Debra E. Heidrich
“How people die remains in the memories of those who live on.”
Dame Cicely Saunders
As diseases progress and death nears, the focus, goals, and rhythm of care change. A decline in physical functioning is often the first indication that a patient is entering the terminal phase of life (Gauthier, 2005). Functional decline usually occurs 4 to 5 months before death in persons with malignant diseases and approximately 3 to 4 months before death in persons with organ failure. Frail persons in long-term care settings tend to have a slow decline in function over the last 12 months of life (Lunney, Lynn, Foley et al., 2003). As physical function declines, the number of medical disciplines directly providing care to the patient often decreases as the individual becomes too weak for an office or clinic visit. And, the number of informal caregivers (i.e., family and friends) increases as the patient becomes increasingly dependent on others for care. The physical and emotional demands of caring for a loved one at end-of-life can be overwhelming. It is during this time that patients and family members need the expertise and support of a palliative or hospice care program.
At the time patients and families need consistency, follow-through, and a feeling of connection, they may—and rightly so—feel increasingly distant from the relationships with their health care providers. It is during this time that the advanced practice nurse (APN) can provide valuable continuity by facilitating home care resources and by providing consultation and support via telephone contact and/or home care visitations.
The terminal phase is not simply a continuation of the previous care (Furst & Doyle, 2003). Symptoms often change at end-of-life. Disease-specific symptoms may intensify (e.g., dyspnea in pulmonary malignancy), others subside, and new symptoms may appear. The prevalence of symptoms at end-of-life as reported in the literature varies with the study setting, patient population, data collection tool, and timing of data collection in relation to patients’ deaths (Table 3-1).
| —, Not reported in the study | ||||||||||||||
| Symptoms (%) | ||||||||||||||
| Author | Setting/Population | No. of Subjects | Anxiety or Worry | Anorexia | Constipation | Concentration Difficulties | Confusion/Delirium | Depression/Feeling Sad | Drowsy | Mouth Dry | Dyspnea | Fatigue/Lack of Energy | Nausea and Vomiting | Pain |
| Klinkenberg, Willems, van der Wal, et al., 2004 | After-death survey of relatives of older adults | 270 | 31 | — | — | — | 36 | 28 | — | — | 50 | 83 | 25 | 48 |
| Kutner, Kassner, & Nowels, 2001 | Hospice staff from 16 hospices rating of patient symptoms | 348 | 43 | 63 | 39 | 60 | — | 51 | 61 | 34 | 48 | 83 | 24 | 76 |
| Tranmer, Heyland, Dudgear, et al., 2003 | Interviews of hospitalized patients near end-of-life | 135 | 70 | 52 | 39 | 44 | — | 53 | 70 | 81 | 62 | 84 | 44 | 63 |
| Nausea | ||||||||||||||
| 25 | ||||||||||||||
| Vomiting | ||||||||||||||
| Hickman, Tilden, & Tolle, 2001 | Family members of persons who died in a hospital | 103 | 26 | 53 | 30 | — | — | 43 | 59 | 60 | 65 | 67 | — | 59 |
| Hall, Schroder, & Weaver, 2002 | Chart audit noting symptoms in last 48 hours of life in long-term care settings | 185 | — | — | — | — | 29 | — | — | — | 62 | — | — | 44 |
Mercadante, Casuccio, and Fulfaro (2000) evaluated 370 home-based patients with advanced cancer and showed that the peak of opioid consumption, symptom frequency, and symptom severity correlated with poor functional status. Symptoms of nausea, vomiting, dry mouth, gastric pyrosis (heartburn), and diarrhea decreased as performance status declined, whereas dyspnea, drowsiness, weakness, and confusion tended to increase and to peak at the lowest levels of functional status.
