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7589_Ch14_221-230 29/08/17 11:58 AM Page 221 14 CHAPTER Death and Dying Key Words Chapter Outline advance directive anticipatory grief bereavement Cheyne-Stokes respirations Do Not Resuscitate durable power of attorney for health care euthanasia grief hospice care living will loss maladaptive g...

7589_Ch14_221-230 29/08/17 11:58 AM Page 221 14 CHAPTER Death and Dying Key Words Chapter Outline advance directive anticipatory grief bereavement Cheyne-Stokes respirations Do Not Resuscitate durable power of attorney for health care euthanasia grief hospice care living will loss maladaptive grief mourning Patient Self-Determination Act palliative care right to die Death as a Part of Life Theories of Loss and Grief Elisabeth Kübler-Ross’s Stages Stage 1: Denial Stage 2: Anger Stage 3: Bargaining Stage 4: Depression Stage 5: Acceptance John Bowlby’s Stages of Separation Types of Losses Loss of a Spouse Loss of a Parent Loss of a Child Loss of an Unborn Child Loss of a Sibling Facing One’s Own Death Development of a Concept of Death Cultural and Religious Differences Signs of Approaching Death End-of-Life Issues Summary Critical Thinking Multiple-Choice Questions Learning Objectives A t th e e n d of th i s ch ap te r , y ou s h ou l d b e ab l e to: • • • • • • • Define key terms related to death and dying. Describe Kübler-Ross’s stages of death and dying. List different types of losses. Describe the development of a concept of death. Contrast cultural aspects of death. Name signs of approaching death. Describe ethical concerns regarding end-of-life issues. 221 7589_Ch14_221-230 29/08/17 11:58 AM Page 222 222 Journey Across the Life Span DEATH AS A PART OF LIFE The journey of life can be predictable in stages for various ages but unpredictable in overall length. Death is the inevitable fate of all living creatures. The concept of death may give meaning and purpose to life. Death and loss are very personal issues, and individual responses to it vary. Loss is an encounter that one faces during the course of his or her life. Loss challenges the person’s priorities and importance of relationships. A significant loss may influence the need for change and adaptation. Coping is a complex process that involves an individual’s selfidentity. How an individual copes depends on his or her manner of dealing with previous losses. The person’s coping mechanism will in turn affect how that individual overcomes future losses in his or her lifetime. Ideally, a loss will result in a greater appreciation of life and its fragility. Death can occur at any age. Sudden, unexpected death at any age creates unique issues in addition to those normally surrounding death. The loss of a loved one of any age is traumatic. Grief is the feeling tone or the outward expression in response to a loss. Typically, individuals experience grief in response to a death. The grief reaction to loss is a painful process. Some researchers refer to what is called anticipatory grief. Anticipatory grief is a reaction to an expected loss, such as in terminal illness. Family members become aware that their loved one is dying and they experience a sense of loss before the death occurs. Anticipatory grief may permit family members to express feelings, complete unfinished business with the dying person, and begin dealing with the inevitable loss. Grief responses may be considered adaptive or healthy in that they run over a predictable course of time and they are self-limiting and result in a healthy resolution. Maladaptive grief responses usually exhibit an exaggerated, lengthy, unpredictable course that results in unresolved conflicts. No individual should deny or ignore his or her need for emotional support during the grieving process. Professional help is available and recommended to ease the pain and suffering associated with loss. Mourning is the natural process that one goes through following a major loss. Mourning is personal and facilitates adjustment to the loss. The course of mourning may be short or long, ranging from months to years. The outcome is resumption of normal life. Individual grief varies in intensity. Some individuals experience anger, guilt, anxiety, depression, preoccupation with thoughts, and somatic complaints. Others may experience insomnia. Grief is considered a healthy, normal response of a person to a loss. A delayed, prolonged grief period beyond the usual length of time can indicate pathological reactions and require interventions. Bereavement is a state of having sustained a loss. Grief encompasses many reactions, including emotional, cognitive, and restorative responses. Emotional responses to grief include numbness, sadness, crying, loneliness, anxiety, and depression. Individuals may overeat or undereat, or become hyperactive or socially withdrawn. Many individuals experience a variety of somatic responses including dry mouth, tightness in the throat, and abdominal complaints that may lead to weakness and fatigue. The typical cognitive responses to grief and loss are usually