Palliation of Dyspnea
in Patients With
Heart Failure
Denise E. K. Martin, MSN, ACNP-BC
Dyspnea is a subjective sensation, measurable by patient self-report on
validated scales, and common in patients with heart failureVespecially
in later stages of the disease. When usual care is not sufficient to
relieve refractory dyspnea, a palliative care referral can minimize
this distressing symptom. Unfortunately, many clinicians are reluctant to
consult palliative care teams because of the conflation of hospice,
which requires the acceptance of death and refusal of curative
treatment, with palliative care, which is a service focused on the
provision of symptom control to any patient, regardless of prognosis.
The evidence around various strategies for relieving refractory dyspnea
in patients with heart failure is reviewed, and other benefits of early
consultation with palliative care are mentioned.
Keywords: Dyspnea, Heart failure, Palliative care
[DIMENSCRITCARENURS. 2011;30(3):144/149]
DYSPNEA IS SUBJECTIVE
Dyspnea, variously known as shortness of breath or air hunger, is a common and highly distressing sensation that patients with heart failure often encounter, espe-cially late in the progression of the disease. Because we have objective measures such as respiratory rate, pulse oximetry, pulmonary function tests, and blood gases, it is tempting to assume that dyspnea can be measured. However, like pain, dyspnea is in fact a subjective expe-rience, not directly correlated with blood gases.1 The American Thoracic Society defines dyspnea as ‘‘a sub-jective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity. The experience derives from interactions among multi-ple physiological, psychological, social, and environmen-tal factors and may induce secondary physiological and behavioral responses.’’2
Pulmonary congestion, or fluid volume overload in the lungs, is commonly assumed to be the culprit when heart failure patients complain of dyspnea. However, breathing involves the complex interaction of the brain’s respiratory center, somatic and autonomic nervous sys-tems, intercostal and accessory muscles, chemoreceptors, and mechanoreceptors.3 Dyspnea seems to be triggered by at least 3 anomalies: (1) an increase in the respiratory effort needed to overcome a load (such as the fluid in a pleural effusion), (2) an increase in the proportion of respiratory muscle needed to maintain workload (seen, for example, in cachexia), and/or (3) an increase in ven-tilatory requirements (seen in hypercapnia, metabolic acidosis, or anemia).3 In dyspnea, areas of the cortex and descending inhibitory pathways that synapse in the spine are activated. This is analogous to the experience of pain when similar neural networks are involved.
Because of shared synapses in the anterior insula of the brain’s limbic system (the emotional processing center), emotions such as anxiety modify the subjective experi-ence of dyspnea.2For example, someone short of breath after winning a race is unlikely to be distressed, whereas he/she might be if the same sensation occurred at rest.
However, breathing involves the
complex interaction of the brain’s
respiratory center and somatic and
autonomic nervous systems.
The only way to actually measure a subjective expe-rience like dyspnea is to ask the patient. Akin to com-monly used pain scales, the Modified Borg dyspnea scale4-6 is a simple validated tool that, when used seri-ally, helps clinicians determine the degree to which dys-pnea is worsening or improving and whether treatments are helping. It is a visual analog scale with verbal descrip-tions from 0 (no breathlessness) to 10 (maximum breath-lessness). Observational scales for nonverbal patients and more complex instruments for specialty purposes also exist6but are beyond the scope of this article.
Experience of Dyspnea: A Case Illustration
J.R. is a 68-year-old African American man with coronary artery disease, heart failure, pulmonary edema, and mild chronic renal insufficiency, status post implantation of a biventricular pacer and intracardiac defibrillator. This is his third admission in as many months for shortness of breath. He has generally been adherent with diet and medications, but he gains weight more easily now, and the extra doses of furosemide and metolazone (recommended over the phone by his heart failure nurse practitioner) did little to relieve his symptoms. This admission, despite a 7-lb weight loss, flat neck veins, clear lung fields, no ankle edema, and an SpO2of 97% on room air, he still feels unable to catch his breath enough to brush his teeth. The addition of 4 L oxygen via nasal cannula and 3 doses of sublingual nitroglycerin have not provided symptom
relief; cardiac enzymes and computed tomography angiog-raphy (CTA) have been negative. He owns a small corner store, and he does not want to ‘‘give up’’ on the productive work he enjoys. The night nurse suggests we consider getting a palliative care consultation.
