Children have multiple different physiologic and emotional problems related to the diagnosis, treatment, or the process of active dying.
Pain is the primary concern in palliative care, as children experience levels of pain based on previous experience, tissue damage involved, developmental level, and meaning of pain.
Children may not be able to communicate pain or to acknowledge the severity of pain!
The most concerning symptoms for children at the end of life include pain, gastrointestinal problems, and neurologic changes, including seizures and altered mental status.
Ideally, a pediatric palliative care team or service can be used or consulted to assist in determining appropriate care for children who are determined to have a life limiting disease or be at the end of life.
Nociceptive: occurs with activation of primary afferent neurons by a noxious stimulus.
Paresthesia: Abnormal painful numbness, includes prickling, tingling, and increased sensitivity.
Paroxysmal: sudden onset of escalation or recurrence of pain.
Allodynia: pain caused by a stimulus that typically does not produce pain (e.g., light touch).
Central pain: Pain resulting from a lesion or dysfunction in the central nervous system (e.g., poststroke pain).
Dysesthesia: Abnormal sensation that includes painful numbness, burning, tingling, and allodynia.
Neuropathic pain: Pain initiated or caused by a primary lesion or dysfunction in the nervous system.
Always based on the developmental level of child.
Changes in vital signs and behavior are not often apparent in chronic pain as in acute pain.
Young infants and newborns will exhibit crying, stiffening bodies, withdrawing to pain, facial grimacing.
Evaluation of infants and toddlers includes differentiation between true discomfort and stranger anxiety or fear.
Pain scales are helpful for all ages.
Pain is evaluated based on vital signs and patient ratings. Vital signs can be important indicators of pain or increasing pain.
Diagnostic evaluation of other symptoms is typically based on clinical findings, but supported by laboratory studies (e.g., cough → chest radiograph).
The extent of diagnostic testing in palliative care is based on the etiology of the problem and the rationale for the study.
Laboratory studies and radiological imaging are often considered for the purpose of symptom-based management even when a child is actively dying.
Pain relief is essential at the end of life.
TABLE 22.1 Clinical Symptoms and Management Associated with Palliative Care
Related Symptoms or Concerns
Acute or chronic
Types of pain
Evaluation using developmentally appropriate pain scales.
Management based on type and severity of pain.
Evaluation based on severity of symptoms, diagnostic studies, if indicated.
Evaluation of nutritional status.
Evaluation of need for medical therapies.
Management with diet, fluids, or medication.
Altered level of consciousness
Evaluation of clinical status and use of imaging modalities, if indicated.
Supportive treatments or radiation to shrink tumor causing lesions.
Formal evaluation and diagnosis.
Psychological treatment based on diagnosis.
Inadequate pain relief hastens death by increasing physiologic stress.
Management of pain can be through many modalities (e.g., oral, transdermal).
Barriers to pain control exist within health care system and with patients and families.
Use World Health Organization (WHO) pain ladder approach.
Use round-the-clock dosing or long-acting medications, titrate upward slowly, reevaluate frequently.
Start with low-dose, short-acting opioids and titrate to effect.
Use adjuvant pain medications and nonpharmacologic adjunctive therapy.
Initial management may include one or two medications, can combine opioids with nonopioid and adjuvant medications.
Ensure administration schedule is based on the analgesic’s duration of effect.
Use sustained-release opioids for scheduled dosing and immediate-release opioids for rescue or breakthrough dosing.
Avoid meperidine, propoxyphene (Darvon), and the mixed agonist-antagonist opioids (e.g., Stadol, Nubain, Talwin).
Noninvasive routes are preferred. Intravenous (IV) analgesics work well until the pain is controlled. Continuous subcutaneous or IV infusions are indicated when other routes are not practical or effective.
To titrate pain therapy, increase dose by 25% to 50% for moderate pain and 50% to 100% for severe pain. Calculate average dose of breakthrough medication taken per day and add to daily dose.
