MODEL	KEY CONCEPTS
Levels of loss (Weenolsen 1988)	Loss is experienced at five levels: • primary • secondary • holistic • self-conceptual • metaphorical
Ambiguous loss (Boss 2000)	Some losses are particularly difficult because they are uncertain, unclear or indeterminate; the lost loved one can be: • physically absent but psychologically present • physically present but psychologically absent
Disenfranchised loss (Doka 2002)	Some losses are not openly acknowledged or socially supported – specific types of relationships, losses, grievers, circumstances and ways of grieving are not socially recognised
Non-finite loss (Bruce & Schultz 2001)	Experiences such as disability, dementia, infertility involve loss that unfolds throughout the lifespan and involve awareness of the discrepancy between life’s events and ‘what should have been’
Chronic sorrow (Olshansky 1962, Burke et al 1992)	Some losses, particularly those related to disability, involve intense, pervasive and recurring sadness over a long period of time
Tasks of mourning (Worden 2001)	There are four tasks involved in the process of grieving: • to accept the reality of the loss • to work through the pain of grief • to adjust to an environment without the lost person/thing • to emotionally relocate the lost person/thing and move on with life
Continuing bonds (Klass et al 1996)	It is normal and important for grievers to maintain a continuing connection with the person/thing that is lost, rather than having to ‘let go’
Dual process model (Stroebe & Schut 1999)	The grief process involves loss-oriented work and restoration-oriented work and the oscillation and interaction between these two aspects of grieving
Complicated grief (Worden 2001, Middleton et al 1993)	Between 10% and 20% of grievers experience ongoing, problematic grief, often associated with factors such as the relationship to the lost person/thing, lack of preparation for the loss and lack of perceived support
Prolonged grief disorder (Prigerson et al 2008)	This classification of grief is being proposed for the DSM-V and emphasises the griever’s intrusive thoughts and persistent, disruptive yearning for the lost person

Defining loss

Loss, in one form or another, will affect all of us – whether we are patients or practitioners. Because loss is a universal experience, defining it may seem unnecessary. However, establishing a common description of loss is probably useful. Loss, write Harvey and Weber (1999 p 320), involves ‘a reduction in a person’s resources, whether personal, material, or symbolic, to which the person was emotionally attached’. Weenolsen (1988 p 19) succinctly defines loss as ‘anything that destroys some aspect, whether macroscopic or microscopic, of life and self’. Loss involves the separation from something – maybe large, maybe small – that has meaning to us and to which we feel strongly connected.

Types of loss

Given the above, the range of possible losses is almost limitless. How can we attempt to understand the diverse types of losses? Weenolsen (1988) proposes the following classification of losses:

• Major versus minor loss – We frequently focus on major losses, such as the death of a family member or the devastation of a bushfire. However, seemingly minor losses can have major significance. In keeping with her definition of loss, Weenolsen describes minor losses as ‘the many small deaths of life’ (1988 p 21) that can affect us profoundly because they represent larger losses. For example, older people can experience the termination of their driver’s licence as the loss of capabilities, mobility and independence, leading to a strong sense of grief.

• Primary versus secondary loss – While primary losses usually are identified easily, secondary, derivative losses may not be recognised and can be more painful. A major illness, such as chronic fatigue or heart disease, can lead to secondary losses of unemployment, significant financial loss, family stress and reduced life choices. Healthcare practitioners are challenged to recognise the range of secondary losses experienced by their patients in order to respond holistically to loss-related needs.

• Actual versus threatened loss – A loss need not actually occur for a grief response to be generated. Weenolsen notes that a threat to safety, self-identity or health can result in a sense of loss – ‘a biopsy may be negative but the self is not the same afterward’ (1988 p 22). Threatened loss is similar to Hockley’s (1985) description of deprivation loss, where grief is experienced for something one never had. Couples undergoing in vitro fertilisation treatment can experience a powerful sense of loss each time a treatment is unsuccessful, complicated by the prospect of childlessness that is threatened if a pregnancy never eventuates.

• Internal versus external loss – Weenolsen (1988) argues that all losses have an external and internal element. External losses frequently will involve the loss of an internalised self-ideal or societal ideal. This type of loss is common after such health-related experiences as mastectomy, amputation, acquired brain injury, burns or chemotherapy-related hair loss. These external losses can challenge the internalised social constructions about appearance, body image, beauty or gender, leading to potentially profound grief reactions.

