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. 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.[40] As 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.[41] [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 of skin ischemia and pain. [4] 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 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. To minimize the risk of 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, as 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 of skin breakdown becomes less important. Intermittent massage before and after turning, particularly to areas of contact, can both be comforting and reduce the risk of 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 normal 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 normal. Venous blood may pool along dependent skin surfaces. Urine output falls as perfusion of the kidneys diminishes. Oliguria or anuria is normal. 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 manifest themselves in 2 different patterns that have been described as the " 2 roads to death" [18] Most patients follow the "usual road" that presents as a decreasing level of consciousness that leads to coma and death. Decreasing Level of Consciousness The majority of patients traverse the "usual road to death." They 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. When moaning, groaning, and grimacing accompany the agitation and restlessness, these symptoms are frequently misinterpreted as physical pain.[21] However, it is a myth that uncontrollable pain suddenly develops during the last hours of life when it has not previously been a problem. Do not confuse pain with the restlessness, agitation, moaning, and groaning that accompany terminal delirium Families and professional caregivers 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. Loss of ability to swallow. Weakness and decreased neurologic function frequently combine to impair the patient's ability to swallow. The gag reflex and reflexive clearing of the oropharynx decline and secretions from the tracheobronchial tree accumulate. These conditions may become more prominent as the patient loses consciousness. Buildup of saliva and oropharyngeal secretions may lead to gurgling, crackling, or rattling sounds with each breath.[36] 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 of aspiration. If excessive fluid accumulates in the back of the throat and upper airways, it may need to be cleared by repositioning of the patient or postural drainage. Turning the patient onto one side or into a semiprone position may reduce gurgling. Lowering the head of the bed and raising the foot of the bed while the patient is in a semiprone position may cause fluids to move into the oropharynx, from which they can be easily removed. Do not maintain this position for more than a few minutes at a time, as stomach contents may also move unexpectedly. 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. When death is imminent, it is appropriate that patients remain with caregivers they know rather than be transferred to another facility. Institutions can help by making the environment as home-like as possible. It is appropriate for the physician, nurse practitioner, or physician assistant to order a private room where family can be present continuously and be undisturbed with the patient if they so choose. The clinician will want to talk with the professional staff and encourage continuity of care plans across nursing shifts and changes in house staff. Priorities and care plans at the end of life differ considerably from priorities and plans focusing on life prolongation and cure. It is frequently challenging for physicians, nurses, and other healthcare professionals to incorporate both kinds of care into a busy hospital or skilled nursing facility. For this reason, specialized units where patients and families can be assured of the environment and the skilled care they need have been developed in many institutions.[43,44] 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). Signs That Death Has Occurred The heart stops beating Breathing stops Pupils become fixed and dilated Body color becomes pale and waxen as blood settles Body temperature drops Muscles and sphincters relax (muscles stiffen 4-6 hours after death as rigor mortis sets in) Urine and stool may be released Eyes may remain open The jaw can fall open Observers may hear the trickling of fluids internally, even after death Professional members of the interdisciplinary team can also offer to assist family members in dealing with outstanding practical matters, such as helping to secure documents necessary to redeem insurance, find legal counsel to execute the will and close the estate, find resources to meet financial obligations, etc. Bereavement care for the family is a standard part of hospice care in the United States. Source: MEDSCAPE The EPEC™-O curriculum was initially produced by the EPEC Project™ at Northwestern University's Feinberg School of Medicine, with major funding provided by the National Cancer Institute and supplemental funding provided by the Lance Armstrong Foundation. Posted October 1, 2006 References for Caring During Last Hours of Life MEDSCAPE, 9/06 Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.