Death & Dying The Dying Person's Emotions A major factor in our understanding of the gamut of emotional reactions among the dying was the pioneering work of Elizabeth Kubler-Ross (1926-2004), who found that: although many terminally ill patients were eager to discuss their feelings & learn the truth about their condition, doctors often instructed family members to avoid such a discussion, resulting in isolation & sorrow for both the patients & their families. Kubler-Ross's proposed that the dying go through five emotional stages. stage 1: Denial - most often skipped by older people stage 2: Anger stage 3: Bargaining stage 4: Depression stage 5: Acceptance - Not to be mistaken for a happy stage Other researchers have found that her stages, when they occur, do not always occur in the sequence she proposed. More typically, denial, anger & depression appear & reappear during the dying process, depending largely on the specific context of the death. Terror Management Theory Ψ In social psychology, terror management theory (TMT) proposes a basic psychological conflict that results from having a self preservation instinct, but realizing that death is inevitable and to some extent unpredictable. Ψ The idea that people adopt cultural values and moral principles in order to cope with their fear of death is part of TMT. Ψ The terror referred to in terror management theory (TMT) is that which is brought on by the awareness of the inevitable death of the self. According to TMT, the anxiety caused by mortality is a major motivator behind many human behaviors and cognitions, including self-esteem, ethno/religio-centrism, and even love. Ψ TMT psychologists view human culture as a belief system constructed to explain and give meaning to life and resist confronting the horror of death. One of the requirements of a successful culture is to substitute the reality of existential death with an achievable afterlife (i.e. belief in heaven or reincarnation). If not literally, then symbolically. Cemetery stones and burial monuments are examples of this. Cultures also reward enduring accomplishments to civilization with material awards, namesakes and inclusions in human history (Like naming a building or street after someone). Ψ Terror Management Theory (TMT) was proposed in 1986 by social psychologists Jeff Greenberg, Tom Pyszczynski, and Sheldon Solomon. The theory was inspired by the writings of cultural anthropologist, Ernest Becker, and was initiated by two relatively simple questions: Why do people have such a great need to feel good about themselves?; and Why do people have so much trouble getting along with those different from themselves? Ψ The basic gist of the theory is that humans are motivated to quell the potential for terror inherent in the human awareness of vulnerability and mortality by investing in cultural belief systems (or worldviews) that imbue life with meaning, and the individuals who subscribe to them with significance (or self-esteem). Emotional Reactions to Dying * The age of the dying person also affects the way he/she feels: * Young children are usually upset by the thought of dying because it suggests the idea of being separated from loved ones. * Adolescents, who tend to focus on the quality of present life, may be primarily concerned with the effect of their condition on their appearance & social relationships. * For the young adult, coping with dying often produces rage & depression, at the idea that, just as life is beginning, it must end. * Middle-aged adults may be primarily concerned about meeting important obligations & responsibilities. * An older adult's feelings about dying depend more on the situation. If one's spouse has already died & if the illness brings pain & infirmity, acceptance of death is comparatively easy. * The emotional response to death also depends on the age of the mourner. Little children are often angry that the dying person abandoned them. * Deaths that are expected are generally easier to cope with because they permit anticipatory grief. Deciding How to Die Preparations for dying are not only normal: they are psychologically healthy. Adults hope that they will die swiftly, with little pain and great dignity, however; this hope runs counter to modern medicine. The Patient & Family Medical hubris - may result in an attempt to do everything to maintain life. Avoid by using: Living will - A document that indicates what medical intervention an individual wants if she or he becomes incapable of expressing those wishes. A "good" idea with some problems. Proxy Designations - Problems follow; Without explicit instructions, many proxies do not know what to do. Family members may disagree with the proxy. Even with an advance directive and a proxy, more than half the time such directives are ignored by hospital staff. Medical Personnel - notes DNR - Do Not Resuscitate Double Effect - A situation in which medication has the intended effect of relieving a dying person's pain and the secondary effect of hastening death. Hospice Hospice - An institution in which terminally ill patients receive palliative care. Palliative Care (a.k.a. "comfort care") - Care designed not to treat an illness but to relieve the pain and suffering of the patient and his or her family. Ψ Barriers to Entering Hospice care: Hospice patients must be terminally ill, with death anticipated within six month. Such predictions are difficult for Doctors to make. Patients & caregivers must accept death. Hospice care is expensive, especially if curative therapy is continues. May not be available. FYI: Hospice is available in Abilene, Texas. Western states have more hospices than do southern states. Controversial Community Polices Physician-assisted suicide - when a doctor provides the means for someone to end his or her own life. Voluntary Euthanasia - Active euthanasia occurs when, at the patient's request, someone else acts to ends his or her life. Passive euthanasia occurs when a person is allowed to die (DNR). ) Despite concerns about a "slippery slope" leading to abuse; in places such as Oregon & the Netherlands where both forms of Euthanasia are legal, few people use them & safe-guards seem effective in preventing abuse. The Social Context of Dying Death Around The World In Africans traditions elders gain new status through death, joining the ancestors who watch over their descendents, and the entire village. Mourning one persons death allows all members of the community to celebrate the connection with one another and with their collective past. In Muslim nations, death affirms faith in Allah. Islam teaches that the achievements, problems, and pleasures of this life are transitory, and short-lived; everyone should be mindful of, and ready for, death at any time. Therefore, caring for the dying is a holy reminder of mortality and of the happy life in the afterworld. Among Buddhists, disease and death are among lifes inevitable sufferings, which brings enlightenment. The task of the dying individual is to gain insight from the experience, with a clear mind a calm