Symptom Management Strategies
for Dying Patients
About this activity
This self-study
module is the second in a four-part series on nursing care of
the dying patient. The series is being developed by MNA, supported
in part by a grant from the Michigan Department of Community
Health. Additional modules will focus on grief and caring for
dying patients in the nursing home setting.
This module was developed for registered nurses; however, other
members of the health care team will find the information beneficial.
The experienced hospice nurse will find this module to be a
review of information he or she already possesses. The module
is not intended to provide comprehensive information on the
topic (a bibliography suggests additional resources), nor is
it intended as a nursing care course.
MNA is accredited as a provider of continuing education in nursing
by the American Nurses Credentialing Center Commission on Accreditation.
A certificate awarding 1.3 contact hours will be mailed to participants
who:
- Read
the entire article.
- Complete
the evaluation form and post-test, indicating responses on
the answer sheet.
- Complete
the registration form.
- Mail
the answer sheet and fee ($5/MNA member; $10/nonmember) to
MNA. Forms may be faxed if a credit card is used for payment.
Participants who achieve a minimum passing score of 70% (11
correct answers) will receive a certificate awarding 1.3 contact
hours. Certificates will be mailed within six weeks. Participants
who do not achieve a passing score will have the option to retake
the test at no additional cost.
Goal
The intent of this self-study module is to provide RNs with
information about the strategies commonly needed in caring for
patients who are actively dying.
Objectives
After completion of these self-study materials, the learner
will:
1. Describe nursing's moral imperative to ease the distressing
responses patients and their families may experience during
a patient's death.
2. Identify the most prevalent symptoms that occur in dying
patients, regardless of the cause of death.
3. Describe strategies to reduce or eliminate pain, dyspnea,
nausea, vomiting, fear, anxiety, and delirium.
"As sickness progresses towards death, measures to minimize
suffering should be intensified. Dying patients require palliative
care of an intensity that rivals even that of curative efforts…
even though aggressive curative techniques are no longer indicated,
professionals and families are still called upon to use intensive
measures - extreme responsibility, extraordinary sensitivity,
and heroic compassion."(Cassell, 1982).
Introduction
Dying is a momentous episode for the patient, but one that is
feared. Too many dying patients suffer needlessly at this special
time, not because of an absence of palliative care strategies,
but because many clinicians fail to provide them.(Solomon, O'Donnell,
& Jennings, 1993) Caring for the patient who is near death
poses challenges and provides immeasurable rewards for the clinician.
Death can occur at any age, at any time, from a myriad of conditions.
When death occurs suddenly from trauma or a myocardial infarction,
palliative care strategies for the patient will be irrelevant.
Other causes of death, such as some cancers or neuromuscular
diseases, are generally preceded by a fairly predictable, steady
decline with a forewarning of death and opportunities for life
closure and comprehensive palliative care. Some people will
experience a long course of chronic disease characterized by
exacerbations and remissions, as is seen with chronic lung disease
or congestive heart failure. Patients with chronic illnesses
may have a less clear or steady decline, compared to patients
with cancer that makes it more difficult to recognize the terminal
phase.
Regardless of the illness trajectory that brings the patient
to his or her "last days," careful attention to symptom
control will prevent, minimize, or eliminate distress, thus
improving the patient's quality of life until the time of death.
For the purpose of this self-study module, the dying patient
is one who is predicted to die within hours to weeks. Compassionate
care for patients with terminal illnesses and a duration of
survival that is predicted to be longer than days to weeks has
been well described elsewhere (Ferrell & Coyle, 2001; Hanks,
MacDonald, & Doyle, 1999; Kemp, 1999). Those sources are
recommended to learners who want to develop their knowledge
and skills beyond the introductory and general content included
here, which focuses on the patient who is near death.
Palliative care is the active total care of patients whose disease
is not responsive to curative treatment. Control of pain, of
other symptoms, and of psychological, social, and spiritual
problems is paramount. The goal of palliative care is achievement
of the best quality of life for patients and their families.
Many aspects of palliative care are also applicable earlier
in the course of the illness in conjunction with active treatment
(World Health Organization, 1990). Palliative care is not necessarily
restricted to patients who are dying; however, this module will
focus on the palliative care given at the end of life.
When the patient is recognized to be dying (see
Box 1), the most relevant clinical goal is to palliate symptoms
of distress.
Benefit vs. burden model
A benefit vs. burden model is useful in designing a palliative
care plan for dying patients. This is essential when the patient
has been experiencing cure-oriented care, since the routine
interventions for cure may in fact contribute to the patient's
discomfort (M.L. Campbell, 1998)
Imagine weighing the interventions on a scale; an intervention
should be minimized or discontinued if it causes discomfort
without producing a patient-relevant benefit. Any treatment
or intervention that is more burdensome, from the patient's
perspective, than beneficial, from a comfort-focused emphasis,
can be limited or eliminated.
