psychosocial issues affect patients

3
CHAPTER 1
The Psychosocial Impact of
Cancer on the Individual, Family,
and Society
LINDA M. GORMAN, RN, MN, APRN, BC, OCN®, CHPN
We are not ourselves when nature, being oppressed, commands the mind
to suffer with the body.
—William Shakespeare
It is now known that psychosocial issues affect patients in all stages of cancer.
Emotional response can infl uence both morbidity and mortality (Holland, 2002).
The increased emphasis on psychosocial oncology in recent years has led to more
research, education, and training programs as more professionals appreciate the
importance of this aspect of care. Psychosocial care of patients is needed in all phases
of the cancer experience. Holland (2003) identifi ed three factors contributing to
psychological adaptation: (a) type of cancer, (b) personal coping skills, and (c)
society’s prevailing attitudes toward cancer.
Diagnosis
The anxiety and uncertainty of a cancer diagnosis can create extreme disruption
in the life of almost any individual. A cancer diagnosis can create a threat to one’s
general sense of security and orderliness in life. Although the vast majority of cancers
are treatable, many people retain deep-seated fears that any cancer represents pain,
suffering, and death. Holland (2002) noted that no disease has sustained as strong
of a negative stigma as cancer. These fears can contribute to a person’s reaction to
a new cancer diagnosis. Whatever the type of cancer, people are faced with ongoing
uncertainty about their future as they deal with the potential for an unpredictable
course (Dankert et al., 2003). A cancer diagnosis leads to a complex set of issues,
including dealing with physical symptoms from the disease and treatment, facing
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
the existential dimension of the illness, and seeking a comforting philosophical,
spiritual, or religious belief structure or values that give meaning to life and death
(Holland, 2002).
Awareness
Prior to the diagnosis, the individual may be aware of body changes that could indicate cancer (e.g., a lump, abnormal bleeding). Nail (2001) called this the Recognition
Phase. This awareness creates a state of hyperalertness that eventually leads to action
in most people. How quickly this action occurs depends on many variables, including
past experience with cancer in oneself or one’s family. An experience with cancer
may encourage some to seek quick medical attention. The experience of others may
cause them to avoid medical attention because they are fearful of what the symptoms
could mean. Pain or discomfort created by the symptoms tends to motivate people to
seek medical attention (Mood, 1996). Other factors may contribute to delays, such
as feeling uncomfortable around healthcare providers, financial considerations, fear
of dependency, and fear of disfi gurement. Fear of cancer treatment may contribute
to an individual’s acknowledgment of symptoms. Family members with similar values
may inadvertently promote the same delaying behaviors that the patient is using.
Lack of knowledge about symptoms also may cause a delay.
Receiving the Cancer Diagnosis
In the United States, adherence to the ethical principle of autonomy has resulted
in physicians directly telling patients about the diagnosis of cancer. The principle
of autonomy dictates that the individual has the right to determine his or her own
course of action with a self-determined plan (Beauchamp & Childress, 2001). In
the healthcare fi eld, this means one has the right to know and participate in all
healthcare decisions. The original 1847 Code of Ethics of the American Medical
Association (cited in Katz, 1984) noted that a physician’s duty is to avoid all things
that could discourage or depress the spirit. This philosophy contributed to physicians receiving limited education in medical school about how to deliver bad news
(Girgis & Sanson-Fisher, 1995). In 1961, 90% of surveyed physicians preferred not
to directly tell patients about a cancer diagnosis (Oken, 1961). In 1977, more than
90% of physicians favored sharing such information with patients (Novack, Plumer,
& Smith, 1978). This dramatic change in practice reflected the social changes of
the 1960s and 1970s that resulted in an emphasis on openness. Access to oncology
specialists who had experience in sharing bad news became widely available during
that time. The development of research protocols emphasizing informed consent
was another factor (Holland, 2002).
At times, families still ask that patients not be told about the diagnosis. This creates
ethical dilemmas for healthcare providers about obtaining informed consent for treatment from their patients. Being pressured to use words like “growth” for the cancer
or “special medicine” for chemotherapy makes providing care to these patients more
difficult. Dunn, Patterson, and Butow (1993) noted that not being open about the
diagnosis still leads to patients suspecting it and thinking that the cancer must be so
horrible that even physicians or nurses will not acknowledge it. Avoiding the use of the
word “cancer” reinforces the fear associated with the word (Holland, 2002, 2003).
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Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
If physicians do not tell patients the diagnosis, a risk always exists that someone will
inadvertently share the information with the patient, causing the patient to greatly
distrust the healthcare team and family. Dunn et al. (1993) identifi ed the tendency of
healthcare professionals and family members to avoid patients who have not been told
the truth because of the fear of misspeaking. Openness about the diagnosis and prognosis enables patients to think more realistically about their condition and participate
actively in treatment planning. Most individuals are able to adjust to the diagnosis over
time (Dunn et al.). It is important to note that autonomy is not practiced worldwide.
Patients and families from other cultures may be unprepared to receive the diagnosis
directly. Healthcare professionals need to address the family’s fears about sharing the
news and offer suggestions for assisting the patient. Creating a balance between providing some information without alienating the patient and family can be difficult.
