Facing an influx of seriously ill Native American patients with COVID-19, the physicians at Albuquerque's University of New Mexico (UNM) realized they needed to boost their cultural competency.
To do that, they formed an educational collaboration with Gallup Indian Medical Center, an Indian Health Service (IHS) hospital located on the border of a nearby Navajo Reservation, to improve hospital care. Regular video conference calls focused on handling conversations about serious illness and end-of-life decisions and they also compiled an online compendium of related resources.
Since the Gallup hospital was well regarded for its palliative care program and had experience treating patients from Navajo and other tribes, UNM clinicians hoped to benefit from their expertise, said Lisa Marr, MD, division chief of palliative medicine at the UNM School of Medicine. “We wanted to make sure we were doing everything appropriately.”
In the U.S., nearly 7 million people are American Indian or Alaska Native, a diverse population that includes more than 550 federally recognized tribes. Yet Native American physicians are scarce. As of 2019, just 1.1% of medical school students described themselves as American Indian or Alaska Native, alone or in combination with other racial/ethnic origins, according to the Association of American Medical Colleges.
Native Americans also have proven to be particularly vulnerable to the novel coronavirus in part due to prevalence of certain medical conditions, such as diabetes, as well as the heightened contagion risk posed by multigenerational families living in close quarters. An analysis of COVID-19 cases in 23 states from Jan 31 to July 3, published Aug. 28 in Morbidity and Mortality Weekly Report, found that the rate of infection in that period had been 3.5 times higher among Native Americans than in non-Hispanic Whites.
Building trust and bridging gaps
To date, there's not much published research about how to provide optimal hospital care to Native American patients, including palliative and end-of-life decision making, said Dr. Marr. She helped author a literature review published in 2016 in the Journal of Palliative Medicine that looked at studies involving palliative and end-of-life care in Native Americans and found only 10 that met inclusion criteria.
Since patients and family members may speak a traditional language along with English, UNM hospital physicians have become sticklers in recent months about verifying language preferences up front. This step is particularly important amid the pandemic when physicians wear masks and family members aren't allowed into the hospital and must rely on phone communication, both of which can muffle clear speaking, said Naomi George, MD, MPH, an assistant professor in emergency medicine and critical care at UNM School of Medicine.
“It seems like a small thing,” she said. “But it wouldn't be uncommon before this change, even before COVID, that you may be fairly far along into some very challenging goals of care, end-of-life discussions only to find out that you and the team have been conducting it in the wrong language. And that that may be the root of some significant confusion.”
Given that each tribe in the U.S. is a sovereign nation with its own language and customs, it's important that hospital physicians approach Native American patients with respectful, open-ended questions, Dr. Marr said. She suggested questions such as, “I don't know a lot about your culture. Tell me what I need to know to provide you the best care. How do you want to receive information? How does your family make decisions?”
Physicians can familiarize themselves with the tribes living near where they practice, said Mary Owen, MD, director of the Center of American Indian and Minority Health at the University of Minnesota Medical School in Duluth. Read up on tribal history and learn a few words in the language, such as hello, thank you and goodbye, she recommended. It's also helpful to pick up on cultural norms, such as with some tribes, it's more traditional not to make eye contact.
But even so, physicians will have to clarify with each patient whether he or she follows traditional practices and what else the care team should know, said Dr. Owen, who is from the Tlingit tribe of southeastern Alaska.
“That's the key, right, that humility,” Dr. Owen said. “Walk in and say, ‘I don't want to make this any worse for you and your family. I want this to be as healthy an experience as possible given the situation. So, you guide me. If I'm about to do something wrong, help me out.’”
While there may be language and custom differences not just between tribes but within tribes or even extended families, broadly speaking, Native Americans place a strong value on the power of thoughts and words, the role of spirituality, and the bonds of kinship and group decision making, said Kathy Morsea, MD, a palliative care physician and medical officer at the Gallup Indian Medical Center.
