300 Respondents. Nebraska End of Life Survey. Demographics. Marital Status. Age of Respondents. Employment Status. Level of Education.

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1 Nebraska End of Life Survey Demographics 300 Respondents Age of Respondents Marital Status 75 & up 65 to to to to % 20% 2 Widowed Divorced Separated Living together 1 0% 25 to 34 9% Married 65% Under 25 Single 1 0% 5% 15% 20% 25% 0% 20% 40% 60% 80% Level of Education Employment Status Unemployed and looking for work Post-graduate/profes degree College graduate Some college/technical High school/equivalent 19% 20% 29% 29% Other, such as homemaker Retired and not working Employed or selfemployed part-time 1 26% Less than high school Employed or selfemployed full-time 5 0% 5% 15% 20% 25% 30% 0% 20% 30% 40% 50% 60%

2 Income Race/Ethnicity $75,000 or more $60,000 to under $75,000 $50,000 to under $60,000 $40,000 to under $50, Hawaiian/Pacif Islander Nat.American/Alaskan Hispanic 0% $30,000 to under $40,000 1 Asian 0% $20,000 to under $30,000 $10,000 to under $20, % Black/Afr American Less than $10,000 7% White/Caucasian 96% 0% 5% 15% 20% 25% 0% 20% 30% 40% 50% 60% 70% 80% 90% 100% Are you a member of AARP? No 69% What We Value Yes 3 0% 20% 30% 40% 50% 60% 70% How much do you agree with the following statements? How much do you agree with the following statements? Dying is an important part of life 6% 3 59% Would want to know when I'll die 5% 2 68% Special value in getting old 5% 46% 39% Caring for dying is rewarding 9% Don't know how people make peace 6% 3 59% Strongly Disagree Somewhat Disagree Somewhat agree Strongly Agree Strongly Disagree Somewhat Disagree Somewhat agree Strongly Agree

3 How comfortable are you with: Thinking about life after death 7% 40% 50% How We Behave Writing my own will 5% 30% 6 Talking about death 49% 40% How likely are you to: How likely are you to: Preplan my own funeral 6% 20% 39% 35% Watch television programs or movies on death and dying 26% 4 28% Attend funerals or memorial services 4 55% Read books, newspaper articles or other information on death and dying 5% 17% 4 37% How likely are you to: With whom have you talked about your wishes for end-of-life care? Visit or telephone a friend or relative who has recently lost a loved one in order to see how they are doing 8% 47% 4 Spouse/partner Family 6 59% Friends 2 Speak freely to loved ones about death and dying 15% 49% 3 Lawyer Physician 5% 19% Clergy No one 18%

4 Who would you want to initiate a conversation with you regarding end-of-life issues? Who would you trust to provide information on end-of-life issues? Spouse/partner 68% Primary Physician Local Hospital 28% 7 Family 7 Local Hospice 3 Friends Lawyer 26% 2 Lawyer Clergy American Cancer Society % Physician 35% AARP Clergy No one 3 No One 5% Which of the following Pre-Plans have you heard of or completed? Which of the following Advance Directives have you heard of or completed? Organs /tissue donation 36% 38% 36% Living Will 0% 0% Funeral/Burial Pre- Plans 25% 2 2 Last Will/ Testament 1 1 6% Health Care Power of Attorney 0% 0% Have heard about and completed Have heard about but not completed Have not heard about Have heard about and completed Have heard about but not completed Have not heard about Health Care Power of Attorney : Living Will : Have heard about and completed 30% Have heard about and completed 30% Have heard about but not completed 60% Have heard about but not completed 68% Have not heard about Have not heard about

5 How afraid are you of: What We Fear Dying suddenly 26% 4 2 8% Dying from a longterm illness 6% 25% 50% 19% How afraid are you of: How afraid are you of dying painfully: Dying in an institution such as a nursing home or hospital 9% 29% 39% 2 Very Somewhat 35% 46% Dying alone 16% 35% 36% 1 Not Very 16% Not at All Which of the following health problems would be worse than death? Living with great pain Total physical dependency/coma Unable to communicate my wishes None are worse than death 7% 66% 7 8 How Concerned are you that: I will be a burden to my family or friends My (or my spouse/partner's) money won't last My family's money won't last 6% 2 36% 36% % 27% 1 25% 36% 27%

6 How much do you agree with the following statements? Our Concerns About Pain I am afraid I will become addicted to the pain medicines over time 38% 28% 25% 9% I am afraid I would be given too much pain medicine 36% 36% 20% 8% I am afraid my doctor may not believe I am in pain or may not treat my pain 26% 27% 3 1 Strongly Disagree Somewhat Disagree Somewhat agree Strongly Agree How much do you agree with the following statements? I would only take pain medicines when the pain is severe 7% 15% 4 3 What We Hope For I would take the lowest amount of medicine possible to save larger doses for later when the pain is worse 16% 4 3 Strongly Disagree Somewhat Disagree Somewhat agree Strongly Agree Not being a burden to loved ones 15% 8 Being able to stay in 29% 67% your home Family / friends visiting 19% 78% you Understanding your treatment options Being off machines that extend life such as life support Knowing medicine 16% was available to you Honest answers from your doctor 89% 2 7 5% 95%

