Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research

Abstract

Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' well-being. Interventions for caregivers of persons at end-of-life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. While useful, these interventions generally ignore a primary stressor for family caregivers—a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.

Introduction

Family caregiving is essential to the well-being of patients with serious illness. At least 12 million people in the United States provide care to loved ones with serious limitations in activity that prevent them from attending school, work, or caring for themselves (1). Among the terminally ill, 96% of caregivers are family members (2). Family members perform essential tasks like helping with day-to-day chores, coordinating care among different health care providers, and providing medical care. The spouses of terminally ill patients may spend more than 100 hours a week in these activities (3). These numbers underscore the central role that family caregivers play in caring for people who are seriously ill.

Unfortunately, providing care to a seriously ill family member can compromise the caregiver's overall health, or physical, psychosocial, and spiritual well-being (4). For example, numerous studies have linked caregiving to a broad range of health outcomes including cardiovascular disease, impaired immune function, hyperinsulinemia, and increased mortality (5, 6). A recent meta-analysis demonstrated that caregivers had worse physical health and mental health than their noncaregiving peers. (7). In fact, rates of depression can be as high as 50% when the patients are terminally ill (8). Caregivers often also report needs for social and spiritual support (9, 10).

The importance of family caregivers to the care of patients with serious illness has sparked the development of a variety of interventions designed to improve caregiver well-being (11). However, although the support of family caregivers has been a central tenet of palliative care for decades, few of these interventions have been developed for caregivers of patients at end-of-life (12). For example, a systematic review of interventions for caregivers in palliative care uncovered only 22 interventions, typically educational sessions, respite care, or support provision. The interventions were described as often atheoretical, underdeveloped, and providing little evidence of efficacy (13). Another review of 44 studies summarized the effect of palliative care teams on patient and caregiver outcomes. Few studies reported the effect of palliative care intervention on caregiver well-being (14).

Current interventions for caregivers of patients in palliative care can be broadly categorized as 1) teaching new knowledge or skills (i.e., educational or training programs), 2) helping caregivers cope with the physical and emotional demands of providing care (i.e., support groups, counseling), 3) reducing the work of caregiving (i.e., respite), or 4) providing medical and psychosocial services (i.e., home care services) (13, 15, 16). While valuable, these interventions may not address a major source of caregiver distress—a loved one's suffering. Although clinicians would readily agree that patient suffering has a major impact on family caregivers, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. We believe these interventions could represent a new direction for palliative care intervention research (17). In support of our view, we will briefly discuss 1) the construct of suffering, 2) a conceptual framework to guide intervention design, 3) the implications of these interventions, and 4) directions for future work.

Suffering

Any discussion of suffering necessarily involves first characterizing the construct. It is important to clarify that although often perceived as equivalent, pain and suffering are not synonymous (18). Pain is “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”(19). Suffering is a much broader construct defined as a state of severe distress associated with events that threaten the intactness of the person as a complex physical, psychosocial, and spiritual being (20, 21).

The interplay between the three dimensions—physical, psychosocial, and spiritual -- helps to explain why people in pain may not perceive themselves as suffering and why people may be suffering in the absence of pain. For example, childbirth, while very painful, is usually a psychologically and spiritually uplifting experience and is rarely described as suffering. In contrast, a musician who loses use of his/her hand after a stroke may be suffering tremendously, even though he/she is not in pain, as the loss of function may be accompanied by an altered self-identity, a changed social role, and existential questions about the meaning of illness (22).

The multidimensional nature of suffering has been demonstrated in patients at end of life. For example, in a study of 92 hospice patients, pain and suffering were shown to be distinct constructs. Of the 27 patients who reported no pain, 21 (78%) reported some degree of suffering, often severe. Suffering because of loss of enjoyment of life and concerns for loved ones was especially severe. There was also little correlation between the physical, psychosocial, or spiritual dimensions, thereby demonstrating that each dimension makes a unique contribution to suffering (23).

Researchers interested in end-of-life care have been at the forefront in developing instruments to assess these dimensions of suffering. For example, Bruera and colleagues developed the Edmonton Symptom Assessment Scale (ESAS), a simple instrument that measures nine common symptoms in cancer patients (e.g., pain, tiredness, nausea, drowsiness, etc.) (24). Pain behavior checklists have been developed that allow the assessment of nonverbal (e.g., grimacing) and audible (e.g., groaning) expressions of pain (25). Numerous measures exist to assess psychosocial distress (26). In addition to traditional measures of mental health (e.g. depression and anxiety), these include measures of loneliness, frustration, and embarrassment (27). Finally, researchers have recently developed measures of spiritual well-being and despair (28, 29). These instruments, however, have rarely been administered in caregiver intervention studies.

