END-OF-LIFE CARE

Objectives:

1. Discuss personal and societal attitudes related to death and end-of-life planning.
2. Identify factors that are likely to influence end-of-life decision making.
3. Explore caregiver attitudes toward end-of-life care.
4. Discuss the importance of effective communication at the end of life.
5. Identify cultural and spiritual considerations related to end-of-life care.
6. Describe nursing assessments and interventions appropriate to end-of-life care.
7. Discuss the role of the nurse when interacting with the bereaved.
8. Describe the stages of grief

During the seventeenth century, the poet John Donne wrote, “No man is an island … any man’s death diminishes me,
because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.” In those
days, a death was acknowledged by a solemn ringing of church bells, much the way bells are rung at many funerals
today. Death was feared, but it was perceived as an inevitable part of life. Infants, children, and young adults routinely
died of infection, accident, and acute illness. Death was a familiar experience to all members of society. Because most
people died at home receiving care and comfort from family members, people of all ages were exposed to the realities
of death. Consequently, cultures around the world developed grieving rituals to help the deceased person’s family and
immediate community process and manage the experience of loss.
The end-of-life experiences are very different today. The advancements of science and technology have led to
unprecedented increases in the life expectancy over the last 100 years. Presently, almost 80% of all deaths occur among
people over age 65. With longer life expectancy, death is becoming increasingly associated with advanced age, usually
the inevitable progression of a chronic and/or debilitating condition. Typically, individuals with chronic conditions
experience repetitive episodes of health crises separated by periods of relative well-being. However, even though they
appear to recover between the episodes, each health crisis inflicts a certain amount of irreparable damage. Eventually,
the individual will run out of recuperative reserve and die.

Causes of Death in Adults Ages 65 and older

 Disease of the heart

 Malignancy neoplasms
 Cardiovascular diseases
 Chronic obstructive pulmonary disease ATTITUDES TOWARD DEATH AND END-OF-LIFE
 Pneumonia and influenza PLANNING
 Diabetes mellitus
 Alzheimer disease Extended life expectancy and advancement of sciences
 Nephritis, nephrotic syndrome, nephrosis have changed the average person’s experiences and
 Accidents perceptions of death. A large number of people in
 Septicemia Western societies have no direct experience with death
and dying until middle or late adulthood. They may
know someone who has died and may have attended a
memorial or a funeral service, but few have actually been in the presence of a dying person. However, interest in end-
of-life care has been increasing in recent years. This trend is being driven, in large part, by the Baby Boomer generation
who are dealing with end-oflife concerns related to their parents. Soon, these Baby Boomers will make up a large part of
the senior citizen population who will need to prepare themselves for the end of life.

In the past, health professionals often made the decisions about the end-of-life care with minimal input from
the patient and family. Physicians could unequivocally state, “We have done everything possible.” This is no longer true.
Today, health care consumers want to actively participate in the decision-making processes affecting their health and
well-being. There is a growing understanding among health professionals that health care consumers have a right to
guide their care according to their personal beliefs and preferences. The role of health professionals has shifted from
that of a decision maker to that of a service provider whose primary responsibility is to help consumers make informed
decisions. Consequently, the approach to end-of-life care has shifted from a purely medical focus to a more holistic
approach that takes into consideration consumers’ personal values, cultural and spiritual beliefs, and life experiences.
For example, some older adults and their families still prefer treatment modalities that prolong life and want to receive
every treatment available. Others prefer a comfortable death in the presence of loved ones.

Many people say that they do not fear death as much as they fear how they will die. Many people are
uncomfortable talking about death. Therefore, health care agencies now offer specialized services and referrals to
interdisciplinary teams that provide support to individuals, families, and others making decisions about end-of-life care.
Family members, nurses, and other caregivers must be able to communicate about end of life to provide good care for
older people nearing the end of their lives. These discussions are usually not as traumatic for the older adult as they are
for younger people. By the time people reach advanced age, most have already experienced the death of loved ones.
Parents, spouses, siblings, friends, and even children or grandchildren have died from many causes and under widely
differing circumstances. These experiences generally help older adults determine what type of care they do or do not
want as the reality of death approaches. Most alert older adults are quite candid in expressing their wishes if
approached in a sensitive but matter-of-fact way.

