Category: Guest Blogs
Can you see me?
As a child, I was taught that we dress in our Sunday best when going to the doctor. Why? Growing up, we were told stories of health care practitioners mistreating patients based solely on their appearance, or even the neighborhood they came from. So, if we wore our very best clothes, then maybe…just maybe…we might be taken seriously. We might be seen, heard and trusted as patients. And in turn, the likelihood of being mistreated subsided.
Each of us has, at our deepest core, the need to be seen and heard. We want our experiences validated, and we want to know that our voices matter. But what happens when you are not seen or heard? What happens when individuals, organizations, or even professionals don’t see you or don’t hear you?
In the last year, we have seen the centuries-long disparities in health care further exacerbated by the COVID-19 pandemic. We have watched in real time how the pandemic disproportionately impacted Black, Latino, and American Indian/Alaska Native people with significantly higher infection rates, hospitalizations, and deaths. What is clearer than ever is that health is foundational and anything that makes it harder for us to get healthy, stay healthy, or recover when we’re sick will inevitably widen the longevity gap.
Several months ago, my primary care doctor referred me to a specialist. The specialist was nearly two hours late for the appointment. When he finally entered the room, he quickly asked me a series of questions and, two or three words into my answer, he cut me off and told me what he thought was going on because he had “seen” previous cases like this. I barely got a word in. As he continued talking over me and at me, his phone rang. He picked it up mid-sentence and started talking about another patient to the person on the line.
Following their conversation, he returned his attention to me and picked right back up where he left off. The entire encounter was rushed. He asked the questions and seemed to have all the answers – all because two words into my visit he decided he’d “seen” this before (even though I was a brand new patient). At the end of the appointment, I did not feel seen. I did not feel heard. And I had no sense of trust. Competency and credibility are one thing. But there is no trust when there is a lack of empathy, communication, and eye contact. Patients can and sometimes do leave a doctor’s office scared of impending test results, or nervous about a diagnosis. No one should have to leave a doctor’s office feeling devalued, disappointed, angry, and discouraged.
It’s easy to look at disparities in health care as a crisis that is too big to solve. It’s not. Rather than thinking about overcoming these obstacles as a measure of success, we need to think about removing or preventing these obstacles in the first place. As health care professionals, simply taking the time to make patients feel seen and heard will build trust. You’re the ones on the front lines, seeing those who are hurting, listening to a list of symptoms, examining the situation, and solving a problem.
With trust, patients will have the ability to make the best decisions for themselves and their families. It won’t matter if physicians see us in our Sunday best or in an exam robe. If we foster trust, we’ll see each other as human.
Jean Accius, PhD is senior vice president for AARP Thought Leadership and International Affairs. His areas of expertise include aging, caregiving and long-term care policy.
We must create a safer and more equitable training environment for clinicians
During intern year I introduced myself to Mr. Smith (name changed), an older white man.
“Hello I am Dr. Adetoye. I will be taking care of you during this hospital admission.”
When the attending led us back to the room for team rounds, Mr. Smith addressed me as a nurse. The word hung in the air, but no one, including the white attending physician, addressed it. The intersectionality of being a woman and a woman of color meant that I was unsure which had triggered this comment, but I was uncomfortable either way.
I wanted to talk with someone who would understand. But in my large department, there were only two Black female physicians. I was a new intern, and I hesitated to burden them. I did not want to add to their ‘minority tax’ burden as the only Black woman on faculty. So, I kept it to myself.
In my last year of residency, I was working in a hospital in a predominantly white rural community. While writing patient notes, I overheard two men and a woman outside the room discussing whether it was appropriate for police to kneel on George Floyd’s neck when he was resisting arrest. They agreed it was, though the woman felt he should not have been allowed to die. When I stepped into the hallway, the two white security guards and white nurse that had been conversing stopped abruptly and watched me pass. I kept walking.
Down the hall, I passed a Black security guard and impulsively thanked him for being there. He said, “You are welcome, Doctor. Things are crazy out there. I will be here all night. If you need anything, do not hesitate to ask.” I thanked him again, slipped into my call room, and began to cry.
