When Healthcare Falls Short: A Social Worker’s Perspective on Care Coordination, Accountability, and The Need for Change

For more than a decade, I have worked within healthcare systems before becoming a clinical social worker. Throughout my career, I have supported patients facing mental health challenges, chronic illnesses, social service needs, dual diagnoses, and life-altering medical events. I understand the realities healthcare professionals face every day, including staffing shortages, increasing patient volumes, insurance requirements, and administrative burdens. I also understand what quality healthcare should look like. Quality care extends beyond medical diagnosis and treatment. It requires accurate documentation, meaningful patient education, interdisciplinary collaboration, effective care coordination, linkage to services, and support for both patients and caregivers. These are not optional services; they are essential components of safe and effective healthcare.

My first experience as a healthcare advocate for a family member began in 2021 when my 22-year-old son was involved in a devastating three-car accident caused by an impaired driver who was reportedly over the legal blood alcohol limit. The collision resulted in the loss of one life. To this day I vividly remember the cries of the victim's sons at the scene. My own son sustained multiple traumatic injuries, requiring an extended hospitalization in the trauma unit, numerous surgeries, prolonged bed rest, intensive rehabilitation, and eight screws and a rod placed in his hip. He ultimately developed sciatic nerve damage that resulted in foot drop and required an additional corrective surgery. Throughout his hospitalization, the trauma surgeons and nurses responsible for his acute care provided exceptional treatment. Their expertise, clinical decision making, and rapid interventions saved my son's life, and for that I will always be grateful.

However, once the immediate medical crisis had stabilized, I experienced firsthand how gaps in care coordination and discharge planning can place significant burdens on patients, families, and caregivers. As my son's primary caregiver there was no comprehensive review of the durable medical equipment he would require at home. There was no coordinated discussion regarding medication management, and no clear plan outlining how his transition from hospital to home would be safely executed. I learned of his impending discharge through my spouse who was visiting him while I was briefly away from the hospital to rest. When I contacted the hospital seeking clarification, I was informed that my son no longer met criteria for acute hospitalization and that a doctor’s order was written in his chart for discharge. 

I understood the clinical realities of hospital utilization and discharge requirements and was happy that his medical status had improved to a point where he was able to begin his recovery journey at home. However, I also understood that a safe discharge involves more than determining whether a patient still requires an inpatient bed. It requires ensuring that the patient and family caregivers specifically have the resources, education, equipment, and support necessary to safely manage care after leaving the hospital.

My son was being discharged unable to independently meet his own basic needs. He required specialized medical equipment, extensive assistance with mobility, medication management, and ongoing clinical follow up. Yet, much of the responsibility for coordinating these services fell to me. Rather than participating in a coordinated discharge process, due to receiving excuses from the assigned social worker regarding the discharging planning. I found myself securing physician orders, communicating with insurance providers, arranging durable medical equipment, coordinating pharmacy needs, and ensuring appropriate pain management plans were in place before he arrived home.

What struck me most was that I was able to navigate these challenges because of my professional background in healthcare and social work. I understood insurance systems, medical codes and terminology, care coordination, and case management processes. I knew where specific documents needed to be submitted and how to advocate effectively when concerns arose. This experience forced me to ask a difficult question: What happens to families who do not have healthcare experience? What happens to caregivers who do not know how to navigate insurance requirements, advocate for equipment needs, challenge incomplete discharge plans, or identify gaps in care coordination? My son's recovery was ultimately successful. Today, he is thriving and slowly getting back to living a full life. I remain grateful to his trauma surgeons and trauma care nurses who truly embraced him and provided ultimate medical care.

However, his positive outcome was influenced not only by the exceptional trauma care he received, but also by relentless advocacy and extensive coordination efforts that I was able to manage prior to his discharge. His experience reinforced my belief that quality healthcare does not end when a patient is medically stable. It extends into discharge planning, caregiver inclusion, communication, and care coordination areas where healthcare systems must continue to improve to ensure that patients and families receive the support they need during some of the most vulnerable moments of their lives.  Upon discharge I was now faced with navigating the Victim’s Advocate program that operates under the Division of Victim Services. With the assistance and support of one of my professional peers, we were able to navigate the system and receive the services my son needed.

Who would think three years later I would be back in the caregiver seat and supporting my mother during her battle with cancer. Her diagnosis came after she fainted at home and complained of pain on her right side, prompting me to take her to the emergency department, where a significant tumor was discovered. The diagnosis was devastating, but my immediate question was simple. How did we get here? My mother was highly compliant with her medical care. She attended appointments regularly, followed medical recommendations, and maintained ongoing relationships with her primary care and cardiology physicians.

