Psychotherapeutic Approach for Advanced Illness: Managing Cancer and Living Meaningfully (CALM) Therapy

The World Health Organization (1, 2) has expected diseases such as cancer, cardiovascular disease, chronic obstructive pulmonary disease, and type 2 diabetes mellitus to account for 60% of the global burden of disease and cause more than 70% of all global deaths by 2020. These diseases are associated with ongoing medical care, impaired quality of life, and heightened risk of mortality. They are also associated with significant psychological distress, particularly when they become advanced or life-threatening (3–8). These conditions require adaptation to symptoms, disabilities, and the problem of mortality, but there has been little evidence to guide clinicians as to the most effective psychotherapeutic approaches to help patients in these circumstances.

Mortality-related distress may manifest as depression, demoralization, death anxiety, desire for hastened death, hopelessness, and loss of dignity (9). The causes of this distress may be multifactorial, driven by anticipatory fears about uncertainty and loss of control, physical decline, dependency, and the process of dying and death. Furthermore, disease progression may lead to social isolation, disruptions in personal relationships, and changes in and loss of important roles and life goals. For example, a Canadian study of 400 ambulatory patients with metastatic cancer followed longitudinally until the end of life (10) found that more than 20% of patients reported significant symptoms of depression and hopelessness. Without intervention, this distress became two to three times more common near the end of life (11). This psychological distress has been found to be associated with other negative outcomes, including nonadherence to treatment and decreased quality of life (12).

Advances in medical care have improved survival for those with major medical conditions (13), and patients are living longer while facing multiple comorbid conditions and challenges in physical, psychological, social, and spiritual domains. Early introduction of palliative care for those with advanced disease has been shown to improve psychological well-being, quality of life, and survival (14, 15). Significant aspects of such care involve managing distress about anticipated future disability and mortality, facilitating decision making and end-of-life preparation, and optimizing present quality of life. Until recently, however, there has been little evidence-based guidance and fewer standardized treatment approaches for psychosocial interventions to relieve suffering than to manage and provide palliative care for general medical symptoms (16).

Approaches to Psychological Care for Patients With Advanced and Life-Limiting Illness

Therapeutic elements common across psychotherapeutic modalities include establishing and maintaining a safe and supportive therapeutic alliance, providing empathic listening, fostering understanding and reflection, providing psychoeducation, and facilitating a collaborative approach to goals and tasks (17, 18). Some specific needs and issues, however, should be taken into account for the psychotherapeutic treatment of those with advanced or life-threatening disease. These issues include the variable general medical status of such patients, who fluctuate in their ability to attend or engage in psychotherapy, as well as the existential concerns and death-related distress that may affect patients and their wider support systems, including their families and health care providers. Patient perceptions of their prognosis and the salience of their mortality can create both opportunities and challenges for psychotherapeutic engagement. Effective interventions should address both the nonspecific and specific needs of this population.

Research and innovation in the psychological care of those with advanced and life-threatening disease has often occurred first among patients with cancer (19). Because of the somewhat predictable course of metastatic cancer, health care providers, patients, and families may be able to anticipate problems and to initiate advance care planning earlier in the course of illness. It is not surprising, therefore, that the majority of evidence-based approaches to the psychosocial management of advanced and life-limiting illnesses have originated within cancer care. Many of these approaches can be adapted to other populations facing similar psychological challenges, despite differences in disease pathophysiology and general medical symptom profile.

Research is growing in the development, modification, and testing of a variety of psychotherapeutic modalities targeting different psychological outcomes for those with advanced illness. A meta-analysis (20) of 32 randomized controlled trials of psychological treatments for patients receiving palliative care (half of the trials within the population with cancer) found greater effect sizes for reduction of depressive symptoms compared with anxiety symptoms and found that cognitive-behavioral and mindfulness-based interventions had greater effects on reduction of depressive symptoms than did dignity-based interventions. Although the feasibility of cognitive-behavioral therapy has been demonstrated for those with advanced disease (21), a recent large randomized controlled trial (22) found that cognitive-behavioral therapy was not effective in the treatment of depression for individuals with advanced disease. A review of interventions targeting death anxiety in individuals with advanced cancer has supported the benefit of meaning-based and dignity-based interventions (23).

Of the interventions developed specifically for patients with advanced disease, those with the most evidence for their benefit include supportive-expressive group therapy, meaning-centered psychotherapy (MCP), dignity therapy, and managing cancer and living meaningfully (CALM) therapy (described in greater detail below). Supportive-expressive group therapy was designed to facilitate peer support and exploration of existential distress and has been found to benefit mood, coping, and traumatic stress symptoms among women with metastatic breast cancer (24–26). MCP is focused on sustaining or enhancing the patient’s sense of meaning and purpose through psychoeducation and facilitated exercises. It has been shown in group formats to improve spiritual well-being, quality of life, depression, and hopelessness and to lessen general medical symptom distress and desire for hastened death, compared with a manualized supportive group psychotherapy intervention (27). In an individual format (28), MCP has been shown to improve spiritual well-being, sense of meaning, quality of life, desire for hastened death, and anxiety, compared with usual care, and to have benefits for sense of meaning and quality of life, compared with supportive therapy. Through the process of life review, dignity therapy provides the opportunity to reflect on what has been important to patients. Interviews that explore memories, values, and messages to loved ones are compiled into a legacy document that can be shared with others. Qualitative research has found that patients and families view dignity therapy as positive and helpful (29), although there has been inconsistent evidence regarding the effect of dignity therapy on depressive and anxiety symptoms. These inconsistencies may have been due to obstacles in recruitment, attrition caused by illness, and low levels of patient distress at baseline (30–32).