As the sole Black resident in this hospital, I was afraid and stunned. How could the staff that I relied on discuss the merits of murder? This time, I talked to my residency leadership. To my surprise and pleasure, they were concerned and responsive, and we worked on ways to improve the climate at the hospital.
We cannot assume that the day-to-day experience of seeing patients is uniform for all. We know there are better patient outcomes and patient satisfaction with racial/ethnic congruence between patients and clinicians. The programs that train young physicians must take the lead to create a safer and more equitable environment for all. This can be done by taking several steps:
- Understand the communities where trainees work, identify potential challenges, and communicate these with trainees.
- Make clear that discrimination will not be tolerated by the program.
- Educate staff and faculty about these experiences and teach them to recognize and address microaggressions and support trainees.
- Provide time for faculty of color to serve as mentors so minority trainees need not seek this on their own.
- Institutionalize these policies so they are not dependent on the good will of one individual.
We can do better. Increasing medicine’s physician diversity and supporting trainees with these difficult experiences will prepare us all to better care for the world’s diverse patient population.
Dr. Adetoye is a Clinical Lecturer in the Department of Family Medicine at the University of Michigan. She attended medical school at Michigan State University and completed a residency in Family Medicine at the University of Michigan.
Make changes together to build trust
Engaging and sustaining patient and community relationships in health care and health systems can prove challenging, but when health care is practiced in a culturally responsive manner, results can be both rewarding and beneficial to patients and clinicians alike. By utilizing a predetermined safe space for discussions and personal sharing, patients and relevant stakeholders (including front line staff and clinicians) are better able to capitalize on opportunities to listen and learn from one another.
Working together to develop and set terms of engagement can help frame how these discussions can move forward in an inclusive way – where all parties participate in a trust-building decision-making activity.
To facilitate such an activity:
- Discussion participants should determine ‘why’ a change is needed and ‘who’ should be invited to the trust-building decision table.
- Participants should discuss potential barriers to building trust in your health care setting using models where a person-centered balanced approach is taken, not a traditional hierarchal one.
- The room must have appropriate representation. Discussion participants should include historically under-resourced and diverse community members who can provide productive insights so all participants can benefit and learn something new.
- When reflecting on your organization or clinic and determining how to address equity and inequities, review internal anti-racism policies and brainstorm how to build trust within your care system. This is the time to reach out to your local community and invite community members as partners to create a care delivery model that works for them and for you.
Sacrifices will be made, and barriers will be dismantled, while paving relationships and determining together what trust in health care can be. Trust will likely be defined differently by each participant during your inclusive engagement activity. Make the time, be open for frank discussions, and open your heart to build trust and respect with each other. We are only humans after all.
Janice Tufte resides in Seattle and is a patient collaborator involved with health systems research, evidence production, clinical practice quality improvement and human readable digital informed knowledge generation. She recently co-authored a paper currently under review with the Journal of Health Design that discusses the importance of collectively designing research and is working with AcademyHealth’s Paradigm Project in developing a new research protoype. Learn more about Janice at www.janicetufte.com.
My doctor judged me by my appearance
In college, I took a sociology class on “Stigma and Social Deviance” and one of the assignments was called “Dress Different Day.” Each student was to spend an entire day in attire that would likely be stigmatized in our community. For example, my close friend Pam put a pillow under her sweater to feign pregnancy and walked around smoking all day. She’s since quit. The rule was no matter how uncomfortable you or others became, you had to keep the assignment a secret.
I raided my closet, borrowed an item or two from friends, and decided to spend the day in full-blown ‘club kid’ regalia. (Here’s a Pinterest page if you’re unfamiliar with this 1980s/90s NYC phenomenon.) To be honest, this was only a small enhancement of my typical going-out-to-the-club gear, but it was certainly new for my daylight hours!
