Chapter 19 Death, Dying, and Bereavement Today, most people in industrialized nations die in hospitals. For 20% of people, death is a gentle and relatively painless process. For the rest, it is not. An adult brain starved of oxygen for 2 to 4 minutes or more is irreversibly damaged. More people have long and drawn out deaths today than in the past because of medicaion and medical technology.

Phases of Dying Agonal phase Clinical death Mortality Gasps and muscle spasms during first moments in which regular heartbeat disintegrates Clinical death Interval in which heartbeat, circulation, breathing, brain functioning stop, but resuscitation still possible Mortality Permanent death

Persistent vegetative state Defining Death Brain death irreversible cessation of all activity in brain and brain stem standard for death in most industrialized nations Persistent vegetative state cerebral cortex no longer registers electrical activity brain stem remains active The use of brain death as the definition of death may not be sufficient. For example, it does not tell us what to do in the case of a persistent vegetative state. Approximately 10,000 Americans are in a persistent vegetative state.

Death with Dignity Integrity of person’s life is fostered by the quality of communication with and care for dying person: assurance of support compassionate care esteem and respect candidness about death’s certainty information to make reasoned end-of-life choices A century ago, most deaths occurred at home and people of all ages shared in the care of the dying. Also, because childhood and infant mortality rates were high, most people knew someone younger than themselves who had died. Today, most people (with the exception of those living in particularly violent neighborhoods) are insulated from the process of death. This makes people feel more distant from death and more likely to deny it. Young children may believe that certain people (those like them or close to them) do not die. They also tend to think that dead things still have some capabilities of living things, such as thinking, feeling, and dreaming. An understanding of death can help children accept it – and adults should not use cliches or misleading statements to help children understand.

Death Anxiety Cultural variations influenced by religious teachings for Westerners, spirituality, meaning of life more important than religious commitment Individual variations women more anxious than men low among adults with deep faith in higher being reduced by sense of symbolic immortality Women have more death anxiety. Death anxiety can be reduced by: Spirituality (a sense of life’s meaning; rather than religious commitment per se) A well-developed personal philosophy of death Faith in some form of higher force or being Growing older (death anxiety declines with age) Ego integrity Symbolic immortality: sense that a person will continue to live on through her children, work, or personal influence

Age, Gender, and Death Anxiety Figure 19.1 Relationship of age and gender to death anxiety Figure 19.1 (Adapted from Tomer, Eliason, & Smith, 2000.)

Kübler-Ross’s Theory Denial Anger Bargaining Depression Acceptance Denial – denying the prospect of death Anger – at having to die; may be directed at others Bargaining – for extra time Depression – about the loss of your own life Acceptance – state of peace and quiet about upcoming death; detachment from all but the closest friends or relatives; may have a “flicker” of hope © Lesley Rigg/Shutterstock 7

Evaluating Kübler-Ross Stages are not a fixed sequence, not universal Does not allow for context May lead to caregiver insensitivity Best seen as coping strategies 1969 A person may not pass through all of these stages and may not pass through them in this order. Kubler-Ross suggests accepting the dying person’s denial Although Ross suggests depression is a necessary step on the way to acceptance, person’s caring for the dying person should be careful to respond to the person’s wishes in order to decrease hopelessness and despair. Although Kubler-Ross suggested her theory be interpreted flexibly, calling it a “stage” theory lead to a more strict interpretation. Some health care workers have tried to “force” people through the stages of the theory. © Monkey Business Images/Shutterstock 8

Appropriate Death Makes sense in terms of person’s pattern of living, values Preserves or restores significant relationships As free of suffering as possible Also includes achieving a sense of control confronting and preparing for death Appropriate death: one that makes sense in terms of the individual’s pattern of living and values, restores significant relationships, and is as free of suffering as possible.

