allows for integrated care to work toward addressing issues before they occur through advanced planning.33 Pediatric palliative care requires providers, patients, and their families to engage in open dialogue concerning advanced care, planning, prognosis, and preferred treatment goals.
Pediatric palliative care best begins when a life-threatening illness is diagnosed.20 The diagnosis introduces the potential for death caused by an illness. In contrast to hospice care, which focuses on optimizing comfort near time of death, palliative care ideally begins when the diagnosis is made. The outcome of cure versus death may still be unknown at the time of diagnosis, and curative and comfort goals coexist.
The main goal of palliative care is to improve quality of life.20 According to the American Academy of Pediatrics,34 the aim of palliative care in children is to add life to the child's years, not simply years to the child's life. Although the patient has received a diagnosis of an illness that may potentially cause death, the focus of care is to enhance the quality of life. On the other hand, the aim of hospice is to improve the quality of death for patients and their families.
A model case provides a real life paradigmatic example of the concept and meets the defining attributes of the concept.27 The model case of palliative care is as follows:
Taylor is a 4-year-old child in whom acute myelogenous leukemia (AML) has just been diagnosed. The palliative care coordinator at the children's hospital planned a meeting with Taylor's physicians, nurses, therapist, social worker, and child life specialists to discuss the plan of care to address his physical, psychological, social, and spiritual needs. After reaching team agreement, the team met with Taylor's parents to discuss the overall plan of care and allowed time for them to ask questions and express their concerns. The parents were also referred to a counselor to address their own fears and anxieties related to having a child diagnosed with a life-threatening illness. At the next doctor's visit, Taylor was very scared and brought his teddy bear, Boo-Boo, with him. The doctor listened to Boo-Boo's heart first and then Taylor's, followed by the rest of the exam. Taylor's mom asked the doctor what he thought about the family vacation to Disney World planned for next week, considering Taylor's diagnosis of AML. The doctor said it was fine for Taylor to go because he was currently feeling well and told Taylor to say hi to Mickey Mouse for him while he was there.
This model case included all six of the critical attributes of pediatric palliative care. Total care was provided by addressing physical, psychological, social, and spiritual needs. Family support was provided by the referral of Taylor's parents to a counselor. An interdisciplinary approach was seen with all members of the team meeting together and reaching consensus related to care, and effective communication was apparent through the healthcare team, family, and patient communicating together. Pediatric palliative care was initiated at the time of diagnosis, and the quality of life was enhanced by the doctor encouraging Taylor to continue living the life of a 4-year-old boy and enjoy Disney World.
Additional cases provide examples of "not the concept" and promote further understanding of the concept.27 Examples include borderline, related, contrary, invented, and illegitimate cases. The borderline case contains some, but not all, of the critical attributes of pediatric palliative care. The related case contains a concept similar to pediatric palliative care, but does not have the critical attributes. The contrary case is a clear example of what pediatric palliative care is not, and the case does not contain any of the critical attributes of pediatric palliative care. The invented case takes pediatric palliative care outside its ordinary context and places it in an invented, fictitious one. Finally, the illegitimate case uses the concept of pediatric palliative care improperly and out of context.
Eighteen-year-old Jeremy has just learned that he has a brain tumor. Collaboration immediately begins from his physicians, nurses, therapists, social worker, and local preacher regarding the best care to treat his tumor. The healthcare team continually assesses his physical, psychological, social, and spiritual needs; however, the oncologist and the neurologist slightly disagree about his plan of care. Although Jeremy realizes he could possibly die, chemotherapy and radiation are part of his treatment to try to cure his illness, although this treatment may cause severe side effects. Jeremy's family knows he has a brain tumor but is unaware of his prognosis and is not involved in planning related to Jeremy's care.
This borderline case contains some-but not all-of the critical attributes of palliative care. Total care through an interdisciplinary approach is present, and care begins at time of diagnosis. Team consensus is not present, however, and family support is not provided to Jeremy's family. Communication with them is lacking, and no discussion takes place regarding the side effects from chemotherapy and radiation that may negatively impact Jeremy's quality of life. The borderline case helps clarify the defining attributes of pediatric palliative care.
Marissa, age 7 years, has been battling cancer for 2 years and is currently in the pediatric intensive care unit (PICU). Her parents were told she is not expected to make it through the night. The doctor allows them to enter the PICU and sit by her bedside, although visiting hours are over. Morphine is administered so that she will not be in pain, and the nurse closes the door to give the family privacy. Marissa's mother asks one of the nurses for a CD player so she can play Marissa's favorite song, "Somewhere Over the Rainbow," during her last hours. The nurse finds a CD player and brings it to the room.
This related case presents the concept of EOL care, which is closely related to palliative care, yet does not contain the critical attributes. The focus is on the quality of death, care is initiated near death, and only a few members of the interdisciplinary team are involved. Although alleviation of physical discomfort remains evident, less emphasis is placed on addressing the psychological, social, and spiritual needs of the patient. The aim is to comfort the patient, and no attempt at cure is made. The related case aids in comprehension of how pediatric palliative care fits into the network of related concepts such as EOL care.
A first-time mother is concerned when 1-week-old Mason is very fussy and refuses to breastfeed. The next day she calls her pediatrician, and the nurse advises her to take a rectal temperature. The mother discovers a rectal temperature of 102.7[degrees], and the nurse advises her to take the baby immediately to the emergency room. After a septic work-up, Mason is diagnosed with a urinary tract infection that has spread to his bloodstream. The doctor feels as if strong doses of antibiotics will lead to cure. After several days, however, Mason's condition is worse and he is not responding to treatment; the nurses begin to recognize that end of life is near. The nurses suggest a referral to the pediatric palliative care team at the hospital, but the physicians insist on doing a tracheotomy and putting the baby on a ventilator. The parents have been told that Mason's condition is serious, but the physicians are still working toward cure.