In another study, Klinkenberg, Willems, van der Wal et al. (2004) identify seven symptoms most often reported in the literature at end-of-life: fatigue, pain, dyspnea, depression, anxiety, confusion, and nausea and/or vomiting. Family caregivers were queried to identify the presence of these symptoms during the last week of their loved ones’ lives and to rate the frequency, severity, and burden associated with each symptom experienced by their loved ones. Seventy-five percent of patients had two or more of these symptoms in the final week of life (range = 0 to 7; mean, 2.7). All seven symptoms were perceived by caregivers as burdensome to patients, with fatigue being the most burdensome, followed by pain, anxiety, dyspnea, depression, nausea/vomiting, and confusion. While studies of this nature are often difficult to generalize across settings and populations, it is clear that patients at end-of-life are at risk and experience multiple symptoms that create significant burdens and interfere with quality of life.
Although psychosocial symptoms are common in the dying patient, they are often not adequately evaluated or managed (Georges, Onwuteaka-Philipsen, van der Heide et al., 2005). Depression and anxiety (or anxiety-related symptoms such as nervousness, worry, or irritability) are included in most studies of symptom prevalence. The issues of loss, grief, isolation, sexual dysfunction, disturbed self-concept, spiritual distress, loneliness, and concerns about caregiver burden are less often assessed, yet these issues are no less important than physical symptoms. Georges et al. (2005) noted that a peaceful death is impeded by feelings of anxiety and loneliness.
Seriously ill patients queried about the importance of selected attributes to quality end-of-life care identified the following as the five most important concepts (Steinhauser, Christakis, Clipp et al., 2000):
▪ Freedom from pain
▪ Being at peace with God
▪ Presence of family
▪ Being cognitively aware
▪ Having treatment choices honored
Providing multidimensional care is essential at the end of life—including optimal physical care (e.g., pain relief), spiritual care, psychosocial care, and ongoing communication regarding advance care planning. Patients and families who were asked to identify the most important aspects of a physician’s skills when providing end-of-life care identified emotional support more often than medical competence (Wenrich, Curtis, Ambrozy et al., 2003).
Careful evaluation of all symptoms is necessary throughout the course of a patient’s care, including the last days and hours of life. Ideally, interventions are aimed at addressing and relieving the underlying cause rather than treating the outward symptom. For example, restlessness related to the discomfort from urinary retention is best relieved with catheterization rather than the introduction of a benzodiazepine. The underlying cause is not always readily identifiable or treatable; in these circumstances, interventions are directed to lessen the uncomfortable symptom.
The APN is in an ideal position to anticipate, evaluate, and monitor for physical and psychosocial symptoms. Providing the patient and family with the appropriate education about what to expect based on the disease process can reduce the anxiety and fear that often accompany “not knowing.” For example, dyspnea, respiratory secretions, cough, and pain are expected symptoms in the patient with metastatic lung cancer. Teaching the patient and family what to expect and how to address these symptoms when they do occur makes it less likely that these events will be perceived as “crises.”
It is important to realize that each situation is unique and that the patient and family often ascribe meaning to their experiences based on their own perspectives. For each patient and family, psychological, spiritual, cultural, and family issues converge and contribute to the end-of-life experience, no two of which are alike.
With few exceptions, the health care team has only one chance to “get it right” when caring for patients and families at end-of-life (Berry & Griffie, 2005). Excellent palliative care received in the months prior to death is not remembered if physical and psychosocial symptoms are not optimally addressed in the dying process (Furst & Doyle, 2003). This point was emphasized by Dame Cicely Saunders when she stated, “How people die remains in the memories of those who live on.”
CARE AT END-OF-LIFE
Patients nearing death are often weak, fragile, and less tolerant of physical and psychosocial stress. It is during this time that palliative interventions intensify and the focus on restorative care decreases. The goals of care are to prevent and appropriately manage symptoms and to support quality of living throughout the dying process.