denial, disbelief, and anger. Dreams and thoughts of the deceased are common during the grieving process. Restorative responses follow after a period of contemplation and resolution. Individuals describe having thoughts of the past, with their associated feelings of pleasure. They once again develop an interest in activities. At this stage new relationships may develop. New roles are tried and bring about new priorities and goals. THEORIES OF LOSS AND GRIEF Elisabeth Kübler-Ross’s Stages Elisabeth Kübler-Ross was the first physician to identify five distinct stages of death and dying that patients and their families go through. The patient and the family may go through the stages in any order and not necessarily at the same time. The order of these five stages of dying is based on a person’s individuality, cultural influences, and length of illness. Stage 1: Denial Denial occurs when the patient or family member believes that the doctor has made a mistake in the diagnosis and that death will not occur. Denial may occur in cases of unexpected death with the surviving family and friends left in shock and disbelief. Denial allows individuals time to deal with the full implication of the prognosis or the death. Stage 2: Anger Anger occurs when the individual internalizes the truth of the impending death. This anger may be turned inward or displaced by the person and family 7589_Ch14_221-230 29/08/17 11:58 AM Page 223 Death and Dying toward the physician, nurse, or even God. The health care worker must be able to interact in a supportive manner when anger is directed toward him or her. The family can also direct anger toward their dying loved one, blaming the dying person for leaving. Children may feel abandoned by their loss and may blame themselves for the death of a loved one. Stage 3: Bargaining When the patient or family member knows that death is inevitable, he or she may try to get more time by striking a bargain with God. Usually the bargain is for a few extra months or one more year to see a task through. Stage 4: Depression Depression is a feeling of sadness or loneliness experienced when the person knows that he or she cannot change the outcome. The person is often withdrawn and quiet. Stage 5: Acceptance Acceptance is ownership of the inevitability of death by the patient or family. Accepting individuals are able to work through unresolved feelings and problems together. All personal business is put in order. Final good-byes are said. John Bowlby’s Stages of Separation John Bowlby also studied reactions to attachment and loss. Bowlby studied the child’s reaction to separation from his or her mother, and noted similarities between this reaction and patterns of adult grief. In Bowlby’s description, the initial reaction by the child to separation is Protest. In this stage the child is upset and crying and reacting to the loss. This stage of protest can be seen in the adult’s first response to a significant loss. Bowlby described stage two as Despair. Children are quiet, sad, and subdued. They show little interest in their environment and often refuse food and lose weight. These are similar to characteristics of individuals after losing a loved one. The final stage is Detachment. During this stage the child appears disinterested in the mother when she returns. The child’s remote responses indicate his or her attempt to reorganize and resign to the loss. Bowlby developed a theory of mourning using his theory of attachment as a foundation and backdrop. In the first of his four phases of mourning, the individual passes through a numbing stage. This serves as a protective mechanism, allowing the individual time to mobilize his or her strength to deal 223 with the loss. Following this phase is a painful stage in which the individual faces the magnitude of the loss. During this stage the person feel a tremendous longing for the deceased. The third phase is one of disorganization and despair. Often individuals feel anger over their loss and search for answers to why this has happened to them. Last, persons having experienced a significant loss will need to reorganize, adapt to new roles, and revise priorities. This reorganization stage is the final stage and requires support and encouragement from friends and family. TYPES OF LOSSES Some losses are predictable and universal, whereas others are unexpected. Losses may occur at all stages of development. Many losses are classified as physical losses in that they are readily evident and visible. Death of a spouse, parent, child, or other close person represents this type of loss. Other losses are less apparent to the outside world, and they are known as symbolic losses. These losses may be the loss of work or status or change in roles such as in divorce or desertion. All losses create a grief response. Loss of a Spouse Loss of a spouse is considered a loss of great magnitude. The surviving spouse must deal with loneliness and changing roles. Studies have shown that there is great risk of death of the remaining husband or wife, especially in the first two years