High-quality palliative care is the standard for children with life-threatening illness, especially when a cure is not possible. This review outlines a model for clinical practice that integrates clinical, psychosocial, and ethical concerns at the end of life (EOL) into a standard operating procedure specifically focused on inpatient deaths. Palliative care for children at EOL in the hospital setting should encompass the personal, cultural, and spiritual needs of the child and family members and aim to minimize suffering and increase support for all who are involved, including hospital staff.
Key points
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Caring for hospitalized children at the end of life (EOL) requires an interdisciplinary approach to address the complex physical, psychosocial, and spiritual needs of patients and families.
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Using a standard operating procedure at EOL can help ensure that children who die in the hospital and their families receive high-quality care that addresses their physical, psychosocial, and spiritual needs.
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Using a checklist to address these areas and assigning tasks to members of the interdisciplinary team can facilitate the delivery of comprehensive EOL care.
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Ethics consultation is advisable to resolve refractory conflict over goals of care, ethical or moral distress, or considerations of uncommon medical pathways at EOL.
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The religious and spiritual needs of families are diverse, and these needs should not be overlooked when children die in the inpatient setting.
Introduction
Pediatric palliative medicine can be thought of as “the art and science of patient- and family-centered care aimed at enhancing quality of life, promoting healing and attending to suffering.” The National Quality Forum (NQF), Institute of Medicine, and the National Institutes of Health have identified palliative and end-of-life (EOL) care as a national priority and proposed that palliative care should be a key component of high-quality medical care for children with advanced illness. The NQF has outlined preferred practices to ensure the provision of high-quality palliative care, with the role of the palliative care clinician including anticipatory counseling for EOL symptoms; symptom control; and emotional, social, spiritual, and bereavement care. This NQF-recommended interdisciplinary approach needs to be integrated early so that the interdisciplinary palliative care team can support families and patients in defining goals of care near the EOL and in determining what type of care can best meet these goals. Designing a palliative care treatment plan that is transferable across all medical settings allows for a smooth transition between different care settings, with the goal of maximizing symptom management and psychosocial support.
Introduction
Pediatric palliative medicine can be thought of as “the art and science of patient- and family-centered care aimed at enhancing quality of life, promoting healing and attending to suffering.” The National Quality Forum (NQF), Institute of Medicine, and the National Institutes of Health have identified palliative and end-of-life (EOL) care as a national priority and proposed that palliative care should be a key component of high-quality medical care for children with advanced illness. The NQF has outlined preferred practices to ensure the provision of high-quality palliative care, with the role of the palliative care clinician including anticipatory counseling for EOL symptoms; symptom control; and emotional, social, spiritual, and bereavement care. This NQF-recommended interdisciplinary approach needs to be integrated early so that the interdisciplinary palliative care team can support families and patients in defining goals of care near the EOL and in determining what type of care can best meet these goals. Designing a palliative care treatment plan that is transferable across all medical settings allows for a smooth transition between different care settings, with the goal of maximizing symptom management and psychosocial support.
Clinical practices at the EOL
Medical Decision Making at the EOL
When it is anticipated that a child or infant will die in the inpatient setting, it is helpful to engage in advance care–planning discussions to facilitate decision making about issues that commonly arise at the EOL. The issues that should be addressed include preferences for limiting the scope of treatment from advanced life-sustaining therapies (eg, dialysis or mechanical ventilation) to basic noninvasive therapies (eg, antibiotics, artificial nutrient, or hydration); preferences for organ donation (when applicable); autopsy; and after-death or funeral planning. For families choosing to discontinue an artificial life-sustaining technology, such as mechanical ventilation, it is recommended that family preferences about the process be solicited and a plan be developed to meet their goals. Considerations around the discontinuation of ventilatory support can include the location for extubation (perhaps outside of the hospital room [eg, in the hospital garden or at home]), family members to be present, and preferences for holding and comforting the infant or child.
Children have an evolving ability to form opinions about their health care, particularly if they have a significant illness history; their opinions should be included and valued in the discussion. Whenever possible, caregivers should make an effort to invite children to participate in medical decision making and honor their EOL care wishes. Inclusion is particularly important for any child, regardless of age, who can understand his or her medical condition, communicate his or her preferences, and can reach a reasonable decision and understand its consequences. For children and adolescents with life-threatening illness, developmentally appropriate advance care–planning documents can provide the opportunity to express their preferences for how they want to be treated should a time come when they cannot speak for themselves. Similar to the “Five Wishes” document for adults ( http://www.agingwithdignity.org/five-wishes.php ), the “My Thoughts, My Wishes, My Voice” documents can be used with adolescents and young adults, and “My Wishes” can be used with younger patients to facilitate discussions about EOL care and preferences. These tools can facilitate communication in families who may be uncertain about how to engage their child in discussion around preferences about their care.
