Living With Cancer: Psychosocial Implications

From WiserWiki

[edit] Living With Cancer: Psychosocial Implications

Debra M. Lundquist

Coping with cancer means more than coping with a chronic disease. It is coping with the human predicament. Cancer can be an exhausting, relentless, and resourceful foe.^[1]

The very thought of cancer is frightening to most people. The diagnosis of cancer is devastating and affects every aspect of the person's life. It is often the first time one confronts mortality, questioning life and its meaning. To many, cancer implies a death sentence; to others it implies suffering and pain. Despite advances in diagnosis and treatment, cancer remains a fatal disease for a significant number of patients.

Cancer is a heterogeneous group of diseases characterized by uncontrolled growth and spread of abnormal cells. Many cancers can be cured if detected and treated promptly. However, if the spread of disease is not controlled or checked, it results in death.

In the United States, cancer is the second leading cause of death and accounts for 23% of all deaths. There were approximately 1.23 million new cases diagnosed in 1998 with 565,000 deaths in the United States. For women ages 35 to 74, cancer is the leading cause of death. Cancer is the second leading cause of death for men in the United States.^[2]

In the early 1900s few cancer patients survived. By the 1940s only one patient in four was alive 5 years after diagnosis, and in the 1960s, it was one cancer patient in three. Today, there are more than 10 million living Americans who have a history of cancer. More than seven million persons were diagnosed 5 or more years ago. The 5-year survival rate is projected to reach 67% by the early twenty-first century.^[3][4]

[edit] TRANSITION POINTS ALONG THE CANCER TRAJECTORY (Box 121-1)

[edit] Meaning of a Cancer Diagnosis

The diagnosis of cancer elicits a wide range of emotions, including shock, disbelief, denial, anger, sadness, and depression. One may also experience feelings of powerlessness and vulnerability. It is a time of shock and disbelief for the individual as well as for that person's loved ones. Concerns about death and the feeling that time is running out are common. Many persons also experience a period of isolation and intense aloneness, but fear of dying creates an urgency to seek out information about treatment options and support from others. For most people, the reality of the situation is accepted, followed by feelings of anxiety, anorexia, irritability, and difficulty concentrating. It is common for patients to ask “Why me?” The person who is diagnosed with cancer finds the diagnosis is only the beginning of many life changes.^[5][6]

Cancer is regarded as a chronic illness that affects every aspect of a person's life. It is no longer regarded as an immediate death sentence, although there are many concerns about death. As with most chronic illnesses, periods of stress and feelings of uncertainty characterize cancer, whether it involves unpredictable disease trajectories, uncertain remissions, or recurrence of disease. According to Weisman, like cancer's ability to spread through the body, it also is able to spread into the emotional and social domains of an individual, causing disruptions in families and causing one to question the meaning of life.^[7] Weisman also identified uncertainty as a major coping problem.^[1]

A diagnosis of cancer is considered a catastrophic event that causes physical and psychologic changes to the individual and family. Weisman identified seven major areas of concern for these individuals: health, self-appraisal, work and finances, family and significant relationships, religion, friends and associates, and existential issues. Weisman identified coping with the problems associated with a cancer diagnosis as a major task of the individual and family. He described good coping as an action that consists of the principal parts of hope, trust, quality of survival, and reasonable control of symptoms.^[7][1]

Researchers have identified three general theoretic coping methods: active behavioral coping, which refers to behaviors directed toward the problem and its effects, including reliance on others for informational and emotional support; active cognitive coping, which involves one's thoughts, attitudes, and beliefs about the illness; and avoidance coping, which refers to attempts at actively avoiding the problem.^[6]

These behaviors can be further categorized into eight strategies that provide a framework for classifying coping reactions. The strategies can be identified as those that are effective in most situations and those that are less effective. The effective strategies include: active positive involvement (increasing involvement, living one day at a time); active expressive/information-seeking (talking with others to gain information or offer support); active reliance on others; cognitive positive understanding/create meaning; and distraction (doing something nice for oneself). The less effective strategies are: cognitive passive/ruminative (daydreaming); passive resignation (fearing the worst, not sharing feelings); and avoidance solitary/passive behavior (avoiding others, using drugs).^[6]

In general, those patients who demonstrate effective coping strategies report more positive affective states, higher levels of self-esteem, and fewer physical symptoms.^[6]

