Motivation and emotion/Book/2014/Death and emotion

Overview
From the first moment as a child when we looked up at the sky and realised our time on earth was finite to the last moment of our lives, death is something that we have to deal with. Our understanding grows from a first, panicky inkling of what the future might ultimately hold for us to a tangible realisation upon the loss of a pet or grandparent that what death means is, regardless of religious belief or personal creed, having to live without the being you lost.

Death means different things to different people at different stages of life. Death is something very different for a nurse working with geriatric patients than it is for a young person from an insular family unit. This book chapter is designed to hopefully, guide you, the reader, through some of the emotional feelings behind death and hopefully will help you understand what you meant as a little child when you realised that you didn’t want to die, and even perhaps understand what it means for an ailing person on the cusp of the end of their lives what they mean by “I want to die”.

This chapter addresses a very uncomfortable subject, and may cause distress in some readers. If at any point you feel you need help, please don’t hesitate to contact someone, or call Lifeline (13 11 14)

Death as a child
There is a quote from Edna St Vincent Millay’s 1943 poem that says “Childhood is the Kingdom where nobody dies” and this is a fair point. Western parents would like their children to remember childhood as a rose-coloured world where death is something that happens to ‘other people’. It is important for children’s emotional health to explore death and its concepts. Confusion about death has been linked to feelings of depression in children who have experienced the death of someone close (Nguyen & Scott, 2013) (Renard, Engarhos, Schleifer, & Talwar, 2013). It is common in western society for parents to try to shield their children from death out of a desire to protect them (Miller & Rosengren, 2014). Some parents have expressed a fear of their own difficult emotions surrounding the death of a loved one affecting their children in an adverse way (Miller & Rosengren, 2014). Others have expressed that they feel it would be difficult to deal with their own emotional distress whilst attending to the emotional distress of their children, as for a parent the needs of the child often come before the needs of the self (Miller & Rosengren, 2014).

Death anxiety
The understanding of death often appears first as an existential realisation that life is finite. A quote from Langs (2004) states that ‘Fear of Death is Humankind’s basic Dread’, and goes on to explain that from the psychodynamic perspective, fear of death is always unconsciously present. Anxieties about death can be separated into several different categories; existential death (I’m going to die someday), Predator death (This is going to kill me) and predatory death (I’m going to die because I did this) (Langs, 2004).

Almost all of us will have a childhood memory of feeling anxious about the future, and what death could hold. This kind of death anxiety is called existential death anxiety, and it is explained as the overwhelming realization of human mortality (Langs, 2004).This common anxiety is often suppressed by using denial as a defense mechanism (Langs, 2004).

Predatory death anxiety is the fear of death that expresses itself when physical and psychological threats to life are experienced (Langs, 2004). This is the kind of death anxiety felt when you narrowly avoid having a car accident, are having a serious argument with someone physically threatening, or are about to get the results back from a cancer biopsy. The third kind of death anxiety is predatory death anxiety. This kind of death anxiety is the hardest to understand as it is the fear of life being exterminated due to acts of physical or psychological harm (Langs, 2004). This kind of death anxiety can be best understood as the fear of revenge, or the guilt felt when death is caused by the self (For example, this difficult form of death anxiety can be experienced with abortion).

Understanding Death
Children come to understand death through social contexts and cues provided by others (Miller & Rosengren, 2014), as it is common in Westernised society for children to have no firsthand experience of death (Miller & Rosengren, 2014). There is a common school of thought based on Piaget’s stages of cognitive development that states that children are not able to fully understand death due to a lack of cognitive maturity (Bonoti, Leondari, & Mastora, 2013). Another theory suggests that parents shield their children from death to avoid having to deal with challenging emotions that are evoked by death (Miller & Rosengren, 2014). However, even very young children have expressed a fundamental knowledge that death causes sadness, and that there is a spiritual belief that after death the spirit continues on (Miller & Rosengren, 2014).

The practice of adult evasion on the topic of death itself can carry the idea that the topic of death is taboo, and observant children can extract ideas about death from evasion and euphemism as well as candid talk (Miller & Rosengren, 2014).



Explaining death
The notion that death is a topic that young children find challenging to comprehend is not unfounded. Death is a concept that is abstract, having both spiritual and biological meanings that children relate to in different stages of development (Bonoti et.al. 2013). In order for children to understand death it is needed for the child to differentiate between animate and inanimate, between self and non-self, and have a concept of the future (Bonoti et.al. 2013).