Dr. Morsea, who is Navajo, or Diné as the tribe calls itself, suggested that hospital physicians share a bit about themselves when they walk into the room. For instance, describe your own racial/ethnic heritage and how long you've lived in the area.
Don't rely on the demographic summary in the medical record to provide the necessary information about spiritual practices, said Aaron Price, MD, also a Navajo physician and chief of hospital medicine at Tséhootsooí Medical Center in Fort Defiance, Ariz. One possible approach he suggested is to say, “I've noticed on your intake form that your religious preference is Catholic. Do you practice any other religions as well?”
As an example, if a Navajo patient practices traditional medicine, that can be relevant if treatment involves amputation, Dr. Price said. Patients may want an amputated foot or other limb to be preserved, so they can bury it at home, he said. “They basically feel like it's a part of them that has essentially died,” he said. “They feel like they are not complete without it.”
Also, Native Americans may participate in ceremonies that can lead to medical complications, such as severe dehydration following a sweat lodge ceremony, Dr. Price said. He described one patient whose kidneys had shut down for unclear reasons. Upon further questioning, physicians learned that he had participated in a ceremony involving an herbal combination that had been prepared incorrectly, resulting in a toxic reaction, he said.
Pay close attention to discharge, Dr. Price said. Check that the patient already has a local clinician and access to regular electricity and other services, such as reliable transportation for follow-up appointments during recovery, he advised. If a patient must return to the tertiary hospital for follow-up care, including for any appointments to affiliated clinics such as cardiology, it's important to alert the patient's IHS facility, Dr. Morsea said. Then the patient's primary IHS clinician can make the referral required for follow-up care to be covered, she said.
Improving serious conversations
As COVID-19 cases peaked last spring, UNM increased their pool of Diné interpreters from one to four, who were available around the clock, Dr. Marr said. Along with identifying from the start the preferred language for complex medical discussions, the UNM physicians were reminded to use plainer terminology when possible, such as “breathing machine” instead of “ventilator,” Dr. Morsea said.
A lot of the weekly video calls between clinicians at UNM and the Gallup hospital revolved around how best to conduct discussions about serious illness with Navajo patients, Dr. Morsea said. The Navajo people, she said, believe that “thoughts and words have power, and they can become reality.”
While Navajos recognize that nobody lives forever, she added, “At the same time, it's important to avoid the perception of wishing something bad on somebody.” What a non-Navajo physician might think to be an appropriate end-of-life conversation based on a poor prognosis could be perceived as squelching hope or wishing ill for a patient.
Instead, physicians can adopt a more indirect approach, using a third-person perspective, Dr. Morsea recommended. She suggested first asking if the patient wishes to hear the information, to have a family member present during the conversation, or to defer decision making to a family member altogether. Then the physician might say, “In people who have a condition like yours, we know that x, y, or z can happen. We are hoping the best for you and that this doesn't happen. But we want you to know so you can make the best decisions for yourself.”
When Esme Finlay, MD, first sees patients who lives on Navajo land and seem like they might follow traditional practices, she will speak more indirectly until she clarifies the patient's preferences for getting medical information. The family's decision-making process for a seriously ill patient also may unfold a bit differently than it typically does, said Dr. Finlay, who is an associate professor in the division of palliative medicine at UNM School of Medicine.
Some tribes have a matrilineal structure with an older woman in the family assuming a major role. Or the oldest son might be the decision maker legally but needs to consult numerous family members, who aren't always easy to reach given spotty cell and internet access in some regions.
“We need to respect the challenges that the family may have in terms of getting all the people who need to be involved together,” Dr. Finlay said.
As COVID-19 cases in the nearby Navajo land receded, the weekly calls between the collaboration members decreased by fall to every two weeks, but both sides plan to retain the connection through the pandemic and beyond. Dr. Finlay, who oversees the palliative medicine fellowship program, hopes that her trainees may one day be able to rotate through the Gallup hospital to learn more about medical care of Native Americans.
“I think COVID has really laid bare the challenges and the places that we need to improve to do better serving these families,” Dr. Finlay said. “We've been able, I think, to effect change that has made a difference for patient care.”