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.
| CHANGES DURING THE DYING PROCESS | |
|---|---|
| Change | Manifest by/Signs |
| Fatigue, weakness | Decreasing function, hygiene Inability to move around bed Inability to lift head off pillow |
| Cutaneous ischemia | Erythema over bony prominences Skin breakdown, wounds |
| Decreasing appetite/ food intake, wasting | Anorexia Poor intake Aspiration, asphyxiation Weight loss, muscle and fat, notable in temples |
| Decreasing fluid intake, dehydration | Poor intake Aspiration Peripheral edema due to hypoalbuminemia Dehydration, dry mucous membranes/conjunctiva |
| Cardiac dysfunction, renal failure | Tachycardia 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 consciousness | Increasing drowsiness Difficulty awakening Unresponsive to verbal or tactile stimuli |
| Decreasing ability to communicate | Difficulty finding words Monosyllabic words, short sentences Delayed or inappropriate responses Verbally unresponsive |
| Terminal delirium | Early signs of cognitive failure (eg, day-night reversal) Agitation, restlessness Purposeless, repetitious movements Moaning, groaning |
| Respiratory dysfunction | Change in ventilatory rate -- increasing first, then slowing Decreasing tidal volume Abnormal breathing patterns -- apnea, Cheyne-Stokes respirations, agonal breaths |
| Loss of ability to swallow | Dysphagia Coughing, choking Loss of gag reflex Buildup of oral and tracheal secretions Gurgling |
| Loss of sphincter control | Incontinence of urine or bowels Maceration of skin Perineal candidiasis |
| Pain | Facial grimacing Tension in forehead, between eyebrows |
| Loss of ability to close eyes | Eyelids 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. Joints may become uncomfortable if they are not moved. Continuous pressure on the same area of skin, particularly over bony prominences, will increase the risk for skin ischemia and pain. 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. 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. 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. 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. 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. 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. 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.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 below). Most patients follow the "usual road" that presents as a decreasing level of consciousness that leads to coma and death.
Two Roads to Death: The Usual Trajectory
Decreasing Level of Consciousness
Most patients traverse the "usual road to death." Depending on the patient's illness, this trajectory may occur over hours or over many days. It is important to describe these changes and the probable, but unpredictable, time course to families. Dying patients experience increasing drowsiness, sleep most if not all of the time, and eventually become unarousable. Absence of eyelash reflexes on physical examination indicates a profound level of coma equivalent to full anesthesia.Communication with the unconscious patient
Families will frequently find the inability to communicate with their loved one distressing. The last hours of life are the time when they most want to communicate with their loved one. As many clinicians have observed, the degree of family distress seems to be inversely related to the extent to which advance planning and preparation occurred. The time spent preparing families is likely to be very worthwhile.Although we do not know what unconscious patients can actually hear, extrapolation from data from the operating room and "near death" experiences suggests that at times their awareness may be greater than their ability to respond. It is prudent to assume that the unconscious patient hears everything. Advise families and professional caregivers to talk to the patient as if he or she were conscious.
Encourage families to create an environment that is familiar and pleasant. Surround the patient with the people, children, pets, objects, music, and sounds that he or she would like. Include the patient in everyday conversations. Encourage family members to say the things they need to say. As touch can heighten communication, encourage family members to show affection in ways they are used to. Let them know that it is okay to lie beside the patient in privacy to maintain as much intimacy as they feel comfortable with.
Terminal delirium
An agitated delirium may be the first sign to herald the "difficult road to death." It frequently presents as confusion, restlessness, and/or agitation, with or without day-night reversal. To the family who do not understand it, agitated terminal delirium can be very distressing. Although previous care may have been excellent, if the delirium goes misdiagnosed or unmanaged, family members will likely remember a horrible death, "in terrible pain," and cognitively impaired "because of the drugs”. In anticipation of the possibility of terminal delirium, educate and support family and professional caregivers to understand its causes, the finality and irreversibility of the situation, and approaches to its management. It is particularly important that all onlookers understand that what the patient experiences may be very different from what they see.When moaning, groaning, and grimacing accompany the agitation and restlessness, these symptoms are frequently misinterpreted as physical pain. However, it is a myth that uncontrollable pain suddenly develops during the last hours of life when it has not previously been a problem. A trial of opioids may be beneficial in the unconscious patient who is difficult to assess. If the trial of opioids does not relieve agitation or makes the delirium worse or precipitates myoclonic jerks, pursue alternative therapies directed at suppressing the symptoms associated with delirium.
Respiratory dysfunction
Changes in a dying patient's breathing pattern may be indicative of significant neurologic compromise. Breaths may become very shallow and frequent with a diminishing tidal volume. Periods of apnea and/or Cheyne-Stokes pattern respirations may develop. (Cheyne-Stokes is a disorder characterized by recurrent central apneas during sleep, alternating with a crescendo-decrescendo pattern of tidal volume.) Accessory respiratory muscle use may also become prominent. A few (or many) last reflex breaths may signal death.Families frequently find changes in breathing patterns to be one of the most distressing signs of impending death. Many fear that the comatose patient will experience a sense of suffocation. Knowledge that the unresponsive patient may not be experiencing breathlessness or "suffocating," and may not benefit from oxygen (which may actually prolong the dying process) can be very comforting. Low doses of opioids and methotrimeprazine are appropriate to manage any perception of breathlessness. If the patient is already on opioids the dose can be increased.
