Rogers Textbook of Pediatric Intensive Care

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Chapter 14: Palliative and End-of-Life Care in the Pediatric Intensive Care Unit

home care systems are less available, a primary physician or hospital team may need to be much more closely involved to transfer an ICU patient home, and it may not be possible to do so. There is wide variability in the development of hos pice and palliative care services by country, 26,34 and many economically developing nations do have robust systems in place or lack services for children. 35 Challenges to providing such care in much of the developing world include inadequate infrastructures, extremely impoverished patients, restrictions on opioid prescribing, and few educational opportunities for health care staff. Concurrent care refers to the concept of providing hospice support to patients while they are simultaneously receiving on going curative or life-prolonging therapy. 36 A quandary often arises when patients or families wish to pursue ongoing treat ments such as experimental cancer therapies but would also prefer to remain home as much as possible rather than being hospitalized. Referral to hospice is often the best way of sup porting the latter goal, but in the past this benefit was usually unavailable to patients who wanted ongoing disease-directed treatments. Current U.S. legislation requires that state pro grams support concurrent care for children, and most private insurers have followed by adding this benefit. It is not always clear, however, when timing of hospice referral is appropriate for children. 36 PALLIATIVE CARE TEAMS Palliative care teams are distinct from hospices. These hospital-based clinical teams focus on pain and symptom management, and psychosocial and decision-making support for patients with potentially life-limiting illnesses and their families. Many of these teams work closely with hospices to help ensure smooth transitions of care between inpatient and outpatient teams, but not all patients followed by pallia tive care teams are enrolled in hospice. 18,27 Pediatric-specific teams are not available in all institutions, but the numbers are increasing. 37,38 Palliative care teams do not need to be involved in the care of every patient who dies in an ICU. Managing pain and symp toms, navigating difficult decisions with a family, withdraw ing life-sustaining technologies, and handling the logistics of a death should be core competencies for any ICU team regard less of whether or not a palliative care team is available. 22 A consultative palliative care team may be most useful when a transition to home or a prolonged survival beyond the ICU stay might be anticipated, when focused expertise on difficult symptoms is needed, or when significant time devoted to help ing a family make decisions becomes necessary. Most pallia tive care teams also have a strong multidisciplinary focus, with possible team members including physicians, nurses, social workers, chaplains, psychologists, therapists, and bereave ment coordinators who can continue to support families fol lowing a child’s death.

and dexmedetomidine, with escalating doses near the time of death. 39 Clinicians are sometimes concerned that medica tions administered to treat suffering may hasten death. 40 The principle of double effect (see also Chapter 15: Pain and Se dation Management ) justifies using medications to treat suf fering when necessary even if a patient’s respiratory effort is compromised. In typical practice, it is rarely necessary to invoke this argument as studies have suggested that doses of medications used are not associated with time to death. 41 If doses are titrated on the basis of symptoms, then symptom control should usually occur before respiratory depression. A 20% increase in a dose or infusion for mild symptoms or a 50% increase for severe symptoms is often a good starting place. 42 There is no “ceiling” on the doses of medications that can be used to ensure comfort, particularly for patients who may have become tolerant to medication effects over time. If the patient is still in pain or is dyspneic, the dose can be increased, rapidly if needed. For patients who may go home with hospice, it is important to coordinate with the agency regarding which medications are available to them for home use. Analgesics Opioids are a mainstay of treating both pain and dyspnea. 43 These agents work via central nervous system μ -receptors to provide analgesia and euphoria, with potential side effects of respiratory depression, constipation, nausea, itching, and urinary retention. When using these agents, it is important to anticipate side effects and prevent them if possible (eg, start a bowel regimen). Morphine is a commonly available and inexpensive medication that comes in both short-act ing and long-acting preparations. It can lead to a release of histamine, which can worsen itching, and when used in high doses can lead to hyperalgesia or myoclonus. 42 Chang ing agents may be helpful in these circumstances. Hydro morphone and oxycodone may be useful alternatives, and sometimes rotation between agents improves pain relief and decreases side effects. It is usually best to avoid using co deine and meperidine. Codeine tends to cause nausea out of proportion to its degree of pain relief, and it is ineffective in up to 10% of the population who are slow metabolizers to its active form. When meperidine is used in high doses, the metabolite normeperidine can accumulate, which can lead to seizures. Fentanyl is often used in ICUs because it is fast acting and lipophilic and acts directly rather than through metabolites. However, fentanyl and the other fast-acting synthetic opioids (eg, remifentanil and sufentanil) are less commonly used at the end of life because of expense and the rapid development of tolerance. There is little advantage to its short duration of action in these circumstances, but it may be useful in the trans dermal (patch) form when medication administration is dif ficult by other routes. Methadone differs from the other opioids in that it has a very long half-life and also has additional effects at the N -methyl-d-aspartate (NMDA) receptor. The NMDA effects can be beneficial in achieving pain control when other agents are becoming ineffective and may offer additional help for neuropathic pain. Because of its long half-life, the drug may accumulate days after it is initiated. Close monitoring for side effects such as mental status changes and familiarity with dose titration are both important. Methadone can also prolong the QT interval, so screening electrocardiograms should be performed when starting it. Other medications that can have this side effect should be avoided, or used only when alternatives are not available. Ketamine is a nonopioid

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PAIN AND SYMPTOM MANAGEMENT

The medications used to treat pain and symptoms at the end of life are common tools in the armamentarium of any intensivist. When goals of care shift to comfort rather than life prolongation, medications may be titrated and escalated differently than in other patients in the ICU. The most com mon medications used at the end of life are opioids, fol lowed by benzodiazepine, barbiturates, propofol, ketamine,

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