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Journal of Clinical Oncology logoLink to Journal of Clinical Oncology
. 2020 Feb 5;38(9):915–925. doi: 10.1200/JCO.19.00013

Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer

Joseph A Greer 1,2,✉, Allison J Applebaum 3, Juliet C Jacobsen 1,2, Jennifer S Temel 1,2, Vicki A Jackson 1,2
PMCID: PMC7082158  PMID: 32023161

Abstract

Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.

INTRODUCTION

When confronting major life stressors or threats, coping represents the strategies that individuals use to manage the internal and external demands that are perceived as burdensome or exceeding their personal resources.1 From the moment of diagnosis of advanced cancer, patients and their caregivers experience a variety of practical, social, emotional, and existential concerns due to the nature of the disease, treatments, and prognosis. To manage such stressors, patients and families engage in various coping strategies, which may evolve over time and be more or less effective for improving adjustment and well-being. Researchers have conceptualized coping strategies in multiple domains, such as: problem-focused (ie, efforts to modify or resolve the stressor), emotion-focused (ie, efforts to reduce or regulate the distress from the stressor), and meaning-focused (ie, efforts to maintain positive well-being) coping, among others.1-3 Another common distinction in the literature pertains to whether coping methods reflect engagement, consisting of active or approach-oriented strategies to manage the stressor directly, or disengagement, in which individuals seek to avoid or withdraw from dealing with the stressor.4 Faced with a serious illness, patients and families use multiple forms of coping through a dynamic process that both affects and is influenced by one’s environment, resources, and emotional well-being.

The aims of this review are to describe coping processes in patients with advanced cancer and their caregivers as well as the role palliative care may play in promoting effective coping. Given that research on coping with cancer is vast, spanning decades, we limit the scope of this review to studies of patients with advanced cancer and their caregivers. After highlighting the correlates of coping in this population, we discuss the role and evidence for palliative care to improve coping, limitations of the research, future directions, and recommendations for practice.

COPING AND ITS CORRELATES IN PATIENTS WITH ADVANCED CANCER

Qualitative studies have helped to elucidate the experiences of patients coping with advanced cancer from the time of diagnosis to approaching the end of life. After the initial diagnosis of cancer, key concerns for patients include physical symptoms and adverse effects, loss of functioning, possibility of progressive disease, persistent uncertainty, and management of life-limiting illness.5,6 In response to these stressors, patients often initially draw on their existing coping strategies before their cancer diagnosis to manage distress and psychological well-being.7 These strategies further develop as patients find ways to live with the disease and may include a combination of remaining positive, avoiding disease-related thoughts, soliciting social support, maintaining normal life routines to the extent possible, modifying expectations, finding acceptance, and engaging in religious and/or spiritual coping.5,7-11 For some patients, the advanced cancer experience can also be a stimulus for finding a deeper sense of meaning and personal growth at the end of life.12

The process of coping across the disease trajectory is dynamic, often influenced by context. Patients may move moment-to-moment from being more or less hopeful and confident in their ability to cope based on how they feel physically and emotionally or whether they received difficult news about their prognosis. The diagnosis of advanced disease often triggers intense emotions for patients, who may vacillate between periods of directly contemplating dying versus restraining thoughts of death either through optimistic thinking or by drawing on their resources to engage in meaningful connections with life.13 When discussing prognosis in clinical encounters, patients, caregivers, and palliative care professionals agree that a variety of strategies can foster effective coping. These strategies include emphasizing control of physical symptoms, providing emotional and practical support, identifying and working toward realistic goals, focusing on present day-to-day living, and balancing prognostic disclosure with nurturing hope.14

In addition to using qualitative methods, investigators have quantitatively examined the use of different coping strategies in patients and caregivers with a variety of validated self-report tools. No single gold standard for assessing coping strategies currently exists. Some measures are specific to patients with cancer, and others are more general checklists of a broad array of coping behaviors. Table 1 lists examples of coping inventories commonly used in oncology, including descriptions of their subscales and domains of assessment. Several of these tools have undergone iterative rounds of psychometric testing, with both long and brief forms.

