1. CROSS-CULTURAL ENCOUNTERS IN END-OF-LIFE CARE James Hallenbeck, MD VA Hospice Care Center

2. Objectives Gains insight into one’s own culture and the culture of biomedicine Describe challenges in working across culture relative to death and dying Describe the explanatory model Be able to demonstrate how to inquire into death related practices

3. What is Culture? More than Ethnicity –Gender, Generation, Geography, Religion, Family Role, Disability… More than inherited beliefs and practices Culture is a dynamic process wherein people interact with each other and thereby actively create an ever changing world experience

4. Why is Culture Important in End- of- Life Care? Culture makes human what would otherwise be mere biology –Especially important in life-transitions Dying is a major life transition

5. Questions about Dying and Death How do people communicate about death and dying? What preparation is made for death? How are symptoms such as pain understood, expressed and addressed? Food, feeding considerations?

6. Questions about Dying and Death Desired location for dying Spiritual/religious needs –Before death –At time of death –Following death Care of the body Grief practices Attitudes toward autopsy, organ donation Funeral practices

7. Challenges Pluralism Language Communication - misunderstandings Differing values, meaning History Social, environmental forces Imposed relationships “Culture hides much more than it reveals, and strangely enough what it hides, it hides most effectively from its own participants.” Edward Hall

8. Tensions in the Culture of Biomedicine Individualism –Autonomy- key principle –Disease in the individual body –Patient as consumer Egalitarianism –Health care as a right Mechanistic care model –Reductionist approach –Historical paternalism –Bureaucratic organization Capitalism –Health care as commodity Lacking in modern biomedicine Focus on suffering as object of medicine Inclusion of “life-force” concept in model Understanding illness as something transcending the individual

9. Changes in How We Die Most deaths now in institutions –Families less able to care for dying patients Most deaths due to chronic illness Dying usually takes a long time Dying is expensive Many options available –Treatments, care systems, where to die Many now view dying itself as a choice

10. Top 5 Causes of Death 1900

11. Top 5 Causes of Death 1994

12. Where Do We Die

13. Cultural Implications of Changes in How We Die Dying now less of an event than a life stage Cultural gaps in how we deal with dying –Institutionally – A health care system built for the ’50’s – cure in the hospital, rather than care for the chronically ill and dying –Personally – Lack of rituals, goals for life stage How we die – driven by social/economic forces –1/3 of Americans impoverished through the process of dying…

14. Explanatory Model Questions What –Do you call the problem? –Do you think the sickness does? –Do you think the natural course of the illness is? –Is it you hope for/fear? Why –Do you believe this problem occurred? Pearl: Most things that don’t make sense from the outside DO make sense if understood from the inside.

15. What, Why, How, Who continued... How –Do you think the illness should be treated? Who –Should one turn to for help? –Should be involved in care and decision making?

16. Discussing Death Related Practices Statement of respect/desire to learn about the other’s culture –You are not discussing the death of the dying patient What is important- –For a dying person to do? –For family/caregivers? Are there important things that we should know NOT to do? –At the time of death –Following death

17. Discussing Death Related Practices Special concerns or fears that we should know about? How could we be most helpful to the patient and family? –In the dying process, at the moment of death, after death? Reaffirm intent to help – Give permission to tell us of mistakes

18. Summary Culture affects all aspects of care at the end- of-life The culture of biomedicine is inadequate in dealing with challenges at the end-of-life We are all engaged in a cultural process of creating new ways of dying in response to changes in how we die Specific skills can enhance one’s ability to work across cultures and thereby achieve better outcomes for patients, families and clinicians