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Dyspnea Management Across the Palliative Care Continuum

Brennan, Caitlin W. PhD, RN; Mazanec, Polly PhD, ACNP, AOCN, FPCN

Journal of Hospice & Palliative Nursing: May-June 2011 - Volume 13 - Issue 3 - p 130-139
doi: 10.1097/NJH.0b013e3182148314
Article: Research and Practice:Partners in Care Series*

Dyspnea, or breathlessness, is a common symptom in patients with cancer, heart failure, and chronic lung diseases, such as chronic obstructive pulmonary disease. The symptom distress related to dyspnea can be quite debilitating and often severely impedes quality of life. Patients have used words such as "suffocation" to describe this complex, subjective, and distressing phenomenon. This article provides a summary of the state of the science of the clinical management of dyspnea across the palliative care continuum. The main finding of the review of the literature is that oral and parenteral administrations of morphine are the criterion standard for the pharmacological management of dyspnea. Responses to common myths are provided, along with a case study that highlights the relevant nursing implications in the clinical and home settings.

Caitlin W. Brennan, PhD, RN, is Postdoctoral Fellow, Veterans Affairs Quality Scholars Program, Louis Stokes Cleveland Veterans Affairs Medical Center; and MSN student Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH.

Polly Mazanec, PhD, ACNP, AOCN, FPCN, is Assistant Professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH.

Address correspondence to Caitlin W. Brennan, PhD, RN, Frances Payne Bolton School of Nursing, Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH 44106-4904 (cww2@case.edu).

The authors have no funding acknowledgements to report.

The authors declare no conflict of interest.

*This paper is part of our series which partners a new author with a senior author to provide an evidence based paper on a clinical topic in palliative nursing.

Imagine how you feel when you are standing in the back of a crowded elevator, bundled up in your winter coat, hat, and scarf. You feel as though you cannot breathe and you cannot wait to escape. Imagine the relief you feel when the elevator doors finally open and you are able to take a deep breath of fresh air. Now imagine feeling that way all the time, struggling to get relief, and not being about to get that deep breath of fresh air. Patients with dyspnea experience this symptom of air hunger and smothering. The nurse's role is to ameliorate this suffering and prevent recurrence of symptom distress.

Dyspnea is a complex symptom that involves an uncomfortable sensation related to breathing or an awareness of breathing, which can be highly distressing for both patients and caregivers. Dyspnea, or breathlessness, has been described as simply "difficulty breathing." However, from the perspective of a patient with dyspnea, it is likened to suffocating, or feeling like "a fish out of water."1,2 In severe cases, patients describe an intense fear of waking up with air hunger, of sensations of impending death, and fear of dying during the next episode.3

The American Thoracic Society defines dyspnea as "a term used to characterize a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity."4 The sensation of dyspnea is a subjective phenomenon with physical, psychological, social, and spiritual/existential contributors. Therefore, there is no objective method for measuring it, and much like pain, it is captured by patient report.5 Dyspnea can be acute, with a rapid and sudden onset requiring emergency care, or chronic, with a more gradual onset that worsens over time and causes a person to seek care when it interferes with normal activity.6 Schrijvers and van Fraeyenhove7 recommend thinking about dyspnea as a potential palliative care emergency, given that it can be life threatening and/or severely inhibit quality of life (QOL). These authors highlight that there can be physical, emotional, and existential contributors to symptoms that cause palliative care emergencies and that appropriate treatment should focus on symptom control and management, rather than cure.7

This article focuses on the progression of chronic dyspnea as a result of chronic illness, the effect of dyspnea on QOL, the state of the science for dyspnea treatment and management, and relevant nursing implications. In addition, this article applies the evidence to clinical practice at the bedside, including addressing common myths about the management of dyspnea and providing recommendations regarding how to respond to those myths. Recommendations are presented within the context of a case study of Mr A., a 69-year-old African American man with a history of chronic obstructive pulmonary disease (COPD), across his illness trajectory.

