The goal of palliative care is to provide comfort and support for both patient and family through the course of a life-threatening illness. Symptom control is essential to meeting that goal. This topic discusses symptoms that commonly contribute to patients’ suffering in terminal illness: pain; respiratory, gastrointestinal, mouth, and skin problems; and delirium.
Although this topic focuses on physical and psychological symptoms, achieving symptom control requires the physician to address the patient’s suffering in all its aspects: physical, psychological, social, and spiritual. Physical distress cannot be effectively treated in isolation from the emotional and spiritual components that contribute to it, nor can these sources of suffering be addressed adequately when patients are in physical distress. The various components of suffering must be addressed simultaneously [see Clinical Essentials: XI Management of Psychosocial Issues in Terminal Illness].
Symptom Assessment
A full and formal symptom assessment is necessary before effective treatment can be instituted.1 Symptoms are inherently subjective2; therefore, patient self-reporting must be the primary source of information, and the clinician must believe what the patient says. If the patient is unable to report, a family member or professional can provide a surrogate assessment. However, several studies have demonstrated that observer and patient assessments are not well correlated.
To compensate for this inherent subjectivity, researchers have developed symptom measurement systems that are intended to quantify patients’ perceptions in a manner that is valid and reliable. Often, these measurement systems have taken the form of symptom checklists.5,6 For example, the Edmonton Symptom Assessment Scale5 comprises 14 questions that evaluate eight physical and psychological symptoms [see Table 1]. This scale has been extensively employed in palliative care research, in part because of its ease of use. Although the scale yields a numeric score (the higher the score, the more severe the patient’s condition), the formal scoring mechanism is used only in research. In clinical practice, the scale can be used informally to evaluate a patient’s status and follow it over time.
The Memorial Symptom Assessment Scale7 characterizes 32 physical and psychological symptoms in terms of intensity and frequency, as well as the level of distress from the symptoms [see Table 2]. Although the Memorial Symptom Assessment Scale provides a greater range of information than the Edmonton Symptom Assessment Scale, the former is correspondingly more time consuming to use.
Physical Symptoms
Pain
Diagnosis
Management of pain begins with a careful and detailed assessment [see 11:XIV Pain]. The goal of this assessment is to determine the location and character of the pain, define its cause (or causes), and develop a plan of care.
Pain cannot be measured objectively, and several studies have shown that medical care providers’ estimates of patients’ pain severity are significantly lower than the patients’ self-reports.8,9 Pain is independent of age, gender, marital status, physical function, and cognitive function.10 Therefore, the central guiding principle of pain assessment is to ask the patient and believe the patient’s description of pain.
Pain assessment in the elderly is often complicated by coexistent cognitive impairment. The cognitively impaired patient may be unable to express pain adequately or request analgesics and, therefore, is at increased risk for undertreatment of pain.11,12 As with cognitively intact patients, the first step in the assessment of pain in demented patients is to ask them about their pain. Although patients with severe dementia may be incapable of communicating, many patients with mild or moderate impairment can accurately localize and grade the severity of their pain,13 and these self-reports should be regarded as valid.
Untreated pain can result in agitation and disruptive behavior, and it may worsen or precipitate delirium, particularly in cognitively impaired patients.14,15 When delirium prevents communication with the patient, the physician may have to infer that pain is present and proceed with treatment.
Treatment
Opioids are the standard choice for treating pain in terminally ill patients. The physician who provides palliative care needs to have the confidence and competence to prescribe opioids at whatever dose is needed to control pain, as well as the skill to determine when adjuvant analgesics (e.g., antidepressant or anti-seizure medication) are needed to manage certain types of pain.16,17 Terminally ill patients are a special population, often suffering chronic pain and taking pain medications over longer periods of time and at higher dosages.18 Indeed, tolerance to opi-oids may require that they be used in amounts that would be fatal to the opioid-naive patient.
