Diana J. Wilkie, PhD, RN, FAAN
To the Instructor: This Power Point presentation is a suggested slide presentation that can be used for lecture.It is made from the information on Instruction Material/ Content from TNEEL CD-ROM.The presentation might includes some audio sound and video clips. Click the red button to play the sound or video if any. For some sets of slides, there will be suggestions and detail descriptions throughout this Power Point presentation in the Notes Page.These notes are for instructors use only, and are not intended for distribution to the students. Thank you for using TNEEL.We welcome any suggestions. Diana J. Wilkie, PhD, RN, FAAN Signs & Symptoms of Approaching Death
The dying process is variable depending on individual and family characteristics There are predictable physical, physiologic, and emotional changes During this important phase, the nurse serves as a consultant, collaborator, coach, or guide to assist the patient to achieve symptom relief Knowing what to expect is vital The dying process is variable depending on individual and family characteristics but there are predictable physical, physiologic and emotional changes that occur during the final days and hours of life. During this important phase of end-of-life care, the nurse serves as a consultant, collaborator, coach or guide to assist the patient to achieve symptom relief. Also the nurse helps the patient and family to prepare for the approaching death. Knowing what to expect is vital for the nurse to meet patient and family needs before, at, and after the death. 1 Cardiovascular disease 2 Cancer 3 Cerebrovacular diseases
Causes of Death The three leading causes of death in adult Americans: 1 Cardiovascular disease 2Cancer 3Cerebrovacular diseases The three leading causes of death in adult Americans continue to be cardiovascular disease, cancer, and cerebrovascular disease. Signs & Symptoms of Imminent Death
System Circulatory Pulmonary Etiology of Failure Myocardial infarction, arrhythmias, blood loss Pneumonia, thromboembolism, pleural effusion, pulmonary edema, pulmonary or tracheal obstruction, depression of medullary respiratory centers Signs Reduced tissue perfusion (decreasing blood pressure, tachycardia, irregular pulse, reduced mentation, cooling and cyanosis of the extremeties, reduced urinary output, pulmonary and peripheral edema) Hypoxia with hypercapnia (slowed mentation, confusion, restlessness, coma) Orthopnea, irregular or rapid breathing, tachycardia, use of accessory muscles to breathe, excessive secretions Symptoms Chest pain, dyspnea Apprehension, dyspnea, cough, fear of choking or drowning Irreversible failure of body systems leads to death but the cause of death is always cardiopulmonary failure. Death occurs when the heart or the lungs fail to perfuse and oxygenate vital tissues. Circulatory failure or pulmonary failure precedes death. This table lists the best indicators of imminent death, which are the signs or symptoms of cardiovascular and respiratory failure. Physical, Physiological & Emotional
Anticipating the changes and symptoms and preparing the patient and family to expect and deal with them decrease the uncertainty that often plagues this time of life Death In the final days and hours before death, a number of signs and symptoms occur in a predictable pattern. Changes in daily habits and bodily functions and decline in functional status are observable and often distressing to the patient and family. Anticipating the changes and symptoms and preparing the patient and family to expect and deal with them decrease the uncertainty that often plagues this time of life. Eating A few people continue their dietary habits until they die. The typical dying person, however, stops eating all but a few bites of favorite foods. Family members often attempt to force the person to eat, creating conflict and turmoil. An important role for the nurse is to help the family to recognize that the disease results in swallowing difficulties, food digestion problems, or lack of energy or desire to eat. Instead of focusing feeding the dying person, the family can focus on providing comfort give ice chips, frequent sips of fluids, cleanse the mouth and moisten lips.These comfort care actions can replace the giving of food when the dying person refuses food or is unable to eat. Drinking and hydration - The typical dying person also stops drinking all but a few sips of water or a favorite beverage. Thirst is not usually a problem, but a dry mouth is extremely uncomfortable. Oliguria Renal failure is a common sign of impending death. Low urinary output less than 30 cc/day or concentrated urine is a sign of renal shutdown. Incontinence may also occur. Difficulty breathing Dyspnea, productive cough, and rattling breathing are examples of changes in breathing that predict the last days of life. Cooling and cyanosis of extremities Circulatory collapse is indicated by cooling of the extremities and subsequently by cyanosis.The usual pattern is for the feet to be cold and to have a purple-blue mottled appearance.The cooling and discoloration spreads up the legs and the hands become cold and cyanotic. Decreased consciousness Alertness is difficult to maintain as body systems function at less than optimal.The balance of oxygen and carbon dioxide, both of which are altered with cardiopulmonary compromise, affects the level of consciousness. Sleepiness, indifference and possible disorientation lead to decreased level of consciousness. Other signs Disorientation, restlessness and changes in vital signs are other indicators of impending death. Patterns in vital signs that reflect the imminent death include subnormal temperature; decreased then increased irregular and then absent pulse rate; decreased and then absent blood pressure, and increased, irregular and then decreased with apnea respiratory rates. Less Uncertainty Anticipating Signs of Approaching Death: The Last 48 Hours