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PREVALENCE AND RISK FACTORS

Prevalence of dyspnea varies by diagnosis and underlying cause. It is commonly reported by persons with cancer, with or without lung involvement, persons with COPD, and persons with heart failure (HF).5 In a prospective survey of symptom distress and QOL in patients with advanced COPD, dyspnea was the most prevalent symptom, with 94% of participants reporting the symptom.8 In a similar study in patients with HF, 56% of participants reported dyspnea, which was the third most prevalent symptom, after lack of energy (66%) and dry mouth (62%).9 In the cancer population, prevalence of dyspnea ranges from 67% in the outpatient setting to 77% in the terminal phase of illness.10,11 Dyspnea varies in intensity throughout the underlying disease trajectory and generally worsens as a person approaches the end-of-life phase of his/her disease.12 Interestingly, in a study of palliative care patients, prevalence of dyspnea was significantly higher in patients who reported a depressed mood state compared with those without a depressed mood state (86% vs 72%, P = .02).13 Similarly, prevalence of dyspnea was significantly higher in patients with anxiety compared with those without anxiety (89% vs 68%, P < .001).13 The authors indicated that, while more research is needed to characterize the association between mood disorders and symptom expression, proper management of psychological distress will likely improve symptom expression and QOL.13

Prevalence of dyspnea is linked to a number of previous risk factors, such as a history of smoking, asthma, COPD, cardiac disease (especially HF), environmental exposures (asbestos, dust from coal, cotton, or grain), lung cancer, lung radiation, anxiety, fatigue, and low performance status, with higher prevalence in individuals with more risk factors.6 Patients who experience dyspnea are at higher risk for depression and have poorer health-related QOL.14,15 Most patients who report dyspnea also report pain and fatigue, regardless of their underlying diagnosis, and the intensity of dyspnea is significantly higher in patients closer to death.16,17 These prevalence statistics and risk factor data highlight that dyspnea is present in a variety of disease states at various stages of illness and is frequently associated with other psychological symptoms such as anxiety, pain, and depression.

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PATHOPHYSIOLOGY

The pathophysiology of dyspnea is multifactorial and includes neurophysiological and affective components.18,19 The neurophysiological component begins with chemoreceptor detection of hypoxia and/or hypercapnia, which stimulates the transmission of afferent nerve impulses to the central nervous system (CNS).5,19 In the CNS, these impulses are processed and trigger efferent nerve impulses to the chest wall and diaphragm and signal respirations to increase.5,19 Dyspnea is thought to occur when a mismatch between the afferent and efferent impulses exists, generally because of an inability of the respiratory muscles to respond to the outgoing motor command due in part to muscle weakness and/or hyperinflation.5,19 Increased ventilatory impedance and resistance, such as that which exist as a result of narrowed airways in asthma and COPD, are other contibutors to the pathophysiology of dyspnea.4,6 The affective component of dyspnea includes the "unpleasantness" or distress associated with the symptom, as well as emotions such as anxiety, anger, and depression that amplify the intensity of dyspnea and can lead to panic and overwhelming feelings of lack of control.18,19

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CONCEPTUAL MODEL

Because dyspnea is a multidimensional symptom, a multidimensional model is needed to identify underlying causes of dyspnea, target interventions, and implement a comprehensive patient- and family-focused plan of care. The City of Hope Quality of Life Model (Figure 1), which incorporates the physical, psychological, social, and spiritual contributors to QOL, is a useful framework for conducting a comprehensive, holistic assessment of patient and family well-being.22,23 It has been validated for use in the palliative care population and in specific cancer populations.20,21 In relation to dyspnea, the model serves as a reminder that dyspnea is not only a physical symptom, but also has the potential to contribute to psychological distress and to social QOL, especially if a person with dyspnea limits going outside his/her home or engaging in sexual activity because of the symptom. Lastly, the meaning of the dyspnea is important for understanding the impact of the symptom on a person's spiritual QOL. A person with uncontrolled dyspnea may question "Why me?" or feel hopeless. These conceptual dimensions provide a useful framework for questions the nurse can ask to assess the impact of dyspnea on patients' QOL (see Assessment).