How one receives news of a cancer diagnosis is an important factor in how one
responds (Dias, Chabner, Lynch, & Penson, 2003; Rabow & McPhee, 1999; Tulsky,
1998). Figure 1-1 lists some helpful guidelines for sharing the news of a cancer diagnosis.
Healthcare professionals, including oncology nurses, need to develop skills in presenting information accurately yet gently, thus maintaining hope regardless of the prognosis.
Although nurses may not deliver the initial diagnosis, they often are in a position to
reinforce information, provide support, and consult with physicians about sharing the
news. Schofi eld et al. (2003) reported that patients experience less anxiety associated

Figure 1-1. Guidelines for Giving a Cancer Diagnosis
• Provide privacy and adequate time to share the information and provide support.
• Ask the patient how much he or she wants to know.
• Encourage the patient to bring a family member to the meeting.
• Consider taping the meeting or providing a written summary of the information.
• Monitor for signs of emotional distress and respond as needed.
• Give the information gradually rather than starting with the diagnosis.
• Listen to the patient’s and family’s concerns.
• Assess their understanding of what has been shared throughout the process.
• Develop an alliance with the patient about the treatment plan.
• If needed, ensure that professional interpreters are available.
• If the prognosis is very poor, avoid giving a defi nite time frame.
• Reinforce information given on subsequent visits and when the patient and family see other
healthcare professionals.
• Provide resources for follow-up support.
Note. Based on information from Buckman, 1992; Fried et al., 2003; Girgis & Sanson-Fisher, 1995;
Tulsky, 1998.

with the following communication style of how news is given: The physician prepares
the patient ahead of time for a possible cancer diagnosis, provides written information,
and openly discusses life expectancy and severity of the cancer; the patient has someone
with him or her when information is given; questions are addressed on the same day
as the initial discussion; and the patient is involved in treatment decisions.
The Patient’s Response to the Diagnosis
Whether a person anticipates the diagnosis, his or her initial response usually is
disbelief, numbness, and anxiety. Receiving a cancer diagnosis is associated with a
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
peak of negative mood and distress for many (Nail, 2001). Waves of intense emotions
similar to a grief reaction with periods of calmness are common. Generally, following
the initial days after receiving the diagnosis, most individuals are able to develop a
constructive plan of action. Healthcare professionals must remember that no matter
how compassionate and skilled the person is in giving the bad news, patients still may
experience extreme emotional reactions (Shell & Kirsch, 2001).
To integrate the idea of having cancer into one’s psyche, the patient may feel the
need to identify the cause. Asking “why me?” may be part of this process. Seeking
information about the type of cancer and its treatment can give the person some
sense of control. Information seeking is a more common coping mechanism in the
early stages of the disease, when the diagnosis is new and the patient is dealing with
a variety of new healthcare professionals (Nail, 2001).
Some individuals initially respond with denial. They cannot allow themselves to
think about what will happen if the treatment does not work or how this will affect the
family. Denial is a protective mechanism from this tremendous threat. It is a common
initial reaction to the overwhelming threat but generally decreases over time. Some
individuals are able to forestall any emotional reaction to the news as they research
the disease, consider treatment options, and interview physicians. This allows patients
to remain more focused on the decision making. However, an emotional reaction
can surface at any time.
In a landmark study, Weisman and Worden (1976–1977) examined 120 patients
in the fi rst 100 days after receiving a cancer diagnosis and described the extreme
distress commonly experienced in hearing the news. Intermittent periods of anxiety
and depression were common. Some of the factors they found that contributed
to poor overall psychosocial adaptation included having more physical symptoms,
perceiving the physician as being less helpful, having a psychiatric history, and
having a pessimistic view of the world. The most significant variables were a
perceived lack of a personal support system, having a more advanced illness, and
viewing the physician as being unsupportive. Lampic, Thurfjell, Bergh, Carlsson,
and Sjoden (2003) found that patients with a new diagnosis of breast cancer attributed signifi cantly more importance to closer and more positive relationships
with people in their lives.
As the patients return to their normal routine, some of the initial intense reactions
tend to decrease, with intermittent periods of increased intensity. Everyone needs to
view life as existentially meaningful, and cancer undermines this effort (Northouse
& Northouse, 1996). Weisman and Worden (1976–1977) found that within three
months of the diagnosis, most individuals began examining and reviewing their
lives, as well as looking for meaning in what was happening to them. This period of
intense existential analysis can be diffi cult and painful for patients and their families.
Patients may challenge long-held beliefs and values of the family and search for new
areas of meaningfulness that family members do not share.
Family Reactions
When cancer enters an individual’s life, it also enters the lives of family members
and close friends. Research clearly indicates that cancer enters the emotional, social,
physical, and spiritual well-being of patients and their family members (Northouse,
2005). It presents a major crisis for them as well as the patient (Glajchen, 2004). Walk
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Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
ing the illness journey with a loved one can contribute to many reactions, including
feelings of loss of control, disrupted family organization, and altered relationships
(Shell & Kirsch, 2001). They also noted that the initial uncertainty contributes to many
extremes in reactions. The initial response is similar to the patient’s: extreme distress
and disruption. A sense of vulnerability and awareness of the inability to protect a
loved one can lead to an intense sense of helplessness. Because family members and
patients often share common beliefs, the reactions of family members may parallel
those of patients (Lederberg, 1998). Denial or blaming others for the diagnosis may
occur in close family members as well. Family members may experience vulnerability
with the realization that this could happen to themselves.