1. Reduced level of consciousness 2. Taking no fluids or only sips 6. Bubbling sounds in throat and chest (death rattle) 3. No urine output or small amount of very dark urine (anuria or olgiuria) In the last days and hours before death, the nurse learns to predict imminent death based on assessments that include astute observations of the patients physical condition as well as the behavioral and emotional responses. The signs of approaching death in the last 48 hours include: Reduced level of consciousness Taking no fluids or only sips No urine output or small amount of very dark urine (anuria or olgiuria) Progressing coldness and purple discoloration in legs and arms Laborious breathing; periods of no breath (Cheyne-Stokes breathing) Bubbling sounds in throat and chest (death rattle). 5. Progressing coldness and purple discoloration in legs and arms 4. Progressing coldness and purple discoloration in legs and arms (Blues & Zerwekh, 1984) Uncommon Uncontrollable Events Prior to Death
Uncontrollable pain (when thepain was controlled prior to death) Human Senses: Pain Fatal Hemorrhage Seizures Fatal Seizure The uncommon but distressing events prior to death include Uncontrollable Pain when the pain was well controlled prior to death Fatal hemorrhage Seizures Dying Persons Bill of Rights
I have the right to be treated as a living human being until I die. I have the right to maintain a sense of hopefulness, however, changing its focus may be. I have the right to be cared for by those who can maintain a sense of hopefulness, however challenging this might be. I have the right to express my feelings and emotions about my approaching death, in my own way. The Dying Persons Bill of Rights inlcude: I have the right to be treated as a living human being until I die. I have the right to maintain a sense of hopefulness, however, changing its focus may be. I have the right to be cared for by those who can maintain a sense of hopefulness, however challenging this might be. I have the right to express my feelings and emotions about my approaching death,in my own way. I have the right to participate in decisions concerning my care. I have a right to expect continuing medical and nursing attention even though cure goals must be changed to comfort goals. I have the right to participate in decisions concerning my care. I have a right to expect continuing medical and nursing attention even though cure goals must be changed to comfort goals. Dying Persons Bill of Rights II
I have a right not to die alone. I have a right to be free from pain. I have a right to have help from and for my family accepting my death. I have the right to die in peace and dignity. I have the right to retain my individuality and not be judged for my decisions, which may be contrary to the beliefs of others. I have the right to discuss and enlarge my religious and/or spiritual experiences regardless of what they may mean to others. I have the right to expect that the sanctity of the human body will be respected after death. I have a right not to die alone. I have a right to be free from pain. I have a right to have my questions answered honestly. I have a right not to be deceived. I have a right to have help from and for my family accepting my death. I have the right to die in peace and dignity. I have the right to retain my individuality and not be judged for my decisions, which may be contrary to the beliefs of others. I have the right to discuss and enlarge my religious and/or spiritual experiences regardless of what they may mean to others. I have the right to expect that the sanctity of the human body will be respected after death. I have a right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death. I have a right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death. Signs of Death Cessation of heart beat and respiration
Pupils fixed and dilated No response to stimuli Eyelids open without blinking Decreasing body temperature Jaw relaxed and slightly open Body color is a waxen pallor The signs of death are listed in this slide. (Note to instructor: Read the list.) After Death Care: Various Cultural & Religious Groups
Cultural and religious beliefs and practices are important to nursing care at the end-of-life and immediately after death The following tables offer a common rituals and customs for the following cultural and religious groups: American Indians, African Americans, Mexican Americans, Catholics, Buddhists and Jews Cultural and religious beliefs and practices are important to nursing care at the end-of-life and immediately after death. The following slides summarize common rituals and customs for several cultural and religious groups. Death Rituals & Customs Observed: American Indians
Cultural Group American Indians Ritual or Custom at Time of Death Ritual or Custom at Time of Death Family may hug, touch, sing, stay close to the dead person Wailing, shrieking and other outward signs of grieving many occur, a startling contrast in demeanor compared to pre death display of positive attitudes Ritual or Custom Immediately After Death Family may hug, touch, sing, stay close to the dead person Wailing, shrieking and other outward signs of grieving many occur, a startling contrast in demeanor compared to pre death display of positive attitudes Turning or flexing the body, sweetgrass smoke or other purification Family stays with the body Some want the body to rest at place of death for 36 hours to allow the soul to depart.Women may want to prepare and dress the body Some do not allow the mortuary to prepare the body. The family wraps the body for burial Some avoid contact with the dead person and his/her possessions. Others want all possessions including collected hair and nail clippings Autopsy not desired Hair cutting may be done as a sign of mourning (Note to instructor: Read the list.) Death Rituals & Customs Observed: African Americans
Cultural Group African Americans Ritual or Custom at Time of Death Ritual or Custom Immediately After Death Family may hug, touch, and be close to family and friends May get agitated or emotional when anxious Person may be brought to hospital when death is imminent Report death to oldest family member, spouse or parent Open and public emotions expected after death May believe that death at home brings bad luck Prefer to have body cleaned by professionals Cremation avoided Organ and blood donations not common (Note to instructor: Read the list.) Death Rituals & Customs Observed: Mexican Americans
