There’s No One to Talk to: Palliative Care and End-of-Life Needs in Rural Communities

Liz Anderson, DSW, LCSW

While working as a hospice and palliative care social worker in rural Virginia and North Carolina, I saw firsthand how important it was to show compassion and empathy when talking to persons with serious illness.  I learned that people in rural communities wanted to talk about their healthcare, but healthcare providers sometimes believed they did not. 

Bridging the Gap

I set out to understand how we could communicate better. I interviewed 33 persons with kidney disease, their providers, and caregivers.  I asked them:

“If a provider believed that you were really seriously ill, to the extent that you might not survive, how would you want them to have that conversation?”

We learned 4 important things about rural palliative care:

  1. The scarcity of resources in rural communities is real, especially related to transportation, education, healthcare resources, and staffing.
  2. Stereotypes of people living in rural communities exist, especially regarding educational attainment, and patients and caregivers believe that sometimes stereotypes lead providers to withhold information.
  3. People in rural communities want to be told the truth about their diagnosis and be told about all the options available to them.
  4. Patients and caregivers need to feel care and concern from their providers when they discuss palliative care. Patients and caregivers spoke of the value of being present, slowing down, and taking their time. Many patients and caregivers shared how body language, including sitting down, eye contact, gentle touch on the shoulder or hand, and tone can show care and concern. 

COVID-19 Challenges

The COVID-19 pandemic has made this type of communication even more difficult.  Though efforts to provide rural palliative care via telehealth were emerging before the pandemic, challenges were common in rural areas. 

Since then, progress has been made to bridge these gaps. Many of the techniques that patients prefer can be adapted for telehealth.  If you can’t physically touch a patient or family member to offer comfort, you can verbalize your desire, “If I was with you right now, I’d reach over and give you a hug.”

The Bottom Line

People in rural communities often lack access to end-of-life care, especially during the COVID-19 pandemic, but they are open to having conversations about palliative care and serious illness. 

When providers build these conversations on care and empathy; rural patients and family members become active members of the healthcare team, even in a telehealth environment.  

Partnering to Improve Care

Hospice Foundation of the Ozarks (HFO) is helping educate our community on ways to strengthen palliative care throughout SW Missouri. Through its grant program, HFO recently partnered with Washington University School of Medicine, St. Louis University and University of Missouri to develop education and bereavement support webinars for health care workers and community members.

Along with my research associate, Caroline Twiggs, I shared my research and information on challenges within rural palliative care during a recent webinar.

Below you will find a link to the recording of our presentation: “There’s no one to Talk to” – Addressing Rural Palliative Care.”

Link: https://wustl.box.com/s/3ilzr54wbtl3wfmov72ntjiukjz7se5p