after the loss. Some researchers have noted a difference in the way men and women react to becoming a widow or widower. Men seem to react to the loss of their wife by feeling alone and believing they have lost a part of themselves. Women, however, react with feelings of being abandoned, deserted, and left to carry on by themselves. The age of the surviving spouse plays an important part in the way the person reacts to and deals with the loss. For men, widowhood often occurs late in life, whereas women often experience it at a much younger age. Age may influence the person’s adjustment to his or her new role. Loss of a Parent Loss of a parent at any age is difficult. For children the meaning of this loss depends on their stage of development chronologically, developmentally, and cognitively. Children should be encouraged to openly express their fears, worries, and feelings. Young children may be better able to act out their feelings during 7589_Ch14_221-230 29/08/17 11:58 AM Page 224 224 Journey Across the Life Span play sessions. They need to be reassured that they will be loved and taken care of and that they are not alone. Older children need to feel loved, supported, and accepted. Questions should be answered honestly at their level of comprehension. Loss of a parent during the adult years may be somewhat anticipated and natural but nonetheless very difficult to bear. Parents are the individual’s source of unconditional love and support. The death of a parent ends this support and brings the need for a change in roles. The adult child may now be needed to look after the surviving parent. Families should seek out support groups for added support and comfort at these difficult times. Loss of a Child Loss of a child is thought to be one of the most difficult losses to comprehend and accept. We naturally think that our children will outlive us in a long and healthy life. When a child dies either from an accident or because of an illness, parents and family members are left with insurmountable feelings of despair, disbelief, and anger. Often parents will express a need to blame someone or something when death is the result of an accident. Casting blame in a way helps the person gain some control over the senseless loss. Loss of an Unborn Child Another significant kind of loss is the death of an unborn child. Parents and their families experience significant trauma and grief following a fetal death or stillbirth. Regardless of how long the pregnancy lasted, there is an enormous sense of loss and disappointment. When the death occurs close to term, it is important for staff to allow the parents the opportunity to see and possibly hold their child. The parents first should be told what to expect in terms of the child’s appearance, color, and temperature. The baby can be wrapped in warm blankets and brought to the parents. Nursing staff should be sensitive to whether the parents would like to be alone with their baby or prefer the staff to stay with them while they say their good-byes. Parents have said that even seeing an infant’s deformity was not as bad as what they had imagined. Some parents who experienced a loss during childbirth later expressed that they believed that maybe their child had really survived. Allowing them to see and hold their baby may help them begin the grieving process. Loss of a Sibling The death of a sibling causes great pain and sorrow at any age and stage. When the death is a child, other siblings find it hard to bear and sometimes blame themselves. Surviving children have to learn to deal with their parents’ reactions and mourning as well as their own grief. Death of an adult sibling creates a void and a break in the family chain. Whether the death is a result of illness, accident, or a disaster, survivors try to make some sense of it. There is an effort to attempt to put the loss into perspective that can be understood and eventually accepted. With the loss of a loved one, there is an inevitable family reorganization and adjustment. Facing One’s Own Death Facing one’s death occurs in terminal illness. Regardless of what the person has been told, he or she is aware of impending death. Age, religion, culture, support of family and friends, and personal beliefs affect the way a person accepts death. Having family and close friends near helps decrease the loneliness that otherwise might occur. Older individuals think about the inevitability of death, and some make necessary preparations. Allowing persons to discuss their wishes for their funeral, burial, and disposition of their possessions gives control and comfort to the individuals involved. Families and friends should encourage open communication and discussion of end-of-life concerns and preferences. DEVELOPMENT OF A CONCEPT OF DEATH Children’s understanding of death is related to their age and developmental and cognitive stage. The infant has no concept of death. Gradually, young toddlers become aware of themselves as separate persons apart from their mother. Toddlers’ main concern is separation anxiety. Death to them means “less alive.” By preschool, children are concerned with getting hurt and the pain related to injuries or illness. This age group expresses fear about going to the doctor and getting shots or having pain. They frequently ask, “Is it going to hurt?” By age 5 or 6 years, children seem concerned about punishment for wrongdoings. They have seen death portrayed on television and in the movies, and some have already experienced loss in their family. They have a vivid imagination and often dream about or become frightened by what they have seen or believe to be true or possible. Schoolaged children have the capacity to understand the finality of death. They often associate death with an accident, illness, or old age. Children living in violence-prone areas may be introduced to death at an early age. With the ever-increasing number of 7589_Ch14_221-230 29/08/17 11:58 AM Page 225 Death and Dying guns, drugs, and gangs, some children see shootings, stabbings, and violence as everyday occurrences. Adolescent teens see death as final and understand rituals and customs. Death is seen as a distant possibility for adolescents because they believe they are invincible and hearty. When death happens to a friend or person of their age, the teen is shocked and angry. Death is a deterrent to achieving goals. Teens usually struggle with finding the meaning of life and their purpose in society. Adults view death according to their perspective on life. In early adulthood, individuals are determining their goals and aspirations. Their focus is placed on starting a family, raising children, and advancing their education and career. Planning for the future, although distant, begins during this stage. Concerns about their own mortality surface periodically when someone their age dies suddenly or someone becomes gravely ill. Middle-aged adults focus on physical changes and losses that they begin to experience. These losses challenge the middle-aged adult to think about his or her own mortality. The death of a parent forces the surviving child to reevaluate his or her priorities and values. Death and losses create the need for change and adaptation. The outcome may eventually be positive in that the person 225 develops a keen appreciation for and satisfaction with life. Older adults may realize that they will die in the near future and prepare by talking about death and their final wishes and by completing their life review. In doing so, individuals can move on with a sense of peace and comfort. CULTURAL AND RELIGIOUS DIFFERENCES Culture, as defined in Chapter 2, refers to all the learned patterns of behavior that are passed on through generations. Religion is a formal system of beliefs and practices. Cultural patterns or traits and religion largely direct individuals through key life events including birth, marriage, and death. These rituals help persons to know what to do at specific times and events. This guidance also helps families respond and function at the time of death and loss of a loved one. Health care professionals can better meet the needs of patients and their families by increasing their knowledge and understanding of people from different cultures. Greater knowledge will lead to an improved quality of health care. This information is summarized in Table 14.1. T A B L E 14.1 R el i g i ou s B el i ef s an d P r ac t ices R elated to Death and Dy ing Religion Beliefs and Practices Related to Death and Dying Catholicism Priest offers the anointing of the sick. Protestantism Prayer vigils by clergy or members of the congregation are kept during illness and death. Some give last rites. Jehovah’s Witnesses At death the soul is believed to die. Last rites are not given. Christian Science Visit from the Christian Science reader. No last rites are performed and autopsies are forbidden. Seventh-Day Adventist No specific practices related to death. Person treated with dignity. Eastern Orthodox Last rites are given to raise hope and courage and offer peace to the sick and dying. Hinduism Visit by priest, family cleanses body after death, and cremation is accepted. Buddhism At death the body is left undisturbed for 8 hours. The body is cleansed, then dressed in new clothing and jewelry. Cremation usually takes place within 7 days after death. Islam At death family members wash the body; the eyes are closed, and the body is wrapped in a clean white sheet. Prayer continues to the burial. Judaism Presence of rabbi desired; autopsy and cremation are forbidden. 