acceptance. Family and friends help by preventing mind-altering medications or death-defying intervention. Among Hindus & Sikhs, helping the dying to relinquish their ties to this world and prepare for the next is a particularly important obligation for the immediate family. A holy death is one that is welcomed by the dying person, who should be placed on the ground at the very last moment, chanting prayers and surrounded by family members who are also reciting sacred texts. In the Jewish tradition, preparations for death are not emphasized because hope for life should be sustained. After death the body is buried the next day, un embalmed and in a plain wooden coffin, to emphasize that physical preservation is not possible. The family is expected to mourn at home for a week, & then to reduce their social activities for a year out of respect & memory. Many Christians believe that death is not an end, but the beginning of eternity in heaven or hell and thus welcome or fear it. Particular customs such as preserving the body for bodily resurrection, or celebrating the passing with food and drink vary from place to place. The Social Context of Dying Bereavement: the experience of losing a loved one. Grief: one's emotional reaction to the death of a loved one. The traditional Irish Wake was commonplace in Ireland up until about the 1970's & illustrates one culture's response to the need for the expression of grief. Perhaps a return to this kind of pattern is in order. The traditional Irish wake was the process of laying out the body of a departed relative in the house where they lived & /or died. All of the family & quite a few of the deceased ones neighbors & friends would gather at the house. The body was usually in a coffin in the parlor of the house or living room. There would be lots of food & plenty of drink to be consumed. People would come & socialize & remember the departed person's life. This wasn't a time for tears to say the least, it was more of a party than a funeral. It was the traditional Irish way of celebrating one's life & ensuring that they had a good send off. Mourning has become more private, less emotional, & less religious than formerly. This is not "good" for resolving grief! Younger generations of all spiritual backgrounds are likely to prefer small memorial services after cremation, while older generations prefer burial after a traditional funeral. There is an increasing tendency towards social isolation for those who have just lost their loved ones. This is exactly the opposite of a healthy reaction. A proper mourning should bring sympathy & attention. Grief that lingers can even cause death, primarily from heart disease, cirrhosis, & especially for men, suicide. Unexpressed grief also harms the larger community, particularly children: the funeral provides the setting in which private sorrow and public loss can be both expressed and shared as a social ceremony, it serves to bring together the community. It also serves as an important vehicle of cultural transmission. Ψ Normal grief is a term used to describe the typical symptoms somebody experiences after a loss. It can include: anger. feelings of guilt. sadness & tearfulness. preoccupation with the deceased. seeing or hearing the voice of the deceased. disturbed sleep & appetite &, occasionally, weight loss. disbelief, shock, numbness & feelings of unreality. Denial, combined with deep waves of sadness (Joan Didion, The Year of Magical Thinking). Ψ Complicated types of Grief: Absent Grief: A situation in which overly private people cut themselves off from the community & customs of expected grief; can lead to social isolation. (not good) Incomplete Grief: A situation in which circumstance interfere with the process of grieving. (not good) Disenfranchised Grief: A situation in which certain people, although they are bereaved are not allowed to mourn publicly. (not good) Anticipatory grief: occurs when you know in advance that your loved one is going to die. You start getting ready psychologically, & you begin the grieving process. (may lessen the hurt) Grief - common themes & emotional reactions, Three phases: 1. impact - shock, denial, & numbness usually persist from six to eight weeks. 2. confrontation - react to the loss (i.e., experience the pain). 3. accommodation / acceptance (Bowlby, 1980; Parkes, 1986,1991; Rambo,1995) Twelve Ways to Help the Bereaved: By being there By tolerating silences By listening in an accepting and non-judgmental way Avoid the use of clichιs such as "Think of all the good times", "You can always have another child" etc By encouraging them to talk about the deceased Be practical in your offer of support by minding children or cooking By mentioning the dead persons name Accept that tears are normal and healthy Don't try to fill in conversations with a lot of outside news. Remember that grief may take many years to work through Acknowledge birthdays, death dates, anniversaries etc By accepting that you cannot make them feel better The Centre for Grief Education, McCulloch House, Monash Medical Centre, 246 Clayton Road, CLAYTON VIC 3168 Australia Ψ Reactions to a Spouse's death: Normal Grief - Increased depression for 6 months, recovery at 18 months. ≈ 11% Slow to recover - Still not back to normal at 4 years. ≈ 11% Resilient - happy & productive at 6 months after the death. ≈ 50% Less depressed after death tan before ≈ 18% Depressed before & after, therefore chronically depressed, not stuck in grief. ≈ 10% Ψ Recovery: The first step is to be aware that powerful, complicated, & culturally diverse emotions are likely: a friend should listen, sympathize & not ignore the mourners pain. The second step is to understand that bereavement is often a lengthy process, demanding sympathy, honesty, & social support for months or even years. It is important to recognize that each culture, cohort, & generation imparts to its people distinct customs and values. No matter what method is used to work through emotions of grief the experience may give the living a deeper appreciation of themselves as well as of the value of human relationships. Death, when accepted, grief, when allowed expression, & bereavement, when it leads to fuller appreciation of living, gives added meaning to birth, growth, development, & all human relationships. Key Questions 1. Discuss the steps that the patient, family, & health care professionals can take to plan for a swift, pain free, & dignified death. 2. Describe recent changes in the mourning process & suggest how to help someone recover from bereavement. 3. Identify Kubler-Ross's stages of dying, & update them in the light of current research. 4. Discuss the value of having a "living will". 5. What is the difference between passive & active euthanasia? 6. Are current mourning patterns in our society helpful in resolving grief? 7. How is contemporary death different from death a century ago? 8. In general how do dying people feel about family members? ------------------------------------------------------- Epilogue: Death & Dying Robert C. Gates