The Last Hours of Living: Practical Advice for Clinicians: Physiologic Changes and Symptom Management

MedscapeCME - Linda Emanuel, MD, PhD; Frank D. Ferris, MD; Charles F. von Gunten, MD, PhD; Jamie H. von Roenn, MD

3. Physiologic Changes and Symptom Management

A variety of physiologic changes occur in the last hours and days of life, and when the patient is actually dying, which can be alarming if it is not understood. The most common issues are summarized here. To effectively manage each syndrome or symptom, physicians, nurses, and other caregivers need to have an understanding of its cause, underlying pathophysiology, and the appropriate pharmacology to use (Table 1).

Table 1. Changes During the Dying Process
ChangeManifest by/Signs
Fatigue, weaknessDecreasing function, hygiene
Inability to move around bed
Inability to lift head off pillow
Cutaneous ischemiaErythema over bony prominences
Skin breakdown, wounds
Decreasing appetite/
food intake, wasting
Poor intake
Aspiration, asphyxiation
Weight loss, muscle and fat, notable in temples
Decreasing fluid intake, dehydrationPoor intake
Peripheral edema due to hypoalbuminemia
Dehydration, dry mucous membranes/conjunctiva
Cardiac dysfunction, renal failureTachycardia
Hypertension followed by hypotension
Peripheral cooling
Peripheral and central cyanosis (bluing of extremities)
Mottling of the skin (livedo reticularis)
Venous pooling along dependent skin surfaces
Dark urine
Oliguria, anuria
Neurologic dysfunction, including:
Decreasing level of consciousnessIncreasing drowsiness
Difficulty awakening
Unresponsive to verbal or tactile stimuli
Decreasing ability to communicateDifficulty finding words
Monosyllabic words, short sentences
Delayed or inappropriate responses
Verbally unresponsive
Terminal deliriumEarly signs of cognitive failure (eg, day-night reversal)
Agitation, restlessness
Purposeless, repetitious movements
Moaning, groaning
Respiratory dysfunctionChange in ventilatory rate -- increasing first, then slowing
Decreasing tidal volume
Abnormal breathing patterns -- apnea, Cheyne-Stokes respirations, agonal breaths
Loss of ability to swallowDysphagia
Coughing, choking
Loss of gag reflex
Buildup of oral and tracheal secretions
Loss of sphincter controlIncontinence of urine or bowels
Maceration of skin
Perineal candidiasis
PainFacial grimacing
Tension in forehead, between eyebrows
Loss of ability to close eyesEyelids not closed
Whites of eyes showing (with or without pupils visible)
Rare, unexpected events:
Bursts of energy just before death occurs, the "golden glow"
Aspiration, asphyxiation

Fatigue and weakness. Weakness and fatigue usually increase as the patient approaches the time of death. It is likely that the patient will not be able to move around in the bed or raise his or her head.[2] Joints may become uncomfortable if they are not moved.[3] Continuous pressure on the same area of skin, particularly over bony prominences, will increase the risk for skin ischemia and pain.[4] As the patient approaches death, providing adequate cushioning on the bed will lessen the need for uncomfortable turning. At the end of life, fatigue need not be resisted and most treatment to alleviate it can be discontinued. Patients who are too fatigued to move and have joint position fatigue may require passive movement of their joints every 1 to 2 hours.

Cutaneous ischemia. To minimize the risk for pressure ulcer formation, turn the patient from side to side every 1 to 1.5 hours and protect areas of bony prominence with hydrocolloid dressings and special supports. Do not use "donut-shaped" pillows or cushions, because they paradoxically worsen areas of breakdown by compressing blood flow circumferentially around the compromised area.

A draw sheet can assist caregivers to turn the patient and minimize pain and shearing forces to the skin. If turning is painful, consider a pressure-reducing surface (eg, air mattress or airbed). As the patient approaches death, the need for turning lessens as the risk for skin breakdown becomes less important. Intermittent massage before and after turning, particularly to areas of contact, can both be comforting and reduce the risk for skin breakdown by improving circulation and shifting edema. Avoid massaging areas of nonblanching erythema or actual skin breakdown.

