End-of-Life Care: Symptom Management (Part 1)WHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers. Pain, fatigue and depression comprise a common triad of symptoms, especially at the end of life. Cluster analysis has shown that fatigue is often part of a cluster of symptoms that includes pain, sleep disturbances and anxiety/depression. Among patients with life-limiting disease, physical symptoms have been the cause of the most distress. The presence of multiple symptoms can create challenges in identifying causes, as many symptoms are intricately linked with others, including symptoms in the psychosocial domain. In addition to limited guidance for symptom management, a lack of objective measures for assessment makes the identification of symptoms a challenge. To help ensure that patient’s physical distress is alleviated, when clinicians ask patients about the presence and severity of symptoms, they should also ask which symptom is most troublesome. Although asking open-ended questions about symptoms is helpful, systematic assessment of symptoms is also necessary. It has been recommended that physical assessment be carried out according to symptoms and function rather than thorough a traditional systems approach. An important distinction of palliative care is the focus on dimensions other than the physical. Symptoms are accompanied by the patient’s thoughts and feelings and as such, non-pharmacologic strategies should be used to address the sensory, cognitive, affective and functional components. The healthcare team should talk to the patient and family about priorities for pharmacologic versus non-pharmacologic treatments. As research expands in the field of palliative care, other innovative strategies are becoming scientifically validated. For example, music therapy has a positive effect on many symptoms, including pain, physical discomfort, fatigue, anxiety, mood, spirituality, and quality of life. Optimum treatment of symptoms involves comprehensive assessment and use of drug and non-drug interventions. The purpose of this document is the best management of symptoms in end-of-life situations. Before initiating a symptom management approach, pharmacologic or non-pharmacologic, clinicians should allow patients time to express their thoughts and concerns. This simple step has led to better outcomes and when carried out in a supportive environment, has been almost as effective as more advanced techniques. Continual reassessment of symptoms is necessary to ensure adequate management of symptoms. It may be helpful for patients or a family member to keep a pain or symptom diary to note which measures have or have not provided relief and the duration of relief. This information will help clinicians determine the efficacy of specific therapeutic options and modify the treatment plan as necessary. The discussion of interventions in this document focuses on the care of adults. This document discusses the symptoms: Fatigue and Weakness; Dyspnea; Constipation; Nausea and Vomiting. Symptoms Common at the End-of-LifeSimilar to pain, other physical and psychological symptoms create suffering and distress. Psychosocial intervention is key to complement pharmacologic strategies. In addition, the use of chaplains, social workers and psychologists is necessary to address suffering. Reimbursement and other financial concerns may be important factors for some families and should be considered in the overall care plan. Therefore, expensive diagnostic tests should be conducted only if the benefits outweigh the family or patient’s financial burden. Criteria for ordering diagnostic tests:
Functional Ability: fatigue, immobility, pathological fractures, spinal cord compression, weakness; Gastrointestinal (GI) Function: anorexia, nausea/vomiting, dysphagia, weight loss, unpleasant taste, ascites; Bladder Function: incontinence, changes in function or control, bladder spasms; Bowel Function: constipation, diarrhea, loss of function or control; Breathing: dyspnea, cough/congestion/rattles, hiccups, altered breathing patterns; Cognition: insomnia, confusion/dementia/delirium, memory changes; Mood: depression, anxiety; Skin Integrity Issues: decubitus, mucositis, candidiasis, pruritis, edema, ascites, hemorrhage/blood loss, herpes zoster; Other: fever, diaphoresis. FATIGUE and WEAKNESSFatigue can be defined as, “a subjective perception and/or experience related to disease, emotional state and/or treatment. This sensation is multidimensional, is not easily relieved by rest, and has a profound impact on the dimensions of quality of life (QOL) including physical, psychological, social and spiritual well-being. Fatigue is influenced by the cultural context of the individual and is associated with a reduced capacity to carry out expected or required daily activities” (1). Fatigue associated with life-limiting diseases is further defined by its disproportionate relation to recent activity and the lack of recovery with additional sleep (2). Together, persistent fatigue and weakness have a significant impact on the quality of life by negatively affecting functional status, interfering with normal activities, and contributing to emotional distress (3). Fatigue may also cause distress for a patient’s family members, who may interpret this symptom as a sign of the patient “giving up.” As is the case with pain, fatigue is under-reported, under-diagnosed, and under-treated (3). Studies have indicated that approximately half of patients do not report fatigue to their healthcare team (4). Pain, fatigue, and depression comprise a common triad of symptoms, especially at the end of life (4). Cluster analysis has shown that fatigue is often part of a cluster of symptoms