Ideally, discussions regarding end-of-life care and planning for death should occur before a health crisis arises.
This offers older adults enough time to make decisions when they are calm and can evaluate their situation objectively
and according to their personal values. When important decisions regarding end-oflife care are avoided or delayed,
family members and friends of the dying person may have to make decisions in a time of crisis. Unfortunately, they are
likely to be overwhelmed by the approaching death of a loved one and may not be able to clearly identify and articulate
the desires of the dying person. Consequently, their decisions may be guided by their own beliefs and values rather than
the desires of the dying person.

Family members may initiate discussion about endof-life preferences with their loved ones after watching a
show, or reading a news article, that deals with dying. Similarly, the discussion may be initiated during gatherings where
the family reminisces about loved ones who have died, or following the death of a friend or a family member. Nurses
working in outpatient settings can initiate the discussion while reviewing patient records. You can ask the older adults if
they have advance directive documents and offer information about end-of-life care planning. Admission to an acute
care setting following a health crisis offers another good opportunity to educate older adults about end-of-life care.
Once the initial crisis has passed, the older adult usually has a high level of consciousness regarding death and is more
likely to recognize the need to make end-of-life care preferences known. You can assist by providing the materials
needed to initiate advance directives or by offering a referral to a social worker or appropriate community resources.

ADVANCE DIRECTIVES

Specific end-of-life decisions can be expressed in advance directives and physicians orders for life sustaining treatment
(POLST). These documents specify the type and amount of intervention desired by someone. Once initiated, they
remain in effect until changed. Health care consumers should provide copies of their advance directives to their primary
care providers, the person holding durable power of attorney, and any other person or health care agency who might be
involved in their care. This can prevent last-minute confusion and possible violation of their wishes. If a person does not
wish to be resuscitated, this has to be accurately recorded in all of their health care records and communicated to
anybody potentially involved in resuscitation efforts. The person can choose to wear a bracelet. Caregivers must include
this information when transferring care, and if a POLST is in effect, it should be visibly posted in the home.

There is no single right plan for the end of life. The best plan is one that reflects the individual’s values and
beliefs. Guidance and support from physicians, clergy, nurses, social workers, and family can help a dying person make
these significant decisions, but each person must ultimately make their own choices.

The decisions about end-of-life care are not set in stone and can be changed as the situation changes. To make
an informed decision about a specific intervention or treatment, a patient must have enough information including:
(1) the amount of time a treatment will add to life;
(2) the quality of life with this treatment;
(3) the amount of pain, disability, or risk involved with the treatment;
(4) the amount of time involved in the treatment;
(5) the cost of treatment and whether it is covered by insurance;
(6) the need for and availability of caregivers; and
(7) the availability, benefits, and risks of other treatment options.
 The information must be provided by the practitioner providing the treatment, but patients have a right to
discuss their treatment options with anybody, including their loved ones, who might help them make decisions for their
treatment. If they are not satisfied with the information received from a specific health care practitioner, they have the
right to request further consultation with another practitioner.

CAREGIVER ATTITUDES TOWARD END-OF-LIFE CARE

Even caregivers who routinely care for critically ill or dying patients may have difficulty accepting death. Many health
care professionals have become so focused on preventing illness or curing disease that they are more likely to view
death as a personal or professional failure rather than the inevitable end to the human experience. All caregivers,
including nurses, physicians, social workers, family members, and others playing a role in end-of-life care, need to learn
to recognize their own attitudes, feelings, values, and expectations about death. They need to explore the professional
literature that discusses legal, ethical, financial, and health care delivery issues related to end-of-life care. Everybody
involved in the care of a dying person should collaborate with each other to provide the dying person with holistic care
that meets the patient’s physical, psychological, social, and cultural needs. In addition, they need to be able to address
the needs of the family, friends, and significant others as they face grief, loss, and bereavement at the end of life.
Caregivers need to overcome any feelings of frustration or ineffectiveness. They need to learn when and how to shift
from the aggressive medical interventions designed to cure or extend life to more palliative and holistic interventions
designed to enable the dying person and his or her loved ones to experience a “good” death characterized by comfort,
peace, dignity, and caring.

