Understanding Processes Of Loss And Change

Much of patients' and families' experience of living with advanced cancer can be understood as coming to terms with a series of losses. These losses may be related to many aspects of a person's life, for example, their functional ability such as to walk unaided, to talk, and to be continent. In some types of cancer, such as cerebral tumors or those with cerebral metastasis, intellectual function may be compromised or lost and emotional expression may be blunted or emotional control may be lost. Arguably advanced illness is associated with a cascade of losses for both the ill person and their family members. Moreover, with open communication about the probable outcome of disease and greater awareness of prognosis, people in these situations may start to anticipate a series of losses that they have yet to experience. This has been described as anticipatory grief45 and can be experienced by both the person with cancer as they contemplate their demise and by family members who fear the death of their loved one but also have to face a continuing life without their presence. It has been argued that when life-threatening illness is very protracted, especially if the ill person loses the capacity to communicate and relate socially, family members may start to withdraw from the ill person before their death. Sudnow18 described the phenomenon of social death where in certain cases, there was a loss of personhood and the dying person was treated as if they were already dead. An ethnographic study conducted in an in-patient hospice in England described the situation of patients who had severe and deteriorating cancer.28 For example, one patient was living with what for her was an intolerable situation, a recto-vaginal fistula that produced uncontrollable leakage of faecal material. The odor was so bad that her husband and even the staff found it difficult to remain in her room. The patient herself requested sedation until death to make her unaware of her situation. Lawton argued that in this case social death was the preferred option of the patient and those around her.28 Now there are many things that can be attempted that can improve the management of these stressors by directly altering the sources of stress such as alternative surgical appliances.

There are a number of competing theoretical accounts of loss, change and coping which are worthwhile reviewing briefly in the context of living with advanced cancer. While these theories are usually applied to the irrevocable loss of bereavement they are applicable to understanding other life transitions and losses.46 These theories fall into three conceptual groups dependent upon their major emphasis: intrapsychic processing, transactional approaches, and social models of loss. Perhaps the most dominant influence on clinical practice are models derived from psychodynamic psychology and psychiatry. These emphasize intrapsychic processing especially the cognitive and emotional aspects of managing loss. These theories can be traced to the early ideas of Freud47 and his notion of "grief work" and the proposal of sequential stages or phases in adaptation to loss. This was developed by the British psychiatrist John Bowlby48-50 into an account to explain mother and infant attachment behaviors and the effects of separation on the infant. Similar ideas can be traced to the phase models of Parkes51 which he developed to explain bereavement outcomes and to Kubler Ross52 who described emotional transitions in people who were aware of their dying status. Parkes51 argued that major changes, like bereavement, challenged the assumptive world and it was this disruption to taken-for-granted ways of managing everyday life that was difficult to cope with. It may also explain the profound impact that threats such as a cancer diagnosis have on psychological equilibrium. These ways of construing loss have been heavily critiqued over the years because they make assumptions that responding to loss can be conceptualized as a series of sequential stages, that focuses on emotional aspects of loss and largely ignores the social aspects (see Payne et al.46 for a more detailed critique).

An alternative way of conceptualizing loss is derived from cognitive psychology especially the transactional model of stress and coping.53 This model proposes that any event may be perceived as threatening by an individual, and it is the meaning of the event for each individual that determines its stressfulness. The authors suggested that each event was thought about (called cognitive appraisal) to estimate its degree of threat (primary appraisal) and to determine and mobilize resources to cope with it (secondary appraisal). Coping may focus on dealing with the threat directly or may emphasize the emotional response. These different ways to respond are called "problem focused" and "emotion focused" coping. Once again these processes of coping with loss are conceptualized within a largely individual framework of autonomous appraisals and coping responses and takes little account of the social context, availability of resources or social relationships in which they are situated.

Sociological perspectives on loss have emphasized the social meanings attributed by societies to different types of losses. Based on extensive research in North America, Klass et al.54 have challenged notions that successful resolution of loss involves "moving on" and "letting go" which have been fundamental aspects of many loss therapies (e.g., Worden55). It is argued that for many people adapting to loss involved incorporating some aspect of their previous relationship with the deceased person into their current lives but in a way that was tolerable and was not distressing. Tony Walter56 a sociologist working in the UK, developed a similar theory in relation to the loss of a deceased person. He suggested that the creation of a durable biography in the form of a narrative which describes both the person who has died and the part they play in others lives was a functional and therapeutic way to cope with loss. A recent review of research on the "continuing" versus "breaking" bonds controversy has failed to establish which is most adaptive.57 Research investigating these different approaches to coping with loss would enlighten future management and even prevention of some of the negative aspects of this complex phenomenon.

This leads on to considering the more positive aspects of living with advanced cancer which have been under represented in the research literature. What allows some cancer patients to cope so well with survival? The individual difference literature acknowledges the role of personality attributes such as hardiness and resilience.58 Yet there is still much that it not known about well-being which is likely to be more than merely the absence of psychopathology. In a theory of hope in situations involving pain, loss and suffering, hope was defined as a combination of a determination to achieve a desired goal or end point and a plan for getting there.59 When pain, illness, disability or any loss occurs, previously valued goals may seem or may actually be unattainable. This can precipitate hopelessness, bring acceptance or promote determination. People who demonstrate flexibility and willingness to modify or change some of their original goals, are most likely to remain hopeful. Snyder59 argues that resourceful people have a number of goals in different areas of their lives and show an ability to substitute goals that are achievable for those that become unattainable. Interventions that help cancer patients to reappraise their goals one-step-at-a-time when faced with overwhelming challenges are likely to be supportive. The positive aspects of living with advanced cancer may include refram-ing life goals, reappraising priorities and focusing on new or previously undervalued activities. This may relate to important relationships, employment or voluntary endeavors or creative ventures. There may be the sense of seeing the world afresh and a new with more intense valuing of things like the natural world or personal faith.

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