Dying, Death & Bereavement

SIDS

#1 cause of death in infants aged 1-12 months.

CHILDREN - AGES 10-12

1. Death is inevitable and universal. 2. It is a lawful process that happens to all things. 3. They're concerned with justice; death is "fair". 4. Death anxiety begins here. 5. Death is associated with pain as well as disease and accidents. 6. Their symbolism includes the colors purple and black.

CHILDREN - BIRTH TO AGE 1

1. Death viewed as a separation and abandonment. 2. Infants under 4 months perceive death physically through needs being met or not. 3. Infants 4-12 months experience dying as a separation and a recognizable, hurtful sensation.

ERIK ERIKSON'S THEORY OF HUMAN DEVELOPMENT

1. Infancy 2. Early Childhood 3. Play Age 4. School Age 5. Adolescence 6. Young Adulthood 7. Adulthood 8. Senescence the feeling of integrity that life has had value.

ISLAMIC RITUALS

1. Just prior to death, the dying recites the Islamic confession of faith: There is no God but Allah, and Mohammed is his prophet. Also, the dying person requests forgiveness for anything because God will not forgive the violation of human rights unless they have been forgiven. 2. Disposition of the body: embalming is forbidden. 3. Timing: As soon as possible, preferably before sundown. May be extended up to two days for travel arrangements. 4. Preparation of the body: in the home or hospital, person of same gender follows prescribed ritual. Eyes and mouth closed, arms straightened alongside the body, the body washed and wrapped in a white seamless cloth (shroud) similar to that worn for the pilgrimage to Mecca. Placed in simple wooden coffin. (sometimes coffin eliminated.) During preparation, prayers and passages from Koran will be recited by a hoca (lay holy man). The body always faces Mecca. 5. Burial is quick and simple. 6. Service: body transported from home or hospital to mosque on shoulders of pallbearers. At mosque, the body is placed on a stone bier in the outer courtyard. Funeral service is one of five regular daily religious services (usually noon). Body transported to cemetery on shoulders. Because Muslims consider burying the dead a good deed, when worshippers leave, they join the procession. Women do not attend the funeral of men but can if another woman dies. 7. Burial: body placed into grave, mourners place handfuls of dirt. Sexton fills remainder of grave with shovel. Prayers are recited and a sermon is given. 8. Flowers: mourner's plant flowers rather than cut flowers, because they believe that every living plant utters the name of God. 9. Mourners: women openly express emotion in the bereavement, but men retain composure as a sign that they accept the will of Allah. After ceremony, mourners share a meal at home of deceased. Sometimes this food is placed on the grave for three days. Mourning continues for three days. Widow must go into seclusion for 4 months and 10 days before she is permitted to be remarried. 10. Organ donation is o.k.

CANCER - PAIN MANAGEMENT

1. PRN- Latin for pro re nata, which means that medication is given ―as the situation demands. 2. Palliative- this approach is based on the belief that a patient should not be in pain at all. In other words, treat the pain before it begins. 3. Art and Music therapies- although these are non-traditional it allows the patient to focus their attention away from the physical feeling of pain.

CHILDREN - AGE 1-3 (TODDLER)

1. Recognizes the difference between alive and inert, or not alive (pet Vs table). 2. Vocabulary includes "to die", "to live" by 3. 3. "Object constancy" occurs around 12-18 months and thus the recognition that some things are not permanent; thus, they can grieve. 5. Death viewed as separation.

SYMBOLIC IMMORTALITY

Can be achieved by 1. off-spring 2. high-status death (i.e. those who died in the Attack on America) 3. organ donation 4. authoring books 5. inventors, political leaders and athletes (people that you just know who they are-mostly through the media) 6. murderers, traitors (i.e. John Wilkes Booth, Lee Harvey Oswald, Osama Bin Laden)

PALLIATIVE CARE

Care designed to give the patient as pain-free a condition as possible. In addition to physical needs, the patient's social, psychological, cultural, and spiritual needs are considered. The hospice movement shares all the goals of palliative care.

KAVANAUGH

Children are little people. They are compact cars traveling the same roads of life and going the same places as big cars. Although they are more vulnerable and fragile, they have all of the parts and purposes of big people. They are ready and capable of talking about anything within the framework of their own experience. Little people can handle any situation that adults can handle comfortably and should do anything that big people can do as long as they are physically able.

CHILDREN W/ DYING PARENT

Encourage the child to draw. Visiting with the dying parent can be helpful. Above all, tell the child that the death is going to occur.

DEATH FEARS

Four principle concerns about death: 1. Death of self 2. Death of significant others 3. Process of dying (the most significant fear) 4. State of being dead

CHINESE HEALTH CARE SYSTEM

Physician & family responsibility Way of life emphasizes: Generational continuity Family solidarity Respect for elders Situation-centeredness Practice combination of Western and Traditional Chinese Medicine Inconsistent quality by socialist system Patients die at home

MEDICAL MODEL APPROACH TO DYING

The Medical model in the United States is basically the idea that, when sick, we go to a Dr. to be made well again. Therefore the dying patient does not fit the medical model of being able to be "fixed." The model ignores the fact that illness may be a part of dying and in treating the illness, we are trying to cure the individual.

DYSFUNCTIONAL (religion is dysfuntional)

any consequence of a social system that is judged to be a disturbance to the adjustment, stability or integration of the group of members of the group.

ANTICIPATORY DEATH

bereavement for the self. Reinforced by: a. The role disengagement process b. The spatial isolation of the dying patient c. The terminal label by the medical society.

ACUTE DISEASE

communicable disease caused by microorganisms. Lasts short time, ending in recovery or death.

RELIGION

is a system of beliefs and practices related to the sacred, the supernatural, and/or a set of values to which the individual is very committed; beliefs which unite into one single moral community called a Church, all those who adhere to them. a. system of beliefs b. set of religious practices or rituals c. sacred or supernatural as object of worship (except Hinduism) d. a community base

UTILITARIANISM

is the belief that social policy should be directed toward providing the greatest good (maximum benefits) for the greatest number of people.

CHRONIC DISEASES

non-communicable disease from which one rarely recovers and causes deterioration of major organ systems. ie. heart disease & cancer. 65% of American deaths caused by chronic processes. #1 risk - smoking.

INFANT MORTALITY RATE

number of deaths of children under age 1 per 1,000 live births.

MORTALITY RATE

number of deaths per 1,000 population

MORBIDITY

rate of occurrence of disease

DHARMA

religious duties and requirements, which fulfillment determines one's karma

LIFE EXPECTANCY

the number of years a newborn in a population can expect to live.

ENVIRONMENT/DYING PERSON HOSPITAL

• 75% of adults are hospitalized at some point during the year before they die. • The bureaucracy of hospitals includes: • Specialization- the only place the treatment can be had • Rationalization- "We know best" mentality • Development of power though expert and specialized knowledge-Patient doesn't always know what is going on. Many Doctors see as their job to know everything and your job to just accept it and not to question what is going on, or heaven forbid, try to understand what the doctor is doing. • Depersonalization- usually from the Physician. In his or her defense- I think it would be too emotionally burdensome to carry the load of every patient. There has to be some level of distance so they can do their job. • Gives patient little control over the circumstances of their daily lives.