VALUES CLARIFICATION RELATED TO DEATH AND END-OF-LIFE CARE

Beliefs, attitudes, and values regarding the experience of death and end-of-life care vary widely. Individuals’ responses
are influenced by their age, gender, culture, religious background, and life experiences. Caregivers should reflect on
their personal values related to the end of life to identify those values that are likely to influence their decision-making
processes and behavior when caring for dying patients. Ethical dilemmas relating to end-of-life care are more likely to
occur when the value systems of the patient and of the caregiver differ significantly. Understanding the value systems of
others can help the nurse provide quality end-of-life care, even when the nurse does not share the same values.

WHAT IS A “GOOD” DEATH?

Many groups in the United States and abroad have conducted research to identify specific end-of-life outcomes that
are most valued and desired by those nearing the end of life and by their families. Themes throughout all of the studies
indicate that given their choice, most people wish to be treated with respect and dignity and to die quietly and
peacefully with loved ones nearby. Box 15-2 identifies the common threads identified by these studies.

Nurses need to be able to assess the needs of a dying person and plan the care accordingly to facilitate healthy
experience of death and dying. Human needs at the end of life follow the universal pattern of human needs. Figure 15-1
summarizes the needs of dying person using Maslow’s Hierarchy of Needs.

Summary of Patients’ Wishes Related to End of Life

 Most dying patients desire to:
• Be able to issue advance directives to ensure their wishes are respected
• Be afforded dignity, respect, and privacy
• Know when death is coming and what to expect
• Have access to information and options related to care
• Retain control of decision-making regarding care
• Have control over symptom and pain relief
• Have access to emotional, cultural, and spiritual support
• Retain control regarding who may be present at the end of life
• Know possible options (e.g., hospital, home care, and hospice) and have a choice
regarding where and how death will occur
• Have time to say goodbye to significant others
• Leave life when ready to go without unnecessary or pointless interventions

WHERE PEOPLE DIE

Studies indicate that 90% of people wish to die at home. In spite of that, a vast majority of deaths occur in institutional
settings, with less than one-fourth of people dying at home. Approximately half of deaths occur in hospitals, and
another one-fourth occur in extended-care facilities. Death in hospital settings is particularly problematic because
hospitals are focused on curative and restorative care and may not be ideally suited for end-of-life care. The focus of
care in extendedcare facilities is on care, not cure. They might offer experience that is closer to the experience of dying
at home, but even these facilities may not be able to fully focus on the dying person’s needs.
The concept of hospice care was developed in response to the challenges of providing end-of-life care. Rather
than referring to a specific care setting, hospice denotes a care philosophy with the focus on humane, dignified, and
compassionate care of the dying persons and their loved ones. Hospice care has been gaining recognition since 1983,
when Medicare Hospice Benefit began funding this type of care. It can be delivered in the community or in institutional
settings. In 2011, an estimated 1.65 million health care consumers in the U.S. received hospice care (National Hospice
and Palliative Care Organization, 2012). However, in spite of the growing number of hospice users, a lot of dying people
still do not receive adequate end-of-life care, mainly because of the failure of health professionals to initiate hospice
care in a timely fashion. Nurses can facilitate the process by advocating for their patients and initiating early referrals to
hospice care when appropriate.

PALLIATIVE CARE

According to World Health Organization, palliative care focuses on reducing or relieving the symptoms of a disease
without attempting to provide a cure; it neither hastens nor postpones death. Palliative care affirms life while accepting
death as its normal conclusion. Interventions are designed to optimize the patient’s ability to live as active and complete
a life as possible until death comes. Competent adults, regardless of age, who are suffering from life-threatening
diseases such as cancer or advanced chronic conditions, such as emphysema or end-stage renal disease, can, and often
do, make the decision that they no longer desire aggressive treatment, such as chemotherapy, assisted ventilation, or
dialysis. This does not mean that these patients forego all medical intervention. They will still receive treatments that
support the goal of optimizing their ability to live as active and complete a life as possible until death comes. For
example, wounds will be treated and a fracture will be placed in a cast. Individuals who choose palliative care typically
choose to decline other procedures such as cardiopulmonary resuscitation (CPR), artificial ventilation, and artificial
feeding, which may prolong the dying process. Medical treatment and nursing care focus on actions that enable the
dying person to have the highest quality of life for whatever time remains.