TABLE 1.

Examples of Validated Self-Report Coping Measures

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In numerous cross-sectional studies, researchers have investigated associations between various coping strategies and clinical, psychological, and quality-of-life (QOL) outcomes in patients with cancer. To date, no consistent evidence demonstrates that psychological coping increases or decreases the risk of cancer recurrence or survival.24-26 Nonetheless, patient coping seems to be related to symptom severity and health behaviors. For example, one study showed that women with recurrent breast cancer and lower coping capacity reported experiencing more symptoms and higher levels of symptom distress compared with those with greater coping capacity.27 In this study, coping capacity referred to having a sense of coherence in perceiving the world and one’s life as comprehensible, manageable, and meaningful.27 In addition, men with prostate cancer who engage in avoidance coping (ie, behavioral disengagement, denial, and distraction) report greater severity of sleep-related symptoms and interference in functioning.28 Finally, patients with advanced cancer who are current smokers experience worse pain, require higher doses of opioid medications, and are more likely to cope by using substance use, denial, and self-blame compared with former or never-smokers.29 These studies highlight potential targets of intervention to enhance coping efforts and ideally ameliorate the burden of disease and treatment.

With respect to psychological and QOL outcomes, recent reviews suggest that disengaged coping (eg, avoidance) and poor self-efficacy for coping with cancer (ie, lack of confidence in one’s ability to perform various behaviors to cope with cancer and its treatment) are associated with higher distress and worse QOL.30,31 However, the types of coping strategies that patients use and their relationships to these outcomes may differ depending on a variety of factors, including the population, assessment measure, and whether treatment is curative versus palliative.32-34 In a sample of 350 patients who completed the Brief COPE questionnaire within 8 weeks of a diagnosis of incurable lung or GI cancers, the most commonly endorsed strategies included emotional support, positive reframing, and active coping (eg, taking action to make the situation better), followed by acceptance, self-blame, and denial.35 Emotional support and acceptance coping correlated with better QOL and mood, whereas the use of denial and self-blame was associated with worse QOL and symptoms of anxiety and depression.35 Also, longitudinal studies suggest that coping capacity and self-efficacy are salient factors in predicting QOL over time in patients with advanced lung cancer.36,37 Adjusting one’s life goals, finding acceptance, and taking action are related to less anxiety and depression and better QOL after a diagnosis of advanced breast and ovarian cancers, respectively.38,39

Investigators have also examined patient coping as a moderator of outcomes. For example, among patients with advanced breast cancer, engagement coping (eg, active coping, planning, seeking support, positive reframing) and self-efficacy for coping with cancer seem to moderate the effects of symptom stress and distress on QOL.40,41 That is, the negative correlations of symptom stress and distress with QOL seem to be mitigated in patients with advanced breast cancer who report higher engagement coping and greater self-efficacy for coping with cancer.40,41 In a study of patients with incurable lung or GI cancers, those who had accurate prognostic awareness with respect to perceptions of their health status and treatment goal were more likely to report worse QOL and mood symptoms compared with those with inaccurately optimistic perceptions.42 However, the researchers also found interaction effects between patient prognostic awareness and certain coping strategies. Specifically, greater use of positive reframing and active coping was associated with better QOL and fewer depression symptoms among those who accurately reported that their health status was terminal or identified their oncologist’s treatment goal as not to cure their cancer, respectively.42 The associations between these coping strategies and QOL and depression symptoms were not as strong or significant in patients with inaccurate understanding of their health status or goal of treatment. Thus, the use of particular coping strategies may buffer the relationships between prognostic awareness and worse QOL and mood outcomes.