ENVIRONMENT/DYING PERSON HOME

• Although home is the preferred place to die the majority of Americans die in an institutional setting. • People used to die mostly as home because: There were few hospitals. Without the use of life-support equipment there was nothing that could be done at the hospital. Nursing homes were not available. Nothing was "wrong". People dying of old age died at home with their families taking care of them.

AIDS - ACQUIRED IMMUNODEFICIENCY SYNDROME

• HIV is the Human Immune Virus, and AIDS is the disease caused by HIV. • Not all people who test positive for HIV have AIDS • AIDS was first diagnosed in 1981. • Nearly 90% of persons with AIDS are between the ages of 20 and 49. • In the US, AIDS is spreading in the inner cities the fastest. • In poor countries, AIDS is often a disease of the relatively rich. • The age group with the greatest percentage of AIDS cases is 30 to 39 years old at 45%. • In every category of AIDS, males outnumber females. • AIDS is affecting blacks proportionately more than whites. • AIDS has now surpassed malaria as the world's number one killer. • AIDS is a communicable disease involving extremely labor-intensive care for patients, who are often without family support systems.

ENVIRONMENT/DYING PERSON HOSPICE INPATIENT CARE

• Inpatient hospice care usually becomes necessary for 1 of 3 reasons: 1. To bring a patient's pain and symptoms under control. 2. The family may not be able to provide the exhaustive care necessary, or may just need a break for a few days. 3. Home care may be inappropriate for the patient's situation or the home situation. • Inpatient hospice care; allows for large numbers of family members to congregate, usually in large "family rooms", encourages patients to bring favorite possessions, and allows visiting at any time of day or night.

CULTURAL CRITERIA

In some countries, infants dying within 24 hours are never counted or classified as stillbirths. In others, infants must be registered, which can sometimes take months. If they die before the registration period is completed then some infants may not be counted as dead because they were never alive; thus precluding the death of the infant. You can't die if you weren't born. In New Guinea death is defined as "when breathing and heart cease and the mouth and eyes hang open."

AMERICAN DEFINITION OF DEATH

Physical criteria: Until the 1960's and 1970's, death was defined as absence of breathing and heartbeat (the UN criteria). The problem is: Often the heart can be stopped for surgery, and then restarted. At that point, is the patient dead or alive? Mental criteria: The Harvard Definition of death: a PERMANENTLY nonfunctioning brain. The heart and breathing would cease without artificial means. Thus, without the brain, any artificial circulation is merely pumping blood through a dead body. Dual Criteria: In 1981, President Reagan's Presidential Commission examined physical and mental ways to determine death and gave 2 definitions. The proposal was accepted by both the American Medical Association and the American Bar Association (thus providing medical and legal acceptance) and the majority of the states have the same or similar definitions. i. Irreversible circulatory and respiratory cessation OR ii. Irreversible cessation of all functions of the entire brain, including the brain stem.

TEMPORAL INTERPRETATIONS

They tend to reject or de-emphasize a belief in the afterlife. They tend to believe that death is the end of the individual. They tend to focus upon the needs and concerns of the survivors. They tend to be present-oriented for themselves, but present and future oriented for those who will continue after them. Any belief in immortality is related to the activities and accomplishments of the individual during his or her lifetime, including biological offspring and social relationships that the individual has created.

TIMOTHY LEARY

"I am looking forward to the most fascinating experience in my life, which is dying." Death, he said, must be approached the way that life is lived, with curiosity, hope, fascination, courage, and the help of your friends.

B.F. SKINNER

"I will be dead in a few months, but it hasn't given me the slightest anxiety or worry or anything. I always knew I was going to die."

DWIGHT L. MOODY

"In a few weeks you shall read that Dwight Moody is dead. Don't you believe it! At that time, I shall be more alive than ever before!"

SPACE MEANINGS

(Cues) Factors related to social space will give patient indications that the condition is terminal. "The dying usually comes to know when the end is near by observing themselves and the people around them." 1. Going to the hospital. 2. Location in the hospital. ICU, oncology, single room 3. Societal disengagement: the process by which society withdraws from, or no longer seeks, the individual's efforts. Society withdraws from the patient, which causes patient (social) disengagement. 4. Diminishment of social and personal power. a. stripping: patient relinquishes all personal identity; clothes, valuables, and is issued a gown, looking like all the others. b. control of resources: denied access to medical records and thus to information needed to make decisions. c. restriction on mobility: puts patient in position of dependency; reduces autonomy. Also increases societal disengagement from family and staff. 5. Social disengagement: the patient withdraws from society. a. stage of acceptance of death and dying b. self-fulfilling prophecies c. debilitation causes lack of energy d. physical unattractiveness ( Kubler-Ross example of woman who applied more and more make-up) e. coping strategy: to avoid seeing all they are going to leave. f. anticipatory death: self-bereavement: an acceptance of their social death

ADOLESCENCE - AGES 12-15

1. Acquires formal logical thought (Just try to argue with one of these young lawyers!) 2. Moves from concrete to abstract concepts (Thus they begin to move into algebra and geometry, for instance.) 3. Onset of biological sexuality (Walk around a junior high student and you'll be amazed.) 4. Physical growth (Some boys are afraid they will grow into those big feet!) 5. Psychosocial tasks (The angst of boy/girl relations begins in earnest here.)

ISLAMIC RITUALS (MUSLIM)

1. After death, all face a divine judgment where they are assigned eternal dwelling places with either rewards or punishments determined by the strengths of their faith in God and the moral quality of their earthly lives. There are seven layers of "alnar" (Fire of Hell) and seven layers of heaven. Disposition is based on belief in God and in the message of his prophet Mohammed. Other determinants include lying, corruption, blasphemy, denial of the judgment day and reality of the Fire, lack of charity, and leading a life of luxury.

EXPLAINING DEATH TO A CHILD

1. Attempts to protect children from the reality of death reinforces the perception that death is not real or is too frightening, or that the end of life is not worth noting with reverence and respect. 2. Children are "excellent observers" and "poor interpreters". Their imaginary explanations will give them more fear than the truth. 3. Seek out opportunities to deal with death with children; pets, bugs, etc. 4. Children experience the same emotions as adults. (KAVANAUGH) 5. Adults need to model appropriate ways to grieve. 6. When talking, tell the truth. Be honest and open. 7. Avoid NEVER USE euphemisms. Children interpret them literally. 8. Use words to indicate that the body is biologically dead. Worn out, stopped working, dead. 9. Don't overemphasize happiness for the dead and deprive the child of the chance to grieve. 10. Be aware that children mourn fully but differently than adults. They may cry, then go play. 11. Explain what happens next: body to funeral home, funeral, cemetery, etc. Whatever is true.

BUDDHIST RITUALS

1. Beliefs and rituals were adapted to individual cultures; thus, each country practices differently. 2. Preparation of the body: different for each culture. 3. Disposition of the body: cremation is preferred, but earth burial is also ok. There is no "soul" in the enlightened individual, and cremation promotes the process of liberation of the individual from the illusion of the present world. 4. Funeral ceremonies: family members make offerings through the priest to the spirit of the deceased. 5. Mourning: ritual feasts for the priests and other mourners, to promote community cohesiveness and re-incorporation of chief mourners into the routine patterns of social life. 6. Organ donation is o.k.

