Home Health Care Management Practice OnlineFirst, published on February 21, 2008 as doi:10.
1177/1084822307311839
Caring for the Patient and the Family
in the Last Hours of Life
Karen A. Kehl, PhD, RN, ACHPN
Recognition of the signs and symptoms that are
common in the final hours of life and a basic
understanding of how to manage these signs and
symptoms are important to helping the patient
and family experience a good death in the home
setting. The most common signs and symptoms,
including pain, dyspnea, and terminal restless-
ness or delirium, and their management are dis-
cussed. Also addressed are other signs and
symptoms, such as cardiovascular signs and
symptoms including cold extremities, mottling,
and changes in vital signs; respiratory signs and
symptoms such as changes in breathing pattern,
noisy breathing, and mandibular breathing; and
neurological signs and symptoms such as disori-
entation, sensory changes, and semicomatose
state. Changes in metabolism such as fatigue,
surge of energy, and increased temperature are
presented, along with decreased intake, excre-
tion, and communication changes.
C
aring for patients who are nearing the end of
their life and their families is a privilege and a
challenge. When caring for these patients and
families in the home, often the nurse notices a shift
when less of the nursing visit is spent on providing
direct care for the patient and more is spent on prepar-
ing the family for the last hours and teaching them how
to care for their loved one. To be able to assist the
patient and the family at this sensitive and stressful
time, it is important to recognize the signs and symp-
toms that frequently occur in the last hours of life. In
Home Health Care Management & Practice / Month XXXX / Volume XX, Number X, xx-xx
DOI: 10.1177/1084822303311839
© 2008 Sage Publications
Copyright 2008 by SAGE Publications.
addition to recognizing these signs and symptoms, a
basic knowledge of interventions to manage the symp-
toms is needed to care for the patient and to assist the
family in preparing for what to do in the final hours.
Although it is impossible to accurately predict all of
the potential signs and symptoms that may appear in
the final hours for each individual patient, health care
providers and families should be prepared for the most
common signs and symptoms. These include pain, dys-
pnea, and delirium or restlessness (Ventafridda,
Ripamonti, De Conno, Tamburini, & Cassileth, 1990).
In addition, the health care professional may be able to
anticipate possible signs and symptoms through knowl-
edge of the pathophysiology of the dying person’s dis-
ease, and other medical problems experienced by the
patient. This article will review the most common
symptoms and appropriate management. An overview
of other symptoms frequently seen during the final
hours of life will be provided based on body systems.
SYMPTOMS AND SYMPTOM MANAGEMENT
Pain
Pain occurs in up to 96% of patients regardless of
diagnosis (Solano, Gomes, & Higginson, 2006). Many
people fear that pain will suddenly increase just before
a death. Although there is no empiric evidence of this
increase in pain, managing pain in the final hours can
Key Words: terminal care; dying process; family coping;
comfort care
2 HOME HEALTH CARE MANAGEMENT & PRACTICE / Month XXXX
present different challenges than managing pain earlier
in the disease process. The dying person may not be
able to verbally relate pain and other signs must be
assessed. Families may be concerned that every moan
or sound and every change in expression are signs of
pain. There are a number of pain assessment tools that
can be used with nonverbal patients (Herr, Bjoro, &
Decker, 2006). Pain can sometimes be recognized by
frowning or grimacing, facial tension, and guarding of an
area. Moaning is not a reliable indicator of pain because
some people moan in their final hours as a means of
vocalization, with exhalation, or as part of terminal rest-
lessness. Pain may also be exhibited by increased heart
rate. When in doubt, try an increased dose of pain med-
ication and see if the behavior diminishes.
