The psychological impact of advanced cancer and its management is directly influenced by the interactions among the degree of physical disability, the severity of symptoms, the internal resources of the patient, the level of social support, the intensity of the treatment, side effects and other adverse reactions, and the relationship with the healthcare team. The degree of physical distress placed on any individual and the inevitable drive to give meaning to the experience is the core from which the psychosocial concerns arise. At present, active support for aspects of palliative care is sporadic at best, especially in non-academic medical settings (15).

Adaptation to advancing disease begins with an appraisal of the extent of perceived harm, loss, threat, and challenge that this experience generates. In many respects, this appraisal is linked to the intensity and quality of the patient’s emotional response. Emotional regulation is at the core of coping and has significant implications for maintaining a sense of direction and control. Overall, this primary appraisal, efficiency of emotional regulation, and definition of the meaning of advanced cancer result in an assessment of the extent of the potential harm and threat, which then requires a secondary appraisal to be made. In this secondary level, patients must assess their personal (internal) and social (external) resources necessary to begin to address the demands and problems associated with advanced cancer. This process can be significantly influenced by the patient’s ability to maintain emotional regulation (16).

In addition, two salient continuums related to patient and family adaptation must be considered. The level of psychological distress forms the first continuum and the second consists of the predictable and transitional phases of the disease process. Patients with a preexisting high level of psychological distress can experience significant difficulty with any attempt to adapt to the stressors associated with a cancer diagnosis. Although most patients experience significant distress at the time of their diagnosis, most patients gradually adjust during the following 6 months (17). Evidence indicates that the best predictor of positive adaptation is the psychological state of the patient with cancer before the initiation of any therapeutic regimens (18). Although clinical experience would clearly indicate that the health system can influence the ability of patients and their families to adapt, literature to support this premise empirically is not available. Clinically, it is quite evident that hospitals do a very poor job at key (very common and entirely predictable) transition points in the care of seriously ill patients. But, there are now strong data that indicate palliative care for specific groups of cancer patients with advancing disease can extend both QOL and length of life (19).

Figure 50.1 details potential interventions along the disease and distress continuums. The level of psychological vulnerability also falls along a continuum from low to high distress and should guide this selection of interventions (20). In addition, problem-solving interventions have been demonstrated to reduce distress among patients with cancer as well as among family members (21,22). Prevalence studies demonstrate that one of every three newly diagnosed patients (regardless of prognosis) needs psychosocial or psychiatric intervention (23,24,25,26). As disease advances, a positive relationship exists between the increase in the occurrence and severity of physiologic symptoms and the patient’s level of emotional distress and overall QOL. For example, a study of 268 patients with cancer having recurrent disease observed that patients with higher symptomatology, greater financial concerns, and a pessimistic outlook experience higher levels of psychological distress and lower levels of general well-being (27).

In an effort to establish early identification of patients at high risk for poor adaptation, the National Comprehensive Cancer Network (NCCN) developed guidelines for the
management of psychological distress among cancer patients across the disease continuum. The NCCN described distress in a manner consistent with the focus and goals of palliative care, as an experience that can be psychological, social, or spiritual which interferes with one’s ability to manage or problem-solve in relation to the diagnosis, treatment, side effects, and symptoms associated with cancer (28). These guidelines provide a framework for the development and implementation of psychosocial interventions based on the perspectives of psychiatry, social work, psychology, nursing, and pastoral care. Psychosocial screening serves as the mechanism to identify patients at higher levels of risk in order to provide interventions at a much earlier point in time. These guidelines can be accessed at www.nccs.org.

