4.13 Clinical psychology in palliative care

Psychological interventions can address a wide spectrum of objectives in palliative care and together aim to reduce psychosocial distress and maintain quality of life in patients and their caregivers. Some of these interventions help the patient and family cope with the fear of death and dying, manage anxiety, and reduce feelings of isolation, sadness, despair, and depression. These affective states closely interact with the physical symptom burden and often track with the deterioration of the illness. Other psychological approaches address problems associated with changes in relations and social roles, increasing dependency, the need to adjust to often impaired functional status, and existential concerns such as the search for meaning in life, hope, sense of dignity, grief, and spirituality. For the practitioner, the provision of psychological care as part of the palliative care team approach is characterized by high time demands, the need for flexibility and cultural competence, the ability to assist with decision-making, and facility with a variety of psychotherapeutic skills including the ability to support non-verbal communication (Irwin and von Gunten, 2010).

Recent clinical and research models of comprehensive patient care endorse the integration of palliative care early in the disease trajectory, during the period that disease-modifying and other life-prolonging therapies are actively pursued (Irwin and von Gunten, 2010). The palliative care continuum therefore includes acute illness, chronic illness, and end-of-life/hospice care, as well as bereavement care. This model subsumes the course of psychosocial distress in patients and caregivers, and underscores the significance of their supportive care needs.

The ability to cope with illness and adapt to the challenges it presents is influenced by the changing severity of stressors over time, psychological and psychosocial processes that mediate and modulate response, and the potential occurrence of comorbid disorders. During the trajectory of a life-threatening disease such as cancer, patients are confronted with a variety of biological and psychosocial stressors. Figure 4.13.1 illustrates a model of pathways of distress for cancer adapted from the work of Li et al., (2010). This model includes cancer and treatment-related stressors and psychosocial stressors, moderating individual and interpersonal factors, and a range of psychological and behavioural stress responses that have guided clinical psychological research in palliative care through recent years. According to the model, biological stressors arising from the disease and its multimodal treatments include pain and severe physical symptom distress, as well as neurobiological changes that are likely to influence psychological and behavioural stress responses and mental disorders (Li et al., 2010). Medical factors associated with psychological distress, particularly with increased anxiety, include metabolic conditions (e.g. hypo- and hypercalcaemia), neurological conditions (e.g. pain, central nervous system neoplasms), endocrine factors (e.g. hyper- and hypothyroidism), cardiovascular conditions (e.g. arrhythmia, cardiomyopathy), pulmonary conditions (e.g. hypoxia, pulmonary embolism, asthma), and medications (e.g. corticosteroids, bronchodilators, antibiotics, interferon, withdrawal states) (Breitbart et al., 1995; Pessin et al., 2008; Levin and Alici, 2010).

The psychosocial consequences of disease progression result in a range of challenges for both the patient and the caregiver. Advanced disease often is accompanied by functional impairments, dependency, and changes in appearance that can represent a threat to the sense of control, as well as the identity and the sense of dignity of a patient (Chochinov et al., 2009). Patients and caregivers also often face uncertainty and changes in relationships, attachment security, and social roles (Tan et al., 2005; Rodin et al., 2007). They simultaneously have to deal with the organization of care, difficult treatment decisions, changes in their life trajectory and life goals, and (anticipatory) loss and grief. Individual and interpersonal characteristics, such as age or education, life stage, personality patterns, coping strategies, family functioning, available and perceived social support, prior experience with illness and life crisis, and spiritual resources, can both influence and moderate the perception of stressors and the occurrence of psychosocial distress and mental disorders (Li et al., 2010).

In the context of advanced disease, physical symptom distress and psychological distress are closely interrelated. The continuum of psychological and behavioural stress responses consist of a wide range of emotional states experienced by patients and their caregivers. These include worry, anxiety, fear of death, feelings of helplessness, regret, shame, guilt or anger, sadness, demoralization, loss of meaning and hope, and (anticipatory) grief. A large body of evidence suggests that psychological distress can range from normal adaptive emotions through to higher levels of severe and clinically significant symptoms that fulfil standardized diagnostic criteria for an adjustment disorder, anxiety disorder, or depression (Ziegleret al. 2011). Some patients experience a loss of sense of dignity, suicidal thoughts and desire for hastened death, particularly during the end-of-life phase.