Conceptual Framework

The conceptual framework we will use to frame our discussion is the stress process model. This model has been widely used to understand caregiver well-being and to guide intervention research (30, 31). The model has recently been advocated for use in palliative care research (32). According to the model, a host of variables including demographic and illness characteristics, social support, personality attributes, coping styles, and cultural beliefs help to explain the variability in caregiving outcomes (33). In the following section we will limit our discussion to two components of the model—stressors and appraisals (a person's subjective reactions to the stressors). Specifically, we will focus on patient suffering as a stressor for caregivers and the caregivers' appraisals of the suffering.

Patient Suffering as a Stressor

Although caregivers face a multitude of stressors (e.g., role adjustment, financial strain, end-of-life decision making, etc.), the stressors that have been most studied and linked most consistently to caregiver well-being are the patient's physical and cognitive disability and the subsequent tasks and responsibilities necessary to address his/her needs. In general, the greater the extent of the patient's disability, the greater the associated demands of caregiving, and the greater the negative impact on caregiver well-being (34). As a result, caregiver interventions are often geared to reducing the demands of caregiving caused by patient illness and disability.

Much less attention has been paid to patient suffering as a major source of stress for caregivers. The relationship between suffering in a loved one and distress in the perceiver is in part grounded in evolutionary biology; humans seem to be hardwired to experience the emotions of others (35, 36). Experimental studies have also shown that viewing faces with sad or happy expressions evoke similar feelings in the viewer. Stronger expressions evoke stronger emotions and the intensity of emotion is greatest when the individuals involved share a close bond (37).

Because they are heavily invested in their loved one's physical and emotional welfare, we would therefore expect caregivers to be particularly susceptible to experiencing their partner's emotions (38). Partial support for this idea is provided by several palliative care studies. For example, Miaskowski et al. found that caregivers of oncology patients with pain had more depression and anxiety than caregivers of patients without pain (39). In a study of home palliative care patients, patient pain was inversely correlated with the psychological well-being of their family caregivers (40). Numerous studies have shown strong associations between patients' and caregivers' emotional status (41). Finally, spiritual/existential distress in patients is also associated with similar distress in caregivers (42).

Appraisals

Appraisals play a critical role in caregiver well-being (43). When faced with caregiving demands, caregivers appraise whether the demands pose a threat and whether they have adequate resources to cope with them. To the extent that they feel unable to cope with caregiving demands, emotional/behavioral responses result, which in turn compromise the well-being of the caregiver.

The importance of a caregiver's appraisals of a loved one's suffering to the caregiver's well-being has been demonstrated in palliative care. For example, Schulz and colleagues used a large prospective sample of dementia patients to establish that the caregivers' perception of the patients' suffering contributes to depression and burden above and beyond the effects of the patient's cognitive and physical disability, disruptive behaviors, and time spent in caregiving. Furthermore, they showed that changes in perceived suffering were strongly associated with changes in caregiver depression and burden (44). In addition, caregivers generally appraise their loved one's suffering as greater than that reported by the patient. For example, Lobchuk and Vorauer explored the accuracy of family caregivers in judging patient symptom distress and found that caregivers tend to overestimate distress (45). Similar findings have been demonstrated in hospice patients and their caregivers (46). Studies also show that caregivers overestimate the degree of psychological symptoms more than they do physical symptoms (47). These discrepancies in appraisal of symptom severity are associated with greater caregiver stain (48).

Patient Suffering as a Target for Caregiver Interventions

The relationships between patient suffering, caregiver appraisals, and caregiver well-being lead us to conclude that patient suffering and caregiver appraisals could both be targets for intervention. For example, suffering remains common at end of life; the majority (70-100%) of seriously or terminally ill patients experience pain, approximately 25-50% are depressed, and 15% experience spiritual distress (49-51). Social isolation is also common (52). Given the relationship between patient suffering and caregiver well-being, it is reasonable to expect that, to the extent that these symptoms are successfully treated, caregiver well-being should improve. The impact of addressing patient suffering on caregiver well-being has not been rigorously tested, however.

Next, given the importance of appraisals to caregiver well-being, appraisals should also be targets for intervention. We would expect that caregivers who appraise their loved one's suffering as inevitable, overwhelming, and feel they can do little to alleviate it would experience more distress, whereas those who feel they can ameliorate the suffering should experience less. For example, research shows that the perception that pain is controllable is positively correlated with psychological well-being in caregivers (53). As such, educational or counseling interventions that help caregivers appraise their loved one's suffering as less threatening should be beneficial to the caregivers' well-being. In addition, even when little can be done to alleviate patient suffering, interventions should be designed to help minimize caregiver distress by enabling them to come to terms with the limits of their ability to control suffering.

