VNAA Blueprint for Excellence PATHWAY TO BEST PRACTICES
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1 VNAA Blueprint for Excellence PATHWAY TO BEST PRACTICES Clinical Conditions and Symptom Management: Common Distressful Symptoms VNAA Best Practice for Hospice and Palliative Care
2 Why These Symptoms? Uncomfortable physical and psychological symptoms at the end-of-life are common. Many of these symptoms are typical during the final hours while others occur early on in the trajectory of decline. This module reviews the following common distressful symptoms that occur at the end-of-life: Anxiety, Bowel Management Constipation, Bowel Management Diarrhea, Death Rattle, Delirium, Depression, Fatigue, Hemorrhage, Nausea/Vomiting, Wounds. 2
3 Definition of Best Practices 1. Symptoms are treated according to patient/caregiver preferences that are discussed and documented. (NCP, 2013). 2. Caregivers are educated on how to manage symptoms and what to expect in the final hours. 3. Clinical documentation should include tools as part of the assessment process to provide a way to document decline objectively. 3
4 Clinical Interventions/Actions Train staff to recognize the trajectory of dying including likely symptoms, and proactively develop a plan for managing symptoms with the patient and caregiver. A history and physical is needed to identify etiology and guide treatment decisions (Coyne and Panke, 2011) Interdisciplinary teamwork is essential. Written information on specific symptoms should be available to staff to leave in the home. 4
5 Anxiety Anxiety is characterized by excessive worry and apprehension that is difficult to control. It can be associated with restlessness or feeling keyed-up or on edge, difficulty concentrating, irritability, muscle tension and sleep disturbances. 5
6 Critical Interventions/Actions - Anxiety Staff training should include: The goal should be to prevent disabling anxiety or panic attacks and ameliorate anxiety that is contributing to other symptoms such as shortness of breath (EPERC #145, 2009). Focus should be on physical signs, behaviors, the patient s experience and potential causes (e.g. medications). Both non-pharmacologic and pharmacologic interventions should be utilized. 6
7 Tools Anxiety screening and severity questions are included in the ESAS. The National Comprehensive Cancer Network (NCCN ) Distress Thermometer* asks patient to rate distress from 0 (none) to 10 (Extreme distress) *Linked with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines ) for Distress Management V National Comprehensive Cancer Network, Inc. All rights reserved. The NCCN Guidelines and illustrations herein may not be reproduced in any form for any purpose without the express written permission of the NCCN. To view the most recent and complete version of the NCCN Guidelines, go online to NCCN.org. NATIONAL COMPREHENSIVE CANCER NETWORK, NCCN, NCCN GUIDELINES, and all other NCCN Content are trademarks owned by the National Comprehensive Cancer Network, Inc. Brief Symptom Inventory a short version of the SCL90-R instrument. 7
8 Bowl Management - Constipation Constipation is defined as having fewer than 3 bowel movements per week and is often characterized by straining, lumpy or hard stools that are difficult to expel. Constipation occurs in 50% of hospice patients with the incidence increasing to % in cancer patients. 8
9 Bowl Management Constipation Best Practice All patients who are on opioids are started on a bowel regimen to help prevent constipation. 9
10 Critical Actions/Interventions - Constipation Documentation should include the presence of bowel sounds, the frequency of stools, and any recent bowel changes. Staff training should include: Ways to prevent constipation. Evaluation of drugs for their tendency to be constipating. Individualize treatment plans based on etiology and severity of the condition. What a bowel regimen typically 10
11 Bowel Management - Diarrhea Diarrhea is defined as the abrupt onset of 3 or more loose stools per day (Medscape, Reference). It is a common disorder in its acute form and has many causes. Although less prevalent in hospice patients than constipation, it is often very distressing to patients and stressful for caregivers. Effects are significant as patients suffer from skin breakdown, dehydration, fatigue and embarrassment. 11
12 Critical Interventions/Actions - Diarrhea Documentation should include attention to medications and the character and frequency of stools by using the National Cancer Institute Scale of Severity of Diarrhea. Staff training should include: Treatment is determined by the underlying cause. Maintain hydration. Anti-diarrheals can be used judiciously. A clear liquid diet is indicated and advanced as the diarrhea resolves. 12
13 Critical Interventions/Actions - Staff training -2 Diarrhea Additional goals should be to maintain skin integrity and dignity. Medications that can be considered include opioids, absorbents, adsorbents, antisecretory, anticholinergics, and alpha adrenergic agonists. Causes include infections, malabsorption, co-morbid conditions and treatment related. 13
