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.

Causes of death: The three leading causes of death in adult Americans continue to be cardiovascular disease, cerebrovascular disease, and cancer. 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. Table 1 lists the best indicators of imminent death, which are the signs or symptoms of cardiovascular and respiratory failure.

Table 1.� Signs and Symptoms of Imminent Death.¹

Physical, physiological, and emotional: In the final days and hours before death, a number of signs and symptoms occur in a predictable pattern.¹ 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.

In the last days and hours before death, the nurse learns to predict imminent death based on assessments that include astute observations of the patient�s physical condition as well as the behavioral and emotional responses. Table 2 summarizes the common signs of approaching death. Table 3 summarizes uncommon but distressing events prior to death. Table 4 provides 16 rights of the dying person. Table 5 lists the signs of death.

Table 2.� Signs of Approaching Death: The Last 48 Hours.

Adapted from: (p. 186).¹

Table 3.� Uncommon Uncontrollable Events Prior to Death.

Table 4.� The Dying Person�s Bill of Rights.

Table 5.� Signs of Death:

Table 6. Death Rituals and Customs Observed by Various Cultural Groups.� ⁷

NOTE: For a more complete explanation of diversity among ethnic and cultural groups as it affects nursing care, see Juliene G. Lipson, Suzanne L. Dibble, and Pamela A. Minarik, Culture and Nursing Care: A Pocket Guide (San Francisco: USCF Nursing Press, 1996).� Material in Table 6 was adapted from this Guide with permission.

Table 7. Spiritual and Religious Beliefs Influencing Death Customs ⁷

NOTE: For a more complete explanation of diversity among spiritual and religious beliefs as it affects nursing care, see Juliene G. Lipson, Suzanne L. Dibble, and Pamela A. Minarik, Culture and Nursing Care: A Pocket Guide (San Francisco: USCF Nursing Press, 1996).� Material in Table 7 was adapted from this Guide with permission.

In situations when the death is not expected or results from an unusual cause, an autopsy may be requested.� A family member must give permission for an autopsy unless it is required by law.� Typical reasons for an autopsy are listed in Table 8.

Table 8.� Benefits of Autopsies to Medical Practice and Science, the Judicial System, Public Welfare, and the Family.

In situations where death results from trauma or an illness in which organs could be donated for transplant into another person, care of the body after death focuses also on protection of the organs. Some organs must be transplanted soon after death (heart-lung 4-5 hours), others can be preserved for years (heart valves 5 years).⁸

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.

Mechanisms and etiology:� 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.

Table 9. Prevalence of Dyspnea by Disease.⁹

Assessment: 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.¹⁰ Dyspnea associated with life threatening illness evokes affective responses including panic, frustration, worry, anxiety, anger, and depression.

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. 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.¹¹ 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.¹¹ Close monitoring is needed when using morphine or other opioids in people na�ve 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.�

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.¹¹

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 (p. 167).¹¹

Nonpharmacologic management: 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 patient�s 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 person with dyspnea typically leans forward bracing his/her arms on a table, chair or knees in order to support his/her torso and reduce pressure on the chest. Sitting in a chair with feet wide apart and elbows resting on his/her knees is a position that also improves the sensation of dyspnea. These positions give the appearance of the patient hunching his/her chest into a barrel-like appearance. Ambulatory patients find dyspnea is lessened when they lean their hips against the wall, feet apart, and shoulders relaxed but bent slightly forward as they breathe slowly and steadily. Sitting or maintaining a high fowler�s position, sleeping in a recliner, avoiding bending and stooping are other position-related strategies that reduce dyspnea. Although these positions come automatically to many patients, it is a technique that can be taught to patients with sufficient energy to maintain these positions.

The final activity-related way that patients cope with unrelieved dyspnea is to avoid all activity, including talking. Reducing activities, however, limits the dying person�s 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 person�s 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.

