Patient-Centered Care

Abstract

In light of mounting federal government debt and levels of Medicare spending that are widely viewed as unsustainable, commentators have called for a transformation of the United States health care system to deliver better care at lower costs. This article presents the priorities of the Coalition for Supportive Care of Kidney Patients for how clinicians might achieve this transformation for patients with advanced CKD and their families. The authors suspect that much of the high-intensity, high-cost care currently delivered to patients with advanced kidney disease may be unwanted and that the "Three Aims" put forth by the National Quality Strategy of better care for the individual, better health for populations, and reduced health care costs may be within reach for patients with CKD and ESRD. This work describes the coalition's vision for a more patient-centered approach to the care of patients with kidney disease and argues for more concerted efforts to align their treatments with their goals, values, and preferences. Key priorities to achieve this vision include using improved prognostic models and decision science to help patients, their families, and their providers better understand what to expect in the future; engaging patients and their families in shared decision-making before the initiation of dialysis and during the course of dialysis treatment; and tailoring treatment strategies throughout the continuum of their care to address what matters most to individual patients.

How the ESRD Quality Incentive Program Could Potentially Improve Quality of Life for Patients on Dialysis

“…Since the publication of the IOM report, there has been growing national interest in more individualized, patient-centered models of care (7,42). Patient-centered care seeks to tailor treatment strategies to what matters most to individual patients and align treatment plans and quality metrics to optimize patientimportant goals and preferences to maximize patient quality of life (43). If care is to be patient-centered care, it follows that patients and their caregivers should be included when priorities for clinical care and research are being established.…”

“…Value-based purchasing is a well intentioned step in the right direction. The CMS need to implement significant changes in how they develop measures for the ESRD QIP for it to be patient centered and assess what matters most to patients on dialysis (3,43). …”

The Ethics of Chronic Dialysis for the Older Patient

“…Also, the calculator for risk of progression of CKD to ESRD can help determine timing (24). Too strict an adherence to guideline-based care and quality metrics without discrimination by clinical status and goals of care can hinder a more nuanced and patient-centered approach to care (29,52,59).…”

“…Once key goals have been identified, patients often need help weighing their options to help them achieve their most important goals (59). There are, however, several challenges to true informed consent and shared decision-making.…”

“…Nephrologists and intensivists need to collaborate with clinical ethicists and palliative care providers to develop meaningful guidance and training for the clinicians who are helping patients and their families navigate these difficult decisions. We also need to ensure that guidelines and quality metrics allow stratification by clinical status and goals of care so that dialysis providers are not penalized for honoring the wishes of patients whose goals of care are less aggressive, as recommended by the dialysis advisory group of the American Society of Nephrology and others (29,52,59). More research is needed to guide treatment recommendation in this age group, especially frail elderly patients.…”