Facilitating Advance Care Planning for Patients with End-Stage Renal Disease

Abstract

Comprehensive care of patients with ESRD requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis. However, there are no standards of care regarding when to initiate or how to facilitate ACP. The purpose of this study was to determine the perspectives of patients with ESRD of the salient elements of ACP discussions. An ethnographic, qualitative, in-depth interview study was conducted of outpatients of a university-affiliated nephrology program. Twenty-four patients with ESRD were purposively selected from the renal insufficiency, hemodialysis, and peritoneal dialysis clinics. Establishing patient "buy-in" by identifying perceived benefits of ACP along with acknowledging patients' sense of personal empowerment were critical both for the effective framing of facilitated ACP and for determining patients' ability to participate in facilitated ACP. Patients required more information and earlier initiation of ACP discussions. Information needed to focus more on the individual and how his or her illness and interventions would affect his or her life and relationships and what he or she values most. Empathetic listening also was viewed as an integral component of facilitated ACP. Physicians clearly were seen as having the responsibility for initiating and guiding ACP. The role of patients and family within ACP is complex and varies significantly between patients. For most, family was an integral component of ACP, and many relied extensively on family to make end-of-life decisions. These findings identify a precarious tension between patients' preferences in terms of facilitated ACP and current clinical practice.

Healthcare Intensity at Initiation of Chronic Dialysis among Older Adults

“…21 Life expectancy is often important in shaping treatment preferences. 22 However, in older patients with severe chronic illness and limited life expectancy, maximizing survival may be but one of several competing treatment goals. Patients may be faced with tradeoffs between prolonging life and optimizing other goals, such as preserving dignity, maximizing comfort, and maintaining quality of life.…”

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…69,135 Relatives clearly have an important role to play in decisions about ACP and in providing hands-on care for patients dying at home. 133,136 However, carers' entitlement to information about prognosis and their role in decision-making and future planning is frequently unclear, and carers assess professional communication about EOLC as inadequate. 100 Evidence for effectiveness of advance care planning Despite the very considerable policy commitment to ACP in the UK as well as internationally, it remains uncommon in practice.…”

Advance Directives in Patients Over 60 Years Old: Assessment of Perceived Value and Need For Education in the Outpatient Setting

“…Previous research has shown that patients prefer end-of-life care discussions to be initiated by their physicians [19], and that lack of physician initiative is one of the biggest barriers to advance care planning [20,21]. Differences between the physician and patient likely contribute to this barrier.…”