Adaptive Tasks In Living With Advanced Cancer

To date the psychologically relevant issues receiving the greatest attention in this population have been pain, fatigue, and depression (see special issue no. 32 of JNCI, 2004). The ramifications of AC likely extend well beyond these important concerns into a number of other diverse domains. As treatment advances have prolonged and improved the QOL of many people with metastatic disease, increased clinical and empirical attention has been directed to their psychosocial concerns. Of note, much

Adaptation in the Face of Advanced Cancer Table 1. Adaptive Tasks Faced by Individuals Living with Advanced Cancer

Physical and medical challenges

• Management of physical symptoms and side effects (e.g., pain, fatigue)

• Dealing with constant or changing treatment schedules

• Accepting stable disease as a desirable outcome of treatment

• Deciding to transition from curative to palliative care Psychological challenges

• Coping with uncertainty and unpredictability

• Fear of dependency

• Progressive losses in functional ability

• Maintenance of valued life goals

• Fear of death and suffering

• Balancing hope with realistic preparations for the future

• Management of complex emotions

• Unmet informational needs Interpersonal challenges

• Communicating with friends and family about illness and death

Social isolation and lack of emotional or instrumental support

• Concerns for loved ones

• Maintaining adequate communication with the medical treatment team Spiritual and existential challenges

• Making sense of and accepting the cancer diagnosis in the context of spiritual beliefs

• Finding meaning in one's life and death Practical concerns

• Knowing when and how to seek home help, transportation assistance, or other services

• Managing financial and legal affairs of the existing research has been conducted in Europe, Canada, or Australia, where the health care context is quite different from that of the United States. Most of the research outlining adaptive tasks is also qualitative and based on semi-structured interviews with convenience samples of patients. Drawing from this small research base and our own applied experience in this area, we discuss some of the myriad demands faced by individuals with AC. Table 1 displays a summary of these adaptive tasks.

Physical and medical demands. The most common physical challenges of AC are the management of physical symptoms and side effects of treatment, most frequently pain and fatigue. Fatigue and sleep disturbance are experienced by a majority of patients with advanced disease,5 and over half report pain at some point in the cancer trajectory.6 Fatigue is the symptom that patients report to be the most distressing and to interfere most with daily life,7 but pain and fatigue often co-occur. Both pain and fatigue can be side effects of therapeutic intervention or the result of the biologic effects of the cancer, and the prevalence of these symptoms is higher in palliative settings and during end-stage disease.7,8

Depending on the nature of the cancer, the sites of metastasis, and the treatments administered, physical symptoms might also include sexual dysfunction, incontinence, neuropathy, infertility, dyspnea, cognitive impairment, hair loss, constipation or diarrhea, nausea, loss of appetite, fractures, or itching.5 Controlling these symptoms can be centrally important to many patients' QOL,9 yet 63% of patients in one study described their symptom control as insufficient and ineffective.10 The experience of symptoms that result from the primary cancer might be distinct from negative side effects of treatment, and physical symptoms of metastases might be different still. Indeed, some patients with AC report that they become hypervigilant to signs of further metastases, interpreting every mysterious ache or memory lapse as an indication of advancing disease.9

Any difficulty in managing physical symptoms is of critical importance, as people with AC report that their perception of physical well-being powerfully affects their ability to feel meaningfully engaged with life and to maintain hope.9,11 Obviously, if someone is relentlessly nauseous, in pain, or crippled by fatigue, the goal of living well becomes secondary to ridding oneself of the symptom.

Among those with AC, constant treatment regimens can become burdensome. Depending on the status of their disease, people with AC may cycle through a series of different treatments and experimental drugs, such that they are constantly adapting to distinct side effects and schedules. The continuous nature of treatments and the need to adjust one's schedule to accommodate them may lead patients to feel dominated by their disease.12 In addition to undergoing treatments, people living with AC may have frequent appointments for tests and scans to determine whether treatments have been successful or whether the disease is progressing. These evaluations, as well as the subsequent period of waiting for results, may be accompanied by acute anxiety and distress.12 Due to the incurable nature of many ACs, patients may need to accept stable disease as a desirable outcome of treatment, a reality which often requires patients to disengage from goals of shrinking the tumor or eradicating the disease.

