Chapter 11 - Death And Bereavement

Social Needs (5 Interacting Needs)

-Disclosure of diagnosis -Mutual pretence Withdrawal: -Geographic: moving for treatment to a hospital or moving into home to die/tx. Physically moved outside of the community. -Dying persons withdraws due to pain, lapses into unconsciousness, depression. -Social avoidance; don't want to see people because you don't like how you look such as skinny, loss of hair, lesions, etc.

What are the 4 meanings of death?

1) Death as an organizer of time. 2) Death as punishment. 3) Death as transition. 4) Death as loss.

What are the two important cautions regarding the fighting spirit and its connection to disease?

1) No link has been found between depression/stoic acceptance/helplessness and a more rapid death from cancer. 2) Its not clear that the same psychological response is necessarily optimum for every form of disease. There is some link between psychological responses to stress (fatal diagnosis and prognosis) but nobody has zeroed in on what those physiological processes may be and their critical nature for each disease. An important element is their response to imminent death and the amount of social support they have available. High levels of social support are linked to lower levels of pain, fewer depressive symptoms, and longer survival times.

How many people in the USA die each year after experiencing prolonged illness?

90%

Holistic Process

A dying person is a living person and they do all the things and have all the feelings a regular person does. They have needs, contributions, desires, etc. There are 5 fundamental and interactive needs which is dynamic as needs may change: Physical, spiritual, emotional, psychological and social. These 5 all interact and change. 1) Sequentially: -Incrementally (such as increasing faith). -Decremental (progressing liver failure) 2) Randomly: -Resources such as physical, financial, social, medical can all increase and decrease well-being. 3) Cyclically: -Can feel strong then bad, lucid then fuzzy, back and forth.

Ritual Mourning

A set of symbolic rites and ceremonies associated with death and bereavement. They have clear and important functions. Seeks to control the disruptiveness of death and make it meaningful. Funerals as a method to accomplish the work of completing a biography, manage grief, and build new social relationships after death. Provide roles to people and clarity of the role shapes during the days and weeks following the death. Prescriptions on what to wear, who to notify, food, unites, type of service, social rules. Give meaning to death by emphasizing the meaning of life; death rituals including eulogies, photos, witnesses, etc. Helps to make the death more acceptable.

Farewells

A significant feature for a dying person. Many people don't plan them, and some on final days/deathbed. Early farewells are usually in the form of a gift or letter; money or passing on personal treasures. Planned and completed farewells are mostly in the form of conversations. Talking with friends and family one last time. The dying person signals that a person matters enough to warrant a farewell. It serves to make the death real, force the imminent death outward from denial to acceptance for both the dying and loved ones. It makes dying easier especially if completed before final moments of life. Helps reach acceptance.

Why don't people use hospice care?

Because of the increasing number of people with heart disease and Alzheimers which aren't predictable. Also, the psychological blocks patients and family have against accepting death as imminent. And the difficulty some physicians and family members have in ceasing aggressive treatment.

Kübler-Ross

Book based on terminally ill adults and children. Five stages of dying: denial, anger, bargaining, depression and acceptance. Not all stages are experienced by all and don't necessarily occur in the same order. Terminology used to describe the reactions to impending death of both the person who is dying and those who are bereaved. Denial: A valuable, constructive first defence. Gives patient a period of time to look at strategies and cope with the shock. Ex: "It must be a mistake," or "Ill get another opinion." Anger: Second reaction. People can be resentful at the healthy, or angry at fate. May be reflected in angry outbursts at family, friends, hospital staff, anyone. Bargaining: Anger replaced by a new defence. Trying to make a deal, or adjustments. Ex: "If I do this...then maybe I can live long enough for that." Depression: As disease progresses and body declines, people become depressed. A kind of mourning, for the loss of relationships and the loss of one's own life. Acceptance: Final step. A quiet understanding. Readiness for death. No longer depressed but maybe quiet or serene. The publication changed the way society treats death and dying. People are considered whole, not failures, they want to die at home not in a hospital, most reach a point when they choose not to continue with heroic measure for comfort or dignity and refuse treatment. They have a need for pain management, counselling, and information. Three key issues: 1) Dying are still alive and have unfinished needs, 2) Listen to them actively and identify what their needs are, 3) Learn from them.