Cultural Group Mexican Americans Ritual or Custom at Time of Death Ritual or Custom Immediately After Death Extended family members obligated to visit dying person Spirit may get lost in hospital and not return home Prayers at bed of dying person Wailing is acceptable as a sign of respect Death important spiritual event Extended family may help prepare body Family says good-bye before dead person is taken to the morgue Organ donation not accepted Autopsy must be decided by entire family, usually not accepted (Note to instructor: Read the list.) Death Rituals & Customs Observed: Religions
Spiritual or Religious Group Buddhist Catholic Jewish Ritual or Custom at Time of Death Dying persons state of mind at moment of death influences rebirth Many diverse rituals including last rite chanting at bedside, family members remaining with body Cremation often preferred Pregnant women should avoid funerals Priest, monk or layperson may carry out traditions Permissible to refuse treatment that carries risk or would prolong a burdensome life Euthanasia forbidden Sacrament of the Sick [Extreme Unction] mandatory Organ or body donation allowed All body parts must be buried together Body may be ritually washed by members of Ritual Burial Society Cosmetic restoration or embalming discouraged Burial as soon as possible; cremation not appropriate Euthanasia prohibited; autopsy permitted if legally required (Note to instructor: Read the list.) Dyspnea Dyspnea is defined as:
Difficult or labored breathing From the perspective of the patient: An unpleasant awareness of breathing,a sense of breathlessness or sensationof shortness of breath Dyspnea is a subjective experience, like pain Only the person experiencing it can know exactly what it feels like Health professionals show a great deal of ambiguity in the interpretation of dyspnea Dyspnea is defined as difficult or labored breathing. Dyspnea can be observed to some extent, but it is a subjective experience, like pain; only the person experiencing it can know exactly what it feels like. Defined from the perspective of the patient, dyspnea is an unpleasant awareness of breathing, a sense of breathlessness or sensation of shortness of breath.Like pain, this term means different things to different people, and careful measurement of the symptom is needed. Health professionals show a great deal of ambiguity in the interpretation of dyspnea because it is an inadequately defined, multidimensional symptom. Different professionals focus on some dimensions and others focus on other aspects of the complex phenomenon. For example, tachypnea is not dyspnea but some professionals use tachypnea as an indicator of dyspnea.In the dying person able to communicate, dyspnea can be defined, measured and treated as a subjective experience.In the dying person not able to communicative, the presence of dyspnea is likely to be observable, but its the magnitude has not be measured with reliable results. Dyspnea: Mechanisms & Etiology
Dyspnea is a symptom associated with a number of diseases and conditions Example: Obesity is associated with dyspnea on exertion Increased ventilatory demand, impaired mechanical responses, and combinations of the two lead to dyspnea Dyspnea at rest contributes to social isolation and decreased quality of life The neural mechanisms of dyspnea are unknown It is known that delta opioid receptors are present in lung tissues, which may partially explain the effectiveness of opioids in treatment of dyspnea Dyspnea is a symptom associated with a number of diseases and conditions (Table 9).For example obesity is associated with dyspnea on exertion. Increased ventilatory demand, impaired mechanical responses, and combinations of the two lead to dyspnea. Exertional dyspnea leads patients with life-threatening illnesses to curtail progressively their activities often to the point that they cannot even talk because of dyspnea. Dyspnea at rest is particularly problematic and contributes to social isolation and decreased quality of life. The neural mechanisms of dyspnea are unknown but peripheral and central mechanisms are implicated by the complexity of the sensation.It is known that delta opioid receptors are present in lung tissues, which may partially explain the effectiveness of opioids in treatment of dyspnea. Prevalence of Dyspnea by Disease
Chronic ObstructivePulmonary Disease (COPD) Congestive Heart Disease Stroke Amyotropic Lateral Sclerosis Dementia Outpatient Cancer Terminal Cancer Lung Cancer Prevalence of Dyspnea 95% 61% 37% 47% to 50% 70% 50% 45% to 70% 90% This slide shows the prevalence of dyspnea in several different diseases, illnesses or populations. Dyspnea is a common symptom. (Dudgeon, 2001) Dyspnea: Assessment Visual analogue scales and 0 to 10 number scales successfully measure the intensity of the dyspnea sensation It is important to seek intensity ratings with various levels of activity (pattern of dyspnea) Walking outside, walking up stairs, eating, talking etc. Verbal descriptors such as chest tightness may prove useful in the future with additional research Dyspnea associated with life threatening illness evokes affective responses including: Panic, frustration, worry, anxiety, anger, and depression Visual analogue scales and 0 to 10 number scales have been used successfully to measure the intensity of the dyspnea sensation. Given the propensity of patients to alter their activities in response to the magnitude of their dyspnea, it is important to seek intensity ratings with various levels of activity (pattern of dyspnea), such as walking outside the house, walking up stairs, walking in your home or room, eating, or talking. Verbal descriptors of dyspnea quality such as chest tightness or deep may prove useful in the future with additional research. Observed use of accessory muscles has correlated with dyspnea intensity ratings. Dyspnea associated with life threatening illness evokes affective responses including panic, frustration, worry, anxiety, anger, and depression. Dyspnea: Pharmacologic Management