Medications
During the dying process, the APN should evaluate all medications that the patient is taking and consider discontinuing medications that are not required to promote comfort (Ellershaw & Ward, 2005). The clinician must discuss with the patient and family why specific medications are no longer necessary. Without an appropriate explanation, the discontinuation of medications may appear to the patient or family as a death-hastening intervention. Medications such as antihypertensives, antidepressants, laxatives, antiulcer drugs, anticoagulants, long-term antibiotics, iron preparations, and vitamin supplements that are no longer essential may be discontinued. Medications such as steroids, replacement hormones, hypoglycemics, diuretics, antiarrhythmics, and anticonvulsants should be evaluated for efficacy and usefulness in the management of the disease and symptoms; those that are no longer beneficial for patient comfort may be discontinued (Furst & Doyle, 2003). It is important for the APN to understand how to successfully taper certain medications (e.g., antidepressants, steroids, hormones, benzodiazepines, and anticonvulsants) to avoid the discomforts associated with abrupt withdrawal.
Some patients are able to swallow until a few hours before they die, whereas others are unable to swallow for weeks or days before death occurs. Alternate routes of administering medications, including sublingual, buccal, rectal, subcutaneous, and intravenous, may be considered. Some individuals consider certain routes objectionable (e.g., rectal, subcutaneous). Discussing these various routes with the patient and family and assessing their willingness and ability to use these routes are important considerations when planning care.
Dehydration
Patients should be encouraged to maintain oral fluid intake for as long as possible. As death approaches, however, patients are often unable to take in adequate fluid by mouth. There is considerable debate regarding the use of nonoral hydration at the end of life and no consensus on the single best approach to care (Fainsinger, 2005). It is essential for the APN to assess the potential risks and benefits of artificial hydration while aiming to maintain comfort, prevent complications, and avoid unnecessary or distressing procedures (see Chapter 23). Key considerations when determining the role of nonoral hydration include the following (Fainsinger, 2005):
▪ Expressed wishes of the patient or surrogate decision-maker regarding the use of hydration
▪ Patient-defined goals that can be influenced by hydration
▪ Symptom burden that may be improved by withholding hydration (e.g., fluid overload) or providing hydration (e.g., delirium)
▪ Burden to patient and caregivers of maintaining nonoral hydration
▪ Family distress concerning withholding hydration/nutrition
When in doubt, a time-limited trial of nonoral hydration while vigilantly monitoring for improvement or uncomfortable effects is appropriate.
A dry mouth is not necessarily an indicator that the patient needs rehydration (Furst & Doyle, 2003). Patients should be encouraged to keep the mouth moist by sipping cold water, allowing ice chips to melt in the mouth, or eating sorbet (lemon flavoring is refreshing and stimulates saliva). As an alternative, water or normal saline (1 teaspoon of salt in a quart of water) can be sprayed into the mouth using a sprayer bottle or an atomizer. Artificial saliva preparations are available in liquids, sprays, and gels and can be applied to the oral mucosa. Water-soluble lubricants, such as KY Jelly or Surgilube, can be used to keep lips and gums moist. Careful evaluation of the oral mucosa is necessary to assess for lesions or signs of infection.
Signs and Symptoms of the Imminent Dying Process
With few exceptions, there are predictable signs and symptoms that signal that death is nearing. The clinician can use these symptoms as a guide to help the patient and family plan for the death and to clarify with family members their desires and needs at the time of death.
Asthenia
As weakness increases, the patient may progress from a bed-to-chair activity level to being completely bed-bound. Joints may become stiff and add to discomfort (Ferris, von Gunten, & Emanuel, 2003; Moneymaker, 2005). Unless movement makes the patient more uncomfortable or agitated, caregivers should be taught gentle passive range-of-motion exercises and interventions to prevent skin breakdown, such as turning schedules and the use of air mattresses (see Chapter 28).
Pain
In the dying process, a new pain may develop and chronic pain may increase in intensity, decrease in intensity, or remain the same (Pitorak, 2003). As renal function declines, some medications will remain in circulation longer or their active metabolites (e.g., morphine-3-glucuronide and morphine-6-glucuronide) may accumulate. The need to adjust analgesic doses or schedules should be evaluated throughout the dying process (see Chapter 32). Not all patients have pain, and some with mild pain may not need or desire significant intervention.