If distress levels can be identified through techniques such as psychosocial screening, patients can then be introduced into supportive care systems earlier in the treatment or palliative care process. In fact, nationally and internationally, a number of investigators have successfully implemented robust biopsychosocial screening initiatives as part of the standard of clinical care in cancer setting (e.g., J. Zabora, M. Loscalzo, B. Bultz, and A. Mitchell). All of these screening programs use instruments that include psychological and physical symptoms, as well as social, spiritual, and practical concerns (28). Some of these programs use automated referrals or triages, provide educational information, and send clinical summary alerts to the physician and team during the clinical encounter (29). Of significant importance, the influential Institute of Medicine report in 2007, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, has endorsed biopsychosocial screening as the minimum standard of quality cancer care (30). Subsequently, the American College of Surgeons (ACoS) has established a new standard that requires screening for distress in ACoS accredited programs. In Canada, distress has been endorsed as the sixth vital sign (31).

Accordingly, any attempt to identify vulnerable patients and families in a prospective manner is worthwhile. Screening techniques are available through the use of standardized instruments that are able to prospectively identify patients and families that may be more vulnerable to the cancer experience (32,33). Preexisting psychosocial resources are critical in any predictive or screening process. In one approach, Weisman et al. (34) delineated key psychosocial variables in the format of a structured interview accompanied by a self-report measure (Table 50.1). However, in hospitals, clinics, or community agencies, which provide care to a high volume of patients and family members, a structured interview by a psychosocial provider is seldom feasible or even warranted. Consequently, brief and rapid methods of screening are necessary. Brief screening techniques that examine components of distress, such as anxiety or depression, can be incorporated into the routine clinical care of the patient. But only screening for psychiatric symptoms is not adequate. Just as cancer patients should not have to be dying to receive the full suite of palliative care services, patients and their families should not have to manifest psychiatric symptoms to receive psychosocial support. Early psychosocial interventions may be less stigmatizing to the patient, and more readily accepted by patients, families, and staff if screening identifies the management of distress as one component of comprehensive care (35). Screening is also a cost-effective technique for case identification in comparison to an assessment of all new patients (36). Although screening for distress and disease-related problems have received much attention recently, there are relatively few screening programs in place, even in comprehensive cancer centers (37). The City of Hope National Medical Center and NCI-designated Comprehensive Cancer Center in Duarte, California, is one of the few cancer programs that is screening patients with cancer for common problems and related distress. A fully automated touchscreen system (SupportScreen) has been in place since 2009 and has been licensed to a number of hospitals (29). SupportScreen provides an opportunity for the patients (and in some clinics family caregivers) to input their own information (in English and Spanish) relating to
immediate psychological and physical symptoms as well as social, spiritual, and practical concerns. Patients are able to indicate the degree of distress they are experiencing as well as the kind of assistance they are seeking from the healthcare team. Personalized educational sheets and resources are also provided, all in real time during the actual clinical encounter. The physician and healthcare team also automatically receive paper and electronic clinical alerts right before they meet with the patient. This technology has been very well received by physicians and staff, patients (of all adult ages), and family members. The experience at the City of Hope and other hospitals has demonstrated that patients prefer touchscreen technology to either paper and pencil and to a personal interviews and provide more personal information in this medium (38). The items on the screening instrument have also been tailored for individual clinics by medical specialty. The implications for the integration of palliative care into the standard of clinical care are of major importance. Many of the domains that relate to serious illness are emotionally laden and many physicians and healthcare providers lack the time, training, or inclination to open conversations that are essential to the psychological well-being of patients and their concerned family members. In this instance, it is quite evident that this technology and biopsychosocial content have the potential to transform the clinical encounter and the relationship between patients and their healthcare providers.

For each of the problems listed, a triage plan is in place and can be accessed during the clinical visit by the physician, nurse, or social worker. The social worker assesses the potential need for referrals to psychology and psychiatry. Not surprisingly, the 10 most common problems in rank order manifested by the first 300 patients with cancer at the City of Hope were fatigue (feeling tired), fear and worry about the future, finances, pain, feeling down, depressed or blue, being dependent on others, understanding my treatment options, sleeping, managing my emotions, and solving problems due to my illness. Of particular note, although pain was not the most frequently endorsed problem, it was the most emotionally distressing.