In a study done by Weisman and Worden, 120 newly diagnosed cancer patients were interviewed in 4-to 6-week intervals, beginning 10 days after diagnosis. The purpose of the study was to further explore the impact of a cancer diagnosis. This study examined how newly diagnosed cancer patients coped with the existential plight of being diagnosed with a life-threatening illness. Existential plight was defined as “a luckless predicament in which one's very existence seems endangered.” This study confirmed that newly diagnosed cancer patients are most concerned about dying regardless of their prognosis. These concerns occur most intensely during the first 100 days, the time known as existential plight.^[1]

This finding was supported by a study done by McCorkle and Quint-Benoliel. Their study revealed that newly diagnosed lung cancer patients experienced more health and existential concerns than those newly diagnosed with myocardial infarction. The cancer patients also experienced more mood disturbances than the myocardial infarction group. An interesting finding was that, although symptom distress remained the same for both groups at interviews done at 1 and 2 months after diagnosis, both groups of patients reported being less worried as well as in better spirits than at the first interview. This led to the inference that as patients understand more about their illness, they may conclude that their situation is not as life threatening as previously thought.^[8] Mood disturbances are not uncommon in the newly diagnosed cancer patient. Northouse interviewed women with breast cancer and found the level of mood changes improved over time, although the subjects' levels of distress did not.^[9]

[edit] Treatment-related Concerns

The initiation of treatment for cancer is a time characterized by fear, uncertainty, and feelings of loss of control. Patients realize that treatment is essential to combat the disease. However, fears related to the physical and psychologic aspects of the treatment as well as the impact on the family and financial ramifications can be overwhelming. Concerns about the physical aspects of treatment include potential side effects, changes in body image, and changes in functional status. Psychologic concerns include the fears related to the outcome of treatment, the uncertain future, and the ability of the individual to cope with the treatment. Feelings of uncertainty are paramount. Common questions asked by newly diagnosed patients with cancer include: How will I be affected by the treatment? Will the treatment help me? Will I be cured? and Is it really worth it? Many patients fear being a burden to their family and have concerns about their ability to maintain employment. Concerns about employment and the financial implications predominate, particularly if the individual with cancer is the provider for the family.

The treatment itself is a source of anxiety. Many individuals have misconceptions based on the public perception of cancer and its treatment. It is important to clarify misconceptions before initiating treatment. This knowledge helps the person regain a sense of control in a situation that causes many to feel out of control.

Patients also experience difficulties at the completion of treatment.^[5] For many, there is often a sense of ambivalence. Patients are happy at the thought of completing treatment but fear distancing themselves from the health care team. There is also a sense that they are no longer actively fighting the cancer. It is not unusual for some patients to develop behaviors such as hypochondriasis as a means of coping with anxiety about completing treatment. Reassurance about the availability of the health care team is encouraged, as is education about symptoms that would need to be reported. Routine checkups and yearly comprehensive examinations help alleviate anxiety. As the duration of time from the completion of treatment increases, patients become more comfortable with the distance that has developed from the health care team.

[edit] Cancer Recurrence

Cancer recurrence poses as great a threat as, if not greater than, the initial diagnosis of cancer. Many persons with cancer will experience one or more episodes of recurrence. Little is known about the psychosocial implications of recurrence. Mahon et al found the time of recurrence of cancer was more upsetting than the initial diagnosis and that people were less hopeful than at the time of initial diagnosis.^[10] Fear of recurrence is almost always present whether the prognosis is excellent or poor. A number of psychosocial stressors are experienced at the time of recurrence. For most patients the realization that the focus of treatment shifts from cure to control of disease is extremely stressful and frightening. Many patients perceive that, once treated, cancer is cured and will not recur. Therefore when the recurrence is confirmed, feelings of disbelief, uncertainty, anger, and fear are experienced. Many patients experience feelings of hopelessness and depression and question the benefit of additional treatment if cure is no longer the goal.