Another salient target of investigation has been on the important role of spiritual and religious coping in patients with advanced cancer. The majority of patients consider themselves spiritual or religious, often relying on their beliefs, communities of faith, and practices to cope with cancer.43,44 Spiritual and positive religious coping (eg, seeking a stronger connection with or help from God) is associated with higher QOL and better mental health.44-47 Furthermore, patients with advanced cancer who report using positive religious coping have lower rates of completing a living will and a greater likelihood of receiving intensive life-prolonging medical care near death.48-50 The underlying mechanisms for these relationships remain unclear.

Many patients with advanced cancer also struggle with religion and spirituality; one study showed that 44% of patients report some degree of spiritual pain.43,51 Spiritual struggle and negative religious coping (eg, feeling punished or abandoned by God) are correlated with psychological distress, suicidal ideation, and worse QOL.46,51,52 Although most patients with advanced cancer believe their medical team ought to address spiritual concerns,44,51 such care is often lacking. Thus, to promote spiritual support for patients and families, the Clinical Practice Guidelines for Quality Palliative Care underscore spiritual, religious, and existential aspects of care as a central domain of high quality, comprehensive palliative care.53

ROLE OF PALLIATIVE CARE TO PROMOTE EFFECTIVE COPING

Before the recent growth of outpatient palliative care programs, palliative care (PC) clinicians principally provided consultations for hospitalized patients with serious illnesses near the end of life who require acute symptom management, advance care planning, and referral to hospice services. Shifting the model of care to the outpatient setting and integrating palliative care early in the course of disease have allowed PC clinicians to develop longitudinal relationships with patients and families, expanding their role beyond symptom management to include helping patients live well through adaptation and effective coping with the serious illness.54 Studies have shown that the predominant focus of palliative care consultations in the early, integrated model for patients with advanced cancer was on symptom management and coping support.55,56 Although addressed less often, clinicians also consistently assessed and discussed patient illness understanding and prognostic awareness across visits, whereas topics pertaining to advance care planning, treatment decisions, and disposition (eg, hospice referral) increased in frequency in latter visits as patients neared death (Fig 1).55,56

FIG 1.

FIG 1.

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Content of palliative care (PC) visits across the illness trajectory.55 Palliative care clinicians recorded the content they addressed after each visit. Reported proportions for the final three visits are restricted to decedents. Reported proportions for the initial three visits exclude visits that were also among the final three visits. Reported proportions for middle visits represent averages across all available middle visits.55

In the early, integrated model, PC clinicians work collaboratively with oncologists to provide complementary yet distinct care for patients with advanced cancer and their caregivers. Analyses of clinician documentation as well as audio-recorded visits of patient consultations with oncology and palliative care reveal that both specialists discussed symptom management, medical understanding, and treatment decision making at key clinical time points, such as disease progression.56,57 However, PC clinicians more often than oncologists addressed patient coping and assessed understanding of treatment process and prognosis.56,57 In the outpatient oncology setting, PC clinicians viewed their complementary role through three domains: (1) managing symptoms to improve functional status and QOL, (2) facilitating patient coping, acceptance, and planning, and (3) serving as an interpreter between the patient and oncologist.58

PC clinicians emphasize coping with patients and caregivers not only to bolster resilience, adaptation, and well-being but also to help patients with advanced cancer and their caregivers come to a deeper understanding of prognosis and tolerate having a terminal diagnosis. Jacobsen et al59 have conceptualized the process by which the early, integrated palliative care model helps improve QOL and end-of-life care outcomes in patients with advanced cancer as a dual framework of focusing on living well while acknowledging the possibility of dying. That is, as patients experience greater symptom control and enhance their coping repertoire by working with palliative care, they develop increased psychological capacity to understand and accept their prognosis. Ideally, this process unfolds over time, within the context of a longstanding patient-clinician relationship, enabling patients and caregivers to prepare for the future and make informed treatment decisions that are consistent with their goals and values.59 Indeed, prior studies demonstrated that patients who received early, integrated palliative care retained and developed more accurate prognostic awareness over time and had higher-quality end-of-life care compared with those who received usual care.60,61

