32. Pain Management & Pediatric Palliative & End-of-Life Care
Brian S. Greffe, MD
Jeffrey L. Galinkin, MD, FAAP
Nancy A. King, MSN, RN, CPNP
Children experience pain to at least the same level as adults. Multiple studies have shown that neonates and infants perceive pain and have memory of these painful experiences. Frequently, children are underprescribed and underdosed for opioid and nonopioid analgesics due to excessive concerns of respiratory depression and/or poor understanding of the need for pain medications in children. Few data are available to guide the dosing of many pain medications and the majority of pain medications available on the market today are unlabeled for use in pediatric patients.
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Standardizing pain measurements require the use of appropriate pain scales. At most institutions, pain scales are stratified by age (Table 32–1) and are used throughout the institution from operating room to medical floor to clinic, creating a common language around a patient’s pain. Pain assessment by scales has become the “5th vital sign” in hospital settings and is documented at least as frequently as heart rate and blood pressure at many pediatric centers around the world. There are many pain scales available, all of which have advantages and disadvantages (Figures 32–1 and 32–2, and Table 32–2, for examples). It is less important what type of scale is used, but that they are used on a consistent basis.
Table 32–1. Pain scales—description and age-appropriate use.
Figure 32–1. Bieri Faces Pain Scale, revised. (Reproduced with permission from Hicks CL, von Baeyer CL, Spafford P, et al: Faces Pain Scale-Revised: Toward a Common Metric in Pediatric Pain Measurement. PAIN 2001;Aug:93(2):173-183 [PMID: 2367140].)
Figure 32–2. Wong-Baker Pain Scale. (Reproduced with permission from Hockenberry MJ, WilsonD: Wong’s essentials of pediatric nursing, ed 8, St. Louis, 2009, Mosby. Used with permission. Copyright Mosby [PMID: 11291631].)
Table 32–2. FLACC pain assessment tool.
Noncommunicative patients such as neonates and the cognitively impaired are often difficult to assess for pain. For these patients using an appropriate assessment tool (see Table 32–1) on a frequent basis (every 1–2 hours) is essential in ensuring adequate pain control. For these populations, increasing pain score trends are often a sign of discomfort.
Bieri D et al: The Faces Pain Scale for the self-assessment of the severity of pain experienced by children: development, initial validation, and preliminary investigation for ratio scale properties. Pain 1990;41:139–150 [PMID: 2367140].
Merkel SI et al: The FLACC: a behavioral scale for scoring post-operative pain in young children. Pediatr Nurs 1997;23: 293–297 [PMID: 9220806].
Wong DL, Baker CM: Smiling faces as anchor for pain intensity scales. Pain 2001;89:295–300 [PMID: 11291631].
Acute pain is caused by an identifiable source. In most cases, it is self-limiting and treatment is a reflection of severity and type of injury. In children, the majority of acute pain is caused by trauma or, if in a hospital setting, an iatrogenic source such as surgery.
Treatment of acute pain is dependent on the disposition of the individual patient. For outpatient care the mainstay of treatment is nonsteroidal anti-inflammatory drugs (NSAIDs) (Table 32–3). Acetaminophen is the most commonly used NSAID. Acetaminophen is administered via the oral or rectal routes. Acetaminophen is more predictable in its effects as an oral dose. It has also been found that round-the-clock administration (oral 10–15 mg/kg, rectal 20 mg/kg) is better than PRN dosing for both minor pain or as an adjunct for major pain. The toxicity of acetaminophen is low in clinically used doses. However, the use of acetaminophen combined with many over-the-counter and prescription combination products has been a frequent cause of toxicity. Liver damage or failure can occur with doses exceeding 200 mg/kg/d. Other oral analgesics available in suspension are ibuprofen (10–15 mg/kg) and naproxen (10–20 mg/kg).
Table 32–3 Suggested doses for nonopioid analgesics.