Managing pain in the final hours is complicated by
changes in the patient’s condition which affect the
method of administration, absorption, and metaboliza-
tion of opioid medications. People frequently lose the
ability to swallow in the last hours and days of life. If
the patient has had their pain managed with long act-
ing oral opioids, it may be necessary to change to a
buccal, sublingual, rectal, subcutaneous, or intra-
venous method of administration. It is important to
remember that with rectal administration, some
patients require a higher dose to achieve the same
degree of pain management (Lugo & Kern, 2002),
whereas others require a lower dose because of exces-
sive sedation (Pasero & McCaffery, 1999). Another
issue affecting dosing is that as hepatic and renal func-
tion slow, opioid metabolites are not cleared from the
system as quickly. Routine doses or continuous infu-
sion of opioids may need to be discontinued if urine
output stops, and breakthrough dosing used instead for
pain management (Emanuel, Ferris, von Gunten, &
Von Roenn, 2006).
Use of transdermal fentanyl patches in the final
hours of life may also be problematic, although some
research shows good pain management with transder-
mal fentanyl in the final hours (Ellershaw, Kinder,
Aldridge, Allison, & Smith, 2002). As the circulation
changes, the fentanyl may not be absorbed at the same
rate, causing the patient to receive less or more med-
ication than needed. Changes in the skin such as
diaphoresis can make it a challenge to keep the patch
on in a manner that allows proper absorption of the
fentanyl. If the patches are not staying on or it seems
that it just is not working properly, it is best to supple-
ment the fentanyl with an opioid or change to another
method of pain management.
Dyspnea
Dyspnea is another symptom that occurs in many
dying persons. The incidence of dyspnea is up to 70%
in the last weeks of life (Reuben & Mor, 1986). More
than 26% of the families of home hospice patients in a
recent study believed that the dying person did not
receive enough help with dyspnea (Teno et al., 2004).
Treatment of dyspnea includes placing the patient in
an upright position, administration of oxygen if the
patient is hypoxic, and placing a fan in front of the
patient (Campbell, 2004). Opioids can alleviate respi-
ratory distress and are the primary pharmacological
treatment for terminal dyspnea. When patients have
anxiety related to the dyspnea, addition of a benzodi-
azepine in the medication regime may be helpful,
although benzodiazepines by themselves have not
been found to be an effective treatment for dyspnea
(Thomas & von Gunten, 2003).
Terminal Restlessness
Terminal restlessness or terminal delirium is a cluster
of symptoms that occurs in up to 88% of dying persons
(Fainsinger, Miller, Bruera, Hanson, & Maceachern,
1991; Lawlor et al., 2000; Lichter & Hunt, 1990; Roth
& Breitbart, 1996). The frequent nonpurposeful move-
ment, fluctuating levels of consciousness, inability to
concentrate and/or relax, and disturbances in sleep-rest
patterns can identify terminal restlessness. Terminal
delirium includes a rapid change in cognition and dis-
turbance of consciousness (Macleod, 2006). Both con-
ditions are challenging and frightening to family
members and are often the reasons for inpatient admis-
sion during the final days.
Treatment of terminal restless first requires a thor-
ough assessment to determine if there are other reasons
for the restlessness such as pain, nausea, bladder dis-
tention, constipation, dehydration, or nicotine with-
drawal. If any of these are present they should be
treated promptly. If the restlessness persists, treatment
with haloperidol, chlorpromazine, or a benzodiazepine
may be helpful (Kehl, 2004). It is usually most effec-
tive to give these medications by a nonoral route
because of difficulties with administration and the
desire for a more rapid onset of action.
Other Signs and Symptoms
Home care nurses and other health care professionals
can prepare families for other symptoms that are com-
mon in the final hours. By analysis of the patient’s ter-
minal diagnosis, other medical conditions, and current

signs and symptoms, the probability of the patient
experiencing some the following signs and symptoms
can be estimated. It is important not to overload
families with too much information on symptoms they
are not likely to see, but to try to adequately prepare
them for what they are most likely going to see.
Cardiovascular signs and symptoms. The cardiovas-
cular signs and symptoms are a result of decreased
blood pressure, which is often a result of dehydration.