After I laced up my platform boots, I realized I had my annual physical at my university’s health service that morning. So, I flung my tiny, spiky backpack over my shoulder and headed over. The waiting room was uncomfortable, but bearable – quick glances, furrowed brows. Triage went well; the nurse was unfazed. I was feeling OK until the doctor came in. She stopped short. She blanched. She looked at my makeup, my piercings, my pleather, and then she wouldn’t make eye contact again. She struggled with her questions. I could feel her discomfort as she examined me. Our mutual discomfort was palpable. I became angry – really angry.
Before I left, I broke character (and the assignment) and filled her in. I needed her to hear just how her behavior had affected me, that she was literal proof of the value of this assignment. Her response? “Oh, thank goodness. We just don’t get people like that here.” Did I mention this was NYC? They most certainly did see people “like that” every day.
It was 25 years before I engaged a primary care physician who wasn’t explicitly a member of the LGBTQIA community. My trust had been totally broken – and it’s not totally repaired.
Philip M. Alberti, PhD, is the Founding Director of the new AAMC Center for Health Justice and has spent the last 20+ years collaborating with local communities and the multiple sectors that serve them to build an evidence-base for effective programs, protocols, policies, and partnerships aimed at eliminating inequities in health.
The U.S. boasts some of the most advanced health care in the world. So why can’t some people find care in their own backyard?
Several years ago, while working in the safety net system for Louisiana, I received a call from the medical director at a small rural safety net hospital, who needed help to urgently transfer a patient for life-saving treatment.
The patient was a 45-year-old man who worked in construction for a small firm that did not offer health insurance. He was being treated for an infected heart valve when he suddenly developed altered mental status. A CT scan showed a subdural hematoma, a condition that is treatable with prompt neurosurgical attention. Regional hospitals, including some with available operating rooms and willing neurosurgeons, refused the transfer because the patient was uninsured. The medical director called 17 hospitals that day in a desperate attempt to transfer the patient without success. The patient died later that evening.
This occurred during the national debate about the passage of the Affordable Care Act (ACA). Several months after the patient’s death, I called his mother to ask if I could tell his story to demonstrate the hard consequence of being uninsured. She agreed (and subsequently testified at a state legislative hearing) but quickly became hesitant. “This is not about Obamacare is it?” she asked. “Because we’re against that.” The abhorrent performance of the health system earned her mistrust that day and that mistrust extended to the federal program that would have literally saved her son’s life.
While the number of similar cases is no doubt lower in the decade since the passage of the ACA (and the expansion of Medicaid by 38 states and the District of Columbia), 30 million people in the U.S. remain uninsured. Access to health care remains largely a factor of geography for many of them. In Texas, nearly one in four nonelderly adults is uninsured. A few large counties like Dallas support a robust safety net, while many smaller counties provide much less assistance.
Access to health care that varies by county highlights just how far we still must go to achieve equitable health care coverage in the U.S. A few weeks ago, I rounded with our gynecologic oncology team. I heard stories of uninsured women presenting with late stage cancer – the disease progressing while they attempted to find a provider willing to take on their care. They did not have access to services in their counties of residence outside of Dallas, and found care eventually through the Parkland emergency department.
This “out-of-county care” creates competing tension as the local newspaper attempts to quantify the costs and citizens’ groups question why Parkland provides unreimbursed care to residents of counties that do not contribute to that care. Still, in the absence of comprehensive federal or state policies, the solutions often fall to local providers to make it a priority to create more equitable systems of care so people with treatable conditions do not unnecessarily suffer for lack of access in the shadows of some of the most advanced health care in the world.
Fred Cerise served as the Vice President for Health Affairs at Louisiana State University and is currently the Chief Executive Officer at Parkland Health and Hospital System.
How do you trust a health system after you have seen its cracks?
My mother had a stroke at home during the first month of the COVID-19 shutdown. My sister and I, both physicians with more than 20 years of health care experience, were blindsided both by her stroke and the health care system’s response, which allowed her to fall through the cracks.
