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Intensive Care Med DOI 10.1007/s00134-013-3153-z REVIEW

Kathleen Puntillo in the ICU: relief of , Judith Eve Nelson David Weissman dyspnea, and —A report Randall Curtis Stefanie Weiss from the IPAL-ICU Advisory Board Jennifer Frontera Michelle Gabriel Ross Hays Dana Lustbader Anne Mosenthal Colleen Mulkerin Daniel Ray Rick Bassett Renee Boss Karen Brasel Margaret Campbell

D. Ray cannot report symptoms verbally or Received: 1 August 2013 Lehigh Valley Health Network, Allentown, Accepted: 31 October 2013 non-verbally. The Respiratory Dis- PA, USA tress Observation Scale is the only Springer-Verlag Berlin Heidelberg and known behavioral scale for assessment ESICM 2013 R. Bassett St. Luke’s , Boise, ID, USA of dyspnea, and thirst is evaluated by patient self-report using an 0–10 NRS. K. Puntillo R. Boss remain the mainstay for pain University of California at San Francisco, Johns Hopkins University School of management, and all available intra- San Francisco, CA, USA , Baltimore, MD, USA venous opioids, when titrated to similar pain intensity end points, are J. E. Nelson ()) Á S. Weiss M. Campbell Wayne State University College of equally effective. Dyspnea is treated Icahn School of Medicine at Mount Sinai, (with or without invasive or noninva- New York, NY, USA , Detroit, MI, USA e-mail: [email protected] sive mechanical ventilation) by optimizing the underlying etiological D. Weissman Á K. Brasel Abstract Purpose: Pain, dyspnea, condition, patient positioning and, Medical College of Wisconsin, Milwaukee, and thirst are three of the most pre- sometimes, supplemental oxygen. WI, USA valent, intense, and distressing Several oral interventions are recom- symptoms of intensive care unit (ICU) mended to alleviate thirst. R. Curtis Á R. Hays patients. In this report, the interdisci- Systematized improvement efforts University of Washington, Seattle, WA, plinary Advisory Board of the USA addressing symptom management and Improving Palliative Care in the assessment can be implemented in J. Frontera ICU(IPAL-ICU) Project brings toge- ICUs. Conclusions: Relief of symp- Cleveland , Cleveland, OH, USA ther expertise in both critical care and tom distress is a key component of palliative care along with current critical care for all ICU patients, M. Gabriel information to address challenges in regardless of condition or prognosis. Veteran’s Administration Palo Alto, Palo assessment and management. Meth- Evidence-based approaches for Alto, CA, USA ods: We conducted a comprehensive assessment and treatment together review of literature focusing on inten- D. Lustbader with well-designed work systems can North Shore-Long Island Jewish Health sive care and palliative care research help ensure comfort and related System, Hyde Park, NY, USA related to palliation of pain, dyspnea, favorable outcomes for the critically and thirst. Results: Evidence-based ill. A. Mosenthal methods to assess pain are the enlarged University Medical and Dental of New 0–10 Numeric Rating Scale (NRS) for Keywords Pain Á Dyspnea Á Thirst Á Jersey, Newark, NJ, USA ICU patients able to self-report and the Palliation Critical Care Pain Observation Tool or C. Mulkerin Hartford Hospital, Hartford, CT, USA Behavior for patients who Introduction are among the most prevalent and distressing physical symptoms experienced by critically ill patients who can Critical illness and its management in the intensive care provide a symptom self-report. In a survey from the early unit (ICU) present special challenges for control of pain 1990s, 70 % of patients recalled pain (rated as moderate or and other symptoms that cause patient distress. Many severe by 63 %) during treatment in medical and surgical patients cannot provide self-reports, the gold standard of ICUs [10]. Findings of a more recent study [11]were symptom information, in real time. Interventions used to strikingly similar: 77 % of patients transferred from cardiac diagnose and treat critical illness are themselves common ICUs recalled pain, and 64 % of them rated the pain sources of symptom distress, as are routine and nonin- as moderate or severe. In a study of critically ill cancer vasive aspects of patient care such as turning. Treatments patients receiving ICU care, 56 % of those who could self- to relieve symptoms must take account of the complex report symptoms experienced moderate or severe pain, pharmacologic and physiologic issues that accompany while 34 and 71 % reported dyspnea and unsatisfied thirst, multiple failures. At the same time, relief of respectively, at these levels [12]. In another recent study, symptom distress is a foundational aspect of palliative more than 400 interviews with 171 critically ill patients at care, which is an integral component of comprehensive high risk of dying revealed pain in 40 %, dyspnea in 44 %, critical care for all ICU patients, from the time of and thirst in 71 % of these assessments [13]. A study admission, regardless of prognosis [1, 2]. Evidence-based focusing on patients receiving mechanical ventilation strategies for symptom assessment and management can showed that almost half of patients experienced dyspnea, not only promote patient comfort in the ICU but help which was significantly associated with anxiety [14]. The modulate the stress response, with potential physiologic contribution of diagnostic and treatment-related procedures benefits [3–5]. When knowledge and skill are applied in a to pain and other in the ICU has been demonstrated systematic effort, symptom relief can be fully consistent in major studies in the USA and elsewhere. Evaluating more with restorative treatment of critical illness [6]. than 6,000 patients in 167 ICUs, the Thunder Project II Expert guidelines are available to assist in the man- examined the painfulness of turning, tracheal suctioning, agement of pain [7] and dyspnea [8, 9], but additional non- care, wound drain removal, central line empirical evidence to support clinical care is