Tachycardia is the first response to the decrease in blood
pressure and the heart rate may double. As the patient
becomes hypoxic and neurological function is impaired,
the heart rate decreases. As death nears, heart sounds
become faint and it can be difficult to assess the blood
pressure. There is no management needed in response to
these changes in blood pressure or heart rate. Vital signs
do not need be taken repeatedly unless requested by the
family. Families sometimes want to know the blood
pressure and heart rate and may ask if the nurse can tell
how close death is based on the vital signs. It is best not
to predict the time of death based on these signs but to
let families know that the changes indicate the time of
death is getting nearer.
As the peripheral circulation slows, the extremities
may become very cold, even if the central body tem-
perature is elevated. As blood pools in the dependent
areas of the body, mottling may be noted. Mottling
usually starts with the lower extremities and pro-
gresses upward, although it is sometimes noted first on
areas of low circulation such as the ears. With both
mottling and cold extremities, it is important to reas-
sure the family that these changes are a normal part of
the dying process. Usually the patient does not feel
cold, even if they are cold to the touch. Light blankets
may be used, but electric blankets or heating pads
should be avoided.
Respiratory signs and symptoms. In addition to dys-
pnea, as patients near death there are changes in the
breathing pattern that are often disturbing to family
members. Common breathing patterns include shallow
breaths, increased or decreased respiratory rate, pant-
ing, apnea, and Cheyne-Stokes breathing. Oxygen is
not recommended at this time because it does not
change the breathing pattern but may prolong the
dying process (Emanuel et al., 2006). It is important to
reassure families that these are normal breathing pat-
terns near the end of life and they do not indicate that
the person is suffering.
Kehl / CARING IN THE LAST HOURS OF LIFE 3
Audible secretions in the oropharynx and tracheo-
bronchial system often become loud and disturbing to
family members. Again, it is important to reassure
families that these noises do not indicate that their
loved one is in distress. Repositioning the patient with
the head of the bed elevated or on their side may alle-
viate the noisy breathing. Anticholinergic agents such
as scopolamine (1 to 3 transdermal patches every 72
hours or 0.2 to 0.4 mg subcutaneously every 4 hours),
glycopyrrolate (0.2 mg subcutaneously every 4 to 6
hours) or atropine drops administered orally may be
helpful in decreasing the secretions (Emanuel et al.,
2006). Suctioning is not recommended because most
secretions are out of reach and the trauma from suc-
tioning may increase secretions, cause the patient dis-
comfort, and frighten family members.
Another respiratory change is mandibular or reflexive
breathing. This pattern of breathing includes gasping
breaths and has been called “fish out of water” breath-
ing. It is also referred to as “agonal breathing,” a term
that should be avoided with families because they often
interpret it as “agony.” Mandibular breathing is often
easily recognized by those who have attended other
deaths, and is characterized by slow, sighing respira-
tions. In a patient who does not wish resuscitation this is
often the last breathing pattern before terminal apnea. It
is considered an irreversible sign of neurological
changes. Families should be aware that this is a sign that
the patient is nearing death, but be cautious not to pre-
dict the time of death based on this sign. Mandibular
breathing may last for a few breaths or may last hours to
days depending on the condition of the patient.
Neurological signs and symptoms. Neurological
signs and symptoms include terminal restlessness or
delirium, disorientation, sensory changes, and a semico-
matose state. Disorientation is a common change that
may occur hours to days before the death. The dying
person may have difficulty remembering where they are
or whom they are with. It is not unusual for the patient to
ask to go home when they are already at home in their
own bed. This disorientation is a sign of the permanent
neurological changes leading to death. It may be because
of hypoxia or metabolic changes. Families should be reas-
sured that this is a normal occurrence when approaching
death and should be encouraged to gently reorient the
patient as it is needed.
Sensory changes include increased sensitivity to light,
decreased visual acuity, and decreased sensation of touch
or hypersensitivity to touch. It is assumed that the dying
person continues to hear even when they cannot respond.
4 HOME HEALTH CARE MANAGEMENT & PRACTICE / Month XXXX
To accommodate these sensory changes, the environ-
ment should be controlled. Soft, indirect lighting is often
useful. Family members may need to get closer to the
patient to be identified and should identify themselves
when they enter the room or when they speak.