Yet in the months preceding her diagnosis, I observed and questioned concerning changes related to unexplained weight loss, enlargement within the parotid lymph node region, and other symptoms that were repeatedly attributed to allergies or sinus-related issues. My parents have always received support with medical routine medical visits prior to my mother’s cancer diagnosis. As both her daughter and caregiver, I coordinated and attended every oncology appointment, treatment session, specialist consultation, and medical visit from the time of diagnosis until her death five days before Christmas in December of 2024. Because I was present at every encounter, I had firsthand knowledge of the discussions that occurred, the assessments that were performed, and the concerns that were raised. I took time after every visit to review her medical records to ensure that I was prepared for upcoming appointments.

Over time, I became increasingly concerned when I reviewed portions of her oncology medical records. There were instances in which medical documentation reflected assessments that had not occurred during the visit itself. For example, provider notes repeatedly documented "no weight changes" despite the fact that my mother's weight was not obtained during those specific appointments. Concerned about her nutritional status, my father and I had implemented and maintained a detailed weight log at home, allowing us to closely monitor her condition. Through this tracking, we observed a significant and ongoing decline in her weight that was becoming increasingly difficult to ignore. Yet portions of the medical record did not consistently reflect what we were witnessing in real time. I also became concerned about the accuracy of medication documentation. On two occasions, my mother and I reported two medications that she could not tolerate due to significant side effects and life-threatening responses. Despite these reports, those medications remained listed as active within her medical record. In one instance, this resulted in a medication being refilled and processed for delivery in error. Fortunately, I became aware of the delivery and was able to intervene before the medication was administered, and the prescription was subsequently cancelled.

While the issue was ultimately corrected, the experience reinforced my concerns about the importance of accurate documentation and medication reconciliation, particularly for patients with complex medical conditions where such errors can have serious consequences. Due my background in the medical field, I understood the implications. Medical records serve as the primary communication tool between providers. They influence treatment decisions, referrals, authorizations, care planning, and clinical interventions. When documentation contains information that was not assessed or fails to accurately reflect a patient's condition, opportunities for intervention can be delayed or missed entirely.

My concerns extended beyond documentation. At the beginning of her cancer journey, we were introduced to what appeared to be a comprehensive interdisciplinary team that included oncology providers, surgeons, a nutritionist, and an oncology social worker. While the framework for coordinated care existed, the consistency of that support often did not. One of the most significant challenges involved nutrition and social work support follow up. As my mother continued her cancer treatments, maintaining adequate nutrition became increasingly important. She had an assigned nutritionist and social worker however, meaningful follow-up was limited, and many questions regarding supplementation, treatment-related side effects, linkage to external services, dietary modifications, and nutritional strategies remained unanswered. I did not let this impede my ability to care for my mother.  Ironically, most of the helpful nutritional guidance I received came from seeking my own nutritional support from external medical providers who were competent with cancer and nutrition, including my cousin, Mrs. Tiffany Davis, who was caring for her mother during a battle with pancreatic cancer. She shared practical resources, educational materials, nutritional recommendations, and caregiver insights that had proved valuable during my aunt's cancer journey. I remain deeply grateful for her support.

At the same time, I found myself asking an uncomfortable question. As my mother’s caregiver, why was I navigating my mother’s cancer journey with such limited help from the professionals assigned to my mother’s care?  Due to these concerns, I attempted to transfer my mother’s oncology care early on in her care with her consent. What I encountered revealed another significant barrier within our healthcare system. Contrary to common assumptions, the challenge was not insurance coverage. My mother had excellent health insurance with comprehensive benefits. The barrier was now the medical insurance process itself.

Despite having coverage, we were informed that transferring oncology care could take eight weeks because the cancer center chosen was not in contract with her current insurance. If the new facility and oncologist would agree to the contract, the estimated eight weeks was needed to carry out contracting requirements, administrative reviews, authorization processes, and medical record transfers and review. For many medical conditions, such delays would be frustrating. For a patient actively battling cancer, it can be life-threatening. Cancer does not pause while paperwork moves through administrative channels. The process left us facing an impossible choice: Remain with the current care team despite our concerns, or risk delays in treatment while waiting for approvals and administrative requirements to be completed. Given the urgency of her diagnosis, remaining in her treatment plan became the only realistic option.

 Throughout her illness, I became my mother’s care coordinator, patient advocate, researcher, and navigator, with the help of my father and my brother. I pursued referrals, coordinated services, secured equipment, communicated with insurance companies, educated my family members who were involved in her care on her treatment, and ensured every available resource was explored. When her disease progressed and the focus shifted to comfort care, I coordinated hospice services alongside her longtime primary care physician. We lovingly cared for her until the end, which occurred five days before Christmas 2024. She passed peacefully at home, surrounded by family.

