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pallative care Chapter 19: Death and Dying nDevelopment Across the Lifespan Death is a universal experience, one

that we will all eventually face Some things that are being explored: What is death, and what does it mean at different life stages? How do people face the idea of their own death? How do survivors react to death? How can people prepare for and cope with death? Defining Death: Determining the Point at Which Life Ends Defining death is a complex process. Medicines definition changes; people who would have been considered dead a few years ago now would be considered alive FUNCTIONAL DEATH is the absence of a heartbeat and breathing. NOT as straightforward a definition as it seems! People can be resuscitated after they have stopped breathing. People can be kept alive by a machine Because of the vagueness of what functional death is, medical doctors now use brain functioning to determine death BRAIN DEATH, where brain activity is measured, has become the medical measure of death (no possibility of restoring brain function). There is still some question about using only brain waves as the death definition. nIt emphasizes only biology not the qualities that make people human (thinking, feeling, etc.).

Death Across the Lifespan: Causes & Reactions We associate death with old age, but death occurs throughout the life span. Infant and Childhood Deaths: the US has a high infant mortality rate. Parents dealing with infant death have a very hard time and depression is a common reaction. Prenatal death (Miscarriage) is also difficult, especially since others do not attribute much meaning to a miscarriage so parents feel isolated.

Children do not have a realistic view of death. Before age 5, children see death as temporary, like sleeping. Possibility of waking up (like Sleeping Beauty) Misunderstanding may have emotional consequences Kids may blame themselves, their behavior By age 5 children have begun to accept death as universal and final.

Death in Adolescence Adolescents views of death are also unrealistic & often highly romantic. Personal Fable (beliefs that they are unique & special) lead to a sense of invulnerability The most frequent cause of adolescent death is accidents (usually motor vehicle) Other frequent causes include homicide, suicide, cancer, AIDS Adolescents tend to feel invulnerable so confronting a terminal illness can be difficult; they often feel angry and "cheated". Death in Young Adulthood Death is young adulthood is particularly difficult because it is the time in life when people feel most ready to begin their own lives. Young adults facing death have several concerns. Developing intimate relationships and one's sexuality. Future planning (e.g., marry or not? have children?). Like adolescents, young adults are outraged at impending death and may direct anger toward their care providers. Death in Middle Adulthood Life-threatening disease is the most common cause of death in middle-aged adults. These adults are more aware and accepting of death but also have a lot of fears (more than any other time in lifespan). Most frequent causes are heart attack or stoke - both of which are sudden Death in Late Adulthood The prevalence of death and losses around older adults makes them less anxious about dying than at any other time of life. Suicide rate increases with age for men. Caucasian men over age 85 have the highest rate of suicide. A major issue for seniors with a terminal disease is whether their lives still have value and how much of a burden they are.

Most people know when they are dying; it is caretakers who tend to have more difficulties communicating about it. Research shows that physicians usually prefer to avoid telling dying patients that their illnesses are terminal Not all people want to know the truth about their condition or know theyre dying Individuals react to death differently, in part due to personality factors A high general anxiety level has been linked to a higher concern about death Cultural differences The Stages of Death: Understanding the Process of Dying No researcher has had a greater influence on our understanding of death and dying than Elizabeth Kubler-Ross

Her stage theory of death and dying was created from extensive interviews with people that were dying and those that cared for them A.Elisabeth Kubler-Ross identified five stages of coping with death.

Kubler-Ross 5 stages of death 1) Denial Denial is resisting the whole idea of death ("No I'm not or she's not"). Denial is a form of defense mechanism to allow one to absorb difficult information at one's own pace

2) Anger "Why me/her?" "Why not you?" In this stage people may be very difficult to be around. 3) Bargaining At this stage individuals are trying to negotiate their way out of the death. Typically, people try to "make deals" with God. Sometimes the bargain creates an event or date until which the person can hold on to (such as a grandchild's wedding, or a 100th birthday).

