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13 HUS 133 Dying and Bereavement

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  • Figure 13.1 Number of Oregon Death with Dignity Act (DWDA) prescription recipients and deaths 1998-2007
  • Figure 13.7 The dual process model of coping with bereavement . . .

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  • 1. CHAPTER THIRTEENDying and Bereavement 1 of 36
  • 2. Definitions and Ethical IssuesLearning Objectives• How is death defined?• What legal and medical criteria are used to determine when death occurs?• What are the ethical dilemmas surrounding euthanasia?• What issues surround the costs of life-sustaining interventions? 2 of 36
  • 3. Definitions and Ethical IssuesSociocultural Definitions of Death• All cultures have their own views. – Melanesians – Other South Pacific cultures – Ghana• Mourning rituals and states of bereavement – Orthodox Jews – Muscogee Creek Indians – Japanese culture and Buddhism in Japan – Toraja of Indonesia 3 of 36
  • 4. Definitions and Ethical IssuesDefinitions of DeathIn Western culture, death has several meanings: An image or object Death as a mystery tombstone What is it like to die? Death as a statistic Death as a boundary mortality rates You can’t come back. Death as an event Death as a thief of meaning funeral I feel so cheated. Death as a state of being Death as fear and anxiety nothingness I’m afraid to die. Will it hurt? Death as an analogy Death as a reward or punishment dead-end street Heaven awaits the just 4 of 36
  • 5. Definitions and Ethical IssuesLegal and Medical Definitions• Clinical death accepted for hundreds of years – Lack of heart beat and respiration• Whole-Brain Death-most widely accepted today – Includes eight specific criteria, all of which must be met • No spontaneous responses to any stimuli • No spontaneous respiration for at least 1 hour • Total lack of responsiveness to even the most painful stimuli • No eye movements, blinking, or pupil responsiveness • No postural activity, swallowing, yawning, or vocalizing • No motor reflexes • A flat EEG for at least 10 minutes • No change in any of these when tested again 24 hours later• Persistent Vegetative State (PVS) from which a person does not recover following: – Disruption of the blood flow to the brain – Severe head injury – Drug overdose 5 of 36
  • 6. Persistent Vegetative StateHas severe brain damage and coma, but also show signs of “sleep-wakefulness” cycle without anydetectable evidence of awareness.•Look normal; eyes open and move about; spontaneous movement of limbs;•Appear to smile, grimace, laugh, moan, and groan;•No visual tracking; no visual fixation•Absence of any expression of self-awareness, specific recognition of external stimuli•No consistent evidence of attention, intention, or learned response 6 of 36
  • 7. Definitions and Ethical IssuesDecisions regarding healthcare: advance directives – Living Will tells how, when, and under what circumstances life-sustaining treatments are provided or withheld – Advanced Directives same as Living Will – Durable Power of Attorney (DPOA) allows a surrogate to make decisions for the patient – Health Care Proxy person given the legal right to make health care decisions 7 of 36
  • 8. Definitions and Ethical IssuesDNR Orders –When patients are transferred from one facility to another, orders may be lost –Without orders, physicians may try to resuscitate patient before learning of DNR – Most want compassionate care that is pain-free and emotionally supportive end of life (EOL) treatment – Found mainly in 75+ years nursing home residentsOrgan Donation – Nearly 95,000 Americans wait for transplants – Kidney is most common organ for transplant – Donor card, family discussions on religion, philosophy, etc. 8 of 36
  • 9. Definitions and Ethical IssuesEthical IssuesBioethics – Examines the interaction between human values and technological advances – The most important bioethical issue is euthanasia.Euthanasia – The practice of ending life for reasons of mercy Active euthanasia • Deliberately ending someone’s life through some sort of intervention or action Passive euthanasia • Ending someone’s life by withholding treatment or food • Controversial depending on the reasons and motives 9 of 36
  • 10. Definitions and Ethical IssuesEthical Issues• Oregon Death with Dignity Law – 1994 – Provides for people to obtain prescriptions for self- administered lethal doses of medication (Fig. 13.1)• Reasons patients choose assisted suicide – Loss of autonomy (96%) – Decreasing ability to enjoy life activities (96%) – Loss of dignity (76%) 10 of 36
  • 11. Ethical Issues – Case Study• Case Studies Nancy Cruzan (July 20, 1957–December 26, 1990) After an automobile accident left her in a persistent vegetative state, her family petitioned in courts for three years, as far as the U.S. Supreme Court, to have her feeding tube removed. The Court initially denied the familys request, citing lack of evidence of Cruzans wishes. The familys request was ultimately granted by providing additional evidence. On December 15, 1990, the tube was removed and she died 12 days later. 11 of 36