Psychological Needs (5 Interacting Needs)

Control and independence: -Medication dosage/schedule -Advanced directives (living will; power of attorney) -Death Instinct; Thanatos "good death". -Medical Assistance in Dying (MAID); Enacted in Canada in 2016 Contribution to others: -Increases self-worth; decreases feelings of being a burden (i.e., re-established relationship equity) Life review: -Ego-integrity; purpose and meaning. -Validation from others -Reduces emotional pain (e.g., David Kuhl)

Gender And Death

Death anxiety is linked to gender. Women have higher levels of death anxiety than men. The gender difference was found all over the world.

Death As Transition

Death involves a transition; from life to some "sort" of life after death, or from life to nothingness. 74% of people in the USA believe in an afterlife. 27% believe in reincarnation.

Death As An Organizer Of Time

Death is the endpoint in life. So the concept of "time of death" may be an important one for a person trying to organize their life. One of the key changes in thinking during middle age is the switch in the way a person marks their own lifetime from birth to time of death. Before middle age people think life stretches out ahead of them, with lots of time and lots of plans. When approaching mid life, they wonder if there is enough time to complete everything they want to accomplish.

A Good Death

Death with dignity, with maximum consciousness and minimum pain and the patient and their family having full information and control over the process.

Medical Assistance in Dying (MAID)

Different terminology across jurisdictions, but... -Active euthanasia - physician or nurse practitioner directly administers a substance that directly causes death. -Passive euthanasia - patient dies either due to withdrawing (e.g., switching off life support) or withholding treatment (e.g., stopping fluids) to intentionally end a patient's life. -Medically assisted suicide - physician/nurse provides lethal drug which patient self-administers. Bill C-14 (passed June 14, 2016) -Allows eligible adults to request medical assistance in dying. -18 and mentally competent; grievous and irremediable condition; give informed consent.

Sense Of Purpose In Life

Discover of satisfying personal goals and the belief that one's life has been worthwhile. Certain personality traits are linked to death anxiety; high levels of self esteem seem to serve as a buffer. People who have higher senses of purpose in life have lower death anxiety. Its also linked to lower levels of death anxiety in younger adults. Regrets are linked to death anxiety. People who feel a lot of regret for things they have and have not done have higher levels of death anxiety. Erikson's theory can be applied to sense of purpose. Adults who've completed major life tasks, filled roles and the demands, and who have developed inwardly tend to face death better. But those who didn't resolve tasks or dilemmas, are more fearful and have more anxiety - Erikson's despair.

Hospice Care

End of life care focused on pain relief, emotional support, and spiritual comfort for dying patients and their families. 44% of deaths is USA are hospice deaths. The most common condition patients seek care for is for terminal cancer 38%. Designed to provide care for last 6 months of a person's life, with the average length of stay under 2 months primarily because of the difficulty in predicting the course of many terminal illnesses.

Death Anxiety

Fear of Death. Strongly linked to the view of death as a loss. If death is feared its because in part due to fearing the loss of experience, sensations and relationships. It may also include teh fear of pain, suffering, or indignity during the death process. Not being able to cope or potential punishment following death. Or loss of the self. Is affected by age, gender, religiosity, attachment styles and TOM shifts (funerals vs celebrations of life) and cultures. Age: Connection between age and death. Older people a little less fearful while younger people don't think about it. Middle age people are the most fearful. Gender: Differs in the process of dying. Religiosity: A non-linear relationship, similar spectre to age related differences. Atheists aren't as fearful, super religious not as fearful but if unsure then are most fearful. Attachment Styles: Death being the ultimate separation.

Palliative Care in Canada

First palliative care unit established in Montreal in 1974 by Dr. Balfour Mount. Aimed at relieving suffering and improving the quality of life for persons who are dying from advanced illness - includes family members as well World Health Organization (WHO) aspects of palliative care include: -Relief from pain/suffering. -Dying is normal process. -Focus on psychological and spiritual aspects of patient care. -Uses team approach. -Help patients live as actively as possible until death.