Although it is true that patients are more likely to receive higher doses of both opioids and sedatives as they get closer to death, there is no evidence that initiation of treatment or increases in dose of opioids or sedatives is associated with precipitation of death. In fact, the evidence suggests the opposite.
Loss of ability to swallow
Weakness and decreased neurologic function frequently combine to impair the patient's ability to swallow. Buildup of saliva and oropharyngeal secretions may lead to gurgling, crackling, or rattling sounds with each breath. Some have called this the "death rattle" (a term that should be avoided, as it is frequently disconcerting to families and caregivers).Once the patient is unable to swallow, cease oral intake. Warn families and professional caregivers of the risk for aspiration. Muscarinic receptor blockers (anticholinergics) are commonly used agents to control respiratory secretions when death is imminent. Some evidence suggests that the earlier treatment is initiated, the better it works, as larger amounts of secretions in the upper aerodigestive tract are more difficult to eliminate.
If excessive fluid accumulates in the back of the throat and upper airways, it can be cleared by repositioning the patient or performing postural drainage. Oropharyngeal suctioning is not recommended. Suctioning is frequently ineffective, as fluids are beyond the reach of the catheter, and may only stimulate an otherwise peaceful patient and distress family members who are watching.
Loss of sphincter control
Fatigue and loss of sphincter control in the last hours of life may lead to incontinence of urine and/or stool. Both can be very distressing to patients and family members, particularly if they are not warned in advance that these problems may arise. If they occur, attention needs to be paid to cleaning and skin care. A urinary catheter may minimize the need for frequent changing and cleaning, prevent skin breakdown, and reduce the demand on caregivers. However, it is not always necessary if urine flow is minimal and can be managed with absorbent pads or surfaces. If diarrhea is considerable and relentless, a rectal tube may be similarly effective.Pain
Although many people fear that pain will suddenly increase as the patient dies, there is no evidence to suggest that this occurs. Although difficult to assess, continuous pain in the semiconscious or obtunded patient may be associated with grimacing and continuous facial tension, particularly across the forehead and between the eyebrows. The possibility of pain must also be considered when physiologic signs occur, such as transitory tachycardia that may signal distress. Do not confuse pain with the restlessness, agitation, moaning, and groaning that accompany terminal delirium. If the diagnosis is unclear, a trial of a higher dose of opioid may be necessary to judge whether pain is driving the observed behaviors.Loss of ability to close eyes
Eyes that remain open can be distressing to onlookers unless the condition is understood. Advanced wasting leads to loss of the retro-orbital fat pad, and the orbit falls posteriorly within the orbital socket. Because the eyelids are of insufficient length to both extend the additional distance backward and cover the conjunctiva, they may not be able to fully appose. This may leave some conjunctiva exposed even when the patient is sleeping. If conjunctiva remains exposed, maintain moisture by using ophthalmic lubricants, artificial tears, or physiologic saline.When Death Occurs
No matter how well families and professional caregivers are prepared, they may find the time of death to be challenging. Families, including children, and caregivers may have specific questions for health professionals.Basic information about death may be appropriate (eg, the heart stops beating; breathing stops; pupils become fixed; body color becomes pale and waxen as blood settles; body temperature drops; muscles and sphincters relax, and urine and stool may be released; eyes may remain open; the jaw can fall open; and observers may hear the trickling of fluids internally).
When an expected death occurs, the focus of care should shift from the patient to the family and those who provided care. Even though the loss has been anticipated for some time, no one will know what it feels like until it actually occurs, and indeed it may take hours to days to weeks or even months for each person to experience the full effect.
Many experts assert that the time spent with the body immediately after death will help people deal with acute grief. Those present, including caregivers, may need the clinician's permission to spend the time to come to terms with the event and say their good-byes. There is no need to rush, even in the hospital or other care facility. Encourage those who need to touch, hold, and even kiss the person's body as they feel most comfortable (while maintaining universal body fluid precautions).
Because a visually peaceful and accessible environment may facilitate the acute grieving process, a health professional, usually the nurse, should spend a few moments alone in the room positioning the patient's body, disconnecting any lines and machinery, removing catheters, and cleaning up any mess, to allow the family closer access to the patient's body.
Reference(s)
1). Linda L. Emanuel, MD, PhD; Frank D. Ferris, MD; Charles F. von Gunten, MD, PhD; Joshua M. Hauser, MD; Jamie H. Von Roenn, MD. The Last Hours of Living: Practical Advice for Clinicians. Section on 'Physiologic Changes and Symptom Management'. Article accessed March 24, 2015. Available here: https://www.medscape.com/viewarticle/716463_1
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