For instance, venipunctures to monitor uremia and hyperkalemia
have no relevance for the patient with renal failure who is
no longer being dialyzed. Reducing the unpleasant symptoms associated
with uremia can be achieved by physical examination of the patient
without specific knowledge of the levels of the metabolic derangements.
A comprehensive assessment of the patient will reveal subjective
and objective responses and the impact of palliative care strategies.
Clinicians may overtreat dying patients because they have not
been trained in the clinical aspects of such care (Brody, Campbell,
Faber-Langendoen, & Ogle, 1997). Additionally, despite an
ethical and legal consensus regarding care at the end of life,
some clinicians may be reacting to misconceptions about morally
sound behaviors. Box 2 lists some common clinical-ethical misconceptions
about palliative care. For a discussion of legal misconceptions,
see (Meisel, Snyder, & Quill, 2000).
Ethical concerns regarding palliative care
Health care professionals are sometimes concerned about administering
analgesics and sedatives, especially opioids, to dying patients.
This is because of a belief that providing opioids to dying
patients might constitute a form of wrongful killing, since
it can lead to respiratory depression and hasten death (The
Hastings Center, 1987).
The relevant ethical principles in this type of dilemma are
beneficence and nonmaleficence. Beneficence refers to an obligation
to help others further their important and legitimate interests.
Nonmaleficence means to do no harm (Beauchamp & Childress,
1994). Relieving the patient's suffering is consistent with
the ethical principle of beneficence, to help the patient achieve
an important interest, that is, comfort. Yet the associated
risk of respiratory depression, which can be an adverse consequence
of analgesics and sedatives, may be a form of harm if one believes
that death is the ultimate harm to a human being.
However, there is some evidence that administering opioids in
amounts sufficient to provide adequate symptom relief may extend,
rather than shorten, life (Cohen et al., 1991). This is because
patients without distress are more likely to accept a greater
degree of nourishment, to be more active and less depressed,
and to be more open to other treatment possibilities. As a result,
they may live longer. There are no sound moral grounds for failing
to provide adequate relief from pain to those who are dying
and wish such relief(The Hastings Center, 1987). Furthermore,
there is growing evidence that the fears about opioids and respiratory
depression are exaggerated. That is, when opioids are prudently
titrated according to the patient's responses, respiratory depression
does not occur (M. L. Campbell, Bizek, & Thill, 1999; Citron
et al., 1984; Cohen et al., 1991; Wilson, Smedira, Fink, McDowell,
& Luce, 1992). Respiratory depression is a late sign of
overdosage and the patient will report or demonstrate symptom
relief first, may become sedated as a next response, followed
by respiratory depression.
Symptom prevalence
When we consider the various illnesses and injuries that cause
death, it is difficult to identify the specific symptoms most
prevalent in each illness, injury, or practice setting. Each
patient has an individual response to his or her illness and
eventual death. Thus, for this module the focus will be on the
symptoms that commonly accompany the dying process regardless
of the cause of the patient's death. These most prevalent symptoms
are listed in Box 3.
Pain
A reliable assessment of the patient's pain is the first step
in relieving it. Failure to assess pain is a key factor causing
undertreatment. Pain is a multidimensional symptom and requires
thorough assessment. In general, the nurse should understand
the patient's pain experience, including etiology, contributing
factors, intensity, and sources of comfort. Pain assessment
should occur at regular intervals. In every setting, assessment
of pain is the "fifth vital sign."
The International Association for the Study of Pain (IASP) defines
pain as "an unpleasant sensory or emotional experience
associated with actual or potential tissue damage or described
in terms of such damage (IASP Subcommittee on Taxonomy, 1980)."
Because pain is subjective, a plausible definition is "Pain
is whatever the experiencing person says it is, existing whenever
the experiencing person says it does (McCaffery & Pasero,
1999)." Pain is reported by 72% of all dying patients who
are able to describe their symptoms (Seale & Cartwright,
1994) and by nearly 75% of patients with advanced cancer (Jacox,
Carr, & Payne, 1994).
The conscious patient's subjective self-report of the presence
and degree of his or her pain focuses the treatment. Furthermore,
the conscious patient can establish the explicit goals of pain
management and maintain a level of control. Some patients will
endure more pain to avoid the side effects of some analgesics.
Other patients will seek complete pain relief even if mentation
is compromised. It is an important step in pain management to
determine with the patient his or her specific expectations
and goals about pain relief.