Adjustment disorder is defined as emotional and/or behavioural symptoms that are in excess of what would normally be expected from exposure to a given stressor (American Psychiatric Association, 2000). Adjustment disorders are characterized by a variety of clinically relevant emotional or behavioural symptoms arising from a specific stressful event such as the diagnosis or recurrence of a life-threatening illness. They are among the most common psychiatric diagnoses in oncology (Miovic and Block, 2007; Passik et al., 2008; Li et al., 2010). Frequent subtypes comprise adjustment disorder with depressed mood, anxiety or mixed anxiety and depressed mood. Prevalence rates for adjustment disorders range from 11% to 35% (Kugaya et al., 2000; Akechi et al., 2004; Kirsh et al., 2004; Miovic and Block, 2007; Mitchell et al., 2011).

A specific form of non-specific distress, the demoralization syndrome, has been described by de Figueiredo and Frank (de Figueiredo and Frank, 1982; de Figueiredo, 1993). The demoralization syndrome is characterized as a person’s inability to cope effectively with a stressful event and a loss of sense of mastery. Kissane et al. (2001) and Clarke and Kissane (2002) defined the demoralization syndrome as a clinically relevant syndrome of particular relevance for patients with severe and advanced physical illness, which is characterized by existential distress and despair, and could be diagnosed according to the following criteria: (a) affective symptoms of existential distress, including hopelessness or loss of meaning and purpose in life; (b) cognitive attitudes of pessimism, helplessness, sense of being trapped, personal failure; (c) absence of drive or motivation to cope differently; (d) associated features of social alienation or isolation and lack of support, and (e) allowing for fluctuation in emotional intensity, these phenomena persist across more than 2 weeks. Furthermore, a major depressive or other psychiatric disorder is not present as the primary condition (Kissane et al., 2001). Severe physical illnesses are particularly demoralizing due to their threat to the integrity of the body and the mind, as well as a person’s mastery and control (Clarke and Kissane, 2002). Given the frequency of illness-associated experiences of dependence, reduction of social roles and isolation in the face of an uncertain prognosis, populations with advanced illness are particularly vulnerable to stress responses generated from feelings of helplessness and hopelessness, despair and demoralization (Mullane et al., 2009; Mehnert et al., 2011; Vehling et al., 2012b).

Anxiety disorder is characterized by specific cognitive, affective and behavioural/physiological symptoms, such as excessive anxiety and worry, difficulties controlling the worry, difficulty concentrating, irritability, and shortness of breath or chest pain. Subtypes include generalized anxiety disorder, panic disorder, and post-traumatic stress disorder. Using clinical psychiatric interviews, an anxiety disorder was found in 6% to 14% in patients with advanced disease (Miovic and Block, 2007; Mitchell et al., 2011; Vehling et al., 2012a). Using screening measures, much higher prevalence rates of anxiety and significant anxiety symptoms—up to 48%—have been noted (Roth and Massie, 2007; Teunissen et al., 2007; Roy-Byrne et al., 2008; Delgado-Guay et al., 2009; Kolva et al., 2011). With progressive disease, higher symptom burden (e.g. nausea, pain, and dyspnoea), and the physical deterioration, the prevalence of anxiety increases (Delgado-Guay et al., 2009; Kolva et al., 2011). Maladaptive cognitions are also associated with increased anxiety. Patients with advanced disease facing death may be plagued by recurrent unpleasant thoughts, including fears of toxic treatments, pain, further disease progression, social isolation, dependency on others, and death (Roth and Massie, 2007; Passik et al., 2008; Levin and Alici, 2010).

