The Creation of an Advance Care Planning Process for Patients With ESRD

doi:10.1053/j.ajkd.2006.09.016

American Journal of Kidney Diseases

Volume 49, Issue 1, January 2007, Pages 27-36

https://doi.org/10.1053/j.ajkd.2006.09.016 Get rights and content

Comprehensive care of patients with end-stage renal disease (ESRD) requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis therapy. ACP currently is under evolution from a document-driven decision-focused event. This article describes a new approach to ACP that emphasizes a relational patient-centered process that focuses on broader goals of care for a particular dialysis patient with known medical problems and is designed to serve as a guide to help nephrologists, social workers, and other health care professionals explore ACP discussions with their patients with ESRD. Specifically, we define ACP, highlight goals and key features of this facilitated ACP process, and provide an interview guide with examples of questions that can be used to explore the various aspects of ACP with patients and their families. Outcomes of such an ACP process will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the entire end-of-life experience and having outcomes match patient preferences. It is expected that such a process will enhance shared decision making among patient, surrogate, and health care provider and help build strong and intimate relationships that can only serve to enhance end-of-life care. Throughout this process, patients are not abandoned as they confront the realities of declining health and functional status, but rather are supported through their illness and life on dialysis treatment.

Section snippets

Defining ACP

ACP is a process that involves understanding, reflection, communication, and discussion between a patient, family/health care proxy, and staff for the purpose of prospectively identifying a surrogate, clarifying preferences, and developing individualized plans for care near the end of life.22, 23 ACP establishes a set of relationships, values, and processes for approaching end-of-life decisions for individual people²⁴ and is specific not only to a patient’s goals and values, but also to the

Key Aspects and Goals of ACP in Patients With ESRD

Historically, the value of ACP was believed to lie in the preservation of patient autonomy through communication to physicians of the patient’s preferences for future care in the event of his or her decisional incapacity. However, there is compelling need for elderly and chronically ill patients to think about the future direction of their medical care, even if they remain competent.²⁶ In a medical crisis, patients may be emotionally incapable of objectively weighing the benefits and burdens of

Patient Participation

Attention to patient participation is central to facilitated ACP and focuses on a 6-fold determination of: (1) the patient’s ability to be involved in the process, (2) interest in participating, (3) perception of level of control and power, (4) perceived benefits of participation, (5) resources to participate, and, finally, (6) identification of whom the patient wishes to engage in these discussions. Depression, denial, or cognitive dysfunction may prevent the ability for meaningful

Decision Making and Defining Priorities for Goals of Care

After the foundation of patient participation is established, the real work of facilitated ACP begins. If the intent of ACP is to define goals of care and establish a means for making end-of-life decisions, we must measure the patient’s and their family’s understanding of their illness, how patients expect to make decisions (locus of control and power), expectations regarding outcomes of care, and patient values.²¹

Although predicting survival in individual patients is difficult and imprecise,

Implementation

This facilitated ACP process was implemented within the Northern Alberta Renal Program. Unfortunately, there is no clear road map for integrating ACP within a nephrology program, and there are numerous challenges to be overcome. However, a new model currently is being developed to support effective planning for the future and includes 5 key components: (1) facilitated ACP, (2) documentation, (3) timing, (4) systems and processes, and (5) quality improvement.²⁵ Within this facilitated ACP

Summary

ACP currently is under evolution from a document-driven decision-focused event to one that emphasizes a relational patient-centered process that focuses on broader goals of care. The outcomes of such a transformation will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the entire end-of-life experience and having outcomes match patient preferences. It is expected that such a process will enhance shared decision making among patient,

Acknowledgment

The authors gratefully acknowledge suggestions made by 2 anonymous reviewers.

