HEALTH CARE DISPARITIES ARE NOT LIMITED TO THE FEW

Physicians respond to lessons learned from Listening Tour

In October 2020, the CHEST Foundation launched a Listening Tour in five cities across the country to uncover health disparities in the United Stated from the patient’s perspective. With more than 25 patient participants, more than 50 physician participants, and various attendees from the community-based organizations, media and local government, the Listening Tour brought to light some glaring inequities.

In recent issues of Donor Spotlight, we focused on the patients’ stories. Now we turn to the physicians’ experience of the Listening Tour and what they learned from the patient’s struggles to get adequate health care. Some physicians felt they were aware of current health care gaps, but almost all agreed that hearing so many similar stories was a clear call for action.

---

UNCOVERING THE PROBLEM

In a recent media statement on racism and health, the CDC notes that systemic inequalities result in “structural barriers that impact racial and ethnic groups differently to influence where a person lives, where they work, where their children play, and where they worship and gather in community,” and that “these social determinants of health have life-long negative effects on the mental and physical health of individuals in communities of color.”

Sitting across from a single patient hearing that they cannot afford their medication or do not have a primary care doctor they can trust can feel like an isolated incident. When many patients tell the same story, the depth of disparities in the system, leaving both individuals and communities without adequate health care, becomes harder to ignore. For some of the physicians who participated in the Listening Tour, it was an emboldening experience.

OBSERVING EACH PATIENT

Rita Castro, of San Antonio, struggles with access to health care because of her extremely limited vision. With 17 different doctors needed to treat her various conditions, getting to appointments is a constant battle for Rita. Rushed and overburdened clinic staff does not have the time necessary to assist her with simple tasks like filling out paperwork. Rita is frequently sent home with physician orders that she cannot always adhere to, such as testing her own blood, because of her limited vision.

“While I’ve heard stories like this before, it was one of the first times I found myself listening for an extended period of time to someone’s firsthand experience of what was happening,” says Stephanie Levine, MD, FCCP. “It was impactful to hear how much she was struggling with accessing her care — even just getting to her appointments — something so relatively small that could make things so different in her life.” After hearing Rita’s story, Dr. Levine says that she is now making it a point to listen for the next Rita.

TAKING ACTION

Based on Rita’s experience, the CHEST Foundation started a pilot program to fund microgrants to those who need it the most. The grant assists with coverage for medical equipment, transportation, and access to technology for those living with lung disease and other medical complications. Rita Castro was the first recipient of the microgrant to provide the assistance that was desperately needed.

“It was impactful to hear how much she was struggling with accessing her care — even just getting to her appointments — something so relatively small that could make things so different in her life.”

– Stephanie Levine, MD, FCCP

In addition to providing financial assistance, physicians shared other ways they are beginning to help elicit change. Janet Maurer, MD, MBA, FCCP, says that one way to begin to change these disparities is through education. As a professor, Dr. Maurer exposes her students to the issues within health care to better prepare them for what they will experience when practicing.

“I try to get the students to understand how difficult it is for some people to access appropriate care. In medical school, we really try to teach students to be aware of this and to try to do what they can to modify the disparities and, hopefully, in the future to help create change,” said Dr. Maurer, who joined the Southwest Listening Tour.

Keith Mansel, MD, a participant on the Jackson, Mississippi call, noted that a key action physicians can take to help combat disparities is showing respect to their patients. “Some of these issues are bigger than what I can provide at the patient’s bedside, but what I can do is treat everyone I see with respect, with kindness, and with compassion,” says Dr. Mansel. “The one thing that came out of the Listening Tour is the importance of developing trust and that happens in the relationship part of the encounter with the patient or the emotional part, not just the cognitive part.”

ASKING THE RIGHT QUESTIONS

Given the limited time physicians have with their patients, building trust can be a challenge, so it is vital to use the time physicians have with their patients to learn as much as possible. Ada Arias, MD, who participated in the Chicago Listening Tour, advises that physicians focus on quality over quantity when meeting with patients.

“You don’t have to spend a lengthy amount of time, but the time you spend with the patient should be meaningful,” says Dr. Arias. “You, the doctor, have to feel really interested in knowing what’s going on with the patient — not just the patient as a number to give a prescription and get out — but really what’s happening to them with a real caring attitude.”

Dr. Arias also advises that physicians focus on open-ended questions that allow for insight into the patient’s life:

• Who takes care of you at home?
• Who do you live with?
• Who takes care of you when you’re sick?
• Do you understand your disease?
• If you get sick and an emergency happens, who brings you your medication?
• Do you remember to take it on your own?

While asking the right questions and listening to the response is vital, patient care is about more than just hearing the words. “It’s so important to listen to what patients are experiencing and to listen to their voice, but even more, it’s important to listen for the silences because the silences tell you volumes,” says Negin Hajizadeh, MD. “Our job as a doctor is not just seeing the patient, making the diagnosis, and writing the prescription, and I think almost all of us know that.” By sitting in the silence, physicians can read body language and get a better sense for what the patient might not be saying.

SEIZING EVERYDAY OPPORTUNITIES

When Justin Fiala, MD, was taking an Uber home from a shift in a Chicago hospital, the driver was prompted to start a conversation when he saw Dr. Fiala’s scrubs. The driver said he is living with severe asthma and admitted that medication was frequently unaffordable and asthma flare-ups often resulted in loss of consciousness. Dr. Fiala reflected on the risks this presents, knowing very well that the driver may not wake up after one of these episodes.

“Arguably, shortness of breath is one of the most uncomfortable and anxiety-provoking sensations within the human experience,” says Dr. Fiala, who recently learned about the Foundation’s Listening Tour. “To that end, the only way that most of us who have never experienced it on a prolonged basis can understand it is through the narrative of our patients.”

“It’s so important to listen to what patients are experiencing and to listen to their voice, but even more, it’s important to listen for the silences because the silences tell you volumes.”

– Negin Hajizadeh, MD

From Dr. Fiala’s perspective, something like a listening tour – that focuses on the importance of the patient narrative, especially those patients from the most vulnerable subsets of our population — is incredibly important, because what it helps to convey is that this is why we do what we do, and this is why what we do is so important.

Through the Listening Tour, a lot of issues were uncovered, but this initiative is far from over. Listening is the first step of the process, and reflecting on what was learned through the Listening Tour is the next step toward combating these issues.

We thank all the physicians and patients who participated in the Listening Tour for their willingness to speak honestly and openly. To help make a difference in the lives of patients like Rita, read more about the pilot grant program in this issue of Donor Spotlight.

OTHER ARTICLES IN THIS ISSUE

---

The Donor Spotlight Summer 2021 issue is also available as a PDF DOWNLOAD THE PDF »