Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study.

Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group. A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results. Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion. Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.

O'Riordan J ，Noble H ，Kane PM ，Smyth A ... -  《-》

Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients.

Eneanya ND ，Goff SL ，Martinez T ，Gutierrez N ，Klingensmith J ，Griffith JL ，Garvey C ，Kitsen J ，Germain MJ ，Marr L ，Berzoff J ，Unruh M ，Cohen LM ... -  《BMC Palliative Care》

Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists.

Although dialysis may not provide a large survival benefit for older patients with kidney failure, few are informed about conservative management. Barriers and facilitators to discussions about conservative management and nephrologists' decisions to present the option of conservative management may vary within the nephrology provider community. Interview study of nephrologists. National sample of US nephrologists sampled based on sex, years in practice, practice type, and region. Qualitative semistructured interviews continued until thematic saturation. Thematic and narrative analysis of recorded and transcribed interviews. Among 35 semistructured interviews with nephrologists from 18 practices, 37% described routinely discussing conservative management ("early adopters"). 5 themes and related subthemes reflected issues that influence nephrologists' decisions to discuss conservative management and their approaches to these discussions: struggling to define nephrologists' roles (determining treatment, instilling hope, and improving patient symptoms), circumventing end-of-life conversations (contending with prognostic uncertainty, fearing emotional backlash, jeopardizing relationships, and tailoring information), confronting institutional barriers (time constraints, care coordination, incentives for dialysis, and discomfort with varied conservative management approaches), conservative management as "no care," and moral distress. Nephrologists' approaches to conservative management discussions were shaped by perceptions of their roles and by a common view of conservative management as no care. Their willingness to pursue conservative management was influenced by provider- and institutional-level barriers and experiences with older patients who regretted or had been harmed by dialysis (moral distress). Early adopters routinely discussed conservative management as a way of relieving moral distress, whereas others who were more selective in discussing conservative management experienced greater distress. Participants' views are likely most transferable to large academic medical centers, due to oversampling of academic clinicians. Our findings clarify how moral distress serves as a catalyst for conservative management discussion and highlight points of intervention and mechanisms potentially underlying low conservative management use in the United States.

Ladin K ，Pandya R ，Kannam A ，Loke R ，Oskoui T ，Perrone RD ，Meyer KB ，Weiner DE ，Wong JB ... -  《-》

An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD.

Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP. Qualitative study. Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services. Semistructured interviews. Transcripts were analyzed using thematic analysis. 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest). Only English-speaking patients/caregivers participated in the interview. ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.

Sellars M ，Clayton JM ，Morton RL ，Luckett T ，Silvester W ，Spencer L ，Pollock CA ，Walker RG ，Kerr PG ，Tong A ... -  《-》

System-Level Barriers and Facilitators for Foregoing or Withdrawing Dialysis: A Qualitative Study of Nephrologists in the United States and England.

Despite a growing body of literature suggesting that dialysis does not confer morbidity or mortality benefits for all patients with chronic kidney failure, the initiation and continuation of dialysis therapy in patients with poor prognosis is commonplace. Our goal was to elicit nephrologists' perspectives on factors that affect decision making regarding end-stage renal disease. Semistructured, individual, qualitative interviews. Participants were purposively sampled based on age, race, sex, geographic location, and practice type. Each was asked about his or her perspectives and experiences related to foregoing and withdrawing dialysis therapy. Interviews were audiotaped, transcribed, and analyzed using narrative and thematic analysis. We conducted 59 semistructured interviews with nephrologists from the United States (n=41) and England (n=18). Most participants were 45 years or younger, men, and white. Average time since completing nephrology training was 14.2±11.6 (SD) years. Identified system-level facilitators and barriers for foregoing and withdrawing dialysis therapy stemmed from national and institutional policies and structural factors, how providers practice medicine (the culture of medicine), and beliefs and behaviors of the public (societal culture). In both countries, the predominant barriers described included lack of training in end-of-life conversations and expectations for aggressive care among non-nephrologists and the general public. Primary differences included financial incentives to dialyze in the United States and widespread outpatient conservative management programs in England. Participants' views may not fully capture those of all American or English nephrologists. Nephrologists in the United States and England identified several system-level factors that both facilitated and interfered with decision making around foregoing and withdrawing dialysis therapy. Efforts to expand facilitators while reducing barriers could lead to care practices more in keeping with patient prognosis.

Grubbs V ，Tuot DS ，Powe NR ，O'Donoghue D ，Chesla CA ... -  《-》