Impaired cognition that diminishes the ability to provide a
symptom distress self-report is highly prevalent in terminally
ill patients (Bruera et al., 1992; M. Campbell, unpublished;
Minagawa, Uchitomi, Yamawaki, & Ishitani, 1997; Pereira,
Hanson, & Bruera, 1997). For the patient with altered consciousness,
observation for indirect signs of distress, such as restlessness,
moaning, agitation, tachypnea, and tachycardia, guide the treatment.
These signs are presumed to represent pain, and although the
patient is unable to confirm the distress, there is no sound
rationale for withholding adequate analgesia/sedation in the
face of this presumed distress. The normal process of dying
does not alter the patient's pain perceptions; thus, the clinician
should maintain the analgesia regimen and titrate the dose for
obvious signs of discomfort such as when the patient is repositioned.
Using pain intensity scales translates the subjective experience
into a quantifiable description. Verbal descriptions may be
most meaningful for the sickest patients who cannot report using
a numerical scale. A 10-point scale provides a reliable means
of quantifying pain by many examiners over time. A visual analog
scale (VAS) allows the nonverbal patient to point to a number
or a position on a line. Figure 1 illustrates pain intensity
scales.
The prevalence of pain in dying children and neonates lacks
adequate documentation. Yet, there is a growing professional
consensus that children and infants do experience pain (Authors,
1998; Eland & Anderson, 1977; N.O. Hester, Foster, &
Kristensen, 1990; Kennedy-Caldwell, 1989; Maunukslea, Saarinen,
& Lahteenoja, 1990). With infants and children, one should
assume they have pain if an adult or older child would be experiencing
pain under similar circumstances.
Pain is whatever the child says it is, but many younger children
do not understand the meaning of the word "pain."
Nursing staff must therefore use words that children understand,
such as "hurt," "owie," or "boo-boo."
A number of different instruments have been developed to assess
children's pain. These include the following: OUCHER (Children's
Hospital of Michigan with Wayne State University College of
Nursing), Neonatal Infant Pain Scale© (Children's Hospital
of Eastern Ontario, 1989) for full-term infants, CRIES for preterm
infants (Krechel & Bildner, 1995), Wong-Baker FACES Pain
Rating Scale, Hester Poker Chips (Nancy O. Hester, 1986).
The chosen scale should be used consistently with the child
or adolescent. Nurses caring for neonates or children who are
unable to verbalize their pain or use a pain instrument must
rely on nonverbal cues. Box 4
lists nonverbal pain signs in neonates, infants, and young children.
For consistency across caregivers, the patient's pain score
and response to analgesia should be documented in a manner that
illustrates a trend, in the same way that vital signs are recorded.
Opioids are the most commonly used agents for terminal care
in adults, children, and neonates. Morphine in particular is
the most useful opioid to reduce pain or dyspnea since it is
widely available, well tolerated, and inexpensive, and can be
administered through a variety
of routes.
The intravenous route, when available, is preferred for rapid
onset of action, since subcutaneous and intramuscular absorption
can be compromised in the actively dying patient (Chernow, 1994).
The intravenous route is not always available in the home setting,
and subcutaneous, oral, and sublingual absorption of fast-acting
oral morphine may be helpful if the patient has sufficient consciousness
to swallow safely. Rectal and trans-dermal routes are also common
in the home; however, rapid titration is not possible with these
routes, which are characterized by slow absorption. Box
5 identifies the primary actions of morphine.
Morphine dosing has no upper limit. The dose is patient specific
and titrated to the patient's response.
Patients who are opioid naive can usually be made comfortable
with small doses. Prophylactic treatment of nausea should be
considered for patients who are unaccustomed to opioids. Nausea
generally disappears after the first 48 to 72 hours of opioid
analgesia. Itching is a common side effect of morphine and can
be reduced with the administration of diphenhydramine.
Patients who have been receiving opioids, particularly those
with cancer, may require high doses before comfort is achieved
while dying. The relevant dose is patient specific and will
require frequent assessment and titration to achieve. It is
not helpful to consider a usual range of morphine for pain control
in dying patients since the dose is patient specific. Each patient
will metabolize the opioid and experience side effects differently
according to his or her own underlying pathophysiology. The
patient's response is the relevant variable for assessing the
adequacy of pain management, not the amount of morphine administered.
Figure 2 illustrates dose
equivalents for opioid analgesics; the suggested doses are starting
doses only (Acute Pain Management Guideline Panel, 1992a, 1992b;
Jacox et al., 1994) Fentanyl is a useful, but more expensive,
substitute when the patient cannot tolerate morphine. Meperidine
is not recommended in any context, especially terminal care
due to the neurologic side effects and the inefficient analgesia
produced by this agent.