To enhance coping, PC clinicians should first assess, normalize, and validate patients’ prior coping efforts for managing difficulties and crises in the past. Yet, even with these skills, many patients with advanced cancer feel a tremendous loss of self and inability to rely on their normal coping mechanisms because of decrements in functioning from disease progression and treatment adverse effects. Therefore, PC clinicians should work with patients and caregivers to process the grief associated with such losses while introducing new coping strategies that are consistent with the patient’s functional status.62 Table 2 details various cognitive, behavioral, emotional/physiologic, and existential/spiritual coping strategies that PC clinicians discuss with patients and caregivers. An analysis of palliative care visits from an early, integrated palliative care trial of patients with incurable lung or GI cancers showed that PC clinicians often focused on ways to redirect hope toward realistic goals and used behavioral approaches (eg, soliciting social support), especially early on in the disease course, and then shifted to counseling support in later visits. Clinicians also drew on spiritual and existential (eg, life review) coping with patients and caregivers.55

TABLE 2.

Example Coping Strategies Clinicians Discuss in Early, Integrated Palliative Care

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Moving palliative care to the outpatient setting and earlier in the disease course has necessitated the development of new skills for clinicians who have had limited training in how to assess, support, and teach effective coping strategies. Results from a pilot study of a training program to teach psychological skills to oncology and PC nurse specialists (under the supervision of clinical psychologists) showed that nurse specialists gained confidence in their ability to provide psychoeducation to support coping strategies in patients and caregivers.63 The successful deployment of early, integrated palliative care may require additional training and supervision within multidisciplinary teams to ensure clinician competence in these care domains.

EVIDENCE FOR PALLIATIVE CARE TO IMPROVE COPING AND PSYCHOLOGICAL OUTCOMES

Recent meta-analyses of palliative care interventions for patients with life-limiting illness, including cancer, demonstrate that the benefits of palliative care are most robust for improving patient QOL and reducing symptom burden.64,65 The results are mixed with respect to the effect of palliative care on patient mood symptoms.64,65 Otherwise, data on the role of palliative care in improving patient coping are limited. A qualitative study of patients with advanced cancer who participated in a trial of concurrent oncology and palliative care (ENABLE II: Educate, Nurture, Advise, Before Life Ends) highlighted the potential benefits of the intervention on patient coping. Specifically, participants perceived the intervention to be helpful by enhancing problem-solving skills, coping with uncertainty and concerns about the future, empowerment, support, and reassurance.66

Only one clinical trial has demonstrated that early palliative care can enhance patient coping. In a sample of 350 patients with incurable lung or GI cancers, early palliative care integrated with oncology care significantly increased the use of approach-oriented coping strategies (ie, active coping, positive reframing, and acceptance) compared with usual care.67 Moreover, the positive changes in approach-oriented coping mediated the beneficial effects of early, integrated palliative care on patient-reported QOL and depression symptoms.67 Subgroup analyses suggest that the effect of the palliative care intervention on coping may be more pronounced in younger than older patients.68 In a separate analysis of 2,921 palliative care visits from the intervention group of this trial, investigators observed that the most commonly addressed topics between clinicians and patients were symptom management (74.5% of visits) and coping with cancer (64.2% of visits). Among patients in the intervention group, a higher proportion of visits involving discussions of coping was associated with improved QOL and fewer depression symptoms from baseline to week 24.55