Research has suggested that understanding death requires the understanding of four different concepts, irreversibility, finality, inevitability/universality and causality (Bonoti et.al. 2013; Miller & Rosengren, 2014). Irreversibility is the concept that death is not able to be reversed; the idea that once a person is dead they will not come back to life. Finality is the understanding that death is the end of something. Inevitability/universality is the understanding that death will eventually come to all living things, and that everyone will experience it at some point, and causality is the understanding of what causes death (e.g., the shutting down of organs, old age, accidents etc.) Irreversibility, finality and inevitability are understood between the ages of 5 and 7, whereas causality is understood later around the age of 10 as knowledge of biological functions of the body are understood(Renard et.al. 2013).

Biological explanations about death often resound better with younger children, with spiritual or religious explanations working better for children around the age of 10 (Renard et.al. 2013). However both biological and spiritual explanations of death are not mutually exclusive. (Renard et.al. 2013)

Death as an adult
By the time we reach adulthood there is a distinct hope that there will be some understanding about death and the emotions experienced. Within Western society death is more invisible, occurring within hospitals and nursing homes out of sight and out of mind. Some children experience death through pets and grandparents, but yet more still grow up with no firsthand knowledge of death and the emotions that it engenders in others.

Nurses and death
Of all the professions that have connections to death, nursing is perhaps one of the ones that are most physically and emotionally involved with death and the dying process. Nursing provides the brunt of face-to-face patient care (Anderson & Gaulger, 2006), with nurses assisting those in the end stages of their lives with not just medical care, but help with physical tasks such as toileting, feeding and showering. Nurses have the highest level of physical contact with patients (Anderson & Gaulger, 2006), so it comes as no surprise that those in the nursing profession sometimes form deep attachments to their patients (Anderson & Gaulger, 2006).

Nurses who work in nursing homes with the elderly particularly find themselves growing attached to the residents they care for, as they care for the same people day in and day out for sometimes months, even years (Anderson & Gaulger, 2006). Nurses in these settings often find they walk a fine line between caring and ambivalence (Anderson & Gaulger, 2006), as there is an attitude of ‘carrying on’ with nursing duties despite personal feelings of grief or other painful emotions (Anderson & Gaulger, 2006). This attitude can provoke disenfranchised grief, where the feelings of pain and sorrow are overlooked and treated as unacceptable.



Nurses working in high mortality settings such as nursing sometimes experience overwhelming sadness and guilt (Anderson & Gaulger, 2006), however the relationships that nurses gain with the residents or patients can be a primary reason why nurses stay in their jobs, despite the challenges (Anderson & Gaulger, 2006). Nurses also sometimes find that working with dying people can be rewarding, and that working with death can result in personal and professional growth (Anderson & Gaulger, 2006). By making a difference in their patient’s lives, nurses are also able to help families through the grieving process and gain new techniques for dealing with complex emotions within themselves or others (Anderson & Gaulger, 2006).

Experiencing the death of a child
One of the hardest things to bear as a parent is to deal with the loss of a child. The experience of neonatal death is particularly hard, and can be almost incomprehensible to parents (Lundqvist & Nilstun, 1998). It has been found that the unexpected death of a child can unravel self-concept, and remove psychological defences for death and death anxiety (Barr & Cacciatore, 2008).

People build defenses for fear of death and death anxiety, and these usually consist of some form of denial (Barr & Cacciatore, 2008). If these defenses are maladaptive, they can result in some form of psychological illness (Barr & Cacciatore, 2008). When experiencing the death of a neonatal child, often times these defences are stripped away, leaving the parents vulnerable to fears of death and dying that would otherwise be suppressed by psychological defense mechanisms. In fact, it has been found that the fear of death may have a significant correlation with maternal grief following the death of a baby (Barr & Cacciatore, 2008).

In the olden days, it was believed that the less the mother had to remember the deceased baby by the better; she could forget that she had given birth to a baby that died (Lundqvist & Nilstun, 1998). Stillborn babies were taken away from the mothers before they could have a chance to see or hold the baby, the family was encouraged to remove all reminders of the deceased child, and the parents were encouraged to forget that the baby ever existed. This resulted in almost 1/3 of women who had experienced neonatal death suffering from distress, apathy, insomnia and a feeling of emptiness one to two years after the delivery (Lundqvist & Nilstun, 1998).

The mothers sometimes wondered if the baby was still alive; that perhaps the baby had been given to someone else. The experience became unreal to them, and they were left with a hole that couldn’t be filled (Lundqvist & Nilstun, 1998).

In current nursing practices nurses encourage parents to see, touch, hold and dress their deceased child and take photographs (Lundqvist & Nilstun, 1998). It is essential that the baby becomes real to the parents in order to enable the parents to grieve (Lundqvist & Nilstun, 1998). The relationship with the nurse is helpful with these parents, and helps overcome the feelings of fear ‘The parents...will remember the scent of a baby and the quietness of death’(Lundqvist & Nilstun, 1998).