• Chosen versus imposed loss – Losses can result from both chosen and imposed life events. For example, migration as a refugee is imposed by persecution or dislocation, leading to such major losses as family connections, freedom and financial security. However, choosing to migrate, while often involving positives such as new opportunities, also can involve associated grief. Those who migrate voluntarily can still experience a sense of loss of homeland, national identity, connections to their past, shared experiences with family ‘back home’ and continuity of cultural practices. Other life choices, such as to not marry or have children, can result in a strong sense of regret and grief about what ‘might have been’, even though the loss was chosen.

• Direct versus indirect loss – Weenolsen (1988) describes how loss can occur through the experiences of another person. She notes, for example, the grief that parents can experience through the losses affecting their children, such as serious illness, school difficulties, failed relationships or family problems.

Levels of loss

Weenolsen also describes five levels of loss, a framework that is particularly useful for understanding the full impact of loss situations:

• The primary level of loss – This level of loss is most evident and generally dominates people’s perception of a loss situation.

• The secondary level of loss – This level is about the derivative, concrete losses that follow directly from, usually with some immediacy after, a primary loss. For example, the primary loss of a diagnosis of childhood leukaemia can lead to such secondary losses as financial pressure due to medical expenses, work time lost due to demands of doctors’ appointments and disruption of school attendance and performance due to treatment side effects.

• The holistic level of loss – This level relates to the more abstract losses associated with primary and secondary losses, such as loss of future, dreams, status and security. Childhood leukaemia can result in the loss of hopes for one’s child, loss of safety as one’s child’s life is threatened and loss of family security as the future of a family member becomes uncertain.

• The self-conceptual level of loss – A primary loss can lead to changes in how one sees oneself as part of the self is perceived to be lost. A child with leukaemia may now see herself as ‘sick’, ‘different’, ‘less competent’ in school and a ‘burden’ on the family’s emotional and financial resources.

• The metaphorical level of loss – This level recognises the idiosyncratic meaning that a loss has, as one’s beliefs are challenged. A significant loss can lead to questioning of values, beliefs and one’s philosophical views. Childhood leukaemia, for example, may challenge assumptions that children will outlive their parents, that parents are able to protect their children from harm or that God will not allow children to suffer.

There are some important implications from Weenolsen’s five-level framework. As Weenolsen (1991 p 56) writes, acknowledging the levels ‘helps us understand better why loss affects us so deeply’. When we see patients who are grieving, we often witness intense and pervasive reactions. Awareness that they are grieving at several levels can help us make sense of these responses. Second, Weenolsen’s model demonstrates how grief ‘unfolds’ through the levels and is not static or one-dimensional. Third, this framework provides a guide for more comprehensive support and intervention with grieving people. The responses of helping professionals need to consider and address all levels of loss, rather than focus only on the primary loss.

Ambiguous loss

Ambiguous loss has been described as the most devastating of all losses in personal relationships due to the uncertain, unclear and indeterminate nature of the loss (Boss 2000). Boss describes two types of ambiguous loss. The first type occurs when a loved one is perceived as physically absent but psychologically present. Such loss relates to situations such as missing soldiers, lost or kidnapped children, family members separated by divorce and adoption. The second type of ambiguous loss is experienced when a loved one is perceived as physically present but psychologically absent. Health-related situations such as dementia, addictions, mental illnesses and head injury involve this type of ambiguous loss. The physically present–psychologically absent dilemma also occurs in palliative care if the dying person is treated by others as if he is already dead (social death) or if the patient lacks consciousness of existence (psychological death) (Kalish 1966 in Doka 2002, Sudnow 1967). Boss anticipates that, as medical advances keep dying patients alive longer, more families will experience the stress associated with ambiguous loss.

Lack of control makes coping with ambiguous loss so difficult. Five factors can interfere with coping:

• people are confused by the indefinite nature of the loss and become immobilised

• the uncertainty prevents adjustment and results in ‘frozen’ relationships with the ambiguously lost person

• the ambiguous loss is not recognised by the community, with little validation and no rituals

• ambiguous losses are more confronting, reminding people that life is not always rational or just (this reality can lead potential supports to withdraw)

• because ambiguous loss can be prolonged, those who experience it become physically and emotionally exhausted (Boss 2000).