COMMUNICATION AT THE END OF LIFE

Effective communication is a challenge at the best of times. Unique demands of end-of-life care can make
communication even more challenging. Everything takes on increased importance in this once-in-a-lifetime experience.
There is no chance to do things over, so it is essential that everything is done right.
One of the most important things caregivers can do is to spend more time with the dying person and to
encourage family members to do the same. This might be difficult for nurses who typically care for multiple patients and
have to manage competing priorities. To adequately prioritize care, nurses must understand the importance of
therapeutic communication with the dying person and his or her loved ones. Studies indicate that the majority of people
do not want to die alone. In spite of that, research shows that dying people in institutional settings spend a great deal of
time alone. One study done in a hospital reports that physician visits average 3 minutes, nursing personnel visits
average 45 minutes, and family visits average only 13 minutes per day. These statistics mean that the dying person is
alone for 23 of 24 hours. Another study revealed somewhat better, but still worrisome, results. In this study, dying
patients spent 18 hours and 39 minutes alone in their rooms. Nurses and nursing assistants spent by far the greatest
amount of time, 94 minutes of the day, with the dying person, but most of this time was broken into 45 short, task-
oriented visits. It is interesting to note that physicians spent more time than expected with patients who had “do not
resuscitate” (DNR) orders and those receiving palliative care for cancer. Patients with dementia received the least time
from physicians. Attention from family members varied widely based on age, availability, culture, and real or perceived
proximity to death.

To establish rapport and maintain therapeutic relationship with the recipients of care, the nurse needs to know
as much as possible about the dying person and his or her loved ones including personal and spiritual beliefs, cultural
background, values, and personal experiences that may influence decision making and the content of the advance
directives for health care. Nurses must demonstrate verbally and nonverbally that they are approachable and are
neither detached nor indifferent. A good way to start is by consistently addressing or referring to the dying person by his
or her name. This shows respect and helps the dying person maintain a sense of self-worth and dignity. An empathetic
word and gentle touch can demonstrate caring. Holding a hand, gentle repositioning, providing good basic hygiene, and
maintaining an aesthetically pleasing environment free from odors, clutter, and unnecessary medical equipment
communicate that the dying person is respected and valued. Nurses must demonstrate willingness to listen to
suggestions, requests, or criticism made by the dying person or by the family. Near the end of life, emotions run high,
and people often feel powerless. The family members and friends of the dying person may deal with their feelings of
powerlessness by voicing their frustrations with the quality of care.

Nurses must listen to these criticisms without becoming defensive, whether the criticism is justified or not.
Prompt response to requests and ongoing communication explaining the purpose and goals of care communicates that
caregivers recognize the importance of the dying person’s needs.

Answer all questions honestly and directly. If the information is not readily available or cannot be disclosed,
make sure that the dying person and his or her loved ones receive the necessary information in a timely manner.
Discussions regarding end-of-life experiences and care should be clear and truthful. The dying person and loved ones
must receive as much information as possible about what to expect. Avoid using complicated technical terms and
whenever possible, provide explanations using plain language and simple statements. Even simple information or
explanations can be confusing at stressful times and may need to be repeated. Try to prevent or correct any
misunderstandings or mistaken perceptions by summarizing, clarifying, and restating what the patient said. Allow time
for response and further clarification if necessary.

Within culturally acceptable parameters, actively involve the patient in discussion regarding the plan of care.
Nothing is more demeaning or frustrating to a dying person than having caregivers discuss and plan the care without his
or her input. Nurses can help the patient work through fears and end-of-life decisions by spending time listening in a
nonjudgmental manner. However, sensitive communication cannot be hurried or scheduled like a procedure. Therefore,
nurses need to manage the care in way that would allow them adequate time to engage with the dying person and his
or her loved ones. Nurses must ensure that the amount of care delegated to ancillary personnel does not limit the
availability of professional nursing support to the ones who need it most.

Use reflective and open-ended statements such as: “There seem to be things that are worrying you,” “If you
want to talk, I’ll listen,” or “It must be hard. Do you want me to sit with you for a while?” as ways to encourage a
conversation. Start communication from where the patient is, then go where they wish to go. Ensure that the
communication is focused on the patient rather than the caregiver. The dying person and his or her loved ones should
be free to discuss the things that concern them the most, not the topics concerning the caregivers.