Other studies of palliative care interventions to improve coping in patients with advanced cancer are emerging. For example, a single-group pilot trial of a chaplain-led spiritual care intervention for patients with advanced cancer receiving outpatient palliative care showed significant improvements in the Fighting Spirit subscale (eg, adopting a positive attitude and determination to cope with cancer) and adaptive coping factor of the Mini-Mental Adjustment to Cancer Scale from baseline to postassessment 6 to 8 weeks later.69 The pastoral care intervention in this study involved three sessions with a chaplain to identify and address unmet spiritual needs regarding three core themes: meaning and direction, self-worth and belonging to community, and relationship reconciliation.69 Researchers have also begun testing primary palliative care models to train members of the cancer care team to deliver palliative care in the community oncology setting. A single-arm pilot study of an oncology nurse–led care management intervention to address palliative care needs in patients with advanced cancer demonstrated feasibility, with high rates of enrollment and retention of more than 75%, as well as acceptability, with 91% of patients and caregivers reporting that the supportive care intervention helped them cope with the illness.70 Although such preliminary data are encouraging, additional efficacy testing of interventions is needed to confirm the role of palliative care in enhancing patient coping and to identify which coping strategies most strongly predict improved clinical outcomes.

COPING IN CAREGIVERS OF PATIENTS WITH ADVANCED CANCER

Because the considerable stress and psychological sequelae of advanced cancer are shared by patients and their loved ones alike,71 a growing body of research has emerged detailing the coping responses of informal caregivers. Although not always consistent, findings from observational studies suggest that avoidant, dysfunctional, or emotion-focused coping strategies are associated with distress, caregiver burden, and psychiatric morbidity in caregivers of patients with advanced cancer.72-76 In contrast, caregivers using active coping strategies are more likely to have positive expectations and a hopeful attitude for the future.77 In addition, a small study of caregivers of patients with advanced cancer receiving palliative care revealed that 58% reported spiritual pain associated with dysfunctional coping strategies.78 Finally, caregivers of patients with terminal cancer who engage in negative religious coping (eg, feeling punished or abandoned by God) are more likely to have higher burden, poorer QOL, and depressive and anxiety disorders.79

The dyadic relationship may play an important role in how patients with advanced cancer and their caregivers cope. For example, patient use of acceptance coping is associated with lower caregiver depression symptoms, whereas patient coping through seeking emotional support is related to higher caregiver depression symptoms.80 Moreover, caregiver use of avoidance, emotion-focused, and problem-focused coping strategies significantly correlate with patient outcomes of physical function and symptoms.81 These findings underscore the potential value of targeting dyadic adjustment to enhance coping and well-being when managing the stress of advanced cancer.82

Although recent evidence demonstrates the benefits of early palliative care in improving caregiver depression symptoms,83,84 data are limited regarding its effects on caregiver coping. McMillan et al85 conducted a randomized trial to test the efficacy of a hospice plus coping skills training intervention with family caregivers of hospice patients with cancer. The intervention led to improvements in caregiver QOL and burden but did not affect caregiver mastery or problem- or emotion-focused coping.85 More recently, two large trials of dyadic interventions have shown some promise. Specifically, a home-based education and support intervention for patients with advanced cancer and family caregivers resulted in improved dyadic coping (ie, reduced avoidance strategies) and self-efficacy at 3 months, although effects generally were not sustained at 6 months.86 In addition, a home-based specialized palliative care and dyadic psychological support intervention in patients with advanced cancer and their caregivers led to improvements in common coping (ie, how the dyad manages problems together) among couples but not among parent-child dyads or other dyads in the study.87

LIMITATIONS OF THE SCIENCE AND FUTURE DIRECTIONS

Criticisms of coping research have focused on methodological considerations, including the use of general checklists to assess coping strategies, reliance on cross-sectional designs, and potential confounding in accounting for associations between coping and outcomes.88 Despite the abundance of studies on coping in response to major life stressors, including cancer, no specific strategies consistently predict better outcomes across patients or situations, questioning the utility of established coping assessments. For example, an emotion-focused coping strategy like self-distraction may be a helpful approach for managing stress in one circumstance, while reflecting maladaptive avoidance in another. Moreover, with cross-sectional study designs, we are unable to discern whether certain coping strategies lead to specific outcomes or vice versa.88 Research on coping and distress has been confounded by the diverse array of measures and operational definitions for coping and the fact that those who experience worse symptoms or psychological difficulties have a greater need to engage in various coping efforts.4,89