Prior to having a stroke, my mother developed sudden left leg weakness and fell repeatedly, which was new for her. Normally, a patient with these symptoms would be evaluated in the emergency room with a physical exam and a brain MRI for evaluation. After calling her neurologist, however, she was told to monitor her symptoms at home. We were told that her symptoms were likely due to a progression of another chronic condition.
We knew there was broad concern about COVID-19 exposure and her doctors were hesitant to bring her into medical facilities, but we called repeatedly with concerns about her symptoms progressing and hopes to confirm a diagnosis. Without a proper diagnosis, and because my mother was still experiencing symptoms, we decided to bypass her initial physician to obtain an MRI. The MRI concluded that my mother had in fact suffered a stroke, which required medication changes, lab monitoring, and physical and speech therapy.
While my family struggled with her clinical decline for many months, our trust in her health care system was broken after communication broke down. She felt alone in navigating her care—especially after multiple delays. My sister and I—working within our own health systems that were desperately trying to make rapid changes during the shutdown—could understand a level of uncertainty by her care team and the health care system. However, we believed that the system would have safeguards for emergent care. We were shocked by the lack of communication or acknowledgment of the delays, and the lack of help to navigate a path forward. We also could not help wondering: What if she did not have an accent when she initially called for help? Would she have had more success if she was not an immigrant and was more familiar with the workings of our health care system? I am not sure of the answer to these questions. However, I do know that even with two physician daughters empowered by education and training, my mother’s trust in health care was easy to break and will be difficult to regrow.
Dr. Reshma Gupta MD, MSHPM is a practicing internist, Chief of Population Health and Accountable Care at UC Davis Health, and part of the Population Health Steering Board for strategy across all UC Health campuses. She serves as a senior advisor within the Center for Medicare and Medicaid Innovation Primary Care First Program and a Co-Director of Costs of Care Inc.
How COVID-19 May Be the Catalyst We Need to Accelerate Trust in Medicine
Shantanu Nundy, MD will be joining us for our
September Building Trust Conversation. Register today.
A couple months into the pandemic, as my clinic settled into the new normal, my nurse urgently summoned me to see a patient in our drive-through testing site. I ran out to the parking lot to find a Pakistani gentleman in the front passenger seat, his wife in the driver’s seat, and his four daughters packed in the back—all alert and scared. He was coughing and wheezing and had an oxygen saturation hovering between 89% and 91%. After examining him, I concluded that he should go to the emergency room. While he didn’t quite need oxygen yet—as someone in his late 60s with long-term exposures to air pollution—he might have needed it soon, and I preferred him to be closely monitored in a health care facility.
His daughters’ eyes widened at the suggestion. New immigrants to the country, they were mistrustful of the government and hospitals. They were also uninsured and scared about what it would mean for their family’s finances. He asked if there was another way.
After stepping aside to think about their situation, I instructed the family on how to support and monitor his condition at home. I gave them a pulse oximeter that they could use to monitor his oxygen levels. I also instructed them to go to the emergency room or call us immediately if the levels consistently dropped below 88%. And finally, I gave them my personal cell phone number and had them text me to make sure they had the right number.
The next day or two were touch-and-go. They messaged me a few times about his lack of energy and fatigue. I called them once when his oxygen level was briefly low. But, we ultimately decided to keep him at home. And after a couple of seemingly very long days, he turned the corner.
Today the family still comes to see me in clinic and never hesitates to bring me sweets or other small tokens of their appreciation.
COVID-19 changed health care for the better
COVID-19 magnified many longstanding failures of the health care system. Perhaps none of these were starker than the deep lack of trust in doctors, health systems, and public health in general that had already been increasing in the past several years.
At the same time, I’m optimistic. COVID-19 has also accelerated changes to health care that I believe create a catalyst to rectifying this longstanding failure. As I’ve written in my book, during the pandemic, health care became more distributed, digitally enabled, and decentralized.