Changes in Mentation
In the days to weeks before the patient dies, he or she may doze frequently, even in the middle of conversations, and total sleeping time increases (Moneymaker, 2005). The patient may progress from being sleepy to lethargic to obtunded to semicomatose to comatose (Ferris et al., 2003). It is important to not “test” for the level of consciousness with an uncomfortable stimulus, such as a sternal rub; document the level of arousal when the patient’s name is called or with a gentle shaking of the shoulder. Not all patients proceed through this progressive decline in their level of consciousness; some remain conscious up until the final 10 to 15 minutes of life.
A short attention span or difficulty processing information becomes more common as death approaches. Keeping sentences or questions short and allowing time for the patient to process both the question and the response to the question may assist with communication. The APN must evaluate if the difficulty in concentration is an early sign of delirium and, if present, treat it appropriately (see Chapter 24).
Agitation or delirium at end-of-life can be caused by physical discomfort, emotional and spiritual distress, medications, or dehydration. The APN should assess for any conditions or medications that might contribute to delirium and treat them appropriately based on the cause and the patient’s proximity to death. One factor that may contribute to delirium in the final days or hours of life is sudden discontinuation of specific medications, such as analgesics and anxiolytics, by caregivers “because the patient didn’t ask for them.” Withdrawal from nicotine can be managed with a transdermal nicotine patch, and a benzodiazepine may be required to treat the delirium associated with alcohol withdrawal. Unresolved emotional or spiritual issues may also contribute to agitation and should be evaluated.
Circulatory Changes
Initially, the patient may become tachycardic as the body tries to compensate for the decreased cardiac output. However, over time the heart rate begins to slow (Moneymaker, 2005; Pitorak, 2003). This change can be used to signal that death is approaching and to help the family acknowledge that death is imminent.
With the decreased cardiac output, the skin may become cool and clammy. The patient often appears pale but may initially be flushed (Moneymaker, 2005; Pitorak, 2003). The skin may change from being uniformly pale to varying shades of red, blue, and purple. The soles of the feet, knees, ankles, and elbows are first to develop a blotchy, mottled appearance. Venous blood pools in dependent areas of the body, such as the sacrum and lower back (Ferris et al., 2003; Moneymaker, 2005; Pitorak, 2003).
Decreased Urine Output
Reduced blood flow to the kidneys causes a decrease in urine production. In addition, the patient’s fluid intake is generally decreased, which also contributes to this syndrome. As awareness decreases, the patient may experience urinary retention or incontinence (Ferris et al., 2003; Moneymaker, 2005; Pitorak, 2003). A lack of urine output does not mean that there is no urine in the bladder. A thorough physical examination is necessary to identify a distended bladder, which may contribute to discomfort and possible agitation. Intermittent catheterization may be warranted in patients who are positive for urinary retention, and the decision to provide ongoing catheterization should be considered on an individual basis.
Changes in Breathing Patterns
As the chest wall muscles weaken, breathing may be shallow with an increase in the respiratory rate (Ferris et al., 2003). Patients who experience tachypnea and dyspnea should be properly evaluated, and the appropriate interventions should be initiated (i.e., opioids, bronchodilators, anxiolytics, etc.) (see Chapter 27).
Declining cardiac and respiratory function often precipitates hypercapnia. Over time, the brain becomes less responsive to the rising carbon dioxide levels, resulting in irregular breathing patterns, which are commonly known as Cheyne-Stokes respirations (Ferris et al., 2003; Moneymaker, 2005). Supplemental oxygen does not alter this symptom, and patients may find masks or cannulas uncomfortable. However, pulmonary patients who have lived many years with supplemental oxygen may continue to find comfort in knowing that they have their oxygen. Family members may find watching the progressive lengthening of apnea particularly distressing and may require additional interdisciplinary support during this time.
