Building an Infrastructure and Standard Methodology for Actively Engaging Patients in Advance Care Planning

Abstract

PURPOSE:

With little to no infrastructure or standardized methodology in place to actively engage patients in advance care planning (ACP), The University of Texas MD Anderson Cancer Center set out to identify needed resources, develop an intervention to improve ACP, and evaluate the intervention’s effects.

METHODS:

With the support of executive leadership, a multidisciplinary workgroup enlisted the support of ACP champions, performed a root-cause analysis, developed a detailed ACP process flow by provider role, developed patient and family education resources, and developed faculty and staff training materials. The workgroup also implemented two Plan-Do-Study-Act intervention cycles, which identified difficulty using the ACP note function in our electronic health record (EHR) as a barrier to ACP adoption. By educating patients, families, and providers and improving the EHR’s functionality, the workgroup aimed to increase the percentage of ambulatory patients with a diagnosis of advanced or metastatic cancer who had a documented ACP conversation with a provider by their third office visit. Our goal was to improve this percentage from 20% at baseline to 50% after the intervention. Data were obtained from our institution’s EHRs.

RESULTS:

The percentage of patients who had documented ACP conversations increased from 20% at baseline to 34% at the end of fiscal year 2017 and 54% at the end of fiscal year 2018.

CONCLUSION:

Owing to the dedicated efforts of many individuals across the institution, the postintervention goal was surpassed. Additional efforts to facilitate ACP conversations are ongoing.

INTRODUCTION

Advance care planning (ACP) is a fundamental part of a patient’s total health care plan and is actively supported by a number of health care organizations.^1-5 Despite these endorsements, little to no standardized ACP infrastructure is available to guide organizations in educating and training providers and patients, documenting ACP encounters, and monitoring compliance. Several universal barriers surrounding ACP have been identified, including lack of time,^6,7 lack of training in communication about serious illnesses,^6,8 Western society’s view of death,⁸ discomfort talking about end-of-life issues,^9,10 confusion about which staff should have ACP discussions,⁹ fragmentation of patient care,^6,11 challenges with documentation,^9,12 and a lack of tools for understanding organizational performance.¹³ The purpose of this study was to address these barriers at our institution, a major cancer center, by identifying and developing the needed resources, implementing necessary interventions, evaluating the effects of the interventions, and sharing our experiences and lessons learned.

METHODS

With executive sponsorship from the Vice President of Medical Affairs, a multidisciplinary workgroup was formed. The mission was twofold: first, to empower and engage patients and families in their care decisions by timely discussions among patients, families, and care providers regarding the patient’s illness, prognosis, and treatment options, including comfort and end-of-life care and the patient’s life goals, values, and wishes for treatment; and second, to educate patients and providers about the importance of documenting these discussions in the electronic health record (EHR) and advance directives, to ensure availability to all involved in the patient’s care to better honor patient preferences. The workgroup, which met biweekly and as needed, first performed a root-cause analysis. This analysis identified factors serving as barriers to ACP at our institution and categorized these factors as pertaining to environment, technology, providers, patients/families, or processes. The root-cause analysis determined that the universal barriers surrounding ACP implementation^6-13 were the same ones that affected our ACP implementation efforts: lack of time, faculty/staff education and training, patient/family education and resources, structured ACP documentation and analytics in the EHR, and a standard process for implementing and evaluating ACP discussions in the ambulatory care setting.

Next, the workgroup began to address these needs by developing standardized faculty/staff education and training materials, including a detailed process flow by provider role (Fig 1); creating education resources for patients, families, and caregivers; and, most importantly, building, testing, and evaluating a structured ACP documentation note and analytics in the EHR. The workgroup worked with our EHR Analytics and Reporting team to create a measure that would capture the documentation of advance care planning discussions and/or the existence of an advance directive by the third office visit^1,2 for all eligible new patient visits after March 6, 2016 (the go-live date for our current EHR system) who have had an invasive malignancy diagnosis on the EHR’s problem list, have had two or more outpatient visits 6 to 12 months after the new patient visit, and who must have been at least 18 years of age at the time of the new patient visit. Balancing measures were not included at this time. However, with future efforts we will want to include the identification, implementation, and evaluation of these measures.

