Nurse-Led Patient-Centered Advance Care Planning: A Pilot Study

Background/Significance: Advance care planning (ACP) is necessary for aligning patients’ treatment preferences with healthcare they receive when they are unable to speak for themselves.  Undesired, burdensome treatment, the most troubling outcome when ACP has not occurred,¹ will persist as long as patients are not proactively engaged in ACP before it is needed.  Although ACP continues to be a growing United States national imperative and after 20 years of legislative support (Patient Self-Determination Act, 1991), ACP participation rates remain low² – likely due to a somewhat narrow focus on just completing a legal document. There is a critical need to identify an approach to the ACP process that promotes acceptance of, and participation in, high-quality ACP. We propose an ongoing process of identifying and communicating values and preferences as foundational for ACP.

Several opportunities for meaningful discussion of ACP between patients and clinicians have been identified. However, due to numerous patient and clinician barriers,^3-5  proactive engagement in the primary care setting rarely occurs, despite the fact that this setting is the locus of preventive healthcare delivery. ACP decision aids (i.e. interactive web-based programs or educational brochures) are available to enhance the ACP process.^6-9 Two web-based decision aids guide patients through the ACP process, provide education, assist with values clarification and discussing wishes with family and clinicians (Making Your Wishes Known⁸ and PREPARE.⁹ Another, MyDirectives, is a proprietary, web-based system in which individuals create and update ADs (www.mydirectives.com).⁶ An interactive, evidence-based educational brochure has been developed and implemented at the study site as an ACP decision aid. But these tools have only been designed for use by patients independently and have not yet been evaluated for their utility in facilitating patient/clinician discussions and patient decision making.

Purpose: A promising ACP engagement approach is for nurses in primary care settings to initiate the ACP process using decision aids to help patients begin, continue, and complete the ACP process. Nurse Care Coordinators (NCCs) in primary care are well-positioned to engage patients in ACP, since they have long term relationships with their patients and frequent opportunities to help patients work through incremental life changes or evolving treatment plans. While the long term goal of our research is to enhance the patient-centered ACP process in primary care to realize improved cost and quality outcomes, the purpose of this pilot study is to determine the feasibility and acceptability of study procedures in comparing the effectiveness of four ACP decision aids when used by NCCs to initiate ACP with patients in primary care. The central hypothesis is that ACP by NCCs in collaboration with patients in primary care settings is feasible and effective when supported by a decision aid.

Methods: Design: Guided by the Individual and Family Self-Management Theory,¹⁰  a four-arm, prospective, comparative design was used.

Setting/Sample:  Forty patients from a large primary care setting in the Midwest United States who do not have an advance directive on file will be recruited from 4 NCC caseloads. If a Surrogate Decision-Maker/Health Care Agent (SDM/HCA) is identified by the patient, the SDM/HCA will also be recruited for a total of 80 participants.

Procedures: Following institutional review board approval, NCCs were trained in the ACP process and use of the decision aids. Patients will be recruited by the NCCs and consented by the study coordinator. After providing consent, patients will be randomized to one of the four intervention arms.  Outcomes will be measured after ACP intervention sessions are completed.

ACP Intervention. The intervention involves discussions between patients and NCCs using 1 of the 4 decision aids to clarify values, goals, and preferences and to promote goal-sharing with family, SDM/HCAs, and providers. The intervention is designed to occur within at least 3 NCC/patient visits over approximately 4 weeks.

Instruments: Acceptability and feasibility of study methods will be measured - including an ACP satisfaction instrument and augmented by interviews. The effects of the ACP decision aids will be evaluated by the ACP Engagement Survey, formal identification of a SDM/HCA, and completion of an advance directive documented in the health record. SDM/HCA perceived knowledge of the patient’s wishes will also be explored.

Analysis: Feasibility and acceptability measures will be summarized by counts and proportions. A Patient Satisfaction with ACP Survey average score will be calculated.⁸ Interview data will be content analyzed.  Patient ACP Engagement Survey scores,¹¹ proportions of formally identified SDM/HCAs and ADs, and SDM/HCA scores on the Perceived Knowledge of the Patient’s Wishes survey¹² will be compared among the four groups using analysis of variance, Kruskal-Wallis, chi-square, and Fisher exact tests as appropriate.

Results: An outline of the training program led by the lead investigators that includes the topics of the ACP process, ACP communication skills, and the use of the decision aids and the results of this ongoing study will be available for poster presentation at the conference.

Conclusion: Utilizing nurses to facilitate the ACP process is a significant opportunity to improve health care and patient outcomes.^{13, 14}   This study supports full-scope nursing practice in the transformation of health care, it supports patient-centeredness in primary care settings, and it is innovative in that it leverages the NCC role to refocus ACP from mere document completion to a meaningful process.