Primary control of dyspnea in people with life threatening illness includes: Treatment for the underlying etiology of the dyspnea (when possible), and treatments focused on symptom relief Opioids, corticosteroids, and anxiolytics have been effective in reducing dyspnea sensation Morphine treatments for those without pain: Typically 2.5 mg to 5 mg orally every four hours and a double dose at bedtime will control dyspnea in most patients Increase based on patient response Primary control of dyspnea in people with life threatening illness includes treatment for the underlying etiology of the dyspnea when possible and treatments focused on symptom relief. For example, dyspnea related to congestive heart failure requires medications to reduce cardiac workload and to promote cardiac function.As well opioids, corticosteroids, and anxiolytics have been effective in reducing the sensation of dyspnea. Dyspnea in the person without pain is relieved by small doses of morphine.Typically 2.5 mg to 5 mg orally every four hours and a double dose at bedtime will control dyspnea in most patients. Increasing the dose based on patient response (titration) may be necessary for some patients.Rarely do patients require doses in excess of 15 mg to 20 mg orally every four hours to relieve their dyspnea. Close monitoring is needed when using morphine or other opioids in people nave to opioids especially those with chronic lung diseases. Nebulized morphine has been investigated as a treatment for dyspnea, but research is insufficient to recommend this treatment at this time. Dyspnea: Pharmacologic Management II
Corticosteroids such as dexamethasone 8 mg daily also relieve dyspnea associated with an inflammatory response Superior vena cava syndrome and pulmonary metastatic lymphadenopathy Chlorpromazine reduces dyspnea without affecting ventilation or causing sedation Effective alone or combined with morphine for treatment of dyspnea in COPD or advanced cancer Scopolamine effectively reduces secretions and also sedates the patient. The effective dose of scopolamine is 0.4 mg to 0.6 mg I.M. every four hours, or 2 mg to 4 mg every 24 hours by continuous subcutaneous infusion Transdermal patches deliver 0.5 mg every 24 hours for a period of 72 hours Corticosteroids such as dexamethasone 8 mg daily also relieve dyspnea associated with an inflammatory response.Superior vena cava syndrome and pulmonary metastatic lymphadenopathy are two examples of conditions in which corticosteroids are likely to relieve dyspnea. Chlorpromazine reduces dyspnea without affecting ventilation or causing sedation.This drug has been effective alone or combined with morphine for treatment of dyspnea in COPD or advanced cancer. Dyspnea in dying patients may result from their difficulty in managing oral secretions as a result of weakness, immobility, or fluid overload. Scopolamine effectively reduces secretions and also sedates the patient. The effective dose of scopolamine is 0.4 mg to 0.6 mg I.M. every four hours, or 2 mg to 4 mg every 24 hours by continuous subcutaneous infusion.A more manageable method is administration of scopolamine as a transdermal patch.Each patch delivers 0.5 mg every 24 hours for a period of 72 hours. A therapeutic effect usually is obtained with 3 to 5 patches used simultaneously. The patch should be changed every 72 hours. (Schiro, 1992) Dyspnea: Nonpharmacologic Management
Oxygen Increasing air movement A portable fan directed towards patients face Positions that increase the ventilatory capacity Improve the function of the diaphragm and accessory muscles Avoid all activity, including talking Oxygen is a nondrug, medical treatment that can be effective in relieving dyspnea in some conditions associated with hypoxia. Dyspnea without hypoxia is may or may not be improved with oxygen. The goal of oxygen therapy for dyspnea are to reduce the dyspnea sensation and maintain a PAO2 of 55 to 60 mm Hg and oxygen saturation of 88% to 90%. Use of nasal cannula for oxygen delivery appears to be more beneficial than an oxygen mask perhaps because of the sensation of directed airflow and a perception of less confinement with the nasal cannula. Similarly, increasing air movement by use of a portable fan directed near the patients face is an efficient means relieving dyspnea in some patients. This technique increases the sensation of air circulation and reduces the sense of suffocation in the person with dyspnea. Positions that increase the ventilatory capacity by improving the function of the diaphragm and the accessory muscles are effective in reducing mild to moderate levels of dyspnea. The final activity-related way that patients cope with unrelieved dyspnea is to avoid all activity, including talking. Reducing activities, however, limits the dying persons ability to meet other important end-of-life goals.When dyspnea is so severe that breathing and talking cannot be done at the same time, the persons quality of life is very compromised. Patients with dyspnea tend to breathe inefficiently and in doing so to consume more energy than necessary. They take short, shallow, gasping breaths and use accessory muscles rather than the diaphragm muscle to facilitate inhalation and exhalation. Teaching patients how to take slow, deep breaths using the diaphragm and to exhale slowly through pursed lips helps them to overcome inefficient breathing, which improves their oxygenation and reduces dyspnea. Slow exhalation means that exhaling should take twice as long as inhaling. Use of the diaphragm and pursed-lips to breath provides several benefits, such as reducing respiratory rate, increasing tidal volume, and increasing functional residual capacity. Teach the patient to place his/her fingers just below the sternum, to sniff, and to feel the diaphragm muscle move. Alternatively, ask the patient to recline supine with knees bent, to place a book over his/her abdomen, and to inhale. The book moves upward allowing the patient to see the effect of the diaphragm descending, which forces expansion of the abdominal muscles. Inhaling sufficiently to raise the additional weight of the book also helps to strengthen the diaphragm muscle. The patient should practice this procedure using pursed-lip breathing. Fatigue and Weakness (Asthenia)