A related difficulty among those with AC is the transition from curative to palliative care, which may be accompanied by hopelessness, a sense of failure, or feeling that one has been abandoned by the medical team.13 A number of factors are implicated in the difficult decision to make this transition, including the recommendation of the oncologist, the preferences of the patient and his or her family, potential side effects of treatment, patient age, time since diagnosis, and other contextual life variables such as having children at home and holding particular spiritual beliefs.14-16 Though most patients prefer to be involved in this decision, greater patient participation in the decision to terminate or pursue additional curative treatment is associated with increased anxiety, at least temporarily.17 Failure of curative treatment may also lead patients with AC to experience self-blame or regret about their treatment decisions.18

Psychological demands. Individuals with AC often find that they must learn to cope with uncertainty and unpredictability.5,15 Granted, life is unpredictable regardless of whether one has been diagnosed with AC, but living with Stage IV disease harshly exposes this uncertainty. Patients with AC often report that they have "good days and bad days" characterized by great variability in their sense of physical and psychological well-being. These fluctuations may not be adequately captured by existing research designs, and as a result their disruptive impact on a patient's ability to plan for the future is not fully understood. The inability to predict how one will be feeling or to make social commitments or travel plans can be frustrating, restrictive, and isolating. For many patients with AC, the only solution to managing this unpredictability is to learn to make the most of good days (or hours) and to allow oneself flexibility on bad days.

Lack of control is another common complaint of adults living with AC,19 to which patients may adapt by staying abreast of their treatment and progress, refocusing their efforts at control on those things in life over which they actually have control, relinquishing control to their medical treatment team, or pursuing alternative therapies such as guided imagery which give them greater sense of control over their illness. Adopting an approach of living "one day at a time" can also help people with AC to feel more in control of the present and less anxious about the future.20

Another common psychological concern revolves around issues of dependency and autonomy. Patients often fear becoming helpless and unable to care for themselves, and anxieties about becoming a burden to loved ones are common.21 In one qualitative study, men with AC reported that their most important concern was being able to do things for themselves,9 and the progressive loss of one's ability to perform role functions or activities of daily living is often met with feelings of futility and worthlessness. Depending on the rigidity of existing dyadic or familial roles, these issues may become especially challenging. For example, a father or husband may resist being dependent on his child or wife if that challenges the existing dynamic, and asking for help from parents may be particularly difficult for a young adultjust establishing her independence. Rehabilitation for AC patients to preserve or recover functionality and prevent further decline has received little attention to date, although it may nourish hope and self-efficacy among this population.22 Patients may also need to learn how to ask for and accept help from friends and family, to reframe their expectations for themselves, and to prioritize activities so that they can devote energy and physical resources to doing those things that are most important to them.

A related task of adapting to AC involves the maintenance of short-term and long-term goals. People with AC find it important to preserve daily plans and projects in order to feel autonomous and engaged with life.9 Short-term goals can provide a structure that helps patients to maintain a sense of normality and routine,20 whereas long-term goals can foster a sense of hope, generativity, and purpose in life.

In addition to fears of dependency, individuals with AC face a number of other specific fears, including fear of the process of death, of suffering, and of being alone.5,15,23 Voogt and colleagues15 reported that 40% of a sample of 105 patients with advanced breast, lung, and other cancers experienced fear of death at times and that 15% feared suffering. Indeed, as Osse5 reported, patients' fear of pain can be more distressing than the pain itself. In working clinically with AC patients regarding death anxiety, it may be helpful to clarify the specific nature of an individual's fears of death, whether the underlying concern is a fear of unmanaged pain or suffering, of being alone when death comes, of leaving loved ones behind, or another specific concern.