To help people deal with ambiguous loss, Boss emphasises sharing information with families, including clinical and technical information. She states that ‘clinicians need to realize that by sharing knowledge they are empowering families to take control of their situation even when ambiguity exists’ (Boss 2000 p 23). In Bull’s (1998) study of Alzheimer’s families, respondents listed receiving information as the most helpful thing for dealing with dementia in the family. Information assists in constructing a reality amid the ambiguity. Meeting others who have experienced such a loss further increases a family’s information and support base.

Ambiguous loss also can be traumatising, with symptoms similar to post-traumatic stress disorder (PTSD) (Boss 2000). Like an experience of trauma (Herman 2001), ambiguous loss is outside the realm of usual human experience and often involves a threat to the life or physical safety of a loved one. Trauma often relates to a single traumatising event. However, ambiguous loss usually involves a series of psychological ups and downs, with hopes repeatedly dashed so that continuing to try to cope seems futile and learned helplessness can develop. Boss highlights the importance of allowing those experiencing ambiguous loss to tell their story, to receive validation and to have someone help them make sense of what they are experiencing.

Disenfranchised loss and grief

A concept that has significantly expanded awareness about the nature and impact of loss is disenfranchised grief. Kenneth Doka (1989 p 4) defined disenfranchised grief as ‘the grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported’. Losses are disenfranchised by the dominant societal norms or ‘rules’ that define acceptable feeling, thinking and spiritual expression when loss occurs (Doka 2002). Loss experiences that fall outside these rules are not recognised. Doka’s work has effectively integrated the psychological and the social elements of loss and grieving by acknowledging that the individual’s experience of grief is often affected by factors external to the griever.

Doka has proposed the following typology of losses that are disenfranchised:

• the relationship is not recognised – e.g. friends, ex-partners, professional helpers, internet relationships, gay partners, companion animals

• the loss is not acknowledged – e.g. abortion, miscarriage, infertility, secondary losses, non-death losses, loss of connection to land

• the griever is excluded – e.g. children, the aged, those with intellectual disabilities

• circumstances of the death – e.g. AIDS-related deaths, suicides, murders

• ways individuals grieve – e.g. different styles of grieving, cultural differences in grieving.

Health professionals should consider the concept of disenfranchised grief for several reasons. First, we have all been exposed to social norms about ‘acceptable’ loss and grieving and need to be aware of how these norms may influence our professional thinking and practices, possibly resulting in disenfranchising attitudes and behaviours. Second, as noted in Doka’s typology above, there are many health-related losses that are not acknowledged. For example, Corr (2002 p 43) maintains that ‘until quite recently and perhaps still today in many segments of society, perinatal deaths, losses associated with elective abortion, or losses of body parts have frequently been disenfranchised’.

Third, healthcare professions, by their nature, can sometimes contribute to disenfranchising processes. The primary focus of healthcare is necessarily on treatment, cure, rehabilitation and recovery. Losses may not fit within such a perspective as they may be perceived as healthcare ‘failures’. Our professional language may be disenfranchising. For example, an amputee rehabilitation setting may describe its work in terms of ‘replacement’ (through a prosthesis), ‘recovery of function’ (through physical and occupational therapies), ‘adjustment’ and ‘progress’. Such language may limit acknowledgement of the patient’s deep sense of bodily impairment, of frustration, of lost possibilities and hopes, of nothing ever being the same again. Similarly, the focus of health professionals is often on symptomatology. Corr argues that referring to grief symptoms disenfranchises grief by failing to recognise the essentially natural and healthy responses to loss found in many grieving behaviours. Speaking about the signs, manifestations or expressions of grief avoids disenfranchising and even pathologising the wide range of appropriate responses to loss (Corr 2002).

Last, the grief of health professionals may be disenfranchised. Such professionals may not be considered as ‘legitimate’ grievers when, for example, a patient dies. The health professional–patient relationship may not be recognised as one in which the helper’s grief is appropriate. Indeed the concept of ‘being a professional’ often promotes emotional distance between the helper and the patient resulting in professionals potentially disenfranchising their own grief. For example, after a patient has died nurses are often expected to carry out protocols for managing a dead body and preparing the deceased patient’s bed as quickly as possible for the next admission. Frequently little recognition is given by the hospital system, by senior staff and by the nurses themselves to the nurse as a griever.