In a multisite study of terminally ill patients in the United States, Weiss and colleagues19 found that half of terminally ill patients experienced moderate to severe pain but that less than one third wanted additional pain treatment from their primary care physician. Reasons for not wanting additional therapy included dislike of analgesic side effects and not wanting to take more pills or injections. Some patients, however, mentioned fear of addiction. This is a common—and unwarranted—concern not only of patients but of some medical personnel, as well.
As the goals of care change in the course of a life-threatening illness, higher dosages of pain medication may be needed to achieve comfort. In the last days of life, relief of suffering may require sedation to the point of unconsciousness, a technique referred to as palliative sedation (see below).
Respiratory symptoms
Dyspnea
Shortness of breath has been described in 70% of cancer patients during the last 6 weeks of life20 and in 50% to 70% of patients dying of other illnesses.21 Ventafridda and colleagues22 observed "horrible and unpleasant" dyspnea in 10% of cancer patients dying in a palliative care unit. Like pain, dyspnea is a subjective symptom that may not correlate with any objective signs of respiratory compromise,23 and hence, its management can be challenging.
Table 1 Modified Edmonton Symptom Assessment Scale5
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1a. Please rate your pain now. |
5. |
How would you describe your feelings of depression over the past 3 |
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1. □ No pain |
days? |
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2. □ Mild pain |
1. □ Not depressed |
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3. □ Moderate pain |
2. □ Mildly depressed |
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4. □ Severe pain |
3. □ Moderately depressed |
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1b. Please rate your pain over the past 3 days. |
4. □ Very depressed |
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1. □ No pain |
6. |
How would you describe your feelings of anxiety over the past 3 days? |
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2. □ Mild pain |
1. □ Not anxious |
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3. □ Moderate pain |
2. □ Mildly anxious |
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4. □ Severe pain |
3. □ Moderately anxious |
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1c. Is your pain control acceptable to you? |
4. □ Very anxious |
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1. □ Very acceptable |
7. |
How would you describe your level of fatigue over the past 3 days? |
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2. □ Acceptable |
1. □ Not fatigued |
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3. □ Not acceptable |
2. □ Mildly fatigued |
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2. How would you describe your activity level over the past |
3. □ Moderately fatigued |
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3 days? |
4. □ Very fatigued |
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1. □ Very active |
8. |
How has your appetite been over the past 3 days? |
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2. □ Somewhat active |
1. □ Very good appetite |
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3. □ Minimally active |
2. □ Moderate appetite |
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4. □ Not active |
3. □ Poor appetite |
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3. How would you describe your amount of nausea over the past |
4. □ No appetite |
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3 days? |
9. |
How would you describe your sensation of well-being over the past 3 days? |
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1. □ Not nauseated |
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2. □ Mildly nauseated |
1. □ Very good sensation of well-being |
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3. □ Moderately nauseated |
2. □ Moderately good sensation of well-being |
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4. □ Very nauseated |
3. □ Not very good sensation of well-being |
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4a. How would you describe your level of constipation over the past 3 days? |
4. □ Poor sensation of well-being |
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10 |
How short of breath have you been over the past 3 days? |
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1. □ No constipation |
1. □ No shortness of breath |
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2. □ Mild constipation |
2. □ Mild shortness of breath |
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3. □ Moderate constipation |
3. □ Moderate shortness of breath |
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4. □ Severe constipation |
4. □ Very short of breath |
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4b. When was your last bowel movement? |
11. How has your physical discomfort been over the past 3 days? |
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1. □ Today |
1. □ No physical discomfort |
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2. □ Yesterday |
2. □ Mild physical discomfort |
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3. □ 2-3 days ago |
3. □ Moderate physical discomfort |
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4. □ More than 4 days ago |
4. □ Severe physical discomfort |
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It is important to diagnose and treat any underlying reversible causes of dyspnea. For example, dyspnea caused by congestive heart failure will require diuretics and inotropic support [see 1:II Congestive Heart Failure].
When therapy specific to the underlying cause is unavailable or ineffective, several techniques may alleviate breathlessness. Simple measures include pursed-lip breathing and diaphragmatic breathing, leaning forward with arms on a table, cool-air ventilation (from a fan or an open window), and nasal oxygen.