Standardized measures of psychological distress can differentiate patients into low, moderate, or high degrees of vulnerability. Patients with a low or moderate level of distress may benefit from a psychoeducational program, which can enhance adaptive capabilities and problem-solving skills; high distress patients possess more complex psychosocial needs that require brief therapy or family therapy along with psychotropic drug therapy for the patient. For some patients ongoing mental health services are essential, whereas other patients may require assistance only at critical transition points. Clinical practice suggests that virtually all patients could benefit from some type of psychosocial intervention at some point along the disease continuum, especially at the end of life. Psychosocial interventions include educational programs, support groups, cognitive-behavioral techniques, problem-solving therapy or education, and psychotherapy (39). To further facilitate the process of screening, the brief standardized instruments have been developed to create greater ease of administration and scoring and to develop gender-based norms (40,41).

The second continuum relates to the predictable phases of the disease process. This disease continuum extends from the point of diagnosis to cancer therapies and beyond. Across this continuum, patients acquire experiences, knowledge, and skills that enable them to respond to the demands of their disease. The needs of a newly diagnosed patient with intractable symptoms differ significantly from a patient who has advanced disease and no further options for curative treatments.

The patient and family may be supported throughout the illness process and the family requires continuing support following the death of the patient. At times families are overwhelmed by the illness and as a result are unable to effectively respond. For some families, a death may represent a major loss of the family’s identity and may paralyze the family’s coping and problem-solving responses. Failure to respond and solve problems leads to a lack of control and may generate a significant potential for a chronic grief reaction (42). Although the disease continuum consists of specific points, Table 50.2 identifies a series of predictable and relevant crisis events and psychosocial challenges that occur as patients and families confront advanced disease.

The circumplex model of family functioning, as developed by Olson et al. (43), categorizes families in a manner that explains the variation in their behavior. Although not specifically developed for cancer, this model conceptualizes families’ responses to stressful events based on two constructs: adaptability and cohesion. The end-of-life care simultaneously generates significant stressors for both patients and families, especially in issues related to power, structure, and role assignments. Adaptability reflects the capability of a family to reorganize internal roles, rules, and power structure in response to a significant stressor. Given the impact of advancing cancer on the total family unit, families must frequently reassign roles, alter rules for daily living, and revise long-held methods for problem solving. Dysfunction in the family can relate to either low adaptability (rigidity) or excessively high adaptability (chaotic). A family characterized as rigid in its adaptability persists in the use of coping behaviors, such as frequent manifestations of anger, even when they are ineffective. Those that exhibit high adaptability create a chaotic response within the power structure, roles, and rules of the family; such families lack structure in their responses and attempt different coping strategies with every new stress. Although most families are in the more functional category of “structured adaptability,” 30% are rigid or chaotic. These latter families are likely to exhibit problematic behaviors such as excessive demands of staff time or interference with the delivery of medical care that the healthcare team may find difficult to manage (44).

The second construct of Olson et al.—cohesion—is indicative of the family’s ability to provide adequate support (43). Cohesion is the level of emotional bonding that exists among family members and is also conceptualized on a continuum from low to high. Low cohesion (disengagement) suggests little or no connectedness among family members. A commitment to care for other family members is not evident, and, as a result, these families are frequently unavailable to the medical staff for support of the patient or for participation in the decision-making process. At the other extreme, high cohesion (enmeshment) blurs the boundaries among family members. This results in the perception by healthcare providers that some family members seem to be just as affected by the diagnosis or treatment or by each symptom, as the patient. Enmeshed families may demand excessive amounts of time from the healthcare team and be incapable of following simple medical directives. These families are not able to objectively receive and comprehend information that may be in the best interest of the patient. Also these families may assume a highly overprotective position in relation to the patient and may speak for the patient even when the patient’s self-expression could be encouraged.