Breakthrough dosing: Use scheduled dosing for consistent/basal control. Frequent breakthrough dosing equals increased schedule dosing. Oral breakthrough dose is 10% to 20% of the oral 24-hour baseline dose. IV/subcutaneous breakthrough dose is approximately 50% to 100% of the hourly IV/subcutaneous rate.
When changing medication or route of administration, use equalgesic doses.
Manage opioid side effects aggressively. Start stimulant laxative/softener combination with opioids.
Refer Section 14 for more information.
Dyspnea: distressing shortness of breath.
Opioids, diuretics, bronchodilators, benzodiazepines.
Inhaled morphine, furosemide by nebulizer.
Opiates are most commonly used to control pain and dyspnea at the end of life.
Nonpharmacologic: breathing exercises, fan blowing in face, oxygen, limiting energy consumption.
Pharmacologic therapies: steroids, cough suppressants, antibiotics, anticholinergics.
TABLE 22.2 Pain Presentation and Management
Types of Pain
Drugs/Classes of Medications
Constant and well localized.
Nonopioid (e.g., Baclofen).
Injury to sympathetically innervated organs.
Pain is vague in quality.
Deep, dull, aching.
Axial skeleton with thoracic and lumbar spine, most common.
NSAIDs: ketorolac (Toradal) and many others.
Radiation therapy, radionuclides.
Neuropathic Pain/Nerve Damage Dysesthesia
Injury to some element of the nervous system.
Dysesthesia, burning, tingling, numbing, shooting electrical pain.
May require higher doses of opioids.
Anticonvulsants: gabapentin (Neurontin), carbamazepine (Tegretol), clonazepam (Klonopin).
Tricyclic antidepressants: nortriptyline (Pamelor), desipramine (Norpramin).
Atypical antidepressants: duloxetine (Cymbalta), venlafaxine (Effexor).
Topical anesthetic: lidocaine patch 5% (Lidoderm).
Nonpharmacologic therapies: Elevate head of bed, sit upright, ambulation.
Pharmacologic therapies: oxygen, anticholinergics (e.g., atropine, glycopyrrolate, scopalomine).
Nonpharmacologic: chest physiotherapy, suctioning as tolerated, positioning.
Pharmacologic therapies: corticosteroids—also assist in decreasing nausea and improving energy; prokinetics: metoclopramide; dopaminergics, such as haloperidol; progestogens, but take longer to become effective; marijuana.
Nonpharmacologic: Offer small meals, portions, aesthetically pleasing environment and presentation of food; nutritional high-calorie supplements can assist if tolerated.
Pharmacologic therapies: Aggressive therapy is best; stool softener and laxative, osmotic agents such as polyethylene glycol (Miralax), stimulants such as senna and bisacodyl; use treatments together.
Nonpharmacologic: fluids, fruits and fruit juices, fiber; if tolerated, ambulation.
TABLE 22.3 Commonly Used Pain Medications
Morphine sulfate immediate-release—15, 30 mg.
MS Contin -15, 30, 60, 100, 200 mg q 8-12 h.
Morphine sulfate immediate-release solution—2 mg/mL, 4 mg/mL.
Morphine sulfate immediate-release concentrate (Roxanol)—20 mg/mL.
Rectal morphine sulfate (RMS)—5, 10, 20, 30 mg.
Hydromorphone (Dilaudid)—2, 4, 8 mg.
Hydromorphone (Dilaudid)—5 mg/5 mL.
Injection—1, 2, 4 mg/mL.
Dilaudid HP—10 mg/mL.
Hydromorphone (Dilaudid)—3 mg.
Oxy IR—5 mg.
Roxicodone—5, 15, 30 mg.
Oxycodone/acetaminophen (Do not exceed 4,000 mg acetaminophen q 24 h).
Percocet—5/325, 7.5/325, 10/325 mg.
Roxicet—5/325, 5/500 mg.
Oxycontin—10,15, 20, 30, 40, 60, 80 mg.