BARRIERS TO THE USE OF PALLIATIVE CARE
The Oft-Misunderstood Purpose
of Palliative Care
Understanding that dyspnea is subjective is key to recog-nizing when symptom palliation is necessary. Unfortu-nately, the very word ‘‘palliation’’ is loaded for many clinicians, patients, and families. Perhaps this is due to the conflation of the hospice model with palliative care. However, hospice, which began as a grassroots movement opposed to fruitless attempts for medical cures at the end of life, requires forfeiture of any curative intent and, at least under Medicare in the United States, requires that a patient have 6 months or less to live. Palliative care has no such requirements. It began in academic medical centers out of a desire to provide better management of refractory symptoms in critically ill patients, and prognosis is not part of the calculation.7But the confusion remains. A pub-lished critique8points out that when a recent consensus panel developed 10 criteria for triggering ‘‘palliative care’’ consults on patients in surgical intensive care units, none of the criteria were in reference to management of un-controlled symptoms such as pain, dyspnea, or emotional distress; they included only criteria suggestive of impend-ing death.
Traditional models of medicine often view cure and comfort as mutually exclusive; the science of nursing has long advocated caring for the whole patientVphysically, emotionally, spirituallyVand so is perhaps more ame-nable to the notion that focusing on symptoms need not preclude continued aggressive treatment of disease. An integrated model of palliative care has been proposed9-11 (Figure 1), in which as illness progresses, palliative care assumes a gradually expanding role, is replaced with hos-pice at the end of life, and continues with bereavement care for survivors.
This idealized model overlies a progressive, gradually worsening disease trajectory, like that seen in pancreatic
cancer or Lou Gehrig’s disease. But in heart failure, the disease trajectory is rarely a smooth downward slope. It is punctuated by decompensations and recoveries (Figure 2).12,13For example, a patient may be asymptom-atic for months and then deteriorate rapidly because of dietary indiscretions, forgetting to take medications while on vacation, or exacerbation of other illnesses or disease. Patients hospitalized for heart failure are at high risk for death within 1 year (20% to 47% of discharges). The frequency of hospital admissions and lengths of stay tend to increase at the end of life, to an average of 82.8 days during the last 2 years of life, with 1 of every 4 days spent in the hospital during the last 6 months of life.14 Both in end-stage and nonYend-stage heart failure, a median 62% to 72% of patients experience dyspnea,15 although in end-stage disease fewer probably respond to conventional therapies. This suggests critical-care nurses frequently care for heart failure patients who are ex-periencing refractory dyspnea.
This suggests that critical-care
nurses frequently care for heart
failure patients who are
experiencing refractory dyspnea.
If the integrated palliative care model were adapted to heart failure’s punctuated trajectory, (Figure 3), pal-liative evaluation and intervention would indeed be
epi-sodic, but over repeated hospitalizations, the care team would establish a relationship with the patient. The pre-cise arrangements of this care (use of a palliative consult service versus this becoming a core competency of the heart failure team) are a decision for individual providers and institutions, but establishing continuity of palliative care has far-reaching benefits.
Clinicians Are Often Unaware of What
Palliative Care Has to Offer
Palliative care teams, although often called in at the end of life because symptom management is indeed important at this phase, have the tools to manage difficult symptoms in patients regardless of prognosis. This specialty has valu-able experience with a vast number of symptoms including pain, dyspnea, depression, anxiety, fatigue, nausea, delir-ium, insomnia, constipation, anorexia, edema, confusion, and beyond.11 Patients tend to report just the more dis-tressing symptoms,16but symptoms tend to cluster in some-what predictable ways. For example, 2 clusters seen in heart failure include a physical cluster of dyspnea, fatigue, and sleep disturbance and an emotional/cognitive cluster of worry, depression, and worsened cognition.17Treating only the predominant symptom (eg, dyspnea) in this clus-ter, therefore, may not fully relieve the patient’s distress. The science behind which symptoms cluster together and whyVwhat common etiology they shareVis still in its in-fancy. With more research into shared mechanisms, we may one day have treatments that can provide multisymp-tom relief, but today palliative clinicians need to meticu-lously measure and address individual symptoms. Figure 2. Theoretical dying trajectories. Adapted from Lunney et al.12,13
Palliative Care Services Are Not
Available at All Institutions
Palliative care teams are not ubiquitous, but recent years have witnessed explosive growth. The number of hospitals in the United States with some type of palliative care pro-gram nearly doubled between 2000 and 2005, such that 30% (and 70% of those with9250 beds) offered palliative
care. Data showing substantial cost savings18suggest that availability will continue to grow, although at present teams do vary in composition and in strengths.19
OVERVIEW OF THE TREATMENT
OF DYSPNEA
First, Treat the Cause
It would be remiss to jump right into treatments for re-fractory dyspnea without ensuring that reversible sources of the dyspnea have been investigated and treated.20 Di-uretics are the cornerstone of fluid management in heart failure, and the relief of pulmonary congestion is often sufficient to relieve dyspnea. As heart failure progresses, diuretic resistance is common, necessitating higher doses or more potent loop diuretics, the addition of thiazide diuretics such as metolazone, and the use of continuous diuretic infusions. Patients who have persistent pulmo-nary congestion despite aggressive diuresis may want to consider aquapheresis.11If fluid has moved into the pleu-ral space, thoracentesis may provide significant relief. For some patients, reduction in afterload and vasodilation with long-acting nitroglycerin and hydralazine may be helpful, and in others, continuously infused inotropes prove helpful, although with risk of hypotension.11In appropriate patients, cardiac resynchronization therapy (biventricular pacing) or correction of other conduction defects may improve dyspnea. If infection is implicated, antibiotic therapy may provide relief, although often not for several days. In anemia, transfusions, iron, or ery-thropoietin may eventually provide relief.
