Chapter 12: Death and Dying Process Notes PDF

Chapter 12: Death and the Dying Process, Bereavement, and Widowhood Copyright © Springer Publishing Company, LLC. All Rights Reserved. Introduction  Familial, societal, and cultural norms provide the context for understanding the how, when, and where of...

Chapter 12: Death and the Dying Process, Bereavement, and Widowhood Copyright © Springer Publishing Company, LLC. All Rights Reserved. Introduction  Familial, societal, and cultural norms provide the context for understanding the how, when, and where of our deaths as well as our experiences of bereavement and grief.  Yet, each person prepares for death and faces it differently. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Definition of Death  When the function of the entire brain, including brain stem and neocortex, ceases (Keely et al., 1980).  The leading causes of death in the United States in 2012 were chronic conditions such as heart disease and cancer, accounting for 46.5% of all deaths.  Chronic respiratory disease and stroke were third and fourth. Keely, G. C., McGill Gorsuch, A., McCabe, J. M., Wood, W. H., King Hill, M., Pierce, W. J., & Langrock, P. F. (1980). Uniform determination of Death Act. Presented at the meeting of the National Conference of Commissioners on Uniform State Law, Kauai, Hawaii. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Definition of Death (cont’d)  Acute conditions have become less common causes of death; acute infections (influenza and pneumonia) are the eighth most common causes of death. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Where Americans Die  Prior to 1900, the multigenerational family assumed responsibility for all activities surrounding death and the majority of people died at home (Corr, Nabe, & Corr, 2009).  In contrast, approximately 43% of all U.S. deaths between 1999 and 2013 occurred in medical facilities (Centers for Disease Control and Prevention, National Center for Health Statistics, 2015). Centers for Disease Control and Prevention, National Center for Health Statistics. (2015). Underlying Cause of Death 1999-2013. Retrieved from http://wonder.cdc.gov/ucd-icd10.html Corr, C., Nabe, C. M., & Corr, D. M. (2009). Death and dying, life and living (6th ed.). Belmont, CA: Wadsworth. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Where Americans Die (cont’d)  An additional 22% of U.S. deaths occurred in a nursing home or long-term care facility compared to 25% who died at home. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Four Common Trajectories of Death  Sudden death  Terminal illness: Certain kinds of cancer, in which people maintain high functional status that rapidly declines  Organ failure: Chronic obstructive pulmonary disease, congestive heart failure. Gradually decreasing functional ability.  Frailty: Slow decline of functional ability (e.g., Alzheimer’s disease).  (Lunney, Lynn, & Hogan, 2002) Lunney, J. R., Lynn, J., & Hogan, C. (2002). Profiles of older Medicare decedents. Journal of the American Geriatrics Society, 50(6), 1108–1112. doi:10.1046/j.1532-5415.2002.50268.x Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Common Physical Occurrences Near Death  Loss of appetite and thirst  Sleeping much of the time  Weakness, confusion, disorientation  Loss of bowel and bladder control  Limbs cold to the touch  Breathing more labored or shallow  As person loses ability to reabsorb or swallow fluids in chest and throat, a gurgling sound occurs when breathing (“death rattle”). Copyright © Springer Publishing Company, LLC. All Rights Reserved. Attitudes Toward Death  Fear of death is found across cultures.  Death anxiety decreases over adulthood.  Some studies find that highly religious people fear death less than nonreligious people (Daaleman & Dobbs, 2010; Harding et al., 2005), whereas other studies find that highly religious people fear death more (Power & Smith, 2008). Daaleman, T. P., & Dobbs, D. (2010). Religiosity, spirituality, and death attitudes in chronically ill older adults. Research on Aging, 32, 224–243. Harding, S. R., Flannelly, K. J., Weaver, A. J., & Costa, A. J. (2005). The influence of religion on death anxiety and death acceptance. Mental Health, Religion & Culture, 8, 253–261. Power, T. L., & Smith, S. M. (2008). Predictors of fear of death and self mortality: An Atlantic Canadian perspective. Death Studies, 32, 253–272. doi:10.1080/07481180701880935 Copyright © Springer Publishing Company, LLC. All Rights Reserved. Attitudes Toward Death (cont’d)  Death anxiety decreases with understanding of the death process.  Kübler-Ross’s On Death and Dying (1969) proposed five stages, or experiences, people have before death: Denial, anger, bargaining, depression, and acceptance. Kübler-Ross, E. (1969). On death and dying. New York, NY: Macmillian. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Attitudes Toward Death (cont’d)  Anticipatory mourning (Rando, 2000)—Reactions and coping processes experienced during a life-limiting illness, including anticipation of future losses.  Gerotranscendence (Tornstam, 2005)—Complex process in which an older adult may withdraw to contemplate meaning from a less material-based perspective. Rando, T. A. (Ed.). (2000). Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones, and their caregivers. Champaign, IL: Research Press. Tornstam, L. (2005). Gerotranscendence: A developmental theory of positive aging. New York, NY: Springer. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Advanced Care Planning  A broad term describing various processes through which someone communicates choices about future end-of-life decisions.  