FINDING the HEART of Advanced Care Planning & End-of-Life Discussions Martha Kay Nelson

Getting the Most at Any Age 2

Aging in Alameda County ABAG Projects 131% increase of persons over 60 years old by 2030 – 1 in 4 Alameda County residents will be “elderly” Elderly prefer to age in place: – 38% live with some form of disability – 27% live in low-income households – 15% live in households with no car – 14% are actively engaged in the labor force 3

A Century of Change in the U.S.

Consider the facts: 60% of people say that making sure their family is not burdened by tough decisions is “extremely important” 56% have not communicated their end-of-life wishes 70% of people say they prefer to die at home 70% die in a hospital, nursing home, or long-term-care facility 80% of people say that if seriously ill, they would want to talk to their doctor about end-of-life care 7% report having had an end-of-life conversation with their doctor 82% of people say it’s important to put their wishes in writing 23% have actually done it Source: Survey of Californians by the California HealthCare Foundation (2012) One conversation can make all the difference.

CA Advance Health Care Directive PART 1: Chose A Health Care Agent PART 2: Make Your Own Health Choices PART 3: Sign The Form Easy, right?

Advanced Directives: not always so simple 7 What about when the talking don’t come easy…?

It seems rather incongruous that in a society of super sophisticated communication, we often suffer from a shortage of listeners. - Erma Bombeck 8

In facing advanced illness or nearing end-of-life, what are some of the things you would wish for your clients? Your loved ones? Yourself?

At our core, most humans are more alike than they are different. At the same time, the uniqueness we bring to life comes from our particular cultural, ethnic and socio-economic experiences.

The human mind can take in over 11 million pieces of information at one time. Our awareness captures 40 of them…at best. Then think of the iceberg… 13

You don’t need to have the answers. You don’t need to be a cultural expert. You just need to be curious. People want to be seen and heard. Period. Aren’t you just a little bit curious about what lies beneath the water? 14

Ancestry Appearance Cuisine Dressing Style Heritage History Language Dialect Religion Symbols Traditions Other cultural factors 15

WHAT ABOUT THIS PLACE? FREMONT: Fremont is the fourth largest city in the San Francisco Bay Area, combined with its neighboring cities of Newark, and Union City. The region has a combined population of 313,000 and covers 132 square miles. Superimposed on the growing number of elders in the community has been a major demographic shift in Fremont’s population. In 1980, Fremont’s population was predominantly Caucasian, 76%, and in 2008, no ethnic group now constitutes a majority. Asians, which include Chinese, Taiwanese and East Indians & others now make up 50% of Fremont’s residents. 47% of the population is foreign born & 57% speaks a language other than English in their own homes. Increase of diverse cultures presents many opportunities for growth & learning but also challenges in delivery of culturally appropriate services.

More Freebird, I mean, Fremont: (50.6%) Asian, consisting of 18.1% Indian, 17.8% Chinese, 6.7% Filipino, 2.5% Vietnamese, 1.8% Korean, 1.0% Pakistani, 0.8% Japanese, 0.6% BurmeseAsianIndianChineseFilipinoVietnameseKoreanPakistaniJapaneseBurmese (32.8%) White (The town is home to the largest population of Afghan Americans in the U.S. Non-Hispanic Whites were 26.5% of the population in 2010, down from 85.4% in 1970)White Afghan AmericansNon-Hispanic Whites (14.8%) Hispanic or Latino of any race. (consisting of 11.0% Mexican, 0.6% Puerto Rican, 0.5% Salvadoran)HispanicLatino MexicanPuerto RicanSalvadoran (6.4%) from other racesother races (5.9%) from two or more races (3.3%) African AmericanAfrican American (0.5%) Pacific IslanderPacific Islander (0.5%) Native AmericanNative American

Connecting the Dots: you all do it everyday 18 Elders Housing Resources TransportationNourishment Health and Well-being

Advanced Planning connects the dots between: 19 Elders Healthcare Wishes Dignity

Advanced Planning at heart means having a conversation about what matters most: 20 DignityConnection Peace Comfort

Health Care Choices: Personal Choice Personal Voice 21

A person’s right to make healthcare decisions, including: Access to information about their health. Freedom to request help from others in making healthcare decisions Freedom to choose an agent to act on their behalf should they become unable to make decisions on their own. 22

A person’s right to communicate EOL wishes, including: Being heard and considerations made concerning the way they want to live. Communicating wishes prior to the onset of a terminal or life- threatening illness. Naming an agent to speak for them. 23

What symptoms bother you the most? What is an acceptable level of pain for you? What is your mobility like these days? 24

What concerns you most about what is happening to you now? What is it about your illness that has been the most frightening for you? Do you worry about a particular situation that would completely overwhelm you? Do you worry about becoming too dependent on others? 25

Do you worry that some particular situation will be overwhelming for the people whom you love and rely upon? Is there someone in particular you are worried about burdening? What is your relationship like with them at this time? 26

What are the things in your life that have been most important to you? What do you hope for now? Has faith or spirituality been important to you in the past? Is religion or spirituality helpful to you now? 27

How are your friends & family doing with all this? Who are the important people in your life? Who do you rely on? Is there someone you trust that you can talk with or confide in? 28

Do you feel you still have choices about how you spend your days? Is your treatment plan in your control? Do you have control of your symptoms? Is there anything you would like to change in the way we work together? 29

Courage is being scared to death but saddling up anyway. - John Wayne 30