Numerous individual pilot studies and trials have demonstrated evidence for the benefit of various other psychotherapeutic approaches adapted to this population. Some of these include mindfulness-based interventions (33), acceptance and commitment therapy (34), collaborative care models (35), problem-solving interventions (36), narrative interventions (37), cognitive-behavioral stress management (38), family-focused grief therapy (39), and additional couples and family-based interventions (40).

Overall, the growth in clinical and research attention to this area is promising. Further study is needed to clarify the most meaningful clinical outcomes for this population, to identify optimal timing for these interventions, and to clarify patient selection criteria for different modalities. Beyond this, knowledge translation and implementation activities are needed to promote awareness, training, and competency in the most effective interventions.

CALM Therapy

CALM therapy is an example of a psychotherapeutic intervention developed to address the wide range of problems encountered by those living with advanced and life-threatening illness (41). Although CALM therapy was developed for patients with advanced cancer, adaptations are being developed for other populations, such as those living with Huntington’s disease, amyotrophic lateral sclerosis (42), and advanced cardiovascular conditions. This brief, semistructured intervention is intended to relieve distress and to promote psychological growth among patients with advanced cancer. It was developed specifically to help patients attend to the dual tasks of living with advanced disease, while also preparing for progressive disability, dependency, and end of life. It is intended for patients who are well enough to participate in a supportive-expressive intervention but are grappling with issues related to mortality and future uncertainty. The theoretical foundations of CALM therapy include relational theory, which emphasizes the joint creation of meaning between therapist and patient (43); attachment theory, which encourages attention to different styles of accessing support in the face of threat (44); and existential theory, which focuses on dilemmas associated with confronting mortality and the finality of existence (45).

CALM therapy consists of three to six sessions, usually of 45 minutes, delivered across 3 to 6 months. There is no formal termination of therapy, and further support can be provided as needed. It is an individual and couples-based therapy in which patients are invited to bring their designated caregiver to one or more sessions. Interventions are adapted to patient and caregiver needs by using supportive approaches, such as education and validation, and expressive approaches, including facilitation of reflection and creation of meaning. The timing of sessions and content explored are guided by the patient’s interests and priorities. The therapist facilitates exploration of four broad domains, while also attuning to and helping to regulate the patient’s emotional state. The therapeutic approach is flexible, allowing attention to both practical issues (e.g., navigating health care resources, providing information about illness and resources, advanced care planning) and to existential issues (e.g., personal sources of meaning and hope). CALM aims to support and encourage “double awareness” in patients and families, which can be understood as the ability to face the imminence of physical deterioration and mortality while maintaining engagement with life (46). CALM therapy content includes four broad and interrelated domains.

Domain 1: Symptom Management and Relationships With Health Care Providers

The therapy’s first domain is focused on the patient’s symptoms, general functioning, and relationships with health care team members. The therapy may facilitate the patient’s active involvement in his or her medical care and collaborative relationships with health care providers for optimal symptom control and medical decision making.

Domain 2: Changes in Self and Relations With Close Others

The second domain is focused on the patient’s experience in relationships with close friends and family in the context of having an advanced disease. The therapy may facilitate expressions of grief and mourning regarding multiple losses that may affect the patient’s self-concept and social roles. This domain may explore anxieties and conflicts about dependency and potential barriers to accepting support in the face of progressive disease. This domain may include attention to the unique needs of children within the family.

Domain 3: Sense of Meaning and Purpose

The third domain is focused on the patient’s spiritual beliefs and/or sense of meaning and purpose in life. Therapy to address this domain may support and encourage understanding of the personal meaning of suffering and dying and reevaluation of priorities and values in the face of advanced disease.

Domain 4: The Future, Hope, and Mortality

The fourth domain is focused on the patient’s attitudes toward the future and his or her hopes and fears about living with and/or dying from advanced disease. Therapy in this domain may encourage acknowledgement of anticipatory fears and anxieties and may facilitate attention to advanced care planning, life closure, and death preparation.

CALM Therapy Approach and Techniques

The CALM process may involve a variety of techniques that are individualized to the needs of the particular patient, family, and moment in therapy. Overall, the therapeutic strategy is to facilitate mentalization, which is the capacity to reflect on states of feeling, to distinguish them from literal facts, and to accept the possibility of multiple perspectives on events. Such mentalization may be particularly important in the face of mortality in order to sustain and tolerate double awareness (47). This outcome is facilitated by a therapeutic relationship that can serve as a secure base for patients and families as they consider and explore the distress associated with uncertainty and mortality. CALM therapy is intended to create space to acknowledge the realities of a limited prognosis while appreciating the multiple and varying psychological responses to the situation. CALM therapy therefore differs from other psychotherapeutic modalities in which the therapeutic process may involve focus on prescriptive goals, positivity, reassurance, or challenging of cognitive distortions.

