Chapter 10. Living with Loss and Grief
Cynthia Schultz and Elizabeth Bruce
This chapter:
■ demonstrates that loss is an integral part of life;
■ describes the impact of loss on individuals in general and, more specifically, those with a chronic condition;
■ illustrates how loss can impinge on the family unit;
■ encourages reflection on the personal experience of loss;
■ defines griefwork and exposes myths about grieving;
■ describes the factors influencing individual differences in grieving; and
■ presents guidelines for the effective support of those persons who are living with loss and grief, including anticipation of and preparation for, death and dying.
The experience of loss is an inevitable part of life and all significant losses result in grief. Not only do nurses live through their own losses and grief, but often grieve alongside their patients and their families. In an Australian study exploring nurses’ perceptions of critical incidents, O’Connor & Jeavons (2003) reported that the nine most stressful incidents for nurses, rated by the sample, were those related to grief. We define grief as the universal and instinctive response to loss, marked by psychological and physical suffering and distress. While grief is a response common to us all, it is also a very individual and personal experience, differing in how it is displayed, and in intensity, impact, and duration. This chapter begins with an examination of loss in life, before delving into its associate—grief. Nerida’s story illustrates the impact of loss and grief caused by chronic conditions, such as illness or accident trauma, on the individual and the family. Throughout this chapter, the need for nurses to reflect on personal experiences, as an important step towards understanding and supporting the loss and grief of others, is emphasised. The final section is designed to assist readers to apply loss and grief theories to clinical practice. This section aims to help nurses meet the personal challenges facing them as well as those in their care.
Nerida’s story illustrates not only her loss of health, but the associated and subsequent losses and grief experienced by herself, her sister, and her parents. It also illustrates how important it is that the intensity of grief be lessened through acknowledgment and full expression. To fail to allow this opportunity is to invite unspoken sorrow, described so evocatively by Shakespeare (cited in Craig 1943 p 865):
… the grief that does not speak knits up the overwrought heart and bids it break.
Nerida was diagnosed with diabetes when she was 5 years of age. At that early age, she could barely begin to contemplate what this diagnosis would mean to her life. But as the years passed, Nerida came to realise more and more just what the diagnosis could mean—loss of a carefree, medication-free existence; missing out on occasions and activities that her sister and her peers enjoyed; being treated as different by her parents, teachers, acquaintances, and thereby losing her sense of normalcy. Also there was the fear and the dread she had sensed early on. This sense had embedded itself in her subconscious thoughts, when as a little girl she had played, sat, and now and then heard her name mentioned during meetings between her parents and the doctors. Her attention hooked onto three words: she could die. How could she have faith in herself or her body, if death was hovering around the corner?
Now 21 years of age, these words and fear of death have retained their drama and have become even more real. She remains terrified of dying, bitterly resentful of being different, of being deemed irresponsible when she does not watch her levels and is rushed to hospital. All her young life, she has been cut off from expressing her grief and her fears, cut off from talking about an intrinsic part of her emotional and physical life. Her grief became submerged by her fears. As a kind of camouflage, her fear and bitterness have been expressed in brazen and cynical behaviour, lashing out at others—especially the nurses and doctors who tend to her during hospitalisation.
Loss unlimited
Nerida’s most obvious loss has been loss of health, but loss occurs in many other forms, many of them not so obvious. One of the most thorough illustrations known to us of the broad spectrum of loss experiences is to be found in the work of Schneider (1984, pp 25–42). He presented more than 70 examples of loss across the lifespan, categorising them as apparent losses, loss as part of change and growth, and competence-related losses.
Examples of apparent losses are:
• loss of relationships through the death of a loved one and/or illness;
• loss of external objects through theft, destruction, disappearance;
• loss of health, youth; and
• environmental loss such as natural disasters, vandalism.
Loss as part of change might be due to:
• divorce, role reversal, breakdown of a relationship;
• moving house, leaving familiar surroundings; and
• changing jobs, retirement.
Unnoticed losses include:
• birth of a child (much joy, but change in lifestyle);
• promotion (cause for celebration, but loss of previous patterns and relationships); and
• shattering of assumptions about fairness, immortality, control.
