Terminal Illness
Facing terminal illness most often occurs when patients realize that
aggressive, curative treatment is no longer an option and the focus
moves to palliative care. For some, this may come as a gradual awareness
that the disease is progressing
despite aggressive treatment. For others, this realization may be
sudden. Some may continue to pursue aggressive treatment until the end,
and others may reject treatment at the time of diagnosis. Still others
may face life-threatening complications during active treatment. However
the realization comes, it remains a difficult and emotional journey. At
this time, patients and families experience many fears.

Death is a threat with many common themes.
The Patient’s Fears
Fear of the unknown: Death is one of the strongest fears of all human
beings (Rando, 1984), and it presents the greatest “unknown” for many
people. Questions such as what will happen to my family, my life plans,
my life work, and my body
are difficult to face, and they are difficult questions for others such
as family members to hear. Some of these thoughts can be acknowledged by
talking about the concerns and making preparations to care for loved
ones or achieve a hoped-for
goal. Other questions only can be acknowledged in a supportive
environment.

Spiritual support may provide some comfort.
Fear of pain and suffering: For many people, this fear is greater than
the fear of death itself. Many individuals believe dying must mean
terrible pain, loss of dignity, and uncontrollable suffering. Patients
may have images of relatives screaming
in torment while dying of cancer. In fact, 75% of patients with advanced
cancer report at least moderate to severe pain that requires analgesics
(Bonica, 1990).
Unfortunately, this fear becomes a reality for some patients when
healthcare professionals provide inadequate analgesia. Interventions are
available to treat all types of pain (Foley, 1991), and patients need to
be educated about the options for pain control so that they can avoid
the fear of being in pain. Pain also can produce feelings of guilt for
patients who view pain as a cause of suffering for their family.

Fear of abandonment: As patients weaken and begin to lose some control,
the fear that others involved in the care may abandon them can be
intense. Patients may particularly fear abandonment by their physicians
when the focus of care
moves away from aggressive treatment. Physicians may have even said
“there is nothing more I can do,” which reinforces this fear. In most
cases, physicians remaining involved during the terminal stage is an
important part of supportive care.
Even when patients are under hospice care, attending physicians usually
remain actively involved. Individuals who feel helpless and anxious
around a dying patient may need encouragement to maintain their
involvement with the patient to alleviate the patient’s fears of being
left alone.

Loss of control: When advancing cancer causes progressive weakness,
fatigue, and confusion, patients have less opportunity to maintain
control of the environment and what is happening to them (American
Medical Association Council
on Scientific Affairs, 1996). Fatigue was found to be the primary
complaint for patients in the last four weeks of life (Coyle, Adelhardt,
Foley, & Portnoy, 1990).
Because our society values self-reliance and independence, this loss can
be humiliating and anxiety-provoking. Loss of control also can induce
feelings of guilt be-cause patients usually feel uncomfortable relying
on others and maintain a belief
of needing to be strong (Rando, 1984). Others inadvertently can add to
this fear by taking over decision making and other responsibilities for
patients out of a desire to help. The advancing disease itself, which
treatment can no longer control, represents a loss of control. The act
of giving up aggressive treatment also may represent a major loss of
control as patients feel they are “giving in” to the cancer.
Helping patients to maintain a sense of control can be enhanced by
encouraging
the completion of advanced directives and estate planning to ensure that
personal wishes are known by others and will be followed. Caregivers can
be sensitive to the urge to take over for patients when they are still
able to complete tasks.
Helping patients to conserve energy and establish priorities in order to
focus on things that are the most important can enhance a sense of
control.

Loss of identity: As the individual becomes weaker, more aspects of
oneself can be lost as skills, interests, and relationships can no
longer be maintained. Individuals’ abilities often define and affirm who
they are, and when this is lost, they can feel more distressed and
confused. Loss of dignity as patients become more dependent also may
increase this fear (Rando, 1984). Those patients with enough energy can
leave a legacy by making video or audio recordings, which helps them
to achieve a desired goal and enhances a sense of purpose and identity.
For others, maintaining their self-respect and dignity by acknowledging
their value as a person can address this fear.
Loss of body image/self: Valued physical traits may be lost as weakness
and emaciation occur. Patients may be less able to complete normally
important personal- care routines (e.g., shaving, applying makeup). An
individual may no longer be recognized as the same person by others.
This can cause patients to feel shame or that they are not lovable.
Maintaining patients’ dignity, respecting modesty, and assisting with
personal care are all important.