DYING CHILD - FEELINGS

1. Children experience helplessness and feel vulnerable. a. Medical treatments forced upon them despite their protests. b. Parents often not with them despite desire. c. Want to be home and can't. d. Betrayal by body; they feel sick. d. May be in isolation; can't even see parents' faces 2. Anger is common. a. Often directed at parents who won't protect them or take them home b. May reject parents specifically c. Lash out at caretakers 3. Regressive behavior is common. a. psychologically, a child will return to an earlier stage of development where they felt safe. b. need to be reassured and loved at that level c. as they regain control at the regressed level, they will move back up d. regression may be seen as acute separation anxiety 4. Resistance to treatments a. Circumvented by general anesthesia and relaxation techniques b. Child has inability to refuse c. Reinforce child's helplessness 5. Children do not tend to have the same death fears as adults a. A happy afterlife expectation seems to be universal. b. They don't fear the process as much as the separation. c. Family needs to grieve together that they will miss the child. d. They want to know what it will feel like, who will be there. e. Children often reassure parents and friends. 6. Children's honesty (when allowed to talk) often shocks adults

ADOLESCENCE - AGES 16-19

1. Completion of physical maturation 2. Increasing intimacy with opposite sex. 3. Continued acquisition of adult social skills. 4. Clarification of ethics and values. 5. Ability to make long-term commitments to persons and goals. 6. *Senior high students have more death fear than junior high students or adults. a) Due to the identity crisis of adolescence b) Because the mind is occupied with overcoming disintegration, separation and instability. c) Because many teens must adjust to death of a peer (suicide, accident). d) Death of peer emphasizes adolescent's own vulnerability and mortality. e) Teen mourners are often "forgotten" at funerals and are thus unable to integrate the experience. f) Parents, police, administrators tell them, "Don't die on prom night."

JUDAISM BELIEFS

1. Death caused by Adam and Eve's original sin in the Garden of Eden. After eating the forbidden fruit, they received the knowledge of good and evil, curse of pain in childbirth, burden of work, and loss of physical immortality. Death is a punishment for disobedience. 2. Abraham and his descendants would have a special relationship with God, and thus immortality came with association with the group. a. Some think there is no afterlife, only an "afterdeath"; the dead go to Sheol, where nothing happens, and the soul eventually slides into oblivion. b. Others believe in the resurrection of the soul at the final judgment. c. Others find in the Old Testament no reference to man's immortality after death. But "reason" compels that the soul continues. 3. Jewish rituals emphasize that God does not save individuals from death, but saves Israel for history, regardless of death.

DYING CHILD - SIBLINGS

1. Emotional response a. As in the birth of a newborn, all attention goes toward one child and sibling feels jealous. b. Most of the parents' attention does go toward the ill child, leaving the well sibling neglected, confused, rejected. c. They're distressed by the visibility of the illness and their tendency to identify with the ill child. d. They feel vulnerable to the same disease and fear minor symptoms. e. They feel guilty for being healthy. f. They fear death occurring at same age. g. Because they're aware of family needs, they often choose to not express their feelings because the parents are too upset or they don't want to upset them even more. 2. Parents' relationship with siblings of dying child a. Siblings needs are neglected and can "expand" either during the acute phase of illness or during remission, when things settle down and the children feel safer in expressing their needs — just when parents need to rest as well. b. Sibling's anger is more prominent during remission when neglect continues as parents "catch up" on normal activities. c. Siblings feel they are the "less-favored child" because all attention goes elsewhere. 3. Behavior problems: Studies have shown that 30-50% of siblings will have disturbed behavior after the death. Boys and girls equally affected. Age 6-11 years develop more problems than other ages. 4. Examples of behavior problems: Siblings may exhibit behavior problems such as crying, school problems, somatic complaints, nightmares, death fears, depression, excessive talking, and anti-social behavior. 5. Negative aspects for siblings Emotional realignment within the family a. emotional deprivation b. decreased parental tolerance c. increased parental expectations Separation from family members a. lack of information b. decreased family involvement c. insufficient social support Disruption caused by the ill child's therapeutic regimen a. watching the ill child's physical and personality changes b. seeing the anxiety and pain c. adjusting to changes in family routine 6. Positive aspects for siblings a. increased sensitivity and empathy for the ill child b. personal maturation c. increase in family cohesion

DENYING DEATH

1. Euphemism 2. Death conversation is taboo. 3. Cryonics - method of freezing a corpse through dry ice and liquid nitrogen. Cryonics is an expression of the fear of dying by denying death. 4. Death described as a nap: Caskets have "beds" and pillows. 5. Fear of the body 6. Avoidance of the final good-bye

HOSPICE - HISTORY

1. Hospice, hospital, hostel and hotel are all from the same Latin spitium; meaning host, or guest. 2. First hospitals were from religion rather than humanitarianism. 3. Medieval definition of hospice meant a way station for travelers; the Hospice of Great Saint Bernard in the Alps is the most famous of this time. 4. With time, hospice included care for the sick as well as traveler. 5. Secular administrators and practitioners dominate and prioritize toward caring for the acutely ill rather than the incurable. 6. In 1905, St. Joseph Hospice of London founded to care for the terminally ill. 7. In 1967, St. Christopher's Hospice in London expanded the concept of ministering to the spiritual and physical needs of dying patients. Dr. Cicely Saunders, RN, LSW, MD, and founder, became an international influence on the hospice movement. 8. In 1971, Connecticut Hospice founded by Yale RN and MD schools invited Dr. Saunders. 9. In 1974, due to funding, in home care program founded. 10. In 1980, inpatient facilities opened. Now there are about 4,700 programs in USA. 11. Majority of patients have Cancer. 12. Most spend 2 months or less. 13. Three models a. free-standing hospice, entirely independent. 50% b. hospital-based hospice. 25% c. nursing-home based. 25% 14. Key concept: patient and family is the unit of care. 15. No one is ever turned down for lack of money. Most are Medicare certified. Although there is a greater ratio of staff to patients, since the majority of hospice care is in the home, the cost overall is lower than most other forms of care. Inpatient care is higher than nursing home but lower than hospital care. Presently 80% of employees are covered through their company's insurance plans.

DYING PERSONS BILL OF RIGHTS

1. I have the right to be treated as a living human being until I die. 2. I have the right to maintain a sense of hopefulness, however changing its focus may be. 3. I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this might be. 4. I have the right to express my feelings and emotions about my approaching death in my own way. 5. I have the right to participate in decisions concerning my care. 6. I have the right to expect continuing medical and nursing attention even though ―cure‖ goals must be changed to ―comfort‖ goals. 7. I have the right not to die alone. 8. I have the right to be free from pain. 9. I have the right to have my questions answered honestly. 10. I have the right not to be deceived. 11. I have the right to have help from and for my family in accepting my death. 12. I have the right to die in peace and dignity. 13. I have the right to retain my individuality and not be judged for my decisions, which may be contrary to the beliefs of others. 14. I have the right to expect that the sanctity of the human body will be respected after my death. 15. I have the right to be cared for by caring, sensitive and knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.

