The death of someone close is never easy. No one can escape the experience of dying or death. Everyone at the dying person’s bedside will be watching the potential for his or her own future end-of-life experience and death. If symptoms are not well managed, there may be unnecessary suffering. If the dying process is prolonged unnecessarily, those who watch may be left with memories that the death was not good or fears that their own death will be similar.
Because much of end-of-life care and dying takes place in hospitals and long-term care facilities, most people have never witnessed death. Most people have never seen a dead body except in a funeral home. They have only seen media dramatizations on television or in the cinema. Based on their own experiences, many observers imagine what the patient must be feeling and suffering. They do not realize that the patient’s experience may be very different.
For the patient, along with the end of life come losses of functional capabilities, body image, sense of future, independence, control, and dignity. There are major transitions in roles, responsibilities, and family dynamics. Under stress, social support systems change. Some people remain loyal to the patient and family. Others abandon them out of fear or any number of other reasons.
As the patient’s physical capabilities diminish, he or she has an increased need for care, particularly as goals of care and treatment priorities start to shift frequently. Although individual family members may be willing to care for their loved one, they will benefit from considerable training and support from their physicians and other health care professionals.
Ultimately, when the patient dies, the original family group adjourns. Those who survive will form a new family group without the patient, except in their memory. Most families benefit from ongoing help from their physicians and other health care professionals to help them storm and norm all over again before can begin to perform effectively and establish equilibrium once again ( Figure 23-1 ).
Prepare the Patient and Family
Care during the last hours of life is a core competency of every physician and health care worker. People who know what to expect have a very different experience of dying and death than those who are ignorant of the process. Time spent preparing patients, family members, and caregivers for the end of life will reduce their anxiety and fear. Preparing family members and caregivers increases their competence and confidence to provide care; increases their sense of value and gifting during the process; creates good memories of the experience; prepares them for impending losses; shifts their roles, responsibilities, and support systems; and reduces their dependence on health care professionals (i.e., the frequency of visits and urgent phone calls).
Conduct a Family Meeting
To help people prepare, conduct one or more family meetings. These meetings can help to convey information, facilitate the development of an effective care team, facilitate life closure, help arrange for rites and rituals, and encourage planning for funeral or memorial services. When communicating with family, however, be sensitive to personal and cultural differences related to information sharing and decision making.
The process for conducting a family meeting is an application of the six steps of effective communication.
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Set the stage carefully. Ensure that everyone who wants to be present is present.
- 2
Ask “What is known about the patient’s illness and prognosis?”
- 3
Ask “How you would like to receive information?”
- 4
Once the family are clear that they would like to know, discuss the facts about the patient’s illness and prognosis—that is, that he or she is dying—and then stop talking.
- 5
Wait for emotional responses, and provide support.
- 6
Once emotions have settled, check for understanding, questions, and preparedness for more information. If emotions have been intense and participants don’t settle, it may be better to schedule a follow-up meeting.
If participants are prepared for further discussions, provide an overview of changes and events that are likely during the dying process ( Table 23-1 ). Inquire who the caregivers might be and ask about their caregiving skills and experience. Facilitate decision making regarding goals of care and treatment priorities. Develop a plan of care that includes personal activities that the patient may wish to complete before dying. Clarify who the surrogate decision maker will be once the patient loses capacity to make decisions. Review advance directives. Discuss the appropriateness and comfort of the family with the current setting of care, such as home, as the place for the patient’s end-of-life care and death. If family are not prepared for the patient to die at home, plan for a change in setting of care far enough in advance of the patient’s death to ensure that it is safe for the patient, family, and all caregivers. Try to minimize the risk of sudden changes in the setting of care simply because the patient is dying. Transfers from a nursing home to hospital or vice versa can be very disruptive and distressing to everyone.
| Change During the Dying Process | Manifested by/Signs |
|---|---|
| General Changes | |
| Fatigue, weakness |
|
| Cutaneous ischemia |
|
| Pain |
|
| Decreased food intake, wasting |
|
| Loss of ability to close eyes |
|
| Altered handling of fluids |
|
| Cardiac dysfunction |
|
| Renal failure |
|
| Neurologic Dysfunction | |
| Decreasing level of consciousness |
|
| Decreasing ability to communicate |
|
| Terminal hyperactive delirium |
|
| Respiratory dysfunction |
|
| Loss of ability to swallow |
|
| Loss of sphincter control, urinary retention |
|
| Other | |
| |
Develop an Effective Care Team
Most family members are not skilled at caring for someone who is dying. Frequently, those who volunteer to provide care need considerable training and support from the health care team.