7589_Ch14_221-230 29/08/17 11:58 AM Page 226 226 Journey Across the Life Span SIGNS OF APPROACHING DEATH No one can accurately predict the time of death. There are, however, signs that an individual is weakening and near death. Some persons begin to withdraw from what is going on around them. They turn their focus inward. There may be a decrease in senses, although hearing is said to remain until death. Some are quiet and still, whereas others are restless and agitated. Breathing patterns change. Respiratory rates may become irregular with periods of apnea, referred to as Cheyne-Stokes respirations. Vital signs change, with blood pressure dropping and pulse slowing down. Bowel and bladder control weakens. The person’s level of consciousness changes, making him or her less alert and aware. As death approaches there may be a loss of heat, producing a cool sensation to the body. Spiritual needs may take on new importance. Family and friends may be a real source of comfort to the dying person even if there is little acknowledgment of their presence. Family members need assistance and support in dealing with the approaching death of a loved one. Refer to Box 14.1 for help in communicating with family members. Individuals suffering a significant loss can be assisted by following the recommendations listed in Box 14.2. END-OF-LIFE ISSUES An advance directive is a legal document that states the person’s wishes for medical treatment B O 14.1 X H e l p i n C ommu n i c at i n g Wi t h Fami l y M em b er s Remember: Ask open-ended questions. Be nonjudgmental. Ask: What are your concerns? Determine: What is important for them at this time? Always: Ensure privacy. Attempt to: Determine level of knowledge. Support and acknowledge feelings. Don’t: Use clichés, such as “He is better off.” B O 14.2 X Way s to Surv iv e a L o ss • Accept the help of people—surround yourself with family and friends. Join support groups to share with others who have had similar losses. • Be open with feelings. Do not keep feelings and emotions bottled up. Express your feelings. • Do not neglect your health. Be aware of changes in mood and sleeping and eating patterns. • Avoid major life changes. Postpone making decisions related to moving, remarrying, or changing jobs. Attempt to adjust to loss before making major changes. • Be good to yourself. Plan pleasant activities and recognize that it is OK to feel happy. • Seek professional help if needed. in the event that he or she cannot make these decisions. Health care facilities must inform individuals of their right to have this legal protection on admission. In 1991 the federal government passed the Patient Self-Determination Act (PSDA). According to this law a patient has the right to have advance directives in place. Failure of an institution to inform a person of this right will result in withholding reimbursement of funding to the institution. A living will is a form of advance directive that states the wishes of a person regarding life-sustaining treatment in case of serious illness. This legal document is available throughout the United States. Each state may have slight differences in format or content. Some individuals decide to use a document called a durable power of attorney for health care to appoint someone to make their wishes known and carry out some decisions regarding their medical care in the event that they can no longer express themselves. On admission to a health care facility, patients are asked if they wish to sign a Do Not Resuscitate (DNR) order. This order should guide health care workers with regard to the wishes of patients should they go into cardiac or respiratory arrest. See Appendix C for a sample living will and health care proxy forms. Ethical decisions often surface and present challenges for patients and families. Frequently, surviving family members are asked to consider donating the organs of their recently deceased relative. Health care professionals must use extreme tact and care in approaching family members with such a request. The decision ultimately rests with the family and may represent the patient’s wishes, if known, or surviving family members’ beliefs. At no time should the family be pressured or judged for their decisions. 7589_Ch14_221-230 29/08/17 11:58 AM Page 227 Death and Dying Several of the following concepts are controversial and evoke many reactions because they touch on culture, religion, and ethical values. Euthanasia (or assisted suicide), known as “mercy killing” in the past, refers to the deliberate ending of one’s life and the withholding of treatment. Assisted suicide is currently legal in the states of Oregon, Washington, and Vermont but is illegal throughout the rest of the United States. This ethical issue continues to be actively debated. Right to die proponents believe that persons have the right to refuse medical treatment even though it may result in death. Health care professionals who support the right to die are not doing so to cause death but because they do not wish to prolong life in every case. Palliative care is another form of helping to relieve the suffering of the terminally ill. Although this process may shorten the individual’s life, it is said not to be the intention of this care method. Hospice care provides care for the terminally ill in the comfort of their home or in a hospice designated unit. Hospice emphasizes comfort rather than curative measures. The dying process is viewed as a natural process with the emphasis on meeting physical, psychological, spiritual, and family needs. Hospice care is provided by a number of different disciplines, including nursing, social