This contrary case is a clear example of what pediatric palliative care is not. Although potential for death is clear, total and individualized care to the patient is inadequate, support to the family is not provided, and an interdisciplinary approach with team agreement is nonexistent. Communication is not effective, pediatric palliative care does not begin, although a life-threatening illness has been diagnosed, and quality of life for Mason is not being enhanced. The contrary case provides information about what pediatric palliative care is by looking at what pediatric palliative care is not.
Once upon a time, 10-year-old Sally lived with her mom, dad, and two brothers and was diagnosed with muscular dystrophy at age 3. She and her family had always been very close, and she loved the friends she had made over the years at her hospital, including her doctors, nurses, and therapists. Nobody had to tell her that she could die, because she already knew. However, the family and medical team were always very open with Sally and included her as a key member of the team. They had weekly interdisciplinary team meetings to ensure consensus about her plan of care and made sure to answer any questions Sally or her family had. She and her family were referred to the pediatric palliative care team at the time of diagnosis, which was great to help mom and dad learn how to better communicate with her and her siblings. Although Sally still hoped to be cured, she was not scared about dying because she knew she would go to Heaven and believed she would see her family again someday. She made a memory book filled with pictures and stories about her favorite times with her family so they would always remember her if she died. Although the illness progression caused her to be in a wheelchair, the team worked with the school so she could make visits to see her friends. In her last days, everyone said goodbye, and she died peacefully at home with her family at her bedside. Many medical team members were present at her funeral, and the family continued to receive palliative care support long after her death. From time to time, the family enjoyed remembering her in special ways, such as looking at the memory book Sally made before she died.
This invented case takes pediatric palliative care out of its ordinary context and places it in an invented, fictitious one. The case was built on each of the critical attributes for pediatric palliative care to demonstrate total care, family support, a team approach, communication, immediate initiation of care, and emphasis on quality of life. The invented case increases understanding of pediatric palliative care by getting a true picture of the critical defining attributes.
A mother cares for her child's upper respiratory infection by administering an over-the-counter decongestant as needed, increasing fluids, and using a humidifier at bedside. This demonstration of pediatric palliative care comforts her child and alleviates symptoms until the illness runs its course and spontaneously resolves.
This case uses the concept improperly by referring to supportive care of a child during an acute viral illness. This increases the understanding of the concept of pediatric palliative care under study by looking at an improper use of the phrase and seeing that the critical attributes do not apply at all when the concept of pediatric palliative care is used improperly.
Antecedents are events that are prerequisite to the occurrence of a concept.27 Historically, cancer and AIDS have been the two antecedents of palliative care.10,35 This trend has completely transformed because palliative care is no longer considered limited to the terminal phase or a particular condition.36 Increased attention has been given to understanding how palliative care may be effective for chronic conditions and severe acute illnesses. Antecedents of pediatric palliative care include acute or chronic, actual or potential life-threatening illness.17
The consequences include events that occur as a result or outcome of the concept.27 The literature demonstrates that pediatric palliative care has implications for patients and families. As described by WHO,20 consequences of palliative care include (1) relief from pain and other distressing symptoms, (2) affirmation of life and regarding dying as a normal process, (3) integration of psychological and spiritual aspects of patient care, (4) support system to help patients live as actively as possible until death, (5) support system to help family cope during the patient's illness and, after the patient's death, helping family with bereavement, (6) patient and family needs addressed through team approach, and (7) enhanced quality of life.
Empirical referents are classes or categories of actual phenomena that by their very existence or presence demonstrate the occurrence of the concept.27 For each critical attribute of pediatric palliative care, an empirical referent is determined. The empirical referents for pediatric palliative care are (1) physical, psychological, social, and spiritual care, (2) family counseling, (3) weekly meetings between doctor, nurse, therapist, social worker, and clergy to discuss and reach team agreement regarding the child's care, (4) open dialogue between provider, child, and family concerning advanced care, (5) referral to pediatric palliative care program at time of diagnosis, and (6) enhanced quality of life.
Specific research instruments or methods used to measure pediatric palliative care are undeveloped. The instruments currently developed that might be used to diagnose the presence of pediatric palliative care are limited to methods that measure single attributes of the concept. For example, measuring physical symptoms is part of measuring total, individualized care for a patient. Pain, a physical symptom, can be measured by asking a patient to rate his or her level of pain on a scale of 1 to 10, implementing a pain intervention, and then reassessing pain. Another example might involve instruments available to measure quality of life, such as the Ferrans and Powers Quality of Life Index.37 No methods are currently used to measure the presence of pediatric palliative care, however. The need for measurement tools and methods to be developed specifically for children and implemented is essential to demonstrate the occurrence of pediatric palliative care.
Understanding the concept of pediatric palliative care is paramount to gaining a clear understanding of the needs of children living with life-threatening illnesses. The uses, critical attributes, cases, antecedents, consequences, and empirical referents of pediatric palliative care provide insight to the internal structure of the care needed by these children. Pediatric palliative care is total care (physical, psychological, social, and spiritual dimensions) for the child and family, is a team approach, uses effective communication, starts at diagnosis, and emphasizes quality of life. "Indeed, optimal, essential, and compassionate care for children living with life-limiting or life-threatening conditions requires more than science."2(pxi) This optimal, essential, and compassionate care for children living with life-threatening illnesses requires pediatric palliative care.
Grateful acknowledgment is made to Dr. Mary Jo Gilmer for her valuable insights into pediatric palliative care and help in preparing the manuscript and to Drs. Lynda LaMontagne and Linda Norman for their contributions to theory and this concept analysis.
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