What to learn about dying? - Chapter 17

What is death?

Death is a complex process; different systems die at different rates. Death cannot be said to have happened until there is total brain death which requires extensive testing. There is much controversy about it and the right-to-die vs. right-to-life issue.

Unlike coma patients who lack both awareness and wakefulness, people in vegetative states lack awareness but experience sleep-wake cycles, may open their eyes and sometimes move. Research showed that some people in vegetative states have more awareness than they are presumed to have.

Active euthanasia is deliberately and directly causing a person's death, while passive euthanasia is allowing a terminally ill person to die of natural causes (e.g. by taking away life-saving treatments). In between is assisted suicide, when the means to die are made available to a person who wishes to. 

The social meanings attached to death depend on historical era and culture. For instance, from the late 19th century, there is "denial of death" in Western societies, and death is taken from the home with loved ones to the hospital and funeral parlor. It is very dependent on culture how near-death people are handled, how they express grief after death, and what they think happens after death. 

Life expectancy is generally lower for males, and highest for Hispanics and lowest for African Americans (in the USA). Life expectancies vary a lot across different parts of the world.

Infants are relatively vulnerable to death, but children and adolescents have a pretty small chance of dying. Death rates climb steadily through adulthood. Leading causes of death depend on age, for instance in children it is unintentional accidents, for adolescents accidents, suicides and homicides, and for the 45-64 age group it is cancer and heart disease. 

How is death experienced?

Kübler-Ross, who sensitized our society to the emotional needs of the dying, came up with five stages of dying (and believed that similar reactions might occur in response to major loss):

1. Denial. This can get us through a crisis time, until we're ready to cope more constructively.
2. Anger. 
3. Bargaining. Thus: "Okay, I'm dying, but please..."
4. Depression. 
5. Acceptance. 

Through these stages, runs hope, in whatever sense. 

Problems with these stages are:

• Emotional responses to dying are not stagelike. Plus, not all reactions occur in all people. Shneidman proposed that dying patients experience a complex, changeable interplay of emotions, alternating between denial and acceptance and the many emotions that come with it.
• The nature and course of an illness affects reactions to dying. 
• There is much variation among individuals in their responses. Personality has influence: people cope with dying as they cope with living. 
• Dying people focus on living, not just on dying. Dying people still set goals, which center on controlling dying, valuing life in the present, and creating a living legacy. 

Responses to the death of a loved one have to do with three terms. Bereavement is a state of loss, grief is an emotional response to loss, and mourning is a culturally prescribed way of displaying reactions to death. When approaching death, there may be the experience of anticipatory grief: grieving before death occurs. 

Parkes conceptualized grieving in the context of Bowlby's attachment theory, because it also has to do with separation from a loved one. The Parkes/Bowlby attachment model of bereavement describes four predominant reactions, which overlap and thus should be viewed as phases, not stages:

• Numbness. First, the bereaved person is in disbelief and feels empty. Underneath the numbness is someone being on the verge of bursting, and occasionally difficult emotions break through. The bad news just has not fully registered yet, the person is struggling to defend against the full weight of the loss.
• Yearning. Now the bereaved person experiences more agony. It's like acute separation anxiety, and the person wishes to reunite with the lost one. The person feels panicky, extremely sad, restless and in pain, and searches for the loved one to feel reunited. Ultimately the quest for reunion, driven by separation anxiety, fails. Feelings of anger, frustration and guilt are common. 
• Disorganization and despair. Moments of intense grief and yearning still occur but now become less frequent. It's sinking in. Sometimes they feel apathetic. 
• Reorganization. Gradually, they're recovering and focus more on the living. They may revise their identities now that loved one is gone. 

Stroebe and Schut came up with the dual-process model of bereavement in which the bereaved go back and forth between coping with the emotional blow of the loss and coping with the challenges of living. Loss-oriented coping is about dealing with the emotions and getting through the loss, while restoration-oriented coping is about managing daily living, rethinking life and forming new identities or relationships. Both issues have to be confronted, but also avoided at times or we would be overwhelmed. A balance has to be found between confrontation and avoidance of coping challenges of both categories. This model has recently been extended to also take family dynamics into account, since that influences the individual coping (and individual coping influences family coping dynamics too). 

What does death mean to the infant?

In infancy, an understanding of concepts that pave the way for understanding death is gained. For instance, understanding "being and nonbeing" and "here and gone". They can not understand death as a permanent separation and loss yet, and though they may notice changes in the emotional climate in their home after someone died, they can not interpret it yet. Bowlby said that infants separated from their attachment figures engage in protest, and when they can not find their loved one again, despair begins. Hope is lost and the infant becomes apathetic, sad, may have poor appetite and different sleep patterns, clinginess and may regress to less mature behavior. Eventually the bereaved infant enters a detachment phase, and renewed interest emerges for toys and companions. Infants recover best if they can rely on an existing attachment figure or attach to someone new and good. 

What does death mean to the child?

Youngsters are very curious about death, but they do not fully understand it yet. A mature understanding of death has several components:

• Finality. 
• Irreversibility.
• Universality.
• Biological causality: it's the result of natural processes in the organism, even if caused by external things. This one is hardest to master.

Very young children grasp some aspects of death, but major breakthroughs in understanding occur in the 5-7 age range, as cognitive development gets better. Their beliefs are shaped by the cultural/religious context and their unique life experiences. Sometimes adults just make death scarier and more confusing to children, and it's best to handle it simply, but honestly and use events like the death of a pet to teach children. 