Some patients will experience neuropathic pain syndrome, which
does not respond well to opioids alone. Patients describe this
type of pain as burning, tingling, shooting, and intermittent.
There are many neuropathic adjuvant drugs including anticonvulsants,
antidepressants, and local anesthetics that are recommended
for neuropathic pain (Jacox et al., 1994).
Nonpharmacological interventions may be useful in addition to
pharmacological approaches to pain management. Controlling the
environment to reduce noise, bright lights, unpleasant odors,
and traffic is a useful consideration.
Complementary therapies, such as therapeutic touch, music therapy,
aromatherapy, relaxation, distraction, and imagery may have
roles in soothing the dying patient (S. O. Burke & Jerrett,
1989; Loscalzo & Jacobsen, 1990; Olson, Heater, & Becker,
1990; Porchet-Munro, 1993). Infants and young children can be
comforted by being rocked or swaddled. Offering feedings or
a pacifier may also soothe an infant. Some children find comfort
when surrounded by a special toy or blanket. The presence of
a parent or caregiver is important to children and enhances
their comfort.
Clinicians caring for dying patients also need to consider that
many routine nursing care interventions cause pain. Evaluating
the usefulness of these routine interventions and adjusting
or eliminating them will avoid causing the patient unnecessary
pain or discomfort (see Box 6)
(M.L. Campbell, 1998).
In spite of high-quality palliative care, some dying patients
will experience refractory distress. Contradictory results from
a number of studies of the frequency of uncontrolled symptoms
in dying patients report a range from 5% to 52% (Enck, 1991;
Fainsinger, Miller, Bruera, Hanson, & MacEachern, 1991;
Lichter & Hunt, 1990; Mount, 1990; Roy, 1991; Ventafridda,
Ripamonti, DeConno, Tamburini, & Cassileth, 1990)
Total sedation is a palliative care option for patients with
uncontrolled, persistent symptoms during which the patient is
sedated to unconsciousness through administration of escalated
doses of opioids, benzodiazepines, or barbiturates. All life-sustaining
therapies are withheld, and the patient generally dies within
hours to days after the initiation of the sedating agent (Byock,
1993; Cherney & Portnoy, 1994; Enck, 1992; Saunders &
Sykes, 1993; Truog, Berde, Mitchell, & Grier, 1992; Ventafridda
et al., 1990) (Fine, 2001).
This alternative is generally a "last resort" reserved
for those patients who have not achieved symptom control with
titrated administration of opioids and other analgesics and
adjuvant therapies (Quill, Lo, & Brock, 1997)
Dyspnea
Dyspnea is a patient's awareness of labored or difficult breathing
and his or her reaction to it (Janson-Bjerlkie, Carrieri, &
Hudes, 1986). Terms used by these patients include "short
of breath," "breathless," and "can't breathe."
Prevalence has been studied most often in patients with cancer
and dyspnea is reported by 32 to 79% of patients (Bruera, Schmitz,
Pither, Neumann, & Hanson, 2000; Claessens et al., 2000;
Curtis, Krech, & Walsh, 1991; Dudgeon, Kristjanson, Sloan,
& Lertzman, 1999; Fainsinger et al., 1991; Heyse-Moore,
Ross, & Mullee, 1991; Krech, Davis, Walsh, & et al.,
1992; Nelson, Meier, Oei, Nierman, & al., 2001; Reuben &
Mor, 1986).
The lowest prevalence of dyspnea was reported in critically
ill patients with cancer of whom 62% were being mechanically
ventilated thus less likely to experience dyspnea from pulmonary
derangements than cancer patients who are breathing spontaneously
(Nelson et al., 2001). The highest prevalence was found in patients
in their last day of life (Heyse-Moore et al., 1991) and in
those with lung cancer (Krech et al., 1992) .
Heart disease remains one of the leading causes of death in
the United States. Dyspnea was reported in 43% of patients who
died during hospitalization and 63% of patients who were in
the last three days of life (Levenson, McCarthy, Lynn, Davis,
& Phillips, 2000). Other investigators interviewed relatives
and friends of 600 patients who died from heart disease ten
months after the patient's death. Dyspnea was reported for 61%
of patients in the last year of life and 51% in the last week
(McCarthy, Lay, & Addington-Hall, 1996).
Patients with COPD, as expected, reported a high prevalence
of dyspnea that escalated as death approached. During an interval
of six to three months before death dyspnea was prevalent in
70% of patients sampled. Within the last three days before death
the incidence of dyspnea climbed to 82% (Claessens et al., 2000;
Lynn et al., 2000).
Dyspnea may be one of the worst symptoms a patient can experience.