As a care team forms, find out who would like to provide personal care versus help with other activities, such as cleaning, shopping, and scheduling of visitors. Give everyone permission to be family first and bedside caregivers only if they are prepared for the role. To help minimize guilt, offer everyone an appropriate task so they feel helpful. Establish who will coordinate the care team—that is, which clinician will lead the health care team and who will coordinate family, friends, and caregivers.
Once the care team has been selected, educate family and caregivers about changes to the patient’s condition that may occur during the dying process (see Table 23-1 ), including the unexpected; how to communicate during the dying process; signs that death has occurred ( Box 23-1 ); what to do when death occurs ( Box 23-2 ); and specific caregiving skills, such as changing a bed with a patient in it, turning, massage, passive movement of joints, management of urine and stool, mouth, nose, lip, and eye care, and how to deliver medications when the patient is unable to swallow. Ensure that everyone present knows how to practice universal body fluid precautions.
Ensure that the family, caregivers, and other health care providers are familiar with the signs of death and potential events that may occur as the patient dies:
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Heart stops beating
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Breathing stops
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Pupils become fixed and dilated
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Body becomes pale and waxen as blood settles
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Body temperature drops
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Muscles and sphincters relax (muscles stiffen 4–6 hours after death as rigor mortis sets in)
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Urine and stool may be released
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Eyes generally remain open
- •
Jaw can fall open
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Observers may hear trickling of fluids internally, even after death
Always be sensitive to and respectful of personal, cultural, and religious values, beliefs, and practices.
Ensure that family, caregivers, and health care providers know what to do when death occurs:
- •
There are no rules or regulations governing what happens after the patient dies.
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There is no need to call 911.
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There is no need to rush to call a physician or other health care provider. Invite the family and caregivers to call whenever they want support.
Encourage everyone to take time as needed after the death:
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Loved ones and caregivers should spend the time they need to witness and realize what has happened and say their goodbyes.
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They may touch, hold, and even kiss the person’s body, as they feel most comfortable.
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They may complete the desired rites and rituals at the appropriate time.
Sufficient time spent at the bedside beginning to “realize” that their loved one has died will benefit everyone as they start to adapt to the changes in their lives.
When family members are ready for or need support, make sure they know who to call (i.e., the physician, the hospice, etc.).
Because having many visitors can be fatiguing for the patient and the family, have a care team member take on the task of scheduling visits so that everyone gets an appropriate length of time with the patient.
Use a logbook to facilitate communication between caregivers and minimize repetitious questioning of patients and families about the following ongoing issues:
- 1
Goals of care
- 2
Active treatments
- 3
Patient preferences, such as food, conversation, and turning
- 4
Summaries of conversations, care provided, and fluid and nutritional intake
- 5
Contact information for all professional and informal caregivers
- 6
What to do in an emergency
- 7
What to do and who to call when death occurs
Discuss Communicating with the Dying Patient
During the last hours of life, families frequently want “just a little more time” to communicate with their loved one and become very distressed when they are not able to. The degree of distress seems inversely related to the extent to which advance planning and preparation occurred.
Although we do not know what unconscious patients can hear, experience suggests that their awareness may be greater than their ability to respond. Presume that the unconscious patient hears everything . Advise families and caregivers to talk to the patient as if he or she is conscious. Surround the patient with the people, pets, things, music, and sounds that he or she would like. Encourage family to say the things they need to say. Share “bad” news away from the bedside, in another room, behind closed doors. Encourage family to give the patient permission to “let go and die” using words that are comfortable to them. Suggest phrases such as, “I know that you are dying, please do so when you are ready” and “I love you. I will miss you. I will never forget you. Please do what you need to do when you are ready.”
Encourage everyone to show affection in ways they are used to, including touching and lying beside the patient. Encourage as much intimacy as family feel comfortable with. Maintain the privacy of the family as they are with the patient.
Facilitate Life Closure
If they have the opportunity, many patients approaching the end of their lives want to finish their business, organize their financial and legal affairs, and reconcile both close and estranged relationships. Help them engage in activities to create memories, including reminiscence and life review through stories and photos, family reunions and celebrations, letter writing, and the creation of audiotapes or videotapes. Patients can engage in gift giving of thoughts, personal treasures, family heirlooms, or money. They can also discuss the possibility of organ donation such as corneas, or say a last “hurrah” and goodbye. Some patients even want to have a celebration before their death to give gifts and say goodbye to close family and friends.