Loss of loved ones: Perhaps one of the most poignant fears that patients
encounter is facing the loss of relationships with loved ones. Just as
family members anticipate losing the patient, the patient too is
mourning the anticipation of
separation (Rando, 1984). For some people, the opportunity to
acknowledge the grief, complete unfinished business with important
people in their lives, and spend time with loved ones reminiscing about
past joys and sorrows all can be therapeutic to patients and family
members.

Loss of hope: Hope is a natural part of human existence (Rando, 1984).
When hope for a cure is no longer possible, individuals often are able
to alter wishes for the future. They may begin to hope for an easy
death, to resolve a conflict with an estranged relative, or to believe
one’s spouse will be prepared to face life alone. To help patients
reframe hope, focusing on the present and specifics rather than vague
uncertainties in the future, can be helpful.

The Family’s Fears
Loss of relationship: Anticipating the loss of the patient is the
beginning of the grieving process, which includes facing sadness,
struggling with anger, and anticipating life without this loved one. If
the dying person is part of a family
member’s everyday life, as with a spouse or parent, the loss is even
more intense. During the dying process, this family member begins to
realize what life will be like as the patient weakens, is sleeping more,
and is less a part of his or her daily
routine. The approach of death also may generate an awareness of losing
a special relationship (e.g., a daughter who is losing her father who
has always been her protector), loss of a part of oneself (e.g., losing
one’s wife means giving up a role ashusband), or empathy and concern for
others (e.g., the adult child who sees his or her remaining parent
anticipating facing life alone). As family members realize that they are
losing the relationship, they may fear that if the patient is too
sedated to interact, they will be faced with the loss more quickly. Even
though family members may want the patient to be comfortable, they may
try to keep him or her awake, out of fear of having to face the painful
realization of loss of the relationship. Helping family members to
acknowledge this fear and to reinforce the need to grieve this loss can
be helpful, along with reassuring them of the patient’s need to be
comfortable.

Loss of control: As with the patient, family members must face the loss
of control when they can do nothing to stop the disease. This can
generate many feelings; anger often is the most pronounced. As a way to
maintain some control,
this anger may be expressed to physicians for not doing enough for the
patient or to nurses whose actions are viewed as unhelpful (e.g., not
being able to restart an IV on the first try, not bringing a medication
immediately). For individuals who have never faced the death of a loved
one before, this can be a particularly difficult experience because the
sense of loss of control can be overwhelming. Helping family members to
face the losses, acknowledging their efforts to advocate for the
patient, and helping them to identify ways to maintain some control can
be useful interventions. Family members also may be facing loss of
control in other areas of their lives as schedules are disrupted, sleep
is interrupted, and conflicts arise with
relatives and friends—all perhaps occurring at the same time. Some
family members may need to maintain a job or child care while
simultaneously helping to care for a dying loved one.

Fear of sorrow: The growing realization of the impending loss may
generate intense emotions that are frightening to some individuals.
Family members may have used avoidance as a means of protection from
feeling this pain. Once it is
experienced, depression, anger, preoccupation, irritability, and
difficulty making decisions can occur. This is part of the grieving
process. As the patient grows more ill and eventually begins to withdraw
from day-to-day life, the reality of the impending loss intensifies.
This may be more strongly felt if the family member had protected
himself or herself by using denial or avoidance. Helping the family
member to be open to the grieving process and providing support and
acceptance
regardless of the reaction are very important. Fear of pain and
suffering: Family members may anticipate that the patient
will have to endure much suffering during the dying process. This even
may cause them to seek assistance related to dying, such as
physician-assisted suicide or euthanasia (see Chapter 35, pg. 427). The
thought of seeing their loved one suffer can
be so overwhelming that some individuals may act rashly to avoid even
the remotest possibility of this happening. Education of the family
about the dying process must begin early. This should include
encouraging family members to express their fears about what they think
will happen and then providing information to alleviate those fears.