Fatigue is a common symptomexperienced by people with lifelimiting illness As illnesses progress, fatigue causespeople to curtail first the pleasurableand leisure activities and then otheractivities of daily living The dying person may not have sufficient strength or energy to flush a toilet The impact of these activity restrictions compromises the persons quality of life Fatigue is a common symptom experienced by people with life limiting illness. As illnesses progress, fatigue causes people to curtail first the pleasurable and leisure activities and then other activities of daily living. As the end of life approaches, the dying person may not have sufficient strength or energy to flush a toilet. The impact of these activity restrictions compromises the persons quality of life. (Dean & Anderson, 2001) Prevalence of Fatigue by Disease
Coronary ArteryDisease Cancer Renal Hemodialysis General Palliative Care AIDS Children with Cancer Prevalence of Fatigue 41% to 77% 60% to 99% 72% 51% 50% This slide shows the prevalence of fatigue in many different conditions and populations. (Dean, 2001) Fatigue: Mechanisms & Etiology
Fatigue is conceptualized as a multifaceted symptom with physiological, sensory, affective, cognitive, and behavioral components Several theories have been proposed to explain the fatigue associated with various illnesses Unknown: Whether the mechanisms are similar or different by disease Some evidence that is inconclusive, includes: Accumulation of lactate or cytokines, anemia with depletion of red blood cells or hemoglobin, or neural mechanisms The mechanisms of fatigue have been postulated but are not clearly understood. Fatigue is conceptualized as a multifaceted symptom with physiological, sensory, affective, cognitive and behavioral components. Several theories have been proposed to explain the fatigue associated with various illnesses. Whether the mechanisms are similar or different by disease is not known.Accumulation of lactate or cytokines, anemia with depletion of red blood cells or hemoglobin, or neural mechanisms are contending postulates that are substantiated by some but not conclusive evidence. Fatigue: Assessment Many assessment tools to measure fatigue
Some are multidimensional, comprehensive measures of fatigue Screening tools such as the Schwartz Cancer Fatigue Scale As with pain, fatigue assessments that focus only on the intensity of the fatigue provide limited perspective Assessing the following are critical: Location (parts of body sensed as fatigued), intensity (0 to 10 scale or other intensity scale), quality (how the fatigue feels), and pattern (onset, duration, aggravating factors, alleviating factors) Additional data about the patients history, physical exam, or laboratory findings Many assessment tools have been used to measure fatigue. Some of these tools are multidimensional, comprehensive measures of fatigue.Other tools are screening tools such as the Schwartz Cancer Fatigue Scale. As with pain, fatigue assessments that focus only on the intensity of the fatigue provide limited perspective on the fatigue experience and are insufficient to guide interventions.Assessing the location (parts of body sensed as fatigued), intensity (0 to 10 scale or other intensity scale), quality (how the fatigue feels), pattern (onset, duration, aggravating factors, alleviating factors) are critical parameters. Additional data about the patients history, physical exam, or laboratory findings may provide additional insight into the etiology of fatigue in the dying person.Assessing fatigue in caregivers is also important. Schwartz Cancer Fatigue Scale: A 6-Item Screening Tool for Fatigue
SCFS-6 1 = not at all 2 = a little 3 = moderately 4 = quite a bit 5 = extremely The words and phrases below describe different feelings people associate with fatigue.Please read each item and circle the number that indicates how much fatigue has made you feel in the past 2 to 3 days. Tired Difficulty thinking Overcome Listless . Worn out Helpless The Schwartz Cancer Fatigue Scale (SCFS): A 6-Item Screening Tool for Fatigue. (1997 A. L. Schwartz) Fatigue: Pharmacologic Management
Virtually no information is available regarding pharmacologic management of fatigue Exception: People with chronic renal failure or cancer In these two populations, fatigue has been reduced by the epoetin, which stimulated red blood cell production Pharmacologic management of fatigue is an understudied area and virtually nonexistent related to end-of-life care Virtually no information is available regarding pharmacologic management of fatigue except in people with chronic renal failure or cancer in which epoetin was used to stimulate red blood cell production.In these two populations, fatigue has been reduced by the epoetin. In one small study, methylphenidate reduced fatigue in people experiencing mild levels of opioid induced sedation. Similar findings have been noted by other investigators. Many experts advocate use of pharmacologic agents to relieve other symptoms that can contribute to fatigue. Pharmacologic management of fatigue is an understudied area and virtually nonexistent related to end-of-life care. (Littlewood, 2001) Fatigue: Nonpharmacologic Management
Many interventions are suggested to alleviate fatigue, but with theexception of exercise, none havebeen tested Exercise, in most cases, is a neglected area of the treatment plan for people facing the end-of-life transition Health care providers often fail to advise patients about exercise and the benefits that can be gained from it Inactivity may in fact be the trigger for marked fatigue and weakness experienced by patients Many interventions are suggested to alleviate fatigue, but with the exception of exercise, none have been tested. Exercise, in most cases, is a neglected area of the treatment plan for people facing the end-of-life transition. Health care providers often fail to advise patients about exercise and the benefits that can be gained from it. Inactivity may in fact be the trigger for marked fatigue and weakness experienced by patients. Fatigue: Nonpharmacologic Management II