needed, and insertion, and femoral sheath removal [15]. The most wide variation in practice is common. Meanwhile, the painful procedure for adults was turning. Post-cardiac and high prevalence, frequency, and intensity of other dis- abdominal surgery ICU patients reported moderate to severe tressing physical symptoms, such as thirst, and pain associated with endotracheal (ET) suctioning and/or psychological symptoms, have come into clearer view chest tube removal [16]. Moderate to severe pain has been recently, but without development and rigorous testing of reported by over 30 % of cancer patients who underwent the palliative interventions. The Improving Palliative Care in following ICU procedures: ET suctioning, turning, arterial the ICU (IPAL-ICU) Project, sponsored by the National blood gas puncture, arterial catheter insertion, central Institutes of Health and the Center to Advance Palliative catheter insertion, or peripheral intravenous (IV) insertion Care, shares technical assistance, evidence, and tools to [12]. The symptom experience of cognitively impaired integrate palliative care and intensive care successfully patients is less well understood [17]. from the onset of critical illness for all ICU patients, including those pursuing intensive to prolong life and restore baseline health. In this review, the inter- disciplinary IPAL-ICU Advisory Board brings together What are key elements necessary to assess the combined expertise of its members in palliative care symptoms in the ICU? and intensive care to address challenges in assessment and management of pain, dyspnea, and thirst during critical The cornerstone of effective symptom control is system- illness. We focus on the following questions: (1) What are atic symptom assessment. Ideally, symptoms are reported key elements necessary to assess these three common and rated by patients themselves, using a tool that is symptoms in the ICU? (2) What are optimal strategies for sufficiently simple and brief while providing adequate managing these symptoms during critical illness? (3) How information for clinical use. Below is a summary of can symptom care be systematized for improvement? approaches for ICU patients who can report their symp- toms, either verbally or non-verbally, and for non- communicative patients.

What are the most prevalent and distressing symptoms experienced by critically ill patients? Assessment approaches for communicative patients

Over a period spanning two decades, studies conducted in Table 1 presents symptom assessment tools for use with various ICU settings confirm that pain, dyspnea, and thirst ICU patients who can communicate verbally (by stating Table 1 Symptom assessment scales and their feasibility for self-reporting ICU patients

Type of instrument Description Comments

Self-report—unidimensional 0–10 numeric rating scale (NRS) Higher numbers indicate greater pain (or dyspnea, or pain, thirst, or dyspnea scale thirst) intensity. Example: 0 = no pain and 10 = worst possible pain. NRS has both construct [98, 99] and concurrent validity [98, 100] A 0–10 horizontal, visually enlarged laminated NRS for pain is most feasible and valid for ICU patients [22] Self-report—unidimensional 0–10 cm visual analog scale (VAS) A 10-cm line, with anchors at either end. Example: one pain or dyspnea scale end is marked ‘‘no pain’’ and the other end is marked ‘‘pain as bad as it could be’’ or ‘‘the worst imaginable pain’’. The patient makes a vertical line through the horizontal 10-cm line to indicate his or her pain intensity. The clinician then measures from the left of the horizontal line to the patient’s vertical line with a ruler and assigns a score. Difficult for many patients to understand and use Self-report body outline Identifies pain location. Diagram of front Patient is able to point to, or mark, the place or places on diagram pain scale and back of a ‘‘neutral’’ body divided the diagram where pain is felt. Has been used with into body sections ICU patients [19] Self-report—multidimensional McGill Pain Questionnaire-Short Form Scale with 11 sensory (such as sharp or throbbing) and pain scale (MPQ-SF) four affective (such as fearful or sickening) words. MPQ-SF also has a VAS and a verbal scale. The 15-word scale has been used in ICU patients [19] Self-report—multiple Condensed Form of the Memorial Measures a diverse group of symptoms. Has been used symptoms scale Symptom Assessment Scale—MSAS with critically ill patients [101] [24] Self-report—multiple Edmonton Symptom Assessment Scale Measures a diverse group of symptoms. Has been used symptoms scale [25] with critically ill patients [12] Self-report—multiple 10-item symptom assessment scale Modification of MSAS and Edmonton. Validated in ICU symptoms scale patients [13] their answers) or non-verbally (by pointing to numbers or having them point to one of these short symptom word words that rate or describe their pain or by pointing to a lists or helping them to localize their pain by offering body outline diagram to localize their pain). Owing to its body outline diagrams and asking patients to point to the simplicity, a 0–10 Numeric Rating Scale (NRS), with place(s) where they are feeling pain [19]. Speech lan- anchor words at each end that identify extremes of guage pathologists can help augment the patient’s ability severity, is recommended for assessing dyspnea in to communicate and to assist communication through patients with advanced illness [18]. The NRS has also alternative approaches [26]. Such strategies include been used frequently to measure the intensity and distress alphabet and number boards, electronic speech-generating of pain [15, 19, 20] and thirst/dry mouth [21]; patients can devices, or a touch screen requiring minimal physical say or point to a number that approximates symptom pressure to activate message buttons. severity. A 0–10 visually enlarged, horizontal NRS was found to be the most valid and feasible of five pain intensity rating scales tested in over 100 