Palliative Nursing Care
Twycross (1992) defined palliative care as the active total care of
patients and families by an interdisciplinary team when the expectation
is not cure and the primary aim of treatment is no longer to prolong
life. The goal of palliative care is
to assure the highest possible quality of life for the patient and
family. When the decision is made to discontinue curative therapy, the
patient may not be imminently terminal. Palliative interventions to
control bone metastasis, hypercalcemia, or uncomfortable symptoms (e.g.,
nausea, pain) can maintain the patient’s quality of life for months or
even years in some cases. When the prognosis is less than six months,
hospice care is needed. Palliative care always addresses patient comfort
and pain control. Pain is much broader than just a physical symptom.
Saunders (1967) coined the term “total pain” to incorporate physical,
emotional, social, and spiritual suffering, demonstrating the need to
involve other members of the healthcare team in patient assessment and
intervention.

Moving to palliative care marks a period of decision making for the
patient, family, and healthcare team. Examining the patient’s symptoms
to determine the level of discomfort and what interventions are
available needs to be a priority.
Decisions about life-sustaining interventions, including resuscitation
status and degree of aggressiveness in treating new symptoms or
complications (e.g., infections, renal failure), should be discussed.
The nurse is often in a key role to initiate
discussion of these issues with the patient, family, and physicians. See
Figure 1-2 for a summary of the nurse’s role in end-of-life care.
Ideally, the patient’s wishes about the goals of treatment clearly have
been expressed to the family and the physician to ease the process of
decision making when the patient no longer is able to speak for himself
or herself. Once this occurs,
someone must come forward to take on the role of decision maker.
Hopefully, the patient has designated someone. High (1988) found that
90% of patients name a

Decision making
• Advance directives/identifying surrogates
• Communication/advocacy of patient’s wishes
• Assessing patient’s capacity to make medical decisions
• Determining patient’s wishes for location of death
Treatment and symptom management
• Hospice care
• Palliative care
• Patient’s wishes for tolerance of discomfort
Life support
• Resuscitation status
• Ventilator support
• Other life-prolonging measures (e.g., artificial nutrition, hydration,
antibiotics)
Professional issues
• Standards of practice
• Agency policies
• Oncology Nursing Society (1995) Endorsement of the American Nurses
Association
Position Statements on Active Euthanasia and Assisted Suicide
• American Nurses Association (1991) Position Statement on Promotion of
Comfort
and Relief of Pain in Dying Patients
• Inter- and intraprofessional conflict
Figure 1-2. The Nurse’s Role in End-of-Life Care

Note. Based on information from Haisfield-Wolfe, 1996; Winters et al.,
1993. family member to make decisions when they are no longer able. If
no one has been named and the patient has not declared his or her wishes
to others, valuable time
can be lost as everyone involved struggles to determine the “right”
thing to do. Family members assuming the role of decision maker may be
called upon to consider stopping aggressive treatment. Family members
have reported feeling
excluded or even more burdened when the healthcare team postpones
discussions about withdrawing life-sustaining treatment (Tilden, Tolle,
Garland, & Nelson, 1995). Although many healthcare professionals feel
that dying patients often receive burdensome treatment, there can be
hesitation to address this issue (Solomon, O’Donnell, & Jennings, 1993).
A recent and widely discussed study (SUPPORT Principal Investigators,
1995) revealed that only 47% of physicians knew their patients’
preference to avoid resuscitation, 46% of “do not resuscitate” orders
were written within two days of death, and 50% of conscious patients who
died in the hospital reported having at least moderate pain 50% of the
time. This landmark study presented a sobering view of palliative care
and indicates the need for nurses to advocate for their patients’ wishes
much earlier in the treatment process.
As the patient nears death, the goal of achieving maximum comfort can be
reached. The Oncology Nursing Society (1995) noted that compassionate
end-oflife care should include attention to suffering, including
physical pain and existential
suffering, as well as the promotion of comfort. For nurses struggling
with helping patients, resources such as palliative-care teams, hospice
programs, painmanagement specialists, clinical nurse specialists,
clergy, and mental health professionals
are available and should be utilized. An awareness of ethical principles
and using available ethics resources also may help.
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