Pain Management at the End of Life: Pediatric (Hospice and Palliative Care)

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    Pain Management at the End of Life: Pediatric (Hospice and Palliative Care) - CE/NCPD


    Identify patients at high risk for adverse opioid-related outcomes (e.g., patients with sleep apnea, receiving continuous IV opioids, or on supplemental oxygen).undefined#ref6">6


    Symptom management at the end of life can be challenging. An interdisciplinary plan of care that is developed in collaboration with the patient, family, and caregivers results in fewer hospitalizations and emergency visits.3

    Effective pain management considers factors that influence pain assessment, such as the patient’s pain history, current pain, developmental level, coping strategies, and cultural background. For the pediatric hospice patient, the nurse should collaborate with the patient, family, and caregivers to set pain management goals, to identify methods and techniques that have been successful in the past, and to identify behaviors and cues that indicate the presence of pain.

    Barriers to adequate treatment of pain in pediatric patients can be overcome when the hospice or palliative care team understands:

    • Infants and children do feel pain.
    • Respiratory depression or other adverse reactions from opioid medications can be identified and managed.4,5
    • The nature of pain includes psychological, social, spiritual, and cultural aspects.4,5
    • Effective pain management occurs when nonpharmacologic methods are combined with medication.4,5

    Pain is a complex phenomenon that is much more than a single sensation caused by a specific stimulus. The most effective pain management involves a combined approach of developmentally appropriate nonpharmacologic strategies along with the administration of medications. Nonpharmacologic strategies4 may include cold or warm packs; comfort measures, such as talking or singing with the family, hugs, hand-holding, or a back massage; and distractions, such as games, bubbles, videos, and listening to music or music therapy. Acupressure, acupuncture, aromatherapy, and massage have been effective in alleviating pain in pediatric patients near the end of life.5 There is a common value in hospice and palliative care that the pediatric patient should not live or die in pain, so that nonpharmacologic interventions should not replace pharmacologic interventions. These should be considered as concomitant strategies to control pain.

    The World Health Organization (WHO) stepladder approach, adapted for pediatric patients, includes a two-step program for pain management. This approach is appropriate for pain in the terminally ill patient for most nociceptive, visceral, and somatic pain. The first step is the use of nonopioids, such as acetaminophen, for mild pain; the second step is the use of pure or strong opioids, such as morphine, fentanyl, or methadone, for moderate to severe pain. The use of weak opioids, such as codeine, hydrocodone, and tramadol, are contraindicated for use in the pediatric population because of potential risks and uncertainty of response in children. Opioid doses in pediatric patients should be titrated and based on patient-specific factors. Use extreme caution when calculating the dose for sublingual or buccal opioid administration. The small volume needed for absorption increases the risk of medication error. Adjuvant medications can be included at any time. Examples of adjuvant medications include clonidine (which can enhance the relief obtained by opioid medications), gabapentin, low-dose naloxone, baclofen, lorazepam, sucralfate, corticosteroids, and amitriptyline.1,5

    Breakthrough pain can occur with suctioning, repositioning, or other activity. This can be avoided with premedication before engaging in activity that may exacerbate pain.

    Some patients may be on a basal rate of analgesic medication or extended-release medication. A basal rate is a continuous low-dose analgesic to keep a steady state of pain relief without peaks and valleys. This is usually administered with patient-controlled analgesia (PCA). When pain becomes more than this basal rate or extended-release medication can manage, additional medication may be needed. The use of an extended-release opioid is generally administered two or three times per day.4 Breakthrough pain can occur with suctioning, repositioning, strong emotional responses, or physical activity. Breakthrough pain can be treated with an immediate-release opioid or activation of the PCA pump. It can also be avoided with premedication before engaging in activity that is expected to exacerbate pain. If breakthrough pain occurs repeatedly, the basal rate or extended-release analgesic medication should be adjusted to prevent a recurrence. The addition of low-dose naloxone to the basal rate of the opioid has been shown to reduce the incidence and severity of opioid-related constipation, pruritus, and nausea.1

