BEST EXPECTATIONS, WORSE OUTCOMES (PART II): A PATIENT AND FAMILY EXPERIENCE WITH RURAL HOME INFUSION
Erik Samarpan, RN, VA-BC™, LNC | Board Certified in Vascular Access; Legal Nurse Consultant; Oncology Credentialed; Infusion Specialist; BACSIG (Beyond Acute Care SIG) Director-at-Large
Continued from the November 2020 IQ Names changed for privacy To quickly recap our case presentation from the November 2020 issue of IQ, Jose is an 8-year-old Hispanic male with recently diagnosed Duchene’s Muscular Dystrophy (DMD) residing with his family in a rural, mountainous rural area of Northern Arizona. His mother, Marie, speaks English and acts as the interpreter when Jose does not understand my explanations and instructions. Unfortunately, Jose has had less than positive experiences related to the care and management of his implanted port. He also has had difficulties with the infusion of the Axon skipping medication he receives intravenously on a weekly basis (please refer to the November 2020 IQ for additional background). There are many questions that must be considered in a case like Jose’s. What does it mean when we ask an 8-year-old child to become their own advocate? How can this child question a nurse and other healthcare professionals caring for him or her? How can we help our patients become comfortable advocating for themselves particularly with the implied structural misbalance between the child and the authority? Is this not the same potential problem in both the acute and non-acute setting? Doesn’t this apply to adult patients as well? We can look to our peers, guidelines, and the evidence for answers. One important technique to consider is to integrate Neuro Linguistic Programming (NLP) into our practice. NLP techniques teach us how to incorporate such concepts as: • Thinking affects results • Thinking affects our (subjective) experience
• Use of persuasive language • Using body language • Influencing behavior and eliciting specific responses by use of advanced tools of verbal and non-verbal communications It is important all patients, but especially children, to plan extra time to describe what is happening. It is effective to use pictures and basic pathophysiology concepts that are specific to the patient and are based on individual factors, such as age, cognitive awareness, experiences, and language. There are different ways to explain the function of a port, its location and even the rationale behind flushing protocols. Conversely, explaining the possible negative outcomes when a healthcare professional fails to use proper accepted standard access and maintenance techniques may assist in the patient’s understanding of cause and effect. The goal is for the patient to receive excellent care and preventing undesirable outcomes. Teaching the adult caregiver at the same time as the child allows for a less threatening environment for the child. When the child hears their caregiver asking for clarification on issues, it creates a shared sense of learning and responsibility. Neither are put at the disadvantage of feeling inadequate. This shared learning respects the child’s autonomy, to the extent possible, and empowers the child. Ultimately, the child feels more comfortable asking questions and for help. Each time I see Jose, I reinforce the flush technique by scrubbing the site with the Chloraprep for five seconds or using a circular pattern of scrubbing. I then asking him if that is “ok”? His response now is no; You have to scrub back and forth for 30 seconds. CONTINUED ON NEXT PAGE FEBRUARY 2021 | 22