Although decreased sensation of touch is usually
more disturbing to the family than to the patient, hyper-
sensitivity to touch requires active management. It may
be manifested as restlessness when sheets or blankets
are tucked in or when the patient feels confined, or it
may include hyperalgesia. If every touch causes the
patient pain, medications should be reassessed. Opioid
toxicity may cause hyperalgesia, which can be reversed
with a reduction in the opioid dose or a change in med-
ication (Wilson & Reisfield, 2003).
Many patients enter a semicomatose state prior to
death. In this condition, the patient has little or no
spontaneous motor movement, speech, or response to
voice. The patient is lethargic and may be disoriented,
but can be aroused, usually by noxious stimuli. The
eyes may be closed or half open. When touched, the
patient usually does not respond, but they may groan
or make other noises when repositioned, especially if
it is painful. It is not known whether the patient is
aware of who is present, whether they are being
touched, or of any conversation in the room. Families
often want to know what the dying person is aware of
and how they should respond. It is appropriate to tell
families that we do not know how much of their sur-
roundings the patient is aware of, but to act as if their
loved one was aware but not able to respond.
Changes in metabolism. In the last hours, changes
in metabolism that occur include fatigue, surge of
energy, and increased temperature. Fatigue is often
present for days to weeks prior to the death and may
increase as death nears. In the final hours, the fatigue
may become so great that the patient cannot move in
bed or lift the patient’s head off of the pillow. This is a
normal change that families should be prepared for.
Even in patients who have considerable fatigue, the
patient may suddenly regain the energy to spend time
with family members, have a favorite meal, or engage
in a favorite activity. Families often see this as a sign
that their loved one is recovering their strength.
Usually this surge of energy lasts only a few hours to a
day. The patient then declines rapidly and often dies
hours to a few days later. Families are often surprised
and upset that they were not prepared for the death
because their family member was doing so well.
Encourage families to cherish every minute while their
loved one is awake and aware, warning them of the
possibility of rapid decline, so that if the patient’s con-
dition changes, the family will know they have taken
full advantage of the time they had together.
An increase in core body temperature frequently
occurs in the last hours of life. This is usually because
of a combination of dehydration and changes in the
hypothalamus as the neurological system shuts down.
Infection may also increase the temperature. Body
temperatures may increase to 105° F or higher.
Extremities may remain cold, even when the body
temperature is very high. Often the patient is in a semi-
comatose state and may not appear to be distressed
about the increased temperature. Acetaminophen sup-
positories are sometimes effective in reducing the
fever, but may lead to diaphoresis, which may be more
uncomfortable for the patient. A frank discussion with
the family about the benefits and the costs of giving
acetaminophen, against the goal of patient comfort
should guide the decision about giving the medication.
Cool damp washcloths across the forehead, and wiping
the patient with cool cloths gives the family a means to
show their care for the patient and may provide as
much comfort to the patient as medication.
Changes in intake. As death nears, even if a person
has been eating and drinking, they often lose the desire
to take in food or fluids. As their condition progresses,
many lose the ability to swallow. In most cases, pro-
viding nutrition by feeding tube or hydration by an
intravenous infusion is not helpful and may cause
more problematic symptoms such as edema, ascites,
and respiratory distress (Lanuke, Fainsinger, &
DeMoissac, 2004). It is important to remind families
that it is the disease that will cause the death of the
patient, and not withholding food or fluid. In most
cases, if the person no longer wishes to eat or drink, it
is because their digestive system is slowing down and
the energy in their body is being used for more vital
functions such as breathing. As the person stops taking
in fluids, good oral care can prevent and alleviate the
sensation of thirst, which is associated less with the
degree of hydration and more with mouth breathing
(Morita, Tei, Tsunoda, Inoue, & Chihara, 2001).
If the patient has increased confusion after ceasing
fluid intake or in cases of opioid toxicity, a trial of
intravenous hydration may be desired to see if it
relieves distressing symptoms (Lawlor, 2002).