Depressive disorder is characterized by specific core symptoms, namely a persistent depressed mood or loss of pleasure. Other symptoms are related to psychomotor changes, and both cognitive and somatic complaints. Depression is a common disorder. Surveys reveal overall rates of depressive symptomatology that range from 14% to 37% in populations with advanced disease (Massie, 2004; Miovic and Block, 2007; Pessin et al., 2008; Delgado-Guay et al., 2009; Wasteson et al., 2009; Lo et al., 2010; O’Connor et al., 2010; Mitchell et al., 2011; Mellor et al., 2013). In severely and terminally ill patients, the prevalence is higher, especially when the illness is associated with limited functionality, insecure attachments, and additional disease burden such as pain (Chochinov et al., 1994; Breitbart et al., 1995; Rodin et al., 2009). For example, depressive symptomatology was found in up to 77% among cancer patients, up to 82% among patients with AIDS, up to 71% among patients with chronic obstructive pulmonary disease, and up to 36% among patients with heart disease (Solano et al., 2006). Other risk factors for depressed mood include younger age, a family and individual history of depression, low perceived social supports, low optimism and low self-esteem, poorer social functioning and a history of stressful or traumatic life events (Miller and Massie, 2010).

Sadness is common and appropriate as part of a human grief response when confronted with terminal illness and the approaching of the end of live (Pessin et al., 2008). In practice, this normal response must be distinguished from clinical depression, which is an adverse condition that causes additional physical and psychosocial burden for these patients (Mellor et al., 2013).

Uncontrollable pain, depression, feelings of helplessness and hopelessness, delirium, high unrelieved physical symptom burden, low family support, and being a burden to others are major factors in the desire for hastened death (Hudson et al., 2006; Rodin et al., 2009; Breitbart et al., 2010; Rosenstein, 2011). Occasional thoughts of suicide in patients with advanced disease often represent an attempt to regain a sense of control in a situation experienced primarily as uncontrollable. Studies show that suicidal thoughts occur on average in 15% of patients with advanced cancer, with a wide range between 1.5% and 51% (Henderson and Ord, 1997; Druss and Pincus, 2000; Akechi et al., 2001, 2002, 2010; Rasic et al., 2008). However, few patients experience persistent suicidal thoughts and express the desire for hastened death, particularly in the pre-terminal and terminal stage of the disease.

Khan and colleagues have pointed out that the loss of the will to live in patients with advanced disease may arise from diverse processes, such as the acceptance of death, the lowering of mood, demoralization, or changes in important relationships with caregivers and health-care professionals (Khan et al., 2010). Hudson and colleagues found that the reasons for desire for hastened death were often multiple and complex, and categorized the associated processes as (a) an expression of feelings and current reactions to their circumstances, such as the loss of autonomy and the sense of dignity; (b) a communication of distress and suffering and/or a communication to explore options for relieving their distress; (c) seeking of information about suicide or euthanasia; and (d) specifically seeking health professional assistance with hastened death or acknowledging an intent for suicide (Hudson et al., 2006).

When patients express a desire for death or suicidal intent, the assessment of the suicide risk and the early administration of appropriate treatments, including psychiatric interventions, are critical. Breitbart (1990) and Pessin et al. (2008) have emphasized the importance of a careful and comprehensive evaluation of suicidal thoughts, plans, and current intentions using an empathetic approach. They recommend evaluating the patient’s understanding of his/her symptoms, and assessing the mental status, vulnerability, pain control, support system, recent losses, prior psychiatric history including alcohol and substance abuse, and prior suicide attempts and threats. The evaluation should clarify the need for observation and the formulation of a short-term and long-term treatment plan

It is important to pursue an integrated therapeutic approach when managing suicidal ideation in the palliative care setting. Given the associations between suicidal thoughts and emotional suffering from unrelieved pain and physical symptoms, feelings of being a burden to family and dependency on others, and the fear of impending death from advanced disease, one or more of these issues may require targeted interventions. The rapid and effective management of physical and psychological symptoms, for example, may quickly reduce distress and improve suicidal ideation in the majority of patients. Both pharmacological and psychosocial interventions may address depression, feelings of helplessness and hopelessness, demoralization, and loss of meaning in life. Efforts to sustain supportive relationships with caregivers and health professionals also can help patients to regain quality of life.