State of Science of Dyspnea Care in Heart Failure
Historically, palliative care research has focused on symp-tom management in cancer patients, some of whom expe-rience dyspnea due to pulmonary involvement or cachexia. However, most controlled trials of treatments for dyspnea have centered on patients with chronic obstructive pulmo-nary disease (COPD). Only a handful of trials have focused on or even included heart failure patients with dyspnea; thus, current practice is informed mainly by this body of research.
Treatments Thought to Relieve
Dyspnea That Probably Do Not
Contrary to current practiceVand the recommendations of some palliative care textbooksVa recent Cochrane
review21 of randomized controlled trials showed that benzodiazepines, including lorazepam (Ativan), diazepam (Valium), midazolam (Versed), and alprazolam (Xanax), were not, in fact, effective for dyspneic patients with end-stage COPD or cancer. They were also ineffective at re-ducing the anxiety associated with breathlessness in these patients. It is unclear if the mechanisms behind dyspnea in heart failure are sufficiently different than those in COPD or cancer, and in light of the negative side effects of these medications (impaired mental and motor function, lightheadedness, nausea, and physical dependence if used long-term), the Cochrane reviewers recommend against their use as first-line therapy in refractory dyspnea, at least in COPD and cancer. Research on potential usefulness as second- or third-line therapy is ongoing, and research on their use in dyspnea caused by heart failure is needed.
It is unclear if the mechanisms
behind dyspnea in heart failure
are sufficiently different than those
in COPD or cancer.
Because of its effectiveness in other situations, oxy-gen is commonly given to patients experiencing dyspnea. Double-blind trials found that dyspneic cancer patients receiving oxygen compared with room air via nasal can-nula reported equivalent symptomatic improvement.2 This was true for both hypoxic and nonhypoxic cohorts, although of course hypoxic patients have other indi-cations for the oxygen besides palliation of symptoms. In patients who are not hypoxic, oxygen is no better than room air for dyspnea.11 Dyspneic patients, how-ever, are sometimes unwilling to forego oxygen; this may be due to the effects of trigeminal nerve stimulation, dis-cussed below.
Treatments Often Overlooked for
Dyspnea That Do Work
To date, the most effective pharmacological therapy for refractory dyspnea has been low-dose opioids. This may seem counterintuitive, because overly high doses of opi-oids blunt respiratory drive. However, the discovery that dyspnea and pain share cortical and spinal pathways lends some explanation to the dual observations that opioids relieve dyspnea and naloxone actually worsens it.2 Two Cochrane reviews explore the subject of opioids in dys-pnea.1,22 Randomized controlled trials of various oral and parenteral opioids for dyspnea found that both pro-duce a clinically relevant improvement in dyspnea. This
improvement was indeed small, averaging 0.8 on the Modified Borg scale; nonetheless, improvements were real, and required dosages were quite low compared with what is required for pain control.1The best choice of opioid and the ideal dosing have yet to be fleshed out, but experience has shown that doses as small as 0.25 mg of morphineV certainly not a dose likely to produce respiratory depres-sion or deliriumVcan be effective.11Note that this benefit has been shown with oral and intravenous opioids; at-tempts to target abundant opioid receptors in the lung via nebulized opioids (in patients with interstitial lung dis-ease) failed to relieve dyspnea and in some cases caused lung irritation.22Some adverse effects may occur even with low-dose opioids (eg, nausea/vomiting, constipation, and pos-sibly withdrawal if discontinued after extended use), but these are quite well understood and easily managed.