OLDER ADULT YOUNG OLD (55-75) OLD OLD (75+)

1. Life is considered now a train approaching the end of the tunnel rather than a train entering the tunnel. 2. Awareness of scarcity of time; they are the next generation to die; peers die regularly. 3. They have lived the "Round of Life" at its simplest: birth, copulation, death. 4. Erikson's Final stage of life: Senescence. Task of Senescence is to achieve integrity: a conviction that one's life has meaning and purpose and that having lived has made a difference. 5. Wass and Butler consider the last stage a "Life Review": a reverence for what was a time of judgment: looking back over one's life and perhaps tracing back one's steps in earlier years: a review of one's life as death draws near. 6. Death Taboo: this is the one topic not discussed at Elderhostels (educational "camps" for people over 55); society tends not to discuss death with the elderly nearing it. Yet the elderly are more open to discussion! 7. Death Fears: While the elderly think of death more often, they appear to have less fear and anxiety. a) Fear long, painful, expensive death b) Fear burdening family and losing the intended inheritance c) See lives with less prospects for the future and less valuable d) Have a sense of "living on borrowed time". e) Deaths of friends socialize older adults to accept own death. f) More likely to have fulfilled goals or modified them acceptably. g) Better socialized to death through childhood experiences (raised on farm). This will change as each succeeding generation moves farther away from childhood on the farm. h) Age and education are more influential factors in death fears: better- educated, higher income elders have less fears. Mental and physical health deterioration increased death fears. i) Most elderly prepare for death with preplanning. Their concept of a "good death" emphasizes looking after the needs of the survivors in a practical way. j) Elderly more likely to be separated from family and friends when they die; in hospitals and nursing homes.

BUDDHISM BELIEFS

1. Many types of Buddhism, depending primarily on location. But most find common heritage in the life of Siddhartha Gautama (The "Enlightened One" or "Buddha"). He was born in 563 as a prince in northern India. As a child his thoughts were preoccupied with finitude of human existence. Family tried to shelter him from suffering and death. At age 29, he left the privileged life and searched for personal salvation. He achieved a "state of enlightenment" through the process of intense meditation. Preached for the remaining 50 years of his life a message of salvation to all people regardless of social position and gender. 2. Message of salvation is Four Noble Truths. a. All human existence is characterized by pain and suffering in an endless cycle of death and rebirth. b. The cause of the agony of the human condition is desire for personal satisfaction. Impossible to obtain. c. Salvation comes by destroying these desires. By destroying ignorance, one experiences enlightenment and the cycle of transmigration of the soul is broken d. One can experience perfect peace through an eightfold path to enlightenment. Nirvana is the final release from the incarnation cycle. 3. Buddhist goal is not to experience life after death but to experience nirvana, which has neither the property of existence nor nonexistence.

SIGNS OF IMPENDING DEATH/ HOW TO ADD COMFORT

1. More sleeping, less easy to arouse. Plan communication and activities around when patient is awake. 2. Confusion about time, place, person. May see or respond to one who is not there, or may have even died. Orient himself or herself to time, place, or person. Believe what they see or hear. 3. Loss of bowel and bladder control due to nervous system changes. Hygiene. Consider catheter. 4. Extremities cool and blood pools in the dependent areas of the body due to the body shutting down (shock). Warm blankets (not electric). With skin integrity changing, danger of burns with electric blankets or heating pads. 5. Decrease in oral intake. Dry mouth — ice chips, cool cloth, oral hygiene, moisten lips. 6. Signs of dehydration. ―Death rattle due to thick secretions that the patient is unable to cough up; decrease in urine output. Elevate HOB, ice chips. 7. Restlessness. Stay calm, speak slowly. Gentle reminders to time, place person. Do not agree to inaccuracies. 8. Decreased urine output. Due to dehydration and shut down. Irrigate foley. 9. Irregular breathing patterns. ―Cheyne-Stokes Respirations; periods of increasing depth and rate of respiration followed by apnea. Crescendo/decrescendo respirations with periods of apnea due to increasing sensitivity to CO2 in brain. When CO2 builds up, resps increase to blow it off until it is below threshold, then apnea until threshold is reached again. Death is imminent.

CHILDREN - AGES 5-9

1. Move into the age of concrete thinking; examine dead things, questions about death. 2. Begin to understand irreversibility. 3. Give characteristics to death: traits such as scary, dangerous, mean. Death is personified as a person, skeleton, or angel. 4. Death is associated with the old and ill. 5. Death is a "taker". It comes in the night and snatches one away. Something violent that takes you against your will. 6. Death is identified with the dead object, not as a process. 7. Correctly relate to biologic aspects of heart and lung activity. 8. Death is contagious.

HINDUISM BELIEFS

1. No single founder or sacred text. Hinduism is a system of social customs imbued with religious significance. The "Veda" is an authoritative source of spiritual knowledge but Hinduism allows many gods; even the non-belief in any god. The central doctrine is reincarnation and transmigration of souls. One's present behavior determines the next life. The ultimate goal of the soul is liberation from the wheel of rebirth, through reabsorption into or identity with the Oversoul (Brahma)--the essence of the universe, immaterial, uncreated, limitless and timeless. 2. Three key concepts a. karma: moral law of causation; suggests that human actions produce results for which the individual is responsible. Also refers to the balance of good and bad deeds in previous existence. b. dharma: religious duties and requirements, which fulfillment determines one's karma c. moksha: the reward for living a saintly life; achieved by acquiring true knowledge, performing good deeds, and living a life of love and devotion toward God. 3. Death brings two possibilities: liberation or transmigration of the soul. Birth and death are exits and entries into different worlds. 4. Death is analogous to discarding used clothes; the individual continues to "be" after the disintegration of the body. The body is discarded when it no longer serves the purpose intended for this world. Death is necessary for rebirth. 5. Life in a continuous chain of existence, moving toward God. "Moksha" is the destination.

NORM & ROLE MEANINGS

1. Norm: a plan of action or expected behavior pattern thought to be appropriate for a particular situation. Others' expectations are paramount here. Example, the "proper" way to respond to impending death may be to be brave and gracious. 2. Role: plans of action or expected behavior specifying what is to be done by persons occupying particular social positions. 3. Role disengagement: the patient withdraws from his role in society. Takes world trips, etc. 4. Sick role: society's expectation of how the patient will handle death.

HOSPICE - INTERDISCIPLINARY TEAM

1. Patient and family. Hospice emphasizes that patient and family make their own decisions, with support of the team. 2. Patient's personal physician. Turns care of the patient to hospice MD while inpatient, but must be willing to resume care if the patient is able to return home. 3. Hospice medical staff. a. MD. directs patient care. b. RN. coordinates care. c. ancillary medical team. d. nurses aides 4. Hospice social worker. Works with the family to facilitate communication, deals with social problems (alcoholism, etc.) and helps the family to understand the process, since many are shielded from death. 5. Pastoral care. Directs pastoral care for the patient, coordinates with patient's own spiritual counselor. 6. Financial counselor. Help with insurance and other expenses. 7. Health care professionals as needed. Psychiatrist, psychologist, visiting nurses and aides, PT, OT, lawyers, funeral directors. 8. Artists. For self-expression. 9. Volunteers a. companion/friend; a safe presence, a competent presence, a listening ear b. advocate c. educator d. patient/family care tasks 10. Bereavement team. Interdisciplinary volunteers, usually, who follow up.

