A Good Death? Changing Expectations and Plans Osher Lifelong Learning Institute John Amson Capitman, PhD. Nickerson Professor of Health Policy Central Valley Health Policy Institute California State University, Fresno

A Good Death: Preliminary Outline 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

Identifying Individual Goals (answer for self, share in small group) 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

Changing Context of Dying Epidemiological Transition--- life course change Change in nature of death Change in place of death Change in cost of death Increasing costs for health- related services ---10% are quick, 50% follow extended disability, 40% follow repeated episodes of acute illness death---80% die in hospitals or nursing homes. More affluent less likely to die at home ---cost of death has grown at same rate as all health care BUT 40% of all Medicare costs for last 30 days

Death and Life Review 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 Source: "Staring at the Sun: Overcoming the Terror of Death". Irv Yalom 2010

Death and Life Review (D-I-Y Obituary) 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 ... The purpose of this obituary, besides that of evaluating your achievements and failures, is to flush out whether a more acute awareness of your own mortality would lead you to want to make changes in your life, in case you might wish to make them now, rather than being filled with regrets on your deathbed.

Stages in Grief (Kubler-Ross, 1969) 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

“Recipes” for a Good Death THE FOUR TASKS OF LIVING AND DYING (A Buddhist Perspective) Understanding and transforming suffering. Making a connection, healing relationships and letting go. Preparing spiritually for death. Finding meaning in life.

“Recipes” for a Good Death Task #1: Ask For Forgiveness Task #2: Offer Forgiveness Task #3: Offer Heartfelt Thanks Task #4: Offer Sentiments of Love Task #5: Say Goodbye

““Recipes” for a Good Death A medical consensus 1 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. Smith R. A good death. BMJ 320:129-130. 15 January 2000. 8 November 2006.

“Recipes” for a Good Death A medical consensus 2 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. Smith R. A good death. BMJ 320:129-130. 15 January 2000. 8 November 2006.