Mahon et al interviewed 20 subjects at the time of first recurrence to understand the meaning of recurrence and to explore the differences between the initial diagnosis of cancer and the diagnosis of recurrence. Five themes emerged concerning the interpretation of recurrence: issues before recurrence; the diagnosis of recurrence; prior experience with cancer; death and death-related issues; and positive aspects of recurrence. In regards to the differences between initial diagnosis and the diagnosis of recurrence, subjects identified that recurrence makes one more aware of the cancer diagnosis; treatment and extent of disease created feelings of fear because they had already been through treatment once and worried about side effects as well as effectiveness; and lastly, in patients where the extent of disease was unclear there was more anxiety and they felt more threatened.^[11][10]

[edit] Palliative Care

In addition, Mahon et al identified health and health-related concerns, work and financial issues, and self-appraisal issues. It is important to assess patients and families who are most vulnerable to the stressors that result from recurrence and provide support and guidance to facilitate adjustment.^[10] For many patients and families the opportunity to verbalize feelings of grief, anger, and fear enables them to move forward and make decisions regarding treatment and the future. Chekryn identified several stressors experienced at the time of recurrence by both patients and spouses (Box 121-2).^[12]

The transition from active treatment to supportive care of the dying patient is important in the cancer continuum. Palliative care is the shift in treatment goals from a curative intent to providing relief from suffering. Relief from suffering for the dying patient goes beyond the management of physical symptoms. The emotional, spiritual, and existential concerns must all be addressed.

Martinez and Wagner identified the principles of palliative care, as shown in Box 121-3.^[13]

When the decision is made to shift the focus to palliative care, persons experience many responses, often in a cyclic process. Initially, one may experience shock and denial at the realization that no further treatment will stop the cancer's spread. This is followed by varying degrees of denial, bargaining, sadness, anger, and acceptance.^[13] Coping patterns in the terminal phase can be predicted by the patient's history of coping with past events.

Many patients choose to die at home with hospice services (if available). Hospice care and death at home give the patient and family a sense of control over their environment at a time when they feel out of control. Remaining at home in familiar surroundings is also comforting for many people. However, this option is not feasible for all dying persons. Some patients may be too acutely ill to be managed at home. Lack of resources to provide adequate care in the home is another barrier.

For patients who choose to die at home, an individualized plan of care must be developed with the involvement of the patient and family. Information regarding the dying process, including anticipated signs and symptoms of approaching death, is important to best prepare the family to care for the dying patient. Anticipation of predictable changes in the patient who is dying can help the patient and family effectively cope. The major processes underlying cancer death include infection, organ failure, extensive carcinomatosis, pulmonary problems, myocardial infarction, and hemorrhage. Common symptoms include dyspnea, pain, altered elimination, and seizures.^[13] Assessment and care of the dying patient need to focus on the physical, psychosocial, and spiritual aspects of the individual. The focus shifts to maintaining comfort and managing symptoms to promote a peaceful death with dignity. See Chapters 9 and 164 for further discussion of death and dying.

[edit] Survivorship Issues

Early detection and intervention using a multimodality treatment approach have significantly increased the number of cancer survivors. Cancer is now considered a chronic, life-threatening illness rather than a terminal illness.

Cancer survivorship can be described as the experience of living through or beyond illness. It is a process that encompasses all phases of survival but is best defined as long-term survival.^[3] Historically, cancer survivors were considered cured of their disease 5 years after the completion of treatment. When thinking of cancer survivorship, the term cure is not accurate because some persons have cancers that may be controlled for several years. Although these individuals are not cured, they are indeed survivors with a chronic disease. Long-term survivors may experience a variety of problems ranging from minor, short-term difficulties to major psychosocial crises.

Mullan describes the three seasons of survival: diagnosis of cancer, a time dominated by treatment; extended survival, a period of waiting during which the patient fears recurrence; and permanent survival, in which the likelihood of recurrence is quite small and the disease appears cured.^[3]

The major psychosocial themes identified for cancer survivors include interrelationships between long-term physical effects and psychosocial outcomes, fears of relapse and death, dependence on health care providers, survivor guilt, uncertain sense of longevity, social adaptation dilemmas, and the effects on the family. The ability of a person to cope as a survivor of cancer is influenced by the degree of physical changes experienced relating to treatment. Certainly, fear of recurrence and death is present to some degree regardless of the time since initial diagnosis.^[3][14] This is probably the most common concern for cancer survivors. Dependence on health care providers is often the result of ambivalence that develops as the patient completes treatment. There is a sense of euphoria about completing treatment, which is in conflict with fears experienced relating to the change in intensity and frequency of interactions with health care providers.