Can be communicated informally through discussion or documented advance directives.  Most common advance directives include completing a “living will” and appointment of a durable power of attorney (DPOA). Copyright © Springer Publishing Company, LLC. All Rights Reserved. Advanced Care Planning (cont’d)  Living will includes documentation of wishes regarding life-sustaining treatments such as mechanical ventilation, artificial nutrition, or antibiotics. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Patient Self-Determination Act of 1990  Patients have the right to facilitate their health care decisions, accept or refuse medical treatments, and complete an advance directive.  Institutions are required to inquire about whether a person has completed an advance directive and to document its presence in a medical record.  Applies to all health care institutions receiving federal funds such as Medicare or Veterans Health Care facilities. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Advance Directives  Despite ability to make wishes known in advance, people often wait until a medical crisis before considering their preferences.  Among adults aged 18 and older, 26.3% had an advance directive (Rao et al., 2014).  Among older adults, 37.2% had an advance directive (Hopp, 2000). Hopp, F. P. (2000). Preferences for surrogate decision makers, informal communication, and advance directives among community-dwelling elders: Results from a National Study. The Gerontologist, 40(4), 449–457. doi:10.1093/geront/40.4.449 Rao, J. K., Anderson, L. A., Lin, F., & Laux, J. P. (2014). Completion of advance directives among U.S. consumers. American Journal of Preventive Medicine, 46(1), 65–70. doi:10.1016/j.amepre.2013.09.008 Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Advance Directives (cont’d)  African American, Hispanic American, Asian American, and Native Americans are less likely to make a documented advance care plan or to know about advance directives. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Why Might People Not Make Advance Directives?  Preference for more aggressive care at end of life.  Distrust in the health care system.  Preference for family to communicate wishes rather than using a written document.  Belief that one should not interfere with a higher power’s control over timing and nature of death.  Cultural taboo against openly discussing or planning for death.  Lower health literacy among less privileged populations. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Palliative and Hospice Care Figure 12.1. Continuum of care. Source: EPEC (Education for Physicians on End-of-Life Care) Participant’s Handbook. The Robert Wood Johnson Foundation/American Medical Association. © The EPEC Project, 1999. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Palliative and Hospice Care (cont’d)  Palliative care: Focused on treatment of any conditions that are life-limiting at any point in the disease trajectory without limiting curative approaches. Its goal is to improve the quality of life of patients and their families by focusing on assessment and treatment of physical, psychosocial, and spiritual needs. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Palliative and Hospice Care (cont’d)  Hospice care: A special type of comprehensive palliative care provided during the last 6 months of life when an individual has chosen to forgo aggressive, life- prolonging treatments and focus on quality-of-life care (Hiroto & Kasl-Godley, 2013). Hiroto, K., & Kasl-Godley, J. (2013). Health care teams working with people near the end of life. In J. L. Werth, Jr. (Ed.), Counseling clients near the end of life (pp. 75–100). New York, NY: Springer Publishing. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Palliative Care  Most often provided by a team of health care workers comprised of a physician, nurse, social worker, chaplain, psychologists, pharmacists, dietitians, occupational or physical therapists, and volunteers.  The needs of individuals with advanced illness and their families require the expertise of multiple disciplines.  The degree of success in meeting client needs may also depend upon the system where care is provided, the type of team, and the dynamics of the team. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Benefit of Palliative Care  Dying individuals receive unnecessary and invasive physical interventions, multiple and prolonged hospitalizations, economic burdens, pain, fatigue, sleep problems, delirium, depression, anxiety, constipation, and breathing difficulties.  These problems are reduced in palliative care: Palliative care is related to reduced symptom burden, higher well- being, decreased intensity of treatment near end of life, and increased family satisfaction with care. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Palliative Care Is Underutilized  Providers and families may be reluctant to discuss It— may perceive a referral to palliative or hospice care as “giving up” or that there is no hope.  Patients often do not understand difference between palliative care and hospice care.  Palliative care team members spend considerable time explaining that patients can continue receiving curative treatment while in palliative care. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Other Factors Leading to Underutilization of Palliative Care  Lower health care literacy  Experiencing discriminatory health care practices and behaviors (based on age, race, ethnicity, gender, sexual orientation, or transgender status).  