Pursed-lip breathing also helps the patient focus on the breathing technique and thereby control the rate and depth of breathing, which helps to control panic associated with dyspnea.� The patient inhales slowly through the nose then exhales even slower through pursed lips. A soft, slow, whistling sound as the patient slowly exhales is an indication the patient is successful in his or her efforts to use pursed-lip breathing techniques. Breathing re-training can be helpful in reducing anxiety and the sense of helplessness

Several other strategies can be helpful in reducing dyspnea. Relaxation techniques help relax the tense muscles that demand much of the limited oxygen supply.� One technique involves the caregiver placing his or her hands on the patient�s shoulders, and then applying downward pressure to help relax the shoulders. Patients also can be taught to dangle their arms and rotate their shoulders in circles. Relaxation techniques tend to work best after the patient has regained a sense of control through effective breathing. Relaxation techniques also help to reduce the panic or anxiety often associated with dyspnea.� Progressive muscle relaxation is one method of relaxation that has been effective in reducing dyspnea. When a patient is anxious about dyspnea, it is important to instruct the family to remain with the patient and talk in a calm, reassuring tone.� Emotional support through physical presence and attendance is very reassuring.

Fatigue and Weakness (Asthenia)

Fatigue is a common symptom experienced by people with life limiting illness (Table 10). 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.¹² The impact of these activity restrictions compromises the person�s quality of life.

Table 10. Prevalence of Fatigue by Disease.¹²

Mechanisms and etiology:� 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.

Assessment: 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 (Table 11). 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 patient�s 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.

Table 11.� Schwartz Cancer Fatigue Scale (SCFS): A 6-Item Screening Tool for Fatigue.

SCFS-6

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 ........................... �� 1��������� 2��������� 3��������� 4��������� 5

Difficulty thinking .......��� 1��������� 2��������� 3��������� 4��������� 5

Overcome ...................��� 1��������� 2��������� 3��������� 4��������� 5

Listless .......................��� 1��������� 2��������� 3��������� 4��������� 5

Worn out ....................��� 1��������� 2��������� 3��������� 4��������� 5

Helpless .....................   1��������� 2��������� 3��������� 4��������� 5

©1997 A. L. Schwartz.� Permission is granted for use with appropriate acknowledgment.

Pharmacologic Management:� 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.^13-16 In one small study¹⁷, methylphenidate reduced fatigue in people experiencing mild levels of opioid induced sedation. Similar findings have been noted by other investigators.^{18, 19} 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.

Nonpharmacologic management: 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.^20-22 Inactivity may in fact be the trigger for marked fatigue and weakness experienced by patients. 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.^{20, 23-30} 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.^{20, 21, 23, 26-28, 31, 32}

Constipation

Table 12. Prevalence of Constipation.^36-43

Mechanisms and etiology:� Constipation is a problem for many people with life-limiting illness.⁴² 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.

Assessment:� McMillan and colleagues⁴⁴ developed and tested a simple 8-item tool to measure self-reported constipation (Table 13). Establishing the person�s 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.⁴⁴ Documentation of other history and physical exam data is essential to high quality nursing care at the end of life (Table 14).

Table 13. Constipation Assessment Scale.⁴⁴

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

Patient name���������������������������������������������������������������������������������Date

� 2001 Susan C. MacMillan, PhD, RN, FAAN used with permission.

Table 14.� History and Physical Exam Data Needed to Supplement the Constipation Assessment Scale.⁴⁵

Pharmacologic management: 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.

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. Table 15 lists treatment plans designed to prevent constipation as well as to restore usual bowel function.�

Table 15.� Commonly Effective Pharmacologic Agents for Constipation in People with Life-Limiting Illness. ⁴⁶

Click to view Figure 1.� Recommended Laxative therapy for Cancer-Associated Constipation⁴⁶

Nonpharmacologic management: 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 person�s 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.

Although not supported by research, Figure 2 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.

Click to view Figure 2. A Recipe for Yakima Valley Anti-Constipation Fruit Paste.

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.

Multiple 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 colleagues⁴² 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.⁴² 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.^{36, 43, 47, 48}

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 patient�s symptoms. The collaboration includes the patient and family and requires intradisciplinary and interdisciplinary efforts to understand the patient�s 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^{49, 50} is an excellent tool that allows measurement of multiple symptoms.� 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.

Symptom management requires skills in

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.

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