“Maybe They Don't Even Know That I Exist”: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease

Abstract

Background and objectives Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease.Design, setting, participants, & measurements As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes. ResultsThe following three themes emerged from interviews with patients' family members and friends: (1) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; (2) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient.Conclusions Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.

Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease

“…The work described here was conducted as part of a single-center study on advance care planning (11,12). This study enrolled patients receiving care in the 1 Center of Innovation for Veteran-Centered and Value-Driven Care, 2 Nephrology Section, Hospital and Specialty Medicine Service, and Nephrology clinic or dialysis unit at the VA Puget Sound Health Care System in Seattle, Washington, who had an eGFR#20 ml/min per 1.73 m 2 on at least two occasions 3 months apart or were undergoing treatment with maintenance dialysis.…”

Family Members’ Understanding of the End-of-Life Wishes of People Undergoing Maintenance Dialysis

“…In the context of this earlier work, our findings indicate that there has been limited progress over the last several decades in family members' understanding of the values and preferences of people undergoing dialysis and highlight some of the challenges involved in supporting the advance care planning process (17,(23)(24)(25). Qualitative studies among family members of people both with (24,26) and without kidney disease (27,28) speak to the complex dynamics of engaging family members in patients' care. Similar to other chronic conditions (27,29), it is not unusual for the family members of people with advanced kidney disease to become involved in their care relatively late in the course of illness in situations of crisis or increasing care needs, at which time their involvement is often expected and prompted by the health system (17,24).…”

The Impact of Care Partners on the Mobility of Older Adults Receiving Hemodialysis

“…8 Yet, care partners of persons receiving hemodialysis report they feel their role is often overlooked in the clinical care plan. 31 Notably, others have shown that less social support is also associated with worse mortality among dialysis-dependent adults. 6 , 7 To address this disconnect, employing models of kidney care that incentivize care coordination, such as those within the Kidney Care Choices model, 32 may be one potential solution.…”