Beliefs that suffering is a necessary part of death.  Lack of access to medical care. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Hastening Death Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Physician-Assisted Suicide Versus Euthanasia  Physician-assisted suicide: When a physician provides the means for a person to end her or his life. Legal or tolerated in many countries and several states.  Euthanasia: Deliberate termination of life performed by a physician. Illegal in the United States.  Oregon was first state to pass physician-assisted suicide legislation in 1994, with Death with Dignity Act that took effect in 1997. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Oregon’s Death With Dignity Act  Permits Oregon residents to voluntarily end their lives with self-administration of lethal drugs prescribed by a licensed Oregon physician.  Oregon resident must have a terminal illness with less than 6 months to live, be capable of making informed health care decisions, and must be acting voluntarily.  States with a Death with Dignity law as of 2017: California, Colorado, District of Columbia, Oregon, Vermont, and Washington. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Opposition to Physician- Assisted Suicide Laws  Religious traditions oppose laws that violate the sanctity of life and questions the sovereignty of their deity.  American Medical Association states that physician- assisted suicide is “fundamentally incompatible with the physician’s role as a healer” and that physicians should focus instead on providing optimal treatment at end of life.  Is suicidal intent a sign of diminished capacity and a symptom to be treated, or a choice to support? Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Support for Physician- Assisted Suicide Laws  Supporters claim that patients with terminal illnesses are comforted to know that this option exists.  The vow to “do no harm” includes preventing suffering.  Arguments that society should instead provide better access to hospice and palliative care are weakened by data showing that Oregon residents have a high rate of hospice use—physician-assisted suicide and hospice are not mutually exclusive. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Support for Physician- Assisted Suicide Laws (cont’d)  Because of complexity of issue, some professional organizations (e.g., American Psychological Association) have remained neutral. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Bereavement Copyright © Springer Publishing Company, LLC. All Rights Reserved. Definitions  Bereavement: The situation of having recently lost a significant person through death.  Grief: The emotional reaction to bereavement, including behavioral, physical, cognitive, and social manifestations. Includes the process of dealing with loss. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Definitions (cont’d)  Mourning: “Social expressions or acts expressive of grief that are shaped by the practices of a given society or cultural group” (Stroebe et al., 2001, p. 6)  Any understanding of reaction to bereavement must incorporate a person’s culture. Stroebe, M., Schut, H., & Boerner, K. (2010). Continuing bonds in adaptation to bereavement: Toward theoretical integration. Clinical Psychology Review, 30, 259–268. doi:10.1016/j.cpr.2009.11.007 Copyright © Springer Publishing Company, LLC. All Rights Reserved. Psychological Reactions to Bereavement  Affective: Depression, despair, anxiety, guilt, anger and hostility, anhedonia, and loneliness.  Behavioral: Agitation, fatigue, crying, social withdrawal  Cognitive: Thoughts of the deceased, decreased self-esteem, self-reproach, helplessness, sense of unreality, decreased memory and concentration. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Psychological Reactions to Bereavement (cont’d)  Physical: Loss of appetite, disturbed sleep, loss of energy, physical complaints similar to those of the deceased, susceptibility to illness.  Spiritual: Change in religious activity, sense of anger or betrayal. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Uncomplicated Major Depressive Posttraumatic Stress Persistent Complex Bereavement Episode Disorder Bereavement Disorder Affect Sadness, emptiness and Depressed; Fear; anger; horror; shame; Sadness; intense sorrow loss; can experience inability to inability to experience and emotional pain; positive emotions experience positive emotions; guilt guilt focused on positive emotions; focused on the cause or interactions with the pervasive guilt consequences of the deceased or traumatic event circumstances of the death Intensit Decreases over days-to- Persistent; not Increases associated with Increases are more y weeks; occurs in waves necessarily tied to reminders of the traumatic pervasive and with increases often specific triggers event; usually specific to unexpected; severe associated with reminders the event; avoidance of symptoms > 12 of the deceased stimuli related to the event months; avoidance of situations and people related to reminders of the loss Thought Preoccupation with Self-critical; Persistent and Preoccupation with Content thoughts and memories of pessimistic exaggerated negative yearning and longing for the deceased rumination beliefs about oneself, the deceased and/or others, or the world circumstances of the death Self- Typically preserved Worthlessness; May worsen in response to Self-blame; confusion esteem self-loathing negative beliefs and about one’s role in life; expectations about oneself diminished sense of identity Thought If present, generally Focused on ending May be associated with Desire to die to be with s of focused on the deceased one’s life because reckless or self-destructive the deceased; sense death and joining the deceased of feeling behavior that life is meaningless worthless, or empty without the Copyright © Springer Publishing Company, LLC. All Rights Reserved. undeserving of deceased life, unable to  Grief and Major Depressive Disorder  Grief is characterized more by emptiness and loss, whereas MDD has more depressed mood or anhedonia.  