Organ Transplant Donor

Individual who agrees to the transplantation, at the time of death, of his or her usable organs and other tissue to approved recipients. Most people view their decision as a way to give back to others and gain a little immortality.

Death As Loss

It is most pervasively seen as a loss. Loss of the ability to complete plans, projects, loss of the body, mind, feelings, experiences, touch, relationships, etc. There are age differences in how one thinks about death as loss. Adults associations about death change as they age through adult years. Young adults are more concerned about loss of opportunities and experiences and the loss of family relationships. Older adults are more concerned with the loss of completing inner (transcendence) work.

Death As Punishment

Kids are likely to think of death as punishment for being bad, like stage 1 in Kohlberg's theory. This view and its reverse thinking (long life is a reward for being good) is still common in adults. The view is strengthened by religious teachings that emphasize a link between sins and death.

Emotional Needs (5 Interacting Needs)

Kubler-Ross: Denial (as a short term strategy can be effective), Anger, Bargaining, Depression, Acceptance Retsina's critique: -Elderly adults have a death "reference group" -Ambiguous "dying trajectory" (see next slide) -Elderly adults already "roleless" -Elderly adults may see death as "timely" -*Reference group was a group of middle aged, mainly white people with a certain disease with a quick certain death. Fear: -Pain -Rejection and social isolation -The unknown (living/dying trajectories) -Certain death at known time (liver cancer) - gives people a reason to do things, complete tasks or final wishes. -Certain death at unknown time (cystic fibrosis) -Uncertain death but at a known time (advanced heart disease with outcome dependent upon success of surgery). Speed and duration of illness. -How people deal is different between them. -Uncertain death at unknown time (multiple sclerosis or surgeries). Grief: -Unfulfilled ambitions; bucket lists. -Physical losses; loss of one thing such as energy or beauty. -Part of problem is death can be ambiguous, there is a dying trajectory. -Some people are already rollers, no longer an employee, or worker, or student. Stripped of roles and responsibilities. Or may see death as timely. Hope: -Cyclical -Could be new drugs or a new surgery. -Hope that one won't die. -Hope there is enough time to repair a relationship. -Hope in the afterlife.

Living Will

Legal document that states a person's end of life decisions. A document that takes effect if you are no longer able to express your wishes about end of life decisions. Give people the opportunity to decide while they are still healthy the specific treatments they would accept or refuse if they had a terminal illness, disability, or unable to communicate. Are prepared by an attorney or online. 29% of adults in USA have one, 54% of those 65 and older. They help alleviate the fear that death will be a long and painful process. Helps one to take responsibility for their own end of life decisions and not burden family members. Also helps to avoid stressful situations where people may not agree; spiritual differences in treatment.

Age And Death

Middle aged adults show greatest fear of death, older adults the least, younger adults falling in between. These findings are consistent with the idea that one of the central tasks in midlife is to come to terms with the inevitability of death. Greater knowledge of body changes and aging is in this period, the death of parents, which breaks down defences against fear of death. When parents die, its not only sad but people become faced with realization that they are the oldest in family lineage/generation and they are next in line for death. People are more aware and more fearful. Many come to think of death in new ways, eventually accepting it in a different way, and fear begins to recede in older age. Older adults are more likely to talk about death and think about it than younger adults. Even though its highly salient, its not as frightening in late life.

Choosing Where To Die

Most adults report they would prefer to die in their homes but the majority die in hospitals and nursing homes. In a study in Denmark, 84% wished to be cared for at home and 71% wanted to die at home. But only 1/2 actually were cared for and died at home. The two major factors were having a spouse or partner and being in contact with a palliative care team. Another study found that respondents, when asked about their deceased family members place of care, 1/3 died at home, 2/3 in an institution. The critical difference in quality of care was whether they received home-care nursing services and NOT whether they died at home or elsewhere. Responses about quality of care indicated little difference between dying at home with nursing services, in a nursing home, or hospital. 1/2 or less said that family members who spent last days in those situations received excellent care. 70% whose family members died at home with hospice care said it was excellent care.