Psychosocial distress does not only affect patients. Interventions also may be needed to address the distress or disorders experienced by family, friends, and other caregivers. Patients with progressing disease and their caregivers both face the need to accept transition from an emphasis on disease-modifying therapy to an emphasis on palliative care alone. Particularly in the context of advanced illness or impending death, caregivers play an important and challenging role, providing emotional and social support for the patient, helping with medical needs, and meeting increasingly complex instrumental needs such as running the household and work. Furthermore, caregivers may be called upon to assist professionals in making difficult treatment decisions, and these occurrences may be experienced as highly stressful (Huang et al., 2012). When treatments have uncertain benefits and burdens, or the goals of care are ill-defined, conflict may erupt between the patient and caregivers, or between caregivers and health-care providers. Many studies have observed associations between high levels of emotional distress in caregivers, or anticipatory grief, and signs of clinical instability, sudden health changes, or end-stage disease in patients; distress also is magnified when patients experience depression or progressive cognitive impairment. During bereavement, support offers for caregivers include supportive counselling, psychodynamic and interpersonal psychotherapies, cognitive behavioural therapy (CBT), and family therapy (Lichtenthal et al., 2010).

The assessment of psychological distress and diagnosis of mental disorders pose a range of clinical challenges in populations with serious or life-threatening illness. Given the complex medical issues and treatment interactions, the aetiology of both physical and psychological symptoms often remains unclear. In some patients, elevated levels of psychological distress or a mental disorder represent premorbid conditions that have continued or worsened with onset and progression of the medical illness. In the much larger proportion of patients, psychological distress represents a response to the life-threatening disease, the deterioration of their health, and the multimodal medical treatments (Kelly et al., 2006).

A relatively small proportion of patients with psychosocial distress or a mental disorder are identified by the health-care team early and referred to receive psychosocial support (Passik et al., 1998; Fallowfield et al., 2001; Kelly et al., 2006). Recommendations are needed to improve the opportunity for early intervention. To some extent these recommendations focus on the interpretation of selected symptoms in the context of advanced illness. It often remains unclear whether a particular symptom, such as difficulty concentrating or weight loss, is a consequence of a treatment such as chemotherapy, or a symptom of a mental disorder such as depression. Many authors recommend that the psychiatric and psychosocial assessment focus on cognitive and psychological symptoms, such as hopelessness or guilt, rather than on somatic symptoms (Passik et al., 2000; Pessin et al., 2005). This is echoed by diagnostic manuals, such as the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. It is often impossible, however, to differentiate the aetiology of symptoms in patients with advanced disease and multiple symptom burden, and excluding somatic symptoms in the diagnostic assessment risks further an underestimation of mental disorders such as depression (Pessin et al., 2005). In contrast, other diagnostic approaches include all symptoms regardless of their aetiology, and this probably leads to an over-identification of mental disorders (Cassem, 1990). Endicott has suggested a substitutive approach, in which somatic symptoms are replaced in the assessment of depression in patients with somatic diseases (Endicott, 1984). However, even this approach can lead to difficulties in distinguishing psychological symptoms that indicate elevated distress versus a normal adaptive emotional response to the end of life. For example, some catastrophizing thoughts or hopelessness may be present in patients with poor prognosis or in a terminal stage of the disease, yet not be associated with high distress.

During recent years, a range of brief and ultra-brief screening tools have been developed for the assessment of psychological distress in the medically ill. Kelly and colleagues have reviewed these tools and other approaches for measurement of psychological distress in palliative care (Kelly et al., 2006). Single-item screening instruments have been proposed as a useful approach in many conditions. Chochinov and colleagues suggested a single screening item approach (‘Are you depressed?’) for depression (Chochinov et al., 1997). The National Comprehensive Cancer Network (NCCN) in the United States has established the distress thermometer, a single-item measure to measure distress and associate it with one or more experiential domains (NCCN, 2003), and a single-item approach to identify spiritual distress at the end-of-life was published by Steinhauser et al. (2006).