  • 12. Ethical Issues – Case StudyTerri Shiavo• The Schiavo case was a legal battle between the husband and the parents of Terri Schiavo that lasted from 1998 to 2005. At issue was whether the equipment that had been used to sustain her life since 1990 – specifically a feeding tube – should have been disconnected, thereby allowing her to die.• Terri Schiavo collapsed in her St. Petersburg, Florida home in full cardiac arrest on February 25, 1990. She suffered massive brain damage due to lack of oxygen and, after two and a half months in a coma, her diagnosis was elevated to vegetative state. For the next few years doctors attempted physical therapy and other experimental therapy, hoping to return Terri to a state of awareness.• In 1998 Terris husband, Michael, petitioned the court to remove her feeding tube. He was opposed by Terris parents, who argued that Terri was conscious. The court determined that Terri would not wish to continue life-prolonging measures, and on April 24, 2001 Terris feeding tube was removed for the first time, only to be reinserted several days later.• On February 25, 2005, a Pinellas County judge ordered the removal of Terris feeding tube. Several appeals and federal government intervention followed, which included U.S. President George W. Bush returning to Washington D.C. from a vacation to sign legislation designed to keep Terri alive. After all attempts at appeals through the federal court system were unsuccessful, Terris feeding tube was disconnected on March 18, 2005. Terri died at a Pinellas Park hospice on March 31.• In all, the Schiavo case involved 14 appeals and numerous motions, petitions, and hearings in the Florida courts; five suits in federal district court 12 of 36
  • 13. 13 of 36
  • 14. Definitions and Ethical IssuesThe Price of Life-Sustaining Care• A growing debate concerns the costs for keeping someone alive through technology and includes financial, personal, and moral costs.• The most obvious are financial costs which are usually staggering. – Personal emotional costs are often underestimated, but can be devastating and long-lasting. 14 of 36
  • 15. Thinking About Death: Personal AspectsLearning Objectives• How do feelings about death change over adulthood?• How do people deal with their own death?• What is death anxiety, and how do people show and cope with it? 15 of 36
  • 16. Thinking About Death: Personal Aspects A Developmental View of Death• Young children, 2-3 years, view death as a permanent sleep and may blame themselves for causing it• Children before 7-8 years do not appreciate the universality, inevitability, and irrevocability of death• Children age 9-10 years, recognize that they and all living things will die 16 of 36
  • 17. Thinking About Death: Personal Aspects A Developmental View of Death• Adolescents and young adults most fearful of death; they want to achieve so many things in their lives• Older adults show more acceptance and less fear of death but focus on the process of dying rather than death itself• Many elderly face a “bereavement overload” from losing so many friends 17 of 36
  • 18. Thinking About Death: Personal AspectsDealing with One’s Own Death• Kübler-Ross’s theory includes five stages: – Denial – Anger – Bargaining – Depression – Acceptance• The first reaction is likely to be shock and disbelief. – Denial is a normal part of getting ready to die.• At some point people express anger as hostility, resentment, frustration, and envy.• In the bargaining phase, people look for a way out or a person sets a timetable.• When one can no longer deny the illness, feelings of depression become common.• In the acceptance stage, the person accepts the inevitability of death and often seems detached from the world and at peace. 18 of 36
  • 19. Thinking About Death: Personal AspectsKübler-Ross’s Stages of LossIt is important to note that: – Some people do not progress through all of these stages, and some people move through them at different rates. – People may be in more than one stage at a time and do not necessarily go through them in order. 19 of 36
  • 20. Thinking About Death: Personal AspectsA Contextual Theory of Dying• Stage theories assume some sort of underlying process for moving from one stage to another but do not clearly state what a person must do to move from one to the other.• A contextual theory of dying – Emphasizes the tasks and issues that a dying person must face, and although there may be no right way to die, there are better or worse ways of coping with death• Corr identified four dimension of tasks that must be faced. – Bodily needs, psychological security, interpersonal attachments, and spiritual energy and hope 20 of 36