14 Death Rattle Death rattle is defined as a type of noisy breathing related to retained secretions that sounds like snoring or rattling during the inspiratory and expiratory phases of respiration. It is common in nearly 25% of dying patients (Montagnini 2004). It is a strong predictor of death. 14
15 Critical Interventions/Actions Death Rattle Educate caregivers verbally and in writing about what to expect in the final hours and that death rattle in normal. Written information should be made available. Use of anticholinergic medications (NCI #7, 2014) is mixed with no conclusive evidence that these medications are helpful. Documentation should include one of the suggested tools listed below. 15
16 Critical Interventions/Actions Staff Training should include: Death Rattle Non pharmacologic interventions are the mainstay of treatment. There are many proposed causative factors. It is a strong predictor of death (Wilders, 2002), and very distressing to caregivers and healthcare professionals. Typically heard in the patient s final hours as the patient often cannot clear secretions. 16
17 Respiratory Distress Observation Scale (RDOS) (Campbell, 2010) This is an adult observational scale that evaluates indicators of respiratory distress including heart rate, respiratory rate, restlessness, accessory muscle use and other indicators. It has been validated for use by trained caregivers, but not yet for use by caregiver members. Tools Death Rattle 17
18 Delirium Delirium is defined as acute onset of waxing and waning confusion, decreased attention span, disorganized thinking and altered level of consciousness. It is extremely common in the last days of life. As many as 80% of patients develop delirium near death. 18
19 Critical Interventions/Actions - Staff training should include: Delirium How to recognize delirium and pinpoint possible reversible causes. Assessment is based on a comparison of the patient s mental status to baseline. It should include a thorough medication review and all non-essential drugs should be discontinued. (Montagnini and Moat, 2004) Interventions are based on the assessment and treatment of predisposing and precipitating factors (Close & Long, 2012; Ross, 2001; NCI #7, 2014) 19
20 Staff training-2 Critical Interventions/Actions - Delirium Patients with agitated or hyperactive delirium may be treated with Haloperidol (Close, J, Long, CP) Provide for a safe and calm environment and use of other nonpharmacologic treatments help minimize agitation. Terminal delirium is extremely common in the last days of life and is treated with supportive care. Patients with a significant change in arousal level, orientation and cognitive function may be experiencing delirium. 20
21 Tools - Delirium CAM Confusion Assessment Method validated in multiple patient age groups and settings Adapted from: Inouye SK, et al. Ann Intern Med. 1990; 113: Confusion Assessment Method. Copyright 2003, Hospital Elder Life Program, LLC. Not to be reproduced without permission Memorial Delirium Assessment Scale (MDAS) is used to rate the severity of delirium. 21
22 Other Resources Delirium See VNAA Procedure Manual 18 th Edition p 179 for further information and references. See e 22
23 Depression Depression is a mood disorder that is clinically manifest as diminished interest/pleasure, depressed mood, loss of pleasure in almost all activities. Depression occurs in 25-75% of those at the end of life. Depression should never be ignored. 23
24 Critical Interventions/Actions - Depression Incorporate a depression screening tool into documentation to be used for all patients. Suicide assessment may be indicated for individuals with suicidal ideations or tendencies. A multi-symptom assessment tool that includes assessments of well-being as well as depression can be helpful. Treatment resources can be identified both internally and externally in the community. 24
25 Critical Interventions/Actions - Staff Training should include: Depression Assessment that includes physical changes such as loss of appetite, weight loss, situational factors, and medications. There are two classic questions to ask the patient: (1) In the past month, have you felt depressed, down or hopeless? and (2) During the past month, have you felt little interest or pleasure in doing things? Antidepressants are the primary medications used to treat depression. In the final days/hours additional medications are likely not indicated. 25
26 Tools/Resources See VNAA Procedure Manual 18 th Edition p Geriatric Depression Scale- a basic screening measure for depression in older adults. 26
27 Fatigue Fatigue is the patient experience of overwhelming exhaustion and tiredness and is reported in up to 90 percent of patients at the end of life. (Anderson, et.al.) It is a major source of frustration and devastation for patients as they near end-of-life. 27
28 Critical Interventions/Actions - Fatigue Fatigue assessment of the whole person is essential: mind, body and spirit (Anderson, et.al. 2010) Utilize a fatigue assessment tool to help document decline. 28
