OCTOBER 2019 Help Wanted: Californians’ Views and Experiences of Serious Illness and End-of-Life Care Help Wanted Introduction Californians’ Views and Experiences of Serious Illness and End-of-Life Care Most people will experience serious illness at some point in their lives — as a patient, a caregiver, a family member, or a CONTENTS friend. In 2019, the California Health Care Foundation commissioned a statewide survey to better understand the type of medical care and services Californians would prefer to receive if they had a serious illness or if they were approaching the Palliative Care Preferences.............................................3 end of life, and to explore the experiences of those actually dealing with these issues themselves or with loved ones. Help Wanted: Californians’ Views and Experiences of Serious Illness and End-of-Life Care reports selected findings from this survey End-of-Life Preferences................................................9 and highlights key differences by race/ethnicity and income level. Preparedness..............................................................15 KEY FINDINGS INCLUDE: End-of-Life Care.........................................................25 • When palliative care was described to them, 9 in 10 Californians without a serious illness said they would want this type of care if they had a serious illness. Four in 10 of those with a serious illness said they receive this type of help. Influencing Factors.....................................................32 • Among respondents with a serious illness, Californians with low incomes reported the highest level of interest in getting supports beyond disease treatment, compared to those with higher incomes. • Over 9 in 10 respondents of all races/ethnicities and income levels said they would want “as much information as possible” if faced with a serious illness. • Only 7% of Californians with low incomes who also have a serious illness said they were “very prepared” to deal with their illness if it got worse. • Survey respondents reported that at the end of life, it would be extremely important to them that their families are not burdened — by treatment costs (70%), by making tough decisions about their care (60%), or by needing to take care of them (59%). • A majority of respondents said they would prefer to die a natural death (63%) rather than have doctors attempt everything to prolong life (9%). More than 1 in 4 (28%) were not sure. • More than two-thirds (71%) of respondents said they would want to die at home. However, just over a third of Californians who died in 2017 died at home (36%). CALIFORNIA HEALTH CARE FOUNDATION 2 Help Wanted Interest in and Receipt of Palliative Care Services Palliative Care Preferences California, 2019 Three in 4 survey respondents with Some people with a serious illness get extra help. This type of help is on top of regular medical care. It could be help with things a serious illness said they would like dealing with side effects or pain, dealing with stress and other hard feelings, figuring out how to live better with your ill- ness, or finding out what services you might qualify for. Base: respondents with a serious illness (n = 588) want extra supports for physical and Would you want this type of help to deal with Do you already get this type of help? emotional needs that are typically your illness(es)? part of palliative care. Four in 10 Definitely Not No Response 1% respondents reported receiving such 4% assistance. I'm Not Sure 13% Probably Not 19% Yes Definitely Yes 38% 41% No Probably Yes 44% 40% Note: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another serious illness. Segments may not total 100% due to rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 3 Helpfulness of Supportive Services Help Wanted Palliative Care Preferences California, 2019 How helpful would this be for you as you deal with your illness(es)? Base: respondents with a serious illness (n = 588) Californians with a serious illness report that various physical, Help with pain or other side effects emotional, logistical, and financial 22% 41% Pills or medication sent to your home supportive services would be helpful. 20% 39% Nearly two-thirds of respondents Financial help to pay bills and make ends meet said that getting help with pain or 18% 34% Help with sadness, stress, or other hard feelings side effects would be very (41%) or 23% 27% somewhat (22%) helpful. About 6 in Help paying for healthy food 10 said that getting medications sent 17% 28% Mental health care from a therapist or doctor to their home would be very (39%) or 20% 22% somewhat (20%) helpful. Help around the house with chores 15% 27% Help with transportation 17% 22% Spiritual support or counseling 20% 18% Having better or more affordable housing Somewhat Helpful 11% 27% Very Helpful Note: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another serious illness. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 4 Help Wanted Helpfulness of Supportive Services, by Income Level Palliative Care Preferences California, 2019 Across all supportive services included PERCENTAGE RESPONDING “VERY HELPFUL” OR “SOMEWHAT HELPFUL” How helpful would this be for you as you deal with your illness(es)? Base: respondents with a serious illness (n = 588) in the survey, a higher proportion of Financial help to pay bills and make ends meet low-income respondents with serious 78% 59% 29% illness reported the helpfulness Help with pain or other side effects of these services compared to 75% 51% 68% respondents with higher incomes. Pills or medication sent to your home Three of four low-income respondents 74% 54% 56% with a serious illness said that Help paying for healthy food receiving financial assistance with 71% 25% 51% bills, getting help with pain, and Help with sadness, stress, or other hard feelings having pills sent home would be very 65% 50% or somewhat helpful.* 41% Having better or more affordable housing 65% 39% 23% Help with transportation <150% FPL 58% 150%–399% FPL 43% 25% 400%+ FPL Notes: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late- stage liver disease, chronic or end-stage kidney disease, or another serious illness. In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of * For more details see fact sheet Extra Support Most Helpful four. to Low-Income Californians with Serious Illness available at Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. www.chcf.org/helpwanted. CALIFORNIA HEALTH CARE FOUNDATION 5 Interest in Palliative Care Services Help Wanted California, 2019 Palliative Care Preferences DO YOU THINK YOU WOULD WANT THIS TYPE OF HELP IF YOU HAD A SERIOUS ILLNESS, LIKE CANCER? Some people with a serious illness get extra help. This type of help is on top of regular medical care. It could be help with things Nine in 10 survey respondents like dealing with side effects or pain, dealing with stress and other hard feelings, figuring out how to live better with your illness, or finding out what services you might qualify for. Do you think you would want this type of help if you had a serious without a serious illness said they illness, like cancer? Base: respondents without a serious illness (n = 2,000) would want assistance beyond regular Definitely Not No Response 2% 1% medical care — the kinds of supports provided by palliative care — if DEFINITELY OR PROBABLY YES BY Probably RACE/ETHNICITY AND INCOME LEVEL they had a serious illness. This broad Not 8% Asian / Pacific Islander 90% interest was consistently reported Black 89% across race/ethnicity and income. Latino Definitely Yes 92% 42% White 88% <150% FPL Probably Yes 85% 48% 150%–399% FPL 92% 400%+ FPL 90% Notes: Respondents without a serious illness are those who do not report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another serious illness. In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Segments may not total 100% due to rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 6 Help Wanted Interest in Aspects of Palliative Care Palliative Care Preferences California, 2019 The vast majority of respondents PERCENTAGE RESPONDING YES without a serious illness expressed If you had a serious illness, would you want any of your doctors or health care providers to . . . Base: respondents without a seri- ous illness (n = 2,000) interest in receiving the kinds of Talk about both the good and bad things that could happen with your treatment(s)? services that are typically provided as part of palliative care. Nine in 10 93% would want to discuss what to expect Talk about what to expect if your illness gets worse? if their illness got worse, good and 93% bad impacts of treatment, and how Do everything they can to help with pain or side effects? to live better with their illness. This 92% high level of interest contrasts with Talk about how to make your life better as you live with your illness? experiences reported by respondents 90% with serious illness (see page 8). Talk about any fear, stress, or sadness you may be feeling? 89% Ask what is most important for you as you live your life with your illness? 88% Note: Respondents without a serious illness are those who do not report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another serious illness. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 7 Help Wanted Experiences with Aspects of Palliative Care Palliative Care Preferences California, 2019 Nearly two-thirds of California PERCENTAGE RESPONDING YES respondents with a serious illness Have any of your health care providers . . . Base: respondents with a serious illness (n = 588) reported that providers have talked Talked about both the good and bad things that could happen with your treatment(s)? about both the good and bad things that could happen with treatment. 65% Other important discussions about Talked about how to make your life better as you live with your illness? aspects of living with serious illness 58% were reported less frequently. Talked about what to expect if your illness gets worse? 49% Done everything they can to help with pain or side effects? 45% Asked what is most important for you as you live your life with your illness? 36% Talked about any fear, stress, or sadness you may be feeling? 35% Note: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another serious illness. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 8 Help Wanted Most Important Factors at End of Life End-of-Life Preferences California, 2019 Californians are most likely to say a PERCENTAGE RESPONDING “EXTREMELY IMPORTANT” How important is each of the following to you at the end of your life? Base: all respondents (n = 2,588) top preference at the end of life is Making sure family is not burdened financially by my care 70% that their family members are not Being able to pay for the care I need 62% burdened by health care costs and Making sure family isn't burdened by making tough decisions about my care decisions. Survey respondents also 60% noted that being able to pay for the Making sure my wishes for medical care are followed 60% care they need and making sure their Making sure family is not burdened by taking care of me 59% wishes are followed were extremely Being comfortable and without pain 58% important. Having loved ones around me 57% Being at peace spiritually 55% Not feeling alone 51% Having providers who respect my cultural beliefs and values 44% Living as long as possible 41% Being at home 40% Notes: Question is based on a 1-to-7 scale, from 1 being “not at all important” to 7 being “extremely important.” Data reflect the percentage of respondents who rated each response a 7. Additional responses included: “A close relationship with my doctor” (32%), “Seeing friends or family I have not seen in a long time” (25%), and “Going back to my hometown or country where I’m from” (15%). Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 9 Help Wanted Variation in End-of-Life Preferences, by Race/Ethnicity End-of-Life Preferences California, 2019 While there was general agreement PERCENTAGE RESPONDING “EXTREMELY IMPORTANT” How important is each of the following to you at the end of your life? Base: all respondents (n = 2,588) on the most important factors at the Living as long as possible end of life across racial and ethnic 24% groups, some factors were more 59% 53% important to some groups. Latino and 35% Black Californians were particularly Having doctors and nurses who will respect my cultural beliefs and values likely to prioritize spiritual peace and 40% 62% culturally respectful providers, as well 51% as living as long as possible and being 37% at home. Being at peace spiritually 40% 70% 69% 48% Being at home Asian / Pacific Islander 29% Black 48% Latino 49% White 35% Notes: Question is based on a 1-to-7 scale, from 1 being “not at all important” to 7 being “extremely important.” Data reflect the percentage of respondents who rated each a 7. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 10 Preferences Around Prolonging Life, by Race/Ethnicity and Help Wanted Income Level, California, 2019 End-of-Life Preferences If you had an advanced illness, which would you prefer? Base: all respondents (n = 2,588) More than 6 in 10 Californians Dying a natural death if my heart should stop beating or I should stop breathing surveyed prefer dying a natural death, Doctors and nurses using everything available to attempt to prolong my life I’m not sure compared to about 1 in 10 who would Asian / Pacific Islander want to receive all possible care to 61% 13% 26% prolong life. Black respondents (22%) Black were more likely to prefer prolonging 53% 22% 25% Latino life than other racial/ethnic groups. 60% 8% 31% Across all racial/ethnic groups, at least White 1 in 4 were not sure. 67% 6% 25% <150% FPL 53% 12% 33% 150%–399% FPL 61% 9% 30% 400%+ FPL 68% 8% 23% Overall 63% 9% 28% Notes: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Nonresponders not shown. Segments may not total 100% due to nonresponse or rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 11 Help Wanted Preferred Location of Death End-of-Life Preferences California, 2019 A large majority of Californians would If given a choice at the end of your life, where would you want to be when you die? Base: all respondents (n = 2,588) prefer to die at home rather than in a health care facility. The proportion Nursing Home or Skilled Nursing Facility Assisted Living Facility wanting to die at home is consistent 1% 1% No Response with CHCF’s 2011 survey findings Hospice Facility 1% 5% (70%).* Somewhere Else 6% Hospital 15% Home 71% * Lake Research Partners and Coalition for Compassionate Care of California, Final Chapter: Californians’ Attitudes and Experiences with Death and Dying, February 2012, www. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. chcf.org. CALIFORNIA HEALTH CARE FOUNDATION 12 Help Wanted Location of Death End-of-Life Preferences California, 2005, 2011, and 2017 Despite the survey finding that 71% of Californians would prefer to die Hospital at home, only 36% of Californians 45% 2005 2011 who died in 2017 did so at home. 40% 37% 2017 The proportion of Californians dying at home has increased since 2005, Home while the proportion who died in the 28% 33% hospital decreased from 45% in 2005 36% to 37% in 2017. Nursing Home 19% 19% 16% Hospice Facility —1% —2% —2% Notes: Hospital includes inpatient, outpatient, emergency room, or dead on arrival at hospital. Other and place of death unknown are not shown. Source: Multiple Cause of Death files (1999–2017), CDC WONDER Online Database, Centers for Disease Control and Prevention, accessed September 4, 2019, http://wonder.cdc.gov. CALIFORNIA HEALTH CARE FOUNDATION 13 Views of the End of Life Option Act, by Race/Ethnicity and Help Wanted Income Level, California, 2019 End-of-Life Preferences In June 2016, the End of Life Option Act became law in California. This state law gives some terminally ill adults the option to take life-ending medication prescribed by a doctor. Do you support or oppose people having this option? Base: all respondents Three in four Californians surveyed (n = 2,588) support the End of Life Option Act, the Support Oppose California state law that gives some Asian / Pacific Islander terminally ill adults the option to take 76% 20% Black life-ending medication prescribed 70% 28% by a physician. Support of this act Latino varied by race/ethnicity and income, 68% 29% with the highest levels of support White among white respondents and those 82% 16% respondents at or above 400% of the <150% FPL federal poverty level (FPL). 65% 31% 150%–399% FPL 71% 27% 400%+ FPL 83% 14% Overall 75% 22% Notes: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Nonresponders not shown. Segments may not total 100% due to nonresponse or rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 14 Help Wanted Awareness of Serious Illness and End-of-Life Terms Preparedness California, 2011 and 2019 In 2019, a higher percentage of PERCENTAGE RESPONDING YES Californians surveyed indicated they Have you ever heard of any of the following terms? Base: all respondents (n = 2,588) were familiar with terms related to serious illness and end-of-life care 2011 than in 2011.* While four in five 2019 80% survey respondents had heard of 73% 72% hospice care in 2019, less than two 63% in five respondents had heard of palliative care, and about one in five 50% had heard of POLST (Physician Orders 38% 37% for Life-Sustaining Treatment). 22% 17% 13% Hospice Care Do-Not-Resuscitate Advance Directive Palliative Care POLST (DNR) Order (Physician Orders for Life-Sustaining Treatment) * Lake Research Partners and Coalition for Compassionate Care of California, Final Chapter: Californians’ Attitudes and Experiences with Death and Dying, February 2012, www. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. chcf.org. CALIFORNIA HEALTH CARE FOUNDATION 15 Help Wanted Awareness of Serious Illness and End-of-Life Terms, by Preparedness Income Level, California, 2019 Familiarity with terms related to PERCENTAGE RESPONDING YES Have you ever heard of any of the following terms? Base: all respondents (n = 2,588) serious illness and end-of-life care Hospice Care varied across income levels. Survey 64% respondents under 150% of the 76% 90% federal poverty level (FPL) were Do-Not-Resuscitate (DNR) Order least familiar with each term, while 48% respondents at or above 400% FPL 67% 85% were most familiar with each term. Advance Directive Across income groups, the highest 33% level of familiarity was with hospice 45% 60% care and the lowest was with POLST Palliative Care (Physician Orders for Life-Sustaining 22% 30% Treatment). 49% POLST (Physician Orders for Life-Sustaining Treatment) 18% <150% FPL 22% 150%–399% FPL 23% 400%+ FPL Note: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 16 Help Wanted End-of-Life Wishes in Writing, by Demographic Groups Preparedness California, 2019 Two-thirds of Californians surveyed do Do you have any of your wishes regarding the medical treatment you would want in a written document? Base: all respondents not have their end-of-life wishes in (n = 2,588) writing. Older adults are most likely to No Response 1% say they have written documentation of their wishes. Latino respondents MOST LIKELY TO SAY YES 65+ and those under 150% of the federal 61% poverty level (FPL) were most likely White 42% to say they do not have wishes in Yes Has Serious Illness 34% 40% writing. The proportion of survey 400%+ FPL 40% respondents who reported having MOST LIKELY TO SAY NO their wishes in writing (34%) was No Latino 66% 76% higher than in CHCF’s 2011 survey <150% FPL 74% (23%).* 150%–399% FPL 69% Black 68% Note: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Respondents with a serious illness include those who report * Lake Research Partners and Coalition for Compassionate emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another Care of California, Final Chapter: Californians’ Attitudes and serious illness. Segments may not total 100% due to rounding. Experiences with Death and Dying, February 2012, www. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. chcf.org. CALIFORNIA HEALTH CARE FOUNDATION 17 Help Wanted Barriers to Documenting End-of-Life Wishes Preparedness California, 2019 Among survey respondents who PERCENTAGE RESPONDING YES Are any of these a reason you do not have your wishes in writing? Base: respondents who do not have their wishes in writing had not put their end-of-life wishes (n = 1,633) in writing, the main reasons for not I trust my family to make decisions for me doing so included having trust in 47% family members to make decisions, I'm too busy right now with other things feeling too busy, and not wanting to 42% think about death or dying. I don't want to think about death or dying 41% I don't know how to put wishes in a legal document 34% A legal document is too permanent 16% Doctors might not give me care that could help 15% I don't know why I would need this 14% Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 18 Help Wanted Preferred Decisionmaker Preparedness California, 2019 Nearly all Californians surveyed Let’s say you were not able to make decisions about your care near the end of your life. Who would you want to make decisions about your care? Base: all respondents (n = 2,588) would want family members to make Preferred Decisionmaker decisions about their care near the Friend Other 2% end of life, if they were unable to 2% No Response Doctor 1% make decisions for themselves. Half 2% reported wanting their spouse or partner to make those decisions. PREFERRED FAMILY MEMBER Spouse/partner: 51% Multiple family members together: 16% Parent: 9% Children working together: 7% Child: 6% Family Silbing: 5% 94% Notes: The full question asked was, “Let’s say you were not able to make decisions about your care near the end of your life. Your doctor says there are different options. Someone has to decide for you. Who would you want to make decisions about your care?” Segments may not total 100% due to rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 19 Help Wanted Discussed End-of-Life Wishes, by Demographic Groups Preparedness California, 2019 Slightly less than half of survey Have you talked with this person (preferred decisionmaker) about the kind of medical care you would want near the end of your respondents have talked with their life? Base: all respondents (n = 2,588) preferred decisionmaker about the kind of medical care they would want No Response 1% near the end of life. Respondents MOST LIKELY TO SAY YES age 65 and older and those with a 65+ serious illness were most likely to 70% Has Serious Illness have discussed their wishes with 59% White their preferred decisionmaker. Asian / 56% 400%+ FPL Pacific Islander, Black, and low-income No Yes 51% 54% 45% respondents were least likely to have MOST LIKELY TO SAY NO had these discussions. Asian / Pacific Islander 70% Black 62% <150% FPL 62% Notes: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late- stage liver disease, chronic or end-stage kidney disease, or another serious illness. In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 20 Help Wanted Doctor Has Asked About End-of-Life Wishes Preparedness California, 2019 One in five survey respondents with Have you ever had a doctor ask you about your wishes for medical treatment at the end of your life? a serious illness and one in five respondents age 65 or older reported Among Those with a Serious Illness Among Those Age 65 and Older Base: respondents with a serious illness (n = 588) Base: respondents age 65+ (n = 553) that their doctor has asked about No Response 1% No Response 1% their end-of-life wishes. Among all respondents, about 1 in 10 (9%) said that their doctor had asked about Yes Yes end-of-life wishes (not shown). 21% 20% No No 78% 79% Notes: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late- stage liver disease, chronic or end-stage kidney disease, or another serious illness. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 21 Help Wanted Would Like to Talk to Doctor About End-of-Life Wishes Preparedness California, 2019 About four in five Californians If you were seriously ill, would you like to talk with your doctor about your wishes for medical treatment towards the end of surveyed said they would definitely your life? Base: all respondents (n = 2,588) (54%) or probably (28%) want to talk Definitely or Probably Not with their doctor about their wishes No Response 5% 1% for medical treatment toward the end of life. Older adults, Black respondents, women, and white respondents Maybe 13% were most likely to say they would MOST LIKELY TO SAY “DEFINITELY YES” definitely want to talk with their 65+ 61% doctor about their wishes. Black Definitely Yes 61% Probably Yes 54% Women 59% 28% White 59% Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. Segments may not total 100% due to rounding. CALIFORNIA HEALTH CARE FOUNDATION 22 Help Wanted Information Preferences Around Serious Illness, by Race/ Preparedness Ethnicity and Income Level, California, 2019 About 9 in 10 Californians without If you had a serious illness, how much information would you want from your health care provider? Base: respondents without a serious illness (n = 2,000) a serious illness reported that they would like as much information as possible from their health care Just enough info to get me through provider if they had a serious illness. day by day BY RACE/ETHNICITY 7% No Response Asian / Pacific Islander 1% 91% 9% Results were consistent across income Black 91% 7% levels and racial/ethnic groups. Latino 94% 6% White 91% 8% BY INCOME LEVEL As much info as possible <150% FPL about what I can expect 92% 8% now and in my future 150%–399% FPL 92% 92% 8% 400%+ FPL 93% 6% Notes: Respondents without a serious illness are those who do not report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late-stage liver disease, chronic or end-stage kidney disease, or another serious illness. In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 23 Help Wanted Feeling Prepared If Illness Gets Worse, by Income Level Preparedness California, 2019 One in 6 survey respondents with a How prepared do you feel to deal with your illness(es) if it gets worse in the future? By prepared, we mean you know what is going on, you can plan for what is coming, and you feel ready. Base: respondents with a serious illness (n = 588) serious illness felt very prepared to deal with their illness(es) if it worsens. 