HOSPICE - PATIENT/FAMILY UNIT CARE

1. Patient-centered care. Patients and their families have the right to participate in decisions concerning their care, and that they should not be judged because their decisions are contrary to the beliefs of the caregivers. 2. Patient-family centered care. Traditional, acute medical care centers on the patient while hospice focuses on the family unit. a. multidisciplinary team allows focus on the family b. in-patient and outpatient options c. 24-hour call available for home hospice d. the family is involved in the decision-making process. 3. Commitment to pain and symptom management. In the acute setting, patients often ―earn their morphine‖, while in hospice, the emphasis is on prevention and quality of life. When the patient's symptoms and pain are under control, they can focus on saying goodbye-- their way. Morphine is the drug of choice for severe pain, given orally (without a top dosage) or parenterally (IV) by patient-controlled analgesia. This ―erases the memory of the pain and prevents fear and sedation. Patients are encouraged to not allow the pain to get out of control, which takes much longer to control and causes a host of other physical symptoms. Carefully titrated dosages allow the patient to remain conscious and do not interfere with the respiratory status.

HINDUISM RITUALS

1. Preparation of the body: Same sex prepares the body in the home of the deceased, overseen by the person's successor and heir. Body is anointed with oil, flower garlands placed around it. Eyelids closed, hands across the chest. 2. Disposition of the body: cremation is an act of sacrifice, where one's body is offered to God. Bier constructed by family members, a mat of coconut fronts between two poles and supported by pieces of bamboo. Body is uncasketed and carried from home to cremation place by close relatives. Funeral procession led by chief mourner, usually eldest son, with musicians and other mourners. Widow always remains behind in the home. 3. Ceremony: When the body reaches the place of cremation, ideally by a sacred river, body is removed and immersed in the holy waters, then placed on a "ghat" (platform). Priest performs brief disposal ceremony. Body will be smeared with "ghi", clarified butter, and placed on the byre. The chief mourner, who brought coals from the house of the deceased, lights the pyre and the priest recites an invocation. 4. After cremation: mourners ritually wash selves in the river in rite of purification and make offerings to ancestral spirits of the deceased and recite sacred passages. 5. Widow: stays behind in the home. 6. Three days after cremation: relatives return to gather the bones. Priest reads texts and sprinkles water on the ghat, while remains are placed in vase and given to chief mourner, who has the obligation to cast these remains in the Ganges or other sacred river. 7. Mourning: 10-31 days after cremation, a "Shraddha" (elaborate ritual feast) is prepared for all mourners and priests. Gifts are given to religious leaders. Social status determines length; 8 hours to several days. At the end, the mourning period officially ends, but later Shraddhas may be offered in memoriam. Shraddha provides nourishment to the spirit of the deceased in its celestial abode, and serve as rites of family re-incorporation and differentiate the family's social status. Not providing the Shraddah causes more social problems than possibly impoverishment. 8. Organ donation is o.k.

JUDAISM RITUALS

1. Preparation of the body: body is cleansed by a Jewish burial society in a washing process called purification. 2. Disposition of the body: unless local laws require them, embalming, cremation and autopsy are forbidden. (Reform Judaism allows for cremation and entombment, but burial is preferred.) Chevera Kevod Hamet: a society of volunteers to take care of Jewish dead; ceremonial washing by same sex; no formaldehyde (for faster return to dust); no nails in plain wooden coffin, body placed in a shroud. Guard the body in two-hour shifts, pallbearers lower coffin into grave, burial volunteers, rabbi and family shovel in earth. Cost: $500 vs. $1000 for a no- frills funeral home. 3. Dress: plain linen shrouds; men with prayer shawls. 4. Casket: plain, wooden, no nails. 5. Timing: before sunset on day of death. 6. Do not display wealth in the process. 7. Mourning: a. tearing the garments. (may substitute torn black ribbon.) b. from death to burial: exempt from religious rituals; forbidden from drinking wine, eating meat, attending parties, sexual intercourse. c. "Shiv'ah" is seven days after death when mourners act as if they themselves were dead. Forbidden to work, have sex, read Bible, bathe, shave, or have hair cut. Grief should appear with less intensity than during funeral and burial rites. d. after 7 days, avoid social gatherings until 30 days after the death; with death of parent, restrictions in place for one year. e. "Yahrzeit", annual commemoration of the death, is observed by lighting a memorial light, performing memorial acts of charity, and attending religious services to recite prayers. (Kaddish) 8. Interment: body lowered into earth, a doxology "Kaddish" is recited affirming mourner's faith in God. After burial, people form two lines between which primary mourners pass. 9. Organ Donation is o.k.

MALINOWSKI & RADCLIFF-BROWN

1. Religion functions to relieve anxiety associated with death-related situations. 2. Death anxiety calls forth religious activities and rituals. 3. To stabilize the group of individuals who perform these rituals, group activities and beliefs provide a potential threat of anxiety to unite group members through a "common concern." 4. The secondary anxiety may be effectively removed through the group rituals of purification and expiation (the act of making atonement)

OBJECT & SELF MEANINGS ACCEPTING THE SELF AS TERMINAL

1. Self must achieve senescence, Erikson's eighth stage of life; the feeling of integrity that life has had value. Patient accepts terminal label. 2. Patient begins anticipatory death: bereavement for the self. Reinforced by: a. The role disengagement process b. The spatial isolation of the dying patient c. The terminal label by the medical society. 3. Dying patients need to feel they have not lost significance with loved ones. 4. Dying patients need to detach themselves from the living to make dying easier. 5. Kubler-Ross's five stages of Death and Dying are the process of accepting the terminal status for the self. 1. denial 2. anger 3. bargaining 4. depression 5. acceptance 6. Responses to Kubler-Ross a. The sequence of five is not universal. b. The stages are not mutually exclusive. c. The order of the stages is more arbitrary. d. The stages may be offered as a prescription rather than a description. e. The individual patient experiences may cause the emotions rather than the stages. f. Depression may actually be a function of physical diminishment & interpreted wrongly. Patient may not be depressed by dying but by physical effects of illness.

CHRISTIAN RITUALS

1. Service: hymns, eulogy, may have memorial service and persons speak from the group 2. Cleansing and arrangements: by the funeral home. 3. Disposition of the body: no prohibitions unless it denies the resurrection of the body. Embalming, cremation, autopsy ok. Dress is per family. 4. Mourning: family disengages from normal social functioning until funeral is complete. 5. Wake or visitation: approximately 5 hours to view the body and visit with family. 6. Rosary: service or prayer service sometime during the wake (Catholic). 7. Timing: 2-4 days after death (may be extended for travel arrangements). 8. Afterwards, mourners share a meal (a community rite of re-incorporation). 9. Organ donation is o.k.

CHRISTIAN BELIEFS

1. Share foundations with Judaism but: death is an entrance to eternal life and therefore, preferable to physical life. Strong beliefs in a. immortality of the soul b. resurrection of the body c. divine judgment of one's earthly life after death, resulting in eternal rewards of heaven or hell. 2. Catholics have four potential dispositions of the soul after death. a. heaven (joined eternally with God) b. hell (eternal separation from God) c. limbo (natural happiness state) d. purgatory (temporary punishment still required of sins that have already been forgiven.) 3. Funeral process illustrates twin themes of victory and loss. Funeral is primarily a worship service or mass of Christian burial. a. victory (through faith in Jesus Christ, the Christian has victory over death and eternal life with God) b. loss (the experience of human loss)

VALUE MEANINGS

1. The terminally ill eventually come to view death as a great blessing. 2. Dignity is more valued than is life with pain, indignity and suffering. 3. While we usually apply a negative meaning to death, to the terminally ill who has accepted it, death is a positive. 4. The terminally ill will discard much and cling tightly to their deepest moral values.