The task of balancing hope with realistic preparations for the future is another critical undertaking faced by those with AC. For many patients, hope is dynamic and fragile, and the experience of "swinging, often in the same day, from hope to despair,"12 is common.11,12 Some patients describe this as "living while dying,"9 of planning for the worst-case scenario while hoping for the best. Clinicians may want to explore with patients the wide spectrum of hope and what specifically they are hoping for, whether it is a miracle cure, surviving long enough to attend certain special events, finding meaning in life, achieving an important goal, enjoying the remainder of one's life with friends and family, managing symptoms and remaining comfortable, or having a peaceful death.20

Living with AC involves the management of complex and intense emotions. In addition to fear and hope, these can include anger, despair, guilt, and shame.5,11

Whereas some patients experience high levels of negative emotion, a more common emotional experience might include feeling less positive emotion and pleasure in daily life.5,15 On the other hand, we have observed clinically that some individuals experience intense emotional blends of negative and positive emotions, such as poignant or bittersweet emotions accompanying the awareness that time with one's family is limited and precious.

Finally, patients with AC report many unmet informational needs, including the need for information about nutrition and complementary medicine as well as such sensitive topics as euthanasia, living wills, and hospice.15 Discomfort seeking or absorbing this sensitive information may result in heightened distress and fear of what is unknown as well as failure to adequately prepare for the inevitable.

Interpersonal demands. Communicating with family and friends about one's illness and death is a critical adaptive task faced by individuals with AC. Patients may have difficulty socializing with acquaintances and even close friends and family members, some of whom either dramatize or minimize the patient's situation.5 Some people may find attention to and questions about health undesirable and intrusive. Another common experience is the feeling that other people do not want to talk about one's illness and that inquiries after one's health reflect a sense of social obligation rather than genuine interest and concern. Although patients may recognize that this discomfort stems from fear or ignorance about how to be supportive, such interpersonal experiences can be frustrating and hurtful nevertheless.

Some patients may lack a confidant with whom to share emotions and fears and may not feel adequately supported or understood. Another social concern that is commonly reported by those with AC involves dealing with isolation and loneliness. This isolation can arise from feeling that others are not willing or able to be emotionally supportive, from the loss of role functioning and ability to work or socialize outside the home due to physical symptoms, from depression, or from feeling forsaken and disappointed by close friends or family members that one expected to be more supportive.5 For people diagnosed with rarer cancers for which there is limited public awareness, lack of contact with others who have personal experience with the disease can also be isolating.

Patients with AC commonly experience considerable worry and distress about how their loved ones will cope when they are gone. This fear may be particularly powerful if a patient has young children or others who are dependent on him or her or if the patient is unable to express these concerns freely or is unsure of how to broach the topic with children, spouses, or family members. Therefore, a family member or friend may need to initiate these conversations and provide reassurance that he or she is open to such dialogue. Acknowledging these issues when there is adequate time to write letters or prepare other keepsakes for loved ones may provide families with additional strategies for managing fears of loss.

Difficulties may arise within families if there are conflicting attitudes or degrees of openness about cancer. For example, if family members are not willing to acknowledge the severity of the disease and insist on remaining optimistic about "beating the disease," patients may feel pressure to protect their family from the reality of their fears and suffering. In other situations, caregivers feel protective and may request that prognostic information be withheld from the patient. Even if both are willing to acknowledge the serious nature of the illness, it is common for patients and caregivers to want to protect the other and to worry about how the other will handle conversations about end-of-life issues or about their own fears and emotions. Individuals with AC and their caregivers may also feel pressure to be positive and to enjoy their remaining time together and may be reluctant to engage in difficult conversations. Consequently, patients may not have an opportunity to talk openly with their loved ones about death and dying despite mutual recognition of the serious facts,24 a missed opportunity that some bereaved caregivers later regret. Clayton, Butow, and Tattersall25 recommend that health care practitioners be open and consistent in discussions with families coping with AC and have separate conversations with patients and caregivers if possible so that each can express his or her unique concerns and ask questions without worrying about the others' reaction.

