Chapter Sixteen The Final Passage Introduction • Why is it so difficult to contemplate our death? • What is the grief process like? • How do people in different developmental stages experience the death of a loved one? 16.1 Definitions and Ethical Issues • Learning Objectives: – How is death defined? – What legal and medical criteria are used to determine when death occurs? – What are the ethical dilemmas surrounding euthanasia? Sociocultural Definitions of Death • All cultures have their own views of death • Mourning rituals differ from culture to culture – Examples: Orthodox Jews cover all the mirrors in a house; ancestor worship in many Asian cultures • Some of the most famous structures on Earth result from customs regarding death – Examples: Taj Mahal; Egyptian pyramids Legal and Medical Definitions • How do we determine that a person has died? – Clinical death: the lack of heartbeat/respiration • Standard definition for hundreds of years – Whole-brain death: several criteria • • • • • • No spontaneous movement in response to any stimuli No spontaneous respirations for at least one hour Total lack of responsiveness to painful stimuli No eye movements, blinking, or pupil responses No postural activity, yawning, or swallowing No motor reflexes Legal and Medical Definitions (cont’d.) – Whole-brain death (cont’d.) • A flat EEG for at least 10 minutes • No change in any of these criteria when tested 24 hours later • Whole-brain standard is used everywhere in the U.S. • Some medical professionals call for a single assessment or a simpler one • Some religions find brain death controversial Legal and Medical Definitions (cont’d.) • Persistent vegetative state: situation in which a person’s cortical functioning ceases while brainstem activity continues – Person does not recover – Does not allow for consciousness – Family members face difficult ethical decisions regarding what to do for the person Ethical Issues • Bioethics: the study of the interface between human values and technological advances in health and life sciences – Based on respect for individual freedom and the impossibility of establishing any single version of morality from rational argument or common sense – People must weigh the benefits and harms regarding keeping one in a persistent vegetative state, beginning risky treatment, etc. Ethical Issues (cont’d.) • Euthanasia: the practice of ending life for reasons of mercy – Usually is a scenario when a person is being kept alive by machines or has a terminal illness – Should a person be able to make the judgment that another’s life should end? – Active euthanasia: the deliberate ending of someone’s life • Example: administering a drug overdose Ethical Issues (cont’d.) • Euthanasia (cont’d.) – Passive euthanasia: allowing a person to die by withholding available treatment • Example: disconnecting a ventilator, not getting chemotherapy treatments, etc. – There is controversy regarding whether there really is a difference between active and passive euthanasia – Many people in the U.S. have religious reasons for not supporting euthanasia, especially active forms Ethical Issues (cont’d.) • Euthanasia (cont’d.) – Western Europeans tend to view active euthanasia positively; Eastern Europeans and Muslims tend not to – Cases regarding euthanasia often end up in court • Example: Terry Schiavo in Florida • Physician-assisted suicide: the process in which physicians provide dying patients with a fatal dose of medication that the patient selfadministers Ethical Issues (cont’d.) • Physician-assisted suicide (cont’d.) – Most people support it for terminally ill people in great pain – The Netherlands became the first country to officially legalize physician-assisted suicide – Oregon and Washington have laws that support it, with some restrictions • Three requests must be made by the patient, spaced three days apart • Screen for issues such as depression Ethical Issues (cont’d.) Number of Oregon Death With Dignity Act prescription (Rx) recipients and deaths, 1998– 2010. Ethical Issues (cont’d.) • Most people fail to tell family members what they want to happen to them at the end of their lives • How does one make intentions known? – Living will: a document in which a person states his or her wishes about life support and other treatments – Durable power of attorney for health care: person appoints another to act as his or her agent for health care decisions Ethical Issues (cont’d.) • In order for legal methods to work, relatives and physicians must know about the existence of these documents and where they are • Do not resuscitate (DNR) order: a medical order that means CPR is not started should the heart and breathing stop – Medical teams usually initiate CPR right away 16.2 Thinking About Death: Personal Aspects • Learning Objectives: – How do feelings about death change over adulthood? – How do people deal with their own death? – What is death anxiety? • How do people show it? – How do people deal with end-of-life issues and create a final scenario? – What is hospice? A Life-Course Approach to Dying • Why do people start thinking about their own mortality at midlife? – Start to think about how long they have left to live • Can lead to changes in occupation or strengthening relationships • Older adults are usually more accepting of death and less anxious about it than other age groups Dealing with One’s Own Death • The trajectory of death depends on the type of illness (see Figure 16.2) – Green line: clear and rapid period of decline – Red line: conditions with some periods of rapid decline followed by recovery, but with a general decline over a period of time – Gold line: a long-term chronic condition that results in death • What are some examples of each of these? Dealing with One’s Own Death (cont’d.) The three main trajectories of decline at the end of life. Dealing with One’s Own Death (cont’d.) • Kübler-Ross described five reactions that represent the ways people deal with the process of death: – Denial, anger, bargaining, depression, and acceptance • Not everyone experiences in the same order if at all • Corr identified four dimensions of the types of tasks dying people must face: – Bodily needs, psychological security, interpersonal attachments, and spiritual energy and hope Dealing with One’s Own Death (cont’d.) • Corr’s theory (cont’d.) – A holistic approach