(Kubler-Ross 5 stages of death, continued) 4) Depression The individual at this stage is overwhelmed by a deep sense of loss. Reactive depression is a type of depression based on what has already occurred, such as loss of dignity, health, etc. Preparatory depression is the anticipation of future losses, such as the loss of a relationship.

(Kubler-Ross 5 stages of death, continued) 5) Acceptance People are fully aware that death is impending In this stage individuals near death make peace with death and may want to be left alone. Persons in this stage are often unemotional and uncommunicative.

Criticisms of Kubler-Ross's model The theory does not apply to people who are not sure they are going to die - when the prognosis is ambiguous. The stages are not universal, nor do people go through them in progression. Anxiety, especially about pain, is omitted in her stages and this is an important concern for

cancer patients. There are still a lot of differences in peoples' reactions to death related to family, culture, finances, personality, etc.

Grief and Bereavement ~ After the death of a loved one, a painful period of adjustment follows, involving bereavement and grief BEREAVEMENT is the acknowledgment of the objective fact that one has experienced a death. GRIEF is the emotional response to that loss

There are some general stages people in Western societies go through in adjusting to loss. The first stage typically entails shock, numbness, disbelief, or outright denial. Can be beneficial allows a person to function in coping with death (funeral, etc.) without being overwhelmed. In the second stage, people begin to confront the death and fully realize the extent of their loss. They fully experience their grief and yearn for the individual. Eventually the person moves through the pain and depression to a realistic review of the relationship and start to let go.

In the final stage, people reach an accommodation stage where they pick up the pieces of their lives and move on. Ultimately, most people are able to live new lives, independently from the person who has died Form new relationships Become more self reliant and appreciate of life Not everyone passes through the stages of grief in the the same order or in the exact same way Personality differences Relationship with the deceased Opportunities available for continuing their lives The Dying Persons Bill of Rights (Adapted from Barbus, 1995) I have the right to be treated as a living human being until I die. I have the right to maintain a sense of hopefulness however changing its focus may be. I have the right to participate in decisions concerning my care. I have the right to expect continuing medical and nursing attention even though cure goals must be changed to comfort goals. I have the right not to die alone. I have the right to be free of pain.

I have the right to have my questions answered honestly. I have the right not to be deceived. I have the right to have help from and for my family in accepting my death. I have the right to die in peace and dignity.

I have the right to retain my individuality and not be judged for my decisions which may be contrary to beliefs of others. I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.

Palliative Care & Hospice Care Traditional Health Care Model Curative The primary goal is cure The object of analysis is the disease process Symptoms are treated primarily as clues to diagnosis Primary value is placed on measurable data Tends to devalue information that is subjective, immeasurable, or unverifiable Therapy is medically indicated if it eradicates or slows the progression of disease

Symptoms at the End of Life: Pain Trouble breathing Nausea and vomiting Sleeplessness Confusion Depression Loss of appetite Constipation Bedsores Incontinence

Did you know that hospice care and palliative care are not the same thing? While it's true that hospice is one type of palliative care, hospice care and traditional palliative care bear minimal similarities. The key differences are important to recognize.

Palliative Care Comprehensive care for patients whose diseases are not responsive to curative treatment Care is provided by an interdisciplinary team of physicians, nurses, social workers, chaplains and other health care professionals Palliative Care Teams practice in hospitals, nursing homes and in the outpatient setting. History of Palliative Care Dame Cecily Saunders was the founder of St Christophers Hospice which opened in London in 1967 Connecticut Hospice- first Modern Hospice in USA in 1974 Medicare Hospice Benefit introduced in 1983 General Principles Patient and family as unit of care Attention to whole person Interdisciplinary team approach Education and support of patient and family Extends across illnesses and settings Bereavement Support National Consensus Project for Quality Palliative Care, 2004 Hospice Provides coordinated, comprehensive care for terminally ill patients and their families. Provides care at home and in medical facilities through an interdisciplinary team of healthcare professionals. Entitlement under Medicare and other health insurance programs. Domains of Palliative Care Structure and Processes of Care Physical Aspects of Care Psychological and Psychiatric Aspects of Care Social Aspects of Care Spiritual, Religious and Existential Aspects of Care Cultural Aspects of Care Care of the Imminently Dying Patient Ethical and Legal Aspects of Care Clinical Practice Guidelines for Quality Palliative Care, 2004 Structure and Processes of Care Comprehensive, interdisciplinary plan of care based on expressed values and goals of patient and family Teams have relationships with one or more community hospice programs The physical environment in which care is provided meets the needs of the patient and family to the extent possible Patients and families have access to palliative care staff 24 hours a day, seven days a week