Dyspnea is reported in a wide variety of clinical states, not
only diseases of the respiratory system. Box
7 lists the most common causes of dyspnea in patients with
a terminal disease.
As with pain, dyspnea is whatever the patient says it is. The
same tools used to measure pain have relevance for dyspnea.
Remember that the patient who is breathless or one who has an
artificial airway (tracheostomy) may not be able to provide
a verbal characterization of his or her dyspnea but can point
to a number or position on a line.
Some dying patients have altered consciousness, and the clinician
must be prepared to assess for objective signs of dyspnea using
observational techniques. Behavioral indicators for dyspnea
include tachypnea, tachycardia, restlessness, accessory muscle
use, grunting at end-expiration, nasal flaring, and flushing
or cyanosis (M. L. Campbell, 1996; M. L. Campbell et al., 1999;
Ferrell & Coyle, 2001; Hanks et al., 1999).
Nonpharmacological strategies
A number of nonpharmacological strategies may be effective in
reducing or eliminating the patient's terminal dyspnea. These
strategies include optimal positioning, oxygen, and balancing
rest with activity.
The simplest strategy to reduce terminal dyspnea is to identify
the patient's optimal position for respiratory comfort. For
most patients with terminal dyspnea, an upright position is
the most comfortable. This position maximizes vital cap-acity
by allowing the diaphragm to be dependent. In COPD, a forward-leaning
position with the arms supported on an overbed table is useful.
Supporting the patient's arms allows the chest wall and neck
muscles to be used for ventilation rather than to sustain arm
movement. Some patients will favor lying on one side over another,
which may reduce pain and terminal dyspnea. The obese patient,
or one with ascites, may not tolerate an upright position because
the abdomen compresses the diaphragm (M. L. Campbell, 1996).
Patients with decreased consciousness may not be able to identify
which position is most comfortable. The nurse will recognize
the patient's optimal position when there is a reduction in
the unpleasant responses that may accompany terminal dyspnea,
such as tachycardia, tachypnea, restlessness, and accessory
muscle use.
Oxygen may reduce terminal dyspnea caused by hypoxemia. It may
also serve a palliative function for patients who are not hypoxemic
but are anxious about death from suffocation and find the oxygen
to be a helpful security (Bruera, de Stoutz, Velasco-Leiva,
Schoeller, & Hanson, 1993; Pang, 1994) Conversely, oxygen
may cause the patient distress, especially if delivered by facemask.
It may make the patient feel suffocated or impair attempts to
communicate. The patient who pulls off the oxygen and resists
its replacement is demonstrating more distress from the intervention
than from the underlying hypoxemia. An evaluation of the individual
patient's response to the presence or absence of oxygen will
cue the clinician regarding its usefulness as a clinical strategy
for that individual
One study reported no difference between patient reports of
respiratory comfort in response to oxygen vs. air. Simple techniques
like an open window or a fan may be as therapeutic as the administration
of oxygen (Booth, Kelly, Cox, Adams, & Guz, 1996). Patients
with end-stage COPD may become hypercarbic while dying. However,
hypercarbia will not cause further distress because it produces
an opioid-like effect at levels greater than 80 mm Hg,(Taxen,
1994) which will augment the patient's comfort.
Patients with terminal dyspnea will require a balance between
rest and activity. Oxygen consumption increases with activity,
and the dyspneic patient's comfort will be compromised unless
there is an adequate period of recovery and rest after activity.
Many basic nursing interventions, which increase oxygen consumption,
strain the hypoxemic or dyspneic patient, even when the patient
is passive in the completion of these interventions. Care such
as bathing, linen changes, and positioning, although directed
at increasing patient comfort, must be evaluated with regard
to the effect on the patient's dyspnea. Some or all basic nursing
care strategies may need to be postponed, modified, or eliminated
if they exacerbate terminal dyspnea. For example, the patient
may need to be bathed gradually over several hours, rather than
provided with a complete bath and linen change all at once.
Assessment of the effect of nursing care on the patient's comfort
indicates whether the care is more burdensome than beneficial
(M. L. Campbell, 1996, 1998)
Pharmacological strategies
Medication is often very helpful as an adjunct to the nonpharmaco-logical
measures to reduce dyspnea. Categories of pharmacological agents
that may reduce terminal dyspnea include opioids, bronchodilators,
diuretics, and anxiolytics.
Opioids have been found to be very effective in reducing dyspnea
in dying patients (Bruera, MacEachern, Ripamonti, & Hanson,
1993; Farncombe & Chater, 1993; Farncombe, Chater, &
Gillin, 1994; Hsu, 1993) (Cohen et al., 1991) The dose is patient
specific and titrated to the patient's response in the same
manner as with pain management; remember that morphine has no
upper limit. Morphine can lead to bronchospasm in some patients
with dyspnea, but this is a rare occurrence and the bronchospasm
can be treated.