Whenever possible, the dying person should have adequate privacy to communicate freely and should be
undisturbed by unnecessary noise and commotion. Reassurance that the nurse will keep information confidential may
encourage the dying person to communicate feelings or concerns more freely. This may also encourage a dialogue that
can help the dying person begin a life review through which they can validate life experiences and enhance his or her
level of peace.
 When death is near, family members or significant others may wish to remain with the dying person. Most
facilities encourage this and provide some accommodations for their comfort. The nurse often needs to explain what to
expect as death approaches; how to best communicate with the patient; and what, if anything, loved ones can do to
help make the end of life as peaceful as possible.

After the person dies, the nurse need not be afraid to express emotion at the loss. Often, particularly in
extended-care settings, the nurse and other caregivers have developed a true affection for the person and will need to
grieve the loss. Family members often report that seeing the nursing staff’s grief actually helped them cope with the
loss, because they knew that other people cared enough about their loved ones.

SPIRITUAL CONSIDERATIONS

Religious and spiritual beliefs play an important part in the lives of many older adults and may grow even more
important as they approach the end of life. Older people facing the reality of death and dying often lean on their
spiritual beliefs in an attempt to make sense of their lives and deal with uncertainties of death. This may lead to
increased spiritual or religious interest and concern, even among individuals who did not express any particular interest
in religion for most of their lives.

There are far too many variations in spiritual beliefs and practices to thoroughly address them in this textbook.
Growing recognition of the importance of spiritual support to the dying persons and their loved ones has enticed many
health care agencies to develop specialized services that provide spiritual care. They are often referred to as pastoral
care and may employ clergy, nurses, and other professionals trained to provide support to patients in need of spiritual
support. To meet the spiritual needs of diverse populations, spiritual care services may use a variety of religious
counselors including priests, pastors, rabbis, imams, mullahs, shamans, and other ministers. The counselors can be a
valuable resource to nurses and other caregivers who are trying to tailor care to specific spiritual beliefs and practices.

Nurses play an important role in helping dying persons meet their spiritual needs. The following are some
guidelines to remember when attempting to meet the spiritual needs of the dying person:
1. Determine whether or not any specific religious beliefs or practices are important to the patient or his or
her family members.
2. Assess whether or not the patient has a preferred spiritual counselor. When no particular individual is
identified, ask the patient whether he or she wishes to receive counsel from anyone else. Spiritual counseling is
very personal, and the dying person should have the right to select whomever he or she wishes.
3. Offer choices when available. Most hospitals or extended-care facilities maintain a list of ministers who will
visit the dying without concern to denomination or church affiliation. Not all spiritual counselors are equally
sensitive to the needs of the dying. If one spiritual counselor does not meet the patient’s needs, make the
patient aware that there are others available.
4. Determine whether or not the person wishes any spiritual counselor to be notified. Respect the wishes of
people who do not wish spiritual counsel. Spiritual counseling can be very beneficial when desired. When it is
not desired, intervention can cause more problems than it solves.
5. Demonstrate respect for the patient’s religious and spiritual views. Provide the dying person time for
private thought, prayer, or meditation when desired. Incorporate important activities and items into the care
plan. The religious rituals related to dying can differ widely among cultures, and the nurse should help the
family whenever possible to facilitate their practices even if this involves moving furniture to face a specific
sacred direction, opening windows, or providing space for a large group of family members.
6. Do not impose your own beliefs on the patient. The nurse should keep the focus of spiritual discussions on
the patient and his or her beliefs, not on the nurse’s beliefs.
7. Be present, be available, and listen. The nurse cannot and should not attempt to solve the patient’s
problems, but empathy demonstrates acceptance and caring. This allows the patient to feel less alone and often
decreases spiritual distress.
8. Keep the patient’s relevant religious symbols readily available and treat them with respect.
9. Avoid moving beyond role and level of expertise unless you have specific ministerial or pastoral training in
death and dying.

DEPRESSION, ANXIETY, AND FEAR

An older man once said, “I think that waiting to die is worse than death itself.” It is one thing to know that you will die
eventually; it is another to realize that you have lived most of your life and that death is likely to be a reality soon. At
that point in life, individuals must decide whether they will give up and let fear, anxiety, or depression overwhelm them,
or whether they will do something to remain in control of whatever time they have remaining.

