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Palliative and End-of-Life Care in LTC: Evaluation and Treatment of Dyspnea, Death Rattle, and Myoclonus
This article is the second in a series on palliative and end-of-life care in the LTC setting. The first article appeared in the April issue of the Journal. The third article will appear in the July issue of the Journal. The fourth article will appear in the September issue of the Journal.
The goal of palliative care is to prevent and relieve suffering for patients, regardless of their stage of illness. Most LTC patients should have palliative treatments integrated into their comprehensive care plan because of their high mortality rate and prevalent burden of suffering due to their chronic illnesses. These patients can be expected to suffer from many symptoms as their illness progresses. Three troubling symptoms that challenge LTC providers include dyspnea, death rattle, and myoclonus. Optimum care for these symptoms begins with vigilance for their occurrence with daily activities. Evaluation includes looking for precipitating or exacerbating causes, augmented by collaborative care planning with patients, families, and the interdisciplinary team. Clinicians should select appropriate pharmacological and nonpharmacological treatments, and outline a plan to monitor for beneficial and adverse effects of treatments. (Annals of Long-Term Care: Clinical Care and Aging 2010;18[5]:37-41).
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A good definition of palliative care is “whole-person care for patients whose diseases are not responsive to curative treatment,”1 whose goal is “to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.”2
Palliative care is not only for those at or near the end of life, but also for persons living with progressive chronic conditions. Common chronic conditions encountered in long-term care (LTC) include the following: frailty; advanced stages of cardiac, pulmonary, renal, or hepatic disease; dementia; and other progressive neurological diseases.
The term hospice refers to “a program that provides coordinated comprehensive palliative care for terminally ill patients and their families.”1 The Medicare Hospice Benefit funds hospice services for those in the terminal phase of illness, but many LTC residents with palliative care needs may not meet hospice enrollment criteria or may decline hospice enrollment.
Most LTC patients will die of progressive nonmalignant diseases.3,4 Their death often follows many months of progressively distressing symptoms that accompany advanced chronic conditions.5 Thus, palliative treatments should not be reserved for those LTC patients who are actively dying. Those patients may have more intense distress or a greater number of symptoms, but clinicians should employ palliative treatments according to the patient’s needs and goals of therapy.
As chronic illnesses progress, patients commonly experience symptoms such as pain, dyspnea, anxiety, and depression.5 When they are near the end of life, expected signs and symptoms may include noisy breathing, delirium, or myoclonus.6 Most clinicians practicing in LTC provide competent evaluation and care of anxiety, depression, and delirium, so this article will focus on anticipating, recognizing, assessing, and treating dyspnea, noisy breathing, and myoclonus.
General Principles
An essential practice for good palliative care is to be vigilant for those distressing symptoms that complicate most chronic conditions. For example, 80% of patients with end-stage heart failure will have pain, 63% will die with severe dyspnea, and up to 70% will have depression.7 Patients and caregivers may not report these symptoms because they may accept them as a “normal” part of the disease that must be endured. Thus, one must actively inquire about distressing symptoms and observe patients in their activities to detect these symptoms. Clinicians accustomed to measuring pain as the fifth vital sign may accept the practice of measuring relevant symptoms such as dyspnea and noisy breathing as the sixth or seventh vital signs as one method to aid detection and monitoring.
Assessment of symptoms should include attention to exacerbating and relieving factors, severity, timing, and impact on function, mood, sleep, and appetite. It is important to discover what the patient and family understand about the symptom and the treatment they consider appropriate. Clinicians should discover the underlying cause of the symptom, but they should tailor the intensity and complexity of investigations to the individual patient. Factors that influence this investigation include the patient’s stage of illness, his/her goals of treatment, and a balance between the potential burdens and benefits of diagnostic testing.3
Dyspnea
Dyspnea is a subjective sensation of uncomfortable breathing. The experience of dyspnea is not reliably linked to objective measurements such as arterial blood gases, oxygen saturation, or respiratory rate.8 The best way to quantify the distress caused by dyspnea is to ask the patient to rate the level of discomfort. For patients unable to communicate reliably, nursing observation should record the perceived difficulty or distress related to breathing. Many diseases and conditions can cause or aggravate dyspnea. For patients in LTC, common causes include the end-stage state, muscle weakness, deconditioning, pneumonia, bronchospasm, and chronic lung or cardiac disease.3 The contribution of these causes to a patient’s dyspnea can often be determined through history and a focused examination rather than extensive diagnostic testing.