work, physical therapy, and clergy if desired. The patient determines his or her needs in each of these areas. Following the death, hospice offers bereavement counseling for family members for 13 months. During this period, family may receive individual or group counseling at no cost. Hospice 227 care is now covered under the Affordable Care Act. Box 14.3 lists the requirements for hospice care. Each individual has the right to be fully informed of his or her condition and the benefits and risks of all of the possible treatments. Families should plan for opportunities to openly discuss a person’s concerns and wishes. Each individual and his or her family then must make the decision that best suits their needs. As heartbreaking as terminal illness is, it is awful for everyone concerned to fight over treatment options instead of offering comfort and support to each other. B O 14.3 • • • • • X R equirements fo r Ho spice Care Less than 6 months life expectancy Available primary caregiver Patient elects hospice care Physician supports hospice care Established palliative care plan H E L P F U L H I N T S Do not underestimate the importance of giving of one’s self. Remain with the dying person. Silence can be comforting when all is said and done. Your presence can say that you care. SUMMARY 1. Death is the inevitable fate of all living creatures. 8. Grief encompasses emotional, cognitive, and restorative responses. 2. Death and loss are personal issues. 9. Emotional responses to grief include numbness, sadness, crying, loneliness, anxiety, and depression. 3. Loss is an encounter that one faces during the course of one’s life. 4. Death can occur at any age. 5. Grief is the feeling tone or outward expression in response to a loss. 6. Mourning is the natural process that one goes through following a major loss. 7. Bereavement is a state of having sustained a loss. 10. Elisabeth Kübler-Ross first identified the five stages of loss and dying. 11. John Bowlby studied children and their reactions to loss and separation, and these reactions may be similar to adult grief patterns. 12. The concept of death varies with the age and stage of development. 7589_Ch14_221-230 29/08/17 11:58 AM Page 228 228 Journey Across the Life Span 13. Culture and religion serve to guide and direct individuals and families through a loss. 14. Many physical and social changes are witnessed before death. 18. A Do Not Resuscitate (DNR) order is a legal form that directs caregivers in the event of cardiac or respiratory arrest. 19. Euthanasia refers to the deliberate ending of one’s treatment or life. 15. Advance directives legally state the person’s wishes in the event that he or she cannot make health care decisions. 20. Palliative care is an approach to care that helps relieve suffering in the terminally ill. 16. A living will is a form of an advance directive that spells out the individual’s wishes for lifesustaining treatment. 21. Hospice care uses many disciplines to provide comfort and a peaceful death in the home or in a hospice unit. 17. A durable power of attorney for health care may be used to give another person the power to carry out one’s wishes in the event of illness. CRITICAL THINKING Exercise #1 Seven-year-old Timothy has just found out that his grandfather has died. His parents and immediate family are all very sad and busy making arrangements. Timothy was very close to his grandfather and spent time with him after school. Later that day his parents are uncertain if Timothy should be present at the funeral. 1. How should Timothy’s parents handle their child’s response to his grandfather’s death? 2. Should Timothy be present at the funeral? Explain your answer. Exercise #2 List five suggestions that help to bring solace and peace to family members of a dying loved one: 1. 2. 3. 4. 5. Exercise #3 An 85-year old Chinese woman has been admitted to your long-term care facility. After 3 weeks, the nurse notes that she rarely touches the food on her tray and relies on her family for food from home. She doesn’t participate or socialize with other residents despite their attempts to get to know her. The nurse also notices that she refuses to drink her bedside water. How would you interpret her behavior and what changes would you institute? 7589_Ch14_221-230 29/08/17 11:58 AM Page 229 Death and Dying 229 MULTIPLE-CHOICE QUESTIONS 1. The feeling tone or emotional reaction to a death is known as: a. Bereavement b. Grief c. Mourning d. Loss 4. Which of the following may be seen as a sign of approaching death? a. Rapid pulse b. Loss of hearing c. Irregular breathing with periods of apnea d. Anxiety 2. According to Kübler-Ross, the last stage of dying is: a. Denial b. Anger c. Bargaining d. Acceptance 5. The focus of hospice care is on: a. Curative measures b. Experimental treatment c. Drug trial and error d. Promoting comfort 3. Which of the following age groups has a concept of death’s finality? a. Toddlers b. Preschool c. Infants d. School age Visit www.DavisPlus.com for Student Resources.

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