Physical Aspects of Care Pain, other symptoms, and side-effects are managed based upon the best available evidence Breathlessness Anorexia Insomnia Fatigue/weakness Anxiety Nausea Depression Confusion Constipation The outcome of symptom management is the safe and timely reduction of the symptom to a level that is acceptable to the patient Psychological and Psychiatric Aspects of Care The interdisciplinary team includes professionals with training and skills in the psychological consequences and psychiatric co-morbidities of serious illness Appropriate pharmacologic and non-pharmacologic therapies are initiated for depression, anxiety, insomnia or other symptoms Bereavement support is available for up to 13 months Social Aspects of Care Comprehensive interdisciplinary assessment identifies the social needs for patients and their families Referrals to appropriate services are made that meet identified social needs: Access to care Transportation Rehabilitation Medications Counseling Community resources Equipment Advocacy Help in the home, school or work Spiritual, Religious and Existential Aspects of Care Professionals with expertise in assessing and responding to spiritual and existential issues are included on the interdisciplinary team Regular ongoing exploration of spiritual and existential concerns occurs as appropriate Contacts with spiritual/religious communities, groups, or individuals as desired by the patient and/or family are facilitated Religious or spiritual rituals as desired by the patient and/or family are supported Cultural Aspects of Care The Palliative Care team assesses and attempts to meet the culture-specific concerns of patients and their families Communications are respectful of cultural preferences regarding disclosure, truth-telling and decision-making The program attempts to respect and accommodate the range of language, dietary, and ritual practices of patients and their families

Care of the patient who is imminently dying Signs and symptoms of impending death are recognized and communicated and appropriate care is provided to the patient and family based on their preferences End-of-life concerns, hopes, fears and expectations are addressed openly and honestly in the context of social and cultural customs Ethical and Legal Aspects of Care Care is consistent with the professional code of ethics for all involved disciplines The team aims to prevent, identify and resolve ethical dilemmas related to specific interventions withholding or withdrawing treatments instituting DNR orders use of sedation Team members are knowledgeable about legal and regulatory aspects of palliative care Medicare Hospice vs. Home Care Medicare Hospice vs. Home Care HOSPICE CARE What is Hospice? {From the word Hospes Originally, referred to shelter or way station for weary travelers. Today, means a concept of care that provides comfort and quality of life to clients, and their significant others, who are facing lifes final journey associated with terminal illness.

The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders, who founded the first modern hospiceSt. Christophers Hospicein a residential suburb of London. Florence Wald, pioneer in the field of hospice care in the U.S A type of care and a philosophy of care which focuses on palliation of terminally ill patients symptoms. Physical Emotional Spiritual Social The primary goals of hospice care are to: Provide comfort. Relieve physical, emotional, and spiritual suffering, Promote the dignity of terminally ill persons. Hospice care neither prolongs nor hastens the dying process. It a Place? Hospice care is a philosophy or approach to care rather than a place. { Care may be provided in a persons home, nursing home, hospital, or independent facility devoted to end-of-life care. What Kind of Treatment Is Provided Through Hospice Care? Hospice care is holistic: The health care team attends to practical needs, and assistance in addition to emotional and spiritual needs and fear of dying. Care is provided by an interdisciplinary team.