Saliva and oropharyngeal secretions may accumulate in the upper airway, leading to gurgling respirations, often called the “death rattle” (Ferris et al., 2003). Suctioning is rarely helpful as the secretions tend to reaccumulate and the irritation of the catheter may stimulate additional secretions. Yankauer suctioning may be an uncomfortable experience for the patient, especially if he or she is dyspneic (Furst & Doyle, 2003). An alternate approach is to reposition the patient by rolling to a side-lying position or raising the head of the bed. If position changes are ineffective, consider the use of anticholinergics (e.g., scopolamine or hyoscyamine) via the sublingual, buccal, subcutaneous, or transdermal route (Furst & Doyle; Pitorak, 2003). It is important to note that anticholinergics do not affect existing secretions; therefore, earlier initiation is paramount in treating this symptom. It is also important to identify whether the patient’s existing medications have anticholinergic properties (e.g., chlorpromazine, prochlorperazine, bronchodilators). Adding additional anticholinergics may lead to xerostomia and, if coupled with the drying effects of opioids, may precipitate discomfort. Anticholinergics can also lead to sedation and confusion, particularly in the dehydrated elderly patient. Teaching caregivers the importance of good oral care will ensure comfort. The APN should consider being proactive about medicating appropriately to help reduce the incidence of noisy respirations, especially in patients with an underlying cardiac and pulmonary diagnosis.
Decreased Interest in Food Intake
Although many factors contribute to diminished nutritional intake throughout the disease progression, physical weakness at end-of-life often contributes to dysphagia (Ferris et al., 2003). It is hoped that the advantages and disadvantages of artificial nutrition have been discussed throughout the course of the patient’s care. At this time, the APN can reinforce that artificial nutrition during the dying phase often does not contribute to physical comfort or prolong life (Strasser, 2003). This can be an emotionally charged issue and should be met with supportive guidance for the patient and family. At times, cultural or emotional considerations make it appropriate to consider a trial of nutritional augmentation to support the patient and family. The patient and family should be made aware of the limited time associated with a “trial” and to assess and evaluate for any untoward side effects.
Nearing Death Awareness
Callanan and Kelley (1993) defined nearing death awareness as a special knowledge about the process of dying that reveals what dying is like and what is needed in order to die peacefully. Patients may describe or discuss being in the presence of someone not alive, seeing a place, knowing or choosing when death will occur, preparing for travel or change, needing reconciliation, being held back, or having symbolic dreams. While not universal, these experiences are common and it is helpful to discuss nearing death awareness with patients and families to help to normalize these experiences. Some of these experiences may be spiritually and emotionally comforting to the patient and his or her caregivers.
Inability to Close Eyes
Patients may lose the ability to close their eyes completely when asleep, which can be very disturbing to family members. This occurs most often in patients with significant fat and muscle wasting from cachexia. The loss of the retro-orbital fat pad allows the eye to fall farther back into the eye socket, and sometimes the eyelids are not long enough to cover the additional distance back as well as all of the conjunctiva, leaving part of the conjunctiva visible while the patient sleeps (Ferris et al., 2003). Maintain eye moisture with artificial tears, eye lubricants, normal saline drops, or a moist cloth covering the eyes.
Changes in Sensory Perception
Visual acuity may decline and there may be increased sensitivity to bright light (Berry & Griffie, 2005). Bright lights, including ceiling lights or bright sunshine through a window, should be avoided. It is believed that patients are able to hear even when they are unable to respond during the final days and hours. The APN should encourage caregivers to talk to the patient in a soft voice and/or to play music that the patient enjoys. And family members should be cautioned to not have conversations “over” the patient or say anything that they do not want the patient to hear.
CARING FOR THE CAREGIVERS
Preparing the patient and family for the death event and the time immediately after death is an important intervention for the APN. An open and caring discussion of what to anticipate in the dying process reduces the incidence of fear and apprehension. These discussions provide the APN with the opportunity to evaluate the caregiver’s ability to support the patient through the dying process and to make plans for any additional caregiver support or a transfer to a different care setting, as appropriate, when death approaches.
Transfer from the home setting may lead to feelings of guilt in the caregivers, especially if the patient communicated a desire to die at home. Some guilt may be assuaged by reinforcing that the most important goal is to keep the patient as comfortable as possible and that the family’s decision to transfer the patient is indeed in the best interest of the patient.