self-reporting Assessment approaches for non-communicative ICU patients [22]. A vertical visual analog scale (VAS) patients was preferred by patients over a horizontal VAS for reporting dyspnea [23]. Like an NRS, a VAS allows for Three approaches have been used to help understand the measurement of symptom severity but the VAS is difficult experience of patients who cannot report their symptoms for many patients in the ICU to understand and use. verbally or non-verbally: (1) behavioral assessment; (2) The Condensed Form of the Memorial Symptom proxy assessment; and (3) presumption of symptom dis- Assessment Scale [24] and the Edmonton Symptom tress in situations in which communicative patients Assessment Scale [25] are tools that allow for verbal or typically report such distress. non-verbal patient reports by which a diverse group of physical symptoms including pain and dyspnea as well as psychological symptoms can be measured. Recently, a Behavioral symptom assessment 10-item multi-symptom scale was validated in a large group of self-reporting ICU patients [13]. Clinicians can Important advances have been made in development of provide patients opportunities to report symptoms by tools based on patient behaviors. The Behavior Pain Scale (BPS) [27] and the Critical Care Pain help to verify the presence of pain [38, 39]. If behaviors Observation Tool (CPOT) [28] have good psychometric indicating pain persist and no other cause for the behav- properties and are recommended for use with adult ICU iors has been identified, the initial dose can be increased. patients excluding those with [7]. All such Alternatively, if pain-related behaviors seem to decrease tools must be used cautiously, since the findings are an in response to the , further interventions, such as indirect representation of a patient’s perceptual experi- scheduled analgesic dosing, can be planned. The same ence. Investigators validated specific procedure-related approach can be applied to observed respiratory distress pain behaviors in a large study of procedural pain, with using opioids. the most frequent being grimacing, rigidity, wincing, shutting of eyes, verbalization, moaning, and clenching of fists [29]. The Respiratory Distress Observation Scale (RDOS) is What are current strategies for managing symptoms the only known behavioral scale for assessment of dysp- during critical illness? nea. RDOS includes eight observer-rated parameters: heart rate, respiratory rate, accessory muscle use, para- Pain doxical breathing pattern, restlessness, grunting at end- expiration, nasal flaring, and a fearful facial display. Each Treatments to relieve symptoms must take into account parameter is scored on an ordinal scale from 0 to 2 points the complex pharmacologic and physiologic issues that and the points are summed. Behavior variables that accompany multiple organ failures. Concerns about sec- comprise the RDOS were identified from videotaping ondary effects of certain treatments, including mechanically ventilated patients undergoing a failed hypotension, sedation, respiratory depression, delirium, ventilator weaning trial and experiencing dyspnea [30]. and other alterations of consciousness, further complicate Construct, convergent, and discriminant validity have patient management. been demonstrated for this tool, as have internal consis- Opioids remain the primary medications to manage tency and inter-rater reliability [31, 32]. pain in ICU patients [40]. Recent guidelines from the Society of Critical Care Medicine (SCCM) [7] recom- mend intravenously administered opioids as the drug class Proxy symptom assessment of choice to treat non-neuropathic pain in critically ill patients. These guidelines note that all available intrave- The use of symptom reports from surrogates, such as nously administered opioids, when titrated to similar pain family members, or bedside clinicians, remains contro- intensity end points, are equally effective, and the optimal versial. In some studies, patients rank their symptoms choice of and the dosing regimen used for an higher than proxy reporters [33, 34], while in other reports individual patient depend on many factors including age, the opposite is true [35, 36]. Recently, the agreement underlying comorbidities/end-organ function, and the between ICU patients and their family members on the chosen opioid’s pharmacokinetic and pharmacodynamic distress of patient pain, dyspnea, restlessness, fear, and properties. Although some opioid (e.g., thirst was demonstrated to be moderately strong [37]. sedation) tend to abate with continued treatment, consti- Overall, data suggest that proxy reporters can help iden- pation is the most common persistent . Thus, tify symptoms that might be distressing for the patient. In except in the face of bowel obstruction, diarrhea, or addition, although evidence remains limited, proxy data another contraindication, a bowel regimen with a stimu- may be useful for trending symptom distress over time. lant (e.g., senna) or osmotic (e.g., lactulose) laxative must be prescribed when sustained opioid dosing is initiated. Tracking bowel function is a basic component of ICU Assume symptom presence under certain circumstances . Table 2 summarizes key elements of using opioids for critically ill patients. When patients are unable to self-report, and unable to Non-opioid can be used in the ICU demonstrate symptom-related behaviors (such as when including orally or intravenously administered acetami- chemically paralyzed), clinicians can use their experience nophen [41]; intravenously administered ketamine [42]; and judgment to identify possible sources of symptom intravenously administered nefopam [43, 44] (thought to distress. The assumption that the patient is experiencing inhibit reuptake of dopamine, norepinephrine, and sero- distress from pain, thirst, or dyspnea given the sur- tonin; used primarily in Europe); and orally, rounding circumstances may lead clinicians to further intravenously, and rectally administered cyclooxygenase attempts to determine the presence of the symptom and inhibitors [45], although the last of these are limited by address it appropriately. An analgesic trial, starting with a their side effect profile. Use of these medications in low dose fast-acting opioid (e.g., ), followed by conjunction with opioids may decrease the overall quan- observation of the patient for pain-related behaviors, may tity of opioids administered and the incidence and severity Table 2 Key elements of opioid use for ICU patients