Families may also ask about a trial of a feeding tube.

Families often have high, unrealistic expectations of
the benefits of tube feeding that do not correlate with
the clinical experience (Carey et al., 2006), especially
for the patient in the last hours of life. Because these
topics are highly emotional and often have spiritual
implications, it is important to respond to family ques-
tions about nutrition and hydration in an open and hon-
est manner. It may be helpful to consult with other
team members such as the medical director, chaplain,
nutritionist, or the ethics team if this is an especially
sensitive topic for a particular family.
Changes in excretion. As a result of decreased fluid
intake and the shutting down of the renal system, there
is often a decrease in the volume of urine and an
increased urine concentration in the final hours.
Urine may become very dark and tea colored. Families
should be prepared for these normal changes and it
should be explained that no treatment is necessary.
As control of the voluntary muscles relaxes, incon-
tinence of bowel and bladder may occur. If the patient
is conscious, this may be embarrassing to them. As the
nurse notes other changes that indicate that death is
nearing, it is helpful to pad the bed with a waterproof
pad, making sure that no plastic touches the patient’s
skin. Family members should be taught how to change
the pad while the patient remains in the bed. If the
patient or family desires, or if the patient has urine
retention, a urinary catheter may be inserted. A
catheter often makes care of the bed-bound patient eas-
ier, and some patients are comforted knowing that they
will not wet the bed.
Changes in communication. There are a number of
communication changes that take place in the final
hours to days of life. Some patients withdraw socially
and may only want a few friends or family members
present. Family members who are not part of this inner
circle often feel left out or unimportant and family
members who the patient wants nearby may feel bur-
dened and tied down. Supporting both sets of family
members includes reassuring those who are not in the
inner circle that their contribution to the dying
person’s life is important, but that their role now is to
honor the person’s wishes and support those who are at
the bedside. For those who the patient wants close,
help them divide chores so they are free to be with the
patient as much as possible and give them permission
to take time away from the bedside to sleep, shower, or
rest. It may be helpful for family members to realize
Kehl / CARING IN THE LAST HOURS OF LIFE 5
that withdrawal is a part of the grieving process on the
part of the dying person and not a personal rejection
(Periyakoil & Hallenbeck, 2002).
Another change is that communication often pro-
gresses from stories to paragraphs, to sentences, to sin-
gle words, and finally to moans or other nonverbal
communication. If families are aware of this progres-
sion, it gives them the opportunity to discuss patient
wishes while the patient is still able to respond. Most
patients follow this communication pattern, although
the time span may vary from minutes to weeks.
Although patients are still speaking, they may use
symbolic language or metaphors to describe their
experiences or communicate with their loved ones.
Families who are listening for symbolic language can
often understand cryptic statements made by the dying
person. Families who have an interest in learning more
about symbolic language often benefit from reading
Final Gifts (Callanan & Kelley, 1992).
Dying persons may also relate visions of things or
people, which cannot be seen by others. Families often
become concerned that their loved one is hallucinating.
Usually in hospice, if these visions or visits do not dis-
turb the patient, they are not treated. If the patient finds
the visions upsetting, pharmacological treatment with
haloperiodol is indicated.
CONCLUSION
Recognizing and managing the signs and symptoms of
approaching death is one of the greatest challenges and
most rewarding aspects of caring for patients who are
dying and their families. The role of the health care profes-
sional is primarily to guide the family through this experi-
ence so that they are confident of their loved one’s comfort
and their ability to care for them. Dame Cicely Saunders
(1999) has said, “How people die remains in the memories
of those who live on.” Providing good management of the
symptoms in the final hours and helpful explanations and
guidance to families increases the possibility that their
memories will be of a well managed, peaceful death.
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Karen A. Kehl, PhD, RN, ACHPN, has been a hospice nurse for
the past 14 years. In addition to experience in clinical practice in
hospice and palliative care, she has been a hospice educator and
administrator and has taught end-of-life care to undergraduate
and graduate students. Her current focus is research on preparing
families for death in the home setting.