MIDDLE-AGED ADULTHOOD AGE 45-65

1. Time of greatest growth of the individual; main task is integration of the undeveloped dimensions of personality. 2. Must reassess and relinquish fantasy of immortality, omnipotence and grandiosity. ("Although I didn't become a millionaire at 30 as I had planned, perhaps I need to accept that I may never become a millionaire.") 3. Shift from future orientation to confrontation of awareness of death and mortality. 4. Concern for the next generation and acknowledgment of mortality. 5. The "Sandwich Generation" cares for both children and own parents 6. First generation to have experienced death at a distance. (Born in hospitals and no longer likely to die from infection; first generation to move into urban society where the butchering of animals and life, birth and death moved into hospitals, and also first in which person reached adulthood with only 5% chance that an immediate family member would die.) 7. Panic Begins. Must reconcile idealized self with actual self; dreams and potential accomplishments may have to change and be accepted. Biological Time Clock ticks. 8. Death comes closer emotionally. Peers, parents die. Children may die. 9. Re-evaluate values and priorities, deepening capacities for love and meaning in lives. 10. Discover and integrate previously submerged portions of personalities. It is also an exciting time. Second careers begin in this stage. 11. Personal growth continues. Energy moves into fulfilling oneself and plans for family and business/personal enterprises. Ones uses all skills to the utmost. 12. Focus from measuring time from birth shifts to measuring time to death.

CHILDREN - AGES 3-5

1. Understand death as separation or sleep; abandonment is equivalent to death. 2. Believe it is temporary and reversible. 3. Do not understand the universality of death. 4. Do not understand cessation of body functions. 5. Death is associated with lack of movement and with old age. 6. They view death as a male gender.

DYING CHILD - REASONS TO TELL

1. When children are kept in ignorance, they rarely grow beyond the initial stages of denial and isolation. 2. Silence is the most harmful thing we can do. a. The child misinterprets what is happening and why ("Mommy cries all the time. I must have been very bad.") b. The child cannot validate perceptions (who can correct what's unspoken?) c. If the family was less that communicative before, however, there is little hope that they will suddenly become more functional. d. Silence isolates children from support e. Silence puts a curtain around their most intense fears. 3. Dying children are mature beyond their years. a. Studies show that children with life threatening diseases were more mature about death than their peers who were healthy. Healthy children needed to acquire certain ages, cognitive developments, etc. to understand. b. Their understanding of the finality and irreversibility is years ahead of their healthy peers' knowledge due to their experience with the disease and treatment. c. With truth and support, they can handle anything as well or better than an adult can. 4. Children have tender hearts and consciences and "read" adults, often incorrectly. a. They may feel guilt at being the cause of sadness. b. They see phoniness around them, and believe they are being punished 5. Moderately aware and alert children know they're dying in the signs they see, despite efforts to shield the child. a. Any socialized child recognizes death activity: gifts given, an increase in medical treatments, visits from far away relatives, emotions in parents. THEY KNOW ANYWAY. b. Our job is not to "tell them" but to "be with them"; support them. They may have to die, but they don't have to die alone. c. Often they feel their underground understanding of their condition is knowledge they're not supposed to have, so they feel guilty and isolated.

TIME MEANING - DEATH MEANINGS

1. When does life become "terminal"? a. With birth/conception (cells divide 50 times at birth, 30 times at middle age, and few times in old age) b. With entrance into a "certain age" c. With the diagnosis of cancer or other terminal illness d. The day before the diagnosis? e. When medical people give up hope f. When the patient gives up hope 2. Do patients want to be "told"? a. Most want to be told. b. In the 1960's, only 10% of MD's favored telling patients. AMA left it to MD discretion. c. In 1980, the AMA encouraged MD's to tell the patient. By 1994, 95% of MD's told. 3. Doctor attitudes toward terminal patients a. Young physicians are less open about informing the patient of a terminal diagnosis. b. Ten years after graduation they have much more openness. 4. Should a diagnosis specify a time limit? (I know a man that had a brain tumor for 11 years before he died) a. It can discourage hope b. Give a range (Kubler-Ross). Medical science really cannot predict. c. Self-fulfilling prophecy: the concept that whatever is defined as real will become real by our actions.

YOUNG ADULTS - AGES 22-43

1. Young adults understand the universality, inevitability, and finality of death. 2. Understand that death is possible to anyone, anytime. 3. Are not concerned with death moment by moment. 4. Major task is to learn, practice and train self in the art of reaching one's fullest potential as a person and contributor to self-fulfillment, family and society. 5. At the same time, increasing incidence of AIDS creates more thoughts about death and the need to confront.

KUBLER-ROSS (5 STAGES OF DEATH)

1. denial 2. anger 3. bargaining 4. depression 5. acceptance

ANIMISM

1. the belief that natural objects, natural phenomena, and the universe itself possess souls. 2.the belief that natural objects have souls that may exist apart from their material bodies. 3.the doctrine that the soul is the principle of life and health. 4.belief in spiritual beings or agencies.

NEAR DEATH EXPERIENCES

9 Commonalities of those with a near death experience: 1. A sense of being dead. 2. Peace and painlessness. 3. Out-of-body experience. 4. The tunnel experience. 5. People of light. 6. Being of light. 7. The life review. 8. Rising rapidly into the heavens. 9. Reluctance to return.

PRN - PRO RE NATA

A traditional medical approach that means that medication is to be given "as the situation demands." In practice, it means that patients must first hurt and ask for relief before pain management can be administered.

MALE & FEMALE

Although male conceptions and births outnumber females, female life expectancy is longer than males. — Males are conceived at 120:100, yet born at 105:100 (higher death rate) — Despite early century childbirth deaths, women who survived lived longer than men — Mortality for almost all fatal diseases is higher for men — Women may be protected by hormones (heart disease, less iron due to menses) — Evidence that life expectancy is higher for females in other species — Culturally, women pay more attention to diet, weight — Women have superior use of emotions, reducing stress-related diseases — Males have higher involvement in risk-taking activities — Men have higher stress positions (CEO, administration) However, women have a higher morbidity rate than men: women are sick more often but live longer; men are sick less often but die sooner. — are women more willing to report they are sick? — are men more "macho" and thus unwilling to admit sickness? — Chronic illnesses more common in women, but less severe

EUPHEMISM

Avoid Euphemisms when speaking to children. "Grandfather can breathe easier now"

AWARENESS CONTEXTS OF DYING Communication w/ Terminally Ill

Awareness context: what each interacting person knows of the patient's defined status, along with the recognition of the others' awareness of his or her own definition. a. Closed. Staff knows; patient has not officially been "told". Staff constructs a fictional future biography. However, most patients recognize death related situational and spatial clues, so this stage is temporary. b. Suspicion. Staff knows; patient suspects but receives no verification. Contest for control between patient and staff. c. Mutual pretense. Staff knows; patient knows without verification and all pretend that the patient will get well. d. Open awareness. Everyone knows the patient is dying.

DEATH EDUCATION - MEDICAL SCHOOL - SENSITIVITY TO SOCIAL & PSYCHOLOGICAL NEEDS

Certain medical schools ahead of the scale provide courses where the student follows the death of the patients with these goals in mind: 1. Learn to talk with, and listen to, sick persons. 2. Learn to establish a professional relationship without the intrusion of friendship. 3. Ascertain the meaning of compassion without sentimentality and the need for humility in the context of the physician's ignorance. 4. Learn of our common frailty as human beings, the finality of death, and the need that we all have for companionship when death is near. 5. Enrich the students' understanding of those in their care.