FIGURE 1

FIGURE 1

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CASE STUDY, PART 1

Mr A. is admitted to the hospital with a new diagnosis of COPD, complicated by a community-acquired pneumonia, severe shortness of breath, fatigue, and anorexia. His vital signs on admission are temperature of 38°C; pulse, 100 beats/min; respiratory rate, 24 breaths/min; blood pressure, 135/86 mm Hg; and pulse oximetry, 92% on room air. The current treatment plan includes intravenously administered fluids and antibiotics, nebulizers, and bronchodilators. Mr A.'s health history includes hypercholesterolemia, hypertension, coronary artery disease, coronary artery bypass graft 4 years ago, smoking (three packs per day for 30 years, stopped 20 years ago), drinking alcohol socially, and no illicit drug use. Mr A. is married, has two grown sons, one of whom lives nearby, and has two grandsons ages 1 and 3 years. Mr A. is a retired auto worker and did mainly welding work, has been active in his church community, volunteers for the food bank, and is an avid golfer. Mr A.'s wife works part time as a librarian at the local library. The internal medicine service has consulted the palliative care advanced practice nurse (APN) for symptom management. The role of the APN is to thoroughly assess dyspnea intensity and burden to the patient, perform a complete history and physical, and make recommendations for management. The following is a summary of the current state of the science of each activity.

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Assessment

In the absence of a consensus statement with regard to specific quality standards for clinical dyspnea care, Mularski and colleagues24 recommended that routine documentation and regular reassessment of dyspnea occur. These authors also emphasized that measuring intensity of dyspnea and the level of distress to the patient is essential at each clinical encounter.24 Regular assessment of dyspnea that focuses on the patient's self-report of their experience of dyspnea, including the quality, intensity, and context (such as at rest, on exertion, or nocturnally) is recommended.6

There are a number of instruments available to measure dyspnea for both clinical and research purposes, with varying levels of reliability, validity, and ease of use. The Medical Research Council (MRC) dyspnea scale measures the extent to which breathlessness impairs mobility.6 Scoring on the MRC scale is based on patient self-selection of one of five grades that best represents their level of dyspnea, with higher grades indicating greater impact of dyspnea on activity (Table 1).28,29 The MRC has been in use for decades, has established reliability and validity, and can typically be completed in less than 1 minute in the clinical setting.6,29,30

TABLE 1

TABLE 1

In their systematic review of tools that measure breathlessness, Bausewein et al31 found that no single instrument exists that measures all dimensions of dyspnea and therefore recommended using combinations of assessment techniques, such as the unidimensional visual analog scale (VAS) to measure severity, along with multidimensional and/or disease-specific tools and/or qualitative interviews of the patient and family to measure the impact of the dyspnea on QOL. In another systematic review in the palliative care population, the authors found that the numeric rating scale (NRS) and the modified Borg Scale (in which patients select verbal descriptors of severity of breathlessness during exercise3) are suitable for measuring severity of breathlessness, while the Cancer Dyspnea Scale is appropriate for quality of breathlessness in cancer patients, and the dyspnea subscale of the Chronic Respiratory Questionnaire (CRQ-D) is best for measuring functional impairment caused by breathlessness.32 Although the CRQ-D is beneficial because of its patient-centeredness (patients select the five activities that are most important to them), a drawback of the tool in the clinical setting is that it takes 25 to 30 minutes to complete, which can be exhausting for patients experiencing dyspnea.

Of the aforementioned reliable and valid instruments available to measure dyspnea, the NRS is the most practical and feasible for use in the clinical setting.6 Because the NRS measures only severity, it is important for the nurse to ask patients the extent to which dyspnea interrupts normal activities and inhibits functioning and the level of distress it causes, the impact it has on family members and social interactions, and the meaning that is tied to the experience of the symptom.31 The MRC dyspnea scale is a useful tool for measuring the effect of dyspnea on activity level, while qualitative interview questions can elicit the impact of dyspnea on the patient's QOL. Assessment of dyspnea should occur with each clinical encounter, followed by reassessment after interventions to reduce dyspnea occur. In this way, initial and ongoing assessments of dyspnea guide clinical care and can be tracked and shared over time among clinicians. An example of the NRS is provided in Figure 2, along with examples of nursing assessment questions, which are guided by the City of Hope QOL Model. Although these questions have not undergone formal psychometric testing, they may be helpful to the nurse in the clinical setting.

