Study finds gap between what rural residents want for end-of-life care and what they receive

Lack of conversations among the family members, and a more difficult access to healthcare are among the reasons responsible for the discrepancy.

Daily Yonder by Center for Rural strategies and Liz Carey

On September 16, 2023

When it comes to end-of-life wishes, a new study has found that while most people have end-of-life wishes, only a little over a third of them actually get them fulfilled. That is even more true with rural residents, researchers said.

Lula Reese said she didn’t have to ask her mother what she wanted as she neared the end of her life – she just knew.

“She told us she didn’t want to live with any of her children,” Reese said of her mother, Lula Simms. “She didn’t want to be a burden on any of us. We never talked about what she wanted. We just knew.”

Lula Simms lived in rural Bastrop, Texas, population 10,434, all her life and turned 100 in November, 2022. For the last two years of her life, her eight children cared for her in her own home with the help of hospice.

“She was in hospice for two years,” Reese said. “One day, she was different – she had stopped eating and she wasn’t the same. We took her to the hospital, and they told us she was transitioning.”

Simms died in February 2023, just a few days after her children rushed her to the hospital. For Reese, making sure that her mother’s wishes regarding the end of her life was never something that was written down. It was just something the family knew – her mother wanted to stay in her own home as long as he could. With the help of hospice, her family was able to make sure those wishes were met.

A new study from St. David’s Foundation in Texas has found that when it comes to end-of-life care, most Texans want to die at home (76%), and to not be a burden to their family (77%). But only one in three people surveyed said their loved one’s wishes were honored. Of those who are least likely to have their end-of-life wishes followed are rural residents, the study found.

Only 37% of the survey respondents said their loved ones died at home. Close to half of them (47%) said their loved one faced challenges related to their care – from problems with insurance coverage to facing cultural or language barriers.

Andrew Levack, senior program officer with St. David’s Foundation, said there are a number of reasons why ensuring a rural loved one’s wishes are met may be difficult. Key among them is that conversations about the end of life just don’t take place.

“I think a big part of it is that those conversations and that planning around how to make (end-of-life wishes) happen don’t necessarily take place,” he said in an interview with the Daily Yonder. “One of the interesting things the study found was how few conversations respondents had with their doctors around plans for end of life. I think people have an idea of what they would like, but it takes some active planning and advocacy to make that happen. In the absence of that, I think people don’t realize what their ideal scenario would be.”

Dr. Kate Tindell, medical director for Austin Palliative Care and Hospice, said most of the hospice referrals her program has come from hospitalizations. That presents a problem for rural residents who are further away from hospitals and more isolated, she said.

“The rural community I think tends to already have limited exposure to health care,” she said in an interview with the Daily Yonder. “I think (the Covid-19 pandemic) really compounded that for them. Rural communities were suffering from the closure of healthcare access. The strain on health care from Covid makes it feel like we’re seeing them have less and less access.”

Lack of access can lead to a less intimate relationship between patient and doctor who could discuss hospice with an elderly patient.

“People have really disjointed health care now,” she said. “We’ve sort of lost that sense that there is a captain of the medical ship who is aware of all the moving parts and is giving the patient that guidance. I think that really causes people to not have the kind of relationship that would allow them to have that kind of conversation (about end-of-life wishes) the way they would if they had seen the same provider every single time for 10 years.”

Sometimes, it falls to non-profit organizations to get information about making end-of-life decisions to older rural residents. Sumai Lokumbe, is one of Bastrop’s OWLs – or Old Wise Leaders. She works with the aging population in her area to make sure they get the care they need. Many people in her community are unaware of what hospice and palliative service is or have a misunderstanding about what end-of-life care entails.

“I explain to people exactly what hospice does and what it is,” she said in an interview with the Daily Yonder. “They come in to make sure you’re not in pain and make you comfortable and take some of the stress off the family members, plain and simple.”

In some instances, cultural differences create challenges to overcome. Many African Americans in her area face cultural beliefs that prevent them from having anyone but family care for loved ones as they age. Other African American community members may distrust a system that has previously not cared for them.

“In the African American community especially, there is a belief that you stay with your family,” she said. “But there’s also a lot of distrust of the system. They don’t have a lot of trust in things put in place for them by people who don’t look like them.”

For Lula Reese, hospice was a way for her family to care for her mother as she transitioned through the end of her life.

“We had heard of hospice, but we used to always think that hospice care meant that she was going to pass away in the next five or six days,” Lula Creek said. “But we learned that wasn’t the case… Hospice and helped us take care of her, like giving her baths and bringing her supplies when she ran out.”

Even without those final wishes in writing, the family was able to keep her in her home as long as possible, she said. Hospice helped them to care for their mother, as well as alleviate financial burdens they know she would have feared placing on them.

“We didn’t talk to her about hospice care, and you know, we didn’t talk to her about what she wanted to do in her last days, ” she said. “We didn’t find out about it until after we had her service. She had already written that her desire was just to live long enough to see her children be grown. Her youngest child is in their fifties, so she had everything she wished for. We never asked her if she wanted to go into a nursing home. We just knew that was not her desire.”

This piece was republished North Carolina Health News.