Help Wanted: Californians’ Views and Experiences of Serious Illness and End-of-Life Care

PerryUndem Research/Communication
Jen Joynt, Independent Health Care Consultant


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Most people will experience serious illness at some point in their lives — as a patient, a caregiver, or a friend or family member. 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 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 and highlights key differences by race/ethnicity and income level. A webinar on November 5 (recording and slides are available) explored survey findings and implications.

The following materials are available:

Key Findings. A data snapshot (PDF) is available below and also under Document Downloads.

Fact Sheets. These brief summaries provide details on two topics of interest:

Background Materials. The survey methodology (PDF) and the complete survey questionnaire and topline results (PDF) are available to download. To request the full dataset, email [email protected].

Videos. Three videos by StoryEyed Media describe the experiences and perspectives of people with serious illness, caregivers, and health care providers (see below).

Key survey findings include:

  • 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.
  • 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%).

 

See our full collection of materials covering Views on Serious Illness and End of Life.