Wish to hasten death
There is a special relationship between death and those reaching the end of their lives. It is often a difficult thing to see, let alone experience. The elderly and people facing the end of their lives often experience debilitating things both physically and mentally as they lose control of physical functions like bowel movements, bladder control and even breathing (Monforte-Royo, Villavicencio-Chávez, Tomás-Sábado & Balaguer, 2012). There is a profound loss of dignity associated with the end of life, and a sense of fear surrounding death that isn’t always related to the experience of death itself, but the journey that they will have to go through to get there (Monforte-Royo, 2012). There is an attitude at this stage of life that the physical deterioration that is expected to be experience is worse than death itself (Monforte-Royo, 2012).

When faced with the debilitation that accompanies the failing body the hardest thing to experience is the knowledge that they were not like this before, and the fact that they don’t want to be remembered as someone who was as helpless as they feel in that present moment (Monforte-Royo, 2012).

The wish to hasten death is something that is common in those facing the end of their lives. It is often expressed simply, using language such as “I want to die”. It is a wish that is hard to understand, as it is not merely a wish for existence to end, but a wish to live, but not in the way they are at that present time (Monforte-Royo, 2012). Medical advances that increase life expectancy or social problems such as family breakdown can contribute to a wish to hasten death.

Causes:
 * Pain
 * Depression
 * Hopelessness
 * Feeling of being a burden
 * Loss of autonomy
 * Lack of social support

The wish to hasten death isn’t merely a vocal expression of mental and physical distress; it is also a means of control and a belief for the future – a means of limiting disintegration and loss of self. The wish to hasten death is also a way out of the present situation, a hope for something better (Monforte-Royo, 2012). Those facing the end of their lives often like to take solace in spiritual beliefs, such as the belief in an afterlife to curb the emotional distress felt at the presentation of the great unknown.

Death row inmates
Some circumstances surrounding fatality can create more pain than others. In countries such as the United States of America, the death penalty is seen as a suitable form of punishment for certain capital crimes. However, in order for the death of the individual to be supported they must be seen as monstrous and subhuman; so much so that it becomes hard for the general public to see that they had families and loved ones like any other human (Jones & Beck, 2006).

For the loved ones of those on death row, every appeal, sentencing and arrest feels like another death (Jones & Beck, 2006). Capital punishment often creates disenfranchised grief in the families and loved ones that support them. Death by execution is a loss that carries a social stigma (Jones & Beck, 2006), and the families of incriminated individuals are often denied the right to grieve (Jones & Beck, 2006). Their loss cannot be publicly mourned or acknowledged (Jones & Beck, 2006). This type of grief is often accompanied by high levels of distress, discomfort and prolonged grieving (Jones & Beck, 2006).

The primary caregivers of the accused often experience social isolation. Children of those on death row have been asked to leave school, to assure their safety (Jones & Beck, 2006), family members have been subjected to harassment at school, church, work and other settings (Jones & Beck, 2006), and through all this, the family are experiencing the phenomenon of non-finite loss.

Non-finite loss is experienced in situations where losses are slowly manifested over a period of time (Jones & Beck, 2006). This kind of loss can be experienced in such experiences as children being born with a life shortening syndrome, the diagnosis of a terminal illness, or the sentencing of a loved one to death (Jones & Beck, 2006). Non-finite loss can be exacerbated by milestones that the affected individual cannot meet, such as Christmases, marriages and births. Non-finite loss is a kind of limbo, where the family is caught between two worlds (Jones & Beck, 2006) with the knowledge that whilst their loved one is not dead, they will be shortly.

Conclusion
The death of a loved one is a highly uncomfortable subject, one that is surrounded by many painful emotions that are hard to deal with. From children to the very elderly, each stage of life has a different perspective on death and the issues surrounding it. For children, the main issue surrounding death is how to understand it from the social and contextual cues given from adults, peers and the media as well as the firsthand experience of the death of a pet or grandparent, which are often the first losses a child will experience.

The issues surrounding death can cause anxiety, from the tangible fear of bodily or mental harm to the existential realization that life is finite. Different coping mechanisms are used for each type of anxiety, but these defenses can be eroded by events such as neonatal death.

For those experiencing the end of their lives and those working with them, death is a very different thing. Nursing is one of the few professions that work closely with death and grief, often experiencing a form of it themselves whilst helping families, patients or residents with their own grief surrounding the end of life stage.

It is not uncommon for those facing the end of their lives to experience a wish to die. Whilst incomprehensible to some, this wish is not merely a wish to end their existence, but a cry for help that expresses the fear, pain and loss of dignity that accompanies a failing body as they face the end of their lives. The expression of a wish to die in the terminally ill is a way of controlling their future, and halting the erosion of the self as they are more and more dependent on others.

In this chapter we looked at some of the different facets of death, and what death means emotionally at different stages of life and to different people. If you wish to explore further, please see the ‘see also’ section which has links to different pages about grief and grieving experiences at different stages of life.