Improving Advance Care Planning by Accommodating Family Preferences

Hines, Stephen C.; Glover, Jacqueline J.; Babrow, Austin S.; Holley, Jean Lake; Badzek, Laurie; Moss, Alvin H.

doi:10.1089/109662101753381629

Cited by 111 publications

(93 citation statements)

References 29 publications

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“…For many, family members are an integral component of ACP because patients rely extensively on them to help make end-of-life decisions. Unfortunately, families often lack knowledge of the patient's values and preferences (5,10). Patients may overestimate the degree of autonomy that their surrogates want to exercise and underestimate the importance of ensuring that their surrogates have the information needed to make informed choices.…”

Section: Discussionmentioning

confidence: 99%

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

Davison

2006

Clinical Journal of the American Society of Nephrology

153

184

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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.

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Section: Discussionmentioning

confidence: 99%

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

Davison

2006

Clinical Journal of the American Society of Nephrology

153

184

View full text Add to dashboard Cite

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“…In a study of United States maintenance dialysis patients, only 18% preferred to live as long as possible even if suffering (27). Similarly, in a study of patients with advanced CKD in Canada, a majority preferred their care to focus on decreasing pain and suffering, while only 18% favored dialysis to extend their lives (28).…”

Section: Why a Palliative Approach To Dialysis Care Is Neededmentioning

confidence: 99%

A Palliative Approach to Dialysis Care

Grubbs

Moss

Cohen

et al. 2014

Clinical Journal of the American Society of Nephrology

Self Cite

131

116

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As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients' informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach.

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“…For patients ambivalent about how to proceed, a time-limited trial of hemodialysis or other dialysis modalities with a priori definition of measures of success or failure is a reasonable approach. In a survey of patients undergoing hemodialysis and their surrogates, three quarters of surrogates viewed a time-limited trial of hemodialysis positively when faced with uncertainty about outcomes (66). It is also important to emphasize that stopping dialysis and not starting dialysis are morally, ethically, and legally equivalent (10).…”

Section: Beneficence and Nonmaleficence Need To Be Viewed Through Thementioning

confidence: 99%

The Ethics of Chronic Dialysis for the Older Patient

Thorsteinsdottir

Swetz

Albright³

2015

Clinical Journal of the American Society of Nephrology

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Recent research highlights the potential burdens of hemodialysis for older patients with significant comorbidities, for whom there is clinical equipoise regarding the net benefits. With the advent of accountable care and bundled payment, previous incentives to offer hemodialysis to as many patients as possible are being replaced with a disincentive to dialyze high-risk patients. While this may offset the harm of overtreatment for some elderly patients, some voice concerns that the pendulum will swing too far back, with a return to ageist rationing of hemodialysis. Nephrologists should ensure that the patient's rights to be informed about the potential benefits and burdens of hemodialysis are respected, particularly because age, functional status, nutritional status, and comorbidities affect the net balance between benefits and burdens. Nephrologists are also called on to help patients make a decision, for which the patient's goals of care guide determination of potential benefit from hemodialysis. This article addresses concerns about present overtreatment and future risk of undertreatment of older adults with ESRD. It also discusses ways in which providers can ethically approach the question of initiation of hemodialysis in the elderly patient by including patient-specific estimates of prognosis, shared decision-making, and the use of specialist palliative care clinicians or ethics consultants for complex cases.

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Improving Advance Care Planning by Accommodating Family Preferences

Abstract: Differences in preferences for the advance care planning process between patients and their surrogates and failure to discuss specific end-of-life values and preferences may explain why surrogates often lack information needed to serve as surrogate decision-makers.

Cited by 111 publications

References 29 publications

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

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

A Palliative Approach to Dialysis Care

The Ethics of Chronic Dialysis for the Older Patient

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