Aerobic exercise may prevent reduced functional capacity, nausea, fatigue, decreased self-esteem, and other quality of life issues that confront cancer patients Balancing energy reserves with energy expenditures is the goal for the management of fatigue Walking and other types of low-impact exercise Weight training early in the illness trajectory to improve muscle tone and function, particularly in the elderly Distraction techniques may reduce fatigue Taking car rides, listening to music, praying, meditating, engaging in hobbies, spending time with family and friends Benefits of both aerobic and resistance types of exercise are well-documented in the general population, and a growing body of evidence suggests that aerobic exercise may prevent reduced functional capacity, nausea, fatigue, decreased self-esteem, and other quality of life issues that confront cancer patients. Tests of structured aerobic exercise programs for previously sedentary cancer patients demonstrate that exercise is safe; that patients who are receiving chemotherapy exhibit a training effect; and that exercise produces positive psychosocial effects. Balancing energy reserves with energy expenditures is the goal for the management of fatigue. In the person facing the end-of-life transition, primary goals are to maintain what the patient can do for as long as possible and minimize loss. Walking and other types of low-impact exercise should be maintained as long as possible. Energy management involves assessing the patients status, deciding which energy-using activities can and cannot be altered and planning energy conserving methods to aid the patient. Patients can be taught to view their energy stores as a bank.Deposits and withdrawals must be planned.It is important to foresee daily and weekly activities and to then plan around them in order to ensure that enough energy will be left for important activities.It may be necessary to modify or replace activities that require more energy than available to the patient. An intriguing idea is to use weight training early in the illness trajectory to improve muscle tone and function, particularly in the elderly. Fiatarone found that individuals in their 80s and 90s quickly lost muscle tone with inactivity and reported exacerbated feelings of fatigue. Significant benefit on muscle tone, the ability to carry out more necessary daily activities, feelings of well-being, and decreased fatigue resulted from a brief period of daily training with very light weights. Similar results were noted in residents of nursing homes. Distraction techniques may reduce fatigue. Taking car rides, listening to tapes or soft music, praying, meditating, engaging in hobbies, spending time with family and friends are examples of distraction activities that divert the persons attention and some include activities that allow some level of exercise. Prevalence of Constipation
Population Group Adults with Cancer Diabetes Children with Cancer Older Adults Children General Population Prevalence of Constipation 78% 10% to 17% 6 to 50% 72% 11% 10 to 28% Constipation is frequently experienced by many patient groups as indicated in this slide. (Collins, 2000) Constipation: Mechanisms & Etiology
Constipation is a problem for many peoplewith life-limiting illness There are many causes of constipation: Mechanical, metabolic and neural processesassociated with the life threatening disease Dietary alterations Immobility Drug therapy side effects and combinations of these factors are the typical etiologies of constipation at end of life Its prevention is easier and more desirable to all involved than treatment after it occurs Constipation is a problem for many people with life-limiting illness. There are many causes of constipation in persons facing the end of life transition. Mechanical, metabolic and neural processes associated with the life threatening disease, dietary alterations, immobility, drug therapy side effects and combinations of these factors are the typical etiologies of constipation at end of life. Constipation is one of the most distressing symptoms experienced by dying people and their families and its prevention is easier and more desirable to all involved than treatment after it occurs. Constipation: Assessment
McMillan and colleagues developed and tested a simple 8-item tool to measure self-reported constipation Establishing the persons normal pattern prior to the illness is also important to judge the degree to which current bowel patterns are altered Bowel functions are variable from person to person Establishing the baseline pattern for the person with life-limiting illness is a critical assessment not documented by the Constipation Assessment Scale Documentation of other history and physical exam data is essential McMillan and colleagues developed and tested a simple 8-item tool to measure self-reported constipation. Establishing the persons normal pattern prior to the illness is also important to judge the degree to which current bowel patterns are altered.Since normal bowel function is variable from person to person, establishing the baseline pattern for the person with life-limiting illness is a critical assessment not documented by the Constipation Assessment Scale. Documentation of other history and physical exam data is essential to high quality nursing care at the end of life. (McMillan & Williams, 1989) Constipation Assessment Scale
