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Death and Dying: A Family Affair


Death and Dying: A Family Affair Lecture 12/6/04 Lifespan Understanding of Death Newborn to 3 years: Infants do not understand the concept of death. – PowerPoint PPT presentation

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Title: Death and Dying: A Family Affair

Death and Dying A Family Affair
  • Lecture 12/6/04

Lifespan Understanding of Death
  • Newborn to 3 years
  • Infants do not understand the concept of death.
  • As they develop attachment to a caregiver, they
    can experience loss or separation and
    accompanying anxiety.

Lifespan Understanding of Death II
  • Children 3 5 years
  • Have little or no idea of what death really
  • Confuse death with sleep.
  • Rarely get upset by being told that a person has
  • Believe the dead can be brought back to life by
    magic or by giving them food or medical
  • Often believe that only people who want to die,
    or who are bad or careless, actually die.
  • May blame themselves for the death of someone
    they knew well, illogically reasoning that the
    event may have happened because they disobeyed
    the person who died.

Lifespan Understanding of Death III
  • Middle Late childhood
  • Children 6 9 believe that death exists but only
    happens to some people.
  • Children 9 years and older recognize that death
    is final universal.

Lifespan Understanding of Death IV
  • Adolescence
  • Death regarded as something very remote.
  • The subject of death may be avoided, glossed over
    or kidded about.
  • Some adolescents do show concern for death,
    trying to understand its meaning confront their
    own death.
  • Notions of death become more abstract.
  • Develop religious philosophical views about the
    nature of death and whether there is life after

Lifespan Understanding of Death V
  • Adulthood
  • An increased consciousness about death
    accompanies individuals awareness that they are
    aging, which usually intensifies in middle
  • Middle-aged adults fear death more than young
    adults or older adults do.
  • Older adults think about death more than do young
    middle-aged adults.
  • Older adults have more direct experience with
    death as their friends relatives become ill
  • Older adults examine the meaning of life and
    death more frequently than younger adults.
  • Death may be less emotionally painful for older

Other Types of Death
  • Social death Failure to recognize a person as
    being among the living.
  • A woman who enters a nursing home, and is never
    acknowledged again by members of her family.
  • Nurses who do not respond as often to the call
    lights of the terminally ill as those who may
  • Psychological death A state where self-awareness
    is absent (confusion, disorientation) or
    individuals no longer consider themselves
  • A patient with Alzheimer's disease.
  • A person may become severely depressed which may
    lead to a lack of interest in living

Suicide Statistics and Death
  • Persons over 65 have the highest completed
    suicide rate of any group. Within this age group
    persons 80-84 have the highest rate.
  • Most aged suicides occur in the midst of their
    1st depressive episode.
  • Cohort and gender issues younger older have a
    higher rate than did their grandparents at the
    same age. White males.
  • Suicide risk factors male, increasing age,
    white, unmarried, psychiatric illness history
    of suicide attempts.

Advance Care Planning Definitions
  • ACP refers to means by which preferences
    regarding life-sustaining treatments are
    communicated so that medical treatment decisions
    can be made prior to medical crisis.
  • Advance directives are written documents
    typically executed by a competent individual in
    the presence of witnesses to communicate his/her
    preferences regarding life-sustaining treatments.
  • Living wills stipulate what treatments a person
    would like to withhold, or what measures he or
    she wants.
  • Health care proxies are used to appoint an agent
    who will have authority to make medical treatment
    decisions for a person.

Advance Care Planning Findings
  • Intra-individual life-sustaining treatment
    preferences are stable for up to two years.
  • ACP may reduce stress among patients, caregivers,
    and other family members.
  • Regarding agreement studies between patients and
    proxy decision makers
  • proxies have difficulty making substituted
  • agreement is poor, even when guided by formal
  • agreement is highest for the most extreme
    (coma-no chance) and least extreme (current
    health) scenarios.

Family Perspectives of a Good Death
  • Health care professionals work to ensure
  • Pt has physical comfort and emotional support.
  • Shared decision making.
  • Pt is treated with respect.
  • Information and emotional support is provided to
    family members.
  • Care is coordinated across settings.

Place of Death Family Perspectives
  • In Tenos national probability sample
  • 68.9 of decedents died in an institutional
    setting either a hospital or nursing home.
  • Of the 31.1 who died at home
  • 36.1 died without any nursing services
  • 12.4 had home nursing services
  • 51.5 had home hospice services

Place of Death Family Perspectives on Quality
of Care
  • In Tenos national probability sample
  • unmet needs for dyspnea or shared decision
    making with a physician did not differ by
  • in comparison with hospice, pts in nursing homes
    or at home with home health services reported
    unmet needs for pain and being treated with
  • Staff and family educational needs were higher
    in nursing homes and hospitals.

Family Caregiving and the Stress Process
  • Negative outcomes
  • Regardless of life-limiting illness, burden,
    depression, low life satisfaction and poor CG
    health are worse among CGs of pts with more care
  • Feel on duty almost 24 hours/day.
  • Positive outcomes
  • Passing on a tradition of care.
  • Satisfaction.
  • Sense of personal growth, meaning, and purpose.

Family Caregiving and Religiousness / Spirituality
  • Persons who tend to turn to religion as a source
    of coping with distressing life events are
  • Elderly
  • Poorer
  • Less well educated
  • African American
  • Widowed
  • Female
  • More religious to begin with
  • Religiousness mediates the relationship between
    race and perceived caregiver rewards and well

Family Caregiving and Bereavement
  • Among spousal CGs, relief is a common result of
    bereavement when
  • The CR had a severe illness
  • the relationship was characterized as high
  • the role of caregiver was perceived as a strain
  • Family tension and difficulty in providing care
    predicts difficulty in coping with bereavement.
  • Bereavement reactions differ by cultural context,
    with whites perceiving more relief and AAs
    perceiving greater loss (Owen, Goode, Haley,

Future Research Needs
  • Need to further study the relationship between
    CULTURE, caregiving, stress process, and
    religious and spiritual coping.
  • Policy issues, including the Medicare hospice
    benefit and palliative care needs.
  • More intervention studies across treatment
  • Caregiving context prior to bereavement and
    consequent adjustment to bereavement.
  • Need for mixed method studies of decision making,
    including ACP and placement prior to death.