To overcome the aforementioned limitations, prospective intervention research with randomized designs that clearly specify coping targets is needed. As research on palliative care has evolved to new models emphasizing longitudinal relationships with patients and caregivers in the outpatient setting, researchers should consider the specific ways that palliative care promotes effective coping over time. Coping measures that assess those processes should also be incorporated in trials to explicate the mediating mechanisms by which the interventions lead to desired clinical outcomes.90 Finally, although a diagnosis of advanced cancer likely represents a universal stressor, coping responses may differ across time, context, or patient populations. Additional research is needed to examine heterogeneity in coping and outcomes on the basis of diverse clinical and demographic characteristics.

Although current evidence is limited, recent palliative care studies lay the necessary foundation for continued pursuit of research on the assessment and promotion of coping in patients with advanced cancer and their caregivers. Numerous trials have confirmed the benefits of early, integrated palliative care for patient QOL and symptom burden.65 The next generation of research should focus on the means by which these improved outcomes are achieved. Patient and caregiver coping strategies represent key targets of this investigation, given clinical, theoretical, and accumulating empirical evidence demonstrating important links among coping, QOL, mood, prognostic awareness, and end-of-life care in this population.

With respect to the delivery of clinical care, best practice guidelines do not yet exist regarding the role of palliative care to improve patient and caregiver coping. Nonetheless studies of early, integrated palliative care clearly show that a primary focus of intervention is on enhancing patient and caregiver coping throughout the disease course.55,56 The types of coping strategies vary over time and include cognitive, behavioral, spiritual, and existential approaches, among others.62 Therefore, clinicians should ideally incorporate routine assessment of patient and caregiver coping in practice. The aims of these discussions are to reinforce existing effective coping and support the patient and family to broaden their coping repertoire with novel strategies that are reasonable and meaningful, given fluctuations in patient status over time. In addition, home-based dyadic interventions may further enhance how patients with advanced cancer and their family caregivers cope as a unit.

Exciting advances in palliative care delivery models in the outpatient setting have improved comprehensive care and outcomes for patients with advanced cancer and their caregivers. With the innovations in the early integration of palliative and oncology care, clinicians and researchers have focused particular attention on the ways that patients and caregivers cope with cancer throughout the disease course and at the end of life. Numerous qualitative and observational studies have elucidated the diverse array of coping strategies that patients and caregivers use, which are associated with key clinical outcomes such as QOL. Moreover, data suggest that PC clinicians play an essential role in the ongoing evaluation and promotion of coping strategies to manage effectively the burdens of disease, cancer treatment, and existential distress in patients and caregivers. Although prior research has been limited because of cross-sectional study designs and use of general checklists to assess coping, the field is now progressing, with prospective randomized controlled trials that demonstrate the positive effects of palliative care on particular coping strategies and the mechanisms by which changes in coping relate to improved QOL and mood in patients with advanced cancer. As this body of research matures and clinicians are called on to address coping in practice, evidence-based guidelines and multidisciplinary training will be valuable tools to support PC clinicians in empowering patients and families to cope successfully with the numerous stressors of advanced cancer and evolving medical therapies.

Footnotes

Supported by National Institute of Nursing Research Grant No. R01 NR012735 (J.S.T.).

AUTHOR CONTRIBUTIONS

Conception and design: Joseph A. Greer, Allison J. Applebaum, Jennifer S. Temel, Vicki A. Jackson

Collection and assembly of data: Joseph A. Greer

Data analysis and interpretation: All authors

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/journal/jco/site/ifc.

Joseph A. Greer

Consulting or Advisory Role: Vector Oncology

Research Funding: Pfizer (Inst)

Patents, Royalties, Other Intellectual Property: Royalties from Springer Publishing for edited book, The Massachusetts General Hospital Handbook of Behavioral Medicine.

Jennifer S. Temel

Research Funding: Pfizer (Inst)

No other potential conflicts of interest were reported.

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