There is evidence that interventions can help caregivers appraise the stressors of caregiving as less threatening. To date, however, these interventions have been designed to help caregivers appraise the demands of caregiving, rather than patient suffering, as less threatening. For example, McMillan et al. conducted a randomized controlled trial of a coping skills intervention for family caregivers of hospice patients with cancer. At the 30-day follow-up the intervention group had greater improvement in quality of life and less burden (54). In another randomized controlled trial for caregivers of patient in palliative care, caregivers who participated in a psychoeducational intervention reported a more positive caregiving experience (55). The lessons learned from these studies could be used to design interventions to help caregiver cope with a loved one's suffering.

Implications

There are several important implications to targeting patient suffering in order to improve caregiver well-being. First, because patient suffering and caregiver well-being are closely intertwined, interventions have the potential to reduce distress in both patient and caregiver. A recent meta-analysis of interventions for patients with chronic illness lends credence to the statement that patients and caregivers can simultaneously benefit from patient-centered interventions. The authors demonstrated that psychosocial interventions were more effective than usual care in alleviating patient depression when the spouse was included. The interventions also improved caregiver burden, depression, and anxiety (56). Second, the multidisciplinary nature of suffering provides several potential targets for intervention. The physical, psychosocial, or spiritual dimensions of patient suffering could be targeted, as could caregivers' appraisals of the suffering, depending on the specific circumstances involved. Interventions that target multiple sources of caregiver distress tend to generate larger effects than more narrowly focused interventions (57). Third, a major limitation of current interventions is that the interventions are often not acceptable to or are underutilized by caregivers. For example, in two studies that offered respite services to family caregivers at no or minimal cost, approximately half declined to participate (58, 59). Support groups and professional counseling are also often hampered by low participation and high attrition (60). Caregivers face many barriers (e.g. time constraints, conflicting demands, etc.) to participation in these services. Resistance to participation also reflects the fact that many caregivers are ambivalent about receiving support and perceive their needs as of secondary importance; caregivers often prefer to focus on their loved one's needs (61, 62). Targeting patient suffering can help overcome these obstacles; by putting the focus on the patient, they should be more accessible and acceptable to caregivers.

Future Directions

While it is important to note that caregivers are unique individuals with their own set of needs who are not mere extensions of the patient, we do believe that caregiver well-being is intricately related to their loved one's suffering. Although we suggest that caregiver well-being can be improved by interventions that relieve patient suffering, there remain unanswered questions. First, we have characterized patient suffering as a constellation of physical, psychosocial, and spiritual signs and symptoms. While symptoms are clearly an important component, they do not constitute the whole of suffering. For example, we know little about what contributes to suffering in patients, the variability in its display to caregivers, or to factors that contribute to accurate or inaccurate assessment of suffering by caregivers. In addition, we need to better understand moderating variables such as the level of contact, intimacy, and attachment between patient and caregiver that likely contribute to patient suffering and caregiver well-being. Because none of the existing symptom measures adequately characterizes the experience of patient suffering, development of such measures should be a priority. Second, there are unanswered questions about the dose and delivery of interventions. For example, a well designed, randomized controlled trial of a patient/caregiver symptom control intervention was not effective in improving caregiver mental health (63). The twenty-week, nurse-lead, cognitive behavioral-based intervention taught caregivers strategies on how to emotionally support the patient, facilitate communication, and address the strains associated with caregiving. Even though patients in the intervention group exhibited less symptomatology, the intervention was at best marginally effective in reducing caregiver depression. The investigators surmised that the intervention may have been too brief or was delivered to a sample already low in depressive symptomatology. In addition, more work needs to be done on the determining the optimal delivery mechanisms for these interventions. Telephone or videophone technology may be effective methods for overcoming some of the barriers to intervention delivery to caregivers in palliative care (64, 65). Third, most people in the United States now die from chronic illness which, in turn, gives rise to longer periods of uncertainty and anticipatory grief among family caregivers (66). Because anticipatory grief is heavily influenced by the patients' physical, psychosocial and spiritual distress and therefore varies during the caregiving trajectory, longitudinal studies are needed to determine the optimal timing of interventions (67, 68). Fourth, although we have focused on patient suffering as detrimental to caregiver well-being, there is a large body of literature demonstrating that suffering can actually lead to self-transcendence and personal growth in patients (69, 70). The relationship between such positive outcomes and caregiver well-being has rarely been studied. Finally, although the multidimensionality of suffering makes it an ideal target for intervention by palliative care specialists and palliative care teams, it should not be assumed that these professionals have the requite skills to do so. Poor communication by health professionals can exacerbate patient and caregiver distress at end of life (71). In addition, there may be some role uncertainty as to which health professionals should address which dimension of suffering (72).

Conclusion

Providing care to a loved one often comes at the expense of the caregivers' well-being. We believe that alleviating patient suffering—physical, psychosocial, or spiritual—can improve caregiver well-being. More research in this area could potentially lead to new and effective interventions for family caregivers of seriously or terminally ill patients.