Perceptions of hospitalized patients and their surrogate decision makers on dialysis initiation: a pilot study

Abstract

BackgroundDialysis is often initiated in the hospital during episodes of acute kidney injury and critical illness. Little is known about how patients or their surrogate decision makers feel about dialysis initiation in the inpatient setting.MethodsWe conducted a prospective cohort study at a large academic center in the United States. All patients who initiated dialysis during a 30-day period in 2016 were approached for enrollment. Study participants were defined as individuals who provided consent for dialysis initiation – either the patient or a surrogate decision-maker. Decisional satisfaction and the degree of shared decision-making were assessed using the decisional attitude scale and the control preferences scale, respectively. These scales were incorporated into a study questionnaire along with an exploratory structured interview.ResultsA total of 31 potential participants were eligible and 21 agreed to participate in the study. Continuous renal replacement therapy was used in 14 out of 21 cases (67%) and there was 33% in-hospital mortality in the study cohort. A majority (62%) of patients were unable to participate in the consent process for dialysis initiation and had to rely on a surrogate decision-maker. The mean score for the decisional attitude scale was 4.1 (95% CI 3.8–4.3) with a score of 5 corresponding to high decisional satisfaction. Most of the decisions were classified as shared and incorporated input from clinicians as well as patients or surrogates. Although 90% of participants agreed that they had a choice in making the decision, 81% were unable to mention any alternatives to dialysis initiation.ConclusionsDialysis initiation was associated with high decisional satisfaction and most participants felt that the decision incorporated input from patients and providers. However, inpatient dialysis initiation was commonly associated with loss of decisional capacity and reliance on a surrogate decision-maker. This finding is likely driven by critical illness. Survivors of critical illness who remain dialysis dependent may need to revisit conversations about the rationale, risks, and benefits of dialysis.Electronic supplementary materialThe online version of this article (10.1186/s12882-018-0987-1) contains supplementary material, which is available to authorized users.

Application of the Family Resilience Framework to Dyadic Shared Decision-Making in Dialysis: An Interpretive Phenomenological Inquiry

“…In practice, dialysis modality discussions are triggered by algorithms informed by regulation (DHS, CMS, 2008) or clinical recommendations (Rocco et al, 2015). This episodic paradigm of decision-making may explain why patients initiate dialysis modalities that are not consistent with their goals and values (Amar et al, 2018;Davis & Davison, 2017;Morton et al, 2010;Visser et al, 2009).…”

Dyadic shared decision-making in dialysis: An interpretive phenomenological inquiry.

“…Patients’ understanding of family roles and caregiver preference influences dialysis modality selection (Harwood & Clark, 2014; Morton et al, 2010). The lack of inclusion of family may explain why patients start modalities that are not consistent with their goals and values and do not feel engaged in decision making (Amar et al, 2018; Davis & Davison, 2017).…”