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The field of pediatric palliative and hospice medicine describes a care approach that aims to relieve total pain and improve quality of life of both children and their families through team based care.
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Introduction of pediatric palliative care is appropriate and optimal at the time a serious condition presents.
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Total pain encompasses physical, emotional, social, and spiritual pain.
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Medical management of pediatric patients focuses on appropriate pain and symptom using tools validated in the
Pediatric Palliative Care
Section snippets
Key points
Total pain: physical, social, emotional, and spiritual aspects of pain
Patients are more than a medical condition. Entering the medical world often diminishes the individual to their presentation or diagnosis. Palliative care preserves the personhood by recognizing total pain and aggressively treating it. When parents and caregivers have been asked to share their goals for the hospitalization of their child, treatment of pain was second only to accurate diagnosis.2
The experience of physical pain is modified by the social context, emotional impact, and meaning
Physical pain
Physical pain is nociceptive or neuropathic. Nociceptive pain indicates tissue injury or inflammation and is often described as dull or throbbing. It is frequently improved with nonsteroidal anti-inflammatory medications (NSAIDs) and opioids. Neuropathic pain (centrally or peripherally mediated) reflects abnormal excitability and is frequently described as electric, sharp, or shooting. It can persist long after an injury and can be very difficult to treat. Neuropathic pain is often poorly
Emotional pain
When serious or life-changing news is shared, fear, sadness, anger, confusion, and a sense of feeling overwhelmed are common. In the evaluation of a child and family, it is important to screen for anxiety, depression, prior trauma, substance use, and domestic violence. Through understanding the primary caregiver’s and patient’s emotional state, a more supportive plan can be developed for the family that can lessen the burden of serious illness.15
Chronically or terminally ill children present
Spiritual pain
Spirituality is essential to children and families coping with serious illness.24 To understand patients’/families’ perception of illnesses and treatment, the meaning they assign to the relationship between themselves and a greater power must be appreciated. Spirituality and religiosity are distinct entities. A religion is an organized group that agrees to general tenants, whereas the meaning found in the practice might be described as spirituality. Spirituality encompasses both how humans
Social pain
The child’s experience of pain and illness is informed by the society in which the child lives, which starts with the family or home in which the child lives. Establishing preferred language and personal pronouns at the start of an encounter is essential. The use of interpreter services is essential if the provider does not speak the preferred language of the patient. Gender identity is best asked directly by asking about preferred personal pronouns (eg, he/him, she/her, they/them) directly. A
Goals of care
Families enter the health care system at different points in the diagnostic and therapeutic continuum. This may be at a time of diagnostic uncertainty, such as fetal consults for suspected cardiac defects or inherited life-threatening illnesses. They may have received a diagnosis for which the prognosis is uncertain, as in the case of children who are awaiting solid organ transplants, many oncologic diagnoses, cardiac anomalies, and immunologic deficiencies, such as human immunodeficiency
End-of-life care
Childhood mortality has remained stable for the past 50 years, with most childhood deaths occurring in those younger than 1 year. Hospital-based deaths remain the most common, with nearly three-quarters occurring in an ICU.33 The primary manner of death has become the withdrawal of life-sustaining technology.34 Children in the United States die in far fewer numbers in the emergency department, operating room, inpatient ward, hospice center, and at home. In any setting, the primary goal is to
Concurrent care and hospice
Hospice is a philosophy in which care focuses on the quality of a person’s life and the person’s comfort, independent of the length of life. Hospice care is provided by multidisciplinary teams whose care is often centered in the child’s home. They provide an extra layer of support for persons for whom death can be expected within the next 6 months if the disease runs its normal course. Children (those younger than 21 years) are eligible to receive the support of hospice services while pursuing
The dying child
Cognitive development plays a role in a child’s understanding of death. At a young age, death may be viewed as temporary and associated with old age. As children get older they develop magical thinking and may believe that death is their fault. By age 7, most children understand that death is irreversible and they become interested in talking about death. As children become older they also consider the effect that death has on the people around them. Children with terminal illness often are
Bereavement
The death of a child has a profound impact on the entire family. The parent-child relationship is unique, and a child’s death evokes feelings of inadequacy and failure in addition to the typical emotional responses of anger, anxiety, sadness, loneliness, and fear. Grandparents suffer their own loss and grieve for the loss that their child is suffering as well. Siblings experience a loss of their sibling, a loss of the family unit, and a loss of the caregivers to the grief process.
Families of
Summary
Caring for children and their families facing serious illness requires a team approach. Providing attention to emotional, physical, social, and spiritual pain will lessen the burden of suffering. When caring for children, you are caring for the future hopes of an entire family, and when a child dies everyone is impacted uniquely. Advocating for early involvement with palliative care is always appropriate to ensure that each child has the chance to live their best day.
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Cited by (15)
End of Life in Pediatrics: The “Relief” of Poetry on Pain by Reaching Children's Spirituality
2023, Journal of Pain and Symptom ManagementCitation Excerpt :Pediatric palliative care represents a field of medicine aimed to relieve pain and its associated disturbing symptoms and to improve the wellbeing of children moving towards the end of their lives.1 Multidisciplinary teams dedicated to this kind of patients often are composed of medical providers, social workers, chaplains, child life specialists, music therapists, art therapists, and psychologists.2 Childhood mortality has remained stable in the last 50 years, and it usually occurs within the first year of age and during hospitalisation, a difficult environment that may even worsen the capability of children and their parents to cope with a terminal condition.3,4
Descriptive analysis of palliative sedation in a pediatric palliative care unit
2022, Anales de PediatriaClinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients
2021, Journal of Pain and Symptom ManagementCitation Excerpt :Clinicians in this study also highlighted multiple factors that contribute to a patient or family readiness to hear prognosis and suggested that learning about family preferences for receiving information, and the patient and family's unique context, builds rapport and fosters trust.7 Additionally, as has been previously described, palliative care and child life specialists, as well as social workers and chaplains, can serve as liaisons for inclusion of children and AYAs, to enhance understanding of cultural differences and family participation.28,29 The literature suggests that ACP guides or worksheets are helpful communication tools between the medical team and surrogate decision makers,30-33 and a recent review28 suggests they may mitigate discordance between parents and clinicians.
Pediatric Death and Family Organ Donation: Bereavement Support Services in One Pediatric Health System
2024, Journal of Patient ExperienceExploring critical factors in pediatric palliative care in Latin America: A scoping review
2024, Global Public Health
Disclosure Statement: The authors have nothing to disclose.