Roxicodone—1 mg/mL, 20 mg/mL.
Hydrocodone/acetaminophen tablets (Do not exceed 4,000 mg acetaminophen/24 hr).
Lortab—2.5/500, 5/500, 7.5/500, 10/500 mg.
Norco—5/325 mg, 7.5/325 mg, 10/325 mg.
1 mg hydrocodone = 1 mg oral morphine
Transdermal patch (not for post op/acute pain; not for use in opiate-naive patients).
Duragesic—12.5, 25, 50, 75, 100 µg/hr.
100 µg patch q 2-3 days = 66 mg IV morphine every 24 hr or 2.7 mg IV morphine every hour.
Oral lozenge (not for use in opiate-naive patients).
Actiq—200, 400, 600, 800, 1,200, 1,600 µg.
Fentora—100, 200, 400, 600, 800 µg.
(Fentora is 2× strength of Actiq.)
See package insert for conversion.
Equivalency should be individually considered. Long half-life.
Potency, and individual variations in pharmacokinetics.
Nausea and vomiting: Most important initial management is to determine and attempt to treat the cause.
Pharmacologic therapies: antiemetics—ondansetran; steroids—dexamethasone; anticholinergics and prokinetics.
Nonpharmacologic: Offer small meals, portions, aesthetically pleasing environment and presentation of food. (Of the 10 or more recommendations for managing nausea in palliative care, only a few pertain to young children!)
Oral care after each episode of emesis, comfort care with cleanliness, decrease noxious stimuli, avoid aggravating foods.
More common in adolescents and teens.
Often, associated with sedatives and analgesics.
Nonpharmacologic: psychiatric evaluation and pharmacologic/nonpharmacologic therapies per consultant.
Anxiety, depression, insomnia, agitation.
Apprehension, tension, insecurity, and uneasiness; usually without a known specific cause. Children feel their uncertain future.
Some symptoms are related to medications such as stimulants and steroids.
Early diagnosis and treatment are key.
Pharmacologic therapies: selective serotonin reuptake inhibitors (SSRIs), antidepressants, stimulants, benzodiazepines, and haloperidol.
In recent years, more potent agents such as infusion of propofol, ketamine, and dexmedetomidine as well as clonidine delivered enterally or by transdermal patch have been successfully used to treat intractable symptoms at the end of life, but their use must be monitored by experienced clinicians.
Pain and dyspnea are the most commonly occurring conditions at the end of life.
Data collected between 2004 and 2012 indicated that many symptoms are not relieved at the end of life. There is still insufficient evidence surrounding pain and pain management and confusion between life-limiting illnesses and close-to-death symptoms.
Barriers to providing pain and symptom management still exist, which include patient-related fear, misconceptions, failure to report, and lack of reimbursement for therapy.
Barriers to providing pain and symptom management still exist for providers, which include lack of knowledge, skills, time for adequate symptom assessment and interventions.
Dying children deserve clear, developmentally appropriate communication regarding their illness and prognosis. Providing clear communication to a child can enhance cooperation, reduce anxiety, and lighten the burden of secrecy among family members.
Although specific training is essential, the “6 E’s” strategy can help guide practitioners through conversations with dying children.
Establish: Establish the importance of open communication between parents, children, and caregivers early in the course of illness.
Engage: Open a dialogue with the child at the appropriate time, being alert to cues of increased stress.
Explore: Assess what the child already knows, and wishes to know about his or her illness (e.g., how much the child wants to know).
Explain: Explain the child’s medical condition in a developmentally appropriate manner
Empathize: Allow the child to be upset and express his or her feelings.
Encourage: Reassure the child that his or her health care providers will be available and continue to support him or her through the disease process and that their family will be there for them.
Allies in facilitating communication with the dying child.
Employ the assistance of expressive and creative arts therapists and other providers who may be able to facilitate a child’s self-expression of fears in a nonthreatening manner. These include child life, art, music therapists, and social workers.
Barriers to communication.
The provider must be mindful of his or her own emotional reactions.