Inpatient Care Coordination at the EOL
The individualized care planning and coordination (ICPC) model outlined in Fig. 1 was designed to facilitate the integration of a cancer-directed goal of cure with a comfort-related goal of reducing suffering but can be extrapolated to EOL care for children with a nonmalignant condition, particularly those in the hospital setting. The goal of individualized care planning is to value patient and family experiences and to use a patient- and family centered approach to information delivery and needs assessment, thus enhancing communication about difficult issues by discerning patient and family values and priorities before crisis occurs or critical decision points are reached. Application of the ICPC model helps patients, families, and clinicians negotiate care options under uncertain conditions by assessing the patients’ and families’ understanding of prognosis, elucidating their goals of care, and allowing them to choose from available goal-directed treatment alternatives.
At no time is use of the ICPC model more important than at the EOL, when clear goals of care are needed to provide quality care. The negative effects of poor communication and insensitive delivery of bad news on the parents’ long-term emotional and psychological well-being are well documented. In a qualitative study of parents of children who died of cancer, doctor-patient communication and continuity of care were characterized as markers of high-quality physician care. Continuity of care was defined as proof that the health care professionals knew the child well enough to provide the best care, that they cared about the child, and that the child felt like an active part of the decision-making process. Because of the large number of providers who care for hospitalized children approaching the EOL, inpatient care requires good communication that clearly conveys the patients’ and families’ goals to the entire care team. The end of this review presents a sample ICPC: an interdisciplinary checklist and communication tool that incorporates clinical practice strategies, psychosocial concerns, and ethical issues for hospitalized children approaching the EOL.
Symptoms at the EOL
The National Consensus Project for Quality Palliative Care outlines a care team structure for the EOL. It is recommended that the interdisciplinary team (IDT) identifies, communicates, and manages the signs and symptoms of patients at the EOL to meet the physical, psychosocial, spiritual, social, and culture needs of patients and families. Providers are responsible for educating the family and other care providers about the symptoms of imminent death in a culturally and developmentally appropriate way. The IDT members should routinely assess patients for sources of distress (physical or psychosocial) and develop, document, and implement care plans to initiate preventative and immediate treatment of actual or potential sources of distress. This process should incorporate the patients’ and families’ preferences, including any unique needs that arise during the dying process or after the child’s death.
Children who are hospitalized at the EOL may receive intensive treatment aimed at cure or extending life and are at risk for experiencing significant suffering related to new or worsening symptoms. Fatigue, pain, dyspnea, and poor appetite are among the most commonly reported symptoms of pediatric patients with cancer at the time of death. Symptoms for patients without cancer may vary based on disease and clinician situation but commonly include pain and dyspnea. The National Comprehensive Cancer Network (although largely focused on care for adults with cancer) and various pediatric palliative care experts have developed clinical practice guidelines and symptom algorithms to manage emesis, anemia, fatigue, distress, and pain in patients with cancer, which may be used in pediatric patients and those without cancer who have similar symptoms. Teams caring for children at EOL should integrate symptom assessment tools into patient care that facilitate the identification of sources of suffering. Symptom control practices should be quickly and properly implemented and continually reassessed in patients. Symptom management should include effective stepwise pharmacologic and nonpharmacologic (eg, hypnosis, acupuncture, relaxation techniques) approaches. Institutional guidelines for accessing palliative care consultation, if this has not already occurred, can facilitate early detection and proactive management of symptoms at their outset.
Physicians or other members of the IDT should allow time to discuss other possibly concerning symptoms, such as changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The most useful techniques in managing these symptoms have been identified in patients with cancer but are broadly applicable: appropriately treating pain and anxiety, spending time with patients and their families, providing competent care, and giving advice or providing anticipatory guidance. Preparing families and staff members during the dying process may contribute to the family’s sense of control during this tumultuous time.
Management of Pain and Nonpain Symptoms
Age-adapted tools and principles as well as specific therapeutic parameters guide the assessment and management of symptoms. Tables 1 and 2 summarize the most commonly used medications to manage pain and other common symptoms at EOL as well as dosing information for children.