7% 15% 17% Very Prepared Adults with the lowest incomes are 25% Somewhat Prepared Not Too Prepared the least likely to feel prepared, with Not at All Prepared 1 in 14 reporting that they felt very prepared. 58% 63% 66% 61% 26% 17% 15% 7% 13% – 3% – 3% – 1% Overall <150% FPL 150%–399% FPL 400%+ FPL Notes: Respondents with a serious illness include those who report emphysema or chronic obstructive pulmonary disease, heart failure, cancer, a stroke, HIV/AIDS, cirrhosis or late- stage liver disease, chronic or end-stage kidney disease, or another serious illness. In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Nonresponders not shown. Segments may not total 100% due to nonresponse or rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 24 Help Wanted Overall Rating of End-of-Life Care of Loved One, by Insurance End-of-Life Care Type, California, 2019 Among survey respondents who lost Overall, how would you rate the care your loved one received at the end of life — that is, in the last few months of their life? Base: respondents who lost a close loved one within the past two years (n = 1,276) a loved one in the past two years, 4 Overall in 10 rated the care their loved one No Response 2% received as either excellent (14%) or Not Sure, Does Not Apply Excellent 14% very good (28%). One in 14 (7%) 17% Poor rated their loved one’s care as poor. 7% Very Good Respondents whose loved one had Fair 28% 10% private insurance were more likely Good Public Insurance 22% Private Insurance than those with public insurance to Not Sure, No Response No Response Does Not Apply 4% 1% 2% rate care as excellent (24% vs. 15%). Poor 10% Excellent Not Sure, 15% Does Not Apply Excellent 17% 24% Fair Poor 10% 4% Fair Very Good 6% 32% Good Good Very Good 28% 15% 34% Notes: Public insurance includes respondents who said their loved one’s source of coverage was either Medicare only, Medi-Cal only, Medicare and Medi-Cal, or VA benefits / Tri-Care. Private insurance includes respondents who said their loved one’s source of coverage was through an employer or a private plan they purchased on their own. Segments may not total 100% due to rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 25 Help Wanted Provider Communication at End of Life, by Insurance Type End-of-Life Care California, 2019 Among survey respondents who Overall, how would you rate the doctors in terms of how well they communicated with your loved one and family members about treatment options? Base: respondents who lost a close loved one within the past two years (n = 1,276) lost a loved one in the past two Overall years, 1 in 3 reported that doctors’ No Response 2% communication about treatment Excellent 12% options was either excellent (12%) Not Sure, Does Not Apply 26% or very good (21%). One in 14 (7%) Very Good 21% rated the doctors’ communication as Poor 7% poor. Respondents whose loved one Fair Good Public Insurance 12% 20% had private insurance were twice as Private Insurance No Response 1% No Response 2% likely as those with public coverage to Not Sure, rate communication as excellent (29% Does Not Excellent Poor Apply 12% 14% Not Sure, Does Not Apply Excellent vs. 14%). 18% 29% 11% Poor 4% Very Good Fair 25% Fair 12% 10% Very Good Good 24% Good 14% 27% Notes: Public insurance includes respondents who said their loved one’s source of coverage was either Medicare only, Medi-Cal only, Medicare and Medi-Cal, or VA benefits / Tri-Care. Private insurance includes respondents who said their loved one’s source of coverage was through an employer or a private plan they purchased on their own. Segments may not total 100% due to rounding.. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 26 Help Wanted Loved One’s Experience with Aspects of Palliative Care End-of-Life Care California, 2019 More than 7 in 10 survey respondents As far as you know, did your loved one’s doctors or health care providers . . . Base: respondents who helped make health care reported that providers did everything decisions for a loved one who died from a serious or chronic health problem in the past two years (n = 238) they could to help with their loved Do everything they could to help with your loved one’s pain or side effects from their illness or treatment? one’s pain and side effects and 74% discussed important aspects of their illness. Slightly more than half Talk with you or your loved one about how to make your loved one’s life better as they lived with their illness? reported that providers discussed 74% difficult emotions with their loved Talk with you or your loved one about what to expect if their illness got worse? ones. 73% Talk with you or your loved one about both the good and bad things that could happen with their treatment? 