Element Key point

Opioid dosing ICU clinicians responsible for should have knowledge of opioid dosing Dosing regimens should be based on a risks/benefits ratio for an individual patient [46] There is no maximum dose or duration of effect; these must be individualized [46] The ‘‘normal dose’’ for an individual patient is that which adequately relieves pain without unacceptable adverse effects [51] Opioid administration The preferred mode of initial is rapid titration of opioids with small incremental IV doses [46] Both remifentanil and sufentanil can be considered for use since both are short-acting opioids and may decrease the duration of mechanical ventilation and ICU length of stay [102] and improve procedural pain management [103] Dose and rate-related release does not occur with fentanyl analogues and can be limited by slowing the rate of IV administration of opioids [46] has unpredictable and pharmacodynamics in -naı¨ve patients. The patient’s Q–T interval (corrected) of the electrocardiographic tracing should be monitored carefully if methadone is used at all [46] Opioids–other It is necessary to institute a bowel regimen with stimulant or osmotic laxative in all patients receiving sustained considerations opioid administration unless there are contraindications such as small bowel obstruction [46] Use of opioids in liver failure can be complicated since most opioids are at least partially metabolized in the liver, reducing opioid . Fentanyl may be preferred opioid in liver failure although its half-life is prolonged with repeated dosing or use of high doses. Use opioids cautiously in patient with end-stage liver . Longer dosing intervals may be needed [104] Use of opioids in renal failure is associated with complex drug absorption, metabolism, and renal clearance. Meperidine has been removed from many hospital formularies and, even if available, potential toxicity contraindicates its use in renal failure. Use of and is not recommended. should be used cautiously; an active metabolite can accumulate between dialysis treatments. Fentanyl and methadone are relatively safe in renal failure since they have no active metabolites. However, neither is removed by dialysis [105] Opioids, especially when used chronically or in patients with renal failure, electrolyte disturbances, and , may cause neuroexcitatory effects, such as myoclonus [106]. Myoclonus may resolve over a few days with decrease in opioid dose. Myoclonus, especially if mild, should not interfere with good pain control. Rotating opioid to a lower dose of another opioid with a different structure may reduce myoclonus within 24 h. Fentanyl might be a better choice in this case since it has no active metabolites [107] Certain opioids such as fentanyl distribute in fat which can prolong the opioid effects of opioid-related side effects [7]. All non-opioid analge- receiving ketamine may experience psychotomimetic side sics should be used with caution because of drug-specific effects (dysphoria, nightmares, hallucinations), especially toxicities that may affect end-organ function [46]. For at higher ketamine doses. There is limited research on the patients with neuropathic pain, and carbam- efficacy of regional anesthetics in ICU patients, although azepine can be considered [47, 48]. Both are categorized thoracic epidural anaesthesia/analgesia is recommended as antiepileptic and antihyperalgesic drugs, and both have by the American College of Critical Care Medicine for been tested in ICU patients. Newer drugs for neuropathic consideration for postoperative pain in patients undergo- pain such as pregabalin, lamictal, trileptal, duloxetine, and ing abdominal aortic surgery [7]. venlafaxine require further testing during critical illness. Treating pain in the presence of physiologic instability Intravenously administered acetaminophen is now is an ongoing concern of ICU clinicians. Fears of hypo- approved for use in the USA. Its safety and effectiveness tension, respiratory depression, sedation, and addiction as an adjunct to opioids have been demonstrated in ICU are often exaggerated but may lead to reluc- patients after major general [41] and , but tance to prescribe appropriate analgesia and to it may not be necessary unless enteral administration is administration of suboptimal doses by nurses [52–55]. contraindicated [49]. Ketamine, an anesthetic and anal- Clinicians should not allow pain or other distressing gesic agent, has been used in ICU patients to help prevent symptoms to persist as a way to help maintain blood or reduce opioid tolerance and to provide pain relief, pressure and/or stimulate respiratory effort. Clinicians especially when pain is refractory to opioids and other should use all ICU resources (interdisciplinary team along agents [50, 51]. Ketamine is an N-methyl-D-aspartate/ with patient and family input) and seek consultative glutamate receptor (NMDA) antagonist that interferes advice if necessary to find an appropriate combination of with the normal excitatory effects of glutamate and symptom relief and physiologic stability in the context of aspartate and also interacts with opioid receptors [51]. the patient’s goals of care [5]. Preventing pain could Sub-anesthetic doses of ketamine can be administered actually be associated with better control of the acute with opioids to help reduce the overall opioid dose [51]. stress response in patients which could, in turn, increase With or without coadministration of opioids, patients