By distributed care, I mean that care will increasingly happen where health happens: at home and in the community. During COVID-19, we saw virtual visits skyrocket and home visits increase. We provided testing and vaccination at drive-through sites, churches, and football stadiums. By bringing care to patients rather than making patients go to care, we saw them on their terms. We met them where they were – not just physically but often emotionally as well.
Care also became digitally enabled. We finally recognized that the real role of technology in health care should be to increase the care in health care. Outfitted for the first time with a clinic iPhone, and already calling my patients over FaceTime and WhatsApp for their virtual visits, I found myself messaging with my patients between visits. I texted them about whether they picked up their medications yet, and they would message me to let me know that they tried picking up the medication, but that it cost more than $100 and they couldn’t afford it. Often these exchanges would end with warm appreciation and emojis – of smiling faces or namastes.
Care also became more decentralized. We put more resources in the hands of frontline care teams and patients. My safety net clinic received grants to support proactively calling people who needed the vaccine or canvassing door-to-door. We also empowered patients with equipment like the pulse oximeter we gave Mr. Salim, and we taught patients more about self-care – like how I talked to his family about how to support him and when to escalate care to an emergency room.
COVID-19 changes may catalyze greater trust
The “three Ds” accelerated by COVID-19 (distributed, digitally enabled and decentralized) map well to the “four Cs” the ABIM Foundation has developed for enhancing trust.
Competence. Often what doctors do seem to be a mystery. You don’t know what’s in their head or why they’re doing things. The shift towards decentralization, where patients are given more resources to make their own decisions, will help. Rather than “Hey, you need to go to the emergency room,” we’ll tell patients that we recommend the ER because their oxygen is low and medical guidelines say that oxygen below certain levels are dangerous. For my patient, this led to an acknowledgment that his oxygen level was on the border and that based on his preferences, there was an alternative option his family. This may be no more or less competent from my perspective, but from his family’s perspective, it became clear. I imagine that if his oxygen level did dip below 88% after a day or two, he would have a lot more trust that he truly did need to go to the emergency room, whatever the ramifications might be for his family.
Caring. Often the best way to be caring is to have empathy – to see and understand people as a whole person, and not just a patient in a gown. Virtual care and particularly video visits offer doctors a window into the home. Seeing patients in their own environment helps me understand who they are. Seeing the Pakistani gentleman with his wife and four daughters – something that is often hard for families to do in a clinic-based environment due to logistical and financial barriers – allowed me to tap into my own empathy in order to treat him. He was no longer a COVID-19 patient with respiratory symptoms. He was a father and a provider to the five women in the car with him.
Communication. Communication in health care is often very formal. There is a visit followed by weeks or months of silence before the next visit, and so on. This is not how we communicate with the people we care about. We send emails and texts and have phone and video calls. Digital communication can sustain and strengthen relationships that were originally built in-person. Knowing that he and his family could each contact me – that I was just a text away – was critical to their having enough trust to take care of their father at home.
Comfort. Care that happens increasingly at home and in the community is care that happens on patients’ own turf – sometimes literally. In an era when many lack access to medical facilities or are too mistrustful to step foot in one, the fact that care can start in their own environment can be a great source of comfort, particularly as relationships are still being built.
Many of the changes I described may reverse after the pandemic; the changes so far have been important, but small. COVID-19 is simply a possible catalyst. It is up to us to seize this opportunity to rebuild trust with our communities and our patients.
Upcoming Trust Conversation:
Sept. 16, 4:00-5:00pm ET
Fighting Maternal Health Disparities and Building Trust in the Pittsburgh Region
Building trust is more important and more challenging than ever as our nation attempts to address years of injustice and inequities in health care. Building trust can be awkward when professionalism confronts grassroots savvy, and building trust can be uncomfortable when there are imbalances of power in terms of resources, access to decision makers, and control of activities.