Directions: Circle the appropriate number to indicate whether during the past three days you have had NO PROBLEM, SOME PROBLEM or a SEVERE PROBLEM with each of the items listed Item 1. Abdominal distention or bloating 2. Change in amount of gas passed rectally 3. Less frequent bowel movements 4. Oozing liquid stool 5. Rectal fullness or pressure 6. Rectal pain withbowel movement 7. Smaller stool size 8. Urge but inability to pass stool noproblem someproblem 1 severeproblem 2 The Constipation Assessment Scale is very easy to use as indicated by the items listed on this slide. A score of * indicates treatment is needed. Patient history and physical exam data also helps the health professional to diagnose and treat the constipation symptom. Patient History Data Last bowel movement (when, how much, appearance, odor) Abdominal tenderness, cramping, pressure, pain Unexplained nausea or early satiety Medications (opioids, calcium channel blockers) Dietary and fluid intake Activity status Physical Exam Findings (possible meaning) Abdominal distension, bulges (ascites, gas, tumor or stool) Tympany on percussion (partial obstruction) Hemorrhoids, ulcerations, rectal fissures, impaction Bowel sounds:Absent for minimum of 5 minutes (paralytic ileus) Hyperactive (partial obstruction or diarrhea) Hypokalemia, hypercalcemia present Signs of spinal cord compression (McMillan & Williams, 1989) Constipation: Pharmacologic Management
Vigilance is required to prevent constipation The cornerstone of treatment: Anticipating that constipation will occur in people if dietary and fluid intake is altered Prevention of constipation requires the expectation that constipation will be a side effect of all opioids and many of the adjuvant analgesics Patients should expect a bowel movement no less than every three days regardless of intake and activity level Vigilance is required to prevent constipation. Anticipating that constipation will occur in people who have altered their dietary and fluid intake or activity because of advancing disease, is the cornerstone of treatment. Prevention of constipation requires the expectation that constipation will be a side effect of all opioids and many of the adjuvant analgesics. With this expectation instituting prophylactic management of constipation allows the symptom to be treated before it becomes distressing to the patient and family. Patients should expect a bowel movement no less than every three days regardless of intake and activity level. Constipation: Two Rules for Management
1.Anticipate and prevent constipation 2. Reverse specific cause of constipation with specific therapy There are two Rules for Management of Constipation 1. .Anticipate and prevent constipation. 2. Reverse specific cause of constipation with specific therapy. Constipation: Commonly Effective Pharmacologic Agents
Comments 1 tab reverses constipating effectof Morphine 15 mg po or 120 mgCodeine po.Activated in largeintestine by bacterial degradation,stimulates submucosal nerveplexus and reduces sodium andwater absorption Strong stimulation effects withcramping, urgency, incontinence Liver and colon metabolism; effectdifficult to predict and control. Generic Drug (Trade Drug) [Alternate Form] Senna (Senokot) [Senokot-S with docusate (Colace)] Casanthranol with docusate(Peri-Colace) Bisacodyl (Dulcolax) Lactulose (Chronulac) Phenolphthalein withdocusate (Doxidan) TypicalDose 1-8 (max 10)tabs pobased onopioid doseandresponse 1-4 tabs po mg po 10-15 mg pr 15-30 ml po 1-4 tabs po Onset ofEffect 6-12 hr 6 hr 15-60 min 1-3 hr Treatment of constipation in people with life-limiting illness usually requires use of a laxative with stimulant action and perhaps a stool softener.A stool softener alone is insufficient for people requiring opioid analgesics; they require a stimulant in order to overcome the actions of the opioid on the gastrointestinal tract.It is common for patients to be prescribed only stool softeners and for their providers to not understand why constipation is a problem. Large-bowel stimulant laxatives and osmotic laxatives are often effective treatments for constipation in people taking multiple drugs for symptom control at end of life. This slide lists treatment plans designed to prevent constipation as well as to restore usual bowel function. Constipation: Treatment Plan to Restore Bowel Function
Start with senna (Senokot, fruit paste), Peri-Colace or Doxidan If bowel movement does not occur within 24 hours, increase doses to BID or TID administration until maximum dose is reached If no bowel movement within 48 hours, add bisacodyl 2-3 tabs po HS to TID or Milk of Magnesia with cascara 30 cc po HS If no bowel movement within 72 hours and no rectal impaction, use water or oil retention enema or a bisacodyl suppository If disimpaction is needed, premedicate with an oil retention enema, an analgesic and a sedative Follow with a cleansing enema and an appropriate constipation-prevention plan This slide show one effective treatment plan that restores bowel function in people experiencing opioid-induced constipation. Read the slide content. (Levy, 1991) Constipation: Nonpharmacologic Management
If the patient is able to increase fluid intake or activity levels, there are effective nonpharmacologic treatments for constipation Increasing fluids to 1 to 1.5 liters per day and dietary fiber intake are recommended, but often not achievable goals as disease progression limits the persons intake and activity If a patient is not able to maintain adequate fluid intake, bulk laxatives may cause severe constipation or obstruction and are contraindicated Hospice nurses speak highly of this treatment plan: Using natural senna a part of the dietary intake (not supported by research) If the patient is able to increase fluid intake or activity levels, they are effective nonpharmacologic treatments for constipation. Increasing fluids to 1 to 1.5 liters per day and dietary fiber intake are recommended, but often not achievable goals as disease progression limits the persons intake and activity. If a patient is not able to maintain adequate fluid intake, bulk laxatives may cause severe constipation or obstruction and are contraindicated. Constipation: Anti-constipation Recipe
