1. CHAPTER NINETEEN DEATH, DYING, AND BEREAVEMENT

2. I. THE EXPERIENCE OF DEATH Most of us use the word death as if it describes a simple phenomenon In fact, death is a process as well as a state, and physicians have different labels for different aspects of this process

3. A. Death Itself Clinical death: a period during which vital signs are absent but resuscitation is still possible – Presumably, near death experiences occur in this state Brain death: absence of vital signs, including brain activity; resuscitation is no longer possible – The person is considered legally dead Social death: the point at which family members and medical personnel treat the deceased person as a corpse – Family and friends must begin to deal with the loss

4. B. End-of-Life Care Hospital Care: – In Canada, the majority of deaths (60%) occur in hospitals Hospice Palliative Care: – A holistic approach to care for the terminally ill that emphasizes individual and family control of the process of dying – Emerged in England in the late 1960s and in Canada in the mid-1970s – Death with dignity is more likely if the dying person remains at home, or in a home-like setting in which contact with family and friends is part of the daily experience (continued)

5. End-of-Life Care (continued) The Hospice Care philosophy: Death should be viewed as normal The patient and family should be encouraged to prepare for the death The family should be involved in the patient's care Control over the patient's care should be in the hands of the patient and the family Care is aimed at satisfying the physical, emotional, spiritual, and psychosocial needs of a person with a life-threatening or terminal condition and their family Medical care should be primarily palliative care rather than curative. The emphasis is on controlling pain and maximizing comfort, but not in invasive or life-prolonging measures (continued)

6. End-of-Life Care (continued) Hospice Palliative Care – Palliative care: a form of care for the terminally ill that focuses on relieving patients’ pain, rather than curing their diseases – Hospice palliative care helps dying patients and their families to: Address physical, psychological, social, spiritual, and practical issues and their associated expectations, needs, hopes, and fears Prepare for and manage self-determined life closure and the dying process Cope with loss and grief during illness and bereavement (continued)

7. End-of-Life Care (continued) Caregiver Support: – Caregivers for dying patients have a considerable burden, including a grief response – Hospice care includes psychosocial and educational support – Canadian Virtual Hospice enables health care professionals to interact directly with informal care providers provides access to a range of palliative hospice care services brings medical expertise to the home and to rural and remote areas of Canada

8. II. THE MEANING OF DEATH ACROSS THE LIFESPAN As an adult, you understand that death is irreversible, that it comes to everyone, and that it means a cessation of all function Children, teenagers, and adults of different ages differ in their understanding of these aspects of death

9. A. Children's and Adolescents' Understanding of Death Preschool-age children do not understand that: – death is irreversible – it comes to everyone – it means a cessation of all function Teaching young children about the nature of biological life helps them understand what causes death and why it is irreversible By the age of 9, most children seem to understand both the permanence and universality of death (continued)

10. Children's and Adolescents' Understanding of Death (continued) Adolescents understand the finality of death better than children do, and, in an abstract sense, they understand that death is inevitable Unrealistic beliefs about personal death appear to contribute to adolescent suicide (e.g. death is a pleasurable experience) Like those of children, adolescents’ ideas about death are affected by their personal experiences

11. B. The Meaning of Death for Adults Early Adulthood: – The sudden loss of a loved one appears to shake a young adult's belief in their unique invulnerability and, as a result, is often more traumatic for younger, than for older, adults – Personal experience changes perception of death Experience with death (for example in a healthcare profession) may make it less fearful Loss of a loved one frequently leads to suicidal thoughts – The deaths of relatively young public figures challenge young people's beliefs in unique invulnerability Young adults look for reasons that death came early to these people, but won’t affect themselves (continued)

12. The Meaning of Death for Adults (continued) Middle and Late Adulthood: – A death changes the roles and relationships of everyone else in a family, as well as the people beyond the family – Death brings permanent changes in families and social systems – In middle age, many individuals switch the way they think about time, from "time since birth" to "time until death” – Those middle-aged and older adults who continue to be preoccupied with the past are more likely to be fearful and anxious about death

13. C. Fear of Death Wong suggests that our fear of death stems from six existential uncertainties 1.The finality of death 2.The uncertainty of what follows 3.Annihilation anxiety or fear of non-existence 4.The ultimate loss 5.Fear of the pain and loneliness in dying 6.Fear of failing to complete life work (continued)