But we have to move forward, experimenting with and acquiring lessons in building trust along the way. For the past 30 years, the Jewish Healthcare Foundation (JHF) has offered a unique brand of activist philanthropy to advance health care innovation, advocacy, collaboration and education in the interest of better population health. Among the most concerning issues locally are the alarming maternal health disparities that disproportionately affect people of color – particularly in the Pittsburgh region. JHF and its nonprofit operating arm, the Women’s Health Activist Movement Global (WHAMglobal), made a commitment to improve maternal and child health outcomes in the Pittsburgh region and across the Commonwealth of Pennsylvania, while amplifying the voices of pregnant women experiencing inequity. To achieve meaningful legitimacy in doing this, we had to assemble the right team. This provided an early challenge.
JHF built philanthropic partnerships to fund grassroots perinatal community-based organizations at the forefront of fighting maternal health disparities. And in 2019, JHF joined the inaugural cohort of the Merck for Mothers Safer Childbirth Cities Initiative, receiving a $1 million, multi-year grant to foster local solutions to help cities become safer, more equitable places to give birth.
With funding from the Heinz Endowments and Merck, through Merck for Mothers, the company’s $500 million initiative to help create a world where no woman dies giving life, JHF established the Pittsburgh Safer Childbirth City Community Fund, which awarded grants of $20,000 to community-based maternal health organizations that are trusted in their communities and have a clear mission toward improving maternal health outcomes for those they serve. These grants ensured that grassroots organizations could establish the platform needed to continue their work and promote maternal health equity in our region. They also built support for our leadership role.
We have moved forward with some tensions, and we are learning to moderate these as much as possible. WHAMglobal convenes health care systems and stakeholders through learning collaboratives, and offers ample opportunities to air opinions. We also established and lead the Pennsylvania Perinatal Quality Collaborative, designing equitable maternal health solutions and directly addressing the implicit biases in maternal health care.
We established a Full Court Press initiative to further advance key policies related to perinatal community health workers and doulas, midwives and the critical Women Infants and Children (WIC) program. JHF organized the 2020 Pennsylvania WIC Stakeholders Collaborative Summit, which identified strategies to reinvigorate the program in Pennsylvania. And in 2021, building on years of work advancing community health workers and doula-work, WHAMglobal convened a statewide advisory group to create more equitable access to doulas and to develop a statewide infrastructure to support the work of doulas and perinatal community health workers in the state.
While we have celebrated progress in this work, there is still much to be done and resolved. Hopefully we can continue to move forward with open communication among those with diverse opinions, and trust in our efforts to allow all voices to be heard respectfully. The COVID-19 pandemic has exacerbated many of these disparities, and our national response has demonstrated that many gaps remain to be filled. We believe that the most equitable solutions will come from respecting the patient experience of historically marginalized voices as we advance better program design, attract philanthropy and pursue policy reforms.
Karen Wolk Feinstein PhD is president and chief executive officer of the Jewish Healthcare Foundation (JHF) and its three operating arms, the Pittsburgh Regional Health Initiative (PRHI), Health Careers Futures, and the Women’s Health Activist Movement Global (WHAMglobal). Appointed the Foundation’s first CEO in 1991, she has made JHF and PRHI into a leading voice in patient safety, healthcare quality, health policy, and workforce issues.
Ensuring Equitable Access to Clinical Trials
Although many at UT-Southwestern worked together to reduce barriers to opening clinical trials related to COVID-19, obstacles to implementing still existed. To provide access to potential therapeutic medications through a clinical trial, we needed to obtain consent from the participant. We usually do this through an in-person process with the investigator, coordinator, and the patient, but we could not enter patients’ rooms because there was not enough personal protective equipment (PPE). We received permission to obtain electronic consent by DocuSign, a process ideal for those who have an email and cell phone.
In our county hospital, Hispanic patients accounted for 90 percent of the admissions for COVID-19, and often did not have cell phones or an email address. Instead, we used the hospital’s tubing system to send a paper copy of the Spanish-language consent form to the nursing station. The patient’s nurse could pick up the paperwork there, and bring it to the patient to read. We employed bilingual coordinators to help facilitate coordination and translation of complex medical information from the investigator to the patient.
