John Amson Capitman, PhD. Nickerson Professor of Health Policy Central Valley Health Policy Institute California State University, Fresno Day 1: Overview and Individual Goals Changing Context of Death and Disability Death and Life Review “Recipes” for a Good Death Day 2: Anticipating Long-term Care Needs Caring for Caregivers Living Will: the 5 wishes Long-term Care Insurance How often do I think about death, dying, disability? What feelings come up? What questions do I have about death, dying, disability? What do I want to learn from this program? How have I been learning about death, dying and disability? (Who? What sources?) What are the main issues I have been examining? What do I feel I have learned enough about and don’t want to explore anymore Epidemiological Transition--life course change Change in nature of death Change in place of death Change in cost of death Increasing costs for healthrelated services Fear of death: common, overlooked, rarely addressed Fear of death develops over life course Fear of death is most often about: ◦ Fear of missed opportunities ◦ Fear for fate of loved ones ◦ Fear of judgment/spiritual doubts Making the most of life as principal feature of a good death Outside observers would probably say that my main achievements have been ... For myself, what I am most pleased with and proud of in my life, are ... One of the most important lessons that I have learnt in my lifetime is that ... During my life I have used my ... [list three positive personal characteristics, for example: imagination, sense of humour and intelligence] through my ... [list three activities, for example: writing, running groups and parenting] with the underlying vision, I now realise, of helping work towards a world in which, one day, ... [describe your long-term Utopia, for example: 'people are kind and sensitive to each other, nature is at ease and magic is alive']. The people I have felt closest to in my life have been ... One generalisation I could make about the quality of my relationships with others is that ... If I regret anything, it is that ... If I had known how short a time I had left to live, I would probably have ... Kubler-Ross famously said, all grief goes through 5 stages Denial Anger Bargaining Depression Acceptance Recent research finds: (1) model is culture specific, does not apply for many, (2) even among US/Europe, pattern not upheld THE FOUR TASKS OF LIVING AND DYING (A Buddhist Perspective) 1) Understanding and transforming suffering. 2) Making a connection, healing relationships and letting go. 3) Preparing spiritually for death. 4) Finding meaning in life. Task Task Task Task Task #1: #2: #3: #4: #5: Ask For Forgiveness Offer Forgiveness Offer Heartfelt Thanks Offer Sentiments of Love Say Goodbye 1. 2. 3. 4. 5. 6. To know when death is coming, and to understand what can be expected. To be able to retain control of what happens. To be afforded dignity and privacy. To have control over pain relief and other symptom control. To have choice and control over where death occurs (at home or elsewhere). To have access to information and expertise of whatever kind is necessary. 7. 8. 9. 10. 11. 12. To have access to any spiritual or emotional support required. To have access to hospice care in any location, not only in hospital. To have control over who is present and who shares the end. To be able to issue advance directives which ensure wishes are respected. To have time to say goodbye, and control over other aspects of timing. To be able to leave when it is time to go, and not to have life prolonged pointlessly.