The Last Hours of Living: Practical Advice for Clinicians

Linda L. Emanuel, MD, PhD; Frank D. Ferris, MD; Charles F. von Gunten, MD, PhD; Joshua M. Hauser, MD; Jamie H. Von Roenn, MD

Disclosures

March 24, 2015

In This Article

Preparing for the Last Hours of Life

During the last hours of their lives, most patients require continuous and skilled care. This can be provided in any setting as long as the professional, family, and volunteer caregivers are appropriately prepared and supported throughout the process. The environment must allow family and friends access to their loved one around the clock and should be conducive to privacy and intimacy. Medications, equipment, and supplies need to be available in anticipation of problems, whether the patient is at home or in a healthcare institution. Because the patient's condition and the family's ability to cope can change frequently, both must be reassessed regularly and the plan of care modified as needed.

Changes in the patient's condition can occur suddenly and unexpectedly, so caregivers must be able to respond quickly. This is particularly important when the patient is at home, if unnecessary readmission to the hospital or other facility is to be avoided. Sometimes, admission to a higher intensity of care (such as a hospital palliative care unit) will be required for difficult-to-control symptoms, but for most patients, symptoms can be well-managed in the home setting, and these patients can remain at home during their final days.

If the last hours of a person's life are to be as positive as possible, advance preparation and education of professional, family, and volunteer caregivers are essential, whether the patient is at home, in an acute care or skilled nursing facility, in a hospice or palliative care unit, in prison, or in another setting. Everyone who participates must be aware of the patient's health status, his or her goals for care (and the parents' goals if the patient is a child), and advance directives (including who the healthcare proxy or durable power of attorney for healthcare is). They should also be knowledgeable about the potential time course and signs and symptoms of the dying process and their management.

A key role of all clinicians (physicians, nurses, social workers, and chaplains) is to help families understand that what they see may be very different from the patient's experience. If family members and caregivers feel confident, the experience can be a time of final gift-giving. For example, when parents feel confident about providing for the needs of their dying child, the sense that they are practicing good parenting skills is reinforced. If they are left unprepared and unsupported, they may spend excessive energy worrying about how to handle the next event. If events do not unfold as hoped or planned, family members may live with frustration, worry, fear, or guilt that they did something wrong or contributed to the patient's death.

Although we often sense that death will either come quickly over minutes or be protracted over days to weeks, it is not possible to predict with precision when death will occur. Some patients may appear to wait for someone to visit or for an important event such as a birthday or a special holiday and then die soon afterward. Others experience unexplained improvements and live longer than expected. A few seem to decide to die and do so very quickly, sometimes within minutes. Although it is possible to give families or professional caregivers a general idea of how long the patient might live, always advise them about the inherent unpredictability of the moment of death.

Physiologic Changes and Symptom Management

A variety of physiologic changes occur in the last hours and days of life that can be alarming if 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 pharmacologic management (Table 1).

Table 1. Changes During the Dying Process

Change Manifested by/Signs of:
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
Weight loss, muscle and fat, notable in temples
Decreasing fluid intake, dehydration Poor intake
Peripheral edema owing to hypoalbuminemia
Dehydration, dry mucous membranes/conjunctiva
Cardiac dysfunction, renal failure Tachycardia
Hypertension followed by hypotension
Peripheral cooling
Peripheral and central cyanosis (bluish color 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 Day-night reversal
Confusion
Agitation, restlessness
Purposeless, repetitious movements
Moaning, groaning
Respiratory dysfunction Change in respiratory 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, aspiration
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
Moaning
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

This feature requires the newest version of Flash. You can download it here.

Fatigue and weakness. Weakness and fatigue often increase as the patient approaches death. It is likely that the patient will not be able to move in the bed or raise his or her head.[3] Joints may become uncomfortable if they are not moved.[4] Continuous pressure on areas of skin, particularly over bony prominences, will increase the risk for skin ischemia and pain.[5] As the patient approaches death, providing adequate cushioning on the bed will lessen the need for uncomfortable turning.

Cutaneous ischemia. At the end of life, fatigue need not be resisted, and most treatments 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 1-2 hours. To minimize the risk for pressure ulcer formation, turn the patient from side to side every 1-1.5 hours and protect areas of bony prominence with hydrocolloid dressings and special supports. Avoid "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 because the risk for skin breakdown becomes less important. At this time, continued turning may cause some discomfort. It is important to assess and discuss this with the patient's family. 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 appetites.[6] 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.[7,8,9,10,11,12] 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 the 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 such problems as aspiration. Above all, help them to find alternative ways to nurture the patient (such as reminiscing, sitting quietly with him or her, holding hands, etc.) so that caregivers can continue to participate and feel valued during the dying process.

Decreasing fluid intake and dehydration. Most dying patients stop drinking.[13] Similar to the stopping of nutrition, 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.[14,15,16] Low blood pressure or a weak pulse is part of the dying process and not an indication of dehydration. Patients who are not able to be upright usually 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.[17] Depending on the situation, some patients may warrant a brief trial of parenteral fluids. This should generally be framed as a "time-limited trial" with agreed-upon endpoints such as a lower level of delirium or increased alertness.[18] If these endpoints are not met, it provides another opportunity to discuss goals of care again.

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 intravenous catheter 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 hypoalbuminemia is significant.

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.[19] Moisten and clean oral mucosa frequently with either baking soda mouthwash (one teaspoon salt, one teaspoon baking soda, one quart warm 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. 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 because these can be both desiccating and irritating, particularly on open sores. If eyelids are not closed, moisten conjunctiva with an ophthalmic lubricating gel or artificial tears every 3-4 hours.

Cardiac dysfunction and renal failure. As cardiac output and intravascular volume decrease at the end of life, peripheral perfusion will diminish, as evidenced by tachycardia, hypotension, peripheral cooling, cyanosis, and mottling of the skin (livedo reticularis). 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.[20]

Neurologic dysfunction. The neurologic changes associated with the dying process are the result of multiple concurrent irreversible factors. These changes may follow two different patterns that have been described as the "two roads to death" (Figure).[21] Most patients follow the "usual road" that presents as a declining level of consciousness that leads to coma and death.

Figure. Two roads to death.

Comments

3090D553-9492-4563-8681-AD288FA52ACE
Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.
Post as:

processing....