Rites and Rituals, Funerals, and Memorial Services
Ensure that everyone is aware of personal, cultural, and religious traditions, rites, and rituals that may dictate how prayers are to be conducted, how a person’s body is to be handled after death, whether health care professionals can touch it, and when and how the body can be moved.
Help the patient and family plan funeral or memorial services, burial, or cremation.
Provide Ongoing Support
Throughout the last hours of life of the patient, the family will benefit from repeated contact with their physicians and health care team. Review the status of the patient with family and caregivers regularly. Repeat and clarify the goals of care, the futility of life-prolonging therapies (especially artificial hydration and nutrition), and the irreversibility of unfolding events. Modify the plan of care as needed to address the changing situation and goals of care. Assess the potential for an intense, acute grief reaction and who is at high risk for a complicated grief reaction.
Because delays in communication only heighten anxiety, ensure that knowledgeable clinicians, including a physician, are available by telephone 24 hours per day, 7 days per week. Families and caregivers will have the best outcome if their questions and concerns are addressed promptly, so they don’t feel compelled to call 911 or visit the emergency room.
Dying in Institutions
Because many patients die in hospitals, nursing homes, and prisons and jails, a few remarks are warranted regarding the particular challenges of ensuring a comfortable death in institutions where the culture is not focused on end-of-life care. Tradeoffs previously acceptable because the patient would get better, such as the loss of privacy and no opportunity for intimacy, are no longer acceptable because this is the last chance for the patient and family to be together.
Provide privacy so that confidential conversations are possible and family can be present continuously (or move other patients out of a multibed room). Encourage the family to surround the patient with a few of his or her favorite personal belongings and photos.
Because this is the last chance for family members to be close, encourage intimacy. Teach them how to pillow side rails and curl up safely in a hospital bed beside their loved one. Provide privacy signs to hang on closed doors that staff will respect.
Ensure that the staff is knowledge and skilled in last-hours-of-life care and collaborates to provide a single plan of care across nursing shifts and changes in house staff. If the provision of environments conducive to end-of-life care proves to be difficult on the general medical/surgical units, establish or move the patient to a specialized palliative care unit where patients and families can be assured of the environment and the skilled care they need.
Manage the Dying Process
The many common, irreversible signs and symptoms that develop during the last hours of life can be alarming if not understood (see Box 23-1 ). Reassess the need for every therapeutic intervention. Stop all therapies that are inconsistent with the patient’s goals of care. Continue only medications needed to manage symptoms such as pain, breathlessness, and terminal hyperactive delirium or to reduce secretions and prevent seizures ( Table 23-2 ).
| Drug | Dosing | Notes |
|---|---|---|
| Lorazepam | 1–2 mg buccal mucosal/ PR/SL/SC/IV, q1h to titrate, then q4–6h to maintain | If paradoxical agitation observed, choose a nonbenzodiazepine for sedation. |
| Haloperidol | 2–5 mg PR/SC/IV q1h to titrate then q6h to maintain | Relatively nonsedating at low doses. May require 10–30 mg daily to sedate. |
| Chlorpromazine | 10–25 mg PR/SC/IV q4–6h | Parenteral route may require special exemptions from standard nursing policy in some settings. |
| Scopolamine (hyoscine hydrobromide) | 10–100 µg/hr SC/IV continuous infusion; or 0.1–0.4 mg SC q6h; or 1–10 patches q72h | Transdermal preparation only: delivers approximately 10 µg/hr and takes 12–24 hours to reach therapeutic levels. |
| Glycopyrrolate | 0.2–0.4 mg SC q2–4h and titrate | Does not cross blood–brain barrier. |
Base pharmacologic and nonpharmacologic management on the etiology and underlying pathophysiology of each symptom. Always use the least invasive route of administration, usually the oral or buccal mucosa routes; occasionally the subcutaneous or intravenous routes; never the intramuscular route.
Weakness and Fatigue
As patients approach death, fatigue and weakness usually increase. Eventually, most will not be able to move around the bed or raise their head. Discontinue therapy to alleviate fatigue. Because joint position fatigue and significant achiness can develop if a patient remains in the same position without moving for prolonged periods, move joints passively every 1 to 2 hours to minimize any sense of achiness.