When pain is more severe, oral opioids can be added for short-term use (Table 32–4). Many of these opioids come formulated with an NSAID, that is, oxycodone/acetaminophen (Percocet) and hydrocodone/acetaminophen (Lortab). When using these combination drugs, the dose of drug is based on the opioid component. Other concomitantly administered similar NSAIDs should be discontinued. The most commonly used oral opioids are oxycodone, hydrocodone, and codeine. The use of codeine is least recommended due to its metabolism. Codeine is metabolized to morphine via the cytochrome P-450 2D4 isoenzyme. From 1% to 10% people (Asians 1%–2%, African Americans 1%–3%, Caucasians 5%–10%) are poor metabolizers as a result of a genetic polymorphism. Thus, patients with this defect get no effect from this drug. A very small percentage of patients (primarily from East Africa) are ultrarapid metabolizers. These patients convert 10–15 times the amount of parent drug to active compound which can result in clinical toxicity. Morphine, oxycodone, and hydrocodone are all available as suspensions, are active as administered, and are metabolized by multiple routes.
Table 32–4. Suggested doses of oral and intravenous opioids in infants and children.
For severe pain not amenable to oral analgesics, an intravenous opioid can be titrated to effect; options for pain relief are dependent on severity and location of pain and age. Intravenous opioids used as bolus dose, continuous infusion, and as part of a patient-controlled analgesia (PCA) infusion have a long track record of both safe and efficacious use in children. Often the NSAID ketorolac 0.5–1.0 mg/kg is used as an adjunct for severe pain. Side effects of ketorolac are the same as for adults: renal insufficiency, gastric irritability, and prolonged bleeding times due to decreased platelet adhesiveness. Patients with bleeding concerns should not receive ketorolac.
PCA pumps can be used in children as young as 6 years with proper instruction and coaching (Table 32–5). Morphine and hydromorphone are the most commonly used drugs for PCA management in the United States. Whenever PCA is used, it is imperative to assess patients frequently (at least hourly) to ensure adequate pain relief.
Table 32–5. PCA dosing recommendations.
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CHRONIC PAIN MANAGEMENT
Chronic pain is a pain that persists past the usual course of an acute illness or beyond the time that is expected for an acute injury. In children this is an increasingly recognized problem. It is estimated that chronic pain may affect as much as 10%–15% of the population. The most common problems include headache, chronic abdominal pain, myofascial pain, fibromyalgia, juvenile rheumatoid arthritis, complex regional pain syndrome, phantom limb pain, and pain associated with cancer. Chronic pain in children often has multiple other contributing factors, including psychological issues, psychosocial factors, sociologic factors, and family dynamics. Associating pain with a single physical cause can lead the physician to investigate the patient with repeated invasive testing, laboratory tests, and procedures and to overprescribe medications. A multidimensional assessment to chronic pain is optimal and often required.
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When possible, a multidisciplinary team approach is standard of care for treating chronic pain in children. All children evaluated for chronic pain should be seen on their initial visit by all primary members of the team to establish a management strategy. Team members should include a pain physician, a pediatric psychologist and/or a psychiatrist, occupational and physical therapists (OT/PT), advanced pain nurses (APNs), and a social worker. The majority of pediatric chronic pain management programs in the United States base their approach on combined intensive rehabilitation and intensive psychotherapy relying minimally on invasive procedures and pharmacotherapy.
A. Tolerance, Dependence, and Addiction
Physiologic and psychological responses to opioids are similar between adults and children. A consensus paper by the American Academy of Pain Medicine, American Pain Society, and American Society of Addiction Medicine defined important differences between normal and pathologic responses to opioids. The definitions of tolerance dependence and addiction are listed below.
1. Tolerance—A state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time. Tolerance develops at different rates for different opioid effects, that is, tolerance to sleepiness and respiratory depression occurs earlier than that to constipation and analgesia.