Fig 1.

Process map demonstrating the work flow for implementing advance care planning (ACP). (A) Page 1. (B) Page 2. (*) ACP discussions should occur throughout the care continuum; however, emphasis should be placed on the following time points (with consideration of family dynamics): (†) New patients (by third office visit); (‡) new or revised treatment; (§) change in disease status (eg, disease progression); (||) no effective treatment options; (¶) change in level of care (eg, hospitalization). AD, advance directive; APP, advanced practice provider; MD, medical doctor; MPOA, medical power of attorney; PNS, patient needs screen; RN, registered nurse; SW, social work.

In addition to working with the EHR Analytics and Reporting team, these initial efforts required the support of many ACP champions across the institution—physicians, advanced practice providers, nurses, social work counselors, chaplains, patient educators, communication specialists, information service analysts, health care systems engineers, and patient representatives. These champions came from across the institution (Table 1).

TABLE 1.

A Variety of Clinical Areas and Departments Across the Institution Served as ACP Champions

This initiative was established as a quality improvement (QI) project, and it was co-led by the chair of the Quality Improvement Assessment Board. The project was exempt from institutional review board approval because it was not categorized as human participant research. The ACP QI project was also aligned with the Portfolio Program for Maintenance of Certification credit.

Study Population

For the purpose of this study, our study population included all new patients with a diagnosis of advanced or metastatic cancer who had a documented advance directive and/or ACP conversations with an ambulatory care provider (physicians, fellows, residents, physician assistants, nurse practitioners, nurses, social work counselors, and chaplains) by their third office visit.

Plan-Do-Study-Act Cycle 1 Interventions

Plan.

Baseline data were collected from March 4, 2016 to December 31, 2016. Data retrieved from the EHR showed a 20% (n = 6,798) increase in provider-documented conversations, when averaged among 23 ambulatory clinics. Thus, in an effort to provide greater awareness of and support for the application of ACP by our clinicians, we developed an ACP training program for providers.

Do.

Between January 1, 2017 and July 31, 2017, 45 PowerPoint (Microsoft, Redmond, WA) ACP training presentations were delivered to approximately 1,400 faculty and staff by just a handful of physicians and social work counselors, combined. Training content included:

• What is advance care planning?

• Why is documenting your conversations so important?

• What constitutes an advance directive in Texas?

• What education/training materials/resources are available?

• Where is the ACP note in the EHR and how do you document in the note?

• What constitutes an ACP note (ie, a signed ACP note that includes any ACP discussion related to goals of care, advance directives, code status, and so on)?

• How do you bill for these conversations?

Study.

Feedback obtained during these presentations provided the workgroup with valuable information about the ACP note. Providers remarked that the ACP note was not easily located in the EHR, that its functionality was complicated, that the options provided within the note were thorough but overwhelming, and that the note took too much time to complete.

Act.

To enhance the ease of documenting these conversations and improve compliance with documentation requirements, the workgroup sought and received institutional approval to optimize the ACP note and transition it to a SmartForm using EPIC functionality (EPIC Systems Corporation, Verona, WI) which enables the clinician to write a multiproblem visit note while capturing coded information and providing sophisticated decision support in the form of tailored recommendations for care. This optimization would take approximately 3 months. As the workgroup worked to develop the SmartForm, the first postintervention data (September 2016 to August 2017 or FY17) were collected.

Plan-Do-Study-Act Cycle 2 Interventions

Plan.

The new ACP SmartForm was developed by a multidisciplinary workgroup of physicians, advanced practice providers, nurses, social workers, and EHR administrators. The new content consisted of four separate, but similar, ACP templates: Ancillary, General Provider, Supportive Care, and Intensive Care Unit/Emergency Department. All templates included the same standard content; however, providers and service areas were able to tailor the content to fit their practice. This customization was intended to decrease the amount of time spent on documentation and to increase the amount of time available for direct patient care.

