Approaches to grief for bereaved family members are an important focus of theoretical, empirical, and clinical work in palliative care. However, it is essential also to focus on the experiences of the dying person as losses occur in health, physical and mental function, and social roles and responsibilities. A conceptual framework for how a person adapts to losses can provide a road map for how to intervene effectively in palliative care. We therefore describe a reintegration model that includes comprehension, creative adaptation, and reintegration processes for adapting to losses at the end of life. We describe adjustment processes from both the perspectives of the dying person and the bereaved survivor. For each, we consider the implications of adjustment processes for the palliative care team and for families and others with significant relationships. We provide examples of how caregivers can use knowledge of adjustment processes to provide focused interventions aimed at improving decision making and the quality of care at the end of life ( Table 18-1 ).
| Process | Patient Experience | Key Activities of Palliative Care Team |
|---|---|---|
| Comprehension | ||
| Realize the loss | Shock, numbness, sadness, anxiety | Empathic listening |
| Awareness of the loss | Verbal and nonverbal support | |
| Discussion of the practical consequences of the loss | ||
| Uncertain goals and values | Avoidance of premature decision making | |
| Creative adaptation | ||
| Explore ways of living without what was lost | Ambivalence, mixed emotions | Discussion of alternatives for living |
| Exploration and experimentation through action and imagination with new or alternate ways of living without what was lost | Support for efforts to try adaptive behaviors | |
| Changing values, goals, preferences | Tolerance for changing emotions and ambivalence | |
| Support for distress | ||
| Life review and legacy building | Values clarification, if decisions need to be made | |
| Education for family members and significant others | ||
| Reintegration | ||
| Consolidate revised self-concept and view of life without what was lost | Emotional equilibrium | Encouragement and support for revised self-concept and new ways of living |
| Consolidation of revised self-concept and new ways of living | ||
| Stable values, goals, preferences | Reevaluation of decisions for care made during comprehension and creative adaptation |
Brief Overview of Adaptive Processes
News about a terminal prognosis, the experience of functional decline, and an acute health crisis are among the losses commonly experienced by persons approaching the end of life. Significant others may experience the same news and events as losses, and they also experience the death, the funeral, and other rituals and face continuing in life without the deceased. For both it is often a time of multiple accumulating losses interspersed with periods of recovery and gains in strength and stability, followed by further loss.
Losses that occur close to the end of life can precipitate great distress. Yet these losses have the potential to stimulate psychological growth. For both the person who is close to the end of life and the survivor, these experiences can provide opportunities to resolve conflict in relationships, heighten spiritual awareness, and offer new perspectives on living. In the following section we describe adjustment processes, comprehension, creative adaptation, and reintegration from the perspectives of the dying person and the bereaved survivor. We present a conceptual framework, termed the reintegration model, to understand the adjustment processes of the dying person, and we consider relevant conceptual and empirical research on bereavement. For each, we discuss implications for palliative care.
Losses for the Dying Person
The trajectory to death differs according to the type of illness or injury. For some patients, the path involves a rapid decline to death; others experience a series of acute crises followed by periods of relatively stable health; still others see a slow deterioration in function and well-being. Adjustment to the losses that occur along any of these trajectories begins when the dying person becomes aware of limitations in function, well-being, and life. Awareness of end-of-life loss can occur when a person observes an acute, noticeable deterioration in function or compares a gradual decline with a previous higher level of health. This awareness can also occur when a person receives news of a terminal prognosis from clinicians or a referral to hospice care. A significant characteristic of many end-of-life losses is that they are irreversible; the person will not recover the previous level of function or well-being. A related characteristic is that many losses close to the end of life are associated with awareness of impending death.
When a person becomes aware of an end-of-life loss, adjustment occurs across several domains. A person may adjust physically, as when a walker is used to compensate for weakness in the legs or unsteady gait. Other adjustments may be psychological, social, or spiritual. For example, a person who is unable to work because of advanced pulmonary disease may focus greater attention on those close relationships with family and friends. With the loss of work, self-concept may shift from an emphasis on oneself as a worker to views of oneself in other roles such as friend, partner, or parent. Purpose in life may be realized through one’s relationships with family, humanity, nature, or a higher power rather than through contributions at work. With greater awareness of impending death, meaning may be found through leaving one’s legacy to loved ones, through considering beliefs about what happens after death, and through awareness of spiritual connections. These physical, psychological, social, and existential or spiritual domains are consistent with those that Cicely Saunders identified some three decades ago at the outset of the hospice movement, and they have been incorporated into contemporary conceptual models of palliative care. We describe three processes—comprehension, creative adaptation, and reintegration—that occur across these four domains as people adjust to losses at the end of life, and we discuss how palliative care professionals can use understanding of these processes to improve end-of-life care.
Comprehension
Theories of coping with stress postulate that an appraisal process occurs after the onset of stress. Appraisal serves to evaluate the characteristics of the stressful situation and to assess the resources one has to cope with it. Similarly, when a person observes deterioration in health and function or receives “bad news” in terms of prognosis, we suggest that he or she engage in a process of comprehension that identifies the experience as an irreversible loss. To adapt to functional decline, a person has to interpret diminishing abilities as an irreversible loss. Some losses may be so gradual that they are not interpreted as such. Other losses may appear temporary. For example, a fall and a fractured hip may be interpreted as a short-term setback in life. Conversely, if this injury signifies a sequence of losses leading to death, the comprehension process for irreversible loss may be initiated.
