Death isn’t often an easy topic to discuss, but Frances Nedjat-Haiem, a New Mexico State University social work associate professor, is working to change that.
After working in medical settings as a social worker for more than 12 years, Nedjat-Haiem saw many people, especially Latinos, not able to speak up for themselves when faced with a life threatening medical condition. And that experience inspired Nedjat-Haiem to start community conversations about topics such as the need for advance directives, which are legal documents that detail decisions about end-of-life care. Advance directives assist patients, family members and health care professionals when they are necessary.
“For the last 12 years I’ve been looking at aspects of culture, community, family issues and the barriers that limit end-of-life care discussions to understand how to improve communication so that it can happen earlier,” she said.
Currently, Nedjat-Haiem is working on a study titled “Improving advance care planning for Older Latinos with Advanced Cancers,” which is open to Latinos, over the age of 50, who have one or more chronic illnesses. The study was funded through a $70,000 grant from the Mountain West Clinical Transitional Research Infrastructure Network.
“The research indicates in terms of culture, Latinos may have high respect for their doctors, sometimes asking doctors to make decisions for them because they know what’s best,” Nedjat-Haiem said. “These are things that have to do with the culture and family values that impact decision making. It can also be about limitations or barriers to care, like not having preventive care or not having connections to a primary care doctor. These various gaps and limitations in treatment influence people when they enter the hospital setting. I see the conflict and crisis that can arise without having had an advance care planning discussion and needing to have already documented an advance directive under those crisis circumstances.”
Not only is Nedjat-Haiem conducting a study but she is also, along with graduate assistants, providing this information as a public health care message to local communities.
“Everyone has the right to understand how to make advance care planning useful, especially in English and in Spanish,” she said. “We are educating individuals and providing them with that education to document an advance directive and improve the quality of communication with their family members and providers.”
Nedjat-Haiem and her students have visited community centers, senior centers and assisted living facilities in areas around the region including Las Cruces, Rincon, Radium Springs, Organ, Butterfield, Chaparral, Vado and Anthony.
Krystyna Gonzalez, social work graduate assistant, said the rural communities have been very receptive to the presentations.
“This has given us the opportunity to spread the word out there and hopefully they will tell others and even if it’s a little bit of information, it will ultimately make that huge impact.”
When talking to people in the community, Nedjat-Haiem said she often finds two types of situations, one in which someone will be relieved to be able to share the story about their experiences with a family member. On the other hand, some people will simply keep silent and will not talk about the topic of dying.
“There are many people who may have not had any experience with talking about the possibility of dying and don’t want to know anything about it because it is so painful to talk about,” she said. That’s the key, if you have not had an experience in your life, it’s hard to begin to think about or talk about. So it’s not so much that death is taboo, but it’s an emotionally laden discussion that is hard to begin – but most important to start.”
“I thought that the medical setting would be the best place to provide patients with this education, but now that we have moved forward in this study, the aspect of providing a general education for everybody in the community is a better approach to advance care planning, advance directive education, and generally, just talking about this topic within the community.”
Alex Quintana, social work graduate assistant, said helping to correct misconceptions in the community about advance directives and the terms that are difficult to understand, such as a living will and health care power of attorney, is important work.
“I think it’s good that Latinos know more about it, because you never hear about it,” Quintana said. “It is a hard subject to talk about no matter who you are, what age you are.”
Nedjat-Haiem said progress is being made with federal policies that now allow physicians to be reimbursed for a visit to discuss advance care planning, but she believes more can be done to continue the conversation.
“I would like to see social workers be part of that conversation to help physicians, nurses, and the medical team, team being the optimal word, to work together to help families and individuals understand that this conversation isn’t just a medical conversation. It involves the psychological and social factors that people begin to think about in their lives and what’s most meaningful to them,” Nedjat-Haiem said.
“Oftentimes, physicians don’t have time for this in-depth discussion, that’s another reason why social workers, who can work in tandem with the medical system, help everybody with this conversation: families, individuals and providers in the system.”
Additionally, Nedjat-Haiem and Gonzalez were part of a team that recently published a paper in the American Journal of Hospice and Palliative Medicine about roles and responsibilities for initiating end-of-life care discussions with health care providers across disciplines titled “Exploring Health-Care Providers’ Views About Initiating End-of-Life Care Communication.”
For more information or to participate in the study call 575-646-8053.
Information from NMSU