By Elizabeth Akincilar, PHRC Cofounder
The last several months have undoubtedly tested the resilience of the world. The coronavirus has caused severe economic hardship, serious emotional and psychological stress, and most importantly, and devastatingly, significant loss of life. In addition to the seemingly endless challenges caused by the pandemic, in May, all within roughly one week, our country witnessed the senseless murders of three Black Americans, George Floyd, Breonna Taylor and Ahmaud Arbery. Once again, our country has been painfully reminded of her deeply ingrained racial disparity and inequality. Let this be the last reminder we, as a country, need in order to make real and lasting changes to end discriminatory injustices and move towards racial and ethinic equality.
As part of our nation’s healthcare system, we must take responsibility for our role in the racial and ethnic injustice and discrimination that is crippling our country. We must commit to improving communication and quality of care and rebuilding trust and relationships for nonwhite populations. As with any challenge, the first step is identifying our mistakes and shortcomings, then educating our community, and finally creating a plan to make lasting changes within our healthcare system.
The Disparities
The Institute of Medicine’s 2012 National Healthcare Disparities report showed that discrepancies in treatment exist, with Black patients receiving worse care than white patients. In 2015, Hall et al conducted a broad review of the literature on implicit racial bias among healthcare providers and healthcare outcomes such as patient adherence, patient provider communication, physical and mental health outcomes and provider decision making. The authors found consistent evidence that provider implicit racial bias has a negative impact on patient–provider interactions. A 2017 study showed that in the office, physicians are more verbally dominant and engage in less patient-centered communication with Black patients than with their white patients. Patient-centered care is care that is respective of and responsive to patients’ needs, values and preferences.
After reviewing the literature on racial and ethnic discrimination within our healthcare system there are a few issues that dominate the research. Those issues are mistrust of healthcare providers, lower utilization of healthcare services, and lower healthcare satisfaction.
To be clear, there is a difference between a lack of trust and mistrust. Trust in healthcare providers is the belief that the provider will act for the benefit of the patient. Medical mistrust is not simply the absence of trust, but the fear that your healthcare provider is not caring for you with your best interests in mind. The mistrust that nonwhite populations feel towards the healthcare system is associated with lower healthcare utilization and lower healthcare satisfaction. Healthcare satisfaction is when we evaluate our past experiences with healthcare providers or the healthcare system. Both trust and satisfaction are essential for establishing and maintaining lasting relationships with healthcare providers to promote beneficial patient-provider interaction, continuity of care, and adherence to recommended therapies.
The Causes
The mistrust that nonwhite populations feel towards the healthcare system is due, in part, to historical events. The Tuskegee Study of Untreated Syphilis in the African American Male was a clinical study conducted between 1932 and 1972 by the United States Public Health Service. The 40-year study was a major violation of ethical standards. Researchers knowingly failed to treat participants appropriately after penicillin was proven to be an effective treatment for syphilis and became widely available. Moreover, participants were kept in the dark of the study clinicians’ true purpose, which was to observe the natural course of untreated syphilis. This study led to major changes in US law and regulations around protecting participants of clinical studies. Now studies require informed consent, communication of diagnosis, and accurate reporting of test results. Unsurprisingly, the revelations of the gross mistreatment under the Tuskegee Syphilis Study are believed to have significantly damaged the trust of the Black community toward the healthcare system that persists today.
In 2017 Cuevas et al utilized focus groups to uncover what European Americans’, Latina/Latino Americans and Black Americans’ experiences and preferences were when interacting with medical providers. Open communication, listening, and valuing the patient’s perspective on the treatment regimen was expressed as important by all three groups. However, there were some differences between the groups. Some of the Black patients/participants felt it was important for the clinician to consider their racial/ethinic identity when working with them and formulating a treatment plan. Additionally, they reported that before they saw the clinician they had negative experiences, such as long wait times and cold or business-like interactions from non-medical staff in the waiting room. Black patients/participants also reported unfair treatment from their clinicians, such as not prescribing needed pain relieving medications because their clinicians viewed them as drug users. They also reported discrimination based on the type of insurance they had or lacked. They felt they would have received better treatment if they had better insurance coverage.