2. Dependence—A state of adaptation that is manifested by a drug class–specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.
3. Addiction—A primary, chronic, neurobiologic disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following:
• Loss of Control over use of drug
• Craving and Compulsive use of drug
• Use despite adverse Consequences
Addiction is rare when opioids are used appropriately for acute pain on both inpatient and outpatient settings. It should be emphasized that tolerance and dependence do not equal addiction.
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1. Recognition—Withdrawal symptoms can be expected to occur for all patients after 1 week of opioid treatment. Signs of withdrawal in older children include agitation, irritability, dysphoria, tachycardia, tachypnea, nasal congestion, temperature instability, and feeding intolerance. In neonates with withdrawal (neonatal abstinence syndrome), common symptoms include neurologic excitability, gastrointestinal dysfunction, autonomic signs (increased sweating, nasal stuffiness, fever, mottling, poor weight gain), and skin excoriation secondary to excessive rubbing.
• Make a schedule/plan in conjunction with patient and family.
• Factor in duration of time on opioid.
• Consider switching to once-a-day opioid (see methadone dosing in Table 32–4).
• Decrease the dose by 10%–25% every 1–2 days.
• Look for signs of withdrawal.
• Consider adding lorazepam 0.05–0.1 mg/kg every 6–8 hours.
• Consider adding clonidine patch 0.1 mg/d (changed every fifth day).
Hudak ML, Tan RC: Committee on Drugs and Committee on Fetus and Newborn. Neonatal drug withdrawal. Pediatrics 2012 Feb;129(2):e540–e560 [PMID: 22291123].
Richard J et al: A prospective evaluation of opioid weaning in opioid-dependent pediatric critical care patients. Anesth Analg 2006;102:1045–1050 [PMID: 16551896].
PEDIATRIC PALLIATIVE & END-OF-LIFE CARE
It has been estimated that almost 55,000 children die each year in the United States. At least 50% of these children die during the newborn period or within the first year of life. Many of these children, particularly those older than 1 year of age, suffer from illnesses that are clearly life-limiting. Thousands more children are diagnosed with life-limiting illnesses, resulting in a chronic condition that may last for many years, even decades. Furthermore, children who are diagnosed with life-threatening illnesses that may be curable, such as cancer, continue to live with the potential of a recurrence of their malignancy for many years. The above populations are those where palliative and end-of-life care could play an important role during the illness of these patients.
Although commonly used interchangeably, palliative care and end-of-life care are not synonymous terms. Palliative care aims to prevent, relieve, reduce, or soothe the symptoms produced by potential life-limiting illnesses or their treatments and to maintain the patient’s quality of life along the entire continuum of treatment. Provision of palliative care does not imply imminent death nor does it prohibit aggressive curative treatment modalities. Rather, it acknowledges the uncertainty and potential for suffering inherent in a potentially life-limiting condition such as cancer. Understanding how a family defines quality of life and suffering for their child is imperative and provides a framework for decision making between care provider and the family throughout treatment.
While a child is doing well with treatment, the primary focus will be on achieving cure or stabilization of the disease. Palliative care goals at this time focus on promoting quality of life in preparation for survivorship in the face of a potentially life-limiting illness. Some of these goals include helping a family come to terms with the diagnosis, addressing issues of treatment-related pain and distress, facilitating reintegration into the social realms of school and community, and promoting as much normalcy in the child’s life as possible. When it becomes clear that the chances for cure are poor or present an unreasonable cost to the child’s quality of life, the goals of palliative care will shift toward end-of-life care. The focus will still be on promoting quality of life but now in preparation for a comfortable and dignified end of life with increasingly less attention given to the treatment or cure of the disease itself.
When initiating a palliative or end of life care discussion with a patient and family it is important to keep in mind some useful guidelines such as choice of a quiet setting, avoidance of interruptions, assessment of family’s and patient’s perception of the situation, giving useful information to the patient and family, addressing emotional responses, and planning for next steps.