Seeing a loved one vulnerable and fearful can create much distress, especially if
this is a big change from the patient’s normal personality. Family members often face
many role changes at the time of the cancer diagnosis. Disruptions in schedules and
taking on new roles of caregiving, meal preparation, and other family duties may put
a strain on some family members. Role changes can contribute to communication
problems if one is not sure of the usual routines or schedules. The financial demands
of treatment options can create concerns about the need to continue working. The
strain of feeling continuously “on duty” to provide physical and emotional support,
on top of dealing with their own fears, adds to the pressures of family members. They
also may need to conceal their own feelings and fears of what will be expected of
them in the future if the disease progresses.
Some family members may assume the role of cheerleader to remain upbeat and
encourage the patient to remain optimistic. This role can become very draining. It can
lead to resentment if one’s own needs are not being recognized or met. Resentment
can occur regarding the stress and inconvenience imposed on the family, as well as
past behaviors that they attribute to causing the cancer (e.g., smoking, high-stress
lifestyle) (Mood, 1996). Some members may take on additional roles, such as assisting with research and treatment decisions, if the patient is paralyzed by anxiety or
is too ill to participate.
Family members play a key role in the support system of most patients. How
to provide support to patients and best meet their needs may require a period of
trial and error. For example, patients may want to be more independent, whereas
family members may feel the need to be protective, leading to resentment and
increased stress on both sides. A lack of communication can lead to feeling that
one’s needs are going unrecognized and feelings of being smothered or isolated
from family life.
Spouses often feel devastated because they have not considered what life together with
illness would involve (Shell & Kirsch, 2001). A cancer diagnosis can bring couples closer
or can distance them as more stress is added to the relationship (Glajchen, 2004).
Life Span Considerations
The response of family members to the diagnosis of a childhood cancer often
is profound shock and disruption. Parents particularly are overwhelmed with the
realization of their child’s vulnerability to this disease. Parents may experience high
levels of anxiety as they try to protect their child from any distress. In addition to the
emotional distress, family members must face the disease-related demands that affect
the entire family. These can include fi nancial demands, transportation to multiple
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
medical visits, supporting other family members, and conducting research related
to the disease (Kristjanson & Ashcroft, 1994).
A child’s response to a cancer diagnosis in a family member depends on the
child’s developmental and cognitive level, as well as on how the parent responds
(Northouse, Cracchiolo-Caraway, & Appel, 1991). During the time of family disruption
caused by the diagnosis, the child may exhibit behavioral and adjustment problems
(e.g., problems with school attendance, sleep, aggression) in response to his or her
anxiety. Children need to become more adaptive to change at these times (King,
2003). Children must receive information about what is happening, but it must be
at a level that they can comprehend.
Cancer is increasingly more likely to occur as one ages (Jemal et al., 2005). Thus,
older adults are more at risk. The strain on an older couple, especially when one is
already frail, can be overwhelming. This can create an added burden for the patient
with cancer who wants to protect the other spouse. Financial demands as well as
limited support systems and problems with caregiving are other concerns.
Cancer Treatment
As the diagnostic phase is completed and treatment decisions are made, the patient
and family face new experiences that will affect them psychosocially. These include hospitalization, surgery, insertion of a central line, starting chemotherapy or other treatments,
and frequent doctor visits. An urgency often exists to begin treatment, and no matter
how much education the patient receives, he or she still may feel unprepared to enter
this unfamiliar world. Each type of treatment creates its own psychosocial impact.
Surgery
Surgery is the oldest form of cancer treatment (Jacobsen, Roth, & Holland, 1998).
Surgery alone as a cancer treatment may not be associated with the same negative
view as other treatments that are more closely aligned to cancer. Patients are more
familiar with surgery than other types of cancer treatments because surgery is routinely
performed for noncancerous conditions with positive outcomes. It is viewed as a way
to eliminate the cancer from one’s body. However, mastectomies, genital surgeries,
head and neck surgeries, and colostomies generally are associated with more distress
because of the obvious changes in appearance and body function (Jacobsen et al.).
For the individual who receives the news of the cancer diagnosis postoperatively, pain
and weakness from the surgery will add to the distress and depression created by the
new diagnosis. Borneman et al. (2003) found that caregivers for patients undergoing
palliative surgery experienced more intense psychological distress.
Chemotherapy
The public often views chemotherapy negatively. This may be based on irrational
fears, misperceptions, and inaccurate or outdated information (Knobf, 1998). Most
individuals have preconceived ideas about chemotherapy and its side effects. While
still reeling from the diagnosis, starting chemotherapy can intensify the sense of
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Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
vulnerability to one’s already weakened coping reserves. The protective equipment
worn by staff members who administer chemotherapy may add to this fear. However,
chemotherapy is an active treatment that can give patients a sense of strength as they
hope for a cure. Many patients are under the impression that chemotherapy must
be given through IV to be effective. However, many new oral agents with lower side
effect profi les are now available and can increase survival (Bedell, 2003).