In the nonpharmacological category, using a fan to move air over the face is highly effective, is inexpensive, and has no adverse effects.23The mechanism is unclear, but may involve stimulation of nerves along the trigemi-nothalamic tract.
The list of treatments lacking sufficient data to support or discard is long,11,23 and some therapies that showed promise for dyspnea in other diseases may or may not be effective in heart failure. These include acupuncture/ acupressure, hawthorn extract, music (as a distraction), progressive muscle relaxation (to relieve anxiety related to breathlessness), the use of walking aids (to allow rest between steps, and a forward leaning position especially beneficial to patients with COPD), chest wall vibration (to activate intercostal muscle spindles in patients with COPD), neuromuscular electrical stimulation (which re-places exercise in deconditioned patients), psychother-apy, various forms of counseling and support (including a successful pharmacist-led counseling program to pro-mote medication adherence in patients with heart fail-ure), and multifaceted outpatient case management.
Managing Dyspnea: A Case Illustration
When the palliative care consultant first meets J.R., he rates his dyspnea 6 of 10 on the Modified Borg scale while at rest. Pulse oximetry is excellent on room air, but the patient insists he feels worse without a high flow rate of oxygen. Recognizing this important placebo effect, the team arranges to have a fan brought to his room. With the fan on, he accepts a gradual wean to 2 L oxygen via nasal cannula by the end of the first day without a worsening of symptoms. Furthermore, it is determined that J.R., al-though naturally concerned about his health, is not experiencing anxiety and has no history of it, so the al-prazolam that had been ordered as needed is cancelled. In its place, the team orders 0.25 mg morphine to be given intravenously every 4 hours (with the recognition that if
ordered on an as-needed basis, misunderstandings about the therapeutic goals might result in infrequent adminis-tration and limit feedback about the efficacy of this dosing regimen). The next day, J.R. accepts being fully weaned from the oxygen, preferring the fan and the freedom it allows him. He thinks the morphine helped a bit, bringing his dyspnea down to a 5 of 10, and he did not notice any adverse effects, but the effect seemed to wear off quickly, so the team increases the frequency to every 3 hours. Fur-thermore, a cane with an attached folding seat is procured, allowing the patient to walk further without fear of be-coming stranded short of breath.
CONCLUSION: DYSPNEA AND BEYOND
Identifying and managing dyspnea and related symptoms can provide a patient with heart failure with a better quality of life and greater satisfaction with care.11Getting a consult early (when the patient still has months or years to live) gives the palliative care team time to optimize treatments and engage patients in discussions about their wishes. When patients know they will not be left to suf-fer, they are better able to identify their goals about qual-ity of life and ‘‘life-prolonging’’ treatmentsVwith ‘‘life prolonging’’ in quotations because, ironically, heart failure patients who chose hospice actually survived an average 81 days longer and with better quality of life compared with matched counterpartsVperhaps by avoiding the risks of infection and adverse events associated with hospi-talizations and invasive procedures.24This improved com-munication leads to substantial cost savings18 and can help avoid unpleasant final scenarios such as hospital-acquired infections, repeated shocks by an intracardiac defibrillator before death, or lack of advanced directives. Our understanding of dyspnea and its management is in its infancy. Clinical trials directed at dyspnea in the heart failure patient are still desperately needed so that we understand which of the treatments studied in pa-tients with cancer and COPD translate to the unique mecha-nisms of heart failure. However, heart failure patients cannot be enrolled in clinical trials if they are not identified as potential beneficiaries until immediately before dying; progress in the science of dyspnea care for heart failure patients requires clinicians to recognize this trajectory and direct patients to palliation earlier. Ensuring that pa-tients in heart failure have excellent dyspnea palliation is part of good heart failure care, good critical care, and good patient care.
Acknowledgments
The author thanks Dr Deborah Becker, PhD, ACNP, BC, CCNS, and Dr Salimah Meghani, PhD, MBE, CRNP, for their advice in the preparation of this article.
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ABOUT THE AUTHOR
Denise E. K. Martin, MSN, ACNP-BC, recently graduated from the Adult Acute Care Nurse Practitioner program at the University of Pennsylvania School of Nursing and earned board certification in adult acute care. She is currently searching for an acute care nurse practitioner position. She has bedside nursing experience with inpatient hospice care, as well as graduate school clinical experience with heart failure. Address correspondence and reprint requests to: Denise E. K. Martin, MSN, ACNP-BC, 4701 Pine St, Box 151, Philadelphia, PA 19143 (DeniseEKMartin@alumni.upenn.edu).
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