The Last Hours of Living



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The Last Hours of Living

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



Introduction to the Last Hours of Living

Clinical competence, willingness to educate, and calm and empathic reassurance are critical to helping patients and families during a loved one's last hours of living. Clinical issues that commonly arise in the last hours of living include the management of feeding and hydration, changes in consciousness, delirium, pain, breathlessness, and secretions. Management principles are the same whether the patient is at home or in a healthcare institution. However, death in an institution requires accommodations that may not be customary to assure privacy, cultural observances, and communication. In anticipation of the event, inform the family and other professionals about what to do and what to expect. Care does not end until the family has been supported with their grief reactions and those with complicated grief have been helped to get care.



Case Study: A.F. Is Dying at Home

A.F. is a 79-year-old woman with metastatic breast cancer who is in her own home, cared for by her daughter with the help of the home hospice program. She developed aspiration pneumonia, and was treated with oral antibiotics. Advance care planning indicates she does not want to go to the hospital under any circumstances, and oral antibiotics were an intermediate level of care. The patient and daughter agree that if she gets better, she may have some quality of time left. But if she doesn't, A.F. says she is ready to go. Her physician makes a joint home visit with the home hospice nurse in order to assess changes in mental status and because it sounds like her daughter panicked and considered calling 911.http://img.medscape.com/pi/global/ornaments/spacer.gif

Of all people who die, only a few (< 10%) die suddenly and unexpectedly. Most people (> 90%) die after a long period of illness, with gradual deterioration until an active dying phase at the end.[1] Care provided during those last hours and days can have profound effects, not just on the patient, but on all who participate. At the very end of life, there is no second chance to get it right.

Most clinicians have little or no formal training in managing the dying process or death. Many have neither watched someone die nor provided direct care during the last hours of life. Families usually have even less experience or knowledge about death and dying. Based on media dramatization and vivid imaginations, most people have developed an exaggerated sense of what dying and death are like. However, with appropriate management, it is possible to provide smooth passage and comfort for the patient and all those who watch.



Preparing for the Last Hours of Life

During the last hours of their lives, most patients require continuous 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 without disturbing others 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. As 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 is to be avoided.

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, a hospice or palliative care unit, prison, or other 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), advance directives, and proxy for decision making. They should also be knowledgeable about the potential time course, signs, and symptoms of the dying process, and their potential management.

Help families to 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, their 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 things do not go as hoped for, family members may live with frustration, worry, fear, or guilt that they did something wrong or caused the patient's death.

Establish in advance whether potential caregivers, including professionals who work in institutions, are skilled in caring for patients in the last hours of life. Do not assume that anyone, even a professional, knows how to perform basic tasks. Those who are inexperienced in this particular area will need specific training in areas such as body fluid precautions. Written materials can provide additional support to caregivers when experts are not present.

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, 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


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.[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.

http://img.medscape.com/article/716/463/716463-fig1.jpg

Figure. Two roads to death.

Two Roads to Death

Decreasing Level of Consciousness

Most 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.



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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. Given our inability to assess a dying patient's comprehension and the distress that talking "over" the patient may cause, 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. At times, it may seem that a patient may be waiting for permission to die. If this is the case, encourage family members to give the patient permission to "let go" and die in a manner that feels most comfortable. The physician, nurse, social worker, chaplain, or other caregivers might suggest to family members other words like:


  • "I know that you are dying; please do so when you are ready."

  • "I love you. I will miss you. I will never forget you. Please do what you need to do when you are ready."

  • "Mommy and Daddy love you. We will miss you, but we will be okay."

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.[19] To the family and professional caregivers 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," and they may worry that their own death will be the same. Bruera and associates[20] have documented the distressing impact of delirium on patients and families.

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.

If the patient is not assessed to be imminently dying, it may be appropriate to evaluate and try to reverse treatable contributing factors such as pain, urinary retention, or severe constipation/impaction. The treatment of reversible delirium is to find and correct reversible causes. The drug class of first choice for symptomatic management of reversible delirium is the neuroleptics.[21,22] On the other hand, irreversible delirium can also affect patients in the final hours of living. In this setting, it is referred to as irreversible terminal delirium.[23] Irreversible delirium does not respond to conventional treatment for reversible delirium. Focus on the management of the symptoms associated with terminal delirium in order to settle the patient and the family[24]

When moaning, groaning, and grimacing accompany the agitation and restlessness, these symptoms are frequently misinterpreted as physical pain.[25] However, it is a myth that uncontrollable pain suddenly develops during the last hours of life when it has not previously been a problem. Although a trial of opioids may be beneficial in the unconscious patient who is difficult to assess, clinicians must remember that opioids may accumulate and add to delirium when renal clearance is poor.[26,27]If the trial of opioids does not relieve the agitation or makes the delirium worse by increasing agitation or precipitating myoclonic jerks or seizures (rare), then pursue alternative therapies directed at suppressing the symptoms associated with delirium.

Currently, no studies specifically address the management of terminal delirium. Palliative experts base their treatment recommendations on the goals of treatment and the mechanisms of action of classes of medication. Benzodiazepines are generally not recommended for first-line management of delirium, especially if the delirium is thought to be reversible, because they can worsen delirium and cause paradoxic excitation.[28] However, because they are anxiolytics, amnestics, skeletal muscle relaxants, and antiepileptics,[27] benzodiazepines are recommended by palliative care experts for the management of irreversible terminal delirium, where the goal of therapy is sedation. Benzodiazepines are also the drug class of first choice for management of delirium complicated by seizures or caused by alcohol or sedative withdrawal.[29] Common starting doses are:


  • Lorazepam, 1-2 mg as an elixir, or a tablet predissolved in 0.5-1.0 mL of water and administered against the buccal mucosa every hour as needed until agitation subsides. Most patients will be controlled with 2-10 mg per 24 hour period. It can then be given in divided doses, every 3-4 hours, to keep the patient calm. For a few extremely agitated patients, high doses of lorazepam, 20-50+ mg/24 hours, may be required.

  • Midazolam 1-5 mg/hour subcutaneously or intravenously by continuous infusion, preceded by repeated loading boluses of 0.5 mg every 15 minutes to effect, may be a rapidly effective alternative.

Barbiturates or propofol have been suggested as alternatives for management of refractory agitation.[30,31] Seizures may be managed with high doses of benzodiazepines or alternatively with other antiepileptics such as intravenous phenytoin, subcutaneous fosphenytoin, or phenobarbital 60-120 mg rectally, intravenously, or intramuscularly every 10-20 minutes as needed until control is established.

If benzodiazepines cause paradoxical excitation, the patient may require neuroleptic medications to control delirium. Haloperidol has fewer sedating and hypotensive effects, but in bedbound patients in whom sedation is desirable, chlorpromazine is a better choice:



  • Chlorpromazine 10-25 mg orally or rectally every 60 minutes, or subcutaneously/intravenously every 30 minutes until agitation is controlled. Titrate to effect, then give the summed dose nightly to every 6 hours to maintain control.[32]

  • Haloperidol 0.5-2.0 mg intravenously every 10 minutes, subcutaneously every 30 minutes, or rectally every hour until agitation is controlled (titrate to effect, then give the summed dose nightly to every 6 hours to maintain control).[33]
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