Grief can include positive emotions and humor.  Dysphoria in grief decreases over time and often occurs in waves, triggered by thoughts or reminders of the deceased. Copyright © Springer Publishing Company, LLC. All Rights Reserved.  Grief and Major Depressive Disorder (cont’d)  Thought content in grief involves the deceased person.  Thoughts of death in grief involve the deceased person and joining the deceased, rather than wanting to end one’s life due to worthlessness or hopelessness. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Adjustment to Bereavement  Early psychoanalytic work emphasized the need to confront the reality of a loss and relinquish the bond to the deceased.  Grief work: Reviewing the past, including events at the time of death, focusing on memories, and working toward detachment from the deceased. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Figure 12.2 The dual process model of coping with bereavement. Source: Stroebe and Strut (2001). Stroebe, M. S. & Schut, H. (2001). Models of coping with bereavement: A review. In M. S. Stroebe, R. O. Hansson, W., Stroebe, & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 375–403). Washington, DC: American Psychological Association. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Continuing Bonds Perspective  Continued connection with the deceased is normal and can be maintained, through imaginary conversations, recalling happy memories, or a sense that the deceased person is guiding or comforting the grieving person.  One does not have to relinquish or continue one’s bonds with a deceased person; it is important to attend to individual differences in responses to bereavement. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Making Meaning  Meaning-making approach emphasizes the story of the death and story of the relationship with the deceased.  Grief is integrated into a changed self-narrative.  Widowed individuals who made sense of the loss in early bereavement showed higher resilience and well- being 4 years later (Coleman & Neimeyer, 2010). Coleman, R. A., & Neimeyer, R. A. (2010). Measuring meaning: Searching for and making sense of spousal loss in late-life. Death Studies, 34, 804–834. doi:10.1080/07481181003761625 Copyright © Springer Publishing Company, LLC. All Rights Reserved. Intervention for Bereavement  Most basic question is whether intervention should be offered at all.  General consensus is that professional intervention should be targeted at high-risk individuals, such as those with complicated bereavement.  Complicated grief therapy (CGT) involves processing of traumatic symptoms related to the death, promoting a sense of connection with the deceased loved one, and restoring life in the context of a changed reality.  CGT has shown improvement in symptoms in randomized controlled trials. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Psychotropic Medications  Very little empirical evidence supporting use of medications for grief.  Antidepressant medications may improve depressive symptoms but do not affect grief itself (Cacciatore & Thieleman, 2012). Cacciatore, J. & Thieleman, K. (2012). Pharmacological treatment following traumatic bereavement: A case series. Journal of Loss and Trauma, 17, 557–579. doi:10.1080/15325024.2012.688699 Copyright © Springer Publishing Company, LLC. All Rights Reserved. Late-Life Spousal Loss  Most people become widows/widowers in early 70s.  Most existing research is from older heterosexual women.  Pervasive loneliness is common, particularly at specific times of the day or year.  Most widow/widowers keep or increase their social contacts. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Late-Life Spousal Loss (cont’d)  Widows/widowers have a higher risk of mortality in first 6 months after bereavement.  High rates of accidental and violent causes of death.  Widowers have higher risk of mortality than widows. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Bereavement After Caregiving  Most caregivers benefit from anticipation before the loss, such as planning for the impending death and the caregiver’s life afterward.  Most caregivers experience rapid decreases in depression and grief within a year after the death.  However, up to 30% of caregivers experience complex bereavement and mental health problems after the death. Copyright © Springer Publishing Company, LLC. All Rights Reserved. Same-Sex Partner Loss  Included in the concept of disenfranchised grief, which occurs when a person’s grief is not openly acknowledged, socially validated, or publicly mourned.  Gay widowers have experienced less recognition of the depth of their relationships with deceased, and inequities in access to time off from work.  Lesbian widows experienced less support, including more legal challenges, less access to patient’s hospital room, and lack of recognition of the relationship. Copyright © Springer Publishing Company, LLC. All Rights Reserved.