that includes pain, sleep disturbances, and anxiety/depression (4). Analysis of 25 symptoms among 922 patients with advanced cancer demonstrated seven clusters. One of those clusters, referred to as the fatigue/anorexia-cachexia cluster, was composed of easy fatigue, weakness, lack of energy, anorexia, early satiety, weight loss, dry mouth, and taste changes (5). Etiology Prevention Assessment Management Clinicians should talk to the patient and family about the importance of the patient conserving energy through a variety of measures. The patient should be encouraged to adjust daily activities to correspond to times of peak energy, to set priorities for activities, to follow a normal wake-sleep cycle, and to use assistive devices (14). Physical and occupational therapists can help identify assistive devices that will help the patient and can provide instruction in their use. These therapists may also be able to develop programs that will help relieve fatigue. With guidance from the healthcare team, the family and patient can work together to develop a plan that helps the patient enjoy as many favorite activities as possible. Counseling about setting realistic goals for activities and function may also help patients and family members adapt to new daily routines. Summary of non-pharmacologic management of fatigue: Conserving energy; set priorities for activities; schedule activities for times of peak energy; use assistive devices; delegate less important tasks to others; limiting duration of naps; structuring a daily routine; distraction; reading; socializing; games; music; sleep therapy; sleep restriction; sleep hygiene; stimulus control; nutrition counseling; aerobic exercises; physical and/or occupational therapy; cognitive and behavioral therapy; stress management and relaxation Treatment of fatigue should begin with management of a contributing factor, if one has been identified. When medications are the underlying cause of the fatigue, nonessential medications should be discontinued, and changing medications or the time of dosing may reduce tiredness during the day. Erythropoietin (Epogen) and darbepoetin (Procrit) have shown benefit for fatigue related to anemia in patients with cancer, human immunodeficiency virus/ acquired immune deficiency syndrome (HIV/AIDS), or end-stage renal disease (15). However, it may be four to six weeks before treatment is effective, and the cost of erythropoietin therapy is high (15). However, safety concerns led the U.S. Food and Drug Administration (FDA) to require a boxed warning on the label of erythropoiesis-stimulating agents regarding the increased risk of several adverse events (death, myocardial infarction, stroke, venous thromboembolism, thrombosis of vascular access, and tumor progression or recurrence) among people with chronic kidney disease or cancer. The FDA recommends using the lowest dose sufficient to avoid red blood cell transfusion. A trial of a tricyclic antidepressant may be appropriate for patients who have fatigue related to sleep disturbances (8). Bupropion, an atypical antidepressant, may also be beneficial for treating fatigue related to depression (16). Studies of medications for the symptomatic treatment of fatigue in the palliative care setting have focused on psychostimulant agents, such as methylphenidate, modafinil, pemoline, and donazepil. Methylphenidate and modafinil have received greater attention than pemoline and donazepil, and the drugs have been studied in different populations (17). None of the drugs has been compared directly with another. Pharmacologic treatment of fatigue should be undertaken only after potential causes of fatigue have been ruled out (17). When a pharmacologic agent is deemed appropriate, the first-line option is generally methylphenidate (18). A systematic review found that methylphenidate was significantly more effective than placebo for the treatment of cancer-related fatigue (18). This drug has also been reported to be effective for the treatment of fatigue in patients with AIDS and for opioid-induced sedation. An optimal dose has not been defined, but an initial dose of 5–10 mg (given in the morning) has been used, with the dose titrated to 40–60 mg per day (given once in the morning and once at midday). Among the side effects of methylphenidate are nervousness, jitteriness, agitation, arrhythmia, and tachycardia. Modafinil has been evaluated primarily in patients with advanced neurologic diseases, and some findings indicate that the drug may be useful as a treatment option for fatigue in patients receiving palliative care (17),(18). The initial recommended dose is 200 mg per day, which can be titrated to 400 mg per day (19). Major side effects have included agitation, nervousness, sleep disturbances, nausea, and diarrhea. Pemoline has had some benefit for patients with AIDS, but its use is limited by the potential for liver toxicity (19). The findings of one uncontrolled study indicated that donazepil, which is approved for the symptomatic treatment of Alzheimer’s disease, was effective for opioid-induced sedation in patients with advanced cancer. DYSPNEADyspnea is defined as a distressing shortness of breath and is frequently called breathlessness. The experience of dyspnea can be extremely frightening. Dyspnea, like pain, is multidimensional in nature, with not only physical elements but also affective components, which are shaped by previous experience. Dyspnea is a subjective sense of breathlessness (shortness of breath) and ranges from experiencing breathlessness on exertion to severe shortness of breath for longer periods of time. Patients may describe dyspnea as “smothering,” “suffocating,” or “drowning.” Dyspnea can have