The patient experience of hemodialysis vascular access decision-making

Abstract

Background: To describe vascular access (VA)-related decision-making from the patient perspective, in patients who have already chosen hemodialysis as their renal replacement modality, and identify areas where physicians can improve this experience. Methods: In-person, semi-structured interviews with 15 patients with end-stage kidney disease were systematically analyzed by two independent researchers using thematic analysis. Interviews were conducted until systematic analysis revealed no new themes. Results: Patients had mean age 57 (range 22–85), with seven males and diverse racial/ethnic/marital status. All (15/15) patients viewed VA as “intertwined and interrelated” with dialysis, prioritized the dialysis, described the VA merely as the “hookup” to life-preserving dialysis and gave it minimal consideration. Three themes were identified: consolidation of dialysis and VA, reliance on supportive advisors and communication with physicians. Although 14/15 patients described processes common to medical decision-making, including information seeking, learning from the experiences of others, and weighing risks and benefits, they did not apply these processes specifically to VA. While all participants took ownership of the VA decision, they lacked clear understanding about the different types of VA and their consequences. Most patients (14/15) depended on family and friends for reinforcement, motivation and advice. Patients all described physician characteristics they associated with trustworthiness, the most common being listening and explaining, demonstrating empathy and making an effort to meet the patient’s individual needs. Perceived arrogance, unavailability and lack of expertise represented untrustworthiness. The majority (14/15) accepted VA recommendations from physicians they found trustworthy and authoritative. Conclusions: The study participants were minimally engaged in VA decision-making. Educational aids and shared decision-making tools are needed to empower patients to make better-informed, self-efficacious VA decisions.

Shared decision-making in hemodialysis vascular access practice

“…In 1 qualitative study, the majority of patients interviewed (14 of 15) disclosed minimal engagement in vascular access decision making and lack of a clear understanding about the different types of access and their consequences. 24 In an interview of 10 older adults enrolled in a pilot clinical trial of AVF versus AVG vascular access strategy 25 and interviewed 6 months after AV access placement, all (10 of 10) patients perceived the intervention of AV access placement as "something that needed to be done"; 6 (of 10) patients declared that the decision of AV access placement was made collaboratively between the treating physician, patient, and/or family members. When asked to reflect on each access (catheter vs. AV access received) and compare accessrelated experiences, most patients (7 of 10) reported a preference for catheter rather than AV access; reasons for catheter preference were AV access failure (n ¼ 3) and dislike of needles (n ¼ 4).…”

“…Other studies revealed that patients perceive vascular access decisions as "intertwined and interrelated" with dialysis initiation and tend to not differentiate between dialysis and vascular access in decision-making, 22 all of which deprive the patients from meaningful engagement in vascular access decision making. 24…”

“…[15][16][17] Despite the emerging interest in and ethical imperative of SDM, patient preference-based decisions are not commonly practiced in vascular access care. [18][19][20][21][22][23][24] In this article, we discuss the current state of vascular access practice, present reasons why SDM is needed in vascular access practice, discuss barriers and potential solutions to SDM implementation, and hypothesize research questions if patient preference-based decision-making were routinely accomplished in vascular access care. To do the work, we performed a scoping review of existing qualitative and quantitative studies concerning SDM in the field of nephrology in general and hemodialysis vascular access in particular.…”

New Frontiers in Vascular Access Practice: From Standardized to Patient-tailored Care and Shared Decision Making

“…These studies revealed themes of heightened vulnerability, device intrusiveness on the body, disfigurement, mechanization of the body, impinging on way of life, imposing burdens, self-preservation and ownership, and confronting decisions and consequences 65,66 . In-person semi-structured interviews have probed patient reports on vascular access decision making and outcomes attitudes 58,67 . In one qualitative study, the majority of patients interviewed (14 of 15) disclosed minimal engagement in vascular access decision making and accepted vascular access recommendations from physicians.…”

Patient and Clinician Perspectives on Shared Decision Making in Vascular Access Selection: A Qualitative Study

“…21,22 Other work characterizing patients' perspectives on vascular access has suggested that the emotional and physical tolls of living with their access are high 23 and that factors such as communication quality, information seeking, and supportive relationships underlie their decisions. 24 However, an understanding of how the perspectives of patients and others involved in the circle of care contribute to shared decision making in this context is limited.…”