A longer depression assessment has been developed by Pessin and colleagues (Pessin et al., 2005), based on the responses to the following questions:

In populations with advanced illness, the time and burden associated with a comprehensive psychological or psychiatric assessment can be challenging for patients, and the assessment may yield information that is difficult to interpret. These negatives should be balanced against the potential positive outcomes that may follow identification and treatment of factors that contribute to distress for the patient and the caregiver. If a brief assessment, even a screening, provides sufficient information to act clinically, it can suffice; if not, additional efforts should be made to acquire information about the source of distress or mental disorder.

Clinical psychological/psychotherapeutic care for patients with progressing disease and their caregivers comprises a variety of interventions and techniques, all of which can be integrated into a multidisciplinary care plan (Watson and Kissane, 2011). These include, among others, CBT, cognitive analytic therapy, narrative interventions, relaxation and guided imagery, mindfulness-based interventions, meaning-focused interventions, art therapy, and dignity therapy. Psychotropic medication often is combination with psychotherapeutic interventions for patients with severe distress and should be further clarified with the medical care team.

The psychotherapeutic work and goals in palliative care settings differ in several respects from psychological interventions for patients with early or curative diseases or physically healthy individuals. First, the time frame for interventions may be limited. Usually, patients can be seen only a few times, depending on the physical condition, the course of the disease, and the inpatient or outpatient setting. The limited time has several implications for the development of a trustful and sustainable therapeutic relationship and psychotherapeutic treatment planning. Treatment planning often depends on the course of the disease and the sometimes quickly changing supportive care needs of patients and/or their caregivers. It requires medical knowledge pertinent to the patient’s illness, and information about common medical treatments and their side effects. It also requires close contact and collaboration with the palliative care team, if involved. The often unpredictable course of the disease and changes in the supportive care needs may place high demands on the clinician with regard to flexibility, empathy, and understanding of the patient’s situation.

Second, treatment planning for the patient with serious illness must consider that communication with the patient and the caregiver can be hampered not only by severe health conditions, such as delirium, but also by unclear or divergent perceptions about the goals of treatment and the curability of the disease. Temel and colleagues showed that despite having terminal cancer, about one-third of patients newly diagnosed with metastatic non-small cell lung cancer reported that their cancer was curable at baseline, and a majority endorsed getting rid of all of the cancer as a goal of therapy (Temel et al., 2011). In addition, patients experience hope and hopelessness often as closely linked constructs (Sachs et al., 2013). Rodin and Zimmermann used the term ‘double awareness’ to describe the situation of patients with advanced—yet not terminal—disease and the challenge in dealing with issues of death and dying while remaining engaged in life (e.g. dealing with complex treatment decisions, managing changing relationships) (Rodin and Zimmermann, 2008).

The clinical psychologist is often faced with the difficult task of encouraging patients and caregivers to cope adaptively while promoting acceptance. Support for coping may be focused on helping to maintain hope and quality of life, and reduce psychological stress. Acceptance may require that patients and caregivers face ‘realistic’ treatment goals and treatment decisions, which themselves have the potential to negatively affect the psychosocial well-being of the patient and the family. The psychologist must be prepared to manage the emotional responses of the patient and the caregiver, which can include frustration and anger, disappointment, despair, (anticipatory) grief, and high levels of distress. These emotions may lead to difficult therapeutic interactions. Finally, clinical psychologists working in palliative care settings must be prepared to deal with personal feelings generated by the closeness to death and dying, their own sense of helplessness, and existential or spiritual questions about the meaning of life and death.

Psychotherapeutic interventions in palliative care usually have a foundation of supportive psychotherapy, on which is built a multimodal approach. Supportive psychotherapy is defined as a therapeutic intervention that aims to help patients and caregivers deal with distressing emotions, and to promote existing resources, strengths, and adaptive coping with the disease (Lederberg and Holland, 2011). In relation to these issues, the objectives of psychotherapeutic interventions include the following (MacLeod, 2008):

CBT has been shown to be very effective in treating emotional distress and particularly depression in patients with chronic health conditions (Horne and Watson, 2011). Nonetheless, the approach has been used less often in palliative care settings than in the management of patients with non-life-threatening conditions. However, cognitive techniques, such as cognitive restructuring/reframing, and behavioural techniques, such as activity scheduling and distraction, can help to relief distress from specific symptoms such as anxiety, depression, fatigue, and pain. Contraindications to CBT include organic mental syndromes, schizo-affective disorders, and delirium (Horne and Watson, 2011).