physiological stability. Non-pharmacologic interventions for pain manage- Positioning can be an important non-pharmacologic ment, such as , , and relaxation treatment. For example, dyspnea in COPD can be reduced techniques, cost little and are safe and easy to provide. by upright positioning with arms elevated on pillows or a However, the effectiveness of non-pharmacologic inter- bedside table [62, 63]. In unilateral lung disease a side- ventions for pain in ICU patients is not yet clearly lying position may be optimal, with the ‘‘good’’ lung up established by empirical evidence [46, 56]. or down to increase perfusion and/or ventilation. Using More than a decade ago, guidelines were published for the patient as his/her own control and measuring dyspnea management of acute and procedure-related pain [57]. or respiratory distress in various positions will help to Simple pharmacologic and non-pharmacologic interven- identify the best position. Patient activity, whether active tions exist to decrease such pain. Still, few patients or passive, increases oxygen consumption that may lead undergoing procedures receive a specific intervention for to dyspnea. Since nurses coordinate most patient care in procedural pain [40]. ICU clinicians should be prepared to the ICU, their input is essential in determining timing of premedicate even for procedures that can be completed activity to minimize or prevent dyspnea. quickly, such as chest tube or sheath removal, or for Oxygen is considered standard therapy for dyspnea in routine procedures (such as turning or bathing) that are patients with hypoxemia [64, 65], but robust data are painful for many patients. Opioids and/or non-opioids lacking and no predictable relationship has been found with rapid onset and offset, augmented by relaxation, between the degree of hypoxemia and the symptomatic visualization, or other techniques, can be used to prevent response to supplemental oxygen [66, 67]. No benefit or decrease procedural pain. from oxygen compared to medical air was found in a study of patients with advanced lung disease who were not hypoxemic [68]. Patients who were near and at Dyspnea risk for dyspnea remained comfortable without oxygen [69]. A fan directed at the patient’s face may provide Dyspnea is treated by optimizing the underlying etiolog- relief [70], although use in the ICU may be limited by ical condition, such as with inotropes and for bioengineering restrictions. heart failure, along with drug and non-drug treatments. Opioids are the mainstay of pharmacological man- Mechanical ventilation, invasive or noninvasive, can agement of dyspnea that is refractory to disease- reduce dyspnea from respiratory failure, but may not be modifying and/or non-pharmacologic symptom treatment, appropriate for some patients in light of risks and burdens and their effectiveness has been demonstrated in numer- to the patient, and some mechanically ventilated patients ous clinical trials [54, 55]. The doses of opioids for acute experience dyspnea [14]. The use of noninvasive venti- dyspnea exacerbations are less well known than those lation (NIV) for symptom palliation in patients forgoing used to treat acute pain. ‘‘Low and slow’’ intravenous invasive mechanical ventilation was addressed by a task titration of an immediate-release opioid, repeated every force of the SCCM [58]. Although NIV can be an 15 min, should be provided until the patient reports or effective treatment for acute respiratory failure associated displays relief. Around the clock dosing may be best if the with exacerbation of obstructive lung disease, cardiogenic patient has dyspnea continuously or at rest, but with pro re pulmonary edema, neuromuscular disease, and certain nata (prn) dosing for episodic dyspnea [71]. Benzodi- other conditions, effectiveness for relief of dyspnea is less azepines have not generally been effective as a primary well established. NIV was more effective than oxygen in treatment for dyspnea [72]. The addition of an adjunctive reducing dyspnea and the need for morphine in a study of benzodiazepine to the opioid regimen has been successful patients with solid tumors and respiratory failure, partic- in patients with advanced COPD [73, 74]. As with opi- ularly those with hypercarbia; however, NIV was oids, these agents should be titrated to effect. discontinued in 7 % of the study group owing to patient intolerance [59]. In a descriptive study of other outcomes of NIV in patients with do-not-intubate directives, dysp- Thirst and xerostomia nea was not measured; 10 % of these patients requested discontinuation of NIV and 76 % experienced disruption Several methods of alleviating thirst and xerostomia (dry of sleep quality, as evaluated by nurses [60, 61]. As stated mouth) have been identified. Topical products that con- by the SCCM’s task force, the appropriate end point for tain olive oil, betaine, and xylitol, artificial saliva, and use of NIV with a critically ill patient whose treatment is salivary flow stimulants have been effective [75]. The focused exclusively on comfort is symptom relief, while effectiveness of frozen gauze pads with normal saline, failure to improve or distress warrant discontinuation of wet gauze, or ice was documented in post-laparoscopic NIV [58]. Some patients will not want to undergo any cholecystectomy patients [76]; patients receiving frozen form of mechanical ventilation and the treatment of gauze or ice reported significantly less thirst than patients dyspnea will rely on drug and non-drug treatments (see receiving wet gauze pads. These interventions have not Table 3). been specifically tested in ICU patients. A randomized Table 3 Dyspnea interventions, mode of action, and rationale

Intervention Dose Mode of action Rationale

