About 72% of respondents to a National Partnership for Healthcare and Hospice Innovation (NPHI) survey said they do not believe that the U.S. health care system does a good job or caring for the aging population.
NPHI conducted the survey in September in collaboration with Emergence Creative and the consulting firm SIR. The research follows up on a 2017 report by the Kaiser Family Foundation and The Economist to gauge whether perceptions of health care had changed in the intervening years, particularly in light of the pandemic.
Among the 2,009 survey participants, 82% indicated that they believed that the system prioritizes profits over patients. Though 74% expressed a positive view of hospice care, only 31% said they trusted the health care system as a whole.
“The lack of trust in our health care system seems to be a real concern,” NPHI President Carole Fisher told Hospice News. “Because what people are not trusting seems to be the profiteering aspects, making money off of their illnesses at the time when they’re feeling most vulnerable.”
White respondents, and those who have health insurance, expressed more trust in the system than members of other communities and the uninsured.
Trust also was higher among members of the Baby Boomer generation than younger Americans. Hospices may want to take this into consideration when communicating with families about their loved ones’ care, according to Debbie McCarron, director of special projects at NPHI.
“It was striking that the younger generations are distrusting and don’t feel like we’re ready. They’re probably going to be the ones making some of these decisions for the aging generation in the upcoming years,” McCarron told Hospice News. “We talk a lot about trying to get people in earlier, and I think those are going to be the people that need to be swayed a bit.”
Other key findings suggest that many in the United States don’t believe that nation is prepared to care for the aging population or the associated societal impact. While 76% of respondents indicated that they thought the aging population presented a problem, only 14% said the country was prepared to address it.
Some of the top areas for improvement include support for family caregivers, emphasis on comfort care at the end of life and social determinants of health.
The results also highlighted the need for more communication between patients and providers about individuals’ end-of-life goals and wishes. Though 89% of those surveyed indicated that they felt comfortable talking about death, 81% said that they had never had a conversation about end-of-life care with a health care provider.
“People want to have those conversations, yet perhaps physicians that are not trained hospice and palliative medicine don’t know how to have a conversation,” Fisher said. “I’m really hoping that this research illuminates the fact that health care systems and providers could do a better job of bringing the experts in to have some of these challenging conversations, and we could serve as partners more collaboratively to help people understand their choices.”
Consistent with prior research, most respondents indicated that they would prefer to age in place and die in the homes, comfortable and without unmanaged pain. They also wished to avoid placing the burden of their end-of-life decisions on family members, though 66% said they had not documented their wishes.
Hospices may be able to use the survey data to inform their outreach to the communities they serve, according to Ethan McChesney, policy director at NPHI.
“We know that only about 51% Medicare beneficiaries in any given year are utilizing hospice. So there’s fertile ground out there for people who are not getting the benefits of comprehensive, multidisciplinary end-of-life care,” McChesney told Hospice News. “Hopefully, there are some components from this research that that help folks in different markets to kind of differentiate themselves more effectively and market themselves better to emerging populations.”