In preparation for the new ACP SmartForm, an institution-wide communication plan was developed and implemented with the assistance of Internal Communications and Integrated Media and the members of MD Anderson’s Psychosocial Council. The plan’s content reinforced what ACP is and is not, identified key tips for leading an ACP conversation, and publicized the launch of the new ACP SmartForm note and instructions for how to use it.

Do.

The new ACP SmartForm note templates were completed and made available for all providers to use on November 4, 2017.

Study.

The workgroup collected the second batch of postintervention data (September 2017 to August 2018 or FY18).

Act.

Additional analysis is required to continue the workgroup’s improvement efforts.

RESULTS

The percentage of new patients with advanced or metastatic cancer who had documented ACP conversations by ambulatory care providers by the third office visit increased from 20% (1,358 of 6,798) at baseline to 34% (5,288 of 15,376) after intervention 1 and to 54% (8,389 of 15,600) after intervention 2 (Fig 2). Additional analysis is still needed, however, to determine how the workgroup can continue to improve the engagement of patients in ACP conversations and clinicians’ documentation of those conversations in the EHR.

Fig 2.

Graph showing the percentage of new patients with a diagnosis of advanced or metastatic cancer who had a documented advance care planning (ACP) conversation with an ambulatory care provider by their third office visit. FY, fiscal year.

DISCUSSION

Changing an organization’s culture and sustaining the change over time are two of the most difficult leadership challenges any organization can face. Cultural change takes time and a substantial amount of patience. Although positive changes in ACP conversations and documentation have occurred, the implementation of the efforts to promote ACP has been challenging. Some of the challenges we encountered included resistance to having these conversations because of a lack of training, a lack of time, and a lack of knowledge surrounding the structured documentation note in the EHR. The challenge we faced with patients is getting them to understand that talking about ACP is not about the end of life but is a process of ongoing communication that should be started early. As a result, our training and education centered around these barriers in an effort to educate patients, families, and providers about the importance of ACP; when to have these conversations and with whom; and, most importantly, the importance of documenting these conversations so that this information can be consistently conveyed across levels of care and among providers (ie, from clinic to emergency department to hospital floor or intensive care unit). Our success in building the infrastructure for ACP conversations and a standardized methodology for engaging patients in ACP conversations and documenting those conversations was the result of several factors: executive sponsorship, the use of a multidisciplinary approach, and the application of a standard QI methodology. As ACP is slowly being integrated into the organization’s clinical practice, the workgroup hopes to develop future interventions to generate ongoing and sustainable improvements.

AUTHOR CONTRIBUTIONS

Conception and design: Karen Stepan, Lara Bashoura, Marina George, Wendy Griffith, Margaret Meyer, Kristen Price, Donna S. Zhukovsky, Maria Alma Rodriguez

Financial support: Maria Alma Rodriguez

Administrative support: Karen Stepan, Wendy Griffith, Margaret Meyer, Maria Alma Rodriguez

Provision of study material or patients: Karen Stepan, Marina George, Wendy Griffith, Margaret Meyer, Kristen Price, Donna S. Zhukovsky, Maria Alma Rodriguez

Collection and assembly of data: Karen Stepan, Wendy Griffith, Margaret Meyer, Nico Nortjé

Data analysis and interpretation: Karen Stepan, Wendy Griffith, Margaret Meyer, Nico Nortjé

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Building an Infrastructure and Standard Methodology for Actively Engaging Patients in Advance Care Planning

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

Lara Bashoura

Consulting or Advisory Role: Genentech (I), Novartis (I), MacroGenics (I), Daiichi Sankyo (I)

Marina George

Honoraria: UpToDate (I)

Consulting or Advisory Role: Marvin Health, Daiichi Sankyo (I)

Kristen Price

Consulting or Advisory Role: Springer Nature

Maria Alma Rodriguez

Research Funding: Pfizer (Inst), Ortho Biotech (Inst), GlaxoSmithKline (Inst)

Research Funding: Amgen (Inst)

No other potential conflicts of interest were reported.