that recognizes the coping efforts of family member and caregivers as well as the dying person • Kastenbaum and Thuell emphasize the socioenvironmental context within which dying occurs – Example: does moving from independent living to an assisted care facility influence how the person copes with dying? Death Anxiety • Death anxiety: people’s anxiety or fear of death and dying • Terror management theory: addresses the issue of why people engage in certain behaviors in order to achieve particular psychological states based on their concerns about mortality – Assumes that a person’s primary motive is continuing his or her life Death Anxiety (cont’d.) • Brain activity in the right amygdala, cingulate cortex, and the right caudate nucleus is associated with death anxiety • Why might people express different feelings about death in public as compared to their thoughts when they are alone? • Some degree of death anxiety is appropriate, but too much can interrupt daily functioning and routines Death Anxiety (cont’d.) • How do people deal with death anxiety? – Teenagers often engage in risky behaviors and “live life to the fullest” – Exercises such as writing your own obituary can help lower death anxiety – Death education programs exist to combine presenting factual information about death and reducing people’s fears and anxiety Creating a Final Scenario • End-of-life issues: management of the final phase of life, after-death disposition of their body and memorial services, and distribution of assets – Most people want to discuss arrangements if given the chance – Allows one to consider traditional care and alternatives – People can make a will to make sure their wishes are carried out Creating a Final Scenario (cont’d.) • End-of-life issues (cont’d.): – Final scenario: people making their choices known about how they do and do not want their life to end • Affirming love and resolving conflicts in relationships is an important part of this process • Health care workers recognize the importance of the final scenario and give patients the chance to create one • Helps family and friends to interpret the person’s death and open communication The Hospice Option A hospice worker describes her experiences as a caregiver to patients who are dying. The Hospice Option (cont’d.) • Hospice: an approach that assists dying people that emphasizes pain management, or palliative care, and death with dignity – Make the person as peaceful and comfortable as possible, not delay an inevitable death – Palliative care: focused on providing relief from pain and other symptoms of disease at any point during the disease process – Hospice care focuses on the client and family and helps them to approach death The Hospice Option (cont’d.) • How is hospice care different from care a patient would receive in the hospital? • People usually decide on hospice care when they have cancer, AIDS, cardiovascular disease, or other terminal conditions, and when they are in their last six months of life – Trust in one’s physician is important in selecting hospice care – 2/3 of hospice patients are over age 65 The Hospice Option (cont’d.) • What do families need to consider before choosing hospice? – Is the person completely informed about the prognosis of her condition? – What options are available at this point in the progress of the disease? – What are the person’s expectations, fears, and hopes? – Do people in the person’s social network communicate well with each other? The Hospice Option (cont’d.) • What families need to consider (cont’d.): – Are family members available to participate actively in terminal care? – Is a high-quality hospice care program available? – Is hospice covered by insurance? • Traditional medicine has been influenced by hospice: pain management interventions • Family members should honor the dying person’s wish for hospice or alternatives 16.3 Surviving the Loss • Learning Objectives: – How do people experience the grief process? – What feelings do grieving people have? – What is the difference between typical and prolonged grief? Surviving the Loss (cont’d.) • Bereavement: the state or condition caused by loss through death • Grief: the sorrow, hurt, anger, guilt, confusion, and other feelings that arise after experiencing a loss • Mourning: the ways in which we express our grief – Highly influenced by culture – Wearing black, attending funerals, etc. Surviving the Loss (cont’d.) The Grief Process Learn about the ups and downs of the grieving process by hearing one family’s story of tragedy, loss, and forgiveness. The Grief Process (cont’d.) • There is no right way to grieve – However, all of us confront certain issues • Grief involves changes in coping and is an active process that deals with: – Acknowledging the reality of the loss – Working through emotional turmoil – Adjusting to an environment in which the deceased is absent – Loosening ties to the deceased The Grief Process (cont’d.) • Grieving is a highly individual experience – Usually takes at least a year to recover from the loss, sometimes two – People usually do not recover from the loss; they learn to live with it • It is helpful to let a grieving person know that you are sorry for his loss, you are there for support, and that you truly mean it Typical Grief Reactions • Sadness, denial, anger, loneliness, and guilt are typical reactions to grief • Grief work: the psychological side of coming to terms with bereavement – Survivors need time to express the many feelings that they have – Five themes emerge during the process that deal with one’s feelings as a survivor and their memories of the deceased person • Coping, affect, change, narrative, and relationship Typical Grief Reactions (cont’d.) • Physiological reactions to grief exist – Sleep disturbances and neurological/circulatory problems have been reported among widows • Anniversary reaction: changes in behavior related to feelings of sadness on the anniversary date of a loss • Grief can last a long time, but people generally move on with their lives after a short period of time and deal with their feelings well Coping with Grief • Two integrative approaches to grief: – Four-component model and dual-process model • In the four-component model, understanding grief is based on: – The context of the loss – The continuation of subjective meaning associated with the