Skin Care
During the last hours of life, skin care focuses on hygiene, moisture, protection, pressure reduction, and massage. Bathe the patient routinely to maintain body hygiene, remove dead skin, clean up body fluids like urine and stool, and minimize body odor. Use warm water and a gentle skin-cleansing agent. Dry thoroughly to minimize the risk of maceration. Avoid soaps that are drying or abrasive and perfumes that may be irritating.
Moisturize the skin routinely to minimize the risk of dry, flaking skin and pruritus, maintain elasticity, and minimize the risk of tears. Avoid rubbing areas that are erythematous or have broken down.
Protect thin, fragile skin to minimize the risk of skin tears. This is particularly important in cachectic patients who have lost skin elasticity and resilience. Thin, transparent membranes reduce shearing forces. Hydrocolloid dressings add a cushioning effect.
Continuous pressure, particularly over bony prominences, increases the risk of ischemia, skin breakdown, and pain. To minimize sacral pressure, keep the head of the bed to elevations less than 30 degrees. Raise it only for short periods of social interaction. Avoid resting one limb on another. Use a pillow or another cushioning support to keep legs apart. Protect bony prominences with hydrocolloid dressings.
Turning helps to maintain comfort, reduce pressure, and minimize the risk of ischemia, skin breakdown, and joint position fatigue. When patients are unable to move themselves, turn the patient from side to side every 1 to 1.5 hours. Use a careful “log-roll” technique with a draw sheet to distribute forces evenly across the patient’s body and minimize pain on movement and to reduce shearing forces that could lead to skin tears. If turning is painful, turn the patient less frequently or place the patient on a pressure-reducing surface, such as an air mattress or air bed. As patients approach death, the need for turning lessens as the risk of skin breakdown becomes less important.
Massage intermittently to stimulate circulation, shift edema, spread out moisturizing lotions, and provide comfort. This is particularly helpful in dependent areas subject to increased pressure, before and after turning. Avoid massaging skin that is erythematous or has broken down.
Wound Care
During the last hours of life, wound care focuses exclusively on comfort, not healing. Minimize the frequency of dressing changes. Use nonstick pain-reducing dressings, such as hydrogels, alginates, and soft silicones. Control infections with topical antibacterials such as iodine, metronidazole, or silver sulfadiazine, and antifungals such as ketoconazole. Contain exudate flow with foam dressings. Absorb odors with kitty litter or activated charcoal placed in a pan under the bed or a candle burning in the room. Consider masking odors with alternate smells like vanilla or vinegar. Avoid scented deodorizers or perfumes.
Decreased Nutritional Intake and Wasting
Most patients lose their appetite and reduce food intake long before they reach the last hours of life. Families and professional caregivers may often interpret cessation of eating as “giving in” and worry that the patient will starve to death. In fact, most dying patients are not hungry; food is not appealing and may even be nauseating. Parenteral or enteral feeding at the end of life does not improve symptom control and it does not lengthen life.
Clinicians can help reframe families’ understanding of anorexia from “starving to death” to “metabolic abnormalities due to cancer that may be protective.” Intellectual function remains intact for longer. Ketosis can also increase the patient’s general sense of well-being.
Clinicians can help families and caregivers realize that food pushed on an unwilling patient or one who is incapable of eating inadvertently may cause nausea, aspiration, or asphyxiation and increase tensions and bad feelings. Clenched teeth may be the only way for the patient to exert control and should be respected. As an alternative, help family members and caregivers find different ways to provide appropriate physical care and emotional support to the patient.
Loss of Ability to Close Eyes
During the last hours of life, patients frequently leave their “eyes open,” though their irises and pupils are not visible. This is not a sign of neurologic dysfunction. Advanced wasting leads to loss of the retro-orbital fat pad. Muscles pull the orbit back into its socket. The patient’s eyelids are not long enough to extend the additional distance backward and fully cover the conjunctiva. As a result, the eyelids no longer appose and some conjunctiva remains exposed, even when the patient is sleeping. Educate the family and caregivers about the cause so they will understand what is happening and not find it distressing. When conjunctiva is exposed, maintain moisture using ophthalmic lubricants, artificial tears, or physiologic saline (see Oral, Nasal, and Conjunctival Care section).
Decreased Fluid Intake and Dehydration
Most patients reduce their fluid intake or stop drinking before they die. This frequently causes distress to family and caregivers, who worry that the patient will become dehydrated, thirsty, and suffer. Clinicians can help families and caregivers understand that this is an expected event and suggest alternate ways for them to give care.