Nurses can help dying people cope with emotional distress by listening to their concerns and helping them find
constructive ways of dealing with these concerns. Encourage the dying person and his or her loved ones to participate in
creative and pleasurable activities. Art, poetry, and other writings can provide a means for many dying patients to
communicate their feelings and leave a tangible message for their family and loved ones. Physical activity can help
reduce both physical and emotional tension. Relaxation classes or support groups designed to help people dealing with
terminal conditions may help decrease social isolation.

Everyone has good days and bad days. When there are more bad days and these bad days seem to be getting
worse, professional help may be necessary. A psychological evaluation may be needed to determine the nature and
severity of the problem. Counseling and use of antidepressant or antianxiety medications can help.

Anger is not uncommon, particularly soon after a terminal diagnosis is made. The nurse should accept this; allow
patients the opportunity to verbalize their anger, and then help them find ways to move forward and to cope with the
future.

DEATH

The experience of death in an institutional setting is very different from the experience of death at home. Family
members, significant others, and friends often wish to be present at the time of death. However, some families might be
able to spend only a limited amount of time with their dying loved one and wish to be called only when there is a
significant change in the person’s status. Others would rather be notified only after death has occurred. Family decisions
are influenced by a multitude of factors including coping ability, access to resources, work situation, health of family
members, and personal factors such as the age, health, and relation to the dying person. Everybody copes with the
death of a loved one in a unique way and needs to be supported in a professional and non-judgmental manner. The
following strategies can help caregivers provide the support to the family through this experience:
1. Discuss the family’s wishes early, so that appropriate notification of family, clergy, and others can take place.
2. Record and communicate instructions on who to call, how they can be reached, and whether there are any
limitations regarding time of day.
3. Offer family members the opportunity to participate in the care of the dying person. Families often want to
be helpful. Educate them and provide them with opportunities to participate in the care.
4. Allow family members to express their emotions and provide them with support. Some family members may
be hesitant and may need permission to express their emotions, although others might be very demonstrative
when it comes to grief. Ensure they feel comfortable and supported.
5. Provide frequent updates on the condition of the dying person, and be available to answer questions.
Families often need assurance that the person is comfortable. Provide comfort measures and be sensitive to the
needs of the family members.

RECOGNIZING IMMINENT DEATH

Some physiological changes may indicate approaching death, but there is no way to predict the exact moment or
manner of death. Some indicators of imminent death may include, but are not limited to, the following:
1. Increased sleepiness
2. Decreased responsiveness
3. Confusion in a person who has been oriented
4. Hallucinations about people (sometimes deceased family members)
5. Increased withdrawal from visitors or other social interaction
6. Loss of interest in food and fluids
7. Loss of control of bowel and bladder in a person who has been continent
8. Altered breathing patterns such as shallow breathing, Cheyne-Stokes respirations, and rattling or gurgling
respirations
9. Involuntary muscle movements and diminished reflexes
Death may be sudden and quick, or it may be slow and gradual. Some individuals experience acute physiologic changes
that results in relatively quick death. They are alert and talking one minute and gone the next. In other individuals,
bodily function shuts down system by system, heart rate slows, respiration fades, and the individual slowly slips away.
Signs of death include absence of heartbeat and spontaneous respirations; open eyes without blink; nonreactive pupils;
flaccid jaw with slightly open mouth; and lack of response to touch, speech, or painful stimuli. Legal pronouncement of
death is made by the physician.

If family members are present when the patient expires, they should be allowed to sit at the bedside and say
farewells or grieve as long as necessary. Discretely remove oxygen, IV lines, and other visible medical devices, and turn
off monitors and other noise-creating equipment. Accommodate and show respect for cultural practices regarding
grieving and preparation of the body whenever possible. Give the family adequate amount of time and provide them
with nursing care until they are ready to leave. This is not the time to avoid the family. A word of support, a simple hug,
or other demonstration of sympathy by the nurse is long remembered by family members.

Allow the deceased person to remain in the room if other friends or family members who were not present at
the time of death wish to assemble. The deceased person may remain in the room until the funeral director arrives or
may be transported to the morgue, depending on agency policies. When death occurs in a shared room, make
arrangements to provide privacy without unduly disturbing the surviving resident. Some facilities provide a special room
for these situations.