loss – Changing representations of lost relationship – The role of coping and emotion regulation processes Coping with Grief (cont’d.) • The four-component model posits that: – Dealing with grief is a complicated process that can only be understood through as a complex outcome that unfolds over time – Helping grieving people involves helping them make meaning from the loss – Encouraging people to express grief may not be helpful Coping with Grief (cont’d.) • Grief-work-as-rumination hypothesis: – Views extensive grief processing as a form of rumination that may increase distress • The dual-process model (DPM) of coping with bereavement: – Integrates loss-oriented stressors, concerning the loss itself, and restoration-oriented stressors, related to moving on with life Coping with Grief (cont’d.) • The dual-process model (DPM): – Posits that dealing with stressors is a dynamic process • See Figure 16.4 – Explains how it is possible for people to be overwhelmed with grief one day and handling life well the next Coping with Grief (cont’d.) The DPM of coping with bereavement shows the relationship between dealing with the stresses of the loss itself (loss oriented) and moving on with life (restoration oriented). Complicated or Prolonged Grief Disorder • Complicated or prolonged grief disorder: distinguished from depression and normal grief in terms of separation distress and traumatic distress • Separation distress – Symptoms include preoccupation with the deceased to the point where it interferes with daily functioning, upsetting memories of the deceased, longing and searching for the deceased, and isolation Complicated or Prolonged Grief Disorder (cont’d.) • Traumatic distress – Symptoms include disbelief about the death; mistrust, anger, and detachment from others as a result of the death; feeling shocked by the death; and experiencing the physical presence of the deceased • How might complicated grief cause problems in social relationships? 16.4 Dying and Bereavement Experiences Across the Life Span • Learning Objectives: – What do children understand about death? • How should adults help them deal with it? – How do adolescents deal with death? – How do adults deal with death? • What are the special issues they face concerning the death of a child or parent? – How do older adults face their own death or the loss of a child, grandchild, or partner? Dying and Bereavement Experiences Across the Life Span (cont’d.) • American society tends to distance itself from death – Uses euphemisms such as “passed away” – Eliminates many rituals • How can people learn about death in its natural context? Childhood • At 5-7 years of age, children realize that death is permanent, it happens to everyone, and biological functions cease to exist – Cognitive-language ability, psychosocial development, and coping skills are involved in this understanding • Bereavement in childhood does not usually have long-lasting effects – Openness and honesty about the meaning of death are important Childhood (cont’d.) • Explanations regarding death should be kept simple to facilitate understanding • Children need to know that it is okay to feel sad and show their feelings • Researchers believe it is important for children to attend the funeral of a loved one or have a private viewing Adolescence • 40%-70% of college-age students experience a death of someone close to them • Teenagers sometimes have trouble making sense of a death • Bereavement sometimes involves chronic illness, guilt, low self-esteem, poor school/job performance, and substance abuse – Particularly if the loss was unexpected – Personal growth usually follows long-term Adulthood • Many young adults believe that their peers who die are cheated out of their future • Losing one’s partner in young adulthood is very traumatic and usually unexpected – Desire to stay connected through memories – Must challenge basic assumptions about the self, relationships, and life options • Surviving spouses usually start transforming perspectives by the one-year anniversary Adulthood (cont’d.) • Losing one’s child is perhaps the worst type of loss – Many parents never recover and may end their relationship – High anxiety, problems in functioning, and disrupted relationships with other children are common problems, depending on the cause of death – Parents who lose children through stillbirth, abortion, or neonatal death are often overlooked Adulthood (cont’d.) • Losing one’s parent often leads to redefining relationships with other family members • Losing a parent at a young age can lead to worries about dying young • When an older parent dies, the adult child is usually more accepting of death and happy that the parent’s suffering is over Late Adulthood (cont’d.) • Older people usually experience deaths of those close to them as traumatic • The loss of a child still causes intense grief that can last decades – Affects relationships with surviving children • Losing a grandchild also causes emotional upset, guilt, and regrets – Tend to control and hide grief behavior to shield their child (the parent) Late Adulthood (cont’d.) • Losing a partner in late-life is a deeply personal loss – Grief can occur for as long as 30 months • Survivors with close confidants are better off than those with many acquaintances • Bereaved widows and widowers tend to give their marriages more positive ratings than the nonbereaved – See Figure 16.5 Late Adulthood (cont’d.) In general, bereaved spouses rate their marriages more positively than nonbereaved spouses, and they tend to be more positive the more depressed they are after the loss. Late Adulthood (cont’d.) • Older women tend to sanctify their deceased husbands – Serves to validate that the marriage was strong, show that the widow is a good and worthy person, and that she is capable of rebuilding her life • Gay and lesbian couples often face other feelings and reactions on top of normal grief – Family members may not make the partner feel welcomed at the funeral • Makes achieving a sense of closure difficult Conclusion • We understand death through an interaction of psychological and sociocultural forces • As with the beginning of life, death is also a complex interaction of biological, psychological, sociocultural, and life-cycle factors – Perspectives on what happens after death is also an interaction of these factors