Objective: This pilot study was conducted to test the efficacy and feasibility of a Patient-Centered Advance Care Planning (PC-ACP) intervention on shared decision-making for chronically ill patients with a high risk for end-of-life care needs. A Patient-Centered Advance Care Planning (PC-ACP) intervention is designed to: improve knowledge of Advance Care Planning (ACP), increase congruence between patient and surrogate in treatment decisions, clarify surrogate's decision-making authority, and decrease the patient's and surrogate's conflict engendered in making those decisions.
Design: This was a quasi-experimental post-test study design. A systematic assignment with a random start was used to allocate eligible patients and their designated surrogates to either control (C) or experimental (E) group in three special patient populations.
Sample and setting: The study was conducted at a healthcare organization in La Crosse, Wisconsin. Three special populations of patients chosen for this study were: end-stage congestive heart failure (CHF), end-stage renal disease (ESRD), and preoperative open-heart surgery (OHS) patients. These patient populations present different typologies of end-of-life scenarios with all three groups at risk for a sudden decline or complications leaving an unprepared surrogate. The study involved a total of 27 patients, of which 13 were assigned to the experimental group (4 OHS, 4 CHF, and 5 ESRD) and 14 were allocated to the control group (4 OHS, 5 CHF, and 5 ESRD).
Concepts and intervention: A representational approach to patient education developed from social science theories formed the conceptual model for the intervention. The representational approach to patient education was applied to the ACP model that has been promoted in a nationally recognized program called Respecting Choices. The representational approach works on the theory that through a detailed discussion of illness representations, patients can examine their own belief systems and the limitations or outcomes of continuing with misconceptions. This process provides a context where the interviewer presents new information and facilitates disease-specific end-of-life treatment decisions in patient-surrogate pairs.
Method: Baseline data included collection of demographic data and chart audits to assess the documentation of patients' previous advance care planning or advance directives. Following baseline assessments, the E group's patient-surrogate pairs received a PC-ACP interview as an intervention. Outcome measures were taken immediately following the interview in the E group or upon admission to the study in the C group, including a Statement of Treatment Preferences document and Knowledge about Advance Care Planning (specific to each disease state). The patient and surrogate also completed a Decisional Conflict Scale. As a process outcome, a Quality of Patient-Clinician Communication about End-of-life Care was completed separately by patient/surrogate pairs in the E group after the intervention and in the C group for comparison purposes.
Findings: About 85% of the E group's surrogates changed their decisions regarding patient's future medical care at least in one situation of Statement of Treatment Preferences following the PC-ACP intervention. Congruence in specific treatment preferences between patient and surrogate was statistically significantly different between the experimental and control groups (p=.008). Experimental group patients' satisfaction with the quality of patient-clinician communication was significantly higher than that of control group (t=2.1, p=.043). Likewise, patients' decisional conflict regarding preferences about future medical care was significantly lower than that of control group (t=-3.21, p=.004).
Conclusions: From the pilot study, it can be seen that the PC-ACP intervention can positively impact shared decision-making between patient and surrogate while decreasing decisional conflict. The patient-surrogate pairs are making difficult decisions, but it is easier for them since they know the patient wishes. Findings from the study indicate that congruence in the experimental group was much higher than that of control group. The experimental group demonstrated perfect congruence in clarification of the decision-making authority of the surrogate, whereas only 50% of the patient-surrogate pairs in the control group demonstrated congruence.
Implications: If successful, results will be used to redesign federally mandated assessment of Advance Directives into an improved process of Advance Care Planning to better fit the spirit of legislation-making regarding ACP. Findings from this study may provide a framework for advance care planning that can be replicated in other chronic illnesses and special patient populations.
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