DYING CHILD - PARENTS OF

Children are "not supposed to die before their parents" so the grief is more tragic and traumatic. a. Symbolically, a parent will die with the child. b. They survive in a damaged state with little or no desire to live today or plan for tomorrow. c. Parents lose a part of themselves, but also lose hope for the future. 1. Relationship with the pediatric oncologist 2. Religious beliefs 3. Anticipatory grief - Kubler-Ross Stages 4. Guilt - 1/3 of all parents feel guilt Before death a. They blame themselves for not seeking care earlier. b. They reflect on earlier events even the pregnancy, searching for reasons for their child's illness. c. It may result in over indulgence of the child or blaming the spouse. After death a. Ambivalent relationship while the child was alive, marked by hostility. b. Previous desire for child's death. c. Feelings of anger at the deceased for dying. d. A wish that more had been given of oneself while the child was living. 5. Emotional response to the child 6. Parents try to "do it all" and have extra needs for support. 7. The parental relationship a. Parental relationship suffers b. Parents have different styles of grieving, which affects communication c. A strong marriage will survive and strengthen, while a weak marriage will collapse with the death of a child. d. Higher divorce rate in parents after the death

EDUCATION - DEATH & DYING

Decreasing anxiety for own and others' deaths; Increasing MD/RN communication patterns with patients; the creation of the hospice movement; increasing communication with families and patients, giving patients choices regarding their own deaths.

CANCER - DEHYDRATION

Dehydration reduces nausea, vomiting, and abdominal pain. It decreases urine output thus decreasing the incidence of a UTI. Pulmonary secretions also decrease. Dehydration reduces swelling in the body reducing pressure on tumors if they exist. Dehydrated terminally ill patients often report less pain discomfort than patients receiving medical hydration; thus their need for pain medication is less.

COST OF DYING

Direct costs include a wide variety of types of medical care from hospital to home based care. (medical staff, medication, use of facility) Indirect costs include overhead costs. (postage, utilities, maintenance) Health care costs are paid for with 1 or a combination of the 3 options: 1. Direct payment from the consumer. 2. Private insurance • Considered a 3rd party payment. • Managed care organizations have formed to limit coverage of private insurance. 3. Government taxation • Medicare • Is for the elderly. • Part A Medicare is hospital insurance. • Part B Medicare is supplemental insurance for doctor's visits, outpatient care, lab fees, and home health care. • Medicaid • Is provided regardless of age. • Exists for those who don't have insurance. • Health-care in the United States is closely linked to employment status. • The cost of health-care in the United States is approximately 2.5 trillion dollars annually. • Byock, "To be terminally ill or elderly in America today is to be reminded frequently that you are a drain on the nation's resources." Our society values youth,

ORGAN TRANSPLANTATION

Facts: • 25 different kinds of tissues and organs are used for transplantation. • The first modern human organ transplant was a kidney in 1954. • The Uniform Anatomical Gift Act permits persons 18 years and older to donate all of or part of his or her body upon death. • Some 95,000 U.S. patients are currently waiting for an organ transplant. Problems affecting human transplantation: 1. The donor and donee tissues must be compatible. 2. There is a shortage of donors leading to problems in deciding who gets the organ. 3. The legal definition of death can prevent surgeons from removing healthy organs soon enough for transplant. 4. A lack of a nationwide communications network to coordinate information. 5. Who will pay? Many insurance companies will not pay, leaving the organ to ―the highest bidder also known as the person who can afford such surgery.

HOSPICE

Hospice addresses several primary patient concerns in its patient-centered concept: a. symptom and pain control b. apprehension caused by having others in control of one's life c. anxiety about being alone at time of death d. quality of life e. home-like setting Hospice goals are to: a. promote patient-family autonomy b. assist patients in obtaining pain control and real quality of life before they die - social - psychological - financial - spiritual c. enable families to receive supportive help during the dying process and in the bereavement period.

DR CICELY SAUNDERS, RN, LSW, MD

In 1967, St. Christopher's Hospice in London expanded the concept of ministering to the spiritual and physical needs of dying patients. Dr. Cicely Saunders, RN, LSW, MD, and founder, became an international influence on the hospice movement.

DYING CHILD - WHO SHOULD TELL

PARENTS: (pro/con) a. Parents must come to grips with the truth themselves in order to tell children b. Parents want to tell the child in the context of their own beliefs about the meaning of death, dying, afterlife, etc. c. Sometimes, parents cannot tell a child. However, at some point, hope changes its direction from hope for survival from hope for a peaceful and pain-free death. d. Parents must often later tell a child that they can go. OTHERS (DOCTOR, TRUSTED ADULT, NURSE) pro/con a. Controversy in previous years about nurses (other adults) telling when the doctor or family didn't want it to be told. THEREFORE, OPEN COMMUNICATION IS A MUST. Imagine planning to tell your child of their condition when you visit in the afternoon, only to arrive and find someone else has already told them. b. Parents already feel out of control c. Must have permission d. Once knowledge is out in the open, other adults can be valuable resources

Sociological Approach

Structural-Functional Theory positive and negative results of social interaction as well as the intended and unintended consequences of death-related behaviors. Conflict Theory- Focuses on competition, conflict, and dissension resulting from individual and groups competing for limited societal resources. Social Exchange Theory Says that a person will continue to participate in a social situation (such as a funeral) as long as they perceive that they will get equal benefits for their participation (even though they really don't want to be there) Symbolic Interaction Theory-Based on Symbols. SYMBOL: anything to which socially created meaning is given. Symbols are re- discovered and re-interpreted to give new meaning to new generations.

DYING AS DEVIANCE IN MEDICAL SETTING

The dying patient is a deviant in the medical subculture because death poses a threat to the image of the "physician as healer." • The labeling theory focuses on the outsiders looking in and reducing the dying patient as a "whole and usual" person to a "tainted and discounted" one. • People with HIV/AIDS would be a "double deviant" because outsiders would be more interested in how the person got the disease as opposed to the fact that they have it and need help.

FAMILY & FRIENDS

Tips for family & friends: Make contact- what you say is not as important as the fact that you touch base. Realize the ongoing human needs of the dying patient to be a part of relationships. Discuss your relationship with the dying patient. Participate in ways you and the dying patient feel comfortable. (i.e. reading, massages, listening to music) Move through the process of dying with the patient. Realize that the nurses or aides may become the family to the dying patient in certain situations. Realize that counseling and self-help groups may be appropriate as time wanes on. Allow yourself respite. You can't do it all for the dying patient.

CANCER - TREATMENT OPTIONS

Traditional Cancer Treatment Options include: 1. Surgery 2. Chemotherapy 3. Radiation Non-traditional Cancer Treatment Options include: 1. Immunotherapy -treatment by stimulation of the body's own immune system. 2. Chiropractic Medicine- hands on manipulation of bones that can promote healing. 3. Homeopathic Medicine- the use of natural drugs to treat patients. 4. Acupuncture- a traditional Chinese medical treatment using needles to redirect the energy flow. 5. Faith healing- the use of power of suggestion, prayer, and faith in God to promote healing. 6. Folk healing- the use of ―folk remedies‖ such as ginger tea and honey.