Nausea and vomiting from chemotherapy tend to be major concerns for patients.
Education about the medications available to control these symptoms can address
these concerns. Alopecia has the emotional impact of being a constant reminder of
the diagnosis, forcing patients to immediately integrate the diagnosis into their lives. It
is a visible reminder to the world that a person has cancer, impeding the opportunity
to keep the diagnosis private (Freedman, 1994). Fatigue and risk for infection also
contribute to psychosocial distress.
Chemotherapy forces the patient and family to adhere to schedules of medical
appointments or hospitalizations and to reallocate family roles because the patient
usually cannot meet obligations because of fatigue or other side effects. Seeing the
patient in a vulnerable state while coping with the effects of chemotherapy may
increase the distress on family members who must watch their loved one suffer.
Fatigue and irritability experienced by the patient and family can increase the negative impact on the family system.
Radiation Therapy
People are taught to fear and avoid radiation. However, the patient then is told
that radiation is a treatment for the cancer. This dichotomy can create deep-seated
anxieties related to the cancer treatment (Greenberg, 1998). Radiation presents
many unknowns to the patient. Meeting a new physician and treatment team in
the radiation therapy department and lying alone on a table with a large machine
overhead can create a sense of isolation and anxiety. Fears about being burned
and having visible skin tattoos may contribute to one’s distress and create selfconsciousness. Patients may have heard myths concerning the side effects of this
therapy and need extensive education about what to expect. Patients with many
side effects from the radiation treatment experience more negative emotions and
intrusive negative thoughts about the cancer while receiving radiation therapy
than patients with fewer side effects (Walker, Nail, Larsen, Magill, & Schwartz,
1996). This emphasizes the need for ongoing education and assessment of the
effects of treatment.
The Patient’s and Family’s Response to Cancer Treatment
As the patient continues to receive chemotherapy, radiation therapy, or other
treatments (e.g., stem cell transplants, immunotherapy), the patient and family hope
for and seek a return to the former routines of their daily lives. Weeks and months
of disruption and emotional upheaval throughout the treatment process can create
a yearning for normalcy. Hilton (1996) found that families of patients with earlystage breast cancer achieved normalcy by viewing the cancer as “temporary” (with
a focus on the belief that it would be cured); de-emphasizing the illness by keeping
busy or adding distractions to their daily lives; maintaining flexibility in roles; and
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
de-emphasizing or minimizing the demands and changes brought on by the treatment.
The patient’s and family’s ability to return to usual patterns of activities is a way to
put the cancer behind them. Congruency between family members in regard to their
beliefs about the cancer also was important. This congruency made supporting each
other easier for family members. Hilton found that the negative perceptions that
patients or families retained about the cancer or its treatment affected their ability
to enhance normalization. The ability to view the cancer as a temporary, short-term
problem was extremely important in this process. Patients and families also face
burdens of shortened hospital stays with patients returning home with more care
needs (Holland, 2003) and the need for more involved home care and monitoring
(Rawl et al., 2002). Family members are therefore likely to take on the role of caregiver
(Given et al., 2004).
Nursing’s Role
Patients who are receiving a new diagnosis, starting treatment, and continuing
treatment are part of the daily practice of most oncology nurses. These patients and
their families are facing one of the biggest crises of their lives. The oncology nurse’s
role must incorporate an awareness of the tremendous psychosocial implications
that exist. Northouse and Northouse (1996) delineated the important interpersonal
roles of oncology nurses as imparting information, communicating hope, and dealing
with the many emotions that are part of the patient’s cancer experience. They viewed
the major issues confronting patients as maintaining a sense of control, obtaining
information, searching for meaning, and disclosing feelings.
Nurses play an important role in assisting patients in all of these areas. Although
nurses are not able to control the disease, they still can provide support in controlling
patients’ responses to the illness and education about the disease and its treatment.
Education will provide patients with the control necessary to deal with side effects and
will help them to make the best decisions. Providing education enhances emotional
support and fosters development of a trusting relationship with patients. Helping
patients to confront intense and confusing emotions is a key role for nurses and is
an important component of the nurse/patient relationship.
Recurrence
Because of the unpredictable nature of cancer, many individuals facing a diagnosis and initial treatment eventually must face recurrence. Recurrence is defined
as the return of the disease after an initial course of treatment with a disease-free
period. The disease may recur at the same site, recur near the site, or metastasize
to a distant site. The threat of recurrence is one of the reasons why cancer is such a
feared disease. Long-term survivors continue to experience distress over fear of recurrence (Gill et al., 2004). Although recurrence does not necessarily lead to terminal
illness, it certainly increases its likelihood (Mahon, 1991). Pasacreta, Minarik, and
Nield-Anderson (2001) noted that recurrence is a period characterized by increased
pessimism, renewed preoccupation with death, and disenchantment with the medical system. Frost et al. (2000) found that recurrence was associated with increased
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Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
uncertainty and symptom distress as well as less hope. It also means returning to
active treatment, which can bring back memories of past suffering (Glajchen, 1999).