Optimal positioning, usually Whenever patient reports dyspnea Increases pulmonary volume Increases air exchange which upright with arms elevated and or displays respiratory distress capacity may improve oxygenation supported [62, 63] and carbon dioxide clearance and reduce inspiratory effort Balance rest with activity Guided by dyspnea/respiratory Decreases excessive oxygen Prevents hypoxemia Space nursing care distress consumption Oxygen as indicated by goals of Variable, guided by goals of Improves the partial pressure of Treats hypoxemia therapy; not useful in therapy and patient oxygen; reduces lactic normoxemia or when the patient characteristics acidemia is near death and in no distress [8, 68, 69] Cold cloth on face [108] As needed Trigeminal nerve stimulation; Anecdotal reports of patient action on dyspnea unknown relief; inexpensive; easy to perform Opioids, such as morphine or Low doses titrated to the patient’s Uncertain direct effect; Strong evidence-base supports fentanyl [54] report of dyspnea or display of reduced brainstem sensitivity effectiveness dyspnea behaviors is effective; to oxygen and carbon oral or parenteral; no evidence to dioxide; altered central support inhaled administration; nervous no evidence on dosing regimens Benzodiazepines, such as Low doses titrated to the patient’s Anxiolysis Fear or anxiety often lorazepam or [73] report of dyspnea or display of accompanies dyspnea dyspnea behaviors; no evidence for benzodiazepine regimens trial was recently completed in ICU patients to test the a summary of key steps to assess and manage thirst in the effects of sprays of cold sterile water, swabs of cold ICU patient. sterile water, and use of a mouth and lip moisturizer [21]. This ‘‘bundle’’ of thirst interventions significantly decreased thirst intensity and distress in a group of ICU Incorporating family members in symptom patients when compared to patients who did not receive management the intervention. Use of lemon–glycerin swabs is not recommended because they produce an acid pH [77], dry Family members may want to participate in providing oral tissues [78], cause irreversible enamel softening and symptom care as a way of feeling connected to their erosion [79], and exhaust salivary mechanisms over time, critically ill loved one. Most family members want to be leading to increased xerostomia [80]. For non-intubated with the patient [82] and to know about the patient’s patients receiving high flow oxygen therapy, the use of condition and treatments [83]; patients value this [1]. heated humidifiers versus bubble humidifiers significantly Some seek directions as to what they can do at the bedside lowered mouth and throat dryness [81]. Table 4 provides [83]. In a survey of 20 relatives and 27 ICU nurses [84], a high proportion of both agreed that families can be involved in physical care of the patient including mouth Table 4 Key steps to assess and manage thirst in ICU patients and eye care, bed bathing, turning, and positioning the patient. ICU family members have identified themselves 1 Conduct regular thirst assessments in patients able to self-report 2 Examine the mouth and tongue for dryness and cracking or as providing care to their loved ones including massaging, , as indicators of thirst/dryness repositioning, distracting, and assisting with activities of 3 Recognize the risk profile for patient thirst including NPO status, daily living [85]. Thus, family members can be queried and administration of medications and opioids about their interest in assisting with pain, dyspnea, and 4 Assume that the patient is experiencing thirst 5 Do frequent mouth care thirst-relieving measures. For example, they might assist 6 Use water-soaked gauzes, water sprays, and ice chips frequently in evaluating patients’ responses to procedures and when permissible activities that can cause pain (such as turning, suctioning, 7 Consider the use of artificial saliva and mobilization) [15] and report their observations to the 8 Consider the use of heated humidifiers in patients with high-flow oxygen therapy ICU team. They might help the patient find an optimal 9 Evaluate and document the effectiveness of the thirst position and use a fan that reduces dyspnea. Family interventions members could provide simple mouth care and/or ice chips to relieve thirst if not contraindicated. While not all NPO nil per os family members want to provide direct care [86], inclu- consistently available at the bedside), the accountability sion of interested families in providing patient care can provided by continuing measurement and feedback of have positive effects for patients and family members performance, and the attitudinal shift about analgesic alike. Family members who were invited to provide care practice that was fostered across the ICU team. were almost twice as likely to perceive more respect, In another study [6], nurses reported pain assessments increased collaboration, greater support, and higher on daily rounds with , and alerted the physician overall family-centered care (ORs 1.6–1.9) from ICU promptly when a patient’s pain or agitation exceeded staff than control group families [87]. specified levels. Attending physicians, house officers, and nurses received verbal and written educational materials, such as pocket cards with assessment scales, and a lam- Involvement of palliative care specialists in symptom inated poster of the pain scale was placed on the wall of management each patient room. After implementation, the investiga- tors observed significant decreases in the incidence of Specialist palliative care consultation is a consideration pain (63 to 42 %) and agitation (29 to 12 %) along with a when the patient’s symptoms are difficult to manage, no decrease in reports of severe pain and agitation. The matter what the diagnosis or prognosis. For example, duration of mechanical ventilation and rate of nosocomial patients who require high doses of opioids pose a chal- were both significantly reduced in the inter- lenge for ICU clinicians who may have little experience vention group, and the proportion of nurses who were with complex and escalating dosing regimens or side satisfied with the management of pain and sedation was effect management. Choosing