29 Critical Interventions/Actions - Fatigue Staff Training should include: Management strategies including management of symptoms and underlying causes. Preventing fatigue by balancing activities with rest. Energy conservation techniques and rest are the mainstay of nonpharmacologic management. Fatigue may arise from medical treatment or psychological conditions. 29
30 Critical Interventions/Actions - Fatigue Staff training - 2 For a patient expected to be in hospice care relatively long term, treatment may be offered to address underlying causes Possible pharmacologic interventions include: antidepressants, corticosteroids, psycho stimulants and medical treatments such as blood products. During the final hours, fatigue and weakness are expected as a normal part of the transition and is irreversible. This fatigue is treated with supportive care. 30
31 Tools- Fatigue Fatigue is a domain assessed in multi-symptom assessment tools such as the Edmonton Symptom Assessment (ESAS). Numerous fatigue scales exist, asking a patient s level of fatigue on a scale of 0 no fatigue to 10 extreme fatigue. It is efficient, especially if used consistently. A numeric rating scale can also be used to explain the impact of fatigue on activity and quality of life. 31
32 Hemorrhage Hemorrhage, or excessive bleeding is a relatively rare occurrence in hospice care according to the National Institutes of Health (NCI #12, 2014). It is more likely to occur with head and neck cancers, stomach and esophageal cancer, and leukemia or clotting disorders. It is very upsetting to patients and caregivers so should be anticipated based on the patient s diagnosis. 32
33 Critical Interventions/Actions - Hemorrhage If bleeding is anticipated it is important to prepare the caregiver and plan to follow the patient s wishes about interventions. Written information should be left in the home and the care plan updated to reflect patient s wishes. If the patient is at risk for terminal hemorrhage, discuss alternative care settings. Caregiver and patient education is crucial because of the distressing nature of heavy bleeding. 33
34 Critical Interventions/Actions - Staff education should include: Hemorrhage Seepage of blood from eroded areas may signify an impending hemorrhage, but more often, hemorrhage is sudden. Hemorrhage is signified by heavy bleeding. It may be uncontrolled, not self-limiting and not reversible at the end of life. Keep the patient clean; use dark colored towels or pad to minimize appearance of blood. 34
35 Critical Interventions/Actions - Staff education - 2 Hemorrhage Keep non-sterile gloves in the home to use if you need to clean up after any bleeding episodes. Provide companionship, empathetic listening and therapeutic presence. Medications should be present in the home that can provide sedation, anxiety relief and pain relief. Fast acting sedation may be used. 35
36 Nausea/Vomiting Nausea is the very unpleasant feeling of being about to vomit. Vomiting is the spitting up of the contents of the stomach. It s associated with a feeling of nausea and strong contractions of the abdominal muscles. It is one of the most distressing symptoms and can occur in patients with any terminal condition. There are many causes of nausea and vomiting. Nausea is present in 70% and vomiting in 30% of patients at the end of life. 36
37 Critical Interventions/Actions - Nausea/Vomiting Documentation should include a history and physical with primary attention to an abdominal assessment and identification of potential contributory factors. 37
38 Critical Interventions/Actions - Staff training should include: Nausea/Vomiting Underlying causes that can be treated if possible Non pharmacologic interventions should be included in the care plan. Many medications are available. 38
39 Wounds Wounds are open disruptions in skin integrity. Pressure ulcers occur in 14-28% of patients in hospice care (McDonald and Lesage 2006) while malignant or fungating wounds occuring in 5-19% of patients with metastatic disease (Alexander 2009). 39
40 Critical Interventions/Actions - Wounds Documentation should include identification of all wound locations, etiology, pressure ulcer stages and risk factors. Evaluation should include the existence of pain, infection, odor, and moisture due to incontinence. Goals of care should be discussed with the patient and caregiver to help determine what interventions are needed. Depending on treatment preferences, antibiotics are a consideration when an infection is present. 40
41 Critical Interventions/Actions - Wounds Staff training should include: Occlusive or layered dressings used to prevent seepage or odors. Training caregivers to provide frequent changing of bandages that may improve the appearance of wounds. In the patient s final days or hours it may be a treatment preference not to routinely reposition the patient. Some patients enter hospice with existing wounds. Others may acquire wounds such as pressure ulcers that result from immobility, poor nutrition and poor perfusion. 41
42 Tools Braden Scale A widely used tool to predict the risk of pressure ulcers. Six criteria are examined: Sensory perception; Moisture; Activity; Mobility; Nutrition and Friction and Shear. See VNAA Procedure Manual 18 th Edition Section
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