Ms. Rosemary (name changed) was a young woman from El Salvador who died at 33 years of age. She had limited access to education in El Salvador and immigrated to the United States. She had two school-aged children, one of whom had special needs requiring dedicated medical and psychosocial care. She lived near two close siblings and her mother. It was after her death that our medical team learned of the immense outpouring of support from her religious community, sponsoring a funeral procession and working to return her body to El Salvador. We share our journey in partnering with her and understand the hindsight lessons of missing both patient and community engagement in her care.
Our healthcare system met her as a young 25-year-old woman with nephrotic syndrome and biopsy diagnosing IgA nephropathy. The Access Partnership (TAP), a system-wide charitable program facilitating subspecialty care for uninsurable persons, allowed her regular nephrology care, but was unable to deflect medication costs and accessibility to immunosuppressive therapies. In hopes of managing her IgA nephropathy, she was trialed on high-dose steroids among other sponsored therapies. She suffered seizures in the setting of hypertensive emergency which she attributed to the steroids and so she self-discontinued them. This is one of many circumstances with her having limited understanding to medically recommended therapy. Her IgA nephropathy persisted thereby provoking refractory hypertension, end-stage renal disease, and a need for dialysis in the last year of her life.
Her last months were spent in and out of the hospital because of her progressive illness, with several unfortunate complications. She suffered a type B aortic dissection requiring surgical aortic repair. Diagnostics in this setting then revealed several cerebral aneurysms, for which she later underwent a planned craniotomy. Following this craniotomy, she suffered a stroke, non-convulsive status epilepticus, and septic shock with Clostridioides difficile colitis requiring operative intervention. At 33 years old, she suffered a cardiac arrest in the operating room and without successful resuscitation.
Approaches to Bridge across Barriers in Her Care
Ms. Rosemary’s presentation held competing demands between her significant medical maladies and challenging social circumstances. Her presenting symptoms and vitals most often made for her medical doctors to give priority to urgent clinical matters addressing her hypertension and worsening renal disease. The time desired to utilize motivational interviewing and to engage deeper in her concerns and priorities was overrun by clinical urgency to decide between ongoing outpatient management or need for emergent referral to the emergency department. Challenges identified to optimize clinical management included costs, language discordance, limited literacy, and concerns for depression.
Costs considered included clinic visit copays, medication, transportation, and time lost at work. Initial care was in a community clinic with a sliding scale program, where she qualified for the lowest cost per visit of $25 plus costs of laboratories. Subspecialty visits were subsidized completely as part of TAP. Medication costs varied, depending upon the pharmacy discount programs and the ability to document income. Applications for these pharmaceutical company programs required extensive outreach on the part of our social workers and staff, alongside the patient commuting to clinic in person for provision of needed documentation and signatures. Transportation costs were mitigated when receiving care at the clinic site within walking distance; yet for much of her follow-up at a separate campus, transportation costs rapidly accumulated. Local private taxis were preferred by the patient due to flexibility, language access, and safety. Private taxi trip costs were between $20-50 and depended on the time she waited to see a clinician or needed to return to work. Cost of using public transit is monetarily lower, but with unreliable inconsistent schedules and fear of safety. This patient with refractory hypertension because of her untreated IgA nephropathy was often requested to attend regular follow up appointments every 2-4 weeks in her general internal medicine clinic care, in addition to her regular nephrology follow-up recommended monthly to every three months. These frequent visits add-up in cost.
Language discordance presented regularly as this patient was solely Spanish-speaking and her highest education was completing the first grade. Limited literacy further exacerbated communication barriers even with priority given to partnering with qualified bilingual providers in both her primary care and subspecialty care. It is important to note that although the patient had access to bilingual providers, her care was within a larger health system. For example, regarding access to prescriptions medications, social work paid for them at times, but the system required the patient to pick them up from the pharmacy within the system. The pharmacy staff do not often use interpreters and would have difficulties finding the patient in their system, which resulted in the patient having to find the social worker to advocate on her behalf. This created a delay in access to medications. Frequent renewals to programs, sliding fees, and appointment management, required organizational skills that without literacy make it challenging, if not impossible, to keep up. All of this combined for her need to work to meet basic needs as challenging for patient to manage together.
Despite our team’s work to provide both language and culturally concordant care with the synergistic support of our physicians, social workers, and office staff, barriers remained with this patient’s limited numeracy and inconsistent ability to read prescription bottles. Approaches taken to address this barrier included using numbers on the top of the prescription cap to signify how many times a day she would take said medication. Although atypical to do, we attempted prescribing her medication in a way that every medication had the same number of pills to take at a time. For example, when she was prescribed labetalol twice a day, her losartan 100mg once a day was converted to 50mg twice a day to minimize confusion.
The efforts described above to bridge the therapeutic relationship with Ms. Rosemary continued falling short, with questions of depression. Her affect was routinely blunted, although the Patient Health Questionnaire (PHQ-9) survey identified only mild depression and patient denied having concerns with her mood or outlook. During her hospitalization for dialysis initiation, a friend remained at her bedside with frequent remorse expressed at wishing to have been engaged in her care earlier, to have supported her regular intake of her medications, with hopes of having helped prevent her fate to be dialysis dependent. During her last weeks of hospitalization with complications following her craniotomy, her mother and siblings were actively engaged in discharge planning details, and, ultimately, discussions on goals of care. Following her death, a large community surrounded the family with support.
Ideas for Improvement of Care
We need to continue to advocate for system approaches to greater accessibility and equity of care to vulnerable communities; yet, we must remain integrated into the individual facets of relationship building and flexibility to connect with our patients and align with their identified priorities. Community support to help not only translate across language but also translate across experiences and values can be accessed within an interprofessional team approach as we worked to do. Our medical team often required giving priority to urgent clinical assessments; our support staff further provided support in the recommended follow-up plans. Addressing the medical urgencies cannot be done successfully without the wraparound support in collaboration with our social work and staff colleagues.
Despite our efforts as described above, we struggled to engage with this patient. Would this greater engagement of her community have provided a different outcome? Community health workers (CHW) or patient navigators are inherently from and within the patient’s community. They bring an unparalleled ability to meet the patient where they are physically, socially, psychologically. For Ms. Rosemary, we are left wondering if a CHW would have been able to engage both the patient and her community better than our efforts. A CHW may have learned of her church community or the individual friends in her life and then invited them to join in her medical visits as additional supports. This support could have facilitated the patient’s limitations in understanding her medications and difficulties with medication compliance. Even in our dedicated efforts to bridge across the many cultural, language, and socioeconomic barriers, we are reflective at our failures to effectively engage with Ms. Rosemary. It is critical to patients that we work in interprofessional settings, and these teams truly be as fully inclusive as possible; ours was without a CHW—a role meant to target patient engagement.