Comprehensive Pediatric Palliative Care: Definitions, Myths, and Key Practices

What is Pediatric Palliative Care?

A combination of active and compassionate therapies to comfort and support children and families living with a life-threatening or limiting illness.

What is a common myth about Pediatric Palliative Care?

That it means giving up hope or is only for terminally ill children.

What does the WHO define as the goal of palliative care?

To improve the quality of life of patients and their families facing life-threatening illnesses through prevention and relief of suffering.

What are the key components of Pediatric Palliative Care?

Physical, psychological, social, spiritual, and financial support for the child and family.

What is the role of Pediatric Palliative Care in end-of-life care?

To help children and families live well and to assist in a gentle death when the time is certain.

What is a common misconception regarding opioids in palliative care?

That administering opioids causes respiratory depression and quickens death.

What is a significant challenge in Pediatric Palliative Care?

The number of children dying is small, and many have rare conditions specific to pediatrics.

What is the importance of early discussions in Pediatric Palliative Care?

They help children and families understand prognosis and elicit goals of care.

What is the significance of a birth plan in Pediatric Palliative Care?

It outlines medical and non-medical goals, delivery plans, and care options for infants likely not to survive.

What are some conditions that may require Pediatric Palliative Care?

Malignancies, respiratory issues, congenital heart defects, and severe genetic syndromes.

What is the focus of Pediatric Palliative Care?

On living well, not just on dying.

What are some common symptoms managed in Pediatric Palliative Care?

Pain, dyspnea, nausea, vomiting, and agitation.

What does 'continuity of care' mean in the context of Pediatric Palliative Care?

Working with primary physicians and care teams to ensure consistent and comprehensive support.

What is the significance of cultural awareness in Pediatric Palliative Care?

To respect and incorporate the family's cultural beliefs and practices in care decisions.

What is the role of family in Pediatric Palliative Care?

Care is family-centered and child-focused, acknowledging the family's needs and involvement.

What are the goals of care discussions in Pediatric Palliative Care?

To clarify resuscitation guidelines and ethical decisions regarding treatment options.

What is the impact of labeling in Pediatric Palliative Care?

It can foster feelings of isolation and abandonment, making families feel like they are 'giving up.'

What is the importance of pain assessment tools in Pediatric Palliative Care?

To accurately evaluate and manage pain in children with life-threatening illnesses.

What is the significance of bereavement follow-up in Pediatric Palliative Care?

To provide ongoing support to families after the death of a child.

What is the role of primary caregivers in Pediatric Palliative Care?

To maintain positive relationships and provide ongoing comprehensive information to families.

What are some common interventions for infants in Pediatric Palliative Care?

NG/gavage feeding and pain management as needed.

What is the impact of a child's development on Pediatric Palliative Care?

Children are in a process of continuing development, necessitating tailored care approaches.

What does the term 'life-limiting illness' refer to?

Conditions where survival to adulthood is a challenge, such as severe congenital anomalies.

How does Pediatric Palliative Care extend beyond death?

It encompasses support for families during bereavement and after the child's death.

What is the significance of spiritual needs in Pediatric Palliative Care?

To address the spiritual well-being of both the child and the family during serious illness.

What is the role of communication in Pediatric Palliative Care?

To assist families in understanding the prognosis and making informed decisions about care.

What is the definition of pain according to the International Association of the Study of Pain?

An unpleasant sensory and emotional experience associated with actual or potential tissue damage.

What are the components of a comprehensive pediatric assessment?

Physiologic assessment, psychosocial assessment, body image, stress and coping, knowledge, support, and developmental assessment.

What is nociceptive pain?

Pain resulting from damage to underlying soft and bone tissues by disease.

Describe somatic pain.

Well localized pain that can be sharp, throbbing, squeezing, or aching.

What characterizes visceral pain?

Diffuse, poorly localized pain that is dull, crampy, or colicky.

What is neuropathic pain?

Pain arising from injury to the central or peripheral nervous system, characterized by burning, stinging, tingling, or shock-like sensations.

What are common fears parents have regarding opioid use in children?

Fear of giving up, misconceptions about opioids being too strong, fear of side effects, worry about addiction, and cultural or religious beliefs.

What are the key behavioral scales used for assessing pain in children?

CRIES for neonatal post-operative pain, FLACC for ages 2 months to 7 years, Wong-Baker FACES for children over 3-4 years, and numerical rating scales.

What are the common side effects of opioid medications?

Constipation, nausea/vomiting, pruritus, respiratory depression, confusion/hallucinations, myoclonus, and somnolence.

What is the significance of a birth plan in pediatric care?

It outlines resuscitation guidelines, parental wishes regarding interventions, and comfort measures for the newborn.

What is the purpose of community nursing consultations prior to birth?

To prepare for care needs and ensure support for the family after delivery.

What are the considerations for a child with a life-threatening illness regarding treatment options?

Consideration of forgoing life-saving therapy and early involvement of palliative care is crucial.

What does the term 'DNR' stand for in pediatric care?

Do Not Resuscitate.

What is the role of memory creation in end-of-life care?

To help families create lasting memories with their child during the final moments.

What are the goals of care for a child with terminal cancer?

To prioritize comfort, manage symptoms, and ensure quality of life over aggressive treatment.

What is the significance of a tracheostomy decision in pediatric patients?

It involves weighing the benefits of prolonged life against the quality of life and potential suffering.

What are adjuvant medications used in pain management?

Medications like clonidine and bisphosphonates that help enhance pain relief.

What is the importance of hydration in pediatric palliative care?

To manage symptoms like dyspnea and ensure comfort for the patient.

What are the common treatments for nausea and vomiting in pediatric patients?

Medications such as ondansetron, maxeran, and scopolamine patches.

What is the role of palliative care in managing pediatric patients with terminal illnesses?

To provide comprehensive support for the patient and family, focusing on comfort and quality of life.

What is the significance of a subcutaneous line in pediatric palliative care?

It allows for the administration of medications like morphine for symptom management.

What is the impact of family presence during end-of-life care?

It provides emotional support and comfort for both the patient and family members.

What are the signs of respiratory distress in pediatric patients?

Symptoms include labored breathing and cool extremities.

What is the role of a pediatric palliative care nurse specialist?

To coordinate care, provide support, and facilitate communication among the healthcare team and family.

What does the term 'bereavement support' entail in pediatric care?

Providing emotional and psychological support to families after the loss of a child.