a substantial impact on a patient’s quality of life, not only causing distress for both patients and their families but also restricting the patient’s activities. Etiology Prevention Assessment Physical assessment of the patient should include evaluation of breath sounds, heart rate, respiratory rate, jugular pressure, and functional status. When warranted, such diagnostic tests as chest x-ray, electrocardiography, or pulmonary function studies can help determine an underlying cause to the dyspnea. But the risk-benefit of these tests should be considered, as should the prognosis and the patient’s wishes for such testing. Management Other non-pharmacologic approaches are targeted to promoting better air exchange, addressing emotional factors, and creating a calm environment. Use of a fan and maintaining cooler temperatures can help relieve a sense of breathlessness. Repositioning the patient by elevating the head of the bed or moving him or her to one side can help promote better exchange of air, and pursed lip breathing can help the patient feel more in control of the pace and depth of respiration. When stress is deemed to be a contributing factor, relaxation techniques, distraction, massage, and prayer may be of benefit. In addition, the clinician should refer the patient and/or the family for counseling on family, legal, spiritual, or financial issues, as appropriate. Ways to create a calm environment free of stimulants include:
Pharmacologic Management (22)
Oxygen use in non-hypoxemic patients may have limited benefit. Studies evaluating oxygen therapy in dyspnea vary in their findings. The need for oxygen for dyspnea at end of life is dependent on the patient’s perception of the need, and their perception of its effect. Many practitioners believe that oxygen is not necessary near the end of life, that it can actually cause discomfort, and that comfort can be better achieved using morphine. Indeed, many patients with dyspnea near death frequently remove their oxygen, and can be kept comfortable without it. It is imperative, however, that patients with dyspnea who do not promptly respond to morphine (or other medications), be given a trail dose of oxygen to assess its effect, regardless of whether or not they are hypoxemic. Fans, open windows and air conditioners that circulate air have been reported to be helpful in the relief of dyspnea. Similarly, cold air directed against the cheek may reduce the perception of breathlessness. Elevation of the head of the bed and the ability of the patient to sit in a forward and upright position reduces choking sensations and promotes expansion of lungs. Placing the patient’s arms on pillows may promote air exchange. Energy conservation is also important to reduce breathlessness and fatigue. It is important that the patient and family are educated regarding the various techniques that may reduce dyspnea. Education regarding the use of cognitive-behavioral, interpersonal and complementary strategies will help give the patient a sense of control and decrease anxiety. Presence and reassurance are also vital. CONSTIPATIONConstipation is defined as the infrequent passage of stool. Associated symptoms may include rectal pressure, straining, cramps, distension, and/or the sensation of bloating. Constipation is a frequent symptom in patients at the end of life. While constipation occurs in approximately 10% of the general population, its incidence can be as high as 50% to 78% in the ill adults (23). Issues of personal privacy often lead to a reluctance of patients to discuss constipation, so clinicians and other healthcare professionals must initiate the discussion and talk honestly about what to expect and measures to prevent and manage the symptom. Etiology Prevention Assessment Management Pharmacologic Management of Constipation
PO: orally; IV: intravenous Non-pharmacologic interventions are important adjuncts to laxatives. Fluid intake, a diet high in fiber, and regular exercise are important contributors to improved bowel function (24),(25). These measures should be encouraged when the patient’s health and functional status allow. Patients and families should be informed that it is essential to increase fluid intake if the diet is high in fiber or if fiber supplements or bulk laxatives are taken. Without adequate fluid, constipation may be increased by these measures. Enemas may be helpful for patients with fecal impaction, but in general, this approach should be avoided. In summary, patient complaints of constipation (or in some cases if defecation is <3 times a week); assess patient to confirm constipation and exclude malignant intestinal obstruction. Assess the causes and if correctable treatment of the causes. If it is not correctable – start the treatment of the constipation. First-line of treatment is with oral laxatives: combination of a softener (e.g. polyethylene glycol and electrolytes or lactulose) and a stimulant (e.g. senna or sodium picosulphate) according to patient needs (refer to prescribing instructions for recommendations) – if improvement of symptoms occurs, continue with regimen. If there is no improvement of symptoms, second-line of treatment: rectal suppository and enema (refer to prescribing table for options). Consider use of peripherally-specific opioid antagonist, e.g. methylnaltrexone, if patient is taking an opioid. Improvement of symptoms – continue with regimen. If no improvement of symptoms; third-line of treatment: manual evacuation. Consider use of a peripherally-specific opioid antagonist, e.g. methylnaltrexone, if patient taking an opioid. Non-pharmacologic interventions are important adjuncts to laxatives, and the interventions used as prophylaxis are recommended for ongoing management. NAUSEA and VOMITINGNausea is the unpleasant sensation of feeling the need to vomit. It can occur alone or with vomiting, a neuromuscular reflex. Nausea and vomiting can exacerbate pain and contribute to insomnia, fatigue, anorexia, and asthenia. It can also limit activities and cause distress for the patient and family. Nausea is the result of stimulation of one of several pathways: the chemoreceptor trigger zone (located in the medulla), the cortex of the brain, the vestibulocochlear nerve, or the gastrointestinal tract (27). Etiology Causes of Nausea and Vomiting According to Pathway Stimulated