Nonfinite loss and chronic sorrow

Another concept of particular relevance to the field of healthcare is nonfinite loss. Bruce and Schultz (2001) developed this term through their clinical and research encounters with families of children with developmental disabilities. They recognised that these parents experienced ongoing loss and grief as the impact of their child’s disability unfolded throughout the lifespan. Nonfinite loss is contingent on three elements: lifestage development, passage of time and a lack of synchrony between lived experience and hopes and expectations. The loss is often not identified or named until the person reflects back and realises what did not happen in life in comparison to ‘what should have been’ (Bruce & Schultz 2001 p 8).

Nonfinite loss has been associated with situations such as: congenital or acquired disabilities; traumatic injury; ongoing or degenerative illnesses such as dementia; adoption; infertility; separation and divorce; and sexual abuse. These experiences can challenge, even shatter, preconceived ideas of what the world should be like, leading to ongoing, nonfinite loss and grief (Bruce & Schultz 2001). Parents of a child with a disability can be repeatedly reminded of what their child has not been able to achieve in comparison to the hopes and dreams they had for that child. Indeed, Bruce (2000) reported that approximately 20% of mothers experience symptoms of PTSD after the birth of a child with a disability and that their grief is often disenfranchised. Five cycles of nonfinite grief can be experienced, involving themes of shock, protest/demand, defiance, resignation/despair and integration (Bruce & Schultz 2001). The nonfinite nature of the grieving means these cycles recur: ‘The cycles are not linear, have no end-point and are prone to recycling again and again’ (Bruce & Schultz 2001 p 163).

Similar to nonfinite loss and grief is chronic sorrow. Olshansky (1962) first described chronic sorrow as the intense, pervasive and recurring sadness observed in parents of children with an intellectual disability. Other studies have examined chronic sorrow among parents of premature infants (Fraley 1986), parents of children with both physical and intellectual disabilities (Kratochwil & Devereux 1988, Damrosch & Perry 1989) and mothers of children with spina bifida (Burke 1989). Chronic sorrow, while often continuing through one’s life, is considered ‘a normal reaction to the significant loss of normality in the affected individual or the caregiver’ (Burke et al 1992 p 232). Burke et al, writing from a nursing perspective, argue that it is important to recognise the difference between the normality of chronic sorrow and complicated grief or depression. This caution is an important one for health professionals whose culture characteristically seeks to diagnose and treat pathology. Many patients and families with long-term illnesses will be experiencing nonfinite loss and chronic sorrow (e.g. see Kelley’s (1998) discussion regarding loss and chronic pain). By missing or mislabelling their patients’ grief, health professionals run the risk of disenfranchising patients’ losses or responding inappropriately. Chronic sorrow is best treated through recognition of the family’s recurrent experiences of grief and supportive responses to their sadness.

Responses to loss

Since Freud’s early writing about grief, professionals have been trying to understand how people respond to loss. Freud’s notion that mourning occurred over a period of time has been accepted and this time element of mourning has been described as the grief process.

The grief process

The grief process has been conceptualised in various ways. One approach has been to identify phases or stages in grieving. Erich Lindemann (1944), a pioneer in the study of grief, outlined three phases in the grief process: emancipation from bondage to the deceased, readjustment to the environment without the deceased and the formation of new relationships. Parkes (1972, 1988) and later Bowlby (1980) referred to four phases associated with grieving – numbness, yearning to recover the lost person, disorganisation and despair and reorganisation. Sanders’s (1999) model proposed five phases in the mourning process: shock, awareness of loss, conservation-withdrawal, healing and renewal. In her work with terminally ill patients, Kübler-Ross (1969) identified five psychological stages in the dying process. Her staged model of denial, anger, bargaining, depression and acceptance has been used to describe the grieving process. However, Kübler-Ross’s work was not intended to describe mourning and has limitations as a grief model (Corr 1993, Worden 2001).

The phase/stage view of grief has been criticised for inferring that the grieving process is essentially passive. Attig (1991 p 386) argues that the phase/stage concept frames ‘grieving as yet another thing that happens to bereaved persons, a process into which they are thrust against their will … (with) little choice of paths through the process’. Attig also cautions against any medical conceptualisations of grief, as these too imply that grief is a kind of illness that happens to people and over which people have no choice once a major bereavement occurs. Instead, Attig sees grieving as an active process through which the griever relearns their world.