CANCER

a group of diseases that are characterized by an uncontrolled growth and spread of abnormal cells. • Cancer is the second leading cause of death in the United States, claiming over 500,000 lives per year. • Causes of cancer include chemicals in the air, drinking water, food, and hereditary factors. • In the United States the rate of cancer cases and deaths for all cancers combined declined between 1990 and 1997. Perhaps this was a result of better education and more frequent screening and earlier detection. • Individuals are living longer with cancer. • Lung, prostate, breast, and colorectal account for slightly over half of all new cancer cases and are also the leading causes of cancer deaths for every racial and ethnic group. • Cancer incidents and mortality rates are higher for blacks than for whites. • Lung cancer is the most lethal cancer for both men and women. • The most common symptom of cancer is anorexia, the loss of appetite or desire to eat.

RITUAL

a set of culturally prescribed actions or behaviors.

DYING WITH DIGNITY

a. A good death: The way society expects one to die. The patient is obligated not to commit suicide or other improprieties b. An appropriate death: dying the way one wants to die, generally consistent with an individual's life patterns. c. An easy death: Suffering is avoided d. A finest hour death: death is faced as a part of life, without self-pity, with concentration of the needs of others and maintenance of dignity and self- composure. (John Wayne in Cowboys) e. A heroic death: death where pain is endured as a test of bravery, courage and heroism. (Medal of Honor death.)

CHILDRENS CONCEPTS OF DEATH AFFECTED BY:

a. Age (developmental maturity) older children have more accurate concepts b. Cognitive level: greater maturity and deeper levels of thinking are predictable in understanding death c. Experience: those with experience are more likely to believe in personal mortality d. Family dynamics: some families talk more about things than others; euphemisms, some have more or less death experience, parents reflect good or bad experiences e. Religious culture: religions include children f. Separation from death as a natural process due to urbanization and modernization a. children do not see birth and death on the farm b. up until 1900, every family had children who died c. the generations are separated g. TV's influences on development of death concepts a. reversible b. children unable to question c. of all of the deaths on TV, how many are natural? h. Death education is frequent and graphic in nursery rhymes. Perhaps because death was so frequent and "normal" when they were written. What do kids think? (See variations on Mother Goose.)

RELIGION & DEATH ANXIETY

a. Religion functions to relieve anxiety associated with death-related situations. b. Death anxiety calls forth religious activities and rituals. c. In order to stabilize the group of individuals who perform these rituals, group activities and beliefs provide a potential threat of anxiety in order to unite group members through a "common concern." d. This secondary anxiety may be effectively removed through the group rituals of purification and expiation.

RELIGION RELIEVES DEATH ANXIETY

a. least religious: low anxiety from secular fears b. slightly religious: feel the anxiety from religion (hell), but none of the comfort. c. more religious: feels less anxiety, more comfort (heaven) d. most religious: least death anxiety

MARGINAL SITUATIONS

are unusual events or social circumstances that do not occur in normal patterns of social interactions, which force individuals to the realm of the transcendent in their search for meaningful answers. "Death is the marginal situation par excellence." and (page 119) "Religious-meaning systems provide answers to these problems of uncertainty, powerlessness and scarcity created by death. Unusual Circumstances: a. Uncertainty: human activity does not always lead to predictable outcomes. b. Powerlessness: obviously. Four examples are death, suffering, coercion and natural disasters. c. Scarcity: inequity is the basis for the human experience of relative deprivation and frustration.

1953 UN Criteria

death was "permanent disappearance of all evidence of life at any time after birth has taken place." Death could only take place after a live birth, thus a definition of fetal death was required.

Psychological Approach

examines the experiences of pain, death anxiety, and emotional stages of dying.

Biological Approach

examines the process of dying as being biological- something that the body does to the person.

KARMA

moral law of causation; suggests that human actions produce results for which the individual is responsible. Also refers to the balance of good and bad deeds in previous existence.

Anthropological Approach

studies rituals with which people deal with death and hence celebrate life.

LEMINGS

study showed that the higher the level of religious commitment the lower the level of fear of death.

MOKSHA

the reward for living a saintly life; achieved by acquiring true knowledge, performing good deeds, and living a life of love and devotion toward God.

ENVIRONMENT/DYING PERSON NURSING HOME

• 2/3 of persons who consider a nursing home their usual place of resident will remain there until death. • Nursing homes are usually perceived as the "last residence" and "where you go to die". • The daily routine is set by the administration and is usually followed closely. • Although residents define their future in the nursing homes in terms of death there are actual certificate programs now that train people how to help the elderly live. ACC has one of these programs. It's called an Activity Professional Training certificate and those that go through the program generally work at nursing homes and help plan activities for the elderly. There is little money in this but it is a very noble cause. Anyone that wants to teach people how to live instead of die should be commended.

NORMALIZATION OF DYING - MEDICAL SETTING

• Normalization of dying refers to maintaining roles, relationships, and identity, though dying. • Others may tend to be overly protective of one with a terminal illness. • It is the role of the terminal patient to teach the staff of the hospital that they are going through a normal process. • The patient often loses control of tasks often performed by them.

AMERICAN HEALTH CARE SYSTEM

• Physician responsibility • Way of life emphasizes: Individual-centeredness Autonomy Assertiveness Independence Youth-oriented perspective • Practice Western Medicine • Consistent care by private insurance • Patients die in hospital

DYING IN TECHNOLOGICAL SOCIETY

• Technological imperative is a concept that believes that if we have the technological capability to do something, we should do it. • Moral imperative also guides and rationalizes medicine's specific practices, especially reliance on and commitment to uses of technology. • Technological imperatives have lead to high-tech wards that have expensive equipment and require specialized support workers and thus has caused the costs of health care to escalate significantly. • Technology can give a physician unrealistic expectations about their own abilities. • Along with the wonderful things that technology can do for us today, it also brings an element of bureaucracy with it.

DEATH EDUCATION - MEDICAL SCHOOL - COMMUNICATION SKILLS

• The majority of physicians agree that more emphasis in medical school should be placed on communication skills with terminally ill patients and their families. Yet many gave their schools a poor rating in this area. • Perhaps the medical schools don't think there is time to add another class to the curriculum but look at the topics that could be included. A doctor could write a textbook about this topic and market it to the medical schools. It might include these topics: 1. Non-traditional pain control. 2. How to use drugs to relieve discomfort. 3. How to encourage family participation. 4. How to turn off respirators to the benefit of the patient. 5. How to prepare a family for the physical changes that will take place. 6. How to talk to the patient through reassurance that abandonment will not take place. 7. Management of Care in different settings. (i.e. Hospice, hospital, home) 8. How to offer spiritual and emotional support. 9. Raising and discussing issues with family, clergy, or counselors relating to care. 10. How to conduct patient interviews. (To find out about things like living wills.) • It should be noted that Doctor's are not necessarily cold, heartless individuals but rather people that have been trained how to save lives, not help people die. This is a learned process.

CRITICALLY ILL - PUBLIC POLICY & HEALTH NEEDS

• Utilitarianism is the belief that social policy should be directed toward providing the greatest good (maximum benefits) for the greatest number of people. The problem with this theory is: o Who decides who will live or die? o At what age should a person become ineligible for health care because "they won't live much longer anyway"? o Who will volunteer to say, "I don't want to be a burden on society- so just kill me." o Who decides how much money a person's life is worth?