    Many families have concerns about addiction. Nurses must understand the differences between addiction, physical dependence, and tolerance. Addiction is the psychological craving for the medication or drug. This occurs rarely in young children, but it can be seen in adolescents. Dependence is when physical symptoms develop after a medication or drug is discontinued. Tolerance occurs when the body becomes accustomed to the medication or drug and a higher dose is required for the same level of pain relief. Family with concerns are at risk of underdosing the patient. Ongoing support and communication with the patient, family, and caregivers is vital to ensure adequate pain management.2

    As the patient nears the end of life, pain can become worse, tolerance to opioids escalates, and the oral route may not be available as the patient loses the ability to swallow. Opioid rotation can address some of these challenges. Opioid rotation includes changing to a different medication using the same route of administration, maintaining the current medication but changing the route of administration, or changing both the medication and the route of administration. Using an equianalgesic dose chart can help facilitate these changes.5 Alternative routes may also be used for opioid administration. These routes include sublingual or buccal, dermal, and intravascular.

    Successful pain management requires a holistic approach to the broad spectrum of problems in pediatric patients who are at the end of life, their family, and caregivers.4 When providing pain management to these patients, the health care team needs to recognize the impact that unresolved psychosocial and spiritual issues can have on pain management. A multidisciplinary hospice team can provide support for terminally ill children and their families.


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    • Consider the patient’s and family’s values and goals in the decision-making process.
    • Assist the patient, family, and caregivers to anticipate the patient’s needs at the end of life.
    • Educate the family and caregivers regarding bereavement care and counseling for survivors.
    • Assist the patient and family to engage and participate as drivers of the plan of care.
    • Provide developmentally and culturally appropriate education based on the desire for knowledge, readiness to learn, and overall neurologic and psychosocial state.
    • Explain the progression of pain as the end of life approaches (e.g., increased need for medication, stronger medication, more frequent doses, alternative routes). Describe what the family and caregivers are likely to see, hear, and experience. Reassure the patient, family, and caregivers that the primary goal is to relieve anxiety and promote the patient’s comfort.
    • Collaborate with the patient and family to develop a pain management plan and review relevant age-specific pharmacologic and developmentally appropriate nonpharmacologic pain-relieving interventions.
    • Explain that consistent and accurate assessments of pain are necessary to treat the patient’s pain appropriately.
    • Provide information about the physiologic and psychological effects of undertreated pain.
    • Collaborate with the family and caregivers to learn and identify the patient’s pain cues and behaviors.
    • Collaborate with the family and caregivers to record medication administration for documenting and reporting control of pain to the health care team.
    • Teach the family about all medications, including indications for use, dosing, frequency, side effects, and signs of allergic reaction.
    • Explain to the family and caregivers that a patient experiencing pain may regress to an earlier developmental level.
    • Discuss opioids with the patient, family, and caregivers; explain their use in pain management and allay any fears of addiction.
    • For the patient on PCA, explain the parameters and safeguards for use. If the organization’s practice allows parent-controlled analgesia, explain when to activate the device.
    • Discuss the importance of a consistent bowel regimen for patients treated with opioids for pain management.
    • Establish a rapport with the patient, family, and caregivers that encourages questions. Answer them as they arise.


    Consider the benefit of an intervention versus the burden to the patient. The goal of care is to reduce the patient’s anxiety and pain and increase the patient’s comfort and happiness at the end of life. Consider the impact to the family and caregivers.