Relaxation and image-based interventions comprise a wide range of techniques including guided imagery, visualization, and progressive muscle relaxation. These techniques are easy to learn and may help patients regain a sense of control and mastery, develop coping skills for side effects such as fatigue or nausea, and maintain or regain psychological well-being (Lewis and Sharp, 2011). In patients with severe health conditions, however, it should be considered that an intervention such as visualization of the body or body parts can also increase anxiety or even induce panic. Therefore, whether an intervention is appropriate or helpful for a patient should be carefully considered (Lewis and Sharp, 2011).

Mindfulness interventions, such as mindfulness-based stress reduction (MBSR), have been found useful in patients with life-threatening and advanced diseases (Payne, 2011). These treatments promote (a) self-regulating attention of immediate experience, allowing for greater awareness of mental events in the present moment; and (b) adoption of a curiosity, openness, and acceptance towards one’s one experiences in the present moment (Payne, 2011). MBSR has been found to be effective in reducing a variety of unpleasant psychological states such as anxiety and depression, substance abuse, fatigue, insomnia, and fear of recurrence. It may further promote hope and quality of life.

Meaning-centred psychotherapy, which comprises specific approaches that promote a sense of meaning and purpose, have been receiving increasing attention in populations with life-threatening diseases. They may be realized as group therapy approaches or individual therapy, and are intended to reduce emotional and spiritual distress and promote hope, courage, and control; mobilize internal resources; and discuss future goals despite limited life expectancy (Breitbart et al., 2012; Nissim et al., 2012). Further aims include strengthening a patient’s self-esteem and sense of dignity, to appreciate strengths and past achievements, reduce feelings of isolation, strengthen the relation with the partner and family members, and improve the communication with the professional health-care team (LeMay and Wilson, 2008).

Dignity and respect for the patient and his or her care needs represent an essential attitude in palliative care. A sense of dignity for patients encompasses feelings of respect and being worthy despite increasing physical and psychological symptoms; it is often mediated by both intrinsic and extrinsic factors, particularly social interactions (Chochinov and McKeen, 2011). Dignity-centred therapy is particularly designed for patients at the end of life (life expectancy at least 2 weeks). Based on the empirical dignity model by Chochinov et al. (2002), dignity therapy aims to reduce suffering and promote emotional and spiritual well-being, quality of life, and a sense of meaning and purpose by encouraging patients to reflect on their memorable life events (Chochinov and McKeen, 2011). The intervention includes a dignity therapy interview (e.g. ‘What are your hopes and dreams for your loved ones?’), and one or two therapy sessions. The interview sessions are transcribed, edited, and read to the patient again and (after corrections) the patient is given the document to share it with family members, friends, or others (Chochinov and McKeen, 2011). Dignity therapy was found to be effective in increasing sense of dignity, improving quality of life and spiritual well-being, and enhancing appreciation through the family based on self-report end-of-life experiences (Chochinov et al., 2011).

‘Espero alegre la salida y espero no volver jamás’ [‘I hope the exit is joyful and I hope never to return’] wrote the Mexican-American painter Frida Kahlo on the last page of her diary next to a drawing, the black angel of death (Le Clézio, 2002)—distressing, touching and honest words which express bitterness, resignation, and perhaps relief and hope for a peaceful death at the end of an extraordinary but painful life. The painter, whose health increasingly deteriorated after life-long physical and mental suffering, needed nursing care and intensive pain management, stands as an example for many terminally ill patients whose lives are changed severely by a progressing disease, which affects all areas of life, including their self-determination. Clinical psychological/psychotherapeutic care for patients with progressing disease and their caregivers is an important part of multidisciplinary palliative care and can promote the acceptance of the life lived, quality of life, hope, well-being, and dignity.

Text extracts reproduced from Pessin, H. et al., Clinical assessment of depression in terminally ill cancer patients: a practical guide, Palliative and Supportive Care, Volume 3, Number 4, pp. 319–24, Copyright © 2005, with permission from Cambridge University Press.