| Symptom | Medication | Common Pediatric Dosage (<60 kg) | Maximum Daily Dosage a |
|---|---|---|---|
| Agitation and/or delirium | Nonpharmacologic | Familiar objects, low lighting, soothing tones, music | — |
| Lorazepam b | 0.05 mg/kg/dose PO, SL (preferred for seizure), or PR every 4–6 h | 2 mg per dose | |
| Chloral hydrate | 25–50 mg/kg/d PO/PR divided ever 6–8 h | 1 g/d for infants 2 g/d for children | |
| Haloperidol | 0.01–0.02 mg/kg per dose PO, SL, or PR every 8–12 h | 0.15 mg/kg/d | |
| Constipation/opioid induced (refractory) | Lactulose (can be diluted in water, juice, milk) | <12 y 7.5 mL PO/d, may be repeated after 2 h | 60 mL/d |
| >12 y 15–30 mL PO/d, may be repeated after 2 h | |||
| Polyethylene glycol | Half to 1 packet (17 g) PO every day up to TID | 3 packets per day | |
| Docusate/senna | 2–6 y: half tab daily, 1 tab BID | 1 tab BID | |
| 6–12 y: 1 tab daily 2 tabs BID | 2 tabs BID | ||
| ≥12 y: 2 tabs daily | 4 tabs BID | ||
| Methylnaltrexone | <38 kg: 0.15 mg/kg (round up to nearest 0.1 mL of volume) SQ QOD prn | 1 dose per 24 h | |
| 38–62 kg: 8 mg SQ QOD prn | |||
| Dyspnea | Nonpharmacologic | Elevate head of bed, fluid restriction, suctioning (gentle), bedside fan, flowing air (oxygen no benefit over flowing air) prn comfort | — |
| Morphine | 0.15 mg/kg PO/SL q 2 h prn (titrate to effect) | — | |
| With associated anxiety | Lorazepam b | 0.05 mg/kg PO/SL q 4-6 h prn (titrate to effect) | 2 mg per dose |
| Nausea/dysmotility | Nonpharmacologic | Avoid irritating foods or smells, relaxation, biofeedback, acupuncture, aromatherapy | — |
| Ondansetron | 0.15 mg/kg/dose PO/IV q 8 h prn | 8 mg per dose | |
| Promethazine | >2 y: 0.25 mg/kg per dose PO or IV q 6–8 h prn | 1 mg/kg/24 h | |
| Scopolamine (transdermal) | 8–15 kg: half patch TD q 3 d, >15 kg: 1 patch TD q 3 d | 1 patch every 3 d | |
| Metoclopramide | 0.01–0.02 mg/kg per dose IV q 4 h | — | |
| Pruritus/opioid associated | Nonpharmacologic | Distraction, topical emollients, oatmeal baths, relaxation; when applicable, consider opioid rotation | — |
| Diphenhydramine b | 0.5–1.0 mg/kg per dose PO/IV q 6–8 h | 5 mg/kg/24 h or 400 mg/24 h | |
| Hydroxyzine | <6 y: 50 mg/d PO divided q 6–8 h | 4 mg/kg/24 h | |
| >6 y: 50–100 mg/d PO divided q 6–8 h | — | ||
| Naloxone (low dose) | 0.5–1 mcg/kg/h infusion | — | |
| Secretions | Nonpharmacologic | Fluid restriction, gentle suctioning | — |
| Glycopyrrolate | 0.04–0.1 mg/kg per dose PO q 4–8 h | 1–2 mg per dose or 8 mg/d | |
| 0.01–0.02 mg/kg IV q 4–6 h | |||
| Seizures | Lorazepam b | 0.05 mg/kg per dose PO, SL (preferred for seizure), or PR every 4–6 h | 2 mg per dose |
a Common maximum dosage; however, dose escalation may be necessary at the EOL to relieve patient suffering.
| Nonpharmacologic | Deep Breathing (blowing bubbles), Progressive Relaxation, Biofeedback, Hypnosis Touch therapy (massage, physical therapy, heat/cold, acupuncture/pressure) Distraction (art/music/play therapy, imagery) |
| Drug | Initial Dose (mg/kg per Dose Unless Noted Otherwise) | Route | Interval | Maximum Dose | Formulation |
|---|---|---|---|---|---|
| Acetaminophen | 10–16 | PO/PR/IV | q 4 h | 1 g/dose; 4 g/d | T, CT, L, D, S, I |
| Ibuprofen | 5–10 | PO | q 6 h | 2.4 g/d; 3.4 g/d (adults) | T, CT, L, D |
| Choline magnesium trisalicylate | 7.5–20.0 | PO | BID–TID | 1.5 g/dose | T, L |
| Naproxen | 5–7 | PO | q 8–12 h | 1 g/dose; 4 g/d | T, L |
| Ketorolac | 0.5 | PO, IV | q 6 h | 30 mg/dose iv, 10 mg/dose PO | I, T |
| Tramadol | 1–2 | PO | q 6 h | 100 mg/dose, 400 mg/d | T |
| Morphine | 0.2–0.5 | PO, SL, PR | q 3–4 h | Titrate | T, L, D, S |
| 0.1 | IV, SQ | q 2–4 h | Titrate | I, T | |
| 0.3–0.6 (long acting) | PO | q 8–12 h | Titrate | SRT | |
| Hydromorphone | 0.03–0.08 | PO, PR | q 3–4 h | Titrate | T, L, S |
| 0.015 | IV, SQ | q 2–4 h | Titrate | I, T | |
| Methadone | 0.2 | PO | q 8–12 h | Titrate | T, L |
| 0.1 | IV, SQ | q 8–12 h | Titrate | I, T | |
| Fentanyl | 0.5–1 μg/kg/h | Transdermal | q 48–72 h | Titrate | P |
| 5–15 μg/kg (sedative) | TM | q 4–6 h | Titrate | LO | |
| 1–2 μg/kg | IV, SQ | q 1–2 h | Titrate | I, T | |
| Oxycodone | 0.05–0.15 | PO | q 6 h | Titrate | T, L |
| 0.1–0.3 (long acting) | PO | q 12 h | Titrate | SRT |
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