Family members may not be confident that they will be able to identify when death has occurred. The APN can provide the family with education on what to expect at the time of death. This includes cessation of breathing and heart rate, dilated and fixed pupils, and the potential for bowel and bladder incontinence when rectal and bladder sphincters relax. Caregivers should know who to notify at the time of death to initiate the official death pronouncement and to make arrangements for transport of the deceased to the funeral home or elsewhere. The clinician should verify that the caregivers have the appropriate contact information. Likewise, the family should have an understanding that in the event that an ambulance is called, the emergency medical services personnel are often required to attempt resuscitation unless there is an accepted “do not resuscitate” order—this varies from state to state.
CARE AT THE TIME OF DEATH
If present at the time of death, clinicians have a unique opportunity to support the family, care for the body, and facilitate the initial process of grieving. Gentle, reverent care of the body after death conveys to the family the clinician’s care and concern for the person who has died. Ideally, the APN has previously discussed any important rituals for care of the body after death and has developed plans that respect special cultural and religious rituals (see Chapter 6). The clinician present at the time of death confirms these plans and contacts the appropriate funeral home personnel, religious leader, or lay personnel from the religious/cultural society.
Family members are often bewildered and need gentle guidance about what to do next (Kissane, 2003). Activities that assist in the early process of grieving include:
▪ Listening to the family as they reminisce about the deceased person’s life and/or dying
▪ Facilitating religious rituals by notifying a clergy or pastoral care worker
▪ Allowing the family time alone with the body as desired
▪ Allowing the family to participate in the care of the body as desired
The degree of involvement in the care of the body by family members will vary with cultural or religious backgrounds and personal preferences. Activities such as combing hair or helping to dress the patient in other clothes should be encouraged. Children may be included, depending on circumstances and their maturity. Prepare those caring for the body that when the body is turned, air may escape from the lungs, causing a “sighing” sound.
If only one family member is present at the time of death, the clinician should ask about other family members or friends who can be called to be present with the bereaved or accompany him or her home. Family members may want time to say their good-byes to their loved ones in ways that are meaningful to them, including talking to the deceased, saying prayers, or telling stories reminiscent of the deceased.
Clinicians should become familiar with the local laws regarding death pronouncement and notification, especially when it occurs outside of a health care institution. In some states, registered nurses or APNs can sign death certificates; in others, nonphysician clinicians report the absence of vital signs to physicians, who make the official pronouncement over the telephone; and in others, the funeral home is required to transport the body to an emergency department for death pronouncement. The need to notify the coroner’s office of a home death also varies from one municipality/county to another. The APN must know these laws and procedures to ensure a smooth transition from home to funeral home.
CARE OF THE BEREAVED
Bereavement care is an essential part of a comprehensive palliative care program (National Consensus Project for Quality Palliative Care, 2004). The APN plays an important role in anticipating grief reactions, providing support for the bereaved, and recognizing those responses that may indicate complicated grieving and making appropriate referrals.
Providing bereavement care requires an understanding of the normal grieving process and the tasks of grief work. Grief is a normal and expected reaction to a loss; family members will grieve the loss of their loved ones. One role of the APN is to reinforce that grieving is a healthy, necessary process that individuals must go through to be able to move on in their lives. Clinicians should validate as normal the manifestations that the bereaved may be experiencing. Normal manifestations of grief are listed in Box 3-1.
Box 3-1
Research Press Co.
| Psychological | Social | Somatic |
|---|---|---|
|
Numbness
Confused/unsure what to do
Disbelief
Sadness
Anxiety (mild to panic)
Anger
Guilt
Acute feelings of separation and yearning
Searching or calling out for the deceased
Dreaming about the deceased
Seeing, hearing, or feeling the presence of the decreased
|
Restlessness or inability to sit still
Painful inability to initiate and maintain organized patterns of activity
Social withdrawal
|
Appetite disturbances
Sleep disturbances
Crying
Sighing
Lack of strength
Physical exhaustion and lack of energy
Feeling that “something is stuck in the throat”
Heart palpitations
Shortness of breath
Nervousness or tension
Loss of sexual desire or hypersexuality
|
*All of these are normal manifestations of grief. However, if any exist for long periods of time or at a high level of intensity, consider a consult to evaluate for a complicated grief reaction.