  • 21. Thinking About Death: Personal AspectsDeath Anxiety• Death anxiety is essentially universal in Western culture. – However, defining and measuring it is difficult.• Several components have been identified, including: – Anxiety about pain – Body malfunction – Humiliation – Rejection – Nonbeing – Punishment – Interruption of goals – Negative impact on survivors• These components can be expressed at public, private, and unconscious levels. 21 of 36
  • 22. Thinking About Death: Personal AspectsLearning to Deal with Death Anxiety?• Demonstrated in many different ways, including: – Avoidance of things connected with death • Such as refusing to go to funerals – Directly challenging death • Such as engaging in dangerous sports• Less common ways to express death anxiety include: – Daydreaming – Changing one’s lifestyle – Using humor – Displacing anxiety onto work – Becoming a professional who deals with death 22 of 36
  • 23. Thinking About Death: Personal AspectsLearning to Deal With Death Anxiety• Several ways to deal with anxiety exist. – Living life to the fullest – Personal reflection – Death Education• Koestenbaum (1976) proposed several exercises. – Write your own obituary – Plan your death and funeral services – Consider that death could happen now 23 of 36
  • 24. End-of-Life IssuesLearning Objectives• What is a personal final scenario?• What are hospices, and what options do they provide?• How do people make their end-of-life intentions known? 24 of 36
  • 25. End-of-Life IssuesCreating a Final Scenario• End-of-life issues – Managing the final aspects of life – After-death disposition of the body and how one is memorialized—cremation or burial? – Distribution of assets• Making choices: what people do and do not want done – A crucial aspect of the final scenario is the process of separation from family and friends. • Bringing closure to relationships • Affirm love • Resolve conflicts 25 of 36
  • 26. End-of-Life IssuesThe Hospice OptionHospice An approach to assisting dying people that emphasizes pain management (palliative care) and death with dignity• Hospice care emphasizes quality of life rather than quantity of life. – The goal is a de-emphasis on the prolongation of death for terminally ill patients. – Both inpatient and outpatient hospices exist.• The role of the staff is to be with patients, not to do things for patients. 26 of 36
  • 27. End-of-Life IssuesThe Hospice Option• How do people decide to explore the hospice option? – Kastenbaum lists six key considerations: 2. Is the person completely informed about the nature and prognosis of his or her condition? 3. What options are available at this point in the progress of the person’s disease? 4. What are the person’s expectations, fears, and hopes? 5. How well do the people in the person’s social network communicate with each other? 6. Are family members available to participate actively in terminal care? 7. Is a high-quality hospice care program available? 27 of 36
  • 28. End-of-Life IssuesThe Hospice Option• How well do the people in the person’s social network communicate with each other? – Are family members available to participate actively in terminal care? – Is a high-quality hospice care program available?• Hospice provides an important end-of-life option for many terminally ill people and their families. – Moreover, the supportive follow-up services they provide are used by many surviving family and friends. – However, adults cannot benefit from hospice care unless: • Family reluctance to face the reality of terminal illness and participate in the decision-making process is changed. • Physician reluctance to approve hospice care for patients until the very end is changed. 28 of 36
  • 29. Survivors: The Grieving ProcessLearning Objectives• How do people experience the grief process?• What feelings do grieving people have?• What is the difference between normal and prolonged grief?• How do adults of different ages deal with loss? 29 of 36
  • 30. Survivors: The Grieving Process• Bereavement The state or condition caused by loss through death• Grief The sorrow, hurt, anger, guilt, confusion, or other feelings that arise after a loss• Mourning The way we express our grief • Mourning is heavily influenced by cultural norms. 30 of 36
  • 31. Survivors: The Grieving ProcessThe Grief Process• A complicated and personal process – Described as reflecting on many themes and issues that people confront• Unlike bereavement, over which we have no control, grief is a process that involves choices.• A person must: – Acknowledge the reality of the loss – Work through the emotional turmoil – Adjust to the environment where the deceased is absent – Loosen ties to the deceased• Grief is an active coping process. 31 of 36