While I remain grateful for the many providers who contributed positively, I cannot ignore the systemic issues our family encountered while caring for both my son following his accident and my mother during her cancer journey. We learned that healthcare outcomes are often influenced, not only by medical treatment, but by a patient's ability to navigate an increasingly complex healthcare system. This reality should concern all of us. My advocacy was informed by years of professional experience, but what happens to patients who do not have a caregiver with healthcare experience sitting beside them at every appointment? What happens to caregivers who do not know how to challenge inaccurate documentation, request consultations, appeal insurance decisions, or coordinate services independently? What happens to families who lack the time, knowledge, or resources to advocate as timely as I did? These questions are not about assigning blame to individual providers. These questions are about accountability and the significant need for improved health access.

Healthcare systems must recommit to accurate documentation instead of templates that do not reflect patients’ current medical status, meaningful interdisciplinary collaboration, timely supportive services, caregiver inclusion, and comprehensive care coordination. Administrative processes should support access to care rather than create barriers to it, particularly for patients facing serious or life-limiting illnesses. Patients deserve more than treatment; they deserve partnership. Caregivers deserve more than instructions; they deserve support. And healthcare professionals deserve systems that allow them to practice ethically, collaboratively, and effectively. My son survived because of exceptional trauma care, and my ability to navigate complex healthcare systems, effective care coordination, and persistent advocacy. My mother passed away with dignity because I worked tirelessly to ensure she received the support, services, and resources she needed throughout her cancer journey.

However, no patient or family should have to become a healthcare expert to receive quality care. When individuals are facing a serious illness or caring for a loved one, the complexity of the healthcare system adds to an already-enormous burden. Caregivers often find themselves balancing medical appointments, treatment decisions, medication management, insurance concerns, employment responsibilities, and family obligations, all while trying to support someone they love. The demands of caregiving, coupled with the emotional and psychological impact of uncertainty, grief, and decision making can be overwhelming. Healthcare should alleviate burdens whenever possible, not create additional obstacles for those already navigating some of the most challenging moments of their lives.

I share our story not because it is unique, but because it is not. Every day, patients and caregivers encounter similar challenges. By speaking openly about these experiences, I hope to contribute to a larger conversation about patient advocacy, standards in ethical practice, accountability, interdisciplinary care, care coordination, medical insurance processes, and the changes necessary to create a healthcare system that truly serves those who depend on it. 

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About the author: Ebony A. McNichols, MSW, CAP, is a social worker, educator, and healthcare advocate with more than a decade of experience serving individuals and families affected by mental health challenges, chronic illnesses, trauma, and complex medical conditions. She is a Certified Addiction Professional (CAP) through the State of Florida and has dedicated her career to advancing patient-centered care, community engagement and development, and interdisciplinary collaboration. Ebony is the founder of The Bethany House, Inc., a 501(c)3 non-profit organization that focuses on family and youth enrichment. She is also the founder of Luxe Wellness, LLC, which promotes mental and emotional health. Early in her career, Ebony spent eleven years working within maternal-child healthcare settings, while also supporting patients across various other medical specialties as well. Throughout her professional journey, she has served as a case manager, chronic illness coordinator, and healthcare leader for a nationally recognized insurance organization, where she championed care coordination, patient advocacy, and equitable access to healthcare services. 

In addition to her professional accomplishments, Ebony's perspective has been shaped by her personal experiences as a family caregiver and healthcare advocate. Navigating complex medical systems on behalf of loved ones reinforced her commitment to improving communication, care coordination, caregiver inclusion, and healthcare accountability. Today, she serves as an Assistant Professor of Social Work and Field Education Coordinator, where she prepares future social workers to lead with compassion, ethical practice, and a commitment to advocacy. 

Through her writing and advocacy, Ebony seeks to elevate the voices of patients and caregivers while promoting healthcare systems that prioritize dignity, partnership, and quality care for all. Her perspective is shaped not only by her professional experience but also by her personal experience as a caregiver and healthcare advocate for family members navigating life altering medical crises. After supporting her son through recovery from a traumatic accident and accompanying her mother through her battle with cancer, she gained firsthand insight into the challenges patients and caregivers face when navigating healthcare systems, insurance barriers, discharge planning, and access to supportive services. 

Through her advocacy and writing, she seeks to elevate the voices of patients and caregivers, promote accountability within healthcare systems, and advance conversations around patient-centered care, accurate documentation, caregiver inclusion, and comprehensive care coordination. Ebony believes that quality healthcare should extend beyond treatment to encompass partnership, communication, dignity, and support for both patients and the families who care for them.