Yakima Valley Anti-Constipation Fruit Paste Dionetta Hudzinski, Hospice of Yakima 2 cups boiling water 3-4 oz senna tea leaves 1 lb pitted prunes 1 lb raisins Prepare tea: Add tea leaves to the boiling water and let steep for 5 minutes.Strain and remove tea leaves. Add fruit:Place 2 cups of tea in a large put.Add all the fruit to the tea.Boil fruit and tea for 5-10 minutes.Remove from heat. Add sugar and lemon juice and allow to cool. Use a hand mixer or food processor to turn fruit and tea mixture into a paste. Place in freezer containers and store in freezer.Paste will not freeze. Serving Ideas: spread on toast, eat straight from the spoon, mix with hot water, use asfruit topping on cereal. 1 lb pitted figs 1 cup brown sugar 1 cup lemon juice Although not supported by research, this slide shows a treatment plan to prevent constipation by using natural senna a part of the dietary intake of the person facing the end-of-life transition.Hospice nurses speak highly of this treatment plan. Patients often have their own remedies for constipation. If they are effective, they should be encouraged to use them unless there are contraindications. For example, Gypsy had always treated her constipation with sauerkraut juice.A small can, 4-6 ounces, once or twice per week was the only laxative she required until her death from lung cancer.She favored the taste and found it very effective in preventing constipation.Other patients have reported similar opinions. Adapted from WSCPI News, Spring, 1993, p. 10. Used with permission of Dionetta Hudzinski, MN, RN. Multiple Symptoms Successful treatment of symptoms requires collaboration of the patient, family, nurses, physicians, social workers, spiritual guide and other care providers In review of 1,000 patients, 50% experienced 11 or more symptoms with the number of symptoms experienced ranging from 1 to 27 Pain, fatigue, weakness, anorexia, lack of energy, dry mouth, constipation, early satiety, dyspnea, and greater than 10% weight loss were the 10 most prevalent symptoms Successful treatment of symptoms experienced by the person facing the end-of-life transition requires collaboration of the patient, family, nurses, physicians, social workers, spiritual guide and other care providers. Symptom management is a complex process requiring ongoing attention and diligence to promote comfort. Patients experience not just one symptom at end of life, but many symptoms. Walsh and colleagues found in review of 1,000 patients that 50% experienced 11 or more symptoms with the number of symptoms experienced ranging from 1 to 27. In this study, they found pain, easy fatigue, weakness, anorexia, lack of energy, dry mouth, constipation, early satiety, dyspnea, and greater than 10% weight loss were the 10 most prevalent symptoms. (Walsh, 2000) (Collins, 2000; Ng, 1998; Oliver, 1996; Wolfe, 2000)
Multiple Symptoms Other investigators note similar that not all symptoms are relieved to the satisfaction of the adult or child patient and the family Appropriate symptom management depends on the patient and the family working in partnership with the health care provider team The collaboration includes the patient and family and requires intradisciplinary and interdisciplinary efforts to understand the patients symptoms and to find successful treatments Other investigators have noted similar findings and that not all symptoms are relieved to the satisfaction of the adult or child patient and the family. Appropriate symptom management depends on the patient and the family working in partnership with the health care provider members of the team.Together the patient and family centered team participates in ongoing assessment directed at finding effective treatments for all the patients symptoms. The collaboration includes the patient and family and requires intradisciplinary and interdisciplinary efforts to understand the patients symptoms and to find treatments that will successfully relieve the symptoms. Ongoing assessment is facilitated by use of standardized tools to measure symptoms. The Symptom Distress Scale is an excellent tool that allows measurement of multiple symptoms (Table 18).This tool has been translated into several languages.Data from this tool allows the health care professionals to implement therapies targeted at symptom relief. Since multiple symptoms are commonly experienced by the person with a life-limiting illness, it is usual for multiple therapies to be needed. Careful attention to mechanisms of action and interactions is needed to prevent unnecessary toxicity from treatments. Often one therapy will produce an unpleasant side effect that requires another therapy for adequate relief. Effective symptom management requires the health professional team to have a strong commitment to total symptom relief, knowledge about therapy effects and side effects, and several types of skills. (Collins, 2000; Ng, 1998; Oliver, 1996; Wolfe, 2000) Multiple Symptoms: Necessary Skills
Assessment of single and multiple symptoms using standardized scales, interview history- taking, and physical exam techniques Management of pharmacologic and nonpharmacologic therapies Recognition and management of treatment-induced side effects Advocacy for patient-family-centered and collaborative care at end of life Patient and family education for them to fulfill their partnership roles Symptom management requires skills in Assessment of single and multiple symptoms using standardized scales, interview history- taking, and physical exam techniques. Management of pharmacologic and nonpharmacologic therapies. Recognition and management of treatment-induced side effects. Advocacy for patient-family-centered and collaborative care at end of life. Patient and family education for them to fulfill their partnership roles. Successful implementation of theses skills in roles that fit comfortably for the patient and family as well as the health care professional produces comfort at end of life that is acceptable to the patient, supportive of the family needs and desires, and professionally satisfying. Gypsy (Case section) is one example of successful symptom management that allowed a respectful death.She said, How can I be dying, I feel so good? Being part of a team that provides this type of care is a most satisfying professional experience for many nurses who have devoted themselves to caring for people facing the end-of-life transition. It is a privilege to use professional knowledge and skills to promote comfort in dying people and their families.