Bronchodilators and steroids reduce dyspnea associated with
bronchospasm, which is most often encountered in patients with
COPD. These agents can be given orally, intravenously, through
a hand-held metered-dose inhaler (MDI), and
via bronchodilators as a nebulized treatment.
Initiation of an oral bronchodilator is least preferred when
the patient is dying because of the delay in onset of action.
Chronic lung disease patients will have a negative response
to an abrupt cessation of systemic bronchodilators that they
have used for many months or years. Some patients may benefit
from a combination of routes and agents. The sympathetic effect
of bronchodilators may be detrimental if tremors, agitation,
and anxiety are produced, since these responses may heighten
dyspnea. The patient's response will dictate the use of bronchodilators.
Terminal dyspnea associated with heart failure or hypervolemia
can be reduced with the use of diuretics. Additionally, a reduction
in intake, except for that which the patient desires by mouth,
will contribute to respiratory comfort. Food and fluid administration
beyond the specific requests of patients plays a minimal role
in comfort and may contribute to other burdensome symptoms,
such as vomiting, peripheral edema, increased pulmonary secretions,
and dyspnea.
Anxiety occurs simultaneously with terminal dyspnea in many
patients. A short-acting anxiolytic agent will be useful as
an adjunct to the opioids.
Benzodiazepines may be given orally or intravenously to reduce
anxiety in a dying patient. Many COPD patients have been treated
with benzodiazepines chronically and have developed a tolerance
to the medication, which will lead to withdrawal and heightened
anxiety if the medication is discontinued. Phenothiazines have
also demonstrated effectiveness in reducing terminal anxiety.
Ventilator withdrawal
Mechanical ventilation has been used for decades to support
respiration in patients with acute or chronic respiratory failure.
Beginning with negative-pressure ventilation (iron lungs) during
the polio epidemic, clinicians had the means to prolong life.
Modern ventilators provide a variety of modes and mechanisms
for supporting even patients with the most severe pulmonary
impairments.
Ventilator withdrawal, when undertaken as a terminal care process,
should be a humane procedure based on scientific principles.
The comfort of the patient and the attendant family are the
principal concerns when this process is conducted.
Two distinct methods of ventilator withdrawal have been described:
terminal extubation and terminal weaning. Terminal extubation
entails the rapid cessation of mechanical ventilation and removal
of the artificial airway, followed in many cases by the administration
of humidified air or oxygen (Siegel & Ryder, 1996) Terminal
weaning is a step-wise reduction of ventilatory support, leaving
the artificial airway in place during the withdrawal of ventilation
(M. L. Campbell, 1993; M. L. Campbell & Carslon, 1992; Gilligan
& Raffin, 1995; Grenvik, 1983) Some of these patients have
their airways removed after the wean if airway comfort can be
predicted.
Ventilation is most often withdrawn when patients have a poor
prognosis for functional recovery after a neurologic event(M.
L. Campbell & Carslon, 1992; M. L. Campbell & Thill,
1996; Barbara J. Daly, Thomas, & Dyer, 1995; Faber-Langendoen
& Bartels, 1992)Most patients who are able to experience
distress require analgesia/sedation, and the drugs of choice
are opioids and benzodiazepines .(M. L. Campbell, 1993; M. L.
Campbell et al., 1999; M. L. Campbell & Carslon, 1992; B.J.
Daly, Nelson, Montenegro, & Langdon, 1993; Barbara J. Daly
et al., 1995; Faber-Langendoen & Bartels, 1992; Faber-Langendoen,
Spomer, & Ingbar, 1996; Smedira, Evans, Grais, & al.,
1990; Wilson et al., 1992) Patients who are brain dead will
require no analgesia, and the withdrawal of ventilation can
be rapidly completed using the terminal
extubation method. Some unconscious patients will not demonstrate
any signs of distress and will not require analgesia (M. L.
Campbell et al., 1999).
Before the process of withdrawal begins, decisions need to be
made regarding the time of day and whether the family chooses
to be present at the patient's bedside. Availability of personnel
to conduct the wean and support the patient and family will
determine the time of day.
The process of ventilator withdrawal consists of the following
steps, which are adapted to each patient. The first step is
evaluation of patient distress to judge the need for presedation.
Conscious patients will be able to participate in this decision.
Presedation should be recommended to the patient if it can be
anticipated that dyspnea will occur, for example, in cases of
cervical spinal cord injuries and apnea, and those with very
poor pulmonary function parameters. Brain-dead patients will
not require any sedation since distress is impossible. Patients
with coma and only brain stem activity may not show signs of
distress or need sedation.