At this time, patients not only face the realization that treatment has failed and cure
may be unattainable, but they must prepare themselves, as well as loved ones, for
the possibility of death. Dankert et al. (2003) reported that recurrence is one of the
main fears of people with cancer. Patients may face multiple recurrences during
their lifetimes; therefore, psychological response to recurrence remains a common
concern for patients, families, and healthcare professionals (Vickberg, 2001).
Psychosocial Response to Recurrence
Fear of recurrence continues after the initial diagnosis (Ferrell, Grant, Funk,
Otis-Green, & Garcia, 1998; Vickberg, 2001). If the cancer returns, it is a distinctly
different emotional event from the initial cancer diagnosis (Mahon, 1991). Although
recurrence entails different stressors and the need for different interventions, research
has not conclusively indicated that it is necessarily more stressful. Mahon, Cella, and
Donovan (1990) noted that the majority of patients in their study found recurrence
to be more upsetting than the initial diagnosis and that they were less hopeful than
they were at the time of the initial diagnosis. Sarna et al. (2005) found that women
with lung cancer had more distress over fears of recurrence and metastasis. Conversely,
Munkres, Oberst, and Hughes (1992) found no significant differences in mood scores
between patients with an initial cancer diagnosis and those with recurrence. Schulz et
al. (1995) reported similar results; however, financial problems, less social support, and
lower levels of optimism were associated with more psychological distress. Weisman and
Worden (1986) found that the degree of psychological distress at the time of recurrence
depended on the degree of symptomatology from the recurrence. Thirty percent of
their sample actually reported less distress with the recurrence. This group was less
surprised by the recurrence and had not let themselves believe they were cured. In fact,
for some, recurrence was a relief from the distressing uncertainty with which they had
been living as they waited for the disease to return (Holland, 1998). For these patients,
the uncertainty can be more distressing than the actual return of disease.
Psychosocial problems that emerged from the initial diagnosis and treatment
will resurface in recurrence (Holland, 1998). For example, a patient who initially
responded to the diagnosis with severe anxiety or serious depression could be expected to respond to news of recurrence in a similar way. This demonstrates the
need to obtain a thorough psychosocial history to assess the initial response. Initial
responses to recurrence typically include insomnia, restlessness, anxiety, and poor
concentration; however, depression and anxiety are the predominant responses.
Because these patients already have been through some type of cancer treatment,
preparing for treatment again may be more diffi cult because they know what to expect.
If patients had severe side effects with the initial treatment, they may need more
encouragement or more aggressive symptom management. Patients with recurrence
experience higher levels of symptom distress, particularly fatigue and pain (Mahon
& Casperson, 1995). These patients also may face decisions regarding more aggressive treatment, such as stem cell transplants, immunotherapy, and/or clinical trials.
These treatments may not have been considered the fi rst time around, thus creating
more unknowns (Pasacreta et al., 2001). In other cases, these therapies may have
been offered at the time of initial treatment, and the patient may have decided on a
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
more conservative approach. This can result in feelings of guilt or regret. Mahon et
al. (1990) found that 80% of the patients facing recurrence in their sample believed
they should have “fought the cancer more” following the initial diagnosis, and 50%
believed they should have sought more opinions or more treatment with the initial
diagnosis. This self-blame, anger, and guilt will contribute to patients’ negative
emotional responses.
The realization that treatment has failed can contribute to depression and a feeling
of hopelessness. The patients’ sense of hope may have provided the encouragement
needed the first time around when a cure was anticipated. The loss of hope may
contribute to the realization that one must consider the possibility of death. Holland (1998) described the existential crisis of recurrence as the individual having
to consider for the fi rst time that death could be the outcome and that one’s goals
may not be realized. Loss of confi dence, increased fearfulness, and hopelessness are
other reactions (Shell & Kirsch, 2001).
Loss of faith in the medical establishment may be a reaction as the individual
realizes the initial treatment did not provide a cure. This can contribute to anger
and consideration of alternative therapies or even to refusal of further therapy.
Some individuals may experience a sense of personal failure in thinking that they
have disappointed their physicians by not being cured. A sense of injustice, noted
by a comment such as “it is not fair because I did everything they asked of me,” can
create more anxiety, anger, and helplessness.
Recurrence may present fi nancial demands if the patient is considering aggressive
or experimental treatment. An inability to work, problems with insurance coverage,
and a need to relocate may contribute to this challenge and present additional stresses
for patients and families. Another fear may be that of facing a more physically disabling
illness as the disease progresses and treatment becomes more aggressive.
The Family’s Response to Recurrence
As with the patient, family members must struggle with depression, anger, guilt, and
the fear of death. Family members’ responses also may be similar to their response at
the time of initial diagnosis. However, the emotional climate of the family may be much
different at the time of recurrence, especially if many disease-free years have passed.
Changes in relationships caused by divorce or loss of family members may affect the
family’s emotional climate and the emotional support available for the patient.