14. Sources of Fear of Death

15. Fear of Death (continued) Fear of Death Across Adulthood: – For young adults, the sense of unique invulnerability probably prevents intense fears of death – Middle-aged adults are most fearful of death – In middle-age, a belief in one's own immortality begins to break down, resulting in increasing anxiety about the end of life – By late life, the inevitability of death has been accepted, and anxieties are focused on how death will actually come about – Older adults are more likely to fear the period of uncertainty before death than they are to fear death itself (continued)

16. Fear of Death (continued) Religious Beliefs: – Both those who are deeply religious and those who are totally irreligious report less fear of death – The most fearful may be those who are uncertain about or uncommitted to any religious or philosophical tradition – Religious beliefs may moderate fears of death Death is seen as a transition from one form of life to another The belief that God exists increases with age – Ley and van Bommel: the spiritual search for meaning in our lives is often intensified by the reality of death: an important aspect in palliative care (continued)

17. Prevalence of Beliefs in God

18. Fear of Death (continued) Personal Worth: – Adults who have accomplished goals or believe they have become the person they set out to be have less fear of death – Belief that life has purpose or meaning reduces the fear of death – Fear of death may be an aspect of the despair described in Ericson’s theory of ego integrity versus despair

19. D. Preparation for Death Practical preparation may include obtaining life insurance or making a will, preparations that are more common as people move toward late adulthood and more accepting of the inevitability of death At a somewhat deeper level, adults may prepare for death through some process of reminiscence Deeper still, there may be unconscious changes that occur in the years just before death that we might think of as a type of preparation (continued)

20. Preparation for Death (continued) The physical and mental changes associated with the concept of terminal drop may be accompanied by terminal psychological changes as well Lieberman et al showed that people nearer to death became less emotional, introspective, and aggressive or assertive, and more conventional, docile, dependent, and warm – People with these personality traits didn’t die sooner; rather, these qualities became accentuated in those close to death Sharp declines in life satisfaction have been found starting in the 4 years prior to death

21. III.THE PROCESS OF DYING In the 1960s, Kübler-Ross formulated a model that asserted that those who are dying go through a series of psychological stages In addition, research suggests that individual differences affect the process of dying in important ways

22. A. Kübler-Ross's Stages of Dying Denial: Many people confronted with a terminal diagnosis react with some form of denial, a psychological defence that may be useful in the early hours and days after such a diagnosis Anger: Anger often expresses itself in thoughts that life is not fair, but may also be expressed toward God, or toward doctors, nurses, or family members Bargaining: The patient in stage 3 tries to make "deals" with doctors, nurses, family, or God Depression: When bargaining fails as a result of declining physical status, the patient sinks into depression Acceptance: Kübler-Ross views this depression as a necessary preparation for the final step of acceptance since a person must grieve for all that will be lost with death. When such grieving is finally done, the individual is ready to die

23. B. Criticisms & Alternative Views Kübler-Ross's observations might be correct only for a small subset of dying individuals (i.e. mostly adult cancer patients with Westernized, individualistic cultural values) because her hypothesis was only based on this sample (continued)

24. Criticisms & Alternative Views (continued) The Stage Concept – Many clinicians and researchers have found that not all dying patients exhibit these five emotions, let alone in a specific order – Schneiderman suggests themes to the dying process, rather than stages – Corr suggests 4 tasks for the dying person Health professionals may be able to help the dying person achieve these tasks

25. C. Responses to Impending Death Do attitudes and behavioural choices have any effect on the physical process of dying? Greer classified women's attitudes three months after they were diagnosed with breast cancer: – Denial (positive avoidance) – Fighting spirit – Stoic acceptance (fatalism) – Helplessness/hopelessness – Anxious preoccupation Those whose initial reaction was fighting spirit were less likely to die of cancer (continued)

26. Responses to Impending Death (continued) Canadian cancer psychologist Alistair Cunningham and colleagues have investigated the impact of psychological self-help on survival rates among medically incurable cancer patients The third of patients who became most engaged in self-help lived much longer (about three times on average) than the third who were least engaged There is a growing body of evidence suggesting that suffering can be lessened while survival can be prolonged by psychological interventions

27. Median Years of Survival by Level of Involvement in Self-Help

28. IV. THE EXPERIENCE OF GRIEVING In virtually every culture, the immediate response to a death is some kind of funeral ritual A death ritual, however, is only the first step in the process of grieving (the emotional response to a death) that may take months or years to complete