  • 32. Survivors: The Grieving ProcessThe Grief Process• Risk Factors in Grief – That may make bereavement much more difficult• Sudden death vs. prolonged death – Anticipatory grief • People tend to disengage from the dying person. – Strength of attachment makes a difference • Strong attachment and sudden death causes greater grief. • Secure attachment results in less depression due to less guilt over unresolved issues.• Two interpersonal risk factors – Level of social support – Kinship: child most difficult, then spouse, then parent 32 of 36
  • 33. Survivors: The Grieving ProcessTwo Types of Grief Reactions• Uncomplicated (normal) – Sad, but able to resume daily functions• Complicated (prolonged) – Unable to cope and adapt to the death – Common manifestations a. Excessive guilt b. Self-blame – Three criteria 1. Yearnings and longing for the deceased 2. Number of overwhelming feelings 3. Marked dysfunction in social, occupational, & other important situations. (judgment errors, agitated depression, sleep & appetite problems. Intense recurring thoughts about the deceased) 33 of 36
  • 34. Normal Grief Reactions• Disbelief • Confusion• Denial • Helplessness• Shock • Emptiness• Sadness • Loneliness• Anger • Acceptance• Hatred • Relief• Guilt • Happiness• Fear • Lack of enthusiasm• Anxiety • Absence of emotion 34 of 36
  • 35. Survivors: The Grieving ProcessNormal Grief Reactions• Anniversary reaction – Grief that often returns around the anniversary of the death• Grief Over Time – Grief tends to peak within the first six months. – People can grieve many years after the loss.• Relationship between health and stress – Interventions may be more effective before the death.• Effects of normal grief on adults’ health – In general, experiencing the death of a loved one does not directly influence physical health. – Religiosity is thought to provide a support mechanism.• People who have a hard time coping tend to have low self-esteem before losing a loved one. 35 of 36
  • 36. The Grieving Process: Deaths that are Difficult to resolve• Death of a young child – Death of a young child produces intense grief and/or guilt, especially if unexpected• Death of a parent – Death of a parent has persistent long-term effects  reduction in love, affection, and attention they could receive – Early parental loss has life-long effects with children assuming adult roles, and possible financial strain• Death of an adult child – Un-timeliness of the death and destruction of the parents’ worldview – Loss of the child/parent bond – Survivor guilt – Strain in the parents’ marital relationship – Change in meaning for the future 36 of 36
  • 37. The Grieving Process: Deaths that are Difficult to resolve• Death of a sibling – Death of a sibling can be difficult since it is the family bond of longest duration – Siblings may feel responsible for the death due to feelings of survivor guilt• Suicide – Intense, overwhelming grief, hostility and feelings of rejection – Guilt - “I should have been able to recognize / prevent” – Females x2 more likely to attempt; males x2 as likely to succeed – Females – passive forms – pills, carbon dioxide, etc – Males – more violent forms, guns, hanging, knives, etc. – Survivors need social support and opportunity to share their grief – Because suicide carries negative social stigma, survivors are likely to become closed to discussion about death and their own reactions. 37 of 36
  • 38. 38 of 36
  • 39. Survivors: The Grieving Process• Funerals – Funeral costs have skyrocketed – Increasing numbers choose cremation – Many elderly pre-pay their own funeral expenses• The Grieving Process – Affects all aspects of survivors: emotional, physical, and behavioral reaction – Four phases: numbness, yearning, disorganization/despair, reorganization – Grief work has as its goal, the resolution of grief, which can be arrested if survivors do not go through the process successfully 39 of 36
  • 40. Survivors: The Grieving ProcessCoping with Grief• Numerous theories have been proposed to account for the grieving process. – General life event theories – Psychodynamic theories – Attachment theories – Cognitive process theories• The Dual Process Model 1. Loss-orientated stressors 2. Restoration-orientated stressors 40 of 36
  • 41. The Dual Process ModelStressors of the Moving on with loss its-self one’s life 41 of 36
  • 42. Survivors: The Grieving ProcessAdult Developmental Aspects of Grief• Death of One’s Child in Young and Middle Adulthood – Sudden Infant Death Syndrome (SIDS) – Loss of sons or daughters in war – Death in traffic accidents• Death of one’s Parent – Perceived as very significant regardless of age of parent• Death of One’s Child or Grandchild in Late Life – Loss of a child has profound, lifelong effects – Loss of a grand-child results in similar feelings, intense emotional, upset, survivor guilt, regrets about relationship, need to restructure with surviving children• Death of One’s Partner in Late Life – Older bereaved spouses may grieve a great deal. 42 of 36