The method for withdrawal needs to be determined. In brain death
this can be accomplished by turning off the ventilator and extubating
the patient. The family will need support if they remain at
the bedside. Patients with coma and only brain stem responses
and no presumed signs of distress before the wean can be placed
directly on a T-bar. All other patients, especially those who
are fully conscious, will benefit most from a terminal weaning
procedure in which ventilation and oxygen are withdrawn gradually
over several minutes to hours.
The patient's comfort during and after the wean needs frequent
evaluation. For those requiring analgesia/sedation, bolus dosing
of medication ensures the most rapid onset of action, followed
by initiation and adjustment of continuous infusions to maintain
comfort.
The last step to consider is extubation. The decision to extubate
should be a secondary decision following the choice about withdrawal
method. Airway problems can develop after extubation and are
sources of distress for the patient, family, and caregivers
(M. L. Campbell, 1993; M. L. Campbell & Carslon, 1992; Gilligan
& Raffin, 1995; Strother, 1991). The adequacy of the patient's
cough/gag reflexes, volume of pulmonary secretions, duration
of intubation, risk of postextubation stridor, and level of
consciousness are considered when determining whether extubation
should be performed.
Nausea and vomiting (Allan, 1993; Fallon, 1998; Mannix, 1998;
Twycross & Black, 1998) Nausea, retching, vomiting, and
anorexia are common complaints in cancer patients (40% to 70%)
and are reported by 33% of all patients who are dying (Seale
& Cartwright, 1994). Nausea is the unpleasant feeling of
needing to vomit and may be accompanied by pallor, cold sweat,
salivation, tachycardia, and diarrhea. Retching involves spasmodic
movements of the diaphragm and abdominal muscles that may lead
to vomiting. Vomiting is an involuntary reflux expulsion of
gastric contents through the mouth.
Eliminating or reducing the cause of the nausea and vomiting
(Box 8) is a first step in
controlling these unpleasant symptoms.
Forcing oral intake or using enteral nourishment, especially
in the actively dying patient who is losing gastric perfusion,
can exacerbate these symptoms. For patients who want to eat,
consider small, frequent meals according to the patient's preferences.
Generally, highly spiced foods or those with strong odors are
not well tolerated.
Nasogastric decompression and drainage may be indicated in cases
of complete bowel obstruction, but may be more burdensome than
the patient's occasional emesis when there are other causes.
Antiemetic drugs can generally reduce nausea and vomiting. Complementary
strategies, such as relaxation, imagery, music, and distraction,
may also be useful in reducing nausea
or vomiting.
Fear and anxiety
Attention to the patient's emotional responses warrants as much
time and effort as the physical responses, using a multidisciplinary
and multistrategy approach. Conscious patients who are facing
death may exhibit a variety of responses that are characteristic
of the individual, not the diagnosis, (Breitbart, Chochinov,
& Passik, 1998) although there are some metabolic (uremia,
hypercalcemia) or central nervous system changes that can produce
behavioral responses. Common responses include fear, anxiety,
and delirium.
Fear
Fear of dying is so universal that when a patient does not demonstrate
it, the clinician might be concerned about the patient's understanding
of his or her condition. Some patients reach their last days
without exhibiting fear, particularly when the burdens of the
terminal illness are severe, such that the patient's imminent
death is viewed by him or her with relief. Sometimes patients
report that they look forward to death and, if they believe
in an afterlife, to rejoining loved ones that preceded them.
Fear of death has two facets. One is the universal fear of nonexistence.
Children who are old enough worry about their parents going
on without them. The other is fear about the manner in which
death will occur.
The latter fear of pain or distress can more easily be reduced
through a comprehensive approach to minimizing symptoms. Fear
of nonexistence is more complex, and assessment of the patient's
social and
existential needs and counseling from a chaplain or clinical
social worker may be useful.
Anxiety
Anxiety is a common phenome-non in patients who are near death
and may result from physical or psychological causes (Box
9).
Conscious patients may use words like "edgy," "wired,"
"agitated," "restless," or "anxious"
to describe their anxiety. Patients who are unable to verbalize
their anxiety may demonstrate one or more of the following behaviors:
trembling, restlessness, sweating, tachycardia, tachypnea, trouble
swallowing, difficulty sleeping, and irritability (Breitbart
et al., 1998).
The treatment of anxiety depends on the cause and the patient's
responses. For example, anxiety associated with hypoxemia and
dyspnea will be reduced when the dyspnea is controlled to the
patient's satisfaction. Treatment of anxiety in dying patients
is accomplished through pharmacological and nonpharmacological
interventions.