What Services Does Hospice Offer? For the Patient. 1.Providing care to the patient. 2. Medical care to relieve pain and other symptoms arising from a life-limiting illness. 3. Basic needs of daily living. 4. Counseling. 5. Assisting the patient with unfinished legal or financial business and in making funeral arrangements. 6. Religious care. For Caregivers/Family Members 1.Counseling services. 2.Respite care. 3. Health Education. 4.Practical assistance. 5.Assistance with cremation/burial arrangements and with funeral/memorial services. 6.Bereavement care. Principles Underlying Hospice 1.Death must be accepted. 2. The patients total care is best managed by an interdisciplinary team whose members communicate regularly with each other. 3. Pain and other symptoms of terminal illness must be managed. 4. The patient and the family should be viewed as a single unit of care. 5. Home care of the dying is necessary. 6. Bereavement care must be provided to family members. 7. Research and education should be ongoing. HISTORY OF HOSPICE CARE 11th century, around 1065= the 1st hospice care are believed to have originated when the first incurably ill were permitted into places dedicated to treatment by Crusaders. 14th century- Order of Knights Hospitaller of St.John of Jerusalem opened the 1st hospice in Rhodes 17th century- Hospices were revived in France by the Daughters of Charity of Saint Vincent de Paul. 19th Century- established also in UK where attention was drawn to the needs of the terminally ill. 1902-1905hospice care spread to other nations.( Australia, North America, Japan, China, Russia) Cecily Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of

terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care. 1965: Florence Wald, then Dean of the Yale School of Nursing, invites Saunders to become a visiting faculty member of the school for the spring term. Modern Hospice Movement In the 1950s as medical technology developed, most people died in hospitals. The medical profession increasingly saw death as a failure. Physical pain associated with terminal illness was not a target of treatment. Dame Cicely Saunders, MD, founded St. Christophers Hospice in London in the 1960s, in an effort to discover practical solutions to alleviating human suffering. She introduced hospice in the U.S. in a lecture at Yale in 1963. This contact set off a chain of events which resulted in the development of hospice care as we know it today. 1972: Kubler-Ross testifies at the first national hearings on the subject of death with dignity, which are conducted by the U.S. Senate Special Committee on Aging. 1996: Major grant-makers pour money into funding for research, program initiatives, public forums, and conferences to transform the culture of dying and improve care at the end of life. Myths of Hospice : Only for people with cancer. Only for old people. Only for dying people. Can help only when family members are able to provide care. For people who dont need a high level of care. Only for people who can accept death. Expensive. Not covered by managed care. For when there is no hope. Realities of Hospice About 80% of hospice care takes place in the home. Hospices are increasingly serving people with the end-stages of chronic diseases. Hospices serve people of all ages. Hospice focuses as much on the grieving family as on the dying patients. Alternative locations or resources may be available. Hospice is serious medicine, offering state-of-the-art palliative care. Hospices gently help people find their way at their own speed. Hospice can be far less expensive than other end-of-life care. Most people who use hospice are over 65 and entitled to the Medicare Hospice Benefit, which covers virtually all hospice services. Members of the Hospice Team 1. Primary Physician

Provides the hospice team with medical history. Oversees medical care through regular communication with the hospice team. Provides orders for medications and tests, signs death certificate, etc. Determines his or her level of involvement on a case-by-case basis with the hospice medical director. 2. Hospice Physician Provides expertise in pain and symptom control at the end of life. Works closely with the hospice team and primary physician to determine appropriate medical interventions. Makes home visits on as needed basis. May oversee the plan of care, write orders, and consult with patient and family regarding disease progression and appropriate medical interventions on a case-by-case basis. 3. Nurse Visits patient and family in the home or nursing home on regular basis. May provide on-call services. Assesses pain, symptoms, nutritional status, bowel functions, safety, and psychosocialspiritual concerns. Educates patient and family. Educates and supervises nursing assistants. Provides emotional and spiritual support to patient and family. 4. Home Health Aide Assists patient with activities of daily living. Provides a variety of other services depending on assessment of need. 5. Social Worker Attends to both practical needs and counseling needs of patient and family. Arranges for durable medical equipment, discharge planning, funeral/burial arrangements Serves as liaison with community agencies. Assist family in finding services to address financial needs and legal matters. Provides counseling. Assesses patient and family anxiety, depression, role changes, caregiver stress. Provides general grief counseling. Chaplain Provides patient and family and hospice staff with spiritual care and counseling. Volunteer Provides respite care to family members May assist with light housekeeping or grocery shopping. Helps patients stay connected with community groups and activities. Facilitates special projects. provide community education and outreach. May assist with office work.