FIGURE 2

FIGURE 2

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History and Physical

Taking a thorough history includes eliciting information about onset, aggravating/alleviating factors, response to medications, patient-rated intensity, and psychological contributors such as anxiety and depression.3 The history should also include use of the NRS and the MRC dyspnea scale and an assessment of the impact the dyspnea has on the patient's QOL through the qualitative interview questions presented in Figure 2. The focused examination of a patient with dyspnea includes evaluation of vital signs (temperature, blood pressure, pulse, respirations, and pulse oximetry), auscultation of lungs and heart, assessment of the presence of tactile fremitus, respiratory excursion, use of accessory muscles, elevated jugular venous pressure, and pulsus paradoxus, and performing chest percussion.3,6 Abnormal findings related to reduced tissue oxygenation include pallor; cyanosis of the nail beds, lips, and mucous membranes; clubbing of the digits; and mental status changes such as restlessness, anxiety, disorientation, and confusion.6

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Diagnostic Testing

Diagnostic testing such as chest radiograph is warranted in acute exacerbations of dyspnea to determine the presence of pneumothorax, pleural effusion, or pneumonia and may include computed tomography (CT) scans when cancer or tumor progression is suspected.6 Diagnosis and staging of COPD are made in part through pulmonary function tests that measure lung volumes and gas diffusion.6 Diagnostic testing is less warranted for chronic progression of dyspnea because no new information about the cause of the dyspnea is likely to be uncovered that would be useful for treatment decisions. Rather, a thorough history and physical examination that includes assessment of the patient's functionality and the patient's and family's goals of care will generally provide the most pertinent information for directing the focus of management of dyspnea.

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Evidence-Based Interventions/Management of Dyspnea

Pharmacological

In the clinical setting, pharmacological management of dyspnea often includes the use of oral, parenteral, or nebulized opioids, phenothiazines, benzodiazepines, corticosteroids, oxygen, and nebulized furosemide. An analysis of the evidence for use of each type of therapy is discussed below.

Systemic opioids are the criterion standard of pharmacological management of dyspnea and are successful in relieving both acute and chronic dyspnea.34 Opioid use early in the course of illness improves QOL and may prolong survival by reducing exhaustion and physical and psychological distress.3 In systematic review and meta-analysis of the management of dyspnea in cancer patients, Viola et al,34 found that oral or parenteral opioids are effective in relieving breathlessness. Importantly, the same authors found no evidence to support using the nebulized route to administer morphine for dyspnea.34 Nebulized fentanyl, which is lipophilic, may be beneficial, but more research is needed to confirm this hypothesis.35

There is a paucity of evidence to support the use of phenothiazines for the treatment of dyspnea. For example, Viola et al34 reviewed three randomized controlled trials (RCTs) that included a total of only 38 patients, and none included cancer patients. While one RCT demonstrated a small, significant benefit with promethazine compared with placebo on dyspnea and exercise tolerance, and another RCT demonstrated that morphine plus promethazine significantly improved exercise tolerance compared with placebo, the trials were conducted in 1981 and 1996 and included only 18 and 9 patients, respectively.34 Considering the small sample sizes of these trials and the fact that no recent studies have demonstrated a positive, significant improvement in dyspnea with promethazine on dyspnea, use of this drug is not recommended for the management of dyspnea. As for other phenothiazines, there is no evidence to support or refute the use of chlorpromazine (Thorazine) and methotrimeprazine (Nozinan), and prochlorperazine (Compazine) is not recommended for the treatment of dyspnea.34

Other pharmacological interventions often prescribed for dyspnea have limited evidence to support their use in clinical practice. Viola et al34 and Simon et al36 found no evidence to support the use of benzodiazepines such as midazolam (Versed) and lorazepam (Ativan) for management of dyspnea in both the cancer and COPD populations. No controlled trials have been conducted to study the effectiveness of systemic corticosteroids for the treatment of dyspnea.34 In an RCT of COPD patients without resting hypoxemia, oxygen provided no statistically significant difference in improving dyspnea, QOL, or functioning compared with air.37 Similarly, in an RCT38 of oxygen versus air, patients' dyspnea improved in both groups, which suggests that air provided the same benefit as oxygen.38 Small-scale clinical trials and observational trials have found that nebulized furosemide has a positive influence on dyspnea, but the authors recommended that caution must be taken with the results, and further investigation is needed to determine whether the results are replicated in larger RCTs.39 Similarly, the Oncology Nursing Society (ONS) Putting Evidence Into Practice (PEP) guidelines recommend only immediate-release morphine (oral or parenteral) for the treatment of dyspnea and state that effectiveness has not yet been established for extended-release morphine, midazolam plus morphine, nebulized fentanyl, nebulized furosemide, nebulized hydromorphone, nebulized lidocaine, nebulized morphine, oral transmucosal fentanyl, and supplemental oxygen.40