References (39)

S.N. Davison
Pain in hemodialysis patients: Prevalence, cause, severity, and management
Am J Kidney Dis
(2003)
P.L. Kimmel et al.
ESRD patient quality of life: Symptoms, spiritual beliefs, psychosocial factors, and ethnicity
Am J Kidney Dis
(2003)
S.D. Weisbord et al.
Development of a symptom assessment instrument for chronic hemodialysis patients: The Dialysis Symptom Index
J Pain Symptom Manage
(2004)
L.M. Cohen et al.
Dialysis discontinuation and withdrawal of dialysis
Am J Kidney Dis
(2000)
J.L. Holley et al.
Failure of advance care planning to elicit patients’ preferences for withdrawal from dialysis
Am J Kidney Dis
(1999)
A.H. Moss et al.
Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit
Am J Kidney Dis
(2001)
L.M. Cohen et al.
Patient attitudes and psychological considerations in dialysis discontinuation
Psychosomatics
(1993)
L.M. Cohen et al.
Denying the dyingAdvance directives and dialysis discontinuation
Psychosomatics
(1997)
D.M. Michel et al.
Communicating prognosis in the dialysis consent process: A patient-centered, guideline-supported approach
Adv Chronic Kidney Dis
(2005)
US Renal Data System: USRDS 2004 Annual Data Report
(2004)

S.N. Davison et al.

Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients

Nephrol Dial Transplant

(2006)

S.D. Weisbord et al.

Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients

Nephrol Dial Transplant

(2003)

L.M. Cohen et al.

Dying well after discontinuing the life support treatment of dialysis

Arch Intern Med

(2000)

S. Chater et al.

Withdrawal from dialysis: The palliative care perspective

Clin Nephrol

(2006)

S. Davison

Quality end-of-life care in hemodialysis units

Semin Dial

(2002)

A.H. Moss

Recommendations to the Field, Final Report

(2002)

A.H. Moss et al.

Outcomes of cardiopulmonary resuscitation in dialysis patients

J Am Soc Nephrol

(1992)

S.C. Hines et al.

Dialysis patients’ preferences for family-based advance care planning

Ann Intern Med

(1999)

Cited by (98)