optimal primary and dramatically increased. Although focused primarily on adjunctive therapies in the context of liver or renal failure symptom assessment, the interdisciplinary approach of is another example of symptom care that may be this initiative appeared to enhance the timeliness of enhanced by specialist palliative care consultation. physicians’ responses and allowed closer titration of analgesics and sedatives, including both increases and decreases in dosing, based on improvements in the nurses’ assessments. How can symptom care be systematized An improvement effort addressing symptom manage- for improvement? ment and assessment can be organized in the same way that has been recommended for improving ICU palliative The SCCM has published clinical practice guidelines care and other areas of critical care practice [81, 82, 90]. based on best available evidence for pain, agitation, and Key elements, which we have previously described [90], delirium [7]. Yet, as the SCCM acknowledged, ‘‘closing are set forth in Table 5. Success in achieving organiza- the gap between the evidence highlighted in these tional change is more likely if supported by ‘‘champions’’, guidelines and ICU practice will be a significant chal- who ideally are individuals with authority and respect in lenge for ICU clinicians and is best accomplished using a the ICU and institution. At the same time, enduring multifaceted, interdisciplinary approach’’ [7]. In some change appears to depend on design of work systems and ICUs, structured approaches have been used with success processes that facilitate delivery of high-quality care [52, to improve pain assessment and treatment [6, 88, 89]. For 91]. Examples include the use of ‘‘preprinted and/or example, one ICU [89] tested a group of interventions to computerized protocols and order forms, and quality ICU improve pain: (1) clinician education on the importance rounds checklists to facilitate the use of pain…manage- of standardizing methods of pain evaluation and treat- ment guidelines…’’, as recently recommended by SCCM ment; (2) incorporation in every bedside and others [52, 92]. As another example that is analogous of a VAS for pain assessment; (3) implementation of to use of preoperative ‘‘time outs’’ to promote safety, a house staff reporting of pain scores on daily ICU rounds; protocol for an invasive procedure could require that both (4) interdisciplinary collaboration to develop a plan of the nurse and physician agree on the adequacy of pre- care when pain scores above a specified threshold indi- emptive analgesia before proceeding. The regular agenda cated an adverse event comparable to a medication error. for rounds might be modified to begin with presentation The percentage of 4-h patient–nurse intervals in which of symptom scores and related issues [6], such as the nurses documented pain scores increased from 42 to targeted level of symptom control, with documentation on 71 %, and the percentage of pain scores 3 or less on a a daily goals sheet [93]. If a palliative care consultant or scale from 0 (no pain) to 10 (maximum pain) increased service is available in the hospital, the ICU might from 59 to 97 %. The investigators emphasized the con- implement a screen to identify patients with complex or tribution of the ICU staff to the development of the refractory symptom issues who could benefit from spe- specific interventions, the simplicity and feasibility of cialist input [94]. Inclusion of all disciplines in these interventions, the attention to work process effi- development of system and process supports is necessary. ciency (specifically, making the pain assessment tools Shadowing of clinicians during symptom assessment and Table 5 Key steps for organizing a symptom improvement initiative

Convene a project workgroup • Include representatives of stakeholder groups – e.g., ICU physician director, ICU nurse manager, nursing educator, , palliative care clinician if available • Engage hospital leadership if possible • Meet at least every other week Define the problem • Assess existing practices to identify opportunities and priorities for improvement – e.g., Review patients’ symptom ratings, HCAHPS survey responses, frequency of symptom assessment by staff, use of specific medications, assessment/management of side effects of symptom treatment (e.g., constipation) • Identify available resources to support the improvement effort – e.g., , quality monitoring staff, personnel, educational staff Prepare an action plan • Determine an aim that is specific, achievable, and time-bound – e.g., By 6 months from start, BX % of patients will have CY pain ratings above mild level • Identify changes in clinical practice and systems that can help achieve the desired aim – e.g., Standardize assessment tools for patients who can and cannot self-report symptoms; provide regular reporting of pain scores on interdisciplinary patient care rounds and daily goal sheets; introduce automatic bowel regimen order prompt for a patient receiving an opioid • Address the need for new documentation formats – e.g., Nurses’ symptom assessments imported into physician electronic progress note template and/or into weekly report for interdisciplinary review • Arrange for targeted education – e.g., Fast Facts (http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts) – ELNEC training materials (http://www.aacn.nche.edu/ELNEC/) – Selected references from IPAL-ICU Reference Library (http://www.capc.org/ipal/ipal-icu/reference-library/pain) • Plan for evaluation of progress toward specific target and overall goal – Choose measures and feedback strategy • Assign responsibility for action steps – e.g., Dr. X and Nurse Y will develop a bowel regimen, Dr. Y will revise physician documentation template, Nurse Educator will train staff for interdisciplinary rounds presentations, Dr. Z and Nurse W will compile data on quality measure Foster a supportive culture for sustainable change • Engage the entire interdisciplinary team in regular