Schneider (1984) argued that any change has the potential for loss, even those changes which might usually be considered positive in nature. For instance, as a nurse you may at times witness the mixed feelings of patients or clients for whom therapy is about to be terminated due to full recovery. Those persons rejoice over recovery, but may well experience stress and anxiety over the prospect of losing the specialised care and close contact with professional carers to which they have become accustomed, and felt entitled to receive, over an extended period of time.
Finding out about what a change or transition can mean to a patient leads us closer to understanding the conflict between feelings of ambiguity and the range of emotions that can accompany change. Consider the losses that Nerida has experienced. Apart from the obvious loss of health, she has also lost a sense of trust in her body. She has missed out on so much of what her peers take for granted. She feels alienated, isolated, fearful, and outside the mainstream.
A broad understanding of loss as the trigger for grief is of great importance for nurses. Not only does it alert us to what may be a covert element in the suffering of those in our care; it also provides perspectives for becoming more acutely aware of the impact of loss in life and our own attitudes, thoughts, feelings, and behavioural responses in our personal encounters with loss and grief, death and dying.
Among the most difficult tasks we are all likely to face in life is handling loss—our own personal losses and helping those people we care for who suffer losses. The difficulty lies not only in attending to the upheaval and practicalities occasioned by the loss event but also in managing the emotional pain precipitated by the loss. Difficulties are further compounded when, for instance, the loss is related to a slowly manifesting condition that often involves adjustment to a different body image, or to the loss of hopes and dreams due to, say, infertility, relationship breakdown, or miscarriage; that is, when the loss is non-finite.
Non-finite loss
Pause for a moment to contemplate the loss and grief associated with the following sample of scenarios found in the literature. They may be situations with which you identify on a personal level—loss of a limb (Kenny & Schultz 1993); stillbirth (Lewis & Page 1978); relinquishment of a child through adoption (Condon 1986, Winkler & van Keppel 1984); or elective abortion (Peppers & Knapp 1980). Perhaps, like Nerida, you have had your life complicated by a chronic illness from childhood. Possibly you are acquainted with losses that parallel the process of human growth and development (Schneider 1984, Sullender 1985), or the loss of shared paths, dreams, and wishes that are an integral part of development, as Carol Shields described (1997, p 131):
To get better. To live. To grow up. To be like everyone else. Isn’t that what we all want in the end?
These are but a few examples of what we have defined as non-finite loss. We coined the term non-finite loss to refer to those losses for which there is no clearly marked conclusion; so that the extent of loss becomes more apparent with the passage of time, shattering our hopes and wishes for the future, our ideals and expectations.
There is a strong theoretical basis for our conceptualisation of non-finite loss in the literature (Berger & Luckmann 1966, Bowlby 1980, Freud 1917, Horowitz 1983, 1988, 1990, Marris 1986, Olshansky 1962, Parkes 1972, 1986, Rochlin 1965). Non-finite loss is an umbrella term for many situations in life, affecting young and old alike. Who then might experience non-finite loss? The answer is anyone who experiences the irrevocable loss of that which plays a central role in who they perceive themselves to be. Recurrent grief throughout life about a loss—be it a person, wish, goal, health—identifies the loss as non-finite.
Nerida’s loss is non-finite in nature—it is enduring and evolutionary. Her diabetes is incurable. During her life, its meaning and significance has slowly evolved. The part that her illness has played and will play in her life is revealed only over time, with each stage of cognitive and socioemotional development adding breadth to the meaning of this condition. She needs to be allowed to reflect on the non-finite nature of her loss, the trauma it had involved for a 5-year-old, and how she is going to blend it into her present world and be able to communicate her situation to the people she meets. Given appropriate support, this is achievable. Family, friends, and professionals face the challenge of helping her give words to all the isolation and fears that she has been harbouring. Nerida’s parents have also experienced non-finite loss.
When Nerida was diagnosed with diabetes, her parents were shocked and distressed. They were both well educated, but unfamiliar with how to communicate this illness to their daughter. Unfortunately, they were too up-front: ‘She must be told what she has.’ They were unable to understand the cognitive limitations of a 5-year-old. They were frightened of what might happen if Nerida did not follow her regimen. They pushed the same line inadvertently, or sometimes as a threat. They were constantly on tenterhooks. They expected her to take responsibility for her injections early—too early for a young child still scared of body integrity issues. Her parents took it for granted that she would get used to it. They did not understand that Nerida’s adaptation was hindered by her fears, rather than by her own relationship with the condition of diabetes or mastery of it. As Nerida developed, she kept her private world of diabetes secret. She did not join any groups that might allow her to talk about her fears or to feel normal. Only one or two friends knew, and those times when she brought it up with her parents, their anxious expressions cut off any further opening up. How could they understand diabetes, her world? They did not have diabetes. Their response was repetitive: it could have been so much worse.