After explaining the study and obtaining permission to proceed, we then obtained a digital signature by DocuSign. We had the patient’s nurse take a donated iPad into the room of the patient, and sent the DocuSign document to an email account we created for the study. The coordinator would then walk the patient through the process of signing their name on the consent form on the iPad. After the investigator signed the consent, DocuSign would then send a completed signed copy to the coordinator, who printed the written consent and scanned it to the patient’s record. Through this elaborate, time-consuming effort, we were able to provide access to clinical trials to uninsured Hispanic patients who faced both language and digital barriers. We promoted health equity to uninsured members of the Hispanic community who were hardest hit by the COVID-19 pandemic in our region.
In our University Hospital, we were able to go to patients’ rooms (either in the ICU or on the floor) but not enter them, due to PPE shortages. If the patient did not have an email, we could communicate by phone or a video conferencing application on the hospital’s computer system. Together with the nurse, who was in the room with the patient, we explained the study, answered questions, had the patient sign their consent, and the nurse sign as the witness. The nurse then brought the consent to the window or door so a member of the research team could take a photograph. Subsequently, we obtained iPhones, which the nurses used to take a picture of the consent and upload it directly into the chart. In those studies that required a physical exam, the nurse was able to record heart and lung sounds through a Littman stethoscope, which the investigator listened to from the hospital’s computer system. We have used technology and teamwork to find innovative ways to perform research procedures during this unprecedented time. We have tried to build trust with our patients and our staff by working with them to provide access to therapies for COVID-19.
Mamta Jain is a board-certified Infectious Disease specialist and Professor of Medicine at UT Southwestern Medical Center. Her goal is to provide access to novel therapies through clinical trials. She has focused her efforts in medically underserved populations to help provide access to treatment for infectious such as HIV, hepatitis C, influenza, and now COVID-19.
Trust: Too Much, Too Little… Just Right
I trusted the science but this time I had a hard time believing it. It was with great skepticism that I read in numerous articles that 50% of patients were not taking their medicines as prescribed. I thought: “Not my patients – my patients trust me, they’ve known me for decades, they know I care.” Having the honor of practicing in the same neighborhood on the west side of Chicago for more than 30 years, I was proud of the relationships I had developed with patients.
When I assessed my patients’ adherence as part of my evaluations, I was always met with an affirmation that they were indeed taking their medicines. So I decided to test the literature. I would ask my patients if they were really taking their medicines as they said they were. Repeatedly they answered yes.
Too much trust in my effectiveness in conveying the importance of my medical recommendation was the problem. What was I missing? Were my patients truly that different from the rest of the nation? As I reflected, many of my patients’ outcomes were not at goal despite being on appropriate effective therapies. Could I be wrong? Could my patients be hiding their true medication behaviors? How was I to find out?
With some trepidation, I changed my approach. I shared with a patient named Calvin: “Your blood pressure is still not under control, yet you tell me you are taking your three medicines. I have read that many patients—almost half—do not take their meds as prescribed. Are you really taking your three meds every day?”
He looked at me and paused, clearly hesitant to respond. Encouraging him to share his true medication-taking behavior, I promised not to admonish him if he was not taking his meds as prescribed. “But the last time I told you I wasn’t taking them, you yelled at me!” he said.
I had too little trust in my patients. I only uncovered their non-adherence after I changed my attitude and began to trust that patients were making rational decisions in not taking their medicines. Only after thanking them for sharing, and often apologizing for my past admonitions, could we uncover their individual reasons for non-adherence.
Much to my surprise, their reasons for non-adherence were myriad and quite rational. Only when trust was just right could we move forward and address these reasons. As adherence increased, blood pressures and sugars began to drop and multidrug therapies were deescalated as patients were controlled with fewer drugs taken regularly.
Dr Brown is a practicing internist in Chicago. She has served on the ABIM Board, as Governor for the ACP and currently as Director of Practice Redesign at the AMA. From her decades of experience she has found trust between physician and patient to be a necessity to delivering effective patient care.