Bowlby's Grief Stage Theory

Neo Freudian. Stage like. Everyone must go through all the stages in a fixed order, and the person is in one stage or another with no crossover. One cannot skip stages or return to it. The result of the grief work is that at the end of the stages, the bereaved have adjusted to the loss and regained normal lives. Has four stages: numbness, yearning, disorganization and despair following by a time a reorganization. It was believed that people needed to experience trauma and the proper stages of grief in order to be "normal". If healthy grieving didn't take place, then some kind of pathology was present like denial or repression. If so, clinical intervention was recommended to help the person work through hidden, unresolved grief feelings.

Attachment and Death

On the DAS test (Death Anxiety Test - Manifest test) which blatantly tests death anxiety, and the LAT test (Thematic Appreciation Test - Latent test) which sneakily tests death anxiety, study looked at securely attached, anxious and avoidant adults. DAS Test They found that securely attached and avoidant adults scored low on manifest anxiety but those who were anxious scored high. TAT Test Those who were securely attached scored low on latent anxiety, but those anxious or avoidant scored high.

Religiosity

Outward expression of spiritual beliefs. Two separate factors: extrinsic and intrinsic. Extrinsic Religiosity: Practiced by people who use religion for social purposes and as an arena for doing good deeds. Found to be positively related to death anxiety - people scoring higher on measures had higher fears of death. May be useful for middle aged adults who focus on social support and chances for generative activities. Intrinsic Religiosity: Practiced by people who live their lives according to their beliefs and seek meaning in life through their religion. Strong positive relationship with anticipation of a better existence after death. In later years, intrinsic is good because it can help one find meaning to the fundamental questions of life.

Physical Needs (5 Interacting Needs)

Pain: -Self-medication (increase control; decrease anxiety). -People use less meds when they can control their own injections. Body image: -Changes due to progression of disease (e.g., frailty); or surgery (e.g., radical mastectomy, amputation).

Stages of Grief

Parkes (1970); Bowlby (1980): Numbness Yearning Disorganization and despair Reorganization

Spiritual Needs (5 Interacting Needs)

Personal values, moral philosophies, and religious belief systems; legacies, memoirs, stories. -Search for meaning; heaving thinking. -In one's life -Transcendence (symbolic immortality via legacy) -Hope

Hospice Approach

Philosophy that underlies hospice care. Specifically that death is inevitable part of life, that the dying person and the family should be involved in as much of the care as possible, and have control over the setting, and that no life prolonging measures should be taken. Control over care and the care-receiving setting should belong to the patient and family. Medical care should be palliative and not curative. Pain should be alleviated and comfort maximized, but a minimum of invasive or life-prolonging measures should be undertaken. Death should be viewed as normal, inevitable, and not to be avoided. Acceptance. A multidisciplinary team of physicians, nurses, etc who are trained and experts in support and therapy. Pain and symptom control for comfort and control. Spiritual care, home care or inpatient, respite care for caregivers, family conferences for information, sharing feelings and expectations, asking questions, bereavement care and support groups, open communication and help with funeral and clergy.

Finitude

Process of coming to grips with one's eventual death. A process that occurs over time and at many levels. Practically: Make a will, get life insurance, make preparations. More common with increasing age; esp. in late middle life and after. 55% of adults in USA have made a will, compared with 83% of adults 65 and older.

Religiosity And Death

Research findings say there is no direct relationship between religiosity and fear of death. A study looked at older adults who were low and those who were high in beliefs and found they both feared death less than participants who were moderate (unsure). It was an inverted U. This suggests that people high in religiosity aren't anxiety ridden because they believe there is an afterlife. Those low aren't anxious because they don't believe in it so they're not worried about missing out. Those in the middle are most anxiety ridden because they may or may not believe in an afterlife, and may or may not have earned a place.

What is the most common reaction to grief?

Resilience

Reminiscence

Review of one's personal memories. Often done by writing a memoir, autobiography, seeking out old friends and relatives to talk about the past. A way to review and legitimize one's life.