Conservative kidney management and kidney supportive care: core components of integrated care for people with kidney failure
2024, Kidney International
Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings.
Hemodialysis Centers Guide 2020
2021, Nefrologia
Citation Excerpt :
The RPC team may also inform the rest of the intervening team of the existence of patients with a previous instructions statement. This can be very useful in relation to decision-making and communication with the patient, favoring dialogue and the sensation of self-control522. The decision-making process will be completed successfully if we have been able to convey the message that we are concerned about the patient, and that we are there to help and plan his or her care to avoid suffering, while also respecting his or her personal preferences.
We present a new edition of the Hemodialysis Center Guide. It is part of the program of updating the Clinical Guides of the Spanish Society of Nephrology. It is a consensus document in which nephrologists with extensive experience in dialysis and experts in nephrological nursing have collaborated. The Guide has been corrected by a group of external evaluators. The opinion of the patients through the kidney diseases patient association (ALCER) has been reported and taken into consideration. This Guide includes in its ten chapters architectural, logistical and organizational aspects. It places special emphasis on human resources needs and their qualification. Review current hemodialysis modalities, dosage and adequacy, and intra and interdialysis monitoring. Hemodialysis is one of the forms of renal replacement therapy, so it mentions the need for transplant waiting list inclusion and the relationship with peritoneal dialysis units. The patient's quality of life on hemodialysis understands the need to relate and travel so care of transitory patients is reviewed and standardized. Quality management is a tool currently needed to achieve continuous improvement of any procedure such as hemodialysis. This Guide is intended to be an aid for the proper functioning of the Dialysis Units, for those responsible for them, as well as for health managers.
Presentamos una nueva edición de la Guía de Centros de Hemodiálisis. Se enmarca en el programa de actualización de las Guías Clínicas de la Sociedad Española de Nefrología. Es un documento de consenso en el que han colaborado nefrólogos con amplia experiencia en diálisis y expertos de la enfermería nefrológica. La Guía ha sido corregida por un grupo de evaluadores externos. Se ha informado y se ha tomado en consideración la opinión de los enfermos a través de la Asociación de Enfermos Renales (ALCER). Esta Guía incluye en sus diez capítulos aspectos arquitectónicos, logísticos y organizativos. Hace especial énfasis en las necesidades de recursos humanos y su cualificación. Revisa las modalidades actuales de hemodiálisis, su dosificación y adecuación y la monitorización y seguimiento intra e interdiálisis. La hemodiálisis es una de las formas de tratamiento renal sustitutivo, por lo que menciona la necesidad de la inclusión en lista de espera para trasplante y la relación con las unidades de diálisis peritoneal. La calidad de vida del paciente en hemodiálisis comprende la necesidad de relacionarse y viajar por lo que se revisa y estandariza la atención de los pacientes transeúntes. La gestión de calidad es una herramienta necesaria actualmente para lograr la mejora continua de cualquier procedimiento como la hemodiálisis. Esta Guía pretende ser una ayuda para el buen funcionamiento de las Unidades de Diálisis, para los responsables de las mismas, así como para los gestores sanitarios.
Interventions Guiding Advance Care Planning Conversations: A Systematic Review
2019, Journal of the American Medical Directors Association
Advance care planning (ACP) is a communicative process of defining preferences for future medical care. Conversation guides support professionals to conduct ACP conversations, yet insight into essential components is limited.
To evaluate the content, rationale, and empirical evidence on the effect of ACP interventions based on conversation guides.
MEDLINE, Embase, PsycINFO, and CINAHL were searched from January 1, 1998, to February 23, 2018, to identify peer-reviewed articles describing or evaluating ACP interventions based on scripted conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale, and empirical evidence were extracted by 2 authors independently using a predesigned form. Assessment of risk of bias and quality of reporting was performed using Cochrane tools and COREQ, respectively.
Eighty-two articles reporting on 34 unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP conversations consisting of 4 phases: preparation, initiation, exploration, and action. Exploration of patient's perspectives on illness, living well, end-of-life (EOL) issues, and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication, and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP conversations, yet perceive them as difficult and emotional.
ACP conversation guides address a diversity of themes regarding illness, EOL issues, and decision making. There is a focus on the exploration of patient's perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited.
Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists
2018, American Journal of Kidney Diseases
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.
Advance Care Planning for Patients Approaching End-Stage Kidney Disease
2017, Seminars in Nephrology
Citation Excerpt :
Tools available for use by providers can be found in the Renal Physicians Association Guideline and are listed in Table 2.13 Understanding a patient’s goals, their desired achievements, fears and hopes, and tolerance to suffering as well as other clinically meaningful events and/or outcomes will help advance the discussion and promote comfort with whatever decision is made.2,4,6 Clinically meaningful issues may mean symptom management, avoidance of hospitalization.
Summary: Patients with chronic kidney disease typically suffer a cascade of comorbid conditions, the magnitude of which have formidable impact on advance care planning (ACP). Complex health care decisions are complicated further by contextual issues that may change over time. A dynamic and evolving process, ACP ideally begins early in the continuum of chronic kidney disease, long before end-stage kidney disease is reached. Planning ahead for care is preparatory to making decisions about kidney replacement therapy and can make for a smooth transition in addition to preventing the start of dialysis by default. This article addresses the key components and unique aspects of ACP for patients approaching dialysis, highlighting the importance of shared decision making, and its effect on the execution of multiple aspects of transition.
Advance care planning for 600 Chinese patients with end-stage renal disease
2016, Hong Kong Journal of Nephrology
Citation Excerpt :
To make an informed choice in accordance to their own values and preferences, patients should be provided with adequate information and empowered to decide on their medical care based on weighing of burdens and benefits.7,10 Advance care planning (ACP) is part of the comprehensive ESRD care with attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and withdrawing dialysis.11 In Hong Kong, the importance of integrating ACP into the ESRD care had been recognized.12
There is increasing recognition of the need to integrate advance care planning (ACP) into end-stage renal disease (ESRD) care with attention to medical, ethical, psychosocial, and spiritual issues but publications comparing patients who chose renal replacement therapy (RRT) and renal palliative care (RPC) is scarce. We here share our experience on ACP for ESRD patients in a center with renal replacement and palliative programs in place.
From June 2006 to December 2011, ESRD patients were empowered to make an informed choice of future medical care in a structured ACP that was emphasized to be an ongoing process. Patients who opted for RRT and RPC would be followed up at the predialysis clinic and the one-stop multidisciplinary RPC clinic, respectively. This was a single-center study in a secondary care hospital. A total of 600 patients (265 RRT, 335 RPC) were enrolled and followed up over a median of 782 days.
The majority of patients and relatives declined dialysis because of perceived physical burden. Only 1.6% of palliative care patients changed their decision and commenced dialysis. Baseline characteristics differed between patients who chose RRT or RPC. Survival declined according to the modified Charlson Comorbidity Index scores. Older age, mental incompetence, hyperlipidemia, high modified Charlson Comorbidity Index, low estimated glomerular filtration rate, and low albumin were important independent predictors of poor survival. Factors affecting the ACP decision were discussed in the Chinese culture context.
A structured ACP could empower the patient to make an informed decision on the management of ESRD.
於未期腎病患者的照顧中加入關注身心社靈和倫理問題的預設照顧計劃(ACP)受到日益重視，但有關比較接受腎替代療法和接受腎臟紓緩治療文獻討論為數不多。作為同時提供腎透析服務以及腎臟紓緩治療的部門，本文旨在分享我們為未期腎病者討論預計照顧計劃的經驗。
自二零零六年六月至二零一零五月間，透過有組織的預設照顧計劃討論，未期腎病患者會被鼓勵就未來的治療計劃作出知情選擇。選擇腎透析和腎臟紓緩治療的病人會分別於透析預備門診和一站式跨科際腎臟紓緩治療門診去覆診。本研究於一家二級醫院進行。總共有六百病人參與此研究，當中265名接受腎透析，335名接受腎臟紓緩治療，其中位跟進日數為782日。
大部份病人和家屬之所以拒絕腎透析是由於預計的身體負累，只有百分之一點六接受腎臟紓緩治療會改變主義而接受腎透析。選擇腎透析和腎臟紓緩治療的病人在基本的身體狀況有明顯分別。生存率亦隨著修改版查爾森共病量表的分數而下降。年長、精神自主能力缺欠、高血脂、修改版查爾森共病量表分數高、腎小球濾過率低、白蛋白低均屬重要暨獨立的因素以預計較差的生存率。本文亦會探討在中國文化處境下影響預設照顧計劃討論的因素。
有組織的預設照顧計劃討論能幫助病人在未期腎病的醫療方向作出知情的選擇。