72% Ask what was most important for your loved one as they lived their life with their illness? 64% Talk with you or your loved one about any fear, stress, or sadness you or they were feeling? 53% Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 27 Help Wanted Loved One Feeling Prepared as Illness Got Worse End-of-Life Care California, 2019 Three in 10 survey respondents How prepared was your loved one to deal with their illness as it got worse? Base: respondents who helped make health care reported that their loved one was decisions for a loved one who died from a serious or chronic health problem in the past two years (n = 238) unprepared to deal with their illness as it got worse. Two in 10 thought their loved one was very prepared. 42% 21% 17% 14% 6% Very Prepared Somewhat Prepared Not Too Prepared Not at All Prepared Not Sure Note: This question defined prepared as “your loved one knew what was going on, they could plan for what was coming, and they felt ready.” Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 28 Help Wanted Preferred Versus Actual Location of Death End-of-Life Care California, 2019 Many survey respondents reported As far as you know, where do you think your loved one would have wanted to die if given the choice? Where did your loved one that their loved ones did not pass die? Base: respondents who lost a close loved one within the past two years (n = 1,276) away in their preferred location. Nearly Preferred Location of Death 65% Actual Location of Death 2 in 3 respondents reported that their loved ones would have preferred to die at home, while only 4 in 10 were able to do so. In contrast, nearly 4 in 10 died in the hospital, which was the 39% 38% preferred location for less than 1 in 10 loved ones. 22% 5% 6% 8% 2% 10% 1% Home Hospital Nursing Home/Facility, Somewhere Else I'm Not Sure Hospice Facility, or Assisted Living Facility Notes: Nonresponders not shown. Segments may not total 100% due to nonresponse or rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 29 Help Wanted Loved One’s Experience at End of Life End-of-Life Care California, 2019 Among respondents with a loved Think about the very end of your loved one’s life. Do you think the end went the way your loved one wanted it to go? Base: re- one who died from a serious illness spondents who had a loved one die from a serious or chronic health problem in the past two years (n = 889) in the past two years, about one in No Response 2% three reported that the end of that person’s life did not go they way their loved one wanted. About the same proportion thought it did go the way their loved one wanted. I’m Not Sure Yes 32% 33% No 34% Note: Segments may not total 100% due to rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 30 Help Wanted Loved One’s End-of-Life Wishes Followed End-of-Life Care California, 2019 A majority of survey respondents To what extent do you feel your loved one’s end-of-life wishes were followed and honored by the doctors, nurses, and other reported that their loved one’s end- health care providers who cared for them? Base: respondents who lost a close loved one within past two years (n = 1,276) of-life wishes were either completely No Response followed and honored (29%) by the 2% health care providers who cared for them, or followed and honored for the most part (27%). One-third of Maybe respondents were not sure. 13% Completely I'm Not Sure 29% 33% For the Most Part 27% Not at All 3% In Some Ways But Not Others 6% Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 31 Factors That May Impact Health and Access to Care, Help Wanted Influencing Factors by Race/Ethnicity and Income Level, California, 2019 Social isolation, housing insecurity, Asian / Pacific Islander and food insecurity can all negatively Food Insecurity 24% 18% Housing Insecurity impact a person’s health and ability 21% Social Isolation Black to access care when needed. Survey 44% 36% 23% respondents of color and those Latino 46% with the lowest incomes were 32% 21% disproportionately likely to report White 16% 20% a lack of social networks and an 14% <150% FPL insecurity with basic needs. 62% 49% 24% 150%–399% FPL 40% 29% 22% 400%+ FPL 14% 10% 13% Overall 32% 24% 18% Notes: Social isolation includes respondents who disagree with the statement “When I feel lonely there are several people I can talk to.” Housing insecurity includes respondents who say it is hard to pay their rent or mortgage every month. Food insecurity includes respondents who say they often or sometimes “don’t have enough to eat” or “have enough to eat but not always the kinds of food we want.” In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 32 Help Wanted Barriers to Accessing Health Care Influencing Factors California, 2019 One in three survey respondents said PERCENTAGE RESPONDING YES they have faced barriers to getting Have you ever felt like you could not get health care services you needed because of . . . Base: all respondents (n = 2,588) the health care services they need. The most common barriers cited were 32% insurance status or type and income. 