Palliative Care vs Hospice Hospice is a Medicare benefit- other insurance plans also have Hospice benefits; it is a way of paying for a certain type of care Hospice care can be provided in the home setting or in a facility Palliative care encompasses all of hospice care, but also supports curative or life prolonging therapies; prognosis > 6mo PALLIATIVE should start at the time of diagnosis occurs simultaneously with aggressive or curative treatments, often managing symptoms that these therapies cause HOSPICE appropriate during the last 6 months of life usually cannot be given at the same as curative or aggressive treatments such as chemotherapy, radiation, blood transfusions, etc PALLIATIVE often underfunded and difficult to access in many areas. HOSPICE paid for in full by the Medicare benefit and by Medicaid (in most states). Most insurances also cover hospice services in full or with minimal co-pays. PALLIATIVE Setting { Anywhere most often done in the hospital setting. More community-based outpatient palliative care services are beginning to pop up in larger metropolitan areas but access is still limited. HOSPICE Setting { Anywhere most often provides care in a patient's home setting. That could be at their own home or that of a relative, a nursing home or assisted living facility, or retirement community. Some hospices offer inpatient services in dedicated hospice facilities. Summary The major goals of hospice and palliative care are to relieve suffering and to help patients live the remainder of their lives fully and comfortably Palliative care is provided by an interdisciplinary team of health professionals Hospice is both philosophy of care and an entitlement program that can greatly enhance the quality of care at the end of life.

PATIENT & FAMILY

Characteristics Demographic (age, sex, race, contact information) Culture (ethnic, language, nurture) Personal values, beliefs, practices, strengths Development status, education, alphabetization Disabilities 1. ILLNESS MANAGEMENT

Primary diagnosis, prognosis, tests Secondary diagnosis (for example, dementia, psychiatric diagnosis, use of drugs, trauma) Co-morbid (delirium, attacks, organs failure) Adverse episodes (collateral effects, toxicity) 2. PHYSICAL

Pain & other symptoms Conscience level, cognition Function, safety, materials: Motor (mobility, shallowness, excretion) Senses (hearing, sight, smell, taste, touch) Physiologic (breathing, circulation) Sexual Fluids, nutrition, wounds Habits (alcohol, smoking) 3. PSYCHOLOGICAL

Personality, strengths, behavior, motivation Depression, anxiety Emotions (anger, distress, hope, loneliness) Fears (abandonment, burdens, death) Control, dignity, independence Conflict, guilt, stress, assuming answers Self-image, self-esteem 4. SOCIAL

Values, cultural, beliefs, practices Relations, roles with the family, friends, community Isolation, abandonment, reconciliation Safe, comforting environment Privacy, intimacy Routines, rituals, leisure, vocations Financial resources, expenses

Legal (powers of attorney for businesses, health attention, advanced directives, last desire/testament beneficiaries) 5.SPIRITUAL

Significance, value Existential, transcendental Values, beliefs, practices, affinities Spiritual advisors, rituals Symbols, icons 6. PRACTICAL

Everyday activities (personal care, home work) Dependents, pets Access to telephone, transport Care 7. CARE AT THE END OF LIFE/DEATH MANAGEMENT

End of life (businesses ending, relationships closing, to say goodbye) Delivery of gifts (objects, money, organs, thoughts) Creation of legacy Preparation for the awaited death Anticipation changes in agony Rituals Certification Care of agony Funerals 8. LOSS, BEREAVEMENT

Loss Pain (for example, chronic acute, anticipatory) Bereavement planning Mourning