Palliative care not only comprises support in the pain and symptom management of the disease but also addresses equally the psychosocial, emotional, and spiritual needs of the patient with a potential life-limiting illness and their family.
CHILDREN WHO MAY BENEFIT FROM PALLIATIVE CARE INTERVENTIONS
In a recent review by Himelstein et al, conditions that are appropriate for palliative care were divided into four groups as follows:
1. Conditions for which curative treatment is possible but may fail such as advanced or progressive cancer and complex and severe congenital or acquired heart disease
2. Conditions requiring intensive long-term treatment aimed at maintaining the quality of life such as HIV/AIDS, cystic fibrosis, and muscular dystrophy
3. Progressive conditions in which treatment is exclusively palliative after diagnosis such as progressive metabolic disorders and certain chromosomal abnormalities
4. Conditions involving severe, nonprogressive disability, causing extreme vulnerability to health complications such as severe cerebral palsy and anoxic brain injury
The United States Congress mandated in 2010 that palliative care will be covered concurrently with curative therapies for children with terminal conditions who are receiving Medicaid. Based on the Patient Protection and Affordable Care Act, a voluntary election to receive hospice care for a child does not constitute a waiver of any rights of the child to be provided with, or to have payments made for services that are related to the treatment of the child’s condition. This significant milestone in pediatric palliative care should open the door to concurrent care being covered by private insurance companies in the future.
PAIN MANAGEMENT IN PEDIATRIC PALLIATIVE CARE
Optimal pain management is critical when providing pediatric palliative care. (See the section on pain management earlier, for definitions and guidelines for treatment.) As end of life approaches, dosing of comfort medications may eventually exceed normally prescribed doses. The goal at all times must be to achieve and maintain comfort. When pain management at the end of life is provided with this goal at the forefront and in concert with careful ongoing assessment and documentation of the child’s symptoms, there should be no reason to fear that this action is tantamount to euthanasia which is a conscious action intended to hasten death.
QUALITY-OF-LIFE ADJUNCTS & SYMPTOM MANAGEMENT IN PEDIATRIC PALLIATIVE CARE
When offering treatment to children with a life-limiting illness particularly at the end of life, certain nonpain symptoms and signs may develop more quickly in children when compared to the adult population. A thorough and complete history and physical examination should be obtained. It is critical to determine how much distress the symptom causes the child and how much it interferes with child and family’s routine when deciding upon treatment. Areas of management should include drug treatment, nursing care, and psychosocial support. Symptoms that commonly occur during disease progression and at the end of life in children with a life-limiting condition are listed in Table 32–6, with suggestions for management.
Table 32–6. Symptom management in pediatric palliative care.
Complementary & Alternative Modalities
It is not unusual for families seek complementary or alternative modalities (CAM) for their child when mainstream treatment has failed or is unavailable. Children with chronic conditions such as cancer, asthma, sickle cell disease, and epilepsy have a higher incidence of CAM usage compared to the general pediatric population (Post-White et al, 2009). As children approach end of life, many families opt to try some form of CAM. Most often, these treatments are aimed at improving physical or spiritual quality of life. Sometimes the goal is a desperate hope to find a treatment when other options have failed or an attempt to find something perceived as less toxic than mainstream treatments to induce remission, support the child’s ability to fight the disease, or prolong life. Parents report using CAM gives them a sense of control and hope. The most common modalities reported in pediatrics are prayer/meditation, relaxation techniques, massage, chiropractic care including accupuncture, and nutritional supplements (Post-White et al, 2009). The use of CAM in children is influenced primarily by parental use and acceptance of CAM. Culturally accepted beliefs and practices also play an important role. In Asia, the use of meditation and prayer as a method to control pain is well supported by the medical community. In Europe, the use of homeopathic remedies is commonplace.