Nerida’s parents could not feel her grief, because they had never dealt with their own grief. Through adolescence, she often acted out against this repressed fear of her diabetes. Her anxiety about it took over. And there were other repercussions. While in Nerida’s mind her parents never forgot about it, her sister, Shirley, was jealous of it. Anxious enquiry would follow any of Nerida’s off-days, while Shirley would roll her eyes as though Nerida was basking in the attention. Shirley often felt short-changed, because her sister’s condition meant that she had lost out on a lot, too. She loved Nerida, but hated being part of a household that was so different to that of her peers. It made it very hard for her to make friends and her parents always seemed to be fretting over Nerida and her future. She felt isolated and unimportant sometimes.
Nerida’s loss, and that of her family, is a loss across the lifespan. To summarise, loss that spans a lifetime can be thought of in two different ways: losses that are an inevitable part of living, including the dying trajectory, and those that are characterised by a cycle of chronicity, as in Nerida’s case. Loss and grief are inexorably linked, but when there is a ceaseless interplay between what was or what might have been and what is, the grieving is likely to become complicated. One consequence of this is that people like Nerida may have no recourse but to avoid their grief. This avoidance may allow them to salvage hopes for the future—a type of adaptation. It is of concern, however, that in this safety net of avoidance, the actual intensity of the emotions attached to diagnosis at any age may be missed or overlooked by family members and professional caregivers.
The provision of psychological support services in cases of irrevocable loss is particularly complicated. Individuals are likely to put their grief on hold, particularly in social settings. Recognising the process of adaptation behind an individual’s defences is a challenge. In cases where there is no doubt that there has been a psychological trauma, nurses may seek guidance and debriefing so that they can assist these individuals.
The impact of loss
When we think in terms of the whole person, with needs and reactions at the physical, psychological, social, emotional, and spiritual levels, it becomes clear that the impact of our losses can have a profound effect on a person’s life. The extent of that impact is a very individual matter. It is influenced by a large range of factors, including the nature of the loss and whether it was expected, anticipated, or sudden. Psychological factors influencing the impact of loss include personality, developmental stage in life, outlook on life, how previous losses were managed, assumptions about life that are challenged by the loss, ability to find meaning, and capacity or readiness to adapt to the change. Peoples’ experience of grief could also be influenced by their family, cultural and religious backgrounds.
Early experiences of attachment provide us with a very important blueprint, not only in terms of our fundamental response to loss but also our ability to trust other people. This trust applies to the care that others offer and to a general belief that there are many good and caring people around. According to Bowlby (1988), healthy positive attachments that can largely be taken for granted in infancy develop a secure psychological base in an individual. This secure base provides a necessary emotional harbour to enable children to develop their skills to handle the inevitable losses, frustrations, and complex human emotions inherent in daily life.
Thus, early attachment experiences generate innate assumptions about the world as it should be, both now and in the future. When those assumptions are threatened by loss events, learned coping mechanisms are activated. For those individuals lacking a secure base to cling to, the outcome can be overwhelming. It may be useful to briefly reflect on what Nerida’s experience with her family has generated in terms of her assumptions about receiving or asking for care. Given that Nerida’s parents have assigned a level of responsibility to their daughter for the management of her illness, we can generate a number of hypotheses about what Nerida has come to expect from other caregivers and from herself. She has been expected to be ‘tough’, she has adopted an exterior that camouflages her insecurities, and she does not trust that expressing her fears is reasonable (that is, she fears being judged negatively). Nerida’s story highlights the significant role of parents and professionals in helping individuals deal with their illness and the losses surrounding it. Personal experiences lead those who are ill to a framework within which they interpret their experience of loss, hopes and dreams, expectations about how the world should be, and deeply entrenched fears and attitudes about events they have learnt to dread (Bruce & Schultz 2001, 2003). These fears and discrepancies combine to produce a dynamic that can, in turn, pose a grave threat to our sense of identity, particularly when a severe loss is suffered.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