The foundation of dyspnea palliation is to optimize care for the illness or condition exacerbating the problem, such as heart failure or chronic obstructive pulmonary disease.8 Nonpharmacologic palliation may include emotional support, relaxation techniques, and consultation with occupational and physical therapy for suggestions about energy conservation, breathing techniques, and positioning.3 Patients may benefit from fresh air from an open window, a room air conditioner, or a gentle fan. A trial of 2-6 liters of oxygen via nasal cannula may provide subjective relief, regardless of effect on oxygen saturation.3,8
Prescribing Opioids for Dyspnea
The most studied and versatile medication for relief of dyspnea is morphine, although other opioids are also effective. Many patients, families, and healthcare providers are hesitant to give opioids to frail elderly patients, especially those with underlying cardiac or pulmonary disease. A helpful way to reach agreement about a trial of opioids preferred by the author is outlined in Table I.
Opioid doses and dosing intervals for dyspnea control are the same as those used for pain control in the frail elderly (Table II). For those patients experiencing dyspnea who are already receiving a stable dose of opioids, increasing the total daily dose of opioid by 25% is usually effective.9 Effective routes of opioid administration include oral, sublingual, subcutaneous, intramuscular, intravenous, and rectal. The nebulized delivery of opioids for dyspnea relief has a limited evidence base and is not recommended.10
For those whose dyspnea occurs with predictable activities, give oral opioids 30-60 minutes before the activity (eg, personal care or transfers). Otherwise, clinicians should schedule doses of short-acting opioids, usually every 4 hours while awake. Treat breakthrough dyspnea with the every-4-hour dose (1/6 of the 24-hr morphine dose) given every 30-60 minutes as needed. If patients require more than two breakthrough doses in a 24-hour period, consider increasing the scheduled dose by 25-50%. Long-acting opioids may be appropriate once the patient is on a stable total daily dose of morphine.
Adverse Effects of Opioids
Clinicians must anticipate common adverse effects of opioids; educate patients, family, and staff about these effects; and prevent them when possible. Clinicians should provide anticipatory education about potential adverse effects, monitor for these effects, and adjust doses as needed. Appropriate clinical monitoring with initiation or upward titration of opioids includes not only a scale to assess dyspnea severity, but also specific alerts to prompt notification of the clinician and reassessment of the treatment plan. Nursing staff should monitor respiratory rate, pulse oximetry, ability to arouse the patient to his/her usual level of consciousness, and, perhaps, worsening of confusion and oral intake.11 Typical orders would thus include instructions to “notify the clinician if respiratory rate is less than 10, pulse oximetry is less than 90%, patient is un-arousable, patient has worsening confusion, oral intake is less than 50% of patient’s usual intake.”11
Delirium and drowsiness. Delirium and drowsiness are possible adverse effects when opioid-naïve patients begin these medications or when opioid doses is increased. With prudent titration, confusion or lethargy associated with dose increases are usually mild and temporary, lasting less than 24 hours.
Constipation. Constipation invariably occurs in patients receiving regular opioids, so clinicians should also order a bowel regimen to prevent constipation. Effective regimens should include a stimulant such as senna, or a nonabsorbable sugar such as sorbitol or lactulose.3 Patients may require both types of agents to control constipation.
Respiratory depression. Respiratory depression is the most feared complication of opioid use. A respiratory rate less than 10 plus a pulse oximetry less than 90% objectively define respiratory depression.12 Clinicians should also monitor the ability to arouse a patient to his/her usual level of alertness because sedation always precedes respiratory depression. Since sleeping patients may have very low respiratory rates and may hypoventilate, confirm low pulse oximetry readings or respiratory rates after gentle attempts to arouse the patient to his/her usual level of consciousness. Respiratory depression is unlikely when using the oral route and with judicious dosing and titration. Once on a stable dose of opioid, tolerance to respiratory depression develops in 2-3 days.11
A recent study that enrolled opioid-naïve inpatients with advanced illness receiving palliative care describes a safe and judicious dosing and titration algorithm.12 Dyspnea treatment was begun with oral morphine 2.5 mg. The initial dose was scheduled every 4 hours, with rescue doses equal to the scheduled dose administered with an interval of 15 minutes or more. If needed, the scheduled dose was titrated upward, first from 2.5 mg to 5 mg, and then in 5-mg increments. Following this algorithm, no patient experienced respiratory depression or had an increase in transcutaneous CO2.