Studies of the effectiveness of CAM use in children have been small and the data is often conflicting. There is generally an acceptance for the lack of harm associated with mind-body techniques such as prayer, meditation, touch and sensory modalities, and relaxation. Accupuncture and acupressure are gaining more acceptance in the Western medical community and may be beneficial in some children for relief of pain, nausea, and other symptoms. Touch and sensory modalities such as massage, Healing Touch, and aromatherapy can induce a relaxation response in some children which can be very helpful. The use of supplements including botanicals and vitamins has been of more concern due to the lack of dosing information for pediatrics and the potential for serious drug interactions and toxicities. Treatments touted as alternative “cures” are likely not beneficial and can have very dangerous consequences. The cost of CAM, particularly botanicals and alternative medicine treatments, can be prohibitive and the cost is rarely covered by insurance. Hospice providers frequently incorporate relaxation and mind/body/spirit modalities into their programs.
It is important for the healthcare provider to ask parents and adolescents about CAM usage and to be open to discussion with the family about modalities they are using or may wish to consider. Parents consistently have reported in studies their desire to inform and discuss CAM with their healthcare provider, but may be reluctant to do so if they are unsure what response they will get from the provider. Providing families with clear information about the treatment they are considering or using and any contraindications is key. In some cases, recommendation of complementary techniques such as massage, mind/body modalities, and acupuncture/acupressure may be appropriate.
PSYCHOSOCIAL ASPECTS OF PEDIATRIC PALLIATIVE CARE
Pediatric palliative care is unique in that caregivers must be familiar with children’s normal emotional and spiritual development. Working with a child at his or her level of development through the use of both oral and expressive communication will allow the child to be more open with respect to hopes, dreams, and fears. A child’s understanding of death will depend also on his or her stage of development. Children understand death as a changed state by 3 years of age, universality by 5–6 years of age, and personal mortality by 8–9 years of age. Table 32–7 gives a broad overview of children’s concepts of death and offers some helpful interventions.
Table 32–7. Children’s concepts of death.
CHILDREN’S CONCEPT OF DEATH
As end of life approaches, psychosocial support is invaluable to the child and family. Children may need someone to talk to outside of the family unit who can respond to their questions and concerns openly and honestly. Parents may need guidance and support in initiating discussions with or responding to questions from their child about death and dying. Children and adolescents may have specific tasks they wish to complete before they die. Some want to have input into funeral and memorial service plans and disposition of their body. Parents often need support in making funeral arrangements, handling financial concerns, talking with siblings and other family members, and coping with their own grief.
It is important to recognize that grief is not an illness but a normal, multidimensional, unique, dynamic process presenting as pervasive distress due to a perceived loss. Once parents have accepted the reality of the loss of the child, they must then complete the other tasks of grief such as experiencing the pain of their loss and adjusting to an environment without their child in order to move on with their lives. Parents who lose a child are at high risk for complicated grief reactions such as absent grief, delayed grief, and prolonged or unresolved grief. Siblings are also at risk for complicated grief and require special attention.
SPIRITUAL & CULTURAL SUPPORT
Healthcare decisions are often intertwined with a family’s culture and belief system. Understanding the influences of a family’s beliefs and culture allows the practitioner to provide sensitive, appropriate care, particularly at the end of life. Interaction with members of the family’s faith and cultural communities can often be instrumental in helping both the care team and the community support of the family. Allowance for specific prayers, rituals, or other activities may help facilitate procedures and discussions.
Families who speak a foreign language probably suffer from inadequate support the most. Every effort should be made to find and utilize a qualified interpreter, particularly for any discussion that involves delivering difficult news or making critical decisions. Many times, the role of interpreter is imposed upon a bilingual family member or friend who may not understand medical terminology well enough to translate clearly or who may deliberately translate the information inaccurately in an attempt to protect the family.