    1. Perform hand hygiene before patient contact. Don appropriate personal protective equipment (PPE) based on the patient’s need for isolation precautions or the risk of exposure to bodily fluids.
    2. Introduce yourself to the patient, family, and caregivers.
    3. Verify the correct patient using two identifiers.
    4. Assess the patient’s level of consciousness and ability to understand and participate in decisions. Include the patient as much as possible in all decisions.
    5. Assess the patient’s developmental level and ability to interact.
    6. Assess and discuss the patient’s and family’s goal for pain management. Collaborate with the patient and family to develop a plan for pain management.
    7. Assess the patient’s and family’s experiences with pain.
    8. Assess for factors that may alter the patient’s ability to provide a pain response, such as immobilization, neurocognitive impairment, fatigue, anxiety, and medications affecting heart rate and blood pressure.
    9. Assess the patient’s, family’s, and caregivers’ understanding of the reasons for and the risks and benefits of pain management.
    10. Consider the patient’s and family’s culture, including their beliefs and practices, in the pain assessment and plan accordingly.
    11. Assess the patient’s response to pharmacologic and nonpharmacologic interventions.
    12. Identify the nonpharmacologic pain treatment modalities that work best for the patient.
    13. Assess for concomitant symptoms from the side effects of opioids, such as constipation, nausea, vomiting, pruritus, sedation, respiratory depression, confusion, hallucinations, and urinary retention.5
    14. Assess the family’s and caregivers’ understanding and expectations regarding physiologic and behavioral changes that are likely to occur as the patient approaches the end of life.
    15. Assess the need for social work, counseling services, and spiritual care for the patient, family, and caregivers.
    16. Evaluate the patient’s, family’s, and caregivers’ understanding of the hospice philosophy.


    1. Prepare the patient’s environment for any painful procedure or treatment (e.g., suctioning, dressing change).
      1. Adjust the temperature, lighting, and sound to suit the patient, family, and caregivers without interfering with the ability to perform the procedure.
      2. Minimize activity by preventing unnecessary interruptions, coordinating activities, and planning for rest periods. Consider clustering care around pain medication administration times.
      3. Provide privacy for the patient.
    2. Ensure that the patient, family, and caregivers understand the purpose of pain management at the end of life and that questions are answered.
    3. Create an environment of trust that allows conversation regarding the management of expectations, the right to die pain-free with dignity, and understanding of the process of caring, not curing. Consider the developmental level of the patient.
    4. Create an environment that advocates for the patient’s needs using a holistic interdisciplinary team. Engage the team to assist and support the patient, family, and caregivers during the last phase of life.
    5. Prepare the family and caregivers for the progression of pain management as the end of life approaches, including the need for increasing doses or frequency of medication. Describe what the family and caregivers are likely to see, hear, and experience. Reassure the patient, family, and caregivers that the primary goal is to relieve anxiety and promote the patient’s comfort.
    6. Obtain the patient’s weight in kilograms, for medication administration.
    7. Verify the practitioner’s order.
    8. Prepare an area in a clean, convenient location and assemble the necessary supplies.


    1. Perform hand hygiene. Don appropriate PPE based on the patient’s need for isolation precautions or the risk of exposure to bodily fluids.
    2. Explain the procedure to the patient, family, and caregivers and ensure that the patient and family agree to treatment.
    3. Remove as many uncomfortable stimuli as possible.
    4. Assist the patient to a comfortable position.
      Rationale: Turning and repositioning reduces pain stimulation and pressure receptors and maximizes the response to pain-relieving interventions.
    5. Provide appropriate psychosocial and nonpharmacologic interventions to help the patient relax.
      1. Offer the patient a favorite security object (e.g., special blanket).
      2. Reduce environmental stimuli.
      3. Swaddle an infant and offer a pacifier as appropriate.
      4. Alleviate anxiety by giving age-appropriate information.
      5. Pray with the patient and family, if appropriate.
      6. Provide sensory distraction, such as aromatherapy, blowing bubbles, listening to music or music therapy, or playing a favorite video or video game.
      7. Use gentle massage, if appropriate.
      8. Assist the patient in the use of guided imagery.
      9. Create a comfortable environment; adjust the temperature, lighting, and the use of pillows for positioning.
    6. Encourage the family and caregivers to participate and remain with the patient as much as possible.
      Rationale: The family’s and caregivers’ presence and participation are key parts of the patient’s care.
    7. Attempt nonpharmacologic interventions in conjunction with administering analgesics, as appropriate.
    8. If nonpharmacologic interventions and current analgesics are ineffective, or none have been ordered, consult with the practitioner regarding an order for analgesics.
    9. Administer analgesics as ordered.
    10. Administer medications for adverse effects known to be painful for the patient.
      Rationale: Premedication prevents or minimizes unpleasant responses to painful activities (e.g., suctioning, repositioning). When a painful reaction is common to the patient, the patient should not have to wait to ask for treatment.
    11. Reassess the patient’s pain status, allowing for sufficient onset of action per the medication, route, and the patient’s condition. Assess for adverse reactions to the medication (e.g., respiratory depression).
      Rationale: Reassessments identify the effectiveness of current pain management and guide further efforts of pain management.
    12. Discard or store supplies, remove PPE, and perform hand hygiene.
    13. Document the procedure in the patient’s record.