Feelings of survivor guilt are common for cancer survivors. These feelings may be experienced on routine follow-up visits when there is interaction between the survivor and others in the waiting room.

Many cancer survivors experience a sense of uncertainty regarding the future. Concerns focus on the potential long-term implications after having survived a chronic illness. Many persons identify a greater appreciation of life and the desire to live life in a more meaningful way as positive approaches to this uncertainty.

An additional area of difficulty is the transition from the sick role to the healthy role. This is not always easy for cancer survivors. Welch-McCaffrey and co-workers identified the presence of physical disability, negative expectations from the support network, personal concerns about the ability to readjust, and social stigma as social dilemmas encountered by the cancer survivor.^[14] These are areas that require exploration and discussion. The ability of a member of the health care team to discuss these concerns may help the individual to look at them in a more objective manner.

Finally, the effects on the family of the survivor need to be considered. There is limited information regarding the effects of long-term psychologic stress on the family. However, this is an area of assessment that must not be minimized. The diagnosis of cancer affects not only the individual but also those around him or her. Throughout the diagnostic and treatment phases the family often struggles to respond and support the loved one with cancer. Health care professionals must be sensitive to the needs of families of survivors.

Additional areas of concern for the cancer survivor include financial, employment, and insurance issues. Access to insurance is usually through employment. Unfortunately, some cancer survivors experience discrimination in the workplace. Welch-McCaffrey and co-workers identified three categories of employment-related concerns: dismissal, demotion, and reduction or elimination of work-related benefits; problems resulting from co-workers' attitudes about cancer; and problems arising from attitudes of the survivor regarding how he or she should be perceived in the workplace.^[14] Federal and state laws were developed to prohibit discrimination against qualified individuals with a history of cancer. Both the Federal Rehabilitation Act of 1973 and the more recent Americans with Disabilities Act prohibit discrimination against cancer survivors in the workplace.

Access to comprehensive insurance continues to be problematic. The availability of adequate insurance is not a guarantee for many people. Unfortunately, there is no state or federally mandated legal right to health insurance, although this may change in the future. Barriers to obtaining insurance include refusal of new applications, waived or excluded preconditions, policy cancellations or reductions, higher premiums, and extended waiting periods. These barriers may also affect the spouse or family member who carries the insurance. Studies have found that 25% to 30% of cancer survivors experience some form of insurance discrimination.^[14] In an effort to protect survivors of cancer, the American Cancer Society published the Cancer Survivor's Bill of Rights. The goal of this document was to call public attention to the needs of the cancer survivor, to enhance cancer care, and to bring greater satisfaction to cancer survivors. Resources are becoming increasingly available to better support cancer survivors, on both the local and national levels. The National Coalition for Cancer Survivorship (NCCS) serves as a resource for those interested in issues of survivorship. The continued development of programs, support networks, and resources is essential to ensure that cancer survivors are treated fairly and maintain their quality of life.

[edit] COMPLEMENTARY AND ALTERNATIVE THERAPIES

The use of complementary and alternative therapies has been gaining more attention from patients over the last several years. Many patients choose to use these therapies in addition to conventional treatment; however, there is a growing number of patients who choose to discontinue conventional therapy and pursue complementary and alternative therapies. Cassileth reviewed 26 surveys of cancer patients from 13 countries, including five studies from the United States, and found the utilization of complementary and alternative therapy was 31%. The following therapies were used: herbs, homeopathy, hypnotherapy, imagery/visualization, meditation, megavitamins, relaxation, and spiritual healing. Across samples, the prevalence in the United States ranged from 7% to 16%, with the exception of one study that revealed a rate of 54%.^[15]

Patients who choose complementary therapies in addition to conventional treatment often do so due to some dissatisfaction with their treatment. The discomfort related to treatment is tolerated, but at the same time the patient may be drawn to the benefits of complementary therapies and feel more in control of their situation by taking a more active role. These therapies are usually self-managed, thus giving the person real control. Complementary therapies are used to reduce pain, stress, and anxiety, not to cure disease. The use of complementary therapies can enhance quality of life and feelings of well being.^[15] For additional information refer to Chapter 12 .