Data from Rando, T.A. (1984). Grief, dying and death: Clinical interventions for caregivers. Champaign, Ill.: Research Press Co.
In addition to knowing the normal responses to grief, it is helpful for those working with the bereaved to understand the tasks of the grieving process. The following four tasks of mourning must be accomplished for a satisfactory conclusion to the work of bereavement (Worden, 1982):
▪ Accept the reality of the loss
▪ Work through the pain of grief
▪ Adjust to the environment in which the deceased is missing
▪ Emotionally relocate the deceased and move on with life
This last task is the most difficult. It involves finding a place for the dead in the grievers’ emotional lives that allows them to go on living effectively in the world. The grieving process takes time and energy.
The first year of bereavement is the most intense—the first birthdays, holidays, and anniversaries without the deceased, as well as the anniversary of the death, can be very difficult. The length of mourning, however, is proportional to the strength of the attachment to the lost person (Kissane, 2003). Palliative care and hospice bereavement programs generally follow families for 13 months after a death to provide support through this time. Table 3-2 identifies interventions to assist persons with the grieving process.
| Task | Interventions |
|---|---|
| Accept reality of the loss | Listen actively without judgment. |
| Encourage gentle exploration of what the future may look like without the deceased. | |
| Assess and encourage the development of social support systems. | |
| Encourage time with the body of the deceased at the time of death. | |
| Offer ample opportunity to repeat the story of the death; listen patiently and attentively. | |
| Normalize feelings through personal contacts and written materials regarding grief and loss. | |
| Avoid the use of platitudes. | |
| Attend the funeral or visitation if possible; send a personal letter or card to the family. | |
| Respect survivor’s feelings without judgment. | |
| Work through the pain of grief | Assist in identifying manifestations of grief and normalize them. |
| Assist the survivor in placing a meaning on the death. | |
| Adjust to the environment in which the deceased is missing | Assist the survivor in further identifying the meaning of the loss in practical terms. |
| Provide practical assistance with developing needed skills. | |
| Advise the survivor to minimize change and to grieve where things are familiar. | |
| Emotionally relocate the deceased and move on with life | Provide a nonjudgmental and supportive ear as the survivor explores this task. |
| Validate and normalize feeling associated with moving the thoughts and memories of the deceased to an effective place that allows for a reinvestment in life. | |
| Encourage attendance at grief and loss support or educational groups. |
Mourning the loss of a spouse is among the most intense and may continue for years. Spouses tend to play multiple roles in each other’s lives, including friend, confidante, lover, partner, and source of emotional and financial support (Dutton & Zisook, 2005). Therefore, the loss of a spouse represents multiple losses to the individual.
Most persons adapt to bereavement successfully, and it can even be associated with improved coping, personal growth, and a new appreciation for life (Dutton & Zisook, 2005). However, in a minority of the population, grief can be complicated. If any of the “normal” responses to grief are extremely intense or protracted, it may indicate a psychiatric disorder such as clinical depression, anxiety disorder, alcohol and/or other substance abuse, psychotic disorder, or post-traumatic stress disorder (Kissane, 2003). Referral to trained counselors, psychologists, or psychiatrists may be indicated.
Professional and nonprofessional caregivers from the health care system also experience grief when the patients they care for die. The grief of staff may be more intense when a patient has been under their care for a long period of time or when dealing with multiples losses. Bereavement support for staff, through self-care, support groups, and individual counseling, is essential.
CONCLUSION
APNs play an important role in the care of patients and families near death and afterward. The goals of care at this time are the provision of a comfortable dying for the patient, a positive experience for the family, and effective grieving for the bereaved. In order to accomplish these goals, the APN should evaluate and manage the physical, psychosocial, emotional, and spiritual symptoms in the days and weeks leading up to a patient’s death—while anticipating grief reactions and providing support to loved ones after the death event.
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