    1. Continue to assess, reassess, and treat the patient’s pain using a developmentally appropriate pain assessment tool. Consider the patient’s age, condition, and ability to understand.
      1. Reassess pain after an intervention and regularly over time with methods of pain assessment and specific behavioral indicators that are appropriate for the individual patient.
      2. Reassess pain on a scheduled basis for a patient who reported pain on a previous assessment. Incorporate the assessment intervals into the treatment plan and base them on:
        1. Organization practice or guidelines for routine reassessments
        2. The patient’s condition, including the cause of the pain, pain severity, and comorbidities
        3. New pain, an exacerbation of reported pain, or change in activity
        4. If medication is administered, reassessment of pain status, per the medication’s expected onset of action
        5. A reasonable interval after an activity or procedure that causes or exacerbates pain
      3. Maintain a record of the patient’s assessment, including pain indicators, and interventions. Keep this record in a location available to the hospice or palliative care team, including the patient, family, and caregivers.
        Rationale: Making this record available to the patient, family, and caregivers helps them continue adequate pain management when the hospice or palliative care team is not present.
    2. Monitor the completeness and accuracy of the home medication administration record provided by the family.
    3. Anticipate and prepare the family to provide pain management interventions if current medications are not effective in relieving the patient’s pain.
    4. Compare the patient’s current pain intensity with the previously set goal.
    5. Compare the patient’s ability to function, perform activities of daily living (ADL), play, and interact before and after pain-relieving interventions. Use some form of play with the patient in the assessment(s), intervention(s), and evaluation(s).
      Rationale: Comparing the ability to function before and after pain-relieving interventions determines their effectiveness, especially in patients who are nonverbal.
      Report to the practitioner an inability to function, perform ADLs, play, or interact.
    6. Evaluate for the presence of analgesic side effects.
      Rationale: Side effects of analgesics may be controlled by reducing the dose, increasing time intervals between doses, or administering adjuvant analgesics.
      Report to the practitioner excessive somnolence, respiratory depression, pruritus, nausea, and vomiting.
    7. Evaluate and assist the family’s coping with the patient’s status regarding pain and pain-relieving interventions.
    8. Do not discontinue an opioid or benzodiazepine medication without a weaning plan in place and monitor for withdrawal behaviors.
      Report to the practitioner irritability, tremors, hyperactivity, seizures, insomnia, abdominal cramping, nausea, vomiting, diarrhea, sweating, fever, chills, nasal congestion, rhinitis, tachypnea, and tachycardia, all without other physiologic causes.
    9. Assist the patient, family, and caregivers with resources to support emotional, psychosocial, and spiritual needs. Encourage them to use available community resources and volunteers.
    10. Encourage the patient, family, and caregivers to use the 24-hour telephone line for questions and concerns as they arise.


