As healthcare workers, many of us aim for person centered care, and considering our patients’ perspectives. However, this can often be overlooked at certain points during our day, because we are managing so many factors all at once in the medical setting.
I am a speech-language pathologist and for me the idea of person-centered care was emphasized through the evidence-based practice model. This states that we should consider patient perspectives, research evidence and our own clinical experience together in order to make informed decisions in our clinical practice. Different aspects of the model may have more weight based on the patient and the case. In this post, I am going to delve into what this might look like in dysphagia management, and specifically including the cultural considerations that are not always emphasized in the evidence-based practice model.
Dysphagia is a swallowing disorder that can affect the eating and swallowing process anywhere from chewing or sipping on food or drink to moving food down the pharynx and esophagus. Patients may have trouble chewing their food, moving it from the front to back of their mouth, swallowing it safely and protecting their airway while swallowing. Some causes of dysphagia are strokes, brain injury, diseases such as Parkinson’s, Amyotrophic Lateral Sclerosis and Alzheimer’s as well as head and neck cancer. Speech-Language Pathologists are the care providers trained in dysphagia assessment and treatment. Our job is to provide the appropriate care to improve swallowing ability, ensure adequate nutrition and safety while swallowing for the patient, and lastly provide the patient with improved quality of life. There is so much joy that comes with eating food, and is often a large part of a patient’s culture and bonding with others. If we ignore these factors, we are overlooking a large component of person centered care.
On top of the physical impact, living with dysphagia has a negative psychosocial impact as well. However, dysphagia has significant risks that when not prioritized can exacerbate danger to the patient. I am now going to identify some ethical challenges when managing dysphagia care and the cultural component using the American Speech and Hearing Association Code of Ethics.
Principle I of the ASHA Code of Ethics emphasizes the responsibility of SLPs to “hold paramount the welfare of persons they serve professionally”. Each Principle has individual rules, with each rule assigned a letter. Principle I, Rule K states: “Individuals who hold the Certificate of Clinical Competence shall evaluate the effectiveness of services provided, technology employed, and products dispensed, and they shall provide services or dispense products only when benefit can reasonably be expected.”
In her article “Food Culture, Preferences and Ethics in Dysphagia Management “ (2015), Belinda Kenny, CCC-SLP explains an ethical dilemma with dysphagia: “Essentially, two people with the same severity of swallowing impairment may experience very different impacts upon social and cultural participation.” With these two points in mind, our services that may improve swallowing function may not support the welfare of the patient and may not be fully effective if we are not taking into account the cultural relationship with food and restoring that for the patient, whatever that may look like.
One solution to this ethical dilemma is incorporating Shared Decision Making. This model developed/adapted by Kenny in her research article incorporates healthcare team values, patient-centered care and functional autonomy. In this article, they share the story of a patient, “Marco, who participated in events organized within his Italian community. He also regularly attended the local club, sporting fixtures, dined at local restaurants and invited work colleagues for barbecues at his home. Marco had severe oral and pharyngeal dysphagia. He initially received nasogastric feeding. However, following intensive speech pathology intervention, Marco gradually commenced oral feeding and was discharged with a texture-modified diet comprising puréed foods and thickened fluids”, which is the highest level of diet modification that SLPs provide (Kenny 2015). Following his discharge, Marco had slow progress and expressed distaste and frustration with his slow progress and modified diet. He would refuse his modified diet with family and friends present, forcing his daughter to give him food that went against his diet modifications and increased his risk of aspiration.
“Marco [was] attached to having certain foods and drinks, including a morning coffee, dinner with senior members of his community and a pizza and beer with his mates” (Kenny 2015). For the speech language pathologist, they needed to address the tension between “safety, quality of life and Marco’s rehabilitation goals” (Kenny 2015).
Principle I, Article M that says “Individuals who hold the Certificate of Clinical Competence shall use independent and evidence-based clinical judgement, keeping paramount the best interests of those being served. If we are informed of cultural food preferences, and are ignorant of said preferences, whether intentional or not, we are violating the ASHA Code of Ethics Principle I, Article C (2016) which articulates that “Individuals shall not discriminate in the delivery of professional services or in the conduct of research and scholarly activities on the basis of race, ethnicity, sex, gender identity/gender expression, sexual orientation, age, religion, national origin, disability, culture, language, or dialect.”
“Adults with intact swallowing reflexes make food choices that reflect their attitudes towards health, spiritual beliefs, cultural norms and life experiences.” (Kenny 2015). The same opportunity is necessary for patients with dysphagia of all cultural and spiritual backgrounds to experience autonomy and as much pleasure and comfort as possible with eating and drinking. As speech-language pathologists, we need to work with patients and their caregivers to make the best decision regarding diet, taking into account both nutrition and cultural preferences. We have our own perceptions of health with feeding, and must be aware of the potential influence of those beliefs when counseling the patient. Kenny outlines four health professional skills for shared decision making with dysphagia treatment: “communication, imagination, courage and reflection” (Kenny, 2015). We need to participate in “open communication, creative problem solving, leadership, and reflection during patient/health professional interactions.” (Kenny 2015). Beyond what the best practice for a situation like this is to incorporate shared decision making. This method allows clinicians to develop rapport and the risks and benefits of dysphagia management to provide the best plan of care for individual patients.
Beyond just dysphagia management, I believe we as healthcare professionals should adapt our decision making to focus and incorporate more of the patient’s perspective as much as possible, because we are not providing care for ourselves, but for the patient and their family.
How will you incorporate shared decision making in your practice?
Adult Dysphagia. (n.d.). Retrieved March 29, 2020, from https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589942550§ion
Code of Ethics. (2016, March 1). Retrieved March 28, 2020, from https://www.asha.org/Code-of-Ethics/
Cultural Competence. (n.d.). Retrieved March 28, 2020, from https://www.asha.org/Practice-Portal/Professional-Issues/Cultural-Competence/
Issues in Ethics: Cultural and Linguistic Competence. (2017). Retrieved March 28, 2020, from https://www.asha.org/Practice/ethics/Cultural-and-Linguistic-Competence/#sec1.2
Kenny, B. (2015). Food Culture, Preferences and Ethics in Dysphagia Management. Bioethics, 29(9), 646–652. doi: 10.1111/bioe.12189