Special ArticleThe Creation of an Advance Care Planning Process for Patients With ESRD
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.
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Cited by (98)
Hemodialysis Centers Guide 2020
2021, NefrologiaCitation 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.
Interventions Guiding Advance Care Planning Conversations: A Systematic Review
2019, Journal of the American Medical Directors AssociationDiscussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists
2018, American Journal of Kidney DiseasesAdvance Care Planning for Patients Approaching End-Stage Kidney Disease
2017, Seminars in NephrologyCitation 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.
Advance care planning for 600 Chinese patients with end-stage renal disease
2016, Hong Kong Journal of NephrologyCitation 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
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.