    • Patient verbalizes or manifests relief from pain.
    • Patient exhibits nonverbal pain relief, such as relaxed body, smiling face, or interest in playing.
    • Patient’s function improves as evidenced by more restful sleep, improved nutrition, increased developmentally appropriate activity, and interactions with others.
    • Patient is free from side effects of pain medication.


    • Patient, family, or caregivers verbalize continued pain that exceeds pain-intensity goal, describe worsening of pain, or identify pain in a different location; or patient displays nonverbal behavior reflecting pain (i.e., regresses further).
    • Patient experiences adverse reaction(s) to medication or other interventions, such as apnea or bradypnea, nausea, vomiting, constipation, itching, sleepiness, or withdrawal.


    • Patient’s weight in kilograms per the organization’s practice
    • Patient’s vital signs per the organization’s practice
    • Patient’s level of consciousness
    • Patient’s response to medication, including any adverse reactions
    • Patient’s or family’s report of pain level, using a developmentally appropriate pain assessment tool, desired pain level, level of consciousness, and description of pain
    • Nonpharmacologic methods used for pain management and their effectiveness
    • Date and time pain is assessed, location and type of pain
    • Date and time of administration of pain medication (name, route, dose, location of injection if applicable)
    • Patient’s behaviors prior to administration of pain medication and after administration
    • Pain-relieving interventions implemented and their effectiveness (e.g., adequate or inadequate)
    • Reductions in the patient’s function if determined (adverse reactions from pain interventions [pharmacologic and nonpharmacologic, or both])
    • Findings of ongoing assessments, interventions completed (including notification of practitioner, if done), and patient’s response to interventions
    • Whether the patient is sedated or paralyzed and physiologic cues that helped determine whether the patient was in pain (if applicable)
    • Complications and related interventions
    • Education
    • Patient’s and family’s progress towards goals
    • Assessment of pain, treatment if necessary, and reassessment


    1. Altshuler, C., Gladen, K. (2021). Chapter 6: Analgesia and procedural sedation. In K. Kleinman, L. McDaniel, M. Molloy (Eds.), The Harriet Lane handbook (22nd ed., pp. 126-144). Philadelphia: Elsevier.
    2. Greenfield, K. and others. (2022). Healthcare professionals’ experiences of the barriers and facilitators to pediatric pain management in the community at end-of-life: A qualitative interview study. Journal of Pain and Symptom Management 63(1), 98-105. doi:10.1016/j.jpainsymman.2021.06.026 (Level V)
    3. Larrow, A. and others. (2022). Empowering pediatric palliative homecare patients and caregivers with symptom management plans. Journal of Pain and Symptoms Management, 64(4), 340-348. doi:10.1016/j.jpainsymman.2022.06.015 (Level III)
    4. Martin, S.D. and others. (2019). Chapter 5: Pain assessment and management in children. In M.J. Hockenberry, D. Wilson, C.C. Rodgers (Eds.), Wong’s nursing care of infants and children (11th ed., pp. 137-168). St. Louis: Elsevier.
    5. Santucci, G., O’Brien, J. (2017). Chapter IV: Pain management for children with life-limiting conditions and at the end of life. In G. Santucci (Ed.), Core curriculum for the pediatric hospice and palliative care nurse (pp. 53-71). Pittsburgh: Hospice and Palliative Nurses Association. (Level VII)
    6. U.S. Department of Health and Human Services. (2019). Pain management best practices inter-agency task force report: Updates, gaps, inconsistencies, and recommendations. Retrieved April 17, 2023, from

    Elsevier Skills Levels of Evidence

    • Level I - Systematic review of all relevant randomized controlled trials
    • Level II - At least one well-designed randomized controlled trial
    • Level III - Well-designed controlled trials without randomization
    • Level IV - Well-designed case-controlled or cohort studies
    • Level V - Descriptive or qualitative studies
    • Level VI - Single descriptive or qualitative study
    • Level VII - Authority opinion or expert committee reports


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