Dying children are surprisingly well aware that they're dying and that it's irreversible. They then experience many of the emotions that dying adults experience. They want to keep a sense of control. Parents can best follow their child's lead in how to talk about upcoming death.

Four major messages have emerged from studying bereaved children that experienced a loss: children grieve, they express their grief differently than adults, they lack some of the coping resources that adults command, and some are vulnerable to long-term damage of bereavement. Youngsters have mainly access to behavioral/action coping strategies. It's important to recognize a child's grief and to include them in the family's mourning rituals. Preschooler's grief is expressed in problems with daily routines like sleeping and eating, and possibly temper tantrums and dependency. Older children express their grief more directly, but also struggle with somatic symptoms like headaches. Some bereaved children continue to display problems after a while and a minority develops problems that carry into adulthood, but most adapt well and show resilience. This goes best when the caregiver maintains their own mental health, provides good parenting, and a secure attachment is at work. Supportive friends can help too, but this is challenging since the child is struggling and peers are sometimes insensitive. 

What does death mean to the adolescent?

Adolescents can usually think more abstractly about death, and are thinking about afterlife. A biological concept of death and a spiritual/supernatural one can exist side by side. 

Adolescents' reactions to becoming ill reflect the themes of this stage. For instance they get self-conscious about hair loss. They long to be like and be accepted by their peers. And their long for autonomy interferes with the dependence on parents/medics. 

When losing their parents, adolescents' sometimes do not express their grief, as they're scared of how it will affect other's opinions of them. The grief then comes out another way, like in delinquency or somatic problems. As they form identities, the death of their parent will become part of it. Some still experience problems a while after the loss. Losing a friend can also lead to psychological problems as peers are very important. 

What does death mean to the adult?

To really see the effects of a death, the sociocultural context, developmental perspective, and family systems perspective have to be taken into account. There's no standard reaction to bereavement, everyone follows a different grief path. Complicated grief/prolonged grief disorder is unusually long or intense grief that impairs functioning. Disenfranchised grief is grief that is not fully recognized or appreciated by other people, and thus comes with little sympathy and support: this happens sometimes for gay couples, or when people lose their ex-spouse or extramarital lover. A child's death can be devastating for a family, and how siblings adjust depends a lot on how their parents are doing. 

The view that has guided much bereavement research is called the grief work perspective: the view that to cope well with deat, bereaved people must confront their loss, experience painful emotions and work through them, and detach psychologically from the dead person. From this perspective, complicated grief as described before is abnormal, but so is lack of "normal" grief. But is there a "right way to grieve"? It varies greatly among persons, and this perspective is also culturally biased. This perspective does not really seem to work, and it also seems too much "grief work", like ruminative coping, can backfire. And truly detaching from the deceased is not always necessary or helpful, continuing bonds may exist, especially in some cultures. Internal approaches to continue the bond (like feeling they watch over you) can help adjustment, but external approaches (like seeking comfort from their possessions) may reflect continued efforts to reunite and difficulty with coping. And again culture and norms are at work. 

Coping with bereavement is influenced by personal resources (like personality and coping style), the nature of the loss (both closeness to the person and cause of death), and the surrounding context (with support and stressors). Also, attachment styles are related to responses to death:

• A secure attachment style is associated with relatively good coping with death.
• A resistant/preoccupied style, which involves being very anxious about abandonment, is linked to being overly dependent and experiencing extreme, prolonged grief after a loss. 
• An avoidant/dismissing style, associated with difficulty expressing emotions or finding comfort, relates to little visible grieving and disengagement, even from the deceased person. 
• A disorganized/fearful style, rooted in unpredictable and anxiety-arousing parenting, links to being especially unable to cope with loss, resulting in alcohol abuse for instance. 

In the dual-process model of bereavement, this means resistant individuals focus on the loss whereas avoidant individuals focus on restoration. Secure attached individuals can balance the two. 

Posttraumatic growth is the positive psychological change resulting from a heavy experience like a loss or illness (e.g. more life appreciation, more independency). Posttraumatic stress and growth can go hand in hand, and growth is most likely when distress is significant but not crushing.

How to take the sting out of death?

A hospice is a program that supports dying people and their families through a philosophy of caring over curing. It can be an opportunity to die with dignity, free of pain and surrounded by loved ones. It can be an institution or people can be visited at home by hospice workers. Hospice care is part of a larger movement to provide palliative care, that's aimed at bringing comfort to and meeting the (psychological) needs of people with serious illnesses. Hospice care has those key features:

• The dying person and their family decide what support they need and want.
• Attempts to cure the patient or prolong life are not emphasized, but death is not hastened either.
• Pain control is emphasized.
• The setting for care is as normal as possible. 
• Bereavement counseling is provided to the family before and after death.

In some cultures, death is a taboo and therefore hospice/palliative care is harder to get off the ground.

Bereaved individuals at risk for complicated grief can benefit from psychotherapy, and family therapy can work well, because death influences family systems. And support groups or self-help courses can work. 

Concluding notes

1. Nature and nurture truly interact in development.
2. We are whole people throughout the life span (advances/deficits in one area have implications for other areas of development). 
3. Development proceeds in multiple directions (gains, losses and changes happen at every age).
4. There is both continuity and discontinuity in development.
5. There is much plasticity in development. 
6. We are individuals, becoming even more diverse with age.
7. We develop in a cultural and historical context.
8. We are active in our own development. 
9. Development is a lifelong process. 
10. Development is best viewed from multiple perspectives.