Tasks of mourning

Psychologist William Worden also argued for a more active view of grieving and developed a widely accepted task model of mourning. Worden (2001) states that a task model fits better with the concept of ‘grief work’ as described by Freud and Lindemann; that is, grievers need to act to move through the grief process. The task model is also seen as consistent with the psychological concept of developmental tasks associated with all human growth. Finally, Worden sees the task model as more useful for practitioners, as ‘the approach implies that mourning can be influenced by intervention from the outside’ (2001 p 26). Both the griever and the helping professional can approach their grief-related work with a greater sense of agency and mastery. Indeed, in my own grief-related practice, I frequently use the terms ‘grieving’ (rather than ‘grief’) and ‘work’ with clients to communicate the active process in which I see them engaging and to acknowledge the often intense effort (work) that they expend in doing their grieving.

Worden’s four tasks of mourning set out specific foci for grievers’ actions:

1. To accept the reality of the loss. ‘The first task of grieving is to come full face with the reality that the person is dead, that the person is gone and will not return’ (Worden 2001 p 27). This task addresses the numbness, shock and denial noted in phase models. Denial most often involves the facts of the loss, the meaning of the loss or the irreversibility of the loss. Full denial of a loss may be rare but degrees of denial are not uncommon. As a recognised defence mechanism (Goldstein 1995), denial serves to protect us from the anxiety that may overwhelm us. So we face experiences in smaller parts to deal with what we feel ready to face. Sometimes grievers are described by others as ‘being in denial’; health professionals should be aware of not doing this in a way that is dismissive or disenfranshising of patients’ or families’ grief. Funerals and other rituals are useful in providing structure and procedures for gradually facing the reality of a loss. Worden states that both intellectual and emotional acceptance of a loss is necessary; less experienced practitioners can overlook emotional acceptance. This task is more difficult for grievers who have experienced a sudden, unexpected death, especially if the body is not seen. If Weenolsen’s levels of loss are also considered, the complexity of this task is further evident. As the levels of loss unfold, the reality of the loss keeps changing, requiring this task to be revisited.

2. To work through the pain of grief. Sadness, guilt, anger, loneliness and depressive feelings are often involved in grieving. The intensity of grievers’ emotional pain can go beyond what they have previously experienced and they may wonder if they are ‘going crazy’. Because experiencing intense grief pain is so difficult, some people will try to avoid working on this task through stopping painful thoughts, numbing feelings through alcohol or drugs, distracting oneself through work or other activities, or evading painful thoughts and feelings by the ‘geographic cure’ of moving from place to place (Worden 2001 p 31). Some people are afraid of ‘breaking down’, stating ‘If I allow myself to start feeling (e.g. crying), I’m afraid I will never stop!’. McKissock and McKissock (2006) also describe the ‘pharmacological’ effects of major loss, as the griever’s biochemistry works to numb the immediate emotional reactions. Further emotional distress can be experienced as the numbing wears off in the weeks following the loss. Family and friends do not like to see their loved ones hurting and may feel helpless about how to respond. As a result, they (and helping professionals) can do or say things that give the message ‘We don’t really want to see your pain’. This is one way that grief responses can be disenfranchised, as discussed above.

3. To adjust to an environment in which the lost person/thing is missing. Worden (2001) identifies three types of adjustment: external adjustments, internal adjustments and spiritual adjustments. External adjustments refer to the many functional changes that occur after the death of a loved one. New skills, roles and knowledge – such as cooking meals, driving the family car, parenting without a partner or managing finances – have to be developed. This process can be a challenge both practically and emotionally as many grievers find their energy levels low, their cognitive abilities taxed and their willingness to face more change limited. Internal adjustments relate to changes in the griever’s sense of self. These adjustments often will depend on the nature of the relationship and the attachment with the lost person/thing. For example, a relationship that is highly dependent (i.e. one person depends on another to meet their own needs) can lead to significant internal adjustment difficulties. Loss could activate latent self-images (Horowitz et al 1980). Such self-images may be negative, for example, for a woman who experienced childhood sexual abuse before finding some security in the marriage with her now-deceased husband. Alternatively, reactivated self-images may be positive, for example, for a woman who can now pursue career goals that her husband discouraged. Spiritual adjustments involve making sense of or finding meaning in the loss, similar to Weenolsen’s idiosyncratic loss discussed above. Basic assumptions such as ‘the world is a good place’, ‘the world makes sense’ and ‘I am a worthy person’ can be replaced by ideas that ‘the world sucks!’, ‘life is not fair!’ and ‘I must have done something bad for this to happen!’ (Janoff-Bulman 1992, Worden 2001).

< div class='tao-gold-member'>

Only gold members can continue reading. Log In or Register to continue