In summary, the current research evidence supports the use of oral and parenteral opioids as first-line therapy for the treatment of dyspnea. All other medications are not recommended for use because of weak evidence to support their use or not enough data to make a recommendation for or against their use. Table 2 provides a summary of each reference, the population studied, the number of studies reviewed, the study designs and sample sizes, and the recommendations for or against use of specific medications for the management of dyspnea.

TABLE 2

TABLE 2

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Nonpharmacological

Nurses frequently use nonpharmacological interventions on their own or in conjunction with medications for promoting symptom relief (Table 3). In their Cochrane review, Lacasse and colleagues41 found that pulmonary rehabilitation relieved dyspnea and fatigue, improved emotional function, and enhanced patients' control over their condition in patients with COPD. In another recent Cochrane review of nonpharmacological strategies for the relief of breathlessness, Bausewein et al42 found that most studies have been conducted in patients with COPD and that there is strong evidence to support the use of neuroelectrical muscle stimulation and chest wall vibration, moderate evidence to support the use of walking aids and breathing training, and weak evidence to support the use of acupuncture or acupressure.42 The authors found no evidence to support the use of music and insufficient data to support the use of relaxation, fans, counseling and support, counseling and support with breathing-relaxation training, case management, and psychotherapy.42 Similarly, the ONS PEP guidelines state that interventions for which the evidence on effectiveness has not yet been established (and therefore are not recommended) for the treatment of dyspnea are acupuncture and a cognitive-behavioral approach.40

TABLE 3

TABLE 3

Nonpharmacological interventions that lack specific evidence to support their use, but may be helpful for some patients and do not subject patients to harm, include sitting upright against multiple pillows, leaning over a bedside table, directing a fan at the face, and practicing purse-lipped breathing.43 A recent study using a randomized, crossover design reported a significant reduction in dyspnea by a median of 7 mm on the VAS (range, 1.5-14.5 mm) through use of a fan directed at the nose and mouth.44 Thus, the evidence for nonpharmacological interventions is improving, but continued research is needed in this area. Lastly, the BREATH AIR acronym presented in Table 4 provides a summary of the causes and treatment of dyspnea and may serve as a helpful reminder for bedside nurses.45

TABLE 4

TABLE 4

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CASE STUDY, PART 2

For 3 years, Mr A.'s COPD was managed well in the outpatient setting, and he was able to participate in family, church, and golfing activities. At his outpatient appointments, Mr A. generally rated his dyspnea at 1 to 2 on the 0- to 10-point NRS and reported that it did not interfere with his normal activities (MRC Grade 1) and that it was not bothersome to him. However, recently, Mr A. has had more frequent COPD exacerbations and hospital admissions. His goals of care have been aggressive disease management, including intensive care admissions and full code status. During the current COPD exacerbation and hospital admission, Mr A. reports a dyspnea intensity of 6 on the NRS, states that he often has to stop to "catch his breath" on flat surfaces (MRC Grade 3), has a productive cough with blood-tinged sputum, and rates pain in his chest an 8 out of 10. He also expresses concern about how his disease and increasing care needs are affecting his family and expresses worry that the increase in his dyspnea means his disease is much worse.

Computed tomography scan, bronchoscopy, biopsy, and further evaluation result in a diagnosis of Stage IV non-small cell lung cancer with metastases to the liver. The medical treatment plan includes systemic chemotherapy and morphine for pain and dyspnea. A referral has been placed for a palliative care nurse home visit upon discharge from the hospital. The palliative care nurse, seeing Mr A. in his home, focuses on his symptoms, goals of care, and concerns. Mr A., like many patients and their families, expresses concern regarding becoming addicted to opioids and wants to "save the morphine for later on, when he really needs it." The palliative care nurse explains that the morphine is being used to treat the pain in his chest and his dyspnea, that the risk of addiction is very low, and that additional morphine can be prescribed if he needs more in the coming weeks and months of life. The following are recommended responses to common myths regarding use of opioids and oxygen for the management of dyspnea.