It should not come as a surprise to anyone that an ethnic group would not trust, and in particular mistrust, a system that has a history of intentionally causing them harm, as was the case in the Tuskegee Syphilis Study, and then continues to mistreat them from the moment they step into a clinician’s office until the moment they leave.
The Consequences
Medical mistrust has been shown to negatively affect several preventative health practices, particularly among Black people, which include colorectal cancer screening, mammography behaviors and HPV vaccinations. Additionally, Black men with higher levels of medical mistrust were more likely to delay blood pressure screening. In Obstetrics, there are stark differences in the healthcare experiences of pregnant Black women versus non-Black women. A 2018 study showed that Black women are less likely to get clinical advice and support to support a healthy pregnancy. Black women are less likely to receive antenatal steroids, tocolytic medications, and are more likely to have Cesarean sections. Black women often describe their perinatal period interactions with their clinicians as disrespectful and stressful. A recent study by Johnson et al showed racial and ethnic disparities in the experience, assessment and treatment of postpartum pain. Another study in 2019 by Badreldin et al found similar results. They concluded that Hispanic and non-Hispanic Black women experience disparities in pain management in the postpartum setting. Among Black women with breast cancer, feelings of medical mistrust are more prevalent in Black patients with breast cancer versus white patients with breast cancer. In fact, Black patients with breast cancer suffer from higher rates of recurrence and mortality versus non-Black women with breast cancer. An analysis of data from 350 U.S. Emergency Departments between 2006 and 2010 found that nonwhite patients presenting with abdominal pain were 22% to 30% less likely to receive analgesic medication and 17% to 30% less likely to receive narcotic analgesics compared to white patients. Nonwhite patients were also more likely to have longer wait times and were less likely to be admitted.
The Way Forward
A recent study found that a patient-centered approach to cultural competency training, responsive to individual patient concerns, coupled with a general knowledge of cultural context of major population groups being cared for, may reduce disparities in the quality of care patients receive. Additionally, increasing workforce diversity and collaborating with interpreters and cultural brokers may facilitate these efforts.
In their study, Ramos et al suggest that eHealth, such as virtual environments and avatar-led videos, could allow people to maintain anonymity and receive social support and avoid stigma, discrimination and lower health care utilization. They suggested this may be particularly helpful for those that are people of color in the LGBTQ community. The study also suggests that researchers and clinicians take active steps to dismantle mistrust and build trust, such as using community workers, faith-based organizations and hiring health staff that reflect the population.
Our Action
We recognize that racial bias, either explicit or implicit, negatively affects our delivery of healthcare. For the individual, we encourage our healthcare community to self-reflect to explore and become more aware of their existing biases. For a research based institution, we encourage more interdisciplinary research on understanding and eliminating racial and ethnic disparities in medical care. For medical educational institutions, give your students the skills needed to engage in patient-centered communication. For the clinician, commit to effective communication with each and every patient, forming an alliance with your patient, which will improve patient understanding and build trust.
At the Pelvic Health and Rehabilitation Center, we are committed to taking these immediate steps to engage in self-reflection, facilitate learning and growth and support charitable groups to work towards the end goal of racial justice and equality.
- During our weekly staff meeting we will incorporate an educational component, led by one of our staff members, to improve our own awareness, understanding and role in racial injustice.
- We will create an ongoing company-wide resource list of literature, podcasts, charitable groups and/or organizations, and local events in each of the three geographic areas we live in (Northern California, Southern California, New England), that support racial justice and equality.
- We will match each PHRC staff member’s voluntary donation to the organization of their choice that furthers Black social justice causes.
We welcome your thoughts and suggestions, please let us know in the comments section below!
FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.