NSAIDs: non-steroidal anti-inflammatory drugs Prevention Assessment Management Pharmacologic Management of Nausea and Vomiting
PO: Orally; IV: intravenous; SC: subcutaneous In addition to pharmacologic management of nausea and vomiting, other supportive approaches include maintenance of oral hygiene, regular baths to reduce unpleasant odors, and small meals at regular intervals. Cold foods may be better tolerated than hot foods because of decreased smells. Progressive relaxation and cognitive therapy (especially mental imagery) may be of benefit for nausea caused by stimulation of the cortical pathway. Hypnosis and acupuncture have demonstrated some success. Early Implementation of Palliative CarePatients with cancer experience many complex issues throughout the trajectory of the disease. These range from physical consequences of cancer and treatment to the psychological, social and spiritual issues associated with living with disease. An individualized, comprehensive, and interdisciplinary approach is needed to reduce patient suffering and ensure appropriate symptom management and support from the time of first diagnosis to end of live. Data from randomized clinical trials prove that patients provided with early palliative care can experience relief of symptoms and improvements in quality of life, mood, satisfaction, resource use, and advance care planning (31). Patients with advanced cancer and their families frequently experience a high burden of suffering regardless of whether the cancer can be cured or controlled. Suffering, in its many forms, is not limited to the last days of life but occurs throughout the course of the disease beginning at diagnosis. Furthermore, patient’s needs may vary across the different stages of the disease trajectory. Many patients with metastatic cancer can live for years after diagnosis, and patients with newly diagnosed advanced cancer often have a high symptom burden. With the growing incidence and prevalence of cancer and the number of patients who live with the consequences of the disease and treatment, a comprehensive but individualized approach is needed to ensure that all patients receive quality cancer care that includes symptom management and consideration of quality of life throughout the course of illness. Palliative care focuses on the relief of suffering in all its forms and on achieving the best possible quality of life for patients and their caregivers. The scope of palliative care varies across sites and locations, ranging from only end-of-life care to the management of symptoms and other distress across the full trajectory of disease from first diagnosis. The most recent definition of palliative care generally advocates a comprehensive, interdisciplinary approach from an early stage of the disease. The focus of palliative care is on the patient and the family, and it emphasizes the coordination of care across settings and providers. SummarySymptom management is an essential element in any care setting, requiring diligent ongoing assessment and evaluation of interventions. Side effects related to treatment of symptoms must be understood and treated. Fatigue assessment of the whole person remains paramount and includes the consideration of the body as well as the mind and spirit. Treatments for fatigue vary but may include both pharmacologic and non-pharmacologic treatments. When the science and art of palliative care are put into action, a person who faces death from a terminal illness need not suffer agony. The amount dyspnea present may not be related to the extent of disease. Currently, no tool exists other than patient self-report. It therefore helpful to ask about shortness of breath in relation to activities such as “walking at the same speed as someone of your age”, “stopping to catch your breath when walking upstairs,” or “eating”. It is important that the patient and family are educated regarding the various techniques that may reduce dyspnea. Much research is needed to evaluate pharmacologic treatments for dyspnea. Many practitioners believe that oxygen is not necessary near the end of life, that it can actually cause discomfort, and that comfort can be better achieved using morphine. Constipation may be a highly embarrassing issue for the patient and this situation can frequently evolve to a severe problem. Talking frankly and openly regarding this symptom and encouraging discussion helps prevent significant distress. Prevention is the key. The incidence of nausea and vomiting is quite common in advanced disease. Treatment of nausea is dictated by the presumed cause. Any underlying cause should be treated if possible. Interventions that have worked in the past may also be of benefit. Nausea and vomiting can be exceptionally frustrating, painful and exhausting for the patient and family. These symptoms clearly increase suffering and require immediate intervention in ensuring patient comfort. Suggested ReadingEnd-of-Life Decision Making End of Life Care: Pain Assessment and Management References
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