Opioids have been shown in numerous studies to be highly effective in the amelioration of dyspnea.24,25 In one study,24 morphine in doses sufficient to relieve dyspnea had no measurable adverse effect on respiratory rate or effort, oxygen saturation, and carbon dioxide concentration. Therefore, morphine is the drug of choice for treating otherwise refractory dyspnea in terminal illness.
Lorazepam and other benzodiazepines are also widely used, especially in terminally ill patients whose dyspnea has an anxiety component, although evidence to support this practice is lim-ited.26 In addition, steroids and oxygen therapy may be of benefit [see Table 3].
Cough
Cough can be an annoyance or can develop into a major source of suffering by causing muscle strain, increasing fatigue, and interrupting sleep. In one study of lung cancer patients, cough was the most common symptom, affecting 80% of patients until just before death.27 Because the causes of cough are varied, the optimal treatment is treatment of the underlying problem, if possible. When such treatment is not possible, management depends on whether the cough is productive [see Figure 1].28 A productive cough may improve with chest physiotherapy, oxygen, humidity, and suc-tioning. Antibiotics for infection, N-acetylcysteine, bronchodila-tors, and guaifenesin are also effective.29,30 Opioids, antihistamines, and anticholinergics decrease mucus production, which can decrease the stimulus for cough. Cough suppressants can be harmful if used in patients with productive coughs by causing mucus retention,29,30 which may lead to the formation of mucous plugs and airway obstruction. A patient with a nonproductive cough may benefit from a cough-suppressing agent such as a local anesthetic (e.g., nebulized bupivacaine), bronchodilators, opioids, or a soothing agent such as a lozenge. Benzonatate, steroids, and opiates are effective treatments. Opioids act centrally and are one of the most effective agents against cough. Nonopioid antitussives, such as dextromethorphan, may work synergistically with opiates.30
Gastrointestinal symptoms
Anorexia, nausea and vomiting, constipation, bowel obstruction, and diarrhea are common and potentially devastating in terminal illness.
Anorexia
Anorexia is nearly universal in patients with a terminal ill-ness.31 Evaluation of anorexia should be concentrated on finding a reversible or treatable cause.
For physical symptoms, patients are instructed to check off all symptoms experienced during the past week and the degree to which the symptom bothered or distressed them. Categories and scores are as follows: Not at all (0), A little bit (1), Somewhat (2), Quite a bit (3), and Very much (4). Patients may also add symptoms not listed and rate them on the same scale. For psychological symptoms, patients are instructed to check off all symptoms experienced during the past week and how often each occurred. Categories and scores are as follows: Rarely (1), Occasionally (2), Frequently (3), and Almost constantly (4). Patients may also add symptoms not listed and rate them on the same scale.
Table 2 Memorial Symptom Assessment Scale14
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Physical Symptom |
Severity |
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0 |
1 |
2 |
3 |
4 |
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Difficulty concentrating |
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Pain |
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Lack of energy |
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Cough |
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Changes in skin |
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Dry mouth |
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Nausea |
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Feeling drowsy |
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Numbness or tingling in hands and feet |
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Hair loss |
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Constipation |
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Swelling of arms or legs |
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Psychological Symptom |
Frequency |
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0 |
1 |
2 |
3 |
4 |
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Feeling sad |
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Worrying |
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Feeling irritable |
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Feeling nervous |
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It is important to note that cognitive impairment, which is also highly prevalent in advanced disease, may cause a person to be misdiagnosed as anorexic, because the person may be unable to obtain, prepare, or eat meals.32 Often in terminal disease, however, the patient simply loses the desire to eat.