Factors That Influence Thoughts About Dying Nature and course of illness Personality and coping style Behavior of family members and health professionals Spirituality, religion, culture © Alexander Raths/Shutterstock Factors that affect the way people cope with their own death: Nature of the disease: course of the illness and its symptoms Personality and coping style: poorly adjusted people are usually more distressed Family members’ and health professionals behavior: Persons caring for the dying should be honest, have social support, low in death anxiety Spirituality, religion, and culture: a strong sense of spirituality and/or faith reduces fear of death; cultural attitudes toward death may affect a person’s coping

Traditional Places of Death Home: most preferred option: intimacy, loving care only about 25% die at home need for adequate caregiver support Hospital: intensive care unit can be depersonalizing comprehensive treatment programs optimal Nursing home: focus usually not on terminal care improves greatly when combined with hospice care Home: May be difficult because medical improvements allow older and sicker people to die at home. ½ of all AIDS patients die at home. Support for the caregiver is essential. Relationships may be conflict ridden and most homes lack adequate equipment to care for a dying person. Hospital: 80% of deaths take place in the hospital. May depersonalize the death experience the patient and family.

Hospice Approach Comprehensive program of support for dying and their families: patient and family as unit of care interdisciplinary team palliative (comfort) care home or homelike setting bereavement services Hospice is a philosophy, not a medical facility, so it can be applied in diverse ways and settings. About ½ of all people dying of cancer and over 30% dying of AIDS choose hospice. Medicare and Medicaid benefits are available for hospice, and hospices also serve dying children and their families. © James Steidl/Shutterstock 12

Forms of Euthanasia Passive withdrawal of treatment advance medical directive: living will, durable power of attorney Voluntary active medical staff or others act to end life at patient’s request Assisted suicide medical staff provide means for patient to end own life remains controversial Involuntary active medical staff end life without patient’s consent

International Public Opinion on Voluntary Active Euthanasia Figure 19.2 Public opinion favoring voluntary active euthanasia in five nations Figure 19.2 (From Harris Interactive, 2011; Pew Research Center, 2006.)

Advance Medical Directives Written statement of desired medical treatment in case of incurable illness Living will: specifies desired treatments Durable power of attorney: authorizes another person to make health-care decisions on one’s behalf more flexible than living will can ensure partner’s role in decision making even in relationships not sanctioned by law

Assisted Suicide Doctor provides drugs for patient to use Legal in few nations, tacitly accepted in many Legal in only four U.S. states Few choose this option Highly controversial: opposed by many, including AMA some find option comforting

Grief Process Avoidance Confrontation Restoration “emotional anesthesia” Confrontation most intense grief Restoration dual-process model of coping with loss alternate between dealing with emotions and with life changes Avoidance: shock followed by disbelief: may last hours to weeks. Includes feeling “numb.” Confrontation: confronting the reality of the loss. Most intense experience of grief. May include a range of emotional response as well as absent-mindedness and depression. Accommodation: the person starts to adapt to the loss and adjust to the world without the person. Forms an inner representation of the person rather than relying on physical presence. © Cris Kelly/Shutterstock 17

Grieving Sudden or Prolonged Deaths Sudden, unanticipated Avoidance from shock and disbelief Survivor may not understand reasons Suicide especially hard to bear Prolonged, expected Anticipatory grieving: allows emotional preparation Reasons for death usually known

Difficult Grief Situations Parents losing a child Children or adolescents losing a parent or sibling Adults losing an intimate partner Bereavement overload © Giideon/Shutterstock 19

Bereavement Interventions General support sympathy, understanding patient listening, “being there” Interventions support groups help with reorganizing daily life Children and adolescents after violent death, prevent unnecessary reexposure Difficult situations sudden, violent, unexplainable, or ambiguous deaths grief therapy, individual counseling

Resolving Grief Give yourself permission to feel loss. Accept social support. Be realistic about course of grieving. Remember the deceased. When ready, invest in new activities and relationships. Master new tasks of daily living.

Death Education Courses in death and dying offered at many educational levels Lecture format: imparts knowledge but may increase discomfort Experiential format: role playing, discussions, guests, field trips may reduce death anxiety

Goals of Death Education Increase understanding of physical, psychological changes in dying Help students learn to cope with death of loved ones Prepare informed consumers of medical, funeral services Promote understanding of social, ethical issues

Readers may view, browse, and/or download material for temporary copying purposes only, provided these uses are for noncommercial personal purposes. Except as provided by law, this material may not be further reproduced, distributed, transmitted, modified, adapted, performed, displayed, published, or sold in whole or in part, without prior written permission from the publisher. 24