Rogers Textbook of Pediatric Intensive Care

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Section IV: Ethical and Palliative Concerns in the Care of the Critically Ill

dissociative anesthetic that also works via the NMDA recep tor and can therefore be a useful adjunct when opioids are not working, and even low doses can potentiate the opioid analgesic effect. At high doses, it has the potential to cause disturbing hallucinations. Nebulized opioids have been studied for a proposed ability to relieve dyspnea with fewer systemic side effects, 44 with most controlled trials showing little added benefit. In the ICU, most patients have intravenous access and there may be little reason to avoid systemic administration, but inhaled agents could be tried on a case-by-case basis. Sedatives Just as many ICU patients require sedation in order to toler ate ICU interventions and monitoring, many patients at the end of life require sedation for the management of symp toms. Low doses can often be used as an adjunct to relieve anxiety and allow for better pain control. Higher doses that diminish awareness may be necessary for intractable symp toms. Terminal sedation , or titration of medications to the point of unconsciousness at the end of life, is often discussed as a point of potential ethical controversy, yet palliative se dation may be a better descriptor. 45 In the ICU, sedation to unconsciousness merely represents one end of the spectrum of medication use that may be necessary for otherwise un controllable symptoms. Benzodiazepines are the most common sedative used at the end of life, 39 with intravenous dosing (either intermittently or by infusion) as the usual route in the ICU. Barbiturates are sometimes also used, but usually only when the goal is to di minish awareness. Other agents typically used for deep seda tion or anesthesia, such as propofol or dexmedetomidine, are rarely necessary but could be used to treat intractable suffering when other medications have failed. 46 Medications that do not treat suffering but have a sole intent of hastening death should be avoided. 40 Professional organizations have issued guidelines recommending against the use of neuromuscular blocking agents at the time of ventilator withdrawal. 47,48 Although a patient may appear “peaceful” if unable to move, neuromuscular blockade may make it impossible for the medical team to detect pain or dyspnea. In cases where ventilator withdrawal is being con sidered or discussed, infusions of neuromuscular blockers should be transitioned to an intermittent dosing regimen to avoid accumulation of drug that would take a significant amount of time to clear and a delay in being able to remove a ventilator. Nonpharmacologic Adjuncts For most ICU patients, intravenous opioids and benzodiaz epines will be the mainstay of symptom management. For pa tients who may have some awareness of their environment, attention to their surroundings can also help. Music, dimming the lights, encouraging parents to hold a child, or providing fa miliar objects can all be helpful. 43 Supplemental oxygen should be used if it seems to improve comfort, but is not necessary for hypoxemia if the patient is not distressed by it. Noninvasive ventilation is sometimes used after endotracheal extubation, often for those patients who are on such long-term support at home, or who may survive. If a decision has been made that the patient will not be reintubated, then the team should also choose a reasonable maximum pressure that will be used noninvasively to avoid escalating to high-enough pressures to cause discomfort.

LIMITATIONS ON ICU INTERVENTIONS

In cases where a disease process has been determined to be irreversible, or the burdens of continuing invasive interven tions offer little prospect of benefit in either survival or quality of life, a patient’s authorized decision maker and the medical team may decide that it is time to either limit further escalation of invasive therapies or to remove some interventions that are already in place. Goals may shift over time, and often many conversations between a family and clinicians are necessary to reach consensus on what goals are achievable and how to best reach them. 24,49 It is important for a team to work closely with a family to make sure that medically appropriate choices are being offered and to give a family time to understand the situation and trajectory of illness. Many factors could influ ence what goals are appropriate, including the likelihood of recovery from the illness or injury, length of time spent in the ICU, baseline level of functioning or quality of life, frequency of ICU admissions, whether interventions are causing pain and suffering, and the values of the patient and family. Resource availability for ongoing ICU or long-term support of the child may be a factor in some areas. Attention to language used when discussing withdrawal is important so that a family is not left believing that they “gave up” on their child or “pulled the plug.” The clinician should avoid saying that the plan is to “withdraw care” (because “care” will always be provided, whether an invasive treatment plan is in place or not), and focusing on comfort should never be phrased as “doing nothing.” Similarly, it is unfair to a fam ily for the ICU team to ask “Do you want us to do everything for your child?” 50 as many will rapidly default to saying yes to “everything” because it sounds like what one should do. Many families need reassurance from the physician that a focus on comfort can be what is best for their child and that they are good parents making loving decisions. A focus on what will be provided—comfort, care for the family, time to hold the child, etc.—is just as important as a focus on what will not be provided. Do Not Attempt Resuscitation Orders DNAR orders (formerly DNR orders) are unique in medicine in that they specify therapies or interventions that will not be performed. 51,52 They exist because the default assumption is that emergency interventions such as cardiopulmonary resus citation (CPR) and endotracheal intubation should be pro vided, unless a thoughtful decision has been made that they would not be beneficial or desired. The lay public may have an unrealistic expectation of how successful resuscitative ef forts are likely to be, 53 so a clinician should educate a patient and family about what benefits might be anticipated in that patient’s situation. Some centers are changing the terminology to “allow natural death” (AND) orders rather than DNAR as a way to focus on the positive aspects than on what will not be provided. 54 In discussing DNAR orders with families, it is better to focus on overall goals (eg, providing comfort, time at home, extending life, providing time to see if a situation can improve, gaining time for extended family to arrive) rather than run ning through a checklist of what interventions will or will not be provided. The clinician can then decide what interventions make sense in light of the goals. 55 Not all DNAR orders are the same—in some cases it makes sense to avoid CPR and de fibrillation, but to consider intubation and mechanical ventila tion. In other cases, it may be best to forego CPR, intubation, vasoactive medications, antibiotics, and almost all other

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