A child’s parents may choose to selectively pass along only information that is deemed to be “hopeful” or reinforces their own ideas regarding a child’s current clinical condition.
The provider must be aware of the myths surrounding communicating with dying children, and provide appropriate anticipatory guidance to concerned families. Examples of such myths include what the child actually understands and envisions for himself.
Children are individuals and grieve as individuals.
Consider a child’s developmental level when implementing a plan:
Infants and very young children (up to 2 years of age):
Do not have a true concept of death, but are aware of subtle changes in the mood and structure of the family at large. May develop sleep or feeding problems, changes in behavior, irritability, become clingy or quiet.
Young children (2-6 years of age):
Operate as “magical thinkers” without logic or ability to reason through situations.
Do not see death as permanent, and may believe that past behavior contributed to their sibling’s death (thoughts such as “did he or she die because I got mad at him or her?”).
Manifest grief through changes in behavior, including fear, developmental regression, altered sleep patterns, temper tantrums.
School-age children (6-9 years of age):
Recognize that death is permanent and believe that death is frightening with preconceived notions. Will ask questions.
May develop worries about imaginary personal illnesses; children at this age may also have fears of loss of their parents.
Older children and adolescents (9-18 years of age):
Have a very concrete view of death; understand that death is final and that everyone will eventually die, including them.
Grieving adolescents may exhibit their grief through changes in behavior, sleeping or eating habits, and express feelings of guilt that they are healthy and their sibling has died.
Prior to the death of a sibling, caregivers should encourage the family to allow their healthy children to visit and be present.
When explaining death and the dying process to any child, it is important to use correct language:
Use frank words such as dying and dead, and be clear about the meaning of these words.
Avoid euphemisms such as:
“______ passed on” (when are they coming back?)
“We lost ______ ” (well, go find them)
Adult caregivers should be encouraged to answer the sibling’s questions openly and honestly, and provide reassurance to address fears.
Children, like adults, will continue to experience grief as they grow and develop, and “re-grieve” the death of their brother or sister as they mature and their own life changes, especially with milestones such as birthdays and graduations.
Grieving is a natural process and can contribute to growth in the survivors when the death is effectively integrated into their personal life story.
Bereaved parents report that clear, honest communication from care providers is most helpful at points of decision making.
Avoid phrases such as:
“There’s nothing more we can do.”
“We are out of options.”
Discussion of the family’s goals of care will guide recommendations of medical management. Comprehensive symptom management and palliation are always an option.
Anticipatory guidance for parents.
Many families find a child’s respiratory pattern to be the most distressing at the end of life and misinterpret breathing pattern to be uncomfortable.
Common changes to a child’s respiratory pattern include:
Dyspnea and periods of apnea or irregular breathing.
“Death rattle” associated with poor handling of oral secretions as death approaches.
It is important for families to understand that as the child’s death approaches, their level of awareness, and therefore their ability to experience suffering, is diminished.
One of the most critical roles the practitioner can play is to provide proper anticipatory guidance to the family along with aggressive palliation and rationale for medical interventions.
Encouragement for the family to provide physical care and contact as they are comfortable and the child can tolerate, such as gentle massage, touching, holding and singing, or talking to the child.
It may be appropriate to have frank discussions with families about limitations of aggressive life-sustaining therapies and resuscitation status depending on the practitioner’s role and relationship to the family.
Palliative care is a focus of care and a medical discipline with the primary goal of reducing the morbidity of illness, slowing the progression of disease, and improving a child’s quality of life at any stage of disease.
The American Academy of Pediatrics supports an integrated model of palliative care that focuses on both curative attempts and aggressive measures of palliation throughout the child’s disease course.
The goal of palliative care is to add life to the child’s years, not simply years to the child’s life (Committee on Bioethics, 2000).
Hospice care is both a philosophy of care and a method for delivering compassionate, competent, and consistent care to children with chronic, complex, life-threatening illness, with goal of improving quality of life.
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