7 Being free from pain 29% 69% Comfort from religious / spiritual services or persons 8% 25% 6 Having health care professionals visit you at your home 1 40% 47% Being at peace 1 85% spiritually Being physically comfortable 26% 7 Knowing how to say goodbye 2 7 Having things settled with the family 1 86% Giving to others in time, gifts, or wisdom Reviewing your life history with your family 7% 30% 6 5% 2 35% 36% Having a sense of your own worth 8% 28% 6 Fulfilling personal goals/pleasures 16% 3 48% Getting your finances in order Being able to complete your will 25% 7 25% 7 What Type of Support We Want and By Whom Planning your own funeral 17% 40% 39%

8 What type of support would you want if you were dying? What type of support would you want if you were dying? Faith Com. 20% 2 47% 3 3 8% Work Assoc. 1 7% Health Prov. 18% 3 47% 5 5% Com. Orgs. 9% 1 8% Friends/Neigh. 65% % 48% Faith Com. Work Assoc. Health Prov. Com. Orgs. Friends/Neigh. 36% 20% 16% 3 9% 49% 16% 16% 18% 5% 2 19% Other Family 60% 50% % Other Family 55% 46% 47% 66% Children 8 78% 76% 70% 75% Children 78% 66% 68% 65% Spouse/Partner 76% 76% 7 69% 75% Spouse/Partner 77% Do Fun Things Know what I want Encourage me Understand Know illness Listen Transport Chores Care for family What type of support would you want if were dying? (Average of types of support) Understand, 4 Encourage me, 47% Know illness, 45% Listen, 4 Transport, 4 Chores, 35% Who would you want to provide you support if you were dying? (Average of who provides support) Work Assoc 9% Com. Orgs 5% Health Prov 49% Faith Com 36% Spouse/Partner, 77% Spouse/Partner Children Other Family Friends/Neigh. Health Prov. Com. Orgs. Work Assoc. Faith Com. Care for family, 38% Do Fun Things, 40% Know what I want, 36% Listen Transport Chores Do Fun Things Know what I want Care for family Encourage me Understand Know illness Friends/Neigh 4 Other Family 55% Children, 78% Hospice Knowledge Hospice Knowledge Know person who used 75% I have never heard of hospice services 5% I used hospice I am/was volunteer 9% I have heard a little about hospice services 4 Health care prof. Through the media 35% 37% I have heard a lot about hospice services 5 38% I heard from others 0% 20% 40% 60% 80% 0% 20% 40% 60%

9 Does Medicare pay for hospice services? Heard a lot about hospice services (N=146) If you were dying, would you want hospice support? Heard a lot about hospice services (N=146) Not Sure Yes No Not Sure Yes 5 37% 8% 15% 8 No Where would you want to receive hospice support? (N=146, Heard a lot about hospice) Would you be interested to hear more about hospice services? In a hospice residence In a hospital In a nursing home 35% 19% % 39% 15% 1 Not at All Not Very Somewhat Very Not Sure In a residential facility 30% In my own home 9 Religious/Spiritual Spirituality Very Religious 3 Somewhat 55% Not Very 9% Not at all 0% 20% 40% 60%

10 How often do you attend religious or spiritual services? How often do you find strength in your religion or spirituality? Never Rarely 7% 1 Never Once a month or less A few times a month 6% 9% 1 Occasionally 29% A few times a week 26% Regularly 5 One or more times a day 48% 0% 20% 40% 60% 0% 20% 40% 60% In general, how would you rate your own health right now? Health Excellent Very Good 25% 36% Good 2 Fair 1 Poor 0% 20% 40% Number of times in last 12 months received services at emergency room. Number of times in last 12 months have seen a doctor? 3 or more 2 Emergency Services Stay in hospital 85% 8% 5% 0 8 Seen a doctor 15% 30% 16% 39% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% zero one two three or more

11 Do you or any member of your household have a serious chronic illness? Are you currently covered by any health care insurance or program? Yes 9 No 80% Yes 20% 0% 20% 40% 60% 80% No 7% 0% 20% 40% 60% 80% 100% In the last 12 months, about how much did you spend each month out of your own pocket for doctor visits & prescriptions? $500 or more $200 - $500 $100 - $200 $50 - $100 $10 - $50 >10 9% % % 20% Visit doctor Prescriptions 0% 20% 40% 60% 80%