29. A. Psychosocial Functions of Death Rituals Funerals, wakes, and other death rituals provide several psychological functions: – They help family members manage their grief by giving them a specific set of roles to play, providing shape to the first hours and days – They bring family members together; they can strengthen family ties, clarify the new lines of influence or authority within a family, and pass on the flame in some way to the next generation – They may help survivors understand the meaning of death itself, in part by emphasizing the meaning of the life of the person who has died – They may give some transcendent meaning to death itself by placing it in some philosophical or religious context

30. B. The Process of Grieving Age of the Bereaved: – Children express feeling of grief very much the way teens and adults do—through sad facial expressions, crying, loss of appetite, and age- appropriate displays of anger – Funerals seem to serve the same adaptive function for children as for adults, and most children resolve their feeling of grief within the first year after the loss – Knowing that a loved one is ill and in danger helps children cope with the loss in advance, just as it does for those who are older – Teens may be more likely to experience prolonged grief than children or adults (continued)

31. The Process of Grieving (continued) Mode of Death: – Widows who have cared for spouses during a period of illness prior to death are less likely to become depressed after the death – A death that has intrinsic meaning provides the bereaved with a sense that the death has not been without purpose – Sudden and violent deaths evoke more intense grief responses – Suicide produces unique responses among survivors: They experience feelings of rejection and anger They may feel that they could have done something to prevent the suicide They are less likely to discuss the loss Suicide survivors may be more likely to experience long-term negative effects

32. C. Widowhood Widowhood and Physical Health: – Immune system functions are suppressed somewhat immediately after the death – Most return to normal by a year after the death – The immune dysfunction can last beyond obvious signs of grief Widowhood and Mental Health: – In the year following bereavement, the incidence of depression among widows and widowers rises substantially, while rates of death and disease rise only slightly (continued)

33. Widowhood (continued) Pathological Grief: – Grief symptoms for more than two months following the loss of a loved one may indicate pathological grief – Grief lasting longer than 6 months can lead to long-term depression and physical ailments such as cancer and heart disease – Problems may continue for up to 2 years after the death of the loved one – Cultural grief behaviour must be taken into account (continued)

34. Widowhood (continued) Sex differences: Death of a spouse is more negative for men than for women – Risk of death from natural causes or suicide is higher in men immediately after the death of spouse Widowers find it difficult to return to earlier levels of emotional functioning Widowers withdraw from social activities Alcohol use may play a role in higher levels of depression (continued)

35. Widowhood (continued) Preventing Long-Term Problems: – The "talk-it-out" approach to managing grief can be helpful in preventing grief-related depression – Participating in support groups helps – Developing a coherent personal narrative of the events surrounding the spouse’s death helps manage grief – Appropriate amount of time off from work to grieve is important Returning to work too soon can contribute to illness and depression

36. Policy Question: Do People Have a Right to Die? Most medical ethicists distinguish between two forms of euthanasia (also known as “mercy killing”) – Passive euthanasia: the withholding of life supporting interventions – Active euthanasia (also called assisted suicide): hastening death by active means (continued)

37. Policy Question (continued) Living Wills: – Most people agree that individuals should be able to determine the degree to which life-support technology will be used to delay their own deaths – All Canadian provinces except New Brunswick have legislation that recognizes the directives expressed in living wills – Living wills usually contain two elements: A proxy directive (who will act for you if you can not act for yourself) An instruction directive (choices you have made about end-of-life care) (continued)

38. Policy Question (continued) Assisted Suicide: – A 2007 Ipsos-Reid poll found that three-quarters (76%) of Canadians surveyed support the notion of the patient’s “right to die” – Euthanasia and assisted suicide are still illegal in Canada. Doctors also have a legal obligation to prevent patients from harming themselves in a case where there is a risk of suicide – The only places in the world where assisted suicide is fully and explicitly legal are the Netherlands, Belgium, Switzerland, and the State of Oregon (continued)

39. Policy Question (continued) Opponents of assisted suicide consider it to be an immoral act, similar to suicide – The ‘slippery slope’ argument states that it is difficult to set limits on the process If assisted suicide were considered to be moral, the infirm or severely disabled might be encouraged to end their lives – Van Bommel argues that if all dying patients’ needs were met, assisted suicide would be unnecessary – Those who decline medical treatment are not necessarily interested in hastening death – Terminally ill patients’ depression may play a role in their decision to request assisted suicide (continued)

40. Policy Question (continued) Advocates of assisted suicide note that current medical technology can keep people alive long past the point where natural death would have occurred Advocates say patients who are not able to carry out their own suicide require (and should have) the help of a physician Is assisted suicide equivalent to death with dignity?