Decreasing appetite and food intake. Most dying patients lose their appetite.[5] Unfortunately, families and professional caregivers may interpret cessation of eating as "giving in" or "starving to death." Yet, studies demonstrate that parenteral or enteral feeding of patients near death neither improves symptom control nor lengthens life.[6-10] Anorexia may be helpful as the resulting ketosis can lead to a sense of well-being and diminish discomfort.

Clinicians can help families understand that loss of appetite is expected at this stage. Remind them that the patient is not hungry, that food either is not appealing or may be nauseating, that the patient would likely eat if he or she could, that the patient's body is unable to absorb and use nutrients, and that clenching of teeth may be the only way for the patient to express his/her desire not to eat.

Whatever the degree of acceptance of these facts, it is important for professionals to help families and caregivers realize that food pushed upon the unwilling patient may cause problems such as aspiration and increased tension. Above all, help them to find alternative ways to nurture the patient so that they can continue to participate and feel valued during the dying process.

Decreasing fluid intake and dehydration. Most dying patients stop drinking.[11] This may heighten onlookers' distress as they worry that the dehydrated patient will suffer, particularly if he or she becomes thirsty. Most experts feel that dehydration in the last hours of living does not cause distress and may stimulate endorphin release that promotes the patient's sense of well-being.[12-14] Low blood pressure or weak pulse is part of the dying process and not an indication of dehydration. Patients who are not able to be upright do not get light-headed or dizzy. Patients with peripheral edema or ascites have excess body water and salt and are not dehydrated.

Parenteral fluids, given either intravenously or subcutaneously using hypodermoclysis, are sometimes considered, particularly when the goal is to reverse delirium.[15] However, parenteral fluids may have adverse effects that are not commonly considered. Intravenous lines can be cumbersome and difficult to maintain. Changing the site of the angiocatheter can be painful, particularly when the patient is cachectic or has no discernible veins. Excess parenteral fluids can lead to fluid overload with consequent peripheral or pulmonary edema, worsened breathlessness, cough, and orotracheobronchial secretions, particularly if there is significant hypoalbuminemia.

Mucosal and conjunctival care. To maintain patient comfort and minimize the sense of thirst, even in the face of dehydration, maintain moisture on mucosal membrane surfaces with meticulous oral, nasal, and conjunctival hygiene.[16] Moisten and clean oral mucosa every 15 to 30 minutes with either baking soda mouthwash (1 teaspoon salt, 1 teaspoon baking soda, 1 quart tepid water) or an artificial saliva preparation to minimize the sense of thirst and avoid bad odors or tastes and painful cracking. Treat oral candidiasis with topical nystatin or systemic fluconazole if the patient is able to swallow. Coat the lips and anterior nasal mucosa hourly with a thin layer of petroleum jelly to reduce evaporation. If the patient is using oxygen, use an alternative nonpetroleum-based lubricant. Avoid perfumed lip balms and swabs containing lemon and glycerin, as these can be both desiccating and irritating, particularly on open sores. If eyelids are not closed, moisten conjunctiva with an ophthalmic lubricating gel every 3 to 4 hours or artificial tears or physiologic saline solution every 15 to 30 minutes to avoid painful dry eyes.

Cardiac dysfunction and renal failure. As cardiac output and intravascular volume decrease at the end of life, there will be evidence of diminished peripheral blood perfusion. Tachycardia, hypotension, peripheral cooling, peripheral and central cyanosis, and mottling of the skin (livedo reticularis) are expected. Venous blood may pool along dependent skin surfaces. Urine output falls as perfusion of the kidneys diminishes. Oliguria or anuria usually ensues. Parenteral fluids will not reverse this circulatory shut down.[17]

Neurologic dysfunction. The neurologic changes associated with the dying process are the result of multiple concurrent irreversible factors. These changes may follow 2 different patterns that have been described as the "2 roads to death" (Figure).[18] Most patients follow the "usual road" that presents as a decreasing level of consciousness that leads to coma and death.

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16. Lethen W. Mouth and skin problems. In: Saunders C, Sykes N. The Management of Terminal Malignant Disease, 3rd ed. Boston: Edward Arnold; 1993:139-142.
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18. Freemon FR. Delirium and organic psychosis. In: Organic Mental Disease. Jamaica, NY: SP Medical and Scientific Books; 1981:81-94.

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