Recurrence may create so much distress that family members and friends will
react with detachment because they fear reinvesting in the patient’s treatment
when the outcome may be less positive. This particularly may be common when
the patient experiences multiple remissions and exacerbations. The patient may
wish to have less contact with family members and friends because of depression
or fatigue (Mahon & Casperson, 1995). Maintaining a positive attitude may be
more diffi cult for family members and friends, and providing emotional support
to the patient could be more draining. On the other hand, family crises faced at
the time of initial diagnosis may have strengthened the family members to better
face this new challenge. Whereas in the past spouses or siblings may have thought
that they never could have coped with a loved one having cancer, getting through
the initial treatment may have given these individuals confi dence in their ability
to face whatever happens.
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Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
Weisman and Worden (1986) found that marriages that survived the challenges
of the initial diagnosis mobilized well for the stressors of recurrence. However, Lewis
and Deal (1995) found in their study that in 40% of couples facing recurrent breast
cancer, one or more of the partners experienced depression. Northouse et al. (2002)
reported that a family-based cancer care program resulted in more satisfaction and
optimism and less uncertainty.
The response of parents to recurrence in a child may be very diffi cult as they realize that a cure may not be possible. Facing the realization that the situation is out of
their control is particularly trying. Parents facing the news of recurrence have been
found to curb their immediate response to the bad news to maintain hopefulness
and to attempt to remain focused on curative therapy (Hinds et al., 1996).
Nursing’s Response to Recurrence
Identifying how a patient coped at the time of initial diagnosis is an important
early part of the treatment plan that may predict the patient’s response to the news
of recurrence. Knowing what physicians told patients also can provide important
information to gauge the response. Reinforcement of hope may help to maintain
emotional balance. Patients may fear abandonment by the healthcare team after
“failing” the fi rst-line treatment. Regardless of the treatment goal, physicians and
nurses must present a treatment plan that communicates a continued commitment
to patients.
Patients experiencing a recurrence will face many choices about treatment and
need information to help them to make decisions. Mahon et al. (1990) found that
90% of their sample reported that healthcare professionals assumed patients had
more knowledge about their disease and treatment than the patients felt they
actually had. Also, 75% of their sample reported that professionals assumed that
the patients were coping better than they actually were. This provides nurses with
important information regarding the need to take the time to talk with patients
about their coping as well as to reinforce teaching about the disease, treatment,
and side effects. Making important treatment decisions during a time of emotional
upheaval requires patients to have access to a variety of information at different
times. Written material may be helpful for patients to review after receiving oral
instructions. Access to alternative resources such as the Internet and cancer
information hot lines may be useful as patients seek more opinions about their
options.
Patients and family members need an opportunity to share fears in a safe environment. They may be reluctant to express their deepest fears to one another in order
to provide a measure of “protection.” The oncology nurse is in a key role to provide
this important outlet.
Terminal Illness
Patients must face terminal illness when 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
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
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’s work, and my body are
difficult to face, and they are diffi cult 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 to achieve a hoped-for goal. Other
questions can be acknowledged only in a supportive environment. Spiritual support
may provide some comfort.
Fear of pain and suffering: Pain is one of the most common and greatest fears for
those at the end of life (Ng & von Gunten, 1998). 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. The majority of people
with terminal illness can obtain relief (Paice & Fine, 2001). However, the patient may
need to be more sedated to obtain this relief in some cases (Panke, 2003). Unfortunately,
this fear becomes a reality for some patients when healthcare professionals provide
inadequate analgesia. Patients and their caregivers need to be educated about the options for pain control. Pain can produce feelings of guilt for patients who view pain as a
cause of suffering for their family. Other common symptoms that cause suffering include
dry mouth, shortness of breath, and lack of energy (McMillan & Small, 2002).
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 said, “There is nothing more I can do,”
which reinforces this fear. In most cases, physicians’ continued involvement 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). Because American society values self-reliance and independence, this
loss can be humiliating and provoke anxiety. Loss of control can induce feelings of
guilt because patients may feel uncomfortable relying on others and can maintain
a belief of needing to be strong. Others inadvertently can add to this fear by taking
over decision making and other responsibilities for patients out of a desire to help.
Advancing disease that treatment can no longer control represents a loss of patients’
power over the cancer. The act of stopping aggressive treatment may represent a
major loss of control as patients feel they are “giving in” to the cancer.
Copyright by Oncology Nursing Society. All rights reserved.
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Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
Encouraging the completion of advanced directives and estate planning to ensure
that personal wishes are known by others and will be followed can help patients to
maintain a sense of control. 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 self can be lost
as the patient can no longer maintain skills, interests, and relationships. Individuals’
abilities often defi ne 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 may
increase this fear. 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 supportive care measures.
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 anticipating separation and loneliness (Worden,
2000). 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. Recognizing the limited time one has to right wrongs with a loved one or
achieve forgiveness is a struggle for some. Borneman and Brown-Saltzman (2001)
defined forgiveness as letting go of expectations that one will be vindicated for pain
and loss. It can provide an opportunity for healing and possible reconciliation.
Loss of hope: Hope is a natural part of human existence. When hope for a cure
is no longer possible, individuals often are able to alter wishes for the future. Hope
can thrive in the presence of terminal illness even with the realization that cure is
no longer possible (Ersek, 2001). Patients may begin to hope for an easy death, to
resolve a confl ict with an estranged relative, or to believe one’s spouse will be prepared
to face life alone. To help patients to reframe hope by focusing on the present and
specifi cs, rather than vague uncertainties in the future, can be helpful.