WITHDRAWAL OF MEDICAL LIFE SUPPORT
Medical technology has enabled many children with serious health conditions to enjoy a good quality of life. When technological support no longer enables a child’s quality and enjoyment of life or there are no viable options to restore quality of life to the child, it may be appropriate to discontinue it. Feeding tubes, ventilators, dialysis, parenteral nutrition, and implanted cardiac pacemakers are examples of medical modalities that may need to be reevaluated when a child’s condition deteriorates or in the case of a catastrophic injury.
There are five circumstances in which withdrawal of medical support and technology can be considered in children (Tournay, 2000) (see the table below).
At these times, it will be necessary to have a gentle but frank and honest discussion with the family that includes listening to their understanding of the child’s situation and prognosis. Helping them identify and define what quality of life means to their child and to the family and what would be an intolerable life for the child is important. It is critical to present in a clear and understandable format the child’s medical condition, test results, and the treatments that have been tried, what the expectations are for the child’s ability to survive or function and interact with his environment, and why it is believed that current or additional interventions will be futile or induce further suffering. These discussions should be conducted with sensitivity and without need for an immediate answer from the parents. It often takes several such discussions for families to come to a decision that they themselves will be able to live with and families should not be rushed into decision making. The family may request additional testing or retesting to assure themselves they are making the right decision for their child. When feasible, these requests should be honored. Spiritual support may be very helpful to families during this process and should be offered.
Once the family has made the decision to withdraw support, it is helpful to explain what the anticipated course will be following withdrawal, what the child will likely look like during that time and what the plan of care will be to ensure there is no suffering. Create a plan with the family for time and place of withdrawal, who they would like to be there with them, any specific requests for environment such as music, a favorite movie playing, or a book being read, and who they would like to perform the withdrawal. Offering the opportunity for rituals, prayer, or private time prior to or during the withdrawal is appropriate. If death is anticipated to happen quickly after withdrawal, any specific religious requirements for the body after death should be arranged in advance. In all cases of withdrawal, the family should be offered support during the process and after the death occurs.
ADVANCE CARE PLANNING
Advance care planning allows patients and families to make known their wishes about what to do in case of serious or life-threatening problems. Himelstein et al describe advance care planning as a four-step process. First, those individuals considered decision makers are identified and included in the process. Second, an assessment of the patient’s and family’s understanding of the illness and prognosis is made and the impending death is described in terms that the child and family can understand. Third, on the basis of their understanding of the illness and prognosis, the goals of care are determined regarding current and future intervention—curative, uncertain, or primarily focused on providing comfort. Finally, shared decisions about the current and future use or abandonment of life-sustaining techniques and aggressive medical interventions are made. In the event of a disagreement between parents or parents and patient regarding these techniques or interventions, it may be prudent to involve the hospital’s ethics committee in order to resolve these issues.
Some states permit parents to sign an advanced directive that asserts their decision not to have resuscitative attempts made in the event of a cardiac or respiratory arrest outside of the hospital. When an advanced directive is in place, emergency responders are not required to provide cardiopulmonary resuscitation (CPR) if called to the scene. Some school districts will respect an advanced directive on school property, many will not. If a child with an advanced directive in place wishes to go to school, a discussion between the medical team and school officials should be arranged to determine the best plan should the child have a cardiac or respiratory arrest at school.
Parents and, occasionally, the child may bring up the possibility of donating organs or body tissues after death. Although the tissues that may be donated by a child may be limited in some instances by the type of disease (eg, cancer), some parents find immense comfort in knowing their child was able to benefit another. If the parents have not discussed donation with the physician by the time of death and donation is possible, the physician should offer the opportunity to the family.
Autopsy is another subject many physicians find difficult to approach with a family, but it is an important option to discuss. In cases of anticipated death from natural causes, autopsies are generally not mandatory; however, information obtained from an autopsy may be useful for parental peace of mind or medical research. If death at home is to be followed by an autopsy, special arrangements for transporting and receiving the body will need to be made with the mortuary or the coroner.
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