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St. David’s Foundation commissioned a statewide survey to better understand Texans’ experiences, end-of-life priorities, and barriers around end-of-life care. The study found that most Texans share end-of-life preferences, such as wanting to die at home and avoiding the financial burden of care. However, most Texans, including older adults and those with a serious illness, are unprepared for decisions around end-of life care. Just one-third said their loved one’s end-of-life went the way they wanted it to go and Black and Latino respondents report more challenges related to end-of life care. Loved ones whose deaths went the way they wanted were twice as likely to have died at home and twice as likely to have been receiving hospice care.
Some of the findings include:1. Most Texans have similar preferences at the end of their lives. Respondents say they want:
- To die at home (76%)
- To die a natural death (61% v. 16% preferring to prolong life as long as possible)
- To be sure their family is not burdened financially or by making tough decisions about their care (77% rate 6 or 7 on a 1-7 importance scale)
- To be comfortable and without pain (75%)
- To be sure their family is not burdened by taking care of them (74%)
- To be able to afford the care at the end of their life (73%)
- Family members making end-of-life decisions for them if they aren’t able to (89%)
These preferences are fairly consistent across demographic segments of the population.
2. Despite shared preferences, just 37% of Texans said their loved one’s end-of-life went the way they wanted it to go. 902 respondents have had a loved one recently die in
Texas. When asked about their loved one’s end-of life experiences, about a third (37%) say their loved one’s end of life went the way the loved one wanted it to go. The same proportion (37%) says the end of life did not go the way their loved one wanted it to go. These loved ones are more likely than others to:
- Be uninsured (48% say didn’t go the way they wanted)
- Have died in a hospital (53%)
- Have not gotten hospice care (55%)
What could have gone better? Data suggest a few gaps between patients’ needs and experiences:
- While 70% say their loved one preferred to die at home, only 37% did so
- Just 23% of those who died from a serious illness say their loved one was “very prepared” to deal with their illness as it progressed
- Forty-two percent say their loved one’s end-of-life wishes were not completely followed or honored
- Close to half (47%) say their loved one faced some type of challenge related to care, such as facing problems with insurance coverage, being uninsured, or encountering language or cultural barriers
- Consistently, the study found that loved ones who were receiving hospice care had better end-of-life care and experiences than those who did not
3. Black and Latino respondents experienced more barriers to end-of-life care than their white counterparts.
- Fewer respondents of color have wishes in writing or have talked about end-of-life care
- Respondents least likely to say their loved one’s end-of-life wishes were followed and honored include:
• Black respondents
• Loved ones who did not receive hospice care
• Loved ones who were uninsured
• Rural respondents - Half of respondents (47%) report some barrier related to accessing end-of-life care
• 20% say their loved one faced problems with insurance covering care
• 19% say language was a barrier to getting the best possible care
• 16% say their loved one’s providers were “fair” or “poor” at respecting cultural values and beliefs
• 16% say their loved one was uninsured - Of the 47% reporting some barrier to care, Latina/o/x respondents (52%), respondents with lower incomes (55%), and urban respondents (57%) were among the most likely to report their loved one experiencing one of these barriers
- Black respondents were less likely than others to say their health care providers were excellent or very good at understanding and respecting their cultural beliefs and values
4. Most Texans, even older adults, are unprepared for decisions about end-of-life care. Data suggest most Texans lack preparation for end-of-life care and decisions.
- While a majority of respondents (87%) say it’s important to have wishes regarding end-of-life medical treatment in writing, fewer than half (39%) have done so – including 48% of respondents age 60 and older
- A large majority of adults (83%) say they’ve never had a doctor ask them about their wishes for end-of life medical treatment, including majorities of adults 60 and older (81%) and those with a serious illness (79%)
- About three-quarters of respondents (74%) say they’d want to have a conversation with their doctor about end of-life care if they were faced with a serious illness
- Three in four have heard the term “hospice care,” while one in three have heard the term “palliative care”
- Texans are most likely to turn to a doctor (51%) or family member (44%) for information about end-of-life care; just (13%) say they’d turn to the internet for information
To learn more about the study, please click here. Hospice Austin appreciates St. David’s Foundation’s commitment to honoring the health care wishes of our community. St. David’s Foundation provides significant funding to Hospice Austin for our advance care planning program (the GIFT Project), home-based palliative care program (Austin Palliative Care), inpatient care (Hospice Austin’s Christopher House), and care for patients who are uninsured or underinsured.
Thank you, St. David’s Foundation!
Dana Joslin
Interim Executive Director