Patients themselves may complain of anorexia, in some cases because they find the resulting cachexia unacceptable. In those cases, the decision to treat is straightforward. However, anorexia can often be of more concern to family, friends, and medical staff than to patients themselves. The family may be concerned because loss of appetite is seen as a certain sign of impending death.33 Concern about anorexia may also be rooted in the emotional and psychological meanings that surround food and its consumption: not feeding the patient may be considered equivalent to not caring about the patient. The family should be reassured that anorexia in terminal disease is usually not associated with suffering; especially at the end of life, patients rarely feel hunger or thirst, and many patients who stop eating experience analgesia and even euphoria. Excessive proteins and lipids can induce nausea and vomiting in such cases, and excessive hydra-tion can result in edema and dyspnea.34
In the early stages of terminal illness, however, studies have shown that the treatment of anorexia with appetite stimulants may improve patients’ quality of life.35,36 Treatment can begin with simple measures. The patient should be encouraged to eat without any restrictions on sugar, salt, or fats, when possible. Alcohol has appetite-stimulating properties, so patients may wish to consider a cocktail or glass of wine before the evening meal.37
Appetite stimulants with proven efficacy in palliative care include dexamethasone, in dosages of 2 to 20 mg/day (recommended because its long half-life permits once-daily dosing and because it has minimal mineralocorticoid effects); mege-strol acetate (beginning with 200 mg every 8 hours and titrating to 800 mg/day); and cannabinoids (e.g., tetrahydro-cannabinol [THC]), starting with a small dose and titrating to effect and tolerability. Dexamethasone and megestrol tend to be used more often than cannabinoids because of the restricted availability of cannabinoids.
Anorexia in patients with dementia Because Alzheimer disease destroys higher brain function while sparing the other major organ systems, many patients with Alzheimer disease progress to a stage at which they are unable to eat on their own or even chew and swallow reliably but may survive for years if artificial hydration and nutrition are provided. Deciding whether to insert a gastrostomy tube in such patients can be challenging. Complications of tube feeding are common and include repeated infections, whose treatment may require needle sticks, transfer to a hospital, and restraints; these are especially burdensome for a confused patient who cannot understand the reason for such in-terventions.38 In addition, patients with advanced neurologic impairment are at high risk for pneumonia from a variety of causes, including but not limited to aspiration. There is no evidence that tube feeding reduces the risk of pneumonia in such patients; it may even increase the risk.39 One may ask what is to be gained with artificial nutrition and hydration in such cases.
Because of the terminal and irreversible nature of end-stage dementia and the substantial burden that continued life-prolonging care may pose for these patients, they may be better served by palliative care that focuses predominantly on their comfort. Comfort care is viewed as preferable to life-prolonging measures by a substantial proportion of nursing home patients and family members.40 Families should be reassured that it is never unethical to withhold nutrition and hydration if they are not helping the patient.
Table 3 Drug Treatment for Dyspnea33
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Drug (Trade Name) |
Dosage |
Comment |
|
Oral morphine |
2.5-5 mg p.o., q. 4 hr while awake |
Doses for opiate-naive patients |
|
I.V. morphine |
0.5 mg/hr; titrate to relief |
Once dose requirement established, switch to long-acting oral opiate or fentanyl patch |
|
Nebulized morphine |
2.5-10 mg injectable in 2 ml NS |
— |
|
Nebulized hydromorphone |
0.25-1 mg injectable in 2 ml NS |
— |
|
Nebulized albuterol |
0.083% (3 ml) |
Possible adjunct to opioid |
|
Nebulized methylprednisolone (Solu-Medrol) |
10 mg |
Possible adjunct to opioid |
|
Dexamethasone |
Day 1: 16 mg p.o.; days 2-3: 8 mg b.i.d.; days 3-4: 4 mg b.i.d.; subsequent: 2 mg b.i.d. |
Possible adjunct to opioid |
|
Prednisone |
40 mg b.i.d. for 5-7 days |
Possible adjunct to opioid |
|
Lorazepam (Ativan) |
1-10 mg/day in two or three divided doses; usual dose, 2-6 mg/day in divided doses. Elderly: 0.5-4 mg/day |
For patients whose dyspnea has an anxiety component |
|
Oxygen |
2 L/min by nasal cannula; titrate to relief |
— |
NS—normal saline