Pharmacological agents
Benzodiazepines, phenothiazines, and neuroleptics are the most
commonly used drugs for reducing anxiety in dying patients.
The shorter-acting agents may be more useful for avoiding the
toxic accumulation that is more likely in the dying patient
with impaired metabolism. Midazolam is the most useful agent
if complete sedation, including amnesia, is desired; conversely
it will interfere with the patient's ability to communicate
and engage in life-closure tasks. (Breitbart et al., 1998)
Clinicians should not hesitate to provide needed sedation because
of fears of respiratory depression. Respiratory depression is
unlikely if short-acting agents are chosen in doses titrated
to the patient's responses. The patient should be monitored
for oversedation and drug doses and frequencies adjusted accordingly.
Nonpharmacological strategies
Relaxation, guided imagery, and music therapy may help to reduce
anxiety. However, relaxation and guided imagery require that
the
patient have sufficient ability to focus attention, and confusional
states and altered consciousness will interfere with this ability.
Music therapy may be therapeutic even for patients who are unconscious.
Clinicians and the attendant family can also benefit from soothing
music during this difficult, stressful time.
The soothing presence of a supportive person, usually a family
member, can also reduce a patient's anxiety. Patients may fear
being left alone because an untoward event could occur and they
might be too weak to seek assistance, or they may fear being
alone at the moment of death. Some patients won't verbalize
their need for someone to be with them, but the frequent use
of the
call bell or cries for "nurse" may be cues.
Eliminating visiting restrictions in institutions for dying
patients will facilitate the caring presence of family members
and friends. In the absence of family an aide, chaplain, volunteer,
or nurse may be able to stay with the patient to reduce fear
about being alone. Moving the patient to a room near the nursing
station where he or she can see the staff activity and be seen
may also be useful.
Delirium
Delirium is described as an etiologically nonspecific cognitive
disorder. Concurrent disturbances in level of consciousness,
attention, thinking, perception, memory, psychomotor behavior,
emotion, and the sleep-wake cycle characterize it. Delusions
and hallucinations are commonly seen. Delirium can be differentiated
from dementia by its acute or abrupt onset and reversible nature(Breitbart
et al., 1998)
This cognitive disorder is seen frequently in patients who are
dying from cancer and is a prelude to coma generally seen in
the last 24 to 48 hours (Bruera, Chadwick, Weinlick, & MacDonald,
1987; A. L. Burke, 1997) Agitated delirium has also been referred
to as "terminal restlessness." The condition is generally
worse at night, and the patient demonstrates more agitation
and disruptive behaviors at that time.
Causes of delirium include direct central nervous system changes
from tumor or metastasis, metabolic encephalopathies from organ
failure, dehydration, electrolyte imbalances from anorexia,
and medication adverse effects(Breitbart & Strout, 2000)
Although the cause may be known it may also be irreversible,
such as when caused by hepatorenal failure or multisystem organ
failure. Furthermore, attempts to reverse the cause may be more
burdensome to the patient than reducing the agitated delirium
with sedation.
Not all displays of delirium require treatment other than ensuring
the patient's safety from falls or self-harm. Some delirious
patients will be calm and report satisfying hallucinations.
Common hallucinations are of people who are not present or who
have already died, and the patient appears soothed rather than
frightened by these visions. If the delirium produces fear or
agitation, it may require treatment.
The same pharmacological strategies for anxiety are useful in
reducing agitated delirium. Some authors prefer the neuroleptic
drugs as the first choice because they are less sedating, followed
by the benzodiazepines if necessary.(Breitbart et al., 1998;
Breitbart & Strout, 2000)
Supportive, nonpharmacological measures are also helpful in
responding to the patient's delirium. The patient should be
treated with respect and courtesy, not restrained, reoriented,
and supported by family or staff in the room at all times. Avoiding
overstimulation of the patient may also be helpful, such as
by reducing lights and noise, especially when the patient is
hallucinatory.
Summary
When the patient is near death, a constellation of unpleasant
symptoms may characterize the experience regardless of the diagnosis.
The patient and family will experience a "bad death"
if the patient's distress is not alleviated.
When the patient is near death, the most relevant clinical goal
is to palliate symptoms of distress by identification and implementation
of relevant care strategies. A review of the entire therapeutic
plan, including routine interventions, needs to be done. Many
standing interventions can be sources of discomfort for the
dying patient, thus a comprehensive benefit vs. burden analysis
of the treatment regimen must be done.
Clinicians may overtreat dying patients because they have not
been trained in clinical aspects of such care. Effective strategies
exist to relieve distress from the most common complaints of
dying patients: pain, dyspnea, nausea/vomiting, fear, anxiety,
and delirium.
Bibliography
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