[edit] IMPACT OF CANCER ON THE FAMILY

Cancer is a disease that affects not only the patient, but also the entire family. One in four Americans will be diagnosed with cancer in his or her lifetime and two of every three families will have at least one member diagnosed with cancer. Some families may have multiple members of more than one generation being treated for cancer at the same time. It is essential that the health care team assesses the ability of the family to mobilize itself and its resources in response to the needs of the person with cancer. Acknowledgment of the importance of the family enhances the care of the person experiencing the disease.^[16][17]

Worry about the impact of the illness on loved ones is very real. The diagnosis of cancer places a strain on the entire family, and often the person experiencing the disease expresses feelings of guilt or worry because of what “I'm putting my family through.” This concern reinforces the need to include the family in the plan of care.

The major issues affecting the family and its ability to cope with a cancer diagnosis were identified by Woods, Lewis, and Ellison (Box 121-4). Whether the family can respond to these issues is related to disease characteristics such as the patient's age at diagnosis, prognosis, disease severity and progression, the duration of illness, and associated disabilities.^[18]

The location of the person in the cancer trajectory is an important point to consider. Morse and Fife studied the impact of cancer on the lives of partners of people with cancer at four different points in the cancer trajectory: diagnosis, first remission, first recurrence, and metastatic disease. They noted three significant findings: psychologic distress increases and adjustment becomes more difficult as patients progress through the disease trajectory. Other researchers who have found that adjustment to recurrence is more difficult than at the time of diagnosis also support this finding. The second finding is that female partners experienced more psychologic distress than male partners. This was believed to be related to financial concerns as well as women's dependence on their husbands. And lastly, social support correlated with the adjustment of partners, with family support most significant.^[19]

Families may remain at a transition point for an extended time or may progress quickly from one point to the next. The movement through these transition points serves as a reminder of the many changes experienced by the family that drain family strength and resources. Compounding this are the uncertainty and fear experienced at each transition point by the person with cancer and the family.

Family members may assume many different roles throughout the cancer experience. They may function in the role of partner, actively participating in decision making with the person with cancer and providing care to the ill family member. A family member fulfills the participant role by taking an active role in care and being included in decisions. However, the ill patient remains responsible for decision making. As an observer the family member does not participate in the care or decision making. It is important to identify who is functioning in the different roles to better care for the patient and family.^[16][18]

In a study of 41 family members of adult cancer patients, Welch identified five specific family needs when a family member has cancer. These are: knowing the patient is receiving excellent care, being informed about cancer and treatment, participating in patient care, communicating with the health care team, and participating in a support group.^[20]

Similar concerns of the family were identified by Wright and Dyck. The primary concerns of the family include dealing with symptoms, waiting, fear of the future, and obtaining information. Families of patients who had a recurrence had significantly higher needs. The highest priority of all families regardless of phase of illness was the need to be kept informed about the patient's condition and to be assured that the patient was comfortable.^[17]

Research in this field has identified three consistent findings: the family affects the patient's adjustment to cancer, family members do not necessarily share the same concerns about cancer, and family members cope with cancer in individual ways. Regardless of the person's phase of illness, care of the family is critical in caring for the person with cancer. In caring for the family, the needs of the individual with cancer are best met.

[edit] HEALTH CARE TEAM

Use of a multidisciplinary team is essential in helping the patient adapt to the many changes encountered as the result of a cancer diagnosis. Involvement of the team in planning care for the individual facilitates the restoration of physical and emotional well being as the members focus on the goal of promoting quality of life. In addition to the patient and family, members of the team include physicians, nurses, social workers, clergy, nutritionists, and physical therapists. When appropriate, other members are psychologists, occupational therapists, and other health care providers. Regular team meetings are essential to maximize care and identify potential obstacles of goal attainment.

The goals are individualized to the patient. To formulate realistic goals, a thorough discussion of the treatment plan, potential complications, and expected results is essential. For some the goal is curative, whereas for others it may be palliative. Regardless of the goal, maintaining quality of life underlies all interventions.

In addition to the resources available by the members of the team, knowledge of additional resources available is important in providing care. Community-based resources include support groups, educational groups, and organizations such as the American Cancer Society and the Leukemia Society of America, both of which offer programs and services to persons with cancer. Most major cities and towns have local chapters. Written publications are available. These materials are written for medical professionals and laypersons; they are free of charge and informative.

[edit] REFERENCES