  1. Myth: I don't want to take morphine (or I don't want to give my family member morphine) because I (he/she) will become addicted. Response:
    • Tell me more about your concerns about addiction to morphine.
    • Do you know someone who has been addicted to morphine?
    • Although we hear a lot about addiction to pain killers in the news, addiction to opioid medications such as morphine is quite rare in people who need it to treat a physical symptom associated with a life-limiting disease.
  2. Myth: I don't want to give my family member morphine because he/she will stop breathing. Response:
    • There is no evidence that appropriate use of morphine hastens death through respiratory depression.46 In fact, giving morphine appropriately can result in longer survival by reducing physical and psychological distress and exhaustion.3
  3. Myth: Oxygen helps my family member's breathlessness. Response:
    • Although there is little harm in providing oxygen to patients with dyspnea, studies show us that there really is no relief from dyspnea with oxygen compared with air. Oxygen may also inhibit mobility because patients feel they cannot go anywhere without it. However, if your family member has been using oxygen for a long time and prefers to keep wearing it, it will not harm him/her.

The palliative care nurse makes a referral to outpatient pulmonary rehabilitation to help Mr A. meet his goals of being as active as possible, so that he can participate in his volunteer and golf activities and spend time with his family. While receiving concurrent chemotherapy and palliative care, his dyspnea is well managed with oral morphine and pulmonary rehabilitation.

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CASE STUDY, PART 3

Mr A. returns to the outpatient cancer center and learns that, despite having undergone three regimens of chemotherapy, his cancer has progressed. Mr A. and his family request a clinical trial, but because his disease is far advanced, he does not qualify for one. The nurse in the cancer center has had several conversations with Mr A. and his family about goals of care. He states that since he cannot receive any further treatment, his goal is comfort and QOL. The nurse makes the referral for home hospice care and communicates Mr A.'s plan of care to the hospice team. Mr A.'s dyspnea is well managed over the next 3 months in hospice with oral morphine, and he dies peacefully at home with his family.

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CONCLUSION

Dyspnea is a complex, multidimensional, subjective symptom that can significantly impact patients' QOL. Dyspnea is often treated with a variety of pharmacological and nonpharmacological interventions, which have varying levels of evidence to support their use. Currently, oral or parenterally administered morphine is the only evidence-based pharmacological therapy recommended for treatment of dyspnea. Nonpharmacological, evidence-based interventions include neuroelectrical muscle stimulation, chest wall vibration, walking aids, breathing training, and pulmonary rehabilitation.

Areas for future research include conducting high-quality, adequately powered RCTs in a variety of chronically ill patient populations.36 These studies should focus on the comparative effectiveness of systemic morphine and other pharmacological interventions, such as other systemic opioids, nebulized opioids other than morphine (which consistently demonstrates a nonsignificant effect on dyspnea), benzodiazepines, phenothiazines, and corticosteroids.34 Future research on nonpharmacological interventions should focus on the areas where there is currently insufficient evidence, including acupuncture/acupressure, music, relaxation, fans, counseling and support programs, case management, and psychotherapy. Unfortunately, there is also insufficient evidence to support the use of nurse-led interventions traditionally presented in textbooks and taught in schools of nursing, such as teaching patients to sit upright against multiple pillows, lean over a bedside table, direct a fan at their face, and practice purse-lipped breathing. Although these interventions lack strong evidence to support their use, they may be of benefit to some patients without harming them and are easy to conduct in the inpatient, outpatient, and home settings. Research that tests the effect of these and other nurse-led interventions on dyspnea is needed. Because they routinely assess dyspnea and offer patients and families support in managing the symptom, nurses are well positioned to conduct research specific to these nurse-led interventions.

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      For more than 23 additional continuing education articles related to respiratory in nursing, go to NursingCenter.com\CE.

      Keywords:

      dyspnea; nursing interventions; palliative care; state of the science

      © 2011 The Hospice and Palliative Nurses Association