meetings to discuss • Initiative’s rationale, plan, and progress • Identify champions across disciplines • Deliver feedback constructively, with emphasis on successes • Make an analogy between inadequate symptom assessment and management and errors compromising patient safety HCAHPS hospital consumer assessment of healthcare providers and systems, ELNEC end-of-life nursing education consortium management processes can help identify obstacles and and family satisfaction with symptom treatment, ‘‘bearing suggest steps to a more efficient and effective process in mind that patients often report satisfaction with pain [95]. treatment despite experiencing severe pain, a high inci- dence of side effects, and inadequate pain treatment’’ [52]. This expert group also recommended surveying Measuring quality of care physicians and nurses for satisfaction to provide insight into aspects of care warranting further change. In choos- In parallel with processes of care designed to improve ing measures, ICUs should carefully consider feasibility symptom assessment and management, data should be of data collection, since few units will have resources for captured to assess the quality of care. Specified measures a complex or large-scale measurement effort, and most are available to evaluate the quality of care related to pain will have other improvement projects that compete for and dyspnea in the ICU (see Table 6). For example, the resource allocation. To reduce burden in their project to National Quality Measures Clearinghouse of the Agency improve pain assessment and management, leaders in one for Healthcare Research and Quality posted measures 0 ICU [89] limited data collection to a random subset of [2] focusing on the proportion of 4-h nurse–patient care ICU patients at selected intervals. In addition, while intervals in which pain is assessed. Measures of respira- ongoing evaluation is an essential component, measure- tory distress were proposed on the basis of literature ment alone will not improve care but must be coupled review and expert consensus by the Robert Wood Johnson with well-designed interventions to achieve better per- Foundation Critical Care Peer Workgroup [96]. A con- formance [97]. Finally, it is important to monitor for the sensus of experts convened by the American College of emergence of unintended adverse effects of new pro- Chest Physicians recommended periodic review of patient cesses of care [89], such as an unacceptable burden on Table 6 Examples of measures for symptom improvement initiative

Symptom/evaluation Measure Source

Pain assessment Percent of 4-h nurse–patient care intervalsa ICU Pain Assessment, Agency for Healthcare in which pain was assessed and Research and Quality—available at documentedb http://www.qualitymeasures.ahrq.gov/ content.aspx?id=28311&search= palliative?care Pain management Proportion of assessmentsa in which pain ICU Pain Management, Agency for Healthcare score B3 on 0–10 scale Research and Quality—available at http://www.qualitymeasures.ahrq.gov/ content.aspx?id=28312&search= palliative?care Pain management Proportion of ICU patients responding HCAHPS Hospital Survey, pain control usually or always to HCAHPS item 13, item—available at http://www.hcahpsonline. ‘‘how often was pain controlled?’’ org/files/HCAHPS%20V8.0%20 Appendix%20A%20-%20HCAHPS%20 Mail%20Survey%20Materials%20 (English)%20March%202013.pdf Pain management Proportion of ICU patients responding HCAHPS Hospital Survey, staff effort to help usually or always to HCAHPS item 14, with pain item—available at http://www. ‘‘how often did staff do everything they hcahpsonline.org/files/HCAHPS%20V8.0%20 could to help you with your pain?’’ Appendix%20A%20-%20HCAHPS%20 Mail%20Survey%20Materials%20 (English)%20March%202013.pdf Unintended consequences Bowel movement every day: yes/no [8] of pain management: Spontaneous respiratory rate [10: yes/no [109] constipation, respiratory Opioid dose: increased within last 24 h depression, opioid without apparent increase in pain: yes/no tolerance Dyspnea assessment Percent of 8-h patient–nurse intervals in Respiratory distress assessment—Robert which respiratory distress (for Wood Johnson Foundation Critical Care nonventilated patients) or patient– Workgroup [96] ventilator dyssynchrony (for ventilated patients) was assessed and documented Dyspnea management Treatment or management plan for Respiratory distress assessment—Robert respiratory distress (for nonventilated Wood Johnson Foundation Critical Care patients) or patient–ventilator Workgroup [96] dyssynchrony (for ventilated patients) [3 on 0–10 scale a Maximum 6/day b Intervals when patient is not present in the ICU or is asleep are excluded staff, or an increase in duration of mechanical ventilation, the specific communication and cognitive abilities of alterations in patient mental status, or constipation, that critically ill patients in order to gain as much knowledge might be thought to result from changes in symptom as possible of the patient’s experience. Treatment of pain, strategies. dyspnea, and thirst entails an array of techniques that must be appropriate to the source, or anticipated source, of the symptom, the condition of the patient, and the goals of care. The concerted, collaborative efforts of the entire Conclusion ICU clinical team—physicians, nurses, and therapists— aided by input and support from patients and families will An important goal for improving ICU palliative care is to help close the gap between evidence and practice for not only promote patient comfort but to support other treating distressing symptoms. favorable outcomes of intensive care that are associated with symptom control. Pain, dyspnea, and thirst are pre- Conflicts of interest On behalf of all authors, the corresponding valent symptoms that produce patient distress. We offer author states that there is no conflict of interest. valid and reliable symptom assessment methods to meet References

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