These communication issues highlight another group of concerns unique to AC, as individuals with metastatic cancer may have different experiences of the medical system and interactions with practitioners than patients being treated for early-stage cancer. At the time of diagnosis and treatment decision-making, patients may feel intensely supported by their oncology team, but as time passes this intensity of care and attention can diminish. People with AC may feel as if their oncologists are disappointed in them when curative treatment fails. In addition, the need for ongoing treatment, especially experimental regimens or treatment in a large teaching hospital, may mean that patients are not followed by the same medical staff for the duration of their treatment. As a result, continuity of care may be compromised, and patients may have difficulty building trust and rapport with each new practitioner. Another potential consequence of a changing treatment team is that the patient might experience increased responsibility for communicating his or her needs, preferences, and medical history to the treatment staff, an experience which may be anxiety-provoking or frustrating.

Much literature has been devoted to issues around communication with physicians and patients' desire for prognostic information (e.g., refs. 25 and 26). There may be significant individual and cultural differences in preferences of the patient and family. For example, in some Korean families, caregivers believe that diagnostic and prognostic information should be withheld from patients.27 For the most part, however, research indicates that patients and families desire honest information about prognosis and treatment options and that they prefer that physicians balance truth telling with nurturing hope. Physician behaviors that encourage hope include being highly knowledgeable about the patient's cancer and indicating that pain and discomfort will be controlled, whereas acting anxious or uncomfortable, using euphemisms, or disclosing prognostic information to the family before the patient are viewed as detrimental to the patient's hope.26

Spiritual and existential concerns. For some patients with AC, religion and spirituality become important sources of comfort and social support.9 Some may feel that the suffering and pain they are enduring will lead to spiritual rewards and sanctification.23 Others may find their faith challenged by the diagnosis and may begin to question their belief system. For still others, religion and spirituality have never been important to them, and AC does not change this. Even if individuals with AC are not spiritual, many experience existential struggles as they strive to define the meaning of their life and make sense of their situation.11 The literature on spirituality in AC is quite limited, although many individuals indicate that these issues are of vital concern. Aspects of spirituality described as important to patients include being engaged usefully and feeling capable of helping others, maintaining confidence in one's religion, finding meaning in one's life and death, and accepting the disease.5

Practical concerns. Practical issues can be a source of tremendous stress and strain for patients with AC and their caregivers. For example, many struggle with deciding when home help is needed and finding and accepting this assistance. Nearly half of 100 caregivers assessed by a social worker were characterized as "needing additional assistance" such as skilled home nursing, medical equipment, or help with transportation.28 In one sample, professional help for activities of daily living was available but not always readily accepted, as the experience of having different nurses rotating through one's home to perform hygienic care and other intimate tasks was considered "degrading, humiliating, and intrusive."5 In this same sample, even when participants had home help, there was a universal concern that the home health aides might not be available when most needed, such as during the night or in case of an emergency.

Individuals with AC may also face a number of financial and legal issues. Because many people with metastatic cancer are unable to work, they may experience a decrease in household income at the same time that medical bills are mounting. In one study, inadequate medical insurance or ability to pay for medical care independently predicted psychological distress.3 Thus, financial strain for patients and families is another burden that must be managed. Another task that many patients with AC experience as important and distress-provoking is the need to get one's financial and legal affairs in order in the event of one's death.

To summarize, people living with AC may face diverse and simultaneous concerns that can seem overwhelming to the patient and support network and inadequately addressed by traditional oncology services. Increased awareness of these concerns by health care providers may result in more comprehensive and sufficient support during AC. Demands vary across individual patients and across the disease trajectory, so an individualized approach is warranted.

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