The Family’s Fears
Loss of the 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 who lives with the family, the loss is more
intense. During the dying process, family members begin to realize what life will be
like as the patient weakens, is sleeping more, and is less a part of the daily routine.
The patient may turn more inward, and there can be less emotional contact for the
family (Davies, 2001). The approach of death may generate an awareness of losing
Copyright by Oncology Nursing Society. All rights reserved.
16
Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
a special relationship (e.g., a daughter 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 as
husband), or empathy and concern for others (e.g., the adult child who sees his or
her 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.
Although 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 the
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, with
anger often being 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 fi rst 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 may be facing loss of control in other areas of their lives as schedules are
disrupted, sleep is interrupted, and confl icts 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. Loved
ones may need to take on a more proactive role as decision makers as the patient
deteriorates (Zhang & Siminoff, 2003).
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 pain. Once it is experienced, depression, anger, preoccupation, irritability, and diffi culty 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 intensifi es. This may
be felt more strongly 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.
Family members also must recognize and help children in the family through their
grief regardless of age (Hames, 2003).
Fear of pain and suffering: Family members may anticipate that the patient will
have to endure much suffering during the dying process. This may cause them to
seek assistance related to dying, such as physician-assisted suicide or euthanasia. 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. Koop and Strang (2003) found that family
caregivers had improved bereavement outcomes when they felt they had accomplished
something valuable by providing comfort and caring for their loved one.
Copyright by Oncology Nursing Society. All rights reserved.
17
Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
The Role of the Oncology Nurse in End-of-Life Care
Cancer is now the leading cause of death in the United States for people younger
than 85 years of age (Jemal et al., 2005). Therefore, it is vital for oncology nurses in
all settings to be skillful in addressing the fears of patients and families when cancer
is progressing. As part of the interdisciplinary team, the oncology nurse often is a
leader in identifying palliative interventions and support needs for these patients.
Survivorship
Survivorship has become an important area of study for oncology professionals
(Dow, 2003; Holland, 2002). The National Coalition for Cancer Survivorship (2004)
defined a cancer survivor as “any individual that has been diagnosed with cancer, from
the time of discovery and for the balance of life.” Survivors comprise a significant
segment of society, but survivorship is a relatively new concept to oncology. With the
advances in treatment, people with a cancer diagnosis are now living longer, and
because of the aggressiveness of the treatment approaches, physical and psychological aftereffects are common. These changes have contributed to the development
of the concept of survivorship to encompass the phases and changes the individual
experiences after a cancer diagnosis (see Chapter 2).
Until the 1990s, relatively little research examined this period for patients with
cancer, particularly in regard to the psychosocial sequelae (Quigley, 1989). This may
be because of the assumption that quality of life returns to normal after treatment
(Ferrans, 1994). Leigh (1997) postulated that in the past it was thought that recovery
from a once-fatal illness was reward enough, so no need existed to study the quality of
survivors’ lives. However, growing evidence has suggested that the effects of treatment,
both physically and emotionally, remain long after therapy is completed (Dow, 2003).
Dow noted that the National Cancer Institute has identifi ed cancer survivorship as
a major area of research.
Survivorship is a dynamic, lifelong process (Pelusi, 1997) that is viewed as a continuum or ongoing role rather than an event that occurs at some designated point
in time (e.g., fi ve years). The perception of the quality of one’s life as a survivor may
change over time as new symptoms or treatment effects recede or increase or as one’s
coping abilities change. This defi nition not only includes people with no evidence of
disease but also those living with cancers not associated with cure or cancers controlled
by treatment but that periodically progress. Leigh (1997) noted that survivors also
are called victors, graduates, and veterans. These all are terms that connote power
rather than implying dependency (e.g., patient, victim).
Personal Growth for Cancer Survivors
Survivors often report positive outcomes, including a heightened sense of appreciation of family members and friends, feelings of being a better person for having
gone through this diffi cult experience, and the changing of priorities in life for the
better. Some studies of survivors have revealed an increased desire to be of service
to others, and many survivors volunteer to help other patients with cancer (Ferrans,
Copyright by Oncology Nursing Society. All rights reserved.
18
Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
1994; Pelusi, 1997; Wyatt, Kurtz, & Liken, 1993). Living through a life-threatening
cancer experience can increase one’s desire to move quickly to accomplish one’s goals
because of a heightened sense of the preciousness of life and how quickly it can be
altered. Others may make diffi cult decisions more easily (e.g., leaving a destructive
relationship, completing work toward a degree) because of a sense of urgency created
by having a potentially fatal illness.
