Viola’s story poignantly illustrates the struggles of individuals battling dysphagia, a condition characterized by difficulty swallowing. Her ordeal began at 58 with a hiatal hernia, obstructing the passage of food into her stomach. Now 84, her condition has deteriorated significantly, leaving her barely able to consume one of the three recommended daily nutritional supplements. Her esophagus has narrowed, and the associated muscles no longer function properly. Despite her worsening condition and dramatic weight loss of over 20 kilos in the last ten years, a comprehensive care plan remains absent from her medical records. This lack of proactive medical intervention has left Viola feeling worthless and burdensome, a sentiment echoed by her daughter, who questions how much better her mother’s life could have been with early and consistent medical support.
Viola’s interactions with the healthcare system have been frustratingly cyclical. Visits to her primary care physician often result in the same, unhelpful recommendation: to continue with nutritional supplements. When her inability to consume food or liquids becomes critical, emergency room visits become necessary. There, she receives intravenous fluids, experiencing temporary relief, regaining energy and vitality. These short-term improvements underscore the potential for a better quality of life with proper, ongoing care, a point emphasized by her daughter’s recollection of a two-week hospital stay where Viola gained two kilos from hydration alone, sustaining her for the following autumn. This repetitive cycle of decline and temporary relief highlights the systemic failure to address the underlying issue and provide Viola with a sustainable solution.
A recent fall resulting in fractures in her shoulder and pelvis further complicated Viola’s situation. Despite requesting short-term residential care, she was discharged home, compounding her feelings of helplessness and abandonment. The lack of follow-up care, despite her long-standing struggles with nutrition, underscores the systemic neglect often experienced by dysphagia patients. Viola’s situation is not unique. Dysphagia, often associated with conditions like stroke, tumors, dementia, Parkinson’s disease, and ALS, affects approximately 8% of the adult population, with a significantly higher prevalence among the elderly in care facilities. The scarcity of speech-language pathologists (SLPs), the professionals specializing in diagnosing and managing dysphagia, particularly within elder care settings, contributes to the diagnostic and treatment gap.
This shortage of SLPs creates a critical gap in care, as Kerstin Wiström, president of the Swedish Speech-Language Pathologists Association, explains. Patients like Viola, discharged from hospital care after a dysphagia diagnosis, often fall into a healthcare void. The expertise and recommendations provided during hospitalization often fail to translate into effective ongoing care within the community or elder care facilities due to a lack of trained personnel and resources. This lack of continuity and specialized support leads to inconsistent and inequitable care, highlighting a systemic failure to adequately address the needs of dysphagia patients. Wiström advocates for increased SLP presence in hospitals, specifically within departments treating stroke and other high-risk patient groups, and for ongoing SLP support within elder care facilities to ensure consistent and informed care practices. The current system, she argues, effectively ignores the problem, resulting in undignified care for those struggling with dysphagia.
Viola’s experience reflects Wiström’s concerns. The lack of a clear transition plan and consistent follow-up between hospital and community care leaves patients vulnerable and their initial assessments often rendered useless. The absence of trained personnel within elder care settings to implement the recommended strategies further exacerbates the situation. Viola’s repeated gastroscopy procedures, with only two resulting in temporary relief, further illustrate the piecemeal approach to her care. Her desire for increased independence and a more responsive healthcare system resonates with the need for proactive and patient-centered care. Viola’s plea to be treated with dignity and to not have to ”beg for help” highlights the emotional toll of navigating a healthcare system ill-equipped to address her needs.
Viola’s story underscores the urgent need for systemic changes in the management of dysphagia, particularly within the elderly population. The lack of dedicated SLP resources, the discontinuity of care between hospital and community settings, and the absence of comprehensive care plans contribute to the suffering and diminished quality of life experienced by individuals like Viola. Increasing awareness of dysphagia, investing in SLP training and resources, and establishing clear pathways for ongoing care are essential steps towards providing dignified and effective care for this vulnerable population. The focus should shift from reactive, crisis-driven interventions to proactive, preventative, and patient-centered care that empowers individuals like Viola to maintain their independence and dignity.