Physician-Assisted Suicide

Situation in which physicians are legally allowed to assist patients, and under certain circumstances, obtain medication that will end their lives. Other requirements are voluntary request for the medication, be terminally ill, mentally competent and approved by second physician. In USA a waiting period of 15 days and prescription registered by the state. The most frequent reasons it seems for people to choose this method is loss of autonomy, decreasing ability to participate in activities that made life enjoyable, and loss of dignity. Of terminally ill patients who support it, only around 10% seriously consider it. Those more likely to consider it sometimes have depressive symptoms, substantial caregiving needs, and pain. Less likely are people are those who feel appreciated, are 65 years and older, and African American. Although, people will change their minds and those who didn't support it may now do so, while others may develop depression or physical difficulties.

Are people depressed after loss?

Studies have found that most people fail to show even mild symptoms of depression. Other studies have shown that positive emotions, including smiling and laughter, are present when they discuss their losses and promote well-being. People express more positive feelings than negative, experience feelings of personal strength and self-growth, and relationships grew stronger. This includes caregiving, and those who are the most positive in the experience, show higher levels of psychological well being. People typically don't follow stages or are overwhelmed by negative thoughts. Researchers have found 5 patters of adjustment and the preloss factors that predicted each pattern. 1) 46% resilience 2) 16% chronic grief 3) 11% common grief 4) 10% depressed-improved 5) 8% chronic depression When quality of marriage is compared to grief response, there are no differences between the top 3 groups. The group that showed significantly low quality of marriage scores was the depressed impoverished group. They had high levels of depression prior to the death and improved after they died. Which suggests that the relative absence of grief shown by bereaved individuals is due to poor relationships before the loss.

Individual Adaptations to Dying and Immune System

Studies have found that psychological differences are linked to the immune system. Immune NK cells, thought to be important defences against cancer cells, have been found in lower rates among patients who report less distress and seem better adjusted to their illness. In an AIDS study, T-Cell counts decline more rapidly among those who respond to disease with repression over those showing a fighting spirit.

How does death have important social meaning?

The death of any one person changes the roles and relationships of everyone else in a family and within friendships. When an elder dies, everyone else in the lineage moves up one step in the generational system. It also makes opportunities for younger adults to take on significant tasks. Such as retiring serving some of the same functions because an older adult steps aside for the younger generation.

What are the biggest concerns in choosing where to die?

The lack of emotional support for a patient is the biggest concern. Other factors are lack of contact with physician, lack of communication, lack of respect, lack of emotional support for family, lack of information about what to expect when patient was dying, not knowing enough about patients history to provide the best care, lack of pain relief, and lack of help with breathing.

Death Attitudes

We live in a death "defying" society (although attitudes are changing). -Dying individuals placed in special wards in hospitals. -Death is not as hidden anymore. Definitions of death evolve cessation of breathing; brain dead; coma (consciousness); anacephalic (without brain, just a brainstem).. Death anxiety is a powerful motivator. Humour as a way to deal.

Do variations in the emotional response to an impending or probable death have any effect on the physical process of dying?

Yes. There are adaptations to dying. Greer and Colleagues found adaptations by studying women with breast cancer and found: Positive Avoidance/Denial: Patient rejects the diagnosis and evidence presented. Fighting Spirit: Showing optimism, actively searching for more information and expressing a desire to fight the disease in any way possible. Stoic Acceptance/Fatalism: Acknowledging the diagnosis, but not seeking further information while continuing on with normal life. Helplessness/Hopelessness: Overwhelmed by diagnosis and considers themselves to be gravely ill without hope. Anxious Preoccupation: Responding to the diagnosis with extreme anxiety and interpreting additional information pessimistically. Interprets all body sensations as possible recurrence. 15 years later, women who had reacted with positive avoidance for fighting spirit had died (35%) while 76% whose reactions were stoic, anxious or helpless/hopeless. This supports the hypothesis that psychological response contributes to the disease process just like coping strategies. Another study of cardiac patients found that having a repressive coping style with a tendency to minimize distress and avoid negative emotions in response to diagnosis reported lower levels of depression, anxiety, anger, sadness and fear. 6 years later these people had died of any cause, heart disease or nonfatal heart attacks over people who exhibited other styles of coping. Even though they weren't reporting negative emotions they were experiencing physiological signs of distress, and low adherence to medical recommendations. As a result of their healthy coping "appearance" they were considered low risk, but actually at increased risk. People who report less hostly, are more stoic and helpless die sooner. Those who struggle, fight, express anger, and find joy live longer.