View all citing articles on Scopus

Originally published online as doi:10.1053/j.ajkd.2006.09.016 on December 1, 2006.

Support: This work was funded by an unrestricted research grant to S.N.D. from Amgen Canada Inc. Potential conflicts of interest: None.

View full text

Special ArticleThe Creation of an Advance Care Planning Process for Patients With ESRD

Section snippets

Defining ACP

Key Aspects and Goals of ACP in Patients With ESRD

Patient Participation

Decision Making and Defining Priorities for Goals of Care

Implementation

Summary

Acknowledgment

Am J Kidney Dis

Am J Kidney Dis

J Pain Symptom Manage

Am J Kidney Dis

Am J Kidney Dis

Am J Kidney Dis

Psychosomatics

Psychosomatics

Adv Chronic Kidney Dis

US Renal Data System: USRDS 2004 Annual Data Report

Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients

Nephrol Dial Transplant

Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients

Nephrol Dial Transplant

Dying well after discontinuing the life support treatment of dialysis

Arch Intern Med

Withdrawal from dialysis: The palliative care perspective

Clin Nephrol

Quality end-of-life care in hemodialysis units

Semin Dial

Recommendations to the Field, Final Report

Outcomes of cardiopulmonary resuscitation in dialysis patients

J Am Soc Nephrol

Dialysis patients’ preferences for family-based advance care planning

Ann Intern Med

Special Article
The Creation of an Advance Care Planning Process for Patients With ESRD