Noisy Breathing or Death Rattle
Up to 50% of dying patients experience death rattle in the last days of life. Death rattle is the noise produced by vibrating secretions in the upper airway of terminal patients who cannot clear these secretions because of muscular weakness or obtundation.13 A small amount of secretions near the vocal cords can create a distressingly loud sound when amplified by the thorax. This sign has prognostic significance, because nearly 76% of patients with death rattle will die within 48 hours after this sign appears.13
Several considerations should temper the urge to “eliminate” upper airway secretions causing the death rattle. First, it is important to remind caregivers and families that patients are unlikely to experience suffering from these noisy respirations, because when this sign appears patients are usually comatose. Second, anticholinergic medications cannot “dry up” secretions that have already occurred but may decrease the volume of subsequent secretions. Third, the sign of death rattle may be due to conditions unrelated to oral and upper airway secretions, such as recurrent aspiration, pulmonary edema, respiratory infection, or tumor involvement.13,14 Importantly, clinicians should avoid suctioning to try to remove secretions from the laryngeal area. Suctioning is likely to be unsuccessful, may create pain or reflex coughing and choking, and can worsen noisy breathing by causing reactive airway edema.
Nonpharmacologic approaches to noisy breathing include education and reassurance of family and caregivers, a trial of positioning the patient on his/her side, and providing a masking noise such as music or a fan.3 It may be prudent to limit or stop tube feedings and to minimize the volume of liquid medications given for symptom control.
Anticholinergic medications may be used to reduce production of respiratory secretions, and perhaps relax tracheobronchial muscles (Table III). In general, these medications are equally efficacious15; however, one study showed more rapid onset and better efficacy with subcutaneous scopolamine 0.4 mg when compared to subcutaneous glycopyrrolate 0.2 mg.16 Glycopyrrolate does not cross the blood-brain barrier, and thus may be preferred when delirium is a concern.
Myoclonus
Myoclonus is a brief involuntary muscle contraction. External stimuli such as noise or receiving care can trigger or worsen myoclonus. Myoclonus often continues despite sleep or advancing obtundation. Although myoclonus occurs in at least 18% of LTC residents in their last days of life,6 many other conditions and medications can cause myoclonus, including metabolic abnormalities such as hypoxia, hypercarbia, hyponatremia, and renal or hepatic failure.17 Myoclonus may appear in patients with transient conditions such as delirium and progressive neurological diseases such as Alzheimer’s disease, Parkinson’s disease, and Huntington’s disease.18 Myoclonus may be an adverse effect of multiple medications, including opioids, selective serotonin reuptake inhibitors, antipsychotics, buspirone, calcium-channel blockers, dopamine agonists, levodopa, metoclopramide, cephalosporins, penicillins, and quinolones.18
Evaluation of myoclonus is similar to investigation of delirium, with attention to metabolic abnormalities, infection, and adverse medication effects. Treatment of myoclonus begins with treating modifiable causes and stopping nonessential medications.3 If myoclonus persists or is severe, benzodiazepines effectively control it.17
Summary
“The key to caring well for people who will die in the (relatively) near future is to understand how they may die and then plan appropriately.”19 Many LTC residents will suffer from symptoms amenable to palliative care for many months or years before their death. Clinicians who integrate palliative care principles and treatments into their everyday practice will not only improve patients’ quality of life, but also experience personal and professional rewards.
Dr. Smucker is Associate Director, Summa Health System Family Medicine Residency, Akron, OH, Professor of Family Medicine, Northeastern Ohio Universities School of Medicine, Rootstown, and Medical Director, Altenheim Nursing Home, Strongsville, OH.
Acknowledgments
The authors of the series “Palliative and End-of-Life Care in Long-Term Care” are members of the American Medical Directors Association’s Palliative Care Workgroup. Dr. Smucker would like to thank the nursing staff of the Altenheim Nursing Home in Strongsville, OH, for 27 years of collaboration on palliative care policies and delivery of excellent palliative care to their patients.
Drs. Anne Valeri and Amy Corcoran provided thoughtful reviews of the manuscript.
The author reports no relevant financial relationships.
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