Perform postmortem care in accordance with cultural and spiritual preferences. Typically, this includes
removing any soiling and applying a clean sheet or shroud according to agency policies. In most cases, the head is
elevated slightly to prevent discoloration. Gently close the eyes, insert dentures, and position a small towel to close the
mouth. This gives the face a more natural appearance if a funeral visitation is desired. Most health care facilities have
policies and guidelines to guide the personnel through administrative and legal procedures related to death. The nurse
in attendance needs to note and document the time of death if witnessed. When death is not witnessed, time of death
needs to be approximated. Notify the physician and funeral director specified by the family according to agency policies.
Identify, list, and bag personal belongings for return to the family.

BEREAVEMENT

Death typically elicits a complex psychosocial and physical response in everyone associated with the deceased person,
be it as a significant other, a family member, a friend, or a caregiver. Entire books have been written on coping with
death and dying. This chapter provides only general guidelines (Box 15-3). Nurses who deal with dying patients and their
loved ones should plan to obtain some additional resources from the library or bookstore.

There is no single “good” or “right” way to feel after a person dies. Survivors often experience ambivalent
feelings regarding the death. On one hand, they feel a sense of relief that the struggle is over and that the loved one is
at rest. On the other hand, they seriously grieve and miss the loved one’s presence. Even when death is anticipated, the
initial feelings of shock and numbness are unavoidable. For a few weeks after death, people describe their behavior as
“being in a fog” or “going through the motions.” After this initial time, the reality of the loss strikes and survivors are
likely to experience signs of depression, such as loss of appetite, inability to sleep, avoidance of social interaction, and
uncontrolled bouts of crying. They may also be angry with the person who died and voice statements such as, “How
could he do this to me?” Talking to the deceased loved one is not abnormal and may be useful for some individuals.

In normal grieving, the frequency and severity of these signs of grieving gradually decrease over time, but the
loss of a loved one never goes away completely. Life goes on, but it is not the same as before. Life does not seem to be
the same without the loved one. Most people who lose a loved one require at least a year to work through the most
severe phase of emotional distress. Grief counselors often evaluate a person’s responses at the first anniversary of the
death as an indicator of his or her adjustment. It is common for grieving to last longer than a year, but severe
adjustment problems at this point indicate the need for more aggressive help.

Nurses can help grieving individuals in several ways. They can encourage the grieving person to take time to cry
and to express his or her feelings. They can listen to the grieving person talk about the loved one. Review and
reminiscence about good times may bring tears, but it gives the person opportunities to gain strength from having
known the loved one. When appropriate, recommend bereavement support groups, which use sharing of mutual
experiences to help individuals coping with loss and grief. Collaborate with other health team members to provide
support and initiate a referral to a grief counselor for individuals who are experiencing severe or protracted grief.
Kubler-Ross Stages of Grief

The following stages were identified by Dr. Elizabeth KüblerRoss in her groundbreaking book, which was the first to
address grief related to death and dying. Although listed in a sequence, these stages do not necessarily follow in this
specific order. A person may move in and out of the stages unpredictably and erratically.

DENIAL Numbness protects the survivor from the intensity of the loss. This typically decreases as the individual
acknowledges the reality and permanence of the loss.

ANGER Feelings of anger are often directed at the deceased or at a deity because the survivor feels abandoned.
Anger is one method for dealing with the feelings of helplessness and powerlessness. Anger tends to decrease over
time.

BARGAINING Survivors try to identify whether they could have done something different to prevent the loss. Some
may make resolutions to change their behavior or lifestyle based on these reflections. Remorse and guilt that they did
not do enough are common and can slow the grief process.

DEPRESSION Feelings of emptiness, loneliness, and isolation are common after the loss of a loved one. Frequent
crying spells, inability to sleep, inability to concentrate or make decisions, and loss of appetite are typical. Some
survivors describe their lives as colorless and meaningless. Many people try to hide their feelings and suffer
needlessly. Support from family, friends, nurses, physicians, and bereavement groups can help the survivor work
through feelings of depression. Antidepressant medications are sometimes used on a short-term basis.

ACCEPTANCE There is no set time limit for grief over the loss of a loved one. Acceptance and healing occur slowly as
the person works through his or her feelings and reestablishes a meaning and pattern to life.