Death and Dying: A Family Affair

1. Death and Dying: A Family Affair Lecture 12/6/04

2. 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.

3. Lifespan Understanding of Death II Children 3 –5 years: • Have little or no idea of what death really means. • Confuse death with sleep. • Rarely get upset by being told that a person has died. • Believe the dead can be brought back to life by magic or by giving them food or medical treatment. • 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.

4. 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.

5. 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 death.

6. Lifespan Understanding of Death V Adulthood: • An increased consciousness about death accompanies individuals’ awareness that they are aging, which usually intensifies in middle adulthood. • 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 & die. • Older adults examine the meaning of life and death more frequently than younger adults. • Death may be less emotionally painful for older adults.

7. 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 recover. • Psychological death: A state where self-awareness is absent (confusion, disorientation) or individuals no longer consider themselves “living”. • A patient with Alzheimer's disease. • A person may become severely depressed which may lead to a lack of interest in living & experiencing.

8. 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.

9. 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.

10. 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 judgments. • agreement is poor, even when guided by formal ACPs. • agreement is highest for the most extreme (coma-no chance) and least extreme (current health) scenarios.

11. 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.

12. Place of Death: Family Perspectives • In Teno’s 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

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

14. 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 needs. • Feel “on duty” almost 24 hours/day. • Positive outcomes: • Passing on a “tradition of care”. • Satisfaction. • Sense of personal growth, meaning, and purpose.

15. 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 being.

16. 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 stress • 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, 2001).

17. 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 settings. • 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.