The emotional experience associated with comprehension includes shock, numbness, sadness, and anxiety. However, it is possible for a person to experience a range of positive responses as well as negative affect. For example, a person may feel relieved when the loss eliminates responsibility that is no longer manageable. Anger, sadness, relief, and regret may represent the range of emotion for a frail elderly man who has been struggling for several years to maintain independent living when a fall and broken hip result in a transition to long-term care. Regardless of the emotion, during comprehension, the loss itself is highly salient cognitively and behaviors are directed toward determining that a loss has occurred (e.g., asking questions about prognosis, requesting information about what to expect in the future). Recognition of what will be missed and evaluation of the importance of what is lost to the person’s identity, in turn, disrupt equilibrium across the core domains. For example, a loss in the physical domain, such as in congestive heart failure, initiates activity in the psychological domain about what this means in terms of ability to work or care for oneself, the ability to think of oneself as an independent person, the need for assistance from others, the relevance of the health prognoses of family members, and the meaning of heart disease in terms of one’s religious or spiritual beliefs. These psychological activities contribute to further disruption in the social and existential domains. Especially when a loss is realized suddenly and is central to a person’s self-concept, comprehension may be associated with acute stress responses in the physical domain. In addition, because of the effort needed to process the loss, a person may appear to be self-focused, having little energy for other people and low capacity for making decisions about care and living situations.
For seriously ill people, comprehending loss may be made more difficult by cognitive impairment related to medications or disease. Similarly, comprehension cannot be expected to occur if caregivers withhold prognostic news. In addition, the type of loss is an important factor that influences the comprehension process. Losses associated with shame or stigma may be particularly difficult to process emotionally. For example, in many Western cultures where people take pride in independence, shame associated with becoming more dependent on others (e.g., needing assistance with dressing, bathing, and toileting) may make it difficult for a person to experience fully his or her feelings about the loss of independence, and therefore to engage in comprehension processes.
Palliative care clinicians can support the person by allowing the time and space for comprehension processes to occur. Clinicians can expect that the person who has experienced the loss may have many and repeated questions about what has happened and what it means for life and living. Clinicians can provide opportunities for the person to think about the loss, to discuss his or her perception of the news, to ask questions about what the loss means in practical terms, and to confer with significant others. The onset of a loss often becomes a time when health care decisions need to be made about a new treatment approach or the start of hospice care. The person who is in the process of understanding the loss and what it means may not have the cognitive capacity to evaluate alternatives and to make informed choices at this time. It may be useful for the clinician to allow comprehension to occur before engaging the person in clinical decision making. If a decision about care or living arrangements cannot be delayed, then it may be important to provide additional support to the person by involving significant others, focusing attention on most likely alternatives, and allowing the person to reevaluate the decision once he or she fully comprehends the loss and its implications.
Creative Adaptation
Once a loss is comprehended as something that cannot be restored completely, a person begins a transition to living without what has been lost. We term this process creative adaptation. The person may experiment, through action and imagination, with new ways of thinking about oneself and living without what has been lost. New relationships may be formed, or new ways of interacting and being in existing relationships may occur. For example, a person who has fatigue and functional decline that affects mobility may develop alternate means of maintaining important social relationships. The case study in Box 18-1 illustrates the processes of adaptation.
B. G. was a 58-year-old man who lived alone and started therapy for metastatic malignant melanoma, but he found that he did not have the energy, attention, or concentration to work full time in his job as a vice president of a publishing company. He scaled back his responsibilities and, with some difficulty, continued in his position. Although his part-time work schedule allowed him greater time to rest, he was no longer included in the decision making of the inner management of the firm. B. G. found this highly discouraging and told his doctors that he was considering ending therapy early, before he had received the recommended dose. His doctor listened to him express his frustration and his desire to discontinue treatment. They discussed options and described what they thought were the advantages and disadvantages of each. After serious consideration of the alternatives, B. G. decided to continue on his current course. He felt that his physician understood his situation and supported him in considering the possible options fully.
When his disease progressed following his initial treatment, B. G. started an alternate treatment course and left his position at the publishing company. At this time, B. G. was aware that his prognosis was poor and that he was not expected to live beyond the year. Most of his social relationships were with coworkers at his firm, and his few family members lived at some distance away. He felt lonely and dispirited on days at home, and as he thought about dying, he ruminated about what he had not been able to accomplish in his life. Initially, he attended a support group at his hospital, and although this offered connections to others, he missed the sense of importance that he had always found in his work. After a call from an old friend with whom he had lost touch, he started writing letters that reestablished closeness with friends he had not seen in more than a decade. The friends who knew B. G. before his success as a publisher reminded him of the many ways in which his life had mattered to them. Through the letters, he became engaged in telling his story, and he often illustrated his letters with line drawings and watercolors, activities that he had always enjoyed and that he could do even with reduced concentration. The renewed means of self-expression and his reaching out to others became a way that B. G. reestablished self-worth and identity apart from work roles and contributions. As B. G. reflected on his life, he was able to think of himself as someone who had made a difference to his friends and family. He came to think of his letters as part of his legacy.
B. G.’s experience illustrates the creative adaptation process, which for him started with losses in his ability to work, and depicts the exploration of alternative ways of living and finding meaning that are characteristic of this process. As shown in this example, creative adaptation may involve struggles to maintain earlier roles and activities and unsuccessful attempts to find new ways of coping. At times, the struggle to find ways of coping with loss may result in conflict with others. In this example, the clinician caring for B. G. was able to avoid conflict by supporting B. G. in an exploration of what it could mean to discontinue treatment. For B. G., the creative adaptation process ultimately contributed to revisions in his self-concept that incorporated a past-tense view of himself in a specific job and reaffirmed a broader image of himself as a writer and friend.
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