Most Californians Have Done Little Planning for End-of-Life Care, Study Finds
California HealthCare Foundation urges conversations during holidays
Thirty years after California passed the nation’s first living will law, nearly 70 percent of residents have not put their end-of-life wishes in writing. And only half have discussed those wishes with the person they would want to make decisions on their behalf if they were unable to do so themselves, according to results of a new survey released today by the California HealthCare Foundation (CHCF).
“The survey results clearly demonstrate that more families need to discuss end-of-life issues and make their wishes clear,” said Mark D. Smith, M.D., M.B.A., president and CEO of CHCF. “With the holidays approaching, it is a good time for families to talk about important matters, including their wishes for care at the end of life.”
The study, which marks the Foundation’s initial effort to improve end-of-life care in California, also highlights the disparate views of the state’s diverse populations. For example, the study found significant racial and ethnic differences on such topics as people’s concerns about being in pain and discomfort near the end of their lives. The report also focuses on the experiences of those who have lost loved ones in the year preceding the survey.
Gap Between End-of-Life Wishes and Actions
Perhaps not surprisingly, the survey reveals a disconnect between what people describe as their most important end-of-life wishes and whether they have precisely expressed those wishes to family members. Among all Californians, the survey found:
- Eighty-three percent of those surveyed said “having their end-of-life wishes in writing is very or somewhat important.” However, only 36 percent actually said they had their wishes in writing in the form of an advance directive or living will.
- Only about half of those surveyed (51 percent) have talked with their loved ones about such end-of-life issues as whether they would want to be kept alive on life support. Moreover, nearly a quarter (22 percent) of these conversations were just casual conversations or remarks made in passing.
“People may feel that their loved ones know them so well they do not need to verbalize their wishes,” said Susan Kannel, vice president of Lake Research Partners, which conducted the poll on CHCF’s behalf. However, some recent high-profile cases of family struggles over these issues point to the need for frank discussions and putting those wishes in writing.
Views Vary Among Ethnic Groups
The study also highlights that, when it comes to death and dying, attitudes toward the desired level of medical intervention vary.
- While 70 percent of all Californians said there are devastating circumstances in which a patient should be allowed to die without heroic life-saving efforts, there were sharp differences in attitudes based on ethnicity. Eighty-three percent of white respondents said patients should be allowed to die in certain situations, but only 52 percent of African Americans, 53 percent of Latinos, and 66 percent of Asians expressed that view.
- Eighty percent of all respondents said that if they were in a persistent coma with no hope for significant recovery, they would not want to be kept alive on life support. However, a higher percentage of white Americans (87 percent) than African Americans (72 percent) or Latinos (70 percent) felt this way.
- Sixty-two percent of African Americans said they are very concerned about finding health care providers who will understand and respect their cultural beliefs and values, contrasted with 35 percent of Latinos and 30 percent of white Americans.
In a diverse state such as California, it is particularly important for health care providers to recognize that cultural differences exist surrounding end-of-life care and to take steps to ensure they are communicating effectively with patients and family members.
Pain Control and Dying at Home
Finally, more than eight out of ten Californians who had recently lost a loved one reported that health care providers did all they could to alleviate the patient’s pain before his/her death. Nevertheless,
- Six in ten report that their loved one died in pain, including a third (33 percent) who report that their loved one was in a great deal of physical pain. African Americans were more likely to report that their loved one died in a great deal of pain (45 percent) than Latinos (36 percent) and whites (28 percent).
- Sixty-eight percent of Californians said that when they think about death and dying, they are concerned about pain and discomfort; 39 percent said they were “very concerned.”
- Sixty-seven percent of Californians reported that their loved one would prefer to die at home, yet almost two-thirds of Californians actually die in hospitals and nursing homes.
“For the past 30 years, California has been a leader in end-of-life issues, including living wills, hospice care, pain management, and physician education,” said Dr. Smith. “Yet many Californians have not used the resources available to them, which is why CHCF plans to focus much effort in this area in the months and years ahead.”
Building on the insights gained from this research, the Foundation has compiled additional materials examining end-of-life care in the state. Also released today are two snapshots, Death and Dying in California and Hospice in California: A Look at Cost and Quality.
Copies of the survey report Attitudes Toward End-of-Life Care in California, along with the additional snapshots on death and dying and hospice care, are available through the links below.
Further end-of-life resources, including advance directive/living will forms, are available online at www.finalchoices.org.
About the Study
On behalf of CHCF, Lake Research Partners (LRP), a national polling firm, surveyed 1,778 Californians age 18 and older. The study included oversamples of African Americans and Asians, as well as people who had lost a close friend or family member in the previous 12 months. The study also included focus group discussions with white, Latino, Asian, and African Americans who had lost a loved one in the previous 12 months.
About the California Health Care Foundation
The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.