When Fluid Intake Is Reduced
If the patient is still taking some fluid but not eating, salt-containing fluids, such as soups, soda water, sport drinks, and red vegetable juices, can facilitate rehydration, maintain electrolyte balance, and minimize the risk of nausea from hyponatremia. Fluids such as water, fruit juices, sodas, and soft drinks that are effectively “free water” and do not contain sodium bicarbonate are not rehydrating. Fluids that contain caffeine, like coffee, tea, and colas, are diuretics and worsen dehydration, as can alcohol. Discontinue all diuretics and antihypertensives.
As patients develop cachexia and hypoalbuminemia, their oncotic pressure and intravascular volume decrease, and mild peripheral edema is expected. The absence of mild peripheral edema signals severe dehydration. Increased fluid intake increases the risk of peripheral and pulmonary edema. It does not replenish the intravascular volume.
An albumin infusion can restore temporarily intravascular oncotic pressure, produce a transitory diuresis, and reduce edema for a short period (hours to 1 or 2 days). Especially when combined with a loop diuretic, this may allow the patient to participate in a specific activity, such as a family reunion. Routine albumin infusions are not recommended in cachectic patients. The albumin is catabolized within hours as a nutritional source for the patient (or tumor), and it does not reverse the underlying protein deficit. It is also an expensive procedure.
When the Patient Stops Taking Fluids
When a patient stops taking oral fluids, explain to the family that patients with peripheral edema or ascites have excess body water and salt and are not dehydrated. They will not get lightheaded or dizzy if they are not elevated in bed. Low blood pressure and a weak pulse are part of the dying process, not just an indication of dehydration. Most experts believe that dehydration in the last hours of life does not cause distress. It may stimulate endorphin release and add to the patient’s sense of well-being.
The most frequent symptoms that dehydrated patients complain of are thirst, dry mouth, and fatigue. At the end of life these symptoms are most likely to be caused by disease progression, mouth breathing, analgesics, anxiolytics, and anticholinergics used to control secretions. Several studies have shown that parenteral fluids do not affect the sensation of thirst and dry mouth that patients experience at the end of life. The best treatment for these symptoms is frequent and good oral care, ice chips, swabs with water, and nystatin if thrush is present. Parenteral fluids may help to reduce sedation and myoclonus, either from hydration or increased elimination of active opioid metabolites. However, parenteral fluids have not been shown to lengthen life, and may even shorten life. They can worsen peripheral edema and ascites and increase gastrointestinal and respiratory secretions, which may result in breathlessness, pain, nausea and vomiting, and increased urination that requires catheter placement.
Oral, Nasal, and Conjunctival Care
During the last hours of life, meticulous oral, nasal, and conjunctival hygiene are essential to maintain comfort.
To minimize bad odors and tastes and the sense of thirst and reduce the risk of painful cracking and bleeding, moisten and clean oral mucosa every 15 to 30 minutes with either a baking soda mouthwash (5 mL salt plus 5 mL baking soda mixed in 1 L tepid water) or an artificial saliva preparation. If oral candidiasis is present and the patient is still able to swallow, treat with systemic fluconazole. Otherwise, dab white plaques with topical nystatin. Avoid swabs containing lemon and glycerin because glycerin is desiccating and lemon irritating, particularly on open sores.
To reduce evaporation, drying, and painful cracking of lips and nares, coat lips and anterior nasal mucosa with a thin layer of petroleum or other nonaqueous jelly every 4 hours. Be careful not to occlude nasal cannulae. Although not flammable, petroleum jelly could soften some plastics if exposure is prolonged. Avoid perfumed lip balms because these can be irritating.
To minimize the risk of painful dry eyes, particularly when eyes remain open, moisten conjunctiva with an ophthalmic lubricating gel every 3 to 4 hours or artificial tears or physiologic saline solution every 15 to 30 minutes (though these drain through tear ducts and evaporate quickly).
Cardiac Dysfunction and Renal Failure
Cardiac output, intravascular volume, and urinary output normally decrease toward the end of life. As oliguria develops, the remaining urine typically becomes very dark and “tea” colored. Ultimately, most dying patients become anuric. Rehydration with parenteral fluids is unlikely to reverse this circulatory shutdown or renal failure, particularly when the patient is hypoalbuminemic.
Neurologic Dysfunction: the two Roads to Death
Neurologic changes typically manifest as one of two patterns that have been described as the two roads to death ( Figure 23-2 ). Approximately 70% to 90% of patients follow the “usual road” and die quietly, likely a hypoactive delirium. Another 10% to 30% or more of patients follow the “difficult road” and experience a terminal hyperactive delirium.