CALM therapy can be delivered by a wide variety of trained health care providers, including psychiatrists, psychologists, palliative-care physicians, nurses, social workers, and spiritual care providers. Two important qualifications are that the clinician’s discipline permit psychotherapeutic care within its scope of practice and that the clinician have experience and knowledge of cancer and its treatment. Achieving competence to deliver the intervention includes participation in a 2-day, interactive, case-based workshop and satisfactory completion of therapy for two patient cases, under the supervision of a trained CALM supervisor.

A significant and integral aspect of the CALM approach includes ongoing peer supervision. Even beyond the training phase, clinicians delivering this modality are advised to meet regularly with a group of peers to review cases, discuss CALM-specific interventions, and provide the therapist an opportunity for reflection on the work. This supervision is necessary not only to ensure treatment integrity but also to foster ongoing CALM therapy skill acquisition and to manage existential distress among clinicians themselves. Supervision can provide a forum for ongoing therapist development, collegial support, and a fostering of realistic expectations. This kind of supervision may mitigate clinician burnout (i.e., persistent exhaustion and cynicism in the face of stressors) associated with facing the existential distress among patients and families by providing guidance, support, realistic expectations, and reflective space (48, 49).

Qualitative and quantitative research with patients with advanced cancer has found that CALM therapy can relieve patients’ emotional distress and can promote well-being. Qualitative research has identified no adverse risks or concerns reported by patients and has identified five unique benefits of the intervention: having a safe place to process the experience of advanced cancer, having permission to talk about death and dying, receiving assistance in managing the illness and navigating the health care system, receiving support in resolving relational strain, and experiencing an opportunity to “be seen as a whole person” within the health care system (50). These qualitative results also have been supported by a quantitative pilot trial with 39 participants (51), which found that CALM therapy was associated with a reduction in depressive symptoms and death anxiety and an increase in psychological growth and spiritual well-being at 3 and 6 months after therapy initiation. A large randomized controlled trial (52) comparing CALM therapy to usual care among 305 patients with metastatic cancer recruited from oncology clinics demonstrated significantly greater improvements in depressive symptoms at 3 (Cohen’s d=0.23) and 6 months (d=0.29) in the CALM treatment group compared with the usual care group. Furthermore, significant improvements in end-of-life preparation were found at 3 (d=0.26) and 6 months (d=0.32) in the CALM treatment group compared with the usual care group (52). It was also found that patients who were not depressed at baseline were less likely to become depressed at the 3- and 6-month follow-up, suggesting a preventive effect from therapy.

The Importance of Advocacy, Training, and Standard Setting

Psychological interventions for patients and families experiencing advanced disease are not well integrated into either oncology or palliative care (53). A majority of health care providers do not feel well trained or competent enough to handle psychological distress associated with mortality (54). Capacity building first requires reframing health care as necessarily encompassing not only attention to disease and quality of life but also to quality of death, often a taboo topic within medicine and cultures more comfortable with a focus on the physical dimension of illness and cure. It is widely acknowledged that mutual collusion of patients, families, and health care providers in the avoidance of death-related distress can lead to fewer discussions about the goals of care and to potentially more aggressive and/or futile care (55). A focus on teaching psychotherapeutic skills, such as those essential to CALM therapy, could improve clinical communication about treatment planning and the goals of care for patients with advanced disease.

One example of this type of advocacy initiative is the global CALM network that has been established to facilitate implementation and adaptation of CALM therapy in diverse settings, cultures, and languages. Research trials in Germany (56) and Italy have been completed, and pilot studies are underway at other sites within North America, the Netherlands, Portugal, China, and Japan. This work is demonstrating that the CALM approach is applicable and adaptable to different settings and health care systems. This growing network is creating momentum to improve awareness of and standards for the psychological aspects of palliative care.

At present, the availability of psychosocial resources to those facing advancing disease and mortality varies across the globe. Advocacy is needed to heighten awareness among clinicians and policy makers of the evidence that specialized psychotherapeutic interventions are effective in addressing the psychological needs of those living with advanced and life-threatening illnesses and to ensure that the prevention and treatment of this psychological distress becomes a standard of care. A focus on global collaborative efforts aimed at teaching, training, and adapting interventions such as CALM may help to ensure access to more universal, equitable, patient- and family-centered care that addresses all dimensions of patients’ suffering and well-being until the end of life.

Conclusions

There is significant need but a limited evidence base to guide efforts aimed at relieving the psychological suffering of individuals with advanced and life-limiting illness. The unique challenges faced by these patients demand psychotherapeutic interventions that are flexible and that can support practical, relational, and existential, concerns. CALM therapy is one of several novel interventions designed for this population. Ongoing research, as well as advocacy, training, and implementation efforts (Box 1), are necessary to ensure that clinical attention to the psychological dimension of advanced disease becomes a global standard of care.