21% 19% 17% 4% 4% Yes to Any Type of Your Being Your Your Insurance Income Uninsured Language Race/Ethnicity Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 33 Help Wanted Barriers to Accessing Health Care, by Race/Ethnicity and Influencing Factors Income Level, California, 2019 About 4 in 10 Black, Latino, and PERCENTAGE RESPONDING YES TO ANY low-income respondents said they Have you ever felt like you could not get health care services you needed because of your race/ethnicity, your language, being uninsured, your income, or your type of insurance? Base: all respondents (n = 2,588) reported feeling like they could not Asian / Pacific Islander get needed health care services 24% because of their race/ethnicity, Black language, insurance status or 43% Latino type, and/or income level. Black 40% respondents were much more likely White to cite race/ethnicity as a barrier 26% (14%) than Latino (6%), Asian / <150% FPL Pacific Islander (2%), and white (2%) 44% 150%–399% FPL respondents (not shown). 40% 400%+ FPL 20% Overall 32% Note: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 34 Help Wanted Felt Judgment or Discrimination from Provider Influencing Factors California, 2019 One in five survey respondents said PERCENTAGE RESPONDING YES they felt judged or treated differently Have you ever felt judged or treated differently by a health care provider because of . . . Base: all respondents (n = 2,588) by a health care provider. The most common reasons for feeling judged or treated differently were the respondent’s type of insurance or being uninsured. 19% 12% 9% 8% 7% 5% Yes to Any Type of Being Your Your Your Insurance Uninsured Income Race/Ethnicity Language Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 35 Help Wanted Felt Judgment or Discrimination from Provider, by Race/ Influencing Factors Ethnicity and Income Level, California, 2019 Roughly one in three Black survey PERCENTAGE RESPONDING YES TO ANY respondents and those living below Have you ever felt judged or treated differently by a health care provider because of your race/ethnicity, your language, being uninsured, your income or your type of insurance? Base: all respondents (n = 2,588) 150% of the federal poverty level Asian / Pacific Islander (FPL) reported feeling judged or 15% treated differently because of their Black insurance status or type, income, 37% language, and/or race/ethnicity. Latino 22% White 14% <150% FPL 32% 150%–399% FPL 22% 400%+ FPL 11% Overall 19% Note: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 36 Help Wanted Trust in Health Care Providers, by Race/Ethnicity and Income Influencing Factors Level, California, 2019 Overall, 40% of survey respondents In general, how much do you trust your health care providers to act in your best interest? Base: all respondents (n = 2,588) expressed a lot of trust in their health Do Not Have Provider 3% care providers to act in their best Not at All 3% No Response interest; white and high-income 1% respondents were most likely to report a lot of trust in their providers. Only Not Too % RESPONDING “A LOT” 12% of respondents had not much Much Asian / Pacific Islander 33% or no trust in their providers to act in 9% Black A Lot 39% their best interests. Latino 40% 32% White 49% <150% FPL 34% Some 150%–399% FPL 45% 36% 400%+ FPL 46% Note: In 2019, the federal poverty level (FPL) was $12,490 for a single person and $25,750 for a household of four. Segments may not total 100% due to rounding. Source: Californians’ Attitudes Toward and Experiences with Serious Illness and End-of-Life Care, statewide survey of 2,588 adult Californians, PerryUndem, 2019. CALIFORNIA HEALTH CARE FOUNDATION 37 Help Wanted Methodology Californians’ Views and Experiences of Serious Illness and End-of-Life Care The survey was conducted June 6 through July 2, 2019, among a representative sample of AU T H O R S 2,588 Californians age 18 and older, including 1,276 respondents who have lost a loved one in PerryUndem Research/Communication is a the past two years. The margin of error is +/- 3.1 percentage points for the total results. nonpartisan public opinion research firm based in Washington, DC. PerryUndem studies opinion The survey was administered using Ipsos’s KnowledgePanel, which is the first online research on a number of public policy issues, including panel that is representative of the US population. Panel members are randomly recruited health care and topics related to equity. Learn through address-based sampling methods, and households are provided with hardware and more at www.perryundem.com. access to the Internet if needed. Jen Joynt is an independent health care consul- tant. For additional information on methodology and demographics of respondents, visit www. chcf.org/helpwanted. F O R M O R E I N F O R M AT I O N California Health Care Foundation 1438 Webster Street, Suite 400 Oakland, CA 94612 510.238.1040 www.chcf.org CALIFORNIA HEALTH CARE FOUNDATION 38