Quality of Life for Cancer Survivors
The World Health Organization (1993) defi ned quality of life as individuals’
perceptions of their position in life in the context of the culture and value system
in which they live and in relation to their goals, standards, and concerns. Grant and
Dean (2003) identifi ed the domains of quality of life to include physical health, emotional state, level of independence, social relationships, environment, and spiritual
state. Initially included as part of clinical trials, the measurement of quality of life
in oncology now is being used to compare types of treatment, side effects, and the
consequences of cancer treatment. How each individual cancer survivor perceives
the effects of the cancer and its treatment on day-to-day life is a very personal experience. A person’s subjective perception and expectations create the actual quality of
life experienced. Coping with limitations such as lymphedema, chronic pain, sexual
dysfunction, and fears about the disease can greatly affect one’s perception of health
and satisfaction with his or her life. Individuals may make decisions about whether
to seek more aggressive treatment based not just on prolonging life but on the risk
of creating more of a burden related to their quality of life. Although grateful to be
alive, survivors may have difficulty adjusting to the trade-offs of survival, including the
long-term and potentially unknown late effects of the disease and treatment. Ferrell
et al. (1998) noted that breast cancer survivors continue to experience fatigue, pain,
fear of breast cancer recurrence, fear of breast cancer in female relatives, and the
stress of living with uncertainty and maintaining hope. Psychological well-being is
influenced by the ability to maintain a sense of control in the face of a potentially
life-threatening illness and can contribute to problems such as anxiety, mood swings,
and depression. Ferrell, Smith, Cullinane, and Melancon (2003) found that women
who survived ovarian cancer demonstrated resourcefulness and perseverance by
sharing coping mechanisms and survival strategies. Social well-being involves family
issues, including sexual and marital problems, adjustment of children, work-related
problems, and fi nancial concerns. Factors affecting spiritual well-being include the
ability to maintain hope and derive meaning from the cancer experience, which is
characterized by uncertainty. Any change in one domain will affect other domains.
For example, problems with fertility will affect the emotional, spiritual, and social
domains.
Cancer as a Chronic Illness
For survivors who experience advancing cancer or the ongoing effects of or disabilities from cancer and its treatment, survivorship may include the challenge of living
with a chronic illness. Nail (1997) noted that the public generally does not view cancer
as a chronic illness, so when cancer treatment is over, survivors are expected to move
on with their lives. Yet, because of long-term, late effects of the disease and treatment,
Copyright by Oncology Nursing Society. All rights reserved.
19
Chapter 1. The Psychosocial Impact of Cancer on the Individual, Family, and Society
survivors may have to continue dealing with the illness. Rather than being encouraged
to move on with their lives, survivors may need support in managing the chronic aspects
of the condition. Often, the support that patients received at the time of diagnosis and
treatment becomes less available once they enter extended survivorship.
The Oncology Nurse’s Role in Survivorship
In whatever setting a nurse works, cancer survivors will be part of the patient
population. Educating survivors and potential survivors about what to expect is a key
role for oncology nurses. “The individual’s experience with cancer and quality of
life is profoundly infl uenced by nursing care” (Ferrell, 1996, p. 915). In addition to
being educators about survivorship issues, oncology nurses need to consider sharing
knowledge about the impact of survivorship with nononcology nurse colleagues, who
will be the nurses more likely to see survivors after treatment.
Cancer survivors need information about the psychological changes that will
occur, the long-term physical effects of treatment, reentering the work world, the
financial impact of the disease, and the effect of the disease on the family. Preparing
the survivor for the anxiety that is associated with follow-up medical appointments,
self-monitoring of symptoms, the end of treatment, reactions when returning to work,
and anniversary-related emotions can provide important support and reassurance for
patients experiencing these feelings. Providing encouragement to continue medical
follow-up and support group involvement is another role for nurses. See Appendix
for resource information.
Family members and friends also need preparation and education about the
process of survivorship. Members of the patient’s support system may assume that
life will return to normal. Nurses need to encourage them to recognize that the
individual’s ongoing need to share his or her memories or feelings can be important
to recovery.
Recognizing the uniqueness of the cancer experience for each individual is an important element to remember when assessing survivors. Each individual will respond
differently to this process. Some may easily talk about it; others may avoid bringing
up the topic of cancer for fear of “jinxing” themselves, whereas others may become
anxious and depressed. Each individual interprets the disease and circumstances
around it to fi t his or her perception of the world.
Cancer survivorship has emerged as an important area for oncology professionals.
Professional organizations, including the Oncology Nursing Society and the American
Society of Clinical Oncology, have recognized and supported the needs of survivors.
The National Cancer Institute has established the Offi ce of Cancer Survivorship to
create more recognition of the issues faced after cancer treatment. The quality of
life of cancer survivors needs to be the focus of future research, and the oncology
nurse has a key role in this area.
Conclusion
A cancer diagnosis clearly has signifi cant physical effects on an individual—effects
that result from the disease itself and its treatment. Few other diseases, however, wreak
Copyright by Oncology Nursing Society. All rights reserved.
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Section I – The Psychosocial Impact of Cancer on the Individual, Family, and Society
the additional psychosocial havoc that cancer does. The psychosocial ramifications
are serious, long-lasting, and broad, and they affect not only individuals with cancer
but also their extended network of family, friends, and acquaintances. At every stage
along the cancer continuum, the care delivered must address physical aspects of the
illness in addition to the mental health and coping strengths of the patient and family.
Nurses are very much partners in this endeavor, taking their place beside physicians
and other allied healthcare providers. The oncology nursing specialist, as well as any
nurse caring for patients with cancer, cannot be effective without a respect for and
a command of a broad range of psychosocial nursing skills. In no other specialty is
nursing quite so instrumental in facilitating emotional care.
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